Claiming Disability: Knowledge and Identity 9780814765043

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CLAIMING DISABILIT Y

CULTURAL FRON T GENERAL EDITOR : MICHAE L BERUB E MANIFESTO O F A TENURE D RADICA L BY CARY NELSON BAD SUBJECTS : POLITICA L EDUCATIO N FOR EVERYDA Y LIF E EDITED B Y THE BA D SUBJECTS PRODUCTIO N TEAM CLAIMING DISABILITY : KNOWLEDG E AN D IDENTIT Y BY SIMI LINTO N THE EMPLOYMEN T O F ENGLISH : THEORY , JOBS , AND TH E FUTUR E O F LITERAR Y STUDIE S BY MICHAEL BERUB E

CLAIMING DISABILIT Y KNOWLEDGE AN D IDENTIT Y

FOREWARD B Y MICHAE L BERUB E

NEW YOR K UNIVERSIT Y PRES S NEW YOR K AN D LONDO N

NEW YOR K UNIVERSIT Y PRES S

New York and Londo n

© 199 8 b y New York Universit y All rights reserved Library of Congress Cataloging-in-Publicatio n Dat a Linton, Simi , 1947 Claiming disabilit y : knowledge and identit y / Sim i Linton . p. cm . — (Cultura l fron t (Series) ) Includes bibliographica l reference s an d index . ISBN 0-8147-5133- 4 (clot h : acid-free paper) . — ISB N 0-8147-5134-2 (pape r : acid-free paper ) I. Disabilit y studies. 2 . Sociolog y of disability. I . Title . II. Series . HV1568.2.L55 199 8 305.9'0816 — dc2 1 97-2121 8 CIP New York University Pres s books ar e printed o n acid-fre e paper , and thei r bindin g material s ar e chosen fo r strengt h an d durability . Manufactured i n th e United State s of America 10 9 8 7 6 5

CONTENTS FOREWORD PRESSING THE CLAIM, by MICHAE L BERUB E vi

i

ACKNOWLEDGMENTS xii

i

1. RECLAMATIO

N1

2. REASSIGNIN

G MEANIN G 8

3. DIVIDE

D SOCIET Y 3

4

4. DIVIDE

D CURRICULU M 7

1

5. ENTE

R DISABILIT Y STUDIE S 11

6. DISABILIT

Y STUDIES/NO T DISABILIT Y STUDIE S 13

7. APPLICATION 8. EPILOGU

S 15

E 18

7 2 7 4

REFERENCES 18

7

INDEX 20

1

ABOUT TH E AUTHOR 20

4

FOREWORD PRESSING TH E CLAI M

I

n th e year s an d decade s t o come , insid e academ e an d outside , "claiming disability " i s sure t o becom e on e o f th e mos t politi cally sensitiv e endeavor s a bod y ca n undertake . That' s partl y be cause th e U.S . populatio n wil l b e graduall y aging , an d wit h ag e comes a certai n vulnerabilit y t o th e fleshy frailtie s o f bod y an d mind; bu t it' s als o becaus e disability will hav e s o multifariou s an d indeterminate a meaning i n U.S . culture , regardles s o f how ol d ou r average citize n ma y be . Fo r "disability " i s th e mos t labil e an d pliable o f categories : i t name s thousand s o f huma n condition s and varietie s o f impairment , fro m th e sligh t t o th e severe , fro m imperceptible physica l incapacit y t o inexplicabl e developmenta l de -

lay. It i s a category whose constituenc y i s contingency itself . Any o f us who identif y a s "nondisabled " mus t kno w tha t ou r self-designa tion i s inevitably temporary , an d tha t a car crash, a virus, a degener ative geneti c disease , o r a precedent-settin g lega l decisio n coul d change ou r statu s i n way s ove r whic h w e hav e n o contro l whatso ever. I f it i s obvious why mos t nondisable d peopl e resis t thi s line o f thinking, i t shoul d b e equall y obviou s wh y tha t resistanc e mus t somehow b e overcome . Thus th e definitio n o f disability, lik e th e definitio n o f illness, i s inevitably a matter o f social debat e an d socia l construction : a s Sim i Linton show s tim e an d agai n i n thes e pages , human s hav e define d normal i n a s man y way s a s ther e ar e huma n cultures . I n th e wak e of th e American s wit h Disabilitie s Ac t o f 1990 , "claimin g disabil ity" wil l involv e takin g u p a conteste d plac e i n a n intricat e socio legal apparatus , an d consequently , fe w socia l imperative s wil l b e a s pressing a s ou r nee d t o enric h an d enhanc e ou r culture' s collectiv e understanding o f disability—in it s causes, its effects, it s representa tions, an d it s ramifications . Wha t Linto n show s u s i n Claiming Disability, crucially , i s that universitie s will no t b e able to mee t tha t pressing nee d i f "disability " remain s a subjec t confine d t o th e "applied fields" suc h a s socia l wor k o r rehabilitation ; i n othe r words, i f disabilit y i s no t understoo d i n term s o f it s complex , overdetermined an d sometime s tenuou s relation s t o identity , i t will not b e sufficientl y incorporate d int o th e curriculu m o f th e libera l arts o r int o th e definitio n o f wha t constitute s "th e humanities. " And i f w e d o no t imagin e "disability " a s a broad , genera l subjec t that shape s th e humanities , i t i s al l th e les s likel y tha t w e wil l manage t o imagin e disabilit y a s a broad, genera l subjec t tha t shape s public lif e an d publi c policy . But I shoul d bac k u p fo r a momen t an d confes s tha t I di d no t always think thi s way. (Indeed , I hope m y own chang e of mind wil l serve as evidence o f the cogenc y o f Linton's argument. ) Onc e upo n a time , I did no t se e what "disabilit y studies" might hav e to do wit h viii

M I C H A E L BERUB E

me. I had what I thought was a liberal, open-minded attitude toward mental an d physica l disabilities ; I wa s kin d t o peopl e wh o use d wheelchairs (an d mindful o f whether they did or didn't welcome my physical assistance with doors) and respectful of all persons regardless of thei r menta l abilities , bu t whe n i t cam e t o whethe r disabilit y should b e a major academic subject, I just couldn't se e the point o f one more "additive" studies program in the curriculum. In the early 1990s, fo r instance , I rea d newspape r report s o f a controvers y a t Hunter College over the status of disability studies. Apparently there had been some dispute over whether "disability" should be included in the subjects approved for general education courses; the advocates of disabilit y studie s ha d los t th e battle , an d thei r protest s were de picted, i n th e argo t of that bygon e era , as one mor e instanc e o f the tide o f "politica l correctness " sweepin g throug h th e grove s o f aca deme. Of course, even then I knew better than to believe what I read in th e papers . Bu t thoug h I was properl y outrage d a t th e wa y th e New Right was trying to scandalize women's studies, African American studies, and area studies of all kinds, I honestly didn't think that disability studie s merite d th e sam e kind s o f claims—o r th e sam e kind of defense. As best I can recall at this distance, m y reasoning depended o n a calculation o f center s an d margins— a calculatio n tha t I someho w exempted from the deconstruction I had been trained to apply to all such calculations . Th e calculatio n ra n something lik e this : "general education" should involve broad introductory courses in history, literature, science, philosophy, and political theory. Perhaps after those course requirements are fulfilled, students can choose elective courses in "specializations " like disability studies, bu t disability studies is by definition not general; it is specific only to disability. Look at the field of education, for instance: general education is general, and "special" education is . . . well. . . special, i s it not? As i t turn s out , o f course , Sim i Linto n hersel f wa s a centra l player i n th e controvers y a t Hunter ; thi s boo k i s (i n part ) a result ix FOREWORD

of tha t curricula r disput e ove r th e centralit y o f disabilit y studies . And, mor e importantly , Sim i Linto n wa s right, and togethe r wit h a handful o f scholar s i n thi s smal l bu t growin g field, sh e ha s con vinced m e tha t disabilit y studie s i s n o mor e a n optiona l "additive " to th e libera l art s tha n i s th e stud y o f gende r o r race . Par t o f th e reason I change d m y min d s o dramaticall y ha s nothin g t o d o wit h anything I'v e read ; whe n I became th e fathe r o f a child wit h Dow n syndrome, I realize d immediatel y an d viscerall y tha t disabilit y ca n happen t o anyone—includin g someon e ver y clos e t o you , an d including you , too . Bu t experienc e i s no t m y onl y teacher : readin g scholars lik e Rosemari e Garlan d Thomso n an d Lennar d Davis , essayists lik e Nanc y Mair s an d Lea h Hage r Cohen , I bega n t o encounter an d understan d variou s constituencies withi n th e disabil ity community fro m Dow n syndrom e association s t o dea f culture . Today, when I try to accoun t fo r m y relatio n t o disabilit y studie s as a nondisabled scholar , I am no t merel y appalled bu t intrigue d b y my forme r convictio n tha t disabilit y studies i s not sufficientl y "cen tral" to th e liberal arts . I now believ e tha t m y resistance t o disabilit y studies i s o f a piec e wit h a large r an d mor e insidiou s cultura l form o f resistanc e whereb y nondisable d peopl e find i t difficul t o r undesirable t o imagin e tha t disabilit y la w i s centra l t o civi l right s legislation. Here' s wha t I mean . Jus t a s I wa s "liberal " wit h regar d to disability , s o wa s I "liberal " wit h regar d t o gende r an d race : I supported (an d I continu e t o support ) equa l pa y fo r equa l wor k and initiative s suc h a s affirmativ e actio n regardless of whether those initiatives would ever benefit me. I did no t fea r tha t I would becom e black o r Hispani c someday ; I wa s no t reservin g th e righ t t o a sex change operation ; I simpl y supporte d civi l right s wit h regar d t o race an d gende r becaus e I regarde d thes e a s lon g overdu e attempt s to mak e goo d o n th e promis e o f universa l huma n rights . I t i s fo r the sam e reaso n tha t I suppor t ga y an d lesbia n right s today , wit h regard t o marriage , housing, childrearing , an d employment . Bu t fo r some reason , even though disability law might someday pertain to mey X

M I C H A E L BERUB E

I coul d no t imagin e i t a s centra l t o th e projec t o f establishin g egalitarian civi l right s i n a socia l democracy . Gender , race , sexua l orientation—these seeme d t o me to b e potentially universa l catego ries eve n i f I mysel f woun d u p o n th e privilege d sid e o f each ; disability, by contrast, seeme d to o specific, to o . . . special z categor y of human experience . The irony , o f course , i s precisel y this : eve n thoug h I kne w tha t gender, race , an d sexua l orientatio n wer e unstabl e designations , subject t o al l manne r o f socia l an d historica l vicissitudes , I ha d ye t to learn—o r t o b e taught—tha t disabilit y i s perhap s th e mos t unstable designatio n o f the m all . Surel y I wa s i n denial , a s ar e s o many nondisable d persons ; bu t then , there' s a n od d thin g abou t being i n denial , yo u know . Whe n you'r e tol d you'r e i n denial , yo u tend t o den y it . Thanks t o scholar s lik e Sim i Linton , however , I'v e com e t o believe that th e stud y o f disability ha s it s place in th e curriculum — and tha t plac e i s everywhere. Whether we'r e studyin g th e histor y o f public polic y wit h regar d t o menta l illness , o r th e socia l statu s o f epileptics i n non-Wester n cultures , o r th e depictio n o f disability i n the novel s o f Toni Morrison , o r th e ramification s o f developmenta l delays fo r theorie s o f socia l justice , o r model s o f languag e acquisi tion, or , indeed , th e ver y constructio n o f intelligenc e itself—th e understanding o f disabilit y can— and should be —central t o wha t we do i n universities . Mor e specifically , a s Simi Linto n show s us , it should b e centra l t o wha t w e d o i n th e humanities . An d perhaps , just perhaps , i f disability i s understood a s central t o th e humanities , it will eventuall y b e understoo d a s centra l t o humanity —in theor y and i n practice , i n sicknes s an d i n health , i n cultura l studie s a s i n public policy . Fe w claim s o n ou r attention , I think , coul d b e mor e pressing. Michael Berub e University o f Illinoi s Urbana-Champaign xi FOREWORD

ACKNOWLEDGMENTS

M

y thought s her e begi n an d en d wit h David . In between , thos e thought s tur n t o m y famil y an d friends , North, East , South , an d West . The y ar e m y bookends . My thought s linge r o n al l o f th e disable d wome n an d men , an d allies, wh o for m m y community , an d res t o n a numbe r wh o hav e been invaluabl e i n shapin g thi s book : Barbar a Waxman-Fiduccia , Corbett OToole , Marsh a Saxton , Pau l Longmore , Anthon y Tus sler, Adrienn e Asch , Harla n Hahn , Stev e Brown , Davi d Pfeiffer , Kate Seelman , th e lat e Ir v Zola , an d others , mentione d below . I can't imagin e a mor e astute , an d irreveren t grou p o f friend s an d

colleagues, a mor e envelopin g community , a stronge r mor e com mitted grou p o f activists an d scholars . Significantly, Harily n Rouss o an d Rosemari e Garlan d Thomso n were irreplaceable. They rea d gallons of words and though t throug h every larg e an d smal l proble m wit h me . An d mad e i t fu n an d delicious. Conversations wit h th e ML A dinner committe e (Lennar d Davis , Brenda Brueggeman , Georgin a Kleege , Elle n Steckert , Davi d Mitchell, Sharo n Snyder , Nanc y Mairs , Phylli s Franklin , Harily n Rousso, an d Rosemari e Garlan d Thomson ) an d wit h th e member s of th e Societ y fo r Disabilit y Studie s bedroo m committee s con vinced m e tha t disabilit y studie s wa s th e mos t invigoratin g hom e base fro m whic h t o work . Many peopl e rea d o r hear d piece s o f th e manuscrip t an d wer e generous wit h thei r tim e an d incisiv e i n thei r thinking . Than k yo u all: Le e Bell , Tani s Doe , Caro l Gill , Ricki e Solinger , Elizabet h Kamarck Minnich , Phylli s Rubenfeld , Stanle y Aronowitz, Michell e Fine, Soni a Nieto , Paul a Mayhew , Richar d Weiner , Mik e Hill , Dorothy Helly , Michae l Berube , an d Bo b Vorlicky . It wa s with m y colleague s Susa n Mell o an d Joh n O'Neil l a t th e Disability Studie s Projec t a t Hunte r tha t I first bega n t o formulat e the idea s fo r thi s book . The y contribute d ideas , words , roas t bee f sandwiches, an d load s o f inspiration . Thanks t o m y assistants , particularl y Myrtild a Tomlinson , Mi chelle Malek , Zacher y Miller , an d Julie Smore , fo r al l thei r help . Great thank s t o Eri c Zinner , m y edito r a t Ne w Yor k Universit y Press, an d t o Michae l Berube , th e edito r o f th e Cultura l Fron t series tha t I am privilege d t o b e a part of . The Nationa l Institut e o f Disabilit y an d Rehabilitatio n Researc h provided th e Switze r Distinguishe d Fellowshi p tha t gav e m e th e time t o conduc t th e researc h an d t o write . Than k yo u fo r tha t support. Great thank s t o m y sister , Florenc e Weiner , fo r forgin g a pat h XIV

ACKNOWLEDGMENTS

as th e first write r i n th e family , fo r he r commitments , he r mora l center, an d fo r he r wonderful, wack y tak e o n th e world . And I acknowledge, with grea t gusto an d love , David, th e gravit y and heliu m i n m y life , th e smartes t ma n o n eigh t wheels , th e delight o f all time .

XV

ACKNOWLEDGMENTS

i RECLAMATION

The curriculu m i s a manifest expressio n o f the cultura l value s just as laws are manifest expression s of what a society deems to be right or wrong behavior. Kliebar d 1992 , 199 Our educationa l institution s . .. are , no t alon e bu t preeminently , the shapers and guardians of cultural memory and hence of cultural meanings. Minnic h 1990 , 12

I

t was , a t on e time , seamless . Ther e wer e n o disjuncture s be tween th e dominant cultura l narrativ e o f disability and th e aca demic narrative . The y supporte d an d defende d eac h other . Bu t i n the pas t twent y years , as the flaws in th e civi c response t o disabilit y have been exposed, as changing social structures and legislative victories reassemble that narrative, the academic tale slips further behind . It neither reflects th e change that has occurred nor offers th e space or the means to think in mor e progressive ways about disability . Enter disabilit y studies: a location an d a means t o thin k criticall y about disability , a juncture tha t ca n serv e bot h academi c discours e and social change. Disability studies provides th e means t o hold aca -

demies accountabl e fo r th e veracit y an d th e socia l consequence s o f their work , jus t a s activis m ha s serve d t o hol d th e community , th e education system , an d th e legislatur e accountabl e fo r disable d peo ple's compromised socia l position . This boo k examine s disability studies as a field of inquiry, it s historical roots, present configuration, an d explanatory value. Disability studies takes for its subject matte r not simply the variations that exis t in huma n behavior , appearance , functioning , sensor y acuity , an d cognitive processin g but , mor e crucially , th e meanin g w e mak e o f those variations . Th e field explore s th e critica l division s ou r societ y makes in creating the normal versus the pathological, the insider versus the outsider, or the competent citize n versus the ward of the state. It is an interdisciplinary field based on a sociopolitical analysis of disability and informed bot h by the knowledge base and methodologie s used in the traditional liberal arts, and by conceptualizations an d approaches developed in areas of the new scholarship. Disability studies has emerged as a logical base for examination o f the construction an d function o f "disability/ * These scholarl y exploration s an d th e initia tives undertake n b y th e disabilit y right s movemen t hav e resulte d i n new paradigms used to understand disabilit y as a social, political, and cultural phenomenon . Disability studie s ha s arise n i n th e pas t twent y year s t o focu s a n organized critiqu e o n th e constricted , inadequate , an d inaccurat e conceptualizations o f disabilit y tha t hav e dominate d academi c in quiry. Above all, the critiqu e include s a challenge t o th e notio n tha t disability i s primaril y a medica l category . Consequently , disabilit y studies contest s th e current academi c divisio n o f labor i n whic h th e study of the phenomenon rest s in the specialized applied fields (rehabilitation, specia l education , health , an d s o on ) an d th e res t o f th e academy i s largely exempt fro m meaningfu l inquir y into th e subjec t of disability . B y refusing th e medicalizatio n o f disability an d b y re framing disabilit y as a designation havin g primarily social and politi cal significance, disabilit y studies points to the inadequacy of the en 2

RECLAMATION

tire curriculum with respec t to the study of disability. The fault line s that hav e bee n expose d stretc h fro m on e en d o f th e curriculu m t o the other : fro m cultura l studie s t o American studies , from women' s studies t o African America n studies , fro m biolog y t o literar y criti cism, from histor y to psychology, and from specia l education t o philosophy. Despite the steady growth o f scholarship and courses, particularl y in the past five years, the field of disability studies is even more mar ginal i n th e academi c cultur e tha n disable d peopl e ar e i n th e civi c culture. Th e enormou s energ y society expends keepin g peopl e wit h disabilities sequestere d an d i n subordinat e position s i s matche d b y the academy's effort t o justify tha t isolatio n an d oppression . Disabled people , an d I wil l immediatel y identif y mysel f a s one , are a group only recently entering everyday civic life. A host of factors have typically screened u s from publi c view. We have been hidden — whether i n the institutions that have confined us , the attics and basements tha t sheltere d ou r family' s shame , th e "special " school s an d classrooms designe d t o solv e the problem s w e ar e thought t o repre sent, o r ridin g i n segregate d transportation , thos e "invalid " coaches , that shuttle disabled people from on e of these venues to another. Th e public has gotten s o used to these screens that a s we are now emerg ing, upping the ante on th e demands fo r a truly inclusive society, we disrupt th e social order. We furthe r confoun d expectation s when w e have th e temerit y t o emerg e a s forthrigh t an d resourcefu l people , nothing lik e th e self-loathing , docile , bitter , o r insentien t fictional versions of ourselves the public is more used to . We hav e com e ou t no t wit h brow n woolle n la p robe s ove r ou r withered legs or dark glasses over our pale eyes but i n shorts and san dals, i n overall s an d busines s suits , dresse d fo r pla y an d work — straightforward, unmasked , an d unapologetic. l W e are , a s Crosby , Stills, an d Nas h tol d thei r Woodstoc k audience , lettin g ou r "frea k flag fly." And we are not only the high-toned wheelchair athletes seen in recent television ad s but th e gangly, pudgy, lumpy, and bump y o f 3

RECLAMATION

us, declaring that shame will no longer structure our wardrobe or our discourse. We ar e everywhere thes e days, wheeling an d lopin g dow n the street, tapping our canes, sucking on our breathing tubes, follow ing our guide dogs, puffing an d sipping on the mouth sticks that propel ou r motorize d chairs . We ma y drool, hea r voices, speak i n stac cato syllables , wea r catheter s t o collec t ou r urine , o r liv e wit h a compromised immun e system . W e ar e al l boun d together , no t b y this lis t o f ou r collectiv e symptom s bu t b y th e socia l an d politica l circumstances tha t hav e forge d u s a s a group . W e hav e foun d on e another an d foun d a voice to express not despai r at our fate bu t out rage a t ou r socia l positioning . Ou r symptoms , thoug h sometime s painful, scary , unpleasant , o r difficul t t o manage , ar e nevertheles s part of the dailiness of life. They exist and have existed in all commu nities throughou t time . What w e rai l agains t ar e th e strategie s use d to deprive us of rights, opportunity, an d th e pursuit o f pleasure. It is our closete d selves that hav e been naturalize d within th e academic curriculum . Eve n a cursor y revie w o f th e curriculu m reveal s only patronizin g an d distorte d representation s o f disability , an d these ar e lef t largel y unexamine d an d unchallenged . Bu t mino r housecleaning wil l no t ri d ou t th e deepe r structura l elements , th e scholarly conventions , an d theoretica l underpinning s withi n whic h those representation s ar e deeme d vali d an d useful . A close r loo k re veals problems i n bot h th e structure an d conten t o f the curriculum , predicated o n a narrowly conceived interpretatio n o f disability. The field o f disabilit y studie s i s no w a t a critica l juncture ; scholars an d activist s hav e demonstrate d tha t disabilit y i s sociall y constructed t o serv e certai n ends , bu t no w i t behoove s u s t o dem onstrate ho w knowledg e abou t disabilit y i s sociall y produce d t o uphold existin g practices. I attemp t t o captur e thi s critica l momen t here i n a stop-action phot o tha t reveal s tha t terrain . Ye t thi s i s also a strategic endeavo r no t onl y t o mar k th e momen t an d th e territor y but als o t o stak e ou t th e conteste d border s wher e th e resistanc e t o the idea s i s strongest . 4 RECLAMATION

Having appointe d mysel f a s navigator , I should commen t o n m y identity a s a disable d woman . Th e particular s o f m y conditio n ar e not o f concern . The y ma y imping e o n specifi c piece s o f th e puzzl e I a m tryin g t o assembl e here , an d I will discus s the m i n tha t context, bu t the y ar e o f littl e consequenc e t o thi s overview . Disa bled people , acros s th e broades t spectru m o f disability , hav e solidi fied as a group. Although thi s group identit y ha s certainly no t bee n comfortably embrace d b y al l disable d people , a stron g disabilit y alliance ha s le d t o civi l right s victorie s an d th e foundatio n o f a clearly identifie d disable d community . Th e cultura l narrative 2 o f this communit y incorporate s a fai r shar e o f adversit y an d struggle , but i t i s also , an d significantly , a n accoun t o f a worl d negotiate d from the vantage point of the atypical. Although th e dominan t cul ture describe s tha t atypica l experienc e a s defici t an d loss , th e disa bled community' s narrativ e recount s i t i n mor e comple x ways . Th e cultural stuf f o f th e communit y i s th e creativ e respons e t o atypica l experience, th e adaptiv e maneuver s throug h a world configure d fo r nondisabled people . Th e materia l tha t bind s u s is the ar t o f finding one another , o f identifyin g an d namin g disabilit y i n a world reluc tant t o discus s it , an d o f unearthin g historicall y an d culturall y significant materia l tha t relate s t o ou r experience . In th e absenc e o f the specific s o f m y condition , an d m y life , yo u may find yoursel f conjurin g u p som e o f the readil y available image s of disabled women, bot h fictional an d real : the beholde n Blin d Gir l in Chaplin' s City Lights; the shame-rive n Laur a Wingfiel d i n The Glass Menagerie; the dolefu l poste r chil d gazin g u p a t yo u fro m th e collection bo x o n th e supermarke t checkou t counter ; th e defian t disability right s activis t arreste d fo r civi l disobedience ; you r neigh bor down th e hall—or yo u ma y see yourself. We al l share a cultural space. I don' t clai m t o spea k t o ever y person' s experience , onl y t o paint mysel f within thi s frame . M y experienc e a s a disabled subjec t and m y allianc e wit h th e communit y ar e a sourc e o f identity , motivation, an d information . 5

RECLAMATION

I am also , by discipline, a psychologist, bu t thi s essa y is informe d more directly by women's studies, queer studies, cultural studies, the field o f disciplinarity , and , o f course , disabilit y studie s tha n b y m y training. In fact, some basic tenets of psychology run counte r t o core ideas i n disabilit y studie s i n a t leas t thre e fundamenta l ways . First , psychology i s responsible fo r th e formulation s an d researc h conven tions that cemen t th e ideas of "normal," "deviant, " "abnormal, " an d "pathology" in place. The fact tha t disability is inextricably linked t o pathology i s problematic , bu t eve n mor e fundamenta l i s psycholo gy's endorsement o f the idea of "normalcy," which center s and privi leges certain types of behavior, functioning , an d appearance. Second , psychology's emphasi s o n empiricis m an d it s repudiatio n o f stand point theor y or positionality as legitimate starting points for researc h work agains t th e type s of qualitative, interpretive , historica l analyse s necessary to explicate the social construction o f disability, th e mean ings assigned t o disability, and th e policies and practices that oppres s disabled people . Olive r discusse s thi s issu e i n a somewha t differen t way when h e note s tha t th e "socia l relation s o f researc h productio n . . . ar e built upo n a firm distinction betwee n th e researcher an d th e researched" (Olive r 1992 , 102) . Third , althoug h ther e ar e excep tions, psycholog y primaril y train s practitioner s t o interven e o n th e personal leve l rathe r tha n interven e t o alte r th e environment . Psy chology i n genera l ha s traditionall y focuse d attentio n o n "th e per sonal qualities of those defined a s having or being the problem," and , as a result, th e polic y derive d fro m tha t researc h addresse s "person fixing rathe r tha n context-changing " (Trickett , Watts , an d Birma n 1994, 18) . Disabilit y studies , i n contrast , focuse s o n th e externa l variables: th e social , political , an d intellectua l contingencie s tha t shape meaning and behavior . The question s tha t psycholog y an d othe r traditiona l discipline s ask, an d th e method s an d practice s foun d i n thos e discipline s ar e insufficient fo r addressin g th e problem s tha t disabilit y studie s set s out t o solve . Thes e limitation s aside , I mus t ad d tha t I hav e foun d 6

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my clinica l trainin g usefu l no t i n fosterin g disabilit y studie s bu t i n analyzing the strengt h o f the resistanc e I'v e witnessed ove r th e years to disabilit y studie s an d t o disable d people' s perspective . I hop e i n thi s boo k o n disabilit y t o brin g int o star k relief , t o foreground, th e mechanism s b y whic h disabilit y i s covere d over , layered with meanin g an d rendere d invisible . This boo k i s an effor t to tur n thos e processe s insid e ou t an d revea l the m t o b e no t inevitable reaction s t o huma n condition s labele d disabilitie s bu t devices use d t o sor t huma n being s accordin g t o th e socia l an d economic need s o f a society . Th e disabilit y right s movemen t ha s paved th e wa y fo r a n investigatio n o f thi s sort . B y calling attentio n to th e pattern s o f discrimination , b y creatin g unit y acros s pre viously divided constituencies , an d b y forging a potent an d effectiv e civil right s an d socia l justic e movement , i t ha s challenge d th e academic communit y t o recko n wit h it s ow n rol e i n thi s process . The scholarshi p an d curriculu m practice s house d i n academi c insti tutions pla y a significan t rol e i n th e perpetuatio n o f a divide d an d unequal society . Th e academ y ha s onl y jus t begu n t o examin e how it s paltr y an d lopside d visio n o f disabilit y compromise s th e knowledge base . Therefore , thi s boo k examine s th e consequence s of thes e constricte d view s o n disable d people' s live s an d o n th e knowledge tha t w e impar t t o students . I t use s a s it s mai n tex t th e academic cultur e tha t construct s tha t knowledg e an d participate s i n the constructio n o f those lives . NOTES

1. Th e unapologeti c stanc e i s give n it s ful l recognitio n i n th e aptl y named boo k No Apologies: Making It with a Disability (Werner 1986). 2. Fo r furthe r informatio n o n idea s o n disabilit y a s culture se e Steve Brown's monograp h Investigating a Culture of Disability (1994) . I t is available fro m th e Institut e o n Disabilit y Culture , 226 0 Sunris e Point Road, Las Cruces, New Mexico 88011 . 7 RECLAMATION

2 REASSIGNING MEANIN G

T

he presen t examinatio n o f disabilit y ha s n o nee d fo r th e medical languag e of symptoms an d diagnosti c categories. Disability studie s look s t o differen t kind s o f signifiers an d th e identifi cation o f differen t kind s o f syndrome s fo r it s material . Th e ele ments o f interes t her e ar e th e linguisti c convention s tha t structur e the meaning s assigne d t o disabilit y an d th e pattern s o f respons e t o disability tha t emanat e from , o r ar e attendan t upon , thos e mean ings. The medica l meaning-makin g wa s negotiate d amon g intereste d parties wh o package d thei r versio n o f disabilit y i n way s tha t in creased th e ideas ' potenc y an d marketability . Th e disabilit y com -

munity ha s attempte d t o wres t contro l o f th e languag e fro m th e previous owners , an d reassig n meanin g t o th e terminolog y use d t o describe disabilit y an d disable d people . Thi s ne w languag e convey s different meanings , and , significantly , th e shift s serv e a s metacom munications abou t th e social , political , intellectual , an d ideologica l transformations tha t hav e taken plac e ove r th e pas t tw o decades . NAMING OPPRESSIO N

It ha s bee n particularl y importan t t o brin g t o ligh t languag e tha t reinforces th e dominan t culture' s view s o f disability . A usefu l ste p in tha t proces s ha s bee n th e constructio n o f th e term s ableist an d ableism, whic h ca n b e use d t o organiz e idea s abou t th e centerin g and dominatio n o f th e nondisable d experienc e an d poin t o f view . Ableism has recently landed i n th e Reader's Digest Oxford Wordfinder (Tulloch 1993) , wher e i t i s define d a s "discriminatio n i n favo r o f the able-bodied. " I woul d add , extrapolatin g fro m th e definition s of racism an d sexism, tha t ableism als o include s th e ide a tha t a person's abilitie s o r characteristic s ar e determine d b y disabilit y o r that peopl e wit h disabilitie s a s a grou p ar e inferio r t o nondisable d people. Althoug h ther e i s probabl y greate r consensu s amon g th e general publi c o n wha t coul d b e labele d racis t o r sexis t languag e than ther e i s o n wha t migh t b e considere d ableist , tha t ma y b e because th e natur e o f th e oppressio n o f disable d peopl e i s no t ye t as widely understood . NAMING TH E GROU P

Across th e worl d an d throughou t histor y various terminologie s an d meanings ar e ascribe d t o th e type s o f huma n variation s know n i n contemporary Westernize d countrie s a s disabilities . Ove r th e pas t century th e ter m disabled and others , suc h a s handicapped an d th e less inclusiv e ter m crippled, have emerge d a s collectiv e noun s tha t convey th e ide a tha t ther e i s somethin g tha t link s thi s disparat e group o f people . Th e term s hav e bee n use d t o arrang e peopl e

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9

in way s tha t ar e sociall y an d economicall y convenien t t o th e so ciety. There ar e variou s consequence s o f th e chose n terminolog y an d variation i n th e degre e o f contro l tha t th e name d grou p ha s ove r the labelin g process . The term s disability and disabled people are th e most commonl y use d b y disabilit y right s activists , an d recentl y policy maker s an d healt h car e professionals hav e begu n t o us e thes e terms mor e consistently . Althoug h ther e i s som e agreemen t o n terminology, ther e ar e disagreement s abou t wha t i t i s tha t unite s disabled peopl e an d whethe r disable d peopl e shoul d hav e contro l over th e namin g o f their experience . The term disability\ as it has been used in general parlance, appears to signify something material and concrete, a physical or psychologi cal conditio n considere d t o hav e predominantl y medica l signifi cance. Yet it is an arbitrary designation, use d erratically both b y professionals who lay claim to naming such phenomena an d by confuse d citizens. A projec t o f disabilit y studie s scholar s an d th e disabilit y rights movement ha s been t o bring int o shar p relie f the processes b y which disability has bee n imbue d wit h th e meaning(s ) i t ha s an d t o reassign a meaning tha t i s consistent wit h a sociopolitical analysi s o f disability. Divesting it of its current meaning is no small feat. As typically used, the term disability is a linchpin i n a complex web of social ideals, institutional structures , an d governmen t policies . As a result , many peopl e hav e a veste d interes t i n keepin g a tenaciou s hol d o n the curren t meanin g becaus e i t i s consistent wit h th e practice s an d policies that are central t o their livelihood o r their ideologies. Peopl e may not be driven as much b y economic imperatives as by a personal investment i n their own beliefs and practices, in metaphors they hold dear, or in their own professional roles . Further, underlyin g this tan gled web of needs and beliefs, and central to the arguments presente d in thi s boo k i s an epistemologica l structur e tha t bot h generate s an d reflects curren t interpretations. 1 A glanc e throug h a fe w dictionarie s wil l revea l definition s o f 10

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disability tha t includ e incapacity , a disadvantage , deficiency , espe cially a physical or menta l impairmen t tha t restrict s normal achieve ment; somethin g tha t hinder s o r incapacitates , somethin g tha t inca pacitates o r disqualifies . Lega l definition s includ e lega l incapacit y or disqualification . Stedmans Medical Dictionary (1976 ) identifie s disability a s a "medicolega l ter m signifyin g los s o f functio n an d earning power, " wherea s disablement i s a "medicolega l ter m signi fying los s o f functio n withou t los s o f earnin g power " (400) . Thes e definitions ar e understoo d b y th e genera l publi c an d b y man y i n the academi c communit y t o b e usefu l ones . Disability s o define d is a medicall y derive d ter m tha t assign s predominantl y medica l significance an d meanin g t o certai n type s o f human variation . The decisio n t o assig n medica l meaning s t o disability ha s ha d many an d varie d consequence s fo r disable d people . On e clea r bene fit ha s bee n th e medica l treatment s tha t hav e increase d th e well being an d vitalit y o f man y disable d people , indee d hav e save d people's lives . Ongoin g attentio n b y th e medica l professio n t o th e health an d well-bein g o f peopl e wit h disabilitie s an d t o preventio n of disease and impairment s i s critical. Yet, along with thes e benefits , there ar e enormous negativ e consequences tha t will take a large par t of thi s boo k t o lis t an d explain . Briefly , th e medicalizatio n o f disability cast s huma n variatio n a s devianc e fro m th e norm , a s pathological condition , a s deficit , and , significantly , a s a n individ ual burde n an d persona l tragedy . Society , i n agreein g t o assig n medical meanin g t o disability, collude s t o kee p th e issu e within th e purview o f th e medica l establishment , t o kee p i t a personal matte r and "treat " th e conditio n an d th e perso n wit h th e conditio n rathe r than "treating " th e socia l processe s an d policie s tha t constric t disa bled people' s lives . Th e disabilit y studies ' an d disabilit y right s movement's positio n i s critica l o f th e dominatio n o f th e medica l definition an d views it as a major stumblin g bloc k to th e reinterpre tation o f disability a s a politica l categor y an d t o th e socia l change s that coul d follo w suc h a shift . 11 REASSIGNING MEANIN G

While retainin g th e ter m disability, despit e it s medica l origins , a premise o f mos t o f the literatur e i n disabilit y studie s i s that disability is bes t understoo d a s a marke r o f identity . A s such , i t ha s bee n used t o buil d a coalitio n o f peopl e wit h significan t impairments , people with behaviora l o r anatomical characteristic s marke d a s deviant, an d peopl e wh o hav e o r ar e suspecte d o f havin g conditions , such a s AID S o r emotiona l illness , tha t mak e the m target s o f discrimination. 2 A s rendere d i n disabilit y studie s scholarship , dis ability has becom e a more capaciou s category , incorporatin g peopl e with a rang e o f physical , emotional , sensory , an d cognitiv e condi tions. Although th e categor y i s broad, th e ter m i s used t o designat e a specific minorit y group . When medica l definition s o f disability are dominant, i t i s logica l t o separat e peopl e accordin g t o biomedica l condition throug h th e us e o f diagnosti c categorie s an d t o forefron t medical perspective s o n huma n variation . Whe n disabilit y i s rede fined a s a social/politica l category , peopl e wit h a variet y o f condi tions ar e identifie d a s people with disabilities o r disabled people> a group boun d b y commo n socia l an d politica l experience . Thes e designations, a s reclaime d b y th e community , ar e use d t o identif y us a s a constituency, t o serv e ou r need s fo r unit y an d identity , an d to functio n a s a basis fo r politica l activism . The questio n o f wh o "qualifies " a s disable d i s a s answerabl e or a s confoundin g a s question s abou t an y identit y status . On e simple respons e migh t b e tha t yo u ar e disable d i f you sa y you are . Although tha t declaratio n won' t satisf y a worker' s compensatio n board, i t ha s a certai n credibilit y wit h th e disable d community . The degre e an d significanc e o f a n individual' s impairmen t i s ofte n less o f a n issu e tha n th e degre e t o whic h someon e identifie s a s disabled. Anothe r wa y t o answe r th e questio n i s to sa y tha t disabil ity "i s mostl y a socia l distinctio n . . . a marginalize d status " an d the statu s i s assigned b y "th e majorit y cultur e tribunal " (Gil l 1994 , 44). Bu t th e proble m get s stickie r whe n th e distinctio n betwee n disabled an d nondisable d i s challenge d b y peopl e wh o say , 12

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"Actually, we'r e al l disable d i n som e way , aren' t we? " (46) . Gil l says th e answe r i s n o t o thos e whos e differenc e "doe s not signifi cantly affec t dail y lif e an d th e perso n doe s no t [wit h som e consis tency] presen t himself/hersel f t o th e worl d a t larg e a s a disable d person" (46). I concu r wit h Gill ; I a m no t willin g o r intereste d i n erasing th e lin e betwee n disable d an d nondisable d people , a s lon g as disable d peopl e ar e devalue d an d discriminate d against , an d as lon g a s namin g th e categor y serve s t o cal l attentio n t o tha t treatment. Over th e pas t twent y years , disable d peopl e hav e gaine d greate r control ove r thes e definitiona l issues . The disabled o r the handicapped was replace d i n th e mid-70 s b y people with disabilities t o maintain disabilit y a s a characteristi c o f th e individual , a s oppose d to th e definin g variable . At th e time , som e peopl e woul d purpose fully sa y women and men with disabilities to provide a n extra dimen sion t o th e peopl e bein g describe d an d t o deneute r th e wa y the disabled wer e traditionall y described . Beginnin g i n th e earl y 90 s disabled people has bee n increasingl y use d i n disabilit y studie s an d disability right s circle s whe n referrin g t o th e constituenc y group . Rather tha n maintainin g disabilit y a s a secondar y characteristic , disabled ha s becom e a marke r o f th e identit y tha t th e individua l and grou p wish t o highligh t an d cal l attention to . In thi s book , th e term s disabled an d nondisabled ar e use d fre quently to designate membership withi n o r outside th e community . Disabled i s centered , an d nondisable d i s place d i n th e periphera l position i n orde r t o loo k a t th e worl d fro m th e insid e out , t o expose th e perspectiv e an d expertis e tha t i s silenced . Occasionally , people with disabilities is used a s a variant o f disabled people. The us e of nondisabled is strategic : t o cente r disability . It s inclusio n i n thi s chapter i s also to set the stage for postulatin g abou t th e nondisable d position i n societ y an d i n scholarshi p i n late r chapters . Thi s actio n is simila r t o th e strateg y o f markin g an d articulatin g "whiteness. " The assume d positio n i n scholarshi p ha s alway s bee n th e male , 13

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white, nondisable d scholar ; i t i s th e defaul t category . A s recen t scholarship ha s shown , thes e position s ar e no t onl y presumptivel y hegemonic becaus e the y are the assume d universa l stance , a s well as the presume d neutra l o r objectiv e stance , bu t als o undertheorized . The nondisable d stance , lik e th e whit e stance , i s veiled . "White cannot b e sai d quit e ou t loud , o r i t lose s it s crucia l positio n a s a precondition o f visio n an d become s th e objec t o f scrutiny " (Hara way 1989 , 152) . Therefore , centerin g th e disable d positio n an d labeling it s opposit e nondisable d focuse s attentio n o n bot h th e structure o f knowledge an d th e structur e o f society. NICE WORD S

Terms suc h a s physically challengedy th e able disabledy handicapable y and special people/children surfac e a t differen t time s an d places . They ar e rarel y use d b y disable d activist s an d scholar s (excep t wit h palpable irony) . Althoug h the y ma y b e considere d well-meanin g attempts t o inflat e th e value o f people with disabilities , the y conve y the boosteris m an d do-goode r mentalit y endemi c t o th e paternalis tic agencies tha t contro l man y disable d people' s lives . Physically challenged is th e onl y ter m tha t seem s t o hav e caugh t on. Nondisable d peopl e us e i t i n conversatio n aroun d disable d people wit h n o hin t o f anxiety , suggestin g tha t the y believ e i t i s a positive term . Thi s phras e doe s no t mak e muc h sens e t o me . T o say tha t I a m physicall y challenge d i s t o stat e tha t th e obstacle s t o my participatio n ar e physical , no t social , an d tha t th e barrie r i s m y own disability . Further , i t separate s thos e o f u s wit h mobilit y impairments fro m othe r disable d people , no t a vali d o r usefu l partition fo r thos e intereste d i n coalitio n buildin g an d socia l change. Variou s derivative s o f th e ter m challenged hav e bee n adopted a s a descriptio n use d i n jokes . Fo r instance , "verticall y challenged" i s considered a humorou s wa y t o sa y short , an d "calo rically challenged" t o sa y fat. A review of the Broadwa y musica l Big in th e New Yorker said tha t th e scor e i s "melodically challenged. " 14 REASSIGNING M E A N I N G

I observe d a uniqu e us e o f challenged in th e loca l Barne s an d Nobles superstore . Th e children' s departmen t ha s a sectio n fo r books o n "Childre n wit h Specia l Needs. " Ther e ar e shelve s labele d "Epilepsy" an d "Dow n Syndrome. " A separat e shel f a t th e botto m is labele d "Misc . Challenges, " indicatin g tha t i t i s no w use d a s a n organizing category . The ter m able disabled and handicapable have ha d a fairl y shor t shelf life . The y ar e used , i t seems , t o refut e commo n stereotype s o f incompetence. The y are , though , defensiv e an d reactiv e term s rather tha n term s tha t advanc e a new agenda . An entir e profession , i n fac t a numbe r o f professions , ar e buil t around th e word special. A huge infrastructur e rest s on th e ide a tha t special children and special education are valid an d usefu l structurin g ideas. Although dictionarie s insis t tha t special be reserve d fo r thing s that surpas s wha t i s common , ar e distinc t amon g other s o f thei r kind, ar e peculia r t o a specifi c person , hav e a limite d o r specifi c function, ar e arrange d fo r a particula r purpose , o r ar e arrange d fo r a particula r occasion , experienc e teache s u s tha t special when ap plied t o educatio n o r t o childre n mean s somethin g different . The namin g o f disable d childre n an d th e educatio n tha t "i s designed fo r student s whos e learnin g need s canno t b e me t b y a standard schoo l curriculum " {American Heritage Dictionary 1992 ) as special can b e understoo d onl y a s a euphemisti c formulation , obscuring th e realit y tha t neithe r th e children no r th e educatio n ar e considered desirabl e an d tha t the y ar e not though t t o "surpas s wha t is common. " Labeling th e educatio n an d it s recipient s specia l ma y hav e bee n a deliberat e attemp t t o confe r legitimac y o n th e educationa l prac tice an d t o pro p u p a discarde d group . I t i s als o importan t t o consider th e unconsciou s feeling s suc h a strateg y ma y mask . I t i s my feelin g tha t th e natio n i n genera l respond s t o disable d peopl e with grea t ambivalence . Whatever antipath y an d disdai n i s felt i s in competition wit h feeling s o f empathy, guilt , an d identification . Th e 15 REASSIGNING MEANIN G

term special may b e evidenc e no t o f a deliberat e maneuve r bu t o f a collective "reactio n formation, " Freud' s ter m fo r th e unconsciou s defense mechanis m i n whic h a n individua l adopt s attitude s an d behaviors tha t ar e opposit e t o hi s o r he r ow n tru e feelings , i n orde r to protec t th e eg o fro m th e anxiet y fel t fro m experiencin g th e rea l feelings. The ironi c character o f the word special has been capture d i n th e routine o n Saturday Night Live, wher e th e characte r calle d th e "Church Lady " declare s when sh e encounter s somethin g distastefu l or morall y repugnant , "Isn' t tha t special! " NASTY WORD S

Some o f the les s subtle o r mor e idiomati c term s fo r disable d peopl e such as : cripple, vegetable, dumb, deformed, retard, and gimp hav e generally bee n expunge d fro m publi c conversatio n bu t emerg e i n various type s o f discourse . Althoug h the y ar e understoo d t o b e offensive o r hurtful , the y ar e stil l use d i n joke s an d i n informa l conversation. Cripple as a descriptor o f disabled peopl e i s considered impolite , but th e wor d ha s retaine d it s metaphori c vitality , a s i n "th e expos e in th e newspape r cripple d th e politician' s campaign. " Th e ter m i s also use d occasionall y fo r it s evocativ e power . A recen t exampl e appeared i n Lingua Franca in a report o n researc h o n th e behavior s of German academics . The articl e states that a professor ha d "docu mented th e postwa r career s o f psychiatrists an d geneticist s involve d in gassin g thousand s o f cripple s an d schizophrenics " (Alle n 1996 , 37). Cripple is use d rathe r loosel y her e t o describ e peopl e wit h a broad rang e o f disabilities . Th e victim s o f Naz i slaughte r wer e people wit h menta l illness , epilepsy , chroni c illness , an d menta l retardation, a s well as people with physica l disabilities . Yet cripple is defined a s "on e tha t i s partially disable d o r unabl e t o us e a lim b o r limbs" {American Heritage Dictionary 1992 ) an d i s usuall y use d only t o refe r t o peopl e wit h mobilit y impairments . Becaus e cripple 16

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inadequately an d inaccuratel y describe s th e group , th e autho r o f the repor t i s likely to hav e chose n thi s ter m fo r it s effect . Cripple has als o bee n revive d b y som e i n th e disabilit y commu nity who refe r t o eac h othe r a s "crips" or "cripples. " A performanc e group wit h disable d actor s cal l themselve s th e "Wr y Crips. " "I n reclaiming 'cripple / disable d peopl e ar e takin g th e thin g i n thei r identity tha t scare s th e outsid e worl d th e mos t an d makin g i t a cause t o reve l i n wit h militan t self-pride " (Shapir o 1993 , 34). A recen t persona l a d i n th e Village Voice shows ho w "out " th e term is : TWISTED CRIP : Very sexy , full-figured disable d BiW F artis t sks fearless, fun , ora l BiW F fo r hot , no-string s nights . Wheelchair , tattoo, dom. Shaved a+ N/S . No men/sleep-overs. Cripple, gimp, an d freak a s use d b y th e disabilit y communit y have transgressiv e potential . The y ar e personall y an d politicall y useful a s a mean s t o commen t o n oppressio n becaus e the y asser t our righ t t o nam e experience . SPEAKING ABOU T OVERCOMIN G AN D PASSIN G

The popula r phras e overcoming a disability i s use d mos t ofte n t o describe someon e wit h a disabilit y wh o seem s competen t an d suc cessful i n som e way , i n a sentenc e somethin g lik e "Sh e ha s over come he r disabilit y an d i s a grea t success. " On e interpretatio n o f the phras e migh t b e tha t th e individual' s disabilit y n o longe r limit s her o r him, tha t shee r strengt h o r willpower ha s brought th e perso n to th e poin t wher e th e disabilit y i s n o longe r a hindrance. Anothe r implication o f th e phras e ma y b e tha t th e perso n ha s rise n abov e society's expectatio n fo r someon e wit h thos e characteristics . Be cause i t i s physicall y impossibl e t o overcome a disability , i t seem s that what i s overcome is the social stigma o f having a disability. Thi s idea i s reinforce d b y th e equall y confoundin g statemen t " I neve r

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17

think o f you a s disabled." An implicatio n o f these statements i s that the othe r member s o f th e grou p fro m whic h th e individua l ha s supposedly move d beyon d ar e not a s brave, strong, or extraordinar y as the perso n who ha s overcome that designation . The expressio n i s simila r i n ton e t o th e phras e tha t wa s onc e more commonl y use d t o describ e a n Africa n America n wh o wa s considered exceptiona l i n som e way : "He/sh e i s a credi t t o his/he r race." The implicatio n o f thi s phras e i s tha t th e "race " i s someho w discredited an d need s peopl e wit h extraordinar y talen t t o giv e th e group th e credibilit y tha t i t otherwis e lacks . I n eithe r case , talkin g about th e perso n wh o i s African America n o r talkin g abou t th e person wit h a disability , thes e phrase s ar e ofte n sai d wit h th e intention o f complimentin g someone . Th e complimen t ha s a dou ble edge . T o accep t it , on e mus t accep t th e implicatio n tha t th e group i s inferio r an d tha t th e individua l i s unlik e other s i n tha t group. The idea s imbedde d i n th e overcoming rhetoric ar e o f persona l triumph ove r a persona l condition . Th e ide a tha t someon e ca n overcome a disability has not bee n generate d withi n th e community ; it i s a wish fulfillmen t generate d fro m th e outside . I t i s a deman d that yo u b e pluck y an d resolute , an d no t le t th e obstacle s ge t i n your way . I f ther e ar e n o cur b cut s a t th e corne r o f th e stree t s o that peopl e wh o us e wheelchair s ca n ge t across , the n yo u shoul d learn t o d o wheelie s an d jum p th e curbs . I f ther e ar e n o sig n language interpreter s fo r dea f student s a t th e hig h school , the n yo u should stud y harder , rea d lips , an d sta y u p lat e copyin g note s from a classmate. Whe n disable d peopl e internaliz e th e deman d t o "overcome" rathe r tha n deman d socia l change , the y shoulde r th e same kin d o f exhaustin g an d self-defeatin g "Supe r Mom " burde n that feminist s hav e analyzed . The phras e overcome a disability may als o be a shorthand versio n of sayin g "someon e wit h a disabilit y overcam e man y obstacles. "

18 REASSIGNING MEANIN G

Tremblay (1996 ) use s tha t phras e whe n describin g behavior s o f disabled Worl d Wa r I I veteran s upo n returnin g t o th e community : "[T]heir mai n strategie s were t o develo p individualize d strategie s t o overcome th e obstacle s the y foun d i n th e community " (165) . Sh e introduces thi s ide a a s a mean s t o describ e ho w th e vet s relie d o n their ow n ingenuit y t o manag e a n inaccessibl e environmen t rathe r than deman d tha t th e communit y chang e t o includ e them . In bot h use s o f overcome, the individual' s responsibilit y fo r he r or hi s ow n succes s i s paramount. I f we , a s a society, plac e th e onu s on individual s wit h disabilitie s t o wor k harde r t o "compensate " fo r their disabilitie s o r t o "overcome " thei r conditio n o r th e barrier s i n the environment , w e hav e n o nee d fo r civi l right s legislatio n o r affirmative action . Lest I b e misunderstood , I don' t se e workin g hard , doin g well , or strivin g fo r health , fitness , an d well-being a s contradictory t o th e aims o f th e disabilit y right s movement . Indeed , th e movement' s goal i s t o provid e greate r opportunit y t o pursu e thes e activities . However, w e shouldn' t b e impelle d t o d o thes e becaus e w e hav e a disability, t o prov e t o som e socia l oversee r tha t w e ca n perform , but w e shoul d pursu e the m becaus e the y delive r thei r ow n reward s and satisfactions . A relate d concept , familia r i n Africa n America n cultur e a s wel l as i n lesbia n an d ga y culture , i s tha t o f passing. African American s who pas s fo r whit e an d lesbian s an d gay s wh o pas s fo r straigh t d o so fo r a variet y o f personal , social , an d ofte n economi c reasons . Disabled people , i f the y ar e abl e t o concea l thei r impairmen t o r confine thei r activitie s t o thos e tha t d o no t revea l thei r disability , have bee n know n t o pass . Fo r a membe r o f an y o f thes e groups , passing ma y b e a deliberat e effor t t o avoi d discriminatio n o r ostra cism, o r i t ma y b e an almos t unconscious , Herculea n effor t t o den y to onesel f th e realit y o f one' s racia l history , sexua l feelings , o r bodily state . The attemp t ma y b e a deliberate ac t t o protec t onesel f

19 REASSIGNING MEANIN G

from th e loathin g o f societ y o r ma y b e a n unchecke d impuls e spurred b y a n internalize d self-loathing . I t i s likel y tha t ofte n th e reasons entai l a n admixtur e o f any of these various parts . Henry Loui s Gates , Jr . (1996 ) spok e o f th e variou s reason s fo r passing i n a n essa y o n th e literar y criti c Anatol e Broyard . Broyar d was bor n i n Ne w Orlean s t o a famil y tha t identifie d a s "Negro. " His ski n wa s s o ligh t tha t fo r hi s entir e caree r a s "on e o f literar y America's foremos t gatekeepers " (66 ) th e majorit y o f peopl e wh o knew hi m di d no t kno w this . Hi s children , b y the n adults , learne d of his racial history shortly before h e died. Sandy Broyard, Anatole' s wife, remarke d tha t sh e though t tha t "hi s ow n persona l histor y continued t o b e painfu l t o him . . . . I n passing , yo u caus e you r family grea t anguish , bu t I als o thin k conversely , d o w e look a t th e anguish i t cause s th e perso n wh o i s passing? O r th e anguis h tha t i t was born ou t of? " (75) . When disable d peopl e ar e abl e t o pas s fo r nondisabled , an d do , the emotiona l tol l i t take s i s enormous . I hav e hear d peopl e tal k about hidin g a hearin g impairmen t t o classmate s o r colleague s fo r years, o r other s wh o manag e t o concea l part s o f thei r body , o r t o hide a prosthesis. Thes e actions , though , ma y no t resul t i n a fami ly's anguish ; the y may , i n fact , b e behavior s tha t th e famil y insist s upon, reinforces , o r otherwis e shame s th e individua l into . Som e disabled peopl e describ e ho w the y wer e subjecte d t o numerou s painful surgerie s an d medica l procedure s whe n the y wer e youn g not s o much , the y believe , t o increas e thei r comfor t an d eas e o f mobility a s t o fulfil l thei r families ' wis h t o mak e the m appea r "more normal. " Even whe n a disabilit y i s obviou s an d impossibl e t o hid e o n a n ongoing basis , familie s sometime s creat e minifiction s tha t disable d people ar e force d t o pla y alon g with . Man y peopl e hav e tol d m e that whe n famil y picture s were take n a s they were growin g up , the y were remove d fro m thei r wheelchairs , o r the y wer e show n onl y from th e wais t up , o r the y wer e exclude d fro m picture s altogether . 20 REASSIGNING MEANIN G

The message s are that thi s part o f you , you r disabilit y or th e symbo l of disability , you r wheelchair , i s unacceptable , or , i n th e las t case , you ar e no t a n acceptabl e membe r o f the family . I wa s recentl y i n a n elementar y schoo l whe n clas s picture s wer e taken, an d I learne d tha t i t i s th e custo m fo r al l th e childre n wh o use wheelchair s t o b e remove d fro m thei r chair s an d carrie d u p a few step s t o th e auditoriu m stag e an d place d o n foldin g chairs . I spoke wit h peopl e a t th e schoo l wh o sai d the y hav e though t abou t raising mone y t o buil d a ram p t o th e stage , bu t i n th e meantim e this was th e solution . I wondered, o f course , why the y hav e t o tak e pictures o n th e stag e whe n i t i s inaccessible . Th e familie s o f thes e children o r th e schoo l personne l migh t eve n persis t wit h thi s plan , believing tha t thes e action s hav e a positiv e effec t o n children , tha t they demonstrat e tha t th e disable d chil d i s "jus t lik e everybod y else." Bu t thes e fictions ar e based mor e clearl y on th e projections o f the adult s tha n o n th e unadulterate d feeling s o f th e child . Th e message tha t I rea d i n thi s action : Yo u ar e lik e everyon e else , bu t only a s long a s you hid e o r minimiz e you r disability . Both passin g and overcomin g tak e their toll . The loss of commu nity, th e anxiety , an d th e self-doub t tha t inevitabl y accompan y thi s ambiguous socia l positio n an d th e ambivalen t persona l stat e ar e th e enormous cos t of declaring disabilit y unacceptable . I t i s not surpris ing tha t disable d peopl e als o spea k o f "comin g out " i n th e sam e way that member s o f the lesbia n an d ga y community do . A woma n I me t a t a disabilit y studie s conferenc e no t lon g ag o sai d t o m e i n the cours e o f a conversatio n abou t persona l experience : "I' m five years old. " Sh e wen t o n t o sa y tha t despit e bein g significantl y disabled fo r man y years , she had reall y onl y recentl y discovere d th e disabled communit y an d allie d wit h it . Fo r her , "comin g out " wa s a process tha t bega n whe n sh e recognize d ho w her effor t t o "b e lik e everyone else " wa s no t satisfyin g he r ow n need s an d wishes . Sh e discovered othe r disable d peopl e an d bega n t o identif y clearl y a s disabled, an d the n purchase d a motorized scooter , which mean t sh e 21

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didn't hav e t o expen d enormou s energ y walking. Sh e tol d thi s tal e with gusto , obviousl y please d wit h th e psychi c an d physica l energ y she ha d gained . Storie s suc h a s her s provid e evidenc e o f th e per sonal burden s man y disable d peopl e liv e with. Sham e an d fea r ar e personal burdens , bu t i f thes e tale s ar e told , w e ca n demonstrat e how th e persona l i s indee d th e political . An d further , tha t th e unexamined connection s betwee n th e persona l an d politica l ar e th e curricular. NORMAL/ABNORMAL

Normal an d abnormal ar e convenien t bu t problemati c term s use d to describ e a person o r grou p o f people. These term s ar e often use d to distinguis h betwee n peopl e wit h an d withou t disabilities . I n various academi c discipline s an d i n commo n usage , normal an d abnormal assum e differen t meanings . I n psychometrics , norm o r normal ar e term s describin g individual s o r characteristic s tha t fal l within th e cente r o f the norma l distributio n o n whateve r variabl e is being measured . However , a s th e notio n o f normal i s applie d i n social scienc e context s an d certainl y i n genera l parlance , i t implie s its obverse— abnormal—and the y bot h becom e valu e laden . Often , those wh o ar e no t deeme d norma l ar e devalue d an d considere d a burden o r problem , o r ar e highly valued an d regarde d a s a potentia l resource. Two example s ar e the variables o f height an d intelligence . Short statur e an d lo w measure d intelligenc e ar e devalue d an d la beled abnormal , an d peopl e wit h thos e characteristic s ar e consid ered disabled . Tal l peopl e (particularl y males ) an d hig h score s o n I Q test s ar e valued , and , althoug h no t norma l i n th e statistica l sense, are not labele d abnorma l o r considere d disabled. 3 Davis (1995 ) describe s th e historica l specificit y o f th e us e o f normal an d thereb y call s attentio n t o th e socia l structure s tha t are dependen t o n it s use . "[T]h e ver y ter m tha t permeate s ou r contemporary life—th e normal—i s a configuratio n tha t arise s i n a particular historica l moment . I t i s par t o f a notio n o f progress , o f 22 REASSIGNING MEANIN G

industrialization, an d o f ideologica l consolidatio n o f th e powe r o f the bourgeoisie . Th e implication s o f the hegemon y o f normalcy ar e profound an d exten d int o th e ver y hear t o f cultura l production " (49). The us e o f the term s abnormal an d normal als o move s discours e to a high leve l o f abstraction , thereb y avoidin g concret e discussio n of specifi c characteristic s an d increasin g ambiguit y i n communica tion. I n interactions , ther e i s a n assume d agreemen t betwee n speaker an d audienc e o f wha t i s norma l tha t set s u p a n aur a o f empathy an d "us-ness. " This proces s "enhance s socia l unit y amon g those who fee l the y are normal" (Freilich , Raybeck , an d Savishinsk y 1991, 22) , necessarily excludin g th e othe r o r abnorma l group . These dynamic s ofte n emerg e i n discussion s abou t disable d peo ple whe n comparison s ar e made , fo r instance , betwee n "th e nor mal" an d "th e hearin g impaired, " o r "th e norma l children " an d "the handicapped children. " The firs t exampl e contrasts tw o group s of people ; on e define d b y a n abstrac t an d evaluativ e ter m (th e normal), th e othe r b y a mor e specific , concrete , an d nonevaluativ e term (th e hearing impaired) . I n th e second comparison , th e "handi capped children " ar e labele d abnorma l b y default . Settin g u p thes e dichotomies avoid s concret e discussio n o f th e way s th e tw o group s of childre n actuall y differ , devalue s th e childre n wit h disabilities , and force s a n "u s an d them " divisio n o f the population . The absolut e categorie s normal an d abnormal depen d o n eac h other fo r thei r existenc e an d depen d o n th e maintenanc e o f th e opposition fo r thei r meaning . Sedgwic k (1990) , i n Epistemology of the Closet, comments o n a simila r patter n i n th e force d choic e categories homosexua l an d heterosexual : [Categories presente d i n a culture as symmetrical binar y oppositions—heterosexual/homosexual, i n thi s case—actually subsist i n a more unsettle d an d dynami c taci t relatio n accordin g t o which, first, ter m B i s no t symmetrica l wit h bu t subordinate d t o ter m 23

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A; but , second , th e ontologicall y valorize d ter m A actuall y de pends fo r it s meanin g o n th e simultaneou s subsumptio n an d exclusion o f ter m B ; hence , third , th e questio n o f priorit y be tween th e suppose d centra l an d th e suppose d margina l categor y of each dya d i s irresolvably unstable , a n instabilit y cause d b y the fact tha t ter m B is constituted a s at once internal an d externa l t o term A. (9-10 ) Despite th e instabilit y an d th e relationa l natur e o f th e designa tions normal an d abnormal, the y ar e use d a s absolut e categories . They hav e achieve d thei r certaint y b y associatio n wit h empiricism , and the y suffe r fro m empiricism' s reductiv e an d simplifyin g ten dencies. Their powe r an d reac h ar e enormous. They affect individu als' mos t privat e deliberation s abou t thei r wort h an d acceptability , and the y determin e socia l positio n an d societa l respons e t o behav ior. Th e relationshi p betwee n abnormalit y an d disabilit y accord s t o the nondisable d th e legitimac y an d potenc y denie d t o disable d people. And, centra l t o ou r concern s here , th e reificatio n o f normal and abnormal structure s curriculum . Course s wit h title s suc h a s "Abnormal Psychology, " "Sociolog y o f Deviance, " "Specia l Educa tion," an d "Psychopathology " assum e th e interna l consistenc y o f a curriculum focuse d o n "th e abnormal " an d depen d o n th e curricu lum o f th e "normal " bein g taugh t elsewhere . I n fact , thi s organiza tion o f knowledge implicitl y suggests that th e res t of the curriculu m is "normal. " Rosemarie Garlan d Thomso n (1997 ) ha s coine d th e ter m the normate, which, lik e nondisabled y is useful fo r markin g th e unexam ined center . "Thi s neologis m name s th e veile d subjec t positio n o f cultural self , th e figure outline d b y th e arra y o f devian t other s whose marke d bodie s shor e u p th e normate' s boundaries . Th e ter m normate usefull y designate s th e socia l figure throug h whic h peopl e can represen t themselve s a s definitive huma n beings " (8) . B y meet ing normal on som e o f it s own terms , normate inflect s it s root , an d 24 REASSIGNING MEANIN G

challenges th e validity , indee d th e possibility , o f normal . A t th e same time , it s ironic twis t give s a more flavorful readin g o f th e ide a of normal . PASSIVITY VERSU S CONTRO L

Language tha t convey s passivity an d victimization reinforce s certai n stereotypes whe n applie d t o disable d people . Som e o f th e stereo types tha t ar e particularl y entrenche d ar e tha t peopl e wit h disabili ties ar e mor e dependent , childlike , passive , sensitive , an d miserabl e and ar e les s competen t tha n peopl e wh o d o no t hav e disabilities . Much o f th e languag e use d t o depic t disable d peopl e relate s th e lack o f contro l t o th e perceive d incapacities , an d implie s tha t sad ness and miser y ar e th e produc t o f the disablin g condition . These deterministi c an d essentialis t perspective s flourish i n th e absence o f contradictor y information . Historically , disable d peopl e have ha d fe w opportunitie s t o b e activ e i n society , an d variou s social an d politica l force s ofte n undermin e th e capacit y fo r self determination. I n addition , disable d peopl e ar e rarel y depicte d o n television, i n films , o r i n fiction a s bein g i n contro l o f thei r ow n lives—in charg e o r activel y seekin g ou t an d obtainin g wha t the y want an d need . Mor e often , disable d peopl e ar e depicted a s paine d by thei r fat e or , i f happy, i t i s throug h persona l triump h ove r thei r adversity. Th e adversit y i s no t depicte d a s lac k o f opportunity , discrimination, institutionalization , an d ostracism ; i t i s the persona l burden o f their ow n bod y o r mean s o f functioning . Phrases suc h a s the woman is a victim of cerebral palsy implies a n active agen t (cerebra l palsy ) perpetratin g a n aggressiv e ac t o n a vulnerable, helples s "victim. " Th e us e o f th e ter m victim, a wor d typically use d i n th e contex t o f crimina l acts , evoke s th e relation ship betwee n perpetrato r an d victim . Usin g thi s languag e attribute s life, power , an d intentio n t o th e conditio n an d disempower s th e person wit h th e disability , renderin g hi m o r he r helples s an d pas sive. Instead , i f there i s a particular nee d t o not e wha t a n individu 25 REASSIGNING MEANIN G

al's disabilit y is , saying the woman has cerebral palsy describes solel y the characteristi c o f importanc e t o th e situation , withou t imposin g extraneous meaning . Grover (1987 ) analyze s th e wor d victim a s use d t o describ e people wit h AIDS . Sh e note s tha t th e ter m implie s fatalism , an d therefore "enable[s ] th e passiv e spectato r o r th e AID S 'spectacle ' to remai n passive. " Us e o f th e ter m ma y als o expres s th e uncon scious wis h tha t th e peopl e wit h AID S ma y hav e bee n "complici t with, t o hav e courted , thei r fate " (29) , i n whic h cas e th e individ ual woul d b e see n a s a victim o f he r o r hi s ow n drives . Thi s i s particularly apparen t whe n th e phras e innocent victim i s use d t o distinguish thos e wh o acquir e HI V fro m bloo d transfusion s o r other medica l procedure s fro m thos e wh o contrac t HI V fro m sex ual contac t o r share d needles . Thi s analysi s i s als o pertinen t t o people wit h othe r disabilitie s becaus e a numbe r o f belie f systems consider disability , o r som e disabilities , a s punishmen t fo r si n i n this o r a former life . Disabled peopl e ar e frequentl y describe d a s suffering from o r afflicted with certai n conditions . Sayin g tha t someon e i s suffering from a condition implie s tha t ther e i s a perpetual stat e o f suffering , uninterrupted b y pleasurabl e moment s o r satisfactions . Afflicted carries simila r assumptions . Th e ver b afflict share s wit h agonize y excruciatey rack, torment, an d torture the centra l meanin g "t o brin g great har m o r sufferin g t o someone " {American Heritage Dictionary 1992, 30) . Althoug h som e peopl e ma y experienc e thei r disabilit y this way , thes e term s ar e no t use d a s descriptor s o f a verifie d experience bu t ar e projecte d ont o disability . Rathe r tha n assum e suffering i n th e descriptio n o f the situation , i t i s more accurat e an d less histrioni c t o sa y simpl y tha t a perso n has a disability. Then , wherever i t i s relevant , describ e th e natur e an d exten t o f th e diffi culty experienced. M y argumen t her e isn't t o eliminat e description s of suffering bu t t o be accurate i n thei r appointment . I t i s interestin g that AID S activist s intentionall y us e th e phras e living with AIDS 26 REASSIGNING MEANIN G

rather tha n dying from AIDS, no t t o den y th e realit y o f AIDS bu t to emphasiz e tha t peopl e ar e ofte n activel y engage d i n livin g eve n in th e fac e o f a serious illness . The ascriptio n o f passivit y ca n b e see n i n languag e use d t o describe th e relationshi p betwee n disable d peopl e an d thei r wheel chairs. Th e phrase s wheelchair bound o r confined to a wheelchair are frequentl y see n i n newspaper s an d magazines , an d hear d i n conversation. A mor e puzzlin g varian t wa s spotte d i n Lingua Franca, which describe d th e forme r governo r o f Alabama , Georg e Wallace, a s th e "slumped , wheelchair-ridde n 'Guv'nah ' " (Zalewsk i 1995, 19) . Th e choic e her e wa s t o pain t th e wheelchai r use r a s ridden, meanin g "dominated , harassed , o r obsesse d by " {American Heritage Dictionary 1992) , rathe r tha n th e ride r i n th e wheelchair . The variou s term s impl y tha t a wheelchai r restrict s th e individual , holds a person prisoner . Disable d peopl e ar e more likel y to say tha t someone uses a wheelchair. The latte r phras e no t onl y indicate s th e active natur e o f th e use r an d th e positiv e wa y tha t wheelchair s increase mobilit y an d activit y bu t recognize s tha t peopl e ge t i n an d out o f wheelchair s fo r differen t activities : drivin g a car , goin g swimming, sittin g o n th e couch , or , occasionally , fo r makin g love . A recen t ora l histor y conducte d wit h disable d Canadia n Worl d War I I veteran s an d othe r disable d peopl e wh o ar e contemporarie s of the vets recount s thei r memorie s o f th e transitio n fro m hospital style wicker wheelchairs use d t o transport patient s t o self-propelled , lighter-weight, foldin g chair s that wer e provided t o disabled people , mostly t o veterans , i n th e year s following th e war . Prio r t o th e ne w chairs, on e ma n recall s tha t "on e wa s ofte n confine d t o be d fo r long period s o f time . . . . Ther e wer e a fe w cerebra l pals y chap s there. . . . I f the y transgresse d an y rul e . . . they' d tak e thei r wheelchairs awa y from the m an d leav e the m i n be d fo r tw o weeks " (Tremblay 1996 , 153) . I n thi s an d othe r interview s th e valu e o f wheelchairs i s revealed . A ve t describe d ho w th e medica l staff' s efforts wer e geare d towar d gettin g veteran s t o wal k wit h crutches , 27

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but whe n th e vet s discovere d th e self-propelle d chair s the y realize d "it didn' t mak e muc h sens e spendin g al l tha t energ y coverin g a short distanc e [o n crutches ] . . . when yo u coul d d o i t quickly an d easily with a wheelchair. . . . I t didn' t tak e lon g for peopl e t o ge t over th e ide a tha t walkin g wa s tha t essential " (158-59) . Anothe r veteran recalle d ho w th e staff' s emphasi s o n gettin g th e me n t o walk "delaye d ou r rehabilitatio n fo r month s an d months " (159) . The staf f obviousl y understoo d th e valu e o f th e wheelchai r t o disabled people ; otherwis e the y woul d no t hav e use d i t a s a mean s of control , ye t the y resiste d purchasin g th e ne w self-pus h chair s fo r some tim e after the y were made available . It i s that typ e of manipu lation an d control , alon g with architectura l an d attitudina l barriers , that confin e people . I t i s not wheelchairs . MULTIPLE MEANING S

Are invalidy wit h th e emphasi s o n th e first syllable , an d invalidy with th e emphasi s o n th e second , synonym s o r homonyms ? Doe s the identica l housin g o f patient, th e adjective , an d patient, th e noun, conflat e th e tw o meanings ? Di d thei r conceptua l relationshi p initially determin e thei r unifor m casing ? For instance , invalid i s a designatio n use d t o identif y som e disabled people . Th e ter m i s seen mos t prominentl y o n th e side s o f vans use d t o transpor t peopl e with mobilit y impairments . Disable d people, desperat e fo r accessibl e transportation , mus t us e van s wit h the dubiou s appellatio n "Invalid Coach" printed i n bol d letter s o n the side . Asid e fro m thi s bein g a fertil e sourc e o f joke s abou t the aptnes s o f thes e notoriousl y ba d transportatio n service s bein g identified a s "not factuall y o r legally valid; falsel y base d o r reasoned ; faulty" {American Heritage Dictionary 1992) , thos e o n th e insid e o f the bu s suffe r th e humiliatio n o f bein g writte n of f s o summarily . Both invalids shar e th e Lati n roo t invalidus, whic h mean s weak . I t could b e argued tha t som e disabilitie s d o resul t i n weakening o f th e body, or , mor e likely , part s o f th e body , bu t th e totalizin g noun , 28 REASSIGNING MEANIN G

invalid, doe s no t confin e th e weaknes s t o th e specifi c bodil y func tions; i t i s more encompassing . The homonymi c patient/patient y is , I think , no t coincidenta l o r irrelevant. Th e nou n patient i s a rol e designatio n tha t i s alway s relational. A patien t i s understoo d t o belon g t o a docto r o r othe r health car e professional , o r mor e generall y t o a n institution . A s a noun, patient i s a neutra l descriptio n o f th e rol e o f "on e wh o receives medica l attention , care , o r treatment " {American Heritage Dictionary 1992) . Th e adjectiv e patient move s beyon d th e noun' s neutral designatio n t o describ e a person wh o i s capable o f "bearin g or endurin g pain , difficulty , provocation , o r annoyanc e wit h calm ness" a s wel l a s "toleran t . . . perseverin g . . . constan t . . . no t hasty" {American Heritage Dictionary 1992) . Th e "good " patien t i s one wh o doe s no t challeng e th e authorit y o f th e practitione r o r institution an d wh o complie s wit h th e regime n se t ou t b y th e expert, i n othe r word s a patient patient . Disable d people , who hav e often spen t a grea t dea l o f tim e a s patients , discus s th e way s tha t we have been socialize d i n th e medica l cultur e t o b e compliant, an d that ha s ofte n undermine d ou r abilit y t o challeng e authorit y o r t o function autonomously . Further , th e descriptio n o f disabled peopl e as patients i n situation s wher e we ar e not , reinforce s thes e ideas . REFLECTIONS O N THE DIS IN DISABILIT Y

Before discussin g th e prefi x dis> let' s examin e a simila r boun d morpheme tha t convey s meanin g an d significantl y modifie s th e words i t i s attache d to . Th e suffi x ette, when appende d t o nouns , forms word s meanin g smal l o r diminutive , a s in kitchenette; female, as in usherette; or imitation o r inferio r kind , a s in leatherette {American Heritage Dictionary 1992) . Thes e variou s meaning s o f ette slip around i n ou r mind s t o influenc e ho w w e interpre t othe r word s with th e sam e suffix . So , fo r instance , althoug h th e word leatherette is use d t o tel l u s i t i s no t th e rea l thin g an d a n inferio r versio n o f leather, usherette becomes, b y association , no t onl y th e femal e ver 29

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sion o f ushe r bu t denote s a poo r imitation . Usherette becomes, lik e kitchenette, th e diminutiv e version . Thes e variou s meaning s tumbl e into on e another , propagatin g ne w meanings , unintende d an d imprecise. I recentl y me t a woman wh o tol d m e tha t sh e ha d bee n a Rockett e a t Radi o Cit y Musi c Hal l i n Rockefelle r Cente r fo r twenty years . I realize d tha t thi s strin g o f high-kicking , synchro nized dancin g women ar e perpetuall y cas t a s the smaller , imitation , inferior an d femal e counterpart s o f th e grea t mal e barons , th e Rockefellers. The prefi x dis, lik e th e suffi x ette, ha s similarl y unchecke d im pulses. Althoug h ette qualifies it s bas e an d reduce s i t t o th e mor e diminutive an d les s vali d version , a relationshi p i s maintaine d be tween th e bas e an d it s amende d version . However , th e prefi x dis connotes separation , takin g apart , sunderin g i n two . The prefi x ha s various meaning s suc h a s not , a s i n dissimilar; absenc e of , a s i n disinterest; opposite of , a s i n disfavor; undo, d o th e opposit e of , a s in disarrange; an d depriv e of , a s i n disfranchise. The Lati n roo t dis means apart , asunder . Therefore , t o us e th e ver b disable, means, i n part, t o depriv e o f capabilit y o r effectiveness . Th e prefi x create s a barrier, cleavin g in tw o ability and it s absence, it s opposite. Disabil ity is the "not " condition , th e repudiatio n o f ability . Canguilhem (1991) , i n hi s exploration s o f th e norma l an d th e pathological, recognize s th e wa y tha t prefixe s signa l thei r relation ship t o th e words the y modify . H e assert s tha t the pathological phenomen a foun d i n livin g organisms ar e nothing more tha n quantitativ e variations, greater o r lesse r accordin g to correspondin g physiologica l phenomena . Semantically , th e pathological i s designate d a s departin g fro m th e norma l no t s o much b y a- or dys- a s by hyper- or hypo-. . . . [T]hi s approach i s far from considerin g health and sickness as qualitatively opposed , or as forces joined i n battle. " (42 )

30

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Ette, hyper and hypo, an d dis have semanti c consequences , but , moreover, eac h recapitulate s a particula r socia l arrangement . Th e suffix ette no t onl y qualifie s th e meanin g o f th e roo t wor d i t i s attached t o bu t speak s o f th e unequa l ye t dynami c relationshi p between wome n an d men , i n whic h "woma n was , a s we se e i n th e profoundly influentia l work s o f Aristotle, no t th e equa l opposit e o f man bu t a failed versio n o f the supposedl y definin g type " (Minnic h 1990, 54) . Th e medica l prefixe s hyper an d hypo ar e typicall y attached t o medica l condition s tha t ar e temporar y o r circum scribed. Peopl e wit h thos e condition s ar e no t sociall y marke d an d separated a s ar e thos e wit h th e mor e pronounced , an d lon g stand ing condition s know n a s disabilities . Wit h hyper and hypo condi tions, ther e i s les s semanti c an d socia l disjuncture . However , th e construction o f dis/ability doe s no t impl y th e continuu m approac h Canguilhem finds i n diagnosti c categories . Dis i s th e semanti c reincarnation o f th e spli t betwee n disable d an d nondisable d peopl e in society . Yet women and men with disabilities, disabled people, an d th e disability community ar e term s o f choic e fo r th e group . W e hav e decided t o reassig n meanin g rathe r tha n choos e a ne w name . I n retaining disability w e ru n th e ris k o f preservin g th e medicalize d ideas attendan t upo n i t i n mos t people' s ide a o f disability . Wha t I think will help u s out o f the dilemm a i s the namin g o f the politica l category i n which disability belongs. Women i s a category of gender, and blac k o r Latino/ a ar e categorie s o f race/ethnicity, and i t i s th e recognition o f thos e categorie s tha t ha s fostere d understandin g o f the political meanin g of women and black. Although race and gender are no t perfec t term s becaus e the y retai n biologica l meaning s i n many quarters , th e categorie s ar e increasingly understoo d a s axes o f oppression; axe s alon g whic h powe r an d resource s ar e distributed . Although thos e o f u s withi n th e disabilit y communit y recogniz e that powe r i s distribute d alon g disabilit y lines , th e namin g an d

31

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recognition o f th e axi s will b e a significan t ste p i n gainin g broade r recognition o f th e issues . Further , i t wil l enric h th e discussio n o f the intersection s o f the axes of class, race, gender an d sexua l orienta tion, an d disability . Constructing th e axi s o n whic h disable d an d nondisable d fal l will be a critical step i n markin g al l points alon g it . Currently, ther e is increase d attentio n t o th e privilege d point s o n th e continu a o f race, gender , an d sexua l orientation . Ther e i s growin g recognitio n that th e white , th e male , an d th e heterosexua l position s nee d t o b e noted an d theorized . Similarly , i t i s importan t t o examin e th e nondisabled positio n an d it s privileg e an d power . I t i s no t th e neutral, universa l positio n fro m whic h disable d peopl e deviate , rather, i t i s a categor y o f peopl e whos e powe r an d cultura l capita l keep the m a t th e center . In thi s book , though , disable d people' s perspective s ar e kep t central an d ar e mad e explicit , partl y t o commen t o n ho w margina l and obscur e the y typicall y are, and partl y t o sugges t th e disciplinar y and intellectua l transformatio n consequen t o n puttin g disabilit y studies a t th e center .

NOTES

1. Variou s author s hav e discusse d issue s relate d t o definition s o f disability. See Wendell (1996) , Longmor e (1985b , 1987) , an d Hah n (1987), an d als o th e June Isaacso n Kaile s (1995 ) monograp h Language Is More Than a Trivial Concern! which i s available fro m th e Institute o n Disabilit y Culture , 226 0 Sunris e Poin t Road , La s Cruces, New Mexico 88011. 2. Th e definitio n o f disability unde r th e American s wit h Disabilitie s Act is consistent with th e sociopolitical mode l employe d i n disability studies. A person i s considered t o have a disability if he or she: • ha s a physical or mental impairmen t tha t substantially limits one or more of his or her major lif e activities;

32 REASSIGNING M E A N I N G

• ha s a record of such an impairment; or • i s regarded as having such an impairment. The las t tw o part s o f thi s definitio n acknowledg e tha t eve n i n the absenc e o f a substantiall y limitin g impairment , peopl e ca n b e discriminated against. For instance, this may occur because someone has a facial disfiguremen t o r has, or is suspected o f having, HIV or mental illness . Th e AD A recognize s tha t socia l forces , suc h a s myths an d fear s regardin g disability , functio n t o substantially limi t opportunity. 3. I am indebted t o my colleague John O'Neil l fo r hi s input o n thes e ideas about the use of the term normal. 4. Se e June Isaacso n Kailes' s (1995) , Language Is More Than a Trivial Concern! for a discussion on language use.

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3 DIVIDED SOCIET Y I have the righ t when I go out an d pa y good mone y for a meal t o enjoy it . The sight o f a woman i n a wheelchair with foo d runnin g down her chin would make me throw up. I believe my rights should be respected a s much a s the rights o f the person i n th e wheelchair . . . maybe even more so, because I am normal and she is not. In m y opinion, restaurant s should hav e a special section fo r handi capped people—partially hidden by palms or other greenery so they are not seen by other guests. —excerpts from tw o letters printed in an Ann Landers column, spring 1987

I

No perso n wh o i s diseased, maimed , mutilate d o r i n an y way deformed so as to be an unsightly or disgusting object or improper person to be allowed in or on the public ways or other public places in this city, shall therein or thereon expose himself to public view, under penalty of not less than one dollar nor more than fifty dollars for each offense. —fro m th e Municipal Code of the City of Chicago

t i s i n th e forma l an d informal , th e explici t an d th e tacit , th e overt and th e covert tha t societ y works t o divide u p the huma n community an d oppres s som e o f it s members . Th e abov e exampl e of publi c rule s an d privat e thought s (reveale d i n th e safet y o f anonymity) ma y no t see m t o hav e muc h force . Federa l la w prohib its suc h discrimination , an d publi c expressio n o f thes e sentiment s would b e scorne d i n man y circle s an d th e speaker s brande d a s unsympathetic o r uncharitable , no t t o mentio n unsophisticated . But th e underlyin g etho s ha s no t dissolve d wit h shirtin g practices ; it remain s a virulent forc e wit h ne w manifestations .

As Youn g (1990 ) notes : The objectificatio n an d over t dominatio n o f despised bodie s tha t obtained i n th e nineteent h century , however , ha s recede d i n ou r time, an d a discursiv e commitmen t t o equalit y fo r al l ha s emerged. Racism , sexism , homophobia , ageism , an d ableism , I argue , hav e no t disappeare d wit h tha t commitment , bu t have gon e underground , dwellin g i n everyda y habit s an d cul tural meaning s o f whic h peopl e ar e fo r th e mos t par t unaware . (124) T o Young' s comment s I woul d ad d tha t i n additio n t o th e everyday habit s an d cultura l meanings , ther e remai n policie s an d practices tha t serv e t o contro l an d marginaliz e disable d people . Unfortunately, thes e barrier s t o th e integratio n o f disable d peopl e are ofte n no t full y visible , a t leas t no t t o th e untraine d observer . They functio n lik e th e "glas s ceiling " tha t wome n com e u p agains t when attemptin g t o advanc e i n business . Bu t i t woul d b e a mistak e to sa y tha t th e barrier s tha t wome n o r disable d peopl e encounte r are trul y invisible . Fo r instance , th e polic y t o exclud e wome n fro m private club s wher e busines s deal s ar e clinche d migh t b e mad e visible b y lookin g a t th e bylaw s o f suc h clubs , o r b y testin g th e admissions practices . Th e practice s withi n th e club s ca n b e reveale d by conductin g researc h o n th e behavior s an d habit s o f thei r mem bers t o find ou t ho w the y transac t busines s whil e seemin g t o tal k about golf . O f cours e i t woul d tak e extraordinar y method s t o expose al l th e structura l inequitie s tha t exis t i n th e busines s worl d and othe r significan t arena s tha t privileg e som e groups ' participa tion an d success . Moreover , a s Mar x an d other s hav e instructe d us , these loca l event s ar e often controlle d b y force s beyon d th e purvie w of thos e actin g a t tha t site , makin g i t eve n mor e difficul t t o gai n access t o th e informatio n (Gorelic k 1996) . Nevertheless , i t i s im portant t o recogniz e tha t b y callin g th e barrier s invisibl e w e ru n th e

DIVIDED SOCIET Y

35

risk o f implying tha t the y are so amorphous an d intangibl e tha t w e can't documen t the m an d can' t chang e them . A watchfu l outside r migh t recogniz e som e o f th e mor e obviou s barriers tha t exclud e disable d peopl e fro m participatio n i n societ y but ma y hav e th e fals e impressio n tha t ther e ar e fe w hidde n barri ers. I t ma y see m tha t i f ramp s ar e buil t t o ge t int o al l th e pollin g places, sig n languag e interpreter s ar e provide d a t publi c functions , and th e Constitutio n i s transcribed int o Braille , w e wil l hav e don e away wit h th e inequities . Bu t redressin g second-clas s citizenship , 66 percen t unemployment , incarceratio n i n institutions , an d sepa rate an d unequa l educatio n will tak e mor e tha n thes e mechanica l changes (Shapir o 1993) . Although a n enormou s amoun t o f researc h i s yet t o b e don e t o document th e comple x histor y o f thes e practice s an d t o catalogu e their curren t manifestations , w e ca n revie w wha t i s alread y know n about humans ' respons e t o disabilit y t o se e tha t disabilit y ha s bee n conceptualized an d responde d t o i n a variet y o f way s throughou t history an d acros s huma n cultures . I t i s no t a singula r history . There isn't , a s some migh t imagine , a clear strea m o f progress fro m prehistory t o th e presen t moment . No r i s i t accurat e t o valoriz e the Unite d State s an d othe r Westernize d countrie s fo r exemplar y practices an d a n enlightene d vision . This chapte r examine s th e variation s i n socia l arrangement s tha t have existe d throughou t histor y an d currentl y exis t aroun d th e world. O f course , i t i s not possibl e t o provid e a complete histor y o f humans' respons e t o disability . Som e significan t example s hav e been chose n i n orde r t o demonstrat e th e variatio n an d t o expos e some o f th e problem s tha t hav e occurre d i n th e documentatio n and interpretatio n o f tha t history . Disable d peopl e hav e existe d predominantly a s marginal figures, thei r contribution s an d perspec tives ar e no t generall y noted . Researcher s outsid e disabilit y studie s have no t bee n activel y intereste d i n thi s histor y no r i n examinin g

36 D I V I D E D SOCIET Y

the meanin g an d functio n o f disabilit y i n th e live s o f the fe w well known peopl e with disabilities . The disabilit y histor y tha t doe s exist i s heavily dominated b y th e perspectives o f scholar s fro m th e Unite d State s an d Wester n Eu rope, whethe r the y ar e lookin g a t thei r ow n country' s practice s o r others', leavin g eve n mor e obscur e th e perspective s fro m th e re mainder o f th e world . Further , thes e report s usuall y d o no t mak e differentiations alon g gender, class , or rac e lines; therefore, man y o f the statement s mad e abou t "treatmen t o f disable d people " ar e no t truly fo r th e whol e population . Th e mos t fundamenta l problem , though, i s tha t disable d people' s voice s ar e almos t completel y ab sent fro m thi s picture , an d s o th e understandin g o f disable d peo ple's plac e i n thes e situation s i s filtered throug h th e experienc e o f people who hav e neve r bee n i n tha t place . VARIATIONS

Although ther e ar e variation s acros s tim e an d culture s i n respons e to disability , ther e ar e pattern s tha t ca n b e traced . A n articl e b y Hanks an d Hank s writte n i n 194 8 provide s a usefu l startin g poin t for organizin g th e availabl e evidenc e int o a typolog y o r classifica tion system . Whil e thei r study , The Physically Handicapped in Certain Non-Occidental Societies, predates th e forma l presentatio n o f social model s o f disability b y som e thirt y years , i t i s focused o n th e social variable s tha t structur e participatio n o f disable d peopl e i n selected societies . I t i s a strengt h o f th e repor t tha t the y looke d primarily at socia l participatio n rathe r tha n a t treatmen t o r car e provided t o disable d people , an d tha t the y looke d to th e socia l structure fo r th e explanatio n o f th e degre e o f integration o r partici pation o f disable d peopl e i n eac h societ y rathe r tha n t o th e natur e of th e disabilit y itsel f o r th e psychologica l makeu p o f disable d individuals. Astonishingly , the y als o i n som e instance s poin t ou t class an d gende r difference s i n disabilit y experienc e i n instructiv e

37

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ways. Ther e ar e als o som e limitation s t o thei r schema , t o thei r interpretations, an d to the data the y looke d t o for evidence . Hanks an d Hank s analyze d practice s i n a numbe r o f cultures , with a particular interes t i n respons e t o physica l disabilit y i n "nonOccidentaT societies . A limitatio n o f thei r material , therefore , fo r the presen t analysi s i s tha t practice s relate d t o peopl e wit h othe r disabilities ar e no t included ; relativel y fe w countrie s wer e actuall y studied; an d Westernize d and/o r industrialize d countrie s ar e no t included. Th e fe w gende r an d clas s difference s the y di d not e ar e inadequate t o the complexity tha t exists , and, further, thei r descrip tions fal l shor t o f th e meanin g tha t thes e difference s hav e fo r th e people the y describe. Another limitatio n i s that thei r conceptualiza tion o f response t o disability into th e five domains the y chose limit s the rang e o f practices tha t ca n be studied. Therefore , I hav e adde d a sixt h categor y an d reworke d som e o f th e descriptiv e materia l t o include a n eve n broade r rang e o f dat a an d mor e contemporar y examples. In a number o f places, I have indicated way s that a mor e explicit an d differentiated schem e could b e fashioned fro m th e data and theoretica l formulation s tha t hav e emerge d sinc e thei r study . These caveat s aside , th e Hankses ' origina l categories , Pariah , Eco nomic Liability , Toleran t Utilization , Limite d Participation , an d Laissez-faire, a s amended, ar e described below , alon g with th e sixth category, Activ e Participatio n an d Accommodatio n tha t I hav e added. 1 . PARIA H

The first category , Pariah , i s describe d b y Hank s an d Hank s (1948) a s cultures i n whic h disable d peopl e ar e "denie d al l claim s to succo r b y the protective grou p an d [are ] deemed a threat t o th e group itself " (13) . I have amended thi s to read tha t disable d peopl e are denie d mos t i f no t al l claim s t o succo r an d t o right s b y th e dominant nondisable d majorit y an d ar e deeme d a threa t t o th e group itself . Thi s revisio n alter s th e categor y i n thre e significan t 38

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ways. Th e additio n o f "rights " an d "dominan t group " make s ex plicit th e powe r differential s i n thes e situation s i n whic h nondisa bled peopl e determine what resources , if any, will be made availabl e to disable d people . I have eliminated th e Hankses ' ter m "protectiv e group" becaus e i t assume s tha t protectio n i s th e desire d behavior . Although th e definitio n o f pariah i n man y dictionarie s i s solel y "social outcast, " typica l usag e an d othe r dictionarie s als o incorpo rate mor e activ e and virulen t meanings , suc h a s Merriam Webster' s "despised b y society. " Throughou t histor y ther e hav e bee n group s whose religiou s belief s o r socia l custom s sanctione d practice s tha t were harmful , an d ofte n lethal , fo r disable d people . Therefore , th e practices discusse d i n thi s categor y reflec t mor e tha n th e passiv e meaning, tha t th e individua l i s a n outcast ; rather , th e example s support th e stanc e o f "castin g out " o r harmin g thes e despise d members o f society . Denying o r withholdin g resource s o r protectio n i s on e se t o f responses t o disable d peopl e deeme d pariahs . Hank s an d Hank s (1948) stat e tha t th e practic e o f denyin g al l protectio n an d car e i s "most frequen t i n India " (13) , wher e th e famil y i s pu t a t ris k b y having a disable d membe r becaus e it s socia l positio n i s thereb y threatened. Th e famil y ma y den y th e individua l protection . How ever, a woma n i s tol d t o car e for , indee d worship , he r disable d husband eve n i f his family abandon s him . Women wit h disabilities , it seems , woul d no t expec t th e reciproca l respons e fro m thei r hus bands. Directly harmin g o r killin g disable d peopl e i s a n eve n mor e aggressive mean s o f managin g th e perceive d threat . I t i s ironic tha t the Hankses , writing in th e late 1940s , pointed towar d India , whe n evidence o f what wa s probabl y th e mos t comprehensiv e exampl e o f systematic violenc e towar d disable d peopl e wa s known . Grante d their focu s was on "non-Occidental " societies , but the y wrote "mos t frequent i n India " an d othe r phrase s i n a n absolut e manner , im plying it s unequivoca l status . Naz i German y too k specifi c action s 39

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to eliminat e disable d peopl e an d succeede d i n annihilatin g 200,00 0 "disabled men , wome n an d childre n . . . 'Lebensunwerte s Leben'—life unworth y o f life—wa s th e concep t Naz i doctor s use d to justify thei r practic e of direct medica l euthanasia" (Shapir o 1993 , 271). Disable d peopl e threatene d th e ide a o f Arya n perfection , constructed aroun d a ver y narro w ban d o f acceptabl e behavior , appearance, an d geneti c makeup . (Th e contribution s o f th e Unite d States t o th e earl y eugenic s movemen t o n whic h Naz i practice s were buil t i s discussed i n th e nex t chapter. ) A mos t profoun d exampl e o f withholding car e an d "succor " ca n be see n i n th e Unite d States , i n th e histor y o f many o f ou r institu tions an d asylums . I n th e earl y 1970 s Gerald o River a describe d th e conditions a t th e Willowbroo k Stat e Schoo l tha t wer e "no t unlik e Nazi deathcamps . A t Willowbrook , River a tol d hi s viewers , on e hundred percen t o f al l resident s contracte d hepatiti s withi n si x months o f enterin g th e institution . . . . Man y la y o n dayroo m floors (naked ) i n thei r ow n feces " (Tren t 1994 , 258). A more recen t example, affectin g peopl e wit h a broade r rang e o f disabilities , i s reported b y Asc h an d Fin e (1988 , 23 ) fro m a New York Times article fro m 1984 . "A n inquir y int o California' s communit y car e facilities fo r th e mentall y an d physicall y disabled an d fo r th e elderl y found tha t 'daily , throughou t th e state , resident s o f communit y care facilitie s ar e bein g sexuall y abused , beaten , fe d spoile d food , forced t o liv e with toilet s tha t don' t work. ' " There ar e varying report s o n th e degre e t o which infanticid e ha s occurred i n th e pas t o r stil l does . Schee r an d Groc e (1988 ) not e that infanticid e o f disabled newborn s i s not commonl y practice d i n developing countries , despit e popula r belief s t o th e contrary . How ever, a numbe r o f example s o f disable d childre n bein g kille d a t birth o r shortl y thereafte r hav e bee n documented . Thes e practices , though, als o targe t childre n no t considere d disable d b y Wester n definitions, suc h a s babies with extr a finger s o r twins . Fo r instance , Nichols (1993 ) report s tha t amon g th e Ashanti s o f centra l Ghan a 40

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infants wit h si x fingers ar e kille d a t birt h an d wit h "th e Igb o an d some othe r group s infanticid e sometime s occurre d followin g th e birth o f twins" (32) . Mallory (1993 ) describe s ho w th e Songy e trib e o f Zair e divide s all childre n wit h physica l anomalie s int o thre e categories : ceremo nial, miserable , o r faulty . "Miserabl e childre n ar e thos e bor n wit h albinism, dwarfism , o r hydrocephaly. " The y ar e no t see n a s huma n beings; rather , the y ar e though t t o b e supernatura l being s an d ar e accorded "a n inferio r statu s i n th e tribe , an d littl e i s done t o mak e their live s comfortabl e o r meaningful " (18) . Th e Igid e o f Nigeri a are reporte d t o "tolerate " certai n "mino r birt h defects " bu t othe r "abnormal babie s ar e usuall y kille d an d throw n awa y b y th e Ebi h priest" (Nichol s 1993 , 32) . Th e practic e o f "throwin g away, " o r abandoning babie s o n rive r bank s o r i n th e bush , i s practice d b y the Igb o wit h twin s an d b y th e Ashanti s wit h "severely " retarde d infants becaus e bot h group s o f infant s ar e though t t o b e animal like. Whyt e (1995 ) report s tha t thes e practice s hav e tapere d of f i n recent time s an d tha t ther e i s increase d conflic t betwee n th e par ents, wh o ofte n wis h t o hav e th e infan t live , an d th e will o f th e elders o f th e tribe , wh o ma y wis h t o confor m t o ritua l practices . Ross (1983 ) report s tha t "infanticid e i n huntin g an d gatherin g societies was probably universall y practice d i n instance s o f congeni tal birt h defects " an d als o note s tha t ther e ar e "ethnographi c refer ences to th e ritua l disposa l o f adolescents an d adult s when the y ha d become physicall y disable d an d wer e unabl e t o b e ambulator y o r fulfill certai n tasks. " Ros s late r say s tha t thes e action s ar e take n "only whe n selectiv e pressure s wer e beyon d th e contro l o f th e particular grou p i n question " (137) . A recen t repor t i n th e Atlantic Monthly o n orphanage s i n Chin a demonstrates ho w vulnerable babie s born wit h disabilitie s ar e there. It shoul d b e note d tha t othe r infant s ar e als o vulnerabl e i n thos e institutions, particularl y girls . Anne Thursto n (1996 ) reporte d tha t for year s friend s ha d bee n tellin g he r "tha t severel y handicappe d 41 D I V I D E D SOCIET Y

infants—those wit h incapacitatin g infirmitie s requirin g full-tim e care—are routinel y allowe d t o die " (40) . Othe r infant s ar e place d in "dyin g rooms " a s well , althoug h i t appear s tha t th e practic e i s more systemati c an d probabl y mor e generall y accepte d whe n th e infants ar e disabled . A docto r wit h who m Thursto n spoke , " a ma n of great compassion, " pointe d ou t tha t th e "bes t o f his peopl e hav e suffered th e mos t egregiou s persecution . . . [therefore ] doe s i t no t follow tha t thos e o f s o littl e officia l worth—th e handicappe d an d abandoned—should b e allowe d t o die " (40) . Thi s statemen t i s Thurston's paraphrase , an d henc e i t i s no t possibl e t o tel l whethe r the wor d "official " a s a modifie r o f "worth " i s th e doctor' s view , Thurston's, o r th e government's . However , "th e bes t o f his people " is sai d straightforwardl y an d implie s it s opposite , th e worst . Com ments suc h a s thes e com e ou t i n publi c unchecke d whe n th e speaker assume s tha t ther e i s consensu s o n th e officia l wort h o f disabled people . In th e report s o f Chines e an d Africa n practices , a numbe r o f explanations ar e provide d fo r thes e practice s tha t emanat e fro m commonly hel d belie f systems . Fo r instance , th e Buddhis t belie f that " a sever e handica p [is ] . . . evidenc e o f a heinou s crim e i n a previous life" an d th e Confucia n belie f that " a severely handicappe d child woul d b e incapabl e o f fulfillin g th e immutabl e demand s o f filial piet y an d thu s unabl e t o behav e a s a prope r huma n being " (Thurston 1996 , 40 ) ar e mentioned . Nichols , i n discussin g th e derivations o f Africa n practices , make s a n importan t distinctio n between belief s tha t emerg e fro m wha t h e call s "pragmatic spirituality" and thos e attributabl e t o "blind superstition" (1993 , 29) . Hi s objective i s t o tak e a mor e seriou s loo k a t belie f system s tha t hav e often bee n dismisse d a s "primitive " o r "barbaric " an d t o demon strate th e humanitaria n an d practica l response s evidence d i n Afri can cultures . I t i s ironic, an d unfortunate , tha t a metaphoric us e o f blind i s employe d i n thi s context , particularl y because , i n contras t to pragmatic spirituality , which i s thought t o reflec t knowledg e an d 42

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utility, blin d superstitio n i s i n "bondag e t o ignorance " (29) . Al l these pragmatic and metaphysica l explanation s provid e useful mate rial fo r analysis , bu t a rigorou s examinarinn . o£ th/t Txanrinss, *hftmr selves need s t o b e made . Ritua l "disposal " o f disable d peopl e an d infanticide ar e murde r an d therefor e individua l acts , n o matte r what functio n the y ar e servin g an d n o matte r wha t comple x long standing imperative s the y fulfill . The recen t debate s abou t euthanasia , currentl y bein g calle d "physician-assisted suicide, " and abou t prenata l screening and selective abortion i n Nort h Americ a an d i n Europ e hav e raise d concern s about th e "righ t t o life " o f disable d people . Th e Suprem e Cour t i n the Unite d State s is deliberating on th e legalit y of physician-assiste d suicide, an d th e issu e i s bein g debate d throughou t th e press . Disa bled peopl e an d allies , i n demonstration s outsid e th e Cour t i n January 199 6 an d i n othe r fora , hav e bee n pointin g ou t tha t "suicide" implie s a full y voluntar y act , an d fo r man y disable d people an d poo r peopl e ther e ar e coerciv e force s tha t ac t o n thei r choices. Particularl y i n th e climat e o f manage d care , wher e th e economic imperative s tha t guid e a physician' s choice s ar e increas ingly powerful , th e suppose d "expense " o f disable d people' s live s make u s mor e vulnerabl e t o coercion . Further , physician s ar e no t reliable judge s o f th e valu e an d wort h o f disable d people' s lives . Nat He n toff (1997b ) report s tha t Dr . Katherin e Foley , cochie f o f the Pai n an d Palliativ e Car e Servic e a t th e Memoria l Sloan-Ketter ing Cance r Center , sai d i n a n intervie w tha t "physician s consis tently underestimat e th e qualit y o f living fo r thos e individual s wh o are disabled. " For a numbe r o f year s disable d peopl e hav e bee n watchin g th e Netherlands, wher e "Dutc h doctor s hav e bee n empowere d t o hel p patients kil l themselves , and , increasingly , physician s ther e hav e been directl y killin g patient s withou t bein g aske d to " (Hentof f 1997a). Hentof f aske d a televisio n interviewe r ho w th e "Dutc h people ca n justif y no t onl y thi s 'qualit y o f life ' killin g o f adults , 43

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which bring s bac k memorie s o f Nazi occupiers—bu t als o th e liqui dating o f 'defective 1 children/ ' I t i s particularl y horribl e tha t toda y the Dutc h appea r complici t i n thes e action s whe n jus t ove r fifty years ago , Dutc h physician s gav e u p thei r medica l license s rathe r then joi n th e Naz i medica l association . A study conducte d i n 199 5 revealed tha t "2 3 percen t o f th e doctor s interviewe d reporte d tha t they ha d euthanize d a patien t withou t hi s o r he r explici t request, " and i n som e case s made th e initia l suggestio n tha t "deat h shoul d b e embraced." Less egregiou s tha n murde r bu t sociall y an d personall y devasta ting is the practice of ostracizing and vilifying member s o f a society . Two recen t report s fro m Japa n provid e example s o f behavior s tha t have existe d an d continu e i n man y place s i n th e world . Th e head line o f a New York Times article b y N . D . Kristo f (1996 ) declares , "Outcast Statu s Worsen s Pai n o f Japan's Disabled. " Osam u Taka hashi, no w ag e forty-nin e an d th e directo r o f a cente r fo r disable d people i n Japan, tol d th e reporte r tha t [he] neve r went t o any school an d was hidden i n th e house fro m birth unti l th e ag e o f 26 . Whil e th e res t o f hi s famil y at e together, h e wa s serve d meal s alon e i n hi s room . Hi s famil y allowed hi m ou t o f th e hous e onl y abou t onc e a year, an d the n mostly a t nigh t s o th e neighbor s woul d no t se e . . . [and ] tha t view still survives in some households. (3 ) The ter m outcast seems t o hav e particula r salienc y fo r disable d people i n Japan. Othe r peopl e interviewe d fo r th e articl e describe d discrimination i n housing , education , an d employmen t bu t empha sized th e pai n an d frustratio n o f bein g socia l outcasts . S . Sesse r (1994) reporte d i n th e New Yorker o n th e particularl y painfu l experience tha t peopl e wh o ar e HI V positiv e hav e i n Japan. "Wit h the sic k an d th e disable d ordinaril y feelin g lik e outcasts , it' s no t

44

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surprising tha t thos e Japanes e infecte d wit h H.I.V . ar e th e mos t reclusive o f all " (64) . Disabled peopl e aroun d th e worl d wh o ar e deeme d pariah s b y their ow n familie s an d communitie s hav e lived throug h th e terribl e pain o f bein g denie d succo r b y th e ver y person s t o who m i t woul d be mos t natura l t o turn . Practice s rangin g fro m withholdin g atten tion, food, love , and educatio n t o denyin g the m lif e itself have bee n documented. Fo r th e mos t par t th e practice s describe d her e ar e no t unique t o tha t particula r culture . Man y disable d peopl e aroun d th e globe hav e storie s t o tel l o f abus e an d marginalization . A s th e res t of thi s chapte r will demonstrate , castin g ou t an d vilifyin g disable d people i s the extrem e en d o f a long an d comple x continuum . 2. ECONOMI C AN D SOCIA L LIABILIT Y

IVe change d th e Hank s an d Hank s (1948 ) origina l category , Economic Liability , t o Economi c an d Socia l Liabilit y t o permi t inclusion o f example s o f disable d people' s bein g see n a s impairin g the economi c well-being , a s wel l a s th e vitalit y an d viability , o f a society. Eve n i f disable d peopl e ar e no t considere d pariahs , thos e who ar e though t t o brin g har m directl y t o individual s o r t o th e group, ther e ar e situation s o r culture s wher e disable d peopl e ar e unwelcome becaus e the y ar e though t t o drai n resource s o r deflec t attention fro m othe r needs . Include d i n thi s categor y ar e th e mor e extreme examples , couche d i n survivalis t rhetoric , tha t invok e a lifeboat imag e o f a societ y abandonin g th e "weaker " member s t o aid th e surviva l o f th e group . Response s t o thes e imperative s rang e from containmen t an d contro l t o abandonmen t an d annihilation , all enacted ostensibl y t o conserve resource s and protec t th e interest s of the majority . Thi s sectio n doe s no t surve y practices acros s differ ent countrie s but , rather , trace s liabilit y theme s b y describin g th e emergence o f modern approache s t o disabilit y fro m th e seventeent h through twentiet h centurie s i n th e Unite d State s an d Europe .

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The modernis t "solution " t o disabilit y wa s th e institutionaliza tion o f disable d peopl e an d th e medicalizatio n o f al l response s t o disability. Thes e wer e understoo d t o b e benchmark s o f progres s i n the moder n era . Ther e ar e a t leas t tw o competin g idea s a t wor k here. On e i s th e belie f tha t i n th e modern , industrialize d worl d scientific an d technologica l competence , couple d wit h advance d humanitarian an d mora l development , woul d lea d th e wa y towar d the highes t leve l o f car e an d o f concer n eve r evidenced . However , those modernis t ideal s mea n th e societ y woul d no t tolerat e bein g bogged dow n b y thos e wh o can' t kee p up , wh o ar e though t t o drain resources , o r wh o remin d u s i n an y way o f th e limitation s o f our scientifi c capabilities . I n bot h ideas , th e issue s o f efficienc y prevail, leadin g t o action s take n t o contai n th e perceive d negativ e social an d economi c impac t o f disabilit y o n society , eve n whe n glossed with a n altruisti c facade . In th e earl y year s o f th e foundin g o f th e Unite d States , an d during a simila r tim e fram e i n Europe , ther e wer e fe w facilitie s where disable d peopl e were house d o r care d fo r i n systemati c ways. Disabled peopl e live d i n thei r communitie s an d occupie d role s ranging fro m shoemake r t o tow n foo l t o despise d outcast . Thei r roles an d degre e o f acceptanc e depende d o n a numbe r o f factors , including typ e o f community , whethe r rura l o r urban ; natur e o f the disability ; statu s o f th e family ; an d gender , race , o r personalit y of th e individual . Pau l Star r (1982 ) write s tha t "i n th e colonia l period, th e mentall y ill , alon g wit h othe r classe s o f dependents , were treate d a s a local responsibility , primaril y within thei r ow n o r other families " (72) . Early in th e history of this country, individual s who woul d toda y b e labele d mentall y retarde d wer e absorbe d int o communities wit h varyin g degree s o f acceptanc e an d support . Be fore th e adven t o f larg e institutions , ther e wer e a fe w places , suc h as convents, where group s o f disabled peopl e were housed . Wha t i s apparent i s tha t whateve r way s disable d peopl e wer e accommo dated, th e respons e wa s loca l an d informal . Fo r som e disable d 46

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people, thes e situation s wer e relativel y comfortable . However , be cause of the idiosyncratic an d arbitrar y natur e o f these accommoda tions, disable d peopl e wer e mor e likel y t o b e ostracize d tha n the y were t o b e functionin g member s o f th e community . Further , eve n if wor k an d participatio n i n religiou s activitie s wer e possible , the y may no t hav e ha d opportunitie s fo r friendship , love , an d intimacy . More systemati c response s wer e t o come , wit h varyin g outcome s for disable d people . From th e seventeenth throug h th e twentiet h centuries , a numbe r of economi c an d philosophica l factor s affecte d communit y lif e fo r disabled people . Frase r an d Gordo n (1994 ) describ e a transforma tion i n policie s fo r thos e i n nee d and , moreover , i n th e whol e ide a of "dependency." America importe d fro m Englan d th e model socia l legislation embodie d i n th e Poo r Relie f Ac t o f 160 1 an d i t "di d more tha n influenc e America n laws—fo r th e firs t 15 0 year s o f th e colonies' existence , i t was American law " (Groc e 1992 , 7) . The ac t acknowledged a responsibility t o "disable d i n need " but with a clear distinction mad e betwee n thos e wh o wer e deeme d worth y o f suc h help an d thos e wh o wer e no t (7-8) . Th e ac t ma y hav e give n some disabled peopl e more consistent financial suppor t an d relieve d families o f som e financial responsibilities , bu t i t als o functione d to mak e mor e rigi d th e dividin g line s betwee n thos e fo r who m dependency wa s "deeme d natura l an d proper " an d thos e fo r who m receiving assistance was a source o f shame . During th e seventeent h century , dependenc y o n publi c assis tance becam e mor e stigmatized . Wherea s i n th e earl y day s o f th e colonies "dependency " was considered a social relationshi p betwee n one grou p an d another , fo r instance , betwee n worker s an d land owners, increasingl y "dependency could als o designat e a n individua l character trait " (Frase r an d Gordo n 1994 , 315) . A differentiate d reading o f dependenc y alon g gende r an d rac e line s emerged : women an d th e "dar k races " wer e deeme d acceptabl e a s depen dents, bu t i t wa s considere d shamefu l fo r whit e male s t o accep t 47 D I V I D E D SOCIET Y

public assistance . Further , "dependenc y wa s deeme d antithetica l t o citizenship" (315) , whic h wa s als o relate d t o rac e an d gender , an d to disability . Th e conditio n o f dependenc y wa s considere d accept able b y th e dominan t majorit y fo r som e groups , bu t i t deprive d recipients o f th e right s o f citizenshi p an d force d peopl e t o appea r helpless i n orde r t o insur e continue d receip t o f benefits . America's glorificatio n o f independenc e ha s no t serve d disable d people well . Individua l wort h cam e t o b e increasingl y judge d i n terms o f financial an d socia l independence , a goa l very , ver y fe w disabled people , nonwhites , an d wome n coul d reach . In th e nineteent h century , ther e wa s a shif t fro m th e belie f tha t disability was caused by supernatural agency l t o a biological explanation that held that treatment, or some form o f rehabilitation, was the logical respons e t o disabilit y (Longmor e 1987) . Tha t shif t marke d the birt h o f an enormou s "care " industry and alon g with i t a variety of institutions, asylums , and stat e schools. Following the Civi l War , a mor e comprehensiv e generalize d approac h t o dealin g with peopl e in need of support developed that took the financial burden off fami lies and communities . Tren t (1994 ) reports , "[T]h e shif t fro m loca l to stat e responsibilit y fo r man y group s o f th e disable d poor—th e mad, th e blind, th e deaf, an d th e delinquent—[and] car e for feeble minded peopl e became part of a response to rapid changes in the social an d economi c fabri c o f America n life " (39) . Contributin g t o medical an d state intervention wer e the growth o f cities and the mo bility o f families . Th e populatio n densit y i n citie s resulte d i n " a higher concentratio n o f th e insan e . . . an d a greate r deman d fo r order an d security " (Star r 1982 , 72) . Trent als o trace s th e develop ment o f a medicalize d respons e to people with mental retardatio n i n the Unite d State s an d th e birt h o f orphanages , asylums , an d state operated schools . Thes e appeare d throughou t th e countr y i n th e early eighteent h century ; however , mos t woul d no t admi t childre n with physical and menta l disabilities (11) . Specialized institution s an d residentia l school s emerge d wit h 48

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varying idea s abou t th e peopl e wh o live d i n the m an d thei r needs . In th e Unite d States , ther e cam e t o b e mor e an d mor e institution s organized aroun d a particula r typ e o f disability . Withi n institu tions, a numbe r o f notion s shape d goals an d practices . Th e mos t significant fo r disable d peopl e was the increasin g influenc e o f medical personnel an d practices . Although medicin e didn' t overtl y clai m expertise i n reducin g th e economi c liabilit y pose d b y disable d peo ple, i t di d corne r th e marke t o n attempt s t o contai n th e perceive d negative socia l impac t o f disability . Thi s i s most clearl y seen i n th e growing influenc e o f medicin e o n th e respons e t o menta l illnes s and th e shift fro m th e mid-nineteent h centur y t o th e earl y twenti eth centur y fro m custodia l car e o f peopl e wit h menta l illnesse s t o belief i n th e efficac y o f preventio n an d cure . Although superinten dents o f custodia l institution s ofte n ha d medica l training , thei r work cam e t o b e see n a s policin g an d restrainin g people . Th e medical establishmen t launche d attack s o n asylums , assertin g thei r practice wa s unscientifi c becaus e the y wer e offerin g custodia l car e with n o prove n abilit y t o trea t o r cure . Adolf Meye r le d th e "menta l hygiene ,, movement , a progra m that elevate d th e rol e o f psychiatrist s i n no t onl y treatmen t bu t prevention. Th e institution s tha t emerge d i n th e twentiet h centur y became teachin g hospital s an d researc h centers . Alon g wit h thi s trend i n institutiona l care , spurred b y a new orientation t o scientifi c progress, cam e a belie f i n aftercare , whic h "looke d no t t o th e chronic, bu t t o th e curabl e patient , no t t o custod y bu t t o adjust ment, no t t o continue d dependenc e bu t t o independence " (Roth man 1980 , 313) . Th e practice s wer e reminiscen t o f th e wa y som e communities ha d responde d t o menta l illnes s befor e th e growt h o f institutions. Of course , ha d thi s pus h towar d independenc e an d productivit y for peopl e with menta l illnes s and othe r disabilitie s bee n successful , and ha d th e governmen t assure d th e typ e o f suppor t an d equalit y of opportunit y tha t woul d hav e allowe d disable d peopl e t o liv e i n 49

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the community , th e histor y o f disable d peopl e i n th e twentiet h century woul d loo k muc h differen t tha n i t does . Som e o f th e innovative medica l intervention s an d growin g expertis e migh t the n have bee n couple d wit h a commitmen t t o independen t living , active participatio n i n th e community , and , possibly , wit h concer n for right s an d equality . Instead , institutionalizatio n an d medica l control becam e th e nor m fo r man y disable d people . The ide a tha t disable d peopl e are , i n a n absolut e sense , a n economic an d socia l liabilit y i s rarel y challenged . Th e belie f tha t disabled peopl e imped e progres s o r increas e th e vulnerabilit y o f a society, particularl y whe n i t i s unde r siege , ha s neve r bee n tested , and certainl y ha s neve r bee n teste d i n a societ y tha t work s t o maximize th e productivit y an d participatio n o f disable d people . The financial stabilit y o f society doe s no t see m t o b e th e facto r tha t determines greate r degree s o f acceptance an d participation . Indeed , Hanks an d Hank s (1948 ) conclud e thei r discussio n o f this categor y by commentin g tha t economi c consideration s alon e don' t deter mine respons e t o disability . The y remin d u s tha t althoug h som e o f the group s the y discus s resor t t o infanticid e o r othe r mean s o f eliminating disable d peopl e whe n ther e ar e scan t resources , "th e Paiute o f th e Grea t Basi n o f Nort h America , wh o ha d a n almos t equally precariou s margi n o f existence, neithe r practice d infanticid e nor abandone d thei r disabled . . . . " An d th e Australians , wh o "had a sli m margi n o f surplus " di d practic e infanticid e bu t "see m not t o hav e disposed o f the physicall y handicapped " (16) . In th e curren t climat e i n th e Unite d State s o f manage d healt h care, ther e i s a dee p fea r amon g disable d peopl e tha t ou r live s wil l be weighe d o n a n economi c scale . I n Michae l Berube' s (1996 ) book abou t hi s family' s experienc e o f havin g a chil d bor n wit h Down syndrome , h e speaks poignantl y o f that fear : Among th e man y thing s I fea r comin g t o pas s i n my children' s lifetime, I fear this above all: that children lik e James will eventu50 D I V I D E D SOCIET Y

ally b e see n a s "luxuries " employer s an d insuranc e companie s cannot afford , o r a s "luxuries " th e natio n o r th e plane t canno t afford. I d o no t wan t t o se e a worl d i n whic h huma n lif e i s judged b y th e kin d o f cost-benefit analysi s tha t weed s ou t thos e least likel y t o attai n self-sufficienc y an d t o provid e adequat e "returns" on social investments. (52 ) 3. TOLERAN T UTILIZATIO N

One ca n infe r fro m th e example s provide d unde r th e Hankses ' (1948) categor y Toleran t Utilizatio n tha t the y recognize d situa tions i n whic h disable d people , althoug h ofte n margina l figures in th e society, are allowed to participat e t o th e extent tha t the y have the abilit y t o fulfil l certai n role s an d dutie s designate d b y th e nondisabled majorit y a s necessary . Disable d people' s action s there fore ar e a t th e wil l an d biddin g o f th e nondisable d majority . Fo r instance, durin g Worl d Wa r I I disable d peopl e worke d i n recor d numbers becaus e s o man y "able-bodied " peopl e wer e a t war . Dur ing this time women (bot h disable d an d nondisabled ) wer e also employed i n position s neve r befor e ope n t o them . A t th e clos e o f th e war, thes e group s returne d t o thei r previousl y lo w levels of employ ment an d t o th e restricte d rang e o f position s the y wer e allowe d t o occupy. Another exampl e o f disable d peopl e bein g utilize d a s neede d b y the societ y ar e situation s i n whic h the y ar e considere d mor e usefu l or practica l i n certai n role s tha n nondisable d people . Fo r instance , the utilizatio n o f hearing-impaire d an d dea f worker s o n assembl y lines wher e nois y machiner y i s use d o r o f peopl e o f shor t statur e in tigh t space s wher e large r worker s canno t fit. Althoug h gainfu l employment i s alway s desirabl e i n a drasticall y underemploye d group an d ther e i s a certai n peculia r logi c t o thes e solutions , give n the economic vulnerability and lo w social status of men an d wome n with disabilities , thes e situation s ar e rip e fo r exploitation . Further , the particular healt h an d safet y issue s for thes e workers an d th e lac k 51 D I V I D E D SOCIET Y

of control o r fre e will i n suc h situation s mak e the m highl y dubiou s opportunities. Disabled peopl e hav e als o serve d a t th e dominan t culture' s plea sure a s fools an d jester s i n a roya l court , an d i n suc h socia l institu tions an d ritual s a s freak show s and carnivals . People hav e been pu t on publi c displa y i n circuse s an d othe r mor e sedat e institutions , such a s museum s an d medica l facilities . (Bogda n 1988 , 1996 ; Thomson 1996) . A ma n describe d a s th e "Elephan t Man " an d a woman calle d th e "Hottento t Venus " were pu t o n vie w i n medica l and scientifi c settings , a s well as in commercia l venues . Peopl e hav e worked i n thes e area s ou t o f economi c necessit y o r becaus e the y were unde r th e "care " of medical personne l an d ha d littl e opportu nity t o pursu e othe r goals . Eithe r a s scientific specimen s o r amuse ments displaye d fo r profit , peopl e wit h disabilitie s wer e denie d basic rights and freedoms . Althoug h th e large buttocks an d genitali a of th e "Hottento t Venus " ar e no t disabilitie s b y mos t curren t lega l and typica l definitions , he r bod y an d tha t o f th e "Elephan t Man " were considere d pathologica l b y social standards . A final exampl e boldl y illuminate s th e utilitaria n an d exploitiv e nature o f some people' s idea s abou t disable d wome n an d men , an d about wome n i n general : When geneticis t Sharlen e Georg e was interviewe d fo r admissio n into a graduat e progra m a t Stanfor d Universit y i n 1967 , th e department chai r said : "Mis s George , d o yo u kno w why I' m interviewing you? It' s becaus e this year I' m reduce d t o th e lame, the halt, th e blind, an d th e women." (Tod d 1984 , 44) The nex t thre e categories , Limite d Participation , Laissez-Faire , and Participatio n an d Accommodation , ar e presente d togethe r an d then use d t o discus s th e continuu m i n educationa l practic e i n th e United State s fro m th e seventeent h centur y t o th e present .

52 D I V I D E D SOCIET Y

4. LIMITE D PARTICIPATIO N

The categor y Limite d Participatio n i s th e leas t specifi c i n th e Hankses' typology and th e examples provided ar e the mos t ambigu ous, ye t I find th e ter m usefu l t o describ e situation s i n whic h disabled people' s role s an d statu s ar e largel y derive d fro m thei r ability t o b e productiv e i n term s o f th e standard s se t b y th e domi nant majority . Thi s ide a i s based o n a n individua l mode l o f disability, th e ide a tha t i t i s u p t o th e individua l t o demonstrat e wort h and competence . I t promote s a fals e sens e o f acceptanc e becaus e the norm s an d standard s o f th e able-bodie d majorit y ar e impose d and hel d u p a s th e idea l t o whic h al l shoul d aspire . Wherea s th e previous category , Toleran t Utilization , speak s t o th e society' s con trol no t onl y o f criteri a fo r performanc e bu t o f domain s i n whic h competence ca n b e demonstrated , Limite d Participatio n indicate s the society' s willingnes s t o accep t a disable d perso n amon g it s ranks i n an y domai n i n whic h sh e o r h e ca n "kee p up " wit h th e nondisabled. 5. LAISSEZ-FAIR E

In th e Hankses ' (1948 ) descriptio n o f their last category, Laissez Faire, "a steadfast relatio n to the protective group, despite handicap," is observed and "th e obligation o f the extended famil y t o shelter an d provide for it s unfortunates continues , whether the y are able to giv e their labo r o r not " (18—19) . I'v e eliminate d th e term s "protectiv e group" and "provide for it s unfortunates," tw o ideas that do not capture the more complex relations that occur among disabled and non disabled people , and propos e instead tha t th e category include situa tions i n whic h relation s betwee n nondisable d an d disable d peopl e exist, and where th e famil y an d communit y provid e varying degree s of support fo r disable d people , whether the y are able to work or not . Although in such situations the society does not overtly exclude disabled people, it does not work toward accommodation , socia l justice, and equity with respect to them . 53

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I a m proposin g tha t th e ide a o f noninterferenc e implie d b y th e term laissez-faire applies t o th e socia l structure s an d no t t o specifi c responses t o disable d people . Indeed , i n suc h situation s ther e ma y be variou s type s o f concer n displaye d fo r disable d peopl e an d interventions provided , ye t i f the norm s o f the able-bodied majorit y are centered an d hel d u p a s the ultimat e goa l o f all people , an d th e society make s n o effor t t o reconstruc t it s goals o r acceptabl e mean s of achievin g the m t o reflec t a broade r rang e o f citizens , th e societ y has adopted a laissez-faire approac h t o disability . I n suc h situations , the dominan t grou p decide s wha t disable d peopl e nee d an d at tempts t o mee t thos e need s bu t doe s littl e t o engag e wit h disable d people a s a constituenc y t o wor k togethe r t o se t th e term s o f accommodation. Disable d peopl e the n ar e lef t i n th e unenviabl e position o f havin g t o kee p u p wit h norm s an d standard s bu t wit h no opportunit y t o shap e them . 6. PARTICIPATIO N AN D ACCOMMODATIO N

I've adde d th e las t category , Participatio n an d Accommodation , to th e Hankses ' typolog y i n orde r t o repor t o n th e moment s an d places i n whic h a proactiv e stanc e i s eviden t towar d th e equitabl e participation o f al l member s o f th e society . Thes e ar e admittedl y rare events , bu t ther e ar e som e example s o f concerte d effort s t o accommodate al l member s o f th e grou p an d t o adap t th e proce dures an d standard s typicall y impose d t o reflec t a range o f abilities, interests, an d needs . Thi s doe s no t mea n lowerin g standard s i n a n absolute sense ; i t mean s tha t greate r flexibility i s eviden t an d a broader rang e o f objective s ar e set . Thes e action s ar e base d o n moral, practical , religious , and/o r rights-base d approache s t o ful l participation o f all members o f society . Throughout th e history of the United States , education fo r disable d children ha s assume d man y forms , fro m complet e denia l o f formal ized instruction t o a few recent example s of exciting, well-informed , 54

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and inclusiv e classroom s where disable d an d nondisable d childre n learn togethe r i n cooperativ e group s designe d t o maximiz e th e participation o f all children i n th e learning process. Between thes e extremes, disable d childre n hav e experience d a variety o f learnin g environments. There ar e segregate d settings , includin g classroom s i n institu tions; specialize d residentia l an d da y schools , designe d eithe r fo r children with specifi c disabilitie s or for mixe d disability groupings; and separat e specia l educatio n classroom s withi n a general educa tion school . A variet y o f othe r type s o f placement s fo r disable d children hav e emerge d sinc e th e 197 5 passag e o f PL94-142 , "which guarantee d a n educatio n fo r th e nation' s eigh t millio n children wit h disabilitie s . . . i n th e leas t restrictiv e environment , that i s wit h nondisable d childre n wheneve r possible " (Shapir o 1993, 166) . These options include the common practic e of placing some children who are identified a s "special education" students in a general education clas s for one or two periods a day, or, for a few children, in the those classrooms for whole day, if they can keep up with th e academi c curriculum . Thi s practic e o f incorporatin g stu dents i n genera l educatio n fo r par t o r al l o f th e da y i s generall y known a s "mainstreaming, " eve n thoug h tha t i s no t a legal term . The total integration of all disabled children in general education is known a s "inclusion" an d exist s currentl y i n a number o f isolated schools and i n a few school district s aroun d th e country. I n inclu sive schools all children atten d thei r neighborhoo d school , and are placed in classes based on age rather than on test results, evaluation, diagnosis, or past performance. Although inclusio n i s a very recent project o f schools , ther e ha s no t bee n a straightforwar d historica l march fro m complet e denia l o f educatio n fo r thos e considere d outcasts or pariahs through t o totally inclusive and integrated classrooms. The educatio n syste m throughou t th e histor y o f th e Unite d States exemplifie s th e rang e o f response s demonstrate d i n th e si x 55 D I V I D E D SOCIET Y

categories presente d i n thi s chapter . Th e thre e categorie s jus t pre sented, Limite d Participation , Laissez-Faire , an d Participatio n an d Accommodation, ar e particularl y usefu l i n distinguishin g amon g the recen t approache s t o educatin g disable d children . Althoug h th e connections betwee n th e Hankses ' typolog y an d th e educationa l practices describe d her e ar e somewha t forced , I wil l describ e ho w the ideolog y underlyin g eac h o f thei r categorie s migh t lea d t o particular educationa l practices . Whe n disable d peopl e ar e consid ered pariahs , education , i f provided a t all , i s aimed a t containmen t and control . I t migh t als o hav e a tamin g function : t o civiliz e creatures see n a s no t quit e human . An y o f th e genera l goal s o f education—intellectual development , acculturation , employment , or preparatio n fo r participatio n i n th e democracy—woul d no t b e considered usefu l o r worthwhil e fo r peopl e though t t o b e a threa t to society , o r incapabl e o r unworth y o f citizenship . However , t o the exten t tha t educatio n i s though t t o decreas e th e dangerous , unwanted characteristic s o f disable d people , the n i t woul d b e con ducted i n a situatio n isolate d fro m others , wit h goal s o f socia l control an d orde r impose d rathe r tha n individua l enhancement . These agenda s wer e mor e obviou s i n institution s an d asylum s o f the past , bu t I am no t convince d tha t th e ideolog y has disappeared . At an y give n moment , whethe r i n a n institutio n o f th e eighteent h or twentiet h century , o r a general educatio n schoo l today , th e ide a that disable d peopl e ar e to b e controlle d ca n influenc e a number o f different type s o f educational initiatives . When educatio n i s guide d b y th e ide a tha t disable d peopl e ar e Economic an d Socia l Liabilities , the n instructio n wil l b e geare d toward decreasin g th e drain . Indeed , an y educationa l intervention , short o f the mos t proactive , rights-base d approac h t o th e educatio n of al l children , ca n b e see n a s respondin g t o a nee d t o reduc e th e economic an d socia l burde n disable d peopl e ar e though t t o repre sent. Rathe r tha n se e th e missio n o f educatio n o f disable d childre n in term s o f intellectua l an d socia l development , preparin g the m t o 56

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partake i n th e right s an d pleasure s o f citizenship , th e orientatio n that guide s thi s approac h i s mor e focuse d o n vocationa l trainin g and o n th e tool s an d skill s neede d t o becom e productiv e an d self sufficient. Simila r interpretation s hav e bee n mad e alon g clas s an d race lines o f the imperative s tha t driv e education . These liabilit y theme s emerg e i n debate s ove r wha t i s th e mos t cost-efficient mean s o f educatin g disable d students . Whe n mora l and pedagogicall y base d argument s fo r inclusiv e educatio n ar e pre sented, the y ar e ofte n countere d b y economi c argument s presente d at schoo l boar d meeting s o r i n legislativ e bodie s abou t th e drai n that educatin g disable d childre n i s on communit y resources . How ever, th e concern s raise d abou t allocatin g resource s t o disable d children's educatio n ar e base d o n loca l an d immediat e economi c analyses. Broader , long-ter m analyse s ar e ofte n no t par t o f thes e discussions, thereb y bypassin g recognitio n o f th e long-ter m conse quences o f denying childre n equitabl e educatio n an d th e long-ter m gains tha t coul d b e realize d fro m a n educate d an d prepare d cadr e of disable d children . I n additio n t o th e economi c liabilit y themes , concerns ar e als o raise d abou t whethe r th e presenc e o f disable d children i n a genera l educatio n classroo m deflect s attentio n fro m the need s o f th e nondisable d children . Eac h o f thes e i s a practica l problem bu t als o a n ethica l problem . M y purpos e her e i s t o un cover th e etho s tha t drive s th e decisions . The values tha t underli e th e Toleran t Utilizatio n approac h ma y subtly influenc e a school towar d preparin g disable d peopl e t o fulfil l the function s tha t th e nondisable d majorit y ar e i n nee d of . Recal l that i n thi s categor y ar e th e situation s i n whic h disable d people , though treate d a s margina l figures i n th e society , ar e incorporate d as neede d i f the y hav e th e abilit y t o fulfil l certai n role s an d dutie s designated b y th e nondisable d majorit y a s useful . Therefore , peda gogy an d curriculu m ar e no t guide d b y a concer n fo r equalit y o f opportunity but , rather , a utilitaria n visio n o f educatin g disable d people. Specia l educatio n classrooms , institutiona l settings , an d 57 D I V I D E D SOCIET Y

sheltered workshop s whos e curriculu m i s influence d b y thi s re stricted an d stereotype d visio n o f appropriat e role s o f disable d people qualif y a s examples i n thi s category . The categorie s Limite d Participatio n an d Laissez-Fair e appl y t o situations i n which standard s fo r disable d people' s performanc e ar e set b y th e dominan t majority , an d i t i s u p t o th e individua l t o demonstrate wort h an d competenc e i n term s o f thes e criteria . Thi s description coul d appl y t o school s tha t hav e mainstreamin g pro grams fo r som e disable d childre n an d separat e specia l educatio n classes fo r others . Childre n wit h physica l disabilitie s o r sensor y impairments ma y b e mainstreame d fo r a few o r al l periods a day i n general educatio n classe s i f the y ca n kee p u p wit h th e academi c level o f th e class . I n setting s suc h a s thes e yo u ofte n se e student s popped i n an d ou t o f classrooms , pu t int o a genera l educatio n reading clas s i f the y sho w skil l i n thi s are a bu t returne d t o th e special educatio n classroo m o r t o a resourc e roo m i f thei r skil l i s not considere d equivalen t t o th e genera l educatio n students . Some school s wit h mainstreamin g program s hav e create d won derful, innovativ e program s t o incorporat e som e o f th e disable d children int o thei r genera l educatio n classes . Thes e program s pro vide mor e systemati c interaction s betwee n nondisable d an d disa bled children , an d th e schoo l provide s suppor t fo r som e disable d children i n mor e integrate d classroo m environments , eve n i f th e disabled childre n ar e not abl e to engag e in o r complet e al l the sam e tasks tha t nondisable d childre n can . Disable d childre n ar e eligibl e for suc h program s i f they ca n kee p u p i n mos t academi c area s wit h the childre n identifie d a s nondisabled. I f the y ar e no t abl e t o mee t those requirements , segregate d specialize d educatio n i s provided , designed o n a priori decision s mad e about thei r academi c and socia l capabilities. Althoug h th e clas s o r th e schoo l doe s no t overtl y exclude disable d people , i t doe s no t wor k towar d ful l accommoda tion o r equit y with respec t t o disable d children . In situation s suc h a s these , th e basi c structur e o f school s an d 58 D I V I D E D SOCIET Y

classrooms remain s unchanged , bu t som e disable d childre n ar e shifted int o genera l educatio n a s long a s they can kee p u p an d thei r presence result s i n minima l alteratio n o f th e prevailin g structure . The children' s welfar e ma y b e o f grea t concer n t o th e schoo l an d the community , ye t th e visio n o f wha t ca n o r shoul d b e don e t o create a more equitabl e environmen t i s limited . My objectiv e her e i s no t t o indic t th e much-maligne d specia l education teacher s o r programs . Ther e i s probably a s broad a rang e of quality of education i n general a s in special education. Th e poin t is tha t mainstreamin g an d othe r moderat e solution s ar e toke n programs tha t cul l fro m th e specia l educatio n roster s th e childre n who ar e mos t lik e th e "mainstream. " Th e syste m place s the m i n classrooms wher e thei r presenc e i s contingen t o n thei r behavin g a s much lik e th e nondisable d childre n a s possible . I f droolin g o r having spasm s o r a speech impairmen t i s not withi n th e school' s o r the district' s criteri a fo r acceptabl e behavior s fo r mainstreame d classrooms, th e chil d wil l b e locke d ou t o f genera l education . Thi s places th e mainstreame d childre n i n th e awkwar d positio n o f hav ing t o loo k an d ac t a s nondisable d a s possibl e t o maintai n thei r position i n genera l educatio n and , a s a result , i t marginalize s eve n more the disabled childre n wh o ca n neve r pla y those parts. Further , and rarel y discussed , mainstreame d childre n los e th e opportunit y to b e with othe r disable d children . Mainstreamin g doesn' t eras e th e line between disable d an d nondisable d people ; it just draw s the lin e between acceptabl e an d no t acceptabl e a littl e t o th e lef t or , i f you're sittin g on th e opposit e side , to th e right . For th e pas t te n year s i n particular , th e practice s i n mos t schoo l districts hav e hovere d betwee n thos e whos e over t structur e resem bles th e Limite d Participatio n an d Laissez-Fair e models . Th e othe r ideas, tha t disable d peopl e ar e pariahs , socia l an d economi c bur dens, an d peopl e t o b e utilize d i n societ y i f an d whe n the y ar e needed, filters throug h educationa l discours e i n mor e cover t an d intangible ways. 59

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Recall tha t th e distinguishin g feature s o f th e las t category , Ac commodation an d Participation , ar e that a proactive stanc e is take n toward equitabl e participation, an d where procedures an d standard s are adapte d t o includ e everyone . Th e newes t mode l o f education , full inclusion , i s th e closes t t o suc h a n accommodatin g environ ment. I t differ s fro m al l th e categorie s abov e i n tha t i n it s mos t thorough an d successfu l forms , al l childre n g o t o thei r neighbor hood schoo l an d al l ar e incorporate d i n genera l educatio n classe s with appropriat e support s an d accommodations . Th e pedagogica l practices an d curriculu m ar e designe d t o reac h a broa d rang e o f children, an d integratio n an d activ e participatio n ar e goal s th e school i s committed to . Whereas th e practic e o f mainstreamin g ha s been restricte d primaril y t o childre n wit h physica l disabilitie s an d sensory impairments , th e inclusio n mode l incorporate s al l children , whatever thei r disability , i n a genera l educatio n classroom . There fore, childre n wit h menta l retardation , autism , o r menta l illnesses , those wh o ar e typicall y th e mos t sequestere d o f al l children , par ticipate i n th e learnin g an d socia l activitie s o f inclusiv e classrooms . This i s a startlin g ide a fo r man y people , particularl y i f the y hav e never see n i t i n action . I n classroo m environment s suc h a s these , the criteri a fo r demonstratin g competenc e ma y no t b e th e sam e fo r all children , bu t togethe r th e grou p tackle s th e subjec t matte r an d each chil d engage s wit h i t i n a manne r consisten t wit h he r o r hi s aptitudes an d needs . Goal s an d standard s ar e shifte d no t down ward bu t out , t o a mor e flexible an d broade r mean s o f demon strating competence . Th e burde n t o "kee p up " i s shifte d of f th e individual student , an d th e whol e classroo m environmen t shift s in it s overal l procedure s an d expectation s t o maximiz e learnin g for all . The repor t o f the National Cente r o n Educationa l Restructurin g and Inclusio n (1995 ) o n th e statu s o f inclusiv e educatio n i n th e United State s provide s qualitativ e dat a o n th e benefit s an d prob lems i n th e transformatio n o f school s t o inclusiv e sites . Multipl e 60 D I V I D E D SOCIET Y

examples underscor e th e positiv e transformation s i n th e behavio r and learnin g pattern s o f disable d student s wh o hav e bee n trans ferred fro m specia l educatio n classroom s t o inclusive ones . Student s who ha d previousl y require d a grea t dea l o f adul t interventio n t o sit still , t o b e quiet , t o focu s o n lesson s an d no t distrac t othe r students appea r t o respond t o peer pressur e t o behave, and teacher s are reporte d t o spen d muc h mor e tim e o n instructio n tha n o n "parenting" behavior s suc h a s "settin g an d enforcin g guideline s o f appropriate behavior " (226) . A n exampl e fro m Burbank , Califor nia, describe s on e way that a schoo l accommodate d childre n wh o are deaf . Th e school draw s childre n wh o are deaf fro m a wide are a and, a s a result, fro m one-thir d t o two-thirds o f the student s i n any given clas s ar e deaf . Th e regula r schoo l curriculu m i s maintaine d by usin g a team-teachin g approac h (on e general educatio n teache r and on e teache r traine d i n specia l education , bot h fluent i n sig n language). Al l student s participat e i n th e sam e classe s an d recre ational activities , wit h a hig h degre e o f socia l interactio n amon g deaf an d hearin g students . Th e distric t repor t indicate s tha t "ther e is no isolation o f the dea f students, i n the classroom o r playground . Hearing student s sig n . . . an d a t th e eighth-grad e graduatio n ceremony, th e thre e hearin g student s wh o were chose n a s speakers (the fourth wa s deaf) eac h signe d thei r speech " (39). Inclusion i s not an educational pla n t o benefit disable d children . It i s a mode l fo r educatin g al l childre n equitably . Th e concep t of heterogeneou s groupin g i s supporte d b y dat a fro m studie s o f detracking,2 whic h indicat e tha t th e benefit s o f detrackin g accru e to al l children . Th e benefit s fo r th e nondisable d childre n ar e not solely tha t the y lear n toleranc e an d acceptance . Althoug h I don' t want t o minimiz e th e importanc e o f tha t lesson , th e benefit s ar e broader tha n th e mora l lesson s suc h exposur e ca n offer . Fo r in stance, whe n nondea f childre n lear n sig n language , the y ar e no t only exposed t o a second language , rar e thes e day s in mos t elemen tary school s bu t com e t o understan d somethin g abou t languag e 61 D I V I D E D SOCIET Y

itself and ho w i t function s i n huma n experience . The presence , let' s say, o f childre n wit h menta l retardatio n i n a classroo m no t onl y helps th e childre n wh o hav e neve r ha d suc h exposur e se e th e disabled childre n a s comple x huma n beings , recogniz e thei r strengths an d weaknesses , an d lear n fro m thei r abilitie s bu t teac h all th e childre n ho w t o interac t t o solv e problem s an d abou t th e range o f ways tha t peopl e approac h a task. Th e childre n wh o lear n more slowl y ca n pic k u p cue s fro m childre n wh o hav e mastere d a particular domain , an d th e childre n wh o hav e mastere d i t ca n benefit fro m explainin g it , paraphrasing an d highlightin g importan t points, an d also , significantly , ca n benefi t fro m watchin g th e step s that th e learner s g o throug h i n masterin g th e material . A rang e o f types o f learner s i n th e classroo m provide s teacher s wit h man y "teachable moments, " th e occasion s when th e spontaneou s curricu lum tha t arise s in classroo m interaction s enriche s learning . I wan t t o resis t th e impuls e t o overromanticiz e inclusiv e educa tion. Thes e describe d benefit s don' t alway s ge t realized . Inclusio n has no t bee n a n unmitigate d succes s whereve r i t ha s bee n imple mented. Insufficien t teache r preparation , overcrowding , an d under staffing ca n interfer e wit h th e bes t o f plans . Further , thi s pla n fo r integrated environment s i n school s i s taking plac e i n a societ y tha t is fa r fro m integrated . Neithe r th e childre n no r th e teacher s an d parents hav e muc h experienc e wit h integrate d communities . Ther e have bee n instance s wher e disable d childre n hav e bee n disruptive , where nondisable d childre n hav e rejecte d disable d childre n an d they remai n isolate d i n th e classroom , an d wher e teacher s ar e overwhelmed an d underprepared , an d resen t teachin g i n thi s typ e of heterogeneously groupe d classroom . Thos e problem s ma y alway s occur, althoug h ther e ar e certainly ways t o decreas e them . Although integratio n i s a goal o f the disabilit y right s communit y in educatio n an d i n societ y a s a whole , i t doe s no t ste m fro m a valorization o f th e nondisabled , no r shoul d i t b e rea d solel y a s a reaction t o th e qualit y o f specia l education . "Normalization " i s a 62

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spurious goa l an d no t a usefu l wa y t o thin k abou t th e pus h t o inclusive education . Herber t Koh l (1994 ) make s a simila r poin t about th e misinterpretatio n o f th e Brown vs. Board of Education decision when h e notes tha t "th e specific wordin g o f the decision — 'Separate educatio n facilitie s ar e inherentl y unequal*—ha s racis t implications," an d h e the n distinguishe s betwee n involuntar y an d voluntary segregatio n (92) . He report s o n th e high qualit y o f teach ing tha t occurre d i n man y all-blac k schools . What i s wron g wit h specia l education , then , i s no t tha t th e quality o f instructio n i s necessaril y inferio r o r tha t ther e ar e onl y disabled childre n i n th e classrooms . Wha t i s problemati c i s tha t these ar e ofte n isolated , stigmatize d classes , an d tha t placemen t i n special educatio n i s no t voluntary . Segregate d specia l educatio n i s bedeviled b y th e stigm a tha t al l member s o f th e school , whethe r consciously o r not , attac h t o th e designation . Al l th e childre n i n the school , th e staff , an d parent s kno w whic h classe s ar e specia l education classes . No matte r wha t kind s o f over t lesson s ar e taugh t at th e schoo l abou t respec t fo r differenc e o r othe r suc h seemingl y committed agenda s wit h wea k impact , th e hidde n curriculum , th e stronger message , i s that childre n i n specia l educatio n ar e different , incompetent an d unsavory , and , becaus e o f thei r isolation , easil y avoidable. Expectation s tha t th e school , th e disable d an d nondis abled children , th e parents , an d th e teacher s hav e ar e inevitabl y lowered b y thes e designations . Mos t damagin g o f all , th e negativ e expectations ar e assimilate d an d internalize d b y th e disable d chil dren wit h devastatin g long-term consequences . Segregated educatio n i s no t inherentl y wors e tha n integrate d education becaus e i t i s inhabite d b y disable d children . I t i s func tionally wors e becaus e i t i s a restricte d environment , wit h classe s so smal l tha t th e benefit s o f individualize d instructio n ar e ofte n overshadowed b y the limited type s of interactions childre n ca n hav e with on e another , an d ofte n b y th e dominanc e o f adult s wh o ma y interfere wit h children' s opportunitie s t o lear n fro m an d wit h on e 63

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another. Childre n i n specia l educatio n ma y lear n a grea t deal . Indeed, ther e hav e bee n wonderfu l specia l educatio n classe s wit h dedicated an d knowledgeabl e teachers , bu t a s Jeffre y Libby , a n integration-support teache r fo r a n inclusiv e elementar y school , points out , "On e o f th e bigges t argument s agains t inclusio n . . . i s that disable d student s ca n acquir e mor e skill s withi n a n isolate d setting . . . bu t yo u teac h thing s i n isolation , an d they'r e onl y good i n isolation " (Casanav e 1991 , 41). Although integratio n i s sough t fo r th e breadt h o f educationa l opportunities offere d an d othe r advantages , dismantlin g specia l education will , unfortunately , diminis h disable d children' s oppor tunities t o gro w an d lear n aroun d othe r childre n wit h disabilities , which give s the m th e opportunit y t o shap e thi s essentia l par t o f their identit y i n th e compan y o f other s wh o shar e thei r experience . Children wit h disabilitie s ar e hungr y fo r rol e models , an d othe r children ma y b e th e onl y disable d peopl e i n a child's life . Exposur e to othe r disable d children' s adaptiveness , understandin g o f thei r social position , sens e o f self , abilit y t o negotiat e i n th e world , an d basic informatio n mak e thes e friendship s critica l i n development . In a n inclusiv e settin g ther e ma y b e onl y on e o r tw o childre n wit h disabilities i n a classroom . School district s tha t suppor t inclusio n ar e amon g th e mos t con sciously rendere d participator y an d accommodatin g environment s known, ye t ther e have been othe r moment s an d place s i n th e worl d where integratio n ha s bee n spotted . Fo r th e mos t par t thes e hav e been mor e spontaneous , chanc e event s rathe r tha n purposefull y constructed environments , an d th e accommodation s ar e usuall y not fo r al l disable d people , jus t group s wh o achiev e certai n signifi cance i n th e culture . I t i s critica l tha t thes e b e noted . The y spea k to th e huma n capacit y t o construc t disabilit y ver y differentl y tha n it usuall y is. One o f th e mos t thoroughl y investigate d environment s i s de scribed i n a landmark stud y conducte d b y Nora Groc e (1985 ) an d 64

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reported i n he r boo k Everyone Here Spoke Sign Language. I t i s a n ethnohistory o f Martha' s Vineyard , where , fo r mor e tha n tw o cen turies endin g i n th e 1950s , a hig h incidenc e o f hereditar y deafnes s existed. Rathe r tha n focu s o n th e conditio n itself , Groc e focuse s o n the accommodation s tha t som e communitie s o n th e islan d mad e t o this subgrou p o f thei r population . Th e dea f an d hearin g resident s lived an d worke d togethe r a s equals , and , a s th e book' s titl e sug gests, mos t peopl e o n th e Vineyar d wer e fluent i n a signe d lan guage tha t evolve d there . I t shoul d b e note d tha t althoug h th e proportion o f dea f resident s wa s large r tha n usual , i n th e cours e o f the thre e centurie s i n whic h thi s hereditar y phenomeno n occurre d only abou t 7 2 peopl e wit h hereditar y deafnes s live d o n th e island , one i n ever y 15 5 people ; th e typica l rati o i n th e Unite d State s i n the nineteent h centur y wa s on e i n ever y 5,72 8 people . Therefore , the dea f o n th e islan d wer e significantl y mor e proportionately , bu t the us e o f sig n languag e b y th e whol e communit y wa s i n respons e to a rather smal l absolut e number . In interview s wit h member s o f th e communit y wh o coul d re member th e tim e whe n th e dea f resident s wer e stil l around , wha t comes acros s mos t vividl y i s the matter-of-fac t wa y tha t the y spok e of thei r dea f neighbors , an d o f thei r ow n accommodatio n t o thei r presence. Groc e (1985 ) note s tha t "th e community' s attitud e ca n be judged als o fro m th e fac t tha t unti l I aske d a direct questio n o n the subject, mos t o f my informant s neve r eve n considere d anythin g unusual abou t th e manne r i n whic h thei r dea f townsme n wer e integrated int o th e society " (51) . Bu t a reporte r fo r th e Boston Sunday Herald kne w ther e was somethin g unusua l occurrin g there . Groce quote s a n 189 5 story : The kindl y an d well-informe d peopl e who m I saw , strang e t o say, seem t o b e proud o f the affliction—to regar d i t as a kind o f plume in the hat of the stock. Elsewhere the afflicted ar e screened as much a s possible from publi c notoriety. Bu t these people gave 65 D I V I D E D SOCIET Y

me a great lo t o f photographs , extendin g bac k fou r generations . These pictures o f peopl e wh o hav e neve r spoke n a wor d fro m the da y o f thei r birth , creat e th e impressio n o f th e invasio n b y deafness o f what migh t otherwis e hav e bee n a wonderfully per fect type . The reporte r presage d th e dea f prid e movemen t b y almos t on e hundred year s an d displaye d som e understandin g o f th e socia l construction o f disability. However , th e ableis t notio n tha t th e dea f people woul d b e perfec t i f no t fo r thei r impairment s an d a late r comment tha t "th e mute s ar e no t uncomfortabl e i n thei r depriva tion" (52-53 ) revea l the limitation s o f the reporter' s insight . How woul d a reporte r toda y approac h a stor y o n a simila r but mor e circumscribe d environment , fo r instance , th e Burbank , California, school , discusse d earlier , wher e hearin g an d nonhearin g students lear n an d pla y togethe r an d wher e bot h group s ar e fluent in sig n language ? Woul d sh e o r h e fram e th e subject s a s les s tha n perfect, albei t valian t an d plucky , an d th e hearin g kid s a s generou s and good-spirited ? Pain t th e relationship s betwee n th e tw o group s in sentimentalize d colors ? Glorif y th e accomplishment s o f th e dea f children? O r migh t a reporte r toda y hav e th e sophisticatio n an d insight abou t disabilit y issue s t o focu s o n ho w a n accommodatin g environment structure s equalit y and motivate s bot h group s t o wor k together utilizin g a rang e o f communication s medi a tha t allow s full participatio n o f everyone ? Eve n i f a reporte r di d hav e tha t sophistication an d insight , sh e o r h e woul d hav e t o conten d wit h the overwhelmin g tendenc y o f mos t new s storie s toda y t o g o fo r the upliftin g huma n interes t stor y rathe r tha n a n analysi s o f th e structural element s tha t determin e interpersona l relationships . Thi s is tru e o f th e medi a i n general , bu t i n th e cas e o f disability , th e likelihood i s magnified a thousand times . Representations o f disabilit y an d th e representation s o f disable d people's plac e in societ y are largely i n th e hand s o f people schoole d 66

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in a particular vision o f disability, one that i s saturated with deter ministic thinkin g an d characterize d b y maudlin an d morbi d senti ments projecte d ont o disable d people' s experience . Th e insistenc e not jus t tha t disabilit y i s an unfortunat e occurrenc e bu t tha t disa bled people are, perforce, "unfortunates " seeps into most reports on the disabilit y experience . Insiders ' report s o f disability , a s see n i n some o f th e bes t o f th e disabilit y studie s scholarshi p an d i n suc h publications as the Disability RagznA the Mouth, present a differen t perspective. The Martha' s Vineyar d stud y als o stand s i n contras t t o typica l records of disabled people in society because it documents a Participatory an d Accommodatin g environment , focuse s o n socia l deter minants, and i s comprehensive. The deart h of such report s raise s a number o f question s tha t I addres s below . Hav e ther e bee n n o other suc h environments ? Doe s th e absenc e i n histor y o f simila r environments indicat e th e impossibilit y o f suc h integratio n an d equity? Ar e researcher s no t intereste d i n suc h socia l patterns ? D o researchers lac k th e theoretica l tool s wit h whic h t o evaluat e suc h behaviors and practices? I believ e ther e hav e bee n an d ar e place s an d moment s wher e more equitable and integrated environments are seen. They are not ideal; indeed , Martha' s Vineyar d i s fa r fro m idea l becaus e th e accommodation mad e to deaf people did not extend t o all disabled people. Thes e ar e place s where th e nondisable d cente r an d domi nance shift s an d greate r degree s o f accommodatio n ar e evident . John Hockenberr y (1995 ) describes the neighborhood aroun d Israel's most famou s acut e traum a facility , a t Tel Hashome r Hospital , where most people who were wounded in the wars or in automobile accidents go for rehabilitation . I t seem s the disabled me n (i t is not clear where disabled women go ) sta y on i n th e neighborhood afte r they leav e th e hospital , an d Hockenberry , a reporter fo r Nationa l Public Radi o an d a wheelchai r user , note d a concentratio n o f houses with "newly built wide doors, ramped entrances, and freshl y 67

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paved driveways, " quit e differen t fro m mos t Israel i neighborhoods . The area , though , wa s "somethin g o f a cri p ghetto , th e onl y plac e in Israe l wher e I woul d regularl y se e peopl e i n wheelchair s o n th e street" (236) . Anyone wh o ha s eve r visited a well-run independen t livin g cen ter 3 woul d witnes s a n environmen t consciousl y rendere d t o accom modate al l people . I n additio n t o th e office s themselves , i n th e immediate neighborhoo d o f thes e centers , yo u ar e mor e likel y t o see ramp s t o get int o stores , accessibl e bathroom s i n loca l restau rants, an d possibl y menu s i n Braille . I n som e instances , th e inde pendent livin g cente r ha s had a strong impac t o n loca l policy . Berkeley, Californi a wa s th e sit e o f th e first independen t livin g center i n th e countr y (incorporate d i n 1972) , an d i s notable fo r it s history o f stron g activis m an d hig h degre e o f loca l impact . Anyon e with a n interes t i n suc h phenomen a woul d notic e th e cur b cut s o n every corne r an d th e ramp s int o buildings . Whe n I first visite d Berkeley i n 1975 , wha t wa s eve n mor e strikin g t o m e wa s th e degree t o whic h disabilit y ha d becom e suc h a commo n featur e o f the landscap e tha t I coul d mov e abou t casuall y withou t causin g a stir. People , i t appeare d t o me , di d no t star e no r di d the y glanc e and quickl y aver t thei r eyes . Peopl e were , i n general , neithe r rud e nor overl y solicitous . Th e shift s tha t ha d occurre d i n th e physica l and communication s environments , an d th e stron g presenc e o f a n active disabilit y communit y hav e thes e kind s o f effect s o n th e interpersonal environment . Granted, ther e are very few places like independent livin g centers and thei r environ s where disable d peopl e have much autonom y an d freedom o f movement . Onl y a fe w othe r example s com e t o mind . One i s som e o f th e newl y designe d area s i n th e Nationa l Park s System, wher e disable d peopl e an d nondisable d peopl e hav e worked togethe r t o mak e th e environment s accessible . Another i s a small, rustic resort I visited i n Byro n Bay , Australia, ru n b y disable d people i n a plac e wher e pleasur e an d goo d time s ar e th e orde r o f 68 D I V I D E D SOCIET Y

the day . Othe r place s includ e meeting s o f disabilit y right s group s or disabilit y studie s conferences . These place s ar e remarkabl e fo r disable d people . The y diffe r from mos t o f the place s encountered, i n which inequities , discrimi nation, an d marginalizatio n ar e mor e likel y t o occur . Thes e place s are s o radicall y differen t fro m typica l experienc e an d ye t s o clearl y possible tha t the y remin d u s o f th e absenc e o f will t o creat e suc h environments everywhere . Thinkin g abou t thi s situatio n bring s t o mind a study reporte d i n th e New York Times Science section a fe w years ago . Th e articl e (Wilford , 1994 ) reviewe d th e result s o f a two-year investigatio n b y a n anthropologis t o f th e sparsel y popu lated islan d o f Vanatina i nea r Papu a Ne w Guinea . It s front-pag e headline rea d "Sexe s Equal o n Sout h Se a Isle." Dr. Mari a Lepowsk y reported tha t a uniqu e socia l arrangemen t exists : me n an d wome n live an d wor k a s virtua l equals . "I t i s no t a plac e wher e me n an d women liv e i n perfec t harmon y an d wher e th e privilege s an d bur dens o f bot h sexe s ar e exactl y equal , bu t i t come s close " (CI) . She sai d tha t th e findings challeng e som e theorists ' positio n tha t male dominanc e i s universa l o r someho w inheren t i n huma n cul tures. The valu e an d meanin g o f Lepowsky' s discover y was , I think , apparent t o mos t Times readers . Vanatina i differ s fro m othe r known culture s aroun d th e worl d i n it s apparentl y hig h degre e o f gender equity . Woul d th e reader s hav e a similarl y sophisticate d understanding of , let' s say , th e meanin g an d significanc e o f th e anthropological dat a collecte d o n Martha' s Vineyard ? Ar e the y ready t o conside r tha t th e socia l positio n o f disable d peopl e i n th e United State s an d i n mos t othe r know n culture s i s no t inevitabl e and immutable . I t too k th e tools of women's studie s t o uncove r th e key ingredients o f the Vanatinai culture . Similarly , disabilit y studie s is neede d t o investigat e equitabl e arrangement s an d appl y tha t knowledge t o th e constructio n o f equitabl e societies . Unti l disabil ity studie s articulate d th e socia l an d politica l paradigms , ther e wa s 69

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little i n th e wa y o f a theoretica l framewor k fro m whic h suc h research coul d proceed . The titl e of this chapter, "Divide d Society, " speaks to the fissures between disable d an d nondisable d peopl e eviden t acros s tim e an d across cultures. I contend thes e divides ar e not inevitable ; indeed , i f we mobiliz e sufficien t intellectua l wherewithal , I believ e w e ca n unearth othe r positiv e arrangement s or , a t least , envisio n wha t the y might loo k like . I n th e nex t chapte r I tur n t o th e academ y t o investigate it s rol e i n marginalizin g th e knowledg e an d th e peopl e needed t o repositio n disable d peopl e i n th e socia l an d politica l arena. NOTES

1. Se e also Eiesland' s (1994 ) The Disabled God: Toward a Liberatory Theology of Disability fo r a n overvie w o f religiou s explanation s o f disability. 2. Fo r discussion s o f trackin g an d detracking , se e McLare n (1994) ; Oakes (1985); and Polakow (1993). 3. Independen t living centers are organizations run by and for disabled people, operatin g o n th e premis e that , a s Joseph Shapir o (1993 ) writes i n No Pity, no on e "kne w mor e abou t th e need s of disabled people tha n disable d peopl e themselves " (73) . The center s provid e services tha t allo w peopl e wit h disabilitie s t o achiev e maximu m independence i n th e communit y an d a t th e sam e tim e serv e a s advocates to change the community to make it more accessible and equitable for disabled people.

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4 DIVIDED CURRICULU M

T

he gate s o f th e institution s an d sheltere d dwelling s tha t hav e housed disable d peopl e ove r th e centurie s hav e bee n opened . The critica l gaz e o f ou r newl y minte d citizens , unaccounte d fo r al l these years , i s no w traine d o n th e dominan t narratives . Throug h their eyes, we see the replicatio n an d justificatio n o f social practice s in ou r intellectua l traditions . Thi s chapte r provide s a disabilit y reading o f thos e traditions , a s well a s a discussio n o f th e obstacle s to meaningfu l inquiry . Butler an d Walter s (1991 ) not e tha t decision s abou t curriculu m transformation ar e based , i n part , o n th e answe r t o th e questio n "Are thes e ignored , distorted , subordinate d peopl e an d thei r histor -

ies an d legacies , an d experience s importan t t o understandin g an d expressing ou r America n selves? " (326) . T o get th e academ y t o engage tha t questio n wit h respec t t o disability , disabilit y right s activists an d disabilit y studie s scholar s hav e first ha d t o assum e th e responsibility o f provin g tha t disable d peopl e occup y a subordinat e position i n critica l socia l an d economi c domains , tha t disable d people ar e a significan t constituency , an d tha t ou r historie s an d legacies hav e bee n distorted . Further , disabilit y studie s ha s demon strated ho w th e statu s an d assigne d role s o f disable d peopl e ar e no t inevitable outcome s o f impairment s bu t th e product s o f socia l and politica l processes . No w i t i s incumben t o n peopl e acros s th e disciplines t o stud y th e consequence s o f oppressin g peopl e wit h disabilities and , significantly , t o stud y th e consequence s o f con structing a knowledg e bas e withi n whic h tha t socia l positionin g i s deemed rationa l an d morall y sound . In directin g attentio n no w t o th e rol e o f th e academ y i n th e social response t o disability , I will focus o n thre e domains. The first is th e natur e o f inquir y int o disability ; th e second , th e structur e of th e curriculu m i n highe r educatio n an d it s rol e i n organizin g information s o a s t o represen t certai n version s o f th e world ; an d the third , th e conten t o f th e curriculum . 1. INQUIR Y

Research, whether aime d a t disability as subject matte r an d disable d people a s subjects o r erroneousl y ignorin g disability , play s a rol e i n constructing disability . A numbe r o f questions aris e when thinkin g about ho w th e metho d an d focu s o f th e proces s o f acquirin g ne w knowledge shap e understandin g o f disability . Fo r instance , ho w does th e structur e an d focu s o f researc h contribut e t o ableis t no tions o f disability? What perspective s infor m th e choice of variables, theories t o b e tested , interpretativ e framework s t o b e employed , and subjects/object s t o b e studied ? Ho w ha s th e researc h agend a

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been influence d b y th e absenc e o f disable d peopl e i n academi c positions? I will star t wit h th e las t question . Disable d peopl e ar e rarel y i n the researcher' s positio n becaus e o f a hos t o f factors , includin g limited educationa l opportunities , discriminatio n i n hirin g an d promotion, an d inadequat e suppor t fo r disabilit y studie s scholar ship. Further , whe n disable d peopl e hav e attaine d academi c posi tions, th e type s o f accommodation s tha t woul d facilitat e activ e research productio n ar e ofte n no t provided . Fo r instance , materia l available i n Braill e o r o n tape , sig n languag e interpreters , readers , work station s i n th e librar y o r i n lab s tha t peopl e wh o us e wheel chairs ca n access , o r othe r low - o r high-tec h equipment , suc h a s voice-activated computers . A s a resul t o f discriminatio n i n hirin g and i n providin g acces s t o th e material s an d facilitie s neede d t o engage i n research , on e seldo m finds i n on e perso n th e expertis e o f the traine d researche r combine d wit h th e expertis e o f th e disable d subject. Typically, disable d peopl e ar e studie d onl y i n thei r particularity , which i s no t considere d generalizabl e o r relevan t t o nondisable d people, o r the y ar e studie d a s deviatio n fro m th e nor m i n orde r t o increase th e knowledg e abou t an d statur e o f th e norm . I n socia l science and scienc e research, where the vast majority o f research ha s been conducted , ther e i s th e bod y o f researc h tha t focuse s o n disability to lear n abou t tha t experience , and the n researc h designe d to lear n abou t standar d functionin g b y measurin g deficit s an d anomalies i n disable d people . Othe r researc h render s disable d peo ple invisibl e an d irrelevan t a s a n objec t o f inquiry . Fo r instance , research tha t purport s t o represen t a particula r populatio n i s likel y to cul l it s sampl e fro m nondisable d people , ye t th e descriptio n o f the limitation s o f generalizabilit y o f th e dat a rarel y acknowledge s this omission . Tavris (1992 ) i n The Mismeasure of Woman describe s a simila r

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phenomenon wit h respec t t o gender . A revie w o f medica l journal s found tha t title s o f article s tha t implie d a general population , suc h as "Norma l Huma n Aging, " wer e frequentl y use d fo r studie s wit h only mal e subjects . I n contrast , th e title s o f article s reportin g re search exclusivel y on women , state d tha t fac t explicitly . Stephe n Jay Gould (1981 ) acknowledge s thi s tendenc y wit h respec t t o bot h gender an d race , and explain s tha t th e titl e o f his book, Mismeasure of Man, i s intende d t o commen t o n th e tendenc y o f scientist s t o "study 'man * (tha t is , white Europea n males) , regardin g thi s grou p as a standar d an d everybod y els e a s somethin g t o b e measure d unfavorably agains t it " (16) . In additio n t o th e marginalizatio n o f disable d peopl e a s object s of inquir y an d th e failur e t o se e connection s amon g disable d an d nondisabled people' s experience , th e relationshi p betwee n disabilit y and it s "owner" ha s no t bee n adequatel y studied . Thi s i s a relation ship tha t coul d b e studie d throughou t th e curriculum , usin g th e lenses o f literar y criticism , philosophy , history , poetry , anthropol ogy, women' s studies , an d numerou s othe r perspectives . Th e ma jority o f researc h ha s occurre d i n th e science s an d socia l sciences , particularly psychology , bu t tha t researc h ha s no t yielde d ver y rich , contextualized knowledge . I t i s no t clea r t o me , though , whethe r the qualit y o f th e dat a i s a resul t o f prevailin g researc h method s o r whether th e choic e o f methodolog y i s determine d b y prevailin g ideas abou t disability . Fo r instance , hav e empiricism' s reductiv e tendencies force d u s to examine impairment s an d functiona l limita tions ove r th e mor e comple x an d nuance d experienc e tha t disable d people describ e a s th e textur e o f thei r lives ? O r hav e idea s abou t disability, suc h a s deterministi c beliefs , th e medicalizatio n o f dis ability, o r th e objectificatio n o f disable d people , le d researcher s t o employ quantitativ e rathe r tha n qualitative , historical , o r interpre tive methods ? Both quantitativ e an d qualitativ e method s hav e bee n use d pre dominantly t o stud y individua l patterns , no t socia l situation s o r 74 D I V I D E D CURRICULU M

cultural representation s tha t influenc e thos e patterns. Even if these methods wer e employe d t o focu s o n th e powerful—thos e wh o exercise control over disabled people—and were employed b y disabled peopl e to do so, they would no t adequatel y assess th e process of ableism. Olive r (1992) , and Ward an d Flyn n (1994 ) cal l for a n emancipatory paradig m that , a s Oliver says , "stems from th e gradual rejection of the positivist view of social research as the pursuit of absolute knowledge throug h th e scientific metho d an d th e gradual disillusionment wit h th e interpretiv e vie w o f suc h researc h a s th e generation o f socially useful knowledg e within particula r historica l and socia l contexts. " H e propose s tha t th e emancipator y mode l involve "recognition o f and confrontation wit h power which structures the social relations of research production" (110). Although i t seem s tha t recen t interes t i n qualitativ e method s could improv e th e stud y o f disability , severa l scholar s hav e chal lenged thi s assumption . Olive r (1992 ) fault s bot h positivis m an d interpretive paradigm s fo r thei r contributio n t o th e alienatio n o f the researcher from th e researched, whereas Rioux and Bach (1994) point t o th e mor e genera l "positivis t theor y o f knowledge " a s th e root caus e o f th e reificatio n o f disabilit y (viii) . War d an d Flyn n (1994) describ e how bot h traditiona l positivis t researc h paradigm s and interpretive o r qualitative paradigms can be used by "relatively powerful experts on relativel y powerless 'subjects. ' " They g o on t o say that "despit e th e libera l trapping s o f th e qualitativ e paradigm , the 'social relations of research production' ha d not changed" (30 31). I n othe r words , thes e newe r method s hav e no t succeede d i n placing disabled peopl e i n a more centra l rol e i n researc h produc tion, no r i n explicatin g th e powe r difference s betwee n predomi nantly nondisabled researcher s and their disabled "subjects. " Gould (1981 ) raise s simila r question s abou t methodolog y i n relation t o racism . H e asks , "[Did ] th e introductio n o f inductiv e science ad d legitimat e dat a t o chang e o r strengthe n a nascen t argument fo r racia l ranking? O r di d a priori commitmen t t o rank 75

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ing fashio n th e 'scientifi c question s aske d an d eve n th e dat a gath ered t o suppor t a foreordaine d conclusion? " (31) . Th e question s have a s muc h t o d o wit h disabilit y a s the y d o wit h racism . Th e process o f rankin g an d th e spuriou s construct s withi n whic h th e ranked ar e groupe d nee d t o b e examine d no t onl y i n term s o f th e disproportionate number s o f African American s wh o hav e receive d a lo w ran k bu t i n term s o f the fabricatio n o f such a system an d th e legitimization o f ranking . I a m reminde d o f thi s fault y logi c whe n I rea d expose s o f th e disproportionate representatio n o f black male s i n specia l education . I vie w tha t overrepresentatio n a s a mora l failure , an d a s a destruc tive an d aggressiv e act . Ye t I a m simultaneousl y disturbe d tha t th e placement o f an y chil d i n isolate d an d restrictiv e educationa l set tings i s no t als o challenged . Th e pathologica l designation s an d labels affixe d t o disable d girl s an d boy s carr y tremendou s weigh t and determin e a vast rang e o f experience . Th e medicalize d classifi cation syste m and th e use of diagnostic categories legitimize rankin g in th e educatio n system , an d ther e ha s bee n inadequat e attentio n to th e socia l determinant s o f thes e categories . Th e histor y o f thei r construction an d us e demonstrates ho w the knowledge o f the medi cal profession ha s bee n privilege d an d i s used t o maintai n th e socia l position o f the diagnosed . 2. STRUCTUR E O F CURRICULUM

The dominan t question s relate d t o th e structur e o f th e curriculu m are, Ho w ar e domain s o f knowledg e divide d u p o r clustere d s o a s to rende r a partial o r distorte d pictur e o f disability ? Ho w doe s thi s configuration lea d t o particula r socia l practices ? The disciplinar y an d divisiona l structur e ca n b e though t o f a s a medium b y which conten t i s delivered. Although no t a technologi cal devic e pe r se , i t shape s an d mold s th e containe d ideas , forcin g certain connection s while obscuring others . Disability studies schol arship call s int o questio n th e utilit y an d validit y o f th e presen t 76

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configuration, an d th e consequence s o f thes e division s o n th e con tent o f the curriculum . THE DIVID E BETWEE N TH E LIBERA L ART S AN D TH E APPLIED FIELD S

A majo r dividin g lin e tha t stretche s th e entir e lengt h o f th e curriculum i s tha t betwee n th e applie d fields an d th e libera l arts . Although ther e i s variatio n acros s th e countr y i n wher e differen t fields are maintained, a department's o r division's identit y i s shaped by whether i t i s predominantl y devote d t o teachin g th e libera l art s or preparin g student s fo r th e helpin g professions . Course s i n eac h domain, eve n i f the y ar e similar , rarel y travers e th e divide , no r d o faculty. Fo r instance , a cours e i n chil d developmen t i n a teache r education progra m i s ofte n no t interchangeabl e wit h th e same titled cours e i n th e psycholog y department , eve n thoug h bot h might b e taugh t b y facult y traine d i n th e sam e area . Anothe r example i s that American Sig n Languag e (ASL ) i s more likel y to b e taught i n th e applied program s a s a tool t o communicate wit h Dea f clients o r student s tha n taugh t a s a languag e an d cultura l heritag e in a liberal art s framework. Althoug h ther e hav e been som e change s in recen t years , student s ar e rarel y allowe d t o us e AS L t o fulfil l language requirement s o n th e graduat e o r undergraduat e level , n o matter thei r leve l of proficiency . The libera l art s an d applie d fields achiev e differen t statu s i n th e academy, derive d i n n o smal l measur e fro m idea s abou t th e sup posed theory-drive n natur e o f libera l art s an d th e mor e pragmati c imperatives o f th e applie d fields. Th e theory-base d domain s ar e thought t o deman d a greate r degre e o f abstrac t reasoning ; th e applied fields ar e believe d t o requir e th e mor e concret e thinkin g skills o f a practitioner . I n reviewin g th e histor y o f th e dichotomy , Minnich (1990 ) note s tha t "th e libera l art s wer e fo r thos e wh o could indulg e i n stud y o f th e 'higher ' things ; th e servil e arts , fo r those whos e knowledg e woul d b e pu t t o som e direc t use . Th e ol d 77 DIVIDED CURRICULU M

privileged-male Athenia n notio n remained—th e ide a tha t whic h i s of no us e (tha t is , is an en d i n itself ) i s higher tha n anythin g tha t i s involved intimatel y wit h th e maintenanc e o f life " (45) . All focuse d study o f disability occur s i n thos e applie d fields which ar e designe d to prepar e practitioner s t o work i n educatio n o r healt h car e institu tions with disable d people . Knowledge generate d withi n th e libera l art s is , o f course , ofte n applied t o socia l problems . "Man y o f th e socia l science s develope d out o f th e need s o f disciplinar y institutions , suc h a s prison s an d asylums, which continu e t o b e both object s o f social science inquir y and consumer s o f th e knowledg e tha t i s produced" (Shumwa y an d Messer-Davidow 1991 , 212). Bu t studyin g th e socia l environmen t and secondaril y applyin g th e knowledg e t o alte r tha t terrai n i s tantamount t o annexin g th e sit e a s a n auxiliar y laboratory . Th e research o n thos e environment s i s generate d withi n th e academ y and primaril y serve s academi c interests . Applie d research , b y con trast, i s generate d b y problem s tha t aris e outsid e th e academy . Ye t whether th e researc h i s internally o r externall y generated , th e ques tion tha t remain s is , does th e researc h serv e disabled people' s inter ests? I f neithe r domai n i s informe d b y disable d people' s perspec tives, th e "problems " tha t researc h i s designe d t o addres s ar e no t likely t o b e thos e tha t th e disable d communit y identifies . Withou t disabled people' s perspectives , suc h matter s a s increase d publi c acceptance o f "physician-assiste d suicide," 1 th e one-dimensiona l representation o f disabilit y i n film an d i n th e popula r press , pater nalistic practice s i n agencies designe d t o assis t disable d people , o r noncompliance wit h th e ADA ma y never b e addressed . In th e creatio n o f ne w fields o f study , th e mergin g acros s disci plines ha s rarel y produce d mergin g acros s th e divid e betwee n th e liberal art s an d th e applie d fields. Field s suc h a s sociobiology , o r courses tha t merg e literatur e an d history , o r psycholog y an d film, marry tw o course s fro m th e libera l arts . Ther e ar e a fe w hybri d specializations withi n th e applie d fields a s well, an d quit e recentl y 78

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there hav e been a few ne w specialization s tha t d o bridg e th e divide . Medical anthropolog y an d sociolog y of health ar e two tha t no t onl y have draw n previousl y isolate d curricul a togethe r an d generate d interdisciplinary researc h bu t hav e als o create d a professional nich e for graduate s i n hospital s an d researc h institutions . The in-hous e libera l art s merger s d o hel p scholars , an d ulti mately students , thin k abou t th e meaningfu l connection s amon g some phenomena . However , the y d o littl e directl y t o prepar e peo ple t o addres s problem s raised , fo r example , b y social influence s o n the stud y o f biology . A s a futur e politician , governmen t worker , medical technician , lawyer , o r abortio n clini c supervisor , a studen t may benefi t fro m th e knowledg e an d perspective s gaine d i n a course i n histor y o r philosoph y o f science . Bu t ther e i s n o applie d field tha t prepare s peopl e t o monito r th e way s socia l interest s are serve d b y th e distributio n o f mone y fo r scientifi c research , to investigat e th e connection s betwee n pharmaceutica l companies ' research method s an d socia l policy , o r othe r intersection s betwee n biology an d socia l issue s suc h a s th e curren t climat e o f geneti c research an d it s implication s fo r prenata l screenin g an d selectiv e abortion. "[T]h e making o f socia l chang e doe s no t exis t a s a n academic inquiry " (Messer-Davido w 1991 , 293) . Th e applie d fields, suc h a s counseling , healt h fields, socia l work , an d eve n education, ar e generall y designe d t o interven e o n th e individua l level. Many facult y i n th e applie d fields d o attemp t t o bridg e th e ga p between th e libera l art s an d applie d fields. B y training an d interest , they ar e impelle d t o loo k int o historica l precedent s o f curren t practice, t o refin e an d tes t psychologica l theory , o r t o conduc t basi c research. Th e applie d fields, suc h a s teache r education , wher e IV e happily taugh t fo r th e pas t te n years , hav e man y facult y member s who ar e determine d t o contextualiz e students ' knowledg e i n philo sophical, historical , scientific , o r literar y theories . However , w e ar e often stymie d becaus e student s expec t teache r educatio n course s t o 79

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show the m ho w t o b e effectiv e teacher s an d libera l art s course s t o supply th e knowledg e bas e the y nee d t o b e informe d people . Th e rift betwee n th e libera l art s an d th e applie d fields, an d th e labelin g of th e applie d facult y a s practitioner s ar e endemi c t o th e institu tional cultur e tha t nurture s thos e expectations . SPLITS WITHI N TH E APPLIE D FIELD S

Another rif t occur s withi n th e applie d fields, bifurcate d int o specialized fields an d genera l fields. The purpos e o f the forme r i s to prepare practitioner s t o wor k exclusivel y with peopl e wit h disabili ties. Fo r instance , rehabilitatio n psycholog y an d specia l educatio n are specialization s o f psycholog y an d o f education . Student s i n these specialization s ma y shar e fe w i f an y course s wit h major s i n the mor e generalize d domains , us e differen t textbooks , an d ar e often house d i n differen t department s o r even i n differen t divisions . A fe w universitie s hav e attempte d t o merg e specia l an d genera l education an d prepar e student s t o wor k i n inclusiv e primar y an d secondary educatio n settings . Syracus e Universit y ha s ha d suc h a program fo r a numbe r o f year s an d als o provide s field placement s for it s student teacher s i n th e inclusiv e classroom s mandate d b y th e local Syracuse , New York, schoo l district . For th e mos t par t though , th e stud y o f disabilit y i s isolate d i n the specialize d applie d fields (e.g. , specia l education , rehabilitatio n psychology, physica l therapy) , and tha t informatio n i s usually available onl y t o major s i n thos e fields. Tha t curriculu m ha s bee n developed fro m th e perspective s o f th e clinician , teacher , o r prac titioner an d perpetuall y cast s peopl e wit h disabilitie s i n th e rol e o f patient, student , o r clien t (Linton , Mello , an d O'Neil l 1995) . In teache r education , th e consequence s o f th e bifurcate d syste m are enormous . Whil e federa l mandate s ar e compellin g school s t o increase th e integratio n o f student s wit h disabilitie s i n genera l education, mos t teache r educatio n program s ar e retainin g separat e systems. Although isolate d course s i n eithe r teache r educatio n pro 80

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gram migh t discus s mainstreamin g and , o n occasion , inclusio n a s approaches, withou t activel y integratin g th e tw o set s o f teache r education students , thes e concept s appea r a s abstract notions . The onl y justificatio n fo r keepin g th e tw o program s an d thei r respective knowledg e base s separat e i s th e ide a tha t childre n wit h disabilities ar e a separate categor y o f learner. Becaus e specia l educa tion b y structure an d definitio n place s disabilit y a s the majo r defin ing variable o f learners , th e field overemphasize s disability , milkin g it fo r explanator y valu e t o justif y organizin g educatio n int o tw o separate systems . Meanwhile , genera l educatio n underemphasize s and marginalize s thi s dimension o f variation i n students . Therefore , neither grou p o f teacher s i s adequatel y prepare d t o wor k i n class rooms wher e disable d an d nondisable d childre n ca n lear n togethe r (Linton 1994 , 9) . Lilly (1989 ) predicte d tha t specia l an d genera l teache r educatio n would merg e eventually , whe n teache r preparatio n program s reflec t the nee d t o prepar e teacher s t o wor k i n mainstreame d schools . H e notes tha t barrier s t o merge r includ e fixed professiona l identities ; inertia; deepl y hel d belie f system s abou t fundamenta l difference s among childre n house d i n th e tw o systems ; an d th e eas e o f "op erating i n one' s comfor t zone " (154) . However , alon g wit h thos e obstacles, larger force s ar e working agains t dismantlin g thi s system . One i s th e structur e o f knowledg e o n disabilit y a s a whol e i n th e academic curriculum , whic h prevent s critica l examinatio n o f th e ideas an d historica l force s tha t perpetuat e a divided societ y (Linto n 1994). Wha t i s needed i s a broad-base d epistemolog y o f inclusion , a knowledg e bas e grounde d i n th e libera l art s tha t provide s th e tools tha t academic s an d civilian s nee d t o mak e critica l social , intellectual, an d professiona l changes . Although I a m critiquin g th e existin g structur e an d th e domi nant paradigm s employe d i n th e applie d fields, i t i s importan t t o recognize tha t disable d people' s qualit y o f lif e ha s bee n improve d by medical , psychological , an d educationa l intervention . Ther e i s 81

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reason t o credi t man y i n th e applie d fields fo r intervention s tha t enhance th e well-bein g o f disable d people . Som e migh t eve n argu e that th e disabilit y specialization s hav e provided th e spac e and focu s that allowe d thos e intervention s t o occur . Bu t tha t argumen t doe s not accoun t fo r th e downsid e o f segregate d trainin g an d services , which i s the furthe r sequesterin g o f disabled peopl e and th e overde termination o f disabilit y i n thos e settings . Disabilit y become s th e ring throug h th e nos e o f practitioners tha t lead s the m t o particula r interpretations an d intervention s base d o n th e ide a tha t disabilit y in genera l an d specifi c disabilitie s i n particula r determin e a constellation o f psychologica l response s o r tha t disable d peopl e hav e suc h unique need s tha t the y ca n b e me t onl y b y specialists . Thi s setu p restricts th e abilit y o f a psychologist o r teache r t o plac e disability i n a mor e accurat e an d realisti c perspective . Further, ther e ha s bee n minima l critica l analysi s withi n thes e fields o f thei r paternalisti c impulses . Wor k i n disabilit y studie s ha s critiqued th e tendencie s o f individua l practitioner s an d institution s to assum e that the y know what i s best fo r disable d people . Practice s exist tha t limi t freedom , infantiliz e peopl e wit h disabilities , forc e dependency, creat e an d perpetuat e stereotype s throug h th e us e o f tools suc h a s testin g an d diagnosis , constric t pleasure , an d limi t communication an d politica l activis m amon g disable d people . When intervention s ar e base d o n th e projection s an d need s o f professionals o r ar e drive n b y maintenanc e o f th e statu s qu o i n government, medicine , o r education , the n disable d peopl e hav e a vested interest , fo r ou r ow n sanit y an d well-being , i n questionin g whose interest s ar e being served . The generalize d an d specialize d applie d fields shoul d integrat e their program s an d educat e thei r student s t o vie w disabilit y a s a variable tha t shoul d b e considere d i n thei r approac h t o client s an d students rathe r tha n a s a characteristi c tha t set s disable d peopl e apart. Withi n thos e merge d programs , advance d trainin g i n variou s

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specializations ca n b e accomplished . A counselo r wit h particula r expertise, fo r instance , i n pregnancy-preventio n technique s fo r women wit h mobilit y impairment s o r a n educatio n specialis t fluent in America n Sig n Languag e ar e valuabl e professionals , bu t prepar ing peopl e wit h thi s typ e o f expertis e doesn' t necessitat e separat e training programs . Another proble m wit h th e division s o f teache r educatio n pro grams int o specia l educatio n an d genera l education , an d counselin g programs int o rehabilitatio n an d genera l counselin g programs , i s that a barrie r prevent s th e disseminatio n o f realisti c informatio n about disabilit y acros s tha t divid e an d prevent s critica l examinatio n of th e medicalizatio n o f disability . Althoug h I argu e elsewher e i n the boo k tha t a curriculu m base d o n interventio n an d geare d toward individua l chang e i s no t withi n th e provinc e o f disabilit y studies, i t i s tim e fo r course s i n disabilit y studies , fro m a libera l arts perspective , t o b e introduce d int o th e applie d fields. Th e sociopolitical perspective s an d knowledg e bas e would forc e reexam ination o f the conceptual foundation s o n which th e divided practic e has bee n based , an d contextualiz e students ' knowledg e o f disabilit y in th e historical , philosophical , aesthetic , literary , an d othe r bodie s of knowledg e tha t shap e ho w the y vie w disabilit y an d th e disable d people the y are to work with . My issu e is not wit h th e existenc e o f th e applie d fields, althoug h I obviousl y hav e concern s abou t som e o f thei r organizin g princi ples, i t i s with th e dominanc e o f th e conceptualization s emanatin g from thos e fields o n th e stud y o f disability . Further , a t time s whe n I o r other s hav e argue d fo r th e inclusio n o f disabilit y studie s i n campus-wide curriculu m transformatio n efforts , ou r argument s ar e dismissed wit h th e explanatio n tha t th e stud y o f disabilit y i s no t slighted i n th e academ y bu t i s covere d i n dept h i n th e applie d fields. Bu t disabilit y studies ' perspective s ar e no t presen t i n eithe r the libera l art s o r i n th e applie d fields.

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SPLITS WITHI N TH E LIBERA L ART S

It i s no t onl y wha t w e teac h i n th e libera l arts , discusse d i n th e section o n conten t below , bu t wher e w e allocat e spac e fo r discus sion o f disabilit y tha t create s problems . Line s ar e draw n withi n disciplines, parcelin g of f particula r domain s o f a field fo r th e stud y of disability , an d line s ar e draw n betwee n differen t disciplines , blocking th e entr y o f theoretica l formulation s an d methodologica l tools fro m on e disciplin e int o territor y commandeere d b y another . These tw o problems—split s betwee n libera l art s disciplines , an d splits within eac h o f the disciplines—ar e o f concer n here . An exampl e o f th e latte r typ e o f spli t ca n b e see n i n sociology . One da y I aske d a facult y membe r i n sociolog y whethe r materia l from lesbia n an d ga y studies an d fro m disabilit y studie s wa s repre sented i n th e department' s curriculum . H e sai d tha t i t was ; th e material wa s covere d extensivel y i n a cours e require d o f al l majors . Which course ? Th e sociolog y o f devianc e wa s th e not-unexpecte d reply. H e assure d m e tha t sociologists ' idea s abou t devianc e wer e quite differen t fro m commonl y hel d definitions , bu t I wa s no t assured tha t student s coul d avoi d makin g tha t association , nor , d o I suspect , ca n faculty . Furthermore , eve n i f th e cours e conten t i s focused o n deviance-making , a usefu l investigatio n fo r understand ing th e socia l constructio n o f disability , th e cours e titl e depict s deviance a s a n absolut e state . I n discussin g suc h course s i n "Th e Poverty o f th e Sociolog y o f Deviance : Nuts , Slut s an d Preverts, " Liazos (1972 ) note s tha t thei r "emphasi s i s still on th e 'deviant ' an d the problems ' he presents t o himsel f an d others , no t o n th e societ y within whic h h e emerge s an d operates. " Liazo s the n add s tha t textbook authors ' "mai n concer n i s t o humanize an d normalize th e 'deviant,' t o sho w tha t h e i s essentially n o differen t fro m us . But b y the ver y emphasi s o n th e 'deviant ' . . . th e opposit e effec t ma y have bee n achieved " (104) . Similarly, psycholog y reserve s abnorma l psycholog y fo r th e ma jor coverag e o f behavio r an d characteristic s o f a particula r categor y 84 D I V I D E D CURRICULU M

of disabled people , those with menta l illness . Other genera l courses , such a s child development, accordin g to th e textbooks IV e reviewe d carefully fo r th e pas t te n years , mis s multipl e opportunitie s t o discuss th e ful l rang e o f childre n an d thei r motor , sensory , social , emotional, an d cognitiv e development . Course s i n developmen t and i n eac h o f thos e specifi c domain s o f development , i f the y discuss disabilit y a t all , describe childre n an d adult s with a range o f disabilities almos t exclusivel y i n term s o f pathology , deficit s an d abnormalities. Suc h textbook s could , fo r example , describ e th e similarities an d difference s i n languag e developmen t fo r dea f an d hearing children , o r discus s th e way s tha t childre n wit h visua l o r mobility impairment s develo p thei r understandin g o f spatia l rela tions. Thes e an d othe r example s coul d focu s o n whic h skill s o r abilities childre n rel y o n t o accomplis h thes e tasks , an d whic h accommodations facilitat e optima l development . Educational psycholog y textbook s generall y discus s childre n with disabilitie s exclusivel y i n chapter s title d "Categorie s o f Excep tional Children, " "Educatin g Student s wit h Specia l Needs, " o r "Exceptional Students. " Th e chapter s ofte n includ e section s o n specific disabilities , wit h heading s designatin g particula r type s o f "disorders" o r "impairments. " Th e thrus t o f th e chapter s an d th e language use d i s dens e wit h a defici t mode l o f disability : wha t th e child i s incapable o f or what th e chil d ha s difficulty with , al l due t o disability. Th e remainde r o f the textboo k i s devoted t o th e learnin g abilities o f th e res t o f th e studen t body . I t woul d b e mor e fruitfu l to acquain t student s wit h th e skill s an d abilitie s disable d an d non disabled childre n us e t o negotiat e thei r worlds , th e similaritie s an d differences i n thos e capacities , an d ho w t o enhanc e them . Courses i n huma n sexuality , whethe r taugh t i n psycholog y de partments o r i n healt h education , rarel y integrat e informatio n o n the social , psychological , an d physica l component s o f disabled peo ple's sexuality . I f informatio n i s include d o n disability , i t i s likel y to appea r i n separat e section s o r separat e chapter s o f th e textbooks , 85

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where i t i s primaril y state d i n term s o f deficit s o r pathology . I t i s rare fo r disable d wome n an d me n t o b e integrate d int o th e spec trum o f huma n sexua l behavior , interests , needs , an d problems . Further, althoug h disable d peopl e s o often repor t tha t socia l factor s influence thei r sexua l experienc e mor e profoundl y tha n physiologi cal factors , thes e ar e eve n les s frequentl y discusse d (Linto n an d Rousso 1988 ; Linton 1990 ; Waxman an d Gil l 1996) . Particular socia l scienc e courses , suc h a s th e sociolog y o f health , medical anthropology , an d healt h psychology , acknowledg e th e presence o f disability a s an importan t variabl e i n huma n communi ties. That focu s provide s a n antidot e t o th e invisibilit y o f disabilit y in general . Although thes e course s avoi d som e o f th e pathologizin g stigma o f abnorma l psycholog y o r th e sociolog y o f deviance , the y still tend t o reduc e disabilit y to a health o r medical issue . That vie w needs t o b e contextualized i n th e scholarshi p tha t present s disabilit y or disable d peopl e i n term s o f huma n variation , a s politica l cate gory, a s oppresse d minority , a s cultura l group , o r i n an y wa y tha t shows disability' s significanc e a s a n organizin g principl e i n huma n communities an d i n th e constructio n o f idea s abou t huma n com munities. Bu t fo r thos e course s t o provid e tha t context , th e knowl edge need s t o b e develope d acros s th e spectru m o f libera l art s disciplines. The stud y o f science is , for th e mos t part , kep t separat e fro m al l other academi c areas , a divisio n tha t ha s bee n problemati c fo r th e study o f disabilit y an d o f women . "[F]eminist s ar e attemptin g t o erode th e boundar y betwee n scienc e an d nonscienc e b y claimin g that th e science s ar e social . . . . I f scienc e i s socia l practice , a s feminists contend , the n the y ca n stud y i t i n th e sam e way s the y study othe r kind s o f socia l practice " (Shumwa y an d Messer Davidow 1991 , 210-11) . Disabilit y studie s ha s it s ow n bon e t o pick wit h thi s intractabl e boundary . Keepin g th e scienc e an d non science domain s separat e an d privilegin g medica l an d scientifi c

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views o f disabilit y ove r socia l an d politica l perspective s reinforce s the ide a tha t disable d people' s bes t hop e i s i n th e treatment s and cure s offere d b y th e sciences . Further , th e separatio n prevent s interference i n science's bailiwick by the meddlesome gaz e of sociologists, political scientists , an d historians . Fro m a disability perspec tive, such endeavor s a s genetic testing , prenata l screenin g an d selec tive abortion , determinatio n o f qualit y o f life , an d eve n th e mos t basic buildin g block s o f medicin e an d biology , suc h a s the identifi cation an d labelin g of symptoms an d syndromes , are rife with socia l meaning an d consequences . Courses i n th e histor y o r philosoph y o f scienc e o r medicin e would b e usefu l place s t o debun k th e inviolat e authorit y o f th e "empirical" fields o n th e stud y o f disability an d expos e thei r invest ment i n socia l agendas . I f thos e course s wer e t o analyz e th e conse quences o f particular philosophies , methodologies , an d practice s o n the people labeled "patients " in thei r constellation , they , alon g wit h a revise d sociolog y o f healt h and/o r medica l anthropology , coul d be usefully incorporate d int o a disability studies' major . Although th e abov e examinatio n o f th e socia l an d har d science s indicates th e narrow , pathologize d conceptualization s o f disabilit y available i n tha t curriculum , I not e tha t disabilit y is , t o som e degree, discussed i n thes e domains. What i s absent fro m th e curric ulum i s the voice o f the disable d subjec t an d th e stud y o f disabilit y as idea , a s abstrac t concept , an d i t i s i n th e humanitie s tha t thes e gaps ar e mos t apparent . I t i s ther e tha t th e meaning s attribute d t o disability an d th e proces s o f meaning-making coul d b e examined . Although th e so-calle d reflectiv e disciplines , suc h a s philosophy , literature, som e aspect s o f history , rhetoric , art , an d history , evok e disability everywhere , the y see m unabl e t o reflec t o n it . I t appear s in treatise s o n th e ravage s o f war , aestheti c theorie s tha t expoun d on perfec t form , metaphor s drippin g wit h disabilit y imagery , mod ernist notion s o f progress , an d artisti c representatio n o f anomalou s

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bodies. Yet , outsid e th e disabilit y studie s literature , i t i s barel y "unpacked/' Disabilit y ha s become , then , lik e a gues t invite d t o a party bu t neve r introduced . The solution s t o th e omission s an d distortion s migh t b e found in th e curriculum refor m effort s takin g place in the nam e of diversifying, democratizing , o r balancin g th e curriculum . A s w e wil l se e next, disabilit y studie s ha s rarel y been include d i n thos e endeavors . THE OMISSIO N O F DISABILIT Y STUDIE S FRO M TH E MULTICULTURAL/DIVERSITY CURRICULU M

Often th e debat e ove r diversit y an d multicultura l curriculu m transformation i s betwee n thos e i n favo r o f maintainin g th e tradi tional cano n an d thos e who challeng e it s intellectual authority . Bu t there i s another division , seemingl y les s politicall y charge d becaus e it i s within th e rank s o f those alread y i n favo r o f a more democrati c and universa l curriculum . Tha t debat e center s o n th e goal s o f these endeavor s an d th e dimension s o f diversit y tha t shoul d b e represented. Bot h debate s hav e a politica l component . The y ar e determined b y th e powe r o f th e idea s a s wel l a s th e powe r o f th e people puttin g fort h th e ideas . Bot h debate s ar e worthwhile , bu t the debat e withi n th e diversit y movemen t i s les s visibl e an d th e power relation s amon g th e participant s no t carefull y examined . Major curriculu m transformatio n i s a dynamic process ; disagreement i s inevitabl e and , i n fact , desirable . Bu t th e productiv e dia logue i s often muddie d b y th e nee d t o protec t hard-wo n gain s an d to attai n legitimacy . Henr y Loui s Gates , Jr . (1993 ) posit s tha t th e "extended face-of f wit h conservatis m ha s ha d a deformin g effect , encouraging multiculturalis m t o kno w wha t i t i s agains t bu t no t what i t is for" (7). 2 The term s diversity and multicultural describ e various curriculu m endeavors rangin g fro m elementar y schoo l readin g guide s t o teac h empathy an d acceptanc e o f difference , t o graduat e seminar s tha t utilize race , ethnicity , gender , and , a t times , sexua l orientation , 88

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class, an d disabilit y a s analyti c categories . I t i s no t a simpl e linea r progression, approachin g th e sam e basi c idea s i n increasingl y so phisticated an d abstrac t way s a s th e student s ge t older . Th e idea s that driv e thes e endeavor s resul t i n varie d manifestation s reflectin g the differen t agenda s tha t underli e them . Som e ar e relate d t o cul tural diversit y an d teachin g abou t difference s amon g people ; other s have a mor e specifi c orientatio n towar d exposin g socia l an d eco nomic inequitie s tha t hav e determine d th e ways society and knowl edge ar e configured . Whil e muc h o f th e multicultura l literatur e accepts "cultura l appreciatio n a s perhap s th e centra l goa l o f bot h our classroom s an d large r society , [i t fails ] t o rais e question s abou t prevailing politica l an d economi c arrangements . Teachin g abou t diversity substitute s fo r teachin g abou t equality , politic s an d th e structures o f oppression" (Watkin s 1994 , 110) . The perspective s o f disabled peopl e an d th e field o f disabilit y studie s ar e conspicuousl y absent acros s a broa d rang e o f endeavors , bu t mos t notabl y fro m those in th e higher educatio n curriculu m an d i n thos e with a socialreconstructionist orientation . Curriculum project s an d researc h endeavor s labele d "multicul tural" o r "diverse, " thoug h tremendousl y varie d i n purpos e an d scope, focu s primaril y o n scholarshi p tha t analyze s race/ethnicit y and gender . Fo r numerou s reasons , many stil l t o b e articulated, th e construction o f "multicultural " place s thos e perspective s a t th e center o f th e discourse . Th e histor y an d th e consequence s o f tha t construction ar e fo r th e mos t par t invisible , givin g th e impressio n that "multiculturalism, " a s i t i s no w rendered , shoul d b e th e onl y focus o f curriculu m reform . Minnic h (1990 ) i n Transforming Knowledge states i n a number o f ways that i t i s best t o focu s o n th e "three fundamenta l variable s o f class , sex/gender , an d race , fo r when othe r hierarchica l distinction s hav e bee n mos t virulent , the y have often partake n o f the conceptual/emotiona l 'language ' o f race, class an d gender , suggestin g a basi c leve l o f significanc e fo r thos e three" (68) . I agre e tha t thos e categorie s hav e dominate d th e orga 89

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nization o f knowledg e i n th e are a o f curricula r transformation , bu t I don' t thin k tha t becaus e othe r potentia l organizin g structure s have depende d o n th e tool s o f the mor e frequentl y use d categories , that create s their significance . Th e histor y of the decisions t o situat e those lense s i n th e cente r ha s yet t o b e written . A numbe r o f objection s hav e bee n raise d t o th e inclusio n o f disability studie s i n tha t constellation ; thes e relat e t o question s about th e field's validit y an d th e adequac y o f it s theoretica l an d empirical footings . Peopl e ar e als o concerne d tha t th e diversit y agenda i s to o inclusiv e an d wil l los e it s potenc y i f th e categor y i s too elastic . Thes e ar e legitimat e questions , bu t I hav e no t see n much activ e engagemen t wit h thes e issues . Specifically, peopl e wh o either ignor e th e issu e o f disabilit y altogethe r o r overtl y rejec t i t a s an analyti c categor y hav e not , t o m y knowledge , actuall y engage d with th e scholarshi p i n thei r writin g no r hav e disabilit y studie s scholars bee n invite d t o participat e i n plenar y session s a t confer ences wher e a n ope n dialogu e coul d tak e place . Occasionall y th e terms ability o r disability ar e recite d i n a lis t o f issues , bu t the y ar e never discussed . Women's studie s i s a significan t potentia l sit e fo r inquir y int o disability becaus e o f th e man y intersection s betwee n idea s abou t women an d abou t disability , an d becaus e o f th e potentia l fo r knowledge b y an d abou t disable d peopl e t o infor m women' s stud ies. Althoug h a larg e portio n o f th e disabilit y studie s literatur e addresses women' s issues , women's studie s ha s bee n slo w t o recog nize disable d women' s issue s an d t o integrat e disabilit y studie s int o its work. Thomso n (1994 ) state s tha t feminist discussion s seldom include disability in their taxonomie s of difference . Althoug h ethnicity , race , an d sexualit y ar e fre quently knitte d int o curren t feminis t analysis , th e logica l lea p toward seein g disabilit y a s a stigmatize d socia l identit y an d a reading of the body remains largely untaken. (585 ) 90 DIVIDED CURRICULU M

Further, althoug h ther e ha s bee n som e progres s i n th e pas t two years , organization s representin g multicultura l an d diversit y initiatives, cultura l studies , feminis t studies , lesbia n an d gay , queer , African American , Asia n American , Nativ e American , an d Latino / Latina studies, have barely recognized disable d people' s perspective s on panel s or plenary sessions. Further, the y have, at times, exclude d disabled peopl e b y no t providin g acces s an d accommodation . Al though eac h o f thes e fields ma y see m marginal , the y hav e forme d their ow n shap e and textur e and rende r thei r ow n authority . There fore, th e knowledg e tha t the y privileg e an d th e knowledg e the y marginalize warran t consideration , particularl y fro m th e perspec tives o f th e margins . I t seem s tha t scholar s i n thes e areas , give n their struggle s an d thei r dedicatio n t o challengin g privilege d dis course, would welcom e th e type s o f inquirie s tha t disabilit y studie s can provide . The problem s discusse d abov e presen t a challenge t o curriculu m reform effort s geare d towar d diversifyin g th e curriculu m an d t o individual facult y member s workin g t o creat e a mor e accurat e an d representative knowledg e base . Th e biase s an d point s o f vie w ar e usually no t explicate d i n thos e endeavors , givin g th e appearanc e that th e projec t circumscribe s th e onl y logica l domai n o f curricu lum transformation . Onl y a few peopl e ar e talkin g abou t th e socia l construction o f "multicultural " an d "diversity, " an d th e problem s and pitfall s o f their construction . For instance , Gate s (1993 ) asks : What i s this crazy thing calle d multiculturalism ? A s an overvie w of th e curren t debat e suggests , a salien t difficult y raise d b y th e variety o f use s t o whic h th e ter m ha s bee n pu t i s that multicul turalism itsel f ha s certai n imperia l tendencies . It s boundarie s have not bee n eas y to establish. W e ar e told tha t i t i s concerne d with th e representatio n o f difference—bu t whos e differences ? Which differences ? (6 ) 91 D I V I D E D CURRICULU M

Gates's comment s poin t ou t th e inadequac y o f th e analysi s under taken b y those involve d i n thes e endeavors. There ar e majo r aspect s of theor y tha t nee d t o b e articulated . Further , th e mechanism s used, bot h politica l an d intellectual , t o marginaliz e o r exclud e disability studie s ar e hidde n an d nee d t o b e addresse d i n a n ope n forum, engagin g disabilit y studie s scholar s an d thos e i n th e inne r circle o f curriculu m reform . Th e analysi s o f th e validit y an d utilit y of th e construct s o f multicultural an d diversity , an d th e criteri a fo r inclusion i n suc h endeavor s ca n benefi t al l concerned . Th e futur e of al l suc h endeavor s i s uncertain . Som e hav e bee n folde d int o cultural studie s o r eve n th e mor e secula r America n studies . Thes e incorporations hav e their ow n consequence s fo r th e scholarship, fo r curriculum transformation , and , significantly , fo r th e type s of social change tha t th e scholarshi p ca n engender . Whichever shap e thes e ne w domain s take , i t i s a n affron t tha t disability studie s i s dismissed ou t o f hand. I t i s also illogical . I f th e lens created b y these inquiries i s applied t o disable d people' s experi ence an d t o idea s abou t disability , th e similaritie s a s wel l a s th e potential fo r uniqu e contribution s woul d b e apparent . Disabilit y studies shares with thes e other fields a number o f conceptual frame works, theoretica l an d ideologica l roots , an d simila r imperatives . Moreover, incorporate d int o diversit y initiatives , disabilit y stud ies ca n contribut e uniqu e insight s int o a numbe r o f theoretica l questions tha t aris e from thes e endeavors. Fo r instance , What func tions d o th e creatio n o f otherness , marginalization , an d patholog y serve i n a society , an d ho w ar e thes e processe s relate d t o th e intellectual legac y o f th e society ? Ho w doe s cognitive , emotional , sensory, an d physica l variatio n relat e t o th e formatio n o f identit y and, i n turn , ho w d o thes e facet s o f identit y shap e th e formulatio n of scholarship ? Wha t ar e th e particula r intellectua l an d politica l formations tha t allo w fo r a country' s interna l colonizatio n o f a group o f people ? Ho w ca n curren t inquirie s int o th e ide a o f th e body b e enhance d b y a n understandin g o f th e socia l realitie s o f 92

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people wit h anomalou s bodies ? Ho w doe s grou p cohesion , culture , and identit y for m whe n ther e i s n o intergenerationa l transmissio n of culture, a s with mos t lesbia n an d gay , an d disable d people ? The structur e o f th e curriculu m als o need s t o b e examine d i n terms o f deeper divide s an d faul t lines . 3. CONTEN T O F CURRICULUM

What i s i t w e sa y o r don' t sa y tha t contribute s t o th e particula r version o f disabilit y perpetrate d i n th e academy ? I s there a n ableis t discourse tha t permeate s th e curriculum , an d i f s o wha t ar e it s manifestations? Wha t ar e th e representations , dominan t narratives , metaphors, an d theme s tha t contribut e t o ableis t perspectives ? In th e previou s sectio n I argue d tha t th e division s amon g an d within fields preclud e adequat e stud y o f disability . Her e I a m concerned wit h th e obstacle s tha t exis t becaus e th e presen t knowl edge bas e i s s o steepe d i n a particula r versio n o f disabilit y tha t i t interferes wit h ne w learning . Thi s sectio n will examine th e sciences, social sciences , an d th e humanitie s an d discus s thei r conten t fro m the perspectiv e o f disability . SCIENCE

Until relativel y recentl y th e science s hav e steadfastl y refuse d t o examine th e socia l meaning s an d th e socia l consequence s o f thei r work. Th e histor y an d impac t o f biology an d genetic s hav e particu lar salienc e fo r disable d people' s lives . Othe r domain s d o not , a t the moment , see m a s relevant , bu t i t ma y b e tha t the y hav e ye t t o be fully mine d fo r implication s fo r th e stud y o f disability . Evelyn Fo x Keller' s wor k o n feminis t interpretation s o f th e practice o f science , particularl y he r analysi s o f th e wor k o f Barbar a McClintock, i s a useful startin g poin t fo r thinkin g abou t th e ableis t constructions i n th e sciences. McClintock was a botanist an d Nobe l Prize winner abou t who m Kelle r ha s written extensively . Keller (1985 ) note s tha t McClintoc k share d with othe r scientist s 93

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the wis h t o develo p "reliabl e (tha t is , shareabl e an d reproducible ) knowledge o f natura l order " (166) . Yet McClintock' s ai m wa s no t prediction, manipulation , an d contro l bu t "a n understandin g o f the worl d aroun d us , tha t simultaneousl y reflect s an d affirm s ou r connection t o tha t world " (166) . I n he r analysis , Kelle r challenge s the subject/objec t spli t i n science , th e fracturin g o f matte r int o increasingly smalle r an d mor e abstrac t unit s o f study , an d th e proclivity o f science t o stud y thes e unit s i n isolation . Research o n an d abou t disabilit y ha s certainl y followe d th e traditional pat h o f prediction an d control , subject/objec t split , an d the stud y o f disabilit y i n isolatio n fro m th e environment . Thes e goals ar e particularl y apparen t i n recen t genetic s research , whic h has focuse d o n prediction , an d the n o n control , b y mean s o f prenatal screenin g an d selectiv e abortion , o f genetically determine d disabilities i n th e population . Wit h geneticists ' interes t i n an d capability t o stud y increasingl y smalle r an d mor e abstracte d ele ments o f huma n existence , i t i s possibl e fo r the m t o distanc e themselves eve n furthe r fro m th e huma n consequence s o f thei r behavior. And , a s Kelle r (1985 ) states , th e "question s on e ask s an d the explanation s tha t on e finds satisfyin g depen d o n one' s a prior i relation t o th e object s o f study . . . . [T]h e question s aske d abou t objects wit h whic h on e feel s kinshi p ar e likel y t o diffe r fro m ques tioni aske d abou t object s on e sees as unalterably alien " (167) . Scientists, th e vas t majorit y nondisabled , d o thei r wor k seale d off fro m th e critique s comin g fro m th e disable d communit y an d from th e type s o f analyse s offere d i n disabilit y studies . Thi s scree n keeps the m a t a distance fro m thei r idea s and als o from th e subject s of thei r investigation . I n mor e genera l ways , a s Kelle r (1985 ) re minds us , th e objectifyin g len s o f science i s kept a t a distance fro m the objec t o f stud y b y th e ide a tha t th e natura l worl d i s " 'blind , simple an d dumb' , ontologicall y inferior " (167) . In Keller' s analysi s of th e relationshi p betwee n idea s abou t scienc e an d gender , sh e recognizes tha t scienc e ha s constructe d th e "objec t (nature ) a s fe 94

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male an d th e paralle l namin g o f subjec t (mind ) a s male/ ' i n tha t "nature [is ] cast i n th e imag e of woman a s passive, inert, an d blind " (174-75). I n thi s picture , a numbe r o f name d bu t unexplaine d terms hav e meaning s i n th e science' s ecology . Th e namin g o f women an d th e namin g o f natur e shar e a histor y o f element s tha t are simpl e an d knowable , an d therefor e controllable . Th e min d (male), separate fro m thes e objects, i s opaque an d unknowable , an d impervious t o control . Keller' s explanatio n o f tha t fantas y provide s an excellen t an d usefu l gendere d readin g o f science . Wha t i s miss ing fro m he r analysi s i s th e meanin g o f th e invoke d term s simple, blind, an d dumb. I n thei r us e i n thi s descriptio n the y appoin t disability t o women , bu t th e analysi s stop s shor t o f notin g th e gendering o f disability , an d th e disabilit y readin g o f thes e associa tions. Although I would no t us e simple, blind, or dumb, a s intone d here, t o describ e anyon e I know , th e term s hav e often bee n use d t o ascribe t o differen t group s o f disabled peopl e characteristic s beyon d those offere d b y thei r impairments . Keller' s us e o f "blind , simpl e and dumb " i s yet anothe r incidenc e o f the us e of disability imager y as a signa l t o thin k abou t insentient , nonpurposeful , an d ignoran t behavior. I n fact , th e thesauru s o n m y compute r list s ignorant, oblivious, obtuse, unaware, irrational, an d violent a s alternative s under blind. Disabled people , lik e wome n an d th e natura l worl d i n general , are ofte n rendere d a s passive . Thi s ide a i s sustaine d b y othe r idea s available bot h withi n an d outsid e science . Consider , fo r instance , how terminolog y use d fo r som e group s o f disable d peopl e eras e complexity, intentionality , an d competence . Invalid, deaf and dumb, moron, idiot, an d wheelchair-bound ar e amon g descriptor s that inactivat e th e subject , makin g i t easie r t o objectif y an d stud y people describe d i n thi s wa y a s specimens . Als o conside r ho w the psychoanalyti c theorie s discusse d earlie r an d othe r psycholog y research describ e disable d peopl e a s preoccupie d wit h thei r bodil y states. A s figure s livin g i n th e body , no t i n th e mind , disable d 95

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people ar e configure d a s childlike , eve n infantlike , actin g o n pri mary drive s rathe r tha n engagin g i n purposefu l behavior . What ar e th e consequence s o f thinkin g abou t disabilit y i n thes e ways? Conside r ho w th e scientifi c community , th e media , an d society i n genera l hav e embrace d technologica l breakthrough s i n prenatal screenin g an d th e "solutions " foun d i n selectiv e abortion . Attempting t o eradicat e disabilit y o r foolishl y believin g tha t i t i s possible t o d o s o are an actio n an d intentio n wit h consequence s fo r the live d experienc e o f disable d people . Thes e impulse s ma y b e driven b y modernis t goal s o f progres s an d perfection . Th e re maining disable d people , thos e wh o sli p i n unchecked , repudiat e the scientifi c wizardr y an d ru n th e risk , a s w e alway s have , o f receiving th e displace d ange r o f th e frustrate d doctor s an d thei r devoted followers . The pointe d an d provocative question s tha t some disability stud ies scholars ar e askin g geneti c researcher s is , Are you sayin g m y lif e is no t wort h living , tha t I shoul d no t hav e bee n born , tha t I don' t have a plac e i n you r versio n o f th e world ? Th e enormou s amoun t of money th e governmen t i s giving t o th e Huma n Genom e Projec t to identif y geneti c marker s fo r disabilit y stand s i n contras t t o th e money provide d t o existin g disable d people . Scientists an d societ y a t larg e ar e unuse d t o disable d peopl e a s assertive, active , and , a t times , aggressive . The y ar e no t use d t o disabled peopl e wh o hav e littl e interes t i n bein g cure d o r i n elimi nating disability . I f scientist s recko n wit h tha t activ e voice , the y may begi n t o se e th e disable d subjec t a s les s passiv e an d controlla ble. Th e activ e voic e o f disable d peopl e an d th e activate d subjec t have a plac e i n a comprehensiv e an d representativ e scienc e curric ulum. A revisione d scienc e curriculu m shoul d direc t attentio n t o th e place o f disabilit y i n th e environment , it s meanin g an d function . Barbara McClintock' s research , als o discusse d i n chapte r 5 , o n th e relation o f anomalou s characteristic s o r member s o f th e specie s t o 96

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the whole , point s th e wa y towar d conceptualizin g disabilit y a s a piece o f th e puzzle , a part o f th e fiber o f life. Scienc e an d medicin e might tur n thei r attentio n t o th e useful , necessary , o r adaptiv e aspects o f disability o r mayb e eve n th e irrelevan t o r neutra l aspects . Another McClintock , Martha , a professo r o f biopsycholog y a t th e University o f Chicago , ma y als o hav e somethin g t o offer . Sh e i s overseeing th e constructio n o f a n institut e an d laborator y t o stud y the lin k betwee n environmen t an d biology , wher e th e "focu s wil l be on a top-down approac h t o understandin g biology—goin g fro m the whole organis m towar d th e innermos t laye r of the gene—rathe r than th e standar d bottom-up , beginnin g with th e gen e an d lookin g outward" (Angie r 1995 , C5) . Thes e idea s will servic e disable d people onl y i f scientist s invit e a disabilit y readin g o f thei r work . That readin g wil l servic e scienc e onl y i f theor y begin s t o kni t disability int o th e fabri c o f life, threa d b y thread , ide a b y idea . SOCIAL SCIENCE S

Psychology, anthropology , economics , politica l science , sociol ogy an d histor y ar e usefu l discipline s fro m whic h t o examin e dis ability. Eac h o f these fields provides th e researc h tool s an d theoreti cal materia l neede d t o she d ligh t o n disabilit y a s a socia l construc t and o n th e manifestation s an d consequence s o f particular construc tions. The behaviors , social practices, economic implications , politi cal mechanisms , an d cultura l function s relate d t o disabilit y ar e potentially par t o f a representativ e curriculum . Ye t withi n eac h field, i n practice , th e potentia l i s unrealize d becaus e existin g idea s about disabilit y an d discipline-specifi c convention s preclud e ade quate study . In a numbe r o f respects , disabilit y i s studie d mor e consciousl y and deliberatel y a s effect rathe r tha n cause . Disability i s understoo d best a s a tragic consequence o f war, fate , moder n technology , God' s will, poverty , o r th e failur e o f medicine' s omnipotence . Rendere d as effect rathe r tha n cause , disabilit y i s inactivated an d muted . I t i s 97 D I V I D E D CURRICULU M

assumed t o b e somethin g t o b e avoide d o r eliminate d and , whe n i t exists, t o b e cure d o r ameliorated—somethin g t o b e acte d o n o r reacted to . Whe n depicte d a s causa l agents , disabilit y o r disable d people ar e mos t ofte n studie d i n a deterministi c manner , a s th e predictor variable ; thi s hold s fo r studie s o f individuals ' respons e t o their ow n disability , studie s o f nondisable d people' s respons e t o disabled people , an d th e broade r evaluatio n o f variou s societies ' responses t o disability . I t i s rar e fo r huma n variation , an d th e particular configuration s calle d disabilities , t o b e studie d a s vari ables situated i n a web o f other variables . Consider, fo r instance , th e prevailin g idea s abou t th e relation ships tha t disable d peopl e hav e t o thei r disabilities . I n psychology , many o f thes e idea s ar e filed i n th e categor y loosel y calle d "adjust ment literature, " whos e focu s o n individua l adjustmen t reinforce s the idea that disability is an individual proble m requirin g individua l interventions. I n th e cas e o f acquire d disabilities , thos e tha t occu r after birth , th e relationshi p i s described i n term s o f people's adjust ment to thei r disabilities . Wha t i s missin g i n thi s pictur e ar e th e myriad adjustment s following disability . Althoug h th e ide a o f ad justment i s inadequat e t o describ e th e shift s i n identity , commu nity, culture , role , an d experienc e tha t ofte n tak e plac e followin g the onse t o f significant disability , th e latte r phras e a t leas t provide s space for th e investigation o f some of the social transformations an d adaptations tha t occur . The onse t o f disability initiate s intrapsychi c adjustments no t onl y t o change s i n bodil y configuratio n an d func tioning, t o sensor y loss , o r t o shift s i n emotiona l o r cognitiv e makeup bu t t o concomitan t change s i n others ' perception s o f th e disabled person , i n rol e expectations , i n socia l positioning , i n he r or his place in the family constellation , an d i n acces s to educational , economic, an d socia l opportunities . Th e dynami c relationshi p among al l thes e variable s i s th e climat e following th e onse t o f disability. Attempting t o isolat e and stud y the individual' s intrapsy chic adjustmen t to disability fro m tha t mi x i s extremel y difficult . 98

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Studies tha t attemp t t o d o s o overdetermin e disabilit y itself , as signing far too much weight to it. Instead, if the contextual contin gencies were evaluated t o determin e thei r contributio n i n shapin g response t o disability , w e migh t lear n mor e abou t th e way s tha t the availabilit y o f accessibl e transportation , socia l opportunities , employment options , an d othe r factor s relat e t o th e experienc e o f disability. It would b e more useful t o study the degree of fit of the individual i n th e environmen t a s a predictor o f adaptatio n rathe r than adjustment . The psychoanalyti c literatur e als o has a deterministic ben t wit h respect t o th e stud y o f people' s respons e t o disability . Harri s an d Wideman (1988 ) write that "classica l psychoanalytic thought treat s disability as a precursor t o narcissistic disorders, and a compromise to very early primary narcissism. . . . [T]he individual's experience of disability i s viewed onl y a s a negative aspec t o f self-image, a s a defense agains t geneti c weakness, almos t inherentl y an d inevitabl y a featur e o f th e individual' s psychi c life " (117) . I n severa l place s over the years the psychoanalytic literature has posited that disabled people's nee d t o atten d t o bodil y function s drain s psychi c energy , causing narcissisti c preoccupatio n wit h th e sel f an d resultin g i n immaturity and difficulty formin g adequat e object relations . Alfred Adle r pu t fort h a deterministi c argumen t i n hi s idea s about compensatio n fo r feeling s o f inferiority . Althoug h h e cam e to se e al l human s a s strugglin g wit h feeling s o f inferiority , h e developed th e ide a based on interes t i n those with "orga n inferior ity." Colema n an d Croak e (1987 ) accep t Adler' s ide a uncritically . They conducte d researc h o n "twenty-si x childre n . . . randoml y selected fro m th e Burea u o f Cripple d Childre n rolls " (367 ) t o determine thei r tendenc y towar d "overcompensation. " T o se t th e stage for reportin g thei r findings, they provide examples of people whom the y describ e a s "overcompensating " fo r "thei r defectiv e organs": "Demosthenes, who had a speech impediment and became known fo r hi s grea t oration , an d Frankli n Roosevelt , wh o wa s 99

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crippled b y polio-myelitis , an d becam e presiden t o f th e U.S. " (364). Th e author s se e th e accomplishment s o f thes e famou s me n and o f the children i n their stud y solely as a function o f "compensa tion" fo r thei r disabilities . Although psychoanalyti c theorist s have speculated abou t th e psy chopathology an d eg o deficit s i n peopl e wit h disabilities , particu larly thos e wit h congenita l o r early-onse t disabilities , the y haven' t been s o read y t o propos e a mean s t o appl y thei r theorie s towar d addressing thes e problems . "Muc h psychoanalyti c literatur e o n dis ability support s th e contentio n tha t th e disable d ar e inherentl y unanalyzable" (Asc h an d Rouss o 1985 , 4) . Thi s stanc e ha s pre sented particula r obstacle s t o disable d wome n an d me n seekin g psychoanalytic trainin g becaus e psychoanalysi s i s a prerequisit e o r corequisite fo r suc h professiona l training . Feminist critique s o f th e psychoanalyti c literatur e hav e expose d interpretations tha t rende r th e femal e a s weak, envious , immature , and drive n b y emotions . Antidisability message s similarl y ru n ram pant i n th e literature ; passivity , immaturity , narcissisti c preoccupa tion o f disable d people , an d th e overpowerin g influenc e o f disabil ity a s psychi c determinan t ar e entrenche d ideas . Further , readin g the psychoanalyti c literatur e wit h a combine d feminis t an d disabil ity len s reveal s likenesse s i n th e attribution s o f symptom s an d characteristics. Thi s combine d readin g yield s informatio n o n th e feminization o f disabilit y an d th e constructio n o f th e femal e a s disabled i n thi s literature . Disabled people' s view s o n disabilit y ofte n challeng e fundamen tal psychoanalyti c precepts . Explicatin g th e neutral , ordinary , an d even th e positiv e aspect s o f th e disabilit y experienc e tha t man y disabled peopl e hav e expresse d i s aki n t o debunkin g th e myt h o f penis envy . I t i s ofte n startlin g t o nondisable d peopl e tha t man y disabled peopl e d o no t pin e fo r th e nondisable d experience , no r do the y conceptualiz e disabilit y a s a poten t determinan t o f thei r experience. Althoug h wome n ofte n repor t envyin g th e statu s an d 100 D I V I D E D CURRICULU M

privilege o f men , an d disable d peopl e woul d celebrat e th e da y o f attaining equa l socia l status , thes e ar e socia l an d politica l determi nants, no t intrapsychi c ones . In th e social psychology literature, ther e appears t o b e a similarly narrow rang e o f explanation s o f th e disabilit y experience . A larg e body o f research , ofte n calle d attitud e research , ha s looke d mostl y at nondisable d people' s attitude s towar d disable d people . I n thi s picture, disability is the causal agent, bringin g about a response tha t is mediate d b y th e persona l an d demographi c characteristic s o f nondisabled people , whic h ar e sai d t o relat e t o th e qualit y an d intensity o f th e response . I t i s a s i f disabilit y an d disable d peopl e have bee n assigne d a particula r weigh t an d valenc e tha t everyon e agrees upon , an d the n wha t get s measure d i s th e variatio n i n nondisabled peopl e tha t result s i n differen t responses . Hirsc h (1995) critique s Goffman' s positio n i n Stigma, on e o f th e mos t widely use d theoretica l approaches , becaus e i t "assume s tha t i n Western culture s a disabilit y wil l alway s b e interprete d a s a stigm a for th e individua l t o cop e with" (10) . Yet th e weigh t an d valenc e assigne d t o disabilit y ar e no t fixed; they ar e th e product s o f th e prevailin g belie f systems , socia l posi tioning o f disable d people , th e right s an d freedom s accorde d t o disabled peopl e a t th e tim e an d plac e o f th e study , th e degre e o f integration o f disable d peopl e i n th e community , an d a hos t o f other tangibl e and intangibl e factors . Those contingencie s ar e rarel y studied. Further , th e preponderanc e o f attitude researc h o n nondis abled people' s respons e t o disabilit y a s a functio n o f thei r anxiety , racism, socioeconomi c status , an d s o o n yield s dat a o f limite d utility. Without informatio n o n th e contextual variable s i n orde r t o use thes e result s t o bette r th e situatio n o f disable d people , on e would hav e t o desig n individua l intervention s t o alte r th e persona l characteristics o f those with negativ e attitudes. The glu t o f this oneway attitud e researc h prompte d on e o f m y friend s ( a disable d woman), whil e w e wer e sittin g i n th e audienc e a t a conferenc e 101 D I V I D E D CURRICULU M

presentation, t o whispe r t o me , "I' m tire d o f hearing ho w the y fee l about us . Why doesn' t anybod y as k how we fee l abou t them! " Moreover, thes e studies primarily measur e the source and qualit y of negativ e attitudes . I n psychology , persona l attitude s ar e studied ; in sociolog y an d anthropology , studie s o f devianc e o r th e devian t are in order . Bogda n an d Taylo r (1987 ) hav e formulated a sociology of acceptance in respons e t o th e focu s i n sociolog y ove r th e pas t twenty-five year s "o n stigm a an d th e labelin g an d rejectio n o f people wit h negativel y value d physical , mental , an d behaviora l dif ferences (deviant , different , o r atypical) . . . resulting in a sociology of exclusion " (34) . Thei r approac h enable s sociologist s t o stud y integration, acceptance , an d nonstigmatize d relationship s also . Anthropology an d histor y ar e two area s of scholarship tha t coul d paint a broade r pictur e o f disability . Schee r an d Luborsk y (1991 ) define anthropolog y a s th e "cross-cultura l an d holisti c socia l sci ence, [which ] analyze s ho w th e interactio n betwee n cultura l values and beliefs , socia l relations , an d historica l change s affec t pattern s o f daily life an d persona l experience " (1173) . The dynami c interactio n proposed i n anthropology' s missio n coul d yiel d importan t dat a fo r the stud y o f disability . Disabilit y cultur e i s a critica l conceptua l framework i n disabilit y studies scholarship fo r discussin g the share d aspects o f ou r experience , an d th e language , customs , an d artisti c products tha t emerg e fro m tha t experience . T o th e degre e tha t disabled people' s cultur e moderate s o r override s th e cultura l expec tations an d norm s o f th e dominan t group , anthropologist s nee d t o be aler t t o it . Joh n Hockenberr y (1995) , a reporte r wh o spen t a considerable amoun t o f tim e i n th e Middl e East , talk s abou t th e ways tha t hi s experience s a s a disable d perso n diffe r fro m th e dominant America n cultur e h e was raise d in : Americans expec t thing s t o work . I t i s on e o f th e consequence s of bein g a superpower . Disable d peopl e expec t thing s no t t o work whether the y ar e American o r not . I n Israe l an d th e occu 102

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pied territorie s I share d n o languag e o r religio n wit h th e peopl e I met . To my surprise, I discovered tha t we shared a world view that ha d always isolated m e in the United States . (263) For anthropolog y t o addres s disabilit y adequately , th e field would hav e t o atten d t o th e "dail y lif e an d persona l experience " o f disabled peopl e mor e systematicall y an d deliberatel y tha n i t ha s i n the past , an d woul d hav e t o d o s o i n th e contex t o f th e "cultura l values" an d othe r factor s tha t shap e experience . Fe w anthropolo gists hav e systematicall y studie d disable d peoples ' experience , hab its, customs , in-grou p an d out-grou p behavior , stories , an d imag ery, an d fewe r stil l hav e don e s o fro m th e perspectiv e o f disable d people themselves . Groc e an d Schee r (1990 ) blam e th e lac k o n th e commonly hel d assumptio n tha t "i n pre-industria l an d traditiona l societies, disable d individual s ar e no t abl e to , o r ar e no t allowe d t o live past earl y childhood" (v) . They refut e thi s assumption an d not e that existin g data d o no t suppor t thos e contentions . The pervasivenes s o f th e assumptio n help s explai n th e minima l attention anthropologist s hav e give n t o th e stud y o f disabilit y i n traditional societies , bu t a mor e entrenche d proble m ma y b e th e adherence i n th e field t o traditiona l definition s o f cultur e tha t are dependen t o n intergenerationa l transmissio n o f values , beliefs , customs, an d othe r aspect s o f a culture . Tha t tene t structure s most anthropologica l researc h an d interfere s wit h adequat e stud y o f lesbian an d gay , an d disabilit y cultures . I n thes e groups , identifica tion ofte n doe s no t star t unti l adolescenc e o r adulthood , s o th e culture i s transmitted largel y by adults t o othe r adults . Eve n a t tha t time, man y disable d peopl e ar e discourage d b y thei r familie s fro m socializing wit h o r allyin g wit h othe r disable d people ; mor e trou bling, disable d peopl e ma y internaliz e th e norm s an d value s o f th e society an d shu n othe r disable d peopl e fo r fea r tha t the y wil l b e identified wit h th e sociall y margina l group . Nevertheless , despit e these tension s an d despit e som e intragrou p conflicts , th e disabilit y 103

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community ha s become, particularly over the past twenty-five years , strong an d cohesive . Another majo r limitatio n o f anthropolog y i s th e absenc e o f th e active voic e o f disable d peopl e a s researcher s an d a s subjects . Fo r the mos t part , eve n studie s suc h a s the Hankses ' researc h discusse d in chapte r 3 , whic h hav e examine d variou s societie s t o ascertai n how disable d peopl e ar e treate d o r wha t th e prevailin g belief s are abou t disability , evaluat e th e dominant , nondisable d majority' s perspectives an d behavior . On e interpretatio n o f th e absenc e o f disabled people' s perspective s i s tha t disable d peopl e ar e margin alized i n mos t societies ; mos t important , th e societ y fro m whic h the researche r hersel f o r himsel f come s from . Hence , th e researche r enters th e environmen t unprepare d t o find disable d people' s per spectives a valuabl e indicato r o f "cultura l value s an d beliefs. " Fur ther, ethnocentri c bias , meanin g i n thi s cas e th e researcher' s likel y nondisabled status , influence s ho w particula r practice s relate d t o disability ar e interpreted . There i s a tendenc y i n anthropolog y an d i n othe r fields t o vie w response t o disabilit y an d accommodatio n o f disable d peopl e a s a function o f th e scientifi c expertis e an d perceive d socia l advance ment o f a cultur e rathe r tha n a s a produc t o f th e cultura l norm s and expectations , an d th e disabilit y politics . I n doin g so , ther e i s a valorization o f Western practice s an d o f th e perspective s o f th e lat e twentieth century . Anthropolog y ca n loo k t o it s ow n histor y o f internal self-stud y fo r th e tool s t o correc t thi s bias . I n th e nine teenth centur y an d earl y twentieth , anthropolog y playe d a n activ e role i n colonialism . "Anthropology , an d it s mode s o f inquiry , be came particularl y usefu l durin g th e perio d o f colonia l exploratio n and conquest . Colonizer s coul d com e t o kno w th e alie n behavio r of thos e the y were t o exploi t an d subjugate " (Watkin s 1994 , 106) . Anthropologists participate d b y providin g knowledg e abou t th e people t o b e subjugated an d b y presenting th e colonialists ' venture s in th e bes t possibl e light . B y maskin g th e controllin g an d violen t 104

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nature o f th e colonia l process , anthropolog y contribute d t o th e idealization o f colonialism's mission . The heightene d self-consciousnes s o f th e postcolonia l momen t makes anthropolog y a n excellen t locatio n t o examin e ho w it s for mulations an d practice s interfer e wit h accurat e representatio n o f disability i n th e curriculu m an d influenc e disabilit y polic y an d practice. Anthropolog y ha s don e on e o f th e mos t rigorou s self studies o f any field, critiquin g it s role i n th e proces s of colonizatio n of non-Wester n countries . Reflectin g furthe r o n it s ow n history , the field shoul d examin e ho w scholarshi p valorize s practice s tha t include containmen t an d contro l o f disable d people—i n othe r words, th e colonization o f disabled people—withi n ou r ow n shores . Disabled peopl e hav e voice d objectio n t o institutionalization , t o the medica l contro l ove r activitie s an d service s tha t coul d b e trans ferred t o communit y leadership , an d t o th e eclips e o f disabilit y perspectives b y professionals . Institution s an d asylums—severa l o f which wer e calle d "Th e Colony " earlie r i n thi s century—replicat e some o f th e pattern s o f contro l an d containmen t tha t hav e earne d colonization o n foreig n shore s it s ba d name . Postcolonial perspective s offe r anthropologist s insight s int o "th e demand t o spea k rathe r tha n bein g spoke n fo r an d t o represen t oneself rathe r tha n bein g represente d or , i n th e wors t cases , rathe r than bein g efface d entirely " (Fran k 1995 , 13) . As on e exampl e o f the potential o f such a n analysis , Frank, i n The Wounded Storyteller, contrasts thos e "willin g t o continu e t o pla y th e medica l 'patient ' game b y modernis t rule s withou t question, " wit h "post-colonia l members o f th e remissio n societ y . . . refusin g t o b e reduce d t o 'clinical materia r i n th e constructio n o f th e medica l text , the y ar e claiming voices" (12) . I sugges t tha t anthropolog y examin e th e consequence s o f study ing disabilit y almos t exclusivel y throug h th e len s o f th e dominant , nondisabled majority . Th e majorit y positio n i s likel y t o emphasiz e the benevolent an d enlightene d impulse s tha t guid e prevailing prac105

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tices. Cross-cultura l dat a coul d yiel d significan t informatio n o n commonalities, patterns , an d historica l trend s i n respons e t o dis ability i n th e sam e wa y tha t cross-cultura l informatio n o n wome n has yielde d ric h dat a tha t suppor t understandin g o f pattern s o f male dominance . Medica l anthropology' s rol e i n thi s examinatio n is extremel y important , bu t i t i s th e broade r field o f anthropolog y that mus t locat e disability' s plac e i n th e culture s studied . Last , anthropology need s t o analyz e ho w marginalizin g th e stud y o f disability i n an y environmen t observe d contribute s t o th e margin alization o f disable d peopl e i n thos e cultures , a s wel l a s i n th e culture where th e researc h i s disseminated . History i s anothe r domai n wher e th e lac k o f recognitio n o f disability a s a structurin g elemen t o f a societ y an d wher e th e elevation o f contemporar y Wester n ideal s compromis e th e knowl edge base . A s thos e wh o ar e engage d i n formulatin g socia l histor y have reminde d us , th e remova l o r marginalizatio n o f th e live s an d contributions o f vas t numbe r o f peopl e fro m th e annal s o f histor y has create d a lopside d vie w o f th e past . Hirsc h (1995 ) explain s th e absence o f th e perspective s an d contribution s o f disable d peopl e a s a functio n o f fear , "individua l fea r o f losin g bodil y wort h an d function, an d societa l fea r tha t a large number o f disabled individu als might someho w endange r th e futur e o f the huma n species " (6) . In addition , othe r force s ac t agains t notin g disabilit y a s a n issu e and disable d peopl e a s a constituency . On e i s tha t mos t culture s construct disabilit y a s a n "individua l problem, " whic h work s against viewin g disabilit y throug h th e len s o f history . Whethe r th e culture's tendenc y to individualiz e disabilit y is a result of privilegin g religious explanation s o r medica l explanation s o f disability , bot h result i n reduce d attentio n t o a society' s practice s wit h respec t t o disability. Anothe r proble m i s tha t an y countr y whos e histor y i s being chronicle d ma y mas k disabilit y i n it s populac e i n orde r t o present a n imag e o f a "healthy " state . Fo r instance , i n late-eigh teenth-century France , "bot h th e popula r pres s an d politica l elit e 106

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ushered i n b y th e Revolutio n sa w a direc t paralle l betwee n th e reform o f th e bod y politi c an d th e healt h o f th e physica l bod y o f the Frenc h citizen " (Mirzoef f 1995 , 49). Paul Longmor e (1985b ) make s a convincing argumen t tha t "th e history o f disable d peopl e a s a distinc t minorit y remain s largel y unwritten an d unknown " an d demonstrate s ho w tha t obscurit y ha s compromised understandin g o f figures suc h a s Randolp h Bourn e and thei r contribution s t o histor y (586) . H e urge s "historian s . . . [to] appl y a minorit y grou p analysi s t o th e historica l experienc e o f disabled people " becaus e "whe n devaluatio n an d discriminatio n happen t o on e person , i t i s biography , hu t when , i n al l probability , similar experience s happene d t o millions , i t i s social history " (586) . Hirsch (1995 ) recommend s collectin g ora l historie s o f disable d people a s a mean s t o trac e commonalitie s i n experience . Sh e cau tions, however , tha t thes e ora l histories will no t serv e the purpos e i f they d o no t relat e people' s storie s t o historica l event s o r tim e periods. Pas t interview s hav e serve d onl y t o "reinforc e a notio n o f individual copin g an d persona l adjustments . . . . Thi s kin d o f disaggregation o f th e grou p int o isolate d individual s doe s no t see m to happe n t o othe r group s whos e cultura l connection s an d histori cal significance ar e being portrayed throug h ora l history collections " (9). Further, al l research tha t i s conducted afte r th e fact o n scientific , historical, o r cultura l material s tend s t o impos e contemporar y idea s about disabilit y o n interpretation s o f pas t practices . Thes e studie s are designe d t o mak e sens e of , t o interpret , evidenc e i n a ne w way . For instance , th e theoretica l tool s o f psychoanalysi s hav e bee n applied t o literar y work s an d historica l document s t o produc e psychoanalytic studie s o f th e novel , th e novelist , an d o f historica l figures. Anothe r exampl e migh t b e th e analysi s o f archaeologica l findings fro m variou s disciplinar y perspective s use d t o construc t a picture o f ancient societies . When thes e interpretiv e lense s hav e bee n focuse d o n disability , 107 D I V I D E D CURRICULU M

the studie s rarel y contribut e t o a socia l o r politica l analysi s o f disability. Ther e i s variation , however . Fo r example , differen t re searchers hav e arrive d a t differen t interpretation s o f paleontologica l evidence. Trinkhau s an d Shipma n (1993 ) describ e th e fossi l re mains o f a Neandertha l mal e wh o i s believe d t o hav e sustaine d serious injuries tha t resulte d i n impaire d mobility , partia l blindness , and th e us e o f onl y on e arm . H e live d fo r thirt y t o forty-fiv e years , a lon g lif e span . The author s commen t tha t hi s surviva l was du e t o the "compassion " an d "humanity " o f th e Neanderthals . Stephe n Jay Goul d (1988 ) describe s a n individua l fro m th e Uppe r Paleo lithic perio d whos e remain s indicat e physica l disabilitie s ( a for m o f dwarfism resultin g i n limite d mobility ) tha t woul d hav e restricte d his participatio n i n th e huntin g an d gatherin g activities , an d th e nomadic lif e o f hi s group . Th e ma n wa s burie d i n a cav e tha t appeared t o b e a buria l sit e fo r peopl e o f hig h status . Goul d speculates tha t hi s socia l standin g ma y hav e afforde d hi m thi s honor, o r tha t hi s difference s wer e valued , o r tha t "hi s deed s o r intelligence won respec t despit e hi s physica l handicaps " (18) . Scheer an d Groc e (1988 ) hav e als o reviewe d informatio n o n prehistoric lif e an d critiqu e th e narro w an d stereotypica l interpreta tions o f th e evidenc e generall y foun d i n contemporar y scholarship . They not e tha t i n prehistori c societies , peopl e wit h disabilitie s existed i n greate r number s tha n curren t evidenc e suggests . The y compare interpretation s o f thos e dat a wit h interpretation s o f th e situation o f people with disabilitie s i n contemporar y nonindustrial ized societie s an d refut e som e commonl y hel d assumption s tha t "disabled individual s bor n outsid e th e industrialize d worl d wer e either kille d a t birt h o r die d whe n young " (24) . Althoug h thes e practices di d an d continu e t o occur , ther e i s tremendou s variatio n among the m an d i n th e valu e system s tha t determin e them . Schee r and Groc e not e ho w scholar s i n th e Unite d State s ten d t o glorif y the modern industrialize d nations ' treatmen t o f people with disabil ities, and tha t tendenc y shape s interpretations o f data. Fo r instance , 108

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they quot e Human Evolution, a standar d textboo k o n biologica l anthropology (Birdsel l 1972) : "Biologicall y handicappe d childre n are a humanisti c concer n i n ou r societ y wherea s i n simpl e huma n populations the y die d earl y an d wer e no t missed " (384) . Schee r and Groc e argu e fo r analysi s o f th e socia l constructio n o f disabilit y within a given society , a s well a s analysis o f th e reconstructio n tha t takes plac e i n scholarshi p a s meanin g i s accorde d t o dat a collecte d about tha t society . Nichols (1993) , lookin g no t a t paleontologica l evidenc e bu t at dat a fro m ethnographi c studies , als o comment s o n th e varie d interpretations o f traditiona l societie s tha t exis t i n contemporar y scholarship. H e attempt s i n writin g abou t traditiona l Africa n atti tudes towar d disabilit y t o counterac t th e "observabl e tendenc y t o reduce Africa n idea s abou t disabilit y t o a fe w hackneye d scenario s whereby disabilit y i s see n eithe r a s a resul t o f witchcraft . . . or a s a for m o f divin e retribution " (26) . H e note s tha t moder n industri alized societies tend t o dismiss African idea s as "barbaric" or "primi tive." Instead, h e differentiates betwee n African belie f systems base d on "pragmatic spirituality tha t reflec t [s] knowledg e an d utility , an d blind superstition whic h i s i n bondag e t o ignorance " (Nichols' s italics), i n orde r t o demonstrat e th e huma n an d human e idea s tha t inform man y African approache s t o disabilit y (29). 3 I n focusin g solely o n mystica l interpretations , th e researche r ma y no t onl y bypass th e practica l explanation s o f disabilit y inheren t i n th e cul ture's philosoph y bu t als o ignor e th e society' s practica l responses . Studying traditiona l societies ' mechanism s fo r accommodatin g dis abled peopl e ma y yiel d insight s int o th e positiv e aspect s o f loca l solutions, som e o f which ma y affor d greate r freedo m an d right s t o disabled peopl e tha n thos e availabl e i n societie s wit h a stron g institutional culture . Women's studies , lesbia n an d ga y studies , disabilit y studie s an d a rang e o f othe r ne w scholarshi p hav e challenge d al l th e discipline s to evaluat e th e adequac y o f thei r explanator y powe r i n th e fac e o f 109

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the glarin g omission s tha t hav e recentl y bee n exposed . Eac h socia l science disciplin e need s t o evaluat e th e validit y an d utilit y o f it s field and conside r th e configuratio n o f the socia l science s i n genera l for respondin g t o th e question s raise d b y a disabilit y inquiry . On e way o f conceptualizin g pas t socia l scienc e researc h o n disabilit y i s as a kind o f damage control . Particularly , researc h i n th e predictio n and contro l mod e o f socia l scienc e ha s bee n aime d a t reducin g th e incidence o f disability , reducin g th e impac t o f disabilit y o n th e individual, o r reducin g th e negativ e impac t o f disability o n society . It ma y see m foolis h t o tak e issu e wit h suc h a n agenda . Afte r all, isn't reductio n o f disabilit y everyone' s aim ? Mayb e not . Wha t I find mos t troublin g abou t th e impuls e t o eliminate , cure , o r con tain disabilit y i s th e ascendanc y o f tha t ide a ove r accommodatio n and integration . Th e impuls e t o contro l disabilit y rathe r tha n t o stop oppression i s the theme throughou t th e social science literatur e that i s most problemati c an d mos t i n nee d o f problematizing . HUMANITIES AN D TH E ART S

The stud y o f literature , linguistics , philosophy , art , aesthetic s and literar y criticism, and al l areas of the arts dances around disabil ity but rarel y lights on it . Disabilit y imagery abounds i n th e materi als considered an d produce d i n thes e fields, and ye t becaus e it is not analyzed, i t remains as background, seemingl y of little consequence . Disability, a s perspective, ha s rarel y been employe d t o flush ou t th e hidden themes , images , metaphors , an d problemati c element s o f the fields' guidin g philosophies . As I loo k broadl y acros s th e humanitie s an d th e arts , I se e a n array o f problem s tha t affec t no t onl y wha t w e a s a societ y kno w about disabilit y bu t ho w w e ac t wit h respec t t o disability . I hav e chosen tw o broad , conceptua l error s tha t I se e a s particularl y po tent, i n par t becaus e the y ar e largel y invisible . Thi s i s a startin g point, no t a n exhaustiv e analysis . The first erro r i s th e ide a tha t disable d an d nondisable d peopl e

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have differin g capacitie s an d entitlement s whe n i t come s t o plea sure. Thi s ide a function s i n differen t ways . Disable d people , acros s all disabilit y groups , ar e though t t o hav e compromise d "pleasur e systems." Th e capacit y t o engag e i n pleasurabl e activity—experi ences sought fo r thei r ow n sake , for th e stimulatio n an d enjoymen t they provide—i s assume d t o b e ou t o f reac h o f th e disabled . Al though i t may be recognized tha t disable d peopl e seek such activity , their doin g s o i s conceptualized a s mer e compensatio n fo r th e voi d created b y disability. Thi s notio n i s fed b y deterministic argument s that accor d tremendou s weigh t t o disability , i n effec t sayin g tha t i t eclipses pleasure , joy , and , t o a n extent , creativity . A s a result , disabled peopl e seekin g pleasurabl e experience s ar e though t t o b e searching fo r somethin g t o soothe , t o comfort , o r t o tak e thei r mind of f thei r trouble s rathe r tha n somethin g t o activat e th e imagi nation, heighte n awareness , o r t o spu r themselve s o n t o socia l change. Society's choice , an d I se e i t a s a choice , t o exclud e disable d people fro m socia l an d cultura l event s tha t affor d pleasure , t o den y them se x education , sexua l healt h care , and , a t times , marriage , privacy, an d friendshi p ar e indication s o f th e belie f tha t pleasur e i s less consequentia l t o disable d peopl e tha n t o nondisable d people . Yet tha t belie f i s likely a rationalization fo r mor e virulen t impulses . Are disable d peopl e denie d acces s t o pleasur e b y th e unspoke n notion tha t the y are not entitle d t o i t because they cause displeasur e to others ? Th e bod y o f th e cripple , th e sensor y impairmen t o f th e deaf and blind , th e idiosyncrati c functionin g o f people with menta l illness caus e displeasur e t o thos e accustome d t o disdai n an d dispar age thes e characteristics . Ho w dar e w e crippled , blind , an d craz y folks as k for parity ? Shouldn' t w e b e satisfie d wit h th e provisio n o f medical car e an d sustenance , an d leav e th e luxurie s fo r thos e wh o are thought t o drai n fewe r resource s fro m society ? Although ther e hav e bee n class , gender, race , and ag e analyses o f the wa y societ y structure s acces s t o pleasure , ther e hav e no t bee n ill

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similar disabilit y analyses . As a result inadequat e attentio n ha s bee n given t o th e way s disable d peopl e ar e denie d pleasure , no t b y th e vagaries o f thei r condition s bu t b y th e notio n tha t the y woul d muddy u p frivolity , joy , an d delight , tak e awa y fro m th e purit y o f precious moments . The humanitie s an d th e art s ca n benefi t fro m a n analysi s of wh o in societ y i s believed t o b e entitle d t o pleasur e an d wh o i s though t to hav e th e capacit y t o provid e pleasure . Thes e theme s an d issue s can b e employe d i n analysi s o f ho w character s i n fiction, film, an d theater ar e depicte d a s drainin g pleasur e fro m other s o r ar e them selves compromise d i n thei r abilit y t o experienc e pleasure . Thes e ideas ca n b e use d t o evaluat e th e philosophica l underpinning s o f architectural desig n o r urba n planning , explorin g ho w utilitaria n versus aesthetic consideration s dominat e i n approache s t o accessibl e environments. Philosoph y ca n conside r ho w th e ide a tha t pleasur e is related t o ideal s o f beauty, an d physica l an d psychologica l perfec tion seep s unchecke d int o commonl y hel d belie f systems . Th e potential exist s throughou t th e humanitie s an d th e art s fo r curricu lum t o humanize disability , t o neutraliz e i t and mak e i t less opaque, terrifying, an d alienating . I hav e chose n pleasur e no t s o muc h a s a location fo r wor k tha t need s t o b e don e bu t a s a rout e o r poin t o f departure fo r wor k tha t coul d b e done . Another them e o r issu e tha t th e humanitie s an d art s ca n investi gate i s th e man y way s tha t curricul a an d artisti c product s rende r disability a s powerful an d disable d peopl e a s powerless. The imbal ance i s fe d b y deterministi c argument s tha t plac e disabilit y a s th e overwhelming forc e i n people' s existence . Ther e ar e a numbe r o f ways tha t ou r cultur e portray s disable d peopl e a s victims o f disabil ity, mos t notabl y i n usin g victim t o describ e peopl e wh o hav e particular conditions , suc h a s "Th e woma n i s a victi m o f cerebra l palsy." Th e disabilit y i n thi s depictio n wipe s ou t th e person , th e person's intentionalit y an d potentia l contro l o f he r life . Eve n a semifictional characte r whose behavio r i s shown a s purposeful, suc h 112 DIVIDED CURRICULU M

as Shakespeare' s Richar d III , i s characterize d a s actin g o n hi s un controllable aggressiv e urge s because , a s h e tell s u s i n th e openin g monologue, tha t becaus e h e canno t prove a lover, To entertain thes e fair well-spoken days, I am determined t o prove a villain And hate the idle pleasures of these days. His disability , h e asserts , has rendere d hi m incapabl e o f sexua l an d pleasurable pursuits . He , hi s nephews , an d othe r "victims " suffer a t the hand s o f his ferociou s disability . In som e way s th e them e o f disabilit y a s powerfu l agen t an d th e disabled individua l a s haples s o r helples s victi m ca n b e see n i n th e assignment o f th e stud y o f disabilit y t o th e applie d fields, wit h minor incursion s i n th e socia l scienc e curriculu m an d insignifican t representation i n th e humanities . Disabilit y is , i n thi s configura tion, somethin g t o d o somethin g about , t o contro l an d mak e les s potent, no t somethin g t o understan d an d interpret . Disable d peo ple ar e thos e t o b e provide d for , give n to , an d helped . Readin g th e narrative o f th e curriculu m a s a whole , disabilit y i s somethin g t o take actio n on , no t somethin g t o reflec t on . Yet , althoug h disable d people ar e victims , no t actor s i n th e story , disabilit y itsel f ha s agency, intention , an d power . In considerin g ho w w e ca n redres s thes e conceptua l error s an d the many others still to be articulated, a critical element i s attendin g to th e activ e voice o f th e artist , writer , an d theoris t wit h a persona l disability perspective . Particularl y noteworth y fo r it s absenc e i s th e voice tha t speak s no t o f shame , pain , an d los s bu t o f life , delight , struggle, an d purposefu l action . Writer s ar e neede d wh o ca n dem onstrate tha t succes s i n term s o f disabilit y i s mor e tha n a persona l triumph ove r physica l adversity ; i t i s a life tha t consciousl y reckon s with th e socia l force s tha t oppres s an d control . Th e write r wh o 113

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demonstrates tha t fo r man y disable d people , oppressio n i s no t experienced a s a bodily forc e bu t a political force . Literary criticis m ha s no t don e a ver y goo d jo b o f challengin g the dominan t disabilit y narratives . Analyse s ar e needed , simila r t o those tha t hav e bee n don e o n th e self-loathin g homosexua l figures in th e Boys in the Bandy or o f passive, meek women i n stereotypica l roles. Wher e i s th e critiqu e o f th e achin g narrativ e o f th e blin d man o r o f th e cripple d man , trappe d i n a pitiabl e body , th e bod y he say s ha s betraye d him ? No t onl y hav e thes e character s bee n written o f predominantl y b y nondisable d wome n an d men , thos e same author s don' t als o writ e th e storie s o f disable d peopl e com fortable i n thei r skins , thos e fo r who m disabilit y i s a n integra l bu t not despise d elemen t o f life . Nancy Mair s (1996 ) talk s o f th e nee d fo r voice s i n he r revie w o f Michael Berube' s (1996 ) Life as We Know It: A Father, a Family, and an Exceptional Child an d identifie s Berub e a s on e o f thos e voices: The mediate d pictur e o f disable d lif e i s s o untru e t o tha t life' s realities a s t o encourag e th e vie w tha t peopl e wit h disabilitie s constitute sore s o n th e socia l bod y t o b e eradicate d rathe r tha n the ordinar y wen s an d freckle s t o whic h an y flesh i s heir . T o counteract suc h a vie w require s voices—linguisticall y sophisti cated, intellectuall y nuance d an d politicall y astute—capabl e o f articulating th e issue s raised b y the ful l inclusio n o f people wit h disabilities in society. (30 ) I hav e als o see n i n th e pas t fe w years , a numbe r o f actors , performance artists , poets , an d dancer s wit h a rang e o f disabilitie s who tak e o n thes e issues . The y ofte n us e thei r bodie s o r lif e experiences t o confron t stereotype s an d t o depic t th e peculia r way s that outsiders ' respon d t o disable d people . The y als o represen t experience fro m th e insider' s viewpoin t i n candid , ofte n hilarious , 114

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charged, an d confrontationa l ways. 4 S o ofte n though t b y ou r ver y existence t o transgres s mora l o r aestheti c standards , disable d peopl e in thes e event s purposefull y transgres s socia l standards . Fo r an y significant curricula r o r socia l chang e t o tak e place , radicalizin g voices such a s these will nee d t o b e admitte d int o th e canon . In thi s chapte r I hav e examine d th e limitation s o f th e dominan t curriculum wit h respec t t o th e accurat e representatio n o f disability : the structur e an d conten t o f th e curriculum , an d th e method s o f inquiry employe d eac h contribut e t o misinformation , an d gap s an d weaknesses i n th e knowledg e base . I n it s placemen t o f disabilit y inquiries i n th e specialize d applie d fields, th e curriculu m medi calizes an d individualize s disability . I n restrictin g representatio n o f disability issue s t o pathologize d quadrant s o f th e curriculum , i t reinforces th e ide a tha t disabilit y i s devian t an d undesirable , fo r a n individual o r a society . Disabilit y i s a thin g t o b e avoide d an d contained rathe r tha n a n inevitabl e par t o f lif e tha t ca n b e re sponded t o mor e effectivel y an d positively . Th e absenc e o f mean ingful inquir y i n th e humanitie s compound s thi s problem . Th e curriculum i s devoi d o f th e type s o f interpretativ e researc h an d analyses tha t coul d she d ligh t o n th e preponderanc e o f malignan t and unsavor y imager y i n th e curriculu m an d i n cultura l products . Disability studies , whic h i s examine d i n th e nex t chapter , provide s the mean s t o redres s thes e faults . NOTES

1. I prefe r t o us e th e ter m euthanasia. Th e currentl y popula r ter m physician-assisted suicide i s no t accurat e t o describ e th e death s o f people who ar e vulnerable t o coercio n becaus e of economic necessity, famil y o r socia l pressure , o r disability . I n thos e situations , vulnerable people may be agreeing to death t o satisfy others ' needs, not their own. 2. Gates ' use of deforming in thi s context appear s to me to have more to d o wit h a disassemblin g proces s tha n a disablin g one , an d ye t 115

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images of disabled people as incomplete, not fully formed, o r "disassembled" are important idea s to analyze as well. 3. I t is unfortunate tha t Nichols used blind to modify superstitio n an d to contrast it to pragmatic. This construction reinforce s the idea that blindness indicate s lac k o f knowledge , randomness , an d primitiv e reasoning. 4. A n excellen t sourc e for thi s materia l i s the video "Vita l Signs : Crip Culture Talk s Back " (1996 ) create d b y Sharo n Snyde r an d Davi d Mitchell. I t i s available from Brac e Yourselves Productions, North ern Michigan University, Marquette, Michigan 49855.

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5 ENTER DISABILIT Y STUDIE S

[0]ne group's perspective on knowledge has set the terms of human understanding. Thi s include s ho w bes t t o achiev e knowledg e an d how to distinguish between good and bad knowledge. Sampson 1993 , 1225 [I] f disabled peopl e and thei r knowledg e were fully integrate d int o society, everyone's relation to her/his real body would be liberated. Wendell 1989 , 104

A

s wit h man y o f th e ne w interdisciplinar y fields, creatin g th e category "disabilit y studies " didn' t creat e th e scholarship . Instead, th e nam e organize s an d circumscribe s a knowledg e bas e that explain s th e social an d politica l natur e o f the ascribed category , disability. Th e forma l establishmen t o f th e field provide d a struc ture fo r researc h an d theor y acros s th e discipline s focused o n dis ability a s a socia l phenomenon , a perspectiv e largel y ignore d o r misrepresented i n th e curriculum . The social , political, an d cultura l analyse s undertake n b y disability studie s for m a pris m throug h whic h on e ca n gai n a broade r understanding o f societ y an d huma n experience , an d th e signifi -

cance o f huma n variation . A s Longmor e note d i n a persona l com munication i n 1992 , disabilit y studie s deepen s th e "historica l com prehension o f a broa d rang e o f subjects , fo r instanc e th e histor y o f values an d belief s regardin g huma n nature , gende r an d sexuality ; American notion s o f individualism an d equality , an d th e social an d legal definitio n o f what constitute s a minority group. " A disabilit y studie s perspectiv e add s a critica l dimensio n t o thinking abou t issue s suc h a s autonomy , competence , wholeness , independence/dependence, health , physica l appearance , aesthetics , community, an d notion s o f progres s an d perfection—issue s tha t pervade ever y aspec t o f th e civi c an d pedagogi c culture . The y appear a s theme s i n literature , a s variable s i n socia l an d biologica l science, a s dimension s o f historica l analysis , an d a s criteri a fo r social polic y an d practice . Scholarshi p i n thi s field addresse s suc h fundamental idea s a s wh o i s considere d a burde n an d wh o a re source, who i s expendable an d who i s esteemed, who shoul d engag e in th e activitie s tha t migh t lea d t o reproductio n an d wh o shoul d not, and , i f reproductio n i s no t th e aim , wh o ca n engag e i n eroti c pleasures an d wh o shoul d not. 1 Reference lists , particularl y i n th e pas t fe w years , swee p acros s the disciplines , capturin g an d organizin g wor k fro m seemingl y disparate areas . Th e bod y o f wor k include s author s wh o identif y disability studie s a s thei r are a o f scholarship , an d als o other s wh o are periphera l t o th e field. Fo r example , suc h well-circulate d text s as Susa n Sontag' s (1978 ) Illness as Metaphor, Stephe n Ja y Gould' s (1981) Mismeasure of Man, an d Sande r Gilman' s (1985 ) Difference and Pathology and th e work s o f Thoma s Szasz , Miche l Foucault , and Olive r Sack s hav e serve d a critica l functio n i n th e formulatio n of theory. Yet these authors probabl y d o no t identif y wit h disabilit y studies, and indee d ma y neve r hav e heard o f the field. Another grou p tha t ha s contribute d t o disabilit y studie s scholar ship include s writers i n othe r domain s who hav e deliberatel y incor porated disabilit y i n thei r thinking . Fo r instance , Rut h Hubbard' s 118

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(1990) Politics of Women's Biology investigates disabilit y issue s i n the chapte r "Wh o Shoul d Inhabi t th e World? " whic h look s a t the wa y prejudic e agains t disable d peopl e i s implemente d whe n "scientists an d physician s ar e making th e decision s abou t what live s to target * a s no t wort h living' ' (198) . Sh e believe s tha t th e publi c participates b y accepting , eve n "hail[ing ] a s progres s test s tha t en able u s t o tr y t o avoi d havin g childre n wit h disabilities " (179) . Sh e supports women' s righ t t o terminat e a pregnanc y bu t emphasize s that wome n "mus t als o fee l empowere d no t t o terminat e it , confi dent tha t th e society will do what i t can t o enabl e he r an d he r chil d to live fulfilling lives " (197). Iris Marion Young' s (1990 ) Justice and the Politics of Difference examines ho w theorie s o f social justice omi t discussion o f social-grou p differences , an d grou p difference s i n power an d privilege . Youn g incorporate s ableis m a s on e o f man y perspectives o f the dominan t grou p tha t ha s socia l an d lega l conse quences and describe s its impact o n disable d people . Minow (1990 ) actively incorporates disabilit y issue s in he r examinatio n o f the lega l treatment o f difference . He r wor k contribute s t o a n understandin g of the process of "difference-making" b y shifting th e focus fro m th e "distinctions [made ] betwee n peopl e t o a focus o n th e relationship s within whic h w e notic e an d dra w distinctions " (15) . Christin e Sleeter an d Car l Grant' s (1991 ) stud y o f race , class , gender , an d disability i n textbook s specifie s disabilit y a s a meaningfu l aspec t of diversity , analyze s existin g representations , an d document s it s underrepresentation. But i t is the authors who deliberatel y set out t o plac e ideas abou t disability i n mor e specificall y contingen t relationship s t o th e socia l situation o f disable d peopl e an d t o th e disabilit y right s movemen t who for m th e cor e grou p o f disabilit y studie s scholars . Man y i n this grou p vie w th e establishmen t o f disability studie s a s part o f a n overt agend a t o gai n powe r fo r disable d peopl e throug h organizin g and coalescin g people, resources , an d knowledge .

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GOALS

A goa l righ t no w fo r thi s field i s t o formulate th e epistemologica l foundation for viewin g disabilit y a s a critica l categor y o f analysis , the absenc e o f which weaken s th e knowledg e base . To furthe r tha t process, IV e delineate d fou r area s fo r futur e research . M y ai m her e is t o dra w fro m withi n an d outsid e disabilit y studie s t o poin t th e way towar d a mor e comprehensiv e articulatio n o f disabilit y studie s epistemology tha n ha s previously been undertaken . Increase d atten tion t o thes e four domain s ca n assis t in th e formulatio n o f the idea s that have explanatory and transformational valu e for th e curriculu m as a whole. 1. Theorie s ar e neede d acros s th e curriculu m tha t conceptualiz e disabled an d nondisable d peopl e a s complementary part s of a whole integrated universe . Idea s fro m severa l domain s ca n contribut e t o these formulations . Evely n Fo x Keller' s (1985 ) analysi s o f th e wor k of Barbar a McClintock , a geneticis t bor n a t th e beginnin g o f th e twentieth century , i s a goo d start . Althoug h I don' t believ e tha t McClintock eve r directl y addresse d th e sciences ' constructio n o f disability, he r interes t i n th e exceptiona l cas e i n geneti c researc h and he r respec t fo r individua l differenc e an d complexit y stan d i n contrast t o th e typica l bifurcatio n o f characteristic s o r peopl e int o normal an d abnormal . McClintoc k believe d tha t rathe r tha n dis miss a s aberrant member s o f a specie s tha t stra y fro m th e norm , i t is mor e usefu l t o se e differenc e a s "evidenc e no t o f lawlessnes s o r disorder bu t o f a larger system o f order, on e tha t canno t b e reduce d to a single law" (164) . In a n interview , McClintoc k said , "I f [some thing] doesn' t fit, there' s a reaso n an d yo u find ou t wha t i t is. " Rather tha n overloo k difference, fo r instance , by naming a n anoma lous kerne l o f cor n "a n exception , a n aberration , a contaminant, " she worke d t o understan d it s plac e an d function . Kelle r add s tha t "difference constitute s a principl e fo r orderin g th e worl d radically , unlike th e principl e o f divisio n o r dichotomization . . . . [Whereas] divisio n sever s connectio n an d impose s distance ; th e 120

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recognition o f differenc e provide s a startin g poin t fo r relatednes s . . . " (163) . Tw o article s hav e addresse d application s o f McClin tock's idea s fo r thinkin g abou t disability . I n a piec e I wrot e wit h colleagues (Linton , Mello , an d O'Neil l 1994) , w e poin t ou t ho w McClintock's idea s ca n infor m ethica l debate s relate d t o eliminat ing differenc e throug h th e us e o f prenata l screenin g an d selectiv e abortion, force d sterilization , o r euthanasia . Mino w (1990 ) foun d in th e wor k o f McClintoc k insight s fo r he r stud y o n conception s of differenc e i n th e America n lega l system . Mino w comment s o n McClintock's "attentio n t o relationship s betwee n part s an d whole s and betwee n th e observe r an d th e observed " (202) . Thes e idea s ar e useful, no t t o attemp t t o eras e differenc e bu t t o loo k a t th e conse quences o f the way difference i s understood an d acte d upon . The ke y t o th e formulatio n o f theor y i s t o examine , a s McClin tock did , th e complementarit y an d interdependenc e o f part s t o wholes. This involve s recognitio n o f disabled an d nondisable d peo ple a s distinc t groups , th e relationshi p o f on e t o th e other , an d o f both t o th e socia l structure s i n whic h the y function . 2. Disabilit y studie s need s t o articulat e how an d i n what area s o f theory centerin g disabilit y perspective s ca n b e advantageou s fo r knowledge developmen t i n al l conten t areas . McCag g an d Siegelbaum (1989 ) tak e o n a piec e o f thi s projec t i n thei r stud y o f the disable d i n th e Sovie t Union , i n whic h the y conside r way s tha t the "fat e o f th e disable d . . . provides clue s t o th e inne r direction s of moder n society " (3) . The y explai n tha t th e "fat e o f th e disable d [has] thi s weathe r van e characte r . . . [because ] societie s alway s reveal themselve s throug h thei r treatmen t o f th e helples s amon g their ow n populations. " Their effor t t o cente r disabilit y a s a pivota l point o f analysi s i s worthwhil e bu t fall s shor t becaus e the y believ e disabled people' s oppressio n come s fro m "th e conditions natur e ha s imposed o n them " (6 ) rathe r tha n fro m th e socioeconomic , politi cal, an d cultura l oppressio n tha t othe r marginalize d group s experi ence. I f the y wer e t o ste p furthe r bac k fro m thi s pictur e t o revea l 121 ENTER D I S A B I L I T Y STUDIE S

the "weathe r van e character " o f th e manne r i n whic h societie s create helplessnes s an d dependency , i t would yiel d a mor e produc tive analysis . Fo r instance , rathe r tha n assum e tha t disable d peopl e are th e mos t vulnerabl e amon g us , wh y no t conside r th e mecha nisms tha t a societ y use s t o mak e disable d peopl e economicall y vulnerable, powerless , an d isolated , an d conside r wha t th e us e o f those mechanism s say s about a society. Gilma n (1985 ) doe s dra w a distinction, parenthetically , betwee n tw o type s o f vulnerabilit y when h e comments tha t medicine' s "peculia r powe r lie s not onl y i n its statu s a s scienc e bu t i n th e over t helplessnes s o f th e individua l in th e fac e o f illness (o r i n th e fac e o f being labelle d ill) " (28) . Two othe r work s tak e a somewhat differen t approac h t o center ing disabilit y perspectives. Radfor d (1994) , i n "Intellectua l Disabil ity an d th e Heritag e o f Modernity, " explain s tha t "modernit y i s a lens throug h whic h w e ca n se e tha t ou r cultur e ha s no t onl y marginalized peopl e wit h a n intellectua l disability , it has also marginalized the study of intellectual disability as a phenomenon (22 ; Radford's emphasis) . H e explain s th e way s tha t th e universit y an d the broade r force s o f modernit y i n th e nineteent h an d twentiet h centuries create d th e categor y o f "menta l deficiency " an d th e asy lums i n whic h peopl e s o identifie d wer e housed . H e i s mor e suc cessful i n explainin g ho w th e lens o f modernity shape s understand ing o f disabilit y tha n h e i s i n demonstratin g ho w a disabilit y perspective migh t enric h ou r understandin g o f modernism . Morri s (1991), i n The Culture of Pain, come s a bi t close r whe n h e trace s the medica l establishment' s clai m t o th e territor y o f understandin g and respondin g t o huma n pain . "Th e medicalizatio n o f pai n i s indeed s o characteristic o f our tim e tha t historian s seekin g a date t o mark th e adven t o f modernis m migh t d o fa r wors e tha n selec t 1899, whe n salicyli c aci d wa s first commerciall y develope d int o . . . aspirin " (59-60) . Althoug h Radne r i s mor e awar e o f th e meaning o f thes e idea s fo r th e socia l situatio n o f disable d peopl e than eithe r Morris , o r McCag g an d Siegelbaum , Morri s recognize s 122

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how th e medicalizatio n o f pain , an d b y inferenc e I woul d ad d conditions involvin g pain , hav e shape d modernism . Althoug h I don't thin k i t i s useful t o equat e disabilit y with pai n o r with illnes s because thes e connection s ofte n hav e littl e validit y i n eithe r a medical o r socia l sense , I includ e thes e example s her e becaus e I think Morri s ha s bee n s o successfu l a t centerin g pai n an d interpre ting i t a s a cultura l phenomenon . He , an d Zborowsk i (1960 ) an d others before him , hav e take n somethin g usuall y though t t o b e a distinctly biologica l event—pain—an d demonstrate d ho w i t ca n b e better understoo d employin g th e tool s o f literar y criticism , histori cal analysis, anthropologica l investigation , o r philosophica l inquiry . A simila r analysi s o f disability migh t begi n wit h Morris' s statemen t that i f a pil l wer e invente d "guaranteein g life-tim e immunit y fro m pain, we would a t once have to se t about reinventin g what i t mean s to b e human" (20) . Together, thes e thre e essays point towar d formulation s tha t cen ter disabilit y perspective s i n a comprehensiv e wa y an d enric h un derstanding o f both disabilit y and , i n thi s example , modernity . 3. Althoug h traditionall y th e stud y o f disability ha s bee n house d predominantly i n th e applie d fields, th e vas t majorit y o f work tha t explains an d elaborate s o n th e social-politica l paradigm s i s no t found i n tha t knowledg e base . Therefore, fo r a numbe r o f reasons , the propose d comprehensiv e disabilit y studie s epistemolog y shoul d be grounde d i n th e humanitie s an d socia l sciences , an d reflec t th e interdisciplinary natur e o f the field. There ar e a t leas t thre e benefit s o f suc h a formulation . On e i s that a t this juncture i t is important t o distinguish betwee n disabilit y studies pe r s e an d th e typica l stud y o f disabilit y foun d i n th e applied fields. The latte r group, aimed a t intervention, remediation , care, an d cure , dominate s thinkin g abou t disabilit y an d interfere s with a n understandin g o f social an d politica l phenomena . A secon d benefi t i s tha t importan t disability-relate d practice s taught in the applied fields are not grounded in a coherent theoretica l 123

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rationale (Linto n 1994) . For instance , curren t debate s ove r separat e (special education ) versu s integrate d (inclusive ) educatio n ar e base d more o n predicte d outcome s o r o n pragmati c consideration s tha n they ar e o n legal , moral , historical , o r psychologica l theory . Skrti c (1992) comment s tha t th e debate s ove r differen t model s o f integra ting educatio n "ar e form s o f naive pragmatism, a mod e o f analysi s and proble m resolutio n tha t i s premise d o n a n unreflectiv e accep tance o f th e assumption s tha t li e behin d socia l practices"(205 ; Skrtic's emphasis) . Separat e educatio n system s ar e based o n th e no tion tha t ther e i s a logical divid e betwee n disable d an d nondisable d people, an d tha t eac h group' s educationa l need s follo w fro m thei r diagnosis a s nondisabled o r disabled . Th e ac t of dividing i n tw o th e entire group o f school-age children an d segregatin g on e set from th e other i s rarely argued o n theoretica l ground s and must b e justified a s an expedient respons e to a difficult situation . Consider a relate d example . Ev e Kosofsk y Sedgwick' s (1990 ) stated ai m i n Epistemology of the Closet was no t t o argu e a particula r side i n th e debate s ove r homosexua l an d heterosexua l definitiona l issues bu t t o direc t attentio n t o th e absenc e o f a theoretica l ratio nale fo r th e creatio n o f th e binar y categorie s homosexua l an d heterosexual. "Th e purpos e o f thi s boo k i s no t t o adjudicat e be tween th e tw o pole s o f either o f thes e contradictions , for , i f its [th e book's] argumen t i s right, n o epistemologica l groundin g no w exist s from whic h t o d o so " (2) . Similarly , disabilit y studie s need s t o build th e epistemolog y o f ou r closets , ou r institutions , sheltere d workshops, an d "special " schools , an d i t mus t critiqu e wea k argu ments fo r a bifurcate d society . I recognize , an d hav e state d i n a number o f way s here , tha t disable d peopl e ar e emphasizin g th e distinction betwee n nondisable d an d disable d peopl e fo r th e pur pose o f unifyin g a previousl y fragmente d grou p an d identifyin g phenomena largel y hidde n b y tha t fragmentation . Markin g th e border i s a strategic endeavor no t t o separate th e tw o groups furthe r but t o illuminat e th e line s tha t currentl y divid e them . 124

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A thir d benefi t o f emphasizin g th e libera l art s i n formulatin g disability studie s epistemolog y i s tha t wit h increase d integratio n o f disabled peopl e i n societ y an d wide r recognitio n o f disability right s issues, th e type s o f blatan t contro l tha t existe d i n a n er a o f institu tionalization hav e been replace d b y subtler form s o f oppression an d alienation. Th e examinatio n o f "th e everyda y habit s an d cultura l meanings o f whic h peopl e ar e fo r th e mos t par t unaware " (Youn g 1990, 124 ) coul d b e a stron g sui t o f course s i n th e humanities . Although th e socia l science s an d th e applie d fields hav e se t th e terms fo r th e discours e o f deviance , pathology , an d normalcy , an d have don e littl e t o challeng e thos e constructs , representation s o f disability appearin g throughou t th e humanitie s deepe n th e divid e between disable d an d nondisable d peopl e an d ar e similarly ignored . Ultimately, disabilit y studie s ca n b e most effectiv e a s an interdis ciplinary field tha t ca n brin g multipl e perspective s t o bea r o n th e phenomenon o f disabilit y an d ca n presen t disabilit y a s a n organiz ing principl e use d t o formulat e questions , hypotheses , an d a coher ent knowledg e base . As I note d i n th e introductio n whe n catalogu ing th e limitation s o f m y ow n field o f psycholog y a s a bas e fro m which t o generat e scholarshi p o n disability , th e question s tha t nee d to b e addresse d requir e ne w paradigm s an d a readin g acros s th e disciplines t o rende r a mor e accurate , cohesive , an d comprehensiv e picture o f disability . 4. A fourth domain—relate d t o th e third—that disabilit y studie s scholars hav e attende d t o i s the vas t real m o f meaning-making tha t occurs i n metaphori c an d symboli c use s of disability. Thes e device s need t o b e analyze d i n a n arra y o f cultura l product s t o understan d their meaning s an d functions , an d t o subver t thei r power . A n impressive an d rapidl y growin g bod y o f wor k ha s take n o n thi s task, an d i t i s amon g th e mos t usefu l an d poten t tool s w e ca n us e to unvei l attitude s towar d disabilit y (Thomso n 1997 ; Davi s 1995) . Metaphors relate d t o disabilit y ar e powerfu l tool s o f persuasion . "[P]erhaps th e onl y defens e agains t bein g victimize d b y metapho r 125

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is sophistication" (Kliebar d 1992 , 210). Susan Sonta g (1978 ) raise d our leve l o f sophisticatio n i n Illness as Metaphor, i n whic h sh e attempted t o separat e th e essentia l fro m th e nonessentia l aspect s o f illness, and , b y inference , disability . He r purpos e i s t o liberat e ou r thinking fro m th e "punitiv e o r sentimenta l fantasie s concocte d about illness " (3) . Kriege l (1982) , i n a discussion o f Sontag's work , notes tha t "diseas e has becom e s o all-embracing a metaphor tha t it s actual physica l consequence s hav e bee n swallowe d u p b y th e welte r of moralisti c judgment s i t call s forth " (17) . Neithe r Sonta g no r Kriegel, however , ha s site d thes e interpretation s i n th e contex t of disabilit y politics , a natura l avenu e fo r a n exploratio n o f th e consequences o f thes e metaphor s fo r th e live d experienc e o f peopl e so labeled . Similarly , Thomso n (1994 ) note s i n a n articl e o n femi nist disabilit y studie s tha t i n tw o book s tha t contribut e t o a n understanding o f tha t domain , althoug h no t describe d b y th e au thors a s disabilit y studies , Herndl' s (1993 ) Invalid Women an d Huet's (1993 ) Monstrous Imagination, "disabilit y itsel f is not politi cized i n eithe r book " (589) . Ye t Herndl , fo r instance , "examine s the dialectica l relationshi p betwee n th e fac t o f invalidis m an d th e figure o f th e invali d [so ] freighte d wit h cultura l meaning " and , i n doing so , "provide s th e sourc e fo r a cultura l figure tha t a t onc e embodies. . . the contradictor y discourse s o f womanhood i n nine teenth centur y America " (590) . I n othe r words , a numbe r o f au thors engag e i n a n incomplet e versio n o f disabilit y studies , on e devoid o f a social an d politica l analysi s o f disability . The metaphor s tha t allud e t o disabilit y o r invok e disabilit y imagery ar e everywhere , an d th e idea s the y ar e base d o n ar e ac cepted s o casuall y tha t w e will hav e a har d tim e dissuadin g peopl e from usin g them . A n example , s o subtl e an d s o unexpecte d tha t i t may sli p unchecke d int o you r thinking , come s fro m Transforming Knowledge, Elizabeth Kamarc k Minnich' s (1990 ) excellen t boo k o n curriculum transformation . I t i s a passage from Ann a Julia Cooper' s

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Voice from the South, writte n mor e tha n on e hundre d year s ago , i n 1892: It i s not th e intelligen t woma n vs . the ignoran t woma n no r th e white woma n vs . th e black , th e brown , an d th e red , i t i s no t even th e caus e o f woma n vs . man . Nay , 'ti s woman' s stronges t vindication fo r speakin g tha t the world needs to hear her voice. . . . Th e worl d ha s ha d t o lim p alon g wit h th e wobblin g gai t and th e one-side d hesitanc y o f a ma n wit h on e eye . Suddenl y the bandag e i s removed fro m th e othe r ey e and th e whole bod y is filled with light . I t see s a circle where befor e i t saw a segment. The darkened ey e restored, ever y member rejoice s with it . (Fron tispiece; emphasis i n original ) This i s certainl y a vivi d passage . Yet , it s utilit y i n thi s contex t rests o n th e belie f tha t someon e wit h th e us e o f on e ey e perceive s only a segment o f the world, i s unsteady, hesitant , an d function s i n a bod y filled wit h darkness . Th e parallel s draw n betwee n silence d women an d disable d man , an d the n betwee n wome n give n a voice and a man wh o i s "cured" appea r t o b e as meaningful toda y as the y were i n 1892 . The dilemm a no w fo r thos e who advocat e curricula r transformation, i s t o find way s no t onl y t o giv e voic e t o silence d women bu t t o giv e voic e t o peopl e wit h impaire d vision . Th e benefit woul d b e th e increase d abilit y t o se e thi s man , an d othe r "uncured" huma n beings , a s whole, purposeful , sentien t people . I f he remain s a metaphor , hi s experienc e i s define d onl y b y implie d comparison t o unsteadiness , darkness , limite d vision , sadness , in eptness, th e absenc e o f ligh t an d enlightenment , an d an y numbe r of othe r substitution s fo r th e rea l experienc e o f wome n an d me n with disabilities. 2 What i s foregrounde d her e i s assume d t o b e charge d an d redo lent wit h meaning , th e backgroun d neutral , usefu l a s a devic e t o emphasize th e point . Bu t I se e th e backgroun d a s problematic ,

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meaningful i n it s ow n right . I t scream s t o b e looke d at . Th e representation reduce s th e ma n wit h a disabilit y t o a metapho r fo r inadequacy an d thi s ha s consequence s fo r disable d people . An d because we ar e seein g with onl y a portion o f ou r population , i t ha s consequences fo r everyone . Courses i n literature , literar y criticism , rhetoric , o r philosoph y can investigat e thes e metaphors an d othe r device s tha t see m appeal ing becaus e the y effectivel y evok e feeling s o r image s tha t man y ar e thought t o share . Yet , thes e figures o f speec h furthe r objectif y an d alienate peopl e wit h disabilitie s an d perpetuat e inaccurat e informa tion abou t disable d people' s experience . Consider , fo r instance , th e accuracy o f th e idea s perpetuate d i n th e passag e above . Ther e i s probably n o reaso n tha t a one-eyed perso n woul d se e only par t o f a circle, an d n o reaso n t o believ e tha t someon e wit h partia l sigh t would, necessarily , stumble . Dept h perceptio n i s ofte n affecte d b y sight i n on e eye , bu t peopl e usuall y lear n t o accommodat e t o tha t change an d adjus t th e way they walk . Critical analysi s i s also neede d o f characters wit h disabilitie s an d the function s the y serv e i n fiction, film, an d drama . Fo r instance , renditions o f character s suc h a s Richar d th e Third , Laur a Wing field, Lor d Chatterly , o r Dr . Strangelov e hav e a powerfu l impac t on ou r thinkin g abou t disability . A numbe r o f author s workin g i n this are a hav e done excitin g research . Norden' s (1994 ) comprehen sive study , The Cinema of Isolation: A History of Physical Disability in the Movies, examine s character s wit h disabilities , disability-re lated theme s an d image s that functio n a s plot device s or metaphors , as well a s forma l mechanism s suc h a s camer a angles , framing , an d editing t o demonstrat e ho w "mos t movie s hav e tende d t o isolat e disabled character s fro m thei r able-bodie d peer s a s wel l a s fro m each other " (1) . Thomson's (1990 ) articl e o n th e representatio n o f disability a s stigm a i n th e novel s o f Ton i Morriso n prompte d on e of m y student s t o comment : 'Tv e rea d al l th e novel s b y Morriso n that sh e mention s an d I mus t no w g o bac k an d rea d the m al l 128 ENTER D I S A B I L I T Y STUDIE S

again." Th e student , wh o i s a graduat e studen t i n a rehabilitatio n program an d work s wit h peopl e wit h disabilities , ha d no t reall y noticed th e disabled characters an d ha d certainl y misse d th e patter n that Thomso n trace s o f Morrison' s nonstereotypica l depictio n o f disabled character s a s vibrant, purposeful , an d ofte n stron g women . Thomson finds tha t i n Morrison' s hands , "physicall y disable d o r anomalous blac k wome n triumph " an d th e novel s "repudiat e stig matization itself " (240) . Othe r contribution s includ e Krieger s (1969) "Uncl e To m an d Tin y Tim : Som e Reflection s o n th e Cripple a s Negro" ; Kent' s (1988 ) essa y "I n Searc h o f a Heroine : Images o f Wome n wit h Disabilitie s i n Fictio n an d Drama" ; an d Zola's (1987 ) "Th e Portraya l o f Disabilit y i n th e Crim e Myster y Genre." It i s importan t no w t o mov e towar d th e establishmen t o f a cohesive theoretica l framewor k fo r thi s material . Further , w e nee d to trac e pattern s i n th e us e o f metaphor s an d i n symboli c use s o f disability t o determin e wher e an d ho w the y emerge , an d ho w the y function i n variou s genres, cultures , an d historica l periods . Gender , race, an d clas s analyse s o f thes e representation s shoul d b e integra l to thi s endeavor . The abov e fou r area s ar e wha t see m t o m e t o b e mos t pressin g a s we forg e a n epistemolog y o f relevanc e t o th e broade r academi c community. Th e first, creatin g theorie s tha t conceptualiz e disable d and nondisable d peopl e as integral, complementary part s of a whol e universe, shoul d conside r th e historica l an d cross-cultura l researc h on practice s tha t divid e communitie s alon g disabilit y lines , a s wel l as thos e tha t unit e peopl e an d promot e equity . Thos e practice s ar e gender-, class- , an d race-specific , an d theor y shoul d no t b e naiv e with respec t t o th e complexit y o f thes e interactions . Th e second , developing a cohesiv e knowledg e bas e tha t position s disabilit y a s the centra l vecto r o f analysis, is a creative enterpris e tha t shoul d se e no boundarie s t o th e productio n o f th e ide a o f "disability. " Th e 129

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third, groundin g disabilit y i n th e humanitie s an d socia l science s and renderin g a n interdisciplinar y field, i s essentia l t o addres s th e unanswered question s or , eve n mor e fundamentally , t o formulat e questions unimaginabl e fro m ou r presen t constricte d knowledg e base. Th e las t enterpris e i s t o min e th e canon s fo r th e malignant , unsavory, o r simpl y reductiv e representation s o f disabilit y tha t in sinuate themselve s int o ou r thinking . Metapho r i s no t merel y a n "ornament t o speec h an d writin g irrelevan t t o th e tas k o f clarifyin g and conveyin g meaning, " i t i s a "fundamenta l vehicl e o f huma n thought" (Kliebar d 1992 , 206) and , a s such, ha s a profound impac t on thinkin g abou t peopl e with disabilities . We shoul d als o attemp t to dissuad e author s fro m utilizin g disabilit y i n thi s wa y i n futur e writing—possibly b y demonstrating ho w thes e metaphors ar e ofte n used reflexivel y t o trigge r a reactio n rathe r tha n t o illustrat e o r explain a n idea . Whatever renovation s ar e performe d o n th e curriculu m t o de velop disabilit y studie s an d integrat e i t int o th e curriculum , thes e actions are not takin g place in isolation . The quotation s tha t appea r at th e openin g o f chapte r 1 demonstrate m y belie f i n th e dynami c interaction betwee n th e civi c an d pedagogi c cultures . Kliebard' s belief tha t th e curriculu m i s a manifes t expressio n o f th e cultura l values is coupled with M innich's statemen t tha t educationa l institu tions ar e th e shaper s an d guardian s o f cultura l memor y an d henc e of cultura l meanings . A s currentl y rendered , th e knowledg e w e generate i n th e academ y an d disseminat e t o student s perpetuate s a society i n whic h disable d peopl e ar e ofte n cas t a s other , margin alized, an d denie d civi l right s an d economi c opportunity ; relegate d to segregate d an d inferio r education ; an d restricte d i n thei r oppor tunities fo r pleasure , socia l an d sexua l interaction , parenting , mar riage, religiou s expression , an d freedo m o f movement . As the inquir y move s furthe r int o th e academy , ther e i s a dange r that i t ma y los e som e o f it s potential t o chang e academi c an d civi c practices. Shumwa y an d Messer-Davido w (1991 ) rais e a simila r 130 ENTER D I S A B I L I T Y STUDIE S

concern abou t separatin g feminis t inquir y an d activism . I n thei r article o n disciplinarit y the y ask : "I f th e movemen t i s n o longe r the contex t fo r knowledge-production , man y no w wonder , wil l feminism b e abl e t o remai n a transformationa l project? " (216) . Disability studie s should sta y tethered t o th e disability right s move ment fro m whic h i t wa s bor n an d shoul d remai n committe d t o serving not onl y knowledge productio n bu t civi l rights , justice, an d equity. NOTES

1. Som e o f the materia l fro m thi s passag e originally appeared i n Lin ton, Mello , an d O'Neil l (1994) . Joh n O'Neil l an d Susa n Mell o contributed a great deal to this interpretation . 2. Elizabet h Minnich and I have been engaged in an ongoing dialogue about some of the issues I raise in this analysis. It has been wonderful t o "think out loud" with her, and her insights have enriched my thinking on this passage.

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6 DISABILITY STUDIES / NOT DISABILIT Y STUDIE S

T

he borde r betwee n wha t i s considere d disabilit y studie s an d what i s no t i s fixed a t differen t point s b y differen t author s and researchers . Althoug h i t i s unlikel y tha t anyon e woul d sugges t that ther e b e a n absolut e boundary , effort s t o circumscrib e th e domain an d t o anticipat e th e consequences o f limitless permeabilit y across th e border s ar e worthwhile. I n thi s chapter , I a m concerne d with providin g a coheren t rational e fo r markin g a border , settin g off disabilit y studie s a s a socio-political-cultura l examinatio n o f disability fro m th e interventionis t approache s tha t characteriz e th e dominant tradition s i n th e stud y o f disability . The field o f disabilit y studie s arose , i n part , a s counterpoin t t o

the medicalize d perspective s o n disabilit y emanatin g fro m th e ap plied fields, an d i n respons e t o th e marginalizatio n an d distortion s apparent acros s th e curriculum . I n on e sense , th e developmen t o f disability studie s i s a remedia l endeavor , redressin g th e sin s o f omission an d commissio n i n th e canon . Yet , i n a significan t way , disability studie s move s beyon d th e corrective . I t i s th e socio political-cultural mode l o f disabilit y incarnate . I t provide s a n epis temological basi s fo r inquirie s an d action s tha t coul d no t hav e been imagine d fro m th e restrictiv e threshold s o f th e traditiona l curriculum. It i s timel y t o mar k thi s borde r becaus e th e nam e "Disabilit y Studies" ha s begu n t o cro p u p aroun d th e Unite d State s an d Great Britai n t o describ e graduat e an d undergraduat e program s i n everything fro m th e trainin g o f healt h car e worker s an d occupa tional therapist s t o course s i n literar y criticis m examinin g represen tation an d metaphor . Th e healt h an d occupationa l therap y pro grams' appropriatio n o f "Disabilit y Studies " compromise s th e integrity o f a field designed t o explicat e disabilit y a s a social, politi cal, an d cultura l phenomenon . I n thi s chapter , I a m labelin g thos e applied approache s th e "No t Disabilit y Studies. " Fo r reason s t o b e described here , I name the m a s such no t t o denigrat e thei r functio n but t o explai n ho w th e appropriatio n o f th e ter m compromise s th e validity an d utilit y o f a separate libera l arts-base d inquiry . FAULTS AN D FAULT LINE S

In considerin g her e ho w w e migh t effectivel y an d validl y delineat e disability studies , I' d lik e t o begi n b y outlinin g th e limitation s o r problems i n th e dominan t o r traditiona l curriculum' s presentatio n of disability . Followin g i s a list o f th e fault s an d faul t lines , tha t is , the mor e clearl y observable misrepresentations , a s well a s the cover t problems i n th e academic curriculu m tha t determin e ho w disabilit y is studied. The y are presented a s motivating force s fo r th e establish ment o f a discrete field o f disability studies , grounde d i n th e libera l 133

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arts an d se t apar t fro m th e applie d fields. Eac h i s then examine d t o determine ho w bes t t o redres s i t throug h th e developmen t o f dis ability studies . 1. Th e curren t presentatio n o f disability, predominantl y i n reha bilitation an d i n specia l education , individualize s disability — the curriculu m foster s th e ide a tha t disabilit y i s the individu al's o r a t mos t th e family' s problem . Further , th e curriculu m treats disabilit y as an isolabl e phenomenon, an d idea s about i t relate only to i t an d t o people who hav e particular conditions . 2. Th e constructio n o f disabilit y as , perforce , a proble m inter feres wit h it s bein g viewed a s an issue , a n idea , a metaphor, a phenomenon, a culture, an d a construction . 3. Th e absenc e o f subjectivit y an d agenc y o f disable d peopl e i s evident i n a revie w o f standar d curricul a i n history , psychol ogy, women' s studies , literature , philosophy , anthropology , and o n an d on . Moreover , th e proble m i s compounde d b y the absenc e o f disable d people' s perspective s i n th e genera l culture. 4. Th e objectificatio n o f disable d peopl e i n scholarship , whic h in par t i s a consequence o f the absenc e o f subjectivity an d th e active voic e o f disable d researchers , bu t i s als o mad e possibl e by the dominanc e o f empiricism i n th e study o f disability; th e large numbe r o f stereotype s an d simplifie d version s o f disa bled people' s experienc e presente d acros s th e disciplines ; th e absence o f critica l analysis ; th e pathologizin g o f experience ; and th e us e o f diagnosti c categorie s o r othe r mean s o f label ing. 5. Acros s th e curriculum i n th e social sciences and i n th e applie d fields, essentialis t an d deterministi c explanation s o f disabilit y abound. 6. A s a result of the medicalizatio n o f disability i n th e traditiona l canon, ther e occur s a pathologizing o f difference; th e individ 134 D I S A B I L I T Y S T U D I E S / N O T D I S A B I L I T Y STUDIE S

ualization o f disabilit y (se e ite m 1 , above) ; a los s o f self definition an d self-determination ; an d a forced assignmen t o f the role s o f patient , client , an d consumer . Relate d t o thi s i s the conflatio n o f impairmen t an d disability—lac k o f recogni tion tha t impairmen t an d disabilit y shoul d b e addresse d pre dominantly i n separat e realm s o f discourse . 7. A n overemphasi s o n interventio n a t th e individua l level , wha t Trickett, Watts , an d Birma n (1994 ) hav e spoke n o f a s "per son-fixing rathe r tha n context-changing " (18) . 8. Th e preponderanc e o f information o n disabilit y i n th e curric ula o f th e applie d fields effectivel y sequester s th e stud y o f disability i n thos e fields, whic h dea l wit h narro w band s o f content an d brin g t o bea r a restricte d rang e o f methodolog y on thei r subjects . 9. Withi n th e applie d fields, ther e i s inadequate attentio n t o th e interventions an d t o th e medica l an d educationa l solution s that th e disable d communit y ha s asked for . 10. Th e marginalizatio n o f th e stud y o f disability i n th e humani ties and i n th e libera l art s i n general . 11. Insufficien t attentio n t o disable d peopl e a s minorit y grou p and th e cultural , political , an d intellectua l meaning s o f tha t status. Further , diversit y initiative s an d multicultura l curricu lum endeavor s have , fo r th e mos t part , ignore d disabilit y a s a category o f analysis. 12. An d last , th e curriculu m i s missin g wha t I cal l a n epistemol ogy o f inclusion . Ther e doe s no t exis t a broad-base d bod y o f knowledge, a n intellectua l rational e fo r th e incorporatio n o f disabled peopl e a s full an d equa l member s o f society. WHAT I S NEEDE D

Given thes e problems , wha t i s th e mos t logica l organizatio n o f th e study o f disability i n th e academy ? There shoul d b e a well-developed , interdisciplinar y field o f in 135 D I S A B I L I T Y S T U D I E S / N O T D I S A B I L I T Y STUDIE S

quiry, grounde d i n th e libera l art s an d calle d disabilit y studies , designed t o stud y disabilit y a s a social , political , an d cultura l phe nomenon. Separate fro m a n establishe d disabilit y studies , th e applie d fields should develo p mor e valid an d usefu l approache s t o th e presenc e o f impairment i n th e population an d disabilit y i n society, and respon d to disable d peopl e i n a les s deterministi c an d mor e integrate d wa y than heretofore . Although thei r focu s i s on individua l interventions , research an d curricul a shoul d examin e carefull y th e contextua l vari ables tha t shap e experience . Arokiasam y (1993 ) state s tha t "th e ultimate purpos e o f rehabilitatio n i s th e achievemen t o f individua l autonomy b y th e clien t . . . [and ] i n it s pursui t o f thi s purpose , rehabilitation shoul d us e a holisti c approac h t o treatmen t . . . including th e social, economic, political , cultural, an d lega l context s in which peopl e with disabilitie s find themselves " (81) . These revise d applie d approache s shoul d b e informe d b y th e intellectual tradition s inheren t i n disabilit y studies an d b y the polit ical commitment s adhere d t o b y th e disabilit y right s movement . Teaching i n th e applie d fields shoul d suppor t inclusion , self-deter mination, an d self-definition . Base d o n thos e tenet s an d informe d by curren t researc h i n educatio n tha t support s inclusion , th e pro grams shoul d b e revise d s o a s t o prepar e professional s t o wor k i n integrated settings . I advocate th e reconfiguring o f special educatio n and rehabilitation , whic h hav e traditionall y overdetermine d disabil ity a s an explanator y variabl e an d whic h prepar e peopl e t o wor k i n segregated settings , exclusivel y wit h disable d people . However , n o matter whic h revision s ar e made , th e curriculu m an d bod y o f research tha t support s interventio n shoul d remai n i n th e categor y "Not Disabilit y Studies. " For reason s elaborated below , th e mainte nance o f tw o separat e domain s ha s bot h intellectua l an d politica l significance.

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RATIONALE

Let's return no w to th e list of problems with th e traditiona l curricu lum an d conside r th e validity an d utilit y o f differentiatin g betwee n disability studie s an d "no t disabilit y studies. " Obviously , th e ap plied approaches nee d a new name or multipl e names . I am namin g the no t disabilit y studie s a s th e nul l hypothesis , no t becaus e i t i s devoid o f substance bu t becaus e i t remain s no t full y articulate d a s a distinct field. Specia l education, rehabilitation , an d othe r disability related fields were an d remai n mor e clearl y a reaction t o social nee d than fields determine d b y a se t o f principle s an d ideas . Althoug h social need i s a reasonable basi s for developin g curricula, th e perpet uation o f thes e fields need s t o b e reevaluate d i n ligh t o f curren t research an d socia l imperatives . Arokiasamy (1993) , writin g o n th e need fo r a theoretical basi s for rehabilitation , note s tha t "rehabilita tion a s a profession an d a s a specific field . . . emerged largel y ou t of legislativ e mandat e . . . an d i n respons e t o a serie s o f practica l needs . . . [which ] ha s contribute d t o makin g rehabilitatio n a pragmatic, technique-drive n professio n withou t a sound theoretica l base" (77) . Th e medicalize d fields, suc h a s rehabilitatio n an d eve n special education , whic h adop t th e organizatio n o f knowledge use d in medicine , hav e historicall y presume d dominio n ove r al l knowl edge o n disability . Therefore , fo r th e purpose s o f thi s book , i t i s useful t o cente r th e disabilit y studies model , fro m whic h standpoin t the remainin g stud y o f disability i s peripheral. Recall tha t proble m 1 is the individualization of disability. Main taining th e distinctio n betwee n disabilit y studie s an d applie d ap proaches underscore s tha t individua l response s ar e appropriat e fo r impairment bu t ar e misdirected fo r disability . The individualizatio n of disability , althoug h logica l i n th e applie d fields, ha s spille d ove r into al l other curricul a o n disability . Recall, also , proble m 2 , disability as a problem. Peopl e wit h disabilities hav e problems , an d thos e ma y b e addresse d b y individ ual interventions , bu t maintainin g a separat e libera l arts-base d 137

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disability studie s woul d reinforc e th e ide a tha t societ y create s man y of th e problem s disable d peopl e experience , an d societ y ha s a responsibility t o addres s them . There are , o f course , problem s tha t ar e a direct resul t o f impair ment; pain , suffering , frustrations , an d anxiet y ofte n accompan y impairment, an d n o amoun t o f socia l chang e o r theor y wil l tak e those away . Eve n thoug h pai n an d eve n les s extrem e kind s o f discomfort ar e mediate d b y socia l an d politica l contingencies , the y remain intensel y persona l experiences . I believ e tha t discours e o n the social , cultural , an d politica l meanin g o f disabilit y ca n an d should tak e o n thes e issues , whic h disabilit y studie s ha s no t ye t done successfully . Pau l Longmore , i n a persona l conversatio n i n 1996, describe d thi s ga p i n th e literatur e a s "th e nee d t o theoriz e about impairment. " I t i s incumben t upo n disabilit y studie s theo rists t o articulat e thes e element s o f experienc e becaus e the y ar e relevant t o man y area s o f inquiry, fro m literar y criticis m t o anthro pology, fro m clinica l psycholog y t o cultura l studies . Disability studies theorist s d o nee d t o grapple mor e directl y wit h "impairment" an d recogniz e tha t i t i s a s nuance d an d comple x a construct a s "disability. " Ther e ha s bee n muc h discussio n abou t this, bu t i t stil l remain s unarticulate d i n theory. 1 W e hav e bee n hesitant t o g o i n a particula r directio n i n th e developmen t o f theory—that is , towar d th e issu e o f impairmen t itself . A s w e tal k about i t amon g ourselves , we'v e acknowledge d tha t w e hav e bee n reluctant t o theoriz e abou t th e actua l pai n an d limitation s tha t w e experience. I t ma y b e th e manifestatio n i n theor y o f a persona l denial o f th e impac t an d consequence s o f impairment . Ye t i t ma y also b e th e tremendou s difficult y i n articulatin g impairmen t i n ways tha t d o no t essentializ e disabilit y o r reduc e i t t o a n individua l problem. I thin k w e recogniz e tha t outsid e critic s would b e willin g to latc h ont o idea s abou t impairment , an d tha t woul d deflec t attention fro m th e mor e sociall y demandin g issue s suc h a s civi l rights o r oppression . 138

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We ca n loo k t o writin g i n relate d domain s fo r informatio n o n how t o d o this . Morri s (1991) , i n The Culture of Pain, has don e some interestin g wor k theorizin g abou t pain , somethin g tha t i s usually though t o f a s a distinctl y biologica l event . H e comment s that "traditional Western medicine—by which I mean not so much individual doctor s an d researcher s a s a n entir e scientific-medica l worldview tha t permeate s ou r culture—ha s consistentl y le d u s t o misinterpret pai n a s n o mor e tha n a sensation , a symptom , a problem i n biochemistry" (5) . He closes his introduction b y promising to elaborate on th e meaning s accorded t o pain: "Pain on thi s new groun d wil l . . . [b e understood ] . . . a s an experienc e tha t also engage s th e deepes t an d mos t persona l level s o f th e comple x cultural an d biologica l proces s we call living" (7) . Morris's work is not a simpl e mind-over-matte r orientatio n t o pain , no r i s i t a palliative for peopl e who experience pain t o help the m find meaning i n thei r suffering ; i t i s a n entreat y t o thos e to o willin g t o be reductiv e i n thinkin g abou t pain . H e als o make s a cas e fo r reconsideration o f Western medicine' s dominatio n ove r the meanings accorded t o pain, a point tha t disabilit y studies scholars make repeatedly about medicine's claimed authorit y on disability and on impairment. I n reducin g pai n o r impairmen t t o somethin g tha t needs t o b e "fixed " an d medicin e a s th e remed y t o tha t state d problem, medicine succeeds in cornering the market on knowledge about these phenomena. Although I hav e raise d th e issu e o f impairmen t apropo s o f "problems," th e explicatio n o f impairmen t shoul d i n n o wa y b e confined t o experienc e tha t ha s a negative valence. A phenomenological approach to the study of impairment will yield the rich array of description s o f experienc e tha t on e i s likel y t o overhea r i n th e corridors at a Society for Disabilit y Studies conference, o r the back rooms o f an independen t livin g center: th e insiders ' experienc e o f body, an d o f sensory, emotional, an d cognitiv e functioning tha t is expressed most openly within disability circles. 139

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One researc h domai n tha t i s ye t t o b e full y explore d fro m th e perspective o f disable d peopl e i s th e kinesthetic , proprioceptive , sensory, an d cognitiv e experience s o f peopl e wit h a n arra y o f disa bilities. Fo r instance , becaus e I us e a wheelchair, I utiliz e m y uppe r body fo r mobilit y an d roc k bac k an d fort h a s I prope l mysel f forward. M y heigh t whe n I a m vertica l differ s fro m m y measure d height horizontally , an d m y impairmen t influence s m y heigh t rela tive t o object s i n th e worl d an d t o othe r people . Eac h o f thes e experiences ha s a n impac t o n m y sens e o f m y bod y i n spac e an d affects th e informatio n I a m expose d t o an d th e wa y I proces s sensory information . Given tha t m y experienc e o r th e experienc e o f someon e wh o i s blind o r deaf , o r o f someon e wh o ha s menta l retardatio n ha s been underrepresente d acros s th e disciplines , w e ar e missin g th e constructs an d theoretica l materia l neede d t o articulat e th e way s impairment shape s disable d people' s versio n o f th e world . Eve n a s I writ e this , I a m strugglin g t o find th e word s t o describ e thes e phenomena adequately . I t i s particularl y difficul t t o find languag e to describ e m y experienc e tha t i s no t relational , meanin g descrip tions tha t d o no t measur e m y movement s i n relatio n t o nondisa bled norms . Th e fac t tha t impairmen t ha s almos t alway s bee n studied fro m a defici t mode l mean s tha t w e ar e deficien t i n lan guage t o describ e i t an y other wa y than a s a "problem. " The wor k o f Olive r Sack s come s t o min d a s someon e wh o ha s attempted t o refram e th e discours e o n impairment . Unfortunately , there i s a clinica l overla y t o hi s materia l an d a n assumptio n o f a doctor-patient configuratio n tha t compromis e hi s project . Particu larly in th e theatrica l presentatio n o f his work i n The Man Who, in which "doctors " costume d i n whit e la b coat s intervie w "patients, " the disable d persons ' experienc e i s not depathologized ; rather , thei r quirks ar e turne d int o object s o f aestheti c interest , an d th e doctor' s competence i n diagnosi s an d interpretatio n i s valorized. Sack s an d others, suc h a s Thoma s Szas z an d R . D . Laing , d o attemp t t o 140 D I S A B I L I T Y S T U D I E S / N O T D I S A B I L I T Y STUDIE S

dissociate "disability " fro m "problem, " bu t t o th e exten t tha t thei r work fail s t o accoun t fo r th e authors ' relativ e powe r an d fo r thei r claimed authorit y fo r thei r subjects ' experience , i t i s an incomplet e endeavor contributin g mor e t o th e appropriatio n o f disable d peo ple's experienc e tha n t o it s elucidation . Further , Sacks' s work , although haile d a s a literary achievement , fail s a s a disability studie s project becaus e i t doe s no t contribut e t o th e self-determinatio n o r self-definition o f disable d people , an d doe s no t explicat e a socio political-cultural understandin g o f disability . A s To m Shakespear e (1996) said , i n a revie w o f An Anthropologist on Mars, "Olive r Sacks, th e ma n wh o mistoo k hi s patient s fo r a literar y career , violates ever y existin g principl e o f disabilit y equality . . . . H e de scribes himsel f a s 'makin g hous e call s a t th e fa r borde r o f experi ence', bu t h e i s mor e lik e a colonialis t tha n a genera l practitioner " (139). Give n thes e criticisms , i t i s importan t t o conside r whether , in fact , Sacks' s essay s d o succee d a s literar y work s i n tha t the y ar e unlikely t o stimulat e th e readershi p t o view disabled peopl e i n thei r complexity, a s sentient, purposefu l people . All o f thi s i s to say , jus t because materia l o n disabilit y emerge s i n th e libera l arts , i t i s no t necessarily disability studies i f it does no t challeng e th e notion s tha t disability i s an individua l conditio n an d a problem needin g medica l solutions. Problem 3 i s th e absence of subjectivity in scholarship. Th e voic e of disable d peopl e shoul d b e presen t i n bot h disabilit y studie s an d applied approache s t o disable d people , bu t th e voic e shoul d tak e different for m i n each . Th e influenc e an d directio n o f disable d people shoul d permeat e th e applie d fields. I f rehabilitatio n profes sionals reall y believ e i n self-determinatio n fo r disable d people , the y should practic e what the y teach b y adhering t o a n activ e affirmativ e action progra m i n thei r ow n departments ; b y adoptin g th e book s and essay s o f disable d peopl e int o thei r curricula ; an d b y de manding tha t disable d peopl e hav e a n activ e voic e i n conferenc e planning an d o n th e platfor m a t conferences. I n th e libera l arts , th e 141

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active voice , th e creativ e voice , th e narrative , ca n b e articulate d i n the humanities , an d i n qualitativ e an d interpretativ e researc h i n th e social sciences . Women's studie s ha s demonstrate d th e scholarl y potentia l o f personal narrative s b y mapping th e way to interpre t th e persona l a s the politica l an d a s th e scholarly . Feminis t scholarshi p ha s als o turned th e entir e academi c curriculu m insid e ou t t o revea l th e epistemological consequence s o f th e androcentri c biase s i n th e knowledge base . Disabilit y studie s scholar s ar e als o explicatin g th e political an d scholarl y antecedent s an d consequence s o f persona l experience. No w scholar s o f al l stripe s mus t recogniz e thei r mora l and intellectua l obligatio n t o evaluat e th e gap s an d fault s i n th e knowledge bas e the y disseminat e t o student s tha t resul t fro m th e missing voices o f disabled people . Problem 4 , the objectification of disabled people, can b e redresse d by developing scholarshi p fro m th e positio n o f the disable d subject ; by developin g alternativ e methodologie s t o th e empiricis t ap proaches tha t hav e dominated th e stud y o f disability; b y developin g the activ e voic e i n th e humanities ; an d b y breakin g dow n stereo types throug h th e analysi s o f metaphors, images , and al l representa tions o f disabilit y i n th e academi c an d popula r cultures . Th e over whelming majorit y o f scholarshi p o n disabilit y eithe r utilize s o r implies th e third-perso n plural : "they " d o this , "they " ar e lik e that , "they" nee d suc h an d such . Thi s contribute s t o th e objectificatio n of disable d peopl e an d contribute s t o th e experienc e o f alienatio n disabled peopl e s o often report . Problem 5 i s essentialist and deterministic explanations. A s wit h much o f the transformativ e scholarshi p o n rac e and gender , disabil ity studie s serve s a remedia l function , necessar y t o correc t omis sions, inaccuracies , an d fault y logic . Tw o particularl y perniciou s ideas tha t nee d t o b e vigorously conteste d ar e determinist arguments that explai n huma n behavio r an d achievemen t i n term s o f biolog y

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and thos e tha t explai n achievemen t i n term s o f individua l psycho logical makeup . Feminist studies , disabilit y studies , an d Africa n America n stud ies, amon g others , challeng e th e notio n tha t biolog y i s destiny . Each elaborate s o n th e mutabilit y o f human behavio r t o counterac t essentialist argument s an d t o demonstrat e tha t ther e are few huma n practices tha t ar e inevitable . Specifically , disabilit y studie s chal lenges th e assumptio n tha t th e socia l an d economi c statu s an d assigned role s o f peopl e wit h disabilitie s ar e a consequenc e o f disabled people' s "natural " inferiority . However , "unlik e othe r mi norities, . . . disable d me n an d wome n hav e no t ye t bee n abl e t o refute implici t o r direc t accusation s o f biologica l inferiorit y tha t have ofte n bee n invoke d t o rationaliz e th e oppressio n o f group s whose appearanc e differ s fro m th e standard s o f th e dominan t ma jority" (Hah n 1988 , 26). Yet, eve n whe n biologica l argument s fo r differenc e i n socia l position ar e discredited , ther e remain s th e persisten t belie f tha t th e cause of social disadvantage i s within individual s an d tha t chang e is dependent o n persona l transformation . Psychologica l explanation s of th e behavio r an d socia l positio n o f member s o f minorit y group s have a prominen t plac e i n traditiona l curricula . Fo r instance , th e meaning mos t ofte n accorde d disabilit y i s tha t i t i s a persona l condition rathe r tha n a social issue , an individua l pligh t rathe r tha n a politica l one . When individual s wit h disabilitie s fai l i n education , employment, o r love , th e failur e i s attribute d eithe r t o th e disabil ity, itsel f considered a n obstacl e t o achievement , o r t o th e individu al's psychologica l weaknesse s o r lac k o f resiliency , th e inabilit y t o "overcome" misfortune . These explanation s foregroun d th e individua l an d giv e littl e consideration t o th e barriers , discrimination , negativ e imagery , an d lack o f opportunit y tha t shap e experience . Withi n thi s framework , efforts aime d a t helpin g th e individua l cop e wit h an d adjus t t o

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personal tragedie s see m mos t logical . T o furthe r thi s myopi c vie w of th e experienc e o f disability , new s storie s abou t disabilit y ar e invariably huma n interes t tale s o f individua l accomplishment , dense i n th e rhetori c o f "overcoming, " th e narrativ e o f persona l triumph ove r adversity . Education, clinica l psychology , an d othe r socia l science s hav e been particularl y influentia l i n creatin g thes e deterministi c narra tives. Thes e fields conceptualiz e disabilit y a s devianc e fro m th e norm, a s pathologica l condition , an d a s deficit , an d concentrat e their effort s o n th e measuremen t o f individual deviance , pathology , and deficits . Thi s structur e posit s a n idea l standar d o f physical , psychological, an d sensor y functionin g fro m whic h an y disability i s considered a deviation. This i s remarkably simila r t o th e traditiona l evaluation o f women , describe d b y Caro l Tavri s (1992 ) i n The Mismeasure of Woman. Sh e tell s o f th e wa y researc h ha s ofte n measured wome n agains t som e idealize d mal e norm , attemptin g t o explain women' s behaviora l difference s i n term s o f perceive d bio logical o r psychologica l difference s rathe r tha n difference s i n powe r and circumstance . Thomso n (1990) , i n discussin g th e positio n o f people with disabilitie s i n society, remind s u s of the power differen tial betwee n nondisable d an d disable d people , reinforce d becaus e "the dominan t grou p define s itsel f a s normative " (239) . Analyse s such a s thes e ar e essentia l t o hel p focu s attentio n o n th e processe s that cente r an d privileg e certai n peopl e an d characteristics . Scholarship tha t relie s o n individua l deterministi c explanation s of socia l phenomen a i s als o use d t o explai n racism , sexism , an d ableism. Adolp h Ree d (1995 ) note s tha t th e developmen t o f psy chological explanation s o f racis m cam e abou t i n th e lat e 1930 s when a n "elit e commitment t o scientifi c racism , roote d i n biologis tic defense s o f inequality , wa s eroding. " Ree d believe s tha t Gunna r MyrdaPs (1944 ) An American Dilemma: The Negro Problem and Modern Democracy ushered i n a perio d o f describin g "racis m i n individual, psychologica l term s rathe r tha n i n relatio n t o stat e 144

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action." MyrdaP s framewor k "reduce d racis m t o th e leve l o f beliefs that white s hel d abou t blacks " (506 ; Reed' s emphasis) . A similarl y individualistic explanatio n pervade s th e vas t literatur e o n attitude s toward disabilit y tha t examine s personalit y variable s a s the y relat e to nondisable d peoples ' acceptanc e o r rejectio n o f disable d peopl e as friends, classmates , o r lovers . The introductio n o f th e socia l explanation s foun d i n th e disabil ity studie s literatur e broaden s th e investigatio n o f ableis m t o in clude socia l condition s tha t mediat e response s t o disability . Th e conditions includ e th e economi c an d socia l structure s tha t affec t the relativ e positio n o f an d interaction s betwee n disable d an d non disabled people . The condition s als o include th e natur e an d qualit y of representation s o f disabilit y i n al l curriculu m domain s an d i n cultural products . O f course , th e degree s o f integratio n i n livin g arrangements, educationa l institutions , an d cultura l an d socia l environments ar e essential component s o f this analysis , as are the politi cal climat e an d legislativ e safeguard s tha t influenc e socia l interac tions. Therefore, t o counterac t essentializin g an d deterministi c narra tives o f disability , th e field o f disabilit y studie s shoul d focu s o n social, political , an d cultura l analyses . Thi s shif t afford s a mor e comprehensive vie w o f societ y an d huma n experience , an d th e attribution o f significance t o human variation . These types of analysis challenge th e biologica l a s well a s the individua l an d psychologi cal explanations o f human experience , achievement , an d behavior . Other problem s liste d includ e th e medicalization of disability (6), overemphasis on intervention (7) , an d the disproportionate amount of information on disability in the applied fields (8) . Al l o f thes e ca n be helped b y delineatin g betwee n disabilit y studie s an d th e applie d approaches. Becaus e ther e ha s bee n s o muc h emphasi s o n th e ap plied approaches , wit h thei r medicalize d versio n o f disability, thes e ideas ten d t o spil l ove r int o al l othe r inquir y int o disability . I n housing th e social , political , an d cultura l inquir y int o disabilit y i n 145

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a separat e libera l arts-base d domain—disabilit y studies—an d mak ing th e field robust , th e medicalize d paradigm s ca n b e use d onl y where appropriate , an d th e political , social , an d cultura l paradigm s can b e understoo d a s valid organizin g tool s fo r knowledg e o n dis ability. Within th e applie d fields, ther e i s inadequate response to the educational and medical interventions the disability community deems important (proble m 9) . I am advocatin g a liberal arts-base d disabil ity studies, bu t th e applie d fields would benefi t fro m a n infusio n o f disability studie s scholarshi p an d disabilit y right s perspectives . To begin , i t i s essential tha t leadershi p an d contro l o f disability related service s b e i n th e hand s o f disable d people . I n bot h th e academic an d communit y respons e t o th e educationa l an d healt h care need s o f disable d people , disable d peopl e ar e relegate d t o th e patient, student , o r clien t role , an d rarel y ge t t o b e th e professor , the teacher , th e clinician , o r clini c director . Further , th e mode l o f inclusion currentl y bein g applie d i n a numbe r o f elementar y an d secondary educationa l settings , wher e ful l integratio n o f disable d and nondisable d childre n i s takin g place , shoul d b e applie d t o health car e services as well, so that disable d peopl e are not restricte d to rehabilitatio n facilitie s an d othe r specialize d service s fo r thei r health car e needs . The leadershi p o f disable d peopl e i n th e applie d fields ca n tak e many forms , a s ca n thei r influenc e o n practices . Clearly , professor s and professional s wit h disabilitie s woul d b e extremel y important . Collaborative project s wit h communit y organization s woul d b e another form . I n addition , student s shoul d lear n abou t th e histor y of their practice , and abou t th e social an d politica l issue s that fram e their work. Provisio n o f this typ e o f contextual materia l would hel p students evaluat e th e impac t o f th e dominanc e o f th e medica l profession, almos t exclusivel y nondisabled , o n type s o f interven tions designe d fo r disable d people . Th e issue s o f control , self -

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determination, an d self-definitio n ca n b e discusse d withi n suc h a framework. Poetry, film, an d othe r creativ e product s ca n als o b e use d t o introduce disabilit y perspective s int o th e applie d fields. I n a recen t Disability Studies Quarterly a boo k o n African-America n perspec tives o n health , illness , aging , an d los s wa s reviewed . I t i s a n anthology o f poetr y an d pros e t o b e use d b y thos e enterin g th e medical profession , mostl y non-Africa n Americans , t o provid e in sight int o customs , beliefs , an d cultura l practice s value d b y Africa n Americans. Othe r voice s o f disable d peopl e ca n b e brough t int o professional program s i n th e applie d fields throug h suc h vehicles . Courses i n disabilit y studie s shoul d b e offere d i n th e professiona l programs, i n par t a s a mean s t o brin g th e activ e voic e o f disable d people int o th e academi c curriculum . Fo r instance , I teach a cours e in a reha b program ; officiall y title d "Socia l an d Psychologica l As pects o f Disability," i t actually is a basic liberal art s survey course i n disability studies . W e rea d literar y criticism , vie w films, discus s current issue s in th e disabilit y right s movement , rea d anthropologi cal an d historica l materials , an d revie w psychologica l theory , wit h a disabilit y readin g o f tha t theory . Becaus e student s don' t obtai n a liberal art s educatio n i n disabilit y no r a politica l educatio n i n disability anywher e els e i n thei r education , I thin k i t i s critica l t o provide tha t withi n th e professiona l programs . I t i s hope d tha t each o f thes e strategie s wil l hel p futur e practitioner s remai n aler t to th e right s o f disable d people , an d aler t t o disable d people' s authority an d knowledge . I t i s particularl y importan t fo r disable d students i n thes e program s t o b e expose d t o disabilit y histor y an d culture. The liberal arts, particularly the humanities, have barely noticed disability (problem 10 ) beyon d th e model s tha t the y accept uncriti cally, hande d dow n fro m th e science s an d medicine . Th e tool s o f inquiry i n th e humanitie s have , unti l recently , rarel y bee n applie d

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to understandin g disabilit y a s phenomenon . A simpl e tes t reveal s the obscurit y o f disability ; a searc h o f a dat a bas e i n history , literature, o r philosophy usin g th e descriptor s disability, disabled, or disability studies is unavailing . Ye t i f yo u searc h you r interna l dat a base (insid e your head), you ar e likely to recogniz e the pervasivenes s of disabilit y i n regar d t o historica l figures, consequence s o f war , literary representation , metaphor , ethica l issues , symbolism, subjec t matter i n cultural products, and an y number o f other themes , ideas, or concret e event s wher e huma n being s ar e involved . Eve n i n th e social sciences , th e stud y o f disabilit y i s cordone d of f int o course s such a s the sociolog y o f deviance , abnorma l psychology , an d medi cal anthropology , whic h assum e th e logi c o f th e medica l vie w o f disability a s deficit, a s pathology, an d a s problem . Problem 11 : Insufficient attention is given to the minority-group status of disabled people,and the cultural, social and political meanings of that status throughout the curriculum. Advocate s i n th e applie d fields have ofte n worke d towar d politica l chang e fo r disable d peo ple, an d i t i s hope d the y alway s will , bu t thei r action s d o no t emanate fro m th e knowledg e bas e an d approache s use d i n th e applied fields; thei r action s ste m fro m persona l an d mora l commit ments t o improv e th e live s o f disable d people . Arokiasam y (1993 ) writes tha t "th e rehabilitatio n practitioner , neithe r b y trainin g no r job role , is suited fo r activis m o f such macr o proportions " (84) . H e distinguishes betwee n societal-leve l (macro ) an d individual-leve l advocacy; th e latter , h e believes , i s bes t accomplishe d b y teachin g and encouragin g self-advocac y i n "clients. " M y purpos e her e i s no t to discourag e politica l activism . Indeed , th e mor e committe d thos e in th e applie d fields are , th e better . However , w e nee d t o recogniz e that thes e action s hav e n o basi s i n th e curriculu m tha t student s i n the applie d fields are exposed to . In bot h th e applie d fields an d i n libera l arts-base d disabilit y studies courses , ther e ar e a numbe r o f place s wher e idea s an d information abou t disable d people' s social an d politica l statu s coul d 148 D I S A B I L I T Y S T U D I E S / N O T D I S A B I L I T Y STUDIE S

be covered . I n th e applie d fields, cours e materia l coul d cove r th e history an d curren t statu s o f practice , wit h particula r attentio n t o the relativ e powe r an d privileg e o f healt h an d educatio n prac titioners, eve n thos e wh o ar e disabled , compare d wit h tha t o f th e disabled communit y the y serve. Courses i n disabilit y studies would , of course , cove r th e politica l issue s involve d i n th e disabilit y right s movement an d th e independen t livin g movement , a s wel l a s th e factors tha t imped e politica l change . Before turnin g t o problem 1 2 and explainin g how differentiatin g between disabilit y studie s an d "no t disabilit y studies " ca n addres s it, a few othe r relate d issue s should b e kept i n mind . First, conside r ho w th e distinctio n amon g th e term s disability, handicap, and impairment have benefite d th e developmen t o f scholarship o n disabilit y an d hav e benefite d disable d people . The differ entiation ha s focuse d attentio n o n th e socia l an d politica l contin gencies that shap e disable d peoples ' lives. In developin g curriculum , we shoul d follo w tha t sam e logi c an d utiliz e th e ter m disability studies solely for investigation s o f disability a s a social, cultural , an d political phenomenon . Similarly, dea f scholars hav e mad e th e distinctio n betwee n Deaf, to identif y thos e wh o shar e a languag e an d a culture , an d deaf, t o identify thos e wit h th e audiologica l conditio n o f no t hearing , i n order t o focu s attentio n o n th e cultura l constructio n o f deafness . As Padde n an d Humphrie s (1988 ) write , th e "knowledg e o f Dea f people i s no t simpl y a camaraderi e wit h other s wh o hav e a simila r physical condition , bu t i s . . . historicall y create d an d activel y transmitted acros s generations " (2) . Ye t th e stud y o f deafnes s i n most institution s remain s mire d i n a medicalized , interventionis t discourse an d th e stud y o f Dea f cultur e rarel y appears i n th e libera l arts curriculum. A recent a d in th e New York Times for a n academi c position liste d a n openin g fo r a "Dea f Studie s Instructor. " O n th e next lin e i t said , "Duties : Teachin g America n Sig n Languag e an d other huma n service s courses . . . . " I a m no t arguin g her e fo r th e 149 DISABILITY S T U D I E S / N O T DISABILIT Y STUDIE S

elimination o f huma n service s courses , althoug h I frequently , wit h little provocation , argu e fo r a chang e i n thei r for m an d ideologica l underpinnings; I a m makin g a poin t abou t th e us e o f th e term s disability studies or Deaf studies to describ e them . Th e adoptio n o f the ter m disability studies b y th e applie d fields a s a hi p wa y o f labeling curriculum they'v e always taught doe s a disservice to schol ars working t o establis h th e validity and interna l consistenc y o f thi s field. Looking a t th e histor y o f women' s studies , w e ca n se e simila r struggles. Th e field earl y o n differentiate d betwee n th e meanin g o f sex and gender. Recognizing tha t gende r i s socially constructed doe s not preclud e understandin g o r respondin g t o se x a s primaril y a biological event . Similarly , creatin g th e ter m women's studies t o describe th e meanin g an d functio n o f gende r i n al l it s manifesta tions doe s no t obviat e th e nee d fo r a n academi c respons e t o sex. Therefore, jus t a s gynecolog y ca n b e though t o f a s a n academi c response t o sex , rehabilitatio n ca n b e though t o f a s a n academi c response to impairment , o r audiolog y t o deafness . And , i n th e sam e way tha t women' s studie s ha s influence d th e trainin g an d deliver y of service in gynecology , disabilit y studies ca n an d shoul d influenc e the curriculu m an d practic e i n rehabilitatio n an d specia l education , and Dea f studies ca n influenc e audiology . A secon d point . Disable d peopl e an d thei r allie s hav e fough t t o delineate disable d peopl e a s a minorit y group . Th e continuu m approach—the ide a tha t ther e shoul d b e n o distinctio n mad e be tween disable d an d nondisable d people—doesn' t was h whe n yo u observe th e specifi c treatmen t o f disable d peopl e i n society . There fore, articulatin g th e way s tha t disable d peopl e ar e a minorit y group i s a strategic endeavo r t o focu s o n th e socia l constructio n o f disability an d th e treatmen t o f th e name d minorit y group . Ther e are als o epistemologica l consequence s o f explainin g th e way s tha t disabled an d nondisable d peopl e ar e distinct groups . If , throughou t the curriculum , disabilit y wer e t o b e recognize d a s a minority 150 D I S A B I L I T Y S T U D I E S / N O T D I S A B I L I T Y STUDIE S

group statu s an d a s a marke r o f identity , i t woul d hav e a n impac t on th e entrenched vie w that disabilit y i s a problem, an d a n individ ual, medica l problem . Further , th e marke d categor y woul d hel p organize knowledg e o n representation s o f th e grou p an d focu s attention o n th e absenc e o f voice fro m th e perspectiv e o f member s of the group. The mov e t o secur e th e distinctio n betwee n disabilit y studies an d th e applie d fields' respons e t o disabilit y i s consonan t with th e distinctio n betwee n disable d an d nondisabled , an d be tween disabilit y an d impairment . Th e nee d fo r a distinc t field o f disability studie s i s premise d o n th e belie f tha t disabilit y ha s bee n socially constructe d an d tha t constructio n serve s a variet y o f intel lectual an d socia l ends . Th e facet s o f tha t constructio n ca n b e illuminated b y alteration s i n th e conten t o f th e curriculu m i n eac h field an d b y a shif t i n th e placemen t o f th e stud y o f disabilit y within th e curriculum . A thir d rational e fo r delineatin g betwee n disabilit y studie s an d the applie d fields i s uncovere d b y tracin g th e histor y o f women' s studies an d comparin g i t wit h th e trajector y o f disabilit y studies . Although i t i s understandabl e tha t som e o f th e earl y wor k i n disability studies came from withi n th e applied fields, where disabil ity ha s traditionall y bee n studied , i t i s tim e t o separat e th e tw o areas an d illuminat e th e boundarie s betwee n them . I n th e histor y of feminist inquiry , th e "applie d fields, mos t notabl y applie d ethic s were th e first area s i n whic h feminis t wor k wa s published. " Ther e is a logi c t o tha t becaus e "feminis m i s first an d last , a politica l movement concerne d wit h practica l issues . A t first, th e mor e ab stract area s o f philosoph y seeme d distan t fro m thes e concret e con cerns." Feminist s bega n t o realiz e tha t the y coul d addres s socia l problems no t onl y throug h th e applie d fields whe n the y sa w "th e problems produce d b y androcentris m i n . . . th e 'core ' area s o f epistemology" (Alcof f an d Potte r 1993 , 2)—in othe r words , i n th e more abstrac t philosophica l inquiries . I not e thi s t o poin t ou t a n important distinction : th e "applie d fields" i n feminism' s history — 151 D I S A B I L I T Y S T U D I E S / N O T D I S A B I L I T Y STUDIE S

for example , applied ethics—ar e no t focuse d o n individual , biologi cally derive d problem s o f wome n bu t o n socia l an d cultura l ones , so applied ethic s was a logical plac e to address the social "problems " that feminis m wa s concerned with . People concerne d wit h th e practica l problem s o f ableis m wil l have t o wor k broadl y acros s th e discipline s t o uneart h ho w an d where discriminatio n agains t an d marginalizatio n o f disable d peo ple ca n b e studied . Ther e ar e fe w tool s availabl e i n th e medicalized applied fields tha t ca n conduc t suc h a n inquiry , an d th e paltr y representation o f disability i n th e libera l art s hav e mad e suc h inves tigations difficult . Further , a s Messer-Davido w (1991 ) notes , "[T]he making o f socia l chang e doe s no t exis t a s a n academi c in quiry." Sh e goes on t o sa y that i t i s more typica l t o "stud y what gets changed an d when i t get s changed , bu t no t how i t changes . . . . Studies tha t d o focu s o n thes e processes often ar e regarded a s 'popu lar' rathe r tha n scholarl y and thu s dismissed by the academy" (293) . A fourth issu e before returning to the list of responses to problems in th e traditiona l curriculum : A questio n tha t i s heard i n disabilit y studies circles—an d ha s bee n fo r year s i n women' s studies , lesbia n and ga y studies , an d s o on—is , who shoul d teac h an d writ e i n th e field? Whethe r disable d or nondisabled people create scholarship has particular consequence s fo r th e scholarshi p produce d an d fo r disa bled people' s lives . Bot h disable d an d nondisable d peopl e ca n per petuate o r work t o ameliorate th e objectificatio n o f disabled people , the lack of subjectivity, th e absence of voice, and th e absence of selfdefinition an d self-determination . I don't assum e tha t disable d peo ple are exempt from th e tendency to stereotype or objectify; afte r all , disabled peopl e an d nondisable d peopl e have both bee n schoole d i n the same ableist discourse . Nondisabled people , though , hav e a particular responsibilit y t o engag e consciousl y an d deliberatel y wit h these issue s i n thei r scholarshi p an d teachin g t o avoi d contributin g to the problem. I think tha t i t is incumbent o n nondisable d scholar s to pa y particular attentio n t o issue s of their ow n identity , thei r ow n 152

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privilege as nondisabled people , and th e relationshi p o f these factor s to their scholarship . Analyses o f th e specific s o f one' s identit y o r statu s a s i t affect s scholarship shoul d no t b e though t o f i n reductiv e term s suc h a s "identity politics " o r th e eve n mor e obfuscator y "politicall y cor rect." I n an y wa y tha t scholarshi p ca n b e influence d b y identity , social position , experience , sensor y acuity , cognitiv e functioning , physical configuratio n an d functioning , o r othe r characteristics , scholars nee d t o accoun t fo r o r contro l fo r tha t influence . I n th e same wa y tha t socia l scientist s hav e alway s bee n taugh t t o contro l for variable s tha t migh t influenc e thei r research , al l scholar s shoul d account fo r th e influenc e relate d t o experienc e an d poin t o f view as it directl y relate s t o th e researc h a t hand . Further , a s I mentione d earlier, th e articulate d o r implie d third-perso n "they, " whic h i s pervasive i n scholarshi p o n disability , increase s th e objectificatio n of disabled people . That, alon g with th e absence o f subjectivity, ha s an impac t o n self-determinatio n an d self-definition—s o critica l t o disabled people' s lives . Stating one's position relativ e to th e subject matte r i s of theoretical importanc e an d i t i s als o o f politica l importance . Statin g tha t one identifie s a s disable d o r nondisable d call s attentio n t o th e absent voic e o f disable d peopl e i n scholarshi p an d illustrate s tha t the reade r ma y ten d t o mak e th e assumption , althoug h probabl y not consciously , tha t th e write r i s nondisabled . Feminist , Africa n American, an d lesbia n an d ga y studie s hav e followe d thi s conven tion fo r a lon g time , markin g th e female , black , an d lesbia n an d gay voice. I t i s interestin g tha t recentl y th e male , white , heterosex ual identit y i s bein g marke d mor e systematicall y an d theorized , with essay s o n "whiteness " appearin g wit h th e mos t frequency . I am suggestin g tha t nondisable d an d disable d scholar s workin g i n disability studie s follo w tha t traditio n an d discus s thei r subjec t position an d th e consequence s fo r thei r scholarshi p i n similarl y complex an d meaningfu l ways . 153

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Further, thos e writin g i n disabilit y studie s ca n challeng e th e minimal presenc e of disabled scholar s in th e institutions with whic h they ar e affiliated. The y ca n examin e i n scholarshi p th e histor y an d consequences o f discriminatio n i n educatio n an d employment , th e absence o f affirmative actio n guideline s fo r disable d people , an d th e failure o f institution s o f highe r educatio n t o evidenc e a commit ment t o disable d peopl e an d disabilit y issues , other tha n tha t man dated b y law. As scholars, we ca n us e th e tool s o f ou r trad e towar d shifting thi s trend . Further , bot h disable d an d nondisable d scholar s can revie w their commitment s t o th e tenet s o f disability studies an d to th e disable d communit y b y considerin g ho w the y engag e disa bled peopl e withi n an d outsid e th e academ y i n thei r work . A s a n example, Carol Gill , a disabled woman, a psychologist, an d directo r of th e Chicag o Institut e o n Disabilit y Research , share d wit h m e notes sh e wrot e fo r a pape r presente d a t th e 199 6 Societ y fo r Disability Studie s conference . Sh e reporte d a n inciden t tha t dem onstrates th e failur e o f commitment tha t som e researcher s evidenc e to th e disable d communit y an d t o equity . A tea m o f healt h professional s announc e thei r commitmen t t o participatory actio n researc h i n developin g a n educationa l vide o on a disabilit y topic . The y characteriz e thei r projec t a s "inclu sive." . . . They sa y it i s guided b y our perspective . I n fact , th e only rol e give n t o peopl e wit h disabilitie s i s th e opportunit y t o serve on a "consensus panel"— a kin d o f continuing focu s grou p whose ai m i s to teac h th e researcher s what the y shoul d cove r i n the video . O f course , peopl e wit h disabilitie s als o serv e a s th e interview subject s i n th e film. Fo r thei r efforts , th e consensu s panel members get snacks, no money . The intervie w subjects ge t $50 each . Th e healt h professional s ar e highl y offende d whe n I tell the m thi s i s not inclusion . They refus e t o hir e a professiona l with a disability to give substantive consulting services. They also refuse t o share authorship wit h a disabled collaborator . Yet , they

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hound m e fo r week s t o serv e o n th e consensu s pane l wit h th e other "consumers. " In th e paper , Gil l cite d thre e mor e incidence s o f disregar d fo r th e expertise an d authorit y o f disabled people . Two year s ag o I wa s similarl y confounde d b y th e behavio r o f faculty member s engage d i n disabilit y research . I learne d tha t a group o f facult y wa s organizin g a majo r conferenc e t o presen t th e university's wor k acros s a rang e o f disciplines i n disabilit y research . The conferenc e wa s bein g planned a s a precursor t o establishin g a n institute o r cente r o n disabilit y researc h a t th e university , an d therefore th e natur e o f the conferenc e an d th e choice of the person nel involve d ha d significan t long-ter m consequences . I began t o as k questions abou t wh o wa s o n th e plannin g committe e an d learne d that o f th e te n o r s o people , no t on e wa s a disable d person . Th e members ha d bee n meetin g fo r som e tim e an d apparentl y n o on e had mad e a n issu e o f this . A grou p o f disable d peopl e initiate d a series o f meetings wit h th e steerin g committe e an d th e presiden t o f the institutio n t o protes t th e compositio n o f th e committee . A group o f us—member s o f th e facult y an d staf f alread y engage d i n research o n disability—wer e allowe d t o joi n th e plannin g commit tee. W e attende d a numbe r o f lon g plannin g sessions , significantl y shifted th e focu s o f th e conference , and , t o m y mind , improve d it s scope an d visio n considerably . W e the n receive d brie f letters sayin g that th e conferenc e ha d bee n cancele d indefinitely , an d despit e phone call s an d letter s t o th e organizers , w e hav e neve r bee n give n a satisfactory answe r a s to why i t was canceled . These example s ar e include d t o poin t ou t tha t disabilit y studie s is a n intellectua l a s wel l a s politica l endeavo r an d tha t thes e ar e reciprocal enterprises . Olive r (1992 ) ha s written abou t th e nee d t o change "th e socia l relation s o f researc h production " (106) . H e sees it no t simpl y a s a matte r o f switchin g fro m positivis t model s o f

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research t o interpretiv e method s but , mor e significantly , a s a nee d to understan d th e powe r relationship s tha t "structur e th e socia l relations o f research production " (110) . Oliver's work point s t o th e need t o conside r th e contextua l variable s tha t shap e what w e stud y and ho w we study it . Returning no w t o th e las t problem , proble m 12 : withi n th e traditional curriculum , ther e i s no t a well-developed epistemologi cal foundatio n fo r a n inclusiv e society . Wha t i s neede d i s a broad based libera l arts , interdisciplinar y inquir y int o th e functio n an d meaning o f disabilit y i n al l it s manifestations . Thi s inquir y shoul d be simila r i n structur e t o women' s studie s an d lesbia n an d ga y studies, an d a s such would b e informe d b y the politica l movement s that generate d th e field, b y cultura l studies , an d b y th e traditiona l disciplines. I t shoul d g o beyon d analyzin g th e exclusio n o f disable d people fro m societ y an d o f disabilit y fro m th e epistemologica l traditions i n societ y t o char t th e people' s an d th e subjects ' plac e i n the civi c and academi c cultures . That i s disability studies . NOTES

1. I hav e bee n informe d i n m y thinkin g abou t thi s b y conversation s with Paul Longmore, David Mitchell, Harilyn Rousso, and Rosemarie Garland Thomson.

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7 APPLICATIONS

E

very yea r increasin g number s o f students , bot h disable d an d nondisabled, ar e entering colleg e from primar y an d secondar y schools wher e mainstreame d classroom s ar e common . Futur e in coming student s wil l hav e bee n par t o f inclusiv e classrooms , wher e not onl y a fe w high-performin g physicall y disable d childre n bu t a spectrum o f student s wit h significan t cognitive , emotional , an d physical an d sensor y disabilitie s wil l al l b e par t o f th e central , cor e culture o f the school . Of course , there's no t goin g t o b e an instan t transformation , bu t I d o thin k tha t disable d an d nondisable d student s wil l b e use d t o one another , an d use d t o workin g togethe r i n way s tha t facult y

have neve r experienced . Th e facult y ar e mor e likel y t o remembe r a time whe n disable d student s an d nondisable d student s wen t t o different schools , o r a t leas t differen t classes , too k differen t schoo l buses, an d wer e usuall y isolate d fro m on e anothe r i n schoo l an d play. No t man y wil l hav e bee n i n college s an d universities , a s th e entering freshme n clas s o f 199 6 was , wher e mor e tha n 1 0 percen t of th e student s reporte d havin g disabilitie s (Thi s year' s freshme n 1997). The students ' colleg e curriculu m wil l als o b e ou t o f ste p wit h their experienc e o f a rang e o f phenomen a relate d t o bein g disable d in late-twentieth-centur y Americ a o r o f witnessin g disabilit y i n these circumstances . Mos t o f th e student s wil l no t notice . Thei r high schoo l classe s will probably no t hav e made mentio n o f disabil ity i n an y over t way . Disabilit y i s unlikel y t o hav e bee n employe d as a perspective i n thei r literature , curren t events , or biolog y classes. The dramati c change s i n publi c educatio n ove r th e pas t twent y years woul d no t hav e bee n interprete d fo r them . Althoug h I hop e that som e mechanism s ar e pu t int o plac e t o teac h youn g disable d people thi s history , t o lear n i n substantiv e way s abou t thei r newl y won rights , an d t o hel p the m se e th e relationshi p betwee n th e personal an d th e political natur e o f the experience o f disability, i t is likely tha t tha t wil l no t b e consistentl y provided . Therefore , al though bot h th e disable d an d nondisable d student s comin g u p ar e likely t o b e mor e experienced , the y will nee d th e opportunit y t o interpret tha t experienc e withi n an d throughou t th e curriculum . Otherwise, the y will no t understan d th e historica l specificit y o f thi s moment, it s meaning an d significance , no r ho w t o creat e meaning ful change . The argument s throughou t thi s boo k i n favo r o f integratin g disability studie s int o th e curriculu m ar e no t presente d solel y be cause mor e disable d student s ar e enterin g college , o r becaus e disa bled an d nondisable d peopl e wil l b e interactin g wit h on e anothe r

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in school s an d i n th e communit y i n way s tha t the y neve r hav e before. Th e nee d t o understan d disability , an d th e constructio n o f disability, clearl y predates th e presen t momen t an d extend s beyon d the boundarie s o f educationa l institutions . Moreover , a s I'v e ar gued, ther e ar e epistemologica l reason s t o debun k th e primac y of medica l interpretation s o f disability , t o interpre t metaphor s o f disability i n orde r t o brin g mor e accurat e reading s t o a text , t o challenge the normal/abnormal dichotomie s an d al l their manifesta tions, an d t o creat e theorie s o r conduc t researc h tha t i s mor e representative, valid , an d universal . Ye t i t woul d b e a mistak e t o ignore th e shiftin g cultur e o f th e school s an d th e changin g studen t body i n considerin g ho w curriculu m i s shaped . In thi s chapter , rathe r tha n loo k insid e th e academi c world , I turn th e camer a outward , towar d th e worl d tha t student s inhabi t when the y leav e college. Let' s conside r wha t the y fac e an d examin e the reason s tha t a mor e substantiv e curriculu m i n disabilit y studie s is crucial fo r preparin g disable d an d nondisable d student s fo r wor k and citizenship , includin g th e specifi c preparatio n o f disable d stu dents t o assum e leadershi p role s i n thei r communities , organiza tions, an d workplaces . All o f thes e student s wil l mee t wit h a n arra y of issue s tha t woul d benefi t from , o r ar e absolutel y dependen t on , a close disability analysis. As they leave school, or even in th e cours e of thei r education , the y wil l confron t critica l incidents—som e tak ing u p a fe w minutes , som e comple x an d long-lasting—tha t wil l require experienc e i n thinkin g abou t disabilit y i n a numbe r o f different domains , critica l reasonin g skills , and , often , a consciou s well-considered sens e o f thei r ow n feeling s abou t disabilit y an d disabled people . Bot h disable d an d nondisable d student s will en counter suc h incidents , an d the y wil l encounte r the m whethe r o r not thei r wor k o r communit y lif e directl y involve s disable d peopl e or disabilit y issues . What follow s ar e a few example s o f some o f thes e issue s embed -

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ded i n vignette s o r cas e histories o f persons i n a job situation , o r i n family o r communit y life . Imagin e yoursel f i n eac h situatio n an d consider ho w well prepare d yo u ar e to pla y ou t you r role . AN ASSISTAN T CURATO R

You wor k a t a n ar t museu m an d ar e i n charg e o f developin g th e written material s tha t accompan y exhibitions . A n installatio n o f paintings b y Goy a i s planned , an d i n preparatio n fo r tha t even t you conduc t researc h o n th e artist , hi s patronage , hi s subjects , an d the historica l perio d i n whic h h e worked . I t occur s t o yo u a s yo u write th e tex t fo r th e audi o guide , th e pamphle t o n th e exhibit, an d the commentar y t o b e poste d besid e eac h paintin g tha t ther e ar e a number o f disabilit y theme s an d issue s tha t coul d b e explicate d i n these materials . Yo u wonde r if , an d how , yo u migh t discus s th e function o f peopl e o f shor t statur e i n Goya' s painting s an d thei r function i n th e cour t o f Charle s IV . Shoul d yo u poin t ou t th e depictions o f fictional monster s an d th e rea l people with anomalou s bodies portraye d a s monstrous ? Mor e important , shoul d yo u com ment o n th e tendenc y o f Goya , an d o f viewers, t o blu r th e distinc tions betwee n peopl e an d supernatura l creatures ? I n othe r words , i s it a goo d ide a t o provid e a n explici t disabilit y studie s readin g o f Goya's paintings ? You examin e you r ol d colleg e textboo k an d wonde r ho w t o counter th e receive d wisdo m tha t th e "follie s an d brutalities " Goy a witnessed an d hi s "increase d infirmities , includin g deafness , com bined t o depres s hi s outloo k an d le d t o hi s lat e 'dar k style ' " (Gardner 1970 , 639) . Ho w ca n you , i n th e contex t o f th e overal l mission o f th e exhibition , challeng e th e kind s o f belief s tha t yo u yourself have held, an d surel y other visitor s t o th e exhibi t ma y hol d as well? Many wh o vie w th e painting s wil l hav e take n th e standar d introductory ar t histor y cours e i n colleg e an d rea d tha t "Goy a presents with a straight fac e a menagerie o f human grotesque s who , critics hav e lon g bee n convinced , mus t no t hav e ha d th e intelli 160 APPLICATIONS

gence t o realiz e tha t th e artis t wa s caricaturin g them " (637) . Yet , you recogniz e tha t man y visitor s will b e offende d b y tha t perspec tive, includin g peopl e wh o hav e physica l characteristic s simila r t o those portraye d i n Goya' s paintings . The y ma y wel l understan d that the y ar e bein g objectifie d an d mocke d i n hi s painting s an d are hopin g tha t th e accompanyin g material s wil l interpre t Goya' s motivation an d discus s th e consequenc e o f those representations . Now, rathe r tha n imaginin g tha t yo u ar e thi s curator , pu t your self i n th e shoe s o f a college professo r teachin g futur e curator s wh o will g o o n t o writ e suc h materials . Yo u migh t b e a literatur e professor, o r a n ar t historian , biologist , ethicist , o r sociologist . What i s you r responsibilit y t o hel p student s challeng e idea s suc h as thos e foun d i n Gardner' s text , o r t o provid e perspective s an d information whe n eve n thos e cover t message s ar e absent? I f you ar e a psycholog y professor , i s i t logica l t o sa y tha t i t i s no t you r job , that th e ar t histor y classe s will provid e th e analysi s o f representa tions o f disability ? Instead , conside r wha t yo u migh t sa y abou t reinforcement theor y an d stereotype s tha t migh t hel p a futur e curator an d othe r student s t o understan d ho w painting s o r othe r representations ma y reinforc e distorte d view s o f disabled people . I f you ar e a historian , wha t migh t yo u sa y abou t th e functio n o f marginal figures i n th e cour t o f variou s king s an d noblemen , an d the particula r rol e o f peopl e wit h anomalou s bodies ? Yo u migh t turn t o Davi d Gerber' s (1996 ) essa y o n th e careers o f peopl e exhibited i n frea k show s t o contextualiz e you r discussio n o f the us e of dwarf s a s jesters i n Europea n court s fro m 160 0 t o 1800 . I f yo u teach ar t history , yo u migh t discus s th e cultura l histor y o f th e museum, an d focu s o n th e Muse e Universe l de s Sourds-Muets , part o f th e Institut e fo r th e Dea f i n France , an d th e Museu m o f Pathological Anatom y i n London , whic h wer e representativ e o f a "new directio n i n museology , toward s th e recordin g o f th e Other " (Mirzoeff 1995 , 199) . Suc h museum s wer e indicativ e o f a tren d i n the lat e nineteent h centur y tha t di d no t brin g abou t greate r expo 161

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sure o f disable d people' s perspective s but , instead , resulte d i n th e valorization o f medical practice . I n th e cas e of the Frenc h museum , "[RJather tha n promot e th e achievemen t o f dea f artists , th e mu seum sough t t o commemorat e th e moder n triump h ove r deafness " (198). If you , th e assistan t curato r ha d take n suc h a class , yo u migh t well ask : I n preparin g thi s exhibition , wha t i s m y obligatio n t o consider th e moral , aesthetic , intellectual , psychological , an d socia l questions tha t th e painting s raise ? Wha t ca n an y professor d o t o ensure tha t a futur e curato r will , a t least , conside r writin g abou t this elemen t o f a painter' s wor k an d posses s th e knowledg e an d perspectives neede d t o follo w throug h o n th e projec t i f sh e o r h e chooses to ? A PERSONNE L DIRECTO R

You ar e th e ne w personne l directo r fo r a midsize d company . Be cause of a number o f factors, includin g a n outreac h effor t tha t you r predecessor organize d a coupl e o f year s ago , th e firm ha s hire d several peopl e wit h differen t disabilities . Yo u hav e learne d tha t a group o f the m hav e bee n meetin g ove r th e pas t si x months . The y appear t o b e wel l organize d an d cal l themselve s th e Disabilit y Action Grou p (DAG) . The y hav e requeste d a n appointmen t wit h you, an d yo u anticipat e tha t the y wan t t o discus s som e remainin g access issues , o f whic h yo u ar e aware . Whe n yo u meet , yo u find that thei r agend a i s quite different . T o you r surprise , the y present a five-page mem o concernin g th e in-hous e hostil e atmospher e an d the failur e o f som e manager s t o provid e reasonabl e accommoda tions. The mem o include s th e following : • Joke s tha t ha d bee n circulatin g o n interoffice e-mai l includ e a few whos e target s wer e peopl e o f shor t statur e an d peopl e wit h mental retardation . A membe r o f DA G ha d sen t a n e-mai l message t o al l employee s tha t th e joke s wer e offensiv e an d should stop , bu t the y continue d t o circulat e fo r severa l days . 162

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• A ramp ha d recentl y bee n installe d t o mak e a formerly inaccessi ble building accessibl e t o employee s wh o us e wheelchairs. Befor e that, tw o disable d employee s schedule d t o mov e t o th e buildin g had submitte d a mem o t o th e desig n tea m wit h suggestion s o n the typ e o f ram p needed , it s idea l location , an d som e safet y measures t o consider , an d ha d aske d tha t a membe r o f DA G b e included i n meeting s t o desig n th e ramp . Despit e th e initiative , the tea m ha d no t include d a membe r an d ha d ignore d mos t o f their suggestions . Th e ram p exite d th e buildin g i n a deserte d area o f th e parkin g lot , nex t t o th e doo r wher e garbag e i s removed. Whe n th e DA G coordinato r confronte d th e desig n team an d th e manage r i n charg e o f safet y issue s wit h th e fact s that th e garbag e smells , tha t rat s ha d bee n spotte d i n th e area , and tha t th e ram p impose d isolation , sh e was told tha t ther e was no othe r wa y t o hav e installe d th e ramp , i t wa s buil t t o code , and ne w lights would mak e th e ram p an d lo t safe . • Further , th e parkin g space s designate d fo r peopl e wit h disabili ties ha d ofte n bee n use d b y othe r employees . DA G too k u p th e matter wit h th e Securit y Office , whic h bega n ticketin g illegall y parked cars . A wee k later , on e o f th e sign s wit h th e wheelchai r symbol ha d bee n defaced . • Th e compan y ha d hel d th e Christma s part y i n a restauran t no t wheelchair accessible, and whos e bathroom s ar e not accessible . A DAG membe r brough t thi s t o th e attentio n th e part y planne r and wa s tol d tha t somebod y woul d carr y hi m u p th e stairs ; things wer e goin g t o b e fine; th e locatio n couldn' t b e change d because of company custom ; an d arrangement s ha d alread y bee n made. • A n employe e who i s blind ha d aske d fo r a different wor k statio n because o f nois e tha t a t time s drown s ou t he r talkin g computer . The superviso r responde d tha t h e ha d alread y mad e enoug h adjustments fo r her ; ther e wa s n o othe r plac e available ; an d sh e should tr y to ignor e th e noise . 163 APPLICATIONS

As you rea d the DAG memo , you recall that on anothe r occasio n a simila r complain t ha d bee n mad e agains t th e sam e supervisor . The charg e ha d bee n dropped , bu t th e superviso r ha d bee n warne d by th e Personne l Departmen t tha t th e compan y i s legall y an d ethically boun d t o compl y wit h suc h request s an d the y ar e t o b e taken seriously . • A n employe e wh o use s a wheelchai r reporte d tha t a ma n wel l known an d respecte d i n th e company , ha s bee n behavin g i n ways tha t sh e identifie s a s both disabilit y an d sexua l harassment . When sh e i s goin g dow n th e hal l h e begin s pushin g he r wheel chair withou t askin g permission . He r statement s tha t sh e prefer s to pus h he r ow n chai r ar e countere d b y remark s suc h a s "Don' t worry. I' m gla d t o hel p yo u out, " "Giv e you r arm s a rest ; yo u must ge t tired, " " I lik e doin g it ; I pus h al l th e handicappe d ladies' wheelchairs a t church. " O n a number o f occasions, he ha s jumped i n fron t o f he r an d opene d th e doo r t o th e Women' s Room i n suc h a way tha t h e entere d th e room , obviousl y unin vited. H e ha s sat next t o her in th e cafeteria a few times, insistin g on talkin g abou t he r disabilit y an d askin g persona l questions . She ha s trie d consistentl y t o tel l hi m tha t hi s presenc e an d attentions ar e not welcome , bu t h e has no t bee n deterred . The compan y i s proud o f its responsible socia l practice s an d ha s been praise d b y th e unio n an d consume r groups . Your predecesso r had als o worke d t o hav e disable d peopl e include d a s a protecte d group i n th e company' s affirmativ e actio n policy . Yo u mus t no w figure out what the company's legal and ethical obligations are, what the impac t o f advers e publicit y migh t b e fo r th e compan y i f DA G "goes public " wit h it s complaints , an d wha t managemen t issue s might ensu e if these well-informed an d disgruntle d employee s spea k out. It will be your job to handle DAG, to communicate to the com pany executives the nature of the complaints, and to finesse the interpersonal tensions that may arise from th e airing of these issues. After confirmin g th e complaints ' legitimac y yo u tak e th e file 164

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home an d spen d a good par t o f the weeken d mullin g matter s over . It i s difficul t t o analyz e th e element s o f th e situatio n an d t o weig h the complaints . Yo u alternate , a t on e tim e seein g a patter n o f behaviors tha t constitut e a hostil e environment—whic h require s a systemic response—an d a t anothe r tim e seein g isolate d incident s that ar e neithe r a s virulent no r a s pervasive a s alleged. The complaint s rais e a number o f questions. I s disability harass ment equivalen t t o sexua l harassment , i n eithe r natur e o f coercio n or i n consequence s fo r th e individua l bein g harassed ? Ho w i s unwanted physica l contac t wit h th e woman' s wheelchai r simila r t o or differen t fro m th e kind s o f unwante d bodil y contac t tha t woul d be considere d sexua l harassment ? I s enterin g th e Women' s Room , seemingly t o "help " wit h th e door , a sexuall y menacin g behavior ? Is an inaccessibl e restauran t comparabl e t o a club tha t discriminate s against Africa n American s o r doesn' t allo w wome n t o becom e members? Wha t typ e o f scal e ca n b e use d t o weig h thes e differ ences? I f someon e wh o use s a wheelchai r i s willin g t o b e carrie d into th e restauran t an d i s the n give n a table , ca n th e restauran t b e deemed t o b e discriminating ? I s th e real issu e no t whethe r th e restaurant itsel f i s accessibl e bu t wha t i t mean s symbolically , ethi cally, an d legall y fo r th e compan y t o persis t i n usin g it ? Shoul d th e employees mos t affecte d b y a ram p hav e th e righ t t o a sa y i n it s placement an d design ? Althoug h OSH A code s an d AD A code s were adhere d to , th e code s don' t cove r ever y contingency . Consider th e preparatio n th e actor s i n thi s dram a nee d i n orde r to engag e i n resolvin g thi s conflict . Wh o ar e th e players ? You , th e personnel director , hav e a n undergraduat e degre e i n som e libera l arts field an d a master' s degre e i n busines s o r huma n services . Where i n you r academi c caree r woul d yo u hav e obtaine d th e tool s to handl e thi s situation ? A graduat e cours e or , mor e likely , a workshop o n th e AD A an d employmen t issue s woul d b e inade quate t o groun d yo u i n th e comple x issue s presente d here . Further , such course s an d workshop s rarel y lin k disabilit y issue s t o sexis t 165 APPLICATIONS

and racis t issue s tha t aris e i n th e workplace . Woul d a similarl y conceived worksho p o n gende r issue s b e sufficien t t o understan d gender equit y issue s i n th e workplace an d sexua l harassment ? Wha t about th e employees? Wher e woul d the y hav e gaine d th e knowl edge to analyz e the inequities , t o recogniz e one anothe r a s member s of a constituency group , an d t o coalesc e aroun d thes e issues ? Wha t of th e othe r employee s implicate d i n th e charges—wher e woul d their disabilit y trainin g hav e com e from ? Wher e woul d th e unac commodating supervisor , th e "helpful " employee , o r th e autono mous desig n tea m hav e had th e opportunit y t o challeng e thei r ow n beliefs o r tak e o n ne w idea s about disability ? Also conside r ho w understandin g an d resolvin g eac h o f thes e dilemmas ca n hav e a n impac t o n othe r managemen t an d personne l concerns. On e ca n rea d eac h complain t i n term s o f a particula r disability issue , a s wel l a s i n term s o f it s relationshi p t o accepte d codes o f behavior , powe r differential s amon g employee s an d thei r impact o n individua l rights , an d autocrati c decision s an d thei r impact o n member s o f a group. A well-prepared personne l directo r might b e abl e t o contextualiz e thes e complaint s an d discus s the m in term s o f th e broade r problem s tha t al l companie s fac e bu t no t lose sight o f the specific disabilit y issue s raised . AN ARCHITEC T

You ar e a n architec t i n a midsiz e firm, i n a midsiz e city , workin g on a midsiz e job . Yo u ar e ne w i n th e firm, an d thi s i s you r first solo project : a library ; a smal l center , wit h a n auditoriu m fo r cultural event s an d communit y meetings ; an d a playground . Th e center will b e i n a neglecte d downtow n area , an d th e cit y ha s requested a building tha t will dra w som e attentio n t o th e area . When yo u joine d th e firm, yo u discusse d wit h you r employer s your commitmen t t o innovativ e projects , particularl y thos e tha t are model s o f integratio n an d accommodatio n fo r peopl e wit h disabilities. Fo r th e presen t project , yo u wan t t o includ e a numbe r 166

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of feature s tha t wil l g o beyon d th e requirement s o f th e ADA , i n that the y will integrat e acces s int o th e overal l concep t o f th e build ing rathe r tha n bein g add-ons . Althoug h th e feature s coul d b e replaced wit h standar d "handicaps-acces s material s withou t com promising th e overal l design , yo u believ e tha t a mor e innovativ e approach coul d hav e significan t symbolic , functional , an d aestheti c impact, an d i t wil l b e you r jo b t o convinc e th e cit y t o bac k th e plan. As yo u anticipat e creatin g th e desire d environment , yo u ar e stymied b y you r lac k o f experienc e wit h trul y integrate d an d ac commodating buildings . Yo u ar e particularl y intereste d i n creatin g an entranc e tha t declare s you r intention : rathe r tha n th e standar d ramp alongsid e th e building—whic h separate s peopl e wh o us e th e ramp fro m peopl e wh o us e th e steps—yo u envisag e a n entranc e that weave s togethe r step s an d slope s s o al l visitor s ca n ente r an d leave th e buildin g togethe r an d interac t wit h on e anothe r a s the y do so . A secon d innovatio n yo u ar e considerin g take s som e o f th e features require d b y th e ADA , suc h a s th e sign s i n Braill e i n th e elevators an d o n offic e doors , an d embed s the m i n th e surfac e texture o f th e wall s a s part o f a visual an d tactil e desig n motif . Yo u have alread y consulte d wit h tw o peopl e wh o ar e blin d an d wh o have expertis e i n signage ; the y ar e enthusiastic . Yo u als o wan t railings alon g hal l walls fo r peopl e wh o nee d assistanc e i n walking . Again, rathe r tha n th e standard-issue , utilitaria n ADA-approve d railings, you'r e considerin g a combinatio n o f material s t o produc e functional equivalen t railing s tha t loo k an d fee l lik e decorativ e molding. You ar e working o n th e playgroun d design , i n consultatio n wit h teachers fro m a n inclusiv e elementar y school . I t will hav e feature s that promot e socia l interactio n an d cognitiv e development . Fo r instance, th e teacher s suggeste d pla y space s tha t encourag e childre n to fac e on e another , s o childre n wit h hearin g impairment s ca n watch th e hearin g children' s lip s an d follo w othe r visua l cues , o r 167

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where two childre n wh o us e sign language can tal k with eac h other . You want t o com e u p with space s fo r childre n wh o us e wheelchair s to transfe r t o platform s joine d b y shoots an d slides . You ar e think ing about a mapping syste m tha t wil l enable childre n who ar e blin d to find th e pla y areas . As with th e building , yo u wan t t o mak e th e map interestin g t o users ; something th e sighte d an d blin d childre n can us e together . The theate r woul d incorporat e wheelchai r seatin g i n ever y sec tion, s o wheelchai r user s ar e no t isolate d i n bac k rows . I t woul d also include a technical studi o where subtitles fo r films an d caption s for liv e performance coul d b e devised, a s well as audio descriptions . Your dilemma : th e city' s allocatio n provide s fo r acces s an d ac commodation base d o n a mode l tha t complie s wit h th e ADA , no t for th e feature s yo u ar e proposing. Further , th e funds fo r th e librar y cover acces s an d accommodatio n onl y fo r patrons , no t staf f an d performers. Yo u ha d reflexivel y gon e alon g wit h tha t thinkin g i n giving you r assen t whe n yo u shoul d hav e kep t you r min d ope n t o all concerned . Your presentatio n include s a rational e fo r you r desig n tha t yo u hope will appea l t o th e civi c leaders an d other s i n attendance . Wil l the rational e "speak " t o them ? Fo r instance , yo u describ e ho w th e integration o f th e Braille d informatio n i n a stuccoe d wal l relie f invites sighte d peopl e t o loo k an d touch , t o investigat e an d thin k about Braill e rathe r tha n ignor e i t a s somethin g no t fo r them . I n much th e sam e wa y tha t And y Warhol' s Campbell' s sou p can s o r Christo's wrappin g th e Reichsta g encourage s u s t o thin k abou t those element s i n a differen t way , everyda y element s o f lif e ca n b e made mor e availabl e an d interestin g t o sighte d peopl e a s well a s t o blind people . Eve n puttin g a sig n i n Braill e an d i n prin t o n th e wall tha t say s "Pleas e touch " alter s th e environment , an d suggest s to sighte d peopl e tha t touc h i s a n importan t mean s t o acces s beauty, information , an d ideas . Thes e combine d tactil e feature s provide a share d experienc e i n th e sam e wa y tha t th e step/slop e 168

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combined entrancewa y invite s ram p an d stai r user s t o trave l to gether, an d th e playgroun d space s encourag e disable d an d nondisa bled childre n t o pla y together . As a furthe r exampl e t o explai n you r motivation , yo u poin t ou t how America n Sig n Language , lon g considere d b y th e genera l public simpl y as a pragmatic solutio n t o th e "problem " o f deafness , has bee n incorporate d int o stage d performance s a s an aestheti c an d communicative element . Thi s has helped peopl e see it as interestin g and expressive . Yo u ar e suggestin g tha t a rethinkin g o f ramp s ma y be similarl y conduciv e t o a n enlarge d perspectiv e o n th e activ e participation o f disable d people . Further , yo u ar e suggestin g tha t not muc h creativ e energ y ha s bee n investe d i n ramp s no t becaus e they ar e no t a s interestin g a s step s bu t becaus e the y ar e associate d with disability . I n sayin g that , yo u allud e t o th e transformatio n i n thinking abou t women' s wor k an d women' s creativ e endeavor s both o f which hav e bee n considere d o f lesser meri t becaus e o f thei r association wit h a devalued group . I would lik e t o thin k tha t architect s with you r commitmen t an d expertise ar e graduating fro m universitie s afte r havin g been expose d to th e philosophica l underpinning s o f suc h environments , an d having acquire d th e desire d technica l expertis e t o desig n them . Although som e degre e holder s ma y fal l int o tha t category , I don' t believe tha t school s o f architectur e ar e consciousl y reshapin g thei r curricula t o prepar e architect s t o mee t thes e challenges . Courses in disabilit y studies could find a natural home i n school s of architecture . Fo r instance , a course coul d examin e th e histor y o f spaces tailore d fo r peopl e wit h disabilities—fro m institution s t o sheltered workshops , t o th e placemen t o f specia l educatio n class rooms i n schools—an d conside r th e aestheti c an d ideologica l state ments thes e spaces make . Another cours e migh t conside r th e archi tecture o f containmen t an d confinement , an d loo k a t institution s of all stripes, how the y comment o n thei r inhabitant s an d ho w the y comment o n th e relationshi p betwee n th e inhabitant s an d thos e 169

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outside. A cours e i n marginalize d group s an d marginalize d spaces , cross-listed i n department s o f architecture , geography , urba n plan ning, an d sociology , coul d examin e th e parallel s betwee n th e socia l status o f women , o f disable d people , an d o f member s o f th e eco nomic underclass , an d th e space s designe d fo r them . Text s suc h a s Leslie Kane s Weisman' s (1992 ) Discrimination by Design: A Feminist Critique of the Man-Made Environment tha t hav e bee n use d t o bring a gendere d readin g t o architectur e coul d b e include d wit h readings o n disabilit y t o investigat e th e propertie s o f th e "nondisa bled-made environment. " Weisma n point s ou t tha t "gender , race , class, occupation , an d othe r factor s lik e ag e an d disabilit y collec tively creat e distinctl y differen t spatia l experience s fo r people , eve n within th e sam e environmenta l setting " (40) . He r comment s abou t the imbalanc e i n number s o f bathrooms an d toilet s fo r wome n an d men ca n b e discusse d i n term s o f th e unavailabilit y o f accessibl e toilets fo r peopl e wit h mobilit y impairments . Course s tha t loo k a t disability reflectivel y rathe r tha n reflexivel y ca n hel p student s thin k in sophisticate d way s abou t environment s tha t invit e th e participa tion o f all people . A TRAVEL AGEN T

This i s a comparison o f two trave l agents . Let's us e me a s a possible customer. I trave l quit e a bit . I us e a wheelchair an d nee d t o hav e advance, practica l informatio n o n wha t await s m e i n regar d t o accessibility. Let' s sa y I'm goin g t o Ireland . M y cousi n ha s recentl y been ther e an d recommend s a n agen t sh e foun d reliabl e an d pleas ant, an d wh o know s o f man y interestin g out-of-the-wa y places . I call, and th e agen t say s to me , a s agents have done i n th e past, "O h dear, w e can' t hel p you . Yo u nee d on e o f th e specialize d trave l services fo r 'handicapped ' people ; the y wil l kno w wha t t o d o fo r you." Th e agen t migh t eve n thro w i n a gratuitou s commen t suc h as "Mayb e you' d b e mor e comfortabl e travelin g i n th e Unite d States; Irelan d doesn' t hav e al l th e moder n building s an d such. " 170

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Another agen t migh t say , "Tel l m e wher e yo u wan t t o go . I'l l b e glad t o arrang e you r trip , bu t i f i t turn s ou t tha t I can' t obtai n al l the informatio n yo u need , yo u ma y wan t t o find a mor e knowl edgeable agent. " In eithe r case , I might win d u p usin g a specialized trave l agency , and i t migh t tur n ou t t o b e a goo d solutio n becaus e suc h agencies have acces s t o information . I us e thes e example s no t t o weig h th e merits o f th e individua l agent s bu t t o analyz e th e proces s b y whic h my choice i s made. This may seem like a small moment, an d i t may appear that ther e are inconsequential difference s betwee n th e scenarios. However , th e tone and substance of the agents' responses are indicative of differin g ideas about disability. Whereas the first agent focuses on th e particu larity o f m y needs , th e secon d frame s he r respons e i n term s o f th e adequacy o f he r expertise . Th e first agent' s assumptio n i s tha t m y needs would b e take n car e of elsewhere; th e second's , tha t al l trave l agents have some responsibility to learn about acces s issues. Consider ho w thi s vignette could hav e used other type s of service providers o r professionals . Fo r instance , ca n a stor e owne r o r a gynecologist refus e m e service ? Th e personne l ma y b e pleasant , patronizing, o r nast y when the y refus e me . They ma y turn m e awa y because the y don' t wan t t o b e bothere d o r becaus e the y ar e trul y underprepared. Bu t th e outcom e i s that disable d peopl e hav e fewe r options, an d man y time s ar e left wit h n o options . How d o we, as a society, conceptualiz e thos e limited options ? As inevitable consequence s o f disability? As the result s o f the refusa l o f public an d privat e servic e provider s t o b e full y responsibl e t o th e public? W e ar e s o use d t o th e ide a tha t disabilit y i s a medica l condition tha t require s specialize d service s an d skill s tha t i t i s often har d t o conceptualiz e a provider's refusa l a s discrimination. I f someone wh o i s blin d o r use s a wheelchair come s int o a store , ca n the owne r refus e servic e an d tel l th e perso n t o leave ? I f a disable d woman want s t o becom e a patien t o f th e onl y gynecologis t i n he r 171 APPLICATIONS

vicinity wh o participate s i n he r medica l plan , ca n th e gynecologis t refuse t o accep t he r o n th e basi s o f lac k o f expertis e i n workin g with disable d women ? I s th e gynecologis t responsibl e fo r obtainin g the knowledg e sh e doe s no t have ? Are medica l school s responsibl e for trainin g physicians i n thes e areas? Are medical insurance provid ers responsibl e fo r payin g a n out-of-pla n expert ? I f th e woman' s disability doe s no t hav e a specifi c impac t o n he r gynecologica l o r obstetric need s an d henc e require s n o specifi c medica l expertise , i s the gynecologist' s refusa l mor e likel y t o b e considere d discrimina tory? Fo r instance , i f she has a visual impairment o r menta l retarda tion, ca n th e gynecologis t asser t tha t th e extr a tim e o r patienc e required i n working with he r i s the basi s fo r th e refusal ? Disabled peopl e can' t rel y o n th e goodwil l an d libera l outloo k of servic e provider s t o mee t thei r needs . Legislatio n mus t ensur e consistent provisio n o f servic e an d freedo m fro m discrimination . Legislators ar e dependen t o n researcher s an d theorist s t o determin e what constitute s discrimination , t o recogniz e ho w an d wher e i t occurs, an d t o develo p th e extralegislativ e mean s t o counterac t it . For instance , i n considerin g th e behavio r o f th e tw o trave l agents , on wha t basi s ca n w e determin e i f th e first agent' s respons e i s discriminatory? Wha t factor s com e int o pla y i n considerin g thi s issue? Th e importanc e o f travel , an d i f i t is , importan t fo r whom ? Are pleasure , leisure , an d recreatio n les s importan t tha n essentia l services such a s food an d medica l care ? In othe r words , i s it accept able for a travel agen t t o tur n someon e dow n bu t no t fo r a gynecologist t o d o so ? Thes e ar e comple x question s relate d t o theorie s o f entitlement, democracy , capitalism , an d th e obligatio n o f privat e enterprise t o serv e th e public—no t t o mentio n th e ethica l aspect s related t o what a society deem s righ t o r wrong behavior . THE DIRECTO R O F AN INDEPENDENT LIVIN G CENTE R

A disabled woman with a n undergraduat e degre e in political scienc e and som e graduate course s in socia l work, yo u ru n a n independent 172

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living cente r i n a midsize d cit y tha t employ s twenty-fiv e people , some full-tim e an d som e half-time . I n additio n t o providin g direc t services t o disable d peopl e i n th e area , th e cente r ha s bee n involve d in initiative s relate d t o disabilit y issues . Yo u hav e bee n a n outspo ken, articulate , an d informe d spokesperso n fo r you r disabilit y com munity. One da y th e mayor' s assistan t inform s yo u tha t yo u hav e bee n appointed t o a pane l o f representative s o f constituenc y group s a t the Nationa l Conferenc e o f Mayor s i n Washington , D.C . Th e panel, expecte d t o ge t muc h medi a attention , i s t o addres s in tergroup relations , an d overlappin g an d competin g concern s o f constituency groups . As yo u conside r th e assignment , yo u realiz e tha t althoug h yo u are knowledgeabl e abou t disabilit y issues , yo u fee l unprepare d t o place thos e issue s i n a large r context . You r experienc e ha s bee n largely applied an d largel y local. You hav e learned disabilit y histor y through you r wor k an d a fe w books . You r on e disabilit y studie s course i n colleg e wa s a surve y course ; non e o f you r othe r socia l sciences o r humanitie s course s helpe d yo u t o plac e disabilit y i n th e context o f othe r civi l right s issues , othe r identit y issues , o r othe r social an d politica l issues . How ca n you begi n t o conceptualiz e an d help other s t o thin k abou t th e relationshi p o f disabilit y t o race , class, an d gender ? Ho w ca n yo u articulat e issue s o f powe r an d privilege an d th e statu s o f nondisable d people ? Ho w ca n yo u dem onstrate wh y disabilit y representatio n i s neede d i n group s tha t formulate policy ? Ho w ca n yo u ge t peopl e t o generaliz e wha t the y know abou t race , gender , sexual-orientation , an d clas s discrimina tion t o th e processes tha t exclud e disable d peopl e fro m civi c life ? Switch role s an d conside r ho w you , a s thi s woman' s colleg e professor, migh t hav e helpe d la y th e groundwor k fo r thi s moment . In whic h course s migh t i t hav e bee n usefu l fo r he r t o "wor k through" idea s abou t disability ? Certainl y fo r th e Washington pan el's presentation , course s i n politica l scienc e an d sociolog y whos e 173

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syllabi incorporate d disabilit y perspective s int o discussion s o f com munity, constituenc y groups , democracy , an d th e welfar e stat e would b e a goo d start . Yet , eve n thoug h tha t migh t hav e provide d some nut s an d bolts , a more comprehensiv e approac h an d a deepe r analysis ar e warranted . Fo r instance , th e center' s directo r migh t have been helpe d b y a course o n feminis t inquir y an d socia l chang e in which th e ways tha t researc h ca n bot h serv e activist agenda s an d contribute t o academi c inquir y ar e discussed . Ther e sh e ma y hav e been encourage d t o writ e a pape r o n th e applicatio n o f researc h t o disability issue s an d t o brin g ou t som e relevan t example s i n clas s discussions. Wit h th e hel p o f th e teache r an d students , sh e woul d have begun t o thin k abou t th e mean s availabl e t o addres s disabilit y "problems." I n a cours e i n ga y an d lesbia n studies , th e professor might hav e discussed th e parallels between th e formation o f identit y of lesbia n an d ga y young peopl e an d o f disable d youn g people . I n growing up , thes e youngster s ofte n struggl e t o establis h identit y because thos e aroun d the m hav e littl e informatio n on , an d man y times ca n b e hostil e toward , th e cultura l specific s o f bein g ga y o r being disabled . Suc h a n introductio n migh t hav e helpe d he r thin k about th e overlappin g need s o f lesbian/ga y an d disable d groups . Any othe r cours e tha t discusse d socia l constructio n an d include d disability amon g th e constructe d categorie s woul d certainl y hav e helped he r focu s o n socia l contingencie s rathe r tha n th e individua l nature o f disability , a n asse t whe n thinkin g abou t disable d peopl e as a constituency group . What i f th e presentatio n i n Washingto n goe s wel l an d yo u decide t o pursue a doctorate tha t would prepar e you t o thin k abou t and ac t o n nationa l disabilit y issue s ful l time ? I f yo u g o t o forme r professors fo r advice , ho w wel l prepare d will the y b e t o stee r yo u toward a meaningfu l program ? D o program s exis t t o appl y to ? I myself would sugges t tha t yo u joi n th e Societ y fo r Disabilit y Stud ies and atten d th e annual conferenc e t o networ k with facult y teach ing disabilit y studies. 1 Althoug h ther e ar e n o doctora l program s 174 APPLICATIONS

that I believ e would specificall y prepar e you i n disabilit y polic y an d activism, ther e ar e a numbe r o f institution s wher e yo u migh t pur sue a degre e i n a relate d area , wit h a concentratio n o f course s i n disability studies. 2 You may have been actively thinking about disability throughou t your colleg e career , bu t i f th e curriculu m di d no t specificall y ad dress it , yo u ma y hav e com e t o believ e a t som e leve l tha t disabilit y is no t relevan t t o th e stud y o f literature , sociology , o r politica l science. I t ma y hav e bee n difficul t fo r yo u t o rais e question s abou t disability i n classe s becaus e th e facult y wer e unreceptiv e o r becaus e of your discomfor t wit h othe r students ' reactions . I t i s the faculty' s responsibility t o ope n u p discussio n o n disability , eve n whe n stu dents ar e alread y motivate d t o thin k abou t disability . Otherwise , i t will remai n invisibl e an d increasingl y problemati c i n it s invisibility . PROGRAM DIRECTO R

For a numbe r o f year s yo u hav e bee n th e directo r o f a servic e organization providin g da y program s t o peopl e wit h physica l disa bilities an d menta l retardation . Th e organization , whic h ha s mor e than on e hundre d employees , i s workin g well . Donation s ar e up , programs suc h a s th e sheltere d workshop , th e socia l activities , an d the educationa l program s hav e attracte d nationa l attentio n becaus e they ar e see n a s innovativ e b y professiona l group s an d ar e well attended. However, th e Disability Rag, a disabilit y right s quarterly , pub lishes a scathin g piec e o n th e organizatio n an d you r directorship . The writer assert s that th e programs d o no t prepar e disable d peopl e for outsid e employmen t an d d o no t foste r independen t living . Further, tha t yo u an d th e staff , wit h ver y fe w exceptions , ar e nondisabled; exception s hol d low-leve l jobs , an d the y hav e n o sa y in ho w th e organizatio n i s run . Moreover , th e Boar d o f Director s has neve r ha d a member wh o wa s disabled . The write r acknowledge s tha t man y o f th e peopl e wh o atten d 175 APPLICATIONS

the program s hav e menta l retardatio n an d don' t hav e th e typ e o f professional trainin g that would prepar e the m fo r managemen t job s but contend s tha t othe r disable d peopl e i n th e communit y woul d qualify bu t hav e no t bee n hired . Additionally , th e organizatio n could facilitat e th e participatio n o f peopl e wit h menta l retardatio n in plannin g an d decisio n making . Th e write r als o criticize s th e organization's fund-raisin g activities , such a s last year's bike-a-thon , which yo u perceive d a s a hug e success , fo r havin g exclude d peopl e who canno t rid e bikes , and henc e mos t progra m participants . Onl y two o f th e day-progra m participant s wer e invite d t o th e evenin g ceremony followin g th e event . The y wer e seate d a t th e hea d table , but speakers , usin g onl y firs t names , tol d th e audienc e ho w muc h each o f the m like d th e da y program . Th e participant s wer e no t given a chanc e t o voic e thei r opinion s directl y bu t late r tol d th e reporter simpl y bu t clearl y abou t thei r discomfitur e an d wer e criti cal of the cente r an d staff—comment s tha t appeare d i n th e article . It i s likel y tha t yo u an d th e administrativ e staffer s hav e degree s in rehabilitatio n o r specia l education . Yo u hav e devote d you r live s to workin g wit h peopl e wit h disabilities . Ye t yo u find , whe n th e article i s discusse d a t th e staf f meeting , tha t you r academi c back ground an d professiona l experienc e hav e i n n o wa y prepare d yo u for th e moral , political , an d intellectua l challeng e th e controvers y presents. To compoun d you r problem , th e ombudsperso n hire d b y you t o represen t participants ' interest s ha s rea d th e articl e t o a group an d explaine d a numbe r o f th e point s t o them . Tha t grou p has asked t o spea k with you . What migh t hav e prepare d yo u an d th e staf f fo r thi s moment ? How migh t you have anticipated som e of these criticisms, and wha t might hav e motivate d yo u t o chang e th e practice s lon g befor e th e article appeared ? O f course , agency personnel migh t no t experienc e the articl e a s a threa t t o conscienc e o r practices . Yo u al l ma y b e convinced tha t you r intention s an d behavio r ar e exemplar y an d that th e criticis m i s of a "political " natur e an d outsid e th e real m o f 176

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professional conduct . Yo u ma y no t heretofor e hav e encountere d any idea s tha t woul d challeng e th e benevolenc e an d humanitaria n concern tha t yo u believ e guide your endeavors . Academic program s designe d t o prepar e student s t o wor k wit h disabled peopl e hav e a particula r responsibilit y t o evaluat e thei r own philosoph y an d thei r ow n practic e wit h respec t t o th e issue s discussed i n thi s vignette . Fo r instance , colleg e student s ma y hea r in thei r classe s tha t inclusio n i n publi c educatio n i s a goo d thin g but observ e tha t genera l educatio n an d specia l educatio n ar e sepa rate department s i n th e institution s the y ar e attending . Accord ingly, the y ar e no t bein g prepare d t o wor k i n inclusiv e classrooms . Some o f thei r professor s ma y giv e a n occasiona l lectur e o n th e importance o f th e ADA , an d th e histor y o f discriminatio n an d oppression o f peopl e wit h disabilitie s i n thi s country , ye t student s may not e tha t ther e i s only on e facult y membe r wit h a disability i n their department , tha t onl y a fe w o f thei r professors hav e joine d a group t o pressur e th e universit y t o mak e th e campu s mor e accessi ble, or tha t a faculty membe r i n specia l education refuse s t o provid e extra tim e o n a n exa m fo r a studen t wh o ha s a learnin g disability . These disjuncture s betwee n th e over t an d th e cover t curriculu m may mak e i t mor e difficul t fo r student s t o integrat e an d ac t o n personal an d socia l change. Bot h disable d an d nondisable d student s may b e influence d b y thi s hidde n curriculum , bu t th e particula r tragedy fo r disable d student s i s tha t the y ma y internaliz e th e mes sage tha t disabilit y leadershi p an d equalit y ar e no t tha t important , even, o r mos t conspicuously , i n department s o f specia l educatio n and rehabilitation . Students migh t ge t a differen t messag e i f the y observe d thei r department developin g a n explici t affirmativ e actio n polic y an d inclusion polic y an d the n pressurin g fo r university-wid e adoption . If students observe d a department providin g disable d student s wit h the suppor t neede d t o becom e professional s an d t o assum e leader ship roles , the y migh t lear n mor e directl y tha t i t i s importan t t o 177 APPLICATIONS

perpetuate independenc e an d leadershi p whe n the y becom e direc tors o f da y programs . I f professors conducte d outreac h effort s t o attract disable d student s an d wrot e grant s fo r scholarship s fo r disa bled students , the y woul d demonstrat e t o student s tha t the y valu e disabled people' s succes s an d participation . I f the facult y refuse d t o participate i n planning conference s o r research projects o n disabilit y unless disable d peopl e ar e a significan t portio n o f th e team , stu dents woul d lear n tha t thei r teacher s ar e willin g t o practic e wha t they preach . I f facult y lobbie d fo r th e participatio n o f disable d people an d o f peopl e wit h expertis e i n disabilit y studie s i n college wide curriculu m projects , student s migh t lear n tha t disabilit y stud ies i s par t o f diversit y an d multicultura l agendas . If department s of specia l educatio n an d rehabilitatio n offere d regularl y schedule d courses in disabilit y studies, students would find a n excellen t sit e t o challenge establishe d belief s an d practice s an d t o conside r thei r ow n ideas abou t disabilit y a s a socially constructe d category . I f student s saw specia l educatio n an d genera l educatio n facult y workin g to gether o n a n inclusiv e teacher-educatio n curriculu m the y migh t learn ho w t o creat e inclusiv e classroom s an d school s onc e the y graduate. You, a s th e progra m directo r describe d here , ma y no t hav e realized when yo u hire d th e ombudsperso n or , whe n yo u agree d t o let th e write r fro m th e Rag visi t you r organization , tha t you r decisions would precipitat e thi s critical moment . Yet , you're sur e t o recognize tha t eve n i f thi s blow s over , othe r peopl e coul d disrup t the smoot h flow o f event s i n th e future . A ne w participan t ma y transfer int o th e program fro m a different city . She may come fro m a grou p hom e wit h a n assisted-employmen t program , wher e sh e worked i n th e communit y wit h occasiona l suppor t fro m a jo b trainer wh o monitore d he r work weekly. Sh e ma y hav e gotten use d to th e autonomy , freedom , an d income , an d ma y resen t th e newl y imposed limitations . Sh e ma y urg e th e othe r participant s t o atten d an administrativ e meetin g an d spea k u p abou t problem s i n th e 178 APPLICATIONS

center. It' s als o possibl e tha t a n employe e migh t oppos e curren t practice, base d o n differin g view s abou t wha t constitute s disable d people's rights . Thes e kind s o f confrontation s ar e th e outcom e o f paternalistic system s tha t see k t o "car e for " disable d peopl e rathe r than suppor t integratio n an d accommodatio n i n th e community. I f service provider s ar e perceive d a s arrogan t o r superciliou s b y disa bled people , eve n i f thei r intentio n i s t o b e supportiv e an d t o facilitate growth , w e nee d t o reexamin e bot h th e structur e o f ou r institutions a s wel l th e academi c preparatio n o f peopl e wh o staf f them. A PAREN T

You ar e a paren t o f a nondisable d youn g woma n awa y a t college . She calls to tel l you she' s bringin g hom e a young ma n who m sh e is dating; he' s "terrific , nice , smart , funny , an d accomplishe d an d ha s cerebral palsy. " Sh e tell s yo u h e use s a wheelchai r an d ask s i f yo u can get a larg e boar d h e ca n us e a s a ram p t o ge t int o th e house . She say s hi s speec h i s sometime s har d t o understand , bu t she'l l b e there an d she' s gotte n s o use d t o it ; sh e understand s prett y muc h everything. When yo u han g u p th e phone , a flood o f feelings an d memorie s rush in . Yo u recal l sittin g aroun d th e kitche n tabl e twent y year s ago wit h you r brothe r an d you r parents , a s you r brothe r patientl y explained tha t h e wa s gay , tha t tha t wasn' t goin g t o change , an d that h e hope d tha t the y woul d lov e him , accep t him , an d accep t his partner . Yo u wonde r whethe r yo u will b e ope n t o acceptin g your daughter' s partner , a s yo u onc e hope d you r parent s woul d accept you r brother's . Yo u als o recal l tha t whe n you r daughte r wa s in kindergarten , a famil y move d i n nex t doo r wh o ha d a disable d child name d Rosie . Yo u fough t alon g wit h the m t o ge t th e loca l school t o se t u p a n inclusiv e classroo m tha t sh e coul d join . You r daughter an d Rosi e becam e friends , rod e th e schoo l bu s together , and attende d eac h other' s hig h schoo l graduatio n parties . Thes e 179 APPLICATIONS

memories an d th e pleasur e yo u recal l takin g i n you r principle d positions i n eac h o f thes e event s di d no t prepar e yo u fo r you r disquiet an d disma y a t th e prospec t o f you r daughter' s datin g someone you anticipat e feelin g sorr y for an d uneas y around . You recogniz e tha t you r feeling s migh t chang e onc e yo u mee t him, bu t yo u als o fear tha t the y may no t an d tha t yo u ma y have t o face th e repercussion s o f bein g hones t o r o f bein g dishones t whe n you se e you r daughter . Yo u fin d yoursel f thinkin g abou t th e sam e kinds o f concern s you r parent s voice d t o yo u abou t you r brother , about ho w th e res t o f th e famil y woul d perceiv e hi m an d abou t how he would b e an outcas t i n society . You realize d the n tha t thes e fears wer e a projectio n o f you r parents ' persona l feeling s ont o others, an d no w yo u find yoursel f runnin g fro m you r ow n feeling s by attributing you r ow n anxietie s t o others . You kno w tha t yo u ar e concerned abou t you r daughter' s well-being , an d wha t yo u fea r ar e her emotiona l an d physica l burden s i f sh e marrie s a ma n wit h disabilities. O n a deeper leve l you ar e aware that yo u hav e difficult y accepting tha t an y man, an d no w you realiz e thi s ma n i n particula r will be havin g se x with you r daughter , an d simultaneousl y yo u fea r that i f your daughte r marrie s thi s man , sh e ma y no t hav e children . A questio n tha t need s t o b e considere d her e i s whethe r an y curriculum, 3 eve n on e wit h a ful l complemen t o f disabilit y studie s material, ca n alte r persona l feeling s suc h a s yours . I f you , a s th e parent describe d here , hav e mad e effort s t o reduc e th e ableis t practices i n societ y bu t dra w a lin e whe n persona l commitment s are a t stake , ca n w e conside r you r reactio n ableis t an d ca n curricu lum chang e suc h reactions ? I t i s a questio n tha t i s aske d abou t racist, sexist , an d homophobi c feelings. Ar e thes e persona l feeling s and behavior s amenabl e t o chang e b y academi c mean s o r bes t lef t to intervention s aime d a t individual s o r a t socia l structures ? Also , are ableism , racism , sexism , an d heterosexis m paralle l issues ? I f so , and curricula r chang e i s implemente d t o addres s them , woul d th e curricula hav e similar form , albei t som e differin g content ? 180

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Of course , I can' t sa y fo r certai n whethe r you , a s th e parent , would o r woul d no t b e aide d b y course s i n disabilit y studies . I suspect tha t suc h previou s exposur e migh t prepar e yo u fo r thi s internal struggle , i f onl y t o th e exten t tha t yo u woul d hav e ha d practice thinkin g consciousl y an d deliberatel y abou t disability . Ob viously, muc h mor e tha n curricula r chang e i s neede d t o alte r suc h deeply hel d beliefs . Therefore , thos e o f u s wh o ar e outsid e th e experience nee d a n educatio n i n disabilit y a s well . Anyon e at tempting t o thin k about , writ e about , an d analyz e suc h a moment , whether i n teachin g philosophy , writin g a movi e script , reportin g for a newspaper , o r counselin g a paren t a t th e loca l famil y center , or anyon e wh o ca n potentiall y shap e thi s momen t woul d benefi t from exposur e t o disabilit y studies . What i f you were th e young ma n abou t t o mee t your girlfriend' s parents? Wha t migh t hel p yo u t o prepar e fo r thi s meeting ? I f yo u anticipate o r encounte r hostility , pity , disgust , mawkishness , o r awkward oversolicitousnes s i n thes e peopl e who m yo u wan t t o ge t to know , wan t t o hav e lik e you, wha t woul d prepar e yo u no t t o b e defensive o r t o personaliz e th e parents ' response ? Although , again , your self-confidence , self-awareness , an d socia l abilitie s migh t see m to b e psychologica l variables , I ca n thin k o f a hundre d way s tha t a course i n disabilit y histor y o r a literature clas s analyzing representa tions o f disabilit y migh t mak e yo u mor e resilien t t o th e parents ' interpretation o f you . Mayb e you coul d hav e taken a general libera l arts film cours e wit h a professo r wh o incorporate d disabilit y per spectives int o it s content. Perhap s th e professor showe d Guess Who s Coming to Dinner? an d aske d th e student s t o writ e paper s o n various alternativ e version s o f th e film. Rathe r tha n Katherin e Ross's bringin g hom e a "Negro, " sh e ma y hav e invite d someon e o f a differen t socia l class , o r a woman wit h who m sh e was i n love , o r someone wit h a disability . Woul d th e parents ' respons e hav e bee n different o r th e same ? What if , i n additio n t o suc h courses , ther e ha d bee n a disable d 181

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students' cente r a t th e university , buil t o n th e concep t o f disabilit y culture an d ru n b y disable d students ? Wha t i f you ha d organize d a leadership trainin g workshop o r a n outwar d boun d program , wher e disability prid e an d disabilit y leadershi p skill s wer e taught—migh t that no t bolste r you r interna l resilience ? Woul d yo u b e helpe d b y forming friendship s wit h othe r disable d peopl e you r ag e o r olde r who coul d tel l you ho w the y ha d fare d i n socia l encounters ? Thes e are lesson s tha t you r family , i f the y ar e nondisabled , an d you r nondisabled friend s ma y no t hav e much experienc e with . Colleges an d universitie s hav e i n th e pas t refuse d t o admi t disa bled wome n an d men , somethin g the y ar e no t no w permitte d t o do, an d the y no w mus t provid e acces s an d accommodation . Ye t they incu r n o lega l sanction s i f the y don' t tel l th e trut h abou t disability. Tha t i s up t o the m t o decide . Fo r eac h disciplin e o r are a of stud y ther e ar e specifi c truth s t o b e told . An d specifi c lies . A li e that literatur e tells ca n b e hear d i n th e metaphor s tha t creat e analogies betwee n disabilit y an d insentience , o r evil , o r ineptness . Psychology tell s lie s whe n i t reifie s throug h theor y an d measure ment th e concep t o f normal . Anthropology' s lie s ar e foun d i n th e construction o f a culture' s idea s abou t disability , base d solel y o n nondisabled people' s input . Histor y tell s lie s when i t eliminate s th e perspectives o f disable d people , an d othe r marginalize d people , from th e annal s o f history , o r eliminate s informatio n o n publi c figures' disabilities . Women' s studie s lie s whe n i t exclude s disable d women's perspectives , and the n proceed s t o mak e globa l statement s about women' s feeling s an d experience . Educatio n proffer s th e ide a that disable d an d nondisable d childre n ar e separat e group s bes t taught i n separat e classroom s b y teacher s separatel y trained . Th e lies tol d b y clinica l psycholog y an d counselin g ar e similar : disable d people's need s and problem s ar e sufficiently differen t fro m nondisa bled people' s tha t specialists , calle d rehabilitatio n psychologists / counselors, ar e neede d t o trea t them . Sociolog y fabricate s a center , and the n create s th e concep t o f deviance t o reinforc e th e centralit y 182

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of nondisable d people . Medicin e tells lie s whe n i t reduce s differ ences t o deficits , deficiencies , o r pathologies . Thes e ar e amon g th e more obviou s problems . Disability studie s tells a differen t story . It s tenet s nee d t o b e worked throug h ever y disciplin e an d field t o assess their validit y and applicabilit y t o a rang e o f intellectual , social , political , an d moral question s tha t w e a s a society face . Th e "truths " o f disabilit y studies will be revealed a s we see how compromise d th e answer s ar e without thi s perspective . NOTES

1. Th e Societ y fo r Disabilit y Studie s i s a nationa l organizatio n o f scholars and activists. For information o n the organization, write to Society for Disabilit y Studies , Departmen t o f Publi c Management , Suffolk University , 8 Ashburto n Place , Boston , Massachusett s 02108. Fo r information o n th e journal Disability Studies Quarterly, write t o Cente r fo r Disabilit y Studies , Universit y o f Hawai i a t Manoa, 177 6 Universit y Avenue , U A 4-6, Honolulu , Hawai i 96822. 2. A n articl e b y Pfeiffe r an d Yoshid a (1995) , "Teachin g Disabilit y Studies i n Canad a an d th e USA, " list s som e o f thos e institution s and the courses taught. 3. Man y peopl e d o no t g o t o colleg e an d wil l no t hav e acces s t o th e academic curriculu m I a m promoting . M y focu s i n th e boo k ha s been on higher education curriculum , bu t I believe that elementar y and secondar y school s wil l benefi t fro m thes e idea s a s well . I n some ways, elementary schools have been addressing disability more deliberately tha n highe r educatio n ha s done . Althoug h ther e ar e problems wit h tha t presentation—se e chapte r 4—schools hav e still attempted, throug h puppets , stories, American Sign Language demonstrations, an d discussion s abou t ne w childre n wh o wil l b e in cluded in the classroom, to talk openly about disability.

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8

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SOCRATES: S

o i t wa s a s a resul t o f thi s profoun d discover y about hi s ar t tha t Tisia s wrot e tha t i f a brav e pygm y i s prosecuted fo r assaultin g a cowardl y gian t an d robbin g hi m of hi s clothe s neithe r o f the m shoul d revea l th e truth . Th e coward mus t declar e tha t h e was attacked b y more tha n on e man, wherea s hi s opponen t mus t maintai n tha t n o on e els e was presen t an d fal l bac k o n th e well-know n line : "Ho w could a littl e cha p lik e m e hav e se t upo n a colossu s lik e him?" Th e othe r o f cours e wil l no t admi t hi s ow n poo r spirit, bu t wil l produc e som e furthe r li e which ma y provid e his adversar y wit h a chanc e o f trippin g him . An d i n othe r cases to o thes e ar e th e sor t o f "scientific " rule s tha t ar e enunciated. Isn' t i t so Phaedrus? Plato , Phaedrus

C

ovenants o f th e typ e Socrate s describe d depen d o n bot h parties* agreein g t o confor m t o socia l expectations , an d de pend o n thos e witnessin g th e pac t t o suspen d critica l judgment . Socrates understoo d tha t sometime s th e trut h i s kep t secre t i n or der no t t o upse t th e socia l order . Th e orde r rest s o n a simplifie d and reassurin g versio n o f th e world . I f giant s canno t b e counte d on t o b e strong , an d pygmie s t o b e vulnerabl e an d weak , w e hav e to entertai n th e possibilit y o f greate r complexit y an d contradic tion i n al l manne r o f othe r idea s a s well . Indeed , wha t i s compel ling fo r m e abou t Plato' s tale , i s no t th e moralit y fabl e abou t th e

hidden strength s o f th e weake r member s o f society , i t i s th e tendency towar d orde r an d simplicit y o f though t tha t human s exhibit. The introductio n o f disabilit y studie s int o academi c discours e i s more significan t a s problematizin g agen t tha n a s parabl e fo r th e forgotten an d downtrodden . I t is , of course , o n on e leve l th e voic e of th e pygmy , ma d a s hel l an d no t willin g t o pla y th e victi m anymore. Bu t i t is more significantl y th e voice of the crowd, matur e enough t o tak e o n th e comple x an d difficul t jo b o f reorderin g society. Stephen Greenblat t (1994 ) note s tha t thos e wh o uphol d th e traditional literar y cano n wan t a "tam e an d orderl y canon . Th e painful, mess y struggle s ove r right s an d values , th e politica l an d sexual an d ethica l dilemma s tha t grea t ar t ha s take n upo n itsel f t o articulate an d grappl e with , hav e n o plac e i n thei r curriculum " (290). A s currentl y rendered , th e academi c curriculu m devote d t o disability i s neatl y boun d i n th e specialize d applie d fields o r i n pathologizing construct s foun d i n a few isolate d spot s i n th e res t o f the curriculum . Similarly , societ y a t larg e ha s attempte d t o kee p disabled peopl e i n segregate d school s an d classrooms , institutions , back rooms , attics , and sheltere d workshops . Hidden an d disregarde d fo r to o long , w e ar e demandin g no t only right s an d equa l opportunit y bu t ar e demandin g tha t th e academy tak e o n th e nettlesom e questio n o f wh y weV e bee n se questered i n th e first place . For , i n disregardin g disabilit y a s subjec t matter, disable d peopl e a s subjects, an d disable d people' s subjectiv ity, academic s hav e bee n complici t i n tha t confinement . Ye t eac h of thes e elements , worke d throug h th e curriculum , ca n serv e no t only t o liberat e peopl e bu t t o liberat e thought . Disabilit y studie s introduces contradictio n int o th e polarize d categorie s o f wea k an d strong, norma l an d abnormal , revere d an d reviled , dependen t an d independent, expendabl e an d essential . I t reveal s thes e a s fals e dichotomies, an d reveal s th e epistemologica l underpinning s o f th e 185 EPILOGUE

privileged positio n i n eac h pair . Othe r fields hav e describe d th e consequences of the splits between public and private, personal and political, mind and body, or biological and social. Disability studies demonstrates ho w suc h compartmentalizatio n ofte n serve s som e groups better than others but ultimately serves no one well.

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INDEX

Ableist/ableism, 9 , 35, 66, 72, 93, 119 , 144, 145, 152 , 180 Academic curriculum, 1 , 2, 4, 7, 24, 71-72, 74, 81, 86, 88, 91, 93-115, 127 , 129, 133, 14 2 Afflicted witk 26-27 Americans with Disabilities Act, 32-33n. 2, 78, 165 , 167 , 17 7 Applied fields,2, 77-80, 80-84, 113 , 115, 123, 125 , 133 , 134-137, 141 , 145-147 , 148-149, 15 1 Belief systems, 42-43, 47, 48, 101 , 109, 112

Berube, Michael, 50-51, 11 4 Brown vs. Board of Education,63 Canguilhem, Georges, 30-31 Citizenship, 36, 48, 56, 57 Class, 32, 37, 88-90, 111-112 , 119 , 129 Colonialism, ideas about, 92, 104-105 , 14 1 "Coming out," 21 Crippled/crip, 9 , 16-17 , 11 1 Davis, Lennard J., 22-23, 12 5 Determinism, 25, 67, 98-101, 112-115 , 134, 136 , 142-14 5 Dis-, 29-32

Disability: definitions of , 6 , 8-9, 10-11 , 22, 87, 92, 95, 129-130; identity, 5 , 10, 12, 13 , 64, 92-93, 150-151 , 153, 174; individual model of, 6 , 11 , 19, 22, 53, 97, 106 , 107 , 134-135, 137 , 138 , 141, 143, 145 , 151 ; medicalization of , 2 , 8, 10-11, 12 , 31, 46, 48-50, 74, 76, 83, 86, 87, 98, 106, 133, 134, 139 , 145147, 148 , 149; representation of , 4 , 25, 66-68,78,93, 112-113 , 114-115, 119, 125, 126 , 128-130, 142 , 148, 161 ; social construction of , 2 , 4, 6, 31, 32, 64, 72, 76, 87, 97, 108-109 , 117 , 134, 150 151, 174 , 178 ; social-political model of , 2, 4, 10-11 , 12 , 32n. 2, 37, 69, 72, 8687, 132-133 , 136 , 141 , 148 Disability community, 5 , 12 , 13, 17, 31 , 103-104, 10 6 Disability culture and history, 5, 7n. 2, 37, 86,102-104,106,107,116n. 4,147,15 8 Disability rights, 5, 7, 10 , 11, 13, 19, 62, 69, 72, 82, 119 , 125, 131, 136, 138, 146, 149 Disability studies: in the academy, 1 , 2-3, 4, 32, 72, 81-82, 83, 87, 89, 90, 91, 115, 119 , 127, 129-130 , 133-136 , 158 159, 185 ; definition o f the field, 2-3, 4, 6, 12 , 13,72, 117-119 , 125 , 126, 132 133, 145 ; resistance to, 4, 7, 83, 88-93, 104 Disabled people: as minority group, 5, 86, 107, 118 , 150-151; oppression an d discrimination, 3, 9, 13 , 17, 31-32, 34-36, 72, 73, 92, 113-114 , 121-122 , 125, 130, 138 , 143, 177 Diversity/multicultural curriculum , 88-93, 135,178 Education, 21, 36, 52-70, 76, 80-81, 83, 85, 88-89, 124 , 134 , 136 , 157-15 8 Epistemology of inclusion, 81, 135, 156 -ette, 29-3 1

Euthanasia, 43-44, 78, 115n . 1 , 121 Everyone Here Spoke Sign Language, 64-67 Foucault, Michel, 11 8 Freak, 3 , 17 , 52, 161 Gates, Henry Louis, Jr., 20, 88, 91-92, 115-116n.2 Gender, ideas about, 9, 31-32, 35, 37-38, 47-48, 74, 86, 88, 89-90, 94-95, 100 101, 106 , 109-110, 111-112 , 118 , 119, 126, 127 , 129, 142 , 144, 151-152, 165 166,170, 18 0 Gill, Carol, 12-13 , 86, 154-15 5 Glass ceiling, 35-3 6 Gould, Stephen Jay, 74, 75-76, 108 , 118 Groce, Nora, 40, 64-67, 108-10 9 Hahn, Harlan , 32n. 1 , 143 Hanks, Jane, 37-70, 10 4 Hanks, L. M., 37-70, 10 4 Hockenberry, John, 67-68, 102-10 3 Hubbard, Ruth, 118-11 9 Humanities, 87, 110-115 , 123 , 125, 130, 135, 142 , 147-14 8 Hyper-lhypo-, 30-31 Impairment, 12 , 95, 135, 136-141, 149, 151 Independent living , 50, 68-69, 70n. 3, 139, 149 , 172-17 5 Infanticide, 40-43 , 50, 108 Institutions, 3, 29, 36, 40, 41-42, 46, 4850, 55, 56, 105, 125 "Invalid," 3, 28-29, 95 Keller, Evelyn Fox, 93-95, 120-12 1 Kliebard, Herbert M. 1 , 125-126, 13 0 Lesbian and gay perspectives, 23-24, 32, 35, 84 , 88-89, 103 , 109-110, 18 0 Liberal arts, 2, 77-80, 83, 84-88, 93-110,

202 INDEX

123, 133-134 , 135 , 136 , 137-138 , 141 142, 146 , 147 , 148-14 9 Linton, Simi, 80, 86, 121 , 13In . 1 Longmore, Paul, 32n. 1 , 48, 107 , 118 , 138 , 156n. 1 Mairs, Nancy, 11 4 McClintock, Barbara , 93-95, 96-97 , 120 121 Mello, Susan, 80, 121 , 131 n. 1 Messer-Davidow, Ellen , 79, 15 2 Metaphor, 16 , 87, 93, 110 , 125-130 , 142 , 148 Minnich, Elizabeth Kamark, 1,31 , 77-78 , 89-90, 126-128 , 130 , 131n . 2 Modernism, 45-51, 87, 96, 105 , 108 , 122 123 Nazi Germany, 16 , 39-40, 44 Non-disabled position , 13-14 , 20, 24, 31, 32, 38, 51, 53-54, 57-59 , 63, 70, 94, 100, 104 , 105 , 110-111 , 124 , 140 , 145, 152-153, 17 0 "Normal7"abnormal," 6 , 11 , 22-25, 30, 34, 62-63, 73, 84-86, 125 , 14 4 Oliver, Mike, 6, 75, 155-15 6 O'Neill, John, 80, 121 , 13In . 1 Outcast status, 39, 44-45, 46 Overcoming, 17-22 , 143 , 14 4 Passing, 17-2 2 Pathologizing of disability, 6, 11 , 30-31, 76, 85, 86, 87, 92, 115 , 125 , 134 , 140, 144, 148 , 18 5 Patient, 28-29 , 87 , 105 , 135 , 140 , 14 6 Physically challenged, 14-1 5

INDEX

Physician-assisted suicide . See euthanasia Pleasure, 82, 110-113 , 118 , 13 0 Race, ideas about, 9, 18 , 31-32, 35, 37-38, 47-48, 74 , 75-76, 88 , 89-90, 111-112 , 119, 129 , 142 , 144,165-166 , 18 0 Research methods, 6, 24, 72-76, 87 , 90, 94, 97-98, 99 , 101-102 , 104 , 107-110 , 115, 134 , 140 , 142 , 144-145 , 147-148 , 153-156 Rousso, Harilyn, 86, 156n . 1 Sacks, Oliver, 140-14 1 Scheer, Jessica, 40, 108-10 9 Sedgwick, Ev e Kosofsky, 23-24 , 12 4 Sexuality, 110-113 , 118 , 13 0 Shakespeare, Tom, 14 1 Shame, 3-4, 21-22 , 24, 99, 11 3 Society for Disability Studies, 139 , 154, 174, 183n . 1 Sontag, Susan, 118 , 12 6 Special, 14-1 6 Suffering from,26-27 Tavris, Carol, 73-74, 14 4 Thomson, Rosemari e Garland, 24, 52, 90, 125, 126 , 128-129 , 144 , 156n . 1 Victim, 25-26, 112-11 3 Waxman, Barbara Faye, 86 Wheelchair(s), idea s about, 20-21, 27-28, 95 "Whiteness," 13-14, 15 3 Young, Iris Marion, 35, 11 9

203

ABOUT TH E AUTHOR

SIMI LINTON is Associate Professo r i n th e Departmen t o f Edu cational Foundation s an d Counselin g Program s a t Hunte r College-CUNY an d teache s course s i n th e psychologica l foundations o f education an d i n disabilit y studies . Her researc h interest s ar e primaril y i n disabilit y studie s and i n sexuality , an d sh e was th e founde r an d th e first chair person o f the Nationa l Coalitio n o n Sexualit y and Disability . In 199 5 sh e wa s a recipien t o f a Switze r Distinguishe d Fel lowship fro m th e Unite d State s Departmen t o f Education' s National Institut e o n Disabilit y an d Rehabilitatio n Research . She i s currentl y a t wor k o n a collectio n o f essay s o n th e disability experienc e entitle d Disability Stories.