Eugenics, Genetics, and Disability in Historical and Contemporary Perspective: Implications for the Social Work Profession [Online ed.] 0197611265, 9780197611265

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Eugenics, Genetics, and Disability in Historical and Contemporary Perspective: Implications for the Social Work Profession Gerald OʼBrien https://doi.org/10.1093/oso/9780197611234.001.0001 Published: 2022

Online ISBN: 9780197611265

Print ISBN: 9780197611234

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Copyright Page  https://doi.org/10.1093/oso/9780197611234.002.0003 Published: December 2022

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Subject: Social Work Research and Evidence-based Practice Collection: Oxford Scholarship Online

Oxford University Press is a department of the University of Oxford. It furthers the University’s objective of excellence in research, scholarship, and education by publishing worldwide. Oxford is a registered trade mark of Oxford University Press in the UK and certain other countries. Published in the United States of America by Oxford University Press 198 Madison Avenue, New York, NY 10016, United States of America. © Oxford University Press 2023 All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, without the prior permission in writing of Oxford University Press, or as expressly permitted by law, by license, or under terms agreed with the appropriate reproduction rights organization. Inquiries concerning reproduction outside the scope of the above should be sent to the Rights Department, Oxford University Press, at the address above. You must not circulate this work in any other form and you must impose this same condition on any acquirer.

Library of Congress Cataloging-in-Publication Data Names: O’Brien, Gerald, author. Title: Eugenics, genetics, and disability in historical and contemporary perspective : implications for the social work profession / Gerald O’Brien. Description: New York, NY : Oxford University Press, [2023] | Includes bibliographical references and index. Identi ers: LCCN 2022040652 (print) | LCCN 2022040653 (ebook) | ISBN 9780197611234 (hardback) | ISBN 9780197611258 (epub) | ISBN 9780197611265 Subjects: LCSH: Eugenics—United States. | Social service—United States. | Sociology of disability—United States. Classi cation: LCC HQ755.5.U5 O37 2023 (print) | LCC HQ755.5.U5 (ebook) | DDC 363.9/20973—dc23/eng/20220825 LC record available at https://lccn.loc.gov/2022040652 LC ebook record available at https://lccn.loc.gov/2022040653 DOI: 10.1093/oso/9780197611234.001.0001 135798642 Printed by Integrated Books International, United States of America

This book is dedicated to the memory of the late James W. (Jim) Trent Jr., social worker, disability advocate, scholar, teacher, mentor, and friend.

Eugenics, Genetics, and Disability in Historical and Contemporary Perspective: Implications for the Social Work Profession Gerald OʼBrien https://doi.org/10.1093/oso/9780197611234.001.0001 Published: 2022

Online ISBN: 9780197611265

Print ISBN: 9780197611234

FRONT MATTER

Acknowledgments  Published: December 2022

Subject: Social Work Research and Evidence-based Practice Collection: Oxford Scholarship Online

I’m grateful to my faculty colleagues and sta

in the Social Work Department as well as throughout

Southern Illinois University Edwardsville for their support of my research over the years, as well as to the College and University administrators. Special thanks to Jill Schreiber, Chair of the Social Work Department, past Chair Kathleen Tunney, Dean Emeritus Gregory Budzban and current Dean Kevin Leonard, Provost Denise Cobb, and Chancellor Randy Pembrook. I am grateful to those throughout the University who have supported students with disabilities over the years. This includes Dominic Dorsey and his sta

in the

ACCESS Center, Alison Reiheld, and Jane Floyd Hendey. Thanks also to Tammie Neathery for all she taught me about Deaf issues, and to Du

Wrobbel for his friendship and co-teaching disability classes with me. I

want to express my appreciation to Autumn Molinari and Meghan Bundy, past graduate assistants who worked with me on published articles related to eugenics. I’m especially grateful to Jim Trent, who I consider to have been among the most in uential disability scholars in the social work profession. I was fortunate to work with Jim and learn from him during the rst part of my career as a teacher and scholar, and I’m dedicating this book in his memory. I rst become interested in disability issues when I warily accepted a position working with developmentally disabled adults at the St. Louis ARC. I quickly came to love this job, though it gave me pause: How could I be so trepidatious about being around such a wonderful group of persons? I learned much from my clients, and thought a great deal over the next four decades about our general reaction to those with disabilities and the nature of disability stigma. Kathy Meath, the director of the agency at the time, was a source of inspiration and support to me, along with Amy and Rolando Vasquez, Irv Rudasill, and many other coworkers. Over the next decade, especially in my role as an agency director, I had the privilege of working alongside many others who impressed me with their dedication and compassion, including Tom Woolsey, Cathy Barnett, and Darla Gamble. I’m also indebted to the many clients I worked with, and from whom I learned so much. p. x

I grew up in a family with a strong sense of social justice, and I believe this prepared me to focus on an element of social work that pertained to matters of human rights; I thank my mother, Kay O’Brien, and my late father, Dan O’Brien, for stoking this interest. I’m also appreciative to my mother-in-law, Jackie McGurk, and late father-in-law, Don McGurk, who have always expressed interest in my research. I above mentioned the debt I owe to the St. Louis ARC. Without question the most important in uence the agency had in my life is that it was through my employment there that I met my wife, Jean. Jean has a strong passion for those who are devalued in society, and has always allowed me the time I needed to dedicate to

my research and writing, and for this I’m deeply appreciative. Thanks also to the rest of my family, Shannon, Mark, Kevin, Jade, Quinn, and Willow, as well as to my siblings and extended family. Thanks to Sarah Ebel, Dana Bliss, Fabian Shalini, and everyone else associated with Oxford University Press for their e orts getting this book to press. Some sections of several chapters of the book previously appeared in altered form in journal articles; thanks to the Journal of Sociology and Social Welfare and Social Work for providing permission to use this material. I’ve noted within the text where this content appears. My interest in eugenics and disability history began around 1990 when I picked up a copy of Steven Jay Gould’s The Mismeasure of Man at a library book sale. At the time I was the director of an agency serving developmentally disabled adults in Spring eld, IL. Over the next few decades, I read everything I could get my hands on related to disability history, including much of the primary source literature on eugenics. I’m grateful to the University of Illinois at Urbana/Champaign, where I received my PhD, for access to their archival material. An especially important period in my academic life occurred in 2004, when I was able to take part in a month-long forum pertaining to eugenics and related topics in Germany with about 18 other disability scholars. The forum was sponsored by the Einstein Institute and the Deutscher Akademischer Austauschdienst. In addition to daily sessions focusing on each participant’s speci c area of expertise, we traveled through the country and visited three of the six “T4” euthanasia sites. As I discuss in this book, these asylums were the rst spaces in Germany where gas was used for mass extermination. I’m grateful to David Mitchell and Sharon Snyder, who organized the forum, as well as the other scholars who attended. Lastly I want to thank the disability scholars and historians whose writings have fed my knowledge of p. xi

disability and related issues. This list includes

but is not limited to the following; Garland Allen, Adrienne

Asch, Douglas Baynton, Brenda Brueggemann, Jay Dolmage, George Estreich, Rosemarie GarlandThomson, Sander Gilman, Beth Haller, Angie Kennedy, Molly Ladd-Taylor, Paul Lombardo, Romel Mackelprang, Andreas Musol , Kim Nielson, Martin Pernick, Robert Proctor, Dorothy Roberts, Johanna p. xii

Schoen, J. David Smith, and Wolf Wolfensberger.

Introduction Over the past few decades there have been two important developments within American society that have had profound impact on both the disability and social work communities.1 First, genetic research, as well as policy and practice innovations based on this research, has expanded greatly over the past few decades. Tis is indicated, for example, by the mapping of the human genome in 2003, an expansion of prenatal genetic testing and counseling options, eforts to tailor drug regimens based on one’s genetic makeup, popular genetic ancestry and medical testing services, and potential inroads to genetic engineering, along with a host of other biogenetic research innovations. Te second important development has been the growth of the disability rights movement, which in many ways parallels the civil rights campaigns of other “minority” groups. Importantly, the coexistence of these two developments poses intriguing challenges for social work that the profession has yet to address in a meaningful way. Moreover, coming to terms with these issues is especially important for social work professionals in our crucial role as advocates for marginalized or devalued populations. Te recent expansion and practical application of genetic research has fostered, depending on one’s perception, utopian dreams of a world without disability, or dystopian nightmares of a world that is both largely devoid and highly contemptuous of persons with disabilities. As professionals, social workers will play an integral role in both implementing genetic research and facilitating the inclusion of persons with disabilities within the life of the community. Not only genetic counseling but also other forms of individual and family treatment are certain to be greatly impacted by genetic research and public policies related to it in the near future. Moreover, social work professionals from a broad range of backgrounds must be involved in policy discussions and the development of public policies relevant to these bioethical and disability concerns. In regard to advocacy, little explication needs to be given that this is an important element of social work. Our duty to advocate arises principally in relation to potentially vulnerable or historically maltreated groups, which certainly includes persons with disabilities. Such Eugenics, Genetics, and Disability in Historical and Contemporary Perspective. Gerald O’Brien, Oxford University Press. © Oxford University Press 2023. DOI: 10.1093/​oso/​9780197611234.003.0001

2  Eugenics, Genetics, and Disability advocacy is a key component of the profession’s Code of Ethics and should be a central element of diversity education in the profession. Indeed, as further discussed later, one would hope that disability content in the profession moves from the “social problem” classifcation to the “diversity issues” one to an increasing degree. In order to understand the professional role of social workers within the context of a “new world” of genetics, it is important that we become aware of important historical precursors, especially the eugenic alarm period of the early 20th century. While many in the profession may be familiar with the rudimentary aspects of eugenic control, the relevance of this historical period is not only instructive but indeed essential to anyone who seeks to engage in discussions related to the current or future application of genetic research. Social work professionals, and especially those who engage in genetic counseling, need to also be aware of the history of the profession in relation to both the eugenic movement and the provision of services for persons with disabilities. As delineated below, the social work feld has historically not been at the forefront of disability advocacy, and our ofentimes paternalistic treatment of those with disabilities, as well as the profession’s continued embrace of the medical over the minority group model of disabilities, has ofen resulted in an uneasy relationship between social workers and those with disabilities. Sufce to say that many persons with disabilities view us warily when we say they should consider us to be allies. With the rapid expansion of genetic advancements over the past few decades, including the mapping of the human genome, historical eugenics is frequently invoked, usually by opponents of such advancements, as a pertinent point of discussion related to the practical and moral implications of such eforts. Many invoke Nazi parallels and discuss the imminent arrival of a new era of eugenics, and some disability rights groups have gone so far as to compare certain genetic innovations, especially genetic testing coupled with the abortion of “impaired” fetuses, as a form of cultural or minority group genocide (Miller & Levine, 2013). Prior to discussing the relevance of some of these arguments for the social work profession, it is important to defne important terms and consider a few of the major assumptions and misconceptions that surround these issues, and serve as important focal points for this book. First we need to consider more precisely what “eugenics” is. Te term is today invoked freely, frequently to further certain specifc political or ideological agendas, and its defnition varies widely based on its utility in any

Introduction  3 particular situation. At its most basic, eugenics, as Francis Galton (1907) frst defned the term he created, means “good in stock” or “good race” (and not, as one might assume, “good genes”2). It relates to any cultural, environmental or political processes (e.g., fscal or social incentives or disincentives, diferential medical access, laws pertaining to procreation) that “give the more suitable races or strains of blood a better chance of prevailing speedily over the less suitable than they otherwise would have” (p. 17). Historically this particularly pertained to relative fecundity or birth rates, as many eugenicists were concerned about “race suicide,” and that “unft” portions of the population would eventually overwhelm the more “ft” through their expansive breeding. As traditionally employed, then, eugenics relates to family bloodlines or the collective “gene pool” more so than individual characteristics, though ofen, particularly in the past, visible traits or broad ethnic or racial stereotypes have been used to assume the presence of underlying hereditary impairments, or to determine potential genetic “ftness” (Gilman, 1988). Tis presumption of the importance of heredity was a fundamental principle in the formulation of eugenic policy in both the United States and Nazi Germany. Counter to eugenics is “dysgenics,” or policies or social practices that support, ofen unwittingly, the breeding of “less ft” segments of the population, or serve to diminish breeding among the “ft” classes. For example, many eugenicists argued that women desiring to become college educated and enter the workforce was dysgenic, since this would cause middle-​and upper-​class women to put of childbearing for a time and thereupon reduce the number of children they might have (Roosevelt, 1914). As I’ll return to later, a frequent criticism of social work over the years has been that it is a dysgenic enterprise that supports or incentivizes not only the survival but also the procreation of “inferior” humans. Tis criticism of social welfare predates the social work profession, and perhaps its most important early promoter was Tomas Malthus (1967), in his contention in the late 1700s that charity and the Elizabethan Poor Laws were harmful to the well-​being of society since they allowed the poor to survive and breed. A core problem with the conceptualization of eugenics, not only as Galton viewed it but even today, is that a subjective judgment of “suitability,” “goodness,” or “desirability” lies at the heart of any program of controlled breeding. A related problem is that one could certainly question which characteristic(s) society should manipulate or control for through a planned breeding program. Why try to foster intelligence through a such a program as opposed to

4  Eugenics, Genetics, and Disability morality, compassion, health, or athleticism? During the eugenic period in both the United States and Nazi Germany, most advocates simply assumed that both negative and positive traits generally coalesced together, such that few individuals shared widely divergent qualities. Tose who were immoral or disabled were also likely to be poor, criminalistic, unintelligent, cowardly, lazy, etc. Conversely, that which was considered beautiful was pure, good, attractive, and generally unmarked by disability (Gilman, 1988, 1995). Eugenic policies can be described as a form of social engineering. For the purposes of this book, I will defne social engineering as any efort by a society to support public policies or cultural practices that encourage or discourage individuals from taking on certain specifc occupational, educational, or social roles. One could argue that a society has the right (perhaps even the duty) to manipulate which roles individuals decide to take on, since all citizens are impacted by those decisions. Such (dis)incentives may be social (stigma, embarrassment, or a source of pride) or economic (tax incentives, targeted student loan deferments). Social workers, physicians, or teachers, for example, might be provided with inducements to encourage them to practice in rural or inner-​city communities that otherwise have difculty attracting professionals. Many eugenicists over the years have argued that the tax system should be manipulated to discourage poorer individuals from having children, while at the same time providing child-​related tax breaks for middle-​and upper-​income families. Almost 120 years ago in Great Britain, for example, Francis Galton (1904) supported such inducements as housing subsidies and educational support for promising young people to encourage them to have large families. Because of the historical importance of heredity and family bloodlines in defning eugenics, it may be questioned whether all medical or social practices that are ofen considered to be “eugenic” rightly fall under this umbrella. Many of those who were targeted for extermination by the Nazi “euthanasia”3 program, for example, were not likely to procreate. Either they had already been sterilized or had been placed in a gender-​segregated institution, or the extent of their disability likely precluded the possibility they would reproduce. Even for those who might not have been sterilized, the cost of transporting them to the asylums and killing them far outweighed the cost of sterilization, which would have been just as efective from a purely eugenic standpoint. One could therefore contend that the principal goal of the Nazi “euthanasia” program was not “eugenical,” since it was not simply to ensure that the bloodline of these persons was stopped, but rather to remove them

Introduction  5 from the world altogether. Te primary goal was instead economic, to stop supporting public funding of these “useless eaters,” as the Nazis referred to them, and free up institutional space so these facilities could be deployed for injured soldiers or other uses by the state. Secondarily, as I will expand on later, metaphorically the pure Aryan society Hitler envisioned was free of hereditary disability (Koenigsberg, 1975; O’Brien, 2018). Likewise it could be argued that contemporary discussions about physician-​assisted suicide or infanticide do not relate to “eugenics” per se, since most of those who would likely fall under such policies would not be expected to produce ofspring. Many experts would consider this restriction of the word to be splitting hairs, but, like any term, eugenics is at risk of losing any real meaning if it is expanded to an untoward degree or used in a large variety of ways. Tis is particularly true here since we are dealing with a term that already carries with it an extraordinary amount of historical and emotional baggage. It should be added, however, that practices such as infanticide do become “eugenic” if the target individuals have less intensive disabling conditions and could be expected to eventually produce children. In the United States, however, at this juncture, children who are not provided with life-​sustaining treatment in hospital settings usually experience severe disability conditions and would not be expected to reproduce. Indeed, many would not likely survive childhood. Nonetheless, many of the ethical and other considerations that pertain to eugenics are relevant in regard to these other related areas (infanticide, euthanasia), especially since many of the rationales supporting social control, restriction, or elimination of persons with disabilities are prevalent regardless of whether heritability comes into play. Tese questions also surround the very basic question of who we believe should be in the world, and the inherent value that we attach to various persons. Within this book, while I will focus to a large degree on the importance of inheritance, reproduction, and the larger gene pool, I will also discuss issues that are pertinent to these other areas that are closely aligned with traditional eugenics, and especially prenatal screening and abortion. I will therefore employ the more expansive defnition of eugenics. At its heart eugenics has always been about discomfort with imperfection and what are perceived to be bodily or cognitive/​psychological impairments, and so the full range of aversive reactions to persons with disabilities needs to be considered in coming to grips with eugenics in both its historical and contemporary aspects.

6  Eugenics, Genetics, and Disability I will also focus almost exclusively on negative eugenics, or eforts to diminish the breeding of the members of certain specifc groups who we feel should not have children. Positive eugenics, described as policies or procedures to enhance the genetic makeup of children, or to encourage presumptively “ft” parents to expand their breeding, is inextricably connected to negative eugenics, so it will be discussed to some degree, especially in relation to genetic engineering. Tis is relevant particularly since the potential future large-​scale application of positive eugenics may have a profoundly negative impact on our already stigmatized view of persons with disabilities. A large-​scale positive eugenic program (e.g., through genetic modifcation) could also serve to bring lesser forms of disablement under greater scrutiny, and potentially carry them under the intensive gaze of the medical industry and the umbrella of eugenic policies. Indeed, as I’ll discuss below, one of the key concerns regarding prenatal screening is how far we should progress in screening for conditions of progressively lesser “severity.” Mainstream eugenicists ofen focused on elimination of the “bottom 10%” of the population (Grant, 1916). Of course, this is an unreachable goal, since there always would arise a new “bottom 10%.” Even if the slowest runner is removed from the race, there will still be a slowest runner. For the most part, however, I will focus on negative forms of eugenics and their impact on persons with disabilities and related subpopulations, as well as on how our societal view of such persons plays into these issues, and their impact on social work and related professions. One caveat that is extremely important to note before I conclude this introduction is that my intention here is not to question the decisions prospective parents make in regard to prenatal or other decisions. Many parents go through intense emotional struggles in coming to grips and living with the real-​world decisions pertaining to the numerous bioethical and reproductive issues that are described in this book (Ferguson, 2001). Tere are no easy answers to these quandaries, and I have no intention of second-​guessing or sitting in judgment of such parental decisions, though I admit that it’s quite impossible to write a book such as this without it appearing that this is the case. My goal here, rather, is to demonstrate to social work professionals and educators, as well as those in related professions, that while these issues are extremely complicated, we need to be aware of how a strong historical negative bias in our response to disablement (and thus persons with disabilities) can impinge, even in ways we don’t consciously understand, on our approach

Introduction  7 to these issues, and the importance of taking into account a disability rights perspective when considering these difcult issues. Tis book is organized into two major parts. Following a brief chapter that sets out the main paradox that the book takes up, the next three chapters form the historical section. I provide a very brief overview of eugenics in the second chapter, consider the movement’s impact on persons with disabilities in the third, and focus on the interrelationship between eugenics and the burgeoning social work profession in Chapter 4. Te second part of the book describes contemporary issues and their relationship to both historical eugenics and the minority group model of disabilities. Chapter 5 considers the relationship (or lack thereof) between historical eugenics and contemporary bioethical issues, as well as the role of the social work community within the context of these issues. Chapter 6 focuses on current bioethical issues from the perspective of the minority group model of disability, and the fnal chapter considers implications of these various issues for the social work profession.

Notes 1. Referring to the “disability community” certainly does not imply that those who are identifed as having disabilities or those who identify themselves this way can be considered a homogeneous collective. As is the case with the African American, Hispanic, or LGBTQI+​“communities,” the term serves as a helpful shorthand. 2. At the time Galton came up with the term “eugenics,” Mendel’s laws had not yet been rediscovered, and the term “genes” was not used. 3. Te term “euthanasia” will be placed in quotation marks, as this term implies a “good death,” and it can certainly be argued that euthanasia involving persons with disabilities, especially those who can’t make an informed decision and are killed outright, is not by any means a good death.

1 Meta-​messages and a Tale of Two Policy Statements It is as if my house was bisected by a border: Te front door opens on one country, the back door on another. In one country Laura is valued and seen, and her diferences are neither stigmatized, nor held against her, nor used to argue that others like her should not exist; they are accommodated, and she receives what she needs without grudge or pity. In the other country, she is the emblem of the failed pregnancy, a synonym for tragedy, a target of ridicule, an expense to the nation, and the opposite of progress. Each vision has its accompanying future. Estreich (2019, p. xvi)

An important question that will form the thesis for much of this book pertains to the broad underlying “meta-​messages” that are communicated (overtly or covertly) to persons with disabilities by the larger community about their status.1 Here I am using the term “meta-​message” to refer to a broad overlying message that is based on the sum total of verbal and nonverbal communications that people receive, especially about themselves and their identity or value, from micro (individual or small-​group conversations) and macro (mass and social media) as well as historical sources. Many disability rights advocates would contend that they receive two important overriding messages about the nature of disability and their personal identity, their importance or place within American culture, and that these messages directly contradict one another. Te frst meta-​message is that persons with disabilities are accepted as full citizens within the community; that any form of discrimination or prejudice against them is to be resoundingly condemned by society at large, similar to oppression against any marginalized population; and that we all should do our part to accommodate Eugenics, Genetics, and Disability in Historical and Contemporary Perspective. Gerald O’Brien, Oxford University Press. © Oxford University Press 2023. DOI: 10.1093/​oso/​9780197611234.003.0002

Meta-messages and Two Policy Statements  9 individual needs. Te second meta-​message is that fetuses who have those same disabilities are undesirable, or at least that the parental decision to prevent the birth of such a child is a perfectly reasonable one, not to be interfered with. Importantly, to many persons with disabilities this second message implies important meaning about the value that is accorded to themselves and others like them within the community (Ajandi, 2008), and thus how persons with disabilities should perceive themselves or their own relative worth. As will be further discussed later, this is ofen referred to as “expressivism,” the presumption that society is, perhaps unknowingly, expressing a particular view of disability when decisions to terminate a pregnancy due to the potential disability status of the fetus are supported and encouraged. Is it viable, disability advocates contend, for an individual, group, institution, or profession to hold to both of these messages concurrently? Can we, in other words, honestly tell people that we are embracing their presence in the world while we covertly or explicitly support decisions that would diminish the birth of others who are like them because of the nature of their specifc “minority condition”? One might argue that abortion is, despite one’s personal view of the matter, a legal option for parents, and thus such decisions are between the potential parents and their physicians. However, a proposed policy that would allow abortion for gender selection purposes or any other form of discrimination (e.g., in the future, if one could reliably test for a genetic marker related to sexual orientation or perhaps even the propensity for substance abuse or schizophrenia) would likely be opposed by a large segment of society (Steinbock, 2000). Tose opposed to such a policy might well include many who generally identify themselves as “pro-​choice,” on the grounds that the former example would constitute an inappropriate form of gender discrimination, presumably against females, especially since a somewhat larger percentage of parents would likely choose a male child (Maranto, 1996). Returning to the issue raised above about the inherent message that might be sent in regard to the termination of fetuses with specifc characteristics, in cultures where gender selection is widely practiced and female fetuses are aborted in higher proportions to males, this obviously sends a palpable message about diferential gender value. To no one’s surprise, these are also generally nations (China, India, Singapore) that stigmatize females and provide greater benefts to males (Chan, 1985; Lazar, 2001). One might question, then, whether parental privacy in such decisions should be viewed as inviolable. Even if these disparities aren’t forced by government mandate,

10  Eugenics, Genetics, and Disability the culture itself may foster this form of social engineering. While I am not contending that the two examples (gender selection and selection according to disability status) are morally equivalent, one can certainly argue that the routinization of such practices related to fetuses with presumptive disability conditions sends a similar denigrating message about the value of disability within our culture as gender selection would send about the relative worth of females.

Social Work Speaks Tese two meta-​messages (you are valued and equal, but it might be better if others like you didn’t exist) come through very clearly in two policy statements that were included within Social Work Speaks, the most important social work–​related publication focusing on policy issues, published by the National Association of Social Workers (NASW). Tis publication includes a large number of social work policy statements and stands as the “voice of the profession” relative to these issues. Every three years NASW members from throughout the country gather, face to face or in a virtual format, to revise a select number of these policy statements and recommendations. Te two statements that are of interest here are titled “Genetics” and “People with Disabilities.” In the 2003 edition of this work, the Genetics statement focused heavily on the importance of parental self-​determination in genetic testing decisions, along with such issues as the need for equal access to genetic procedures, the importance of a neutral or value-​free stance by genetic counselors, and the maintenance of privacy and freedom from discrimination, especially in the workplace or insurance provision, related to genetic tests and fndings (National Association of Social Workers, 2003a). Te policy didn’t really touch on disability or eugenic issues to any degree, except to note that “NASW opposes the use of genetic research to alter populations of people and to remove certain traits deemed by society as ‘unft’ ” (p. 164). Reading between the lines, then, the statement appears to say that parental decisions vis-​à-​vis the termination of a pregnancy for disability purposes are supported, especially so long as there is good communication and equal access to such services, but large-​scale programs (e.g., governmental, corporate) to direct such eforts are inappropriate (O’Brien, 2011a).

Meta-messages and Two Policy Statements  11 However, as alluded to above, many disability rights advocates would contend that separate parental decisions related to the termination of impaired fetuses as well as negative governmental policies related to persons with disabilities arise largely within the same contextual atmosphere, and are initiated by many of the same motives, including fear of, pejorative attitudes toward, and the presumptive economic costs associated with disability. It is at least valid to question whether it really makes much diference if a long-​ term diminishment in a particular subpopulation arises from a large number of separate personal decisions as opposed to a government policy, especially if both are informed by similar cultural ideals and values. To many of the surviving members of the “targeted” population, the diference may seem to be largely irrelevant (O’Brien, 2011a). Te Genetics policy statement is completely disassociated with the People with Disabilities statement, as if the two have little if any relation to one another. Te latter statement, as one might assume, includes numerous comments that support the integration of persons with disabilities within the community, and decry the “negative social attitudes” that “prohibit them from fully participating in U.S. society” (National Association of Social Workers, 2003a, p. 272). Tis statement further notes that NASW supports and is willing to take action with people who have disabilities in advocating for their rights to participate fully and equitably in society. Tese rights include the freedom, to the fullest extent possible, of all people with disabilities to live independently, to enjoy the rights of full societal membership, to exercise self-​determination, and to have full participation in issues related to education, housing, transportation, work, health care, social services, and other public accommodations. (p. 273)

Genetic testing was not mentioned anywhere in this latter policy statement, and there was no efort to reconcile the inherent contradictions within the two statements. Notably, the terms used in each statement to describe “impairments” difer, as if varying terminology demarcates the two as focusing on completely diferent sociopolitical issues. While the terms “disability,” “impairment,” “disorder,” “condition,” “diagnosis,” etc. are generally used in normal conversation interchangeably,2 there is hardly any overlap between the two policies in which terms are used. In the Genetics policy statement, the term “disability” only appears once, while the more negative terms

12  Eugenics, Genetics, and Disability (condition, disorder, disease, diagnosis, impairment, etc.) appear 26 times. Within the People with Disabilities statement, disability is always used as the descriptor, with over 80 appearances. Te other terms aren’t found. It would likely provide some discomfort upon reading the Genetics statement if the term “disability” was used in place of the alternative terms, especially if one frst read the People with Disabilities statement. Marsha Saxton (2017) writes that the term “disabled” personalizes the individual, while terms such as “defective” depersonalize and dehumanize them (p. 80). Even what appear on the surface to be very similar terms may pave the way for diferential modes of thought and therefore diferent responses. As Bosmajian (1983) wrote, the “distance between the linguistic dehumanization of a people and their actual suppression and extermination is not great; it is but a small step” (p. 29). One caveat here is that the policy statements that appear in Social Work Speaks are generally written by diferent groups of professionals, and therefore these two statements may well not have been written by the same persons. I would argue, however, that the divergent terminology speaks volumes about our subconscious eforts to divorce these two issues from one another. Tis is no small point. Social workers are, among other things, communication specialists, and we need to understand the importance of even subtle diferences in phraseology (O’Brien, 2019), especially when such diferences pertain to matters of social justice. Tese statements remained the same until fairly recently, being revised in minimal ways for the 2018–​2020 edition of Social Work Speaks (National Association of Social Workers, 2018). In this edition, a small step was taken to bring these two statements together, as the Genetics statement notes that the “historical treatment of people living with disabilities calls for social workers to be aware of transference issues and subjective assumptions regarding the meaning of a disability or health condition for a client’s well-​being and quality of life” (p. 142). Te statement also recommends “eliminating funding for and the use of genetic research to alter populations of people and to remove traits deemed by society as ‘unft’ ” (p. 144). I begin with this example because it is emblematic of the two faces we have as a society in relation to persons with disabilities. Nor is this quandary a new phenomenon within our profession, or in the nation itself. As will be described in greater depth in Chapter 4, the social work profession has always struggled to draw a balance between disability advocacy and social engineering policies and practices that adversely impact the perception and treatment of those with disabilities. Ofen this social engineering

Meta-messages and Two Policy Statements  13 has occurred within the context of the provision of social welfare benefts, with policies being established relative to the receipt of these benefts that disincentivize childbearing for those in poverty. Tis is an important issue in relation to persons with disabilities, since such persons have always been disproportionally likely to be living in poverty.

Notes 1. An earlier version of much of the information in this chapter was originally presented in O’Brien (2011a). Tanks to NASW Press for permission to reprint this material. 2. Much of the literature in disability studies discusses these various terms, along with the history behind them and the subtle aspects that diferentiate them from one another.

2 A Brief History of Eugenic Control If all of the mental defectives in Indiana could be gathered together tomorrow and placed under the permanent care and detention of the State and the defectives of other States could be prevented from entering, feeble-​mindedness could be practically stamped out in a generation. Sale (1911, p. 194)

Over 2,000 years ago the Greek philosopher Plato wrote as follows in his landmark book Te Republic: We must, if we are to be consistent, and if we’re to have a real pedigree herd, mate the best of our men with the best of our women as ofen as possible, and the inferior men with the inferior women as seldom as possible, and bring up only the ofspring of the best. And no one but the Rulers must know what is happening, if we are to avoid dissention in our Guardian herd. (1986, p. 240)

But how to only bring up the “good” children? Plato continues by writing that “the children of the inferior Guardians, and any defective ofspring of the others, will be quietly and secretly disposed of ” (p. 241). Tus the concept of eugenic control has indeed been with us for a very long time, and cuts across both time and culture (Roper, 1992). Plato’s Republic was a utopian missive. He considered how society might best be arranged in order to develop along the most preferred lines. Virtually all utopian essays consider both the planned evolution or construction of the environment to enhance society to the highest degree as well as suggesting methods of controlling behavior and punishing transgressors or rewarding normative behavior. In addition, many of these utopias, like the Republic, consider what policies or social practices needed to be in place related to Eugenics, Genetics, and Disability in Historical and Contemporary Perspective. Gerald O’Brien, Oxford University Press. © Oxford University Press 2023. DOI: 10.1093/​oso/​9780197611234.003.0003

Brief History of Eugenic Control  15 breeding, to ensure that the “better” classes of society had more children, and the “lesser” classes had fewer, or were altogether incapable of breeding (Hertzler, 1965). It should be noted that most utopian writings also serve as dystopias, since the more we attempt to guide and control evolution, the less freedom people have. Perhaps it’s true to say that one person’s utopia is another person’s dystopia, depending on each individual’s particular standing within society and the impact of such practices on themselves and their family. A central feature of science fction books and movies focused on utopias, such as the genetically engineered future in the flm Gattaca, is their dark side. A core trope of these depictions is the creeping realization that perfection fades the more one lifs the veil of imposed normalcy. Many societies over time have practiced a crude form of eugenic control, only giving children a name or performing an early initiation rite when it appeared that they were not obviously impaired. In some of these cultures the child was not viewed as fully human until such a determination had been made. Breeding practices in many societies were rigidly controlled, and ofen infanticide or expulsion from the community would be recommended for “non-​normative” individuals, as well as close inspection and vetting of anyone entering from the outside (Iseman, 1912). As the later eugenicists would do, many of these early writers and theorists contended that there was no reason to believe that controlled breeding practices, especially if followed over generations, could not create a more improved type of human, just as in the case of plant and animal husbandry. Interestingly, a large number of the important names in the history of eugenics, including Gregor Mendel, Charles Darwin, Sir Francis Galton, Alexander Graham Bell, and many of the well-​known American and German eugenicists (including Heinrich Himmler), had a strong interest in plant or animal breeding and how this form of research could be carried over to humans. Luther Burbank, perhaps the most important early horticulturist in the United States, wrote (1907) that “I have constantly been impressed with the similarity between the organization and development of plant and human life” (p. 3). He argued that as with plants, a superior human breed could be developed if attention was focused on controlling both heredity and the environment.

19th-​Century Infuences Te 20th-​century eugenics movement was informed by Tomas Malthus’s writings on population as well as Darwin’s theory of evolution. Writing a

16  Eugenics, Genetics, and Disability century before the movement, Malthus (1967) said that it did not seem impossible that by attention to breed, a certain degree of improvement similar to that among animals might take place among men. Whether intellect could be communicated may be a matter of doubt; but size, strength, beauty, complexion, and, perhaps, even longevity, are in a degree transmissible. . . . As the human race, however, could not be improved in this way without condemning all the bad specimens to celibacy, it is not probable that an attention to breed should ever become general. (p. 9)

For his part, in his book Te Descent of Man and Selection in Relation to Sex, Darwin (1897) wrote that “[b]‌oth sexes ought to refrain from marriage if they are in any marked degree inferior in body or mind; but such hopes are Utopian and will never be even partially realized until the laws of inheritance are thoroughly known” (p. 618). Te major contributor to the eugenics movement during this century was undoubtedly Britain’s Sir Francis Galton, who primarily wrote during the last decades of the 19th century. Galton contended that both positive and negative traits ran in families, and that in order to improve its human “stock,” nations needed to fnd ways of incentivizing procreation among the more “ft” members of society, while at the same time creating disincentives for procreation among those groups that were deemed less ft. He suggested, for example, that housing subsidies, educational loans, and other benefts be given to those in the former category. As Malthus had previously suggested, Galton also believed that welfare or charity was in opposition to eugenic principles since its recipients, largely poor or otherwise presumably unft members of society, would then be in a better position to have children, which would be socially damaging (Galton, 1907, 1996). He believed that Western society had been slowly degenerating because not enough attention was being paid to race and breeding (1870), and wrote that eugenics “must be introduced into the national conscience, like a new religion” (1904, p. 5). An early statistician, Galton was highly interested in measuring human attributes and assessing individual and family worth based on the result of these measurements (L. Davis, 1997). Herbert Spencer and other social Darwinists would pick up on this line of thought, and argue that a well-​intentioned society was only harming itself by supporting the procreation of its poor, criminalistic, addicted, and disabled

Brief History of Eugenic Control  17 members. If such persons, along with their children, could survive on their own, then so be it; but it was counterproductive for a society to purposefully support the survival of such groups out of compassion or a sense of empathy (Spencer, 1893, 1904). One eugenicist, for example, opposed the prohibition of alcohol, arguing that alcoholism was one natural means of eliminating unft persons (Batten, 1908). While many eugenicists borrowed certain ideas from social Darwinism, Leonard (2005a) contends that the presumption of a close relationship between social Darwinism and eugenics is somewhat inaccurate, in part because historical eugenics involved strong social control by governmental authorities, and social Darwinists such as Spencer were largely opposed to governmental interference or any form of state-​based social engineering (also see “Eugenics and Democracy—​A Paradox,” 1932; Paul, 1998).

Te American Eugenics Movement Te eugenics movement emerged as a major social force in the United States following the 1900 rediscovery of Mendel’s laws of inheritance, as these laws provided a scientifc foundation for eugenics. Supporters of the movement argued that if the nation would develop methods to ensure that those with desired characteristics bred in greater numbers (termed “positive eugenics”) and at the same time diminished the breeding of those with undesirable characteristics (termed “negative eugenics”), the species would presumably be improved. Additionally, the community, eugenicists were quick to add, would save an extraordinary amount of tax and charity money, which could be used for “better” purposes (Chase, 1977; Kevles, 1985). While eugenics found some degree of worldwide support, it was in the United States where a major eugenics program would frst fourish. At the beginning of the movement, a broad range of “undesirables” were targeted for control, including persons with disabilities, criminals, prostitutes and other “sexually immoral” persons, those in poverty, and alcohol and drug abusers. Unftness was described by a plethora of inexact and overlapping “diagnoses,” many of which were exceedingly vague. As Wright (1891) wrote prior to the turn of the century, To a considerable extent these . . . defective classes link into one another. It is hard to say whether a tramp is a pauper or a criminal. . . . A very large per cent of criminals become insane in prison or aferward. A considerable

18  Eugenics, Genetics, and Disability number of paupers become insane. Te children of one class pass easily into the other class. . . . Here and there in our country, and in every other one, are knots of defectives all tangled up together, families closely related furnishing a whole population of criminals, idiots, and lunatics among themselves. . . . Te interchangeability of these defects is very clearly shown in these cases. (p. 227)

As the movement coalesced, however, eugenics came to be inextricably connected to care and treatment of those who were diagnosed as “feeble-​ minded,” as these individuals were widely viewed as the primary source of these other social problems (O’Brien, 1999, 2013a; Smith, 1985; Trent; 1994). Importantly, the development of the intelligence test shortly afer the turn of the century allowed for the presumptive scientifc delineation of the feeble-​minded element of the population (Goddard, 1910; Gould, 1981a; Zenderland, 1998). Tese persons, and particularly “morons,” were believed to be the nucleus from which a wide range of dysfunctional qualities emanated. Te two categories of feeble-​mindedness that included persons with more marked impairments, imbeciles and idiots, had long been known, but the higher-​functioning “moron” class was the principal concern of eugenicists. Such persons were said to be more difcult to identify since they graded over into the general population and, of particular importance, they were much more likely to breed. Henry Goddard, a leading fgure in the eugenics movement, frst described the moron in a 1910 article in the Journal of Psycho-​Asthenics. As Goddard said in his attempt to fnd the best term to describe these “high-​functioning” feeble-​minded persons, the “word proposed is a Greek word, the noun from the Greek word meaning foolish, ‘moronia,’ and these children might be called ‘morons’ ” (p. 27).1 Te center of eugenic research and propaganda in the United States was Cold Spring Harbor on Long Island, New York, where the Eugenic Record Ofce was established in 1910. Under the guidance of Charles Davenport and Harry Laughlin, the Record Ofce attempted to gain information on family histories and identify those families that should either fall under positive or negative eugenic policies. Te Ofce also supported eugenic family studies such as Goddard’s infamous work on New Jersey’s Kallikak family (Goddard, 1912a; Gould, 1981a; Laughlin, 1911). Tese studies purported to demonstrate that both good and bad qualities were intergenerational and likely genetic, and therefore they were used to support the principal theoretical and scientifc foundation of the movement. In some ways the Record Ofce was

Brief History of Eugenic Control  19 established as a very rudimentary genetic counseling center, as it attempted to develop a large collection of individual family histories and provide some advice on potential eugenic (as well as dysgenic) matings.

Eugenic Policies Te eugenic movement in the United States reached its peak between 1910 and 1930. As the movement grew, eforts to enact eugenic legislation that would restrict breeding among devalued community groups became its central goal. Involuntary sterilization was likely the form of control that is most associated with the movement (Reilly, 1991). Many states didn’t even wait for a sterilization law to pass prior to undertaking the procedure, and some even castrated individuals who were in institutions (Pilcher, 1894). Te most important eugenic legal victory came with the Supreme Court’s Buck v. Bell decision in 1927, which held that it was constitutional for the states to practice involuntary sterilization (Buck v. Bell, 1926; Dudziak, 1986; Lombardo, 2008). An important element of social welfare history is that, in states such as Virginia and North Carolina, eugenic sterilization of persons labeled as having intellectual disabilities paved the way for the forced sterilization of women (especially minorities) receiving public assistance (Britton, 1963; Ryan, 2007). Tis important issue will be taken up again later. By the time the eugenics movement ended, approximately 70,000 Americans had been forcibly sterilized, and many more had been institutionalized against their will. Forced institutionalization was ofen mandated for “dysgenic” persons, including adolescents, who were believed to be liable to become parents (“Feeble Minded Boys . . .,” 1915). In part the development of the juvenile court system in the United States was designed to help determine which juveniles should be forcibly committed, ofen for eugenic purposes (Ryan, 2007). Institutional development for both persons with feeble-​mindedness as well as those with epilepsy fourished during the era, with major focus on the confnement of those who were most likely to become parents. As Jackson (2000) wrote, the assumption that feeble-​mindedness and other deleterious conditions were hereditary and thus incurable was also benefcial to institutional administrators since demonstrating improvement in the skills of their residents could be framed as a nearly impossible task. Indeed, behavioral or educational improvement was not a major priority of such facilities, as moronity more and more came to be seen as an intractable condition and the

20  Eugenics, Genetics, and Disability primary goal of institutionalization became sexual segregation and “warehousing” rather than educational or social improvement (Ferguson, 2001; Trent, 1994). Some states additionally passed legislation restricting the ability of persons with feeble-​mindedness and other disabilities to marry, and many ministers took it upon themselves to refuse to marry anyone who didn’t have a “eugenic marriage certifcate” (Sumner, 1914). Margaret Sanger and other early supporters of birth control also touted this as a potentially viable method of eugenic control (Sanger, 1922). Most leaders of the American movement were wary of restrictive marriage legislation as well as the widespread dissemination of birth control information, and questioned whether either could really become a serious eugenic measure (Black, 2003; Goddard, 1914; O’Brien, 2013b). Tey felt that persons who were feeble-​minded would have intercourse regardless of whether marriage restrictions were in place, nor would they be likely to use voluntary methods of birth control (“Birth Control,” 1925; Rucker, 1915). “If all the contraceptive technics in the world were made available to them,” Raymond Pearl wrote, “they would still go on breeding” (1935–​36, p. 232). To quote E. A. Whitney (1933), a physician and superintendent of a large Pennsylvania institution, “those who should not reproduce are of such low mentality that they cannot grasp the ideas and meaning of restrictive marriage laws, eugenic education and birth control” (p. 85). Predating the development of long-​acting birth control by decades, one eugenicist wrote in 1938 that in the future perhaps unft women could be “vaccinated semi-​annually against contraception” by the state, removing concerns that such women couldn’t be counted on to follow up themselves (Robinson, 1938, p. 261). Eugenic concerns about the health or mental status of immigrants were an important rationale for passage of the 1921 and 1924 restrictive immigration laws (Dolmage, 2011; “Europe as an . . .,” 1924; O’Brien, 2003b; Okrent, 2019). Flawed intelligence tests were employed to provide “evidence” that large numbers of immigrants, especially from “undesirable” parts of the world, were feeble-​minded. Beginning in the fnal decades of the 19th century, a steadily increasing number of immigrants were coming to the country. Tis “new immigration,” as it was referred to, was a concern to many not only because of the large numbers but also because new arrivals were largely from Southern and Eastern Europe, as opposed to the Northern and Western European immigrants who, it was ofen said, “built the nation.” Immigration restrictionists argued that not only were these newer immigrants of a lower

Brief History of Eugenic Control  21 class than previous ones, but also that nations were engaging in “assisted immigration,” purposefully sending over the worst of their citizens, including persons with disabilities. Eugenicists argued that policies to enhance the ftness of Americans would fail if additional undesirable immigrants were allowed into the country. Te 1924 law seriously restricted immigration from “undesirable” nations and required increased inspection of immigrants along eugenic lines (O’Brien, 2011b). Robert Ward, a leader of the immigration restriction movement, said that the 1924 act was “in its essentials, a eugenic measure” (cited in Okrent, 2019, p. 227). Especially late in the eugenics movement, not only Hispanic immigrants but even citizens of Hispanic descent were frequently deported, ofen for eugenic or other ostensibly “public health” reasons (Molina, 2006). In the United States as well as other nations, eugenic policies overlapped a great deal with immigration concerns. Tere was also strong intersection between eugenic proposals and colonialism. As further discussed below, sterilization, forced institutionalization, and other eugenic policies frequently targeted Native Americans. As Nielson (2012) notes, Indigenous populations in the United States had very diferent ideas of disablement and mental illness than did the Europeans who took control of them, and these Western notions of disability were ofen applied, especially to Native women, with eugenic consequences to follow. Similarly, in Australia such policies were employed against the Aboriginal population (Wilson, 2018). Eugenics was obviously very closely tied to White supremacy, and held up the perfect White body as emblematic of the unfawed aim of their program. Any individuals who fell short of this image either needed to be brought into conformity, if possible, or kept from breeding. A small minority of eugenic advocates within the country also supported “euthanasia” or infanticide as a potential eugenic solution (Hollander, 1989; McKim, 1901; Ofen, 2003; Pernick, 1996, “Was the Doctor Right?” 1916). Some supported passive “euthanasia” by allowing potentially fatal infectious diseases in institutions to run their course (Ofen, 2003), and William Lennox (1938), an American neurologist, supported the “privilege of death for the congenitally mindless” (p. 466). In 1938 the New York Times reported that a national society had been formed to develop “euthanasia” policy directed at the “incurably ill.” Among its advisory board members were a number of leading eugenicists (“Sanction Is Sought for ‘Mercy Deaths,’ ” 1938, p. 21). Most eugenic supporters, however, felt that support for euthanasia would harm their cause, and that sterilization, a much less controversial measure, was just as efective in reaching eugenic goals.

22  Eugenics, Genetics, and Disability Importantly, 1924 not only marked the year of the most restrictive immigration policy in our nation’s history, at least in regard to discrimination based on nationality, but it also was the year that Virginia passed its “Racial Integrity” law, which prohibited miscegenation (Dorr, 1999). Te law sought to classify all citizens of the state by race and ensure only same-​ race marriages. It would become a model for many other states, especially in the South. According to its most vocal advocate, the policy would save “the dominant race of America from being submerged in the rising food of mongrelization” (Plecker, 1934, p. 107). Te policy would have an overt eugenic favor, as most eugenic supporters throughout the nation perceived a strong connection to exist between miscegenation and moronity as well as other deleterious conditions (Dorr, 1999). As Schoen (2005) noted, “[s]‌ocial workers and Eugenics Board members [in North Carolina] interpreted interracial sexual activities as an indication of patients’ inability to distinguish between the races, which was seen as a clear indication of mental disease or defciency” (p. 95). Eugenic proposals were ofen presented as altruistic measures that actually benefted their victims. Even before a sterilization law had been passed in Indiana, Dr. H.C. Sharp performed sterilizations on institutional residents, and wrote as follows; . . . in many instances we have operated on many against their will, and over their vigorous protest; but in every instance, in the course of a few months following they have either communicated to me verbally or by writing their hearty approval of the operation, claiming that it has relieved them of a great deal of nervousness, enabled them to sleep and increased their physical energy. (Sharp, 1912, p. 204)

E. S. Gosney, a leader of the California sterilization movement, noted in 1929 that eugenic “sterilization can never be a penalty. It ceases to be eugenic when administered as a penalty. Eugenic sterilization of the hereditary defective is a protection to the subject, . . . to the family, to the state, and to prosperity” (“Social Work and Eugenics . . .,” 1929, p. 20). Eugenicists frequently contended that those who would be subject to sterilization would be relieved of the “burden” of children or that such persons would be happier and protected if placed in an institution with others like them. Similarly, sterilization was ofen said to be “voluntary” even if it was required in order to be released from an institution. One eugenicist wrote that “[f]‌ar from resenting

Brief History of Eugenic Control  23 sterilization, the inmates of the Sonoma State Home look forward to it. It is, in a sense, a badge of distinction: it indicates those who are capable of being paroled into the community” (LeBourdais, 1934, p. 436). Institutional confnement similarly was said to beneft its victims as it ofered a measure of protection from the harsh outside world where such persons were viewed as incapable of successfully competing on an equal footing with others. Mott (1894) wrote, for example, that “most imbeciles are happy and useful only as life-​long inmates of an institution” (p. 174). In particular, females diagnosed as feeble-​minded were seen as vulnerable to sexual abuse or easily being seduced, and thus even being confned against their will was perceived as paternalistic. Tis altruism ofen could be seen in the childlike descriptions and treatment of subjects. For example, one recommendation for furthering eugenic institutionalization that was included in a 1919 article in Te Survey, a major social welfare publication of the time, suggested that the legal age of feeble-​ minded individuals should coincide with their presumed mental age, and that they would then be “granted . . . the protection accorded to children of that age” (“Indiana’s Mental Defectives,” 1919, p. 675). Persons who have been diagnosed as having an intellectual disability have frequently been infantilized or treated in a childlike manner, and many eugenic supporters contended that adults who had the “mental age” of children should be subject to state guardianship and whatever form of control that entailed. A Minnesota “Children’s Code” policy gave the State Board of Control broad powers of legal guardianship over illegitimate, dependent, and neglected children and over “defective” individuals regardless of age. It empowered county or probate judges to commit feeble-​minded individuals to state guardianship, even without the consent of a parent or guardian. (Ladd-​Taylor, 2004, p. 286)

Impact on Popular Culture and the Decline of the Movement By the 1920s eugenics had become well ensconced within popular culture in the United States (Nies, 2002). It was featured in movies and magazines, and a staple of state fairs became their eugenic presentations, along with “ftter family” and “better babies” contests (“Eugenics at State Fairs,” 1925; Evans,

24  Eugenics, Genetics, and Disability 1930). Tese contests paralleled the animal competitions at the fairs. Families or babies were measured in a number of ways, and the most “ft” were given awards. Ironically, “[p]‌opular concerns about improving the genetic stock of the nation . . . increased during the thirties even as scientifc skepticism about eugenic methods grew” (Currell, 2006, p. 53). Te increased popularity of eugenics as it was coming under greater scrutiny from scientists and researchers is not at all unusual with pseudoscientifc trends. A similar pattern, for example, can be seen with the earlier phrenology movement: As scientists were turning away from the movement around the time of the Civil War, there was growing popular interest in the topic throughout the nation (Ewen & Ewen, 2006; Gould, 1981a). While the American eugenics movement would live on beyond the Great Depression, the hysterical fear of the moron, which had been its central driving force, lost impetus between 1920 and 1930. Institutional administrators and others came to admit that many presumptive cases of moronity were not genetic, that cultural factors such as poverty put many persons at risk for a feeble-​mindedness diagnosis, and that the belief that persons labeled as feeble-​minded had large numbers of children was much more based on fear than fact. Intelligence tests were also called into question because of the cultural basis for many of the questions, and as presumably “normal” persons increasingly came to be diagnosed as morons (Gould, 1981a). Te movement also lost support from many over time because genetic research did not support many of the claims of the movement’s leaders. “We talk so glibly of so many things about which we know such a little,” T. Swann Harding wrote; “[p]‌ossibly we should each merely like to see more people of our own type appear” (1936–​1937, p. 677). While propaganda in support of eugenics waned during the 1930s, however, procedures such as involuntary sterilizations would continue, largely unnoticed by the general public, for several decades. Te eugenic movement in the United States is ofen viewed in historical hindsight as a radical crusade supported only by White supremacists and assorted kooks. However, the movement gained widespread support that cut across the ideological and political spectrum during its glory years (Leonard, 2005b). English (2004) wrote that during its peak in the 1910s and 1920s, “eugenics became so widely accepted that it might be considered the paradigmatic modern American discourse” (p. 2), and Leonard (2005a) wrote that it “is hard to overestimate the infuence of Darwinian and eugenic ideas in the Progressive Era” (p. 202). Presidents such as Teodore Roosevelt,

Brief History of Eugenic Control  25 Calvin Coolidge, Warren Harding, and Woodrow Wilson supported certain eugenic policies, and well-​respected personalities such as Alexander Graham Bell and Charles Lindbergh were vocal supporters (Bell, 1914; English, 2004; Leonard, 2005a, 2005b; Lombardo, 2008; Roosevelt, 1914). Even some leaders in the African American community at the time, such as W. E. B. Du Bois, supported certain eugenic proposals (English, 2004). Rather than being a forerunner of Nazism, eugenics coalesced with many elements of Progressivism in the United States, and shared many of its goals (Leonard, 2005a, 2005b). Tis important issue will be discussed in greater depth in Chapter 4. It is true, however, that as the movement progressed it did move in the direction of a more radical or racist form. By the mid-​1920s many of those who had leadership roles within the movement (e.g., Davenport and Laughlin, Madison Grant and Lothrop Stoddard) espoused Nordic or White nationalist ideals, directed at stigmatizing and restricting not only African Americans but also immigrants from what were considered to be non-​Nordic nations. Tese individuals believed that the various “races” could be viewed along a hierarchical continuum, with greater value given to those belonging to the presumably “higher” or “more evolved” Nordic, Aryan, or White race (Gould, 1981a). Tey also believed that miscegenation was diminishing the vitality of this predominant race, in the United States as well as Europe. Tis segment of the American movement, then, directly infuenced German notions of eugenics, both prior to and during the Tird Reich (Kühl, 1994).

German Eugenics Under the Nazis While a eugenic faction had developed in Germany prior to Hitler’s ascension to power, it had little success in the formation of eugenic policies. Indeed, infuential German eugenicists looked with envy at the gains wrought by the American eugenicists, especially the state sterilization laws (Kühl, 1994; O’Brien, 2011a). One fear ofen expressed by eugenics supporters is that a given foreign power, especially an unfriendly one, can make itself economically and militarily stronger by implementing their own selective reproductive policies (McWhorter, 2009). Te argument maintains in part that such a nation can then devote markedly fewer resources to supporting its “dependent” population, and thus have greater ability to devote these resources to more important public goals, including industrial development and

26  Eugenics, Genetics, and Disability militarization. Tus, during the 1920s German eugenicists decried the fact that the United States was becoming a threat by strengthening itself (Proctor, 1988) in this way, and then during the 1930s their American counterparts warned that the Germans under Hitler were now beating them at their own game (“U.S. Eugenist Hails . . .,” 1935, p. 5). Hitler’s own interest in eugenics was an integral component of his overall scheme of race hygiene (or, to use the German term, rassenhygiene) and was widely disseminated a decade before his rise to power throughout the pages of Mein Kampf (1971). Tere was a strong theoretical connection between Hitler’s desire to rid the nation of its mentally and physically disabled population and his anti-​Semitic crusade. Both were parallel eforts to strengthen a national body that he believed had become corrupt and diseased, and threatened to spread this disease to the healthy components of the German Volk (Bengtsson, 2018). According to Anne Harrington (1995), both Jews and the “carriers of inferior genetic material” were viewed by state physicians as imminent threats to the whole and sound German “body” (p. 373). Indeed, the organism metaphor, which promotes a comparison between the human and national “organisms,” formed the foundation of Hitler’s overall philosophy, and he viewed himself as a “doctor for the nation” who was called upon to cure its sickness before the country fell victim to racial and moral degeneracy (Koenigsberg, 1975; Musolf, 2010; O’Brien, 2010, 2018). In Hitler’s mind, persons with hereditary disabilities not only were diseased but also were a disease, unknowingly subverting the health and vigor of the national organism. According to this line of thought, the main diference between persons with hereditary diseases and the Jews was that the latter were overtly conspiratorial in their perceived eforts to destroy the nation, rather than inadvertently leading the nation to ruin, which those with inherited disabilities were in the process of doing. Hitler was well aware of the American eugenics movement, and was familiar with German translations of some of the more important books and articles on the topic that had been written by leaders of the U.S. movement (Kühl, 1994). He surrounded himself with individuals who shared his eugenic beliefs, the most important being the leader of the SS and his right-​hand man, Heinrich Himmler. Not only did Himmler have primary responsibility for carrying out the extermination of the Jews, but his interest in plant and animal husbandry led to an obsession with the creation of a vibrant, strong

Brief History of Eugenic Control  27 Aryan race. He required, for example, applicants for the SS to prove that there were no Jews nor persons with hereditary disabilities in their family tree for many generations (Höhne, 1971).

German Eugenic Policies Within his frst year in power, Hitler instituted a sweeping eugenic sterilization law that was targeted at persons with mental and physical disabilities (“Eugenical Sterilization in Germany,” 1933). Tis policy, which was directly patterned afer the model state eugenic sterilization law developed by the Eugenic Record Ofce and passed in many states, would put Germany in the forefront of the eugenics movement, and by the time the program ran its course approximately 400,000 German citizens, the vast majority being persons diagnosed as insane or feeble-​minded, would be forcibly sterilized (Proctor, 1988; Weindling, 1989). Institutions throughout the nation were forced to comply with this law, and to register persons who were diagnosed as being hereditarily disabled, and share this information with the state. Eugenicists in the United States were for the most part vocal supporters of the German sterilization law, though, as noted above, by this time the American program was largely led by its more radical members (Kevles, 1985). Discussing the policy, Leon Whitney of the American Eugenics Society wrote in 1934 that “we cannot but admire the foresight revealed by the plan in general, and realize that by this action Germany is going to make herself a stronger nation.” He continued on to write that “American Jewry is naturally suspecting that the German chancellor had the law enacted for the specifc purpose of sterilizing the German Jews, but I believe nothing to be further from the truth” (pp. 137–​138). Clarence Campbell from New York, the president of the Eugenics Research Association, was quoted as follows in a 1935 New York Times article: Te leader of the German nation, Adolf Hitler, ably supported by Frick [Dr. William Frick, Minister of the Interior] and guided by the nation’s anthropologists, eugenists and social philosophers, has been able to construct a comprehensive racial policy of population development and improvement that promises to be epochal in racial history. (“U.S. Eugenist Hails Nazi Racial Policy,” 1935, p. 5; brackets in original source)

28  Eugenics, Genetics, and Disability In conjunction with the 1935 marriage law that restricted intermarriage between Jews and Aryans, the Nazis also instituted a policy restricting marriage of anyone with a hereditary disability. Te only exceptions were when each of the partners fell into the category of being hereditarily diseased, and each could provide valid proof that they had already been sterilized. Te Germans justifed the disability marriage policy by pointing to restrictive eugenics marriage policies in the United States. Tey likewise attempted to provide justifcation for the 1935 Aryan/​Jewish marriage restriction policy by noting its similarities with anti-​miscegenation laws that were in place in many Southern U.S. states, and especially the Virginia Racial Integrity law. In fact, according to Fischer (2012), the Nazis “argued that they were more liberal than the United States,” since in Germany “a person who was one fourth Jewish could be considered Aryan in some situations; [while] in the United States, a person who was 1/​32 black was considered black” (p. 1099). As William Plecker, who was responsible for implementing the Virginia “one drop” rule, wrote in 1934, “[t]‌his law for the frst time defnitely defnes a white person as one with no ascertainable degree of negro blood” (p. 105). In 1939, with the onset of their attack on Poland that marked the beginning of World War II, Hitler’s government covertly implemented its most horrendous policy to eradicate persons with disabilities from the Reich, the T42 “euthanasia” program. While the Nazis had been discreetly bringing about the deaths of thousands of disabled persons in institutions over the previous years, the T4 program instituted the assembly-​line killing apparatus that would come to characterize the Jewish Holocaust. Six asylums were employed, and those marked for death were brought to these facilities surreptitiously. Each facility included a gas chamber, where victims were killed via carbon monoxide poisoning.3 Te Nazis realized that they could get away with a “mercy killing” program more easily under the cover of war. Who, they believed, would protest the “euthanasia” of “useless eaters” when the most worthy youth of the nation were themselves putting their lives on the line for their nation? Prior to their utilization at the Holocaust sites, gas chambers and incineration units were frst installed and “perfected” in six mental institutions. Over the course of a 4-​year period, these facilities took in and murdered approximately 70,000 “hereditarily disabled” persons from throughout Germany, with the vast majority of these being persons labeled as “feeble-​minded” or “insane.” While there was never a formal announcement about the program, many in Germany knew of its existence, especially since many of the asylums

Brief History of Eugenic Control  29 were, unlike most Holocaust sites, within or near German towns. In order to tamp down potential criticism of the program, the Nazis created a series of documentaries and movies that depicted the “horrible” state of living with a severe disability, and the kindness of allowing such persons “deliverance from their sufering” through a “mercy death” (Burleigh, 1994). Following discontinuation of the formal T4 program in 1941, the Nazis returned to their previous, more individualized, methods of bringing about the deaths of persons with disabilities, such as starvation and lethal injections (Aly et al., 1994; Burleigh, 1994). While the focus in this book has been on eugenic practices as they arose in both the United States and Nazi Germany, it’s important to add that during or within a few decades of the “alarm era” in the United States, eugenics had been introduced to a degree on a worldwide basis. Earlier the Australian program was noted, and sterilization or other eugenic programs were also instituted in Canada, again largely targeted at the Indigenous population. Finland, Sweden, and Denmark had their own programs, as did France, Russia, Brazil, and others (Black, 2003; Carlson, 2001, Wilson, 2018). In his chapter on “Eugenic Imperialism,” Edwin Black (2003) describes the growth of eugenic programs as a result of the U.S. policies. Importantly, those in power within these nations had a broad range of political positions, and thus eugenic thought cut across the ideological spectrum. With the full realization of the extent of the Nazis’ programs, eugenics largely became a taboo subject for several decades. While there was a direct connection between the American and German eugenic programs, this had much more to do with the homogeneity of the membership of the American movement during the 1930s as opposed to the programs themselves. In other words, most moderate supporters of eugenics within the United States had lef the movement prior to 1930, or at least had tempered their support. It would be oversimplifying matters greatly to imply that eugenics meant the same thing in both nations, or even to assume it meant the same thing to its principal supporters in the United States in 1910 and 1930. In its philosophy as well as its goals, eugenics had evolved over time. As many scholars have noted, it is also a mistake to connect eugenics too closely with Nazism. To quote Burke and Castaneda (2007), “equating eugenics with the horrifc dimensions of the holocaust obstructs recognition of eugenic goals and the widespread acceptance of eugenicists not just by an uneducated public, but by leading scientifc, medical, and academic communities well into the mid-​ twentieth century” (p. 8).

30  Eugenics, Genetics, and Disability Among leading eugenicists in each nation, however, the principal target group for eugenic control remained fundamentally the same: persons with mental and physical disabilities. Tis was, as noted, taken to be the population of individuals that was most responsible for degeneration within each country. Tose who were labeled as morons were especially viewed as victims of a bad hereditary taint that could not be overcome by any form of education, persuasion, or environmental manipulation. Many argued that it was only by cutting of these lines of heredity that the nation would be saved from degeneracy. While those who were diagnosed as feeble-​minded were the principal targets of eugenic control, there was much discussion about the status of other groups of persons with disabilities, and the extent to which they too should be targeted by eugenic policies. It is this issue to which we now turn.

Notes 1. Metzler (2016) notes that one of the terms for “natural” fools during the Medieval period was moriones. She diferentiates between natural fools, who presumably were intellectually disabled, and artifcial fools, who simply acted in stereotypically foolish ways in order to earn a living, for example as court jesters. 2. Te program was referred to as the T4 program because its administrative ofces were located at #4 Tiergartenstrasse in Berlin. 3. For the gas chambers used in the Jewish Holocaust, the Nazis switched to Zyklon B, a pesticide and delousing agent. Ironically, Zyklon B had been employed in weaker strength several decades prior to this on the southern U.S. border, not for killing purposes but to ensure that Mexican immigrants into the country were free of lice (Cockburn, 2007). Both examples point again to the perception of the “other” as a potentially contaminating force (O’Brien, 2018).

3 Eugenics and Persons with Disabilities Is it not a . . . serious matter to bestow life on such an individual—​ to infict on them sufering which comes with epilepsy, the constant danger to life and limb, which they undergo? to give them a life of social inferiority, deprived of true and congenial companionship, that makes them almost strangers among their own kin? Has the child no right to good Parentage? If he has, we should respect that right. Wilmarth (1902, p. 156)

As noted previously, the rediscovery of Gregor Mendel’s laws of heredity in 1900 proved to be an extremely important factor in the growth of the American eugenics movement.1 While some advocacy for a eugenic program existed prior to this point, supporters realized that the nature of trait transmission was an extremely important question that needed to be answered before such a program could be launched in earnest. If environmental or educational modifcations could improve the status of those who were considered to be “unft,” then a positive evolutionary path could be fostered by developing such modifcations. Mendel’s laws were therefore important in providing a focal point for the eugenicists’ “target of control.” If social problems were hereditary in nature, at least for the most part, such problems might be efciently dealt with by reducing procreation among those with presumably hereditary conditions. Educational and environmental uplif would do little to increase the capacity of such families if their “impairments” were seen as intrinsic and largely unalterable (Gould, 1981a; Kevles, 1985). Very rapidly following the rediscovery of Mendel’s laws, a thriving research infrastructure to discover the nature of hereditary transmission in not only humans but also other animals and plants was launched in the United States. At least early in the evolution of this development, there would be a good deal of cross-​fertilization between eugenicists and genetic researchers, and indeed many geneticists had a foot planted frmly in both camps, hoping Eugenics, Genetics, and Disability in Historical and Contemporary Perspective. Gerald O’Brien, Oxford University Press. © Oxford University Press 2023. DOI: 10.1093/​oso/​9780197611234.003.0004

32  Eugenics, Genetics, and Disability that research on fruit fies and other more basic organisms would eventually lead us to a greater knowledge of human heredity and improvement, and perhaps even illuminate the path to a more utopian society (Carlson, 2001). Leading eugenicists such as Charles Davenport, the director of the Eugenic Record Ofce, ofen argued that while euthenics, or environmental control, was worthwhile and might beneft the population, eugenics was more important since there was a clear genetic explanation to most types of feeble-​mindedness and the numerous social problems they were purportedly responsible for. Environmental reforms, most eugenic advocates agreed, would do little to improve such persons. As he wrote in 1921: It appears probable, from extensive pedigrees that have been analyzed, that feeble-​mindedness of the middle and higher grades is inherited as a simple recessive, or approximately so. It follows that two parents who are feeble-​ minded shall have only feeble-​minded children and this is what is empirically found. (p. 393)

Especially early in the movement’s history, many supporters of eugenic reform, including Davenport, believed in the unit trait theory, that many human characteristics were the product of one hereditary component (Davenport, 1913). While the term “gene” was employed during the eugenic period to describe the biological organism that transmitted hereditary traits, the actual discovery of genes and the mechanism of transmission lay in the future.2 If the unit trait theory held true, eugenic control would be a simple matter of restricting procreation among those having specifc characteristics. As the movement progressed, it became clear that heredity was a much more complicated afair than eugenicists were comfortable with. Te heritability of feeble-​mindedness came to be readily accepted by most eugenicists in large part based on eugenic family studies such as Henry Goddard’s famous 1912 book on the Kallikak family (Goddard, 1912a; Gould, 1981a) and Oscar McCullough’s research on the “Tribe of Ishmael” (Deutsch, 2009). Tese studies were based largely on Dugdale’s earlier analysis of the “Juke” family (1877, 1910). Trough the extensive use of feld researchers who studied the family trees of institutionalized persons and conducted interviews with individuals who knew these subjects or their descendants, these publications presumably demonstrated that most negative social traits ran in family lines. Most importantly, using newly developed intelligence tests, the researchers contended that the vast majority of

Eugenics and Persons with Disabilities  33 the Kallikaks and similar families were characterized by a massive degree of inherited moronity. Many professionals, especially those who worked in institutions serving feeble-​minded persons, shared this belief even before they had knowledge of either intelligence testing or Mendel’s laws. Martin Barr (1898), for example, a leader among asylum administrators, wrote that “[n]‌o other class of defectives transmit ill with such certainty as the feeble-​ minded” (p. 483), and Bicknell (1895–​1896) added that “[t]he curse of feeble-​ mindedness descends from parents to child as no other defect does” (p. 81). Te intelligence test, which was developed in France by Alfred Binet and introduced into the United States shortly afer the turn of the century, was helpful to eugenic researchers in diagnosing “morons” in the population. As noted in Chapter 2, this term was coined early in the century by Henry Goddard to describe that segment of the feeble-​minded population that graded over into the “normal” population (Goddard, 1910; also see Gould, 1981a) and therefore could go “undiagnosed” in the community (Stoddard, 1923). As noted, it was this large group of “higher functioning” feeble-​ minded persons who were said to pose the greatest threat to the community. As the intelligence test came to be employed more frequently, ever-​increasing numbers of morons were found to be living—​and procreating—​throughout the country. In 1918 social work pioneer Jessie Taf wrote, “Tere is no question that the swif rise of the mental test as a center of interest and experiment in applied psychology has had much to do with the growth of popular recognition of feeblemindedness as a social problem” (pp. 543–​544). As supporters of eugenic policies more fully embraced the presumption that moronity was the core feature that identifed the “unft” segment of the population, many also believed that it was moronity that caused or at least set the stage for secondary social problems (MacMurchy, 1916). Nicole Rafer, in discussing one of the family studies, wrote (1988) that the study focused heavily on feeble-​mindedness as the central identifying feature of family members, but was “also concerned with alcoholism, blindness, criminality, epilepsy, insanity, sex ofending, syphilis, and the propensity to wander” (p. 6). Some of the family studies, Rafer noted, pointed to the centrality of feeble-​ mindedness in the pseudonym that was given the family. Te “Family of Sam Sixty,” for example, acquired its name from the presumptive low IQ of the progenitor of the family (p. 28; see also Kostir, 1916). In other cases the names were simply demeaning. Davenport’s wife, Gertrude, who worked with him at Cold Spring Harbor, wrote (1907) about a family from Switzerland.

34  Eugenics, Genetics, and Disability Like the “dysfunctional” families that would soon be studied in the United States, the family was presumably marked by degeneracy, insanity, laziness, and miscegenation. Te name given to this family belied the value that eugenicists accorded such groups; they were referred to as the Zero family. According to Jarvenpa (2018), in at least one case a family name was an acronym related to the large degree of miscegenation that presumably marked the family, as it was referred to as the “Win (White, Indian, Negro) Tribe” (p. 29). In many cases, he notes, intermarriage between Whites not only with African Americans but also with Native Americans stamped a family, especially a poor one, as likely to draw the interest of eugenic feld workers. Te focus on moronity benefted eugenic advocates in multiple ways. First, drawing on the intelligence test as a “scientifc” measure of feeble-​mindedness allowed them to argue that they were not being arbitrary in their determination of which individuals were being targeted for control. On the other hand, however, diagnoses were based not only on intelligence test results (not that these were in any way objective or accurate measures of inborn knowledge) but also on the subjective presumptions and judgments of diagnosticians. As a result, persons from multiple marginalized groups, including those living in poverty, racial minorities, undesirable immigrant populations, and others, could easily be pulled into the feeble-​minded category (Gould, 1981a). As Jay Dolmage (2011) wrote, “ ‘feeble-​mindedness’ became a useful categorical wastebasket” (p. 47). Most of those labeled as inferior were either living in poverty, had little formal education, and/​or were members of new immigrant populations. As such they were not apt to advocate for themselves and had little power to fght the growing eugenic infrastructure. Many couldn’t even speak or understand English, and, as Gould (1981a) noted, the early intelligence tests were largely based on American cultural knowledge, which new immigrants would obviously have little awareness of. To the supporters of eugenic control, feeble-​mindedness then was the perfect target classifcation for proposed policies. During the eugenic alarm period, however, there were some eforts to bring those who fell into additional disability categories under the umbrella of eugenic control. For a variety of reasons this would be difcult, as these conditions carried with them a number of problematic questions and concerns that moronity didn’t. Nonetheless, they raised the issue of what direction the eugenic movement would take in respect to those who might be subject to its policies of control. Once a social control infrastructure establishes and legitimizes itself, it will turn its attention to growth and the enhancement of its sphere of authority.

Eugenics and Persons with Disabilities  35 Tree of the most prominent disability groups that were included in this discussion were those diagnosed as having mental illness, epilepsy, and deafness.

Persons with Mental Illness Prior to the eugenic era, some psychiatrists and physicians saw eugenic policies that would limit procreation among persons with chronic mental illness as an important possible factor in controlling the genetic spread of such conditions. One is quoted as saying “I am, indeed, not sure that in the progressive future, it will not be deemed a measure of sound policy and commendable statesmanship to stamp out insanity, by castrating all the insane men and spaying all the insane women” (cited in Haller, 1963, p. 30). Troughout the eugenic period, many supporters of social control policies included insanity alongside feeble-​mindedness as a primary indicator of eugenic unftness. To those eugenicists who weren’t experts in medicine or psychiatry, in fact, there was little if any diferentiation between the two groups. Many simply spoke of persons with mental disease, mental defciency, moral imbecility, or other such vague terms, which usually included persons from both broad categories. Many experts, however, saw a clear distinction between insanity and feeble-​mindedness even as early as the mid-​1800s, when large-​scale institutional development for persons with mental illness expanded greatly. While most eugenicists in the United States were in agreement about the advancing “menace” of feeble-​mindedness and the necessity of eugenic policies to stop the spread of the condition, persons with mental illness, for a number of reasons, did not excite a similar fear. Tis isn’t to say, however, that those diagnosed as being insane didn’t solicit fear on other accounts. First, feeble-​mindedness was seen largely as a singular condition, varying only in its extremity. While some professionals in the feld noted that conditions such as Down syndrome could be classifed as a specifc type of feeble-​mindedness, such cases were seen as encompassing only a small percent of the whole. Mental illness, however, was known to be of various types, each difering from the others in a number of ways. Especially important were questions about the heritability of the various forms of mental illness. While many researchers noted that certain types demonstrated an inheritance pattern, there was much uncertainty about this (Holmes, 1914, p. 307),

36  Eugenics, Genetics, and Disability and many eugenicists felt that mental illness arose from a combination of hereditary and environmental causes, which also made eugenic approaches of questionable efectiveness (Popenoe & Johnson, 1933, p. 126). Te diagnosis of moronity was also accepted by most specialists as more accurate than the various forms of insanity. Te intelligence test led most to believe that feeble-​mindedness was being accurately measured, whereas insanity was much more speculative, especially in its milder stages. “In general,” Michael Guyer wrote in 1927, there is more doubt about the inheritability of some of the insanities than about cases of mental defciency. Te term insanity is merely a loose descriptive one, and we shall gain little defnite knowledge about the inheritance of such maladies until we study each separate insane diathesis specifcally. Psychiatrists recognize many diferent forms of insanity, some of them very distinct from others and the product of unrelated underlying causes. . . . It is almost impossible in some instances to tell just where the border-​line between an abnormal and a normal constitution lies. (p. 341)

Te life stage when persons might be diagnosed is also an important issue in whether eugenic policies were viewed as appropriate for those with mental illness. Many of those who are so diagnosed only exhibited symptoms (at least to the extent that they came within the purview of professionals) during the middle or later stages of their lives, ofen afer they (especially females) had moved much of the way through their procreative years. Certainly eugenic policies would be of only partial value in diminishing such conditions then. As Popenoe and Johnson, leaders of the California eugenics program, wrote (1933), “Te fact that only one in every four of the frst admissions to American psychiatric hospitals is as early as 30 years of age shows a serious limitation of this sort of segregation from a eugenic point of view” (p. 138). Since moronity was believed to be present from birth, it was seen as a much more preventable condition, given the possibility of early diagnosis and procreative control of those so diagnosed (pp. 127–​128). For example, Carrie Buck’s daughter Vivian was supposedly diagnosed as an imbecile when she was still an infant (Lombardo, 2008; Smith & Nelson, 1989). It was on the surety of this diagnosis that Oliver Wendell Holmes’s infamous “three generations of imbeciles” rested. Additionally, much of the severely mentally ill population was already institutionalized when the eugenic era began. As Ferguson (1994) wrote:

Eugenics and Persons with Disabilities  37 Te rates of institutionalization for the two populations . . . difer dramatically. Even at the height of the eugenics era, less than 10 percent of the identifed population of mentally retarded people was actually confned in large, public institutions. By the end of the nineteenth century, the comparable rate for mental illness was in the 70 to 80 percent range. (p. 10)

One caveat related to the above quote is that, as noted previously, the diagnosis of mental illness was very tenuous at this time, and it was likely only those with fairly severe problems who came under such a diagnosis. A major reason for the fear of sweeping moronity was that the vast majority of such individuals were believed to be walking around unrestrained within the community. Eugenicists would argue that the nation’s success in institutionalizing those classifed as insane supported similar measures directed at morons. “Many progressive states,” Fernald (1904) wrote, “have already adopted this policy [permanent segregation] in the care of the insane. Te feeble-​minded have an equal or greater claim in every way” (p. 388). Moreover, the involuntary institutionalization procedures that were already in place in some states were especially apt to be employed against females with mental illness (Geller & Harris, 1994). Especially as Freud’s writings began to be embraced in the United States afer the First World War, many specialists in the area believed that persons exhibiting insanity could be assisted to regain some measure of premorbid functioning. Such hopes did not exist though in the case of feeble-​ mindedness. Indeed, the term “premorbid functioning” was largely meaningless in discussing a population that was viewed as impaired from (or even prior to) birth. A prevailing belief during the eugenic period was that many cases of mental illnesses such as anxiety or hysteria developed largely from the pace of modern urban life (Popenoe & Johnson, 1933, p. 127). Too much stimulation presumably led to such conditions. Environmental etiological causes such as this ran counter to the hereditary focus of the eugenicists. If one’s environment caused or exacerbated the symptoms of a mental illness, it was possible that other environmental modifcations or therapeutic intervention could diminish it. Trattner (1968) writes that Homer Folks, for example, an important social welfare researcher of the day, believed that “a large degree of insanity was preventable by hygienic measures” while feeble-​ mindedness required institutionalization or sterilization (p. 129). Finally, mental illness was frequently seen in even the “best” of families. While there was a strong overlap between moronity and poverty, in part

38  Eugenics, Genetics, and Disability simply because this is where it was usually looked for, but also because many poor children were not subject to compulsory education (ofen because they were engaged in child labor to support their families), this overlap did not exist with mental illness, at least to such a degree. Bringing the members of well-​to-​do families under eugenic control carried with it difculties that did not arise with control over a group of persons the majority of whom were living in poverty. Even when cases of feeble-​mindedness occurred in upper-​ class families, most eugenicists could fnd a ready explanation for the condition other than heredity, and such families could protect their members from eugenic intrusion. Tere were a few eugenicists who argued that various aspects of insanity made this population a particularly important target for eugenic control, even if hereditary transmission was not proven. Lothrop Stoddard, for example, noted (1923) that Unlike feeble-​mindedness, insanity is ofen associated with very superior qualities, which may render the aficted individuals an acute menace to society. Te feeble-​minded never overturned a state. An essentially negative element, they may drag a civilization down toward sodden degeneracy, but they have not the wit to disrupt it. Te insane, on the other hand, are apt to be intensely dynamic and to misuse their powers for destructive ends. (p. 98)

For the most part, however, eugenic rhetoric was fueled by a fear of moronity rather than insanity. Importantly, however, while eugenic propaganda did not largely target persons with mental illness, restrictive procreation policies had a substantial impact on both populations. According to Osborn (1951), “the total number of sterilizations performed in the United States up to January 1, 1950 was 50,707, of which 22,844 were on insane cases, and 25,903 on feeble-​minded; 1860 were sterilized for other reasons” (p. 59). Most marriage restriction policies covered both populations, and certainly a large number of the forcible institutionalizations of persons with mental illness during the eugenic era arose at least in large part from a fear of procreation. It should be noted that in many cases where those adjudged to be insane were subject to sterilization, ofen the rationale was not the strong possibility of hereditary transmission but rather concerns about whether they (especially women) would be appropriate parents (Kline, 2001).

Eugenics and Persons with Disabilities  39

Persons with Seizure Disabilities Troughout the eugenic period, but especially during its formative years early in the century, persons with epilepsy were a principal target of eugenic control. To a large extent this was due to the fact that feeble-​mindedness and epilepsy were closely linked, at least in the minds of eugenicists. To quote Wilmarth (1902): [T]‌ he epileptic and imbecile . . . are almost inseparably connected. Considerably over one-​half of the feeble-​minded have, at some time of their life, sufered from convulsive disorders as a complication of their condition; while, on the other hand, only a small percentage of confrmed epileptics escape without mental deterioration. (p. 153)

Michael Guyer (1913) added a decade later that “[a]‌lthough epileptics are not classed as imbeciles ordinarily, as a matter of fact no sharp distinction can be drawn between the two classes” (p. 37). Especially early in the movement, some eugenicists believed in the theory of degeneration, which held that in “problematic” families each generation would likely have a more severe form of “degeneracy” than the previous generation. Tus some believed that it was parents with epilepsy who were most apt to bear children who were feeble-​minded (Johnson, 1896). Not only did many eugenicists perceive persons with seizure conditions to be feeble-​minded, but they also contended that such persons were incapable of controlling themselves and in many cases were “criminalistic,” exhibiting a higher degree of violence than most of those who were labeled as feeble-​minded. Tey were said to “be dangerously antisocial, epilepsy being frequently connected with the worst crimes of violence. Te spreading of epileptic strains among sound stocks is unquestionably disastrous, causing grave social dangers” (Stoddard, 1923, p. 99). Mott (1894) wrote that “[e]‌pileptics stand in even more necessity of humane and close custody than other imbeciles” (p. 171). To some degree this pejorative view of persons with epilepsy was fostered by the writings of the early Italian criminologist Cesare Lombroso in the latter half of the 19th century. Lombroso was interested in the classifcation of various groups, and, like the phrenologists of the same age, was compelled to study the relationship between physical characteristics (both congenital and

40  Eugenics, Genetics, and Disability acquired) and the presumptive internal qualities or behaviors of individuals, specifcally focusing on the “criminalistic” portion of the populace (Ettinger, 1932; Gould, 1981a). Lombroso’s most infuential text was the book L’uomo Delinquente (Te Criminal Man), which was published in 1876. Writing in the wake of Darwin, Lombroso proposed a theory that criminals constituted an atavistic throwback to an earlier period of human evolution. Such individuals were, he said, representative of a primitive, more brutal stage in our cultural past, somewhere presumably between humans and apes. Lombroso utilized phrenology to support his theories, and held the opinion that criminal tendencies originated in the individual’s biological constitution. He contended that he saw apelike characteristics in the physical features of criminals, which he believed provided evidence to support his theory (Gould, 1981a, 1981b; Lombroso, 1968, 2006). Lombroso was especially interested in the correlation between criminality and epilepsy, and he contended that the majority of those with epilepsy would eventually become criminals. Such individuals, he said, were unstable and could not be trusted to control themselves. Tey were likely to turn evil at any time, and therefore their social control was warranted (Lombroso, 1968, pp. 365–​375; also see Lombroso, 2006). According to Steven Jay Gould, Lombroso went so far as to recommend a preventative criminology, reasoning that “society need not wait (and sufer) for the act itself.” For since “physical and social stigmata defne the potential criminal,” such persons should “be identifed (in early childhood), watched, and whisked away at the frst manifestation” of criminal behavior (Gould, 1981b, p. 225). Tis fear of persons with epilepsy worked its way into early mental health writings. Henry Maudsley, one of the best-​known psychiatrists in Great Britain, wrote in 1898 that there was a strong hereditary connection between epilepsy and insanity. He added that “the most desperate instances of homicidal impulse are met with in connection with epilepsy. . . . Te diseased action has been transferred from one nervous centre to another, and instead of a convulsion of muscles the patient is seized with a convulsion of ideas,” which ofen results in the desire to commit homicide or other crimes of violence (p. 179). Having a strong interest in the physiological indicators of psychological and behavioral phenomena, or in the hereditary etiology of criminal behavior, many of the American eugenicists were extremely interested in Lombrosian theories. His belief in the degeneracy of persons with epilepsy

Eugenics and Persons with Disabilities  41 tied in nicely with the eugenic denigration of moronity, especially since the two conditions were presumably closely related to one another. Just as they supported the sterilization or widespread institutionalization of persons with feeble-​mindedness, many eugenic supporters called for “sexual segregation” of persons with epilepsy. One eugenicist even noted that in 24 patients studied who had epilepsy, “there was marked improvement in regard to the occurrence of the attacks” following involuntary sterilization (“Sterilization of the Unft,” 1905, p. 129). Again, eugenicists could use such “data” to demonstrate the altruistic nature of their social control measures. As the eugenics movement evolved, however, epilepsy became a relatively minor target of control. Tis was due in large part to the fact that many eugenicists believed that targeting morons would inevitably include social control of those with epilepsy, since the latter was viewed as one of many indicators of the former condition. As eugenic policies came to be increasingly employed against those classifed as morons, it was assumed that most persons with epilepsy were falling within this expanding “net.” Additionally, a number of writers began to question earlier assumptions about the hereditary nature of epilepsy. For example, the leaders of California’s eugenic program, Popenoe and Johnson, contended (1933) that “[t]‌he ancestry of epileptic patients usually shows a few cases of epilepsy and many other evidences of weak nervous systems such as alcoholism. Cases in which the epileptic actually comes of epileptic parents are the exception” (p. 126).

Persons Who Are Deaf Individuals with sensory disabilities, and especially those who were deaf, for the most part were never a central target for eugenic control in the United States during the alarm period. Many eugenicists would include such individuals, especially those with “hereditary” conditions, into the general class of “degenerates,” but they were not a group that attracted a great deal of attention from eugenicists. In part this was due to the fact that many visual and hearing impairments were acquired rather than hereditary, and little was known at the time about the hereditability of such conditions. Popenoe and Johnson (1933) believed that in only about 10% to 20% of such cases was heredity the primary etiological explanation. To a large degree, two important personalities of the late 19th and early 20th century had a great deal of impact

42  Eugenics, Genetics, and Disability over how persons with sensory disabilities would be perceived by American eugenicists. Tese were Alexander Graham Bell and Helen Keller. Bell was very interested in deafness, and both his wife and mother were deaf (Greenwald, 2004). His invention of the telephone, moreover, came about from his eforts to communicate with deaf persons. Bell believed that hereditary deafness arose largely from intermarriage within the deaf population, especially since many such individuals went to segregated schools, were inculcated into deaf culture, and largely interacted with other deaf persons. He argued that the integration of deaf persons within the broader community would foster their marriage with non-​deaf persons. Since he believed that such intermarriages naturally led to hearing children (since this trait was, to use a term that would later be coined by geneticists, “dominant”), he decried the expansion of segregated environments and any other social practices that would encourage deaf persons to congregate together, leading to the likelihood that they would marry one another and bear deaf children (Baynton, 1996; Haller, 1963; Winefeld, 1987). Bell was an early leader in the eugenics movement. Like some others who shared an interest in eugenics, he engaged in animal breeding as a hobby. Bell (1914) was primarily interested in “positive eugenics,” which would encourage the birthrate among the more “ft” segment of the population, and he argued that only through such policies would eugenicists reach their major goal of improvement of the species. As the movement came to focus almost exclusively on negative eugenic policies such as involuntary sterilization, however, he became increasingly disenchanted with it (Black, 2003). Helen Keller had a profound symbolic and practical impact on the image the public, as well as professionals, had of persons with sensory disabilities. Her ability to overcome what seemed like insurmountable odds, being both blind and deaf, led people to believe in the hidden potential of such individuals. A fundamental reason why those with sensory disabilities were not targets of eugenic control was that most were not viewed as mentally impaired. Te story of Helen Keller demonstrated to people that even when such persons might appear that way, this could simply be due to communication inabilities or a lack of educational opportunities. One of the aspects of her story that makes it so compelling is the realization that had it not been for Anne Sullivan’s perseverance, Helen likely would have been institutionalized or otherwise relegated to the world of imbecility. Helen Keller herself fostered this dichotomy between persons with physical and mental impairments, as well as the belief that they should be given

Eugenics and Persons with Disabilities  43 diferential consideration and treatment. In a 1915 letter published in the New Republic she responded to the recent “Bollinger baby” case, whereby a Chicago physician allowed, with the consent of the parents, a newborn to die in large part because the baby was thought to be intellectually disabled (Keller, 1915; also see Gerdtz, 2006). Keller (1915) wrote: It is the possibilities of happiness, intelligence and power that give life its sanctity, and they are absent in the case of a poor, misshapen, paralyzed, unthinking creature. I think there are many more clear cases of such hopeless death-​in-​life than the critics of Dr. Haiselden realize. Te toleration of such anomalies tends to lessen the sacredness in which normal life is held. (p. 173)

Kim Nielson (2001) contends that while Keller was the primary spokesperson and fundraiser for the American Federation for the Blind, and frequently advocated for human rights for those with sensory disabilities, she was largely isolated from the larger disability community and “never experienced or saw herself as part of a minority or oppressed group” (p. 283). Paul Lombardo (2008) adds that Keller gave a speech before the Virginia legislature on another issue at the same time that a eugenic sterilization bill was being considered, but she didn’t comment on the sterilization bill. As has been widely discussed in the disability literature, during the decade prior to the beginning of the eugenic era Bell engaged in an ongoing dispute with Edward Gallaudet over the education of deaf persons. While Gallaudet (afer whom the university in Washington, DC, is named) argued that such individuals should learn and be able to use sign language, Bell felt that a separate mode of communication such as signing would serve to isolate them and reinforce their segregation from society, and thus support their marriage to one another (Winefeld, 1987). Te two wrote back-​and-​forth articles in the journal Science supporting each one’s particular stance (Bell, 1892; Gallaudet, 1890). According to Nielson (2001), Helen Keller supported Bell’s philosophy. While the use of sign language has great importance for the history of deafness and deaf education, it may seem to have little pertinence to eugenics. However, Bell’s belief that those who were deaf needed to interact within the broader community and approximate as much as possible normative communication capabilities bears a direct relationship to his eugenic beliefs. Indeed, his contention that deaf individuals should not be isolated and

44  Eugenics, Genetics, and Disability should marry non-​deaf persons was in afect a form of eugenics. If through such matings deafness could be eliminated, as he hoped, such a practice was decidedly eugenic in nature. As the next few decades evolved, however, few eugenicists would support the notion that dominant genes could overpower “degenerate” recessive genes. In fact, eugenicists were generally in agreement that negative eugenic traits served as impurities within the gene pool that might easily overwhelm, contaminate, and defeat positive traits. Tis being the case, however, persons with sensory disabilities never were important targets of eugenic control.

Eugenics and the Historical Denigration of Persons with Disabilities It is particularly important to stress that eugenics fts rather seamlessly into the historical maltreatment of persons with disabilities. Both prior to and since the eugenics movement, in the United States as well as other nations, persons with disabilities, and especially individuals with mental, cognitive, or intellectual disabilities, have been subject to all manner of derogation. As will be taken up below in the discussion of the “minority group” model of disabilities, the degree to which such persons have served as targets of pejorative speech, dismissiveness, social control, or outright violence is highly disproportionate to the harm or threats they actually pose to others. In other words, our aversive response to those with disabilities seems to be largely emotional and perhaps even based on a number of interrelated subconscious fears that we aren’t fully aware of. In order to truly understand eugenics, then, it’s helpful to provide a brief overview of this history of denigration. Tere certainly isn’t space here to spell out the many varied ways that individuals with disabilities have been abused and negated in the past, but some mention of it is benefcial in properly contextualizing the eugenics movement. As alluded to above, whether classifed as morons, idiots, mentally defcient, mentally retarded, special, or intellectually or cognitively disabled, persons falling into these or similar classifcations have been the primary subjects of ethical discussions surrounding eugenics, bioethics, and related areas, both past and present. While those controversial topics that might be included under the umbrella of “new” eugenics will be taken up in some depth in the following chapters, it’s important to note that these examples only include a portion of those that might fall under the general theme of the

Eugenics and Persons with Disabilities  45 right to live for such individuals. A brief review of some of these ancillary issues is instructive as many of the ethical concerns that arise in prenatal and embryo testing are also important in these situations. Infanticide of children with severe disabilities remains an ethical concern. While on occasion newborns with severe disabilities have been lef to die following birth, the issue was brought up publicly in 1973 by Duf and Campbell, two physicians, who noted that it happened on a fairly regular basis. Tese authors noted that some of the parents agreeing to such a decision “feared that they and their other children would become socially enslaved, economically deprived, and permanently stigmatized” (p. 892). Te authors believed that the scope of the issue needed to be made public, given the importance of the ethical issues involved. Te authors were also concerned that physicians might have undue infuence over parents, who might be operating from a state of shock. Even for children who survive infancy, they still may be at risk for what Wolf Wolfensberger (1992) referred to as “death-​making.” Tere were numerous examples from the eugenic era of parents who killed their children, arguing that they were too great a burden for the family, or in too much pain, and therefore their actions were altruistic. Tese parents generally received gentler treatment from the courts than if the child had been non-​disabled, and ofen such cases never even resulted in the fling of criminal charges. A more recent case that received much publicity was the Tracy Latimore case in Canada. Tracy had multiple disabilities, including cerebral palsy and an intellectual disability, and in 1993 her father killed her in what he said was a mercy killing. Many came to his defense, arguing that his actions were hard but that he was doing right by his daughter, who no longer had to “sufer.” On the other side, disability activists countered that Tracy’s life shouldn’t be discounted by giving her father a lenient sentence (Jenish, 1994). Ofen such cases involve passive rather than active “euthanasia,” with persons who have serious disabilities not provided with the medical treatment they need to survive. Te case of Phillip Becker is an example of this. Phillip, who had Down syndrome, was 7 when a heart condition, frequent in persons with Down syndrome, was diagnosed. Te condition worsened to the point where, at 12, he required a lifesaving medical procedure, which his parents didn’t agree to. Te case made it to court in the early 1980s, and the surgery was mandated. Phillip’s parents agreed that their decision would have been diferent had this been one of their non-​disabled children (Herr, 1984). Similarly, many have argued that persons with Down syndrome or similar

46  Eugenics, Genetics, and Disability conditions shouldn’t be included on the waiting list for heart transplants. While ulterior motives are ofen noted (e.g., difculty following through with postoperative instructions), it’s quite obvious that their presumptive devalued status is really the foremost concern in such decisions. Te relationship of persons with intellectual disabilities to the rest of humanity has been a matter for conjecture for centuries. Some philosophers felt that such persons flled a taxonomic space between Homo sapiens and the non-​human species (e.g., a missing link), while others believed that while they were technically human they were without a soul or had no inherent value, either because of their lack of reason or immoral impulses that they could not control (Carlson, 2010; Metzler, 2016). Even in recent decades Peter Singer and other philosophers and animal rights ethicists have discussed the intellectual proximity of persons with cognitive disabilities to “higher-​functioning” animals. Singer’s concept of speciesism holds that we need to provide better treatment for such animals (e.g., great apes) than we currently do because they are so similar to persons with intellectual disabilities (O’Brien, 2003a; Ryan, 2014; Singer, 1975; Taylor, 2017). Others have contended that persons with disabilities were sent from God for a specifc purpose, usually regarding transgressions of their parents or to convey another message about the family specifcally or the need of the community to treat such “unfortunates” with compassion (Goodey, 1996; Schultz, 1966). Both historically and more recently, persons with various types of disability conditions have frequently been exploited as objects of curiosity and targets of ridicule. In her 2016 book Fools and Idiots? Metzler describes the exploitation of persons with intellectual disabilities as court jesters or fools. Several authors have noted the long history of opening up mental asylums to weekend visitors. Te most notorious of these sites was Bethlem Hospital in London, from which we derived the term “bedlam,” where visitors paid an admission fee to ogle and tease those who were locked up. Te practice spread to early institutions in the United States. Freak shows also frequently used persons with various types of disabilities to draw customers (Bogdan, 1988; Fiedler, 1978; Markotić, 2016). Many of these persons were given a false exotic background in order to present them as “missing links” that had supposedly been found in the dark jungles of the Amazon, Africa, or other “primitive” setting. Teir dress, hair, and makeup were prearranged to further the charade. James Trent (1998) wrote of the similar display of persons with disabilities at the 1904 World’s Fair in St. Louis.

Eugenics and Persons with Disabilities  47 As in the eugenic era, disabilities of various types have been invoked to justify presumptions of low or diminished status for immigrant groups, African Americans, females, and various other “minority” populations, as a disability label has at times been superimposed on persons already having one or more other stigma labels. Tis further rationalizes the “otherness” of the group and justifes maltreatment against them (Baynton, 2001; Burch & Sutherland, 2006; Erevelles & Minear, 2017; Frederick & Shifrer, 2019; Gould, 1981a; Jackson, 2000; Nies, 2002). Baynton (2001) contended that “[d]‌isability arguments were prominent in justifcations of slavery in the early to mid-​ nineteenth century and of other forms of unequal relations between white and black Americans afer slavery’s demise” (p. 37; also see Nielsen, 2012). Metaphors related to disability “ofen provide cogent allusions to the historical and contemporary intersectionality and mutually constitutive nature of blackness and disability in the United States” (Schalk, 2017, p. 148). Dolmage (2014) adds that “disability is ofen used rhetorically as a fexible form of stigma to be freely applied to any unknown, threatening or devalued group” (p. 4). As most readers are likely aware, many mental illness labels have either been created explicitly for the purpose of supporting misogynic policies or practices or have come to take on such a purpose as they have evolved. Controversies related to diagnostic categories frequently center around the contention that such diagnoses are fashioned in a way that they support existing stigmas and gender-​based prejudices (Kirk & Kutchins, 1992). According to Jonathon Metzl (2009), African American male protesters in urban areas such as Detroit during the Civil Rights era were ofen given a diagnosis of schizophrenia in an efort to institutionalize them. Movies and television portrayals of persons with disabilities have ofen supported entrenched negative stereotypes of various conditions, or presented non-​disabled persons as the “saviors” of persons with disabilities (Chivers & Markotić, 2010; Garland-​Tomson, 2009; Mitchell & Snyder, 2001). Similarly, media accounts that include persons with disabilities ofen focus on the disability as the most important attribute of the individual or to highlight aspects of the person’s story that support sympathy or pity (Haller, 2010; Shapiro, 1993). Among the more acceptable representational images of individuals with disabilities are “supercrip” stories that emphasize “overcoming” a disability, or successful eforts at cure (Pelka, 1994; Shakespeare, 1994), which ofen support the belief that those who couldn’t “overcome” their condition simply didn’t try hard enough. Much has been

48  Eugenics, Genetics, and Disability written about the denigrating portrayals of persons with mental illness, with them frequently being presented as violent, ofen homicidal. Tese issues are important since a large portion of the general public takes their cues regarding disability from mass and social media sources. Even when well-​meaning persons believe they are acting in the best interests of persons with disabilities, these eforts ofen include a degree of paternalism that we understand is problematic when directed at other “minority” groups. For example, many in the disability community have frequently criticized charity fundraising eforts such as the past Jerry Lewis Labor Day Telethon because they too ofen rely on a pity perspective and are viewed as exploitative, especially in their use of children to “sell” the presumably traumatic impact of living with a disability, and the need for non-​ disabled persons to save or help them (Bennetts, 1993; Russell, 2002; Smit, 2003). As Marta Russell (2002) noted, charities that purportedly serve persons with disabilities very ofen provide much of the money they raise to non-​disabled persons, whether these are fundraisers, scientists, researchers, nonproft administrators and employees, etc. As will be noted later, a key element of the “minority group” model of disability is to transfer some of the funds that normally go to researchers, scientists, doctors, etc. to persons with disabilities to assist them directly. One additional area where persons with disabilities are frequently maltreated and where their capabilities may be discounted, and one that specifcally involves the social work community, is the right to parent. Parental disability is ofen a primary rationale for custody removal, and while certainly there are cases, especially for those with severe mental illness, where children may be harmed by parental actions, ofen parents with disabilities can function efectively with the right supports. Among others, Frederick (2014) wrote that disabled “mothers are more likely to have their parental rights terminated, and when children are removed these families receive fewer supports for reunifcation” (p. 35). Unfortunately, as the following chapter denotes, the social work community has supported, ofen unwittingly, a derogatory view of disability, and as a profession we are latecomers in embracing a human rights perspective and acting in concert with individuals with disabilities in their eforts to fght for their rights.

Eugenics and Persons with Disabilities  49

Notes 1. An earlier version of much of the information in this chapter was originally presented in O’Brien & Bundy (2009). Tanks to NASW Press for permission to reprint this material. 2. During the eugenic era, many researchers believed that this genetic component would be found in the blood, and terms such as “bad blood,” “bloodline,” or “it’s in his blood” were ofen used in describing heredity (Pernick, 1997). Tere also was, among both American and German eugenicists, a general belief that “race pollution” came about from the intermingling of “pure” and “alien” blood (Biale, 2007). Te term most frequently used in eugenic writings to describe genes was “germplasm” (Nelkin & Lindee, 2004, p. 20).

4 Te Eugenic Movement and the Social Work Profession [T]‌he helping professions . . . used immigration restriction, sterilization of mental defectives, and the fear of sexual predators to enhance their professional positions, give their institutions the appearance of viability and usefulness, and make their practitioners indispensable as auxiliaries in courts of law, penal institutions and school systems. McWhorter (2009, p. 223)

It’s somewhat difcult to analyze the extent of overlap between eugenics in the United States and social work since the profession was in its infancy, and many of those we would consider to be leaders in the social work feld did not in fact have a social work degree, particularly since there were few higher education programs in the nation during the height of the eugenic alarm period, and those who engaged in what we might refer to as social work went by a plethora of diferent professional titles. Many considered themselves social reformers or advocates for social welfare or reform; the term “welfare” at the time was quite broad (as is still the case, really) and did not have the strong governmental public assistance overtones that it would eventually take on. One could even question, as Brieland (1990) did, whether Jane Addams was really a “social worker.” However, a brief introduction to the early evolution of the profession is in order. Social work as a profession largely grew out of volunteerism and church support for those in need. As the 19th century was coming to a close, a seminal aspect of the emergent Progressivist movement in the United States was the importance of a research focus in charitable giving, and thus the stage was set for the era of “scientifc charity” (Katz, 1996). Many argued that charity was misguided and haphazard, and needed to be driven by professionally accepted forms of research and practice. Tis would not only make Eugenics, Genetics, and Disability in Historical and Contemporary Perspective. Gerald O’Brien, Oxford University Press. © Oxford University Press 2023. DOI: 10.1093/​oso/​9780197611234.003.0005

Eugenic Movement and Social Work Profession  51 charitable giving more efcient, but would also allow for a better means of delineating the “worthy” from the “unworthy” poor. Added to this were growing concerns over child abuse and other social problems, especially in urban areas that were rapidly becoming congested. As Popple (2018) noted, the feld was especially attractive to females, not only because of the limited professional areas they could go into (e.g., teaching and nursing), but also because over the past few decades labor-​saving machinery had been developed that made cooking and housework much more efcient, giving women more available time. Shortly before the turn of the century Mary Richmond, the general secretary of the Charity Organization of Baltimore, wrote the book Friendly Visiting Among the Poor (1899) in an efort to bring a degree of uniformity to “friendly visitors” who assessed the needs of families in poverty. Over the next few decades, the feld would gradually emerge, though questions remained about a number of issues pertaining to the goals of the profession, along with what its professional boundaries should be. Tese questions came to a head when Abraham Flexner, an education specialist, was asked to respond to the question of whether social work constituted a “profession,” similar to medicine or the law. At the 1915 Conference of Charities and Correction, the most important yearly gathering of social workers, Flexner gave his report. He contended that while some elements of social work were professional in nature, the feld fell short in a number of ways. He said that social workers were strong on assessing issues related to families in need, but weak on professional practice skills (Popple, 2018). He additionally noted that the boundaries of the feld were unclear, even to many of its practitioners (Flexner, 1915; Popple, 2018). To a large degree this pertained to questions about social reform eforts and other types of what now would be referred to as macro practice, as well as to areas such as public health, probation and parole, and other concerns where social work involvement overlapped with other “professional” areas. While a small number of social work education programs had been instituted by the time of Flexner’s report, they turned much of their attention to these matters. Progressive-​era social reformers, including those we would like to embrace as leaders of the social work profession, educational degree or not, largely supported uplif of the population primarily through euthenics, or positive environmental change. Policy areas they focused on included child labor restrictions and compulsory education; initiatives related to public health, clean water, and garbage removal; well-​baby clinics; industrial reforms such

52  Eugenics, Genetics, and Disability as the 40-​hour work week and industrial safety standards; and tenement reform. Settlement house workers such as Jane Addams were particularly intent on helping to assimilate new immigrants into the nation,1 and to assist in minimizing the social problems that they were viewed as both contributing to and being victimized by. At the heart of Progressivism was the belief that social science and conformity with “American” values could be brought together to develop policies and practices that would improve living conditions, primarily in large urban areas, and assist those who worked hard but still struggled to make ends meet. Te prevention of social ills, then, was a hallmark of Progressivism, and many argued that eugenic policies ft very nicely under the banner of the movement since it was a means of prevention. “Progressives contrasted the high cost of maintaining hospitals, detention homes, jails, and other remedial and custodial institutions with the lesser cost of preventative measures” such as eugenic policies (Smuts, 2006, p. 126). Sterilization in particular was viewed by many of its advocates as being akin to other public health measures. Just as Progressivist reformers attempted to keep people safe from environmental contagion, prevention of genetic diseases was perceived to be another form of public health, an attempt to control what might be referred to as “reproductive contagion.” Citing the Buck v. Bell decision legalizing involuntary sterilization, Goodwin and Chemerinsky (2016) said that if “young men and women were rendered incapable of procreating, their heredity would not infect future ofspring or others by ‘transmission of insanity or imbecility’ ” (p. 958). Contagion metaphors played an extremely important role within eugenic writing, both in the United States and Nazi Germany (Gallagher, 1990; Koenigsberg, 1975; Musolf, 2010; O’Brien, 1999, 2013a, 2018; Pernick, 1996, 2002).2 To eugenicists on both sides of the Atlantic, “[q]‌uarantining the infectious achieved the same kind of public health goal as eugenically segregating the feebleminded from ‘normal’ people or separating the white race from other races” (Fatović-​Ferenčić, 2008, p. 716). Euthenics and eugenics, then, were not generally viewed as contrary social goals, and many reformers believed that in order to be most efective, environmental, occupational, and educational reforms needed the assistance of eugenic policies (Kline, 2001). As noted earlier, this primarily related to those who were considered feeble-​minded and others who presumably could not be “uplifed” through euthenic measures (Leonard, 2005a), nor be counted on to voluntarily control their sexual urges. In fact, working on

Eugenic Movement and Social Work Profession  53 environmental reform without eugenics was widely viewed as potentially inefective, indeed as a Sisyphean undertaking. It made little sense attempting to enhance individual opportunities and the environment if persons were being born into the world who could not take advantage of these benefts, and this was especially true for those who might inadvertently sabotage such measures. Reform advocates, then, ofen contended that allowing “unft” persons to freely breed, as well as allowing unchecked immigration into the country, made environmental reform a never-​ending task where one would unlikely make much if any headway. Seth Humphrey wrote in 1913 that “the social worker should know that, however he may succeed in suppressing the bad and developing the good traits in an individual, his eforts no more afect the traits which that individual is carrying in store for his ofspring than they afect his fngernails, or the color of his eyes” (p. 457). Immigration restrictionist and eugenicist Henry Fairchild (1929) added that “the program of eugenics conficts in no way with the activities of philanthropists and social workers who aim to make life as easy as possible for those already in the world. On the contrary, the spirit of eugenics is wholly in sympathy with those eforts” (p. 21). While “better babies contests,” which began shortly afer the turn of the century, are most closely associated with the eugenics movement, “settlement houses and related reform organizations held numerous better baby contests, spreading the gospel of safe milk, scientifc upbringing, and moral living to the urban immigrant working class” (Bender, 2008. p. 5). Many contended that if the goal of social reformers and reform institutions was “to perpetuate the hereditarily unft whom nature would destroy” and thus “facilitate their reproduction,” they were doing a disservice to the nation (Humphrey, 1913, p. 459). Many early social workers were no doubt sensitive to the fact that their activities could be viewed as dysgenic, especially if these eforts served to keep “unft” populations alive and inadvertently support their breeding. Speaking of social workers and public health professionals, one eugenicist questioned whether there was “something in their methods which indirectly defeats the ends at which they aim; something that produces deterioration and [racial] extinction in place of health, survival, progress” (Jennings, 1927, p. 233). Counter to this belief that the role of the settlement houses was to distribute charity, Bender (2008) wrote that settlements “rejected primitive charity,” but embraced science and “brought to bear the insights of biology

54  Eugenics, Genetics, and Disability to the challenges of social problems” (p. 9). Te settlements, he said, viewed themselves as a bulwark to protect the rest of the city from the degeneration and disease that poor and immigrant neighborhoods threatened. Te settlements grew as germ theory and the prevention of contagion became important concerns (O’Brien, 2019), and the settlements’ focus on Americanization entailed in part a focus on cleanliness and purity, both of one’s body and home. One worker referred to the settlement as a “disinfecting agency to the community” (cited in Lasch-​Quinn, 1993, p. 27), and workers “regularly pointed to the bodies of exercising children as evidence of their success in altering heredity through change of environment” (Bender, 2008, p. 18). Te settlements, and early social work in general, was above all about assimilation. While we generally think of this in terms of the Americanization of immigrants, as Jennifer Haley (2020) noted, this not only meant assimilation into a Christian White middle-​class capitalist society but also included the “discourse of eugenics as a mechanism of control used by leaders in the Charity and Settlement House movements” (p. 10). Similar to our time, the stereotype of uncontrollable propagation among devalued females was a central theme of eugenic writing, and a belief that was central to fears of “race suicide.” A prevalent concern that drove the eugenic movement was species degeneration, the belief that humanity was actually deteriorating, physically as well as mentally, due in part to the diferential birth rates among various groups (Gelb, 1995). Along with other goals, reform movements were viewed as one way of slowing or even reversing this decline. Margaret Gibson (2015) wrote that social work in the United States “emerged as a profession in the same time period as degeneration and eugenic theories.” She contended that “much of the impetus for the development of social work’s professional role had roots in the same discourses of degeneracy and social reform” (p. 320). LaPan and Platt (2005) argue that the general perception of the interrelationship between the social work profession and the eugenics movement has been that some social workers or reformers warily agreed with certain eugenic goals, but that most broke away from eugenics by the 1920s. Counter to this belief, they contend that [S]‌ocial workers were actively involved in the eugenics movement in the frst part of the twentieth century; . . . eugenics played an important ideological and practical role in the formative years of the profession; . . . [and] biologically informed views about social problems retained a respectable

Eugenic Movement and Social Work Profession  55 role within social work beyond the 1920s; and that the class, racial, and gender biases permeating eugenics lef an enduring legacy in the profession. (p. 141)

Eugenics and Social Welfare Publications and Conferences During the height of the eugenics movement, important social welfare publications highlighted eugenic proposals and papers written by their supporters. Te National Conference on Charities and Corrections, which would eventually become the National Conference of Social Work, was the most important annual gathering of social welfare advocates and organizational administrators during this time. Especially during the 1910s, among papers on child welfare, poverty, occupational and sanitation reforms, and alcohol abuse are a plethora of selections by leaders of the eugenics movement (Kennedy, 2008). In the 1915 collection, where Abraham Flexner’s famous presentation on whether social work could be considered a profession appeared, eugenic leaders including Charles Davenport, Henry Goddard, Walter Fernald, and Martin Barr contributed articles on “State Care of the Insane, Feeble-​minded and Epileptic.” Typical of these selections, in his article Goddard (1915) noted that the moron “is a menace to society and civilization; [and] he is responsible to a large degree for many, if not all, of our social problems” (p. 307). Te 1911 Presidential Address by Homer Folks, the secretary of the State Charities Aid Association, highlights the importance of involuntary institutionalization for feeble-​minded persons as a eugenic method, and he noted that this suggestion had ofen been included in the opening addresses of the conference (Folks, 1911). As was the case in other years during the heart of the eugenic age, numerous presentations called for either forced institutionalization or sterilization (Taf, 1918). In fact, such articles predated the turn of the century by several decades. In 1877 the Proceedings of the Conference of Charities included “Hereditary Pauperism,” an abridged version of Richard Dugdale’s famous research on the “Juke” family (Dugdale, 1877, 1910). Tis study would set the stage for later eugenic family studies, including the best-​ known, Henry Goddard’s Kallikak study (1912a). Some reformers noted that the better babies or baby health contests that became important facets of eugenic education in communities could be one way that potentially disabled children could be identifed for further study

56  Eugenics, Genetics, and Disability of their families by social welfare authorities. Such investigations, it is safe to assume, might be an early step on the path to eugenic interventions such as forced institutionalization or sterilization. Robbins Gilman of the University Settlement Society wrote in 1914 that Afer a careful record has been made of the names and addresses of the imperfect babies entered in a contest, and their homes have been visited, and further and more careful examinations have been made, they should then become the special care of the municipality or private baby welfare organization. (p. 273)

Te most important monthly social welfare publication of the time was Te Survey, which would become Survey Graphic in 1933. Tis also frequently published articles touting the eugenic movement. Te March 2, 1912, issue is particularly important, as it included a series of eugenic writings. Especially notable was an early article on the Kallikak family written by Elizabeth Kite. Tough she engaged in the brunt of the legwork for the study, unsurprisingly it would be her male supervisor Henry Goddard, who wrote the book, who would get the credit for the study. Goddard himself wrote an article that included an early genogram, and, discussing morons, said that we might as “well try to cure a fox of eating chickens as to attempt to reform such as these by prison sentences, education or social uplif” (1912b, p. 1854). Only forcibly keeping such persons from reproducing would help. Tis section of Te Survey also included a series entitled “Fragments of Humanity,” which were brief descriptions of the horrible and harmful lives that specifc feeble-​minded persons presumably lived (Irwin, 1912). Tis title supported the popular metaphor that persons with intellectual disabilities were not fully human, and therefore were not deserving of full human rights. Troughout the 1910s and 1920s particularly, Te Survey would continue to publish articles extolling the potential value of eugenic policies, especially related to sterilization. In 1915 Alexander Johnson, who worked alongside Henry Goddard, wrote, speaking of those diagnosed as feeble-​minded, that “nothing but drastic action for the prevention of propagation and for the care and control of the present generation can avert grave disaster from the nation” (p. 136), and that feeble-​minded women were particularly dangerous, constituting “a graver danger to the prosperity of the state than a foreign war or native pestilence” (p. 137). While many of these articles called

Eugenic Movement and Social Work Profession  57 for sterilization, some recommended forced commitment. A 1919 article contended that a “law for the commitment of feebleminded youth should be passed at once, and one applying to adult feebleminded males—​similar to the one already in force for feebleminded women—​as soon as the increase in accommodations warrant” (“Indiana’s Mental Defectives,” p. 675).

Social Work, Social Reform, and Eugenic Control Tere was a great deal of cross-​fertilization between the burgeoning social work profession and the eugenics movement. In a 2008 article Angie Kennedy contended that Jane Addams supported the institutionalization of feeble-​minded women for eugenic purposes (p. 29). Addams had a particular interest in fghting venereal disease and prostitution, and like many of her generation she believed that these evils were signifcantly contributing to “race deterioration”3 (Addams, 1912, p. 343). In addition to removing children from “poor” homes, welfare boards would ofen institutionalize the parents in order to ensure that there were no additional children born into the family (Ladd-​Taylor, 2017). Addams also supported a policy that would require health certifcates for marriage, which, as noted, many eugenicists called for (Addams, 1912). Kennedy adds that in Social Diagnosis, Mary Richmond discussed feeble-​mindedness at length and “advocated deportation” of unft immigrants (p. 29), and according to Mimi Abramovitz (1988), friendly visiting, primarily advanced by Richmond, “perpetuated the individualistic interpretation of poverty supported by social Darwinism and eugenics” (p. 152). While not a social worker, Mary Harriman, the daughter of a wealthy railroad magnate, was heavily involved in the settlement house movement and other social reform causes, and founded the Junior League, which connected well-​to-​do young women with the settlements. When her father died, his wife, also named Mary, inherited his money, becoming the wealthiest woman in the country (Downey, 2009). Te younger Harriman become interested in the Davenport’s work, and introduced her mother to Davenport. Te two bonded, and part of the Harriman fortune was employed to help create the Eugenic Record Ofce (Okrent, 2019; Spiro, 2009, p. 127). Again, this points to the fact that the “euthenics” work of the settlement houses and the eugenic goals of the Record Ofce were in no way incompatible with each other. Both were considered to be complementary modes of improving the life of the

58  Eugenics, Genetics, and Disability nation. Tey were, in efect, diferential ways of dealing with the “worthy” and the “unworthy” poor. Along with involuntary sterilization or institutional confnement, many social workers, at least as the eugenics era progressed, supported establishing birth control clinics or distributing contraceptive information in poor areas of the cities. In his article entitled “Eugenical Social Work,” which appeared in a 1930 issue of the periodical Eugenics, Frank Lorimar said that not only should “eugenical social workers” provide such information to “under-​ equipped potential mothers and fathers,” but that in “extreme cases he might even make the extension of fnancial aid conditional upon the cooperation of the family itself in this matter” (p. 96). As alluded to in Chapter 2, most eugenicists were wary of including birth control as a potential eugenic measure, especially early in the movement’s history. Tey believed that (1) those characterized as feeble-​minded and sexually immoral were incapable or unwilling to utilize such options voluntarily, and (2) widespread dissemination of birth control information would be used primarily by couples that eugenicists believed should have more, not fewer, children, and therefore it would only serve to increase “race suicide” (O’Brien, 2013b). As birth control became more accepted among the “ft” segments of the population, however, an increasing number of eugenicists and social workers agreed that clinics should be established in poor neighborhoods as a means of controlling reproduction among the poor. One argued that “[e]‌xactly because birth control is here for the wise and provident, we need it also for the isolated and ignorant” (Blount, 1918, p. 7), and Paul Popenoe, a leading fgure in the California eugenic movement, added that the “spread of birth control to the less capable part of the population will be an important advance for eugenics in cutting down the racial contribution of inferior stocks” (Popenoe, 1917, p. 6). Popenoe would become an important advocate for eugenic policy. It was in large part due to his infuence that during the latter part of the eugenic era, California would come to lead the nation in eugenic sterilizations (Stern, 2005). Among the more important regular publications on eugenics was the monthly Eugenical News, which carried brief updates on scientifc discoveries, eugenic events, books, and other topics of interest. In 1921 the publication supported an efort to register social workers, and hoped that [P]‌erhaps a little later some legal provisions for the registration and certifcation of eugenic feld workers will become desirable. Certainly . . . [these]

Eugenic Movement and Social Work Profession  59 workers constitute a specially trained group of persons who, in order to do their work, must enjoy certain privileges in the homes of families which have one or more members in custodial institutions of one type or another. (“Registering Social Workers,” 1921, pp. 63–​64)

“Certain privileges” here obviously meant that such investigators would be able to come into the homes and conduct their work without necessarily gaining consent. As it became clear over the course of time that the information gathered by feld workers was being used as evidence to support the infringement of civil liberties, it was safe to assume that eventually families would be less willing to allow them access to their homes or share information with them. During the formative years of the profession, then, eugenics was a frequent topic of conversation at conferences, in reports, and in seminal publications. It was by no means a radical or even very controversial topic, at least until it came to be closely connected to Nordicism and race-​based eugenic proposals. As LaPan and Platt (2005) noted, “Social workers’ adoption of eugenics measures can in part be explained by the emerging profession’s search for professional respectability and a distinct body of knowledge” (p. 149), and Paul Lombardo (2008) noted that it was not unusual to fnd eugenic instruction in early social work college curricula. According to Angie Kennedy (2008), eugenic “ideas and eugenic solutions to perceived social problems, with their veneer of scientifc validity and respectability, were congruent with this newly emerging emphasis within the social work profession, and, as such, were warmly received by many social workers” (p. 28). Social work was one of a number of new Progressive-​era professional occupations “in the process of professional self-​legitimation,” Rafer (1997) noted, and its members attempted to carve out its own niche within the growing eugenics infrastructure (p. 87). To quote Snyder and Mitchell (2006), “Newly professional scientifc disciplines, along with social work and its various therapeutic spin-​ofs, all focked to participate in the identifcation, care, and training of those labeled ‘feeble-​minded’ ” (p. 73). One could not be so involved without embracing eugenic methods. Since a selective breeding program can be opposed based on the belief that it is an afront to God, many eugenicists utilized religious metaphors and symbols or attempted to gain support for their goals from religious leaders (O’Brien & Molinari, 2011; Rosen, 2004). One eugenicist contended that social workers made an important contribution to carrying out the goals of the

60  Eugenics, Genetics, and Disability movement since “social work is a spiritual work, and the worker should have the same defnite consecration which we expect of people who engage in religious or missionary work” (Hart, 1914, p. 403). As many early social workers and reformers viewed their work as an outgrowth of their Christian beliefs, it was important that philosophical connections be made between Christianity and eugenics. While many believed that control of human breeding was to be in God’s purview, eugenicists contended that social workers and other philanthropists, if through their work they supported the survival of “weaker” humans, were subverting the laws of God (or nature), and therefore it was appropriate for such professionals to have a hand in countering this through measures such as sterilization (O’Brien & Molinari, 2011). If God is perfect, and humans are to be more like God, evolving in a way that supported greater perfection among humans could be viewed as a spiritual endeavor. While generally either friendly or neutral in regard to sterilization and/​ or institutionalization, one area of eugenic control that virtually all early social reformers were opposed to was euthanasia. Jane Addams, for example, expressed disapproval of a 1903 proposal in Michigan that would have “provided for the electrocution of infants with mental infrmities” (Elshtain, 2002, p. 161). A number of important reformers weighed in on the “Bollinger baby” case, the 1915 infanticide decision in Chicago discussed previously. Alice Hamilton, a well-​respected public health physician who worked on various Hull House initiatives, said that humans did not have the requisite wisdom to decide which children should be allowed to die (Hamilton, 1915). Addams also spoke out against the decision, contending that many notable persons had disabilities (Addams, 1915). As introduced in the previous chapter, this argument points to the divergence many had between how physical disabilities should be viewed as opposed to mental ones, and especially feeble-​mindedness. Eugenic policies were most apropos in relation to moronity, secondarily to mental illness, and not necessarily in relation to physical disabilities, and especially for those physical disabilities that were not proven to be hereditary. One reason for this, as Addams alludes to, is that many in the latter group had positive attributes that counteracted their disability, while those with feeble-​mindedness did not. As previously noted, few eugenicists in the country supported proposals related to either euthanasia or infanticide. In large part this was because the main objective of eugenics, to end a genetic line, would be reached just as well and with much less controversy through sterilization or forced custodial

Eugenic Movement and Social Work Profession  61 care. Many eugenicists felt that support for a highly controversial practice such as euthanasia would harm public support of the movement. Some reformers, especially Catholics such as Dorothy Day, also specifcally opposed birth control as a form of eugenics due to their own religious beliefs (Murray, 1999).

Social Workers and Eugenic Field Workers Te eugenic family studies, which involved investigating families or persons with “degenerate” conditions for generations back to fnd out the extent of deleterious traits in these family lines, are particularly important for early social work. Tese investigations utilized “feld workers” who would visit the communities where such families had lived, and conduct interviews to develop what amounted to a biopsychosocial profle of even long-​dead family members. As one might assume, conditions such as mental illness, alcoholism, prostitution, criminality, and, most especially, moronity, were found to be epidemic in these families. Charles Davenport (1921) wrote that Alexander Graham Bell was among the frst to use feld workers, in his research of deafness on Martha’s Vineyard. Field workers ofen used an early version of a genogram to map out the presumptive heritable nature of degeneracy throughout the generations of these families. In discussing such feld work, Davenport (1915) said that “the parents or other relatives of the patient are pleased to think that the hospital or school takes such an interest in the patient as to send a visitor to the home” (p. 314). Little did these relatives know that the information gathered would be a powerful tool in the efort to stop such bloodlines. Deception was an integral aspect of these studies. Elizabeth Kite, the primary feld worker for the Kallikak study, wrote (1913) that “unless I fnd a person of exceptional intelligence, sympathy and interest, I avoid letting her know just what I am afer” (p. 147). Both eugenics and social work provided professional opportunities for women who wanted to move beyond the volunteer charity work of the friendly visitors of earlier generations (Carlson, 2010). Eugenic feld workers such as Elizabeth Kite and Mary Kostir were typical examples. Te former conducted the feld work for the Kallikak study (Kite, 1912), and the latter wrote the eugenic study “Te Family of Sam Sixty” (1916). Even though they normally worked under men, they did have a degree of professional autonomy and, one would assume, perceived themselves as social scientists

62  Eugenics, Genetics, and Disability rather than charity workers. Eugenic-​ minded social reformers such as Katherine Bement Davis and Florence Sanville worked in professional positions and conducted research in women’s prisons that lent credence to the belief that poor “sexually immoral” and “criminalistic” women were ofen feeble-​minded and tended to procreate freely. While there were obviously few female physicians at the time, doctors such as Lydia DeVilbiss, Florence Sherbon, and Helen MacMurchy, a Canadian, would study well-​baby and childrearing practices, infusing both positive and negative eugenic proposals into their writings (Lovett, 2007; MacMurchy, 1916). Tese are only a few examples of many females who found professional careers through eugenics. According to English (2004), males were much more apt to cede a limited degree of professional authority to women in areas that were perceived to be within the latter’s particular sphere of experience or interest. Reproduction, child-​raising, the treatment of “wayward” juvenile girls and feeble-​minded women, and related social issues were generally viewed as areas that could be, for the most part, given over to women who wanted to take on a professional role (Knupfer, 2001). However, as one might expect, they still normally acted under the authority and guidance of male superiors, and understood that they had to support the existing eugenic narrative in order to remain acceptable to those to whom they were beholden for their livelihoods. In her 1997 article discussing eugenic feld workers, Amy Bix provides a thorough discussion of the relationship between social work and eugenic feld research, two new avenues in which women could engage in professional and research activities during the Progressive era. As each area tried to defne itself and carve out its own professional territory, there was ofen confusion, and not just in the minds of the lay public, regarding the relationship between them as well as the purview of their respective felds. While social workers such as the settlement house workers tended to concern themselves with urban issues, the feld workers usually ventured to rural environs in their eforts to track the genealogies of “unft” families. Both felds of practice were heavily dominated by females, and pay was generally comparable. While female feld workers viewed themselves as researchers in their own right, Charles Davenport, who was responsible for training most of them and placing them in jobs, viewed their work as supplemental to that of the males they worked under. According to Bix, Davenport also viewed eugenic feld work as temporary, and believed that before long these workers would become full-​time mothers, contributing to national purity in a more personal way.

Eugenic Movement and Social Work Profession  63 Many of the feld workers went on to various areas of social reform, usually working for agencies or boards focused specifcally on issues pertaining to women and/​​or children. One of the best-known of these was Jessie Taf, who would receive a PhD, hold several high-​profle social work jobs, and be a respected social work professor in the feld for decades. According to Bix, Taf wrote that eugenic feld work was “a prehistoric form of what we now call the psychiatric social worker, although she [the feld worker] seems to us to have had very little understanding either of psychiatry or social work” (p. 654).

Eugenics and the Professionalization of Motherhood As the frst decades of the 20th century wore on, and there was increased interest among many women in developing a professional identity outside the home, males in large part had hopes that they would be appeased by the development of a scientifc approach to motherhood and homemaking. If research and the scientifc method were brought to bear on the traditional roles of women, and “best practices” were broadly disseminated and celebrated, many males felt that women would value these roles more, feel greater appreciation for their work as wives and mothers, and fnd enjoyment in attempting to fnd the most efcient and productive mode of engaging in such work. Many agreed with Whetham and Whetham (1909) that “[t]‌he failure to pay due honour and respect to the natural duties of women . . . has been one reason why some women have desired to assume responsibilities for which they are less ftted” (p. 211). Te professionalization of motherhood, many believed, would support traditional gender norms (women as reproducers, nurturers, and homemakers) while at the same time providing some degree of empowerment for women searching for a quasi-​professional outlet (Kline, 2001). Additionally, since “the home enjoyed such esteem in the culture, women could use it to justify their activism in the public sphere” (Matthews, 1987, p. 92). Many agreed with Teodore Roosevelt (1914), who believed women could have the best of both worlds, staying home and raising their children when young, then later becoming involved in philanthropy or public service when their children lef the home. Related to the push for the dissemination of birth control knowledge was a broader anti-​Victorian movement to shed light on sexuality and prenatal/​ perinatal/​postnatal issues. Many Progressivists argued that leaving women

64  Eugenics, Genetics, and Disability in the dark about their sexuality because of the shame that was attached to it was problematic on many levels, and was detrimental to families and children. Tis obviously connected directly to eugenics, since eugenicists touted an increased awareness of and control over reproduction, at least for those who were not targets of control policies. As alluded to previously, to a large degree this focus on sex education and the science of marriage and child-​ raising was in keeping with other important facets of Progressivism. Just as reformers were focused on reducing environmental pollutants, many were also concerned with potential pollution of the gene pool. Both played a role in the larger social purity movement. To Margaret Sanger, this autonomy meant that, with the use of birth control, women had increased control over childbearing, and thus the ability to space their children properly. Having fewer children, she felt, would keep them from feeling overwhelmed and allow them to provide enough attention to their children. Te family would also be able to have the number of children they could support, both emotionally and fnancially. Tis is where Sanger and the eugenicists parted ways, as having fewer children, especially for middle-​and upper-​class women, was in direct opposition to the goals of positive eugenics (O’Brien, 2013b). During these early years of the 20th century a wave of books were published that focused on human sexuality, prenatal and postnatal care, and a combined focus on eugenics, sanitation, and medical, educational, and environmental infuences in creating the most hospitable atmosphere for child development. Tese books bore such titles as Heredity and Prenatal Culture (Riddell, 1900), Eugenics; Te Laws of Sex Life and Heredity (Shannon, 1915), and What a Young Wife Ought to Know (Drake, 1928). As one might expect, most of these books included that a healthy dose of Christianity was also essential to the creation of a good home environment. A cottage industry of marriage counseling centers focusing on eugenic matings was also established during the latter part of the eugenics period. As noted above, California’s Paul Popenoe led the way. A leader in the California sterilization movement, Popenoe opened his American Institute of Family Relations in 1930. As Wendy Kline (2001) noted in her book Building a Better Race, Popenoe would develop a minor celebrity status when his marriage recommendations were regularly shared through magazines such as Ladies Home Journal (p. 143). Unsurprisingly, Popenoe’s marriage consulting ofces supported a male-​dominated nuclear family model. Women who refused to relegate themselves to a secondary position within the family or wanted to work outside the home were perceived as the source of family problems (Stern, 2005).

Eugenic Movement and Social Work Profession  65 As the germ theory of disease transmission was increasingly embraced during the early decades of the century, flth came to be more clearly associated with both class and race, and yet another way of denigrating outsider groups such as immigrants, the poor, African Americans, and persons with intellectual disabilities was by pointing out the deleterious condition of their environment. Eugenicists and others argued that these signs of deterioration and potential contamination were not endemic to these environments, but rather caused by their inhabitants, who knew no other way to live. As Nancy Tomes (1998) wrote, “Te ability to maintain an exacting level of cleanliness, both of the body and the home, was an essential prerequisite of gentility . . . and social standing was closely tied to a certain style of domestic life” (p. 62). In her 2004 book Eugenic Design, Christina Cogdell discusses the relationship between the American “streamlining” movement in product design that began in the 1930s and the eugenic production of children. Te degree to which various immigrant groups were seen as successfully being Americanized was based partly on cleanliness norms. It goes without saying that the “scientifc parenthood” movement of the era was really a scientifc motherhood movement. Te general assumption was that women should be provided with sexual knowledge and greater understanding of the potential consequences of their sexual choices, but along with this they carried more responsibility for the morality they practiced as well as the “quality” of the children they bore and raised. Just as they were responsible for keeping their homes sanitary and germ-​free, they were also expected to give birth to children who were free from disease and blemishes. While in the past they might have been able to contend that the demand for modesty lef them in the dark about the methods of protecting their unborn and young children, this was no longer the case. Along with other professionals, social workers played an important role in ensuring that mothers were educated on prenatal care as well as child-​raising, in addition to investigating homes to ensure a degree of cleanliness and an acceptable level of child care.

Eugenics Transformed: From “Feeble-​Minded” Persons to Welfare Mothers Even afer eugenics had come to be widely denounced following the knowledge of the Jewish Holocaust and Nazi atrocities against persons with disabilities and other devalued groups, a connection between eugenics and social work continued. According to Kevin Begos (2011), in 1957 the Human

66  Eugenics, Genetics, and Disability Betterment Association, which was based in California and was the most important eugenic organization still in operation at the time, was allowed access to the mailing list of the National Association of Social Workers (NASW). Begos contends that the list was used to send information in support of eugenic sterilization to NASW members. Tis information was especially targeted at those working with persons receiving public assistance. Social workers were viewed as potentially helpful agents who could encourage such persons to submit to sterilization. Saunders (2011) adds that eugenic content was taught in many schools of social work, and that such content was frequently targeted at controlling procreation among those who were poor, and primarily African Americans. Tis change in the focus of the “proper subjects” for eugenic control had been slowly evolving for decades, especially in many Southern states. In some ways the movement from targeting persons diagnosed as feeble-​minded to poor mothers, many of whom were African American, was natural, since it was widely assumed that a disproportionately large percentage of those in poverty as well as African Americans were apt to be feeble-​minded. Despite their lack of access to a quality education, as well as the fact that intelligence tests were overtly geared to middle-​class White subjects, eugenicists ofen highlighted the presumptive racial diferences in intelligence as a given. A 1917 article in Te Journal of Heredity held not only that African Americans scored lower on IQ tests than their White counterparts, but that higher scores among the African American group were generally indicative of higher percentages of “white blood” in subjects (“Te Mind of the Negro,” 1917). Ryan (2007) wrote that an undercurrent of eugenics was “a constituent part of an ongoing American poverty discourse,” which has continued to this day (p. 274). While many states were no longer enforcing their sterilization policies afer the Second World War, a number of Southern states “increasingly applied eugenic sterilization laws to further their anti-​miscegenation eforts and to prevent welfare recipients from having children into the 1970s” (Kennedy, 2008, p. 26). Romano (1998) adds that “[i]‌n the forty years afer World War II, white women who married black men were repeatedly labeled as ‘unft’ mothers for their white children and were sometimes punished by the courts by having custody of these children revoked” (p. 230). Te combination of being in a racially mixed marriage and receiving public support especially placed women in a vulnerable position vis-​à-​vis their ability to reproduce. In Great Britain, too, eugenic supporters suggested that authorities

Eugenic Movement and Social Work Profession  67 should “place mentally defcient women in institutions or under guardianship if they were ‘in receipt of poor relief at the time of giving birth to an illegitimate child or when pregnant . . . [with] such a child’ ” (cited in Jackson, 2000, p. 147). A 1963 article in Jet magazine is characteristic of exposés that shed light on the forced or coerced sterilization of women who received welfare provisions (Britton, 1963), and civil rights activist Fannie Lou Hamer famously talked about her “Mississippi appendectomy” (Washington, 2006, p. 190). Having gone to the hospital for what she was told was a necessary appendectomy, the physician surreptitiously rendered Hamer sterile while she was under anesthesia, a fact that the patient didn’t fnd out about for some time. Tis was not by any means an unusual practice. McWhorter (2009) writes that in “California, where the largest number of eugenic sterilizations took place, three-​fourths of those sterilized under the sterilization law were people of color” (p. 215). Dorothy Roberts (1997) noted that in many states, especially in the South, eugenic policies that were originally directed at decreasing procreation among persons diagnosed as feeble-​minded or mentally ill gradually graded over into race-​based birth control policies. In these cases “welfare” recipients, mainly African Americans, were “voluntarily” sterilized upon birth of a third child, for example, or faced the possibility of losing support payments (Britton, 1963; McWhorter, 2009; Schoen, 2005). In Mississippi in the 1960s some unmarried Black women on public assistance with more than one child were ofered a choice between prison and sterilization (“Nipped in the Bud,” 1964). Schoen (2005) added that as early as the Great Depression, the majority of those targeted for sterilization in North Carolina were receiving some form of public assistance (p. 90). In that state, the eugenics board that acted on involuntary sterilization procedures was part of the Department of Public Welfare (Begos et al., 2012). As alluded to in Chapter 2, Native Americans were frequently the targets of eugenic policies during the eugenic alarm era, and many of these practices continued for decades. Tey again address the connection between colonialism and eugenic control. As Susan Burch discusses in her 2021 book Committed, many Native Americans were diagnosed and forcibly institutionalized in asylums based on Western medical criteria, which included assumptions about hereditary degeneracy. Native women were ofen sterilized following “illegitimate” births, and social workers were taxed with the responsibility of gaining “consent” from such women. Ofen, though, procedures would be done with neither consent nor a law in force supporting

68  Eugenics, Genetics, and Disability them (Teobald, 2019). During the 1970s thousands of Native American women were also forcibly sterilized in government-​run facilities, ofen without the aid of interpreters for those who did not speak English. Torpy (2000) writes that in many of these “cases, doctors worked in conjunction with a social worker, threatening to withdraw patients’ welfare benefts or take their children from them unless they underwent sterilization” (p. 13). Te latter threat was especially troubling since such children were ofen placed with Caucasian families or in boarding schools outside the tribe that ironically attempted to “Americanize” these Native American children. Women who were not deemed to be “dysgenic” but who desired access to sterilization to control the size of their families ofen could not gain such access, as in many states the procedure was only to be used for eugenic purposes. Johanna Schoen (2005) writes that in some cases these women willingly accepted an inaccurate feeble-​minded diagnosis so they could gain access to sterilization. Certainly it would not be difcult to purposely fail an IQ test, and women who were poor, especially persons of color, were generally thought to be feeble-​minded in any case, especially if they had children out of wedlock. Schoen adds that especially later in the eugenic era, a mental retardation or mental illness diagnosis wasn’t even necessary, as these other target indicators (sexual behavior outside of marriage, poverty and/​or minority status, welfare receipt, history of miscegenation) would be sufcient to allow them to access sterilization in a number of states. Over time fnancial disincentives related to sterilization or long-​term birth control use fell out of favor, but many recommended fnancial incentives for women who agreed to such measures. During the eugenic era, H. L. Mencken (1937), a noted writer and social commenter, presented a “voluntary” sterilization plan whereby the government would pay individuals a fnancial incentive that correlated with their IQ for agreeing to sterilization. Te lower the IQ, the more money a recipient would be ofered. Nobel Prize winner William Shockley (1992) similarly foated such an idea decades later. Tis program would ofer a payment of “$1,000 for each point below 100 I.Q.” to persons with intellectual disabilities who agreed to get sterilized (p. 211). In a book published a year prior to Shockley’s “thinking exercise,” Dwight Ingle (1973) made a similar suggestion. “Can our country aford to pay millions of people to remain childless?” he asked in the book. “I believe it can,” he responded, “aford to spend quite a bit more to be relieved of the costs of wasted lives” (p. 104). Schemes such as these were based on the assumption

Eugenic Movement and Social Work Profession  69 of intergenerational dependency; in other words, that the children of “welfare” parents would naturally themselves be long-​term recipients. Proposals have more recently focused on providing a fnancial incentive for poor women who agree to use (or be implanted with) a long-​acting form of birth control. Perhaps the best-​known were the Norplant proposals considered by a number of states in the 1990s. Tese generally provided money to women on Aid to Families with Dependent Children (AFDC) for agreeing to be implanted with the long-​acting contraceptive (Arthur, 1992; Cockburn, 1994; Henley, 1993; Roberts, 1997). While removal from AFDC or other forms of support for having additional children was viewed as punitive, providing increased money was considered to be non-​coercive. For a woman struggling to feed her children, however, even a small amount of money can be difcult to turn away from (Roberts, 1997), even if it comes with a loss of her basic right to procreation. Recommendations have also been made repeatedly to require contraception or even sterilization (almost always of the mother) in cases of child abuse or neglect. As recently as 2005 one physician suggested “coerced contraception” in such cases (Turber, 2005). At times it has been not the state or federal government but rather private organizations that have attempted to provide procreation-​ related incentives. One contemporary example is Project Prevention, formerly known as CRACK (Children Requiring A Caring Kommunity). Tis organization provides fnancial inducements to potential parents (especially poor women) who are or have been addicted to alcohol or drugs and who agree to permanent (tubal ligation) or semipermanent (Depo-​Provera) birth control in exchange for the money (Smith-​McKeever et al., 2006). While many critics contend that the program has eugenic undertones and primarily targets poor minority women, the organization counters that the majority of their clients are White, and that it is a voluntary program devoid of coercion (Smith-​McKeever et al., 2006; Tyer, 2016). It should be noted, though, that the number of African American women targeted by the program is highly disproportional, even if the raw numbers (Caucasians and African Americans) are fairly even. While the program may be voluntary, it is true that they specifcally reach out to those in poor neighborhoods, and understand that the small cash payment will be an inducement only for persons experiencing poverty (Monroe & Alexander, Jr., 2005; Shatila et al., 2005). While Project Prevention contends that it is protecting children who are not yet born from potential abuse or addiction, it’s certainly the case that most of those who are “served” by the program have little access to decent mental

70  Eugenics, Genetics, and Disability health or drug addiction treatment, having either Medicaid or no insurance coverage at all. One should also question the ability to gain truly informed consent from someone who is actively addicted, which is the population primarily targeted. Social workers were frequently the professionals who worked most closely with persons, usually women, who have been viewed as the most appropriate targets for eugenic control, either because of perceived disability status, poverty, addiction, welfare receipt, assumptions of or past history of alleged child abuse and neglect, etc. Terefore they have ofen served a key role in ofering either punitive measures or incentives (Anastas, 2011, 2012; Begos et al., 2012). Social workers were also gatekeepers to needed services or fnancial benefts, and because of this gatekeeping role they have certainly had a degree of power over potential recipients that could make what they may have felt were even the most nebulous suggestions appear to their clients to be quid pro quo requests. In their book Against Teir Will, North Carolina’s Sterilization Program and the Campaign for Reparations, Begos and his co-​authors (2012) discuss the state’s sterilization program, and eforts over the past few decades to gain reparations for victims who were forced to undergo the procedure. While some states have made ofcial apologies, these mean little for many victims. While North Carolina set up a fund to provide a small amount of compensation to victims, it also set up roadblocks that made it difcult for victims to recover money. In many cases, records were incomplete or lost, or the state contended that either it wasn’t a state-​authorized person who required the sterilization (and therefore the state couldn’t be held responsible) or it wasn’t clear whether the procedure was or was not “voluntary.” Also, as with federal reparations for the Tuskegee experiment, many of the victims had already passed on by the time the state fnally acted. As a number of scholars have pointed out, and as will be revisited below, these eugenic and quasi-​eugenic practices that have targeted racial and ethnic minorities, and particularly African Americans, weigh heavily on contemporary research and practice concerns, and lead to a number of problematic paradoxes (Walton, 2011). For example, conducting research on the diseases that disproportionally impact minority populations (e.g., sickle cell) can be viewed as a benefcial way of fnding needed information on and hopefully preventing such issues, but can also be interpreted as an entry point for exploiting those who are afected, or for limiting their insurance options (Shakespeare, 2005). Prenatal testing coupled with the option of

Eugenic Movement and Social Work Profession  71 abortion that is specifcally directed at disadvantaged minority populations can similarly be perceived as yet another way that society is, through presumably altruistic means, attempting to minimize the birth of such persons. Tis is particularly problematic when taking into account possible economic societal incentives for reducing the number of children born to poor families who might require long-​term assistance through Medicaid or other social programs. Related to these other areas of research, as well as the interplay between eugenics and race, are questions about the potential validity of research pertaining to race and intelligence. Extending beyond this are questions of what the role of IQ measures (or other means of diagnosing intellectual disability) should be, or even whether they are necessary in the frst place. Every few decades this issue seems to arise again, and it naturally carries with it a great deal of controversy. Te most recent occasion for a nationwide discussion of this issue came with the 1994 publication of Te Bell Curve by Herrnstein and Murray. Te book supported the use of IQ tests as being the best measures of intelligence, called for their widespread use in educational and job placement, and argued that inborn intelligence was much more important than social or cultural factors in determining whether persons succeed or fail in life. Te authors focused extensively on presumptive IQ diferences between Whites and African Americans, argued that diferential intelligence was largely responsible for income and education gaps, and decried the fact that it had become taboo to research or even discuss these issues. Te book fueled a frestorm of controversy over both its methods and content. A book that provided countervailing views was entitled Te Bell Curve Debate: History, Documents, Opinions (Jacoby & Glauberman, 1995). Tis work included a historical overview of intelligence testing as it related to eugenics and racism as well as its important role in social policy development, especially related to educational policies, immigration restriction, and providing supportive rationales for discriminatory practices based on race and disability. More recently Dorothy Roberts (2015) wrote that it is not possible for “research on the genetics of intelligence” to be “socially neutral” (p. S50).

Conclusion My intention in this chapter has not been to denigrate the social work profession. It is important, however, that we understand how the feld developed

72  Eugenics, Genetics, and Disability in conjunction with the eugenics movement. Virtually all professions that were similar to social work were either largely supportive or neutral in regard to eugenic policies, especially early in the movement’s history. Physicians, in large measure, supported sterilization policies, and psychologists, especially those ensconced within institutions or with a vested interest in IQ testing, generally supported eugenic institutionalization. Many believed not only that eugenic control was benefcial for society, but that those who would be controlled by such policies were also apt to beneft, though they might not be aware of it. Additionally, the children who would not enter such dysfunctional families would also presumably be served by such practices. In fact, eugenics was ofen couched as an early form of child abuse prevention, as it was assumed that those who were targeted could not provide for their children, either emotionally or fnancially. Te Progressivist period was a time when a number of related professions were angling for credibility and attempting to carve out their individual spheres of interest, and for the most part those in the profession, including those who practiced even if they were not degreed, believed that eugenics was a useful complement to other forms of social work practice.

Notes 1. As Elisabeth Lasch-​Quinn points out in her 1993 book Black Neighbors, however, the settlement houses were not so apt to support the assimilation of African Americans into communities. 2. Margrit Shildrick (2002) adds that our fear of psychological contagion continues to play an important subconscious role in our anxiety related to persons with disabilities. I’ll touch on this again later. 3. It should be noted that at this time “race deterioration” was a general phrase that didn’t necessarily relate to race as we understand it, though many eugenicists did use the phrase specifcally to denote the Caucasian race.

5 Social Work and Contemporary Bioethical Debates Idealism among scientists is not dead, and so long as the genetic load is a danger to the well-​being of the population of any country, or of the whole world, and so long as there is a prospect that the human genome and its environment can be improved beyond their present state, eugenics in its broadest sense will continue to attract the ideals of geneticists, physicians, environmentalists, and in fact everybody else. Geneticist Bentley Glass, cited in Maranto (1999, p. 269)

Contemporary or potential future genetic practices that are ofen considered to have a relationship to historical eugenics include measures of “positive eugenics” such as cloning and genetic engineering. Procedures that are frequently equated with “negative eugenics” include prenatal testing and the aborting of impaired fetuses, as well as genetic counseling that results in a couple who is at risk for passing on a hereditary condition deciding not to have children, or, through pre-​implantation screening, deciding to create a number of embryos that can then be tested for the condition(s), with the most presumptively healthy embryo(s) being implanted. Another form of negative eugenics, as discussed above, is the provision of punitive measures or incentives to guide breeding decisions, especially among potential parents, usually females, who are considered to be incapable of providing a sound prenatal or postnatal environment for a child. While in theory fnancial or social incentives can also be employed to support breeding among “desirable” groups, as will be further discussed below, this has generally been viewed as an inefective way to enhance population quality (O’Brien & Bundy, 2009). Tis doesn’t mean, however, that such incentives won’t at times be integrated within the tax system. It’s safe to assume that social pressure to Eugenics, Genetics, and Disability in Historical and Contemporary Perspective. Gerald O’Brien, Oxford University Press. © Oxford University Press 2023. DOI: 10.1093/​oso/​9780197611234.003.0006

74  Eugenics, Genetics, and Disability have children is more important for most parents than fnancial or other tangible incentives. Importantly, however, the distinction between positive and negative eugenics only exists in theory. As Hampton (2005) rightly notes, “in practice they entail one another. Te very act of encouraging the reproduction of certain characteristics entails a privileging over others and vice versa” (p. 555). Courtney Campbell (2009) similarly wondered whether “the traditional distinction between [genetic] therapy and enhancement is no longer sustainable” (p. 47, also see Gardner, 1995). For example, the decision to implant one embryo over another due to the possible disability status of the latter can at the same time be considered a form of both positive and negative eugenics. Te reason that such decisions, at least currently, are generally considered to be a form of negative eugenics is largely due to the fact that it is more feasible to test for such things as potential disability conditions rather than characteristics such as athleticism, intelligence, or beauty. In the not-​ too-​distant future, we may consider choosing one embryo over others to be a form of positive eugenics if we select for “desirable” characteristics rather than selecting against “undesirable” ones. As noted in the introduction, there have always been questions about the proper defnition of “eugenic,” both in its historical context and in relation to current practices and proposals. Whether certain current reproductive technologies and breeding practices can rightly be considered eugenic may be questioned on several grounds. Most importantly, whereas previous practices such as sterilization and restrictive marriage were state-​sponsored, and eugenic-​based immigration restrictions federally initiated, contemporary decisions are driven largely by prospective parents themselves. Such practices are widely viewed as an important element of parental self-​ determination. Supporters argue that nondirective counseling provides potential parents with a realistic awareness of the potential child’s limitations and the possible social and economic impact on the family, and leaves the decision in their hands. One could, in fact, argue that government restrictions on genetic research or its application would be ideologically reminiscent of these earlier forms of eugenics where the breeding opportunities of persons were controlled by the state. Even more so in Nazi Germany than during the eugenic era in the United States, breeding was considered to be completely a state matter (Bock, 1983). “Fit” parents who decided to limit their fecundity and “unft” citizens who had children despite admonitions against their procreation were considered

Social Work and Bioethical Debates  75 worse than selfsh; they were viewed as traitors to the overall health of the national organism or “Volk.” In Mein Kampf (1971) the ironically childless Hitler1 wrote that it was reprehensible “to withhold healthy children from the nation. Here,” he said, “the state must act as the guardian of a millennial future in the face of which the wishes and the selfshness of the individual must appear as nothing and submit” (p. 404). While many attempt to draw a connection between Margaret Sanger and Nazi eugenic policies, the Germans burned Sanger’s books, as her call for women to take more control of their childbearing decisions ran directly counter to the Nazi view that the nation should have primary say in such matters (O’Brien, 2013b). Parental self-​determination, therefore, is ofen viewed as inimical to the state-​imposed practices that were recommended by most eugenicists during the frst decades of the 20th century. It should be noted, though, that the eugenic alarm era in the United State was characterized by both state control (negative eugenics) and personal decision-​making by “ft” parents to reproduce (positive eugenics). Eugenicists realized that while they could forcibly sterilize or institutionalize those who were deemed unft to be parents, they had limited ability to control the reproductive options of those presumed to be desirable parents. In the United States, better babies and ftter families contests at state fairs, eforts to collect family health histories, eugenic marriage certifcates, the infusion of eugenic education into college curricula, the professionalization of motherhood, and other measures were designed to both educate the general population about the importance of better breeding and encourage increased breeding among desirable parents. However, eugenicists could do little to force these parents to increase their childbearing. Even in Nazi Germany the state was somewhat limited in this regard, though in some cases, especially with non-​Germans whose territories had been taken over by the Reich, the Nazis could be decidedly heavy-​handed. In relation to populations considered to be Nordic or Aryan who were not citizens, for example, the Germans forced many young women to act as breeders within Lebensborns (translated as “well or spring of life”). In these “maternity homes” women would be required to mate with German soldiers, with the children brought up by the state to be the next generation of soldiers (for boys) or the breeders of soldiers (for girls) (Hillel & Henry, 1976). For German citizens, increased childbearing was incentivized in a wide variety of ways, and healthy Nordic women who failed to become mothers were stigmatized and shamed, whether they were married or not (Hillel & Henry,

76  Eugenics, Genetics, and Disability 1976; Proctor, 1988). One interesting incentive was that Hitler would become the ceremonial godfather “to one child in families with nine children or seven sons” (Hankins, 1937, p. 632). In both the United States and Germany, however, state control of breeding largely pertained to negative rather than positive eugenic policies and practices. Returning to the issue of state-​sponsored eugenics as compared to parental control, another important component of the issue, as introduced earlier, is that the decisions that are made by parents are largely contingent upon their presumption of micro-​or mezzo-​level issues that could arise relative to the child’s presence within the family. Tese issues might include the impact on the parents and their life goals or occupational opportunities, or the efect on siblings or other family members, the child’s presumptive quality of life, fnancial considerations, the presence of a support network, access to insurance or specifc services, past experiences with persons with disabilities, and other such issues. Raz (2009) discussed one important mezzo-​level pressure point in relation to “community eugenics,” or the fact that the parent’s social networks may be adversely impacted by the birth of a child with a disability, and this may weigh into the decision. Ofen parents of children with disabilities speak of a loss of friends following the birth of the child. One would assume that macro issues, such as the need to protect the larger gene pool or support the positive evolution of the species, don’t arise in the course of such decision-​making. While eugenics, therefore, was originally developed as a program to exact large-​scale impact on a population, it would appear that this is not the case with contemporary family-​based reproductive choices. Because of these diferences between historical eugenics and contemporary practices, writers have referred to the more recent version as “weak” or “homemade” eugenics or even “newgenics” (Brownlee, 1994; Paul, 1998; Pritchard, 2005; Wilson, 2018). However, as Stern (2012) writes, even “if dissimilar to the state-​sanctioned eugenics of the past, . . . the omnipresent pressure on American women to produce the ‘best’ or healthiest child possible using available genetic and reproductive technologies resonates with the quest for superior biological ftness and could be considered neo-​eugenic” (p. 12). It is important to note, however, that governmental support for access to genetic testing and prenatal, perinatal, and postnatal procedures may well be motivated in part by such demographic or macroeconomic concerns. As Sparrow (2011) wrote, “while the avowed motivations of the new eugenics may be new, the world its advocates would bring about turns out to

Social Work and Bioethical Debates  77 be not all that diferent from that championed by the old eugenics” (p. 39). Te nation always has a vested economic and societal interest in procreative matters, related to both the quality and quantity of children who are born. Too few children to support the retirement of their parents and grandparents or maintain the workforce or military, too many children relative to available employment opportunities, and other demographic factors can necessitate that the nation engage in various forms of social engineering related to the particular roles (e.g., becoming a parent) individuals may choose to take on. While one might presume that in a nation espousing freedom and self-​determination, overt social engineering is unlikely to exist, less obvious forms, such as incentives or disincentives built into the tax or public welfare systems, are ofen developed. Some of these have already been described earlier in the book, such as tying public assistance to the use of birth control. Another example of social engineering related to persons with disabilities is the 1990 Americans with Disabilities Act. In its eforts to support paid work for those with disabilities over support through governmental benefts such as Supplemental Security Income (SSI), the policy included work incentives that would hopefully allow greater employment opportunities for persons with disabilities. Terefore, the government may, and ofen does, develop policies that could impact parental decisions. To quote Raz (2009), “while the rhetoric of the individual choice of testing . . . is distinctly liberal, its critics argue that such choices are never free but rather directed by the invisible and visible hands of political, legal, medical and fnancial institutions” (p. 604). Tis is particularly the case in a nation that makes health care a commodity rather than a basic right. Certainly one of the major concerns that many ethicists and disability rights scholars have is that in the near future, not only will there continue to be fnancial disincentives related to bringing up a child with a disability, but the government may also provide fewer supports to ofset some of the familial costs. In other words, as testing coupled with termination of a pregnancy becomes ever more routinized and perhaps expected, which seems a certainty, policymakers and insurers as well as the general public may believe that parents who make a conscious decision to bring a child with a disability to term should be expected to bear the full costs of supporting the child (Kerr & Shakespeare, 2002; Pritchard, 2005; Shakespeare, 2005). Some may question the right “of an individual to healthcare in circumstances wherein specifc medical advice about prevention has been ignored” (Hampton, 2005, p. 556).

78  Eugenics, Genetics, and Disability Allison Carey (2009) echoed many disability scholars in writing that a “cost-​beneft analysis seems always to occupy the forefront of thinking about rights for people with disabilities” (pp. 32–​33), and Nelkin and Tancredi (1989) wrote that science and medicine are not value-​neutral, as we ofen presume, but are ofen driven by actuarial considerations of fnancial and social costs and benefts. It stands to reason that, considering the actual or presumptive health and support costs that may arise from certain disabilities, a cost-​beneft approach to these issues will always be an issue, though perhaps not overtly discussed. Wertz (1992) wrote that “cost-​beneft analyses tend to assume a utilitarian goal, maximizing the general welfare, by aggregating gains and losses” (p. 495), and utilitarianism looms large in eforts to diminish disability in society (Singer, 1994). Wertz continues by noting that private “insurance companies in the United States have already tried to withhold reimbursement for the medical care of children who were diagnosed before birth and whose parents refused abortion” (pp. 496–​497). Considering continuing controversies about medical coverage for “pre-​ existing conditions,” one might presume that support for conditions that could have been prevented would be especially threatened. Tis leads to an over-​arching concern of many in the disability community, and takes into account not only fnancial considerations but sociopolitical ones as well. While we are generally socialized to believe that a diminishment in the number of persons with disabilities is a benefcial trend, certain negative consequences may also attend such a trend (Saxton, 2000). Tere likely will be fewer supports for parents or persons with disabilities due to the smaller advocacy population, research and treatment funding related to disabilities may decrease for the same reason, stigmatization of conditions is likely to increase,2 and politicians are unlikely to spend much energy or political capital on policies that impact only a small number of persons. One embryologist contended that “soon it will be a sin of parents to have a child that carries the heavy burden of genetic disease” (cited in Neumayr, 2005, p. 23). As with Norplant bonus plans, moreover, the government could provide inducements to support ever-​expanding prenatal testing in the name of the public interest and reducing both private and public expenditures related to raising a child with a disability (Parens & Asch, 2000; Smith, 2002). While these may seem like unconventional concerns, since of course we are patterned to want to see a reduction in disabilities, the matter is not nearly as simple as we generally would like to think. Furthermore, if we increasingly diminish the status of children with disabilities who are brought to term, it

Social Work and Bioethical Debates  79 stands to reason that all forms of disablement will be seen in a more negative light, including those who contract their condition later in life. I’ll pick up on this line of thought in the next chapter. Similarly, there are justifable fears that physician-​assisted suicide laws will evolve from the “right to die” to a “duty to die” if infrm elderly persons fear that the high cost of their care may negatively impact the economic health of their families (Zanskas & Coduti, 2012, p. 457). Disability advocacy groups such as “Not Dead Yet” warn against the desire to cut medical costs by focusing on fnding ways to decrease funding related to beginning-​ of-​life and end-​of-​life care, both of which disproportionally target persons with disabilities. It is safe to assume that such fears will be especially palpable during times of national economic distress. At the other end of the life cycle, “wrongful life” or “wrongful birth” suits have been brought by parents who have argued that medical authorities didn’t perform the proper tests, or interpreted them wrong, leading them to give birth to a child with a disability where they would have chosen termination had they been given full knowledge of the condition (Liu, 1987; Ossorio, 2000; Pritchard, 2005). Ossorio (2000) notes that wrongful life suits, brought on behalf of the newborn, carry with them the assumption that living with the disability is worse that the alternative, having been aborted. Liability fears such as these suits give rise to may lead to an even greater extension of testing and diagnostics in order to provide liability protection to health care authorities. Diagnostics, Eli Clare (2017) adds, “wields immense power. It can provide us access to vital medical technology or shame us, reveal a path toward less pain, or get us locked up. It opens doors and slams them shut” (p. 41, also see French & Swain, 2001). A concern that many have in relation to new developments and treatment options, then, is that what begin as benefcial and optional alternatives that promote self-​determination will over time become expected choices, driven in part by cultural values and/​or economic governmental or insurance-​based policies (Stern, 2012). “Once enhancement becomes possible,” Sparrow (2011) noted, “refusal to adopt it will appear unreasonable” (p. 40, also see Wilson, 2018). As Nelkin and Tancredi note in their book Dangerous Diagnostics (1989), the fears that many have of testing and diagnostic programs (and again, ofen more marked for minority populations) are due in part to the fact that while they may begin as altruistic measures, they will ofen evolve in a more nefarious direction. Tey cite Margery Shaw, a geneticist, who notes approvingly that in the future potential parents could be held liable for not responding to genetic risks through pregnancy termination.

80  Eugenics, Genetics, and Disability Gina Maranto (1996) adds that “the efect of genetic and fetal screening” may be “to shif responsibility for children’s disabilities squarely onto the shoulders of the mother” (p. 257).

Eugenics Rediscovered To pick up on the historical overview presented in the previous chapter, while there was little public discourse in support of eugenics following its deployment by the Nazis, it never really went away, and in particular it found currency within the context of welfare provision. In some scientifc circles, however, eugenics reemerged as an issue of discussion during the 1960s and 1970s. Many supporters contended that connecting eugenics with Nazi policy was inappropriate, as most forms of eugenic control (especially positive eugenics) were neither mandated nor punitive. Tese discussions were particularly prominent among geneticists and medical researchers who felt that evolving research could lead the way to expanded genetic and prenatal testing as well as benefcial forms of genetic manipulation. In a 1974 article entitled “Te Specter of Eugenics,” Charles Frankel noted the recommendation of Nobel Laureate Linus Pauling, who anticipated the expansion of genetic testing. Pauling suggested that all persons allow themselves to have such tests, and that “there should be tattooed on the forehead of every young person a symbol showing” what genetic faws they test positive for (p. 28). Pauling felt that individuals would be able to refrain from falling in love and reproducing with an individual sharing their own negative genetic traits. Francis Crick, co-​discoverer of the double helix structure of DNA, questioned whether potential parents needed to be licensed prior to having children. He hypothesized that all persons could be required to take or be inoculated with a chemical prophylactic, and then later given the equivalent of an antibody when they met certain requirements, including analysis of their genetic profle (cited in Wolstenholme, 1963). Crick also contended that a newborn should only be “declared human [when it] has passed certain tests regarding its genetic endowment and . . . if it fails these tests, it forfeits the right to live” (cited in Pichot, 2009, p. 219). Tese are only a few examples from this period focusing on whether a new eugenic age lay on the horizon, and questioning the extent to which it was ethical to engage in scientifc research connected to “eugenics.” On the other side, many scholars countered what they referred to as “biological

Social Work and Bioethical Debates  81 determinism,” and held that nurture was much more important in human development than genetics (Gould, 1981a; Lewontin et al., 1984), or expressed concerns about the potential misuse of genetic research (Etzioni, 1973). Other writers supported such research, arguing that the use of the Nazi experience to denigrate all forms of eugenics was inappropriate fear-​mongering, and that policies could be instituted to ensure that genetic research was rigidly controlled and ethically carried out. What began during the 1960s as a trickle eventually led to a tsunami of books, articles, and other research and commentaries related to what has become known as the genetic revolution. Additionally, there has obviously been much in the way of popular literature and flms related to the issue, usually in the form of science fction, horror, and superhero origin stories. As most readers are likely aware, the issues that are being discussed within this book have taken on a new signifcance over the past few decades not only because of continued innovations in genetics and reproductive options but also specifcally because of the mapping of the human genome. Tom Wilkie echoed many writers when he wrote in 1993, three years afer the Human Genome Project began, that the Project “will transform human life and human history more profoundly than all the high-​tech inventions of the space age” (p. 3). We may not be too far removed, Smith (2016) writes, from the time where all newborns have their genomes “fully sequenced and analyzed before birth” (p. 186). While there isn’t space within this book to provide an overview of the various forms of current genetic research, one area that is garnering widespread recent interest is CRISPR, which is short for “clustered regularly spaced palindromic repeats” (Comfort, 2015, p. 27). Without getting into technological details, CRISPR may be the frst major efort at genetic engineering. Te technology allows researchers to change the structure of the genetic code by “cutting out” certain parts of the genetic sequence related to a deleterious condition, and replacing these with neutral messages. While this procedure is still in its early experimental stages, there already is speculation among scientists and medical professionals not only about what conditions may be diminished through its use, but also whether it can eventually be employed for the purposes of genetic enhancement, to augment a child’s intelligence or physical abilities, for example. It goes without saying that competitiveness is a core American value. Should safe enhancement opportunities be developed, there is no reason to believe that parents wouldn’t be drawn to such technology in the same

82  Eugenics, Genetics, and Disability way they are drawn to the best schools or trying to get their children on select sports teams. As Gardner (1995) wrote, “My concern is that the future may descend to genetically enhanced reproduction because enhancement would be a rational choice for competitive parents and cultures” (p. 67). He continues by noting that the prohibition “of genetic enhancement is likely to fail because compliance with the ban will be undermined by the dynamics of competitions among parents and among nations” (p. 69). We might even presume that “enhancement tourism” would become big business should the United States refuse to allow certain procedures that other nations did. Any such eforts at either genetic enhancement, cloning, or other measures of positive eugenics would be subject to extraordinarily heavy scrutiny, since we would be experimenting on a fetus that would presumably become a born child. While procedures such as CRISPR might be rationalized as an appropriate empathetic efort to delete a negative trait, enhancing or adding traits would be much more difcult to accept, especially at the experimental stage where problems could arise. One perspective that ethicists will ofen bring up in regard to such matters is a version of the “reasonable person argument.” Since we are dealing with either fetuses or very young children, who obviously can’t have a say in the matter, would the average person, being in that position, agree to the procedure? I’ll return to this question in the next chapter.

International Eugenic Eforts A great deal has been written about international eforts to provide birth control options for either population stabilization or to diminish breeding among poor families (Hartmann, 1995; Kangas, 1970). To no one’s surprise, eforts to control population growth are almost exclusively targeted at poor and marginalized subgroups. It’s ofen assumed by those who set policy that these groups reproduce more, they are viewed as less valuable to society, they have less capability to defend themselves through legal and political means from such incursions in their personal lives, they are more likely to be incentivized by minimal capital outlay, and for a range of other reasons. Fears of overpopulation and what might be referred to as other “backdoor” rationalizations to limit a specifc group’s procreational output have coexisted with eugenics past and present.

Social Work and Bioethical Debates  83 In many nations where such policies are implemented, there are numerous sociocultural and fscal incentives related to the births of males that serve as a disincentive for bearing a daughter, at least as the frst-​born child. Tis has led not only to the widespread use of prenatal testing and subsequent abortion of female fetuses in many parts of Asia (Power, 2006), but also to concerns about the long-​term problems that may arise (and to some degree already have) from gender disparities within these nations (Hu & Shi, 2020). A specifc example of a contemporary national program with a strong eugenic focus is China’s Maternal and Child Health Law (Hu & Shi, 2020; Swedin, 2006, p. 20). Tis policy, through such methods as prenatal screening coupled with forced abortions, prohibited the “reproduction of dull-​witted, idiots or blockheads” (“China’s ‘Eugenics’ Law,” 1998, p. 707). Not only was this harsh language highly ofensive to disability rights and social justice groups, but the law was additionally criticized by “the genetics research community” in many Western nations (p. 707), who are ofen discomfted by the implication that future (or current) innovations will usher in an era where nations feel compelled to compete with one another over new eugenic policies. Another problem with the law was its ambiguity, as it remained unclear exactly what constituted a serious genetic disease in need of “control” (p. 707). While the controversy over the “eugenics” law in China has somewhat subsided, the country remains at the forefront of eugenically oriented genetic research (Swedin, 2006). In addition to eforts to control the birth of children with disabilities, forced sterilization, “mandatory IUD insertions,” and other draconian measures of control have been utilized, almost exclusively on women, as part of the China’s “one-​child” policy (Currier, 2008, p. 369). While the one-​child policy was ended in 2015, its impact will be seen for generations (Feng et al., 2016; Hu & Shi, 2020). Te value of the family has always been very strong in China, and one aspect of this is that daughters have been expected to care for their aging parents and grandparents. With the large-​scale decrease in the number of females, however, many families can’t count on this support (Abrahamson, 2016). Singapore is another contemporary example of a nation that has passed policies designed to incentivize or disincentivize reproduction among various subpopulations based on their presumptive value to society. During the 1960s and 1970s, Singapore made great strides in terms of sexual equality by supporting career training, higher education, and employment for women (Lazar, 2001). To a large degree, however, this was not born out of the need to

84  Eugenics, Genetics, and Disability empower women or support social justice, but it rather served the national interest by encouraging the expansion of the national economy by supporting women’s education for their eventual inclusion in the workforce. Troughout this period females in the country did gain educational, political, and social capital because of these programs (Lazar, 2001). While these policies supported women’s roles as wage-​earners, however, they paved the way for a decrease in the nation’s population, as women subsequently married later and had fewer children. As a result, by the 1980s the country felt pressure to initiate programs to foster the marriage and procreation rates of middle-​ and upper-​class women. At the same time they provided fscal incentives to poorer women to reduce their breeding (Chan, 1985; Hartmann, 1995; Lazar, 2001). In various African nations, poor women, and especially those who have HIV, have been sterilized against their will, and ofen without being informed (Durojaye, 2018). In her book Killing the Black Body, Dorothy Roberts (1997) delineates a number of additional examples whereby women across the globe, and especially those who are poor and/​or minorities, are incentivized for using birth control or becoming sterilized. Again, ofen these incentives may be so attractive to persons in poverty that it can be questioned whether truly informed consent exists in such arrangements. As with many of the other bioethical issues that relate to these considerations, complexity arises when we consider that in many cases children born into severely high-​poverty regions are apt to experience starvation or disease and an early death. Tere certainly are humane rationales for supporting birth control eforts, though it’s also true that eforts to control devalued subpopulations are ofen couched in such humanitarian arguments.

Social Work and Contemporary Bioethics In her book Telling Genes, on the history of genetic counseling in the United States, Alexandra Minna Stern (2012) discussed the extensive cross-​fertilization between eugenics and early genetics counseling centers. She notes that the frst three “human heredity clinics” in the country were founded in the early 1940s and were “established on eugenic principles” (p. 19). Many of the early leaders in medical genetics, moreover, were also members of the American Eugenic Society (AES), and the journal of the AES regularly published articles on genetic counseling (p. 21). Over the ensuing

Social Work and Bioethical Debates  85 decades the feld of genetic counseling has attempted to distance itself from historical eugenics through an increasing focus on nondirective counseling and parental self-​determination. As alluded to above, however, both social policies and cultural norms will impact parental decisions as well as access to testing and health care options (Kerr & Shakespeare, 2002), and both may impact genetic counseling centers as well as individual counselors. Social work scholars began writing about genetics in the 1960s. Te April 1966 edition of the journal Social Work included two of the earliest writings focusing on the role of social workers in genetic counseling (Schild & Black, 1984). Sylvia Schild (1966) discussed the importance of genetic counseling not only for providing “at-​risk” families with information from which they could make an informed decision about having children, but also as a potential tool for limiting population growth. In retrospect Schild’s belief that population control could be decoupled from classism and racism and carried out in an even-​handed fashion seems quite naïve based on our awareness of how reproductive programs had actually been implemented prior to her writing. Schild contended that while medical professionals should provide genetic information to potential parents, social workers needed to work with families in processing this information for decision-​making purposes. Amelia Schultz’s (1966) article in the same issue focused less on the social work implications of genetics and more on the feld of genetic counseling in general. Over the following decades, a number of works were published that discussed the role of social workers in genetic counseling and related areas (Dils & Smith, 1980). Perhaps the most noteworthy early publication on the topic was Schild and Black’s 1984 book Social Work and Genetics: A Guide for Practice, which included an introduction to the history of eugenics and its relationship to genetic screening. Tey describe the interrelationship between genetic counseling and eugenics, noting that “[g]‌enetic counseling’s eugenic roots are visible, albeit in very altered form, in its continued commitment to an overall goal of prevention of genetic disease in society” (p. 15). Tese authors discuss genetic screening for conditions such as phenylketonuria, Tay–​Sachs and sickle cell disease, and other conditions, and highlight the role of social workers in assisting potential parents in decision-​making regarding both whether to have such tests and what to do with the information. While few social workers will actually become full-​time genetic counselors, especially as this requires specialized training and certifcation, many will work in areas that intersect with genetic counseling (Rauch, 1988; Schild

86  Eugenics, Genetics, and Disability et al., 2006). As Azri and her co-​authors (2014) note, social workers hopefully have the specialized training necessary to work with potential parents to discuss not only the traumatic impact of a screening test that is positive for a child with a disability but also to help them work through the possible fnancial, social, marital, and other relevant psychosocial concerns. As is ofen the case in discussions of genetic counseling in general, these authors maintain that such counseling must “remain nondirective so as to facilitate a choice directed by the woman, in contrast to a preference that refects the values of the practitioner” (p. 355). I’ll return to the issue of nondirectiveness in the next chapter. Given the complex nature of genetic content, education also must be tailored so that it is understandable to specifc clients, and may need to be ofered in “culturally specifc ways” (Jones & Harris, 2011, p. 383). Other writings in the profession have discussed issues such as the ethics of prenatal gender selection (Hollingsworth, 2005) and the need to integrate genetics content into social work education curriculum (Kingsberry et al., 2011). As Kingsberry et al. note, even if practitioners don’t identify as genetic counselors or work in a health care setting, all professionals are likely to confront clients facing questions about access, testing, treatment, etc. in the course of their work as genetic innovations expand. Tis is especially true for social workers in other areas of the medical feld. Even in medical settings, however, social workers are ofen not involved in important ethical decision-​making related to patient care (Brazg et al., 2015). Following the “Baby Doe” cases of the 1980s where several newborns with disabilities were not provided with life-​sustaining treatment—​decisions that were recommended by their doctor and agreed to by parents—​hospitals began to require bioethics committees to discuss difcult beginning-​of-​life and end-​of-​life cases (Lyon, 1985).3 Social workers, however, will ofen not have a seat at the table, so to speak. Moreover, one might presume that when social workers are involved, they are apt, like most of the professionals involved in such committees, to embrace a medical model of disability. It’s safe to assume that the majority of social workers who are engaged in genetic practice will approach issues from the medical rather than the social model of disabilities “given the medical dominance in many aging, health, and mental health service settings” (Kattari et al., 2017, p. 869; also see Press, 2000) where they practice. As these authors rightly note, however, the minority group or social model is much more aligned with the strengths-​based focus of the profession than the medical model, though it is normally a lesser

Social Work and Bioethical Debates  87 focus in these areas of social work education and practice. I will expand on this issue later. As one might assume, social work writings on genetics ofen focus most heavily on aspects related to social justice, self-​determination, and equal access to screening and medical and technological (including abortion) options. Werner-​Lin et al. (2016) write as follows: In a society where health disparities are likely to continue to widen as the genomic revolution further stigmatizes or bypasses marginalized populations, our profession’s call to social justice requires that education and practice expand commensurate with 21st-​century science. Yet, calls to develop social work competencies in genetics . . . have gone unheeded. (p. e52)

As these authors note, the National Association of Social Workers developed a set of recommended competencies for social workers in relation to genetics following the 2003 completion of the Human Genome Project. As was true in the eugenic alarm period, technological innovations related to genetics are ofen “introduced before the ethical, legal, or social implications are responsibly explored and therefore before adequate treatment protocols evolve” (p. e53). Tis is particularly a concern with the heavily bureaucratic and traditionally slow-​moving policymaking bodies at the federal and state levels. Advances in testing and treatment will ofen outpace the ability of such bodies to efectively provide guidelines or regulations. Te 2003 standards did note that in order “[t]‌o be able to efectively assist clients, social workers must continually examine their own backgrounds and identify their assumptions, values and beliefs related to human reproduction, medical intervention and the value of life with major disabilities” (National Association of Social Workers, 2003b, p. 14). In addition to understanding basic aspects of genetic counseling, one of the most important early developments evolving from the completion of the Genome Project pertains to “pharmacogenomics,” or the ability to analyze a patient’s genetic structure as a guide to the most appropriate medication protocol for various conditions. While this relates most clearly to medical professionals, social workers should have a basic awareness of this area (Kingsberry et al., 2011), especially as it may impact medications related to mental health diagnoses, or other drugs that may interact with a client’s psychopharmaceuticals.

88  Eugenics, Genetics, and Disability We have now moved into an era where individuals can easily obtain their genetic profle related to not only their ancestral origins but also potential disability and disease factors. Companies such as 23 and Me and Ancestry DNA provide these services, and they have become quite popular in a short period of time. Getting especially one’s medical profle in such an anonymous fashion, though, carries with it a number of ethical concerns. As with at-​home AIDS tests, disconcerting news may come to a person without the immediate support of a genetic counselor, social worker, or other professional (Stern, 2012). As Deborah Schild and her co-​authors (2006) note, another ethical quandary arises if one family member decides to obtain such a test while siblings or children choose not to. Te individual receiving the results may also know preventive actions or medical tests to take and may be placed in the difcult position of having to decide whether to disclose the information to those who may share the risk factor but don’t want to know. Caution also needs to be taken to ensure that an individual’s results or those of a close relative are not exploited by the criminal justice or other governmental system (Walton, 2011). Another more recent ethical issue that has arisen due to genetic testing capabilities relates to the employment arena (Olick, 2000). While protections certainly need to be in place to guard against the use of test results for discriminatory purposes, one could argue that there are work situations where individuals might themselves decide to not take a position or even pursue a specifc profession if their genetic profle demonstrated that they had a high chance of long-​term illness or disability due to the interaction of their genetic makeup and the requirements of that specifc job. Considering that companies not only are limited in their ability to require genetic testing but also may have strong fnancial reasons (e.g., related to workers’ compensation or health care costs) to do so, such seemingly altruistic “opportunities” for applicants may be provided in certain high-​risk industries.

Racial and Class Implications While much of this book focuses on the implications of new genetics research for persons with disabilities, and the importance of this for those in the social work profession, it needs to be stated that the social justice elements surrounding these issues embrace a broad range of marginalized or at-​risk community subgroups. Since environmental defcits are implicated in if not

Social Work and Bioethical Debates  89 causing, at least exacerbating, the potential for certain types of disabilities, those who live in environments marked by high poverty experience disability in greater ratios than others. Te exposure of children to lead paint and other toxins is only one such example of possible etiological factors in disablement. Inner-​city or rural communities that are characterized by high levels of poverty and the exodus of jobs and services are ofen toxic environments in both a real and metaphoric sense, and thus a range of disability conditions may be disproportionally seen in such communities. Both problematic yet also promising, recent research in epigenetics seems to demonstrate that at least some environmental stressors can in fact change one’s genetic structure (Chung et al., 2016), and these changes can perhaps even be passed along to descendants (Canning, 2008; Combs-​Orme, 2013; Meloni, 2015; Stelmach & Nerlich, 2015). Among other things, epigenetics supports nutrition programs, since adequate nutrition may impact the genetic structure (Combs-​Orme, 2013), as well as trauma reduction programs and other social services. Epigenetic research has particular pertinence for minority groups since they are disproportionally apt to experience the environmental stressors and interpersonal trauma that can adversely impact their genes (Lucero, 2018). Knowledge of epigenetics can be benefcial in that it provides additional support for both social service programs and eforts to curb interpersonal and family violence (White & Wastell, 2017). To quote Meloni (2015): Where should a political demand for justice stop if these epigenetic fndings will be further confrmed? And where are the boundaries between personal and collective responsibility in a context where social factors seem so massively engaged in producing aspects of our own individual biology? (p. 134)

Add to this the fact that many persons of color understandably express “concern about the use of genetic information to justify ethnic stereotypes” (Saunders, 2011, p. 337). Again, the historical record of the social work profession in relation to both eugenics and medical experimentation doesn’t provide much support for the supposition that social workers will be in the forefront of ensuring that such fears are alleviated. To repeat an important point, this “record reveals that the profession passionately embraced eugenics by recommending the use of eugenic practices for society’s most disadvantaged populations” (Saunders, p. 341). Margaret Gibson (2015) described the importance of social workers focusing on intersectionality in relation to the

90  Eugenics, Genetics, and Disability “legacy of eugenics” (p. 313). As noted, intersectionality was important in eugenic decisions, as, for example, when miscegenation was accepted as a likely indicator of moronity. As Harriet Washington (2006) discussed in her book Medical Apartheid, access to, control of, and decisions based on personal genetic information, either by governmental or private authorities, is a source of concern to minority populations that have in the past frequently been targets of medical exploitation. One doesn’t have to reach as far back as the eugenic era or even the Tuskegee syphilis study to fnd examples of this. She notes that in 1998 a large number of African American employees sued their employer “when they learned they had secretly been tested for syphilis, pregnancy, and sickle-​ cell trait without their knowledge” (p. 313). In addition to the fact that many minority groups may have less access to genetic testing and treatment due to the inequitable health care system that has been developed in the United States, many may also choose to not engage in diagnostic tests out of the very reasonable fear that such knowledge may be misused, or that powerful interests have a monetary or other incentive to control their reproductive or medical options. Few would argue against the contention that “[m]‌istrust of academic and research institutions and investigators is the most signifcant attitudinal barrier to research participation reported by African Americans” (Scharf et al., 2010, p. 880). Beeson and Duster (2002), in discussing a study on prenatal testing, noted that African American survey respondents were less likely to access fetal testing or agree to therapeutic abortion than Whites, in part due to “mistrust of the motives of genetic testing” (p. 162) but also because of concerns that abortions for conditions such as sickle cell anemia constitute a form of racial discrimination if not covert genocide. Moreover, over the past decade early experiments on genetic engineering processes such as CRISPR have shown promise in treating sickle cell disease, and therefore termination of fetuses with the condition is even less likely to be considered by parents. What Winters and McLaughlin (2020) refer to as “sof” sterilization pertains to sterilization or long-​acting birth control that is ofered to those in prison. Given the disproportionate number of minorities who are incarcerated, this issue obviously relates to social justice, and more specifcally to reproductive justice. While those in prison are to be provided with health care, and thus such options may be available, it’s important to also realize that confned persons are completely controlled, and thus their ability to provide truly informed consent may rightly be questioned. Tis is especially

Social Work and Bioethical Debates  91 the case when they believe that agreeing to such measures might reduce their sentence or lead to other benefts. In the same way that there are valid ethical concerns about recruiting imprisoned persons to engage in experimental studies, it is important that there are no incentives in place related to the use of birth control. Whether considering racial, class, geographic, or other diferences, it seems apparent that access inequity will likely relate more to “positive” than “negative” eugenic developments. Since the nation has a vested interest in the fnancial savings that might take place should the birth of those with severe disabilities be prevented, it stands to reason that politicians, insurance companies and other stakeholders will support access to screening in such cases. Should enhancement technology be developed, however, this will likely be available only to those with the ability to pay. Large-​scale utilization of such technology could potentially lead to a “genetic underclass” and tip the scales even more in support of those who are wealthy (Kerr & Shakespeare, 2002).

Notes 1. Interestingly, in both the United States and Germany, many of the more vocal supporters of eugenics had no children. 2. My assumption here is that, among other factors, stigma relates to familiarity. As I’ll further discuss in the next chapter, we are more apt to be fearful or discomfted by persons who don’t seem to fall into our general classifcation schemata. “Unconventional” persons cause anxiety in part because we may not know how to interact with them (Garland-​Tomson, 2009). Stigma is also apt to be enhanced for the reasons just stated; parents may be held to blame for giving birth to a child with a disability if they knew about the condition beforehand and refused to abort. 3. Te Baby Doe cases also involved the social work community as the Reagan administration, in its attempt to ensure that similar such cases did not arise in the future, sought to characterize them as medical neglect, leading child protective services to become involved on behalf of the newborn (Dresser, 2009; Hughes, 1993; Public Law 98-​457, 1984).

6 Te Role of the Social Model of Disability in the Bioethics Debate [W]‌ithout the support and understanding of people with disabilities, genetic research will face a loss of confdence from the very community that it presumes to beneft. . . . [T]wo concerns lead to an anxiety over a return to the eugenics era. First, the disability community lacks a voice in the genetics policy arena. Second, the promise of genetic research is ofen described as the elimination of disabilities that occur naturally within the population. Tis leads disabled people to view the genetics revolution as one designed to prevent the birth of people like them. Miller and Levine (2013, p. 95)

Importantly, some of the assumptions introduced in the previous chapters have been questioned by those disability advocates who ascribe to the minority group or social model of disability, which in many respects stands in opposition to the prevailing medical model. Rather than viewing disability from the standpoint of non-​disabled observers who believe they can make moral or evaluative judgments of what it would be like to live with a disability, these activists argue that, as in the case of any other “minority group,” only those individuals who fall into the class in question may rightly make judgments about the nature and personal meaning of living with a disability. It would be inappropriate and demeaning for a privileged White male to make assumptions of what it is like to live as an African American female, or what such an individual needs to do to be successful, or assume he would function more efectively, make better decisions, or achieve more if he were in her situation. In the same way, such presumptions are problematic when they relate to our assessment of persons with disabilities. Prior to discussing the minority group model as it relates to the issues discussed within this Eugenics, Genetics, and Disability in Historical and Contemporary Perspective. Gerald O’Brien, Oxford University Press. © Oxford University Press 2023. DOI: 10.1093/​oso/​9780197611234.003.0007

Social Model of Disability  93 book, it will be benefcial to briefy describe the evolution of this perspective and its impact on disability studies in the United States and elsewhere.

Te Minority Group Model of Disability To an extent, the minority group model of disability parallels and has borrowed heavily from preceding civil rights movements related to racial and gender identity and treatment. Focusing on consciousness-​raising and a self-​ identity that calls into question a defcit-​based identity that is imposed on one by others, and taking into account the accumulated history of group maltreatment, the minority group model questioned many of the longstanding negative presumptions of disablement (Williams, 2001). What might be referred to as the consumer rights movement in disability followed on the heels of a parents’ rights movement. Especially during the 1950s and 1960s, many parents of persons with disabilities began to question medical authorities about what was in the best interest of their children. Many of these parent advocates balked at recommendations to institutionalize their child, refusal by schools to provide educational opportunities, a lack of community services, and the general overly pessimistic view than many professionals had of their child and her or his future development (Basnett, 2001). Due to this parental movement, groups such as the Association for Retarded Citizens (ARC)1 developed in order to advocate for services for those with disabilities and provide more appropriate homelike living settings as well as work, educational, and socialization opportunities. During the same period, the concept of normalization, which originated in Northern Europe, was brought to the United States by advocates such as Wolf Wolfensberger, a long-​term Syracuse University professor. Normalization held that persons with disabilities should be treated with as few restrictions as possible (Wolfensberger, 1972). As incorporated within special education and other programs, this was ofen stated as the “least restrictive” measures or environment. In other words, such persons should not be held back by the disability, and the policies and procedures related to it, any more than was necessary. A related concept is the “right to risk,” or allowing those with disabilities to take chances, even if this meant struggle or failure, as risks, while they may be physically or emotionally challenging, are an important element of all our lives.

94  Eugenics, Genetics, and Disability Beginning in the 1970s, many persons with disabilities began to focus their attention on self-​advocacy. While parents and advocates may have had good intentions, minority group power rests largely in those who belong to the group itself. As with many who identify as LGBTQ, generational diferences may be problematic in families where a child has a disability since parents likely don’t share that identity, and thus are less capable of assisting them in negotiating the world. Writers such as Michael Oliver in the United Kingdom and Paul Longmore in the United States contended that persons with disabilities needed to control messaging about the nature of disability and its meaning, rather than have this imposed on them by others (Gill, 2001). Te model was also supported by the social constructionist and related theoretical writings of Michel Foucault, Erving Gofman, Sander Gilman, and others (Foucault, 1988; Gilman, 1988, 1995; Gofman, 1961, 1963; Turner, 2001; Williams, 2001). Tese writers questioned the modes by which marginalized persons had traditionally been presented and stereotyped, especially by medical and other authorities (Basnett, 2001). As with the 1954 Montgomery bus boycott or the 1969 Stonewall riots, movements ofen are initiated by major “trigger events” that spur advocacy and coalition development. While consciousness-​raising and the beginning of group cohesion occurs prior to such events, it is these actions and the media interest surrounding trigger events that ofen set the stage for formal creation of a social movement and coalition-​building. In the case of persons with disabilities in the United States, the primary trigger event that is ofen pointed to was the 1977 protest related to the Rehabilitation Act of 1973 (Davis, 2015). Te 1973 Rehabilitation Act was primarily designed to provide funding for services required by persons with disabilities. In that way it was similar to most previous rehabilitation policies. Toward the end of the legislative process, however, a brief paragraph (Section 504) was added, which, while somewhat vague, appeared to protect persons with disabilities from discrimination by the federal government and its contractors. Richard Scotch (2001) notes that the origination of this statement was somewhat mysterious, as it wasn’t included by disability rights groups, there was very little publicity surrounding it, and most politicians voting for the bill paid little attention to it. For these and other reasons, the federal government, and specifcally the now-​disbanded Department of Health, Education, and Welfare (HEW), didn’t enforce this element of the policy for several years. Tis caused the nascent disability rights movement to take matters into their own hands. Tey

Social Model of Disability  95 held a “sit-​in” at several HEW buildings in 1977 and refused to leave until Section 504 was implemented. HEW eventually agreed to include persons with disabilities as a protected class, and from this event the disability rights movement became a major force in society (Davis, 2015; Scotch, 2001). Previous to the HEW sit-​ins, Ed Roberts was an important fgure in disability rights. Roberts had polio and used a wheelchair. Roberts attended the University of California at Berkeley but faced numerous accessibility and other barriers. He advocated for his right to attend the university, as well as for the rights of others who faced similar challenges, and from this advocacy grew the Centers for Independent Living movement. Tese centers would be supportive spaces to advocate for disability rights, assist with accommodation provision, and attempt to garner funding to support the movement to independent (or at least “less-​dependent”) living situations for persons with disabilities (Shapiro, 1993). Te disability rights movement has expanded greatly over the years, and experienced growing pains similar to other identity-​based movements. Tis is due not only to the intersectionality issues that occur in any such movement, but also to the large number of disability conditions, as well as the fact that many persons attain their condition later in life. While those who are born with a disability are more apt to view it as an intrinsic element of who they are, persons who become disabled later in life are more likely to see it as a problem to be “fxed” (Garland-​Tomson, 2019). While there is much disagreement among those who consider themselves to be a part of this movement about prioritization of advocacy goals and the action steps to take, there is also much that connects them to one another. As noted, perhaps the most important tenet that all embrace is the importance of persons with disabilities to have a strong voice in those social, political, and economic issues that impact them, both individually and as a group. Te primary tenets of the minority group or social model of disabilities, in contrast to the medical model, begins then with consciousness-​raising: consideration of the meaning that having or living with a disability carries with it, and who is to defne what that meaning should be. As one might expect, those who have disabilities are the ones to decide the impact the condition has on their lives. While others may assume that the disability condition is the person’s most important trait, source of identity, or, particularly important for our purposes, issue requiring social work intervention, it is inappropriate in relation to anyone with a “minority condition” to prejudge how this likely impacts their life and identity, just as for those with multiple minority

96  Eugenics, Genetics, and Disability identities, it’s wrong to presuppose which of these is or should be “most important” to the person.2 Tose holding to a medical model will likely see a disability as a weakness or faw, since a medical perspective focuses on functionality and cure and looks intensely at defcits and negatively attributed variances from the norm. One could argue, in fact, that the entire medical infrastructure is constructed on a defcit foundation. Conditions that cannot be cured may be seen as a failure, and persons with the condition may be surreptitiously blamed for this failure, or at least feel they are to blame (Larson, 1998). As Mackelprang and Salsgiver (2015) note, the medical model largely evolved from the “moral model,” or the paternalistic belief that we needed to care for persons with disabilities for ethical or religious reasons. Counter to the medical model, persons with disabilities may at the same time understand (better than anyone else) the limitations and challenges the condition(s) lead to and also draw benefts from it. Having the condition may have assisted them in negotiating the world; they may believe that it has helped them properly prioritize what is important in life; they may have found pride and satisfaction in their ability to work through problems; have developed an important support group, etc. While others naturally may assume that those with disabilities long for a cure, they may have reached a comfort level with the condition and view it as an inextricable part of who they are, especially if they were born with the condition or acquired it early in life. Indeed, some persons who are deaf or of short stature would prefer a child who shares this feature and is more “like them.” In some cases a woman or couple may choose to only carry to term the fetus that shares their “condition” (D. Davis, 1997; Hollins, 2000; Saxton, 2017; Shakespeare, 2005). According to Anna Middleton (2004), “Te issue of deaf parents preferring to have deaf children is not a new phenomenon; it has been well documented in the past. Passing on deafness to the next generation would keep the Deaf culture alive and would mean that the Deaf community would continue to thrive” (p. 140). Silvia Camporesi (2015) writes that some clinics dedicated to assisted reproduction have selected embryos positive for “deafness and achondroplasia (genetic-​based dwarfsm)” for implantation (p. 132). Dena Davis (1997), with a contrary view, argues that given the limited opportunities that are aforded to those who are deaf, such a decision by parents is selfsh as it places the child in a vulnerable position, both socially and economically.

Social Model of Disability  97 While others may presume that the disability itself has impeded their capabilities, those with disabilities may counter that they are more held back by environmental, structural, and social limitations, and that the target for change needs to be more in the structural or environmental milieu rather than at the personal level (Longmore & Umansky, 2001). Te minority group model of disabilities does not disavow medicine and rehabilitation, but holds that the power within these systems needs to be redirected in a more consumer-​friendly manner (French & Swain, 2001). Nor does the minority group perspective view disability as simply a matter of social construction. Disability rights scholars acknowledge that disabilities are apt to result in physiological, emotional, and/​or cognitive impairments or difculties that carry with them extreme difculty and struggle, and that medical or rehabilitation support can assist individuals in more efectively dealing with these problems (Lee, 2002). “Cure,” however, should not be the presumptive outcome of intervention, especially as the concept of cure carries with it a state of perfectibility that belies our frail humanity. We all have our faults, failings, inabilities, and struggles, and some disability advocates would contend that our tendency to be overly pessimistic about disablement arises in large part from our awareness, largely subconscious, of our own vulnerability, and the inherent fears that this gives rise to (Livneh, 1991). A term that is frequently used in disability writings is “temporarily able-​bodied.” Tis expresses the fact that not only could any of us become disabled at any given time, but the majority of us will, especially at some point toward the end of our lives. While one might think that this commonality would reduce prejudice against persons with disabilities, as Kittay and Kittay (2000) write, it likely has the opposite efect.

Bioethics, Eugenics, and the Social Model Picking up on a point of interest from the previous chapter, many persons who hold to the minority group or social model of disability contend that even if parental self-​determination is viewed as the driving force behind the development and utilization of genetic technological advances, such decisions take place not within a sociocultural vacuum, but rather against the backdrop of a society that is overly pessimistic and at times even resentful or fearful of persons with disabilities (Dresser, 2009; Saxton, 2000). Moreover,

98  Eugenics, Genetics, and Disability such advocates frequently note, the powerful medical industry in the nation plays a highly infuential role in framing disability for prospective parents and the public as well, and also has a vested interest in the widespread development, funding, and deployment of technology that will lead to cost savings for themselves. To quote George Estreich (2019): I don’t really have anything to say about the ethics of selective abortion. I can’t imagine myself telling any women not to make use of [a prenatal test], which many have found useful; nor would I presume to tell anyone what to do with the test results. What interests me is the climate of assumption; the ideas and information that feed into the choice, the ideas we have about people who are legibly diferent, and the way these get turned into the stories on our screens. (p. 53)

Adding complexity to these issues is the fact that “disability” lends itself to a wide variety of conditions. Even the staunchest opponents of fetal selection would be hard pressed to disallow testing in the most extreme cases, as, for example, in the case of Tay–​Sachs disease or anencephaly. Rosemarie Garland-​Tomson (2012) contends that Tay–​Sachs “is the anchor of any reasonable eugenic argument,” since the condition is so problematic, with most children in pain and dying early, that even most disability advocates would agree that eforts to limit it through prenatal testing and abortion are reasonable (p. 349). On the other hand, supporters of testing ofen question why it is taken for granted as appropriate in cases of Down syndrome children, where little apparent pain or discomfort is involved, and the person may live a fairly independent life. Further muddying the waters, even a specifc disability has a wide range of impact on diferent individuals, which relates not only to the varying physiological impacts of the condition but also to a host of additional psychological, social, life-​stage, and environmental elements (Marinelli & Dell Orto, 1991; Parens & Asch, 2000). Because of their heavy focus on environmental efects on human behavior, social workers should certainly understand this. Te lines that are drawn by parents, physicians, social workers, policymakers, and others who are involved in the decisions, on either a macro or micro level, will pertain not only to factual considerations related to the type of impairment, but also to a host of subjective elements, including but not limited to prior knowledge of and experience with disability, resource concerns, media and metaphoric presentations of such

Social Model of Disability  99 individuals (Garland-​Tomson, 2001; O’Brien, 2003a), personal religious beliefs and values, economic and professional self-​interest, and referent group beliefs. To reintroduce a point that was made early in this book, a number of disability studies writers over the past few decades have focused on what they have termed the expressivist objection to prenatal screening (Wilson, 2018). How can we at the same time say that we value persons with disabilities while also holding that the decision to terminate a pregnancy because a child would have a similar disability is not only reasonable but prudent? Are we covertly saying to these living persons that it would be better if such a decision was made in their case also? It’s true that “prospective parents do not decide about testing to hurt existing disabled people but to implement their own familial goals,” and therefore from their perspective no wider “message” about disability is being sent (Parens & Asch, 2000, p. 15). As noted previously, however, the increased availability of and perhaps pressure to undertake such testing and make specifc decisions in light of the results does send a very clear message about the nature of living with a disability. Many disability rights advocates have had difculties coming to grips with these issues in part because the vast majority have a “pro-​choice” orientation (Steinbock, 2000; Wertz, 1992). Martha Saxton (2017) argues that Disabled women activists do not want to be associated with the violent anti-​ choice movement. In the disability community we make a clear distinction between our views and those of anti-​abortion groups. Tere may have been eforts to court disabled people to support anti-​abortion ideology, but anti-​ abortion groups have never taken up the issues of expanding disability resources for disabled people or parents of disabled children, never lobbied for disability legislation. Tey have shown no interest in disabled people afer they were born. (pp. 80–​81)

While Saxton paints all “pro-​life” persons with a very broad brush here, for the most part she is quite accurate, especially in considering persons and groups with a strong fundamentalist background or whose interest in the pro-​life movement is heavily paternalistic. One would not expect to fnd these groups to be at the forefront when it comes to issues such as expanded health care access, increased services, paid parental leave, etc., and they will ofen show their opposition to such initiatives by voting for legislators who overtly oppose such policies.

100  Eugenics, Genetics, and Disability Disability scholars have borrowed heavily from the feminist movement, and self-​determination is a core value of disability rights. Te struggles many of these scholars have had are typifed in the writings of the late Adrienne Asch, who was perhaps the most infuential bioethicist in the disability rights circle. Asch attempted to reconcile her pro-​choice beliefs with her equally strong feelings that fetuses with disabilities were being increasingly targeted for elimination through genetic testing. Asch wrote that “by expending substantial resources to determine the genes for some characteristics but not others, health professionals reinforce society’s negative view about what disability means for a life” (Asch, 2000, p. 240). Asch acknowledged the difculty of such parental decisions, as well as the fact that disability is not wholly a matter of social construction, but carries with it real-​world challenges to those who are afected. Like many disability rights advocates, she noted that her criticism of prenatal testing and the subsequent abortion of potentially disabled fetuses was a critique aimed not at parents, but rather at professionals who work with such families. Such professionals may, even in ways that they are not fully conscious of, share with parents their negative bias related to disablement (Asch, 2000). She attempted to reconcile this quandary by drawing on the expressivist argument, and saying that if the decision is made based on a particular characteristic of the fetus such as disability status or gender, this is ethically troubling in part because of the message it imparts. Many critics would contend that lumping disability and gender together is problematic, for reasons that were noted previously, though the expressivist argument is to a degree valid in either case. James Nelson (2000) contends that questioning the reason for termination of a pregnancy leads to a slippery slope where procedures can be condemned on a wide range of counts. One important issue that pertains to the questions raised here is how we think of concepts such as sufering. We ofen tend to confate sufering with pain, for example, and assume that those with X amount of pain will sufer X amount. At the same time, however, we realize that struggle is a multifaceted concept that is the sum total of many biopsychosocial features aside from the actual pain. We may be presumptive in judging the struggle of another. We may internally feel anxiety or compassion when we see someone with cerebral palsy struggle to navigate stairs. Our tendency is to want to assist them, in part to ease our own discordant feelings. It is important in those situations to ask ourselves how closely associated our assumption of struggle or pain is with the felt reality of that individual. As with the term “sufering with Down

Social Model of Disability  101 syndrome,” it may be helpful to ask who is really the one doing the sufering (Botkin, 2000). Even in such cases, “many individuals with mild intellectual disabilities indicate that the dynamics of social exclusion, marginalization, and inability to lead a ‘normal life’ contribute signifcantly to the sufering they experience” (Carlson, 2010, p. 169). Te desire to end future sufering is central to prenatal testing, and in many cases where forthcoming prospects are cloudy we are apt to error on the side of termination (Carlson, 2010). When we conceptually project ourselves into a disabled body, and especially a body marked by an intellectual disability, we perceive reality from a completely diferent standpoint than the person with the disability, especially if that person, such as is the case of most of those with cognitive or intellectual disabilities, has never known any other reality. We can no more understand accurately what it is like to have a disability we don’t have than we can understand what it would be if to be a diferent race, ethnicity, or gender. If how we identify “sufering” is problematic, so too is the concept of severity. Exactly what constitutes a severe disability is largely in the eye of the beholder. “How burdensome a disability may be depends greatly on its particular features and the circumstances of children and parents, including the concept of parenthood they embrace” (Ruddick, 2000, p. 96). As noted previously, line-​drawing questions related to what constitutes “severity” as well as “risk” rise to the fore ofen when considering how far prenatal testing should be taken. Just as there would always be the “bottom 10%” of the population to eugenicists, there will always be a list of “most severe” conditions, regardless of how many are eliminated or “cured.” Te issues described above pertaining to sufering give rise to questions about the nature of our anxieties about disablement. As Margrit Shildrick (2002) wrote, the “disruption of corporeal integrity and the open display of bodily vulnerability is always a moment for anxiety and very ofen hostility. Where disabled people in contemporary developed societies are, more generally, accorded all sorts of legal and social rights which overtly challenge discrimination against them, there is nevertheless a persistent unease occasioned by corporeal diference” (p. 53). To reiterate a point made early in this book, the hostility and fear that many feel when confronted with disability seems well beyond what might be expected. Tis is in large part due to the fact that our reactions are ofen the result of subconscious fears of dismemberment, loss of intelligence, etc. Again, knowledge of disablement prefgures that we are all vulnerable, and the loss of bodily integrity may

102  Eugenics, Genetics, and Disability foreshadow our own mortality. Rosemarie Garland-​Tomson (2012) noted that “[d]‌isability and people with disabilities are eugenic targets because we embody the unpredictable and intractable nature of temporality” (p. 352). While the vast majority of disabilities are not communicable, they are metaphorically infectious. “Te disabled body, the body that resists the conscious control of the will, that is efectively out of control, may carry no infectious agents, and yet . . . it is treated as though it were contaminatory” (Shildrick, 2002, p. 73). It’s not at all surprising that organism metaphors related to contagion have been a frequent metaphor theme in both eugenic and more contemporary writings on disability (O’Brien, 2003a, 2010). Te term “sterilization” itself carries with it the belief in decontamination. Tis was decontamination not of the person, though, but of the gene pool. “Race hygiene” was practically a religion for Hitler and the Nazis, and it’s in no way surprising that the gas chambers were created as showers. Individual hygiene and race hygiene were intimately connected to one another. Shildrick (2002) writes that We understand that a contaminated object is one to be avoided or kept at a safe distance, lest we too become afected, our bodies opened up to the forces of disintegration. Our well-​being, our very lives, are dependent then on the maintenance of a self-​protective detachment, an interval not only between ourselves and evidently dangerous others—​be they microbes, parasites, or infected human bodies—​but also between ourselves and the mere potential of risk. (p. 69)

In her landmark book Purity and Danger, Mary Douglas (1984) writes that there can be a “marvellous correspondence between the avoidance of contagious disease and ritual avoidance” (p. 29). She adds that “our pollution behavior is the reaction which condemns any object or idea likely to confuse or contradict cherished classifcations” (p. 36). Tis connects with what was noted above about disability anxiety partly resulting from both novelty and thus classifcation confusion and the inherent fear of the loss of bodily integrity. Novelty in how people look or behave may be appealing, but only if it is controlled and met on our own terms. Many persons who in the past willingly attended “freak shows,” toured mental facilities such as Bethlem in London, or went to other such exhibitions to purposefully confront varieties of disablement would have no doubt been deeply ofended if meeting such a person with no forewarning in public. To again quote Douglas, we ofen “feel

Social Model of Disability  103 anxiety [when] confronted with anomaly” (p. 39). We may not know how to behave or engage with persons who have certain disabilities, and some portion of the embarrassment we may feel is likely to be transferred as anger or annoyance onto the person who unwittingly “caused” it. As noted previously, a key point of connection between historical eugenics and contemporary genetic research is that we continue to focus almost extensively not only on individuals with disabilities, but most particularly on those with intellectual disabilities, or with a combination of physical and intellectual disabilities. We might ask why this is the case. What exactly is it about presumptive intelligence that we value so highly that we believe a life with lesser intellectual capacity would not be worth living? To quote Eli Clare (2017), whenever “we defend our intelligence, we come close to disowning intellectually disabled people” (p. 158). Philosophers such as Kant held that it was reason that separated Homo sapiens from other animals (Nussbaum, 2006), and therefore, as introduced in Chapter 3, those humans who are adjudged to have less reason are ofen conceptualized as being closer than others to the great apes or other presumably intelligent non-​human animals. Te efort to distance ourselves from those with intellectual disabilities predates the eugenic era by centuries. However, this distancing was largely given over to “objective” science during the eugenic era. Tis was, however, a science based frmly on a combination of ableism and White nationalism. Objectivist-​ oriented cost-​ beneft concerns were central to eugenic arguments, and arguments surrounding cost-​beneft considerations are particularly apt to be raised in relation to persons with intellectual disabilities, who are viewed as not contributing to society but requiring medical and other forms of support. Not only were persons with disabilities assumed to be “fnancial liabilities” to society, but cost-​related metaphors were a frequent element of eugenic writings, with feeble-​minded persons regarded, for example, as “worthless by-​product[s]‌of human evolution” (Jennings, 1930, p. 226). Similar rationales related to cost savings, as noted, remain in play and are important features in arguments related to prenatal testing. “I have trouble,” disability advocate Harriet McBryde Johnson (2017) wrote, “with basing life-​ and-​death decisions on market considerations when the market is structured by prejudice” (p. 498). Like Johnson, many disability rights scholars focus on the potential adverse impact of cost savings on future eforts to diminish or even extinguish disablement from society. As with many aspects of disability objectifcation, the most perverse examples of eugenic arguments based on economic considerations found their home in the Tird Reich. It was here

104  Eugenics, Genetics, and Disability that schoolchildren were actually given math problems where they were asked to calculate how much taxpayer money would be saved if those with intellectual disabilities and other societal “parasites” did not exist and require support (Fries, 2019; Weindling, 1989).

Notes 1. Te phrase is no longer used by the organization, given the negative connotation surrounding the term “retarded,” and the group simply goes by “Te ARC.” 2. An example of the presumptions of others regarding intersectionality and identity could be seen in the 2008 Democratic primary election. Many news reporters would try to target Black females to ask them whether they supported Barack Obama or Hillary Clinton. While they generally weren’t obvious about it, the assumption they were making was this decision would provide insight about whether these persons valued their racial or gender identity more, especially since there had never been a Black or female president.

7 Implications for the Social Work Profession Depicting compulsory sterilization as a Nazi-​ like scandal in America’s past elicits powerful emotions, but it is more useful as catharsis than as history. Although it feels good to contrast an enlightened us of today with a prejudiced them of the past, doing so neither helps us to comprehend the tragedy of eugenics nor prevents it from happening again. Ladd-​Taylor (2004, p. 281)

Te issues that arise in the previous chapters are exceedingly complex, given the wide range of conditions and experiences that the term “disability” entails, and thus there are no simple answers to the questions that are posed.1 As noted, my intention has been neither to second-​guess parental decisions nor to question the morality of the parents who confront them. Rather, the motivation for this book is to advance this important conversation within social work and related professions. Tis is particularly important considering the social work’s professed role as an advocacy voice for traditionally disempowered and historically marginalized groups. Tis being the case, one might presume that the profession has been at the forefront of disability rights, though this is far from the truth (DePoy & Gilson, 2012). As Gourdine and Sanders noted (2002), “Given social work’s history in administering to the disenfranchised,” the profession’s “lack of scholarship and leadership concerning persons with disabilities is both puzzling and disappointing” (p. 208). Beaulaurier and Taylor (2012) add that especially for those persons with disabilities who hold to a minority group model or value individual empowerment, many “have come to distrust social workers and other professionals whom they believe ofen do things to rather than with people with disabilities” (p. 45). As noted previously, it stands to Eugenics, Genetics, and Disability in Historical and Contemporary Perspective. Gerald O’Brien, Oxford University Press. © Oxford University Press 2023. DOI: 10.1093/​oso/​9780197611234.003.0008

106  Eugenics, Genetics, and Disability reason that many social workers who engage frequently with persons who are disabled or their family members do so within the context of a medical or rehabilitation setting. Tey therefore have strong connections with or incentives for pleasing or catering to medical providers or institutions, and have experienced professional socialization within a medical model that is ofen paternalistic in its approach to disability. Social workers and others who engage with those who have disabilities need to embrace the strengths perspective that we purportedly value (Beaulaurier & Taylor, 2012; Gilson et al., 1998). As Galambos (2004) wrote: Data from studies infer that social work interactions with this population and their families tend to focus less on abilities and more on the disability and presenting problem. Although such an approach might be deemed acceptable practice, social workers appear unable to move beyond this approach to concentrate on client strengths and provide extensive assessment and services beyond the presenting problem. (p. 163)

Many of those who have written about disability issues in social work have contended that professionals in the feld as well as professional education programs have not embraced the minority group model of disability in a meaningful way (DePoy & Gilson, 2012; Gilson & DePoy, 2002; Hiranandani, 2005; O’Brien, 2011a). Mackelprang and Salsgiver, for example, wrote (1996) that “the profession has not embraced the causes of people with disabilities as it has other oppressed groups. Consequently, relatively few social workers work with people with disabilities, few people with disability enter the profession, and the profession has done little to promote disability rights” (p. 7). Te one portion of this quote I would take issue with is that many, perhaps most, social workers certainly do work with persons with disabilities, especially at certain points in their careers. Tis may not be their major “population,” but it’s very difcult to work in the feld for too long without coming into contact with persons who are diagnosed as being disabled, and especially if one considers mental illness diagnoses. Tus a basic understanding of contemporary disability issues is essential for those in the feld, regardless of what their primary feld of practice is. Taking into efect the aging of the population, and the correlation between old age and disability, it’s safe to assume that it will even be more likely in the near future that social workers will be expected to have a good understanding of disability. Considering the

Implications for the Social Work Profession  107 fact that surveys show that between 15% and 20% of the population report having a disability, most professionals won’t go too long in the profession before engaging with such persons (Sniatecki et al., 2018). Kattari and her co-​authors (2017) noted that disability is ofen included in directives to social workers as something that professionals can help to overcome, and “by including disability alongside poverty, addiction, and other negative things as something to be overcome, this may further reinforce the medical model view of disability as non-​normative and problematic” (p. 870). Tose with disabilities may approach helping professionals for the same broad range of reasons that anyone else does, and as disability rights advocates are quick to point out, they may not even be interested in “overcoming” their disability. Ofen the more important role of social workers is to assist them in navigating the convoluted bureaucratic steps that must be “overcome” in order to receive services. Gilson et al. (1998) note the following in writing about those social service programs that relate to disability concerns: “[I]‌t is hoped that a new consumer-​driven approach to understanding disability will enable future practitioners to reform the structural, as well as (inter)personal, barriers to meet the needs and aspirations of individuals with disabilities” (p. 193). As many scholars in the profession have noted, few social work education programs include disability as a particular area of focus (Laws et al., 2010), and this is certainly one reason why persons with disabilities are “underrepresented in the profession” (Mackelprang, 2010, p. 88). Gilson and DePoy contended (2002) that the minority group model of disability, “although consistent with the mission and values of social work, receives limited attention in social work curricula” (p. 153). Tese authors note that social work programs have historically organized “their curricula around either populations or problem areas. In this taxonomy, disability was included under problem areas, while other vulnerable groups were included in populations. Tus disability was seen as an individual defcit rather than as a group characteristic” (p. 157). One way of conceptualizing this that is somewhat analogous to social work curricula is to think of a bookstore. While it would be typical to expect to fnd issues related to LGBTQ+​persons, African Americans, women, immigrants, etc. in a section devoted to consciousness-​raising, social justice, and human rights, disability books might be relegated to the medical/​health or special education section of the bookstore. Te mental categories that we draw on and from which we consider disability issues may be similar to this conceptual bookstore.

108  Eugenics, Genetics, and Disability In their study of social work students, Bean and Hedgpeth (2014) found that a majority of those surveyed did not feel prepared to work with persons with disabilities. Tese authors also noted that research generally has shown that while education may increase knowledge of disabilities, it is less efective at changing perceptions. Many programs rely largely on courses in other departments for disability knowledge. Moreover, ofen these other programs are couched in educational areas that have historically focused on disability through a medical model lens (e.g., nursing, special education, psychology, speech pathology). Tere has been a strong movement over the past few decades by those espousing the minority group model to encourage disability education through the humanities and the arts. Universities with disability studies minors are especially likely to have courses in such areas. In order to communicate a message that is consistent with the focus on self-​determination and empowerment, particularly in relation to vulnerable groups, the profession needs to infuse the minority group model into not only disability-​related but also general diversity, policy, and Human Behavior in the Social Environment (HBSE) classes. Students may experience much confusion given the potential range of models from which disability content may be delivered. Tey may go from a policy advocacy course that focuses on the need to empower disenfranchised groups and the negative aspects of labeling to another class that approaches the subject from a diagnostic/​medical perspective. In one context students may be told that professionals are to support consciousness-​raising activities related to the rights of persons with disabilities, and in the other the inherent message may be that their primary role is to properly diagnose and help “fx” such persons. To diminish the chance of cross-​messaging, therefore, instructors are strongly encouraged to discuss among themselves the recent history of these various frameworks, their relevance to the profession, their similarities and diferences, and what each may contribute in the efort to efectively work with persons with disabilities. Te conceptual and ethnographic understanding of disability is also an important element of any professional course focusing on the topic, and probably the starting point for such instruction. Especially in disability or mental health courses, it is also important to include frst-​person accounts by those living with a disability. Tis can be in the form of guest lectures, videos, etc. Additionally, discussions of contemporary and past eugenic practices should be expanded and contextualized within social work education, and students should develop an awareness of the relationship between historical

Implications for the Social Work Profession  109 eugenics and what is frequently termed “new eugenics.” As previously noted, current and past eforts to support or discourage procreation of particular social groups have relevance to numerous minority populations, not just persons with disabilities. Such eforts tell us a great deal about cultural values and the status accorded to these various “marginalized” groups. Tey may give rise to a range of controversial current social policy issues, such as questions surrounding the incentives or disincentives for procreation that are built into tax codes, other forms of social engineering that may weigh on decisions about bearing children, recommendations that those parents who have been found guilty of severe abuse accept sterilization as a consequence of their actions, the relationship between mental illness and assumptions of parental unftness, the myriad ethical issues surrounding groups such as Project Prevention, etc. Te profession principally views disability from a diagnostic lens, and places only minor emphasis on the eradication of oppression and commitment to diversity when it comes to persons with disability. While social workers might advocate on behalf of persons with disabilities while operating from a medical model framework, such advocacy normally takes on a paternalistic tone (Kattari et al., 2017). One might well argue that paternalistic advocacy is a misnomer, and only formalizes pejorative stereotyped views of the group in question. True advocacy requires a partnership with those who are maltreated (Friere, 1986), and a movement away from the power dynamics that are an inherent element of the medical model. Discussions of intersectionality should also include content that relates to how a disability identity interrelates with other “non-​normative” identities. Tis is especially important since “[s]‌tigmas are ofen compounded when a person belongs to multiple marginalized groups” (Sniatecki et al., 2018, p. 184), and since various biopsychosocial factors related to economic class may enhance the possibility of disablement. Just as implicit bias ofen occurs in our interactions with individuals who we assume belong to a racial minority group (Chapman et al., 2013), they surely exist in our interactions with those who have disabilities. Additionally, social workers who act in a clinical role with clients who have disabilities should be extremely wary of making prejudgments or subjective assumptions regarding the meaning or impact the condition likely has on the person, as well as beliefs about the presumptive impact of the disability on identifed problems, or their capabilities (Lightfoot & DeZelar, 2019). Individual, family, or group practice that is based on a social justice focus

110  Eugenics, Genetics, and Disability should treat disablement in a way similar to how race, age, gender, or other diferences would be approached. In others words, the unique meaning that the “status” has for the person is of primary signifcance. Many would contend that, especially in Western cultures such as the United States, there is a progressive linearity implicit in our perception and treatment of persons with disabilities. Tis view holds that while in the dark past such persons were heavily stigmatized and maltreated, in our more humane time they are supported and treated with high regard. While we would like to pat ourselves on the back for how far we’ve come, this view is both overly simplistic and highly inaccurate. As with progressive policies for African Americans, women, the LGBTQ community, and other groups, policies advancing the rights and opportunities of persons with disabilities were largely the result of in-​group coalition-​building and self-​advocacy, and have been and will continue to be marked by numerous fts and starts. Social workers need to understand the important role that members of the profession may play in policy development relative to disability and bioethical and health issues, and particularly proposals that may have possible eugenic implications. Tis is especially a concern since, as Garland Allen (1996) noted, neo-​eugenic approaches may become very attractive should the nation sufer a protracted economic downturn. During times of fnancial hardship, economic rationales for eugenic control may come to the fore, especially in covert ways. Similar to racist “dog whistles” in culture and politics (Lόpez, 2014), we ofen need to read subtle metaphorical or other clues that relate to aversive policies afecting those with disabilities. Tere are good reasons to be concerned that the gains that have been wrought in public policy and other areas may be in jeopardy during times of economic turmoil. As has been obvious, the eugenic alarm period was heavily gendered, with infuential groups led largely by powerful males (the state and federal legislatures, churches, etc.) seeking to control the reproductive opportunities of females, and primarily of marginalized or poor women. Tis is a pattern that has existed virtually since the dawn of recorded history (Iseman, 1912; Roper, 1922), and continues uninterrupted, though in diferent forms, to this day. In the summer of 2022, the U.S. Supreme Court ruled Roe v. Wade unconstitutional, and sent abortion policy back to the states. Tis raises concerns about the return of “back alley” abortions and harsh policies, especially in conservative states, that will weigh most heavily on impoverished women and families. In her book Regulating the Lives of Women, Mimi Abramovitz details the varied ways in which women have been controlled over the years

Implications for the Social Work Profession  111 by the government and other male-​dominated institutions, as well as the role of the social work profession in either supporting or standing in opposition to such policies and practices. Te recent COVID crisis has also spoken to concerns about our perception of marginalized persons, their relative worth, and the nation’s ability to place them at risk for utilitarian purposes. Not only have those with certain disability conditions been particularly vulnerable in getting or efectively fghting of the virus, but it also hasn’t been either surprising or rare to fnd subtle or even obvious statements, even by those in leadership positions, that the loss of life that might attend “opening up” the country was a reasonable price to pay for regaining our national economic footing and freedom of movement. What ofen has gone unsaid is that such losses were acceptable because it was principally either the very old and/​or persons with disabilities who would be “lost” to the virus. As noted, the history of disablement tells us in no uncertain terms that those with disabilities are always vulnerable to disparagement and maltreatment, and the social work community needs to step forward as true non-​paternalistic advocates, allies, and partners in asserting their value.

Note 1. An earlier version of much of the information in this chapter was originally presented in O’Brien (2011a). Tanks to NASW Press for permission to reprint this material.

Eugenics, Genetics, and Disability in Historical and Contemporary Perspective: Implications for the Social Work Profession Gerald OʼBrien https://doi.org/10.1093/oso/9780197611234.001.0001 Published: 2022

Online ISBN: 9780197611265

Print ISBN: 9780197611234

END MATTER

References  Published: December 2022

Subject: Social Work Research and Evidence-based Practice Collection: Oxford Scholarship Online

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Eugenics, Genetics, and Disability in Historical and Contemporary Perspective: Implications for the Social Work Profession Gerald OʼBrien https://doi.org/10.1093/oso/9780197611234.001.0001 Published: 2022

Online ISBN: 9780197611265

END MATTER

Index  Published: December 2022

Subject: Social Work Research and Evidence-based Practice Collection: Oxford Scholarship Online

Print ISBN: 9780197611234

131Index For the bene t of digital users, indexed terms that span two pages (e.g., 52–53) may, on occasion, appear on only one of those pages. 23 and Me 88 Abortion 2970–71909899100110–11 Abramovitz, Mimi 57110–11 access inequality persons with disabilities and 106869–7076–7784–85879091 Addams, Jane 5051–525760 Africa controlled breeding in 84 African-Americans procreation restriction and 24–254765–666769–70 research and 70–7190 See also miscegenation alcoholism 16–17416169–70 American Eugenics Society 84–85 Americans with Disabilities Act 76–77 anencephaly 98 the ARC 93 Asch, Adrienne 100 assisted immigration 20–21 atavism 40 Australia eugenics in 2129 Baby Doe cases 86–8791n.3 Barr, Martin 32–3355 Begos, Kevin 65–6670 The Bell Curve 71 Bell, Alexander Graham 1524–254243–4461 Bender, Daniel 53–54 Bethlem Hospital 46102–3 better babies contests 23–245355–5675 Binet, Alfred 33 bioethics social work profession and 84–88 bioethics committees 86–87 birth control 205860–6163–6468–7076–77828490–91 birth di erential.  See race suicide Bix, Amy 62–63 Bollinger Baby case 42–4364 boundaries and borders.  See immigration restriction Buck v. Bell decision 193652 Burbank, Luther 15 Burch, Susan 67–68 castration 1935 Centers for Independent Living 95 child welfare parental disablement and 48109

China eugenics in 9–1083 Christianity 59–6064 civil rights persons with disabilities and 193 Clare, Eli 79103 classi cation 102–3 feeble-mindedness or moronity 34–364144–45 cleanliness.  See purity cloning 73–7482 Cogdell, Christina 65 colonialism reproductive control and 2167–68 consciousness raising persons with disabilities and 939495–96107108 contagion 53–54 organism metaphors and 102 reproductive 52 See also purity cost-bene t determinations bioethics and 7879103–4 p. 132

COVID crisis

111

Crick, Francis 80 criminality eugenics and 16–18333961–62 persons with epilepsy and 39–41 CRISPR 818290 cure 47–489697 Darwin, Charles 15–1624–2540 Davenport, Charles 18–1925325557–586162 Deafness Bell-Gallaudet debate 43 eugenics and Deaf persons 41–44 degeneration 1630383940–4153–5461 See also race suicide dehumanization of persons with disabilities 11–12 The Descent of Man and Selection in Relation to Sex 16 disability rights movement 194–95 Dolmage, Jay 3447 Douglas, Mary 102–3 Down syndrome 35–3645–4698100–1 Dugdale, Richard 32–3355 dysgenic 353 Elizabethan Poor Laws 3 enhancement technology 6 ethical issues 7479–8081–8291 environmental reform.  See euthenics epigenetics 89 epilepsy 19–203139–41 Estreich, George 898

eugenic family studies 18–1933–345561 See also Jukes; See also Kallikaks eugenic marriage certi cates 205775 Eugenic Record O

ce 18–19273257–58

Eugenical News 58 eugenics de ned 2–5 in Germany 25–27 positive eugenics 617426473–7475–7682 euthanasia eugenics and 4–52128–2945–4660–61 See also T-4 euthanasia program euthenics 3251–5357–58 expressivism 8–999100 feeble-mindedness.  See moronity Ferguson, Paul 36–37 Fernald, Walter E. 3755 Fischer, Bernard 28 tter families contests.  See better baby contests Flexner, Abraham 5155 Folks, Homer 3755 “freak” shows 46102–3 Frick, Dr. William 27 Friendly Visiting Among the Poor 51 Galambos, Colleen 106 Gallaudet, Edward 43 Galton, Sir Francis 2–47n.21516 Gardner, William 81–82 Garland-Thomson, Rosemarie 98 Gattaca 14–15 genes 2–37n.232 genetics persons with disabilities and 92 research 80–8188–89 social work and 210–1384–88 genetic engineering 1614–1573–748190 Gibson, Margaret 5489–90 Gilman, Robbins 55–56 Goddard, Henry 18–1932–335556–57 Gould, Steven Jay 3440 Guyer, Michael 3639 Hamer, Fannie Lou 66–67 Hamilton, Alice 60 Harriman, Mary 57–58 heredity.  See also genetics eugenics and 34–5153031–3237–3849n.252 Himmler, Heinrich 1526–27 Hitler, Adolf 4–525–30102 Holmes, Oliver Wendell 36 p. 133

Human Betterment Association human genome project

65–66

bioethics and 8187 Humphrey, Seth 53 identity disablement and 8–9939495–96109 immigration restriction eugenics and 20–21505374 implicit bias 109 incentives or disincentives, reproductive.  See also cost/bene t determinations; See also social engineering nancial 2–34121668–7173–7475–7782–8490109 social 2–3473–7475–76109 infanticide 515214560–61 informed consent 7n.369–708490–91 institutionalization, eugenic 19–20212336–373840–4155–56576067–6871–7275 intellectual disability 192342–4344–4546566568–6971100–1103–4 See also moronity or feeblemindedness Intelligence.  See also intelligence (I.Q.) testing eugenics and 3–4437181103 race and 6671 intelligence (I.Q.) testing 1820–212432–33343671 intersectionality 4789–9095104n.2109 Jackson, Mark 19–20 Jarvenpa, Robert 33–34 Johnson, Alexander 56–57 Johnson, Harriet McBryde 103–4 The Journal of Heredity 66 Journal of Psycho-Asthenics 18 The “Juke” family 32–3355 See also eugenic family studies The Kallikak family 18–1932–33555661–62 See also eugenic family studies Kennedy, Angie 5759 Kite, Elizabeth 5661 Ladd-Taylor, Molly 23105 LaPan, Amy 54–5559 Laughlin, Harry 18–1925 least restrictive measures 93 See also normalization lebensborns 75–76 Leonard, Thomas 16–1724–25 Lombroso, Cesare 39–41 Longmore, Paul 94 Lorimar, Frank 58 Mackelprang, Romel 96106–7 Malthus, Thomas 315–16 Maranto, Gina 7379–80 marriage counseling 64 Maudsley, Henry 40 McWhorter, Ladelle 5066–67 Mein Kampf 2674–75 Meloni, Maurizio 89 Mencken, H.L. 68–69 Mendel, Gregor 7n.2151731–33

mental illness, persons with 47–48106–7109 eugenics and 35–38606168 meta-messages 8–13 Metzl, Jonathon 47 Metzler, Irina 30n.146 Middleton, Anna 96 Miller Paul 92 minority group model 27444886–8792–98107108 miscegenation eugenics and 22252833–3466–676889–90 missing link 46 p. 134

moronity or feeble-mindedness derivation of “moron,” 18 description of “feeble-mindedness,” 18 epilepsy and 39–41 eugenic family studies and 32–3361 as eugenic target 19–2022232430323334–3536373840–4144–455556–576089–90 German eugenics and 2728–29 immigrants and 20–21 insanity and 35–38 intelligence testing and 2433–3436 poverty and 37–38666768 sexual immorality 22–235861–62 social work and 57–61 motherhood 4863–7175–76 National Association of Social Workers 101165–66 National Conference of Charities and Corrections 5155 Native Americans 2133–3467–68 Nazi eugenics, the Holocaust and 28–2930n.365–66 “newgenics,” 76 Nielson, Kim 2143–44 Nordicism 255975–76 normalization 93 Norplant 6978–79 organism metaphor 26102 pain 98100–1 parental self-determination 1011747579–8084–8597–98100108 paternalism 222–23489699105–6109 Pauling, Linus 80 pharmacogenomics 87 Phillip Becker case 45–46 physician-assisted suicide 579 plant and animal breeding eugenics and 151626–2731–32 Plato 14–15 Platt, Tony 5459 Plecker, William 28 Popenoe, Paul 3641–425864 poverty

eugenics and 12–13243437–3857666869–708488–89 pre-existing conditions 78 pre-natal genetic testing or counseling 15–744–4570–7173–7476–7778–79808385–869098– 99100101103–4 pro-choice 999100 Project Prevention 69–70109 public health 20–2151–525360 purity eugenics and 53–546263–64 Purity and Danger 102–3 race eugenics and 2–3616222549n.2525965677172n.3 race hygiene 26102 race suicide 2–353–5458 Rafter, Nicole 33–3459 Raz, Aviad 7677 reason 103 Rehabilitation Act of 1973 94–95 religious metaphors 1659–60 restrictive marriage laws 20283857 Richmond, Mary 5157 right to risk 93 Roberts, Dorothy 677184 Roberts, Ed 95 Roosevelt, Theodore 24–2563 Sanger, Margaret 206474–75 Saxton, Martha 11–1299 Schild, Sylvia 85 Schoen, Johanna 226768 scienti c charity 50–51 Scotch, Richard 94–95 self-advocacy 94110 settlement houses 51–5253–5457–586272n.1 severity, disability 645101 sexual immorality 17465861–62 Sharp, Dr. Harry 22 Shildrick, Margrit 72n.2101–2 Shockley, William 68–69 sickle-cell anemia 70–718590 Singapore, social engineering in 83–84 Singer, Peter 46 social Darwinism 16–1757 social engineering 49–1012–1316–1776–77109 social model of disability 103 See also minority group model social purity movement 63–64 p. 135

Social Work and Genetics: A Guide for Practice social work code of ethics 1–2 social work education bioethics content and 85–8687

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disability content and 86–87106–9 Social Work Speaks 10–13 Sparrow, Robert 76–7779–80 speciesism 46 Spencer, Herbert 16–17 spread.  See contagion sterilization, involuntary eugenic movement and 19212224293840–415859–60 Nazi 4–525–2627–30 Progressives and 505255–57586065–71 reparation e orts 70 Stern, Alexandra Minna 7684–85 stigma 68454775–7678–798791n.2110 Stoddard, Lothrop 2538 su ering 100–2 supercrip 47–48 The Survey 56–57 T-4 euthanasia program 28 Taft, Jessie 3363 Tay-Sachs disease 8598 Telethons 48 temporarily able-bodied 97 Tracy Latimore case 45 Trent, James 46 trigger events 94 Tuskegee syphilis study 7090 unit trait theory 32 utopian essays, eugenics and 14–15 the Virginia Racial Integrity Act.  See miscegenation Washington, Harriet 90 welfare de ned 50 eugenics and 16 involuntary sterilization and 1966–69 social engineering and 12–1376–77 Wertz, Dorothy 78 White supremacy eugenics and 2124–25 Whitney, Leon 27 Wilmarth, Alfred 3139 Wolfensberger, Wolf 4593 Wright, Albert 17–18 wrongful life lawsuits 79