Racialized Bodies, Disabling Worlds: Storied Lives of Immigrant Muslim Women 0802095518, 9780802095510

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RACIALIZED BODIES, DISABLING WORLDS: STORIED LIVES OF IMMIGRANT MUSLIM WOMEN

In this book, Parin Dossa explores the lives of Canadian Muslim women who share their stories of social marginalization and disenfranchisement in a disabling world. Dossa shows how, being subject to social erasure in policy and research, these women define their identities and claim their humanity using the language of everyday life. The stories, she argues, are testimonial narratives that capture a collective situation of what it is like to be subject to compounded discrimination and racism, and how these can be addressed to create an enabling and inclusive environment. Based on narrative ethnography, this book makes a case for positive acknowledgment of perceived differences of nationality, religion, multiple abilities, and gendered identities. It offers a powerful argument for bridging two disparate bodies of work: disability studies and antiracist feminism. Most significantly, it shows how racialized Muslim women with disabilities are redefining the parameters of their social worlds and developing a distinctively pluralistic understanding of abilities. This ground-breaking work gives presence to the lives of people who are otherwise rendered socially invisible. parin dossa is a professor of anthropology at Simon Fraser University, Burnaby, British Columbia. She is the author of Politics and Poetics of Migration: Narratives of Iranian Women from the Diaspora (2004).

Mohamud 1947–1977

PARIN DOSSA

Racialized Bodies, Disabling Worlds: Storied Lives of Immigrant Muslim Women

UNIVERSITY OF TORONTO PRESS Toronto Buffalo London

© University of Toronto Press Incorporated 2009 Toronto Buffalo London www.utppublishing.com Printed in Canada ISBN 978-0-8020-9817-7 (cloth) ISBN 978-0-8020-9551-0 (paper)

Printed on acid-free paper

Library and Archives Canada Cataloguing in Publication Dossa, Parin, 1945– Racialized bodies, disabling worlds : storied lives of immigrant Muslim women / Parin Dossa. Includes bibliographical references and index. ISBN 978-0-8020-9817-7 (bound). – ISBN 978-0-8020-9551-0 (pbk). 1. Muslim women – Canada. 2. Women with disabilities – Canada. I. Title. HQ1170.D67 2009

305.48c6970971

C2008-906159-4

University of Toronto Press acknowledges the financial assistance to its publishing program of the Canada Council for the Arts and the Ontario Arts Council. University of Toronto Press acknowledges the financial support for its publishing activities of the Government of Canada through the Book Publishing Industry Development Program (BPIDP).

Bismi Llahi Al Rahmani Al Raheem In the Name of Allah, the Compassionate, the Merciful

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Contents

Acknowledgments Introduction

ix

3

1 Mapping the Methodology and Sociopolitical Contexts 2 The Difference of Disability

10

31

3 Narrative Moments from the Margins

64

4 Writing Dislocation: Telling Her-story 92 5 Women as Subject: Multi-voiced Narration

121

Conclusion: Alternative Spaces – Establishing Connections Notes

165

References Index

185

171

151

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Acknowledgments

Over the course of this research, I came to know many people whose support has been invaluable in the making of this book. My greatest thanks go to Mehrun, Tamiza, Firouzeh, and Sara. I am indebted to them for their kindness and generosity in sharing their experiences and memories in ways that have enriched this book and my life. I thank the women’s cohort, their family members, and their advocates for valuable insights. This work has benefited from the contribution of Poran Poregbal, my long-time research assistant and an activist in her own right. I acknowledge her support. Chapters of this book were presented at several conferences and forums. Thanks to respondents and discussants for their thoughtful questions and comments. I want to acknowledge the contributions of my colleagues and graduate students who raised challenging questions and freely shared their ideas. I am grateful to the anonymous reviewers of this book and the three journals where modified chapters of this book have been published: Journal of International Women’s Studies, Disability and Society [Routledge], and Social Science and Medicine. I thank them all. This research would have been difficult without the generous grants from Research on Immigration and Integration (Metropolis British Columbia), the Social Sciences and Humanities Research Council of Canada, and the University Publications Fund, Simon Fraser University. Virgil Duff and staff of the University of Toronto Press, Anne Laughlin, Kate Baltais, Wayne Herrington, and Ryan Van Huijstee, have been enthusiastic about this work and wonderful to work with. Thanks to Pat Feindel and Adrienne Wasik for their assistance with copy editing and formatting. Thank you to Fariyal Ross-Sheriff for her friendship and moral sup-

x Acknowledgments

port. I am grateful to Dr Muhammad Fadel Wardeh (Syria) for his assistance with the dedication. Khaled Al-Saai, artist and calligraphic painter, has been gracious and forthcoming. My deepest gratitude goes to Aziz. Without his love, support, and encouragement, this project would not have come to fruition. Thanks for believing in this project even more than I did. My children Fahreen and Zahwil have been a source of inspiration. They have encouraged me to continue with life’s journey, however long and arduous. Thank you to my siblings, Abdullah, Yasmin, and Shafik, for keeping alive Mohamud’s memory. This book is dedicated to Mohamud and to our mother, Nabat, who has taught us about the complex intertwining of the sorrows and joys of living (sukhr).

RACIALIZED BODIES, DISABLING WORLDS: STORIED LIVES OF IMMIGRANT MUSLIM WOMEN

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Introduction

In 1967 Canada opened its doors to immigrants from the non-Western world (Li 2003). This move freed the Canadian state from the overt racist policy integral to its history as a white settler society. The shift was informed by a number of developments. In the presence of the Universal Declaration of Human Rights (United Nations 1948), an immigration policy that restricted the entry of non-European populations was an embarrassment. Second, Canada needed to draw skilled labour from the developing world for its expanding industrial economy, especially when its conventional source of European labour was dwindling (Li 2003). Third, the presence of visible minorities helped to reduce the internal tension between the two ‘founding’ groups (the English and the French), for in Himani Bannerji’s words, a tension-ridden situation can be reduced by ‘an ideology that can mediate fissures and ruptures more deep and profound than those of the usual capitalistic nation state.’1 The central feature of the Canadian immigration policy is the point system that has helped Canada to secure a source of skilled labour and mask the racist and gendered biases embedded in its immigration policy. As Yasmeen Abu-Laban has argued, ‘while the adoption of the point system putatively introduces an objective, neutral test linked with seemingly value-free economic considerations, its criteria are not valuefree. The so-called indicators of worth are socially constructed and reflect the prevailing Canadian political and economic power structure’ (1998, 76). The geopolitical flow of migration is one way. People from the West generally have no desire to reside in countries of the South, except as privileged expatriates. The Canadian state recognizes that the needs of the market cannot be met indefinitely by immigrant workers, who are assumed to be males,

4 Racialized Bodies, Disabling Worlds

in the absence of their family members; Canadian immigration policy therefore has a Family Class category that allows immigrants to sponsor relatives, who they must then support for a period of ten years (McLaren and Black 2005). Premised on dependency, the category erases the contributions of sponsored immigrants, among whom the elderly and women loom large. The skills criterion therefore incorporates a gender bias by masking women’s double workload of waged work and housework (ibid.). Within this system, immigrants who have disabilities are shortchanged. The social invisibility of this group is a function of two interdependent factors: (1) Canadian immigration policy and (2) scholarship. In the immigration policy realm, persons with disabilities are excluded because they are erroneously perceived to be a drain on the social system. The policy does not articulate or acknowledge society’s role in disabling people. Admitting people who have disabilities is antithetical to the goal of admitting only those who, as Lorne Foster puts it, ‘can hit the ground running’ (1998). Second, the social invisibility of immigrants who have disabilities is reflected in scholarship. The growing literature on disabilities barely makes reference to the life situations of racialized persons. Karl Atkin and Yasmin Hussain submit that ‘despite its valuable and important role in asserting the rights of disabled people, the disability movement has been criticized for not recognizing diversity’ (2003, 162; see also Hussain 2005). My project for this book is to interrogate structures of exclusion and oppression by invoking the words and worlds of racialized women who have disabilities. I seek to demonstrate that people on the margins of society remake their world to affirm their agency and to avoid being perceived as helpless victims. Work such as mine calls for collaborative research, complicated by the power dynamics in the field, as explained by Diana Wolf (1996), for example.2 Researchers occupy a privileged status that can be deconstructed but not rectified without structural change. With this limitation in mind, I have adopted a position advocated by critical anthropologists and feminists globally, which is to recognize research participants as producers of context-specific knowledge. In addition to closely reading ethnographic material, I have sought to include broader sociopolitical contexts for further elucidation, providing ‘generous contextualization,’ as Sherene Razack (1998) calls it. My goal is to bring to the fore issues of social justice and equality raised by and called for by research with marginalized populations (see, e.g., Collins 2000; Dossa 2004; Naples and Desai 2002; Ong 1995a).

Introduction 5

Integrating two bodies of data – data on agency and data on structure – provides poignancy and depth.3 Exploration of this interface helps us to see our participants as part of the body politic, in a space from which they critique the system and suggest alternatives for a just society. This approach provides a localized understanding of structural factors as they become embedded in people’s everyday lives. This is the principle that has guided my work. In their everyday lives, persons with disabilities are given the societal message that they are lesser human beings (Albrecht 1992; Ingstad and Whyte 2007). Both the violation of the rights of individuals who have disabilities and their initiatives to work towards social justice have inspired my research. My work aims to show that race and gender matter and that these social markers of difference cannot be dismissed under the seemingly neutral category of disability, the reference point for which is young white males (Fine and Asch 1988; Wendell 1996). Persons from marginalized social locations bring into relief the fault lines of the system and suggest avenues for change. What they have to say both in the way of experiential knowledge and subsequent reflection – embedded in storytelling – is of value to the larger society. As Veena Das and Deborah Poole (2004) argue, margins engage with the centre and in the process shift its pivotal points. My data are derived from women in two communities in metropolitan Vancouver: South Asian Muslims from East Africa (hereafter South Asians) and Iranian Muslims.4 Through their individual stories and testimonials I acquired an in-depth understanding of my key research question: What is it like to have a racialized body in a disabling world? This question must be considered in light of the evidence that, as David Mitchell and Sharon Snyder observe, disability and race are considered ‘as mutual projects of human exclusion, based upon scientific management systems, successively developed within modernity’ (2003, 843). Mitchell and Snyder point out the horrific effects of the congruence of race and human ‘defects’ and how this ‘has become the focal point of European and American efforts to engineer a “healthy” body politic’ (ibid., 844). Exclusion and the social erasure of racialized individuals with disabilities have compromised their humanity, and, hence, the widely heard advocacy term: ‘We are but human.’ Stories restore our humanity because they provide flesh to what may otherwise remain abstract (Jackson 2006). The participants in this study carry out this task of reconstituting personhood through speaking about their struggles, aspirations, and accomplishments. I have made an informed choice to

6 Racialized Bodies, Disabling Worlds

present each woman’s account in the same order in which she told it – this way, the content of storytelling does not lose its political edge (Dossa 2004). People on the margins often resort to storytelling, and storytelling is a social act, even if ‘stories may concern events that seemed to have singled a person out, isolated and privatized his or her experience’ (Jackson 2006, 103). Stories are related to an assumed, listening audience. The researcher can play a role to open up the story to others. ‘But without stories, without listening to one another’s stories, there can be no recovery of the social, no overcoming of our separateness, no discovery of common ground or common cause. Nor can the subjective be made social’ (ibid., 104–5). The stories presented in this book are woven into each other. An issue raised in one text is taken up in another for the construction of the larger and more politicized picture. For the women in this study, the starting point of their journeys is Canadian immigration policy, which has excluded them as potential immigrants. Because of this, racialized women, and men, who have disabilities do not constitute part of the Canadian landscape. They remain unnoticed on multiple fronts: in the social services and health care sectors, in research, and in the general populace. The premise at the root of this exclusion is that racialized persons who have disabilities cannot meet the labour skills criterion of the immigration policy; they are seen to be an anomaly. No value is attached to their desire to undertake waged work; instead, they are cast as a population that consumes public services and therefore a drain on the system. Such harsh categorization further dehumanizes racialized persons who have disabilities in a context where disability as a condition is already subject to stigma. Faced with this double and triple vulnerability, the women in this study take it upon themselves to define their identities and claim the humanity denied them in their everyday lives. This is social justice work. The women in this study speak in a testimonial voice, fully aware that their stories are links in a chain made up of many stories, each with its thread woven into the larger tapestry in the making. Furthermore, the women in this study do not refer to gender, race, and disability in exclusive terms. With varying emphasis, they interconnect these markers of difference in their lived realities. They are keen to ensure that their activist work, defined in their own terms, does not remain within the discrete spaces of their communities. They speak to advance the

Introduction 7

cause of a just society. In their narratives, the women identify the fault lines, gaps, and ambiguities in the dominant system. But they also talk about alterity and how this can bring about progressive change. Below, I present a summary of the social locations from which these women carry out their work. Mehrun’s story is the focus of Chapter 2. As an activist, Mehrun focuses on assisting persons with disabilities to move out of institutional settings, thereby building a critical mass of bodies in the community. Her efforts are informed by her own experience of being hospitalized – without being sick – and by the need to claim her rights as a human being. Mehrun sees her rights as interwoven with those of her peers, regardless of gender and race. Chapter 3 features Tamiza’s story. To secure social services for her children, Tamiza, in effect, advances a model of citizenship entitlement, reversing the conventional service model of charity. Tamiza speaks to multiple audiences: social services providers, co-workers, community members, and the public at large. Chapter 4 presents Firouzeh’s story. Firouzeh seeks to claim her identity as a person, rather than as someone defined exclusively by the label ‘disability.’ Her work of reclaiming her multiple identities as a mother, wife, homemaker, volunteer, and student transmits an important social message: women who have disabilities live in an interdependent and intersubjective world, subverting the script of dependence ascribed to women with disabilities. In Chapter 5, Sara’s story exposes the intricate relationship between voice and experiencedbased knowledge. Cast as an ‘undeserving immigrant’ whose story is not valorized, Sara resorts to multi-voicing to deliver the message that people on the margins have a lot to say, and what they have to say is of value. The terms ‘critical mass of bodies,’ ‘entitlement,’ ‘identities,’ and ‘multi-voicing’ show these women’s engagement with larger social issues of theoretical and practical import. Each woman conveys her struggle for equality and social justice in storied conversation with others. Stories contain ideas that are ‘communally wrought, not privately owned’ (Mohanty 2003, 1). The women’s vision for a just world is derived from the lived realities and events of their everyday lives. Their stories support the principle that ‘everyday feminist practices are as important as larger organized political movements’ (ibid., 4). In the conclusion, I discuss how the women in this study retrieve their voices and work towards creating an alternative space to foster

8 Racialized Bodies, Disabling Worlds

social relationships. Their understanding of their identities as Muslims in the diaspora provides an entry point for exploring the concern expressed by disability and antiracist feminists: persons with disabilities are human and are subjects in their own right. I have tried to pay close attention to the words and worlds of the women participants in this study, and at the same time I have attempted to identify the larger context invoked by the content of their narratives. It is no mean task to maintain a balance between the individual voice and broader analysis. We often use narrative data (participants’ lived reality) as raw material and resort to disciplinary frameworks for theoretical insights; but this does not have to be the case (Scheper-Hughes 1992; Ong 1995a, 1995b). We can recognize women as producers of context-specific knowledge, paying attention to the complex ways in which they speak. The task involves not only hearing what they have to say, but taking note of how they bring larger societal concerns to the fore in subtle and less subtle ways. The women bring forth their embodied, experiential knowledge of what it is like to be discriminated in a disabling world. They show how this world can be transformed into an enabling environment that is inclusive, where people can develop their potential as active citizens. The more we enter into the marginalized recesses of our society, the sharper is our understanding of the fault lines of the system and how these can be addressed. Disenfranchised people do not speak from faraway discrete spaces. What they have to say concerns society as a whole. Mehrun’s work to ensure the presence of a critical mass of people living in communities and Tamiza’s work on citizenship entitlement are societal issues. Firouzeh’s script on multiple identities, as opposed to an essentialized label of disability, and Sara’s use of narrative strategies (multiple-voicing) suggest social justice work carried out within the nooks and crannies of everyday life.5 These narratives reveal the women’s desire to take their place in Canadian society in a way that positively acknowledges their differences of nationality, abilities, and gendered and race-based identities. The realization of this goal calls for the re-visioning of our social world: this is the mammoth task that the women pursue contextually and on the basis of their knowledge from the margins of society. From their special entry points into the dominant system, they see, hear, and question what others take as given reality (Collins 2000; Das and Poole 2004). Disenfranchised women, and men, understand too well the need to speak in a collective voice, an endeavour that is informed by shared tra-

Introduction 9

jectories of life and a shared history of oppression (Mohanty 2003). The stories that appear in the pages of this book are testimonials that capture the situations of persons occupying multiple social locations – rather than being an end point, let this book be read as the opening of a dialogue on a just society.

1 Mapping the Methodology and Sociopolitical Contexts

Fieldwork is rarely a discrete activity separated from the currents of social and political life. It therefore requires the delineation of particular contexts that throw light on events in the field and the stories shared by participants. To this end, I have divided this chapter into three sections. First, following a discussion of the methodology, I identify the social locations of the South Asian and Iranian communities respectively. In the second section, I examine the policy context of disability, asking why the paradigm shift from a charity to a human rights or entitlement model has occurred unevenly and why the substantive exclusion of people who have disabilities continues, compounded by gender and race. In the third section, I present the theoretical framework that has guided my study. I show how storytelling, complemented by the life course perspective, brings home the experiential everyday realities of the participants. Methodology I might not have met the participants in this study were it not for my ethnographic research on the health and well-being of women from the South Asian and Iranian communities, conducted in the periods April 1991 to August 2001 and April 2003 to August 2004. Networking in the two communities in metropolitan Vancouver enabled me to conduct narrative interviews with six Iranian and seven South Asian women, as well as two mothers of children who have disabilities. These women had come to Canada as refugees, and two had migrated as a result of family sponsorship. The rest became disabled only after migrating to

Methodology and Sociopolitical Contexts

11

Canada. All the women, including the mothers, were between 35 and 50 years old, and they had been living in Canada for between four and thirty years. In the tenor of narrative ethnography, my research schedule included storytelling as well as in-depth interviewing, chosen because of the capacity of these methods to reveal women’s experiences as they are informed by sociopolitical and economic factors. As well as having informal conversations with them at community gatherings, I interviewed the participants in this study two to four times in their homes or in cafeterias. I interviewed South Asian women in Gujerati and in English; a research assistant helped with interviews of Iranian women in Farsi. The medium of communication was determined by historical factors. Although Kenya, Uganda, and Tanzania were subject to British colonial rule, this was not the case with Iran; hence, English is one of the primary languages in the former territories, while Farsi is the official language in Iran. In addition, my voluntary work with both communities – for a South Asian Muslim advocacy group, from January to December 2000, and an English as a second language (ESL) program for Iranians, from June to December 2003 – helped me gain valuable insights. My narrative interview schedule included topics such as pre-migration experiences, migration, and resettlement; everyday life; familial and community ties; social networks; housing; job opportunities; and access to social services and health care. The interview data were translated, when necessary, and transcribed. I made a file for each participant, summarizing stories and identifying major themes and subthemes, also drawing from my journal entries and field notes.1 Upon completion of my field research, I reviewed the transcripts with all of the participants by personally presenting summaries, and I invited feedback and comments on the accuracy of the data. Their comments have been included in the body of this work. All of the participants in this study have granted consent to have their stories published. Although unique, each woman’s story resonates with those of her peers. Their stories constitute testimonials that speak to the larger issues of displacement, migration, resettlement, and the formation of new subjectivities. Although telling individual stories, the women speak in a collective voice, evident in the switches they make from ‘I’ to ‘you’ to ‘we’ and to ‘us.’ This genre of speaking reflects their need to work for a common cause. The women are aware that their stories form part of a

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chain of experiences shared by their cohort. This realization is what made me focus on the stories of four women. Although I did not rule out the option of including the stories of all the women, I concluded, after careful consideration, that there was greater merit in focusing on a few individual stories. I wanted to recognize women as authors of their texts to the extent that this was possible, and I felt that their struggles and their attempts to remake their worlds would be accentuated through individual stories – testimonials in their own right. This account would be incomplete if I did not include two scripts closer to home. Mohamud My younger sibling Mohamud was diagnosed as ‘developmentally disabled’ at the tender age of 3 years. At the time of his birth in Kampala, Uganda, in 1947, there were no services in place. ‘Special needs’ children were not the focus of attention in colonized Uganda. Priority was given to production; the goal of the colonial power was to extract export-based crops – mainly tea and coffee, which impoverished the country. The lack of educational programs meant that Mohamud spent a good part of his life at home while his ‘able-bodied’ peers attended school. To prevent him from wandering outside the house, unnoticed, he was sent to Butabika, a psychiatric hospital, five miles from our home. At the age of 23, Mohamud’s confinement was made ‘permanent’ when the whole family departed during the 1972 Asian exodus, leaving him behind. My parents sought to sponsor Mohamud’s immigration to Britain, our new home. The application was rejected on the basis of a British psychiatrist’s report stating that Mohamud was better off in the hospital than with his family. The psychiatrist may have internalized the norm that racialized individuals who have disabilities would be a drain on the system, even if they were British subjects. Mohamud died at the age of 30. It took three months for news of his death to reach my parents, as the letter was sent by sea mail. He had choked on a banana skin. The Centre My first sustained encounter with individuals who have disabilities occurred during my professional work with a vocational centre in Alberta, Canada. Over a period of twenty-one months (1986–8), I observed a phenomenon that is not uncommon: the centre’s mandate to

Methodology and Sociopolitical Contexts

13

advance the interests of its participants was overshadowed by the agenda of the funding agency (the state in this case) to secure jobs for able-bodied individuals while managing and monitoring the bodies of people who have disabilities. This dual agenda was revealed at various levels. White, able-bodied, middle-class personnel occupied managerial positions, and people from other walks of life, including lower-class and racialized minorities, undertook the front-line, day-to-day work of the centre. The personnel were considered to be ‘the experts’ on disability issues, while people who have disabilities were considered to be ‘the clients.’ Participants who were deemed to be capable of work – defined according to the market-based criterion of ‘productivity’ – were placed in the lowest echelons of the labour market, where they were subject to extreme exploitation. They were paid $1 to $3.50 an hour, on the ground that they were trainees. Gary Albrecht has argued that, in the Western world, disability has become a business that employs non-disabled people to look after the affairs of ‘underemployed/non-employable’ individuals who have disabilities. Rendered consumers, people who have disabilities are subjected to normalizing technologies of power. For example, ‘medical professionals tend to define disability in terms of organically based impairments; such terms incorrectly locate the problems of disability entirely within the individual’ (1992, 21). When I came to Vancouver in 1991, I thought I had left behind the centre and the people who used its facilities, but not for long. Its contradictory and conflicting functions continued to trouble me. While the centre served as a place of activity for participants who were otherwise confined to their segregated group homes, it did not effect any fundamental transformation. Even when there was a change of terminology from ‘clients’ to ‘consumers,’ the centre’s top-down approach remained in place, evident in the dichotomy it maintained between ‘Us’ and ‘Them.’ Furthermore, the generic category of disability used by the centre failed to address the specific impacts of race and gender. This cried out for further analysis. How do we render social visibility to people who are otherwise dehumanized? I argue that this task is undertaken first and foremost by the participants themselves, through stories that they author, using strategies that they choose to use. Diasporic Communities2 South Asian and Iranian Muslims occupy different social locations in their new homeland in Canada. The migration of each group was trig-

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gered by political events, namely, the 1972 eviction of Ugandan Asians by President Idi Amin and the 1978–9 Iranian Revolution. However, despite the short span between the two migrations, different factors were at work for each group. Ugandan Asians, followed by others from Kenya and Tanzania, were relatively well received, as their arrival coincided with an economic boom coupled with a demand for immigrant labour (Dossa 1988, 1989; Fernando 1979; Lalani 1997). In contrast, the arrival of the Iranians occurred at a time when Canada was experiencing a downward economic turn (Der-Martirosian 2008; Dossa 2004; Mirfakhraie 1999), which was accompanied by economic restructuring and downsizing of the social services sector. South Asians and Iranians, like their counterparts in the United States, brought with them to Canada ‘transferability of [their] skills to the country of destination’ (Der-Martirosian 2008, 3). Their communities form part of the growing Muslim diaspora in Western metropolises. Muslims form 2 per cent of the total population of Canada: ‘In 1991, there were 253,300 Muslims in Canada. Within only a decade this population had grown by 128.9 per cent’ (Rahnema 2006, 24). South Asian Muslims comprise 212,000 individuals in Canada, and Iranians number 92,020 (2006 census); in British Columbia, the site of my study, there are close to 22,000 East African South Asians (referred to as South Asians in this study) and 27,750 Iranians (ibid.). At its core, diaspora is shaped by political rather than cultural sensibilities. Haideh Moghissi argues that diasporic communities construct their identities in accordance with their reception in the host society and that, therefore, the formation of ‘a collective identity, or diasporic consciousness and solidarity, is more often a response to an inhospitable climate in the host societies than an expression of cultural nostalgia’ (2006, xv). Ancestral cultural values, traditions, and practices are not rendered irrelevant but are reworked and reinterpreted in relation to the sociopolitical climate in the diaspora. The regeneration of Islam in the West can be understood as an ideology of resistance, given ‘deepening inequalities and a continuing, virulent racism’ (ibid., xvi; see also McDonough 2000). The point that diaspora is ‘a political reaction to new realities rather than simply a reflection of an ancestral cultural heritage’ (Moghissi 2006, xvii) is relevant to this study’s participants. These women’s reinterpretation of Islam as a religion and a culture does not take place exclusively in the context of their communities. Faced with social exclusion, these women draw on their diasporic identities to engage with the

Methodology and Sociopolitical Contexts

15

larger society, and address the question of what it is like to be a racialized Muslim woman with a disability. I address this question in each of the chapters with the caveat that none of the women spoke extensively about her Muslim identity. I suggest that their muted and low-key reference to this subject is a function of the denigration of Islam in the West. Yet, it was evident that Islam was present in their lives and informed their work on social justice. These women’s small but steady steps can be appreciated in the light of Afsaneh Hojabri’s observation that ‘indeed, as reported by the Canadian Council of Refugees (2004), the degree to which people of Muslim and Arab origin are feeling the destructive impacts in their daily lives of openly discriminatory practices and distorted media images is unprecedented in Canada’ (2006, 220). When gender and disability are added to this framework, the impact of compounded social exclusions is considerable. Women’s efforts to reconstruct their lives may be understood in the context of Komatra Cheungsatiansup’s argument that marginal groups ‘invent and circulate counterdiscourses to formulate oppositional interpretations of their identities, interests and needs’ (2001, 63). Policy makers and social services organizations have imposed homogeneous identities on Muslim communities by failing to take into account differences in gender, age, ability, intergenerational relations, and history. The result is that the needs and aspirations of subgroups are overlooked. Furthermore, groups made homogeneous become easy targets of racism (Jiwani 2006; Lee and Lutz 2005; Thobani 2007; Zaman 2006). Religion is an important difference that has not been positively viewed in light of the demonization of Islam (Bagguley and Hussain 2005). As Chris Allen has expressed it, ‘while traditional markers of race have been afforded legislative protection, the same is not true for religious markers ...’ and ‘[de]spite Muslims being increasingly targeted with newer forms of racist prejudice and hatred, as multi-ethnic communities they remain outside the writ of current legislation’ (2005, 4; see also Modood 1997; Moghissi 2006). The construction of Islam as the counter-image of the West puts Muslims in a situation where they ‘find themselves misunderstood, depicted as “Other,” with an alien value system and customs incompatible with those commonly accepted in the west’ (McGown 1999, viii; also see Modood 2005a, 2005b). Canadian Muslims, however, have not remained passive. A heterogeneous group comprising differences of gender, ethnicity, nationality, socioeconomic status, and religious affiliation, Canadian Muslims have

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created diasporic communities and claimed their identities and rights as citizens of a nation-state and of the umma, the global Islamic community (McCloud 2006; McGown 1999; Moghissi 2006). I argue that the stories of disenfranchised people, complemented by a life course perspective, capture the dynamic process of critiquing and reimagining the system.3 Before expounding on this point, I present a brief review of disability studies and explore possibilities for an inclusive policy framework. Disability Studies and Policies Until the 1960s and 1970s, disability was conceptualized as individual pathology to be remedied through medical intervention. Considered to be ‘aberrant or abnormal,’ disability was viewed to be a condition that could ‘be prevented or ameliorated through biomedical, medical or genetic intervention by suitably skilled and qualified professionals’ (Rioux and Samson 2006, 112). The biomedical model was paramount when considering people who have disabilities: ‘In its harshest form, the biomedical model treated people who have disabilities as inferior; in its kinder form, it treated them as helpless victims requiring care and protection’ (ibid., 113). Even when a functional dimension was introduced for the acquisition of life skills and training, the medical model remained intact. The onus fell on individuals who have disabilities to live as ‘normally’ as possible. Mairian Corker and Sally French (1999) submit that the discourse on medical deficiency led us to focus on processes and contexts that construct people who have disabilities as the Other. They make the important point that disability should not be perceived as universal, static, and unchanging. Disablism is an enacted social phenomenon. Moreover, the association of disability with pathology became the rationale for the institutionalization of individuals with disabilities. In the 1960s, when civil rights movements were gaining ground, people who have disabilities and their advocates began to challenge the individual pathology model. They argued that ‘disability is not inherent in the individual but rather a function of social and economic conditions within society’ (Rioux and Samson 2006, 114; see also Cossette and Duclos 2002; Prince 2006). This paradigmatic shift generated a new discourse that views people who have disabilities as citizens with a right to participate fully in the social life of their communities. The actions required to remedy inequality were ‘considered a public responsibility,

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since the characteristics associated with disability are interpreted as normal occurrences within the range of human diversity and difference, rather than as deviant anomalies’ (Rioux and Samson 2006, 114). Activists popularized the human rights model, which perceives variations as part of the human condition. They distinguished between the politics of distribution, with its emphasis on access to resources and barrier-free environments, and the politics of recognition, which foregrounds citizenship rights and equality. Although a latecomer, the United Nations has helped to advance the cause of people who have disabilities on a global scale. The U.N. General Assembly passed two resolutions, accordingly: the Declaration on the Rights of Mentally Retarded Persons (United Nations 1971) and the Declaration on the Rights of Disabled Persons (United Nations 1975). These early declarations, however, were grounded in the biomedical model, ‘viewing people who have disabilities principally as people with medical problems, dependent on social security and welfare and in need of segregated services and institutions’ (Rioux and Samson 2006, 117; see also Canada, Federal Task Force on Disability Issues 1996). Subsequent U.N. resolutions moved closer to the human rights model – also referred to as the social model – with a focus on the disabling world. One such effort was the U.N.’s Declaration of the International Year for Disabled Persons (United Nations 1981) for the implementation of the World Program of Action (Rioux and Samson 2006, 118). With its emphasis on legislation and state policy, the World Program called upon nation-states to eliminate barriers to the full and equal participation of all citizens. The U.N.’s ongoing endorsement of this advocacy work is reflected in the General Assembly’s introduction of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (United Nations 1993); a guideline for policy development, this document reinforced the need to globally advance the human rights of people who have disabilities. This momentum has been sustained. Since the early 1990s, the U.N. Commission on Human Rights (CHR) has adopted annual resolutions, and each one has ‘included more provisions and used stronger language than the last to recognize both the rights of people who have disabilities and the U.N.’s role in the protection and promotion of those rights’ (Rioux and Samson 2006, 122). In 2007 the CHR adopted a Convention on the Rights of Persons with Disabilities (United Nations Commission on Human Rights 2007). Signed by over forty-four member states, its goal is to advance the human rights of people who have disabilities. Rioux and Samson find that these resolutions have

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had an impact, as evidenced by ‘a wave of changes in law and policy’ (2006, 127), due to international recognition that people who have disabilities are disadvantaged by societal norms, attitudes, and practices. ‘The past decade has also seen the development of national disability policies on an unprecedented scale. A considerable number of countries throughout the world have now adopted national policies on disability consistent with the guidelines provided by the Standard Rules’ (ibid., 129).4 Documentary construction of reality, Dorothy Smith (1999) reminds us, is not without shortcomings and challenges. Policy and legislation do not translate into practice as a matter of course. Political will and the availability of resources are determining factors. Furthermore, resolutions and declarations of rights tend to assume that the target constituency is homogeneous, but this is far from the case. While nation-states are expected to implement and reverse discriminatory practices, in most cases, their populations are heterogeneous in terms of race, gender, class, religion, language, age, and so on. Especially problematic is the fact that different constituencies are measured by a yardstick that serves the interests of the few. In the West, young, middle-class, white, and able-bodied males constitute the ideal norm. Differences such as gender, race, and social class among people who have disabilities are subsumed under the master category of disability; hence, women and racialized women who have disabilities do not appear as categories, let alone subjects. In surveys like Disability in Canada: A 2001 Profile (HRDC 2003); Equal Citizenship for Canadians with Disabilities: The Will to Act (Canada 1996); In Unison: A Canadian Approach to Disability Issues – A Vision Paper (Canada 1998); and Advancing the Inclusion of Persons with Disabilities: A Government of Canada Report (3rd and 4th eds., Canada 2005 and 2006) there is no mention of racialized women who have disabilities as a category or subject of discussion. Moreover, communication between institutions, from international to national to regional bodies, has led to the development of a top-down approach that does not address the lived realities of people. No system of dominance, however, has a totalizing reach over its diverse populations. This is especially the case with people on the margins of society. Faced with a system that does not accommodate or address their needs and aspirations, people on the margins of society seek out multiple ways to survive within, in between, and outside the system. In the process, they return the gaze (Bannerji 1993) and categorize back (Malkki 1995). Their points of intervention may be observed in

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the many ways they rebuild their worlds (Das et al. 2001). At the same time, people on the margins of society critique the system and suggest avenues for change, conceptual and otherwise. Below I explore the complex relationship between structural exclusion and human agency with reference to two interrelated issues in disability studies – the gender gap and multiple markers of difference; this is also referred to as the intersectionality paradigm of antiracist feminism (Jiwani 2006). The Gender Gap The literature on feminism and disability has critiqued the neglect of women who have disabilities in feminist as well as in disability studies. In their pioneering work, entitled Women and Disabilities: Essays on Psychology, Culture and Politics, Adrienne Fine and Michelle Asch argue that disability activists have constructed disability ‘as a unitary concept and have taken it to be not merely the “master” status but apparently the exclusive status for disabled people’ (1988, 3).5 Feminist activists (Stubblefield 2007; Zitzelsberger 2005) cite two reasons for the omission of gender. Historically, it was males who were wounded in war or at work; hence, they received rehabilitative care. Second, Fine and Asch submit (see also Garland-Thomson’s review, 2005): ‘Feminist anthologies, including key works that mindfully integrate racial and minority group concerns with gender analysis, continue to exclude women who have disabilities’ (1988, 4). Disability disadvantages women more than it disadvantages men. Society requires women to be nurturing, attractive, and sexual. Women who have disabilities have less opportunity for education and work, and fewer chances of marriage compared with men. Institutional structures, legislation (or the lack of it), and social attitudes seem to have conspired against women who have disabilities. This situation affects racialized women who have disabilities most intensely (see, e.g., Ali et al. 2001; Atkin and Hussain 2003; Islam 2008). Having internalized the socially constructed equation that disability equals dependency, non-disabled feminists tend to exclude women who have disabilities in their scholarship and activist work. Fine and Asch maintain that ‘the conviction that disabled people are inevitably burdensome and that women will be so burdened accounts for feminist resistance to involvement in the disability rights movement’ (1988, 4; also see Asch 2001; Lloyd 1992). Fine and Asch state that it is their goal to integrate gender into disability scholarship, ‘the latter into feminist

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thought, and both into the mainstream of social science. Beyond this, we demand attention to the lives and experiences of women who have disabilities, be it on the streets, at work, in bed, in maternity wards, at feminist rallies, within the ranks of the disability rights movement, or across progressive grass-roots movements’ (1988, 31). Being conscious of their social erasure on multiple fronts, including in disability and feminist literature, women who have disabilities and their advocates have formed grassroots coalitions within and across nations. Their aim is to secure for women who have disabilities rights to education, employment, social support, and community life, and to have these rights secured with dignity and respect. The DisAbled Women’s Network Canada (DAWN-RAFH) is a notable example of such a grassroots organization. Established in 1985, this largely selffunded organization is working to create an enabling world for women who have disabilities. Women who have disabilities face multiple barriers – systemic, institutional, environmental, and attitudinal – the combined effect of which is the violation of their human rights. Status of Women Canada, together with the Roeher Institute, reports that ‘because women who have disabilities confront systemic sexism, they are further marginalized than men who have disabilities. Women who have disabilities are more likely to live in poverty, to have less access to equitable employment and to education’ (2001, 12). Founded in 1993, the Ethno-Racial People with Disabilities Coalition of Ontario (ERDCO) seeks to ameliorate the health-related concerns of racialized women who have disabilities. ERDCO’s mission statement reads as follows:6 ‘ERDCO is philosophically committed to working within an anti-racist framework and in the belief that all people who have disabilities deserve to be respected, to live with dignity and be full participating members of society. To this end ERDCO is committed to promoting respect for ethno-racial people who have disabilities. Today, ERDCO has an active membership of over 200 people, including women, children, youth, seniors, single parents and parents of children who have disabilities. ERDCO represents ethno-racial people who have disabilities of all ages, racial, cultural, linguistic and religious backgrounds’ (1996, 2). Multiple and intertwined barriers, including the violence of racism, have been identified; yet, the concerns of racialized women have not been addressed systemically across Canada.7 A major barrier is lack of funding.

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Multiple Markers of Difference Although activists have taken up the issues of gender and disability in disability and feminist studies, respectively, the subject of race remains unaddressed. The inclusion of marginalized and vulnerable groups in mainstream organizations and scholarship is not a matter of add and stir. Towards this end, Joanna De Groot has identified three levels: first, recuperation, ‘in which issues, persons and materials which have been largely hidden, marginalized or overlooked are now being studied and analyzed’ (1996, 30); second, redefinition, which calls for reconceptualization and valorization of home-based work; third, transformation, to move away from age-old boundaries such as Us and the Other (ibid.).8 To reverse gender-blind scholarship, Henrietta Moore (1988) proposes cross-disciplinary dialogue. In her book, Feminism and Anthropology, she argues that gender-blind scholarship can draw from anthropological insights on difference, while cross-disciplinary dialogue can incorporate gender to correct its conceptual omission in ethnographic texts. Moore captures this configuration in relation to race, class, and gender. She suggests that we should look at ‘how racial difference is constructed through gender, how racism divides gender identity and experience, and how class is shaped by gender and race’ (ibid., 11). Moreover, we must ‘look at the complex ways in which gender, race and class intersect and cross-cut each other, as well as the way in which all three intersect with colonialism, the international division of labour and the rise of the modern state’ (ibid., 10; see also Hillyer 1993; Kittay 2001). With respect to Canada, antiracist feminists (Bannerji 1995, 2000; Dua 1999; Jiwani 2006; Lee and Lutz 2005; Razack 1998; Thobani 2007) have advanced the project of deconstructing and interrogating race and racism. In Thinking Through: Essays on Feminisim, Marxism, and Anti-Racism, Himani Bannerji foregrounds ‘common sense’ racism, ‘which holds the norms and forms thrown up by a few hundred years of pillage, extermination, slavery, colonization and neo-colonization. It is in these more diffused normalized sets of assumptions, knowledge, and so-called cultural practices that we come across racism in its most powerful, because pervasive, form’ (1995, 45). Sherene Razack, in Looking White People in the Eye: Gender, Race and Culture in Courtroom and Classrooms (1998), suggests that we look at history, and particularly at Canada’s white settler society, to understand the structural exclusion of racialized minorities. In her book, entitled Discourse of Denial: Mediations of Race, Gender, and Violence (2006), Yasmin Jiwani, draws our attention to the role of the

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media in perpetuating this process of exclusion. Habiba Zaman demonstrates, in Breaking the Iron Wall: Decommodification and Immigrant Women’s Labor in Canada (2006), that recent developments such as global capitalism have not helped the situation of racialized minorities, especially women; nor has the war on terror, as pointed out by Sunera Thobani, in Exalted Subjects: Studies in the Making of Race and Nation in Canada (2007). The authors mentioned above observe that racism does not function in isolation from other social forces. They bring to the fore the paradigm of intersectionality to show how differences of religion, age, social class, sexual orientation, and disability accentuate racism, which is to be understood contextually and as a process. Introducing the term ‘racist sexism,’ Bannerji shows how racist sexism is fostered in a society that is ‘historically connected to colonialism and slavery, and presently to an imperialist form of capital’ (1995, 127). If we add disability to this schema, we can see how multiple markers of difference exacerbate the situation of women for two reasons. (1) Women occupy a subordinate position in our society, and therefore (2) additional markers of difference are ‘transformed into hierarchies and get built into institutional structures, legitimizing inequalities among different groups of women’ (Guruge and Khanlou 2004, 2). The discussion here would benefit from a note on neoliberal restructuring.9 We have observed that the ideology of liberalism has not advanced the interests of people who do not fit the criteria of young, able-bodied males, perceived as productive members of society, and indeed excludes all those who do not meet these ideal criteria. Eva Kittay (2001), for example, takes exception to the neoliberal fixation on intellect, independence, and productivity, all of which dehumanize those who cannot meet these criteria. As the mother of a developmentally disabled daughter, Kittay argues that these ‘values throw into question her [daughter’s] entitlement to the resources she needs for her full development and flourishing’ (2001, 560). She suggests that we take seriously our capacity to be in relationships to other people; otherwise we lessen ourselves as people. The care of dependents, Kittay argues, must be considered the moral responsibility of a decent society. Dependents must not be perceived as charitable cases. Disability must be seen as part of the human condition (Gadacz 1994). Neoliberal restructuring is not a short-term strategy. It has profoundly restructured our cultural, political, and social lives. At its core

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is the notion of a ‘citizen worker’ who must take his or her position in the market economy, regardless of exploitative work conditions (Wasik 2005). The gender implications of this shift are noteworthy. Janine Brodie puts it this way: ‘Feminist academics and women’s organizations have linked restructuring to the intensification and feminization of poverty, especially among single women and elderly women. They also point out that women, whether as clients or as state workers, have been disproportionately affected by ever-growing cuts to social welfare spending and by the reduction of the public sector’ (1996, 8). Of interest is the strategy of targeting in a two-tiered structure of citizenship. First is the new good citizen ‘who recognizes the limits and liabilities of state provision and embraces the obligation to work longer and harder in order to become more self-reliant’ (ibid., 19); and second is the ‘special claims citizen’ whose entitlement to service provision requires medical documentation and assessment (ibid.). Such a focus pathologizes difference, as opposed to delineating structural and systemic oppression. Ultimately, targeted constituencies are administered to and statistically constructed by the system for therapeutic intervention to produce manageable bodies. Brodie argues that there is the perception that ‘“special interest groups” do not speak for the “ordinary Canadian” but, instead, demand privileges that are unearned and violate the new norms of citizenship. The designation “special” is rapidly being cast over integral elements of our political community – people of colour, the working class, immigrant groups, lesbians and gays, the poor, and the First Nations [to which could be added, and people who have disabilities]. This designation effectively excludes them from the mythical “ideal” political community of ordinary citizens and suggests that their demands for inclusion and equality are somehow outside or antagonistic to the general interest. It [the state] asks us to be silent about the very social designations that prevent, and will continue to prevent, our full inclusion in a community of citizens’ (ibid., 21). The process of neoliberal restructuring does not end with the state’s withdrawal of full citizenship rights to all its subjects. The marketplace, which has appropriated and privatized service provision, generates its own discourse that normalizes and suppresses contradictions. For example, a psychiatric patient is left to fend for himself or herself on the streets, rather than being holistically attended to by the mental health system; a hungry person receives medication (sleeping pills) rather than food (Schepeo-Hughes 1992). We, the public, normalize these sce-

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narios on the grounds that they are self-initiated and not brought about by an insensitive and dehumanizing system that violates people’s basic human rights. It is within this complex configuration of structural violence, anchored in and perpetuated by liberal democracies and neoliberal restructuring, that interlocking inequalities of power – race, gender, and disability – may best be understood. The immigrant racialized woman is constructed as an outsider; add disability to this construct, and she is rendered socially invisible. If she is identified, she is ‘designated by the term “problem”; and she lives beneath the shadow of that problem which envelops and obscures her’ (Collins 2000, 3). It must be noted that able-bodied racialized women are desirable for their labour, whereas women who have disabilities – deemed to be neither waged workers nor homemakers (unpaid workers) – are constructed as a social burden. They are construed as recipients, rather than givers, of care. At the same time, we must note that rarely do the excluded Others speak from a discrete space. They critique the larger system from an embodied understanding of its workings, and they engage with it to remake their worlds. It is important to recognize that disenfranchised groups do ‘find ways to escape from, survive in, and/or oppose prevailing social and economic injustice’ (Collins 2000, 9). The question, then, is how do we develop an integrated model, without opting for an add-and-stir strategy that retains the master status of one category? The key is to establish a connection between interlocking constructs of inequality and the larger structures of power. I use the genre of storytelling, complemented by a life course perspective, to capture the intricate process of how ‘hegemonic processes and oppositional practices mutually constitute and reconfigure each other’ (Collins 2000, 9). A key goal is to ‘describe how discourses are produced, enacted, and reproduced,’ and ‘to notice the opportunities for resistance in the same processes that also contribute to structural reproduction’ (ibid.). Storytelling In the past three decades, storytelling has been given centre stage in the works of anthropologists and feminist scholars globally. This genre’s potential for grassroots research has been noted and recognized. As is the case with any kind of methodology, however, in its unexamined

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form, storytelling can be appropriated by dominant groups. Afsaneh Najmabadi’s work, entitled The Story of the Daughters of Quchan [an Iranian Village]: Gender and National Memory in Iranian History (1998), illustrates this problem. Najmabadi shows that the daughters’ stories of abduction were inscribed into the national imagination, not for the purposes of redress but to serve the political ends of the constitutional revolution then in progress (1900–12). Taking the refugee hearing process in Canada as an example, Sherene Razack (1998) argues that unless displaced women present themselves as oppressed by their communities and families, they are not heard and are not granted asylum. Their stories of victimization, according to Razack, serve to perpetuate the epistemological binary between the developing world and the West, with the latter positioning itself as superior. This dynamic overlooks the colonial legacy of exploitation that creates asylum seekers in the first place (Razack 1998). Unless women’s stories advance patriarchal and imperialist interests, they are not heard, and these stories do not make their way into the national and the international corridors of power. In an attempt to recognize storytelling as a creative activity, narrative scholars have identified critical and reflexive perspectives. Gelya Frank suggests that gathering information on a life story must be accompanied by ‘a methodology in action as a source of primary data’ (2000, 22). This stance, she argues, allows us to see how the biographical self is influenced by and also influences a particular cultural milieu over time. Frank observes that if stories are listened to in an appropriate way, they have the potential to effect social change. This is because when readers engage with stories and their various interpretations, new meanings are created that will reverberate in the readers’ own local culture and sometimes the dominant culture as well. Julie Cruikshank, in The Social Life of Stories: Narrative and Knowledge in the Yukon Territory (1998), suggests that we pay attention to how stories are analysed and translated across boundaries. This focus, Cruikshank argues, breathes new life into stories, as it creates greater appreciation for how the stories can be retrieved and reintroduced in new contexts. Commenting on the stories of marginalized groups, Razack (1998) notes that they reveal the world that we ought to know and they suggest knowledge of a just world. To grasp the meaning of the storied content and the multiple ways in which it is expressed, we must pay attention to the larger sociopolitical contexts that suggest the complex ways in which individuals are connected to the world. Storytelling has achieved

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a level of theoretical and methodological sophistication. Frank (2000), for example, identifies reflexivity as an important principle that addresses the charge that research about less privileged women can be potentially exploitative. The principle of reflexivity allows Frank to ask questions that are rarely considered in research, regarding ‘how I came to understand Diane, how working with her transformed my understanding of her life, and how our collaboration may have influenced the life story Diane has to tell’ (2000, 2). Addressing the issue of betrayal in field research, Aihwa Ong cautions us not to assume that subjects of our research are devoid of power and agency. For us to recognize this, Ong argues, we need to have a more complex understanding of power as ‘a decentralized, shifting and productive force, animated in networks of relations rather than possessed by individuals’ (1995a, 353). This stance, according to Ong, is vitally significant, as it enables our subjects to be part of the ‘cultural conversations in metropolitan centers’ (ibid.) – a location that gives central space to people who are otherwise relegated to the margins. Reexamined notions of reflexivity and power are of value, as it is through such activity that progressive dialogue can be fostered. The above discussion establishes one point: stories or narratives have the potential to effect social change, provided they form part of the larger sociopolitical and literary landscapes of societies. Racialized women who have disabilities are not part of the Canadian landscape. Their structural and social exclusions are intense. Yet, their stories must be heard if we want to write a different kind of Canadian history: a history where women with different abilities and from different cultural backgrounds have an active presence. I join Trinh Minh-ha in her observation that ‘it will take a long time, but the story must be told’ (1989, 119). Our listening must be directed to the process of how we come to know about the lives of the people who tell their stories and what we do with the stories once we have heard them. Establishing a Paradigm of Telling and Listening As Kathleen Casey points out, ‘listening or reading are not passive, neutral activities. We engage in a dialogue, whether we are in an actual conversation with another person, or watching the television, or reading a newspaper. While we read or listen, we continually make judgments about what we see or hear; we make sense through a process of selection and rejection. And what we select and reject very much

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depends on who we are, who is speaking to us, what they say, how they say it, where and when we are listening’ (1993, 7). In my focus on the genre of storytelling, I wish also to explore its potential for dialogue and conversation across cultural and political boundaries. Storytelling can direct our attention away from an analysis of power and domination that focuses exclusively on the victimization of socially oppressed groups. Critical scholarship has enabled us to identify processes and structures that dominate and exploit, but this body of work does not always incorporate the viewpoints of the oppressed groups. Recovering alternative and unexamined knowledge is the sine qua non of stories. With this perspective I introduce the narratives of racialized women who have disabilities. Through their experiences of crossing territorial and social borders, these women bring to light the not-quite-articulated knowledge that exists in between systems. Ong observes that anthropology and other disciplines need to reflect on the postcolonial condition of increasingly living inside, outside, and through East-West divisions (1995a, 368); she argues that lives bred on the borderlands between cultures offer new imaginings about gender, age, and self-knowledge. Ordinary women telling their own stories ‘inter-nationally,’ to use Ong’s phrase, should establish epistemological and methodological points of intervention into two disconnected bodies of work: disability studies and antiracist feminism. By paying close attention to the context and the narrative text (content), I have endeavoured to create conversational space that renders the texts replicable. As Dorothy Smith has explained, the iterability of texts fosters actual social relations between reading, writing, speaking, and hearing subjects (1999, 134). Active texts are enabling, as they lift the words and the scenes from the text and give them life. The actualization of this narrative potential takes place by means of language through which the text can potentially enter into someone’s course of action. Smith observes that the language of ‘individual consciousness lies on the borderline between oneself and the other. The word in language is half someone else’s’ (ibid.). Narratives perform a similar task. They create ‘a position of telling and listening’ (ibid.). Stories must have a home in a community of listeners on whom the story makes a claim to be remembered. Our challenge is to listen to the voices of these women in a manner that allows us to capture the lived reality of the speakers while simultaneously understanding how the dominant system shapes this reality. Our task is to recognize these women as producers of context-specific knowledge. It is only at this

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level that we can speak ‘with them’ (conversational mode) and not ‘for them’ (appropriating their stories). A focus on dialogue does not overlook the workings of power that pose innumerable barriers and cause undue suffering.10 The act of storytelling assumes the presence of other people, an audience through which one can ‘imagine that one’s life belongs to a matrix greater than oneself, and that within this sphere of greater Being one’s own actions and words matter and make a difference’ (Jackson 2006, 14; original emphasis). The act of reaching out sustains a sense of agency in the wake of disempowering forces, reconstituting events so that they are reworked ‘both in dialogue with others and within one’s own imagination’ (ibid., 15). It is through this form of dialogue that we feel that we are ‘actively participating in a world that has otherwise discounted and demeaned our lives,’ and ‘there is no denying that storytelling gives us a sense that though we do not exactly determine the course of our lives we at least have a hand in defining their meaning’ (ibid., 16–17). The imperative to engage in storytelling is greater when the world does not acknowledge our social existence and fails to recognize our worth as human beings. Stories are then ‘authored and authorized dialogically and collaboratively in the course of sharing one’s recollections with others’ (ibid., 22–3); hence, ‘the story comes into being within an already existing web of human relations’ (ibid.). The need for stories reflects our desire ‘to be part of some kindred community,’ and ‘this need is most deeply felt where the bonds of such belonging are violently sundered’ (ibid., 33–4). Through storytelling we can claim some sense of agency and purpose. Storytelling has the potential to ‘call into question our ordinarily taken for granted notions of identity and difference, and so push back and pluralize our horizons of knowledge’ (ibid., 25). In this sense, storytelling is like any other speech act in which the force of language derives not from its own internal essence or logic, but from the social and institutional context in which it is deployed and authorized. Through storytelling we strive to show that our personal world is connected with the wider world of others, ‘so that one’s voice carries and one’s actions have repercussions in the State, nation or community with which one identifies’ (ibid., 25). Life Course Perspective Complementing and enhancing the genre of storytelling, a life course perspective allows us to see the workings of the larger system over time

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and across generations. The value of a life course perspective in locating human agency within larger social, historical, and political contexts is especially significant. Focusing on the experiences of individuals, families, and cohorts, it does not present a monolithic plane. The framework of a life course perspective highlights how experiences are shaped by and also themselves shape life trajectories over time. The dimension of time enables life course work to bring out key themes: how life events unfold and what factors inform changing life trajectories, and how individuals make meaning of their lives at a particular time and place (Archer 2000; Benson 2002; Moen et al. 1995; Priestley 2001). The emphasis on larger units of time enhances our understanding of how social structures and history, including changing social relationships, are embodied in the lives of families and societies. A life course perspective does not leave out individuals and their context-based experiences; rather, the perspective dialectically incorporates an analysis of how social context and structure influence individuals, looking at the interplay between local and macrolevel developments and at interconnections between biological, psychological, and social changes. A life course perspective makes it possible to see how individual lives are connected to the social world and to the lives of others. As Michael Benson puts it, ‘our lives carry the imprint of what happens in our particular social world’ (2002, 6). This imprint may also be felt dramatically when the trajectories of our lives are disrupted by major events, such as displacement or being rendered ‘disabled,’ or by incremental influences such as the lack of access to social services, which may preclude full participation in the life of the community. In this study, a life course perspective is embedded in my analysis of narratives as I explore geopolitical displacement and examine what happens when life course linkages are severed.11 Put another way, when the connection between one’s biography and the social world is broken, as is the case with the women in our study, how are these rebuilt? Our task is ‘to seek out the often subtle ways in which those who do not apparently control their own lives actually constitute different local worlds for themselves, worlds from which they can reflect upon the ironies of their situation, both locally and globally’ (Lock and Kaufert 1998, 9). Patricia Collins argues that ‘producing intellectual work is generally not attributed to Black women artists and political activists. Especially in elite institutions of higher education, such women are typically viewed as objects of study, a classification that creates a false dichotomy between scholarship and activism, between thinking and doing. In contrast,

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examining the ideas and actions of these excluded groups in a way that views them as subjects reveals a world in which behavior is a statement of philosophy and in which a vibrant, both/and, scholar/activist tradition remains intact’ (2000, 17). A contextual grounding, I argue, constitutes a sound approach that allows us to identify the nuances and contradictions embedded in people’s lived reality, best expressed through the medium of storytelling. Given this orientation, I focus on the following questions: How is structural violence enacted within the institutional space of liberal democracy in Canada? What impact does structural violence have on the lived reality of racialized women who have disabilities? How do these women negotiate the complex configuration of stigmatization (as bearers of negative markers of difference) and remake their lives, discursively and otherwise? In sum, this book represents one attempt to show the potential of narratives and storytelling to bring to the fore a different understanding of race, disability, and gender – an understanding that is grounded in but also goes beyond the paradigms of the social model of disability and antiracist feminism. At the centre of my study are women whose experiential knowledge and ideas on disability, race, and gender are barely known to anyone but them. In keeping with the spirit of this work, I have endeavoured to present the women in this study as authors of their own narratives.

2 The Difference of Disability

Mehrun begins by saying, I am 48 years old. I came to Canada as a Ugandan refugee twenty-eight years ago. My life in Canada has been that of a woman with polio.1

In this passage Mehrun lays out a context for her life that is at once personal and political. She lets the reader know who she is (age, status, and country of origin), and then she highlights the condition that has shaped her experience in Canada. Rather than employing the personal tragedy model, ‘I have polio,’ she says: ‘My life in Canada has been that of a woman with polio.’ Within the space of two sentences, Mehrun lays the groundwork for an exploration of political, social, and economic factors that inform the lives of racialized (non-white) women with disabilities. But, unlike the literature that advances tightly knit conceptual frameworks, such as the social class, gender, race mantra (Bannerji 1995), Mehrun brings to the fore an embodied understanding of what life is like for a woman with polio. Mehrun does not present herself as a victim but as someone who is engaged in a lifelong mission of rendering herself and people who have disabilities socially visible; this is an activist stance. Let us begin with the question: Why do we marginalize and ‘other’ people whose bodies do not meet the societal criteria of normalcy? A variety of explanations have been suggested. Some scholars have advanced the argument that disability mirrors our other self where the boundary between Us and the Other is blurred. When confronted with the condition of disability, which is a different way of being, we recognize our own vulnerability. Moreover, our society gives us the message

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that we can remain young and able-bodied if we consume ‘health’ products and services (Albrecht 1992; Shakespeare 1998). Other scholars have argued that there is no room for Other bodies in a marketbased economy where productivity and able-bodiedness are the order of the day (Wendell 1996). People who have disabilities are hierarchically ranked. In North America, men with disabilities enjoy a higher status than their female counterparts; white women with disabilities rank above non-Western (racialized) women with disabilities (Fine and Asch 1988). A further differentiation and ranking is imposed on particular kinds of disabilities, with physical disabilities ranking higher than other forms of disabilities. This complexity calls for a contextualized understanding brought to the fore by individuals with disabilities telling their stories of everyday realities. This perspective has guided my reading of Mehrun’s narrative. As an immigrant woman with a disability, Mehrun has confronted barriers imposed by a racist and a sexist immigration policy (Thobani 1999). Although Mehrun worked her way through the system and acquired the qualifications of a social worker, this accomplishment is diminished by the fact that she is unable to find a job in her area of expertise because she is ‘disabled’ and ‘a woman of colour.’ In Mehrun’s words: Social service providers respected me for my qualifications but only as a client. They could not accept me as a worker, as I would be their peer.

Mehrun’s experiences with the system – both positive and negative – led to her acquisition of the knowledge that she now utilizes to help institutionalized women, and men, who have disabilities move into the community. In this work, Mehrun does not make any gender- or classbased distinctions; her movement through multiple spaces – where one or more socially marked differences (race and gender) count in some contexts but are subdued in others – should caution us not to impose our theoretical frameworks too quickly. Mehrun’s narrative shows that an exclusive focus on the gender, disability, and race lens may lead us to cast her into a discrete sphere where she is only seen as an activist for racialized women with disabilities. Not wanting to remain within the confines of such a discrete category, Mehrun positions herself within the mainstream to carry out her activist work. Mehrun’s focus on disability, as opposed to other signifiers of difference, speaks to the debate on whether studies of disability, gender, and race should be

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informed by one organizing principle or by an analysis of intersecting inequalities of power (Jiwani 2001). Or perhaps Mehrun’s narrative suggests a new paradigm? In my analysis, I have taken into consideration Nita Kumar’s argument that dominated groups do not merely respond to control by more powerful classes; nor should the actions and practices of these groups be taken as ‘expressions of “primordial,” “traditional” preferences and affiliations’ (1994, 2). Rather, Kumar submits, both subversive and normative discourses ‘develop in tandem, each speaking to the other continuously even if clashing volubly only seldom’ (ibid.). I have retained the overall structure used by Mehrun to frame her account of (1) her migration and settlement and (2) her life in Canada. In addition to maintaining a temporal order to her story, this structure serves to highlight a political script: the reworking of an essentialized and imposed disability identity. This strategy makes it possible for the narrator to take the position of someone ‘who actively participates in the making or unmaking of his or her world’ (Jackson 2006, 12). As Michael Jackson points out, one is at the same time ‘subjected to actions by others, as well as the force of circumstances that lie largely outside his or her control’ (ibid.). Human initiatives may be located in the inbetween space of agency and structure. One can be an actor and also a person who is acted upon, for ‘no one person or group ever arrogates agency so completely and permanently to itself that another is reduced to the status of a mere thing, a cipher, an object, an anonymous creature of blind fate’ (ibid., 13). This aspect of actor/acted upon is brought especially into relief by socially marginalized people. Narrative framing is an important strategy for reconstituting events, as illustrated in the way Mehrun situates her story, temporally and in space. Migration and Settlement Mehrun’s self-introduction, ‘I came to Canada as a Ugandan refugee,’ cannot be laid to rest without comment. The very act of seeking asylum as a refugee suggests a powerful story of being uprooted by political upheaval, persecution, and economic crisis (Krulfeld and Camino 1994). Refugees are gendered and racialized. Gendering comes into play through acts of omission: The U.N. Convention and Protocol on Refugees does not identify gender as a ground for persecution. The protocol’s enumerated grounds include ‘race, religion, nationality, membership in a particular social group, or political opinion’ (Razack 1998,

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102). To correct this omission, Canada has introduced gender guidelines: ‘That women can now seek asylum from gender-related persecution is perhaps one of the most remarkable achievements in Canadian legal history in this century. For the first time, it has been acknowledged that women can be persecuted’ (ibid., 89–90). But women are only granted asylum through reinforcement of the dominant narrative of Canada saving Third World women from the chaos and oppression of their communities and nations (ibid.). Able-bodied refugee women may be granted asylum with the expectation that they will take up dead-end and poorly paid jobs (Dossa 2004; Mohanty 2003; Pratt 2004). A disabled body, erroneously assumed to be unfit for waged work, is not wanted. Constructing racialized people who have disabilities as the Other of the Other, Canadian immigration policy bars the entry of applicants with disabilities, the significance of which cannot be overstated. Racialized women who have disabilities are not part of the multicultural and gendered landscape of Canadian society. Finding themselves isolated and unwanted, they are left to their own devices to negotiate the realities of their lives in their new homeland. Starting a New Life We came to Canada, and were put up in a hotel by the government. I stayed at the hotel for a couple of months. I was absolutely confined, and so was my father. My father looked after me while my mum went to work. He was very good and took care of all my needs. There was one problem. I could not go to the bathroom. My mum took me to the bathroom when she left, and I would wait for her to return in the evening so that I could go to the bathroom but I did not feel comfortable. As my father was looking after me, he could not go out and find work. The Manpower [government employment and immigration office] suggested that I should live in the hospital so that my father could look for work. I was placed at the Rembrandt Hospital for one and a half years. My experiences at the hospital were scary. I stayed there for one and a half years. They were a bunch of strangers. There was one man in a coma; another person was dribbling. There was a man with iron lungs. I could only see his head.

Canadian immigration policy stipulates that men are breadwinners and women carry a double load: waged labour and the nurturing care

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of families and communities (Agnew 1996; Dossa 2004; Lee 1998, 1999). The situation of Ugandan Asian women reveals the workings of this discriminatory gendered policy, with the exception of some professional women. Equipped with social capital – e.g., knowledge of English and a ‘Western’ education – some women make inroads into white-collar work. Other highly qualified women are underemployed in the service sector, for example, nurses working as nurse’s aides or trained teachers working as substitute teachers. During the 1970s and 1980s middle-aged immigrant women were hired for low-entry jobs (clerical, service, and manual) to fill labour gaps (Dossa 1988); a later study revealed that these women were both subtly and overtly coerced into taking early retirement packages (Dossa 1999). Mehrun’s 54-year-old mother Khatoun was affected by the labourfocused policy that, in fact, does not acknowledge the cheap labour of women of colour. Khatoun found work in the service sector as a hairdresser. The question of Mehrun’s care was not raised. A second question was not even considered: What were Mehrun’s own aspirations in her country of adoption? As a 19-year-old high school graduate, Mehrun had wanted to continue her studies. Her physical incapacity did not mean that she was mentally incapable – a common but erroneous societal perception. If a service provider had engaged her in a conversation, he or she would have discovered that Mehrun was bright, gifted, and well read. Mehrun explains that she took to reading to compensate for her limited physical mobility, and in her school years, she helped other students with their English. The service provider would also have learned that Mehrun had been brought up in a nurturing and loving family. She had received more care and attention than her siblings, an older and a younger sister. Moreover, her parents had sought to give her the best education, in the hope that Mehrun would be recognized as a contributing member of society. In Canada, while Mehrun’s mother went to work, her father took care of her; but there was one problem: she could not go to the bathroom. My father would have taken me to the bathroom but I felt uncomfortable. Before my mum went to work she took me to the bathroom and again when she came home in the evening. I had to be careful with what I ate or drank in the day. I could hardly eat or drink.

Social marginalization amounted to enforced starvation during the day because no female was available to assist Mehrun with her personal

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hygiene. Mehrun’s first experiences in Canada may be read in terms of a moral reflection on our society’s treatment of people that it regards as different (i.e., not white, able-bodied, and ‘productive’). Mehrun’s narrative of her experiences also may be interpreted as a political text that reveals how people who have disabilities are socially constructed as undeserving, and as bodily praxis that brings to light the fault lines of a social system. The question that Mehrun posed as a newcomer was: What kind of society have I come into where I cannot go to the bathroom [read: must starve]?

The answer to this question lies in the fact that, as an immigrant woman with physical disabilities, Mehrun was not supposed to be in Canada at all. Consider the following scenario. A social worker placed Mehrun in a hospital so that her father could undertake waged work. Mehrun tells us: The social worker said, ‘He cannot stay at home forever. He needs to work.’

Taking care of his daughter was not considered work. One might have expected that gender role reversal would have made her father’s caregiving work more visible, but this was not the case. My experiences at the hospital were scary. I stayed there for one and a half years ... But then I was lucky. An instructor from Langara College suggested that I should take courses at the college. We had met this instructor, as he was a member of the Refugee Board. I liked the idea. I took two courses – in psychology and English. I did well and I was transferred to UBC [University of British Columbia]. I studied and got my degree in Social Work. I worked as a counsellor for a little while. I had great difficulty in finding work. I never got a full-time job. I was not hired because of my disability and colour of skin.

The phrase ‘from the frying pan into the fire’ best describes Mehrun’s early experiences in Canada. Food deprivation and social isolation at home gave rise to a situation where she was compelled to assume a disability identity that she did not desire. Assumption of such an identity undermines one’s personhood. Disability identity connotes negative

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images of dependency and passivity. In addition, this construct brings into relief a trap that is difficult to escape: it is only when one subjects oneself to the essentialized label of disability that one is entitled to social assistance. We are left with the medical model, which results in ‘a wide range of specialized interventions, for example, various kinds of medical procedures, day care projects, social security benefits and particular forms of institutionalized accommodation’ (Drake 1999, 3). Carol Estroff (1981) reported that her ‘mentally ill’ research participants were forced to act crazy so that they would be entitled to social services. While in the hospital, Mehrun lived with a disability identity, reinforced by the fact that she was among people with various kinds of disabilities. She was looked upon as a woman with polio. With her disabled body as the focus of attention, her gender and race were relegated to the background. Mehrun states that, other than providing personal hygiene care, the hospital did not help me in any other way. I made friends there but that was it.

Mehrun’s year-and-a-half stay in the hospital was humiliating, as she was not sick. To make sense of her ‘incarceration’ in her new homeland, Mehrun tells her story of what it was like to live with polio back at home. We may note that Mehrun does not portray a nostalgic image of life in Uganda. She presents her embodied understanding to highlight the paradox of dependency, care, love versus independence, isolation, and segregation. The following section demonstrates how Mehrun perceives the two situations. Remembering Life Back at Home Mehrun’s memories of her life back at home are those of love and care that she received from her parents: I was included in all the family gatherings. My family never made me feel that I was different.2

But Mehrun was also aware of contradictions that became an integral part of her life. When she went to the mosque, her father took care of her. The front area was reserved for members of the congregation who

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sat on the floor; Mehrun sat on a chair at the back, among elderly males. The discrete space that she occupied had an impact on her identity: I was never looked upon as a girl/woman – just someone who was a child. I grew up to be a very shy person.

The experience of having to suppress her female identity may have prompted Mehrun to be very particular about her clothes. She dresses immaculately, complete with make-up and styled hair. This is one way that she makes her presence felt in a world that otherwise does not ‘see’ or take notice of people who have disabilities, such is the extent of their marginalization. Consider Mehrun’s observations about her wheelchair, which she regards as part of her body. She tells how members of the congregation would leave their things under her wheelchair and instruct her to look after them until they finished socializing with their peers. The members of the congregation did not engage Mehrun in a conversation: It did not occur to them that I, too, am a person.

In Uganda, Mehrun attended school and earned good grades. This was made possible by the availability of an African maid (aya), who waited on Mehrun. Because of the privileged but ambiguous middleman status of Asians in colonial Uganda, they were economically better off than African Ugandans. Their relatively privileged position under European rule made it possible for them to exploit Africans for cheap labour. Mehrun also had an African playmate and another night maid. Mehrun’s access to this kind of assistance did not arise from an idiosyncratic situation. It was structural and had everything to do with the political agenda of British colonialists, who made it possible for Africans to be used as servants. Asians in Uganda and East Africa as a whole were placed in a no-win situation. The British confined Asians, constructed as a homogeneous category, to towns and small settlements where their labour was channelled into trade: ‘Any non-African found living or trading outside a gazetted township commits an offense’ (Morris 1956, 196). Likewise, Tisa Fernando reported that ‘the Asians were clustered in well-delimited residential districts’ (1979, 362). Sandwiched between colonized Africans and white colonizers, Asians occupied a

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precarious position. Their engagement in trade and commerce was tenuous, as they had no administrative or political voice. This contradictory situation made it possible for Mehrun to utilize the services of African maids: underpaid and overworked by Asian and European families alike. And having African maids made it possible for Mehrun to have physical access to places that would otherwise have remained out of her reach. Spending so much time with her African helpers (two maids and a playmate) enabled Mehrun to cross the servant-master boundary and explore the humanness of individuals who would otherwise be dismissed as the Other. Mehrun states that her playmate was treated as a ‘member of her family,’ and when they moved to Canada, they asked her if she wanted to go with them; she declined. Although Mehrun does not provide details on her relationship with her ayas, her closeness to them subverted the colonial practice of segregation based on race: white, brown, and black. Mehrun’s own experience of Otherness (disability) enabled her to feel the Otherness of her black helpers, and she observed that it was through their experiences that she realized ‘what it is like to be excluded.’ Mehrun’s different body occupied new and even ‘forbidden’ spaces: she crossed the racial divide to an extent in her everyday life, and she crossed the gender divide in the mosque. Asians in Uganda selectively adopted the ways of their colonial masters. The British system of education, colonial medicine or biomedicine, and colonial discourses on progress and civilization were incorporated into their lives with varying degrees of modification. Their uncertain future made the heterogeneous Asian communities lean more towards the West and outward, rather than inward towards the East African countries where they lived for close to three generations. At the time of Mehrun’s birth, in the 1950s, biomedical intervention was available for well-to-do families in Uganda. Mehrun’s parents sold their store and used the money to take her to England for treatment. During their year-and-a-half stay there, Mehrun underwent three surgeries to straighten her legs. As a cultural system, biomedicine is not devoid of norms and ideology. The surgeries were intended to make Mehrun’s body as ‘normal’ as possible; this put pressure on Mehrun to perform in a social world designed for people who have symmetrical bodies and can walk. Mehrun made some headway with support from her parents. She finished high school and was getting ready to pursue further studies

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when the Asian exodus brought an end to her plans. Mehrun migrated to Canada with her family. Living in the Community The deficiency discourse applies to a refugee woman with disabilities. This discourse defined Mehrun as passive, unproductive, and a drain on the system and informed her Canadian social worker’s decision to place Mehrun in a hospital. She received cost-effective care, and her father undertook waged work. The social worker did not give any thought to separating a young girl from her family. Mehrun was compelled to take on an essentialized disability identity. In her county of birth, she had played multiple roles as a daughter, sister, niece, student, and community member: Mehrun had accompanied her sister on her dates ‘to keep an eye on her.’ During family gatherings (picnics and festive occasions), Mehrun had enjoyed having fun with her aunts and uncles. In the mosque, she had affirmed her membership in the community through everyday ritual practices and worship, despite occupying an all-male space. In school, Mehrun had been looked upon as someone who would help other students with English. Susan Whyte and Benedicte Ingstad offer the apt observation: ‘Where a person’s worth is conceived in terms of individual abilities and achievements, we would expect impairment to diminish personhood. But where persons are primarily considered in terms of relations to others, this would not necessarily be the case’ (1995, 11). Mehrun’s experiences in her homeland cannot be mapped on a monolithic plane. There were contradictions at work. Mehrun stated that her family’s love and care had rendered her dependent, and she had felt obliged to play act: I always had to pretend that I was happy. Everybody would fuss if I looked sad. I could not be myself.

Mehrun also felt the contradictions of normalization: she had to act normal so that she could fit into the community that had taken steps, if minimal ones, to accommodate her difference in a positive way. When I first came to Canada, I had thought that I would achieve indepen-

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dence. Back at home, I had felt that I was too dependent on my parents. I could not even do my own banking. I was too much sheltered. My parents meant well and used all their resources to ensure that I was comfortable and that I would be able to lead a normal life as much as possible. They even took me to England where I had a couple of surgeries. And then we moved around in Europe. My father used to carry me. When we returned to Uganda, my father had to start his business all over again. So my parents gave me the best, but as for me I felt that I was too sheltered.

Rendering a person ‘dependent’ and ‘sheltered’ is a means of minimizing the difference of disability. To put it another way, minimizing difference can amount to not giving a person the opportunity to do things differently, as the reference point invariably is an able-bodied society. As Mehrun succinctly observes: Persons with a disability need their environment to be ‘different’ so that they can achieve the same things as their able-bodied counterparts. Therefore, in order to be the ‘same,’ they have to be different.

In her new homeland, in Canada, Mehrun wanted to get an education and belong to multiple communities, her own and others: I would like to be independent but at the same time I also want to be part of a world where I am accepted for who I am.

She added: The community should accept the fact that I am different but I am also a person like everyone else.

Mehrun has had to struggle on her own to advance these goals in a climate where the difference of disability continues to be problematic. Rober Drake’s comment on the situation in Great Britain can be applied equally to Canada: ‘British disability policies have been narrow in scope, largely uncoordinated in implementation and fragmentary in effect. They have focused on attempts to reconcile disabled individuals to an essentially alien world rather than reconstructing that world to

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meet the needs of all citizens irrespective of their cognitive and physical conditions. As a result, until very recently, a civil rights orientation has been substantially absent from legislation. Lawmakers and service professionals remain the key players in the creation of policy, in the development of institutions and in the implementation and monitoring of practice. The voice of disabled people has seldom, in any effective sense, been heard’ (1999, 179). Consider the Canadian context. In a study by Status of Women Canada and the Roeher Institute, entitled Disability-Related Support Arrangements: Policy Options and Implications for Women’s Equality, it is reported that ‘the recent writing of disability theorists and activists also draws attention to the ways the dominant notion of citizen precludes people with disabilities from achieving equality. Disability theorists have described the ways current architectural design and infrastructural planning pose physical barriers to the participation in social life of people who have disabilities. Certain cultural norms about bodily functions and appearances dehumanize them, and social expectation about activity and performance render them as unproductive, non-contributing individuals’ (2001, 10). The power of the socially constructed world that excludes those whom it regards as disabled, thus Other, can be understood from the current debate on human genetics and disability. A glimpse at this debate is helpful. There are three main issues in the public debate on human genetics and disability. The first is conceived in the form of an equation: genetic disease = unwanted life = abortion. Individuals who have disabilities are cast in a negative light (unwanted) even before they are born. The second is a fundamental shift away from accepting a child who has disabilities to banishing disability, as a result of accelerated research in detecting genetic disorders. The social implication of this either/or scenario is that parents who choose to have a baby who has disabilities are faced with a societal attitude of: ‘Now that you have brought this baby into the world, it is your problem.’ The third issue concerns dismissal of diverse ways of being. The possibility of looking at individuals with disabilities as gifted human beings who are different (Mehrun’s explanation above) is excluded at the outset. Ironically, the debate on genetic diseases continues with vigour de-

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spite the emergence of a new paradigm of community inclusion that recognizes that people who have disabilities have a right to participate as full citizens in the life of a society. Despite this development, genetic research focused on detecting ‘defective’ genes has not abated. Not all disabilities are genetically linked. Research on genetic disorders puts into circulation terms (‘defect,’ ‘abnormality,’ ‘malformation’) that are then applied to people with disabilities as a whole (Reinders 2000; see also Lock 2007). This form of cultural currency feeds into the social construction of disability. Furthermore, it blunts the force of the civil rights movement that recognizes that people with disabilities are entitled to the rights, responsibilities, and roles accorded to the non-disabled population. Genetic debate on disability has cast people who have disabilities into a disease paradigm of defect and abnormality. Introduce the elements of race and gender (negative differences) into this paradigm, and you have the makings of even further dehumanization.3 These developments help us to understand how Mehrun was hospitalized, even though she was a healthy 19-year-old, who had recently been uprooted from her home country. Mehrun had two goals when she came to Canada: to pursue her education/career and to live with dignity and respect, which are not socially accorded to people who are different. Mehrun’s navigation of her options is discussed in the following sections. Life in Canada A Toronto newspaper headline from 7 September 1972 reads: ‘11,000 Uganda Asians Hoping to Settle in Canada,’ and another one from the next day proclaims: ‘Ugandan Asians in Thousands Seek Canada Entry.’4 These are two headlines from the Toronto Star, and they capture the controversy at the time surrounding Ugandan Asian refugees in Canada and other parts of the Western world. Two issues are brought to the fore: numbers (explicitly stated) and race (implicit subtext). The West’s perception of refugees is shaped by the image of people fleeing social and economic disorder in their countries of origin; rarely does the West allow itself to be implicated in this mass displacement of people (Malkki 1995; Razack 1998). Consider the following political responses to the Ugandan Asian exodus. ‘[Prime Minister] Heath Calls Crisis Talks on Asians.’ This 2 September 1972 headline from the London Telegraph Group refers to British

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opposition to the admission of Ugandan Asians to Great Britain, a stance that reflects public anxiety about living with the Other (read: uncivilized/not like Us). One ‘public-spirited’ citizen was noted in the press as saying that ‘she has no objection to a Ugandan Asian moving in next door to her home ... “Just so long as he conforms to the same sort of standards as we are used to here,” she added’ (ibid.; note the usage of ‘he,’ although the citizen herself was a woman). It is difficult to impose normative standards on a large number of refugees; hence, the anxiety over too many people next door, notwithstanding that a considerable number of these people held British passports. Negative and racist responses were also echoed in Canada – a white settler society. As was the case in Britain, numbers were an issue. ‘In two days Canada may have picked up 11,000 prospective Asian immigrants in Uganda – 6,000 more than Canada originally indicated it would take’ (Toronto Star, 8 September 1972). Playing on the public’s anxiety about ‘too many nonwhites,’ the newspaper informed the Canadian/white reader that ‘85 Asians interviewed have 196 dependents.’ The script of refugees being a burden on the host society was writ large, as ‘dependents’ do not head for the labour force or ‘hit the ground running,’ to use Lorne Foster’s (1998) words. The article reported that the immigration minister, Bryce Mackasey, would admit Ugandan Asians on the basis of not just humanitarian grounds but ‘the likelihood that they can make a go of it in this country’ (Toronto Star, 8 September 1972). The criterion of qualifications was in the forefront when admitting refugees. Refugees, like other potential immigrants, are subject to medical examination. But this process is applied with greater vigour to the former group. This is because refugees are potentially categorized as ‘mentally unstable/traumatized’ and as ‘contagious’ (Malkki 1995; Ong 1995b). These perceptions are grounded in our imagined fear that people who do not fit into the neat and well-defined categories of a nationstate and our/white culture are a threat to our system. Refugees who have disabilities are subject to even greater stigma, as the label of impairment (not normal) is inscribed on their bodies. Individuals who have disabilities may be admitted into Canada under a ‘minister’s permit’ – a special permit granted on compassionate grounds – with the caveat that they are to be supported by family members. A question that is often asked of non-white Canadians is: ‘Where are you from?’ (James and Shadd 2001). The underlying message is: ‘You don’t belong here,’ and it is also conveyed to second and third Canadian-born generations. This attitude reflects the ambiguity that surrounds migrants and refugees from the global South. Essentially, the

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North does not desire non-white people in its midst – a point brought home in the debate on Ugandan refugees, framed around race and numbers. The refugee ‘humanitarian’ script entails a double standard: it stipulates that refugees/Others may be admitted to Canada on compassionate grounds, but the real intent is to secure workers for the labour force. The skills criterion, the bedrock of immigration policy, also applies to would-be refugees. The Canadian workforce would face a tremendous shortfall if it did not draw upon immigrant labour from the South (Li 2003). Where does Mehrun fit into this picture? To begin with, she is one of those individuals whose presence is not desirable, as reflected in the alltoo-commonly heard message: ‘If you are a non-white person who is not heading for the labour force, then you should not be in Canada.’ This explains why Canadian social services do not accommodate the needs of racialized minorities (especially women, the elderly, and the disabled). Within the social services sector, issues that reflect this trend include the lack of minority representation in the administration; a Eurocentric focus in both norms and practices; paucity of research on racism; absence of ‘culturally’ (dynamic sense) sensitive services; and lack of resources for the formation and implementation of equity policy (Agnew 1996; Henry et al. 1995). Second, social services confer a dependent status on the client/consumer (Estroff 1981; Estes 1979). In the case of people with disabilities, Whyte and Ingstad argue: ‘Thus disability in Europe and North America exists within – and is created by – a framework of state, legal, economic, and biomedical institutions. Concepts of personhood, identity, and value, while not reducible to institutions, are nevertheless shaped by them. Notions of citizenship, compensation, and value lost through impairment and added through rehabilitation are institutionally reinforced constituents of disability as a cultural construct. So is the idea that disability is a medical condition for which technical expertise (educational, psychological, social) is the answer’ (1995, 10). Countercurrents are at work in this medicalized and profit-based landscape. Especially notable is the independent living movement (ILM), an offshoot of the community integration movement. The core principle of the ILM is to effect a shift from the patient/client role to that of consumer. The ILM/client stance empowers individuals to have choices about where to live, how to spend their money, and how to enhance their own life opportunities. Using the framework of independence and integration, René Gadacz puts it this way: ‘Independence means as nearly as possible the same degree of control and self-deter-

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mination in the day-to-day living processes as are generally available to nondisabled people. Integration means as nearly as possible the comingling in the daily living processes with the rest of the community and society, including the fullest possible use of the comprehensive range of services and facilities that are available and used by nondisabled persons. These goals comprise what is commonly referred to as independent living, also called the independent living paradigm and/ or the IL movement’ (1994, 64). What is overlooked here is that people who have disabilities have restricted choices because of exclusive environmental, social, political, and economic factors. In a market-oriented society, goods and services are commodities to be purchased for consumption. In such a context, medically defined social assistance is insufficient to enhance one’s goals in life. Moreover, the ILM is not independent of the ‘disability business.’ Coined by Gary Albrecht (1992), this term refers to the appropriation of services and goods by corporate industry – the stakeholders of the capitalist system. Goods and services that are made available to persons with disabilities must be economically viable. Meanwhile, there are groups of people who are exploited and designated as the underclass in a capitalistic system, and care attendants constitute one such group. While they are hired, supervised, or fired by consumers who have disabilities, they form part of the unskilled labour force working in deadend jobs. It is therefore not a coincidence that the majority of attendants are female, including women of colour (Lee 1999). Lastly, Eurocentric norms and practices govern the disability business as well as its associated social services sector. Issues of race and gender are barely addressed (Riddell and Watson 2003). Yet, it was through avenues created by the ILM that Mehrun managed to leave the hospital and establish her residence in the community. Mark Priestley has observed that ‘the concept of independent living (or integrated living) has been a central theme in the development of disabled people’s claims to greater self-determination’ (2001, 10). This is how Mehrun explains it: While I was in the hospital I heard about an agency that was helping disabled people to live in the community. Through this agency I was introduced to three other people and the four of us moved into a group home in Vancouver.

This move was made possible because of the availability of an attendant whose role was to help each person (two females and two males)

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with her or his daily needs, also referred to as activities of daily living (ADL). Attendants constitute an integral part of the ILM (DeJong 1983; Gadacz 1994; Priestley 2001). But, in reality, they also form part of a low-paid and relatively unskilled pool of workers. They are deployed to support the emancipatory discourse of ILM: as consumers, people who have disabilities can hire, supervise, and fire the attendants as they see fit. Mehrun states: We made our own decisions about what to eat, and we directed our own care. The ‘blind girl’ made the meals, and we were living like a ‘family’ pitching in together. But the problem was that the attendant was not very responsible. She would not show up for work. It was really hard. We almost fired her.

While Mehrun and her peers were trying to deal with the problem of the attendant, another situation appeared on the horizon: the whole group was relocated, as the landlord wanted the house for himself. In addition to the difficulty of moving within a short period of time (seven months), a new group had to be formed. Mehrun explained that the ‘blind girl’ decided to live on her own, and her second roommate, in the words of Mehrun, was slow but not ‘retarded.’ He was taken off the disability list (support services) to correct the erroneous diagnosis. Note the use of the terminology, the ‘blind girl,’ shows the internalization of societal norms. Mehrun sought the assistance of the disability services agency to find other roommates. This brings home a poignant point: although people with disabilities live in the community, they are not part of it (Dossa 1992; Drake 1999; Status of Women Canada 2001). If the latter were the case, Mehrun would have had the opportunity to look for able-bodied roommates. That she had to resort to an agency indicates continual involvement by the state (the civil arm) in the lives of people who have disabilities – an involvement that, ironically, isolates them further. The idea of a community is not broached because the state is seen to be assisting people who have disabilities, albeit at the price of stigmatizing their identities. There is no such thing as an even distribution of state resources: only those people whose condition is medically legitimated are entitled to benefits. Mehrun’s experiences in the second group home brought to light a new set of issues, compounded by a sad event: Mehrun learned that her mother had cancer.

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Racialized Bodies, Disabling Worlds This was a very stressful time for me. My situation in the group home did not help. One of the guys in the home had a strong personality. And he got the most attention from the attendant. All that I needed from the group home was flexibility of hours so that I could visit my mother in the hospital. But they did not understand. The attendant was mean.

A schedule governed by a financial bottom line did not serve Mehrun’s needs. The uncompromising hours of the attendant limited her ability to see her mother. Mehrun left the group home: I decided to live with my dad, and my younger sister looked after me for a few months.

This was only a temporary arrangement, as Mehrun could not rely indefinitely on family care. She therefore moved into a third group home with another woman, assisted by the same agency that, in Mehrun’s words, ‘brought people together’; however, non-disabled people were not on their list of potential roommates. Mehrun explained: The agency has a list, and they put people together according to their sense of how it will all work out.

‘How it will all work out’ was addressed from the point of view of the system’s concern for full occupancy of the newly created group homes and tight scheduling of the attendants’ work. The needs and aspirations of the residents took second place. The system did not foster social relations among the residents and between the residents and their attendant. Residents were left to their own devices to get to know each other and win the attention of the attendant in a competitive environment, where the attendant’s role of assisting with personal hygiene, cooking, and cleaning was crucial. The stigmatized image of group homes (NIMBY: not in my back yard) made it difficult for residents to get to know their communities in a way that would make them feel a part of them, rather than apart. The able-bodied attendant, supposedly from the community, was not spared the irony of being isolated within what was supposed to be ‘community living for the disabled.’ As one attendant informed me, ‘If I am not connected to the community, how can I connect with the people I work for?’

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A second issue is that attendants are placed in a non-reciprocal relationship: they are expected to provide care and attend to what is defined as the physical needs of residents, while the latter are positioned to receive care. The element of reciprocity is absent. In such a situation, friendships and social ties are not cultivated. None of the residents in Mehrun’s group home were expected to assist each other, as would happen in a familial setting. The system controlled the lives of the residents through limited resources – resources that were allocated to them according to a narrowly defined needs-based model with limited capacity to accommodate crisis situations. Consider Mehrun’s poignant observation: If I did make friends with the attendants or some of my roommates, it was always after we were not [living] together. I notice that my friends are exresidents and ex-attendants.

The set-up in the third group home did not work for Mehrun. We were two Queen Bees. But my roommate had the upper hand because she was already there [in the home] when I moved in and besides, she was white. She had a better relationship with the attendant. I found that my needs were not taken care of. So I left.

Mehrun took an unusual step made possible by the independent living movement: she moved into an apartment and hired her sister as an attendant. This gave Mehrun some respite from outsiders (attendants), but the problem was that the apartment had only one bedroom. This meant that ‘my sister had to sleep in the living room for a year.’ Also, paying her sister put Mehrun in an awkward situation: ‘I could not let my sister know what needed to be done.’ Can family members be rendered into ‘professional’ caregivers? Can professional caregivers be ‘family members’? Categorizations and social constructs make it difficult to blur these socially constructed boundaries. Mehrun’s experiences with ILM bring home the dilemma of shared care versus private care. Shared care is restrictive: I could not do things like take a nap in the afternoon or go out if the attendant was not available. She was too busy taking care of other residents. We all had to fight for her time.

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On the other hand, one-to-one care was not viable, as it compromised Mehrun’s privacy: Living with a stranger in the house is not easy. She became privy to my personal life and I did not feel comfortable.

Mehrun worked around this dilemma by moving in and out of homes (10 altogether) so that she did not have to put up with one situation for long. She used both shared care and one-to-one support care. Mehrun’s moves were made more difficult by an additional factor: her post-polio condition ‘characterized by a further weakening of muscles that were previously affected by the polio infection. Symptoms include fatigue, slowly progressive muscle weakness and, at times, muscular atrophy’ resulting from ‘the death of individual nerve terminals in the motor units that remain after the initial attack of polio’ (National Institute of Neurological Disorder and Stroke; see also Wilson 2005).5 Medical models emphasize degenerating parts of the body. Mehrun is quick to point out that her experience of weakening muscles (post-polio syndrome, or PPS) was an outcome of the stress from what seemed like an endless string of moves from one residence to another. At the time when Mehrun was experiencing PPS, the doctors ‘did not get it’: When I went to the doctor and told him that I had breathing problems and muscle weakness, he said, ‘It is all in your head.’

Mehrun then went to another doctor who was more knowledgeable about the syndrome. Even with him I had a hard time. He also told me that it was all in the head. I went through many months of consultation. They finally agreed that I had some medical problems and gave me the necessary documentation.

The diagnosis helped Mehrun take a short-term medical leave from her work. But over the long term, the stress of her job was too much for her. Her condition got worse: My doctors would again not recognize my experiences. They kept on telling me that I had to change my attitude, that I had a mind-set. I went into depression for a long time. I had no reason to get up in the morning.

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Suffering and pain caused by a physical condition are compounded by insensitive institutional responses (Das and Kleinman 2001). What makes institutions divert from their expressed goal of remedying problems may be explained by the fact that our system is geared to serve stakeholders rather than sufferers (Ross 2003). Only after Mehrun’s condition worsened did she get the medical documentation to move into a special housing unit, primarily designed to make life physically comfortable for people who have ‘severe physical disabilities.’ The process of medical assessment was not easy. First, Mehrun had to undergo five or six tests for the doctors to determine that her lung capacity was only 60 per cent of the average. Second, she had to stay overnight in a clinic to produce documentary evidence that her muscles were not functioning. Finally, she had to sleep in yet another clinic, where her headaches and experience of high fatigue could be ‘measured’: I had to go through all these tests to convince them that I needed a ventilator. Only then was I allowed into the co-op special housing. I always have to fight for services.

Mehrun moved ten times over a period of fifteen years. This aspect of her life allowed her little opportunity to make friends. Friendships are not easily made when disability status, rather than common interests, is used to bring people together. In Mehrun’s words, Sure we cry and feel if someone dies, but this is the extent of our friendship. It is someone whom you see every day has passed away. You do feel for this person.

This is an important point. Activists and scholars have noted that one’s humanity is restored and valorized in the context of sociality and social network where we are recognized as persons (Das and Addlakha 2001; Kittay 2001). One residential unit that Mehrun moved into had more spacious rooms for accommodating electronic wheelchairs and built-in devices for opening and closing doors and curtains electronically. Other modifications included lowered countertops, special faucets and door handles for people who have limited hand use, and ramps for wheelchair access to a raised living room. It is ironic that access to the living room (a place of gathering) did not foster social relationships for two reasons:

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(1) the residents were brought together on the basis of their ‘disability’ rather than shared interests, and (2) the residents were compelled to compete for attendant care. Hence, the possibility of them working together was minimized. It is important not to underestimate the value of special housing and its capacity to make life easier for those who live there. Special housing can play an important role in fostering community integration of people who have disabilities; however, the market orientation of special housing, as well as of the rehabilitation industry, often works against the goal of enabling people who have disabilities to live in the community as participating citizens. Mehrun states that living on the third floor designated for people who have disabilities allowed her to have privacy, as the attendant did not have to be in her unit at all times. The disadvantage was the unavailability of the attendant to assist at unscheduled times. The attendant’s time was divided among six other individuals on the same floor. The first floor (except for one suite) and second floor were reserved for able-bodied individuals who, in return for a rent subsidy, were expected to mingle with the residents who have disabilities. Cooperative housing meetings and rooftop garden care were two activities meant to facilitate social interaction between the two groups. But, in actual fact, Mehrun reports, This does not happen. They [the able-bodied] are busy; so it is we [people with disabilities] who actually attend the meetings and tend to the garden.

Locating ‘special needs suites’ on one floor isolates residents who have disabilities. In Mehrun’s words, We live among ourselves. [But] we don’t have much in common except that we are disabled.

If residents who have disabilities were living on other floors, too – an arrangement that would have been possible if cost-effectiveness did not govern attendant care – they would have greater opportunities for social interaction with other residents. At a fundamental level, the problem is not just about artificially ‘forced’ encounters, but a failure to recognize the intricate connections between all our lives and the fact that all bodies are vulnerable. Those of us who are able-bodied may only be temporarily so. This point needs emphasis in an age-denying

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and death-denying society that holds to a myth of a frozen middle age (Lock 1993). Specialized housing diverts efforts away from effecting fundamental changes in the social and physical environment that currently accommodates only some people (the non-disabled and young, white males) while it socially ‘disables’ others (people who have impairments, the elderly, racialized women, and others). The visibility of a limited constituency of people who access specialized housing perpetuates the myth that something is being done for people who have disabilities. In actual fact, only a few people are served, because of scarce resources and stringent and biased medical criteria that determine eligibility. Segregated living on the third floor – a mini-institutional model, according to Mehrun – did not meet her needs socially or physically: Living on the third floor was good in some ways. I had my own apartment, but it was frustrating, as I could not get the care when I wanted. You have to plan everything including your personal hygiene as to when you can go to the bathroom, what time to get up, what time to go to bed. If I wanted to go out, unless this was planned beforehand, this was difficult, too. Today when you were coming here, I had to tell her [the attendant] in the morning that we will have tea at four.

It is evident that the attendant had a tightly scheduled routine. The highly structured organization of the attendant’s time is not conducive to seeing the person beyond the socially constructed image of a body with disabilities. The social implications of instrumental care can be gleaned from what Mehrun had to say: I don’t go to see my friends if they call me and say, let’s go to the movies tonight. I say, ‘I have not planned this so I can’t do this tonight.’

But, even when she moved, this dilemma continued: I moved to a beautiful apartment downtown with my attendant. But here I was so cut off. It took me a long time to cross the bridge and come to this part [specialized housing] of town. I had to come here because my friends and the volunteer work I do is all here.

When Mehrun moved back to the specialized housing unit, therefore, she did not move into the third floor. While she was away, she had

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kept track of one ‘specialized’ unit on the first floor. She applied to live there when it became vacant. ‘Now I live here with my attendant.’ When I ask Mehrun whether this arrangement was working for her, she states: It is the best I can have now. I am getting tired of having an attendant here all the time. I do not get any privacy to spend some time on my own. The only time she is not here is when my family comes on Sunday evenings. I sometimes ask her to go for a walk. I wish there could be a better arrangement. If the attendant were shared with one other person, it would be better. Or if I could afford a house, the attendant could live in the basement.

Mehrun does not think that the last two options are open to her. The government would only consider a shared attendant if Mehrun shared an apartment with another person or if she lived by herself on the specialized floor. The only options available to Mehrun are maximum care with compromised privacy or minimum care with more privacy. Mehrun explained that in this time of budget cuts (downgrading of the social services sector), she is keeping a low profile. She is afraid that budget cuts may trap her and her peers into a residential mini-institutional situation with shared care. These numerous housing moves took their toll on Mehrun. The challenge was not merely that of settling down in a new place. It took time to get to know her new attendants. She also had to get to know her new environment, including the accessibility of public places, stores, and parks. Mehrun did not talk about the stress of getting to know people. They did not seem to be part of her social landscape. She tells how when she goes to the supermarket in her wheelchair, people are helpful, but this is the extent of their involvement. Physical integration (living in the community) does not translate into social integration – a state of affairs that speaks to deeply seated dichotomies in contemporary Western societies (Butler and Parr 1999; Dossa 1989, 1992). Mehrun’s post-polio condition was not due solely to poliomyelitis, a viral infection that can enter the central nervous system and destroy motor neurons. The impact of social factors was also strong, an aspect brought to light in Mehrun’s narrative about working in Canada. ‘They Always Saw Me as a Client, Not as a Worker’ When Mehrun was at the hospital, a college instructor, also a member

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of the Refugee Board, visited her. He encouraged her to take some courses. I took two courses at the college. I studied for two years and did well. I then joined UBC and got a degree in Social Work after four years of parttime study. At this time [1973] there were not many services for the disabled. They made some adjustments. They moved classes to accessible rooms. The counsellors helped. They gave me extra time for exams. My dad helped me to get books from the library. But for the whole day I could not go to the bathroom. I did not drink for the whole day. I did not hang out in the cafeteria like my classmates. Everything was so limited. I spent all my time moving from one class to another. If it was raining my books got dripping wet. I finally graduated and got a degree in Social Work [1979].

Mehrun’s schooling took place during her residential moves discussed above. Despite these constraints, she completed her degree and then looked for a job. She got in touch with one of the ministries with whom she had established contact during her search for housing: They were happy to learn that I had graduated from the university but they found it hard to accept me as a colleague.

She continued to be seen as a ‘client.’ Mehrun wanted to work so badly that she was willing to take anything. Her first job as a summer student turned into ‘permanent’ work: I guess I was at the right place at the right time. For four years it was really good. It was a lot of work for me, as I had to get up early in the morning. Also getting to work was not easy, as I had to change the handi-bus twice. The first one was not allowed to cross the boundary to the place where I worked. They came under different municipalities. I really enjoyed it in the beginning. But then I noticed that they paid me little money. They did not give me the wages of a social worker. Also, they took advantage of me. They expected me to be on call for seven days, twenty-four hours a day. My job was to hire attendants for group homes in the way of trouble-shooting. They would page me in the middle of the night. I had to find someone from the emergency list of people.

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Racialized Bodies, Disabling Worlds It was difficult to hold a job that made so many demands on me. I was burned out and I began to have breathing problems. You can say that I was having post-polio syndrome. If this was the case it was precipitated by stress. At this time my mum passed away. My muscles became weak. It was at this time that I noticed that I did not have a handicap or any kind of pension. I had not worked full-time [Mehrun worked full-time but was paid as a part-time worker]. I had also not worked for long [enough] to qualify for any benefits plan. I was having a hard time. As my condition was getting worse, I wanted to go on longterm disability. When I had first started going to work, I wanted to lead a normal life. But instead I was struggling to just live.

Mehrun studied and worked at a time when there were major changes taking place in the disability rights movement. There was a shift from the rehabilitation model (RM) to the independent living model (ILM), as noted above. An additional comment is in order. In their comparison of the rehabilitation model and the independent living model, DeJong (1983) and Gadacz (1994) both identify the following elements that have remained unchanged since the time of their writing. The rehabilitation model locates the problem in the individual, who is then rendered into a client for professional intervention; a therapist or counsellor trains the client for gainful employment and for performing the activities of daily living, and the client may be expected to undergo psychological therapy. The independent living movement focuses on societal barriers – disabling worlds. With the ILM model, greater control is acceded to the individual as the consumer to make it possible for her or him ‘to live independently and productively in the community and to live with the same freedom of choice as a non-handicapped person’ (Gadacz 1994, 59). Through the ILM, Mehrun received physical and financial support to live and work in the community. The independent living movement has put a new discourse into circulation, one that sees people with disabilities not as charitable cases or bodies that need fixing, but as people who are different. To reiterate Mehrun’s words: Persons with a disability need their environment to be ‘different’ so that they can achieve the same things as their ‘able-bodied’ counterparts. Therefore, in order to be the ‘same’ [human], they have to be different.

Sociologist and disability activist Irving Zola puts it this way: ‘I had

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thought of them [tired, sore, and cramped legs] as part of the physical condition, the inevitable experience resulting from my disability, part of the cost of traveling and part of being Irving Kenneth Zola. Only after the rise of the independent living movement ... and the resulting change in self-consciousness was I “able” to use a wheelchair. Only then did I realize how much of my travel “experience” inhered not in my disability but rather in the society in which I lived – socially maintained and socially constructed’ (1982, 4). Zola critiques the usage of nouns and adjectives such as ‘deformed,’ ‘defective,’ and ‘invalid,’ that ‘taint the whole person.’ He draws our attention to the difference between ‘being confined to a wheelchair’ and ‘using a wheelchair’ (1982, 11). Advocates and scholars have argued over and over again that people with disabilities are citizens entitled to benefits and rights that able-bodied people take as given (Albrecht 1992; Garland-Thomson 2005; Wendell 1996). Yet, this perspective has not been fully translated into policy and the provision of services (Drake 1999; Status of Women Canada 2001). Backed by legislation and social policy, the independent living movement should have made it possible for Mehrun to live and work in the community like everyone else. This did not happen. Her multiple moves in search of a home that would allow her to live with dignity (with privacy and appropriate help with personal hygiene) suggest that the rehabilitation paradigm has not disappeared. Its workings could be noted in such areas as the social distance between the attendant and the residents. It is important to note that residents were brought together on the basis of their diagnosed disabilities rather than as persons with complex lives. In the area of waged labour, Mehrun found herself confined to a discrete sphere within the labour force. Although trained in Canada as a social worker, she did not find work in her area of expertise. She was hired to do trouble-shooting for other residents whose attendants did not show up for work. Furthermore, Mehrun was placed in a dead-end and poorly paid job with no room for upward mobility. She received part-time pay for full-time work. Mehrun attributes her exclusion from the workforce to two factors: the agency’s inability to see her as a colleague as opposed to a client, and that she is a woman of colour: I did not get hired because I am disabled and coloured.

However, it is important to note that, other than in instances that she

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regards as ‘exceptional situations,’ Mehrun does not single out race as a factor that prevented her from living and working in the community as a full citizen: It does not matter what race you belong to. Disability is a major issue.

Mehrun’s focus on disability as the master status is context-specific and strategic. She has not had the opportunity to meet racialized women with disabilities because, as a result of restrictive immigration policy, her roommates have all been white. The issue is not that Mehrun is not cognizant of how the socially constructed categories of race and gender have impacted her life opportunities. It is rather that she uses identities in a strategic and flexible way (Atkin and Hussain 2003), best understood in the context of her everyday life. Two examples highlighted by Mehrun illustrate this point. Family Visits Every Sunday, Mehrun’s father visits her. He brings Indian food and an Indian movie (South Asian). Her sisters follow suit. This is a routine family time. All my roommates and all my attendants have met my father. He is there every time I move or need help. Every Sunday my family visits me. My father brings extra food and we give it to them, as they all like it.

Mehrun’s get-together with her family has become a ritual: We first have lunch, and then we watch an Indian movie. This happens every Sunday. Sometimes my uncles and aunts join us. If they can’t come, they phone us. Even those who are outside town phone at my house on Sundays because they know that they will find us here all together.

Ethnic foods invoke elements of history, culture, family life, reciprocity, and affect (Mankekar 2002; Watson and Caldwell 2005). The Indian food and movie are a testimony to Mehrun’s history of migration: ancestral connections to India, a home in Uganda enjoyed by three generations, and resettlement in Canada. History as it unfolds through a familial scene affirms her identity and her interconnectedness to other

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human beings. The regular family gathering reinforces Mehrun’s efforts to be seen as a person (daughter, sister, niece), rather than as a woman who has disabilities. In response to my question on racism, Mehrun states: Racism has not been a big factor in my life. It depends on how you present yourself. When these people [attendants and roommates] see me with my family, and when they begin to see that I am a caring person, they look upon me differently and not as a woman of colour.

Mehrun’s affirmation of herself as a person in the context of relationships offers a point of intervention into the rehabilitation model that compartmentalizes the lives of individuals. The model’s impact is strong, even if Canadian social policy recognizes that people who have disabilities are social beings with citizenship rights and entitlements; the legislation mandating such rights is not fully implemented. As a result, the basic needs of people who have disabilities in such areas as housing, education and career training, employment, income supplementation, and community participation remain unmet. Three major reasons for this have been identified. The first concerns the division of labour between federal, provincial, and municipal governments. The federal government may initiate policies and provide funding while provincial and municipal governments take responsibility for the provision of social services, prioritizing which constituencies they will serve. This is invariably a political decision. Second, the downsizing of the social safety net in the 1980s impacted disadvantaged populations severely; services that were once available have been subjected to cuts. This explains Mehrun’s comment: ‘I will lie low,’ as she fears that her apartment building will become, in her words, ‘a mini-institution’ in terms of attendant care. Third, social programs are fragmented and uncoordinated. Consider the amount of energy and time that Mehrun had to spend searching for a residence where she could live as a citizen with dignity. Furthermore, racialized people who have disabilities are overlooked in the arenas of research, policy, and the provision of social services. While some recognition is given to gender, race is subsumed under the collective and master category of disability. In view of this above situation, Mehrun has charted a path where the issue of difference is addressed in its full complexity. Consider her advocacy work – the second example.

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Community Activism Mehrun appreciates the social services that she receives in Canada: Through these services things that I had thought were not possible are now possible. I now have choices. I administer the money not just for patient care or nursing care, but how I want to live.

It is this latter aspect that has given Mehrun the space to go beyond the categories of disability, race, and gender and to affirm herself as a person: I have to take the initiative and do things that I think will help me spiritually, mentally, and socially.

Mehrun’s holistic vision has translated into volunteer work. The site from which she works is the hospital where she was institutionalized when she first came to Canada. Mehrun’s goal is to give back to the community what she has received in the form of services, to establish her identity as a volunteer worker, and to assist people who have disabilities to live in the community: At the hospital there are people who have been living there for thirty years. It is not easy for them to move into the community, especially when a full support system is not in place. In my work I find out what kind of services are there for them. I go to the hospital and talk to the people and try and convince them that they should give a try to living in the community. You see these people have a lot of fear. They have been protected and they don’t know where to start.

Mehrun is connected to a number of service organizations and is a board member of an organization that addresses the needs of people who have disabilities. She uses these connections to help people who want to live in the community. Mehrun feels that the presence of a critical mass of people with disabilities in the community will help nondisabled people see that we are people first, and that our disability is just a part of who we are.

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Mehrun’s work, however, confines her to interacting with people with disabilities and their advocates. Of the people at Mehrun’s fiftieth birthday party, 90 per cent were ex-roommates or ex-attendants. But it is through numbers (through a critical mass) that she attempts to effect change so that the onus is not placed on the isolated individual to integrate into the community. Embodied Spirituality Racialized women with disabilities are excluded from multiple spheres of life, a fact this book underscores throughout. The process of exclusion – enacted in everyday situations – is such that it marginalizes these women even from their own communities. For example, their status as women means that their families feel the need to protect them from sexual violence. This can take the form, as one woman recounts, of ‘keeping us in the house.’ Mehrun feels that her own experiences are the exception to this general practice. Her parents aspired to give her a good education to compensate for the fact that ‘I would not get married.’ Yet, she continues to feel excluded from the Muslim community that has formed part of her and her family’s identity. She states that she does not feel accepted as an equal. ‘As I grew older, I worked out my own understanding of Islam,’ an understanding that she also refers to as religion – a more inclusive framework for her.6 Religion should focus more on the emotions and the spirituality of the person. Internal values.

Mehrun thinks that this focus can humanize the lives of people who have disabilities: If they are considered as human beings, they would be treated more equally.

The strength of her argument is exemplified in her statement: Just because you are disabled does not take away from the fact that you are a person. Society should pay less homage to being physically perfect and concentrate on inner values.

She gives the example of social services:

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Racialized Bodies, Disabling Worlds Even when you apply for anything having to do with social services or independent living, they don’t look at your emotional needs. They only look at how much time you need for your personal care. It is your basic needs that are considered.

This partial focus, she feels, diminishes a person. Taking the example of specialized programs, Mehrun states that they are so specialized that sometimes you get put into a category that you don’t belong in, like for example, people are treated as though they have developmental disabilities to a large extent, whereas they may only be borderline and need a little bit of assistance. There is no in-between.

While Mehrun embodies her faith and has spiritualized it, she has not individualized it. She conveys the message that spirituality – encompassing emotions and values, and a holistic perspective – humanizes a person. She states: ‘We should learn to look beyond the physical.’ She fuses this dimension into her life’s work of creating a critical mass of persons with disabilities in the community. Emphasizing the human condition of disability and fostering social inclusiveness are two means by which Mehrun defines her heritage as a Muslim. Mehrun’s narrative reveals that there are different ways of being in the world that we need to nurture. They may be drawn partly from tradition and partly from knowledge derived from life experiences. Concluding Note We began this chapter by looking at the question of whether studies on disability, gender, and race should be informed by one organizing principle or by an analysis of intersecting inequalities of power. Our question was prompted by noting that the paradigm of intersectionality tends to be abstract and does not have the desired political edge for two reasons. First, markers of negative difference (race, gender, and disability) may not be cumulatively operationalized in the context of everyday life. While we can apply analytical rigour to arrive at an understanding of the workings of intersectionality of difference, we may do so at the cost of leaving out experiential reality, crucial for the production of context-specific knowledge. Second, the intersectionality paradigm, like other critical paradigms, has not escaped hegemonic appropriation. The integrated living movement provides one example. Initially im-

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bued with the expectation that it would reverse institutionalized care, the movement has been reduced to a formula for community living that relies on low-paid or unpaid female caregivers. This is on account of the state’s withdrawal of funding to effect progressive change. So where should we begin? One thing we have learned is that neither of these approaches (an exclusive organizing principle or an inclusive paradigm that may be politically impractical) is informed by the lived reality of people. A way out of this situation is to look at personal narratives and their potential for social transformation. When people tell their stories, ‘we will see what they have in common and [they] will begin to work for change’ (Hillyer 1993, 184). If we start ‘with each individual woman’s situation as it is at the time she tells her story, we may see the whole web more plainly than we do when we read “objective” summaries of experiences that have been presented by academic researchers’ (ibid., 187). This context has informed my reading of Mehrun’s story.

3 Narrative Moments from the Margins

Tamiza is the mother of two children: one of them has been diagnosed as autistic, the other as hydrocephalic. In telling her story of raising her children in a society that continues to segregate and stigmatize people who have disabilities, Tamiza exemplifies a perspective captured by May Yee: ‘But we know the issues that face us because we have lived them, they are our lives’ (1993, 4). Tamiza’s story is of interest because of how she reflects on her everyday experiences of negotiating the deep divides between people with disabilities and those without disabilities, the private and the public, the body and the mind, Us and the Other. Action and reflection (praxis) constitute the axis of Tamiza’s testimonial narrative. Here, self-representation is rendered into ‘re-presentation of an experienced embodied social reality’ (Bannerji 1993, 12), which for Tamiza constitutes a critique of the societal script of disability as ‘deficiency,’ which is compounded for racialized women. As researchers, we are often tempted to rework the chronology of events framed by a narrator. But in such a process we risk overlooking nuances and subtleties built into the narrative structure. For this reason, I have remained close to Tamiza’s original account. I have also exercised caution to avoid suggesting that she speaks from the discrete space of a racialized mother – a space to which minorities are often relegated to suggest that they can only comment on their own issues, and not those of the larger society. As Aihwa Ong has argued, ‘ordinary women telling their own stories inter-nationally – in the double sense of talking about border-crossing lives and the transnational dissemination of tales – should form a counterpoint to hegemonic narratives’ (1995a, 367). My analysis is informed by the critical wave of anthropology that

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requires that we delineate structural factors in concert with the voices of research participants. I have therefore located Tamiza’s story in the larger social and political contexts. My goal is to show that the issues that Tamiza discusses and brings home are not only applicable to her story on ‘how I raised two children’; Tamiza’s narrative insights (captured in the form of moments) have greater significance for our perception of disability and the need for the construction of alternative spaces. Reading Tamiza’s Narrative The birth of a baby can be a joyous occasion, and this was Tamiza’s experience: Faizal’s birth brought a lot of joy and happiness. We were so happy that I decided to have a second child right away.

Tamiza recalls that her son was toilet trained and walking by the time he was a year old: But I knew that something was wrong. I was constantly comparing him with my sister’s son.

Tamiza observed that Faizal was not learning and following directions like her nephew. She took him to a pediatrician and he informed her that everything was fine; all that she had to do was give him some time, as boys are slow. When Faizal was placed in a day care centre, his teacher put him into a special program: They took my child and kept him with mentally retarded children. I had never been exposed to disabled children before. I said, ‘My child does not belong here. My child can walk and talk. If you can’t provide the service, I will take him somewhere else.’ I was so hurt that Faizal was thrown with mentally retarded children. We took Faizal to a specialist and he said that my son is autistic.

Tamiza’s response, ‘My child does not belong here,’ has societal origins. Until such time when her son was diagnosed as autistic, she had no exposure to children who have disabilities, an indication of their social invisibility. This is even though the community integration movement had gained momentum by the time of Faizal’s birth, in the early 1980s.

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As Eva Kittay (2001) has shown, however, the movement’s entrenchment within liberal democracy does not advance the interests of people with disabilities or those of other marginalized groups. The human rights discourse of liberal democracy is not action-oriented (Henry et al. 1995). The liberal democratic premise at work in Canada is that, once the rights of people are enshrined in Canada’s Charter of Rights and Freedoms, they are implemented as a matter of course. Would Tamiza have been spared a traumatic experience if she had been exposed to children who have disabilities, including children of racialized minorities who have disabilities, in the course of her daily life? What difference would it have made if she lived in a society where the rights of people who have disabilities were substantively recognized? Before we examine these questions, let us explore Tamiza’s trajectory of raising her two children. Tamiza came to Canada in 1976 with desirable social capital. Her fluency in English and Bachelor of Arts degree, acquired through British colonization of Tanzania under U.N. Trusteeship, meant a deceptively easy entry into the job market. She occupied the lower sector of the labour force, preserved for immigrant women (Ng 1996). ‘I found a job the next day,’ she said. Tamiza worked at two jobs: as a bank teller by day and as an evening babysitter. Within two years, she got married. The couple had two children, both of whom were diagnosed as disabled. Tamiza related that she was fortunate to have family support. Her major struggle, highlighted in her narrative in different contexts, was to secure social services and to ensure that her children were recognized as persons. From her vantage point as a marginalized woman of colour, Tamiza identifies two challenges: lack of familiarity with the social services system and its inaccessibility: I think it is wrong to keep these services ‘hidden.’ I let the others [minority women] know that these services are there. It is their right to use them. (Original emphasis)

Tamiza makes a clear distinction between mainstream and minority populations. She considers the latter to be more disadvantaged, and says: This is why it was hard for me to find out what services were available. Even then, I had to struggle to get these services.

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In the course of raising her children, Tamiza experienced the multiple ways in which persons who have disabilities are segregated and excluded from society. She does not think that her own community is exempt from this entrenched practice. Tamiza struggles to create a space where her children can have a sense of belonging and claim their citizenship rights as Canadian Muslims. Below I delineate the political contexts that allow us to see Tamiza’s struggles as part of a larger process.1 Intersecting Differences Much of the literature on disability, and that on race, focuses on the issues of exclusion and stigmatization of people who are considered Other, that is, not like Us, inferior, negatively different, and of lesser value (Albrecht 1992; Priestley 2001; Zitzelsberger 2005; Zola 1982). Space, as a unit of analysis in its own right, has been added to this body of work. Far from being neutral, space sustains unequal relations of power. Canada offers a compelling example as a country where images of empty spaces and wilderness abound (Razack 2002a, 2002b). These images contribute to the myth that Canada was an empty land until developed by white settlers. This imagined scenario leads to the dismissal of two groups of people: First Nations, the original inhabitants of the land, and immigrants from the non-Western world. These groups are relegated to outsider status, and their contributions to the development of Canada remain unrecognized. The disenfranchisement of First Nations people, encapsulated by reserves and residential schools, speaks to the depth of their social oppression. In the case of immigrants, a double script is at work. At one level, their acceptance into Canada is constructed as an act of kindness and compassion on the part of the settlers – this explains the immigration debate as to whether Canada is overly generous in accepting too many ‘foreign/coloured’ bodies. At another level – an opaque script – immigrants are desirable for their labour, without which Canada would have been unable to develop into an industrialized nation. Racialized people with disabilities are absent in this spatialized story of exclusion.2 Race is the trump card. It is only non-white people who are racialized; the white race remains racially unnamed, and as such presents itself as the norm and as a reference point against which others are judged for the purpose of exclusion. The discourse on foreign/racialized bodies is accentuated if the person in question is a woman and has

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a disability. A racialized woman with disabilities is not a desirable immigrant. Unlike her able-bodied counterpart, she is perceived neither as a waged worker nor as a homemaker. She is socially constructed as dependent, which constitutes grounds for exclusion. The above discussion highlights a major issue: race and other markers of difference are not only embedded in state institutions and discourses; they also have a powerful spatial dimension. Posing itself as neutral and as part of our common-sense reality, space does not lend itself to deconstruction. To understand how space operates, we need to look at everyday life situations, including the norms and practices that inform them. We also need to note that bodies are contained in space. Our experience of space is politically and socially configured. Aboriginal bodies and the bodies of people of colour are confined to socially constructed spaces, reserves and ‘ethnic ghettos’ respectively. Despite the spatial and upward mobility of some of these bodies in the twentyfirst century, Canada does not guarantee structural inclusion. This does not preclude, however, the formation of alternative spaces (pockets and enclaves) where progressive change can occur. If space is fundamental to the exercise of power, it is within this very realm that we can identify contours of alterity. Before we explore Tamiza’s movement through social spaces, where the dynamic of what constitutes ableism or disableism (social constructs) is played out, we need to have a look at what has been heralded as a momentous development: the community integration movement (an umbrella of the ILM), and the politics of representation, respectively. The Community Integration Movement The community integration movement has been considered to be an important moment. Its ideological premise promises to integrate people who have disabilities into the community as citizens with social and civil rights, over and above their legal entitlements. But this movement has fallen short of its goal of meaningful inclusion. The reasons for this failure are multiple: the capitalist system’s emphasis on productivity and able-bodied individuals; disabling architecture and the larger society’s intolerance of the difference of disability, gender, and race; and a liberal democracy that secures Charter-status rights only for its paradigmatic citizens – white, able-bodied males. Gary Albrecht (1992) notes some of the ways in which the capitalist

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system disadvantages people with disabilities. The system’s stratified and hierarchical structure compels disability groups to compete for scarce resources; here, mental disabilities are considered to be of lower status when compared with physical disabilities. Within these two groups, there are other socially constructed hierarchies. Furthermore, people who are seen as not contributing to the market-oriented/profitbased system are defined as dependent on social services. This population then forms part of the consumer base of the ‘massive human services of our economic system’ (Albrecht 1992, 27; see also Estes 1979). The irony is that the very jobs secured by service providers are dependent upon people with disabilities, while the latter are kept out of the labour force on the erroneous ground that they are unemployable. Scholars have identified a stratified service sector: many of the frontline workers are people of colour, hired on a contractual basis and without fringe benefits (Lee 1999). The volume entitled Mind and Body Spaces: Geographies of Illness, Impairment and Disability, edited by Ruth Butler and Hester Parr (1999), identifies the built environment as a source of oppression of people who have disabilities by its accommodation of one kind of body – that which is ‘the embodiment of health and normality’ (Imrie 1999, 27). The reality of multiple bodies is denied. ‘For disabled people, many dimensions of the built environment are disruptive and violent precisely because buildings are underpinned by the embodied ideal of a body which fails to conform with the complexities of bodily interactions in space’ (ibid., 40). Liberal democracy’s emphasis on individual rights and freedoms does not advance the interests of people with disabilities, and women with disabilities are further disadvantaged. The social rights discourse in liberal democracies is flawed. It overlooks the reality that, within a nation-state, only members of the dominant group enjoy substantive rights. While others may hold legal citizenship, this does not translate into economic, health care, and civil rights. ‘First, it implies not only inclusion, but also exclusion: the citizenship of certain types of person implies the non-citizenship of others’ (Castles and Davidson 2000, 10). In liberal democracies, ‘they [Others] may have the right to vote, but social, economic, and cultural exclusion denies them the chance of gaining political representation or having any real say in the decisions that affect their lives’ (ibid., 11). Moreover, the individual rights discourse has created an ethical and a social vacuum, as there are no con-

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necting points to the community/communities; this point is poignantly brought home by the independent living movement, as we saw, for example, in Mehrun’s story (in Chapter 2). Ironically, securing the rights of individuals to make choices may isolate them further. Our discussion of the market economy model, the built environment, and the core values of liberal democracy serves to explain why the community integration movement has led to only the physical and not the social integration of persons who have disabilities. This is the scenario that Tamiza encountered when she first discovered that her son was ‘not normal.’ The social invisibility of disabled persons is a paradox: ‘Paradoxically, they are designated [disabled] so as to disappear, they are named [disabled] so as to go unmentioned’ (Whyte and Ingstad 1995, 8). In this landscape, disabled people of colour are especially disadvantaged: exclusionary Canadian immigration policy, an insensitive social services sector, and negligible research attention do not help their situation. The Politics of Representation Susan Whyte and Benedicte Ingstad submit that ‘the United Nations Decade for Disabled Persons in 1983 put disability into a global context and posed the question of how it may be understood in a multicultural world’ (1995, 3; see also Whyte and Ingstad 2007). This observation, from the editors of the volume entitled Disability and Culture (1995), forms the basis for a cross-cultural study of disability. Whyte and Ingstad consider it important that we understand ‘how defects of the body and mind are understood and dealt with in different societies,’ how disability affects ‘an individual’s culturally defined identity,’ and ‘what processes of cultural change shape local perceptions of disability’ (1995, 3). A ‘disability and culture’ focus informs the rare works available on people of colour who have disabilities; however, an exclusively cultural orientation fails to address political issues regarding citizenship rights and social justice. An illustrative example comes from the work of Henry et al. (1995; see also Hussain 2005). Henry et al. propose the term ‘democratic racism’ to capture the chasm between words and actions in organizational policy. They argue that the ideology of democratic racism encompasses a conflicting set of values: (1) commitment to the principle of social equality and justice and (2) non-commitment to action. The outcome of this dichotomy is the lack of social provision for racialized minorities. This conflict of val-

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ues leads to ‘biased and discriminatory organizational policies, practices, and processes’ (1995, 307–8). The discourse of ‘we are committed to the democratic principle of equality, short of implementing it,’ compels racialized minorities to struggle at multiple levels: securing resources to which they are entitled as Canadian citizens, combatting racism, and promoting principles of justice and equality. Faced with a situation where their traditions are not valorized, racialized minorities compartmentalize their lives (Dossa 2000) into public (mainstream) and private (community and family) spheres. The disjointed relationship between the two impacts on women’s work on two fronts: housework and waged work (ibid.). For minorities, the compartmentalization includes their culture and traditions such as language, attire, food, and ritual celebrations. Thus far the discussion has been guided by one question: Why was Tamiza not exposed to people with disabilities at a time when the community integration movement was gaining ground? Formulating a response to this question has led me to discuss multiple factors – the market economy, the built environment, and liberal democracy – that continue to marginalize people who have disabilities, particularly when race and gender are also issues. Structural exclusion makes it necessary for disenfranchised persons to spend time and energy securing their citizenship rights. In the telling of this struggle, they highlight the fault lines of the system and, in the process, suggest alternative scripts – a theme that I explore in relation to Tamiza’s experiences of raising her two children. Narrative Moments ‘How I Raised My Children’ Tamiza’s first-born son Faizal was diagnosed as autistic. The Autism Society of America (ASA) defines autism as ‘a complex developmental disability that typically appears during the first three years of life’ (2000, 2; see also Waltz 2005). The ASA explains how autism is a disorder that makes it hard for autistic people ‘to communicate with others and relate to the outside world’ (ASA 2000, 2; original emphasis). The ASA’s website informs one about the possibility of aggressive and self-injurious behaviour, along with the point that individuals with autism may exhibit unusual responses to people and resist change. A biomedical focus is evident in the discourse of individual deficit: ‘disorder,’

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‘aggressive,’ ‘self-injurious behaviour,’ and so on. The section entitled ‘What Are People with Autism Like?’ highlights further deficits such as ‘lack of spontaneous or imaginative play.’ Under the heading ‘Effective Approaches,’ we learn that early intervention is the best solution to the problems associated with autism. Autism as an abnormal condition that requires professional intervention is the sole focus of the presentation. The ASA’s authoritarian, all-knowing tone leaves little room for the experiential and embodied knowledge of people who are autistic or of those who care for them. We are not questioning the benefits of early intervention, but rather, pointing out that the focus on disease, deficit, and abnormal discourse is dehumanizing. The ASA’s website makes no mention, let alone acknowledgment, of the message that people with disabilities have been spelling out loudly and clearly: ‘We are not defective human beings but people who are different.’ The emphasis on disembodiment (a universal autistic person) erases differences of race and gender, both of which require consideration, as they constitute the axis of social inequality. Tamiza takes issue with the deficiency discourse on autism as an exclusively neurological disorder: He [Faizal] is high functioning and verbal. He can talk and he can let his needs be known. Most of the autistic children that I have encountered are non-verbal.

Tamiza’s focus on the lived reality of her son comes out in other scenarios, most notably in her articulation of Faizal ‘being a Muslim’ and ‘being a Canadian’ with citizenship rights. He is a volunteer. He picks up all the garbage and distributes flyers. He also helps with other things. He has learned a lot from the community and the community has learned from him. If I keep him in the closet like some other parents do, the community will never learn, they will never learn. Faizal has taught the community so much. For example, when it comes to distribution of ritual food, everyone is supposed to take one. If someone asks for two, he says loudly, ‘You are not supposed to take two.’ No one can dare ask for two when Faizal is around [the mosque]. (Original emphasis)

Tamiza portrays her son as active in the community. Her emphasis on mutual learning flies in the face of the dominant discourse, which is

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focused on medicalization and the dependency status of people with disabilities. More importantly, her speaking about her son’s activity, otherwise unnoticed, suggests the enactment of a different kind of citizenship, one that has been referred to as ‘publics constituted through voice’ (Das and Addlakha 2001, 512). Tamiza’s speaking about what is otherwise constituted as private, such as the domestic space or a place of worship, politicizes it in a way that can lead to a paradigmatic shift. Here, disability and impairment are located ‘not in (or only in) individual bodies, but rather as “off” the body of the individual and within a network of social and kin relationships’ (ibid.). Following Das and Addlakha, I argue that sociality, however tenuous, makes it possible for a person with disabilities to claim her or his citizenship in all kinds of dispersed sites. This potential is brought to light in the following vignette: You know I do not ‘hide’ my children. When people ask me, I tell them that they are ‘special needs’ children. If they do not understand, it is their problem, not my problem. I tell Faizal that he should use Islamic words, al hamdulillah (everything is due to Allah) and sukhran lillah (I am grateful to Allah), all the time. His workers [caregivers] ask what does this mean and this way they learn more about Islam.

Affirming a Muslim identity means being part of the global umma (Islamic community) whereby one lives within and outside national boundaries; in other words, ‘inter-nationally’ (see previous chapter, and Ong 1995a). We may note that nation-states do not promote deterritorialized and borderland positions. Pluralism is antithetical to a postcolonial imagining of a nation-state, which is ‘a regime of order and knowledge’ (Malkki 1995, 4) instituted to maintain the power and hegemony of one group to the exclusion of others. Yet, cracks and ruptures appear on this imagined landscape, giving rise to alternative discourses and imaginings. A case in point comes from a community of British Pakistani Muslims. In a study of this community in Bradford, England, Paul Bagguley and Yasmin Hussain report on the appropriation of the flag of St George during the 1998 World Cup by second-generation Muslims to claim their identity as British Muslims: while the flag served ‘as a symbol of their belonging within and support for England’ (2005, 213), it was always in conjunction with their global identity in the Muslim diaspora. The contradictions and ambivalence that racialized minorities encounter in the West are not lost on the

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authors. Bagguley and Hussain argue that British Muslims did not endorse the Union Jack, as it ‘is seen as a racist flag, the symbol of colonialism’ (ibid., 216), yet their adoption of St George’s flag is ironic, as it represents the crusades against Islam. Such is the nature of the inbetween spaces where minorities lay a claim to substantive citizenship and belonging. Tamiza’s son Faizal lives in a group home. Tamiza states that this is the best situation for him as he can participate in various activities: He is so busy that I can only reach him in the evenings.

Tamiza wants to ensure that Faizal grows up as a Canadian Muslim. She is painfully aware that the group home is a mainstream institution and as such does not accommodate the needs of the multicultural population, in terms of culture or religion. Tamiza stated that Faizal can ‘live’ his culture and faith during the weekends when he goes home. This is the time when she takes him to the mosque, and it is here that he gets exposure to his community. By ensuring that Faizal prays every day in the group home and that he uses Islamic words during the course of his interactions with social services providers (from the mainstream population), Tamiza has carved out a space where Faizal is able to express his identity as a Canadian Muslim. To assert an Islamic identity in the public sphere after 11 September 2001 is no mean task, as Tariq Modood has pointed out in speaking about Muslims living in Great Britain: ‘They [the Muslims] have found themselves bearing the brunt of a new wave of suspicion and hostility, and strongly voiced if imprecise doubts are being cast on their loyalty as British citizens’ (2005a, viii). Ironically, Tamiza’s son Faizal is able to speak as a Muslim and lay claim to public space, however limited, because in Tamiza’s words: He is innocent. He cannot hurt anyone.

The context for this remark is the increasing surveillance and policing of Muslims in the West, post-9/11 (Thobani 2007). Faizal’s practice of Islam (for example, he says his prayers in the evenings) establishes his presence in a group home in Canada. This is a significant step, given that ‘Muslim groups and the strategies they articulate for claiming rights to citizenship encounter particularly intense resistances and become the subject of intense scrutiny’ (Isin and Siemiatycki 2002, 191).

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It is a challenge for Muslims to claim their citizenship rights. Doing so entails a rethinking of ‘the universal figure of “western man” as the universal bearer of citizenship rights and obligations, just as other social movements have called into question the male, heterosexual, white, able-bodied, and propertied man as the universal exemplar of citizenship rights’ (ibid., 208). In the wake of increasing racial profiling of Muslims and further interrogations of whether Islam is compatible with Western liberal democracy, Faizal’s everyday enactment of Islam (in greetings and prayers) in a public space (his state-run group home) must not be dismissed lightly. It may be understood as an act of intervention, suggesting another way of being that ultimately comes down to reaching out and claiming a space of belonging. Faizal’s mother has trained him to express himself as a Muslim Canadian. Claiming this identity in a public space is a step towards securing his rights as a citizen whose relationship to the nation-state is bound to be complex. This point is brought home by Tamiza’s statement: I want my son to be a good human being in this world.

She qualifies this statement, saying that she wants him to be ‘a good Canadian Muslim.’ The issue here is that racialized people who have disabilities claim a multilayered identity, and within this complex sphere their ascribed status of disability as an absolute marker is subverted. To explore this process of alterity and becoming, I present narrative moments from Tamiza’s everyday life. This vantage point allows us to link local scenarios to structural and institutional complexes without diluting experience and subjectivity. Disability as Tragedy At the time we were coping with my first son, I was already pregnant. At this time I was seeing a gynecologist. We had to pay $500 extra for this service. When I did not hear from the doctor, I phoned him. There was no reply. I phoned again and asked the secretary why the doctor was not getting back to me. She told me that there was something seriously wrong with the baby that I was carrying. But she would not tell me. I told her that I wanted to know. She said that it was Chinese New Year and that the doctor is not available. I said, ‘I am coming there right now.’ I phoned my

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Racialized Bodies, Disabling Worlds husband at work, and I told him that there was something wrong with the baby that I was carrying. He came right away. When we saw the doctor, he said, ‘Your son has hydrocephalus,’ and he left the room. We had never heard of this word before. My husband said, ‘Let us go to the library.’ We did some research and found out as much as we could. We phoned my brother, who is a doctor. He told us that if he has hydrocephalus, we are going to have a lot of problems. I said, ‘I don’t want this baby. I cannot take care of two disabled children.’ I was six months’ pregnant and it is illegal to have an abortion at this time. But there was a doctor who was willing to perform an abortion. I did not sleep the whole night. In the morning, I told my husband that I want this baby. My husband was very supportive. He is my best friend. I am ashamed that I was considering aborting my baby.

This account brings home a poignant issue faced by parents with children who have disabilities: the tension between the desire to raise a child with a disability and societal pressure not to bring such children into the world. This scenario explains why Tamiza considered aborting the fetus. The actions of the three medical practitioners are revealing. The first one walked out of the room, dismissing the unborn life through body language, while the second focused on problems in raising a child with hydrocephalus. The third doctor’s willingness to perform a late, and therefore illegal, abortion speaks for itself. Strangely, the indifferent gynecologist and the ‘sympathetic’ doctor both give the same message: it is not desirable to bring a child who has disabilities into the world. We must not rule out the possibility that the practitioners did not have anything to say. Their professional training and socialization into the norm that the lives of people with disabilities are of lesser value may have contributed to their silence. Disability as tragedy is a view perpetuated in genetic screening: ‘It takes considerable theoretical agility to urge the public to support screening programs so as to prevent the conception of handicapped individuals while at the same time insisting that full respect be paid to such developmentally disabled adults that are already among us’ (Reinders 2000, 1; see also Lock 2007). From Tiny Tim to Telethon, the public discourse of childhood disability emphasizes personal tragedy and vulnerability. These discourses are, in turn, reproduced through daily encounters with other children, with adults, and with a variety of institutional contexts (Priestley 1999, 93).

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There exists a profound contradiction: we cannot take the lives of the unborn (read: defective fetuses) and at the same time respect the people among us who have disabilities. The message contained in the promotion of the screening program is, in effect: ‘Disability is not a desirable condition and therefore it should be nipped in the bud.’ Such a stance has wide implications, as it diminishes the advocacy work of people devoted to reversing society’s oppression of people who have disabilities. People with disabilities are reminded of their socially constructed abnormality in everyday life situations within neighbourhoods, workplaces, and social and medical institutions. These situations, however, do not preclude human agency. People on the margins challenge ‘the dominating centre by creating a public space and employing empowering poetics of the periphery’ (Cheungsatiansup 2001, 32). In niches and crevices within dominant systems, individuals with disabilities remake their worlds, affirming their worth and their value as human beings. As people from the disabled community are apt to point out, there are many other stories to be told about disabled people besides the medical ones. Many people who have disabilities reject the suggestion that they are living deplorable lives that would better not have been brought into existence. Rather, they view their lives as valuable because of what they are capable of doing, just as everybody else does (Reinders 2000, 3). Tamiza’s decision to give birth to her baby is a commitment to bring to the fore the script: disability = difference = valuable. Tamiza’s initial awareness of the task at hand, that is, raising two children who are socially constructed and imagined as abnormal, was brought home when she saw another woman in the hospital. During this time I met another mum. She had a baby girl who was disabled. We turned to each other for support. The baby girl did not survive. Their marriage also broke up. In such a situation [having a baby with a disability] you make it or break it. I was lucky.

‘We turned to each other for support’ speaks to the lack of social support for people who have disabilities and their caregivers. This theme is emphasized in the disability literature (e.g., Kittay 2001). Circumstances

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made it possible for Tamiza to be in the ‘make it’ scenario. She has family support, but her situation is still compartmentalized. The social services sector addresses the physical needs of her children. Tamiza’s family and community help with their social needs: When I was pregnant with Ayaz [her second son], I was monitored every week. At the same time Faizal was going through tests. So I was struggling with two things at the same time. When I was seven months’ pregnant, the doctors had to drain the fluid from Ayaz’s brain, as they were scared that his eyes would be affected. I had a C section at seven months. When they delivered the baby, I did not see him for five months. When I held my baby the first time it was very hard. He was in the hospital for a long time. He had a couple of surgeries, as they had to make sure that his optic nerve was not damaged by the fluid in the brain. There was one thing after the other.

Monitoring, surgery, eyes, fluid, optic nerve, brain – these are corporeal words. Here, the body is subject to what medical anthropologists refer to as the scientific tradition of reductionism. This tradition assumes that to understand ‘the properties of the whole, we must first consider the units that compose the whole’ (Lock 1993, 370; see also Lock 1998). Such an approach dismisses experiential knowledge as irrelevant. Cultural influences of all kinds are viewed as getting in the way of revealing relevant facts ‘in the depths of the body’ (Lock 1993, 370). Margaret Lock takes issue with this approach at two levels. First, she argues that medical knowledge, while of value, is partial and fragmentary and rests on an abstract plane unconnected to time and space: ‘A person, however, is clearly not an abstract entity, but a conscious being perpetually in a state of change, whose body is the centre of ongoing dynamic interactions among physical and social surroundings’ (ibid., 371). Second, our body insists on meaning rather than existing as a surface to which things are done. The emphasis here is on the body as an active agent, whose engagement with the world does not exclude ‘the very sinew, nerves, and bones of the body’ (ibid.). The biomedical discourse that reduces her children to body parts (‘fluid’ and ‘optic nerve’) is not what Tamiza accepts as her reality. She focuses on social relations: When Ayaz was born, both my husband’s and my own family got together. I have a lot of support from my husband. We have become like

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friends. We laugh and cry together. We share our feelings. We have become very close. My mother quit her job to take care of Ayaz. Faizal was in the day care. But Ayaz needed a lot of care. His head was big. For three months he could not hold his head up and it was so big. I have been very lucky. The children have brought us a lot of happiness and joy. How could I have rejected my own baby [considered abortion]?

Medical anthropologist Byron Good (1994) submits that narratives provide avenues for relating and recounting so as to generate new questions and new perspectives. Tamiza’s attempt to embed the family story into the biomedical framework is important, as it provides her with the space and grounding to deal with multiple issues that she faces as a mother of two children who have disabilities. We may note at the risk of repetition that children who have disabilities do not get the support that is given to normal children. To compound the situation, people who have disabilities are denigrated and devalued on the ground that they are not like Us – they are the Other. For Tamiza familial support gives her the anchor to venture into the outside world: When I had so much family support, I knew that they were behind me and it was easier for me to explore what was out there.

Medical education at Harvard begins with entry into the human body, notes Good (1994; emphasis added). This stance is problematic, as it trains medical students to look at the human body as an object to be skilfully manipulated. Good argues that the inward gaze into the body is out of step with the bodies that we interact with in our everyday life. Tamiza has embodied knowledge of this insight. In her account, Tamiza does not focus on the medical (read: compartmentalized and dehumanized) vocabulary. She emphatically observes that her children are contributing members of society. Tamiza notes that her children have been instrumental in creating a special bond between her natal family and her in-laws, and between herself and her husband. She reiterates the point that her children have as much to teach the community as they have to learn from the community. This is a crucial point, as in the institutional context, people who have disabilities are reduced to being social services consumers who cannot give but only receive. This one-dimensional perspective erases the element of reciprocity, which is the bedrock of social relationships. The demedicalized or alternative model is realized not within the

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discrete entity of the individual body, but within a network of relationships. Hans Reinders (2000), among others, maintains that our social lives are in actual fact our moral lives and that our moral selves develop within the social relationships that we find ourselves to be part of. To accept responsibility for other people, we must regard our own lives in terms of those relationships (Das and Addlakha 2001). This aspect is clearly demonstrated in Tamiza’s story. Advocacy work on the part of subordinate groups requires adoption of a new subject position. This position is of interest to us, as it goes beyond the unit of the individual, who in Western philosophical tradition is unitary and centred, and created out of the binaries of Self-Other and Subject-Object. Rather, this new subject is heterogeneous, as well as political. ‘There are many narratives by women of colour around the world that propose and enact new forms of locating themselves within societies. These forms are both oppositional and non-essentialist, and confront and fracture the self-other opposition in the name of inclusion, multiple identities, and diasporic subject positions’ (Grewal and Kaplan 1994, 2; see also Dyck and Dossa 2007). Tamiza adopts multiple subject positions to advance the interests of her children. Multiple Subject Positions Tamiza is constantly reminded of the multiple ways in which she and her children are excluded from social situations. Within her own community, she notes that she is not free to move around and socialize at events that she attends with her younger son, who uses a wheelchair. She has to wait for people to come to her. Likewise, Tamiza feels that people in general do not know how to approach her children. Their entry and exit points of interaction are confined to ‘Hello’ or ‘How are you?’ exchanges. It is interesting to note that Tamiza’s narrative makes greater reference to service providers than to people in her neighbourhood and the larger community. Service providers tend to focus on instrumental and functional aspects rather than on sociality (Dossa 2005; Kittay 2001). Tamiza seeks to rectify this situation, as illustrated below. First, when Faizal graduated from high school, Tamiza had a party at her house. She invited people who interacted with Faizal on a daily basis: teachers, service providers, bus drivers, and classmates: There were thirty people. Five of them were in wheelchairs. I had a barbe-

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cue and I served the food in my best chinaware. Why should these children not have fun like anyone else?

Second, Tamiza uses the services of a nanny to help her take care of her children. Of interest is her emphasis on how I treat my nanny as a family member. When we go out, I invite her.

Tamiza has always had Filipino nannies, as she thinks that they are reliable and she feels at home with them. Tamiza states that she has given her nannies (she has had several) time off so that they could upgrade their qualifications and settle down in Canada: Even when they want to sponsor their families, I help them fill out the forms and give them letters of support.

Third, when Tamiza has to take time off from work to tend to her children, she lets her employer and co-workers know ‘the real reason’: I can take sick leave and I don’t have to let them know about my children. I am not going to hide my children.

These accounts emphasize one point. Tamiza wishes to establish her children’s presence in the public sphere so that they can be ‘heard’ and ‘seen,’ a conclusion I draw from two questions: How are situations framed? What stories are circulated at particular moments in time and space?3 Political and social issues are invariably at work in how people at the margins frame situations. Tamiza is well aware that graduation parties are not held for youth who have disabilities on the scale and level enjoyed by their able-bodied counterparts. She is determined not to have a party exclusively for ‘the disabled graduates.’ This would lead to their confinement within a discrete and depoliticized sphere where they would be doing their own thing, unnoticed by the larger world. Tamiza brings under one roof people who do not otherwise meet, given the nature of their task-oriented work. The coming together of service providers, educators, and students with disabilities in a party atmosphere is conducive to creating a milieu for social interaction. Here, youth who have disabilities are seen as human beings and not as abnormal bodies to which things are done in a fragmented way. Serv-

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ing food on her best china conveys the message that people who have disabilities have a right to lead normal lives and have fun. In presenting an example of interaction among people who otherwise do not come together socially, Tamiza points to a scenario that should be commonplace. But this is hardly the case. People who have disabilities continue to live segregated lives. Moreover, they are not free from the impact of two practices that disability activists consider dehumanizing: (1) an instrumental focus on the disabled body, as opposed to an interactive and an engaged body; and (2) compartmentalization of services that erases personhood. Tamiza’s seeks to foreground an alternative space of sociality. Filipino nannies and domestic workers are brought into Canada to fill a demand not met by local workers. Working in the unrecognized and unseen private sphere, the nannies are rendered vulnerable. They are underpaid and overworked: long hours of work and reports of sexual harassment are not uncommon. Owing to the threat of deportation, nannies are not free to change their employer for the first two years. They are financially overburdened, as they send remittances to their families who take care of their children (Anderson 2000; Grandea 1996). It is ironic that these nannies look after other children by leaving behind their own children. Furthermore, they are usually obliged to repay a loan borrowed to cover their travel fare to Canada (very high by Filipino standards), while they save money to sponsor family members in the future. This is the context that informs Tamiza’s stance. By treating her nanny as a member of the family, Tamiza conveys the message that a person is more than her role: When it comes to hiring a live-in nanny, I want someone who is caring and kind. I find it hard to find someone like that in Canada. I get a Filipino nanny. But when their contract is up, they want to leave. What I do is sponsor their relatives so they stay. I also make sure that the nanny has a good time, too. When we go out, I take her with me. I give her weekends off. My nanny has a boyfriend. He lives on the island, and when he comes to visit her, we give him the guestroom. We treat him like family.

Tamiza recognizes that, like everyone else, nannies have aspirations. Hence, she assists them to sponsor their families and gives them time off to study. The material pay-off is that the nannies have looked after Tamiza’s children as persons and not merely as children with essentialized disability identities. In short, Tamiza’s reaching out to her nannies is informed by her struggle to ensure that her children’s humanity is

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recognized. She is not able to escape the irony that her children are looked after by women who are structurally disadvantaged and who may have left their own children behind.4 Tamiza was happy that I was interested in her story. She is well aware that her children, like others diagnosed with disabilities, had been rendered socially invisible.5 She tells of how when they visit places where people see them often, people greet them, but beyond that there is no further interaction: They [society] do not know how to address my children. They do not realize that they are human beings like us. They need to learn.

We must note that mainstream Canadians who have disabilities also struggle to access and secure social services. Those who are educated are in a better position to work their way around the bureaucracy. This applies also to racialized minorities. Yet, according to Tamiza, the struggles of these minorities are greater for two reasons. First, there are no services put into place for these individuals; their cultural traditions and structural disadvantages are not taken into account; hence, the mainstream services that they seek may not be easily accessible to them. This is why Tamiza has taken it upon herself to spread the word within her own community. Second, individuals of racialized minorities with disabilities face greater discrimination. To my question on racism, Tamiza responds: Yes, of course, there is discrimination against people of colour and against Muslims. Right now, I have to struggle for my children’s rights to be human.

Tamiza’s stance on acting as an advocate for all people who have disabilities suggests that she does not want to be confined to the scenario: ‘let them fight their own battles but they cannot speak for us [mainstream sector].’ In other words, Tamiza chooses to act as an advocate for all people with disabilities to avoid a position where she is seen to be speaking exclusively for one group. When I ask Tamiza if she would be facing the same issues in her native country of Tanzania, she replies: Over there the issue would be that of resources. I would still have to struggle for people to take them for what they are, ‘good human beings.’ But this struggle would be less.

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While Tamiza does not elaborate on this point, scholars have noted how institutions and legislation govern the lives of people with disabilities in the West through the welfare state. The Welfare State Raising two children with disabilities in an advanced capitalistic system means being part of the welfare state where one is entitled to draw upon resources put into place for people who are not in the labour force. Although the welfare state has instituted a social safety net that benefits people, it has failed to include the issue of entitlement. Its willingness to ‘assist’ is informed by the principle of keeping social unrest at bay: ‘The reforms are, in short, compromises that allow corporations to ameliorate social unrest and to socialize various “costs” of production, and that prevent the otherwise unprincipled degradation of the working classes and nature by capital’ (Teeple 1995, 20). It is of interest to note that the fragmented and compartmentalized funding provided to different groups (disabled, aged, poor, unemployed, and so on) and programs (education, health care, and social services) has been made possible through colonization: ‘Among the effects of this export-led growth was the rapid increase in capital accumulation in the metropolitan countries. In turn these developments allowed for a rise in the general standard of living, enhanced and confirmed the legitimacy of the system, and ultimately made it possible to generate sufficient revenues from “high” wages for the creation of a social wage, the fiscal foundation of modern social reform’ (ibid., 14). The welfare state contains a second contradiction. It assures a minimal standard of living for its own working classes while simultaneously rendering them powerless. This situation comes about because of the division of societal power. The dominant elite grants concessions and gives out goods and services as it has the means to do so; the stratified working classes are only able to negotiate and receive services as and when they are made available to them, even though they are entitled to them as citizens of the nation-state. Stratification within the working classes is not solely determined by economic status. Gender and race are crucial variables. Individuals within these categories have not been accepted as equal citizens. Since the late 1960s nation-states in the West have increasingly relied on the labour force from the global South to fuel their economies. Non-labouring Third World bodies (disabled, aged,

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and those deemed to have health problems) have been kept out of Western countries to ensure that they are not a drain on the system. The welfare state papers over the contradictions where the elite retain the power to grant concessions on a discretionary basis. The subordination of the stratified working classes at home occurs in conjunction with the subjugation of colonized people abroad. This dynamic is reminiscent of the subordination of Western women, who are continually given the message that they are liberated in comparison with women from the developing world (Thobani 2007). The irony is that Western feminists have bought into this discourse, undermining their own work on the home front. It is for this reason that Western feminists do not substantively connect with non-Western women on an equal footing. The image of non-Western women being saved by Western women and men has become deeply entrenched in the psyches of Western societies (Ong 1995b). The context provided above helps us to define Tamiza’s structural position in Canadian society. Tamiza came to Canada in the early 1970s, a time of post–Second World War boom. There was a demand for women’s labour in the lower levels of the service sector and in manufacturing plants. Tamiza fitted well into the service sector. It was only when she had to raise two children who have special needs that she sought social assistance. This involved struggle and hard work. There are a lot of good programs inside this country and nobody is getting handed them out. You have to find out about these programs, and apply for these programs and make sure that as a taxpayer it is your right. You should not be made to feel guilty that it is taxpayers’ money. You should not be told that you should not be doing this [spending taxpayers’ money] but that you should be doing this on your own. You can’t because there are a lot of major expenses you are looking at, and you need assistance. You should not be ashamed to ask for it. But nobody is going to tell you for sure that ‘look this program is available and your child might be entitled to it.’

Tamiza reiterates two intertwined issues: (1) entitlement to programs and (2) the inaccessibility of programs. She recognizes that some good programs are in place but that people do not know of their existence.

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Racialized Bodies, Disabling Worlds I really worked for it. I have said it is not fair to dump a child on somebody and say it is your responsibility, and you are on your own. I don’t think it is fair. I think that the social worker or somebody else in social services should come and sit with you and [tell you] what is available and what you need. And if you want to get in touch with us this is the way you apply for it. Because the parents go through so much, so much to deal with. The last thing they want is to worry. Apply for this home, fill out this application, go and see this person. You feel you are begging. They put a lot of stress on you. I want to give this message. There should be more information available to know what is out there.

The onus, then, is on the consumer to identify the programs and secure them. As Tamiza says: You just have to be aware and very assertive and just ask for them.

The empirical issue of accessibility is linked to entitlements. Tamiza’s experience indicates that she is made to feel guilty for using taxpayers’ money, notwithstanding that Tamiza worked for eight years before she had children and that she returned to the workforce after she found day care arrangements for her children. She and her husband are both taxpayers.6 Having named the discourse, Tamiza takes it upon herself to correct it. She identifies herself not as a racialized caregiver but as a taxpayer, and says: You have to make sure that, as a taxpayer, it is your right to ask for services.

Reiterating this point, Tamiza provides a context for the kinds of costs involved in raising children who have disabilities. The extra expenses she lists include physiotherapy, diapers, feeding tubes, and baby formula. Elaborating on the latter she says: Formula costs $3 a can. You are looking at $12 a day just for formula.

She also gives the example of how much it would cost the government to provide child care: ‘$20,000 to $30,000 per year.’

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Tamiza does not think that she is sitting back and relying upon social services, although she considers this to be her right as a citizen and as a taxpayer. She stated that her own family has always been by her side. Her mother quit her job when Faizal was born, and her sister provided a lot of help. Tamiza herself put in a lot of work to look for a suitable home for her children. The family moved to Delta, as it has flat land. [And] this place has good services in place. In fact, people come from outside [other provinces] to live here just because of its services.

The couple declined to disclose their income on the grounds that these questions are not asked of parents who have able-bodied children: For at-home services they want to know your income. I said this is not right. You don’t ask for the income of parents with normal children.

As a result they received fewer hours of care (8 rather than 12) when their children were living at home. We may note that there are two other reasons Tamiza has been able to secure services for her children. First, both of her children have been given clearly defined medical diagnoses, and these form the basis for social services decisions, such is the power of biomedicine. As stated earlier, medical diagnoses inscribe a disability identity on bodies, the worst aspect of which is that it is all-encompassing. People who have disabilities are then compelled to engage in the paradox of adopting this medicalized identity in order to receive services and then reconfiguring it so that they can live as persons: I want my children to be happy. Like everyone else, I want them to get up in the morning and look forward to life and to find meaning in life.

Second, getting her children into school and social services in their early years has given Tamiza a cutting edge: Once they are in the system, they can’t keep them out. They know my children have needs.

Over the years (her children are now 17 and 18), Tamiza has learned, as she says, ‘how the system works and how to negotiate with it.’

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Tamiza feels that she and her children are short-changed in relation to social interactions. She notes that her children are actively engaged in programs that are fantastic and keep them very busy. I have to wait until the evening before I can talk to them.

But this is their world of doing (activities) and not being. The latter aspect is brought into relief within her community. Tamiza takes her children to the mosque every weekend when the family participates in worship and ritual. Here, solidarity and oneheartedness are affirmed through ritual performances and prayers, and not through language-bound thought and explanations (Dossa 1999). There are limitations, however. Tamiza notes that her community’s accommodation of her children has been partial: The community is very protective of my children. If someone tells them off and treats them harshly, they intervene and do not tolerate any mistreatment of my children. And if they miss a weekend, they ask why we did not bring them.

But Tamiza claims that there is more work to be done, and gives two examples. First: No one comes to me after the prayers are over and says, ‘Why don’t you go and socialize with the crowd and we will take care of the children.’

Second, she feels that her son’s volunteer work should be recognized: He serves water, he picks up the garbage, and it would be nice if he was to be given an award.

Tamiza notes how Faizal is on top of things: He does not allow me to park in the handicap spot when Ayaz is not with us, whether we are in the mosque or in a shopping mall.

Faizal’s refusal to wear an essentialized disability identity is telling. Priestley (1999) shows how children who have disabilities, as social actors, work out ways of placing themselves within and without the

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discursive categories of ‘disability’ and ‘special need.’ Rarely do these children use a reified category: disabled or non-disabled. ‘They may assume disability identity to overcome societal barriers, and once these are overcome, they switch over to other more flexible identities’ (Priestley 1999, 99; see also Billington 2006). Through Faizal, Tamiza gives her Muslim faith a public presence. She is motivated by one major factor: she believes that her heritage will impart an identity to her children that goes beyond that of disability as a master status. Tamiza believes that her faith, anchored in history and oriented towards everyday life (through practice and embodiment), will give social recognition to her children. When Faizal observes his prayers in the evenings and invokes Islamic phrases during the course of his day, he arouses the interest of the people around him: Service providers often ask me what is the meaning of the phrase that Faizal uses. I explain to them in a simple way so that they understand.

It means a lot to Tamiza that her children, in small but incremental ways, are making her religion visible. Its import can be gleaned from Tariq Modood’s observation that ‘a hundred years ago, the African American theorist W.E.B. Du Bois predicted that the twentieth century would be the century of the colour line; today we seem to be set for the century of the Islam-West line’ (2005b, xii). Within her Muslim community, Tamiza engages in advocacy work. Her goal is to make the community recognize and valorize difference. Tamiza’s repeated observation that her children have much to ‘teach the community, as much as they have to learn from it,’ is made in the context of deconstructing the parameters of normality in favour of a model that recognizes differing abilities. Tamiza’s attempts to give a public presence to Islam and render it more inclusive are a way of creating new spaces where she can claim her children’s humanity and that of others. Concluding Note The core issue addressed in this chapter is to show how Tamiza speaks to identify the fault lines of the system and the social services sector, and to suggest avenues for change. Of particular interest is the narrative strategy that Tamiza uses to share with the listener/reader her experiential knowledge of the system. We note that in the beginning she had

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had no exposure to children with disabilities, a situation brought about by structural factors: the social invisibility of people with disabilities and Canada’s exclusionary immigration policy that does not recognize persons with disabilities as potential migrants or wage earners. Early on Tamiza discovered that she had to learn to negotiate the system on her own. She presents herself as a protagonist, a position that marginalized women adopt so that they can be heard, such is their silencing in society (Dossa 2004; Ray 1996; Ross 2001). Tamiza aims to know the system inside out, once she realizes that it is structured to remain out of the reach of people: Nobody, not even your doctor, will tell you that such and such a service is available. You have to find this out on your own.

Tamiza spends a lot of energy and time to ensure that her children have the best of what is available; she acknowledges that her children were able to get into the system because they started early in life. Other factors at work were that both Faizal and Ayaz have well-defined medical diagnoses and that Tamiza is fluent in English. Growing up in colonized Tanzania, she was able to familiarize herself with ‘how things work in the West.’ Although Tamiza feels that she has been able to secure social services to her satisfaction, she is not content. Her source of dissatisfaction arises from the fact that service provision comes with a price: services are given to her as charity, and their task-oriented focus dehumanizes her children. Tamiza wages a second battle: she presents herself and her husband as taxpayers, making the argument that social services are entitlements. In terms of praxis (she acts and reflects), Tamiza describes scenarios that address structural issues, and she explores political possibilities. Tamiza adopts multiple roles: she is a citizen, a mother, a waged worker, an advocate, and a Muslim. The latter role is revealed in the way her children claim a public space to practise Islam, bringing to light an aspect of their lives that the public does not otherwise see or hear about. Tamiza’s critique of the system – inaccessible, dehumanizing, taskoriented – does not mean that she does not appreciate the services. The services have made it possible for her children to attend programs, and it is Tamiza’s hope that Faizal will be able to do some kind

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of waged work like cleaning or collecting dishes from the tables in a restaurant. Tamiza does not look at her own community with nostalgia. Tamiza brings into view her embodied experiences and reflects on the space that the community has given to her children. Faizal is a volunteer, and through his experiences his mother is able to talk about the principle of reciprocity. She is happy that the community protects her children and inquires if they are not present during the evening weekend worship. But Tamiza feels that her children are accommodated within the existing space. The community has not as yet made any structural changes to include her children in a way that validates their difference. Her account of the use of disabled parking is revealing, as it shows how Faizal identifies himself: he may be ‘disabled’ but this need not be a totalizing and all-encompassing framework for those who are different. In her narrative, Tamiza keeps in the forefront the aspect of being human.7 She takes issue with her sons having to adopt a totalizing disability identity to secure social services. Tamiza brings home the point that consuming task-oriented services (programs and activities) compromises the humanity of her children. They do things, but people are largely absent in their social landscape. The social services sector has accommodated difference, but at the cost of dehumanizing her children and compartmentalizing their lives; her community recognizes their humanity (her children are members of the congregation) without accommodating their difference. Tamiza locates her narrative in between these spaces, suggesting that the bridge can be crossed through a context-specific language of humanity and entitlements – demedicalized space. From this space we might acquire a different view of life, one where we learn there are different ways of being. Tamiza’s efforts to bring together people from different walks of life are motivated by her belief that people who have disabilities are not merely the recipients of services: They have much to teach us ... They are humans like us ... I want my children to be recognized as people. I want them to be happy. Like everyone else, I want them to get up in the morning and look forward to life and to find meaning in life.

4 Writing Dislocation: Telling Her-story1

To reconstitute events in a story is no longer to live those events in passivity, but to actively rework them, both in dialogue with others and within one’s own imagination. (Jackson 2006, 15)

Storytelling has come of age.2 The appeal of the genre lies in its capacity to bring into relief subjugated knowledge and to suggest progressive change. The stories that we listen to are increasingly those of pain, suffering, and the violation of human rights. We can then consider two relevant questions: How do we listen to stories, as opposed to merely hearing them, and how do we map the complex strands of the local worlds where stories have their roots? Nancy Scheper-Hughes, for example, argues that if we recognize that stories are ‘produced in human interaction, not merely “extracted” from naïve informants’ (1992, 25), then we will see ‘the diseased tissues of the social body gone awry’ (ibid., 26). The interactive element of storytelling is captured by Gelya Frank (2000). In reporting her fieldwork of two decades, Frank depicts her first encounter with Diane, an American woman born without limbs, and describes it as casting her gaze on the Other. When she listens to Diane’s story, Frank realizes that they share a common goal. The gaze gives way to reciprocity: ‘We were both also engaged, respectively, with the disability rights movement and a movement in anthropology to recognize more fully the interests and voices of the often disempowered people whose lives were studied’ (2000, 8). Frank highlights the importance of active listening, fostered through the deconstruction of unexamined assumptions and prejudices. Storytelling can be a liberating experience, as it is one venue through which a

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person can express herself in her own terms and reconstruct her life/ her-story in the act of telling. Writing on Chinese women in the diaspora, Aihwa Ong highlights the importance of reciprocity and active listening. Focusing on gender and race, she notes the compounded marginalization of racialized women. Ong takes issue with unequal relations of power, whereby ‘Third World women’s stories become the means for western feminists to participate in different translinguistic forums, thus extending their academic authority to transnational contexts’ (1995a, 353). Yet, for Ong the greater betrayal results from our failure to disseminate their (nonWestern women’s) stories. She cites two reasons for paying greater attention to stories. First, it is through the global circulation of stories that we can highlight ‘alternative circuits of discursive power’ (ibid.), and second, stories are expressions of women’s struggles towards a particular consciousness about the world in which they live. It is the researcher’s responsibility to circulate the stories while minimizing the process of appropriation, a point elaborated in my work, Politics and Poetics of Migration: Narratives of Iranian Women from the Diaspora (2004). There I emphasize the need to recognize research participants as producers of context-specific knowledge. Marginalized people, I argue, use stories and body language to reveal their subjugation. Using the example of refugee and immigrant women from Iran, I show that women have a lot to say on what it is like to be displaced and to have one’s mental health compromised. Their stories speak to the larger issues that implicate society while fostering a conversation on social justice. We must therefore position ourselves to listen actively so that we can speak with them rather than for them. The above discussion brings home the point that storytelling is not merely about capturing the voices of the Other. Narrators reconstitute and remake their worlds. This explains why all our participants welcomed the opportunity to tell their stories in their own terms and in the language of their choice, including silence, body language, and testimony. Furthermore, the narrators spoke as a cohort, with a commonality of experience based on a shared history of marginalization. Commenting on the first wave of South Asian migrants stepping into the new world of colonies, Shyam Selvadurai identifies two shared moments: ‘The first such commonality was that moment when the labourers climbed out of the boats that had brought them to shore and waded through knee-deep water to the new land’ (2004, 9). The second moment was reconstituting the food rations into the cuisine of dhal-puri

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(legume and Indian bread). Note human agency at work: the rations became part of their culinary history. Many people can speak through the voice of one person, a point made explicit by Arthur Frank (1995). Stories include the polyphony of other voices. Their collective speaking evokes the attention of a listener/reader, linking areas that otherwise remain unconnected. In this chapter, I focus on Firouzeh’s story. I argue that ordinary women author their stories to claim their voice. My goal is to explore the vantage points that link a particular story to a collective situation shared by others. Firouzeh invokes this scenario by speaking in a multistranded testimonial voice. There are three parts to her story: (1) her life in Iran and telling her-story; (2) migration and a ruptured landscape; and (3) resettlement in Canada. Dislocation is the linking thread. Each part is told in a way that allows Firouzeh to raise particular social issues. While I have drawn from the literature to bring forth insights from anthropology and other disciplines, I have done so in relation to the content that Firouzeh herself brings into relief. Telling Her-story I was coming home from school when a car was reversing and hit my right leg. I did not feel anything at that moment, and I just went home. I told my Mom what had happened. I had my dinner and I slept through the night. But from the next day, I could not walk. My parents were not poor but they had not many resources, like a car. However, my Mom took me to a doctor who said that my leg’s nerve system was damaged and I should go to the hospital in Tehran to be examined closer.

In her account, Firouzeh reveals the contours of everyday life, going to school, eating dinner, and going to sleep: social reality that we do not question unless it is subject to disruption. What we might consider to be discrete phenomena are embedded in socioeconomic and political contexts. The challenge is to establish connections between the lived reality and the system. This is not an easy task, as the system does not acknowledge its complicity in putting into place ideologies and practices that systematically disadvantage people on the margins. Firouzeh’s marginal location comes to light at the time of the accident. The rural residence of her family means that she does not have access to the infrastructure of urban-based services, a consequence of the Western

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model of development. Although Iran was not formally colonized, it has been subject to long-standing Western intervention owing to the country’s rich oil resources (Keddie and Matthee 2002). That there was a hospital in the city and not in Firouzeh’s fishing village is paradoxical: not only are rural people, a majority in Iran compared with their urban counterparts, deprived of the ‘benefits’ of development, but they are internally displaced (Escobar 1995). Development projects undermine rural people’s subsistence base. Hence, at the time of the accident, Firouzeh’s family was merely surviving. To add insult to injury, rural people are constructed as backward and traditional and therefore in need of development (read: foreign intervention).3 This larger context of lack explains why Firouzeh had to go to Tehran for treatment. This necessity was not without serious consequences. Delay in getting to the hospital worsened Firouzeh’s condition. Once in the hospital, her recovery was compromised because of geographical distance. Over her two-year stay, My parents could only come once every six months. Doctors and nurses were my visitors. I had to stay in the hospital as we were far from the countryside, so they did not have the budget to bring me back and forth.

Soon after returning to her home town, Firouzeh fell down. She reinjured her leg. My parents again took me to that hospital after a year because I had lots of pain. My dad rented a car and drove me to Tehran. During the surgery I was given too much anaesthetic and I went into shock. I was allergic to the anaesthetic and doctors gave me too much of the shot. And my body did not tolerate it. I went into a coma for a year and a half. I did not feel anything. I do not remember. But I was in a coma and again I became a member of that hospital. When I came back from the long time in a coma, I did not know anyone. I do not recall anything from how I got back or what happened. I only heard later that the nurses and doctors at the hospital were my only visitors. I guess my parents did not hope that I would survive because I was a burden. My mother had faith. She knew that I would live. After I came out of the coma, the doctors helped me a lot, and they tried many types of treatment for me. Lots of pills and lots of pain and lots of tears are my only memory from that time.

Activists and scholars have informed us that impairment of one’s

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physical condition is compounded by societal rejection of anyone who is unlikely to ‘recover.’ Our collective inability to accept people with different ways of being in the world has led to social marginalization that amounts to nothing less than violation of their human rights. Biomedicine, in concert with capitalism, has laid out the contours of the paradigmatic citizen: one who is able-bodied, white, young, and male. People who fall short of these criteria have to work their way through a system that deems them to be ‘abnormal.’ Gender, age, race, disability, and social class are markers of difference, hierarchically organized. For Firouzeh, her disability and gender ‘difference’ translated into a scenario of rejection that cannot be exclusively attributed to culture, as conventional approaches would suggest (Jiwani 2001).4 Although Firouzeh lived in Iran in a remote fishing village, the trajectory of her life was dictated by Western capitalism, whose growth and development have been made possible by the colonization of other lands (Bannerji 1995; Thobani 2007). At the time of Firouzeh’s birth, in the 1950s, Iran was in the grip of foreign powers (notably, Britain and the United States) interested in securing its oil, the mainstay of capitalism. Foreign powers procured Iran’s rich resource through modernization, namely, the construction of an urban-based infrastructure serving the interests of foreigners and the indigenous elite. Writing about transformations in twentieth-century Iran, Zohreh Sullivan cites the example of Iranian boarding school girls tied with their chadors (veils) to their bunk beds to prevent them from falling off. Sullivan finds that this action, ‘the image of the woman bound to her bed with her veil in the larger cause of progressive rights and freedoms, a paradox of modernity, captures the simultaneity of modernity and its [dark] underside’ (1998, 224). Consider Grant Farr’s observation on the Shah’s thirty-eight-year reign: ‘Thousands of Iranians would travel overseas each year, particularly to the United States, to study, and thousands of foreigners, many of them Americans, would live in Iran as advisers, teachers and businessmen during these 38 years. Tehran would become a modern city’ (1999, 26). The mobility that the people of Iran enjoyed was class based. The wealthy travelled and others were internally displaced – such is the power of uneven and top-down modernization combined with development. Firouzeh’s story of her life trajectory may best be understood in this context. An exclusive focus on the cross-cultural model of disability is misguided. In that approach, the origin of stigma is traced to the culture

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of a particular society rather than to socioeconomic and political factors. The connection between structural factors and individual experiences is masked by a social environment where spatial configurations and norms and practices implicate the individual body for its inability to survive and adapt to an increasingly narrow definition of ‘the normal’ (Stiker 1999). Anthropologists have cautioned us not to dismiss the local where life is woven into an intricate pattern. It is here that everyday life, pregnant with meanings and possibilities, unfolds to reveal the workings of state power. It is also at the site of the local that communities are created and sustained to foster ‘interconnectedness and mobility across spaces’ (Ong 1999, 8). Political and economic factors are embedded in the lived reality of the everyday, a point reinforced by Ong: ‘I argue that an anthropology of the present should analyze people’s everyday actions as a form of cultural politics embedded in specific power contexts’ (ibid.). Veena Das and Arthur Kleinman remind us that people whose lives have been subject to disruption endeavour to secure their everyday life; this involves not merely survival but engagement with ‘the material, moral and social aspects of everyday life’ (2001, 4). In this context I want to look at the small but significant steps that Firouzeh took to remake her world in a socially significant way. Not wanting to remain a passive victim of circumstances, Firouzeh decided to take matters into her own hands, one step at a time. First, she took up the occupation that was most readily available to her: sewing. This activity served two purposes: (1) sewing helped Firouzeh earn some money, and (2) sewing was therapeutic: When I came back home, I had to control my shaking hands so I tried to learn sewing in order to control my hands. I wanted to learn sewing.

Reflecting on the experience of teaching herself to stitch and later embroider, Firouzeh tells us: It was hard but I tried to help myself. I felt somehow that it was up to me to help myself [financially]; otherwise I would be a burden on my family.

It is important to note how Firouzeh blurs the boundary between therapy and work, otherwise considered to be separate. In the process, she reaffirms her role as a daughter, sister, and worker – a role that had been diminished following her accident.

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Firouzeh’s second step came about during the visit of a family friend from Tehran. This friend suggested that she could go to Tehran and work in a clothing factory. Firouzeh jumped at what she saw as an opportunity, despite opposition from her father and her brother: I left my parents’ home because I could not take it anymore.

She adds: I felt that I am pretty and my brain worked. Only my legs did not work so I tolerated all the hardships hoping that life would be better one day.

Firouzeh was 19 years old, and when she left home her parents made her sign a paper saying that they were not responsible for her anymore: After a big fight, my parents eventually agreed to let me go and work in a clothing factory. I lived with this family [friend] and I sewed clothes for this factory. During evening time, I tried to read a newspaper although I had studied only until Grade 6. In one advertisement, it said that a clinic for disabled people needed a teacher for sewing and handcrafts. I became so excited that I cried. The whole night I prayed to God to let me get that job and find some friends. I was very lonely. I sat all day in front of an old sewing machine.

No one took notice of Firouzeh in the factory where she worked. She was merely ‘a pair of hands,’ and her worth was measured by what she produced. But she never allowed herself to feel completely alone. She says that God was her companion and that it was her faith in God that made it possible for her to survive and to hope for a better future: I always imagined God to be by my side.5

Firouzeh found it tiring to commute between her home and place of work. She applied for a place in residence and was accepted. Here she met her husband. Marriage made it possible for Firouzeh to build a new life. It was she who repeatedly told her husband: Just because we have lost the use of our legs, this does not mean that we do not have brains. This should not mean that we should be left aside by society.6

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The wedding was a momentous event. ‘We were the first couple to be married in wheelchairs.’ Her parents attended the wedding: My parents cried a lot and held me fast and wished me good life. They spent a few days with us. We had a little place for ourselves and we were happy.

Firouzeh was proud to see her wedding picture in the newspaper. The couple set an example for other persons with disabilities that marriage was not out of bounds. Firouzeh’s husband Hosein had a job with a telephone company. They had four children, all boys. I gave birth to my first son, who is twenty-seven years old now. He was born at Princess Farah’s hospital. I could not give birth in a regular way. I had a Caesarean. My uterus is too small due to many years in a wheelchair. Anyway, I did not have any anaesthetic this time. I just had a shot and I was awake.

Firouzeh tells how she and her husband took care of their sons. Of course it was not easy. My husband made notes on what time the baby should have my breasts and what time to be changed. I could come down from the wheelchair and change the baby and then up on the wheelchair again to wash clothes or take care of things. I loved my son and my husband did the same. We both took care of him. We raised our children like other people who are not on wheelchairs. We raised all our kids with love.

Firouzeh’s account of particular incidents is telling. She relates how she would put her children on her lap when she went to the hospital for their vaccination. She used a taxi to take her children to school, begging the driver to put her wheelchair in the trunk. During times when she took the bus, Firouzeh would ask some nice guys to carry my wheelchair into the bus and out again. You know how hard it is.

Other than her husband, Firouzeh had no help. ‘We did not have many resources, but we managed to do things.’ What is satisfying to

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Firouzeh is that her children were happy and that ‘they never felt ashamed of having disabled parents.’ Firouzeh’s use of the wheelchair as a stroller, her extended use of the taxi (to include her wheelchair), and seeking help from ‘the nice guys’ to manoeuvre travel show her creativity and resourcefulness to get around and thereby use public spaces that would otherwise be inaccessible to her. These are also acts of reconstitution of space and embodiment. Through her reconstitution of space, in small but not insignificant ways, Firouzeh presents herself as woman who is a mother, not as a woman with disabilities, rejecting the image that society readily engraves on bodies of people it considers to be not like Us. Firouzeh spent fifty years of her life in Iran. During this time, she reconstituted her identity so as not to bear the essentialized label of disability. She considered herself a person who had lost the use of her legs but not her brains. Firouzeh’s work in creating social space for herself and her family can be illustrated through another marker of difference: age. In their studies on aging in India, Lawrence Cohen (1998) and Sarah Lamb (2000) both emphasize the point that aging is a generational matter, enmeshed in familial interdependence. Both authors take issue with the fact that we have come to associate aging with disease and consider age to be a social burden. This stance ‘isolates the body of the old person and denies her subjectivity’ (Cohen 1998, 331). Underpinning these authors’ work is a concern with the Western/Eurocentric orientation that atomizes aging, including disability, thereby muting the fact that social interdependence is what makes us human. Lamb (2000) argues that aging is a dynamic and fluid phenomenon intimately connected with social relationships. In this context, the social boundaries between older and younger bodies (also disabled and able-bodied) do not hold. When we ask what it is like to be a woman in a particular society, what it is like to age contextually, and what it is like to live with a different body, we generate a politicized understanding of social issues. Then, a relevant question becomes: What is it like to be a person in a community as opposed to what is it like to be a person with disabilities? Firouzeh’s sense of being part of a community is what enables her to avail herself of the opportunities that come her way. Her ingenuity, resourcefulness, and belief in herself led her to assume the roles of mother and wife. As we learn from her narrative, it is not the ‘done thing’ for parents who use wheelchairs to raise four children. Firouzeh does not

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underestimate this social reality. She analyses her own situation and says that her marriage was successful because she and her husband worked together and believed in themselves. Her husband’s waged work made a difference. Firouzeh takes enormous pride in knowing not only that she has survived but also that she has brought happiness to her children: My life is beautiful and I am happy that I raised four children who are also happy.

Firouzeh’s accomplishments and her refusal to wear the label of disability as the sole marker of her identity may be explained by the fact that she lived in a familiar social environment. She knew how to capitalize on what was available to her and what sources to tap if she found herself in a dire situation. She talks about how when she and her children needed a change, she would visit her family – even though they had rejected her. Her neighbours noticed her and would admire her courage, but they were not actively involved in her life. For this reason Firouzeh had to ask for assistance, especially when she had to move around with her children. Such is the ambiguity surrounding persons who have disabilities. They are not fully accepted into the life of a community. Let us consider the next stage in Firouzeh’s life. Ruptured Landscapes: The Political Economy of Migration A major change occurred in Firouzeh’s life when Hosein joined a global team for athletes with disabilities. On the Canadian leg of his journey, he applied for and was granted refugee status, in 1995. Following his move, Firouzeh took care of the children, using her husband’s savings and some money earned by herself and her eldest son. After eight years, Hosein sponsored his family to come to Canada. His application was stalled, as he did not have waged work, but it was ultimately approved on compassionate grounds. In Firouzeh’s words: Once they phoned me from a doctor’s office in Tehran. They said that I had to go through a medical examination for my application and our immigration papers were there. We could choose to either do the examination there or somewhere else. Anyhow, we received the forms, and my son took them to some lady and she did not fill them out properly. The Canadian embassy sent those forms back and again we went to a

102 Racialized Bodies, Disabling Worlds translation office and paid a huge amount of money to fill out those forms. We did the examination in a doctor’s clinic, and afterwards the doctor was supposed to send the forms and his medical report to them. He asked me whether I could pay 3,000 toman [Iranian currency] to send them with special delivery or 2,000 toman with regular delivery. I did not have the money, so he sent them by regular mail but it took a long time and our forms had expired. Again we received the forms to do the same medical. By that time, my elder son had become 21 years old, and so he was excluded from the application. This time me and my three sons did the medical.

Paperwork has become an integral part of our reality. It is a medium used by the state to monitor and police people, internally and on the borders. The heavy hand of this process is felt strongly by people on the margins of society (Das and Poole 2004). Consider Firouzeh’s case. Firouzeh was a woman taking care of four children from a wheelchair, a situation that society does not endorse or support in practice, rendering her socially vulnerable. Likewise, for the Canadian state, Firouzeh is not a desirable migrant. She is not perceived to be part of the landscape of waged work. This explains why her application is not taken seriously. The time lapse in the application process disqualified her eldest son (by then above the age limit) and worked against her second son (by then in the military). While she was waiting to get her visa, he was drafted into the Iranian military for three months because he had ‘disabled’ parents. Her visa came through while he was in the army. To her dismay, Firouzeh discovered that the expiry date was in five days ‘because our papers were kept for such a long time in the embassy in Tehran.’ Someone from the embassy asked Firouzeh to go to Syria for an interview. I said, ‘Why, I cannot go to Syria. I do not have the money to get there.’ I did not show the papers to my sons. I just took them back to the embassy. I told them we are not able to go to Syria. She said, ‘Okay, if you cannot go, return the visa to us.’ I said, ‘No, I need to know what to do.’ She said, ‘You have to do your interview in Syria.’ Anyhow, we came back home.

Firouzeh borrowed one million toman (Iranian currency) from a friend and went to Syria with her two younger sons. When she arrived there, it was a public holiday of which she had had no prior knowledge. She and her sons had to spend two days in a hotel

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paying all the money to the hotel and on the third day, we got to the embassy. They looked at the papers and they said, ‘No. Whoever told you to come here is wrong. These papers are your visas, and you do not have to do any interview. Go back to Iran and you should go to Canada. Your visa will expire soon.’

Firouzeh was shocked and could not believe that she went to Syria for no reason. She told the embassy that she would go to Canada, provided they extended the visa for her second son who was still in the army. They promised to keep his file open: I signed a paper, and gave the paper to them. So we left the paper and came back. But unfortunately when my son was done with his army two months later and got to Syria to take his visa, they said, ‘No there are no papers here for you and you have to apply for yourself.’ He was so depressed, and he came back to Tehran with nothing [no visas].

When Firouzeh returned to Tehran, she realized that she had two days to leave for Canada. She had no money for the air tickets. Firouzeh turned to her friend, a father figure, who had helped her to move out of her parents’ home: I phoned him and said, ‘Father, I need help.’ He arranged for three tickets through a travel agent.

Accompanied by her two sons, Firouzeh left for Canada. Within three months, her eldest son had sold their home at a loss and repaid the loan. The house was worth 28 million toman; it was sold for 15 million. Firouzeh is very sad that her elder sons could not migrate with her. She thinks that their applications will not be approved, as they do not have the right ‘qualifications’ – they are tradesmen. Meanwhile, years go by. I waited a long time to join my husband. Now, how can I wait for my sons? How much should I wait? I am a woman, a mother. I have emotions. It is hard for me.

The screening of who gets in or crosses the border into Canada has been well critiqued (Jiwani 2006; Lee and Lutz 2005; Thobani 2007). Less understood is the manner in which undesirable immigrants and refugees are targeted at the source. As a woman with disabilities, Firouzeh

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did not come close to meeting the labour market criteria applied to the selection of refugees and immigrants. This is despite the fact that refugees are to be admitted on humanitarian grounds. When I posed the question to Iranian and Afghan refugee women as to why their applications were successful among thousands who are in refugee camps, they would reply along the following lines: ‘It is because my husband speaks English and has the skills that Canada needs.’ Note the emphasis on males; women do not count, as they are not considered to be breadwinners. The flow of refugees has increased worldwide owing to the militarization of the world in concert with global capitalism, adversely impacting the non-Western world. The United Nations Convention and Protocol on Refugees requires that people, fleeing from persecution and economic displacement, be granted refugee status by countries that are signatories to it. But ‘governments across Europe and North America have sought to control entry and thus circumvent the spirit of the United Nations Convention while formally complying with the policy’ (Creese 1992, 126; Razack 1998). Administrative backlog, long delays, withholding rights-based information, and failure to translate complicated procedures into layperson’s language are some of the stalling techniques deployed to keep out undesirable immigrants and refugees. This has been Firouzeh’s experience. Another barrier is the unequal distribution of embassy resources. Countries that do not meet the geopolitical agenda of the Canadian state have fewer embassies and they are understaffed. Countries that have citizens with desirable skills, including language competency in English or French, are given high priority. Ironically, many of these countries are former colonies. Middle East countries have a low priority. The demonization of Islam in the West has contributed to the trend of discouraging immigrants from this part of the world (Abbas 2005; Abu-Lughod 2002). These contextual factors explain why Firouzeh did not have embassy staff to assist her with her application. If the immigration official had listened to her story, he or she would have recognized her as a person, not exclusively as a woman who has a disability. Firouzeh raised four children, literally from a wheelchair, and single-handedly nurtured them for eight years. She undertook waged work (sewing) to supplement her family’s income. Contrary to conventional understanding, Firouzeh proves that becoming a mother and a wife is not beyond the reach of a woman with disabilities. On the North American scene, Adrienne Fine and Michelle Asch cite the example of a 35-year-old disabled woman:

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‘Each time I announced I was pregnant, everyone in the family looked shocked, dropped their forks at the dinner table – not exactly a celebration’ (1988, 12). They note that societal barriers make it difficult for women with disabilities to marry, and once married, they are more likely to divorce than their non-disabled counterparts (see also Status of Women Canada 2001). Firouzeh does not let her negative experiences at the embassy ‘go to waste.’ She reframes the embassy incident, using a conversational mode. Firouzeh presents herself as a person who ‘runs’ around – goes to the bank, makes a trip to Syria, gets her tickets through the help of her ‘father’ – poignantly brought home by the fact that she is a wheelchair user. The embassy staff are profiled as people who spell out the rules, even if they turn out to be incorrect. They give her the ‘ultimatum’: ‘leave now or forsake your visas.’ Their unhelpful and bureaucratic stance results in major losses: financial (house sale) and familial (separation from children). The reframing of the embassy incident allows Firouzeh to ‘escape from the stasis of the text into the lived actuality where discourse, like any other speech genre, belongs to a sphere of activity’ (Smith 1999, 148). What comes to light is a voice that is active and immediate: ‘No I cannot do that [give up my visas].’ It is this voice that Firouzeh keeps alive as she relates her story of migration and resettlement. Migration and Resettlement When I arrived in Vancouver, Hosein came to the airport with an elderly Canadian couple to pick us up. They told me that Hosein is their ‘son,’ and they were nice to him and to us. I had fantasized for myself and wished that my husband would come to meet me at the airport with a bouquet of flowers. We were separated for eight years. But he was very relaxed. I was in shock and massive emotional state, but he did not kiss me or hug me. Anyhow, I kissed him, hugged him and cried. We went to a car and then to my husband’s home. It was a building in West Vancouver, where the elderly couple also lived. They took us to their apartment, where they had prepared dinner. I saw that Hosein did not care that much for me.

Hosein was living a simple life. He had a single bed that he had made himself. He had a small dining table, a few plates, some cutlery, sports

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stuff, and that was it. Firouzeh was disappointed at his scant belongings, as she had heard that persons with disabilities were well looked after in Canada.7 When Firouzeh told him her embassy story, he did not react: There was no kiss, no hug. I thought, ‘All right Firouzeh, you have not been with him for eight years. Give him some time.’ We slept that night on the same bed but nothing happened.

The next day Firouzeh cleaned the house and made breakfast, and I asked him what he wanted for lunch. He had filled the refrigerator with food so I started right away to cook.

Firouzeh did all the household work and the four of them lived in the bachelor suite for three months. Hosein had applied to the government (B.C. Housing) for a bigger place, but there was no response. Firouzeh points out that his accomplishment as a marathon runner is recorded in the Guinness Book of Records. The situation was not good: One day I was very depressed. During my daily prayers to God, I begged God to help us, and I promised God that I will say 14,000 salwats [special prayer]. During the two days, I said 13,000 salwats and held 1,000 hostage. So that afternoon of the second day, they phoned and asked us to come and see the place.

It was a basement suite near a school. Firouzeh offered the rest of the prayers once the family moved in. We moved to that basement suite, and after a while I talked to my husband. I asked him why he was so cold to me. ‘You do not talk to me or take me out or say nothing to me. What is happening? What has happened to you?’ He said: ‘I have changed. Give me time. You were not here for eight years, and I am without emotion to everything.’ This was hard on me. I cried for a few days. I could not hear this. Why after twenty-seven years of marriage he would say this to me. It was hard on me. But I tried to talk to him. He would say, ‘Leave me alone. Let me be as I am.’

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In Iran, the couple used to go shopping together, and they ate out quite often. Sometimes they went to a cafeteria to eat. In Canada, Hosein refuses to go out with her. He told her that they should both have gone for non-disabled spouses. Firouzeh relates the conversation: He said, ‘Marriage of two disabled people is not correct. You face issues.’ I said, ‘What issues? I have faced all the issues in twenty-seven years of marriage and never complained. What is happening now?’

Firouzeh is sad that she and her husband do not go out together: When I see other people go out, I feel depressed. Why not me?

Firouzeh says that Hosein is very conscious of them going out because he does not want the public to see two people – husband and wife – in wheelchairs. Hosein’s discomfort with ‘two people in wheelchairs’ and the social prejudices that this image evokes contributed to spousal abuse. On one occasion Firouzeh wanted to talk on the phone to her elder sons, who were visiting her parents. She asked Hosein to get her two phone cards. Firouzeh could not read the numbers and had difficulty following the instructions. When she asked Hosein for help, he lost his temper: I felt very sad and said, ‘Look I have not talked to my sons for three months.’ He took the phone by a violent gesture. He dialled the number and gave the phone to me.

When Firouzeh’s mother asked if she could talk to Hosein, he said to Firouzeh, ‘Don’t you know that I am not feeling well? Please do not do that again.’ After the call, he argued with me saying that I do not have any brains. He talked in a way that I felt very bad about myself. I went to my bedroom and cried. Then I prayed to God again. I saw that he did not care about me. For two days, the situation got worse, and whatever I did he would say something to me. I did not know what to do. I tried to talk to him saying, ‘Please understand me. I am a mother. I am a mother. I need to talk to my sons. I need to support them

108 Racialized Bodies, Disabling Worlds and help them to live their lives.’ He said, ‘I do not care whatever happens. I do not care.’

Firouzeh got a call from a policeman. She had reported that her husband had beaten her. A conventional reading of Firouzeh’s account would lead us to believe that domestic abuse is a private matter and that it is cultural. State policy and institutional structures do not acknowledge their responsibility in the occurrence of violence. The popular view, perpetuated by the media, attributes domestic violence among immigrants to cultures brought from the ‘uncivilized’ world, but this is not the case (Jiwani 2006; Narayan 1997). Immigrant women are especially at risk due to their social and economic vulnerability; they are at risk because of the lack of occupational opportunities, inaccessibility to health care and social services, and the prevalence of racism and sexism. Yasmin Jiwani points out that isolation is an important factor: ‘The isolation that immigrant women experience has been identified as a key factor contributing to their risk. It is exacerbated by their dependent status on their spouses, as underscored by immigration legislation, resulting in an unequal power relation and the potential for abuse within the family’ (2001, ix). The vulnerability of immigrant women with disabilities is compounded in relation to their able-bodied counterparts. While the latter are desirable because they take on a double workload (waged work and housework), the former are dismissed as non-productive members of society. This perception extends even to feminists, who have generally been reluctant to forge alliances with either mainstream or immigrant women with disabilities. Their rationale is that the social constructs of dependence and helplessness associated with disability would undermine their political work, premised on notions of strong and independent women.8 Firouzeh’s experience of abuse, while not absolving Hosein, must be attributed to her social location in Canada. Her vulnerability can be explained by the fact that she is legally dependent on a husband who has also been rendered helpless. Her perceived dependency has led social services providers to dismiss her as insignificant. Her desire to work has been ignored due to the deeply rooted assumption that people who have disabilities cannot undertake waged work, at least not on the same scale as others. The relatively few disabled people who are in the labour force are there as a result of advocacy work by disability groups that do not necessarily accommodate immigrant women.

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Firouzeh’s vulnerability in the domestic sphere is compounded by the fact that the outside world does not take any notice of her. She is isolated. Her sole contact at the time of the study was a social worker, and that social worker had not made any attempts to introduce Firouzeh to the social services to which she is entitled as a citizen of Canada. The social worker’s indifference to Firouzeh’s situation is a function of societal insensitivity to a racialized woman with disabilities. Firouzeh is ‘othered’ on four fronts: she is from a non-Western country, she is poor, she is disabled, and she is a woman. In Iran, Firouzeh coped with two markers of negative difference: gender and disability. But she did not position herself as a victim. She reconstituted her world using scant resources. Underlying her actions of moving out of her parents’ home, undertaking waged work, and establishing a family is a vision of life where being disabled does not mean having to take a back seat. Firouzeh would repeatedly tell her husband Hosein: We do not have legs but that does not mean that we do not have brains.

Firouzeh takes pride in the fact that she has raised four children while using a wheelchair: she adopted the socially valorized role of a mother. This status enables her to subvert the stigmatized identity of a woman who has a disability. She refers to her life in Iran as ‘beautiful,’ despite the eight-year separation from her husband. But upon migration, Firouzeh found herself in a socially vulnerable position, encapsulated in the domestic abuse that lowers her self-esteem and makes her feel devalued. In Disability and Culture, anthropologists Benedicte Ingstad and Susan Whyte (1995) lay out the parameters for a comparative study of disability. They note that in the West, a centralist state plays a key role in framing notions of disability that contain a paradox. On the one hand, persons with disabilities ‘are given a social identity, as citizens who have the same rights as others and should be integrated like ordinary people’ (1995, 8; see also Ingstad and Whyte 2007). On the other hand, this homogenized integration denies persons with disabilities the right to be different, leading to a situation ‘of nobody “seeing” the one person in the room of whom they are most acutely, and uncomfortably, aware’ (ibid., 9; see also Murphy 1988). Second, Ingstad and Whyte take issue with the assumption that in the West (Europe and North America), persons with disabilities are the

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recipients of social services and financial support, although these are not easily available and have to be struggled for. What often remains overlooked is that it is biomedicine that determines who is entitled to what services and for how long. The biomedical focus on objective criteria and measurement serves the interests of the state by enabling it to distribute limited resources in a seemingly fair and systematic way. Furthermore, services rendered are premised on profitability for the state. Here, able-bodied persons are employed to serve persons with disabilities, who are socially constructed to be helpless and dependent. In sum, in Europe and North America, the infrastructure of institutions, along with state legislation and policy, defines the quality of life and social identity of persons who have disabilities. The impact of the centralist state is strong; it does not give space to the formation of multiple social identities, difference, and sociality (Brodie 1996; Kittay 2001). This lack contributes to a disabling environment. Jim Sinclair, an activist, puts it this way: ‘I am not taken seriously. My credibility is suspect. My understanding of myself is not considered to be valid, and my perceptions of events are not considered to be based in reality. My rationality is questioned because, regardless of intellect, I still appear odd’ (cited in Waltz 2005, 431). While the social constructs of disability, gender, and race are used as markers of difference, either they are rendered as visible for the purpose of ascribing them with a subordinate status or they are erased. Different and more diffused conditions prevail in the South. Here, as Whyte and Ingstad report, a homogenized viewpoint on impairment does not exist: ‘The anomalies that may be seen as inhuman differ greatly from one society to another, and they do not correspond directly to biomedical definitions [read: institutionalized] of impairment’ (1995, 11; see also Instad and Whyte 2007). These authors contend that personhood is fostered within communities of relationships. Here, ‘being a member of a family and having children are far more important to being a person than work capacity or appearance’ (Whyte and Ingstad 1995, 11). They submit that when people are primarily considered in relation to others, their personhood does not diminish to the same extent as in a situation where undue emphasis is placed on individual abilities and achievements – the mainstay of biomedicine and institutionalized interventions (see also Kittay 2001). The comparative framework helps us to understand Firouzeh’s struggles to establish herself as a person in both countries. Within Iran, Firouzeh created multiple roles for herself in a setting that was diffuse

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and did not offer much in the way of social provision. In Canada, the centralist state determines Firouzeh’s life chances, albeit in a way that marginalizes her. Consider the following moments in her narrative. The Broken Wheelchair Incident They take forever to give me any kind of service. For example, once my wheelchair did not work. It took two weeks. I sat on the sofa for two weeks. I phoned the company and asked. They said, ‘Our workers are not here, and they are on vacation. They will come later.’ When they came to take the wheelchair and repair it, it took two weeks. I could not go to school during that time. I could not get any work done. I just went to the bathroom every night and then slept the rest of the day. They should or could have lent me a wheelchair when they took mine away until mine is ready. In this way, a person would not be disabled from doing daily stuff. They must have the resources, but they do not want to do this.

Narrative scholars have informed us that people tell stories for two reasons: to make sense of their experience of suffering and to elicit a response from the readers (e.g., Jackson 2006). Firouzeh, whose lifelong work has involved remaking a world from scratch, is bent on drawing the attention of the listener/reader to an event that would otherwise be dismissed due to her social invisibility. Firouzeh brings home the impact of her two-week confinement through body language (sitting on the sofa) and narrative subversion of the script: disability equals dependence. In The Wounded Storyteller, Arthur Frank (1995) informs us that the body does not speak; it begets speech. Firouzeh’s portrayal of her body as being reduced to ‘nothing’ (sleep all day) sends a powerful message to society. Her grounding of her body in space and time (the sofa, two weeks) brings into relief her suffering that would otherwise remain unnoticed. The irony is well stated: while other people (the paradigmatic citizens) are on vacation, an immigrant woman with disabilities (a lesser being in the eyes of society) spends her time on the sofa. Note the effective use of dialogical strategy: They said, ‘Our workers are not here, and they are on vacation.’9

Firouzeh uses the incident of repairing the wheelchair to show that

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she is not ‘dependent’ and neither is she ‘disabled’ in the way that society has constructed these categories. Not having a wheelchair means that she is not able to perform her daily tasks, including attending English as a second language (ESL) classes. Reconsider her words: They should or could have lent me a wheelchair when they took mine away until mine is ready. In this way, a person would not be disabled from doing daily stuff. (Emphasis added)

This message reveals the workings of a disabling society. As Susan Wendell has expressed it: ‘Disability is socially constructed through the failure or unwillingness to create ability among people who do not fit the physical and mental profile of “paradigm” citizens’ (1996, 41). Taking a Bus Firouzeh uses the bus to go to places even when there is an emergency. Firouzeh’s experiences with bus drivers have generally not been pleasant. She has been dismissed as an unworthy commuter. Most of the bus drivers do not take you, some of them do. I have seen things. Most of the bus drivers are kind and human but some of them, because they do not feel like getting up from their seats and help a disabled person, they say, ‘Wait take the next bus.’ But I have that time frame to get home and make dinner for my kids, as my kids have come back home and they need me. I have anxiety and stress and want to get home. The bus driver does not know how stressed I am, and the next bus causes me to be delayed by about two hours. I am late and am on the street for no reason. Yes it has happened to me many times. The first year, I did not know anything. But now I have learned why this happens. The bus driver can take me on his bus. But he doesn’t. I am a disabled person but I do everything on my own. I take care of myself. On the bus, I fasten my wheelchair on my own and fasten the seatbelt on my own. When I get off the bus, I push the seat in the same position as it was. So I do not let the driver get off his seat and do these things for me. I say, ‘I can do that.’ I do not want to bother others. Many disabled people cannot do that, and really the bus driver should help them. I am very careful with these things, not to be a burden on the driver.

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Backed by the Council of Canadians with Disabilities (CCD), persons with disabilities took the issue of transportation to Ottawa, arguing that this was their citizenship right. This resulted in a long struggle, starting in the 1970s, as the idea that accessibility poses major barriers for people with disabilities to participate in their communities was not easily recognized. Yet, the struggle for barrier-free transportation continues, as some of the rights gained have been eroded through budget cuts. The long-standing norm that public space is a male domain and that it is a preserve of white, able-bodied people continues to influence policy, much of which is gender-blind and fails to include the concerns of immigrants and visible minorities (Status of Women Canada 2001). It is important to note that policy and legislation are not sufficient to bring about social change. In The Colour of Democracy, Henry et al. (1995) argue that legislation that is devoid of an action plan is ineffective. It may do more harm by giving the impression that the state is doing something about social problems, while in reality only a fraction of the population benefits. When the bus driver stops to pick up passengers, he or she sees a ‘brown’ woman sitting in a wheelchair. During their training, bus drivers would have received instructions on inclusiveness, yet they are likely to perceive Firouzeh, with her disabled and racialized body, as being of lesser value, because of societal attitudes towards the Other. We must note that this is not the case across the board. Race- and gender-based discrimination must not be assumed. They are enacted in everyday life situations. In retelling the bus driver incident, Firouzeh begins with the testimonial genre of ‘you.’ In doing so, she brings the listener/reader into her space. In other words, it is only after she has secured an audience, and an attentive ear, that she tells her story. Not wanting to present herself as a victim, Firouzeh begins with positive words, ‘Most of the bus drivers are kind and human.’ This statement brings home the impact of unkind actions. This play of words serves her well. By not stereotyping all bus drivers as being racist, her lived reality achieves more credibility. Firouzeh highlights a second point. She states that the bus driver’s reluctance to take her on board would mean that he has to put in more work. He would have to get up from his seat, lower the front seat to make room for her wheelchair, and fasten a seatbelt around her. Firouzeh explains that he does not have to do any work for her: I am a disabled person but I do everything on my own. I take care of myself.

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This includes fastening her seatbelt and, more importantly, putting the bus seat back to its original position. Firouzeh points out that the bus driver’s refusal to take her on board prevents her from preparing dinner for her children in good time. In the eyes of society, Firouzeh is an immigrant woman with disabilities. Her self-inscribed identity, however, is that of a mother and a wife – someone who runs a home, like every other woman. She also attends classes. Firouzeh uses the bus incident to bring out the point that she is a functional human being, reclaiming a humanity that society has denied her. A Couple Must Not Be Seen in Wheelchairs Firouzeh’s husband Hosein has become conscious of the image of ‘the wheelchair couple,’ after twenty-seven years of marriage. He and his wife had made headline wedding news in an Iranian newspaper and raised four children as parents who use wheelchairs. Hosein’s discomfort is a function of compounded factors: social exclusion of racialized persons with disabilities, along with a discriminatory immigration policy. Racialized persons are often asked the question: ‘Where are you from?’ Racialized persons who have disabilities are given the societal message: ‘You should not be here, as you are a drain on our system.’ Exclusion of this constituency in immigration policy renders them socially invisible. When in the public sphere, racialized people who have disabilities encounter people who are indifferent or racist. This does not rule out individual acts of kindness and compassion. Their societal exclusion, however, means that they are at the mercy of other people who may be insensitive or may be kind. Hosein’s and Firouzeh’s experiences in their new homeland in Canada have largely been negative. While Firouzeh is a fighter, Hosein harbours anger and frustration built up over a period of eight years. When he first came to Canada, he wanted to work. But waged work was ruled out, as he was judged unfit ‘just because I am “disabled.’’’ Alone and isolated, he went through a prolonged period of depression. When Firouzeh joined him, he became more conscious of the couple’s disability fostered by a disabling environment. Hosein’s experiences of exclusion are so acute that he sees his own wife as ‘disabled’ rather than as the mother of their four children. The above context explains the marital abuse that Firouzeh was subject to at the time of the study. On one occasion, she asked for professional help:

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I had a problem with my husband, a disagreement about something. I phoned and asked for help, so two workers came in. I phoned and I said, ‘I do not know English and I need a translator. I have problem with my husband and I need help.’ They suggested they would come and take me away from my home if the problem was too harsh. They said, ‘We can take you to some home until the problem is solved.’ I said, ‘No, my problem is not that bad that you take me somewhere else. You can come as a friend, as a worker, as a leader, or as an adviser to talk to both myself and my husband. Talk to my kids so that we can find a solution. I do not like to separate from my husband. That would not be good for my kids. Not good for me or my husband. You can come here and talk to all of us.’ We made an appointment, and two Canadian workers came in and talked in two sessions with my husband and myself with the help of a translator. And it helped. Later on, my husband was supposed to phone again and ask for an appointment. But he did not. And they did not come back. They did not even check with me to ask if I still have a need or not, if I still have a problem or not. And later, I went to see those workers in the organization that they work in. I wanted to talk to them. But I was told that they are not there or were on vacation, so up to now I have not been able to tell the workers how I feel.

Domestic abuse of racialized immigrant women is not merely a result of culture, as common perception has it. It is a function of the women’s subordinate position in society. Their vulnerability is accentuated by unresponsive and insensitive social services and health care systems (Jiwani 2001). What is overlooked here is that immigrant women, including those who are ‘disabled,’ are disadvantaged on multiple fronts. They are given low priority for job training and ESL classes; they are underemployed or unemployed; they face a double workload; they are socially isolated; and they are exposed to discrimination and racism in their daily lives. When racialized immigrant women seek health care or social services, they face barriers of language and access to services, as noted earlier. This scenario amounts to living within an unresponsive environment. Yet, stories offer a medium for individuals to reconstitute themselves and find some way out, however minuscule it may be. My reading of ‘the couple in the wheelchairs’ focuses on this latter aspect.

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When Firouzeh phoned her social worker, she laid out the parameters of the kind of help that she required: a translator and family counselling. The social workers suggested that she move into a women’s shelter; they did not take into account Firouzeh’s need to keep her family together. Nurturing her family is a lifelong labour that has helped Firouzeh reverse an all-encompassing disability identity. Furthermore, Firouzeh suggested a model of ‘care’ that blurred the boundaries between friend, worker, leader, and adviser. This alternative model is worth considering in light of the relatively linear and one-size-fits-all approach of professional workers. As Ong argues (1995), professionals are made to do the policing work of the state. This includes controlling the body of the Other, a task carried out through the medium of the Eurocentric biomedical model. In Firouzeh’s case, the social workers offered two sessions for the complex and painful experience of marital abuse. Furthermore, they left it to the husband – the perpetrator – to follow up. Firouzeh is acutely aware that she has not been served well: They did not even check with me to ask if I still have a need or not, if I still have a problem.

Upon her visit to the office, she was informed that the workers were busy or on vacation. Inaccessibility and lack of services are also forms of control. Firouzeh makes several points in relating the incident with the social workers. Despite language limitations, she lays out the parameters of her ‘therapy.’ She rejects the individualized model in favour of family therapy. Second, she critiques the system for its indifference. In the process, she reinforces a point made by feminist scholars that women’s social and health care needs are consistently overlooked in a maledominated society (Morrow et al. 2007; Lee 1999). Firouzeh’s visit to the social workers’ office is a pragmatic move filled with some hope that she might come across a responsive soul. But this is not the case. Her message to society – the listening/reading audience – is effectively conveyed: I wanted to talk to them. But I was told that they are not there or were on vacation. (Emphasis added)

Firouzeh’s portrayal of the image of a woman being turned back from a place that has an obligation to help says it all.

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‘My Kids Are Hungry’ People who receive social services benefits have a difficult time. They are constantly reminded that what they receive is a charity and not an entitlement. Overlooked is that people’s desire to undertake waged work is thwarted by an indifferent society. Firouzeh wants to work: I am not the type of person who isolates herself and says, ‘I cannot do anything.’ I like to participate in the community. I may have lost my legs, but I can use my brain, my hands, my eyes, my ears, my fingers. I still have these.’ (Original emphasis)

It is societal disablement that compels Firouzeh to seek welfare assistance. As noted above, she has expressed a desire to undertake waged work. She is an active woman who happens to use a wheelchair, as opposed to being wheelchair-bound. About a month ago, I had a problem. We had nothing at home. No food and no money to buy food. We had run out of money, and my husband did not let me tell anyone about this. Maybe someone could give us a small amount of money or help me somehow. But he would not let me tell anyone. I phoned a lady I know, and I told her that we did not have anything at home. ‘I do not know what to do.’ She told me to go to my financial worker and tell her that I do not have groceries at home and my kids are in need of food. ‘See what the worker can do for you.’ I went to the office of that financial worker. There was a lady. She was a new worker. She did not know me. I told her my name and my husband’s name and introduced myself. I told her that we are a family, and I said that we have not had any grocery money for one week. She said, ‘We cannot help you or give you something.’ I was sad and told her, ‘What should I do now? My kids are hungry and need food.’ She said, ‘You should use the disability benefits you have, and spend it in a way that you do not run out of money in the middle of the month.’ I know that. We are four people to live on $1,200. From this $300 goes for the rent in addition to what the government pays. It is hard and then we have other bills. She started telling me how I should spend the money. I became very upset and started crying. I said, ‘I came here with hope and now you are talking to me like this.’

118 Racialized Bodies, Disabling Worlds Then I dialled my friend’s number on my cell and let her talk to the worker in English. So she told the worker to help me somehow so Firouzeh does not get embarrassed when she goes home. So the worker said, ‘I can give you $80 to spend on groceries, and then we can deduct it from your next month’s cheque.’ I went to an Iranian supermarket and bought food and vegetables. When my sons came home from school, they were happy and they told me, ‘How good that we have something to eat after two weeks.’ They said, ‘Thank you Mom’ and kissed me on the cheek. I told them that I got the money from my worker. Anyhow, she helped me but that was not easy to get the help. It was hard. The food lasted until the next cheque came.

Firouzeh begins her story on a temporal note. By stating that the incident occurred a month ago, she imparts continuity to her story. This was one moment among others that constitute part of her everyday life. The past is present. It cannot be dismissed as a bygone incident until such time that it is rectified structurally. Second, Firouzeh introduces a human dimension, despite the crisis: I told her my name and my husband’s name and introduced myself. I told her that we are a family and ... that we have not had any grocery money for one week.

Although she barely speaks English and had no translation services, Firouzeh conveys her message loudly and clearly: namely, her family with two children has not eaten for a week. When Firouzeh secures $80, to be deducted from her next cheque, she renders it into a celebratory event. She shops at an Iranian foodstore, cooks, and serves the meal without letting her children or her husband know the difficult time she had in getting the money. She just says, ‘I got the money from my worker.’ But, at the same time, she responds to the patronizing worker. ‘The food lasted until the next cheque came.’ She leaves it to the listener/reader to fill in the blanks, including her resourcefulness in stretching the $80 in groceries for two weeks, feeding four mouths. Firouzeh is well aware of the association of fundamentalist Islam to Iran, the country of her birth. She is determined not to let this negative marker of difference compound her marginal status. This may be her reason for not focusing extensively on Islam. Yet, she wishes to cultivate aspects of her heritage that help her to cope with life and her strug-

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gles in her new homeland. Firouzeh reports that Allah is the centre of her life. She calls upon Him for strength but also because ‘when I think of Him, He was always with me. When I was lonely, He was my companion. When I was in need, He helped me.’ Recall her decision to offer 14,000 salwats (recitations) to secure an apartment (instead of a basement suite) for her family. Firouzeh states that her personalized relationship with Allah has allowed her to redefine her identity as more than a woman ‘who had lost the use of her legs.’ It seems that Firouzeh has worked out her own interpretation of Islam, which she now embodies – an approach that serves her well. She does not express her faith publicly, being aware of the strong public presence of Islamophobia. At the same time, she is able to nourish her tradition in a way that helps her internalize an identity as someone who has a relationship with a higher being, rendering her less helpless and less isolated. Firouzeh’s embodiment of her faith cannot be viewed in isolation. As the story of her life reveals, she too can take her place among other Muslim women in the diaspora who seek to ‘courageously challenge and transform unequal power at personal and public levels’ (Hojabri 2006, 232). Concluding Note Her lifelong struggle to establish her identity as a woman, a mother, and a citizen constitutes the core theme of Firouzeh’s narrative. That she has had to work so hard towards this goal suggests the extent to which her civil and legal rights are violated. Her situational accounts in two countries are telling. In Iran, the form of assistance she received was largely informal; she is not rendered totally dependent. She and her husband are able to undertake waged work. A different scenario prevails in Canada, where she adopts a ‘disability’ identity (on paper) that she continually negotiates so that she can secure benefits. Ironically, she receives minimum services, and these are given to her with the message that she is not a desirable immigrant. This stance translates into stigma, discrimination, and racism that Firouzeh experiences within and outside the social services sector. Of interest in Firouzeh’s narrative is the way in which she negotiates everyday life situations and remakes her world. She presents herself as a mother, wife, daughter, student, homemaker, and believer (a person who has faith). In claiming her rights in these overlapping spheres, Firouzeh brings home the point that local everyday events matter. It

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was the accident that first showed the intricate link between her family’s social location (the local) and the ‘colonization’ (extra-local) of Iran. Firouzeh’s accident was not a personal affair confined to the discrete unit of the family. It had a politicized history. Firouzeh adopts the socially valorized roles of mother and wife to define herself as a woman in the wake of societal rejection of her body. She raises four children with pride and a sense of accomplishment. Her migration to Canada brings in a different set of issues. She finds herself waging a battle on two fronts: the home and the outside world of social services. In both spheres, she reclaims her humanity, proving to her husband that she is a good wife and mother – the provider for the family. It is this image that she presents to the social workers, subverting the stigmatized identity of a racialized woman with disabilities. Firouzeh’s life may be summarized as a series of dislocations, beginning with her accident. Using the medium of the story, she gives meaning to these experiences that are not devoid of pain and difficulties. Firouzeh imparts the message that she is not ‘disabled’ in the way that society perceives her. Through narrative moments, Firouzeh implicates the system but also suggests imagined possibilities of a reconstituted life. She is efficient, competent, and resourceful – qualities that she exercises during times of crisis. When her children are hungry, Firouzeh secures funds, does the shopping and cooking, and feeds them. In return her children hug her. Through such experiences Firouzeh authors her own text, telling her-story.

5 Women as Subject: Multi-voiced Narration1

The year 1997 is imprinted in Sara’s mind, for it is the year when she came to Canada as a refugee, a border-crossing moment that freed her from an abusive marital relationship. Sara came to Canada with the determination to build a new life in a place that she considered to be a land of opportunity. She got a part-time job and had plans to register for courses that would help her re-enter the nursing profession, even if as a nurse’s aide, although in Iran she had been a nurse. Before embarking on her journey towards a new career, and thereby becoming financially self-supporting, she was confronted by two challenges: (1) validating her citizenship status, as a refugee, and (2) dealing with the sequelae of a major car accident. There is a substantive connection between the two because the car accident turned her into an undeserving immigrant. As noted above, Sara came to Canada as a refugee. After three years she was granted the status of a permanent resident. She was thus entitled to citizenship rights in the areas of social services, health care, and employment. But she was unable to secure these rights because of systemic racism, accentuated by her car accident that rendered her ‘disabled.’ In short, the issue was not her legal status; it had to do with racialization of her body (Jiwani 2006; Thobani 2007). During the three years it took before Sara was granted resident status, her life was in limbo, and she could pursue her goals only in a sporadic way. Her status of waiting permeated other areas of her life, such as having to sign on to the long list of people waiting to take classes in English as a second language (ESL). Sara persevered. Her actions show that she was determined to reverse the deskilling process that immigrant women are subjected to because their qualifications from back home are not recognized, and where the usual result is underemployment (Ng 1996).

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Evidently recognizing that it would be an uphill battle to confront the system in Canada, Sara opted to become a nurse’s aide as opposed to a nurse, her profession in Iran. This step placed her in the category of a ‘model minority immigrant’ willing to take a job below her skills level in order to become financially independent (Li 2003). However, Sara’s car accident brought about a change in her status from an aspiring to an ‘undeserving’ refugee and immigrant woman. Her economic worth took a sharp downward turn, activating the all-too-common discourse of the Other as a drain on the system. Sara’s story exemplifies the workings of compounded racism, where people’s worth and status are diminished to the extent that it should give us cause to reflect on the kind of society we live in and how we might effect structural change. In keeping with the tenor of this book, my entry point is the participant herself. I take Sara’s narrative to be foundational. She brings into relief the point that racialized women who have disabilities are human, with histories and life trajectories that must be validated and not erased. This collective story needs to be told, with analytical forays and detours. This chapter focuses on such a task in relation to the content (what and how it is said) and context (political framework) of a multivoiced narration. Defining Moments I got my immigration papers. Because I was a nurse in Iran and I wanted to have a licence here and an education, this took time. Without the immigration papers I could not attend college and study. So when I got my immigration papers, I went to Capilano College. I went to a class for six months, and I studied up to level five there. And then, allow me to tell you, my dear, that at that time the buses had a strike, and I used the time to go to King Edward. I was waiting in line to take some courses for my nursing and also improve my English. And then, fortunately or unfortunately, in January 2002, I had a horrible car accident. This accident was so horrible that it caused me a fracture in my L5.

Sara’s perseverance to work hard and settle down as quickly as possible is brought home in the above passage. Note how she continues with her education despite the setback of a bus strike and how she had signed up for nursing courses as well as ESL classes. A car accident

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reversed her plans to forge ahead. Sara was compelled to take on a twofold battle: to heal and to fight the prejudice and discrimination that engulfed her life as a so-called undeserving immigrant. Overlooked here is the amount of time (three years) that it took Sara to validate her refugee claim. This is a stressful time for all applicants, as the process is long and arduous. To better understand the implications of this process of waiting, it helps to examine what appear to be simply procedural matters. We in the West cite security and health reasons for screening and policing bodies at the borders of nation-states. The ‘floodgate’ argument of the First World being overrun by Third World migrants is not uncommon. What this negates is the stark reality that refugees need protection from persecution, a fact spelled out in the United Nations Convention and Protocol Relating to the Status of Refugees. Furthermore, across the globe, refugees are created by violence, war, and structural adjustment policies, all of which are a function of colonialism, imperialism, and global capitalism. The centre of power is the West, the repository of military and economic dominance. It should be held accountable for displacing people in the first place. But this is not the case. The West has positioned itself as the saviour of the Third World, a stance that erases the asymmetrical power relations between the two worlds. Furthermore, refugees are constructed as the Other. Take the example of Canada. This nation’s imagined social cohesion is anchored in the idea that ‘the original [white] inhabitants have a legitimate right to defend themselves from the massive influx of foreign bodies who possess few of the values of honesty, decency, and democracy of their “hosts.” Refugees, it is argued, must be given time to learn respect for Canadian culture, and original citizens must be given time to know who they can trust’ (Razack 2002b, 5). It is this political agenda that leads to enforced waiting, temporally and otherwise. Upon validation of their legal status, refugees are made to wait for social services (underfunded and in short supply) and ultimately for a place in Canadian society, sending an unspoken but implied message that they are of lower value, not citizens with substantive rights and entitlements.2 Consider Sara’s case. Upon receiving her resident status, Sara had to wait yet again to register for courses that would help her meet her career goal of becoming a nurse’s aide. She decided to register for ESL classes to upgrade her English. Sara states that this was difficult, as she was placed on a waiting list and when she was accepted there were only a limited number of class hours. ‘Four hours a week are not enough for a language class,’

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she says. Keen to hit the ground running, Sara took computer courses ‘so that I would always have some kind of a job.’ But again it took time to register and get ‘all the paperwork together.’ Waiting to register for the courses that she needed was stressful for Sara, as she tried to establish herself alone in a new and unfamiliar environment. While registration for courses may appear to be simply a procedural matter, this is not necessarily the case. Settlement services have a low priority and have been subject to budget cuts following the Canadian restructuring program of the 1980s and 1990s, resulting in longer wait times (Lee 1999). It was during this waiting period for courses that Sara met with a car accident that put her career aspirations on hold and plunged her into a world she had not imagined possible.3 Sara had taken a part-time job, as she did not want to depend on the state for assistance. At the time of the accident, Sara was a passenger in her employer’s car: I hit the seat in front of me and I became unconscious. And when I became unconscious, I was hit by two more cars. I mean when the car loses its balance, and heads into the lane in front of us, a total of four cars crashed into each other ... When I became conscious, I opened my seatbelt, and slowly and gradually someone laid me down on the back seat. And when I slept on the seat, my eyes opened slowly, slowly and I saw my friend. And when I saw her, I felt like my back was broken. So she asked me, ‘How are you?’ And I said, ‘I am hurt on my left’s side.’ Because I had worked in the hospital, I knew what happened to me, so I said, ‘I am hurt from the waist.’ And then at that moment I raised my hands to God and thanked God for being alive. Although I am hurt, still I am alive. So my friend said, ‘Have you gone crazy, thanking God?’ I said, ‘This car crash scene that we see, it is there to appreciate your life.’

Sara’s account of the accident is multidimensional. Her vivid portrayal of the scene and her conversational mode draw in the listener/ reader. Establishing her professional authority as a nurse was important at a time when medical professionals dismissed her pain as inconsequential (see below). Sara’s philosophy on life as a gift makes us see her as a person and not as a refugee woman devoid of history or critical life experiences. This account of the defining moment may be read as a voice from the margins of society. Disenfranchised persons are well aware that when

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they speak they are not always heard. Their stories are only noted insofar as they serve to advance the political agendas of dominant groups (Collins 2000). We recognize how dominant groups appropriate stories of the Other. Less understood are the multiple strategies deployed by marginalized people so that they can be heard. At one level, people who are on the margins of society use the language of the dominant group, while at another level, they subvert it to create a new discourse. With this point in mind let us continue with Sara’s story. An ‘Undeserving’ Migrant A car accident rendered Sara disabled, adding one more marker of difference to her immigrant, gendered, and racialized identity. Pain and injury usually evoke care and compassion. This was not the case with Sara. The car accident transferred her from a ‘deserving’ immigrant heading for the labour force to an ‘undeserving’ immigrant who would be a drain on the system. Sara’s life was devalued because of the severity of her injuries. Like the other women in our study, she was forced to wear the stigmatized and essentialized identity of disability, despite her perseverance and continued efforts to continue with her studies. Sara tells of how, while she was in bed and in a lot of pain, she read the 450-page English dictionary that her mother had sent to her from Iran. When she felt somewhat better, she registered for computer classes that she felt would help build her career as a nurse’s aide. Sara incurred an injury to her lumbar vertebrae: ‘It means that the bones on my back were fractured.’ The treatment that should follow such an injury did not take place. The doctor in attendance ‘did not pay attention to my injury,’ prolonging her recovery time. Sara recounts how the left side of her face and the right-hand side of the body, from the knee down, were numbed all because of strong medication. I went to the doctor and told her that when I take these pills, my fingers and toes get numbed. ‘What do you think it is? Is that because of the back pain or what?’ She said, ‘Stop the pills.’ And I was home and cried for three days, cried of pain.4

When her ankle became numb, Sara went to the doctor again. It was only at this time that she was referred to a specialist. Sara was discouraged that all the doctors she had seen at the hospital, including her family physician, had dismissed her pain as ‘normal back pain’; they did

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not attend to her fractured back bones. The specialist told her to rest for two weeks. When I came home and noticed that the numbness had gone to my knees, I went to the doctor again and said, ‘Doctor, you said that I do not need any surgery, and sleep two weeks at home. Now this has gone to under my knee.’ He said, ‘Oh, I am sorry. I should do surgery in about three to four days.’

When Sara explained that she was not mentally prepared for the surgery, the doctor categorically informed her that the numbness would reach her groin and this would mean that she would lose her leg. Note that Sara does not talk about corporeal pain in a way that locates the suffering within the discrete space of the body, thereby individualizing it. Sara’s account is filled with people who are active players within the system. They make decisions that have an impact on her lived reality. Their refusal to acknowledge Sara’s fractured back amounts to medical mistreatment. She almost lost her leg due to the negligence of the professionals (read: an insensitive system). To bring home the issues that confront her in a disabling world, Sara deploys multiple strategies to enlist the attention of a listening/reading audience. The human need for recognition cannot be underestimated. I agree with Michael Jackson (2006) that, in times of crisis, it is only through the presence of others that we can affirm our social existence. Through the act of storytelling and the related genre of multi-voicing a person can affirm her social existence. Multi-voicing is one method through which an individual can move out of solitariness and into the world of social relationships. Multi-voicing Conversational Mode Unlike a conventional text, a conversational mode conveys a sense of openness so that one’s reality is not frozen in time or space. The story can be replayed for an empathetic response. Let us reconsider the following moment: When I came home and noticed that the numbness had gone to my knees, I went to the doctor again and said, ‘Doctor, you said that I do not need

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any surgery, and sleep two weeks at home. Now this has gone to under my knee.’ He said, ‘Oh, I am sorry. I should do surgery in about three to four days.’

In recounting this conversation, Sara implicates the doctor for his misdiagnosis. The doctor gets away with a casual apology and a rushed surgery. Such is the power of the system. The conversational mode draws the listener/reader in – it is not idiosyncratic. This strategy brings home the vulnerability of people on the margins, people who are not seen as fully human. This is the story of people who have disabilities. Regardless of their location in society, people with disabilities are subjected to stigma and structural violence that reduces their being and personhood to object status. In her article on women with disabilities, Hilde Zitzelsberger reports an experience as described by one of her participants, Hope: We talked a bit about me feeling exposed walking down the street in the village, people staring at me and I thought that I was visible there but visible as someone different, someone that has a disability that walked down the street with crutches. So the focus was on physically being visible. Not emotionally being visible because a person could stare at me and see my crutches, but they would not go any further than that. (2005, 394)

Where race and gender are operative factors, this paradox of being invisible while being particularly visible is further intensified. Sara takes it upon herself to tell her story while knowing full well that the world has not taken note of her existence as a whole person. Like the women in the South African Truth and Reconciliation Commission (Ross 2001, 2003), Sara feels it necessary to highlight the social and political context by using strategies that would resonate with her assumed audience. Stories are told to people, and they require careful listening to/reading of the multiple ways in which they are told. Attending to these strategies allows us to capture ‘layers of experiences entwined in wide sets of social relations. Hidden in such discourse of domesticity [part of gendered strategy], I suggest, are powerful forms of knowledge and agency that need to be carefully recognized and sensitively heard’ (Ross 2001, 259). Consider Sara’s embodied understanding: When I asked the nurse to move me, she almost threw me in the air, and when I screamed the nurse said, ‘What happened?’ Then at another time,

128 Racialized Bodies, Disabling Worlds when I saw that they do this to me, I moved with all the pain and moved from side to side. They used to bring a movable toilet so I could do my things. This is for the person who is sick and has pain, and I had truly lots of issues and lots of pain. So I told the nurse to bring me the toilet. She said, ‘No we do not bring you that. You have to go to the washroom yourself.’ So I said, ‘I cannot walk. So please take my hand and walk me to the toilet.’ And, God be my witness, for a distance of one metre, she dragged my hand ... I told a man [male nurse] who had the night shift to give me a pill because I had bad pain. I told him to give me a tablet at 11 p.m., and he went and came back at 5 a.m. I told him, ‘You know I have been waiting for this medication since 11 p.m. and you did not bring me the pill.’ He said, ‘No I came and gave you the pill and you were asleep and took it. You were asleep and did not notice.’ I said, ‘I am not that confused that someone gives me medication and I do not notice.’ I wanted to flee from that hospital and come home and rest.

In this passage, Sara presents vivid images of pain and suffering.5 Sara’s account of these incidents in the hospital resonates with the comment made by Veena Das that we should not replicate society’s silence towards suffering. Das suggests that we place social institutions in two opposite modes: those that produce suffering, on the one hand, and those that create moral communities that can address it, on the other (1997, 563). Sara’s attempt to voice her experience of having her body dragged shows how difficult it is to render her suffering meaningful. Through the language of the body, she reveals the absence of care and therapy that one would have expected from health care providers. In this way Sara points to the realm of possibilities, reminding us that things can be different. Her complex weaving of how things are and how they ought to be lays out a political context. Sara states that her treatment in the hospital is a function of her having ‘black hair; maybe, I am a stranger, a refugee,’ and contrasts this with the statement, ‘like them, I am a person, a woman.’ Providing some explication of Canada’s history of racialized exclu-

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sion is useful here in understanding Sara’s story. In Race, Space, and Law: Unmapping a White Settler Society (2002), Sherene Razack argues that the nation-state of Canada has been imagined to belong to white settlers on the grounds that they developed the country. This fallacious logic erases the history and presence of First Nations, considered to be redundant or part of ‘the natural environment to be cleared from the landscape – like debris’ (2002b, 3). Simultaneously, non-European immigrants ‘are scripted as late arrivals, coming to the shores of North America long after much of the development had occurred’ (ibid.; see also Jiwani 2006; Thobani 2007).6 Non-European immigrants are foreigners who need to be policed. This discourse masks the exercise of power and domination integral to a nation-state. Ultimately, it is a racially unmarked group (the white settlers) who set the terms of reference for Others cast in the mould of ‘race’ (‘black hair’). In examining the health care context, Joan Anderson and Sheryl Kirkham argue that Canada’s health care system is not a discrete and neutral entity; but, rather, ‘it is enmeshed in a racialized and gendered construction of the nation’ (1998, 243). Taking the example of the indigenous people of Canada, Anderson and Kirkham demonstrate the link between the ‘othering’ of this population and their unequal positioning within the health care system, a situation that is also shared by nonwhite immigrants, with a hierarchy of ‘most-to-least-welcome national origins’ (ibid., 246). It is important to note that unequal relations of power are multistranded. Unequal power relations are to be found in patient-practitioner relationships, hierarchical relations within the system, culturally insensitive and gender-blind policies and practices, and the unequal distribution of resources. In short, power relations are governed by the politics of exclusion. The national story of who belongs in the imagined community, who is entitled to resources, and how these are distributed informs the Canadian health care system. Systemic exclusion of racialized minorities from the health care system is an institutional reality. While it is expected to provide care, women are least well served by the health care system. Occupying the position of outsiders, immigrant women are marginalized even further (ibid.). Anderson and Kirkham identify a contradiction. While the Canadian health care system reflects ‘the principles of comprehensiveness, universality, and reasonable access to health services’ (ibid., 249), it is not equally accessible to all. Social inequality is the order of the day. These

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authors call for an interrogation of the principles and taken-for-granted notions embedded in our institutions: ‘The issues that underlie inequity need to be understood and addressed by governments and policy makers as well as by health professionals; they must form the background against which administrative and clinical decisions are made, practitioners educated, and programs of research implemented’ (ibid., 250). Here, everyday life experiences of people are identified as crucial because ‘they unmask the many layers of contexts’ that inform the experiences of marginalized populations (ibid., 256). Unmapping ‘the idea of white settler innocence (the notion that European settlers merely settled and developed the land) and uncovering the ideologies and practices of conquest and domination’ will help us to deconstruct the national story (Razack 1998, 5). Taking the example of Africville, a black community in Nova Scotia, Nelson provides an illustrative example. She shows that the spatialized construction of this community as degenerate and slumlike provided the basis for its destruction. The city of Halifax established a Memorial Park to remember this century-old community, a step that Nelson considers grossly unjust. ‘This monument is the only visible evidence that Africville once existed, and even its tribute does not tell the story of the destruction of this community’ (2002, 227–8). Ironically, the very site of the monument renders invisible what was once a vibrant community. Deconstruction in and by itself is inadequate. While it unmasks the multiple layers of inequality, deconstruction does not generate praxisbased knowledge from the bottom up. A focus on the latter requires that we break the boundaries of the text and recognize that disenfranchised people resort to multi-voicing, creating spaces to engage a listening/reading audience. To understand these storytelling strategies, it is important to attend to words, metaphors, the language of the body, and social locations. We must recognize that the project of remaking a world is invariably part of a larger project ‘to redefine and recreate the political society’ (Das and Kleinman 2001, 4). The above detour emphasizes the point that Sara’s act of speaking must not be dismissed as a local and discrete event. Sara’s words and the social locations from which she tells her story are part of the political project of unmapping and remaking her world. We are part of this world, both in the way in which we are implicated and as agents of change working with and not for our research participants (Dossa 2004). In this vein let us continue to explore other agentive (voicing) moments in Sara’s narrative.

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Establishing Moral Authority Women have a good understanding of the ways in which they are silenced and subjugated in a patriarchal and racialized social order. This reality prompted the Personal Narratives Group to observe: ‘Traditionally, knowledge, truth, and reality have been constructed as if men’s experiences were normative, as if being human meant being male ... What had been presented as an objective view of the world was selectively the dominant white, male view’ (1989, 3). At the same time, however, we must recognize that women do not constitute a unitary group. Differences such as race, social class, ability/disability, age, and the social contexts in which women’s lived reality are embedded are important. This wider and fuller approach to understanding has brought out a different epistemology, one that provides ‘a distinct method of analyzing gender, nation, state, economy, and society’ (Dua 1999, 8). Sara’s point of entry into this larger context is her stated awareness that no one has shown interest in her life or listened to her story to effect change. Sara is therefore keen to tell her story to elicit a listening/ reading audience. This is the point reiterated throughout her narrative: I want to tell you my story. If it helps someone and if it makes a difference, it will make me happy that I have done a good deed.

The act of listening entails at least four steps. (1) Listening begins with asking questions about the nature of the society in which we live. (2) Listening should lead us to effect change from our particular social and political locations; change can also be effected through language, and the power of words. (3) Listening entails the recognition that change does not follow a unilinear path and need not be confined to the individual; it is necessary to build communities of solidarity where differences are accommodated and not erased in the interests of a singular whole. (4) Listening must validate the ways of speaking that disenfranchised groups use in order to be heard. ‘Refugee stories,’ according to Michael Jackson, ‘challenge the complacency of a culture that assumes that victims of violence in other lands should gratefully and unobtrusively assimilate themselves to the cultural norms of the society of asylum’ (2006, 64). Sara is conversant with this discourse. She takes issue with the fact that refugees are constructed as ‘foreigners’ and as people who will ‘take money from the

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government.’ She tells us that her car accident has held her back from pursuing her career goal. Before the accident, her focus was on getting a job and settling down. Following the accident, she advocates kindness and compassion, qualities that she wants to introduce into her health care related job. When I work I will make sure that I treat other people as human beings. I will be kind and caring. I believe in loving my neighbour like I love my family.

This affective dimension is missing from our health care and social services systems, both of which are premised on a corporate culture where profits and costs take precedence over fostering sociality and human relationships (see Farmer 2003; Scheper-Hughes 1992). Addressing this gap in the system is one way in which Sara claims moral authority. Sara did not reveal the details of her refugee hearing, except to say that it was stressful and unnerving. Outside this event, she told her own story, seeking to validate herself as a genuine refugee. Sara describes how in Iran her life had been at risk: My husband, I am sure he had a sadism because when he beat me, he made me unconscious. I mean I became dull.

Sara’s parents could tell that she was being abused: When they [her parents] came and visited me, they saw my bruised face and hands. I told them that I had fallen somewhere. I had crashed against the wall and did not let them know what was happening. But because they were my parents, they did understand what was going on, and that I was beaten and I did not say anything.

If Sara had not left for Japan to join her sister, she would be dead, because of a man who beat me that much, I would have died easily.

The Iranian state did not protect her. In fact, she was imprisoned for one night when she pushed her husband in self-defence:

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You cannot believe it; they handcuffed me and put me in jail.

Sara escaped from a place where protection was offered to the perpetrator rather than to the victim of abuse. She first went to Japan and then to Canada, where she claimed refugee status. This was a difficult step, as she had to leave her two sons (aged 7 and 11) in Iran. Sara’s husband has full custody of their children. She has seen them only once during a brief visit to Iran, in 2005 (three years after her accident). During my last visit with her, Sara asked me to include the following incident in my study: It was after fifteen years that I went back to Iran. They took my passport at the airport, and they told me that I was not allowed to leave the country as my husband had not granted me a divorce.

Sara was distraught and felt trapped. The issue was resolved when Sara, by sheer chance, found her pending-divorce file number in a letter that her mother had written to her. She adds, ‘We also had to bribe the official.’ It took five months for her to get her passport back. Sara tells that it was hell for her and that she cried every day knowing that if the matter was not resolved, I would have been stoned to death.

Sara’s purpose for sharing her story is to show that we are not lying when we come here as refugees. Canadians must understand that we face real danger in Iran.

Crossing an international border is a highly racialized event in the West. Positioning itself as superior, rational, and civilized, the West has created an apparatus to advance its own agenda: ‘From anthropologists who produced the knowledge about “primitive” cultures that enabled colonizers to justify their colonial projects in the nineteenth century, to present-day social scientists who prescribe a western model of state formation and economic development for the Third World, the west has produced, under apparently neutral scientific categories, the mechanisms for domination’ (Razack 2002, 92). On the construction of racial difference in Canada, Sunera Thobani writes: ‘A number of scholars have observed that the importation of European sovereignty into the

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Americas was based upon a number of myths and fictions: first, the myth of European “discovery” of the Americas; second, the religiolegalistic concept of terra nullius, which legitimated the fiction that the continent was “empty of people” before the arrival of Europeans; and third, of terra incognita, which allowed European sovereigns to “claim underlying title to unknown lands”’ (2007, 46). Through a discourse of superiority (‘it is only we who can bring freedom and democracy to the rest of the world,’ to paraphrase George W. Bush’s repeated remarks) the Western world intervenes in the affairs of the developing world, or Third World, to appropriate its resources. ‘What this means for Third World countries is ecological devastation, population displacement and poverty’ (Thobani 2007, 91). For the West, acknowledging complicity in the exploitation of the Third World and the consequent displacement of populations would amount to acknowledging responsibility and accountability. This is something that the West is unwilling to undertake; hence, it has created an alternative script: Third World refugees are fleeing from the chaos and disorder of their own countries. This framing takes on a gendered dimension when women claiming refugee status must tell exclusive tales of persecution and violence inflicted on them by their own communities and cultures. An alternative story implicating the West would result in these women losing their refugee claim. Sara’s story of marital abuse renders her a genuine refugee. It creates space for her to speak with moral authority. As a signatory of the United Nations Convention and Protocol on Refugees, Canada is obliged to help Sara settle and make a new life in Canada. Even so, Sara took her own step in this direction by undertaking part-time work just before the accident: I took up this job while I was waiting for courses. I do not like to be dependent.

It is from this space of self-help that she relates the incident of spousal abuse. Sara brings to light the gap between her rights as a refugee and what she was offered in practice. What she was offered in practice was nothing less than a body that was both literally and metaphorically scarred – by physical pain and suffering and by her experience of the medical system. From these scars Sara tells her story of how medical abuse replaced the marital abuse from which she sought asylum. Through her violated body – her scars – Sara establishes a connection

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between Iran and Canada, a connection that remains unacknowledged (Dossa 2008). Speaking from the Scars of the Body I tried to go to those courses because my emotional well-being was destroyed. My life was a mess. My husband, being far away from kids and here, I was without a way. I did not know what to do. I had lots of stress. If they [immigration authorities] did not accept me and I had to go back to Iran, I would be killed 100 per cent. So I had no right feelings. But anyway, I tried to keep my energy up, and I always said that let’s see what is happening and go and look for studies. Look for work.

Sara already bore the scars of marital abuse when she came to Canada. She came to a country where she believed she would be able to heal. Her desire to work was so strong that she was willing to undertake further study and then take on waged work even though that meant downward occupational mobility. But this was not to be. A car accident plunged her into darkness, inflicting more scars on her body. The failure by the system to recognize Sara as a person with aspirations resulted in her being rendered an object with only a stigmatized identity of a racialized person with disabilities. ‘Under such circumstances, any inner reflections on who one is, are eclipsed by the external definition of what one is in the eyes of the others’ (Jackson 2006, 68; original emphasis). Yet, we are reminded that people have the capability to recreate their worlds. Even in the case where language falls silent, scars can speak, linking the individual body with the social body. While I agree with Jackson that ‘sharing stories is basic to this reclamation of a person’s humanity – of turning object into subject, givenness into choice, what into who’ (ibid., 105), we also need to pay attention to the how of storytelling – the subject matter of this chapter. In this spirit let us continue with Sara’s story. To repair her back, Sara underwent surgery that involved the permanent insertion of four screws into two of her lumbar vertebrae (L1 and L5). This required her to stay in bed for a couple of months. During this time the welfare office informed Sara that it would no longer support her, as she was expected to find employment. Sara tells us that she was taken aback by what she perceived to be insensitivity and indifference to her bed-ridden condition. She also expresses her surprise that nei-

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ther her doctor, nor her lawyer, nor her welfare worker had told her that she was entitled to disability benefits: My family doctor, she would not tell me that since you are disabled, you can apply for disability benefits. Because I was telling her, Mrs Doctor, I have many problems. If you write me a letter then I go to B.C. Housing and apply there, this is how much I get. Although she was a doctor, and she must have known that, she did not tell me that I could go and apply for disability benefits.

With the assistance of a friend, Sara made a trip to the social welfare office. Sara felt that going there in person would mean that they should see me to understand what situation I was in. So I got there and got a form. But then again they did not tell me that with all these medical proofs and my condition that they could see, you can apply for disability Level 2. So, I applied for Level 1, and I waited for a long time. (Original emphasis)

Sara’s phrase ‘see me,’ meaning her condition/her scarred body – she could hardly walk, brings into relief a point well expressed by Arthur Frank (1995). Frank argues that stories emanating from wounds (scars) ‘create empathetic bonds between themselves [sufferers] and their listeners. These bonds expand as the stories are retold’ (ibid., xii). When the scars ‘speak,’ they bring into relief a sickening social order, within which the condition of the sick person is embedded (Scheper-Hughes 1992). Medical anthropologists have reinforced this point, arguing that placing the onus on the individual to get well absolves society from responsibility (Lock 1993). They have shown that sickness is not synonymous with individualized care, and sickness is not confined to the space of the clinic. Sickness extends into the sinews of society where norms, practices, and spatial configurations contribute to the creation and sustenance of ill health (Lock 1998). Moreover, the provision of health care does not take place on a plane where everyone is treated equally. The provision of health care services in Canada, and elsewhere, is stratified (Anderson and Kirkham 1998). In addition to having a class bias, revealed in the correlation between ill health and poverty, the system reproduces gender and race biases. Women are short-changed, both as consumers and as providers of health care (see, e.g., Morrow et

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al. 2007). This subordinate status in the health care system is transposed to other arenas. With this in mind, we can better appreciate the story that Sara tells from her scarred body. Getting Level 1 disability benefits meant that Sara did not have sufficient funds to live on. She sold her furniture to pay rent. When she ran out of money, she called B.C. Housing: So I told them, ‘Look at my physical condition. I have really nowhere to live. I have no money for rent.’ They told me, ‘We cannot help you. There are many people like you,’ and there I just fainted. Ambulance people came and took me to the hospital.

Knowing that B.C. Housing was her only recourse, Sara kept calling them until they offered her a place on Hastings Street in Vancouver’s Downtown Eastside, which is ‘home’ for the homeless. This was unacceptable to Sara, as she did not think that she could live there being ‘alone and disabled.’ B.C. Housing informed Sara that if she did not take this place, they would strike her name off their list. Sara wonders why she is being treated this way: So I do not know if they do this to Canadians or just because we are foreigners and they do this to us.

Sara did not move into the Downtown Eastside because she had learned from a friend that the area was not safe for women. That she was offered housing only in an area where she could not live safely constitutes social dumping. Sara makes her predicament very clear, saying, ‘I got to the point that I had no place to stay.’ Short of living on the streets, Sara had no choice but to move in with a friend. She moved around so that she would not be a burden on any one person: I stayed one month with my friend, one month with another friend, and one month with another friend.

Sara points out that this is a very uncomfortable way to live, particularly as her ill health made it necessary for her to sleep from morning

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till night. At this time a social worker suggested to Sara that she should apply for disability Level 2. To complete her application, Sara had to go to her family doctor. The doctor omitted to state that Sara’s feet were numb; however, a student doctor noticed this, and said: It is strange that the numbness fact about your feet is not in your file.

Sara’s claim was rejected because the doctor had written on the application that she would recover in six months. A strong letter from a second doctor secured Sara’s claim for disability Level 2. This was good news for her, as it meant she would receive $800 a month, as opposed to $517 (disability Level 1). Sara did not, however, receive this amount for the first month because the welfare office deducted what she had been earning prior to the car accident. She got only $90. The welfare office brought up other issues as well. For one, it insisted that she share an apartment with another woman with disabilities. Sara explained that sharing an apartment with another woman with disabilities would be difficult: I need the service of a bathtub. I have pain all night long, so I need to shower a lot. I can have no roommate, because a roommate needs some comfort.

Second, the welfare office delayed paying her cheque, as they wanted to find out first if the Insurance Corporation of British Columbia (ICBC) had paid her any money. It turned out that ICBC had provided services in kind: a homemaker for four hours a week and visits to a physiotherapist. Third, when it came time to issuing the cheque, the welfare office instructed Sara to go to another office. Sara interprets what transpired like this: They wanted me to wait and suffer by putting in lots of rules.

It was only through the intervention of a friend, fluent in English and conversant with disability policies, that Sara got a cheque for a period of three months. At this juncture Sara reveals personal details about her day-to-day living, which is referred to on the disability application forms as ‘activities of daily life’ (ADL):

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I had a stick, and with that stick thing, I would pull down my underwear to sit on the toilet. And with that stick I pulled my underwear up again. Some days I had a nurse who got me showered. I was in a very bad condition. I could not do anything by myself.

Sara went through more struggles before she was able to get a special bed and a scooter: I phoned every day. I said, ‘My lord, I have done surgery for my back. Why do you not give me a bed that I can sleep on it and get well in six months?’ I said this so many times, and they were saying, ‘Those beds are expensive.’ I have lost my health. So later on they gave me a mattress. They changed it, and it was better. So first I was in a very bad condition.

The scarred body is the site upon which the power of society is reflected. Michel Foucault took the lead in showing how the body in health and illness is subjected to discipline and control through the deployment of societal norms and values (Foucault 1979, 1980). Sara’s body provides testimonial evidence of how power is exercised. Her scarred body speaks of institutional abuse; at the same time, however, through this body Sara implicates society. It is her body, not her words, that speaks. Sara’s body tells the story of how she was sent to the hospital for a traumatized condition whose origins were societal. If the hospital is made to provide refuge for society’s misdeeds, rather than promoting healing, this should cause us to reflect on the nature of the world in which we live. The social worker’s suggestion that Sara live with the homeless shows society’s failure to address larger issues. The personal hygiene incident speaks to the violation of Sara’s – and by extension, anyone’s – rights as a person. It is the body, her scars, that relates this script. Medical anthropologists have brought to the fore the importance of studying the body in resistance. Lock and Kaufert, for example, contend ‘that the body in sickness is a polysemic system, subject to numerous interpretations which are shaped, but not determined by culture. Attitudes towards medicalization can be positive, negative or ambivalent, and in any case are not stable. The response of women to medicalization is often mixed’ (1998, 16). The body does not remain silent.

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Performance as Protest And then the second time, I was waiting for bus Number 97. The driver told me to back up with the scooter in the bus. I said, ‘I do not know how.’ I came in with the head. So I drove with the head. So when I got in, I said, ‘Excuse me. I need help to put the chairs up.’ So he said, ‘I told you to back up into the bus. But you did not do that. Now you can put the chairs up by yourself.’ And me, I am injured in my back. I was like stunned. I was there, and other people there [on the bus] were watching me. And the driver is sitting there. So I said, ‘Excuse me.’ And he did not care at all. So one passenger, he was Hindu, he came and helped to move the chairs. So I got in and put the belt on myself. This is the reason that I did not go out with my scooter anymore, not with the bus. Because I feel that they have no correct relationship with us. Because when I see that two times a driver does this, I think, instead of getting better, day by day, my nerves get broken down. When the driver does not raise the chairs and other people do that, so – let’s not go out with the scooter. And I just use the scooter here in the local area. (Original emphasis)

Olena Hankivsky (2004) makes a case for the inclusion of an ethics of care in social policy and social programs, which is not an add-and-stir process; neither does it occur as a matter of course. She suggests that we examine and deconstruct the principles of liberal democracy, as it is this model that informs social policy. In her book, entitled Social Policy and the Ethics of Care, Hankivsky identifies three issues. First, contrary to the perceived premise, liberal democracy does not rest on a level playing field where everyone is free to advance her or his self-interest; the model is hierarchical, with white males at the pinnacle. Second, the model’s Cartesian dichotomy, especially the public/private divide, creates gender- and class-based inequalities. Third, its emphasis on individualism erases the social interconnections and relationships that make us human. Sara provides an illustrative example of Hankivsky’s critique. Sara portrays an everyday life situation: a woman waiting for a bus. But we have learned that, in Canada, she is not any woman. She is a woman of colour and she is perceived as ‘disabled.’ We have also learned that Sara does not receive assistance from the bus driver, although he would have been trained to serve the needs of all commut-

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ers in the interest of inclusion. The bus driver’s unwillingness to accommodate Sara has an impact on her life. She is rendered a lesser human being and made to feel that she has no right to use the transit system. In reaction to the bus driver’s behaviour (on more than one occasion), Sara opts to remain in her local area where she does not have to face public humiliation. To deal with her hurt, she replays the scene, evidently for an audience. Sara’s account of the bus scenario can be read as an act in a play, as a performance. Susan Hirsch and Mindie Lazarus-Black remind us that performance is an act of protest. They urge us to ‘learn to pay analytical attention to audiences as well as actors, to silences within and between dialogues, to nakedness as well as costume, to scene designers and stage tools as well as sets and props’ (1994, 14). The passengers on the bus in Sara’s story constitute an immediate audience, while she and the bus driver are the actors. As the bus driver has power and Sara is rendered vulnerable, the relationship between the two actors is asymmetrical. What responsibility does the audience have? Does our silence perpetuate social injustice? Sara keeps the dialogue to a minimum, focusing on the unfinished business at hand. We may read the audience’s silence as a blinder that society has put into place to avoid seeing the person beyond her race, gender, and disability – beyond the negative markers of social difference. The behind-the-scenes props encapsulate the wider social world that has as yet not spelled out the message of equality and compassion, systemically and substantively. Lest this be considered too didactic, I invite readers to advance their own interpretation of this performance. It also warrants a second level of analysis, one that gives central space to Sara. In this act or performance, Sara is the actor, the protagonist who speaks to us; she renders visible an event that would otherwise remain unnoticed and unnamed. She replays scenes for an audience: I was there, and other people there were watching me. And the driver is sitting there. So I said, ‘Excuse me.’ (Emphasis added)

She utters these words as a way of asking for assistance and expressing her right as a commuter. Sara’s point that other people were ‘watching me’ can be read as a challenge for action. The ultimate issue is that Sara wants to be seen as an ordinary person, as someone who wants to build her career and get on with life once she is healed. But when she enlists society’s help to do this, she is rendered negatively visible.

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Sara reveals that she was humiliated by the transit incident. Her decision afterwards to stay in her neighbourhood, on Vancouver’s North Shore, where she can move around with the scooter caused her further pain. She was subjected to ‘the look’ and ‘the stare’ from members of the Iranian community, for whom the North Shore is home: People were staring at me. They would stop me and ask me how I got into such a dreadful situation.

The interviewer probes this issue of the community’s reaction to Sara: sara: If you remember, that day you called me. I said, ‘I have fled the North [North Vancouver].’ When in the North, I went out on my scooter, either to the library or just out, and the looks were very much on having mercy on me. I mean the looks. interviewer: Do you mean Iranian or Canadian? sara: No Iranian. Because the Canadian, I do not care. I do not pay attention. I just walk by and leave. But when I look at the Iranians, I see that they watch me with a feeling of mercy. I got very sad. And then I had both the problems of my rent and also health problems ... When I gradually slowly get better, either walk with a cane or a scooter, then I will move back to the North. I feel like emotionally and mentally the North is better for me. Because here [Burnaby], I do not know any place. I do not know anybody here. There is a mall. How many times can I go to the mall? When you go and see a nice dress and you do not even have $20, $10, you cannot even buy a top, your depression gets higher. Your emotional life gets worse. But at least in the North, I can go to my friend’s house. Here I have no one.

To be seen and pitied, or to be not seen and dismissed, is the dilemma that Sara encounters. This scenario is layered. Sara feels more at home in her own, Iranian community. But the terms of reference for her acceptance are that she should have a ‘normal’ body – in literal terms she should not be moving around on a scooter. Sara is excluded from the non-Iranian community on account of her race and gender; her disabled body renders her socially invisible. She is simply not seen as a person. This does not mean that she does not have friends on the North Shore or in the Burnaby area where she was living at the time of the interviews. Our discussion focuses on systemic barriers. It is important not to reduce perceptions of disability simply to cul-

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ture. Canadian immigration policy is implicated in the stares and the looks that Sara experienced (negative visibility), due to Canada’s refusal to admit people with disabilities. The absence from the social landscape of immigrants who have disabilities renders them more abnormal than their non-immigrant counterparts. Being unable to access the transit system, Sara remains in her neighbourhood. Here, she presents two groups of actors: people on Vancouver’s North Shore and people in Burnaby. She portrays each of them in a different light. The first group ‘sees’ her, albeit in a condescending way. The second group does not see her at all. People do not take notice of her; it is as if she does not exist. Sara leaves the audience with this comparative profile but, as in her account of the transit system, she has ‘performed’ for an audience. Sara provides us with the image of a woman moving in the community, isolated and unnoticed as a person. It is this act of performance that implicates society and calls for change. Sara desires to be recognized as a woman, a citizen, and a worker. She refuses to be seen as nothing more than a woman on a scooter (read: an essentialized disability identity). The Eventedness of the Everyday ‘The eventedness of the everyday,’ argues Veena Das, is one way in which we can capture ‘the soft knife of everyday oppression’ (2003, 302). Das argues that it is on this register that we can document a double movement, at the macrolevel of the political system and at the microlevel of families and communities: ‘In other words, I am suggesting that the self-creation on the register of the everyday is a careful putting together of life – a concrete engagement with the tasks of remaking that is mindful of the compound expression – everyday and life. It points to the “eventedness of the everyday” and the attempt to forge oneself into an ethical subject within this scene of the ordinary’ (ibid.). Other scholars have also commented on the importance of examining everyday life for clues in the remaking of the world in the wake of structural constraints. They argue that, far from being a discrete entity, the everyday world is embedded in the larger social order (Das and Addlakha 2001). The eventedness of this world allows us to establish the intricate links between the micro- and the macroworlds (Das 2007). Furthermore, it is in the spaces between these two worlds that we can look for change, effected by the subject. Let us consider examples from Sara’s narrative.

144 Racialized Bodies, Disabling Worlds They do treat me bad. The welfare office I am talking about. It is like this. What they say is that they are giving us unearned money. Canadians also come there. I see their Canadian clothing. I see that a pair of pants one has worn is about $100 value and the runners he has on is $150 value. How come he comes and keeps his head straight, straight up and very well respected? Also, they give his kids chocolate and he gets his money and leaves. But when I go, they treat me badly. Why? Because they think they are giving me alms. But my Lord, this income is for the union. You know if people like me who come here do not face any problem to ask for help for, there would be no office left, and you cannot work and earn money for your life. So, in my opinion, from any class, from any group, from any race, from any religion, people who go to social workers, they [the latter] should be nice. I am a person who likes the fact of being nice because love does not cost anything. You can give love to everyone. Why not give? I was in my country a person, had an occupation. Now it is such that the situation became such that I had to flee to come here and due to all the problems of refugee, emigration, and citizenship, and also this accident, all made me to be delayed for reaching my goal here. I have been disabled for two years, disabled for life. My emotional well-being is ruined. I have got depression and high depression. Now, at 6:00 p.m., I have an appointment with a counsellor, actually a psychologist not a counsellor, because my emotional situation is very bad. I have got high depression. You see, night to morning, I am in this house. How much can I go to doctor and come back ... You see the accident impacted my life strongly.

The eventedness of this passage derives from Sara’s critique of the system. Based on her knowledge of the everyday world of the welfare office, she draws our attention to two distinct groups of people: white Canadians and the racialized Other. Sara considers herself to be part of the latter, and she makes her own case for entitlement. She does not think that it is appropriate that the assistance she receives should be considered as ‘alms,’ given to her grudgingly compared with the dignity accorded to ‘the white male’ (her words). Sara’s embodied knowledge is a springboard for macrolevel reflection. She makes three points. First, she critiques the welfare system for its differential treatment of white males and racialized women – the

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contrast cannot be sharper. Second, she brings out a point put forward by scholars. Middle-class people are able to secure jobs on the backs of service populations, rendered dependent by society (Albrecht 1992; Estes 1979). Ironically, Sara is made to sustain the economy through her status of being ‘unemployable.’ Third, she advocates an all-inclusive policy, premised on the principles of love and compassion. Lest these principles be considered utopian, Chandra Mohanty argues that they are aspects of ‘ethical pedagogy,’ which ‘deepens the spirit, to make more profound the sensitivities of the individual to the universe, and to become more creative’ (2003, 169). Sara’s observations are compelling because she includes a microlevel script that is not always about the resumption of everyday life but about its disruption – its uneventedness. The reader is invited to enter into this space that is poignant and telling: ‘I was in my country a person, had an occupation.’ And, ‘You see, night to morning, I am in this house.’ Sara’s descent from a person to a nobody, along with her confinement to a limited physical and social space, reveals the extent of her rejection by society. Offering another example, Sara recounts: When this pain comes to me, I say that this pain is testing me now. If I have passed all this pain until now, so this pain should not even come to my mind. I try to take that thought of pain out of my thoughts.

She adds: I will have to settle as a pharmacist’s aide.

We have learned that Sara’s pain is accentuated by institutional indifference and insensitivity to the fact that she is recovering from a car accident. Sara has trained herself to live with the pain so that she can pursue her larger goal of building a career, despite a descent from a nurse to a nurse’s aide and then to a pharmacist’s aide. At the time of the study, she was attending college classes, and putting in additional hours to learn computer skills, despite her pain. The juxtaposition of pain and everyday life events (e.g., skills training) shows how Sara rebuilds her world in small ways. Relating what perhaps seems mundane is another means by which Sara retrieves her voice in the face of being silenced and socially unacknowledged.

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Narrating Space I went to my family doctor, the day before yesterday. I said, ‘The medicine you gave me, it probably has a bad effect on my stomach’ ... So she said, ‘Okay, okay, do not take this medication.’ She has given me another medication, Advil. I expect her to give me medicine for my stomach to make me calm in my stomach. But the doctors here do not do that. I think, every time, you go to them, you should talk about one thing ... Now I have to go again. I mean most of the doctors here think of business and not humanness. In my opinion, because I was a nurse in Iran, most of my work was due to the human aspect more than the money aspect. I mean the work we did was humanistic, but here, the humanistic and kindness for people have no value. The only thing that is important to these doctors is how to cut, how much to charge for surgery. And it is not important if this surgery has a positive impact or not. Just to cut and do the surgery, and keep the person for three or four days and kick her out. I mean a patient like me, who did not want to be released after three or four days, I was begging. I mean I could not go to the washroom by myself. ‘Please hold me more.’ My doctor was saying, the government has no more budget. Excuse me, Mrs P, that I say this. It is right that I am here as a refugee, and this government has given me protection. But the refugee thing is an international law, and they have to give refuge. But I wonder how come when people pay 14% to taxes, how can they say the government has no budget to pay for your hospital? Does not the government have budget to keep someone like me in hospital? So where does this budget go? Me, a person who will study tomorrow and go to work, I have to pay 14% to the government. So who is this budget for? This budget is for people like me and others who are at the end of the road. They have to spend it on us.

Space is a social construct closely linked with power. Our location in space and how we experience it is a function of hierarchical relations. In a settler society such as Canada, the founding nations’ claim to the land is based on a spatial narrative. The settlers argued that they developed what was otherwise an empty space and therefore they owned the land, which logically excluded others. Others’ occupation of particular spaces – ghettoized residential areas or sectors of the labour force – occurs according to the terms set by the earlier occupants of the land. This

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explains why both First Nations people and immigrants from the nonWestern world are rendered Other, differentially demarcated in relation to gender, race, social class, and ability. The script of unmapping space is well articulated (Razack 2002a, 2002b). What is less understood is how people resist their subordinate status, in spatial terms. This perspective informs my analysis of ‘narrating space,’ as revealed in the extracts cited above. Sara takes us to the space of the clinic. Here the asymmetrical relations between a racialized woman with disabilities and a medical practitioner exist at two levels: (1) biomedicine, with its institutional power, and (2) the social exclusion of racialized bodies (Ray 1996). From this doubly disadvantaged position Sara introduces the concepts of humanity and compassion. Based on her experiential knowledge of mistreatment, Sara directs her comments at the system. She laments the fact that medical practice has lost sight of its goal to cure people. Its entrenchment in the market economy has led to the dilution of qualities that foster social relations (see also Hankivsky 2004; Kittay 2001). Sara reminds the listener/reader that these are the values that she embodied as a nurse and will likely bring to her new deskilled profession of pharmacist’s aide. It is interesting to note that the loss of her original profession does not make Sara lose sight of the values that she regards as vital for medical practice. This focus makes it possible for her to spatially redraw the boundaries. In her new deskilled profession, she will occupy the space of the Other; but its boundaries will be redrawn by Sara’s commitment to inscribe humane values into her work. To what extent will this lead to change? Sara’s assessment is articulated as follows: When you make people realize that you are treating them with care and kindness, they too begin to act in a similar way. I believe in giving love to every human being. 7

Our next stop is international. Sara reminds us that Canada is a signatory to the U.N. Convention and Protocol Relating to the Status of Refugees and that therefore Canada is obligated as a country to protect her and others in her position. But this has not happened. Sara’s humanity has been compromised in the very place where she sought refuge from marital abuse. Her accident brings institutional mistreatment into relief. Sara is denied reasonable access to social services and health care provisions because of her ‘black hair’ (read: she is nonwhite). Moreover, although it is individual practitioners who mistreat

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her, they follow institutional norms and practices that cast Sara as an undeserving recipient. Sara stretches the boundaries of the Canadian nation-state, thereby questioning the myth of the founding nations. Sara thus claims her rights within an ‘inter-national’ space. The third space to which Sara directs our attention is the labour force. She feels it necessary to spell out her career goal, as it has been subdued by the stereotype that people who have disabilities cannot undertake waged work. None of the practitioners takes her seriously when she states that she wants to get well and undertake waged work. They do not see that she has learned to live with pain in order that she can move forward. I do not want to be dependent on the government.

The space of the labour force contains a paradox for Sara. At one level, she is preparing to occupy the very position that the state has designated for her – deskilled racialized female worker. On another level, it is from this very space that she hopes to restore her sense of worth as a person, reworking the essentialized disability identity that defines her as dependent and passive. It is also the space of the labour force that will allow her to move back into her Iranian community. The strategy of narrating space reveals that people from the margins can rework and give new meaning to power-laden spaces. Sara states that her religion has helped her cope with the crises in her life, especially her accident and its aftermath of societal indifference to her suffering. Sara vividly recalls how her faith in Allah was renewed at the time of the accident. She states that she had died and God brought her back to life. She also tells us that it was her religion that helped her embark on the mission of ‘humanizing’ (her words) the world: I treat people I interact with as human beings.

Sara does not make a distinction between social services and health care providers and the people she meets on the street. Sara emphasizes spirituality rather than religious practice, which is not uncommon in the Muslim diaspora, as Afsaneh Hojabri has shown with reference to the stories of Canadian Muslim women. Hojabri argues: ‘It is crucial to note that for all these women, whether they considered themselves Muslims, practicing Muslims or not Muslims at all, Islamic identity came into play particularly, and sometimes solely, in connection and interaction with the larger society’ (2006, 222). For Sara

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the larger issue is undoubtedly racism. Her experiences after the accident made her aware of how her Islamic/Iranian identity, ascribed by the dominant society, worked against her. Yet, she perseveres in infusing her everyday life with religiousness: When you touch the hearts of people by an act of kindness, they will learn to be better human beings. This is what my religion has taught me.

Like other women in this study, Sara endeavours to change the world in small ways in the spaces within her reach. Her accomplishment can best be understood in the light of Hojabri’s comment: ‘These women actively adjust to new, often harsh conditions, and courageously challenge and transform unequal power relations at personal and public levels; meanwhile, their actions and decisions occur within structural constraints and are sometimes formed by forces beyond their control’ (2006, 232). Concluding Note When Sara came to Canada as a refugee, she had hoped to live an uncomplicated life focused on establishing a career and settling down, even if this meant downward economic mobility. A car accident changed her life. She plunged into another world where she crossed the border from being an able-bodied woman to a woman with a disability, a situation that is further disadvantaged by her race and gender. Sara’s disability rendered her vulnerable to ill-treatment by health care and social services providers. It is important to note that the individuals who mistreated Sara were not connected. Their actions were informed by a system that dismisses her as an undeserving migrant. From her position on the margins of society, Sara tells a story that reveals contradictions and fault lines in the system. She compares Canada negatively to Iran, despite the fact that she was forced to leave her country of origin to save her life. She notes that she was a person in Iran while in Canada her humanity and dignity have been compromised. Like other women in this study, Sara works towards advancing the cause of equality and justice from her particular social location. To engage a listening/reading audience, she resorts to multi-voicing. Understood as a speech act from the margins of society, voice captures not only the words and worlds of the Other. The Other’s voice

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also has the capacity to claim an audience where narrators speak with moral authority based on their experiential knowledge (Das 2004; Frank 2000; Ross 2001; Todeschini 2001). It is in this context that I have presented Sara’s narrative. In the process, I have identified multi-voicing as a strategy used by people who are otherwise silenced and rendered socially incapable to address larger societal issues.

Conclusion: Alternative Spaces – Establishing Connections

In this concluding chapter I discuss the topic of voice to further explicate how disenfranchised populations make their case and how we may respond.1 The women in this study, who are Muslims (a diverse group), have shared their experiences of displacement, forced migration, and resettlement. Each woman’s life experiences are informed by her particular social location. Stories originating from the margins of society have a testimonial dimension by virtue of being grounded in sociopolitical contexts. Mehrun, Tamiza, Firouzeh, and Sara – these women are connected through their common struggles, accomplishments, and aspirations.2 They are, however, well aware that what they have to say is not validated: they are not heard at levels that will effect progressive change. For this reason they resort to multiple strategies to convey their life experiences, whether discursively or through actions. Their work echoes that of other women on the margins of society, who resort to metaphors (Ross 2001, 2003), meaning-centred silence (Visweswaran 1994), strategic storytelling (Todeschini 2001), performance (Das and Addlakha 2001), and multi-voicing (Dossa 2000). The study participants in this book cover considerable ground to show that disability ‘is a cultural interpretation of human variation rather than an inherent inferiority, a pathology to cure or an undesirable trait to eliminate’ (Garland-Thomson 2005, 1557). From their particular social locations, these women also address the issues of gender and race. Below, I examine the three bodies of literature that explore these issues – disability, gender, and race – but that currently are not interlinked. My goal is to give analytical space to women’s politicized and

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experience-based insights, including living Islam in the diaspora.3 I undertake this task in the spirit of exploring ‘the need for a new language of social suffering, one that permits the expression of a full range of experiences, admits the integrity of silence, recognizes the fragmented and unfinished nature of social recovery, and does not permit closure’ (Ross 2003, 165). The challenge is to see how the microlevel realities of life intersect with the macrolevel of the political system to produce a counter-discourse ‘that assaults and even perhaps undermines the flow of takenfor-granted meanings of things as they are. Out of such desperate and defeated experiences, stories may emerge that call for, and even at times may bring about, change that alters utterly the commonplace – both at the level of collective experience and at the level of individual subjectivity’ (Das and Kleinman 2001, 21). Let us then explore the parameters of the literature to identify points of intervention suggested by the women of this study.4 Disability Studies Central to disability studies is the social model that emerged in reaction to the medical model, with its emphasis on disability as abnormal. Implicating society for its failure to recognize the differing abilities of human beings, the social model has been instrumental in putting disability issues on national and international agendas. Its focus on reversing the long-term exclusion and social marginalization of persons who have disabilities has fostered an understanding of persons with disabilities as social beings, not merely patients or clients (Cossette and Duclos 2002). The argument that persons with disabilities have a right to live with dignity and respect like other citizens cannot be overemphasized. As Eva Kittay has emphatically pointed out: ‘Disabled persons have worked hard for the right to live independently, to have access to work that suits their talents and temperaments, to be included among the “productive” and contributing members of society. They have insisted on their dignity, a dignity that refuses to be an object of pity and charity’ (2001, 569). The social model of disability gained acceptance largely through advocacy and consumer empowerment movements, resulting in noticeable advancements for persons with disabilities. In Canada, a liberal democracy, the rights of people who have disabilities to live and

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work in the community is enshrined in policy and through the efforts of community-based organizations. There are, however, structural limitations. First and foremost is the fundamental fact that, despite their promise of equality and social justice, liberal democracies are inherently inequitable. Their construction of an ideal citizen as an independent, rational, able-bodied male precludes equitable and just treatment for all. Racialized minorities, women, and persons with disabilities are substantively disadvantaged. Here Patricia Collins’s comment on the status of African-American women is relevant: ‘On the one hand democratic promises of individual freedom, equality under the law and social justice are made to all Americans. Yet on the other hand, the reality of differential group treatment based on race, class, gender, sexuality and citizenship status persists’ (2000, 23). Second, the market-oriented focus of liberal democracies gives low priority to social provision, which is chronically underfunded. In such a situation of scarcity, those who contribute to the market economy garner greater attention. The uneven distribution of resources creates divisiveness based on ‘deserving’ and ‘undeserving’ citizens, with the undeserving further divided and categorized as a result of gender and racial discrimination. Furthermore, the market focus of liberal democracies creates an ironic situation: disenfranchised populations are rendered dependent in order to maintain a service industry for economic growth, while at the same time these populations are stigmatized for their perceived failure to become independent (Albrecht 1992; Estes 1979). The economic restructuring in the 1990s through downsizing and privatization has rendered these entrenched inequalities visible. In the case of people who have disabilities, Lyn Jongbloed notes: ‘Cuts to social assistance, employment insurance, disability pensions and community-based training are evidence of this shift, and all of these unquestionably have stronger financial impact on persons with disabilities’ (2006, 246). As the concept of hegemony suggests, no system is all encompassing or totally dominant. With its focus on process and contention, hegemony suggests that power is entangled with oppositional forces and spaces of resistance. Margaret Lock and Patricia Kaufert (1998) have cautioned that we should not imagine spaces of resistance as discrete, isolated locations. Spaces of resistance exist in the midst of the system. Regardless of what stance oppositional forces take in the form of conformity, opposition, or juxtaposition, they do not merely subvert the system. Their goal is to effect progressive change. It is in this context

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that we can appreciate the work of self-funded organizations such as the DisAbled Women’s Network (DAWN-RAFH). Since it began, this organization has addressed gender bias through public forums, conferences, and an impressive array of publications. The regionally based Ethno-Racial People with Disabilities Coalition of Ontario (ERDCO) has also undertaken important work, although it has not been able to advance its goals owing to budget constraints. Other organizations such as the B.C. Association for Community Living and its national counterpart, the Canadian Association for Community Living, have directed their attention to addressing specific kinds of disabilities. In sum, having fostered an awareness of how society disables people through attitudinal, physical, social, and architectural barriers, the social model has brought to the fore the issue of justice. The gains, however, have been partial, fragmented, and discriminatory, as a result both of structural factors and of a hierarchical system that has yet to substantially accommodate the needs and aspirations of racialized women, and men, with disabilities. Their marginalization is compounded by the intersection of race, gender, and disability, and by Islamophobia in the case of Muslim women. Antiracist feminism has endeavoured to correct this situation, but substantively, racialized women with disabilities continue to be excluded. Antiracist Feminism The concerns and aspirations of racialized women with disabilities are not addressed in disability studies or in the literature on women and disability (Garland-Thomson 2005). At the same time, they remain peripheral in antiracist feminist literature. If disability is given attention as an additional marker of difference, it is approached in an ‘addand-stir’ manner. This situation forestalls the creation of an epistemological space where the women are recognized as active subjects engaged in recreating their worlds, alongside, in opposition to, or within dominant systems. Antiracist feminist literature has broken new ground, revealing multiple forms of exclusions embedded in the nation-state and its institutions. For example, Yasmeen Abu-Laban (1998), Himani Bannerji (2000), Enakshi Dua (1999), Sunera Thobani (2007), and Habiba Zaman (2006) have all argued that we need to problematize the narrow definition of who is a Canadian. Otherwise, we will continue to have two categories of citizens: those with substantive citizenship rights (the white popula-

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tion) and those with lesser rights (hyphenated, racialized Others). Antiracist feminists note that the process of exclusion is a function of Canada’s history of colonialism as a white settler society. In this history, First Nations people are relegated to the status of outsiders, as people who occupied ‘empty’ lands that were developed by white settlers. Racialized minorities, on the other hand, are constructed as foreigners, desirable for their labour only, not as full citizens. Dua puts it this way: ‘Both the historical and the contemporary locations that women of colour occupy in Canadian society have been shaped by multifaceted racialized, classed and gendered processes that made Canada into a white settler society’ (1999, 7). Canadian antiracist feminists, who do not exclude white women, have been engaged in the project of deconstructing gender, race, and class relations. By bringing an analysis of race to feminist theorizing on the nation-state, citizenship, and the economy, they provide a different lens for looking at issues of inequality and social injustice (Dua 1999; Thobani 2007). Bannerji (1995) shows how common-sense racism can become normalized as an accepted practice that is not questioned or interrogated. Gayatri Spivak (2006), on the other hand, focuses on epistemic violence, which silences women of colour by means of dominant discourses. Antiracist feminism has also documented how a racist immigration policy disadvantages women by admitting them into the country largely as dependents – a position that renders them vulnerable to spousal abuse (Agnew 1996; Jiwani 2006). Tied to Canadian labour market needs, these women occupy a ‘split’ position between those who have better-paying jobs and those with poorly paid jobs (Boyd 1991). Women in the latter category are subject to a process of deskilling that minimizes or erases their professional qualifications (Ng 1996; Zaman 2006). In short, antiracist feminism has offered a ‘critical analysis of Canadian history and Canadian institutions to interrogate the ways in which the nation-state and its institutions racialize, gender, and class women of colour’ (Dua 1999, 24). This body of thought provides, then, a study of compounded social inequality. It focuses on deconstructing the historical and sociopolitical factors that disenfranchise women of colour, materially and discursively. So far, I have examined the parameters of two bodies of literature: disability studies, with a focus on the social model, and antiracist feminism. Both have been instrumental in effecting paradigm shifts. The shift from disability as individual pathology to disability as a social

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construct has resulted in some gains for persons who have disabilities. Their citizenship rights are constitutionally entrenched and, ideally, they are entitled to live and work in the community to develop their full potential as human beings. These goals, however, have not been fully realized. Along with the confining parameters of liberal democracies, budget constraints and economic restructuring have created major roadblocks. No less daunting are cultural perceptions that view people with disabilities as the Other, that is, less than human. Antiracist feminism has identified multiple and structural factors that disenfranchise women. It has deconstructed the processes by which systemic and institutional racism oppress and exclude people on the basis of race and gender. As Jo-Anne Lee and John Lutz argue, ‘racism is knotted into the fabric of state discourses, practices, and ideologies and is thoroughly institutionalized and systematized’ (2005, 14). The struggle to achieve justice and equality continues and has been heightened in the current climate of the U.S.-led war on terror (Thobani 2007). While disability studies have begun to recognize gender to some extent, this field has yet to deal with the issue of race. Likewise, antiracist feminism has yet to give adequate space to disability and accommodate it conceptually as a field in its own right, rather than as a subfield within existing bodies of work. Enakshi Dua’s (1999) argument – that the inclusion of racial analysis within feminism will provide a different entry point to the interrogation of the nation-state – must be extended to include disability. The resultant pluralistic approach can lead to a more enhanced understanding of the workings of power (structure) and the ways that people remake their worlds (agency). The question is, how do we perform the epistemological task of identifying the contexts where the meaning of citizenship and what it is like to be human are inclusively defined? Henrietta Moore (1988) suggests an interdisciplinary dialogue. Noting the conceptual omission of women in ethnographic studies, she calls on anthropology to dialogue with feminism to incorporate gender and address how it engages dynamically with class and race. At the same time, Moore calls on feminism to incorporate anthropological insights about difference derived from the discipline’s grounding in non-Western societies. She calls this ‘the story of a relationship.’ The disconnected terrains of disability, race, and gender can benefit from this conceptualization. Disability studies could nurture a more pluralist framework that would add depth and breadth to its work on social justice. Interrogating and deconstructing multiple forms of exclusion, such as racism, can provide a sharper political edge. Antiracist feminism can

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incorporate the difference of disability only by questioning the deeply seated premise that including disability (read: dependency) will compromise antiracist feminist work. In other words, a reflexive and pluralistic social model of disability together with antiracist feminism can provide nuanced understandings of the forces of oppression and exclusion. Furthermore, it can throw light on how people remake their worlds in the face of structural barriers. While such an integrated framework is desirable, it has yet to be achieved. Revisiting ‘The Story of a Relationship’5 The women in this study recognize that their exclusion and marginality are a result of social and structural factors. They advance the point that disability does not reside in their bodies, a point encapsulated by Firouzeh: the loss of one’s legs must not translate into an exclusive disability identity. To varying degrees, the women realize that their minority status (race and gender) has rendered them more vulnerable. In other words, having a ‘disabled’ and racialized body (negative markers of difference) means that their life opportunities are reduced. All the women struggle to claim their citizenship entitlements. Mehrun carries out her activist work from the site where she was first hospitalized, while Tamiza addresses the issue of social provision as entitlement. Firouzeh reclaims her multiple identities to assert that she is a person like anyone else. In the wake of her experiences of dehumanization in the social services and health care sectors, Sara resorts to multi-voicing to convey the message that she is human and determined to live a fulfilling life. The women’s antiracist feminist work is carried out in the midst of their struggle to claim their humanity, both in terms of life opportunities and of personal relationships. The latter are not given equal emphasis. The importance of personal relationships is captured by Kittay, when she writes: ‘I propose that being a person means having the capacity to be in certain relationships with other persons, to sustain contact with other persons, to shape one’s own world and the world of others, and to have a life that another person can conceive of as an imaginative possibility for him- or herself’ (2001, 568). Islamic Heritage To achieve a sense of personhood, the women in this study draw upon an indigenous resource: Islamic heritage as it is embodied in everyday

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life. To understand how they rework Islam to be meaningful for them, we must examine the larger context. Like other Muslims, these women are well aware of negative perceptions of Islam in Canada and in the Western world generally. In Muslim Diaspora: Gender, Culture and Identity, Haideh Moghissi (2006) argues that the formation of a diaspora and the need to belong to faith-based communities are not exclusively informed by migrants’ desire to maintain their cultures abroad. The host society’s reception of newcomers plays a significant role in their adaptation to a new environment. In the case of Muslims, the active presence of Islamophobia and racism are critical issues: ‘But both the currency of the term “Muslim diaspora,” and the increasing tendency of these communities to episodically or consistently band together, may have at its core more a political than a cultural impulse. That is to say, it is based less on historical commonalities founded in the values, religious affiliations and languages of originating countries and more on urgent contemporary and common concerns and grievances that these diasporic communities experience in relation to the host society in which they live’ (ibid., xiv). Commenting on the position of Muslims in Canada, Saeed Rahnema identifies a paradox: ‘The point is that in Canada, as in other parts of the western world, prevailing racism and discrimination continue to marginalize Muslims; the more marginalized they become the better the chances are that they will turn to religion and, in some cases, to Islamism, which is fed by radical ideologies produced both in Islamic societies and in the diaspora. Stronger religious and Islamic tendencies, in turn, invite more Islamophobia, contributing to further marginalization’ (2006, 35–6). The above authors bring home the importance of delineating the sociopolitical context. Simultaneously, it is within this context that women’s agency may best be understood, as Saba Mahmood (2001) has shown in her work on the women’s mosque movement in Egypt. Mahmood emphasizes the importance of addressing religious difference. She notes that, although feminist theory has begun to take account of sexual, racial, class, and nationality issues, ‘questions of religious difference have remained relatively unexplored in this scholarship. The vexed relationship between feminism and religious traditions is perhaps most manifest in discussions of Islam’ (ibid., 202). Mahmood attributes this neglect to two factors. First, historically, Islam and the Western world have not enjoyed an amicable relationship, and second, the secular orientation of Western liberal democracies is threatened by contemporary Islamic movements. Mahmood cautions

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us against reading the mosque movement’s focus on the ‘teaching and studying of Islamic scriptures, social practices and forms of bodily comportment considered germane to the cultivation of the ideal virtuous self’ (ibid., 202) as women’s internalization of their historically subordinate status within Islam. She draws our attention to how women exercise agency through their fresh engagement with Islamic scholarship, a previously male sphere. In documenting this non-liberal Islamic movement, Mahmood questions ‘normative liberal assumptions about freedom and agency against which such a movement is held accountable’ (ibid., 203). She argues that fostering a gendered Islamic virtue must be viewed politically, as it constitutes an alternative space where women are active players. They revive the everyday practice of Islam that has been ‘marginalized under modern structures of governance’ (ibid., 204). ‘The women’s mosque movement, therefore, seeks to educate lay Muslims in those virtues, ethical capacities, and forms of reasoning that the participants perceive to have become either unavailable or irrelevant to the lives of ordinary Muslims’ (ibid.). Mahmood’s findings suggest that religious traditions, despite their association with patriarchal domination, may be redeployed to further women’s interests and aspirations. She argues that we should be mindful of how women’s complex agency may subtly challenge male or other forms of domination. The women in this study undertake a similar task. Through what Saktanber (2002) refers to as ‘living Islam,’ the women drew upon enabling aspects of their religious tradition to reverse their social oppression, despite structural constraints. Working to deinstitutionalize the lives of persons with disabilities, Mehrun emphasized internal values: ‘Religion should focus more on the emotions and the spirituality of the person’s internal values.’ She believes that these qualities would humanize the lives of persons with disabilities: ‘If they are considered as human beings, they would be treated more equally.’ The strength of Mehrun’s argument is articulated as: ‘Just because you are disabled, it does not take away from the fact that you are a person. Society should pay less homage to being physically perfect and concentrate on inner values.’ Mehrun gives the example of social services. Their focus on part of the person, she feels, diminishes a person. Religion, for her, directs our attention to the whole person. Referring to specialized programs, Mehrun observes that they are so specialized that sometimes you get put into a category that you don’t belong in, like for example, people are treated as though they

160 Racialized Bodies, Disabling Worlds have developmental disabilities, whereas they may only be borderline and need a little bit of assistance. There is no in-between.

Further emphasizing this lack of attention to her as an individual, as a human being who also has ‘emotional needs,’ Mehrun reports: Even when you apply for anything having to do with social services or independent living, they don’t look at your emotional needs. They only look at how much time you need for your personal care and how much time you need for this or that. They don’t look at your recreational activities because that is considered a luxury. It is just your basic needs that are considered. Whereas I think that in Eastern culture, we focus more on the emotions and the spirituality of the person’s internal values.

Tamiza reveals that her point of intervention is the in-between space of her own community and the larger society. On both fronts she strives to have her children recognized as persons and not merely as disabled. She wants her community to acknowledge the difference of disability as a human and spiritual condition; within the larger society she wishes her children to be recognized as persons whose identity as Muslims bears the mark of a historical tradition with humane values. This is her interpretation of living Islam. Firouzeh and Sara bring to the fore aspects of Islam embodied in everyday life. Sara reads the Qura’n and Firouzeh prays. Both women state that Islam helps them to cope with everyday struggles and that this tradition has inspired them to be good human beings and good Muslims. Sara is determined that when she undertakes waged work, she will treat other people as human beings, not as clients or patients. She is training to work in the pharmaceutical industry. Both women believe that their behaviour in public life will serve to counteract the negative Western views that diminish the Islamic tradition to two circulating images: terrorism and the oppression of women. In sum, the testimonial narratives of the women in this study reveal their struggles to live interdependently in a world where social relationships are paramount. Defining their own identities, they struggle to live lives filled with meaning. They desire to live with dignity and respect; for this purpose they present themselves as subjects in and narrators of their own stories. Rendered vulnerable on multiple fronts, the women nevertheless

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define their identities in positive terms and claim a humanity that is denied them both in everyday life and when accessing health care and social services. Although these women are well aware of how intersecting categories have disadvantaged them, they do not want their activist work, broadly defined, to remain within the discrete spaces of their cohort. They identify the fault lines, gaps, and polarities within the dominant system. None of these women wishes to be seen as belonging to a ‘special group.’ For them, the intersecting inequalities based on race, gender, and disability must be addressed systemically and institutionally, rather than in a discrete space where their concerns would remain marginal. In the process of telling their stories, the women highlight experience-based knowledge, including that derived from their religious heritage. In the anthropological spirit of drawing from a comparative perspective, I present insights from Collins’s work on African-American women: ‘Oppression describes any unjust situation where, systemically and over a long period of time, one group denies another group access to the resources of society’ (2000, 4). Collins’s observations on the factors affecting African-American women are relevant to the situation of racialized women with disabilities. First and foremost is the economic dimension of oppression, encapsulated in the symbol of ‘iron pots and kettles,’ representing ‘Black women’s long-standing ghettoization in service occupations’ (ibid.). Racialized women with disabilities experience this type of oppression through economic exclusion and the denigration of their abilities. The second dimension of oppression is political. It excludes women from equitable treatment in such areas as education, housing, and political office. The third dimension is ideological, whereby the interests of the dominant group are privileged. Here, cultural, racist, and sexist ideologies permeate the social structure to such an extent that they become hegemonic; that is, they are seen as natural, normal, and inevitable. Taken together, the combined dimensions of economy, polity, and ideology function as a highly effective system of social control designed to keep African-American women in a subordinate position. The women seek to reverse this entrenched oppression. It is in this vein that the women in this study undertake their social justice work. The women’s work carried out in the nooks and crannies of everyday life is much more complex than what I have been able to convey in the pages of this book. Each woman has attempted to convey her struggle for equality and social justice in conversation with others. This process is facilitated through storytelling, a collective endeavour.

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Stories are told to others, particularly to a listening/reading audience. Stories contain ideas that are ‘communally wrought, not privately owned’ (Mohanty 2003, 1). The women’s vision for a just world may appear to be in the way of everyday struggles, but this is not without significance. As Mohanty states, ‘everyday feminist practices are as important as larger organized political movements’ (ibid., 4). In short, the women in this study are not merely telling stories. They are engaged in political work. Each woman critiques the system. How can she do otherwise in the face of the social oppression of people with disabilities, and the compounded effects of gender and race? For these women, political work takes the form of context-based initiatives. As already mentioned, the women in this study do not see themselves as working from discrete spaces. They state repeatedly that what they have to say is relevant to ‘other people.’ Veena Das and Arthur Kleinman also note that ‘in speaking for oneself, one speaks for the other’ (2001, 21). Finding a voice in community with other voices is never a local affair. ‘In fact, it is simultaneously an attempt to redefine and re-create the political society’ (ibid.). The story of the relationship between disability studies and antiracist feminism, then, entails broadening the parameters of both models to foster the image of sociality and the connectedness of spaces and people. Each woman shared the following examples for inclusion in this study. Mehrun (author) I would like to see people being treated as equals. And again people remembering that this could be them. I would like to see accessibility as a priority. I would like to see a change in attitude and less stereotyping of disabled people. I would like to see people concentrating on the abilities of the person rather than the disabilities of the person. I would like to see more information on different disabilities – people taking an interest in looking beyond the physical and learning more about the person. I would like to see a just health care system. Meaning that if you need something then it is there for you, with not so much focus on the cost. I would like to see probably the evolving of myself. I am directing my own life towards being seen as someone who not only knows what I want

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but can advocate for other people. It is the personal growth, the independence, and trying to keep the two cultures balanced. Disabled people have refused to say that we are victims or dependent. We are important in terms of our opinions, and our way of life is important. As people we are important.

Tamiza Tamiza provided two anonymous quotations: I Am the Child Who Cannot Walk The world sometimes seems to pass me by. You see longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the top shelf. I need to go to the bathroom ... oh ... I’ve dropped my spoon again. I am dependent on you in these ways. My gift to you is to make you aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me. I always notice them. I feel not so much envy as desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I Am the Child Who Is Mentally Impaired I don’t learn easily, if you judge me by the world’s measuring stick. What I do know is infinite joy in the simple things. I am not burdened as you are with the strife and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity.

Sara (author) Poverty The breeze is blowing now The Spring is on its way Some trees have blossoms

164 Racialized Bodies, Disabling Worlds Swallows will return again And will make nests And will sing The first day of Spring is New Year Some children are in poverty No new shoes, dresses or even sweets to eat I hate poverty No body thinks about these innocent flowers No body makes their dream No body wants to believe they are human What is the result of this Spring? Every year Spring comes But they don’t have Spring We can have a New Year every day Help people to make them happy I believe All humans are part of each other Creation is made from one jewel If one member is hurt by the world The other members can’t have peace.

Firouzeh Firouzeh shared a photograph of her family: her two youngest children, her husband, and herself (not printed for reasons of confidentiality). She and her husband state that their wheelchairs are parts of their bodies and that they take pride in raising four children, ‘like other parents who are not on wheelchairs.’

Notes

Introduction 1 Bannerji emphasizes the point that undesirable others ‘are discursively inserted in the middle of a dialogue on hegemonic rivalry’ (2000, 96). 2 Wolf’s (1996) discussion on power is of value. She links power dynamics in the field to structural factors, revealing how the researcher’s relationship in the field is not a discrete phenomenon. 3 The interface between structure and agency has been problematized in anthropology. An undue focus on the structure fails to capture the workings of agency and vice versa (Scheper-Hughes 1992). I argue that the genre of stories, complemented with the life course perspective, helps to reduce this tension. Stories show how structures shape and are shaped by lived realities of people. 4 I would like to note that both communities contain multiple religious and ethnic minorities. My research participants, however, are Muslims – a heterogeneous group. The women themselves chose the names used in this study. 5 The activist work of each of the women is a collective endeavour (Collins 2000; Mohanty 2003). 1 Mapping the Methodology and Sociopolitical Contexts 1 This is very much in keeping with the tenor of ethnographic research. The emphasis is on understanding issues and concerns as they appear at particular moments in the field and within interactive contexts. 2 The term diaspora is understood in a nuanced way to address complex global networks and connections of immigrant communities. It also encompasses responses of host countries towards newcomers.

166 Notes to pages 16–31 3 My usage of storytelling, as a genre in its own right, has been employed throughout the text to show how women exercise agency in the wake of structural barriers. 4 The resolutions are cited from the edited volume, Disability and Social Policy in Canada (M. McColl and L. Jongbloed, 2006). Excluding gender and racialized minorities, this work captures the state of the art on disability in Canada. 5 I have drawn extensively from this work as it captures substantive issues on gender and disability. Although Fine and Asch (1988) refer to race as a marker of difference, it is not given central emphasis; see also GarlandThomson (2005). 6 Note that ERDCO is regionally based and its major work in the form of a report, ‘We Are Visible’ (1996), focuses on health. This example reveals the limited space given to the concerns of racialized women with disabilities. The report’s findings on how race, gender, and disability impact on the health of these women and disadvantage them at multiple levels have not been substantively implemented. 7 I have cited the mission statements of both the organizations (DAWNRAFH and ERDCO) to acknowledge their work carried out in the wake of budget constraints. DAWN-RAFH, ‘Mission Statement,’ 2008; ERDCO, ‘Our Mission Statement,’ 2004. 8 De Groot (1996) calls for structural transformation without which progressive change cannot occur. 9 I have included a note on neoliberal restructuring, as the changes it has brought about are deeply rooted and impact negatively on the lives of disenfranchised populations. The latter are subject to further marginalization through shrinking of the social safety net, downsizing, and privatization. 10 The discussion on storytelling is drawn from my work: The Politics and Poetics of Migration. 11 Having laid out the contours of the life course perspective, I take it as a given part of storytelling. I have therefore not revisited it in the interest of presenting an integrated framework of analysis. 2 The Difference of Disability 1 Note how Mehrun identifies herself. By stating that ‘I am a woman with polio,’ she foregrounds her identity as a woman. In this work, my focus is not on particular kinds of disabilities. My concern is to address the social construct of disability.

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2 Mehrun does not portray a nostalgic image of life in her country of origin. She expressed reservations on being rendered dependent on her family. It must also be noted that there are no reified cultural perspectives. The lives of persons with disabilities are informed by complex factors that are at once cultural, economic, social, and political. 3 My goal is to show the social implications of scientific research. 4 All the references from the newspapers are derived from Lalani (1997). Although this was 35 years ago, racism and racialization (process) remain active (Jiwani 2006). 5 My focus is not on the disease model but on the social construction of ‘disability,’ a point that needs to be reiterated. 6 Although of Muslim background, the women in this study did not elaborate on the subject of ‘the practice of their faith.’ They all claimed that they had spiritualized their faith in a way that was relevant to their lives. Their reluctance to discuss their faith is a function of the demonization of Islam in the West. They offer their own interpretation of Islam, a spiritualized understanding. 3 Narrative Moments from the Margins 1 I do not underestimate the dilemmas and complexities that arise from the need to give space to the voices of the research participants. But it is also necessary to present the sociopolitical context. In such a situation, we may weave in and out of the narrative data and insights from the literature. This is the approach I have taken with the caveat that I have attempted to recognize research participants as producers of context-specific knowledge. 2 This narrative forms the backbone of this study; hence, it is reiterated throughout the text. 3 This is a detour. It is necessary to provide this context to give a sharper edge to what Tamiza has to say about her embodied experience of raising two children who have disabilities. 4 I do not want to suggest that Tamiza is altruistic. The issue is that she reworks the dominant narrative to introduce an element of intersubjectivity. 5 I have met Tamiza’s children. Ethics protocol and the fact that my focus was on women forestalled my interviewing them. 6 We need to emphasize that Tamiza struggles to secure social provision for her children. It was this very struggle that made her realize that services are entitlements and that her children did not have to wear the label of ‘disability.’ She wishes that society would recognize them as ‘good Canadian Muslims,’

168 Notes to pages 91–111 which she equates with being good human beings. She identifies herself as a caregiver/mother to her ‘disabled’ children, a waged worker, a wife, and an advocate for persons with disabilities. Tamiza recognizes that her struggles are compounded because of her race (she is the Other/an immigrant woman). Her hard work to secure services for her children makes it possible for her to identify demedicalized and alternative spaces that go beyond the diagnoses of ‘disability.’ Like other women in the study, Tamiza presents a testimonial narrative. 7 This is the point emphasized by the women in our study and also in the literature on disability, gender and disability, and antiracist feminism. Note how these three bodies occupy separate spaces. An interface between these bodies of work has yet to take place. 4 Writing Dislocation: Telling Her-story 1 Writing Dislocation is used in a double sense. First, the term dislocation suggests rupture resulting from forced migration. Second, dislocation refers to the process of rebuilding lives, both in terms of tradition (understood as dynamic) and new beginnings. The emphasis is on human agency exercised in the wake of social constructs. 2 Storytelling, as noted in this book, is recognized as a genre of research standing on its own ground. It is not merely a methodological tool. It has epistemological value. Stories are generated interactively – moments shared with research participants. 3 Anthropologists recognize the importance of connecting the local to the global, advancing the point that nation-states are not discrete entities (see, e.g., Ong 1995a, 1995b). Everyday occurrences reveal the intricate connection of the local to the larger systems of power. 4 I want to emphasize the point that societal norms and practices make their way into what we consider to be the private sphere of home. The latter, however, can also inform the larger system to effect progressive change. 5 Note how Firouzeh spiritualizes her faith. She does not talk about Islam per se. Her reworking of the meaning of religion is in line with her ‘project’ of remaking her world following her accident. 6 This is a defining statement that she reiterates throughout her narrative. 7 It is not my intent to homogenize disability issues in Canada or Iran. I have presented a contextual reading from the narrative. 8 It is interesting to note that it is this very rationale that has led minority scholars to overlook the concerns of racialized women with disabilities. 9 I do not hold individual social workers to be solely responsible for their indif-

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ference and insensitivity. They represent the system where immigrants and racialized minorities are the Other. 5 Women as Subject: Multi-voiced Narration 1 Multi-voiced narration is a mode of storytelling to invoke a listening audience. As Ross (2001, 2003) and Todeschini (2001) have shown, marginalized people resort to this strategy in order that they may be heard. 2 Waiting is not merely a function of bureaucratic inefficiency. It is systemic and serves as a stalling technique for servicing people considered as having lesser citizenship rights. 3 Refugees are an anomaly (Malkki 1995). This is the reason Sara receives scant resources to heal from the car accident. To exasperate the situation, she is dehumanized and humiliated – aspects that she relates in her narrative through multi-voicing/multiple strategies. 4 Note that Sara does not implicate her employer despite the fact that it is not common to travel to another office to pick up a paycheque. As a refugee applicant she is systemically rendered vulnerable. 5 To provide generous contextualization, I weave the narrative data into insights from the literature. This approach brings home the reality of pain and suffering. 6 I reiterate this point, as it provides the larger context that remains unchanged. It is the historical reality. 7 It is interesting to note that Sara’s emphasis on kindness and compassion is reflected in emerging scholarship (e.g., Hankivsky 2004). Conclusion 1 Ross (2003), among others, argues that the issue of voice must not be taken as given, particularly in the case of women. Women resort to multiple strategies to ensure that they are heard. This point is expounded in the body of my work. 2 It is on the basis of common experiences that their stories are testimonials. It is important to note that testimonials give a sharper edge to individual stories. 3 I use the term living Islam (Saktanber 2002) to convey the agency of women in reinterpreting their faith. 4 My goal is to situate women’s insights in the context of three bodies of literature: disability studies, antiracist feminism, and Islam in the diaspora. The latter is vast and varied and therefore I have focused on selected and relevant works.

170 Notes to page 157 5 Throughout this concluding chapter, I have reiterated points mentioned earlier in the book. It has been necessary to do this for two reasons: (1) to integrate insights of the study participants into the literature and (2) to explore the possibility of dialogue and discussion within bodies of literature that otherwise remain separate from one another.

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Index

Abu-Laban, Yasmeen, 3, 154 activism, 6–7, 31–2, 60–1, 161–2; performance as protest, 140–3; spaces of resistance, 153–4 activities of daily life (ADL), 47, 138– 9 Advancing the Inclusion of Persons with Disabilities, 18 aging, 100 Albrecht, Gary, 13, 46, 68 Allen, Chris, 15 alternative spaces, 68 Anderson, Joan, 129 anthropology: dialogue with feminism, 156; medical, 78–9, 136, 139 antiracist feminism, 19–20, 21–2, 27, 154–7 Asch, Michelle, 104; Women and Disabilities, 19–20 Association for Community Living, 154 Atkin, Karl, 4 attendants (care attendants): client– attendant boundaries, 49; with family care at home, 38–9, 49–50, 81; female caregivers for women, 35–6; in group homes, 46–54, 55; as

low-level employment, 46–7, 69; privacy issues with, 50, 52, 54; private vs shared care, 49–50, 54; scheduled routines of, 53 autism, 64, 65, 71–2; Autism Society of America, 71–2 Bagguley, Paul, 73–4 Bannerji, Himani, 13, 22, 154, 155; Thinking Through, 21 Benson, Michael, 29 biomedical intervention, 39 biomedical model of disability, 16– 17, 71–2, 78–9, 87, 96, 110 boundaries: and analysis of stories, 25, 27; blurring of, 116; client– attendant, 49; international, 133 Brodie, Janine, 23 Canadian Council of Refugees, 15 capitalist system, 68–9, 96, 123 Casey, Kathleen, 26 Cheungsatiansup, Komatra, 14–16 children of women with disabilities, 99–101, 104–5 children with disabilities, 64–7, 71–91; and disability identity, 88–9; dis-

186 Index course of tragedy and vulnerability, 75–80; in institutional settings, 12; medical attitudes towards, 76–7; nannies for, 81, 82; presence and role in the community, 79–80, 81–2; social services for, 7, 12, 22 citizenship: citizen worker, 23; dominant notion of, 42; for persons with disabilities, 156; for refugees, 121; rights of, 72–3, 75, 157; special claims citizen, 23; two-tiered structure of, 23, 154–5. See also human or citizenship rights Cohen, Lawrence, 100 Collins, Patricia, 29, 153, 161 colonialism and imperialism, 123, 133–4; Canadian white settler society, 129–30, 146–7, 155 Colour of Democracy, The (Henry et al.), 113 common-sense racism, 155 community: children with disabilities in, 79–80, 81–2; community integration movement, 45, 65–6; Iranian community in Canada, 5, 10, 13–14, 142, 160; Muslim identity in, 72–5; persons with disabilities as part of, 47–8, 100–1, 110; religion and spirituality as, 88–9 community activism, 60–1 conversational mode, 126–30 Corker, Mairian, 16 Council of Canadians with Disabilities, 113 Cruikshank, Julie: The Social Life of Stories, 25 daily needs (activities of daily living, ADL), 47 Das, Veena, 5, 73, 97, 128, 143, 162

deficiency discourse: applied to autism, 72; applied to women with disabilities, 40 De Groot, Joanna, 21 DeJong, Gerben, 56 democratic racism, 70 depression, 50–1, 114, 142, 144 diasporic communities: Chinese, 93; Muslim (see Muslim diaspora) disability, disabilities: biomedical model/discourse of (disability as individual pathology), 16, 17, 78, 87, 151, 155; demedicalized or alternative model of, 79–80; human condition of, 62, 151; and human genetics debate, 42–3; integrated model of, 24; link with gender and race, 6, 21; medical model of, 152; persons with disabilities as different, 40–1, 56–7, 77; physical vs mental, 35, 69; policies on, 16–19, 41; social or human rights model of, 16–18, 152–3, 155–6; studies and literature on, 4–5, 16–19, 21–4, 27, 152–4, 155–6; as tragedy, 75– 80 Disability and Culture (ed. Whyte and Ingstad), 70 disability benefits, 136–9 disability business, 46 disability identity, 33, 36–7, 40, 88–9; refusal of, 101, 116, 157 Disability in Canada, 18 Disability-Related Support Arrangements (Status of Women Canada), 41 disability rights movement, 56 disability theorists, 42 DisAbled Women’s Network Canada, 20, 154

Index domestic abuse and violence, 108, 114–16, 132–3, 155 Dossa, Parin: Politics and Poetics of Migration, 93 Drake, Robert, 41 Dua, Enakshi, 154, 155, 156 Du Bois, W.E.B., 88–9 education: ESL classes, 11, 112, 115, 121, 122; training courses for employment, 122, 143; university level, 36, 55 employment issues: deskilling, 121, 122, 147, 155; and immigration policy, 3, 6, 32, 34, 35, 45; for men with disabilities, 114; professional qualifications, 32, 55; for racialized women with disabilities, 32, 55–8, 97–8, 108, 117, 148; for refugees and immigrants, 14, 34, 35, 66, 108, 121; training courses for, 122, 143; vs volunteer work, 60–1; for women of colour, 46, 57–8; women’s double workload, 4, 34, 71 Equal Citizenship for Canadians with Disabilities, 18 Estroff, Carol, 37 ethical pedagogy, 145 Ethno-Racial People with Disabilities Coalition of Ontario (ERDCO), 20, 154 everyday life: eventedness of, 143–5; significance of, 97, 161–2 families: roles of women with disabilities in, 57–8, 97–101; support for children with disabilities, 66, 78, 79–80, 97 family care (for persons with disabilities), 34–6, 49–50; supplemented

187

with paid attendants, 38, 81; as temporary, 48; vs hospitalization, 12, 34–6. See also housing Farr, Grant, 96 Farsi, 11 feminist research: antiracist, 19–20, 21–2, 27, 154–7; dialogue with anthropology, 156 Fernando, Tisa, 38 Fine, Adrienne, 104; Women and Disabilities, 19–20 First Nations, 67, 129, 147 Foster, Lorne, 4, 44 Foucault, Michel, 139 Frank, Arthur, 94, 136; The Wounded Storyteller, 111 Frank, Gelya, 25–6, 92 French, Sally, 16 Gadacz, René, 45, 56 gender, 6, 18, 32, 33–4; and disability research, 19–20, 21–4, 155–7; female identity, 38 genetic disorders, 42–3 genetic screening, 76–7 Good, Byron, 79 grassroots coalitions, 20 Great Britain: disability policies, 41; Muslim diaspora in, 73–4; refugees with British passports, 44 group homes. See housing Gujerati, 11 Hankivsky, Olena: Social Policy and the Ethics of Care, 140 health care system: as abusive, 129– 30, 134; unequal access to, 125–6, 135–9 Henry, F., et al., 70; The Colour of Democracy, 113

188 Index Hirsch, Susan, 141 Hojabri, Afsaneh, 14–15, 148–9 hospitalization (of persons with disabilities), 7, 12, 54–5, 95–6; volunteer assistance for, 60; vs family care at home, 12, 34–6. See also housing housing (for persons with disabilities): attendants in, 46–54, 55; for children, 74; group homes, 46–54, 55, 74; institutionalization, 12, 16, 32; religious practices in, 74; social relations of residents in, 48–9, 51–2; special housing, 51–4; stigmatized image of, 48. See also family care; hospitalization human or citizenship rights: disability rights movement, 56; individual rights discourse, 69–70; liberal democratic discourse, 66, 152–3; of persons with disabilities, 16–17, 20, 59, 152–3; of refugees, 146. See also citizenship hydrocephalus, 64, 76–7 immigration policy (of Canada): colonial or capitalist orientation of, 123; embassy resources, 104; employment issues, 3, 32, 34, 35, 45; for persons with disabilities, 4, 6, 44, 67–8, 101–5, 143; as racist and sexist, 3–4, 20, 32, 155; refugee issues, 25, 34, 101 independent living movement/ model (ILM), 45–7, 56–7 India, 100 individual pathology, disability as: with biomedical model, 16, 17, 71– 2, 78, 155; with rehabilitation model, 56, 59

individual rights, 69–70 Ingstad, Benedicte, 40, 45, 70; Disability and Culture, 109–10 integrated model (of disability), 24; community integration movement, 45, 65–6; physical vs social integration, 54 In Unison: The Will to Act, 18 invisibility (of women with disabilities), 18, 127, 141 Iran, 94–101; domestic abuse issues in, 132–3; rural populations in, 94– 5; Western intervention and development, 95–6 Iranian community in Canada, 5, 10, 13–14, 142, 160 Islam, 158–62; accommodation of persons with disabilities, 38, 88–9; discrimination against, 14–16; Muslim identity in the community, 72–5; negative perceptions of, 158; regeneration in the West, 14–16; spirituality vs religious practice, 148–9; women’s interpretations of, 118–19, 148–9, 158–62; women’s mosque movement, 158–9. See also Muslim diaspora; Muslim identity; religion and spirituality Jackson, Michael, 33, 92, 126, 131, 135 Jiwani, Yasmin, 108; Discourse of Denial, 21 Jongbloed, Lyn, 153 Kaufert, Patricia, 139, 153 Kenya, 11, 14 Kirkham, Sheryl, 129 Kittay, Eva, 22, 66, 152, 157 Kleinman, Arthur, 97, 162 Kumar, Nita, 33

Index Lamb, Sarah, 100 Lazarus-Black, Mindie, 141 Lee, Jo-Anne, 156 liberal democracy: inequalities in, 66, 71, 140–2, 152–3; rights of persons with disabilities in, 66, 152–3; views of Islam, 158–9 life course perspective, 28–30 living arrangements (for persons with disabilities). See family care; housing Lock, Margaret, 78, 139, 153 Lutz, John, 156 Mackasey, Bryce, 44 Mahmood, Saba, 158–9 marginalized groups or people: actors vs acted upon, 33; agency or strategies of, 4–5, 19, 125, 190; in liberal democracies, 66, 71; and mainstream scholarship, 33; Muslims, 154, 158, 159; reasons for, 31– 2; separate world of, 29–30; and socialized systems, 18–19; social marginalization, 35, 84, 96, 152; vulnerability of, 127; women, 20, 38, 66, 93, 129 marriage (of persons with disabilities), 98–101, 105–10, 114–19 medical anthropology, 78–9, 136, 139 medical care. See health care system medical examinations: for persons with disabilities, 51, 136–8; for refugees, 44, 101–2 methodology, 10–13 Mitchell, David, 5 Modood, Tariq, 74, 89 Moghissi, Haideh, 14; Muslim Diaspora, 158 Mohanty, Chandra, 145, 162

189

Moore, Henrietta, 156; Feminism and Anthropology, 21 moral authority, 131–5 multi-voicing, 126–49 Muslim diaspora, 8, 13–16, 73–5, 119, 148, 158; as political vs cultural, 14, 158; in Western Canada, 5, 10, 14. See also Islam Muslim identity, 8, 72–5, 118–19, 158– 62; of disabled children, 72–3, 88–9; of research participants, 14–15. See also Islam Najmabadi, Afsaneh: The Story of the Daughters of Quchan, 25 nannies, 81, 82 narrative data. See stories and storytelling Nelson, Jennifer, 130 neoliberal restructuring, 22–4 normalization, contradictions of, 40–1 Ong, Aihwa, 26, 27, 64, 93, 97, 116 Other, the: non-European immigrants as, 11, 147, 155; persons with disabilities as, 16, 31–2, 34, 39 performance as protest, 140–3 Personal Narratives Group, 131 personal relationships. See social relations and friendships polio, 31, 50–1 politics of distribution, 17 politics of recognition, 17 Poole, Deborah, 5 Priestley, Mark, 46, 88 public transportation, 112–14, 140–3 racism: antiracist feminism, 19–20,

190 Index 21–2, 27, 154–7; common-sense, 155; democratic, 70; disability and gender issues with, 6, 21, 32; and disability research, 21–4; and employment issues, 57–8; against First Nations, 67, 129, 149; in immigration policy, 32, 155; against refugees and immigrants, 43–4, 67; and social differences, 22; systemic or institutional, 155–6; in Uganda, 38–9 Rahnema, Saeed, 158 ranking of persons with disabilities, 31–2, 69 Razack, Sherene, 4, 25; Looking White People in the Eye, 21; Race, Space and Law, 129 reductionism, scientific tradition of, 78 refugees: citizenship for, 121; deficiency discourse for, 40; employment for, 34, 45; immigration policies for, 25, 34, 44–5, 101–5, 147–8; medical examinations for, 44, 101–2; numbers of, 43–4, 123; paperwork for, 102–4; racism against, 43–4; refugee status, 33–4, 121, 122, 132; rights of, 146; social services for, 122, 123–4, 125–6; Ugandan Asian, 14, 31, 33–7, 43–5; U.N. Convention and Protocol Relating to, 33–4, 104, 123, 134, 147; Western colonialist views of, 133–4 rehabilitation model of disability, 56, 59 Reinders, Hans, 80 religion and spirituality, 157–62; as a community, 88–9; exclusion from, 60; humanizing aspect of, 61, 148– 9; as personal comfort and sup-

port, 98, 118–19, 124. See also Islam research on disabilities, 4–5, 16–19, 21–4, 27, 152–4, 155–6 research subjects or participants: background of, 7, 10–11; comments and feedback from, 11; contextspecific knowledge of, 4, 93; Muslim identity of, 14–15; power and agency of, 26, 28, 93; as social activists, 6–7. See also stories and storytelling rights. See human or citizenship rights Roeher Institute, 20; Disability-Related Support Arrangements, 42 Saktanber, Ayÿe, 159 Scheper-Hughes, Nancy, 92 Selvadurai, Shyam, 93 Sinclair, Jim, 110 Smith, Dorothy, 18, 27 Snyder, Sharon, 5 socially constructed spaces, 68 social or human rights model of disability, 16–18, 152–3, 155–6 social relations and friendships: exclusion from, 80; in housing for persons with disabilities, 48–9, 51– 2; importance of, 157; limited opportunities for, 61; physical vs social integration, 54 social services: accessibility to, 86; biomedical model for, 110; budget cuts and downgrading of, 54, 59, 124, 153; for children with disabilities, 7, 12, 22; compartmentalization of, 59, 82, 83; costs and economic viability of, 46, 48–9; dependency on persons with disabilities, 69, 145; dependent status of clients,

Index 45, 69; disability benefits, 136–9; and disability identity, 36–7; ethics of care in, 140; family counselling, 115–16; government policies on, 59; and neoliberal restructuring, 22–4; physical needs focus of, 78, 80; for racialized minorities, 45; for refugees, 122, 123–4, 125–6; topdown approach, 13, 18; unequal access to health care, 125–6, 129– 30, 135–9; welfare allowances, 117– 18, 135–9, 144–5; and the welfare state, 84–9; women’s low-level jobs in, 46–7, 69, 85 South African Truth and Reconciliation Commission, 127 South Asian Muslims from East Africa, 5, 10, 14–15; Ugandan Asian refugees, 14, 31, 33–7, 43–5 space, narration of, 146–9 spaces of resistance, 153–4 spacialized exclusion, 67–8 special claims citizen, 23 Spivak, Gayatri, 155 Status of Women Canada, 20; Disability-Related Support Arrangements, 42 stories and storytelling, 5–7, 24–8; appropriation of, 25, 28; chronology of events in, 64; collective voice in individual stories, 8, 11– 12, 29–30, 122, 161–2; emanating from wounds, 135–9; global circulation of, 93; and life course perspective, 28–30; listening/reading audience for, 26–8, 92, 116, 126, 130–1, 149, 162; as a means of reconstituting personhood, 5, 6–7, 126; multi-voicing, 126–49; narrat-

191

ing space, 146–9; political aspect of, 6, 67; research methodology with, 11–12, 25–8; sociopolitical contexts of, 25–8, 65, 122, 151; testimonial dimension of, 151. See also research subjects or participants Sullivan, Zohreh, 96 Tanzania, 11, 14, 66, 83, 90 Thobani, Sunera, 133, 154; Exalted Subjects, 22 Uganda, 11, 12, 14, 37–40 Ugandan Asian refugees, 14, 31, 33– 7, 43–5 umma (global Islamic community), 15, 73 United Nations: Commission on Human Rights, 17; Convention and Protocol Relating to the Status of Refugees, 33–4, 104, 123, 134, 147; Convention on the Rights of Persons with Disabilities, 17; Decade for Disabled Persons, 70; Declaration of the International Year for Disabled Persons, 17; Declaration on the Rights of Disabled Persons, 17; Declaration on the Rights of Mentally Retarded Persons, 17; Standard Rules on the Equalization of Opportunities for Persons with Disabilities, 17, 18; Universal Declaration of Human Rights, 3; World Program of Action, 17 vulnerability: of children with disabilities, 75–80; of immigrant women with disabilities, 108, 109; of marginalized people, 127

192 Index welfare state, 84–9 Wendell, Susan, 112 wheelchairs, 38, 111–12; use of vs confinement to, 57; wheelchair marriage, 98–100, 107, 114–16 Whyte, Susan, 40, 45, 70; Disability and Culture, 109–10 Wolf, Diana, 4

Yee, May, 64 Zaman, Habiba, 154; Breaking the Iron Wall, 22 Zitzelsberger, Hilde, 127 Zola, Irving, 56–7