When Terrin Ritcey, a young Nova Scotia woman with developmental disabilities, turned 19, her mother placed her on a housing wait list. Rather than wait for an unresponsive governmental system that had placed a moratorium on “small options homes” in the 1990s, Terrin’s mom and three other families pooled their resources and began searching for a home for their family members. They sought to develop their own care program for their children. After much resistance from governmental officials in Halifax, Terrin’s mom successfully placed her in a home where she lives with two roommates, David and Michelle. Another family was not so successful. The mother, Nancy Walker, is upset, “furious at a system” that forced her to make the wrenching decision to send her then 19-year-old son James from his family home to live in the Quest Regional Rehabilitation Centre outside Halifax, where, she says, he was “deprived of a home-like environment, of the basic freedoms in life and of the opportunity to grow.” 1 The Walker family is not alone in its feelings of loss and sadness. In the United States, Child Protective Services and “the cops” showed up two hours after Sara’s daughter Naomi was born. They coerced Sara, who has developmental disabilities, into signing a “relinquishment agreement” that forfeited her parental rights and provided her with a chance of seeing her daughter for two hours each year. “Someone” had “reported” Sara while she was pregnant. Child welfare officials issued Sara a “Reality Baby,” which is a computerized doll with an internal monitor, to see if she could care for an infant. Sara had failed the test. “She [Naomi] is excited when she is with me,” Sara said. “And it breaks my heart every day when I think about her. …She is my life and I miss her so much and I just would like her home and today was the last visit. And it broke my heart.” 2

Stories similar to these, those of families living with disabilities, are quite common. People living in the United States and Canada see almost daily, in newspapers and on television and social media, stories of nursing home scandals, disabled people losing their home health benefits and their right to parent, dwindling government supports to maintain “community living” for people with disabilities, elder abuse, the exploitation of disabled workers in “sheltered workshops,” and more. Yet we have no sustained scholarly critique of these multiple domestic sites of disability oppression and resistance. Scholars in various fields within the humanities and social sciences have drawn attention to disability as an innovative category of analysis. They have used disability and the experiences of disabled people to critique sex and gender relations, modern notions of productivity, current and historical educational standards and pedagogies, and commonly held notions of illness, health, debility, and deformity. Yet disability studies’ potential to fundamentally rethink Western Global North notions of domesticity and domestic labor has not yet been realized. Disabling Domesticity begins this crucial project by offering 13 chapters that focus on the daily negotiations and lived experiences of people with disabilities and their various kinship and care networks.

While the need for a more global study is evident, this book begins what should become a sustained analysis of domesticity and domestic life by focusing specifically on the United States and Canada. 3 Based on early twenty-first-century legal definitions and the 2010 Census, there are approximately 56.7 million people living with disabilities in the United States, about 19 % of the population. In Canada in 2012, 3.8 million adults, about 13.7 % of the adult population, reported being limited in their daily activities because of a disability. According to a report published in 2011, approximately one in seven or 14.3 % of all Canadians (4.4 million people) are living with various degrees of disability. 4 Analyses based on the US Census Bureau’s 2013 American Community Survey estimate that among the “civilian noninstitutionalized population,” there are about 2.9 million children under the age of 18, 19.4 million adults aged 18–64, and 14.8 million adults aged 65 and over living with various degrees of disability; presumably these 37.1 million “noninstitutionalized” Americans are living in a broad range of community and family settings. 5 The remaining 19.6 million “institutionalized” disabled Americans, overwhelmingly people of color and the elderly, also have families and homes. Population surveys in Canada and the United States have shown that 60–80 % of people with disabilities generally have their needs for assistance with everyday activities met through various means of support. Most support networks are informal and consist primarily of family and friends. Disabled people themselves also perform significant amounts of care work, as parents, family members, and friends—this is true historically, and it remains the case in the twenty-first century. 6 Analyses from the American Community Survey estimate that there are 6.6 million children under the age 18 being raised by a disabled parent—nearly 10 % of all children in the United States. 7 One survey of non-elderly adults living with disabilities in the United States found that 70 % relied on family and friends for assistance with daily activities, while only 8 % used home-health aides and personal assistants. 8 The US Department of Health and Human Services Administration for Community Living estimates that there are 4 million Americans living with intellectual and developmental disabilities, that 60 % of those receiving services live with their families, and that their families are their “primary support system.” 9 People with disabilities and their families comprise a significant portion of the social and communal networks in the United States and Canada.

Even in the nineteenth and early twentieth centuries, when institutions dominated North America, people with disabilities lived at home or in the community. 10 Historians generally agree that from colonial times until about the 1850s, people with different disabilities lived with family or were forced by community members to remain at large. They managed as well as they could, moving from place to place, working and contributing to the family and the local economy. They received various forms of support when they needed them. 11 Specialized institutions promising “cure” through education and “moral treatment” began to emerge and expand during the 1830s and 1840s. 12 Increasing state control and the increasing institutionalization of people with disabilities marked the period from the 1850s to the 1950s. Tremendous increases in institutionalized populations had their roots in the medicalization and pathologization of human difference, rising immigration and other demographic shifts such as rural to urban migration, and the maturation of a burgeoning industrial economy, which made it more difficult for people with disabilities to remain “productive” members of their families and the community. 13 By the early decades of the twentieth century, most institutions had become large human warehouses, grossly underfunded and understaffed, dirty, wretched, and generally deplorable places. Reformers, government officials, parents and other family members, and disabled people themselves, spent the second half of the twentieth century working to close them and move disabled people into the community. 14 Throughout this history, it was not uncommon for a person to spend their entire life in an institution. 15 There were, however, many disabled people who entered the institution sporadically when they needed it or were forced into it—and who lived most of their lives in the community. Disabled people living with their families or on their own contributed to local and familial networks of support and care, to local economies, and to larger economic networks. They also relied on family, friends, community members, and the state for support. 16 These domestic relations form the core of the analysis in Disabling Domesticity.

Nine-year-old Jane, or Janie, as her mother liked to call her, is an example of someone who remained at home. Janie became the subject of a feature article written by her mother, Violet Ebb Lundquist, and published in Bound—“Iowa’s Own Magazine”—in 1958. The article, “I’m Glad We Kept Janie at Home,” begins with the declaration that Janie’s “crudely-cut” Christmas gift for her parents—a calendar—strengthened “our conviction that we had chosen the right course for our family in spite of advice from specialists to the contrary.” Janie was “a mongoloid, a mentally retarded child.” Yet her parents, contrary to both popular and expert opinion, chose to rear her at home. 17 They were not alone. Although the rate of admission to public institutions for intellectually and developmentally disabled children under six years of age doubled, and children under six went from 9 to 19 % of all new admissions to institutions between 1945 and 1955, there were signs that institutionalization was no longer tolerable for many families. A 1950 survey found 88 local parents groups—most of which had been formed between 1946 and 1950—with 19,300 members in 19 states advocating community living. Also in 1950, local groups came together and formed the National Association for Retarded Children (NARC). By 1960, the NARC had 681 local affiliates and a membership of 62,000 people (at that time mostly parents) dedicated to finding alternative forms of care and education for their children. 18 Although she would not characterize herself that way, Janie’s mother was one of those activist parents who would help hasten deinstitutionalization and promote the public education of intellectually and developmentally disabled children. 19

A groundswell of activism beginning in the late 1960s and 1970s in the United States and Canada catalyzed deinstitutionalization. United Nations declarations and conventions, and a legislative sea change at home in turn led to increasing numbers of people with disabilities living on their own, with their families, or in other residential settings in the community. 20 By the last third of the twentieth century, people with disabilities began to coalesce around specific issues primarily related to education, employment, housing, and transportation. Tactics differed and movement participants never completely agreed on philosophies, but generally, activists within the parents movement, the mad peoples movement, and the disability rights/independent living movement utilized a “rights-based” approach and a then-nascent “social model of disability” to make claims on the state for increased access and equality within society. 21 The results were startling. Precise numbers are difficult to locate, but most scholars agree that the institutionalized population in the United States declined from a peak of over 550,000 in the mid-1950s to fewer than 40,000 by 2014. In Canada, various institutions housing people with developmental disabilities and what were considered “mental-health problems” began to deinstitutionalize in the mid-1960s. Canada’s institutionalized population declined rather swiftly, from a peak of about 70,000 in the mid-1960s to approximately 20,000 by the early 1980s, when the national government began officially to promote deinstitutionalization. 22 Thereafter, the institutionalized population declined even further to only 3873 by 2006. 23 All large institutions in Ontario and Newfoundland were closed by 2009. In 2015, the Canadian Association for Community Living reported that since 1986, 90 % of Canada’s large institutions had been closed.

Deinstitutionalization did not occur without problems. In fact, scholars in a number of disciplines argue that deinstitutionalization has been plagued with problems from the very beginning. A lack of adequate resources in the community and a general devaluing of disabled body/minds and lives meant that many deinstitutionalized people, especially people of color living in the United States, became homeless and ultimately found themselves incarcerated in the nation’s jails and prisons. 24 Moreover, many of the residential settings into which disabled people moved, such as group homes, nursing homes, and other assisted living facilities remained problematically institutional in their outlook and management, as well as their built environment. Finally, many disabled folks who depended on attendant care or other home health-related services were forced to invite the state and waged workers into their homes, creating an environment that was at once public and private, often in complex and occasionally damaging ways. Disabling Domesticity analyzes these dynamic sites of human interaction to provide readers with new ways of envisioning home, care, and family.

This book disables domesticity in at least two ways. First, it works actively to create a politicized theoretical space from which a disabling critique of dominant heteronormative ableist constructions and material manifestations of domestic life can be articulated. 25 Feminist, crip/queer, and critical race theory as well as a materialist disability studies analysis inform the work collected in these pages. Eschewing totalizing dismodernist notions of disability, the authors gathered here instead utilize a complexly embodied understanding of disability firmly grounded in its material realities and the dominant socioeconomic structures that pervade disabled people’s lives. 26 Unlike David Mitchell’s “nonnormative positivisms,” which he (with Sharon Snyder) describes as a “non-dialectical materialist account of disability,” that sees it as a “fleshy,” “messy,” “critical third rail,” and as “something other than the oppressed product of social constraints,” the theoretical framework created by the chapters collected in this volume recognizes that the subversive potential of disability and disabled experiences must always be measured dialectically in relation to their own shifting materiality and to the social structures and societal forces that shape them. 27 While the desire to move beyond what Mitchell calls the “two zones of negativity” that have dominated thinking in disability studies since its “founding moments in the 1970s”—namely that disability subjectivities are merely “characterized by socially imposed restrictions” (the social model of disability) or that disability imposes real embodied limitations (impairment effects)—is critical, we need not abandon a dialectical approach in favor of a new disability positivism to extricate ourselves from this philosophical quandary. 28 That the world’s majority disabled population suffers daily abuses and oversights, lives in abject poverty, and lacks even the most basic necessities for human survival speaks to the need for a complexly embodied historical materialist analysis of disability.

Having established a hybridized intersectional theoretical base, this book disables domesticity by placing the lived experiences of people with disabilities and other representational accounts of disabled lives at the center of the analysis. Following Rayna Rapp and Faye Ginsburg’s call to rewrite kinship and reimagine citizenship, Disabling Domesticity critically engages with popular notions and experiences of the built environment, home life, family, sex, sexuality, and care in the United States and Canada to begin to unravel and peel back the many (in most cases sedimented) layers of both ideological and physical matter that work together to produce the lived reality of the people that appear in (and haunt) these pages. 29 Rapp and Ginsburg argue that such a rewriting will enable “a more expansive sense of kinship across embodied difference that, [they] argue, is essential to the growing public presence of disability in contemporary postindustrial democracies.” 30 For Rapp and Ginsberg, and the authors gathered in this book, kinship can extend well beyond the immediate nuclear family and the highly permeable walls and doors of our homes. The introduction of disability into a family, through birth, accident, or aging, represents an “occasion for meaning-making” that can last a lifetime and is often mediated through various technologies and public discourses, resulting in some cases in a “mediated kinship” among disabled people and disabled families who share no blood relations but find value and shared connection in similar lived experiences. 31 The “public storytelling” of these “disability narratives” is crucial to building a “social fund of knowledge about disability” that Rapp and Ginsburg argue is “foundational to the integration of disability into everyday life.” 32 Disabling Domesticity builds on this foundational insight by pushing readers to think beyond integration, to recognize that weaving crip/queer, nonnormative disabled body/minds and lived experiences into the social fabric alters its texture permanently. These incremental changes accumulate and calcify and become codified in law and public policy, and over the course of years or decades produce significant and meaningful, though not always unproblematic, changes in our daily lives. The personal and the private are indeed political. 33

Domesticity and domestic relations are central to all our lives. Yet disability studies scholars have been reluctant to engage with “domesticity” either as an organizing concept or as lived experience. For 40 years or more, activists and academics—which by no means are mutually exclusive identities—have focused on moving themselves, as well as other disabled people, out of their homes (or other institutionalized settings) into the wider world of work, school, and various forms of public accommodation and recreation. They also have sought to bear witness to the many violences committed against people with disabilities and reclaim, politicize, and empower disabled body/minds. Within the narrative constructions produced by both activists and academics, family and home became sites of ableist oppression that had to be avoided or actively dismantled. For many disabled people, the home and other domestic spaces remain dreaded sites of oppression. Yet recent work in disability studies and disability history is showing that disabled people’s domestic lives are richly complex and varied, and that disabled people use the home or other “homelike” settings to carve out critically important spaces within which they not only empower themselves, but also form meaningful, life sustaining, and often transformative relationships. 34

Contributors to Disabling Domesticity focus on the varied domestic sites where intimate—and interdependent—human relations are formed and maintained. These sites are at once private and public, and racially, economically, sexually, and politically inflected. They in turn make up the social, cultural, ideological, and physical locations where family, friends, workers, and lovers come together and form the bonds that sustain and in some cases destroy their varied existence. Analyzing domesticity through the lens of disability forces readers to think in new ways about family and household forms, care work, an ethic of care, reproductive labor, gendered and generational conflicts and cooperation, aging, dependence, and local and global economies and political systems, in part by bringing the notion of interdependence, which undergirds all of the chapters in this book, into the foreground. Although politically powerful and entirely essential to the disability rights movement in North America and places like the UK and Australia, the notion of “independent living” is not only a misnomer, it is deeply damaging to disabled people who might have to deny or dissemble certain aspects of their lives in an effort to seem more “independent”—or more “normal”—and to those disabled people who see state-funded mechanisms of support slashed in the name of austerity. The idea of independent living and the independent living movement can be equally oppressive to family, friends, allies, and support workers (usually women of color) whose labor remains undervalued, and in most cases goes completely unrecognized and unremunerated. Disabling Domesticity opens a space within which to discuss these important issues. It is time to start thinking of the independent living movement as the interdependent living movement. 35 This volume moves us closer to that goal. 36

The analytical space created by this book is a relatively safe space. Although the authors collected in this volume engage with dominant theories in disability studies and other related areas, they do as much as they can to avoid the obfuscating language of the North American academy. As powerful and productive as many of the critiques within disability studies have been, they remain largely illegible to the world’s majority disabled population. 37 When we venture outside North American disability studies, negotiating and articulating a “disability studies” critique becomes difficult. For the aging single mother of the 20-something-year-old group home resident, or the local self-advocates, or the blind man or the deaf woman living in India, or Brazilian disability rights activists, deciphering North American academic discourse becomes an incomprehensible, arduous, and in some cases futile task. As disability studies scholars, we should have a commitment to equity and social justice and a sense of fairness that informs our work and our lives more generally.

Given the absolute centrality of domestic relations in all our lives, it is surprising that such a book has not yet been published. 38 Existing literature within disability studies that takes a more domestic focus, concentrates on one of several key areas, namely reproduction, disabled mothering—usually of infants and toddlers—and the de/institutionalization of disabled children. 39 Within these critical areas of inquiry, authors most commonly work to expose past abuses, as well as various forms of resistance by people with disabilities and their families and other allies. Authors argue that disabled people, and especially disabled women, have historically been constructed as asexual, largely incompetent, and wholly dependent on their care providers, or as hypersexual and dangerously deviant, in need of control. Both renderings of disabled lives have been deployed to militate against disabled parenting, with healthcare and other professionals, as well as state officials and many family members, arguing that people with disabilities are unfit parents. Authors have also focused on the extent to which disability disrupts normative family structures, requiring the need for removal of disability from the family through abortion, institutionalization, adoption, or foster care. Recent authors document the ways in which people with disabilities (usually women) and disabled families (usually mothers) resist these oppressive ideologies and practices and maintain their families or parent against the current of normative expectations and in spite of structural limitations. Disabling Domesticity builds upon this richly eclectic writing by simultaneously strengthening and widening the analytical lens—by constructing an analytical home with a solid foundation that is adaptable enough to include a broader range of domestic spaces and lived experiences.

Disabling Domesticity is divided into three sections that model the interdisciplinary strengths of disability studies. The first section, “Home,” contains four chapters that explore the built environment and what might be called “home economies” from a historical perspective, focusing on the nineteenth and twentieth centuries. Among other things, the chapters in this section highlight the ways in which disability, class, and gender trouble common understandings of “home” and “homemaking.” Home is both a physical space and an ideological, discursive, and cultural construction. The book’s second chapter, “From ‘Blind Susan’ to Incidents in the Life of a Blind Girl: How Mary L. Day Disabled Domesticity,” written by professor of English Jennifer Thorn, situates an analysis of Mary Day’s life as it is recounted through her own memoir within the broader context of other contemporary fictional “blind girl stories” to create a stark counternarrative to the sentimentalized notions of family, girlhood, motherhood, and disability that seemed to dominate the nineteenth-century United States. In Chap. 3, “Crossing the Threshold: Disability and Modernist Housing,” Beth Tauke and Korydon Smith, both professors of architecture and design, use the innovative concept of “the threshold,” which they define as “three-dimensional and spatial,” and as “‘in-between,’ or liminal, spaces” to push us to consider how three historic homes and their designers can help us to reimagine the relationships among nonnormative bodies and domestic spaces. Chapter 4, historian Laura Micheletti Puaca’s, “The Largest Occupational Group of All the Disabled: Homemakers with Disabilities and Vocational Rehabilitation in Postwar America,” traces the history of post-World War II efforts to include primarily white middle-class women in the burgeoning US vocational rehabilitation industry as homemakers, which among other things gave rise to important arguments about the economic significance of women’s reproductive labor in the home and ultimately supported some disabled women’s efforts to pursue “independent living” and disability rights by the late 1960s and early 1970s. In the section’s final chapter, “Rethinking the American Dream Home: The Disability Rights Movement and the Cultural Politics of Accessible Housing in the United States,” American and disability studies scholar Andrew Marcum makes a powerful call for future researchers and activists to move away from an “uncritical embrace of access to the American dream home for people with disabilities” that leaves “intact the cultural norms, spatial practices, and multivalent structures of oppression that excluded people with disabilities from the ‘dream home’ in the first place.”

The four chapters in the second section, “Care,” which are more sociological in their methodology, demonstrate the importance of analyzing disability in conversations about care work, citizenship and the welfare state, aging and dementia, medical technologies and childcare, and finally sex and sexuality. In the section’s first chapter, “A Feminist Technoscientific Approach to Disability and Caregiving in the Family,” professor of women’s and gender and disability studies Laura Mauldin issues a call for feminist disability studies scholars to take seriously both domestic caregiving and the important insights of feminist work being done in the area of science and technology studies. As Mauldin points out, the availability of technological innovations in the home has transformed care work most often conducted by family members in significant ways that have been woefully underinvestigated by disability studies scholars. In Chap. 7, “Inevitable Intersections: Care, Work, and Citizenship,” Grace Chang, professor of feminist and ethnic studies, argues that the dilemmas posed by the current “crises of care” in the United States and other “wealthy” countries demand that disability rights and care worker rights scholars and organizers find common ground to confront the politicized and often heated conflicts among them. Chang argues that only by recognizing the shared vulnerabilities these groups face under similar oppressive ideologies and structures can we find “bases of alliance across these communities and movements” to transcend these divisions. In Chap. 8, “LGBTQ People with Attendant Care Dependent Mobility Impairments Reclaiming their Sexual Rights,” professor of health sciences and social worker, Les Gallo-Silver, professor of health sciences and social psychologist, David Bimbi, and historian and disabilities studies scholar Michael Rembis, provide us with an analysis of the intimate relations of care developed among people with disabilities, their families, and paid caregivers. They find that while we must never minimize or negate the multiple oppressions and many violences experienced by LGBTQ people with disabilities, we must also acknowledge, engage with, and celebrate the many ways in which LGBTQ people with attendant care-dependent mobility impairments are empowering themselves through interdependent relations of care. The section’s final chapter, “‘Everybody Has Different Levels of Why They Are Here’: Deconstructing Domestication in the Nursing Home Setting,” co-authored by Katie Aubrecht (sociology) and Janice Keefe (family studies) focuses on person-centered dementia care among the elderly in nursing homes in Canada. Aubrecht and Keefe argue that “[w]hile person-centered dementia care is promising in its aims, it has been critiqued on the grounds that its underlying concept of personhood has yet to be fully clarified and empirically developed.” Drawing from van Manen (1990), they conclude that we must create a “counternarrative of dementia that orients to dementia as an expression of ‘faith in reciprocity and a shared life.’” 40

The book’s third section, “Family,” which consists of five chapters, poses important theoretical considerations that challenge the very notion of “home life.” How might a new ethic of madness (or sanity) force us to redefine family and home? Similarly, how do “neuroqueer domesticities” “melt down” (or deconstruct or challenge) the family unit, especially for those families living on the autism spectrum? How do definitions of family and home change when disabled people are parents and providers of care, rather than children and recipients of care? Questions such as these are considered in the third and final section of the book. In Chap. 10, “Contesting the Neoliberal Affects of Disabled Parenting: Towards a Relational Emergence of Disability,” disability studies scholar Kelly Fritsch skillfully weaves her own lived experience with an insightful literature review and deft reading of two case studies drawn from popular culture to provide an intimate yet far-reaching assessment of the relationality of disability. In her chapter, Fritsch addresses the ways in which dominant cultural discourses of disabled parenting, with a particular focus on disabled mothering, re-enforce disability as located in an individual body. Fritsch shows how disabled people are hailed to feel good about being capacitated into ideal normative mothers through neoliberal forms of care and marks how relational approaches to disability can contest neoliberal forms of parenting. With his chapter, “The Mad Woman in the Garden: Decolonizing Domesticity in Shani Mootoo’s Cereus Blooms at Night,” professor of women’s and gender and disability studies Jeffry J. Iovannone provides us with a reading of Mootoo’s novel that explores the ways in which colonialism both produces and erases queer and disabled subjects within domestic spaces. The novel ultimately reimagines domestic reality so as to reimagine the lives of marginalized subjects in both private and public. The normalizing forces of colonialism are therefore resisted through the creation of alternative or queer domestic spaces, kinship arrangements, and modes of self-expression. In Chap. 12, “Gatekeepers of Normalcy: The Disablement of Families in the Master Narratives of Psychology,” Priya Lalvani, a developmental psychologist and professor of inclusive education, problematizes dominant assumptions about negative outcomes or “denial” among families of children with disabilities. Situating these dominant assumptions in the context of a historical pathologizing of this group of families by mental health professionals, Lalvani explicates the ways in which parents’ subjective interpretations of disability and normality are often obscured by the ableist interpretations of those in positions of power and control. In “Postfeminist Motherhood? Reading a Differential Deployment of Identity in American Women’s HIV Narrative,” the book’s penultimate chapter, disability studies professor Allyson Day argues that reading women’s HIV narratives for their differential deployment of identity creates a new affective landscape, which in turn complicates, in productive ways, commonly held notions of the relationship between motherhood and women’s health advocacy. Finally, disability studies scholar Zachary A. Richter concludes Disabling Domesticity with “Melting Down the Family Unit: A Neuroqueer Critique of Table-Readiness,” an innovative look at the table as a central site for heteronormative and ableist discipline over generally neurodivergent and more specifically Autistic bodies. In reversing the argument that claims autistic symptoms cause divorce, Richter argues that the demand of normalization as it echoes through a heteropatriarchal household infrastructure inflicts extra labors of discipline upon multiple members of the family unit and often breaks relations when rehabilitation becomes a greater priority than intimacy.

This book focuses on the United States and Canada, but it is clear that disability studies needs a sustained critique of domestic spaces and the lived experiences they engender in other parts of the world. As Nilika Mehrotra and Karen Nakamura have shown, family and extended kinship networks form a fundamental part of ideologies of disability and the lived experiences of disabled people in South and East Asia. 41 Family, home, and domestic life are equally important in the lives of people with disabilities in Central and South America, Africa, and throughout Europe. 42 Scholarship generated in these areas must be rooted in local histories and cultures, but must also be mindful, and critical of global contexts and constructs, including “global disability studies.” Visiting Research Fellow at Manchester Metropolitan University, Shaun Grech, and others, including Mehrotra have argued that “disability studies” remains a global North, white, disability studies and they offered ways in which disability studies scholars might engage in a critical global disability studies. 43 It is my contention that focusing on family, home, and domestic life offers one way to move beyond the exportation of global North research models and ideologies to the global South and place various regions throughout the world in conversation with one another. Nothing seems more universal than the negotiation of our daily lives, including our struggles for survival, and our efforts to build and maintain community and kinship. 44 Mehrotra argues for example, that disabled women living in the state of Haryana and the city of Delhi, India engage in a type of “domestic citizenship.” 45 What precisely does this mean in the Indian context? How might insights from India inform work being done in Guatemala, Poland, the United States, Scotland, or South Africa? How can this research and these lived experiences help us build a stronger sense of global community and stronger movements for equality and social justice? Disabling Domesticity is meant to mark the beginning of such scholarly and activist discussions.

In a brief essay on “Family,” published in Keywords for Disability Studies (2015), Faye Ginsburg and Rayna Rapp argue that, “families are both flesh-and-blood collaborations and always acts of cultural imagination.” 46 Likewise, the caring performed within diverse kinship networks and homes of various sorts is also made up of flesh-and-blood collaborations and cultural imaginaries. The home too, however it might be defined, is always rooted in the material, cultural, and social. When we disable dominant notions of domesticity, the human relations, material conditions, and structural forces that shape and are shaped by all three of these overlapping ways of knowing and being fall into stark relief. They open themselves up for analysis and provide an opportunity to create powerful counter-narratives that can help build the “social fund of knowledge about disability” advocated by Rapp and Ginsburg. 47 Disabling Domesticity makes it possible to revise and remold not only the way we imagine home, community, and kinship, but also the way we enact them in our daily lives, which ultimately is the greatest force for social change.

Notes

  1. 1.

    Investigative Workshop, University of King’s College, “Warehoused: Nova Scotians with Intellectual Disabilities Face a Housing Crisis,” The Huffington Post Canada Posted: 06/11/2013 5:36 am EDT/Updated: 06/11/2013 10:51 pm EDT http://www.huffingtonpost.ca/2013/06/11/intellectual-disabilities-housing_n_3342995.html (Accessed: 07/02/2015).

  2. 2.

    Ella Callow, “Disabled Mothers: Misadventures & Motherhood in the American Courts,” in Dena Taylor and Gloria Filax, eds. Disabled Mothers: Stories and Scholarship by and About Mothers with Disabilities (Bradford, ON: Demeter Press, 2014): 281–282.

  3. 3.

    The contributors to this volume, including its editor, are well aware of North American and UK (primarily British) dominance of disability studies scholarship and discourse, as well as the importance of the global disability rights movement and critical global disability studies. Domesticity, as it is being defined in this volume is indeed a Western concept. Yet, families and homes of various sorts are central in disabled people’s lives throughout the world. It is the editor’s hope that this volume marks a starting point and provides a foundation for future dialogue among scholars, activists, and artists in various parts of the world concerning the importance of domestic life in disabled people’s lives. For more on disability studies outside North America and the UK, see: Michael Rembis, “Disability Studies,” The Year’s Work in Critical and Cultural Theory (Oxford University Press: April 2015 online: doi:10.1093/ywcct/mbv007Z: Print Fall 2015).

  4. 4.

    Human Resources and Skills Development Canada, Disability in Canada: A 2006 Profile (2011).

  5. 5.

    U.S. Census Bureau: American FactFinder, http://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml?pid=ACS_13_5YR_DP02&prodType=table (Accessed 06/27/2015).

  6. 6.

    See, for example: Daniel Blackie, “Disability, Dependency, and the Family in the Early United States,” in Susan Burch and Michael Rembis, eds. Disability Histories (Urbana: University of Illinois Press, 2014): 17–34; Penny L. Richards, “Thomas Cameron’s ‘Pure and Guileless Life,’ 1806–1870: Affection and Developmental Disability in a North Carolina Family,” in Burch and Rembis, eds. Disability Histories, 35–57.

  7. 7.

    Paul Preston and Jean Jacob, “Disabled Mothers: Perspectives of Their Young Adult Children,” in Taylor and Filax, eds. Disabled Mothers, 317.

  8. 8.

    World Health Organization, World Report on Disability (WHO, 2011): 139,140.

  9. 9.

    Administration for Community Living, http://www.acl.gov/Data_Outcomes/Index.aspx (Accessed 06/27/2015). See also: Perkins, E. A., & Haley, W. E. “Emotional and Tangible Reciprocity in Middle and Older-Aged Caregivers of Adults with Intellectual Disabilities,” Journal of Policy and Practice in Intellectual Disabilities, 10 (2013): 334–344; Williamson, H. J. & Perkins, E. A. “Family Caregivers of Adults with Intellectual and Developmental Disabilities: Caregiver Outcomes Associated with U.S. Services and Supports,” Intellectual and Developmental Disabilities, 52 (2014): 147–159.

  10. 10.

    Although the history of institutionalization varied among the different provinces in Canada, generally it had an experience similar to that of United States. Steven Noll has written about Canada, “The first institution specifically designed to house insane persons opened in 1836 in New Brunswick. Upper Canada (today Ontario) developed a facility in the 1830s that became the Toronto Asylum by 1850. According to historian Ian Dowbiggin, ‘paralleling developments south of the border, Ontario had by the final third of the nineteenth century established an expansive mental health care system … at the center of [which] was the asylum and the physicians who staffed it.’ In Nova Scotia, an institution opened after the impassioned visit of Dorothea Dix in 1850, although it took nine long years for the facility finally to admit its first patient. Specialized institutions for the feeble-minded opened in Canada in the last quarter of the nineteenth century. Ontario’s Orillia Asylum opened in 1876 with the same promise and problems exhibited by similar institutions throughout North America. As early as the mid-1880s, the superintendent complained that, ‘funding was the lowest in North America.’” Steven Noll, “Institutions in North America,” in Michael Rembis, Catherine Kudlick, and Kim E. Nielsen, eds. The Oxford Handbook of Disability History (Oxford University Press, forthcoming): n.p.

  11. 11.

    See, for example: Janice Brockley, “Rearing the Child Who Never Grew: Ideologies of Parenting and Intellectual Disability in American History,” in Steven Noll and James W. Trent, eds. Mental Retardation in America: A Historical Reader (New York: New York University Press, 2004): 130–164; Gerald N. Grob, The Mad Among Us: A History of the Care of America’s Mentally Ill (New York: Free Press, 1994); Gerald N. Grob, Mental Institutions in America; Social Policy to 1875 (New York: Free Press, 1972); Kim E. Nielsen, A Disability History of the United States (Boston: Beacon Press, 2012); Penny L. Richards, “Thomas Cameron’s ‘Pure and Guileless Life,’ 1806–1870”; Penny Richards, “‘Beside Her Sat Her Idiot Child’: Families and Developmental Disability in Mid-Nineteenth-Century America,” in Noll and Trent, eds. Mental Retardation in America, 65–84.

  12. 12.

    See, for example: R. A. R. Edwards, Words Made Flesh Nineteenth-Century Deaf Education and the Growth of Deaf Culture (New York University Press, 2012); Lawrence B. Goodheart, Mad Yankees: The Hartford Retreat for the Insane and Nineteenth-Century Psychiatry. (Amherst: University of Massachusetts Press, 2003); Gerald N. Grob, Mental Institutions in America; Constance M. McGovern, Masters of Madness: Social Origins of the American Psychiatric Profession. (Hanover, NH: Published for University of Vermont by University Press of New England, 1985); Nielsen, A Disability History of the United States.

  13. 13.

    Gerald N. Grob, Mental Illness and American Society, 1875–1940. (Princeton, NJ: Princeton University Press, 1983); Robert Whitaker, Mad in America: Bad Science, Bad Medicine, and the Enduring Mistreatment of the Mentally Ill. (Cambridge, MA: Perseus Pub, 2002).

  14. 14.

    Steven J. Taylor, Acts of Conscience World War II, Mental Institutions, and Religious Objectors. (Syracuse University Press, 2009).

  15. 15.

    Providing a “stable domestic life” and domestic “training” remained the stated goal of most institutions for almost one hundred years, sometimes with perverse ends. See, for example: Susan Burch and Hannah Joyner, Unspeakable: The Story of Junius Wilson (Chapel Hill: University of North Carolina Press, 2007).

  16. 16.

    Carla Yanni has found, for example, that “[i]n 1855 a report on the insane in Massachusetts stated that there were 1348 lunatics in institutions and 1284 at home,” and that “[t]he census of 1880 calculated that of 91,959 insane persons in United States, 50,879 where incarcerated and the rest (about 45 percent) where ‘at home or in private care.’” Carla Yanni, The Architecture of Madness: Insane Asylums in the United States. (Minneapolis: University of Minnesota Press, 2007): 6. Similarly, social historians of medicine who have studied both Canada and the United States have shown that many mad people who entered institutions—almost half in some cases—remained there for relatively short periods of time. David Wright, James Moran and Sean Gouglas, “The confinement of the insane in Victorian Canada: the Hamilton and Toronto asylums, c. 1861–1891,” in Roy Porter and David Wright, eds. The Confinement of the Insane International Perspectives, 1800–1965. (Cambridge, UK: Cambridge University Press, 2003): 100–128; David Wright, “Getting Out of the Asylum: Understanding the Confinement of the Insane in the Nineteenth Century,” Social History of Medicine, 10: 1 (1997): 143–144. See also: Kim E. Nielsen, “Property, Disability, and the Making of the Incompetent Citizen in the United States, 1860s–1940s,” in Burch and Rembis, eds. Disability Histories, 308–320.

  17. 17.

    According to Lundquist, one medical specialist stated, “This is the worst thing that could have happened to your child. She is a mongoloid.” Another medical specialist stated, “Karen, the older sister, is the one you must think of. Her future must be your sole consideration.” Yet another specialist stated, “Karen and her welfare are what you must consider from now on. She can’t have a retarded younger sister around to embarrass and humiliate her.” This same specialist went on to declare, “This child [Jane] must be placed in an institution immediately. By the time she’s seven her features will become more grotesque.” Violet Ebb Lundquist, “I’m Glad We Kept Janie at Home,” Bound (June–July, 1958): 28–31.

  18. 18.

    Katherine Castles, “‘Nice, Average Americans’: Postwar Parents’ Groups and the Defense of the Normal Family,” in Noll and Trent, Mental Retardation in America, 351–370.

  19. 19.

    For more of the parents movement, the NARC, and the self-advocacy movement see: Allison C. Carey, “Parents and Professionals: Parents’ Reflections on Professionals, the Support System, and the Family in the Twentieth-Century United States,” in Burch and Rembis, eds. Disability Histories, 58–76; Allison C. Carey, On the Margins of Citizenship: Intellectual Disability and Civil Rights in Twentieth-Century America. (Philadelphia: Temple University Press, 2009).

  20. 20.

    For more on the disability right movement in the United States, see: Lindsey Patterson, “The Disability Rights Movement in the United States, 1930s-present,” in Michael Rembis, Catherine Kudlick, and Kim E. Nielsen, eds. The Oxford Handbook of Disability History. (Oxford University Press, forthcoming): n.p. For more on the disability rights movement in Canada, see: Dustin Galer, Working Toward Equity: Disability Rights Activism and Employment in Late Twentieth Century Canada. (University of Toronto Press, forthcoming).

  21. 21.

    Although it has been increasingly challenged and made more complex, most disability studies scholars adhere to some form of the “social model” of disability, which states that environmental and social barriers, as well as negative cultural perceptions and stigma disable people, not necessarily their impaired bodies. For more on the social model of disability, see: Tom Shakespeare, Disability Rights and Wrongs Revisited. (London; New York: Routledge, 2014); For a discussion of “rights” as they relate to people with intellectual or developmental disabilities and the parents and self-advocacy movements, see: Carey, On the Margins of Citizenship.

  22. 22.

    Dustin Galer, “‘Hire the Handicapped!’ Disability Rights, Economic Integration and Working Lives in Toronto, Ontario, 1962–2005” PhD diss., (Toronto: University of Toronto, 2014): 169.

  23. 23.

    Raymond A. Lemay, “Deinstitutionalization of People With Developmental Disabilities: A Review of the Literature,” Canadian Journal of Community Mental Health.

  24. 24.

    Michael Rembis, “The New Asylums: Madness and Mass Incarceration in the Neoliberal Era,” in Liat Ben-Moshe, Chris Chapman, and Allison Carey, eds., Disability Incarcerated. (New York: Palgrave, 2014): 139–159.

  25. 25.

    Goodley defines ableism as the structural omission of disabled people from a world built by and for non-disabled humans, while disablism consists of the individual acts of discrimination and marginalization that manifest on both an interpersonal and systemic or institutional level. Dan Goodley, Dis/Ability Studies: Theorising Disablism and Ableism. (New York: Routledge, Taylor & Francis Group, 2014).

  26. 26.

    Tobin Siebers, Disability Theory. (Ann Arbor: University of Michigan Press, 2008). For a more detailed critique of dismodernism, see: David T. Mitchell, Biopolitics of Disability: Neoliberalism, Ablenationalism, and Peripheral Embodiment. (Ann Arbor: University of Michigan Press, 2015): 28–32; Michael Rembis, “Disability Studies.”

  27. 27.

    Mitchell, Biopolitics of Disability, 1–7.

  28. 28.

    Mitchell, Biopolitics of Disability, 1–7.

  29. 29.

    Rayna Rapp and Faye Ginsburg, “Enabling Disability: Rewriting Kinship, Reimagining Citizenship,” Public Culture 13:3 (Duke University Press, 2001): 533–556.

  30. 30.

    Rapp and Ginsburg, “Enabling Disability,” 534.

  31. 31.

    Rapp and Ginsburg, “Enabling Disability,” 536.

  32. 32.

    Rapp and Ginsburg, “Enabling Disability,” 537.

  33. 33.

    In the spirit of disabling domesticity and rewriting home, care, and family, I must reveal my own standpoint. I am a disabled dad. My son was five years old when this book went to press. When my former partner and I decided to have a child, it was clear—or at least I thought—that ours would be a “crip/queer,” nonnormative family and household that could very well exist in two locations and would involve at least three caregivers. Things did not work out as we had planned, and when this manuscript went to press, we were preparing to go to trial over custody and access issues. It became clear early on that my former partner had no intention of creating a crip/queer family and instead sought to create an upper-middle-class “traditional” heteronormative nuclear family, and cast me as an “uninvolved sperm donor”—something I never agreed to and an identity that I never assumed. She sought to oust me from our son’s life, and intended to use my disability against me in an effort to prevent me from gaining increased access and any measure of custody.

  34. 34.

    See, for example: Daniel Blackie, “Disability, Dependency, and the Family in the Early United States,” in Burch and Rembis, eds. Disability Histories, 17–34; Harold Braswell, “My Two Moms: Disability, Queer Kinship, and the Maternal Subject,” Hypatia 30, 1 (Winter 2015): 234–250; Brockley, “Martyred Mothers and Merciful Fathers”; Janice Brockley, “Rearing the Child Who Never Grew: Ideologies of Parenting and Intellectual Disability in American History,” in Noll and Trent, Mental Retardation in America, 130–164; Carey, “Parents and Professionals”; Castles, “‘Nice, Average Americans’”; Michael Carl Gill, Already Doing It: Intellectual Disability and Sexual Agency. (Minneapolis: University of Minnesota Press, 2015); Jordynn Jack, Autism and Gender: From Refrigerator Mothers to Computer Geeks. (Urbana: University of Illinois Press, 2014); Kathleen W. Jones, “Education for Children with Mental Retardation: Parent Activism, Public Policy, and Family Ideology in the 1950s,” in Noll and Trent, Mental Retardation in America, 322–350; Alison Kafer, Feminist, Queer, Crip. (Bloomington: Indiana University Press, 2013); Susannah B. Mintz, ed. Unruly Bodies: Life Writing by Women with Disabilities. (Chapel Hill: University of North Carolina Press, 2007); Rapp and Ginsburg, “Enabling Disability”; Rembis, “Disability Studies”; Richards, “Thomas Cameron’s ‘Pure and Guileless Life,’ 1806–1870”; Richards, “‘Beside Her Sat Her Idiot Child’”; Penny Salvatori, Mary Tremblay, and Joyce Tryssenaar, “Living and Aging with a Developmental Disability: Perspectives of Individuals, Family Members and Service Providers,” Journal on Developmental Disabilities. 10, 1 (2003): 1–19; Melinda Tankard Reist, Defiant Birth: Women Who Resist Medical Eugenics. (North Melbourne, Vic: Spinifex Press, 2006); Taylor and Filax, eds. Disabled Mothers; Bess Williamson, “Electric Moms and Quad Drivers: People with Disabilities Buying, Making, and Using Technology in Postwar America,” American Studies 52:1 (2012): 5–29; Leila Zenderland, “The Parable of the Kallikak Family: Explaining the Meaning of Heredity in 1912,” in Noll and Trent, eds. Mental Retardation in America, 165–185.

  35. 35.

    Disability studies scholars are increasingly recognizing and creating insightful analyses of people’s interdependency with the environment, animals, and inanimate objects. See, for example: Mel Y. Chen, Animacies: Biopolitics, Racial Mattering, and Queer Affect. (Durham, NC: Duke University Press, 2012). For a fuller discussion of the ways in which disability reimagines care work and interdependence within families, see the work of Eva Feder Kittay, especially: Eva Feder Kittay, Love’s Labor: Essays on Women, Equality, and Dependency. (New York: Routledge, 1999).

  36. 36.

    In many ways, this work picks up a thread of analysis that has been critical to women’s history and feminist theorizing since the 1980s. Now classic texts in women’s history such as Elaine Tyler May’s Homeward Bound (Elaine Tyler May, Homeward Bound: American Families in the Cold War Era. (New York: Basic Books, 1988)) and Joanne J. Meyerowitz, Not June Cleaver: Women and Gender in Postwar America, 1945–1960. (Philadelphia: Temple University Press, 1994) forced US historians to acknowledge the critical importance of domesticity in mid-twentieth century US history and gave rise to an entire field of study. In similar ways, Disabling Domesticity refocuses if not redefines scholarship in disability studies.

  37. 37.

    On queer-crip critiques and crip theory, see: Robert McRuer, Crip Theory Cultural Signs of Queerness and Disability. (New York University Press, 2006).

  38. 38.

    An example of the timeliness of this project can be seen in the recent publication of Matt Cook, Queer Domesticities: Homosexuality and Home Life in Twentieth-Century London (Basingstoke: Palgrave Macmillan, 2014).

  39. 39.

    Brockley, “Martyred Mothers and Merciful Fathers”; Kim Q. Hall, Feminist Disability Studies. (Bloomington: Indiana University Press, 2011); Denise Sherer Jacobson & Anne Finger, “Alternative motherhoods,” in Mintz, ed. Unruly Bodies, 137–182; Jack, Autism and Gender; Kafer, Feminist, Queer, Crip; Robert McRuer and Anna Mollow, eds. Sex and Disability. (Durham, NC: Duke University Press, 2012); Julie Avril Minich, Accessible Citizenships: Disability, Nation, and the Cultural Politics of Greater Mexico. (Philadelphia: Temple University Press, 2014); Rapp and Ginsburg, “Enabling Disability”; Rembis, “Disability Studies”; Bonnie G. Smith and Beth Hutchison, Gendering Disability. (New Brunswick, NJ: Rutgers University Press, 2004); Taylor and Filax, eds. Disabled Mothers.

  40. 40.

    Aubrecht and Keefe, “‘Everybody Has Different Levels of Why They Are Here’: Deconstructing Domestication in the Nursing Home Setting” (Michael Rembis, ed. Disabling Domesticity, 2016): n.p.

  41. 41.

    Nilika Mehrotra, Disability, Gender, and State Policy: Exploring Margins. (Jaipur: Rawat Publications, 2013); Karen Nakamura, A Disability of the Soul an Ethnography of Schizophrenia and Mental Illness in Contemporary Japan (Ithaca: Cornell University Press, 2013). For more on the importance of family and kin in places like India and Japan and also a discussion of how this work fits with the larger body of disability studies literature, see: Rembis, “Disability Studies.”

  42. 42.

    See, for example: Sonia Cardenas, Human Rights in Latin America: A Politics of Terror and Hope (Philadelphia: University of Pennsylvania Press, 2010); Ilze Grobbelaar-du Plessis and Tobias van Reenen, eds., Aspects of Disability Law in Africa (Pretoria, South Africa: Pretoria University Law Press (PULP), 2011); Samuel Kabue, et. al., Disability, Society, and Theology: Voices from Africa, (Limuru, Kenya: Zapf Chancery Publishers Africa, 2011); Jitendra Kumar Trivedi and Adarsh Tripathi, Mental Health in South Asia: Ethics, Resources, Programs, and Legislation, (Dordrecht: Springer, 2015); Shridevi Rao and Maya Kalyanpur, eds., South Asia and Disability Studies: Redefining Boundaries and Extending Horizons, (New York: Peter Lang, 2013); Brian Watermeyer, Disability and Social Change: A South African Agenda (Cape Town, South Africa: HSRC Press, 2006).

  43. 43.

    Shaun Grech, “The Spaces of Poverty: Renegotiating Place and Disability in the Global South,” in Karen Soldatic, Hannah Morgan, and Alan Roulstone, eds. Disability, Spaces and Places of Policy Exclusion. (Abingdon, Oxon; New York, NY: Routledge, 2014): 48–63; Shaun Grech, “Disability, Communities of Poverty and the Global South: Debating through Social Capital”, in A. Azzopardi and Shaun Grech, eds., Inclusive Communities: A Critical Reader, (The Netherlands: Sense Publishers, 2012): 69–84; Shaun Grech, “Disability, Poverty, the Majority World and the Neocolonial: Introducing Critical Global Disability Studies.” in Dan Goodley, Bill Hughes, and Lennord Davis, eds., Disability and Social Theory: New Developments and Directions. (London: Palgrave Macmillan): 52–69; Shaun Grech and Dan Goodley, “Doing Disability Research in the Majority World: An Alternative Framework and the Quest for Decolonising Methods,” Journal of Human Development, Disability, and Social Change, 19 2 (2012): 43–55; Shaun Grech, “Comment from the Field: Disability and the Majority World: Challenging Dominant Epistemologies,” Journal of Literary & Cultural Disability Studies, 5 2 (2011): 217–220; Mehrotra, Disability, Gender, and State Policy.

  44. 44.

    Fay Ginsburg and Rayna Rapp echo this argument in a brief essay, “Family,” published in Keywords for Disability Studies. Fay Ginsburg and Rayna Rapp “Family” in Rachel Adams, Benjamin Reiss, and David Serlin, eds. Keywords for Disability Studies (New York: NYU Press, 2015): 81–84.

  45. 45.

    Mehrotra, Disability, Gender, and State Policy, 43.

  46. 46.

    Ginsburg and Rapp “Family,” 82.

  47. 47.

    Rapp and Ginsburg, “Enabling Disability,” 537.