Black Disability Politics

Front matter

BLACK

DISABILITY POLITICS

SAMI SCHALK

Contents

Anti-ableist Approaches to Fighting Disabling Violence

Empowerment through Wellness 81 Black Disability Politics in the National Black Women’s Health Project

The NBWHP and the Black Disability Politics of HIV/AIDS

Introduction

The mandate for Black people in this time ... is to avenge the suffering of our ancestors ... to earn the respect of future generations ... and be willing to be transformed in the service of the work.

—MARY HOOKS, “The Mandate (Chant)”

Read the epigraph again.

If you're a Black person, read it out loud.

Tama Black person who seeks to avenge the suffering of my ancestors and to earn the respect of future generations. I have been and will continue to be transformed by this work. I am not the person I was when I began this book in 2017. Since that time I moved across the country, began a new job, started and ended major relationships, lost my longtime animal companion, published my first book, went on a yearlong book tour, gained tenure, twerked with Lizzo, discovered family I never knew I had, visited my homeland of Jamaica for the first time, stepped into my work as a public intellectual, became a local organizer for Black liberation work, and so much more.

Writing this book, learning about the incredible labor and sacrifices of activists who came before me in the Black Panther Party and the National Black Women’s Health Project, as well as about the continued labor, care, and genius of Black disabled activists and cultural workers today, has changed me, fueled a fire in me that had gone quite dormant. This book that you hold (or scroll through on your screen or listen to) has become my own way of taking up Mary Hooks’s mandate for Black people in this time. I began the project in order to understand how Black people have addressed disability as a political concern. The research process of finding how those freedom fighters addressed the way disability is experienced and, at times, inflicted on Black populations has helped me know that the only way I can understand my own experiences with disability, illness, and pain is through the lens of Blackness, of Black disability.

Through researching and writing this book, I have come to identify as disabled and to do so publicly more and more. At first, I said I had chronic pain stemming from a 2016 car accident. Then I stopped correcting people online who referred to me as disabled. I wasn’t zot disabled; I just—despite over a decade of investment in disability studies—wasn’t sure if I was allowed to really claim disability yet. I already have so many marginalized identities; it felt excessive. As I developed arguments for how Black activists have long addressed disability and health as a political concern in ways that differ from the mainstream white disability rights movement, I began to see more clearly my own relationship to disability and the ways it is shaped by race, gender, and sexuality for me as a fat Black queer woman—a fat Black queer disabled woman. I will write more about this someday, in another space, but the short version is that as a person with depression, disordered eating, chronic pain, and anxiety, I am unquestionably disabled. What has prevented me from feeling that I can claim disability is the way my disabilities do not fit into the typical legal and medical models of disability and accommodations, the ways white disabled people especially have been dismissive of my understanding of how racism, sexism, homophobia, classism, and fatphobia have materially created, sustained, and exacerbated my disabilities. Icannot get on board with approaches to disability that do not understand it as inherently, inextricably tied to racism and other oppressions. I cannot and will not promote a disability-first or disability-pride-only analysis—and the research that undergirds this book has only solidified and clarified for me these beliefs that I once held more quietly and tentatively. In claiming this Black disability identity, I often use we, ours, and us when referring to disabled people, Black people, and Black disabled people. I refuse to use they as if I am separate from the communities I write about, live within, and learn from every day.

I write this personal narrative first to invite you, my readers and listeners, into this space. Are you willing to not only do the work but be transformed by it? Are you willing to read not only for historical information and social theory but for strategies and methods that you can take into your own work as a scholar, an activist, an artist, a person living in a world that desperately needs transformation? Take a moment to think about why you're reading this, what you want to take away from it, and how it might be useful to you and your people. I offer itas one part ofa much larger conversation about collective liberation. I hope it helps. In particular, I hope it helps Black people.

This is a book written for Black people, especially Black disabled people. By this I mean that my primary audience is Black scholars, activists, writers, and artists who might take up this theory of Black disability politics in their work for Black liberation. Of course, I understand that this book will be read by non-Black people. I certainly hope that’s the case, but this book is not for them. If you are a non-Black person, imagine that you have just walked into my living room, where I’m having a conversation with my Black family and friends. You are welcome to come in, listen, and learn from the conversation, maybe even contribute to it when appropriate, but the conversation, the space of this book, is not for or about you. For my Black readers: Welcome. Settle into this space. Mark the pages. Make it yours. Pass it along. If this book is helpful to you, meaningful to you, that is what matters here. If these ideas I’ve developed get us even slightly closer to collective liberation, then I’ve done what I set out to do.

On January 18, 2016, a Black queer liberation collective called Black.Seed shut down the Bay Bridge in San Francisco, displaying three large white banners with pink lettering across the roadway that read: Black Health Matters. Figure 1.1 is one helicopter view of the protest that captured my attention that day.

The protest sought to move the city away from “police murders, rising housing costs, rapid gentrification, and apathetic city officials” and toward “an increase in the health and wellbeing of all Black people in Oakland & San Francisco” by making a series of demands for divestment from policing, investment in affordable housing, and the resignation of several city officials and police officers.’ The optics of the action were impressive: newshelicopter shots revealed hundreds of cars backed up on the bridge as the protesters remained chained to cars and each other. Police arrived approximately thirty minutes after the shutdown began, and twenty-five protesters were arrested.

I followed the protest via Twitter as it happened. Although at the time I was in the middle of revising my first book manuscript, I took a break from that work to read and watch the social media and mainstream news coverage, saving images and screenshots. At that time, the book you now hold in your hands (or read on your screen or listen to) was still just the germ of an idea, just an observation that disability often appears obscurely or at the

FIGURE I.1 The pink Black Health Matters banners across the Bay Bridge during the Black.Seed protest on January 18, 2016.

margins of Black activism and cultural work, a hunch that there was more to Black approaches to disability politics than what existed in the academic literature. Later, when I returned to the Black.Seed bridge action to write this introduction, I found a video about the protest that featured an interview with Alicia Bell, a member of Black.Seed, who provided details about what the action entailed.” In line with Dr. Martin Luther King’s radical legacy of disruptive nonviolent protest, Black.Seed coordinated dozens of members to shut down the bridge by stopping a single car in each lane of traffic and then chaining themselves to the cars and each other. In addition to the prominent Black Health Matters sign, which was most visible in helicopter shots of the protest, other signs on the bridge called for an end to the criminalization of Blackness and justice for Black people killed by police. Further, the organizers set up an altar with the names of people harmed by state violence, on which people placed offerings. The use of the altar within a nonviolent protest against anti-Black state violence underscores that Black.Seed and similar Black activist groups recognize the importance of not merely ending state and interpersonal violence against Black people but also promoting our health, healing, and well-being, physically, mentally, and spiritually. The title of this introduction comes from the powerful image of Black.Seed’s sign across the San Francisco Bay Bridge, blocking hundreds of cars from crossing.

More broadly, the motivations behind this book, Black Disability Politics, connect directly with the approaches and demands of this particular act of civil disobedience. The protest explicitly included mention of not just Black lives but Black health and well-being—a suggestion that the deeper concern is not just the murder of Black people by police but all the ways Black people are harmed via housing, finances, and more. Black.Seed’s statement, therefore, draws attention to not only Black death but also Black life and the conditions necessary for Black lives to not merely subsist or survive but thrive. Black Disability Politics takes inspiration from Black.Seed and other social justice movements and organizations led by Black people, especially Black disabled people, Black women, and Black queer and trans people. More specifically, Black Disability Politics analyzes how issues of disability, broadly construed, have been and continue to be incorporated into Black activism from the 1970s to the present. I define Black disability politics as anti-ableist arguments and actions performed by Black cultural workers. Black disability politics are often performed in solidarity with disabled people writ large, but the articulation and enactment of Black disability politics do not necessarily center traditional disability rights language and approaches, such as disability pride or civil rights inclusion; instead, they prioritize an understanding of disability within the context of white supremacy. The book therefore identifies and analyzes examples of Black disability politics in order to claim, celebrate, understand, and learn from this legacy in all its brilliance and imperfection. My hope is to provide a framework for understanding Black disability politics that benefits scholars, activists, and cultural workers who wish to engage in coalitional and intersectional liberation practices. We must learn from each other if we are to build a new world together.

Fields and Frameworks: Black Disability Studies and Disability Justice

Academically, this book contributes to the emergent field of Black disability studies. Merging scholarship, theories, and methods from disability studies and Black studies, as well as from postcolonial studies and feminist studies, especially Black feminist theory, Black disability studies explores both the lives of Black disabled people and the relationship between race and (dis)ability as systems of privilege and oppression. Black disability studies scholarship traces how disability has appeared among Black people, how disability has been treated and understood within Black communities, and how Blackness and disability have been—and continue to be—discursively linked in various cultures. As this field continues to develop and expand beyond the boundaries of the United States, scholars such as Christopher Bell, Nirmala Erevelles, Theri A. Pickens, Moya Bailey, myself, and others have increasingly demonstrated the ways that disability, as an identity, an experience, and a political category, has been conceptualized and approached differently by Black activists and intellectuals than by white activists and intellectuals, thereby requiring changes in scholarly and activist methods and frameworks.*

For instance, there is a common narrative in disability studies that Black people have distanced themselves from concepts of disability and disability identity because of the way discourses of disability have been used to justify racist oppression. This narrative is often connected in the field with Douglas Banyton’s frequently cited article “Disability and the Justification of Inequality in American History.” The article’s central thesis is that disability appears all over American history if we simply look closely enough. However, Baynton is often cited more specifically for his argument that marginalized groups, such as Black people, women, and immigrants, had discourses of disability foisted on them as justification for their exclusion from full rights and citizenship. In response, Baynton argues, these groups distanced themselves from disability as a means of accessing certain rights and freedoms. By distancing themselves from disability, he further contends, these other marginalized groups left unquestioned the notion that people with disabilities do not deserve full rights and citizenship, thereby passively accepting that disability is a justifiable rationale for discrimination and exclusion.

Baynton’s article, which I myself frequently cite and teach, is incredibly important and useful; however, its narrative has become in some ways canon in the field of disability studies, used to explain why Black art, culture, and politics use disability merely as a metaphor for the impact of racism and often fail to incorporate disability politics, culture, or pride as typically understood in white disability studies and the disability rights movement. This narrative of Black distancing from disability is not wholly untrue, as much scholarship has demonstrated. However, disability studies scholars often use this narrative about Black people’s relationship to disability without considering two key factors: first, the whiteness and racism of the disability rights movement and disability studies as a field, which often excludes or alienates Black disabled people; and, second, the possibility that disability politics may actually exist in Black activism and cultural work but manifest and operate in ways that do not look the same as disability politics in the mainstream movement. Recent work in Black disability studies demonstrates the multiple complex and nuanced ways that Black people, historically and contemporarily, have engaged with disability beyond simple distancing or denial.* Collectively, my colleagues in Black disability studies have made clear that the narrative of Black disavowal of disability is merely a convenient, partial narrative that has remained underquestioned and underexplored within disability studies as a whole. This book aims to contribute to this growing body of knowledge by developing a theory of what Black disability politics entail.

In addition to my intellectual foundations in Black disability studies, my work is also strongly influenced by the disability justice movement. Disability justice is a relatively new activist practice and framework developed in the mid-2000s by disabled people of color, disabled queer people, and disabled queer people of color, such as Patty Berne, Leroy Moore, Leah Lakshmi Piepzna-Samarasinha, and Mia Mingus as well as groups like Sins Invalid, the Disability Justice Collective, and Azola Story. Disability justice builds on and extends the work of the early disability rights movement, which was often very white and focused on the single issue of disability rights. Those involved with disability justice readily acknowledge that they appreciate and benefit from the advancements achieved by the early disability rights movement. However, not dissimilar from how the Black Panthers, discussed in chapters 1 and 2, were responding to the fact that Black Americans had achieved legal civil rights, yet were still socially and materially oppressed, disability justice practitioners seek a broader understanding of anti-ableism, one not limited to state-sanctioned individual rights, which often primarily benefit disabled people who are already relatively privileged by race, class, gender, sexuality, and/or citizenship status.

Further, disability justice is an inherently intersectional approach. Patty Berne writes that disability justice understands white supremacy and ableism as “inextricably entwined, both forged in the crucible of colonial conquest and capitalist domination.”¢ Disability justice values the leadership of those most impacted (i.e., multiply marginalized disabled people), anticapitalism, cross-movement organizing, sustainability, cross-disability solidarity, interdependence, collective access, and collective liberation.” Practitioners of disability justice recognize that their work “already connects and overlaps with many movements and communities’ work,’ especially work by feminist and queer people of color within reproductive justice, transformative justice, and healing justice movements.® Disability justice work brings important knowledge, theory, and practices to contemporary antiracist activism. A disability justice framework also reveals how the disability rights movement has overlooked or dismissed Black activism around disability. Throughout this book I analyze how Black cultural workers have engaged issues of disability in the late twentieth and early twenty-first centuries from the perspective of disability justice, aiming to articulate a theory of what constitutes Black disability politics specifically. By taking up this research and analysis, I hope to help reclaim a legacy of disability justice work in Black liberation movements and develop a collection of methods, approaches, and lessons we can take away from this history in the name of continued quests for freedom.

In naming my primary fields and frameworks as Black disability studies and disability justice, I am inherently claiming an interdisciplinary, perhaps even undisciplined, approach in this book, breaking some norms of academic research and writing. My sites of analysis vary from the archives of Black activist organizations to interviews, social media, and blogs, while my scholarly influences span disciplines like history, literary studies, public health, and media studies. This is not a history of Black disability politics. Rather, this book is a historically informed analysis of a continually developing political theory that seeks to understand and dismantle ableist and racist oppressions. I turn to history because it benefits us as Black people to know and learn from what our ancestors did, to understand and honor them, and to continue their legacy of finding liberation. It is comforting to know we are not the first or the last, or alone, in our fight for Black lives, especially Black disabled lives. I am indebted to the historians whose work I build on, but in the process of researching and writing this book, I have let my subject and my political investments guide me more than my loyalty to the boundaries of any particular academic discipline or field. I write for a Black scholarly and activist audience first and foremost with the goal of helping us move toward collective liberation via scholarship and theory, and I use whatever disciplinary tools and approaches I find most useful in this work. Black Disability Politics refuses to be disciplined.

This undisciplined nature may be particularly evident in the way I talk about and define disability. A major intervention of Black and critical race disability studies is to expand our conceptualization of disability. This expansion draws on work in disability justice and crip theory, a strain of disability studies theorizing (inspired by queer theory) that encourages a move away from a primarily identity-based approach to disability and toward a theoretical approach that seeks to trace how disability functions as an ideology, epistemology, and system of oppression in addition to an identity and lived experience.” Relatedly, disability justice activists “are building an analysis that includes political and historical understandings of disability, bodies, ableism, pace, illness, care, cure, aging, the medical industrial complex and access.”!° Disability justice activists often include terms like sick and chronically ill to acknowledge and include people who may not identify as disabled, especially those who have been made sick or ill by white supremacist and heteropatriarchal violence and neglect. Similarly, crip theorist Alison Kafer describes disability as an expansive “political, and therefore contested and contestable category” and argues for recognizing the collective affinities among disabled, impaired, sick, ill, and Mad people, who are connected not by essential or inherent qualities but by the related oppressions we experience for our nonnormative bodyminds."! These two similar approaches to disability as a political and social concern matter because disability studies and the disability rights movement have each often focused on apparent physical and sensory disabilities rather than on cognitive and mental disabilities or chronic illnesses. As Kafer notes, this “oversight is all the more troubling given the fact that diabetes occurs disproportionately” among racial minorities and that “asthma is a common side-effect of living in heavily polluted neighborhoods, which, unsurprisingly, are more likely to be populated by poor people”? In other words, existing disability studies and disability rights frameworks for understanding and defining disability have been developed with little attention to the types of disability most common in poor and racialized communities. These white disability studies frameworks therefore are unable to fully account for the ways disability politics manifest in Black communities and activism.

The expansive understanding of disability I use in this book requires engagement with not only disability studies but also health science studies, medical humanities, and the history of science and medicine. I have argued elsewhere that scholars of race and disability should include issues of illness and health in their work because so many Black folks and other people of color experience disability as the impact of capitalism, interpersonal violence, state violence, and/or state neglect.’ It is also important that scholars and practitioners of health science studies, medical humanities, and the history of science and medicine understand and engage with disability studies and disability justice in order to better theorize and respond to disability from an explicitly political and social position that centers the voices and experiences of disabled and ill people of color. As the individual chapters of this book show, we cannot understand Black disability politics without engaging histories of anti-Black violence, scientific and medical racism, health disparities, health activism, and environmental racism. We also cannot understand Black disability politics without exploring how Black people have conceptualized not only disability, illness, and disease but also health, wellness, and healing within our own communities.

This book, Black Disability Politics, aims to bring about a better understanding of its titular term by exploring how specific Black organizations and individuals have engaged the intersections of and relationship between Blackness and disability, or racism and ableism, in their work. My time period for this book spans from the 1970s to the 2o10s, focusing on Black disability politics articulated and enacted alongside or in the wake of the contemporary disability rights movement.'*I selected this period in order to assess how Black people have engaged issues of disability in moments when disability rights activism and legislation were already in existence, that is, moments when Black cultural workers could reasonably be expected to have some awareness of disability rights. This is not to say that Black disability politics or the disability rights movement began in the 1970s. There is clear historical evidence that this is not the case, but by the 1970s the disability rights movement was unquestionably in full effect." Therefore, selecting this time period as my focus allows me to trace how Black people have engaged disability politics in comparison to the mainstream disability rights movement. Again, while this work is historically informed by archival research, it is not acomprehensive history of Black disability politics or even the Black disability politics of the organizations I focus on. This book is one part of a larger academic, activist, and cultural conversation that I want to bring more people into through my work so that we can collectively learn and know more in order to do and be better.

As this section has already indicated, I take a broad, interdisciplinary approach that uses disability studies asa method rather than an object-oriented area of study that would focus exclusively on the lives of disabled people and representations of disability.° This conceptualization of disability studies as a politicized approach to research entails critical exploration of how (dis)ability operates as a social system, historically, discursively, ideologically, and materially in our world. This matters for my theorization of Black disability politics because, at times, the articulations and enactments of Black disability politics I analyze are not performed exclusively by Black disabled people. This is important for activist readers to understand: you can do the work of disability justice without being disabled, though multiply marginalized disabled people’s expertise and leadership should be centered. The role of nondisabled Black people specifically in the work of Black disability politics also matters because, as I demonstrate throughout the book, ableism and racism are so deeply linked that we cannot dismantle white supremacy and end its violence against us as a collective if we do not also understand and address the role of ableism in shaping Black lives.

While the articulations and enactments of Black disability politics explored in this book do not erase or trump those moments when Black cultural workers have distanced themselves from disability, better understanding other ways Black people have engaged with disability can help build the theoretical tools necessary for Black disability studies scholarship. Further, assessing both the accomplishments and missteps of Black disability political work can help activists, intellectuals, and artists today. We can neither uncritically romanticize nor trash our radical movements of the past, and I do my best to balance appreciation, honor, and respect for the work of those who came before me with a desire for more inclusive radical politics that leave no one behind. I aim to help us learn lessons from Black disability politics historically so that we may continue to cocreate better coalitional politics that remain attuned to how racism and ableism, often in conjunction with sexism, classism, queerphobia, and transphobia, collude in the lives of all Black people, disabled or not. Let me say that one more time: ableism negatively impacts all Black people, whether or not you consider yourself to be disabled. All Black folks need to know this and take it to heart. Understanding these cultural locations of Black disability politics allows us to sharpen our political and theoretical approaches as Black cultural workers in our quest for Black liberation.

Defining Black Disability Politics

What, then, are Black disability politics exactly? First, I define disability politics generally as engagement with disability as a social and political rather than individual and medical concern. Following Kafer, who encourages an “expansive approach to disability politics” my understanding of this term is not limited to policy or law.” I define Black disability politics as disability politics that are articulated (in text, speech, political platforms, and ideologies) or enacted (in activism, organizing, lobbying, art, and interpersonal dynamics) by Black cultural workers—an umbrella term for activists, artists, writers, scholars, intellectuals, and others whose work directly responds to and influences culture. In other words, Black disability politics is my term for how Black folks engage with disability from a liberation and justice perspective. Black disability politics can be understood as part of both disability justice and Black liberation movements writ large, providing lessons for people within both movements, whether or

BLACK HEALTH MATTERS II not individuals are Black or disabled. Black disability politics are developed, articulated, and enacted by Black people, but this work may influence or be influenced by the disability politics of other racial groups."®

In addition to articulating this primary definition of Black disability politics, this book also identifies and analyzes four common qualities of Black disability politics. Based on my research, I argue that when Black cultural workers engage with disability, their approaches tend to be intersectional but race centered, not (necessarily) based in disability identity, contextualized and historicized, and holistic. By identifying and analyzing qualities of Black disability politics, I provide a theoretical framework for interpreting articulations and enactments of Black disability politics—one that acknowledges, seeks to understand, and accounts for the distinct ways that Black people have experienced, engaged, and encountered the (dis)ability system. My hope is that my identification and analysis of the major qualities of Black disability politics here will prove useful to Black and disability studies scholars researching Black engagement with disability and to other Black cultural workers seeking to better integrate disability politics into their work. Further, I hope that my theorization of Black disability politics may be adaptable in form, if not substance, for other critical race and disability studies scholars exploring how racialized populations have articulated and enacted their own forms of disability politics.!? In what follows, I briefly explain each of the central qualities of Black disability politics, which are further explored and analyzed through concrete examples in the chapters to come.

Intersectional but Race Centered

In researching Black engagement with disability politics across multiple cultural locations, I found that the work is always intersectional, but the emphasis tends to be on race/racism as the major analytic lens. By intersectional, I mean that the work is grappling with the relationship of multiple oppressions, not that the focus is on the intersection of specific identities, as I explain further in the next quality.”° By iztersectional but race centered, I mean that articulations and engagements of Black disability politics tend to be most concerned with the material impact of racism as it intersects with disability and overlaps with ableism, though the words disability and ableism may never be used. Disability is included and addressed, but this is often done within larger racial justice topics rather than as the main investment or concern. Black disability politics are often also feminist, anticapitalist, and anti-imperialist, but generally they are first and foremost antiracist politics operating in solidarity with disabled people. There are both benefits and pitfalls to this first quality. I apply the label of Black disability politics to Black cultural work even when it is imperfect or conflicting, even when solidarity and coalition are intended but falter. My interest is less in attempting to locate or dictate the perfect marriage of anti-ableist and antiracist movements and more in highlighting how investment in Black lives by Black people has often necessitated grappling with disability and ableism, whether or not the Black cultural workers involved or white leaders in disability rights and disability studies claim or recognize such work as disability politics. I argue that anti-ableism may be incorporated into antiracist work in a variety of ways that differ from what is typically expressed or prioritized within traditional disability studies and mainstream disability rights activism. One key method in locating Black disability politics, therefore, is understanding how the political and cultural work can be intersectional but race centered and still operate in solidarity with disabled people.