This excerpt is from the Black Women Best (BWB) congressional report produced by LibGen and the Congressional Caucus on Black Women and Girls (CCBWG). It was written by Azza Altiraifi. Here, we use the terms “disabled people” and “people with disabilities” interchangeably. The use of identity-first language honors the linguistic shift that self-advocates within the disability community have ushered in over the past years, while affirming that our community is not a monolith and each of us has a right to self-identify as we so choose.
Race, Disability, and Power
It is impossible to fully understand, let alone redress, the historical and contemporary forms of oppression that Black women endure without examining ableism’s central role in preserving and justifying such oppression. Ableism, a system targeting disabled people whose bodies and minds deviate from socially constructed norms, is as integral to the project of white supremacy as race and labor.
There is no singular legal definition of disability in the US, as it is a complex and dynamic concept. The most expansive definition comes from the Americans with Disabilities Act (ADA) of 1990, which defines disability as “a physical or mental impairment that substantially limits one or more major life activities.” Elsewhere in government, however, disability is much more narrowly defined, notably by agencies seeking to restrict eligibility for public benefits and income support programs. While the legal bounds of disability have shifted over time based on state interests and social pressures, the primary issue disability policy must contend with remains one of power and powerlessness. Across all domains of life, Black disabled women and other disabled people face compounded oppression, social isolation, and exploitation.
The entanglement of disability and race is linked to state efforts to optimize labor output and accelerate economic growth. Indeed, the very designation of disability has long been tied to one’s labor production, which is itself heavily racialized and gendered. In the 19th century, for example, chattel slavery was legitimized by medical authorities who claimed that Black people suffered cognitive impairments that must be managed through their enslavement and brutalization. With the rise of industrial America, increasingly routinized and time-regulated paid labor structures led to new disability designations for those unable to conform. From the antebellum period to the present, pathologization and medicalization are wielded as tools of social control, stratifying groups in service of the political and economic interests of those in power. The resulting matrix of mass institutionalization, eugenics, and criminalization continues to marginalize Black women today, leading to premature death.
Disability prevalence in the US is also increasing, with COVID-19 accelerating this trend. In 2021, 1.2 million more people identified as having a disability compared to 2020. Much like race, disability is heavily spatialized, meaning that incidence of disability is more heavily concentrated in certain geographic areas and within specific communities. Far from incidental, this is the outcome of what geographer Ruth Wilson Gilmore describes as the “state-sanctioned production and exploitation of group-differentiated vulnerability,” underscoring that ableism and racism are co-constitutive. For instance, racial segregation clusters Black people in toxic environments where they are more likely to be exposed to illness-causing environmental hazards and less likely to have access to life-sustaining resources, such as hospitals, clean water, and housing. Across the US, Black people consistently have higher rates of disability than white people, at rates up to 2.5 times greater. This racialized disparity in disability prevalence dramatically increases with age, at least partially reflecting the cumulative disabling effects of racial discrimination over the life course.
Ableism and Racism in US Institutions: A Snapshot
Across numerous economic indicators, Black disabled people face precarity and financial marginalization. In 2017, the poverty rate for working-age people with disabilities was 26.1 percent — more than twice the rate of non-disabled people of the same age group. For Black people with disabilities, however, the poverty rate was a staggering 37 percent.
Discriminatory features of the US labor market and the punitive design of public benefits programs hinder the economic mobility of Black disabled women. In 2020, only 27 percent of working age Black women with disabilities were employed, compared with 33.7 percent of white disabled women and 40.3 percent of white men with disabilities. Disabled people who are excluded from the paid labor economy are often forced to rely on public assistance programs which typically impose strict asset limits, severely restrict eligibility, and provide meager support. In 2022, for example, the maximum federal benefit for Supplemental Security Income, a key anti-poverty program for people with disabilities, was just $841 per month. Even when disabled women do find employment, they often face discrimination in pay and promotions or are clustered in precarious or part-time roles. Today, thousands of disabled workers continue to labor in segregated settings for sub-minimum wages, due to an archaic carveout in the Fair Labor Standards Act (FLSA).
Within carceral contexts, this toxic interplay between racism, ableism, and sexism comes into even sharper focus. Up to half of those killed by police each year are reported to have a disability. (For more on the harms of policing and incarceration, refer to the “Disempowering Police and Prisons” section of the report.) Black women are more likely to be incarcerated than white women, and according to the latest data from the Bureau of Justice Statistics (BJS), state and federal prisoners are about two and a half times as likely as the general adult population to report having a disability or chronic illness. Other factors—such as the unmitigated spread of COVID-19 within congregate settings, disabling conditions within the criminal legal system, and an aging prison population — contribute to the disproportionately high rates of disability among incarcerated people.
Carcerality and surveillance extends beyond the walls of prisons and jails. People with mental health disabilities, and particularly Black women, face constant risk of involuntary institutionalization and are frequently subject to coercive modes of treatment (as noted in the mental health section of the report). Psychiatric facilities, nursing facilities, and other restrictive congregate care settings are sites of medical incarceration where abuse is rampant—and meaningful accountability non-existent. Absent the robust investments and social infrastructure needed to guarantee all disabled people access to home and community-based care and supports, disabled people are instead ensnared in a complex web of surveillance, autonomy restrictions, and isolation.
These policy arrangements cumulatively cast Black disabled life as expendable. Disability Justice (DJ) — a framework created by disabled queer activists of color — provides a roadmap that can be jointly applied with BWB to disrupt ableist systems of domination and exploitation. While DJ is a framework focused primarily on the liberatory possibilities of community organizing and grassroots movement, its 10 central tenets carry transformative potential for policymaking too.
Policy Recommendations Rooted in BWB and DJ
At a baseline, policymaking rooted in BWB and DJ must unconditionally guarantee Black disabled women’s access to life-giving resources and community-rooted care. These guarantees must also be paired with policies that divert funding and resources away from criminalization and surveillance; disrupt and reverse the capture of public goods and resources by private interests; and meaningfully involve Black disabled women in policy ideation, design, and implementation. Critically, this will require robust and intersectional data collection across all sectors.
First, policymakers must act swiftly to provide robust, permanent, dedicated funding for Home and Community-Based Services (HCBS) and eliminate Medicaid’s institutional bias. They must also ensure full implementation of the HCBS Settings Rule and eliminate barriers to accessing safe, accessible, and affordable housing options. Along with the HCBS Settings Rule, strict enforcement of the ADA’s integration mandate is vital to redressing the social isolation, loss of autonomy, and threat of institutionalization Black disabled women disproportionately bear. The ADA’s integration mandate can also be used to curtail the ever expanding reach of the criminal legal system.
To transform the economic conditions of Black disabled women, policymakers must raise the federal monthly benefit and index it to inflation. In the long term, public benefits administration must be transformed entirely to eliminate cumbersome barriers and asset limits, while ensuring that anyone who needs care receives it. To protect disabled workers, policymakers must promote and protect workers’ rights to unionize; guarantee access to paid family and medical leave; increase the federal minimum wage and abolish sub-minimum wages; and provide robust investments in accessible public transit options.
Universal health coverage must also be guaranteed. By rationing access to health care by employment status, age, disability diagnosis, and citizenship our health systems cause premature death and saddle disabled people of color with disproportionately high medical debt burdens. A profit-driven health system is incompatible with life. As such, guaranteed universal health coverage must also be paired with medical debt relief which is disproportionately borne by Black households and contributes to the expanding racial wealth gap.
Ruth Wilson Gilmore reflects that “where life is precious, life is precious.” By applying BWB and DJ jointly, we dismantle all policies that are incompatible with all life. When Black disabled life is precious, health care, nutrition, housing, and access to community are not rationed by one’s labor output, age, disability status, or ability to conform to racist norms. When Black disabled women’s lives are valued in policy and practice, then we disrupt the systems which normalize and produce premature death. Cultivating in their place social systems rooted in an ethic of community care, interdependence, and collective freedom.