White Supremacy on Wheels: The History, Practice, and Experience of Racism in the Disability Community
- Lois Curtis Center
- Jun 23
- 8 min read
Updated: 18 minutes ago
The blacks were angry that they had to sit at the back of the bus. People with disabilities were upset that they couldn’t get on the bus at all. -Mark Johnson, Mike Oxford, Gina McDonald, Maggie Shreve, June Kailes, and countless other leaders of the disability rights movement throughout the movement’s history.
#BigDisCo, or the disability services community, is a 200 billion dollar industry in the US. It is absolutely dependent on the exploited labor, or taxpayer-funded servitude, of Black and Brown women. It absolutely shuts out disabled Black and Brown people, which results in the overrepresentation of disabled melanated people in incarcerated settings. It is white supremacy on wheels.
And it's time we, as a society, talk about it.
People with disabilities, including people who have aged into disability, are capable of engaging in marginalizing, oppressive, and otherwise disrespectful behavior and should be held accountable.
However, because our society has been conditioned to view people with disabilities as either incapable of being abusive, or exempt from accountability, this leads to personal care attendants, who are predominantly melanated women, being subjected to oppressive behavior from consumers without hope of any recourse. It is, in fact, a major, albeit unspoken, cause for the extremely high attrition rates for direct support professionals in the US.
We at the Lois Curtis Center assert that this situation is unacceptable and are committed to speaking out about it, even if no one else will. ESPECIALLY because no one else will. We recognize that this manifestation of white supremacy is hidden in plain sight in several ways that we unpack in this essay.
Inspiration or Appropriation?
The disability rights movement, began, in part, because white disabled people and their loved ones saw their maids and cooks attaining rights as a result of the Black civil rights movement of the mid-20th century and balked at the idea that Black people could attain a station in society that could surpass their own.
The disability rights movement, “inspired” by the Black civil rights movement, appropriated many of the slogans and songs- and approaches- Black people employed in movement work. Despite the performative and tokenizing “inclusion” of a handful of melanated leaders, Black and Brown people were shut out of leadership opportunities in both the disability rights movement and, as it advanced and spun off into brick-and-mortar disability rights organizations.
Key leaders in the early disability rights movement vilified Rosa Parks for pulling out of a 1986 rally in Detroit for a number of reasons, one of them being frustration from Black Detroiters about white disabled peoples’ appropriation of the Black civil rights movement and their entitled descent upon a city ravaged by systemic racism and the consequences of white flight.
Throughout the history of the disability rights movement and up to today, melanated people have struggled to be included and are effectively told to leave their race at the door and focus on disability “solidarity”. Black and Brown people that have a modicum of success in the movement attain that through “playing the game”, including gatekeeping other Black and Brown people out of the movement’s spaces lest they become competition.
Caregiving: Brought to You by Black and Brown Women Since 1619
With regard to the provision of personal care services to disabled people- it is estimated that 6 out of 10 PCA’s in the US are racially marginalized. Melanated women, specifically, who engage in strenuous (to the point of causing disabilities for many) labor, including lifting/bathing/bowel programming for disabled people for shifts that can last twelve hours or more, almost always for less pay than a cashier at Walmart receives. Workers, as they labor, are subjected to name-calling, accusations of theft, neighbors calling the police to report them for trespassing in the homes they are working in, and microaggressions from the agencies that employ them.
Black women have been assisting white people in the activities of daily living in their homes for as long as Black women have been in the US- providing toileting, bathing, grooming, dressing, wet nursing, cleaning, cooking, and other domestic tasks. And they’ve done so under terrible working conditions- outright enslavement until 1865 and, then, even after 1865, contending with racist abuse at the hands of white people who are, to varying degrees, vulnerable and dependent upon the care of the Black women they subject to disdain and disrespect.
This history intersects with the nursing profession, as well. Dr. Dominique Tobbell of the University of Virginia writes:
Enslaved women… cared for the families of their enslavers, attending births and providing child care, sick care, and elder care. They also served as surgical nurses for physicians such as J. Marion Sims, who performed brutal experimental surgeries on enslaved women. Enslavers, including many physicians, valued their work but simultaneously denigrated the intellectual capacities of enslaved women, using their perceived intellectual and biological differences as justification for their enslavement and for the violence enacted upon them in the name of medical experimentation. As historian Deirdre Cooper Owens documents, white physicians assumed that enslaved women were intellectually inferior but nevertheless relied on enslaved women as nurses and surgical assistants—work that required high levels of skill and in which intelligence and judgment were valued.
Carve Outs for the Select Few
And then there’s the experience of being a melanated disabled person, which is an experience of erasure and disparity. Because “rights” are all about making space for a group of people that was never meant to contain them, #BigDisCo has prioritized putting the following people front and center in their movement work:
-middle/upper class white children who elicit pity and/or inspire-middle/upper class white men in wheelchairs-middle/upper class white mothers of children with disabilities
With the thinking that they would connect best with lawmakers and that whatever “rights” are granted will, eventually, reach everyone within the disability community.
As a result, when “rights” are attained, it is only the most privileged members of #BigDisCo that benefit, particularly when it comes to access to Home and Community Based Services (HCBS), which are federal funds that facilitate disabled people living independently (with supports provided by PCA’s) and not in institutions, nursing homes, or group homes.
And, when “rights” and/or HCBS are threatened, #BigDisCo prioritizes “carving out” or protecting the aforementioned members of the disability community from potential harm, leaving everyone else to fend for themselves.
*Because trickle down advocacy works about as well as trickle down economics do.*
Prison- The Biggest Institutional Setting of them All
White people as the default setting for disability also impacts research and policy work pertaining to disability in the US- long story short, melanated disabled people are absent from both. This means that, as mystifying as the disability experience, in general, my be for mainstream USA, the disability experience of melanated disabled people mystifying for disability professionals, providers of services/supports, and special education teachers.
As a result, Black and Brown disabled children are misdiagnosed/overdiagnosed/underdiagnosed/diagnosed late/not diagnosed at all at stunning rates in comparison to white disabled children.
This is THE precursor to the preschool to prison pipeline for Black disabled people- according to the Department of Justice, over 40% of people who are/have been/will be incarcerated in the US is disabled.
Ironically enough, many disabled Black and Brown people don’t encounter disability services UNTIL they become incarcerated.
Incarcerated settings are as much institutional settings as nursing homes and group homes are. However, the disability rights movement largely ignores the disabled people who are incarcerated and, oftentimes, uses incarcerated people as a negative foil when engaged in disability advocacy, conflating “criminals” with “vulnerable people with disabilities” who feel “imprisoned” in their homes because of governmental regulations regarding Electronic Visit Verification (EVV) for HCBS.
DEI(But Carve Out the “A”) is Not Just “Not Enough”- It’s Dead.
And, as DEI breathes its final breaths, everyone is acknowledging what we’ve all known all along- besides the fact that non-Black people, marginalized white people, in particular, have a long history of fighting for their “inclusion” in DEI when advantageous to do so- DEI has always been about Black people.
This is especially true when it’s time to malign DEI.
Nevertheless, #BigDisCo 's push for inclusion within DEI was particularly apparent during the Biden years when engaging in DEI rendered applicants for federal funding more attractive.
This wasn’t done to acknowledge the shocking levels of inequity experienced by PCAs and other direct support professionals (DSPs) throughout #BigDisCo, workers that are, more often than not, melanated, female, and, increasingly, immigrants.
This also wasn’t done in solidarity with Black and Brown people with disabilities to acknowledge and address the barriers to access to services and supports that lead to a disproportionate number of Black and brown disabled people being cut off from HCBS and, thus, vulnerable to institutionalization, incarceration, homelessness, and death.
No, #BigDisCo engaged in systems advocacy pertaining to DEI to get an “A”- for “accessibility”- being added to the acronym, thus giving white people with disabilities the opportunity to center themselves in conversations pertaining to marginalized people.
Meanwhile, #BigDisCo has done nothing to address and remedy the barriers to accessing disability services and supports that so many melanated disabled people experience: that particular manifestation of “accessibility” was not a priority when it pushed for the addition of the “A” to DEI during the Biden years.
Disability isn’t a controversial identity is a refrain currently making the rounds in the #BigDisCo as leaders formulate their arguments for “carving out” disabled people from DEI backlash- often articulated by the very people who fought for the “A” during the Biden years.
Perhaps that’s true- if you are white.
Say Less- Or Else
One big reason why disability advocacy largely ignores the melanated disabled experience is because it, in and of itself, is so intimately tied to the trauma (both epigenetic and ongoing) of being subjected to the horrors of white supremacy 24/7. Melanated people are disabled and killed by police at alarming rates- and the rates are even higher for Black and Brown already disabled people. Racism is a public health crisis for Black and Brown people that results in PTSD, anxiety, depression, and other conditions recognized as disabilities by the Americans with Disabilities Act (ADA).
And, yet, although #BigDisCo has made a concerted effort to increase racial diversity within its spaces, its understood that, with invitations to a seat at the table come the demand that melanated people who are included participate in the ongoing conversations that center white disabled people.
Or say nothing at all.
Nearly any attempts by Black and Brown people to speak about racism in disabled/ity spaces results in disciplinary action (if they are employed in the space), alienation (if they are seeking community), gatekeeping from racially marginalized peers, and demonization.
This was the case when there are no melanated people at the table.
it is the case when DEI has resulted in superficial changes to the racial makeup at the table.
And, as long as #BigDisCo joins the rest of society in upholding and maintaining the oppressive system by working to make it wheelchair accessible, it will remain the case.
For further reading:
Commentaires