Out of the Margins:
Standing at the Intersection of Systemic Racism and Disability


 

If the landscape of human services in the US is comprised of countless silos, it isn’t for the benefit of humans. As a matter of fact, siloing human needs is antithetical to inclusion- and to serving, supporting, and SEEING humans as holistic, intersectional beings.

And, yet, silos persist in the interest of satisfying the cumbersome- to the point of infuriating- requirements of funders, governmental bureaucracies, and other systemic stakeholders.

Speaking of The System, white people, as its default setting, are also the default setting for the multitude of silos that are human services. Research, policy, and the provision of human services are all devised with white people in mind. For instance, when I say, “person with a disability,” one likely thinks of someone who is white, middle class, presents squarely as “male” or “female”, and is apparently disabled- ie someone who’s disability is visible. A white man veteran in a wheelchair, a photogenic white child with Down Syndrome, a white woman Paralympian who is an amputee. These are the images we are presented with when disabled people are discussed by mainstream media and so there is no shame if these are the images one’s brain comes up with.

But what about those who are in need of services in two silos? Three? Four?

What if one of those silos wasn’t designed with them in mind?

What if NONE of them were?

Now, my colleagues in the disability silo tend to get pretty sensitive when I ask these questions and, invariably, someone will push back and say something like “All disabilities matter so your questions aren’t valid.” 

To which I typically reply:

“And what services and supports does your agency offer Black people who’ve acquired disabilities as the result of systemic racism, which can include disparities in access to medical care, exposure to toxins as a result of being redlined into environmentally degraded area, experiencing police violence, experiencing hate crimes, experiencing victimization, in general?”

Certainly, disability can be genetic- photogenic white kids with Down Syndrome, for instance.

Disability can also be epigenetic- the experience of disability for racially marginalized people in the US is fraught with historical implications: enslavement, banishment from indigenous lands, immigration compelled by the US’s political power plays in one’s homeland.

Don’t get me wrong- Black and Brown people experience genetic disabilities like Down Syndrome, autism, etc. Like white people, Black and Brown people can acquire disabilities via car accidents, head injuries, combat wounds, etc, too.

Unlike white disabled people, however, the disability experience for racially marginalization people is compounded with victimization- situational and systemic- that stems from being racially marginalized.

Some readers probably feel like they might benefit from a case study right now to solidify what I’m talking about, so consider the following:

A young girl who, by the age of three, is still not verbalizing except to repeat phrases articulated by others, a girl who rocks back and forth for hours a day and has been labeled by her mother, a Navy vet, as “retarded”, lives in the “inner city”. One afternoon, she is witness to a drug-related murder that occurs outside of her apartment. The hit was meant for her father, a drug dealer and former Marine. The girl, father, and mother, terrified for their lives, make a midnight run, moving cross country in the hopes that the assailants don’t find them. In their new town, the father, who, historically, has struggled to maintain employment because of his struggles to interact with others without becoming overstimulated and quitting out of frustration, falls back on what he knows: selling drugs. It’s not long before he gets arrested and becomes incarcerated. The girl was witness when her father got arrested- violently- by the police.

The mother, desperate to make rent- and to maintain her expensive pill habit (she takes uppers and downers, depending on how terrorized by voices she is at the time)- begins to prostitute herself out of the family’s one-bedroom apartment. She locks the girl out of the apartment when Johns arrive- because, by age five, the girl is still not verbalizing, her mother continues to assume that she is not competent and, therefore, will not be affected by what goes on around her.

It isn’t long before the teenage boys in the neighborhood pick up on the fact that the girl is spending a lot of unsupervised time sitting outside the door to her apartment.

One day, a group of them come for her. They have candy. They lead her down and out to a clearing near the garbage cans. They take turns assaulting her. A neighbor arrives as the boys run off; the neighbor walks the girl to her apartment and bangs on the door. She explains what happened to the girl to the mother and leaves. The mother slaps the girl. “What happened to you is your fault, not mine, you little whore,” she says to the girl.

A few days later, the girl is locked out and sitting outside her door again. A police officer arrives. He is friendly to the girl and the girl thinks that he might help her. He looks concerned- “Where is your mommy?” he asks as he begins to bang on the door. The mother answers, wearing a kimono. She smiles and cocks her head to the side as she looks at the officer. He smiles back. “Officer, I gave her a key to teach her responsibility and she lost it yet again. So sorry to trouble you, sir,” she coos.

“No problem at all, ma’am,” the officer said as he looks down at the girl. “Maybe you should put your key on a shoestring and wear it around your neck!”

The girl looks down, knowing there will be hell to pay when the officer leaves.

A few weeks later, the mother moves out, leaving the girl behind.

Five days after that, the neighbor calls child protective services.

The girl becomes a ward of the state of California.

She is six years old.

My name is Reyma McCoy Hyten and, in case you haven’t figured it out yet, this is me we’re talking about here.

This is 1986.

Given how the police treated him, you probably picked up on the fact that my father is Black.

And, given how the officer treated her, you probably picked up on the fact that my mother was white.

Did you catch the clues about their respective disability statuses? My father was never formally diagnosed as autistic, but he is.

My mother experienced schizophrenia, but spent the majority of her life choosing to self-medicate.

As for me: I was considered a “special needs” foster child because of the behaviors I displayed, as well as my extreme reticence to talk, even by age six. An insightful caseworker had me tested for autism and, in 1986, I was formally diagnosed- this was unusual for the time, given the fact that, at this time, it was thought that only 1 in every 1,500 children were autistic and that, by and large they were white and boys.

Anyhow, in 1989, my mother resurfaced and regained custody of me.

And, by 1992, it had, once again, become apparent to neighbors that things were precarious at my house. One neighbor, Ruby, had begun inviting me to her home for meals. Occasionally, she’d slip me a five-dollar bill. She and her husband, James, were about ten years older than my mother, their house was clean and orderly, and they, most importantly, appeared to be very stable and very friendly to me.

After about nine months of knowing Ruby and James, my mother forced me to take a large number of her pills because, as she told me, she found me to be a “mistake”. After begging her for several hours to take me to the ER, she did- but only if I agreed to tell them that I’d chosen to take her pills.

I was given an emetic and sent home, no questions asked.

Ruby came to visit me- she said, “We all know what happened. If you want, you can come stay with me and James and get away from this.”

Two weeks later, I’d moved all of my things into Ruby and James’ house.

And it wasn’t long until Ruby started assigning me chores- chores that took up all of my time outside of school. Including Saturdays. The only day I had off was Sunday, which was reserved by Ruby for church, which included morning and evening services.

Ruby had my SSI checks signed over to her.

I was responsible for making all of my own purchases, including clothing and toiletries. Ruby would “give” me twenty dollars a month.

My mother died in 1995 and my monthly check doubled because of the survivor’s benefits. Ruby kept it all- and, by this time, was “loaning” me out to her friends and family as a babysitter and a housekeeper.

I disclosed all of this to my high school guidance counselor who, as a mandated reporter, called child protective services. A worker visited Ruby’s home- I came home to find them laughing in the living room. The worker and Ruby knew each other. As a punishment for reporting Ruby, Ruby had my then-waist length hair chopped off around my ears. “If you tell then my friends at CPS- and I know everyone at CPS- will pick you up and put you in a foster home. And you know what happens to teenage girls in foster homes...”

This went on for four years, until a kind woman at church, under the guise of offering me extra Bible studies, began picking me up to teach me how to drive. After I got my license, I got a job and bought a car.

After Ruby sat me down in front of her family and demanded my paychecks, I rented a room and moved out.

I was a senior in high school. It was 1997.

And I didn’t have the language for what had happened to me back then- no one did, really- but I’d been trafficked for labor and benefits theft.

This is a story of disability and victimization.

And, at no point in the story I’ve shared would a ramp, railing, or accessibility regulation have offered me- or my parents, for that matter- any kind of assistance.

Don’t get me wrong: the Americans with Disabilities Act (ADA) has been transformative in many ways for our society- I can tell you that, when I was pregnant several years ago, I certainly appreciated the availability of ramps in public spaces.

Any entity should maintain compliance with the ADA, the Rehabilitation Act, and any other legislation regarding accessibility for people with disabilities that they are beholden to.

But the fact remains that compliance with the ADA alone will not ensure that human services and supports reach the disabled people they need to reach- this includes actual disability service providers, too: the dirty secret of the disability community is that, because of the prioritization of people with apparent disabilities- who are white and middle class- the disability community is failing its most marginalized supposed members: Black and Brown disabled people.

You think that it would behoove the largest marginalized “community” on the planet, the demographic that anyone can become a member of at any time, the disabled community, that it is able to meet incoming members with doors wide open- not just for the sake of accommodating wheelchairs and walkers, but a person’s race, as well.

I got into disability services as a profession straight out of high school seemingly fully cognizant of the service gaps- or outright absences- many disabled people experience as they attempt to engage with human services and full of desire to bridge them. I’ve worked direct, assisted physically disabled people in their activities of daily living, assisted disabled people of all sorts in finding and maintaining employment. I’ve case managed, coordinated programs, managed staff, led organizations, provided training and technical assistance- all in the hope of cajoling the disability community to prioritize the lives of disabled people subsisting in the margins. It was this drive that propelled me into the Commissioner for the US Administration on Disabilities role as a member of the Biden Administration in 2021.

It's this drive that compels me to write this now.

In spite of the disabled community’s insistence that disability is as definitive as physical accessibility (and that anything outside of that be deemed “not disabled enough” and/or “not disabled in the right way”), I will not be definitive now because, despite the deepest wishes of funders, accreditation entities, governmental bureaucracies, and, of course, the disabled community itself, there is nothing definitive about the disability experience. According to the CDC, 1 out of 4 people in the US experiences disability- the only thing “definitive” about the disability experience is the range of the experiences.

And, so, what if individual members of society considered widening their understanding of disability from whatever it currently is, which, if one conjured an image would probably be of a white, middle class, apparently disabled child, a disabled child who, although vulnerable to marginalization, not in the same way  or to the same degree as, for instance, say a Black adolescent girl with an undiagnosed intellectual disability who gets escorted off of the premises of her high school by police for being “belligerent”.

Is she “belligerent” for the hell of it or is she upset because she isn’t being heard (yet again)?

How many “workers” has she encountered who, because of implicit biases about disability layered upon implicit biases about Black people layered upon implicit biases about Black women layered upon implicit biases about Black girls, layered upon implicit biases about what a victim who deserves empathy even looks like in our society, have failed to SEE her?

Statistically speaking, racially marginalized- Black and Brown children with disabilities, are underdiagnosed, overdiagnosed, incorrectly diagnosed, diagnosed later, or wholly undiagnosed in stark contrast with their white peers, leaving them vulnerable to pathologization and a one-way ticket onto the preschool to prison pipeline.

According to the Department of Justice (DoJ), 40% of incarcerated people- or people who will become incarcerated- are disabled.

According to the DoJ, 40% of incarcerated people- or people who will become incarcerated- are Black.

Connect the dots.

See the picture.

Disabled children are 3.4 times more likely to experience victimization than non-disabled children.

Black children- girls, in particular- comprise 50% of juvenile trafficking victims in the US.

Connect the dots.

SEE the picture.

To be Black or Brown and disabled simultaneously- particularly if one is “not disabled enough” or experiences the “wrong” kind of disability- is to be misunderstood, pathologized, and victimized simultaneously.

And let’s not forget that trauma, in and of itself, causes disabilities, albeit the “wrong” kinds. Like PTSD, yes, but, according to First Five California, trauma is one of the top five causes of developmental disabilities in children.

Again, comply with the ADA, but know that no ramp, no railing, and no physical accessibility regulation is going to meet the needs these disabilities present.

And that’s why I’ve shifted from pleading with the echo chamber that is the disabled community to make space for Black and Brown disabled people and am turning my focus from to mainstream society because there is no point in pleading with the microcosm to include me in its advocacy efforts as they pertain to the mainstream when I- and other Black and Brown folks- can save our energy, walk away from the middleman, and just speak to mainstream society ourselves.

There is no historical precedent for people with power dismantling systems of oppression in the interest of ensuring inclusivity of people without power- I have no confidence that that will happen any time soon. As a result, marginalized communities have themselves become microcosms of the oppressive system at-large.

As a result, more, not less. people will experience marginalization- including the marginalization that comes from not being included by communities that theoretically exist to do just that: include YOU.

And, so, how do Black and Brown disabled folks move out of the margins?

On Monday, October 3rd, join me at www.outofthemargins.online to explore this question- and more.

Recurring images at the top are of the Out of the Margins logo, which features a red four-sided block with the words "OUT OF THE MARGINS" on top of a black one with the words "Centering the disabled lives of Black and Brown folks".