By Anita Cameron
I’ve been involved in disability activism for decades, starting out in ADAPT (American Disabled for Attendant Programs Today). I love the ideals that we stood for. And it was the first place in social justice where I found a home, where I wasn’t an oddball, and where, ultimately, I was listened to, because I did, after some years, find myself in a position of leadership. But over the decades I’ve seen that in the disability rights movement, the contributions of myself and other Black disabled activists have been ignored or forgotten.
For instance we did an action in 2002 in Colorado where there were going to be cuts across the board in Medicaid reimbursement rates to home health agencies, meaning a lot of them were going to have to close and the people they served would end up back in institutions. Our chapter of ADAPT figured something drastic had to be done.
I pushed them to do a vigil – day in, day out, in front of the Human Services building where Karen Reinertson, Director of Health Care Policy and Finance (HCPF), who had the power to rescind the cuts, had her office. After 14 days and nights, we got a huge victory – the cuts were rescinded! That victory had far reaching effects that lasted throughout the years. The vigil was so successful that I was asked to write a tutorial on how to do a vigil. It also led to the Free Our People March in September of 2003, where we wheeled 144 miles from Philadelphia to Washington, DC to bring awareness of disability rights legislation – it took us two weeks!
I say all that to say that when ADAPT history is told, that contribution is left out. As is the contribution of Blacks in particular.
I mean, so many Black folks participated in getting the Americans with Disabilities Act (ADA) passed and were there with me on the Capitol Crawl or were involved in the 504 sit-ins. So that kind of thing – we can’t leave out the voices of those Black folks who were out there in those streets. We had Black ADAPTers die on actions. Reverend Willie Smith from Chicago died during the Vegas action of 1994, and Mark Jacobs and Leonard Roscoe died during another action a few years later. And so as more and more folks are joining the ancestors I think it’s imperative that the story is out there, that the young folks know the about people like Revered Willie Smith, Leonard Roscoe, Reverend Calvin Peterson, Bernard Baker, Shayla Jackson, Jerry Eubanks, Ernest Taylor (ET), Shahada Muhammad, Lee Jackson, Gary Isaacs, Latonya Reeves, Bobby Coward, Sheila Dean, Kate Gainer, Marva Ways, Art Humphries, Gwen Jackson, and so many others.
How many people know the story of Major Owens? He was a Black congressman from New York, who was critical in getting the ADA passed in Congress. It was his proudest achievement, yet, he didn’t even get the honors in Congress that he deserved. So if he, a member of Congress didn’t get his due, what of us Black activists who blocked those buses, who shut down Greyhound stations, who shut down the Department of Transportation, who chained ourselves to buses, who pushed for the ADA, who did that Capitol Crawl, who was arrested in the rotunda? What of their stories? Who will tell them? Who will speak their names?
“If a member of Congress didn’t even get his due, what about Black activists?“
Often, in organizations like ADAPT, Blacks were and are still tokenized. Once or twice, over decades, my ideas were heard and acted on, but as far as whose voices get heard and the future of ADAPT – where we’re going and whatnot – certainly in the early days, Blacks were loved, but not heard. I think ADAPT, like most disability organizations, has to face its own structural, institutional and systemic racism. Until ADAPT really comes to grips with that, injustice will still happen and when the history is told, the Black folks will still be left out.
When I first started at ADAPT, there wasn’t even anyone there who was autistic that I knew of. And our voices – the voices of Black folks – were not included in decisions to be made about the future of ADAPT or even sometimes the organization of it. Usually, if you were someone of color and you got listened to, when it all came down to it, it was forgotten who pushed forward the idea. We’ve had recently more ADAPTers who are neurodivergent come into leadership but specifically autistic folks, pretty few – and myself, but I’m not really seen as an autistic leader in ADAPT. That’s just something they keep really forgetting.
I think I just wasn’t seen as autistic. I’ve only really come about it a few years ago. And it was never because I never wanted to be a part of the autistic community – I just couldn’t find an autistic community to settle down in. I think now certainly other Black autistic folks include me in that number. And so these days I am acknowledged.
But if you go back and you ask folks about my accomplishments in ADAPT, no one would know. The vigil – called the Battle of HCPF – what happened, how it get to that point, who organized that, my name won’t be mentioned. It’s forgotten. I want it to be known that that successful vigil would not have happened but for the actions of a Black autistic woman, who was a chapter leader in that chapter.
I think sometimes people might even wonder where I come from – I’m not famous! I’m not like Ari Ne’eman or even like Lydia Brown or some of these other folks who have been out there in the trenches working specifically for the civil and human rights of autistic people. I certainly will not be seen as one of the pioneers in the Black autistic space. In disability spaces, I’m just that voice crying out in the wilderness saying hey we Black folks are here too. So for me I see it from the space as somebody who’s autistic, who’s trying.
“It’s hard to be Black in the disability world – to be authentically Black, and to talk about the issues that affect us.”
It’s hard to be Black in the disability world – to be authentically Black, and to talk about the issues that affect us, especially in the disability rights movement. When I would bring up racial things, I’d get slapped down, shut down. I actually got the nickname “angry black woman”. But in 2014, when Michael Brown was murdered, I just said no. No more. I stopped being a disability rights activist and began being a Black disability rights activist.
If I go out my house, and I don’t have mobility equipment like my rollator or my wheelchair and you don’t notice me trying to look very closely at objects, or don’t see me stimming (which I try hard not to do publicly, because as a Black person, that can get you killed – think Elijah McClain) you’re not going to know I’m disabled. You might notice after a while but it’s not the first thing you see.
Because of my voice and its tenor and to an extent my locs, I get misgendered quite often. So people approach me as if I’m a man, a stereotypical man, so it’s pretty dangerous. It’s pretty rough to be a Black guy out there. And that’s what people see, and it’s about what’s in their imagination when you see a Black guy.
Same with being a lesbian – no one’s gonna know. They’re not gonna sometimes even know I’m a woman.
But they know I’m Black. And treat me accordingly.
I could no longer separate that. So I stopped trying to. And it was about that time that I got that moniker “angry black woman”.
In 2018 I started to voice that I saw that we really need to address the structural racism in ADAPT and by extension in the disability community and disability movement
We really needed to address it, we needed to be a beacon. We needed to lead that.
So, I pushed for an Intersectional Justice workgroup to not only address issues of structural racism but to bring ADAPT into the 21st century. We’re so insular, we only cared about disability issues and that’s it. We have ADAPTers who are immigrants, who are undocumented, who are indigenous, many and plenty ADAPTers who are not only LGBTQ but specifically trans, and we obviously have Black ADAPTers who have faced the police. So I wanted to make ADAPT more aware of those issues. Our first issue and statement was against homophobia and transphobia because we had one of our leadership experience that in their chapter.
Then we started tackling the issue about race and it got ugly. It got real ugly. Horrible things were said, unspeakable things were said, and I saw the true colors. It became clear that ADAPT was not ready to face it.
And we talk about one person’s actions or behavior, but it’s more than that. There needs to be a reckoning with the structural racism going on. There are some things, performative things getting done, but there needs to be a plan, a written plan, to be followed, and I don’t see that. I hope that that happens.
Most of the white led disability organizations – a lot of them have made statements on this or that, on George Floyd or whatever – but statements are performative. Showing up at Black Lives Matter marches is performative. When your organization is continuing to mistreat or betray your staff of color, or your Black staff, all that performance stuff means absolutely nothing!
But I think all of those organizations who are writing these statements need to have a straight up plan on how they will address structural racism in their organization – how are they going to recruit qualified Black folks? What’s the makeup of their Board of Directors? Are they including folks who are Black, Indigenous, and People of Color (BIPOC) – do you have us on your boards? And if you do, what assignments do you have them do? Are we there just for window dressing or are we being allowed to fully participate? There are organizations that may have Black folks working for them or on their boards but they get the menial stuff – they get the low level, entry stuff, or if they’re on the board they’re not really serving on committees or if they are they’re doing all the work and not getting any of the credit.
There are some organizations that are starting to make progress. The National Council on Independent Living (NCIL) has been having serious discussions on this, Disability Rights Education & Defense Fund (DREDF) is working on a plan, Not Dead Yet, where I work, has an intersectionality committee. The Alliance for Citizen Directed Supports, on whose Board I serve, at my suggestion, created an Intersectionality and Inclusion Committee. The organizations that are part of the National Disability Leadership Alliance, each of those organizations have or are in the process of writing a diversity and inclusion statement. That’s fine and well but I think that there has to be outright planning, and I think some of these organizations are certainly doing that.
As far as disability organizations who support police training, I have two words for them. Paul. Childs. Paul Childs was an autistic young man in Denver who was murdered by the police. The police who murdered him not only knew him, but they had training – he was known to them. They were called because Paul was going through a crisis and the police were called, and it did not end well, he died- but these were cops who were trained to deal with autistic people.
Cops who were trained still kill. Especially if you’re Black. Especially if you’re a Black guy, or someone who presents as male. And I don’t understand why there are some autistic groups who are all for that. Because it just doesn’t work. Too many cops who are trained to kill.
“Mainstream autistic spaces are not safe spaces for Black and Indigenous people.“
Is the autistic community more or less racist than other communities? When it comes down to it, we’re just as bad. It doesn’t matter that oddly enough, the percentage of autistic trans folks is above the national average, the percentage of autistic queer folks is above the national average, and so it’s the fact that being marginalized is not a guarantee that you are going to understand other marginalized communities. The disability community, the autism community, any breakdown of the disability community, they’re just a microcosm of our country. Each group is almost representative of the stuff that can be not so good about our country. We have folks in the community who don’t understand or who are willfully ignorant, racist, homophobic, so it doesn’t surprise me. Being autistic doesn’t give us a pass. It doesn’t make some of us any more empathetic than we were already going to be. It doesn’t mean that we’re going to be any more woke than we already are.
Mainstream autistic spaces are not safe spaces for Black and Indigenous people. There are microaggressions, sometimes out and out racism, they say and or do racist things, hold racist thoughts, there are all lives matter people, support the cops folks, and that’s not to say that I won’t work with white autistic folks – not to say that at all. I just don’t want to be in those spaces.
Am I hopeful? Yes. I have hope. Whether the disability community is dragged kicking and screaming into the 21st century or it comes of its own volition, it’s going to come. At some point, we’re going to – I have to hold hope. If I don’t have hope, there’s no need, there’s no reason for me to be going hard in these streets, in these Zoom calls or whatever.
“I’ve got to have hope. I can’t afford to not have hope. I think we’re going to have some rough times but we’re going to come out the other side better.“
I’ve got to have hope. I can’t afford to not have hope. I see changes, people being more open, vocal, apt to listen – so with that, I have to be. I see a lot of folks falling into despair, Alice Wong did a book called Hope and Resistance and I wrote a piece for that book. When Trump was elected I fell into a despair for maybe a couple of days, and then decided that I had to get up, I couldn’t afford to lose hope. And that’s kind of how I feel about it now. We’re going to go through some rough times racially here. I know beyond a shadow of a doubt, we’re going to have a situation worse than George Floyd happen to someone Black, unless it’s already happened and we just don’t know about it, as we in Rochester, New York, recently learned about Daniel Prude. I think we’re going to have some rough times but we’re going to come out the other side better.
As we go through the rough times racially and in this country, in the autism and disability community it will radicalize them, and they will see and they will have no choice but to change, I think.
I think about Ella’s Song by Sweet Honey in the Rock: We who believe in freedom cannot rest.
That line says it – there is no choice. If you believe in freedom you CANNOT rest. It’s not you WILL not rest.
You have no choice but to keep on.
Keep helping people to get woke.
“I think about Ella’s Song: ‘We who believe in freedom cannot rest.’ We have no choice but to keep on.“
Sometimes I hear about people who like to go hard and they say, ‘oh if you’re not getting out in these streets you’re not an activist.’ But you know I lift up all forms of activist. If you can’t get out of your house for whatever reason, bed borne, disability – if the only way you can do activism is online and through change.org petitions, these call to actions where you contact your representatives, even hacktivism, and you do that, if that’s the only way you can do it – I lift you up. If you are able to get out here in these streets – I certainly was – there’s a form of privilege to be able to do that. If you want to support from behind, make a donation, volunteer your time – there’s all different kinds of activism and I lift them all up. If you can’t or won’t get out there it’s not on me to judge, you’re doing activism whatever way you can. And I lift that up. Hey, you’re doing something! You’re not just sitting up on your butt and saying oh well! I lift you up.
I lift you all up.
Go Back to Issue 18 Home
Read more articles on the Black autistic experience beyond the hashtags in Issue 18 of Zoom Autism Magazine.
- Why are Black Disabled Activists Being Ignored or Forgotten? by Anita Cameron
- Autistic While Black and the Case of Matthew Rushin – #FreeMatthewRushin
- We Believe…In the Right to Exist by Elizabeth Roy
- Why the Social Model Will Not Save Us and “Disability Rights” Aren’t Intersectional by Tiffany Hammond
- What Does it Mean to Feel Safe? Intro by Rose Sutton
In Every Issue
- Editor Letter – Black Autistic Lives Matter: Beyond the Hashtags by Elizabeth Roy
- Cummings and Goings: Working Together to Fix the System by Conner Cummings
- 5 Must-Read Books by Black Autistic Authors by Adriana White
- THE VIEW FROM HERE: “I am Just Going to Be Me” by Jasmine Sutton with an update from Daniel Derrico
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- Archived issues on the Zoom Home Page