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A Conversation with Reyma McCoy McDeid, Commissioner of the Administration on Disabilities February 26, 2021 ACL’s Office of External Affairs talked with Reyma in a Zoom call this week. This post shares some of the highlights from our conversation. Tell us a little about yourself. What unique perspectives do you bring to your new role? First, let me say I am thrilled to be the commissioner of the Administration on Disabilities at the Administration for Community Living. I think a few things about my life and professional experiences will really help inform my work at ACL. As a Black woman with a disability, born to parents who themselves experienced significant disability, I have been an advocate for civil rights my entire life. I have been the person on the other side of the work we do, and I have been a provider of services and supports for people with disabilities. Prior to joining ACL, I was the executive director for the Central Iowa Center for Independent Living, which is one of six Centers for Independent Living in Iowa, and one of more than 350 in the United States. The Centers for Independent Living are led – at both the staff and board levels -- primarily by individuals who experience disability. In addition to providing a range of services that help people with disabilities live the lives they want to live, the way they want to live them, the CILS are the foundation of the independent living movement. Leaders and staff at CILs are generally very involved in advocacy at the local, state and national level, and there is a great deal of coordination and collaboration between CILs to improve opportunities for people with disabilities across the country. So my role afforded me a wonderful opportunity to participate in, and eventually lead, conversations about the intersection of disability, diversity and intersectionality in our work to advance independent living. Those conversations included what's going well, as far as inclusivity in the independent living movement and disability advocacy in general, what we can do better, with regard to being more inclusive of racially marginalized people, and what the barriers are to achieving that goal.. In order to ensure that people with disabilities can participate fully in our communities and in our society, we have to also ensure that everybody in the United States who experiences disability is able to participate fully in services, no matter their skin color or ethnicity. It really has become an advocacy mission within an advocacy mission for me. So I also bring that emphasis to my current role at ACL. Why is it important to consider the intersection of race and disability? What is that intersection? People with disabilities are more likely to experience things like homelessness, incarceration, and unemployment than people without disabilities, and people of color are more likely than their White peers to experience those things. If we do the math and we braid these statistics together, what we see is a rather sobering picture that shows that individuals that are multiply marginalized are at even greater risk. They live at the fringes of society simply because they are who they are and society has not been built to accommodate—much less include – these populations. And this is true throughout life. Brown and Black disabled children, in comparison to their White peers, are misdiagnosed and under-diagnosed, over-diagnosed, undiagnosed, and diagnosed later. What that means is that there's a profound misunderstanding of the disability experience for racially marginalized people in the United States. And that leads to a domino effect of consequences. Being a Brown or Black child can be a precursor, or a facilitating factor to participation in the preschool-to-prison pipeline. Because if instructors and other support staff in the public school setting do not have an understanding of the disability experience for Brown and Black children, it logically follows that the behaviors being exhibited by these children are being misunderstood to the point of being pathologized, in comparison to those of White children with disabilities. In my experience as a CIL director providing support in meetings for racially marginalized children in special education programs, I observed that behaviors and mannerisms of racially marginalized children were definitely perceived very differently from those of White disabled children. There is a lot of implicit bias at play there. There’s a lack of cultural competence with regards to the disability experience for racially marginalized children. As those children become adults, that misunderstanding continues and leads to the reality that a disproportionate number of racially marginalized disabled adults interface with law enforcement officers, become a part of the judicial system and experience incarceration at rates that that far exceed their White counterparts. That in turn means that racially marginalized disabled adults whose primary interface with services and supports have been provided in incarcerated settings. They have had little access to services and supports outside of those settings. So we now have this fantastic opportunity, because racial equity is one of the four priorities of the Biden Administration, to begin a conversation with regards to course correction, so that our efforts are reaching everybody. Think about what happens when policy is drafted. Immediately you've got advocates coming from every direction who typically have the same refrain: we don't see our community reflected in this policy. After the policy has already been drafted—sometimes—attempts are made to go in and rework that policy so that it's inclusive of a particular community. But then other communities come in and don't see themselves in this policy, either. Depending on whether or not there's an imperative to be inclusive of that particular community, there might be more reworking of the draft policy. What if, instead, we committed to ensuring that as we draft policies we are doing so with an intersectional lens so that there's no need to go in after the fact to make them inclusive? That, for me, is the opportunity to address the disparities that racially marginalized people experience with regard to disability advocacy and policy. And I think this is really an opportunity for ACL. I this we can be the way-showers for building a bridge between disability, racial marginalization, and other manifestations of marginalization, which is necessary if we’re going to create a inclusion and equity across all populations. How has the COVID-19 pandemic highlighted the disparities in access to healthcare and services by people with disabilities? Have there been particular challenges for people with disabilities who also are members of other minority populations? Covid-19 in many ways has shined a floodlight on disparity in the United States. Let's focus on the disparities faced by racially marginalized people, and how that has interfaced with the pandemic. Brown and Black people are being impacted by Covid-19 at rates that that boggle the mind, far exceeding the rates that White Americans face. In Kansas, for instance, Black people are contracting Covid-19 at seven times the rate of White people. No matter what the racial demographics are, if you factor in disability into the equation you've got individuals that are doubly susceptible to contracting the virus. The Covid-19 contracting rates for the disability community are also disproportionately higher than the rates for the general population. The data is sparse, which brings up another challenge that really needs to be addressed. We have definitely become more aware, thanks to the pandemic, of the disparity in data specific to racially marginalized disabled people. That presents challenges as far as having conversations about this experience, especially when we are advocating with people who are data-driven. The lack of data itself can create a barrier to engaging in this important conversation and improving the reality. When we’re talking about Covid-19 in disability spaces we also need to be mindful of caregivers that are providing services and supports. Caregivers are being impacted by the pandemic, and six out of ten caregivers in this country are racially marginalized people. It’s not overstating to say that COVID-19 really illustrates the intersection of race and disability in a life-and-death was. This is a particularly timely conversation, as we celebrate Black History Month. Can you talk about some of the Black leaders who have inspired you? I appreciate the opportunity to have this conversation. And I feel blessed to have known wonderful people. Deidre Davis Butler was instrumental in the independent living movement at its inception and was instrumental in the creation of the diversity caucus for the National Council on Independent Living. I believe she was the first Black woman to serve on the board of NCIL in an executive capacity. She was truly a powerhouse and a trusted mentor and resource. This would not be a complete conversation without mentioning Leroy Moore who is the founder of Krip Hop Nation and is probably one of the strongest voices out there with regards to racially marginalized disabled Black people. In particular, his uncompromising vision holds all of us who are Black and disabled accountable at all times. I’ll admit that sometimes his razor sharp perception of what's right and wrong and what's in the best interest of all of us versus what's just a self-interest is just unapologetic. He is a genuinely focusing agent as far as ensuring that what we're doing is truly in the best interest of of everybody. Stacey Park Milbern was a Korean-American trans-racial adoptee. She was very active in the independent living movement during her early days in activism, and although she transitioned out of independent living and shifted her focus more on mutual aid in the San Francisco Bay Area, her approach and her presence were incredibly impactful to me and many other young activists. Her commitment to integrity at all times has really stayed with me. Stacy really showed the world that the ends are the means, and that compromising ideals in the interest of short-term gains and getting things done is not always in the best interest of the disability community. And as a Black disabled woman, I look forward to ensuring that by the time I step away from this role we're having conversations about Black disabled leaders, and other racially marginalized leaders, in months that aren't necessarily specific to a particular race or ethnicity. These are conversations that we should be having at all times, just like those of us who are members of the disability community don't want to be relegated to a particular day or week or month by mainstream society. What message would you give to a young person of color with a disability as they navigate toward adulthood? It's absolutely imperative to find your people. Young folks today are at a decided advantage thanks to social media. Reaching out to find your community—even if that community is virtual—is absolutely imperative. I have observed how young folks who feel very anomalous in in their respective communities, once they find like-minded individuals on social media kind of bloom and come into their own and that's wonderful. Holding older members of the disability community accountable is also important. The reality is that a lot of us who are over the age of 40 came of age in different times. Either informally or formally, we made agreements that made sense back then but don't make sense today and so there can be this perceived gap between younger disabled folks and older disabled folks, especially those of us that are racially marginalized. Younger folks can look at those of us who are a bit older and have a lot of questions or frustrations about why we made the decisions that we made. Those questions are valid. They should be asked! Because as those questions are being asked and answered honestly, hopefully we can have conversations about what we would have done today. And we can talk about what they as young people can do today. There are powerful lessons that can be learned from older folks with regards to how to do things, and how not to do things. We in in many different respects we are being presented with unprecedented opportunities to really attain inclusivity and intersectionality. Some of us who are over the age of 40 might feel a lot of fear about that because we're looking at today from the vantage point of yesterday and so sometimes we need a little bit of support with regards to understanding that what worked yesterday doesn't necessarily work today, or shouldn't have to work today. Ideally, I would love for young racially marginalized disabled people to not feel like they have to make compromises or assimilate or be more sanitized versions of themselves in order to be deemed acceptable in disability spaces or in mainstream society. Reminding those of us who are older that part of being mentors and way-showers is knowing when to pass the mic but also knowing when to advocate for younger folks and ensure that that they are safe is important as well.