For Black History Month in 2022, AWN is highlighting the voices of Black autistic community members, advocates, and leaders within AWN and some of our partners and friends. We present a roundtable with Alex Toliver, Tony Alexander, Morénike Giwa Onaiwu, Oluwatobi Maeyen Odugunwa, and Jessica Horvath Williams.
AWN: Can you describe your work with AWN and as related to disability in general?
Alex: I am very proud to have earned a position as a Policy Intern for AWN. I would like to continue policy work in future efforts as an advocate. Another highlight of my life is being one of the many cofounders of the Harriet Tubman Collective. HTC is an awesome collective of Black, intersectional, disabled activists. I am currently writing a children’s book entitled, “Everyday Black: Our Disabled Lives.” This book is an informative introduction as well as a heartfelt tribute to the lives and experiences of Black disabled people.
Tony: I am currently contracted as the Policy Director for AWN’s partnering organization, the Autistic People of Color Fund, in which I advocate for accessible, supportive, and inclusive policies, programs, and spaces for people with disabilities. In my role, I frequently interact with AWN staff, including participating in some of the same coalitional meetings as AWN staff. I’ve also recently had the privilege of being on an AWN panel in which I discussed the intersection of food justice and disability justice.
Morénike: I have been involved with AWN for several years; in a sense, I have “grown up” with AWN. I discovered AWN shortly after my younger two children and I were diagnosed as autistic, and was grateful for a supportive community that didn’t erase me and my experiences. I later became involved as a social media volunteer for AWN and was eventually fortunate enough to obtain approval to utilize AWN as my graduate school internship site. Through the years, I’ve held multiple roles with AWN, including executive, advisory, and anthology co-editor positions and a stint as AWN’s Grant Selection representative to the Autistic People of Color Fund. I am currently AWN’s Equity, Justice, and Representation Chair. Outside of AWN, I am involved in various other disability justice initiatives including several years of HIV advocacy, writing, and research.
Oluwatobi: My connection to AWN is through my work at the Autistic People of Color Fund, a partner, mutual aid organization. I began an internship with the Fund through the Solidarity Is program hosted by the Building Movement Project. The program consisted of youth empowerment trainings by BMP staff and a position at one of many nonprofits committed to liberation and justice work. I started off managing the Fund’s social media, but when the internship was over, I stayed on with the Autistic People of Color Fund and transitioned to working an introductory administrative role.
Jessica: I’m the VP of AWN’s Executive Board. I’m also a postdoctoral fellow at the University of Minnesota, and I research the connection between white ideal womanhood and the emergence of ableism in the nineteenth-century United States.
AWN: What would racial justice in the disability community look like?
Alex: A huge part of my work as an advocate is to read literature that can inspire my efforts, invoke more thoughts about liberation, and decolonize my mind. A work that I have had the blessing of encountering is the Combahee River Collective Statement. This statement helped shape some of my thoughts on liberation and how one can pursue it. The Combahee River Collective is an awe-inspiring group of Black Women that began in 1974. In the prelude to their statement, they write, “As Black women, we see Black feminism as the logical political movement to combat the manifold and simultaneous oppressions that all women of color face.” Taking that statement into account, I see not only racial but intersectional justice as the logical means to combat the many oppressions that we marginalized folks experience within the disability communities.
Tony: Racism is so deeply entrenched within our society that is inextricably linked to the various other forms of oppression and hardships that individuals and communities of color undergo on a daily basis. The disability community simply can no longer ignore the link between racism and ableism, or the need to address racial justice and disability justice simultaneously. By ignoring racism, the disability community risks advocating for an unattainable goal. The late Civil Rights Movement leader—a Black woman with disabilities, herself—Fannie Lou Hamer once famously stated that “nobody’s free until everybody’s free.” As long as people of color with disabilities continue to experience being overlooked, devalued, and even attacked (not just by ableist individuals and policies, but by white people with disabilities and other so-called disability justice advocates), the very inclusivity and accessibility that the disability community seeks to obtain and secure, is in vain.
Racial justice within the disability community first entails a general consensus within the community about the longstanding, racist history and legacy that continues to disproportionately, negatively impact people of color with disabilities. Before any future progress can be made to improve the quality of life for people of color, people with disabilities, and especially people of color with disabilities, there must be an understanding about how and why disabled POC face even greater vulnerabilities within the disability community (and how their liberation is tied to the liberation of all people with disabilities). Once there has been such a reckoning within the disability community, the community as a whole must incorporate anti-racist practices and trainings into its frameworks. Such practices and trainings shall include systems of transparency and accountability so as to ensure that the community continually moves in a direction of progress regarding issues of race and racism. The community should also make genuine efforts to invite and elevate people of color with disabilities within coalitional and leadership spaces that disabled people of color are either not currently a part of or do not have adequate representation; such onboarding processes should eliminate or at least review any means-testing tools that historically serve to gatekeep the very communities they are seeking to now welcome. Racial justice is achieved within the disability community once that disparities that disabled POC experience are eliminated and once disabled POC feel just as supported, included, and ultimately liberated as their white counterparts.
Morénike: The responses that have been shared thus far address this so profoundly. As to not be duplicative, rather than elaborate on what racial justice in our community would look like, I’m going to juxtapose this with a reflection of the way things actually are right now, by quoting something I wrote some time ago about how the pervasive cost of Whiteness leaves little room for racial justice:
“The everyday racism that PoC contend with daily is what causes the most damage. It erodes away our self-worth, at the very core of our being—and you aren’t here to back us up when that happens, even though the disability community is a marginalized group who knows the devastation of being discriminated against all too well.
“You watch from the sidelines as we get ignited from the slow burn of gaslighting and covert racism. Maybe you don’t join in the bonfire, but you certainly aren’t dousing the flames, either. So you’re there, watching. Not taking action and complicit in our pain. And I have no reason to believe that it will end any time soon, for like in nearly everything else, White is the “default” and everything else is merely Other. With Whiteness comes privilege, which equates to power. Power imbalances often fuel oppression, and with oppression comes pain. Equipped with the capacity to scatter broadly as opposed to absorb, the color white retains its appearance by blocking out incoming objects; its most distinct characteristic is its ability to reflect its lack of hue.
“Because Whiteness demands that it must be the sole focus at all times, then naturally White people must also be the sole focus at all times, and anything that does not perpetually center this toxic Whiteness is perceived as a threat.”
Oluwatobi: Racial justice in the disabled community can only happen when disabled people of color get the respect, platforms, and support we deserve. A good starting point for white disabled people is to investigate the overlap between racialization and ableism that needs to be discussed in the disabled community. Not only will that help mend the lack of empathy and care that exists for disabled people of color, it will also help build coalitions across disability and racial organizing groups.
A significant portion of racist and antiblack rhetoric specifically deals with presenting Black people and other people of color as inherently sick or disabled. With whiteness as neutral, the colors of our skin are seen as deformities that can be cured with not going out into the sun or skin lightening processes. Another example is how stereotypes around Black people being unintelligent purposely associate Blackness with intellectual disability, marking both identities as undesirable. It’s frustrating though that many Black people who are neurodivergent or labelled as having an intellectual disability often find it hard to become diagnosed and receive appropriate support.
Antiblackness and ableism can be boiled down to seeing both marginalized peoples as an “other,” and subsequently, inhuman. Examining that common root of both systems of oppression is an easy place for white people to begin to eliminate their racial bias. It’s going to take a lot of work on the part of white disabled people to let go of their need to step on people of color to make them feel more secure in the kyriarchy.
Jessica: This is going to be a pretty abstract answer, but here goes. To me, one of the defining features of whiteness in this country is the belief that the work or effort that you put into a thing or towards a goal should produce that goal. It’s what joins together the most liberal white academic frustrated with the lack of tenure-track jobs (newsflash: the lack of jobs has always been true for black and brown academics—nothing new here) with the folks that stormed the capital. Some people call it fairness, some merit. But if you say the world isn’t fair, everyone nods and says, “Of course not.” But the operating principle of white folks is that it SHOULD and if it isn’t, there’s a problem. Whose responsible for this unfairness, who fingers are pointed at, is largely divided along political lines (-ish), but the motivating belief—that my hard work should largely correlate to the outcome I desire—remains the same. It’s from this that the idea of “working hard” has become sacrosanct—because to many people, hard work is all it SHOULD take. Unfortunately, this belief is so ingrained that even among my most insightful, anti-racist, radical friends and colleagues, they have almost no ways to think outside of the effort-outcome framework. It exists so deeply as a first premise of life, that it’s mostly beyond their perception as a motivating belief.
By and large, the black people I know operate according to a different principle – that the world is a fundamentally unfair place, and that its unfairness requires strategies other than simply working hard in order to survive and thrive and get things that you want. It’s a fundamentally different understanding of the world that I wish was more operative in disability community, especially in the advocacy for disability rights. In short, I wish the life philosophies of BIPOC surviving and thriving were principles that disability community operated by.
When I think about racial justice in disability community, I think about how disability rights will never work the same for black disabled people as white disabled people. We’re not, any time soon, going to get to the place where effort inputed correlates tightly with desired outcome. I’m tired of conversations that ignore this, or put it in only terms of intersectional experience – as if identifying a problem is somehow the same as understanding it (and thus, creating solutions that are apt to the task). When I think about racial justice in disability community, I think about how people can learn to operate on principles drawn from experiences that their subject-position disallows them to see. That are not only alien to them, but that fundamentally violate a core script of whiteness. I think about strategies for justice that originate in black surviving and thriving – and that I think that that change has to be made in our communities before we can make it in the world.
AWN: How can other Black disabled people connect with or learn more about the disability justice movement?
Alex: In general, I encourage all Black disabled people to radicalize by any means that is the most accessible and enjoyable. I would also encourage them to pursue radicalization or engagement with disability justice in a manner that highlights their personal strengths. That not only allows one to realize how powerful they are and how much they matter, but it heightens our work as a community. As my elders would shout, “Power to the people. Power to all people.” Liberation and justice will only be attained when we work together as a collective. Hence, you phrased the question as, “the disability justice movement.” I believe that if each member of the movement contributed in a way that highlights their unique strengths, the movement would be even greater in strength. I hate the common and ableist use of calling disabled folks superheroes, but I see each person shining their strength in a way that is similar to how each Avenger contributes a unique power to the team.
Tony: Knowledge is key. I recently joined a Critical Disability Studies reading group, myself, so that I could have a better foundation in disability justice history and so that I could become a better advocate on these issues. I would encourage other Black, disabled people to do the same; find an online reading group or, perhaps, a group located within your area, or read books and articles on your own that provide an insightful background about the history and evolution of ableism and disability justice within our society. Also, I follow several prominent, Black and disabled social justice advocates on Twitter who I have found are helpful in keeping abreast of the larger, ongoing issues impacting Black and disabled folks as a whole: @Imani_Barbarin, @Keah_Maria, @HabenGirma, @sheabutterfemme, and @VilissaThompson. Lastly, if you have access to the internet, I’d encourage you to seek out groups on Facebook or Meetup that are created by and for disabled, Black folks. For instance, if you’re Black and autistic, there is a Facebook group called “Autistic Black, Brown, Indigenous, Asian, & Mixed-Race People of Color” that could be a safe space to find a shared community among other autistic, Black folks.
Morénike: I agree with all of that. Additionally, I would encourage my Black disabled brothers, sisters, and siblings to give themselves some “grace” and “space” as they learn. So much of this knowledge has been hidden from us; so much pressure has been placed upon one or another aspect of who we are as opposed to all of who we are. Ask questions; make connections; personalize things. Allow yourself to learn, in your own way, at your own pace. Delight in the discovery of the totality of our community.
Oluwatobi: I encourage Black disabled folks to join both community- and activism-focused groups. I’m part of many such groups on Facebook and they have greatly influenced my journey with disability acceptance and self love. It is impossible to commit to disability justice without being part of a community of disabled people. Such groups can also be a place to discuss articles, policy, actions, and theory. I’d also say it’s important to read the writings of disabled people, so theory plus the lived experience the theory is based upon. Learning theory and about other disabled lives has been the easiest way for me to deconstruct my racist and ableist understandings of the world and of myself. Academia gets a well-deserved bad reputation for content one has to slog through, but there are many disabled folks who write in an accessible manner.
Jessica: This is a hard one for me, because there are so many things – in history, in our communities, in the larger world — that make claiming a disability identity for many black people an undesirable or even dangerous thing. To say nothing of the ways that we know that disability labels are assigned to black children in school for “cultural” or “behavioral” differences. I think that if we want black disabled people (with or without the identity category) to connect with disability justice, disability justice has to come to them first, in the form of people like me – out black disabled people — living disability justice principles. That it has to come to the places they live, work, and learn. If being black and disabled is unsafe (and we know it is), disability justice has to show how being a part of the movement is better than other ways of getting by.
AWN: What do you wish non-Black autistic people would know about the intersected experience of being Black and autistic?
Alex: At the bare minimum, I want them to finally acknowledge our existence and include us when decisions and policies are being made. When funding is being allocated. Simply, when fucks are given.
Check their privilege and humble themselves. Black folks are statistically the largest demographic of disabled people in the U.S. That doesn’t include those of our communities that are undiagnosed. Furthermore, we represent a large and powerful portion of the autistic community. We can and will grow in power. Don’t underestimate our strengths. Don’t leave us as an afterthought. Do respect our importance.
Tony: It can often feel extremely isolating being Black and autistic because of the added layers of oppression and discrimination that Black, autistic people undergo. Black and autistic people not only deal with ableist institutional structures and ableism from able-bodied individuals (just like non-Black, autistic people), but with racism from institutional structures and from able-bodied and disabled people alike. It can be a daunting process as a disabled, Black person to navigate the disability community—which emphasizes accessibility and inclusivity—and to advocate for those when you know that your very Blackness creates a hindrance to solidarity among non-Black people within the disability community and makes you more vulnerable. I wish that non-Black, autistic people would have that awareness and, consequently, move toward being more sympathetic to the needs and concerns of their Black counterparts within the disability community.
Morénike: Truly, I concur with everything my colleagues have shared thus far about this…literally every word. I would only add this message for our non-Black autistic brethren:
It’s no secret to you that adults on the autism spectrum face a bleak reality. This world wasn’t designed for us as children nor teens nor adults. We face tremendous discrimination and disenfranchisement everywhere. Our employment rates, educational attainment rates, annual earnings, overall physical and mental health, overall quality of life, and even life expectancy are all lower than our non-autistic peers. I’m certain you know all of this. Many of us won’t live past our 30’s…we will die of an accident, or an unaddressed health ailment, or by our own hands at suicide, or at the hands of an abuser. When we do maintain employment and/or other trappings of what society deems as markers of “success,” statistically we are still likely to earn less than others, are at higher risk of being fired, etc.
That’s what all of us deal with. Now take that, exponentially multiply it, and assume that as not only your lived reality, but what others perceive as the totality of your reality. Just as people often seem incapable of fathoming that there is more than just loss and hurt and pain to being autistic, people fail to comprehend the defiant beauty that is Black joy, especially Black autistic joy, but I wish they would try harder to see it. For we are more than our tears; more than our sad stories; more than a hashtag for you to rally behind when you feel like it and then ignore us when you don’t. We are a living, evolving, colorful, multidimensional combination of our heritage, our neurology, our creativity, our resilience, and our own unique selves. And we matter.
Oluwatobi: We exist. We are not rare. And we deserve to be seen and heard as much as our white counterparts are. We often feel out of place in both autistic and Black spaces because they are rarely crafted with us in mind. Our experiences of autism are similar to yours, but also vastly different due to the interactions between race, culture, and neurodivergence. It is frustrating how often our experiences as autistic people are discounted and silenced because they don’t fit into the mainstream, white narrative.
I’d also like to add that we see your antiblackness. Every offhand comment, dismissal, and act of exclusion. And despite it all, I am so so proud to be autistic and Black.
Jessica: Before I say this, let me be clear – I believe in the validity of self-diagnosis, even though what I’m about to talk about is paper diagnosis. So, diagnosis – the ADOS-2 (Autism Diagnostic Observation Schedule, 2nd edition) and other methods of autism diagnosis were developed from testing young white males. So, of course it’s going to reliably find autism best in exactly that population. It follows, then, that our ideas of autism are often based on abstracting those descriptions onto our lives, in reasoning from them or against them. Yet, culturally, I wasn’t raised to look adults in the eye, especially as a kid—it’s disrespectful. Most women—most people—in my church growing up rock while praying. Stimming for me looks like drinking cold water or hot tea, because it’s something I can always do without standing out or seeming threatening.
So what I want people to know about black autistic experience is that while the wiring is the same or similar, the expression of it can look different than you expect. And that some “classic” characteristics of autism are also represented culturally as well. Autism, like any form of cognition, is shaped by and expressed through culture. So my autism may not look like your autism—not in the way of “if you know one autistic person”—but rather the fact that how my autism presents in the world is shaped by my cultural norms and by surviving in a black, female body.
AWN: If you could go back in time, what do you wish you could tell your younger self?
Alex: I would’ve learned the difference between reformative and revolutionary thought. To be radically honest, I used to work as an ABA paraprofessional and even studied to become a BCBA. I definitely did it for the money. My thought was that I could use my power as an autistic person that has “credibility” under elitism and capitalism to reform the field of ABA and make it less oppressive. That entire thought can go straight to hell or whatever place you despise.
Once I grew in revolutionary thought, I realized that systems of ableism must be abolished, not reformed. I realized that my personal characteristics as an autistic person should be loved and respected rather than altered to conform to society. I realized that capitalism enables ableism. Thus, I transformed from pursuing disability justice by altering the system to abolishing the system.
Tony: I’d tell myself that my journey unfortunately might not get any easier as the years progress, but not to worry because I can rest assured that there will be some overwhelmingly loving, supportive, and inspirational people who will come into my life—some merely in passing and others long-term—who will help me along the way so that I will not struggle alone. Those people will affirm and celebrate my Blackness, my queerness, and all that makes me whole. They will help me keep the faith and they will believe in me and my abilities even when I struggle to believe in myself. I should seek out these guides—these wonderful souls—and I should strive to be just as helpful to others along the way.
Morénike: I wish I could advise younger Morénike to be more careful and less trusting. I have scars that I will probably always bear, many of which could have potentially been avoided. I would also encourage younger me to strive for more balance. I have a tendency to fully immerse myself – mind, body, soul, time, emotion, money, energy – into things that I believe in, and as such I haven’t prioritized self-care. One cannot give from an empty vessel without self-cannibalization. Finally, I would admonish younger me not to feel that I have to suppress any part of myself for any person, community, or cause. In previous years, at times I inadvertently allowed significant aspects of my identity, including race and gender, to be figuratively “sidelined” for the sake of the “greater good” of the “community at large.”
Oluwatobi: You’re not weird. Okay maybe a little, but it’s not a bad thing. So many of our quirks and misunderstandings are because we’re autistic, babe. A lot of things don’t make sense now, but they will. You will find a community that makes you feel loved, seen, safe, and completely accepted. You aren’t broken and there’s nothing wrong with you. I can’t wait for you to love yourself as much as I love you.
Jessica: You did a great job of finding and trusting people who would make the world legible to you in a way that you can act on it. Your experiences with constant confusion and failure will help make you an excellent communicator and a relentless yet fundamentally kind human. Neurotypicality is defined by either-or and hierarchical thinking, which is a cornerstone of executive function; your neurodiversity gives you paradox tolerance and a greater understanding of simultaneous and equal truths, and this will be a boon. The people around you now think being a “realist” or a “pessimist” is the best way to be in the world, and they’ll make fun of you for not being one. But the future belongs to the optimists—to the people who believe that the world can be better than it is now. And you know what, historically speaking, so far the optimists have been right.
Learn more about our roundtable participants:
Alexis (Alex) Toliver (they/them) is an unapologetically Black, nonbinary person with multiple disabilities. They are radically disabled and work towards the liberation of all people. Alex is one of the many co-founders of the Harriet Tubman Collective. This is an extraordinary collective of Black, disabled activists. They proudly work as a policy analyst intern for Autistic Women & Nonbinary Network. Although Alex has dedicated their life to liberation, they are also a neuroscientist. They work to combine their scientific endeavors with their advocacy efforts by educating, lecturing, engaging in policy, supporting accessibility efforts, and promoting STEM opportunities to disabled and other marginalized people. They have received awards such as the Howard Hughes Medical Institute Gilliam Fellowship and the National Science Foundation Graduate Research Fellowship to support these efforts. Alex is multifaceted and multi-marginalized. Their life goal is to liberate and support marginalized lives by any means necessary.
Anthony (Tony) Alexander (he/him) currently serves as the Director of Policy & Advocacy for the Autistic People of Color Fund. A graduate of Northeastern University School of Law, he has spent the last several years working with nonprofit and community-based organizations, assisting with their advocacy, community engagement, and policy analysis needs. He believes using collective organizing and policy advocacy, through an intersectional lens, as necessary drivers for bringing about a radical imagination and transformation of liberation. Tony is excited to help the Fund in its mission-driven efforts to empower other multiply-marginalized individuals.
Morénike Giwa Onaiwu (she/her/they/them), PhD(c), MA is a global advocate, educator, disabled person of color, non-binary woman, and parent of children on the autism spectrum in a neurodiverse, multicultural, twice-exceptional serodifferent family. A prolific writer and social scientist/activist whose work focuses on intersectional justice, meaningful community involvement, human rights, and inclusion, Morénike, who was raised in the United States by West African immigrants, is recognized as a leader in various social justice activism endeavors.
Morénike was the first Black woman to Chair the NIH-funded Global Community Advisory Board for HIV clinical research and the first Black Executive Board of Directors member of the Autistic Self-Advocacy Network and Autistic Women and Nonbinary Network. Morénike is the first selectee of the Interagency Autism Coordinating Center (the US federal advisory committee on autism) who is an autistic woman of color. Additionally, Morénike is a Humanities Scholar at Rice University’s Center for the Study of Women, Gender, and Sexuality and Co-Chair of the Women’s HIV Research Collaborative of the Office of HIV/AIDS Network Coordination. Morénike has recently been appointed by Dr. Anthony Fauci to the Strategic Working Group of the National Institute for Allergy and Infectious Diseases.
A full-time faculty member at a public two year college as well as a steering member of the inaugural Autistic Researchers Review Board, Morénike also serves as founder and principal operator of Advocacy Without Borders, a grassroots nonprofit supporting community advocates. Morénike and spouse proudly parent six beautiful biological and internationally adopted children ranging in age from elementary through young adult, all of whom have “hidden” disabilities. Morénike has a Bachelor of Arts in International Relations, a Master of Arts in Special Education with a concentration on autism and developmental disabilities, and is a doctoral candidate.
Oluwatobi Maeyen Odugunwa (they/them) is a Black nonbinary lesbian and immigrant with multiple disabilities. They identify as neurodivergent, Mad, and as a crip. They graduated from Vanderbilt University with a Bachelor’s degree in 2021, and majored in Medicine, Health, and Society as well as Gender and Sexuality Studies. Oluwatobi was a student activist all throughout college focusing on LGBTQ and disability issues. Now they are involved with workers rights and Black liberation groups in their community as well as working with the Autistic People of Color Fund. They also work as an anti-bias coordinator at a publishing company. Justice work is core to Oluwatobi’s personhood and they look forward to doing it for the rest of their life.
Jessica Horvath Williams (she/her) is a President’s Postdoctoral Fellow in English at the University of Minnesota. She is a member of the Critical Disability Studies Collective, the executive board of the Autistic Women and Nonbinary Network (AWN), and serves as a healthcare activist-educator in the Twin Cities. She teaches and researches at the intersection of feminist disability studies and nineteenth-century U.S. history and literature, and her current project revises the history of disability, tracing many of its key ideologies through ideal womanhood, racial capitalism, and unwaged labor. Her work has appeared in Studies in American Fiction.
Interview by Lydia X. Z. Brown, AWN Director of Policy, Advocacy, and External Affairs