Activist Lydia X. Z. Brown on Disability Justice, Mutual Aid, and How Race and Disability Intersect

They will be featured in Soledad O'Brien's "Matter of Fact Listening Tour" series, which will stream on Thursday, March 18 at 7 p.m. ET.

 It's 11am, and Lydia X. Z. Brown is talking food. Brown is a disability justice activist, attorney, educator, community organizer, scholar, speaker, and consultant, who is also something of a home cook. And while we could have spoken endlessly about Thai, Ethiopian, Afghan, and Chinese food, I hopped on the call to dive into their activism and advocacy, which works to address and end both interpersonal and state violence against disabled people, with a focus on those living in marginalized communities, jails, prisons, schools, and other disability-specific institutions.

Brown, who uses they/them pronouns, is matter-of-fact about the challenges facing multiply marginalized people. They are quick to explain how systems of power and white supremacy must be dismantled to make any real, lasting change, while keeping in mind the different ways individuals experience forms of marginalization.

Brown began their work over a decade ago. They have since co-founded the Washington Metro Disabled Students Collective; wrote and introduced legislation on developmental disabilities training for law enforcement in Massachusetts; and founded the Fund for Community Reparations for Autistic People of Color’s Interdependence, Survival, and Empowerment, in partnership with the Autistic Women and Nonbinary Network. Together with Morénike Giwa Onaiwu and E. Ashkenazy, they’ve co-edited the anthology All the Weight of Our Dreams: On Living Racialized Autism. Brown is also an adjunct lecturer and core faculty in the Disability Studies Program at Georgetown University and an adjunct professorial lecturer in the American Studies Program at American University’s Department of Critical Race, Gender, and Culture Studies. They’ll also be featured in a live episode of Soledad O’Brien’s Matter of Fact Listening Tour, which streams on Thursday, March 18, beginning at 7 p.m. EST.

Speaking with Brown felt like taking a dose of rigorous empathy. After this horrific year of violence and grief, Brown is there, clear-eyed and ready to push forward with a fierce sense of justice. Here, the activist shares how they came to advocacy work; disability justice; and the intersections between disability, gender, and race.

Marie Claire: How are you doing? How has the pandemic treated you?

Lydia X.Z. Brown: Well, you know, we're living in a pandemic and the world is the white supremacist hellscape so you know, bad.

MC: It’s been especially hard with these twin crises of racial unrest and the public health crisis. Could you tell me a bit about you and how you came to advocacy work?

LB: I move through the world in a very particular way. I experience multiple forms of marginalization. As I move through the world as an openly queer and non-binary and disabled East Asian person of color, I also move through the world with access to a number of privileges. I went to law school. I’m a light-skinned person of color and a citizen. And while I am disabled, I’m also a hearing and an ambulatory person. And so I move through the world, like many of us do, experiencing multiple forms of marginalization and also experiencing privilege. Not everybody has this specific experience, as there are people who really don’t experience any marginalization at all.And there are also people who really have almost no access to privileges or very few. For me, I move very much in in-between spaces.

I've been doing disability rights and disability justice advocacy now for more than a decade. And I use both of those terms deliberately because a lot of people don't understand that they're not the same thing.

MC: Could you say more about the difference between disability rights and disability justice?

LB: Disability rights is deeply concerned with using the law and policy as means of effecting change for disabled people in society. Disability justice understands that law and policy are necessary but not sufficient. We actually need to radically transform our society and culture, because you can't legislate morality, you can only pass the best laws possible. You could even enforce them, which is funny, 'cause we don't.

The law will never disappear ableism, because the law is itself an ableist and white supremacist tool. So disability justice understands that disability rights also tends to be primarily led by cisgender straight white men with a disability.

Disability justice is a framework co-created by Black and brown disabled people and queer and trans disabled people, and other disabled people who are at the margins of the margins. So I say: I do both disability rights and disability justice work, and all of my work is grounded in disability justice. I've always believed that every single one of us has an important moral obligation to do whatever we can to fight against injustice and oppression in every possible form.

MC: You’ve previously written that, because we cannot legislate morality, we should focus on changing systemic and systematic forms of oppression instead of individual behaviors. What can we do, from a policy standpoint, for disability justice?

LB: So in the work that I do for policy advocacy, how I approach that work and how I encourage others to, is to do that work with abolitionist principles, and moving with my guiding principles in mind, to approach it using policy work as a tool for non-reformist reform—that is, reforms that actually seek to undermine and destabilize the system that they occur in as opposed to reformist reforms which seek to uphold the system.

When a lot of people talk about the fact that our jails and prisons are the largest provider of mental health care because huge percentages of people who have psychosocial disabilities are in our jails and prisons, the reformist reform would say, we can try to decriminalize and to divert people with mental illnesses away from going to jail or prison, and instead fund treatment and therefore try to funnel people into receiving treatment instead of having to go to jail. But the disability justice informed non-reformist reform recognizes that most of what constitutes treatment related to mental health is actually just as coercive and carceral as an overt jail or prison is.

So with non-reformist reform, we ask: How do we take money out of all carceral spaces? If what we're talking about is serving and supporting people with mental illnesses, psychosocial disabilities, how do we get money back directly to people with psychosocial disabilities? Being able to afford rent and have somewhere safe to live is mental health care. Going to see your doctor once a year is also mental health care.

And how do we ensure that the services that we're funding are those that are led by and informed by the perspectives of people who actually have psychosocial disabilities, that the programs that are available to us—whether in the community or more intensive programs—are ones that are not coercive, that people are genuinely truly free to enter or leave at any time? And that they are managed and controlled by people with psychosocial disabilities, especially people with psychosocial disabilities who are also people of color who are also queer and trans, who also come from low-income communities or from immigrant communities?

MC: Speaking of funds controlled by the communities they serve, you launched and lead the Fund for Community Reparations for Autistic People of Color’s Interdependence, Survival, and Empowerment. Could you describe what kind of work the program does and how it’s funded?

LB: So, the fund—we’ve given out almost $100,000 to people, and the vast majority of the money that we've received has come from individual people's donations. We’ve occasionally had a couple of small foundations and employee gift matching programs also make some contributions, but by and large, we have not received significant foundation money. We've never gotten any grants past the initial award from the American Association of People with Disabilities that I used to seed the fund, and a lot of our donations are small donations that come from directly impacted community members who are multiply marginalized themselves.

Now that we have so many more people who are receiving and relying on money through the fund, we really need people that have a lot more resources to step up to the plate.

MC: This sounds a lot like mutual aid. Do you think that mutual aid is something of a means to an end or just a stopgap that will eventually rely upon larger funds or organizations for long term assistance?

LB: It's both at the same time. And I always say at the fund that we have a mutual politic or political vision. ur guiding framework is 1) mutual aid and 2) redistributive justice.

Mutual aid is neither a condescending thing where people who have more privilege, power and resources go into a community that they are not from that is deprived of resources, that is exploited, that is subjected to extracted behavior and offers resources as a means of charity—nor is mutual aid, if it is done justly, it cannot be a system in which everybody is expected to be able to perform some equal or equivalent amount of labor, because that actually ends up replicating ableist and capitalist structures.


woman in snow in front of community fridge

(Image credit: Andrew Lichtenstein)

What mutual aid actually is, is people within marginalized communities supporting one another in the different ways that we are able to recognize that each of our own capacities and abilities to offer anything are constantly in flux and are often at direct threat and undermined because of the deprivation, exploitation, and extraction that we are subjected to on a daily basis. And that is why mutual aid is both a stopgap and something that we have to do, but it's also a means to an end toward a more liberatory future. It is also part of a liberatory future because people supporting one another is part of the world that I want to live in.

That is what I want in the next world, that our communities continue to be supportive to each other. That where one person has less resources and less capacity, that other people who have more resources and have more capacity are able to support that person. And that that's done without expectation of labor in return, but because we actually care for each other and we believe that caring for each other is part of doing justice and living justly.

Then a second part of our political guiding vision and framework is redistributive justice. And what I mean by that is acknowledging, understanding, and responding directly to the system structures, institutions, and processes that deprive and deny us resources, that exploit us, and then extract our resources, our capacities, our labor.

And in practicing redistributive justice, we need to ask other people to give what systems have unfairly distributed deliberately by depriving some and by enriching others. And by incentivizing people with more power to participate in wealth accumulation projects built on legacies of stolen land and genocide and enslavement and returning funds to communities that have been exploited.

MC: You previously wrote, “the histories of ableism and racism are co-dependent and intertwined...Both disabledness and abledness are defined based on proximity to and approximation of whiteness as an idea. What that means is that to be defined as fully nondisabled requires being white.” Why does race matter when talking about disability justice? How are the experiences of white disabled people different than disabled people of color?

LB: We cannot talk about disability honestly or fully without talking about race, because white supremacy not only defines abledness within proximity to and approximation of whiteness, white supremacy defines whiteness itself as the epitome of health, strength, sanity, intelligence, and beauty. And that is why white disabled people are taught by white supremacy and ableism that their disability detracts from their ability to fully identify with and participate in whiteness. That does not mean, to be clear, that white disabled people do not experience or benefit greatly from white privilege and the structures of white supremacy. Because they absolutely do, especially at the direct expense of disabled people of color. However, what it means is that white disabled people are understood as lacking the full ability to participate in the idealized vision of whiteness.

This is why whiteness is also defined as cisgender masculinity. Whiteness is also defined as heterosexuality. Whiteness is also defined as adhering to Christianity. And whiteness is defined as many of these aspects of what is considered the norm and not just the norm or the default, but the ideal. So when a white person deviates from those, in any way, that is why they will experience marginalization.

And part of that marginalization arises from threatening their whiteness. And that's true, even for white people who are marginalized in other ways who seek to reject and work against white supremacy and structures of white supremacy that operate in tandem with every other form of oppression. This is why a white trans person absolutely experiences anti-trans oppression, and yet also benefits from white privilege.

"Our default image for all disabilities is white people."

And at the same time to be a person of color already means that our supposed mental and physical inferiority is imputed to us simply by virtue of not being white. People in Black, brown, indigenous, and Asian and other negatively racialized communities are disabled. Our disabilities become prima facie evidence under white supremacy for that supposed inferiority. And so disability justice helps us understand the ways in which disability and race have always been deeply intertwined in their definitions, as well as their treatment within the law and within society and culture.

When disability arises in communities of color, disability is both deliberately hyper-visible in our communities and invisible at the same time. Disability becomes hyper-visible for people of color, especially Black and native people, when disability means threat or menace, contaminant or contagion. And you can trace that to immigration law that considers immigrants–particularly Asian, Black and Brown immigrants–as being dirty or diseased. You can trace that to the rise of societies for public hygiene that advocated for eugenic sterilization, you can trace that through the construction of workhouses, asylums, state schools, large-scale disabilities institutions, group homes, halfway houses, in jails and prisons and psychiatric institutions—that when disability arises in our communities, it is a threat to be contained. It is a terrifying contagion.

Disability has already become invisible in our communities when disability would have otherwise have meant deserving access to care, support, or services or accommodations. Our default image for all disabilities is white people because that's in the context of charity and medical model approaches to disability. And yet disabilities that occur primarily or only disproportionately in communities of color and other marginalized communities are not usually talked about as disabilities, even by members of our own community. For example, disabilities like lupus and fibromyalgia and sickle cell disease, which are much more common in Black people, disabilities like HIV and AIDS that have long been associated with queer and trans people (especially queer and trans people of color), disabilities related to the trauma of surviving impoverishment, empire, militarization, occupation abroad and at home, ongoing effects of colonization, militarized occupation and imperialism, the effects of war and famine and genocide, and all the ways in which these horrific atrocities as well as disasters create and exacerbate trauma, physical disability, and other mental disability. We don't normally talk about those experiences in the context of disability, and yet they are.

MC: We are still in the midst of pandemic that has disproportionately affected marginalized communities and disabled people, and you’ve written about centering disability in the response to COVID-19. How has the pandemic affected disabled people?

LB: The pandemic both moved things into a virtual world that is significantly more accessible for many disabled people, and exacerbated and worsened the digital divide that affects disabled people. That now results in deprivation of access to the means necessary to succeed in many school programs and many types of work, and even to be able to afford and maintain social connection. More than 98 percent of all web content is inaccessible in one or more ways. And disabled people also have significantly higher rates of impoverishment, unemployment, underemployment, and precarious employment, all of which are exacerbated for disabled people of color.

Disabled people are also substantially less likely to have a reliable broadband connection, let alone to have a device that is capable of reliably using the internet and using web-based applications. Things are significantly more accessible for many disabled people, including many multiply marginalized disabled people, and things are also significantly less accessible to many other disabled people, including multiply marginalized disabled people, at the same time.

And you can see that both in the literal mechanisms of inaccessibility where a particular application is not accessible, and then the ways in which automation is increasingly intruding into our lives and making decisions that affect us. And it was just in the news over the weekend that the people who are applying to rent may now be subject to an automated AI based tenant screening when they apply online. And that's pretty horrifying.

We know that the use of predictive policing tools and other surveillance mechanisms like surveillance used for “public safety” and surveillance mechanisms and data through automated proctoring used widely now in K to 12 as well as higher education only serve to criminalize disabled people and to contribute to the massive morass of interlocking carceral systems that affect disabled people living at intersections of race, class, gender, and other points of domination and oppression. And we know that disabled people also face very particular forms of bias and discrimination within those systems that perpetuate underlying ableist ideas and values.

MC: You’ve also discussed the algorithms created when a hospital would be overloaded with COVID patients, how they used algorithms to determine whose life is more worth saving, for lack of better term.

LB: I mean, that’s literally what it is. They decided whose lives are worth living and whose lives are worth saving. So all of the tools that we create are created by people who live with the same societal and cultural values, systems structures and processes like the rest of us do, so there is no machine that you can build that is devoid of our social context. We have to understand that those tools don't exist in the abstract and they can't be magically neutral or objective because they exist in a profoundly racist, classist, misogynistic, and ableist society, and they will serve to uphold and perpetuate the norms of that society.

LB: I actually chose to participate in the program because the producer who reached out to me is a queer Black woman. And that was important to me, that I knew that this series and this particular special was going to be produced by somebody who actually understands the impact of multiple forms of marginalization and who was not reaching out to me as a token or to co-opt me or my message. Because often that is what happens to us, where someone wants you to be on a committee so that they can brag about finally getting a person of color, or finally getting a disabled person. They're finally getting someone within the trans community, and oftentimes the way that that plays out is because of the particular privileges that I have. Like I might be invited into a room as the token person of color because I'm a light-skinned person of color. And so I might be perceived as less threatening, you know, or I might be invited in as the token trans person, because I'm a transmasculine non-binary person.

But because the person who reached out to me was a queer Black woman that gave me hope and encouraged me that participating in this project would be a way of having my voice heard and held with care, and that can be very hard to find.

Viewers can stream the special live on Matter of Fact's websiteYouTube, and Facebook Live channels, or by bookmarking this page and watching the broadcast below. Pre-show begins at 6:30 p.m. EST, with the full segment starting at 7 p.m. EST on Thursday, March 18.

Zoe Guy

Zoe Guy is the digital fellow at Marie Claire, where she covers pop culture, hot celebrity gossip, movies and TV. She’s obsessed with Martin Scorsese’s adaptation of The Age of Innocence, anything written by Jesmyn Ward and stan Twitter.