[Interview between Speaker 1 (Meg) and Speaker 2 (Lydia)
Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify autistic voices, and change the way we think about autism in life, and in occupational therapy practice. I’m Meg Proctor from learnplaythrive.com.
Meg: Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say, ‘autistic person,’ rather than, ‘person with autism’. What we’re hearing from the majority of autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘autistic’ to help reduce the stigma.
Hi, and welcome to the show. On this podcast OTs and others have been following my journey to become more culturally competent in autistic culture. We've been challenged to work harder on our own perspective-taking skills. We've been reminded to change how we teach and set up the environment rather than asking the autistic person to bear the whole burden of change. And we've been inspired to look for how we can help our autistic clients build on their strengths and interests rather than focusing on deficits and challenges.
But when we are working to understand autism as a culture, we can’t have this conversation without also talking about race. This came up in the very first episode with Sarah Selvaggi-Hernandez. We started talking about black autistic kids in foster care, police officers in schools… And we both agreed it needed to be a much longer conversation. So today on the podcast I have autistic attorney and activist Lydia X.Z Brown here to talk with me about autism and race, and why this conversation should be at the front of our minds in our work.
Lydia is an attorney and a disability justice advocate who specifically focuses on violence against multiply-marginalized disabled people. Lydia teaches at Georgetown University's Disability Studies Program, supports the Autistic Women & Nonbinary Network public policy advocacy, founded and directs the Fund for Community Reparations for Autistic People of Color's Interdependence, Survival, and Empowerment, and co-edited All the Weight of Our Dreams, which is an anthology of writing and artwork by autistic people of color. They’re also Policy Counsel at the Center for Democracy and Technology.
Lydia thinks fast and understands systems of power and oppression deeply, so this conversation moved through a lot of content at a quick pace. I’m going to walk you through the interview to reflect on some of what they’re saying, break it down a bit more, and tie it in to occupational therapy practice. Here’s Lydia.
Meg: Hi Lydia!
Lydia: Hi Meg, thank you so much for having me!
Meg: Yeah! I just ran through a few of your professional highlights, but tell us a little bit about you as a person and how you came into this work.
Lydia: I began doing advocacy work probably in high-school, or even earlier than that, although I wouldn't have necessarily used that word or terminology. I've believed for a very long time since I was a young child that every single one of us has a moral responsibility to use whatever resources we have against injustice and oppression in all of their forms, and of course I recognized that resources mean different things. It can mean time, money, skills, knowledge, energy, emotional capacity; it can mean all of those things. And what resources somebody has may fluctuate throughout their lifetime or from moment to moment, and will look different at different points and contexts. But whatever resources somebody has, above and past that they need to minimally live a decent existence to be able to feel okay with themselves and their lives — if you have resources past that, then I believe we have a moral obligation to use those resources to disrupt, divest, and end oppression and injustice.
Meg: One of the things we’ll talk about a lot on the podcast is the strengths that often come with being autistic. Many autistic people have such a clear, convicted sense of justice, and are both uninhibited and determined in their journey to fight against oppression. This was clearly something that Lydia felt strongly for such a long time. And if you look Lydia up online, you’ll be blown away by both the volume and depth of Lydia’s work. Since Lydia specifically centers multiply-marginalized disabled people in their work, I asked Lydia to talk about why race matters for therapists working with autistic people. Here’s what Lydia said.
Lydia: In the world that we live in, and in particular here in the United States where most of us that are listening to this podcast are probably located, it's impossible to exist in the world without your existence being marked by race and by processes of racialization. The entire United States was built on a bedrock of theft and hoarding of land and resources from Native peoples, from Black peoples, later from Latinx, from Southern-American indigenous peoples, from Asian peoples. And that has continued today. The legacies of white supremacy have always continued and affected people of color’s lives now.
And unfortunately the way that white supremacy works is that it simultaneously defines the norm, the ideal, and the baseline based upon white people while devaluing, harming, excluding and attempting to destroy the lives and existence of negatively racialized people — what we often call, 'people of color'. So when we talk about disability and autism, we have to understand that both ‘abledness’ — that is, being counted as 'non-disabled’, 'neurotypical', 'sane', 'functional', 'healthy', 'normal' — is coded with whiteness. And at the same time, 'disabledness' is coded as against whiteness as well. That is, when white people are disabled, their disability under white supremacy detracts from their same ability to benefit in the same way from white supremacy. And yet their whiteness means that, of all disabled people, white disabled people are the ones who are most seen as deserving of support, services, accommodation, respect.
Meg: Okay, I want to pause and unpack some of this. I want to talk about a term Lydia used, ‘negatively racialized.’
So, the term ‘racialized’ means that race is not something inherent, it’s a cultural construct. And within a white supremacist society, race is assigned to various groups by the white people with the most power. When black slaves were brought to the US, they became ‘black’ for the first time. Today and throughout history, when immigrants arrive to the US, they are categorized. A light-skinned person of German ethnicity is probably going to be considered white. A dark-skinned person from Ghana will be considered black.
This has happened since white people arrived in the Americas. Of course, many racialized people have affinity and identity within their racialized group. But the distinctions remain socially constructed, and are often used to wield power. These categories are also subject to change. Italian Canadians used to be considered non-white, but now they are almost universally recognized as white. White people are racialized too. But black, brown, and indigenous people are negatively racialized in our society. They are put into a category and then oppressed on the basis of that category.
Alright, so Lydia is saying that white disabled people still benefit from white privilege, even though they often lack the same access to participation in their lives and in society as non-disabled white people. Here’s more of the conversation with Lydia.
Lydia: When most people think about disability, they think only about white disabled people, which is true even for many disabled people of color because of the world in which we live in. We are conditioned to treat whiteness as the norm. So when people think, "Oh, let's talk about how to help autistic kids in school," they are assuming that the group of autistic kids they are talking about are white. Now simultaneously, people of color, whether black, brown, indigenous, Asian, or mixed-race, are disabled — our disabilities are held against us under white supremacy and used as reasons to accentuate our supposed inferiority. The reason why is that we are 'less than human'.
We know throughout history that ableism — that is 'discriminatory and oppressive values and practices about disability and which kinds of people’s bodies and minds are valuable as opposed to which are expendable or disposable' — ableism is part of every other form of oppression and oppressive thinking. What that looks like is the strategic deployment of disability labels and diagnoses as a means of controlling, subjugating, and furthering other forms of oppression against other oppressed, marginalized, and targeted communities.
Meg: Can you say more about what that means?
Lydia: The idea that to be impoverished — that is, to be someone who is in your generation low or no-income, or especially to be generationally impoverished — is the result of irresponsibility, laziness, or stupidity, is not just a core part of class oppression and capitalist ideology but is deeply ableist. Because what it communicates is the idea that you are poor because you are inadequate or insufficient. And simultaneously, under white supremacy, when disabled people of color are actually disabled, that is used as evidence of our inferiority. And even if we are not actually disabled, we are often assumed to be disabled, or to be inferior simply because of the way our brains and bodies work even if disability itself isn't strictly part of the equation.
And that traces its way throughout history, whether it's in looking at the 1800's at the way that Chinese immigrants were always talked about as ‘dirty’ and ‘contaminated’, and how that rhetoric translated very easily into the 21st Century of the first SARS outbreak, which was referred to in a very déjà vu way as 'a novel Coronavirus originating from Guangzhou province in China'. And now we hear the news over the last several months saying there is a 'new novel Coronavirus that originated in Wuhan, China', and that East-Asian people in general, but Chinese people in particular, are seen as contaminants — something dirty. And how people talk about a 'clean' Chinese restaurant versus a 'dirty' Chinese restaurant. And with the assumption that Chinese restaurants, in particular these dirty places, you can look at specifically the ways in which enslaved black people were labeled as mentally ill with a diagnosis like ‘drapetomania’ for wanting to be free! For wanting to escape enslavement. And white slaveholders and their allies said if a black person who is enslaved wished to be free, that was a mental illness.
So throughout history, regardless of the particular axis of marginalization, the logic of ableism has always been deployed as part and parcel of white supremacy with colonialism, classism, with all other forms of oppression in some way or another. So when people ask me today what does race have to do with autism, the answer is it has everything to do with autism. Because you do not work with, or talk to, or exist around autistic people somehow devoid of race. If they are white autistic people, their race absolutely shapes the world they live in and how they are perceived. The fact that they are most likely to be seen as someone who needs help, even if that's an incredibly condescending way, rather than someone who is black, brown, indigenous, Asian, or sometimes mixed-race people, where instead the reaction is — ”You are a burden. You are a drain. You are a problem to be managed, handled, contained, or controlled," or, "You are a threat. You are a danger."
Meg: Okay, so we know that as non-autistic people we won’t ever know what it’s like to exist in the world as autistic. We’ll never feel the daily burden of ableism — a world that values one way of thinking and being over all others. And those of us who are white know that we will never truly understand the experience of an autistic child who is brown, black, indigenous, or Asian. Where we fall short is recognizing our own biases, as well as systematic, systemic, structural, and institutional oppression, and how they play out for our clients. Those of us who have spent any time at all doing anti-racist work know that we can’t just choose to be not racist. We must instead acknowledge how deeply embedded racism is both in our society and in ourselves, and then we must fight against it.
So it’s worth spending a good bit of time with Lydia’s question. How might we see our black, brown, and indigenous clients as a problem, a threat, or a danger? How might we view the same situation differently for a white child? How might a teacher, a school system, a police officer, a disability evaluator, or a thousand other people who make decisions about our lives look at that child differently, and give them different options, different therapies, different consequences?
I wanted to hear more from Lydia about this. So I asked them how the experiences of autistic people of color are different from those of white autistic people..
Lydia: With regards to autism, but also other disabilities, people of color are both much more likely to be over-identified as disabled when we're not actually necessarily disabled in a particular way based on racist and ableist ideas about our existence in the world. We are simultaneously also significantly less likely to be identified as autistic or having another disability because of, again, ableist and racist ideas of who we are and how we exist in the world. And the assumption of most people is that autism, like other disabilities, is primarily a 'white person thing', or not really a thing. And in the case of autism, this is gendered as well, where a lot of people just assume that autism is a 'white boy thing'. So if you are a girl, or you are non-binary, then you are excluded from that equation as well.
What that means in practice is that when we've been in school, the ways that our teachers and classmates treat us are invariably and inevitably shaped by their assumptions about our race and about our disabilities. There are a lot of common experiences that autistic people across race talk about, but the ways that they end up look very different.
Meg: Okay. If you’re someone who likes data, there is so much data to back up what Lydia is saying. Until 2010, white children were about 19 percent more likely than black children and 65 percent more likely than Latinx children to be diagnosed as autistic. Black and Latinx children got their diagnoses much later than white kids, too. There is a persistent gap in diagnoses and access to services across socioeconomic classes. Newer data shows this may be closing, but it’s too soon to tell for sure.
Meanwhile, black children, especially boys, are much likely to be diagnosed with oppositional defiant disorder. And, anecdotally, may be more likely to be treated as having ‘behavior problems’ rather than ‘sensory needs’, or ‘different learning needs’.
The impact of systematic racism cannot be underestimated here. I asked Lydia to talk about how racism and trauma impact the experiences of disabled people of color, especially children.
Lydia: Most of us in the autistic community agree that virtually all autistic people have survived one or more forms of trauma. It's an unfortunate in-joke that many of us have talked about with each other, that probably all of us have some form of PTSD or another. What many people don't realize outside of some communities of color is that there is even psychological research on the phenomenon of race-based stress — experiencing racism as a specifically recurring traumatizing experience. That living in a world that is profoundly racist as a person of color causes trauma.
Trauma is itself a kind of disability. And so disabled people of color experience not just the trauma of living in an ableist world, but the trauma of living in a racist world. And the compounded trauma of living in a world where people are both ableist and racist at the same time in ways that are intermixed and impossible to extricate or separate does something to you.
Meg: We hear more and more about trauma-informed OT practice. So many of our clients have trauma histories… So we need to keep trauma in the front of our minds for each child we work with. And for those of us who don’t have a strong trauma-informed practice, this is a great place to start to grow and expand so that we can better serve.
And, as Lydia points out, we need to expand our understanding of trauma to include race-based stress and recurring experiences of racism. So I asked Lydia to talk a bit more about police violence and the presence of police in our communities to help us better understand the experiences of trauma experienced by people on the receiving end of systematic racism.
Lydia: I've heard organizers from HEARD — Helping Educate to Advance the Rights of Deaf Communities — estimate that based on available information that is officially collected, usually in very ableist and racist ways, and community information, that is not studied by people who would be looked upon as having an academic credential per se, because we often know things in community that are not in a peer-reviewed academic journal. But we know that, and we understand that's community knowledge. I've heard them estimate that upwards of 80% of people who were killed by police and people who were incarcerated are disabled in one or more ways.
What that means is that if you are black or Native in this country, and you are also disabled, then you are at the highest risk of being targeted for state violence through criminalization. And I want to be very clear here — my positionality is as an East-Asian person of color who's also disabled. I do not belong to a group of people that at large are targeted en mass for police incarceral violence. But what I do know is that those of us who live at the intersections of multiple marginalizations will always be at higher risk than those who experience more intersecting layers of privilege. And for some of us, that's complicated.
There are a lot of ways in which I'm very privileged. There are a lot of ways in which I experience significant marginalization. I'm not one of the people that is most likely to be targeted for horrific violence, but my community members, many of whom are trans women, sex workers, do other criminalized work, are black or native — they are. I believe it's my responsibility to support and amplify their work and their voices in challenging that particularly destructive form of white supremacy and ableism.
Meg: One thing I've seen in the schools is the presence of armed police officers, increasingly in schools that are mostly black. And we see in the news all the time where black autistic kids are criminalized for actions that would be treated very differently if police officers weren't in schools, and likely not considered criminal if the child were white or non-autistic. Can you say anything about the presence of police in schools and school-to-prison pipeline?
Lydia: Police don't belong in schools. But the bigger problem is that police don't belong in society.
Meg: Did you hear that? Lydia says police don’t belong in schools. Police officers in schools handcuff, arrest, and charge kids for breaking school rules. For fighting, not listening, even breaking the dress code. Black students and disabled students are arrested, restrained, and secluded at alarmingly disproportionate rates compared to white and non-disabled students. I’ll link to some data in the show notes but here are the highlights: Black students make up around 16% of the student population, but account for 31% of arrests. And restraint, seclusion, and involuntary confinement, are used far more commonly on disabled students than on non-disabled students, with black students over-represented here as well.
The racist police force that we are fighting in the streets is simply duplicated inside of schools. In the wake of recent protests, Denver, Colorado recently announced that they are removing all police officers from their schools.
Okay. So on to Lydia’s next point — police don’t belong in society.
I actually agree with Lydia on this point. But you may or may not agree here. It’s a big leap to make, and hard to imagine a society that you haven’t seen before. And it takes a lot of work and a lot of analysis to start to see that prisons and police may not be here to ‘keep us safe,’ but rather to maintain systems of power and privilege.
For the first time, we are seeing mainstream communities calling to defund the police and instead have trained mental health professionals respond to many calls. Are police really the best people to respond to the majority of 911 calls which relate to drug and alcohol issues, interpersonal disputes, and mental health crises? I’ll link to some resources in the show notes if this is something you want to keep thinking about and learning more about.
And even if you disagree, it’s worth considering from an occupational justice lens. If prisons are systematic occupational deprivation, targeting black, impoverished, and disabled people above all others, what is our position on this, as a profession?
And taking it back a step further, how do we move closer to a society where systems of oppression and trauma no longer exist? And until we get there, how do we protect brown, black, and indigenous disabled people and ensure they have access to autonomy and respect?
I want to hear from you. Each month in my Facebook Group, Learn Play & Thrive, Autism Resources for Professionals, we talk about some of the hot issues from the podcast. I’ll link to the group in the shownotes. Join me there to share your perspective and learn from others
To wrap up my talk, I asked Lydia one final question:
Given that many of us will never personally understand what it means to be an autistic person of color in this world, what is one action that you would like to see people who work with autistic kids taking in our lives or in our own work?
Lydia: Whenever any person, which includes me, does work that affects communities to which we do not belong, we have a responsibility to the people in those communities to do our best to educate ourselves to the extent possible and to actually divert and redistribute resources of all kinds — going back to that earlier comment — to people who belong to those communities.
So if you have access to research funding, are there actual autistic people of color that are getting that research funding, or are they doing so on a level that shows parity with the people who are white and degreed, who already have experience accessing that money? If you are designing a program to benefit students in middle school, are there actual middle school students especially the autistic students of color that have an actual decision-making role in designing what that program looks like and what its goals are, or even whether it should exist in the first place? If you're teaching other people who are entering the field, whose work are you using to teach with? Who do you hold up as examples? For example, do you read the work of Sarah Selvaggi-Hernandez, who is autistic, native, an OT, and a professor?
And for me, it always comes back to a question of, "How do you use privilege if you have privilege or access to it, to challenge the structures that create such severe power imbalances that they would destroy lives?" How do you use your position in a school to advocate for cutting all funding to police, to begin with, because police should not exist in a just society? Prisons cannot exist in a just society. Involuntary and coercive treatment cannot exist in a just society, and yet it is people in the OT profession and professions that are related to the OT profession who are often at the very front of fights to say, "Well, we need to subject children to certain activities or treatments because it's for their own good." They know what is best for them. Or who will even say, "Yes, we need to reform the criminal legal system by putting more funding in the hands of social workers or mental health workers," without understanding the horrific ableist and racist violence that has happened historically and happens today in social services, mental health care, hospitals, in all of the supposed helping professions. And for those who are working in this field who are thinking, "Okay, great, well you may have just told me that me and my whole field are awful; what do you mean?" The answer is — it is not that you have to be awful. The opportunity and the offering to you is what can you do to challenge the violence of the field that you are in and to reduce your capacity for individual harm, because we all have capacity to harm, and to maximize your capacity to do right by the people that you work with.
Meg: Thank you so much, Lydia. Where can we find you online to keep learning from you and your work?
Lydia: My homepage is at autistichoya.net. I'm migrating some of my information to a new homepage at lydiaxzbrown.com. You can also find me on Twitter and Facebook using the username autistichoya.
Meg: I’ll link to all of Lydia’s info in the show notes. To wrap things up today, I just want to echo Lydia’s question: How do we use our position and our power as OTs? Does our work lead to more of the status quo? Or do we use our position to amplify the voices of those who are systematically ignored and disempowered? Lydia gave some great examples of how to do this. We can highlight autistic voices in our research, and in our education. We can question the presence and actions of police in our schools, and advocate for our autistic clients’ right to autonomy over their bodies. And we can examine whether our treatments are empowering or coercive. If the last one has you stumped, please keep listening. We’re going to tackle that here on the podcast in so many ways.
Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast for show notes, a transcript of the episode, and more. At learnplaythrive.com you’ll find a blogpost by Lydia with more on this topic, as well as a free eBook and a 50-minute training for OTs who want more effective strategies for working with kids on the spectrum. And if you learned something today, please give the show a 5 star review on iTunes, share the episode with a friend, or post it on your social media pages in groups. Join me on the next episode, where I’ll be talking with Kristie Patten, an NYU OT professor, about using a strengths-based approach to autism interventions. Kristie’s insights totally changed my approach to autism and behavior. You don’t want to miss it. Until then, keep listening and learning.