Transcript of episode 1 with Lydia X. Z. Brown

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Kelly Bron Johnson (00:00): 

Okay, welcome everyone. This is the intersections on the spectrum podcast. It's the brainchild of Doug  Blecher and Kelly Bron Johnson, created to discuss intersectional issues within the autistic community,  give visibility to commonly marginalized, repressed, underrepresented, or erased identities and issues.  We aim to introduce you to the people and stories you didn't know about, but needed to hear and hope  that seeing yourself represented in the community allows you to feel seen. 

Doug Blecher (00:29): 

We're honored to have, uh, and very excited to have Lydia Brown, um, who is an autistic disability rights,  activist writer, attorney, and public speaker, who is honored by the white house in 2013 as a champion  of change as our first guest. Lydia, thanks so much for joining us today. I wanted to start out with, you  know, you were an editor for all the weight of our dreams, the first ever anthology entirely by autistic  people of color, featuring 61 writers and artists from seven countries, which was published a few years  ago in 2017. I was definitely one of the big inspirations for this podcast. So three years later, where do  you think we are in terms of autistic people of color being seen and heard? 

Lydia X.Z. Brown (01:25): 

This is Lydia. Thank you so much for having me. I'm glad to be part of this conversation. Three years  later, we are still contending with racism, with white supremacy, with ableism, and that's not going to  change anytime soon. Unfortunately, we're also still surviving. We are resisting. We are struggling  against, and we are fighting against those very same systems. I think more people today are a little bit  more aware that autistic people of color exist and that autism is not just for white boys and white men,  but at the same time, discourse on autism is largely shaped by white autistic people. Most organizations  that are focused on autism are led by at least mostly white people and autistic people who have the  greatest visibility and are the most likely to be approached, to be featured somewhere, to be treated as  an expert somewhere are probably going to be white autistic people. 

Lydia X.Z. Brown (02:28): 

At the same time, there is incredible work being done by autistic people of color globally, including by  many who are not featured in the book. As incredible as the book was, it was a tiny snapshot of really  what is only a handful of autistic people of color from around the globe. You can see work out there by  Kayla Smith who started the autistic while black hashtag on Twitter, which is pretty awesome. You can  see there's work that incredible scholarly work from Sara Acevedo, who is at the university of Miami,  Miami university at Ohio. I always get that a little bit wrong. Um, and Sara Acevedo is doing incredible  work out there and there's just, you know, a wealth of examples to choose from. Those are just two,  there are many others, but obviously we have a long way to go because the end goal is freedom and  we're not going to be there for as long as we're still having this conversation. 

Kelly Bron Johnson (03:29): 

I can say even for myself, cause I I'm one of the contributors to the book. When I looked back at what I  wrote, um, I had asked a lot of questions in my piece. You know, I asked about, uh, it was right about my  experience with, with racism and I'd asked, you know, was it racism or maybe it wasn't. And I looked at  it and I'm like, Oh, come on, duh. You know, and even for me to have that kind of realization about how  much certain things impacted me and how much racism has impacted me. So I mean the book in that  sense, I'm, I'm hoping it's been transformative for a lot of people who have read it and just to bring that 

awareness at least. But even for myself, it has brought a certain awareness within myself, um, and  having all those different perspectives. 

Kelly Bron Johnson (04:11): 

So, um, I hope you realize the, um, the impact that vote has had, you know, just from that one  Kickstarter idea and, and the, the way that it has hopefully started to pave the way for some change. At  least another thing that came out out of after all the weight of our dreams was the autistic people of  color fund. Um, would you like to talk about that and maybe we can, uh, see where people can donate  to that as well. 

Lydia X.Z. Brown (04:41): 

The autistic people of color funds, long name is the fund for community reparations, for autistic people  of colors, interdependence survival and empowerment. And that's actually a backronym if you know  what a backronym is, which is when you come up with what you want the acronym to say, usually a  word or a phrase, and you fill in the letters later, it's an imperfect backronym for fuck racism. 

Kelly Bron Johnson (05:06): 

That's the full name of the fund and the fund. Uh, I created it using a award money I'd received from the  American association of people with disabilities and launched it with the autistic woman and nonbinary  network, which had also published the anthology all the way to our dreams. And the goal of the fund  was to return resources, to autistic people of color or community that like many other negatively  racialized people who are at the intersections has routinely been exploited and had resources extracted  from us. And so the goal of the fund is twofold. Number one, to return resources to our community that  is redistributive justice. And number two, to be the people who are making the decisions from the  communities and for the communities, for which we, that we represent and to which we belong. And  that is mutual aid. So the people who have always made decisions about the fund have always been  autistic people of color. 

Lydia X.Z. Brown (06:01): 

For many years, our grant selection chair has been run a cake. You will own IO, who is one of the co editors of all the way of our dreams. Um, currently that role is filled by Sharon Davenport, who is AWN's  executive director and who is also a mixed race, autistic person. Um, um, right now, you know, we're  looking at a two and a half years of operation in which we have given out. We've now given out more  than $50,000 to different autistic people of color directly, and people use the money for anything, from  access to mental health care, to buy new clothes, covering rent, money, and utilities, escaping abusers,  being able to get baby clothes for their children. A lot of autistic parents supply, um, being able to cover  the gaps where food stamps or public assistance does not come through for being able to get art  supplies or get recording supplies, to be able to try to record something for the first time to basically  anything that you can possibly imagine. And the goal of the fund really is to be as open as possible. And  rather than gatekeeping or assuming that we know what is best for somebody, we want autistic people  of color to be able to receive direct material support when our community so often lacks the resources  to be able to provide or receive any of those kinds of support that are so widely available to basically  everybody else. 

Doug Blecher (07:26): 

And for people listening today that want to donate to the fund, how can they go and do that

Lydia X.Z. Brown (07:33): 

You can donate to the fund by going through our fiscal sponsor, our dedicated link is AWN P O C for autistic people of color AWN network dot or slash a P O C. 

Kelly Bron Johnson (07:55): 

Uh, Doug, I don't know if you mind, uh, but when Lydia was talking, it, it kind of set me up on, uh,  another idea, another question, if that's okay. 

Doug Blecher (08:02): 

Go for it. 

Kelly Bron Johnson (08:04): 

by jumping with something else. Um, you know, you've been, you've been working in advocacy for as  long as you know, since I discovered you, which was ages ago when my, when my first son was born, you  know? And so how do you, how do you deal with the inevitable burnout at some point? Like I find even  the work that I'm doing, you know, I work in accessibility and inclusion for my daily work and I've had to  kind of pull back and, um, just not expose myself to, to harm. 

Kelly Bron Johnson (08:35): 

I found I was exposing myself to, to repeated microaggressions, uh, because I had to continually prove  myself to, you know, execs in a workplace and talk about why diversity inclusion is important. And so,  you know, just to protect my own self and my, my own sanity, I've kind of stepped back a lot. Um, and I  know this is. 

Lydia X.Z. Brown (08:55): 

know burnout with advocacy is a, it's a common issue. So do you know, do you have tips for how to  prevent burnout or what kind of things that people should do? Um, and, you know, can you talk about  your experiences if you've experienced that there isn't really a way to prevent burnout? It is  unfortunately an evitable and rational response to the horrific conditions that we live and work under.  But what I can tell people is that burnout isn't necessarily permanent and that the effects of burnout can  be mitigated. 

Lydia X.Z. Brown (09:31): 

When you have people in your life who are supportive, who understand you and who are willing to  share the burden of doing work with you and not everyone has access to that. So people who do have  access to that, it is a gift and it is excellent and wonderful. And for folks who don't have access to that, it  is not a way of the universe telling you that you aren't worth that support, but rather you are worth it.  And you deserve so much more than this world is willing and able to offer you. My hope of course, is  that in the future, we'll live in a world where burnout is not the norm anymore, where burnout is no  longer inevitable. Were burnout is no longer something that we all expect to have to go through at some  point, because it is not sustainable and it is not 

Kelly Bron Johnson (10:22): 

And, you know, speaking with that about finding the people that, uh, are supportive to you and who  understands you. I know for me, when I found my community, that's played a huge role in just helping 

my, my self advocacy skills and learning from other people, um, as well as learning the correct language  to use. Uh, I didn't have a lot of language I needed to explain my own experiences. So for me,  community has been absolutely amazing. Um, so for you, what, what role has community played in your  life and, uh, and work. 

Lydia X.Z. Brown (10:59): 

I've found my home community politically among other and trans disabled people of color, not  specifically necessarily other autistic people of color. Although many times folks are also autistic, but  among queer and trans disabled people of color, because those are the folks who understand most  intuitively because of their own lived experience. 

Lydia X.Z. Brown (11:24): 

The intersections that I live at, those are the folks who will understand in different ways, coming from  their own places and experiences with other axes of marginality, as well as per privilege and power, the  ways in which I have lived through the world and dealt with oppression and multiple forms, and also the  ways in which I've experienced privilege in many ways, there are the people I'm around, who I don't  have to explain or justify myself, the people who understand where I'm coming from, how I am, who I  am and the people who understand what it is that I deal with on a daily basis. But beyond that, the idea  of community is fraught for me because community, the idea of it has sometimes meant a cult, a literal  cult, a metaphorical one. Sometimes the idea of community has been a lie or a deception people who  have claimed to be in community with me have been the people who have been the most abusive and  harmful toward me over many years. 

Lydia X.Z. Brown (12:26): 

And that's deeply damaging because the idea of community is supposed to be that we support and care  for one another, but more often there's so many people who seem really to want to care for themselves  and not necessarily to support other people, not just support people's work, but I mean, support people  

as people. And it is so hard to deal with that. And it is so hard to deal with when people think that you  are a person who is more of a public figure than a human, that you won't necessarily be affected by  things that you are more the idea of a person than you are an actual person or that you aren't really  even a human that is possible to connect with and what people will say to or about you and how people  relate to you or choose to think about relating to you can be very toxic. 

Lydia X.Z. Brown (13:16): 

It can be really damaging. And so the idea of community for me has always been one that has offered a  lot of promise, but hasn't always followed through. 

Kelly Bron Johnson (13:26): 

Yeah, that's, that's kind of, that's deep. And I, I see what you're saying to some extent, too. So my  experiences when, uh, when I had a, more of a leadership position, when I was part of the board of  autism Canada, and people kind of forgetting that you're human and just kind of throwing a whole  bunch of, of their own baggage at you has got nothing to do with you in the end. But it's like as if you  represent some sort of monolithic entity, uh, and you cease to be human. So I totally, I totally get that 

Doug Blecher (14:00):

Lydia wou were talking about multiple, um, you know, oppressed identities a little bit before. What,  what have been some things to kind of help you feel safe to embrace kind of all the different aspects of  yourself? 

Lydia X.Z. Brown (14:15): 

It's a long, hard journey because we all deal with internalized ableism and internalized racism and the  legacies of isolation, disruption, denial of access to ancestral and cultural heritages, or the social like  social structures and societal values that recognize and affirm us for who we are. And for me, like many  other people, it's been a very long journey. It can be very difficult to recognize and honor yourself when  there isn't much representation of people, you in the public sphere and when, even the spaces that are  supposed to be more progressive, let alone radical, still often fail to honor or represent people who are  like you. 

Doug Blecher (15:03): 

What, what do you think those spaces can do to better represent, um, people of color trans folks, um, in  those spaces? 

Lydia X.Z. Brown (15:14): 

There's just so much there. And I think the really important thing to understand is there is not a  checklist. There's no list of here's two things, five things and things. And if you just do those exact things,  then suddenly you're being supportive or whatever. It doesn't work like that. Doing real work of  solidarity and community building requires relationships. And those take time and intentionality, and  they take a willingness to take accountability and to invest and to offer of yourself, to build and sustain a  relationship with other people. And if we don't work on building and sustaining relationships with  people who are in our communities and in our movements that we're never going to get anywhere. 

Kelly Bron Johnson (16:02): 

Yeah. That's hard work. 

Doug Blecher (16:04): 

Lydia it's, it's definitely hard work, but is, is this something that like needs to be, people are need to be  working on day by day, hour by hour, minute by minute. How do you see that process working? 

Lydia X.Z. Brown (16:20): 

I mean, it's a lifelong process. It's one that you have to commit to and engage with constantly. And it's  not something that you can, I mean, without harming the process, divest or disengage from for weeks or  months or years at a time, but relationship building is hard work, no matter who it is with it is hard  work. If the person is your romantic partner, it is hard work if the person is your best friend, it is hard  work. If the person is your own child and it is hard work if the person is someone who is part of the  same activist or organizing community that you belong to, no matter who somebody is, relationship  building is hard fuckin work. 

Kelly Bron Johnson (17:10): 

How essential do you think it is to talk about race When you're talking about disability?

Lydia X.Z. Brown (17:15): 

You cannot talk about disability without talking about race. 

Lydia X.Z. Brown (17:19): 

It is impossible. Ableism and racism are so deeply interlinked, intertwined, interconnected, both  necessary for and dependent upon one another. You cannot talk about one without talking about the  other, all of the ways that we understand disability, disabledness and evilness under white supremacy  are all defined as against whiteness and the institution of white privilege. And so anything that we talk  about to do with disability is already a conversation about race. The problem is most white, disabled  people fail and refuse to recognize or understand that. And that failure is dangerous and deadly for  disabled people of color or disabled people who are negatively racialized in any way. 

Kelly Bron Johnson (18:11): 

Yeah. It's dangerous for our health, but also you can see that wall go up. I find I've had that experience  with a minute that you talk about race. It's like, there's a wall kind of. They're like, Oh, and it's like, they  kind of shut down. There's that white fragility that kind of comes out and, and, uh, they suddenly don't  want to talk to you or they don't want to talk about it. Or if you try to talk about trauma informed care  

and it's like, they're, they're like, Oh, we need to exit this right now. It's too uncomfortable. So I see that.  I see that all the time. And like you said, it's, it's a matter of life and death. For many, many cases. This is  heavier than I thought it was going to be. 

Kelly Bron Johnson (18:53): 

We could talk a bit about your work, Lydia. Um, we're talking about, you know, how the world right now  is focused on data and algorithms making critical decisions in our lives. So now that you're on the policy  council for the center of democracy and technology focused on disability rights and algorithmic, fairness  and justice, how do you see these algorithms impacting disabled folks? 

Lydia X.Z. Brown (19:19): 

Algorithms are everywhere in life right now, they're inesacapble technology and algorithmic technology  in particular has become ubiquitous. A couple of the main areas that my project work has focused on  include employment, benefits determinations, healthcare. And for me personally increased surveillance  and criminalization that arise out of algorithmic technology, which occurs in all of those areas. And more  we at the center for democracy and technology published a report in October on the use of algorithms  in benefits, determinations in the United States and litigation against the harms of those algorithmic  tools. 

Lydia X.Z. Brown (20:05): 

And just last week, we published a report on discriminatory use of AI in hiring affected disabled people.  When a computer is making an automated decision based on a set of data, that it has been trained on to  assume that people conform to certain norms of behavior or needs, or that people will function a  certain way. Then the algorithm will of course discriminate against disabled people, whether it is in  deciding how much support somebody needs to be at home instead of an institution, or whether it's  deciding whether someone should be advanced to the next stage of a hiring process for an interview, or  deciding whether or not a person should be flagged as potentially suspicious when taking a virtually  proctored test or whether they should be flagged as potentially suspicious when posting on social  media, near their school. So when all of those ways AI can lead to discriminatory action against disabled 

people that has devastating real-world consequences, denial of life sustaining care, refusal to provide  employment and therefore income to live off of protection of people's important health-related  information or freedom from arrest. 

Kelly Bron Johnson (21:26): 

Yep. That happened to my friend. I'm just trying to cross the border, uh, back into Canada from the U S  and they, you know, he's autistic. He was kind of nervous as many people are going to the border  anyway. And I don't know if it was AI, it might not have been AI, or it might've been, but it was, it was  obviously somebody looking at the camera and seeing his behavior, and they thought he was suspicious  and they, um, pulled him over and he was not allowed. I think they took away his nexus card and he was  not allowed to travel back and forth for a while on his, his employment was actually going to be us at  the time. So it kind of shows just how, especially the fact that when our AI is being programmed by  people with these biases and these biases already exist, it's just a, it's just a dangerous like landslide that  we're going down into. Um, and I think it's truly scary. I do see that there are benefits in technology for  sure, absolutely. A hundred percent, um, but taken the wrong way. It can be extremely scary. And life threatening 

Doug Blecher (22:33): 

Lydia, are there any, um, intersectional issues that you think would be important for us to talk about?  Um, as we kind of move forward with this podcast? 

Lydia X.Z. Brown (22:46): 

I'm really hopeful about the future work coming out from autistic people who live at the intersections.  But like I said, I think we have a really long journey ahead of us. And that's clearly true, whether it's in  your friend's experience, trying to cross the border just as a microcosm of one person's life, or whether  it's talking about the continued dearth of resources that are from our community and that are for our  community, they certainly exist, but there's not enough yet. And I, I just get excited every time I learn  about any other autistic people of color putting work into the world, whether they've been doing it for  years. And I've only recently realized that they are autistic or whether they are new altogether to the  disability advocacy world. 

Doug Blecher (23:38): 

Well, Lydia, we really appreciate your time. And we're just definitely, um, very honored that you, uh,  made your made, uh, enough your busy life and use some spoons on us today. Thanks so much. 

Lydia X.Z. Brown (23:54): 

Thank you again for having me. I'm so glad we could be part of this conversation.