Intersectionality Panel:
Race & Disability

Meet the Panelists | read the Transcript

Caitlin Cassaro: Hello everybody, welcome. I'm so excited to be presenting this panel that is the first time we've done something like this, and we're just so thrilled to have everyone here visiting us today.

I want to tell you a little bit about who we are. Extreme Kids & Crew is a nonprofit organization designed for children with disabilities and their families. We provide arts and play programs as a vehicle to build self-worth and self-confidence and to facilitate strong peer relationships for kids and their caregivers. As a result of COVID-19, we now provide all of our programs online and look forward to the day we can safely provide in-person programs once again. Extreme Kids strives to meet each child and caregiver where they're at and honor the full person and their lived experiences.

All of the families who attend our programs experience ableism; however, that discrimination is compounded for many because they live at the intersection of disability and race — and racism — and many other identities. The panel will directly speak about Black families with children with disabilities and those who are neurodivergent, in response to the most recent racism-based murders of Breonna Taylor and George Floyd — among many, many others — and the international outcry for change. We also take to heart the murders of Black and disabled people including Sandra Bland, Eric Garner, Freddie Gray, Tanisha Anderson, Deborah Danner, and again, among many many others.

At this point I'd like to turn it over to our moderator, Jerron Herman, professional dancer, disability advocate, and dear friend of Extreme Kids & Crew. Thank you.

Jerron Herman: Thank you Caitlin, so much. It's a real honor to be here. I'm Jerron Herman, as Caitlin said, I'm a Black disabled artist with cerebral palsy. I use he/him pronouns and I have short locks — I'll just do a visual description... I'm a dark skinned Black man, I have short locks, a mustache, and I'm wearing a taupe colored structured tee. I'm originally from the Bay Area and I'm now based in New York City.

Today we'll be focusing on the intersections of race and disability, as we witness and contend with the many factors that disproportionately affect Black disabled people. For all our viewers, welcome. We're glad you're here. To participate, we're going to use this chat box in Zoom for questions that our panelists will answer after I asked them a few other ones first. To our panelists, welcome. So happy that you're here. We have an assortment of folks that are dynamic and dynamic to the voice of this subject and I encourage you to join us in disability culture and not hide the access that we will be participating in.

There will be a five minute break between our two sections. In terms of access, we have ASL interpreters and then we also are going to be utilizing subtitles and captioning in the YouTube link that is provided in the live portion. A transcript will be available tomorrow on the Extreme Kids & Crew website.

Please prioritize your care and comfort, access workers in this Zoom call. Please let us, speakers, know to go slower or when you are switching interpreting and throughout I'll indicate who the question is directed toward. And with that, I think I'll begin asking each speaker to introduce themselves. So I'd like to invite Leroy Moore to begin us with a self-directed intro.

Leroy F. Moore, Jr.: Hello. This is Leroy Moore and I'm from Berkeley and wearing a brown striped button-down shirt. I have salt and pepper hair and I'm in my living room with pictures and you can see my lovely pink 3-wheel bike.

A little introduction about me. I was born in the coldest place on Earth and that's not the North Pole, it's Brooklyn, New York. Grew up in New York and Connecticut and moved to the Bay Area in '91. I've been here ever since. I'm a Black disabled activist, radical activist, artist. I've created many organizations, from Disability Advocates of Minorities organization in the 90s, to Sins Invalid with Patty Berne, to the National Black Disability Coalition with Jane Dunhamn, and Krip Hop Nation. And yeah, that's me.

Jerron: Thank you, so good to have you. ChrisTiana, welcome and let us know about you.

ChrisTiana ObeySumner: Hello, my name is ChrisTiana ObeySumner, my pronouns are they/them. I am a Black person, and Afro-indigenous as well. My family's lineage comes from the Obeah by the way of the Igbo. I am also multiply disabled, as well as autistic and neurodivergent. I'm a community activist here in Seattle and this is the seventh state I've lived [in]. I've been doing activism since I was a youth, especially around Black folks who are disabled and neurodivergent and just living and surviving their lives. I also founded a social equity consulting company called Epiphanies of Equity LLC, where we work with organizations, non-profits, governments and community groups around how to be intersectional and equitable with other humans. I am a medium-skinned Black person, femme presenting, with a black sweater and a multicolored head wrap and black secretary glasses. I am in my den and I have a lot of books which I use to stim and read. You also may see a small fluffy dog running around in the background.

Jerron: Thank you so much, ChrisTiana. Hello Tiffany!

Tiffany Hammond: Hi. I'm Tiffany Hammond, pronouns she/her. I'm an autistic self-advocate, I'm a writer, I have two autistic children. I live in Texas. I guess I would say that my work is rooted in challenging the perception of autism as a lifelong burden, giving a face to this diagnosis that isn't often represented. My aim is to create a community that explores intersectionality, inspires thought leaders through storytelling, education and critical discourse. Right now, I help other groups teach their parents on race and disability. I am in my children's bedroom. I wear glasses, my hair is black, shoulder-length. I have a tan dress on. I stim a lot with my hands. I have a weighted stuffed dog in my lap to kind of try to help keep me calm. And that's it.

Jerron: Cool, thank you. D'Arcee, round us out with this fabulous panel.

D'Arcee Charington Neal: Thank you very much, Jerron. Hi everybody, my name is D'Arcee Charington Neal. I am a second-year PhD student in English and disability studies at The Ohio State University and I do a lot of work at the intersection of Black disability, ableism and digital media. And I am also a consultant. The last company I work with was for the World Bank, but I've also worked for Uber and Bank of America and a lot of nonprofits, where basically I come in and talk to them about the concept of ableism and how it works with their businesses, and basically how they can avoid that. And yeah, I'm just really happy to be here. I am a dark-skinned Black man. I use he/them pronouns and I am also wearing glasses, as well as lovely different shades of eyeshadow and a frosted lipstick.

Jerron: Thank you so much, D'Arcee. So that is a perfect segue into what I believe is a critical conversation about care and joy. We talked a lot about where we are, what our spaces are and some of the things that possibly we use to sustain, but what would be the things that you would characterize as giving you joy? It could be in 2020, it could be joy in life, it could be within your family. However you would like to answer. I'd like to start with D'Arcee.

D'Arcee: Okay, joy. So I think the most recent thing probably that is giving me joy is... I mean, I can still remember... So the very last thing I was doing two days before COVID struck was I was at a conference in New Orleans, which is my favorite city on Earth to eat, and I was stuffing myself silly with char-grilled oysters by the handful and it was fabulous. And so, I really look forward to getting to go back and do that again, but I'm just really glad that that was... I mean, if I had known this was coming I probably would have eaten a few more. But as far as last memories go, that was a really good one, and I look forward to being able to return to it eventually.

Jerron: Tiffany, what gives you joy?

Tiffany: Honestly, right now writing and living my most authentic self, when I'm just free to be whoever I want to be that day, just not having to mask or pretend to fit in or be normal or anything, just to be myself and just enjoy who I am and enjoy myself, my family. So writing, soaking in nature. I'm drawn to nature even though it doesn't love me back much. But I just enjoy inhaling life and enjoying who I am, and that's the biggest thing I enjoy, just to be who I am without strings and not have anyone question me about that. Just go a day without someone being like, why are you doing that, or what's with your hands, what's with your voice, why aren't you talking today, you talked yesterday. You know? Just wanting to just be who I am. That brings me the greatest strength.

Jerron: Thank you for that. Yeah, that really resonates with me on two levels. One, writing, it feels disembodied, like it feels like I don't have to be in my body as much and so therefore it's like, I get a little bit more out of my... I don't know, it's strange. I guess there's a way in which writing allows me to say things that aren't being read on me. Nature, you're hitting me with that. And then not being around questions for a day, like that is so real.

ChrisTiana, what is something that brings you joy, or what is something that's bringing you joy?

ChrisTiana: Well, right now, in the moment, I can't stop smiling and being like in this panel with all these amazing black people. This is just amazing. In Seattle, this is in short supply so I'm just like so happy to see you all this moment in here. Recently, I have been trying to force myself to take time to eat, like to make food at home and to eat good food. And so I just found some smoked neck bones and I'm going to make those this weekend. And I'm going to read some books, I'm trying to do book reviews and stuff like that, like "I read this book so you don't have to" sort of stuff, because I really like reading. But also I had a service animal letter for, like, years, and so finally finding my service animal. He's 12 weeks old and he's a Yorkie and his name is Barkley. It's been really great having Barkley because I think that it's different than... Like Tiffany, I have a ton of stuffed animals, like a ton of weighted stuffed animals too, and I've had these stuffed animals forever. But this is moving, it's emoting. So it's also been helping to not be stuck in the house, because I finally have... I'm married but my partner is an essential worker so he has to leave, but tomorrow is our five year wedding anniversary, which I'm just like... how did that even happen? So that's giving me joy too, so I'm excited.

Jerron: Wow, thank you. And I want to pause just a little bit to give the interpreters a chance to switch over if they need. I'd also like to introduce Rodney and Aisha who are our two ASL interpreters today.

First, I'm sorry, I'm sorry, I have to talk a little bit to ChrisTiana about some smoked neck bones and how that just... I really felt that, so thank you for that. [laughs] Leroy, what is giving Leroy Moore, Jr. some joy?

Leroy: Yeah, I think right now, and it's been ongoing, is getting outside of "I" and getting into "we." My work brings me all over the globe, I just was talking to Black and brown disabled people in South Africa, Australia, Brazil. You know, it's wonderful that we are worldwide, that we're connecting, we're building things, you know? So that gives me a lot of joy, to see that we're international. That gives me joy. Of course my nephews. I have four nephews and two nieces, so it gives me joy to be around them. My nephews were here for a couple weeks, so that gives me joy. Just my life work. I don't call it a 9-to-5. It's what I do, and I love it.

Jerron: I had the extreme pleasure of kind of witnessing a little bit of the growing Black disabled music anthology you're doing, in terms of identifying Black disabled musicians from yesteryear and throughout history, and just noting that we've been here. Similarly, what you just said about folks all around the globe are... it's really heartening to see who's there. I similarly feel that when I look back and see that we've always been there and we've always been a part of the conversation. So really want to thank you for that scholarship that you're adding to the canon. It's really groundbreaking.

So, next question. Mia Mingus, writer, writes: "Ableism is connected to all of our struggles because it undergirds notions of whose bodies are considered valuable, desirable and disposable." Would you mind sharing with us your reaction to this quote and how does this inform your work? We'll start with ChrisTiana.

ChrisTiana: The quick 30 second history of what this quote means to me is, how I came into this work, similarly to Leroy, was... I'm trying so hard not to fan-person now because I've been following Leroy forever. Similar to Leroy, this has been my life's work. I started getting into this sort of space as a child, especially as a Black autistic child, there's both the masking and the code switching that you're expected to perform. So on top of saying, you're not playing right with the other kids, it's also like, you're acting too grown, or something like that. So there's these conflicting messages around you're not acting childlike enough but you're also not acting enough like an adult, and then you're not following these constructs of what an expectation is of how you're supposed to be. And it's always just been like, but why though? And so my entire life has just been me asking why? Which as you can especially think of, especially things like ABA, got me in trouble. But I think it's always been like, why do we have to do it? Like, we're making up these rules. We're making up these expectations. And that's the truth in reality, right. Because reality is that these constructs — we as society coming together and saying, this is what this means — it's killing people. Full stop, all the way to the end. We don't even have to sugarcoat. People are dying because of social constructs and expectation bias. So ableism and intersection with anti-Blackness misogynoir, classism, environmental racism...

Right now, I have an uncle in the hospital with not just a disability, but also exacerbation of disability because of environmental racism. All of these things come together in this horrible stew of oppression, marginalization, exploitation and death. And I think we're seeing in 2020, as the toxicity of 600 plus years, if not... even if I was going to take it from the Civil Rights Act, 57 years minimum, that's coming up through these fissures, and it's even more toxifying. I feel like in my space, leading with a conversation on ableism and how the body is treated, how the body is regarded, how the body is classified based on these constructs, these harmful, genocidal constructs of productivity or wholeness. It's part of this puzzle of why do humans humans? Why? And what exactly is the anchor that we need to cut so that we can move away from these... or can we? Are we going into a sort of Afro-pessimism mindset that there is no way? But I think to the last question, perhaps hope without optimism, that if we can construct an inequitable society, then maybe we can dismantle and reconstruct an equitable one. But what does that look like?

What is important to me, too, is looking back to my ancestry and my heritage, especially as an Obeah, and my story of having a spiritual and an ancestral community of people who saw me as someone who's important, someone who spoke to our ancestors, someone who had these gifts that were passed down, someone who was not pathologized. And then as I go through the public school system, through the school to institutionalization pipeline, being seen from Western society as a person to be stowed away, never to see the light of day, and the fight of having to get out of that space, I think shows the extent to which there's so much dissonance in our society that I think we really need to take — and when I say we, I mean the collective we, not us — but I think we need to really consider the ways in which, while we have time in terms of other crises like climate disaster crises and things like that, while we have time to consider what does it really truly mean to be in society with each other equitably in a way that we can just be able to live and survive.

Jerron: Yes. Leroy, how might you respond to Mia and this quote?

Leroy: Can you say the quote again?

Jerron: "Ableism is connected to all of our struggles because it undergirds notions of whose bodies are considered valuable, desirable and disposable."

Leroy: I would like other people to recognize that. People with disabilities recognize that, but outside of our group, people don't recognize it. Black scholars that have PhDs, they're idiots. I'm just being honest. How can you have a PhD and don't recognize ableism? So yeah, we recognize it, we're doing the work, but it can't be only on us. It has to be shared amongst other people and I think that's why the Black disability movement has to come back home, and it's hard to come back home because there's a lot of open wounds. Because the Black community never got the education it needed to around disability. So because of that, a lot of Black people don't work in Black organizations and don't come home to the Black community. So I think, you know, that other people need to do this work so we can fully live in that quote. It's funny, we talk about intersectionality and, look, I have a radical view about that, intersectionality today. Because I saw it when I was growing up, I saw it in my father's Black Panther meetings. So it's like, why are we doing this again? It should be one on one right now. But yeah, I think our Black community and other people that are in professional roles need to get on board or we just need to leave them behind and just do our work. Because, and I hate to say it, but I just don't have time.

Jerron: Just doing our work. That resonates. D'Arcee, how might you respond to this, this idea that ableism is connected to all of our struggles?

D'Arcee: Sure. So, to Leroy's point, I do think that the academy is directly responsible for a lot of this violence, because it holds itself up as a place that is perpetually supposed to be the pinnacle of where knowledge is generated, and it is not doing that. I mean, that's literally the work that I do and so I got into the work, the research that I'm doing. To ChrisTiana's point, people often use Afro-pessimism as a way to kind of explain, you know, what is going on with the Black body. For those of you who aren't familiar, Afro-pessimism basically is the understanding that pain and devastation is what generates creativity. It's pain and trauma that generates the creativity and the impact that Black people have on the planet. But I don't necessarily dwell on that. I look at the opposite end of the spectrum, which is Afro-futurism, which is the opposite. It is the idea that Black life, pain and trauma can in fact create life. And that Black people are at the center. And so I look at how disability affects Afrofuturism and, to Leroy's point, how Afrofuturism does not consider "currently." It does not consider disability hardly at all. I scoured Black Panther, the multiple times that I saw it, and did not see one visibly disabled person at all in any of the viewings of that movie, and I love it to death. I have it tattooed on my body.

So my point is, I think that ableism in relation to Black communities is incredibly important, and it's the reason why I'm trying to coin this word I call “Afro-phantasm,” which is essentially the idea that in Black communities, disabled people are like ghosts. We exist, but only in the barest imagination of people's ideas of what they think that we are. And with that understanding of it, once you know a thing, you can deal with it. Once you name a thing, you can actually start to work on it. But we need to get to the naming. And I think that's what Mia was trying to really address in this particular quote, the idea that you have to name the problem and the problem is ableism.

Jerron: Wow. What I'm hearing from that is a little bit is this needing to make flesh what is us, because I think that there's a way that if you can pathologize, as ChrisTiana brought up, or if you can categorize — falsely categorize, in the academy — who we are and not give us a, even in the media, give us a separate identity, there's no way in which we become full people with layers. And then of course, there's always a binary, that's what I'm thinking or hearing or what people usually go to. Tiffany, would you round us out in this?

Tiffany: Yeah. Can you repeat the quote again?

Jerron: Certainly. "Ableism is connected to all of our struggles because it undergirds notions of whose bodies are considered valuable, desirable and disposable."

Tiffany: I guess my first reaction would be that I agree with it, I find it accurate. I wonder if it goes far enough. I'm not sure. I feel like ableism is connected to other systems of oppression because it is a tool of colonization, capitalism, and racism, and as long as colonization, capitalism, and racism exist, so will ableism. But I guess I feel like it is responsible for determining who is valuable, who is desirable, who is disposable. I think that, for a lot of us, I think that we think of ableism and racism as being these two separate competing systems of oppression, and I think to think of it that way denies our experiences as Black disabled people. Ableism undervalues our bodies and it doesn't really think that much of our minds. But when you boil it down, I think that it is a tool of racism, I think it's always been linked with racism. I feel like, historically speaking, race and disability — or anti-Blackness and disability — gave life or gave rise to much of the ableism that we see today, much of the ableist language that we see today. Many of us, like myself, we were born disabled, but also how we were treated, how we lived, environmental racism, these poor conditions that we were subjected to live in — they also create disability in addition to being born disabled.

I think that the concept of disability was used to justify discrimination against us by assigning disability to us. I'm trying to keep remembering her quote in my head and just kind of wrap it out and pull it out.

Jerron: I can repeat it. "Ableism is connected to all of our struggles because it undergirds notions of whose bodies are considered valuable, desirable and disposable."

Tiffany: Historically, poor conditions and systemic racism, I think that that created an environment for the assignment of disability to Black bodies in addition to those who were born disabled. I think that also contributed to the system of ableism that we see today. In order for us to dismantle ableism, we will have to also dismantle racism, and I don't think that they're completely separate systems that operate on different tracks. I think they're always linked, they've always been linked. For a lot of people, they think of disability as this isolated, single-issue. It's not often that people connect disability to something else. They don't often connect my disability with being black. Like D'Arcee said, it's like we're invisible here. Black justice movements do not always think of people with disabilities, we're just not in the conversation pretty much at all.

Overall, I think that, for me, for ChrisTiana, I think that for us ableism doesn't look the same for me or her for anyone else on this panel. It's complicated by our class, our gender, our diagnosis, how severe, the severity of our disabilities. I feel like I exist as the sum of my parts and I feel like my work is reflective of that and I remain centered in all of who I am and I reserve the right to bounce freely between all those identities I claim, that I know, that I love, and take the time to build these different relationships with other communities. I've never heard that quote before, it's in my head and I love it. I can't even think of anything else to add because I really need to read more on this Mia person.

Jerron: Mia's got some scholarship for sure.

Tiffany: That's the first time I've heard that quote, and I need to know more about that, I need to learn more.

Jerron: You gave us a quote already, when you said that ableism deals more with our body than our mind. That's something that I will definitely take with me. I didn't want to interrupt.

Tiffany: It's one thing when— I have a disability that you can't see. If I'm not like having this really big day where I'm just doing a lot of stimming or anything, it's just you cannot see that I'm autistic at all. Nobody thinks about [the fact] that this is in my head, it's a neurodevelopmental disorder and nobody can see that. So when they find out, they attach and assign my worth to how they think that I can perform, and then my value drops. I'm not as useful to them, so they undervalue — you know, what they would with someone with a physical disability, they'll undervalue their bodies — they undervalue my mind. I am really loving that quote so I've got to cut that out and keep it.

Jerron: We'll definitely come back to that concept. I just wanted to honor a moment and say, just a reminder that ChrisTiana's pronouns are they and them.

Tiffany: Oh, I'm sorry!

Jerron: No, I just wanted to put that out there. I definitely do come through that as well. Leroy, did you have a question or another thought around this idea, before we round out for a five minute break?

Leroy: I just wanted to add that Krip Hop came up with the term called Black ableism, and Black ableism is so heavy in the Black community. The reason why it's still there is that we never had this chance to, once again, educate, from our harsh teachings under slavery, because ableism was taught to us by white slaves. I'm just being honest. And because of that, we never had a chance to really re-educate ourselves by Black disabled people. So because of that, Black ableism is so deep in the Black community, because there's not a place to reeducate the Black community, and that's why the International Black Disability Coalition is there. I just want to say that, the term Black ableism really needs to studied by Black scholars and our Black community, so, once again, Black disabled people can come home, because we really can't now.

Jerron: Yeah, thank you so much for that. I agree with you, and back to what Tiffany was saying about the... we're heavily in this realm of productivity, where Black bodies are usually perceived as being productive or giving something to the state, the industry, the home, the family. We are producing constantly, and our bodies are only as useful as we are productive. That's what's being revealed to us, or being brought back to us.

Leroy: I want to add, just quickly, in the Black community, this is why you're seeing two things: you get services, or you overcome it. No wonder ableism is still there, because it's looked [at] by two avenues, and both avenues don't take in the rich history of Black disabled people. You need to have a view around Black disabled— that's politically, culturally, artistically, historically— it's just not there. It's all about getting services or overcoming.

Jerron: Yeah. We are going to take a five minute break, so people watching, panelists, take your time. We will be back at 1:20. It's 1:14, so we'll see you back. Thank you all. Caitlin has also been putting up links in the chat box, I don't know if we're able to see them via YouTube Live, I'm not sure about that. But nevertheless, Krip Hop Nation, leavingevidence.wordpress.com and then blackdisability.org are some of them that we've seen. Thank you all, I'll see you in 5.

--INTERMISSION--

Jerron: Hello, everyone. This is Jerron. I just wanted to encourage panelists to return, and that we return to this rousing conversation. I'd also just like to acknowledge that I'm drinking apple juice now. [laughs]

Welcome back, everyone. I think even just that five minute break is in and of itself a reframing of how Zoom meetings I hope will go in the future, as we start to undo systems and undo priority/productivity slogs. Leroy you've been bringing academia and scholarship to task a little bit, with its kind of defunct inclusion of people with disabilities, also the Black disabled movement. Can you go a little bit deeper into this political moment that we're in and frame for us how BLM protests, the pandemic, even economic crisis, how that has maybe increased the stakes of Black people with disabilities, and even how maybe we got here?

Leroy: [laughs] It's a lot.

Jerron: I know, I'm sorry! [laughs]

Leroy: I think at this moment, it's different because it's touching everybody. I put on Facebook a couple days ago, when it touches white people, then things start to change. Because Black people have been here before — of course not in a pandemic, but we saw Hurricane Katrina, we saw the earthquake in Puerto Rico, police brutality is nothing new, I've been protesting against it since 1984, so it's nothing new. But what's different today is that everybody's feeling. And so when white people in power feel it, things change. We saw that. All of a sudden, the government had money to do everything. All of a sudden we can work from home. People with disabilities were asking for that for centuries. The question is, what are we going to do in this moment?

I gotta put it out there again: I don't need a solidarity letter, a statement, we don't need that. We did that with Michael Brown, somebody that's gone. We don't need a hashtag movement, that's gone. I'm more supportive of Hands Up, Don't Shoot than BLM, to be honest. Because Hands Up, Don't Shoot has been there on the ground way before BLM. I say that because we need more than just murals and hashtags. This is the moment to change structures, to change it institutionally. So what does that mean? It means pilot programs and disability organizations that deal with state violence. Sometimes I look at disability organizations and I'm just like, wow, they're so outdated. Especially being Black, like, wow. In other communities, to stay still that long, they will need that funding. I look at this time as a chance for Black disabled people to push institutions, it's a chance where finally the National Black Disability Coalition is getting support. This is a time to really do structural work, it’s not a time for tinkering on the edges. I think vocal anti-police brutality activists pushed — and I'm just being honest — they pushed BLM to get to this point. Because a lot of people that I know, from POOR Magazine to Berkeley Copwatch, have been asking for defunding the police for decades. It's nothing new. So at this moment, it's more about making institutional change that will last for generations, and if we don't do that now, then I don't know when we're going to do it.

Jerron: Wow, yeah. Tiffany, as we strive to get to institutional change, really strive to get to abolition in our lifetime, what skills are necessary for our Black kids with disabilities to have or to learn, given that they are navigating systems of power and "care"?

Tiffany: That was a mouthful. Can you repeat the question?

Jerron: Yeah, what skills are important for Black kids with disabilities to learn or to have when they're navigating these systems?

Tiffany: I would say first, and this is coming from a parent perspective—

Jerron: Which we need! We've got some parents in the audience...

Tiffany: As parents, especially Black parents, I think the first thing that they need to do is inform their child they're disabled in the first place. I have met so many parents and so many disabled children and they don't even know they're disabled. I do not know how that helps them in the long term if the parents don't tell him because they're scared it might hurt the child's feelings or make it harder for them in life. But they really need to know that they're disabled, they need to know how to inform others that they have a disability. They need a basic literacy of what their disability is, what it looks like, and then they can begin to practice different behaviors that can keep them safe, minimize harm and abuse, and then later on, when they're older, they can learn how to make decisions that would also keep them safe. But they've got to know that they're disabled. They have to know that.

I'm not going to lie, this question kind of bothers me a little bit. It feels like the burden is placed on us to prevent us from being mistreated or abused or hurt or killed. It's on us to prevent our own abuse, to prevent our own death. We don't have the power here, you know, and yet all of the responsibility is placed on our shoulders. There there's a lot of things that I do myself to keep myself safe in certain situations, like knowing my disability, establishing relationships with other people so that, if I am in a bind, they can help me out when I lose my voice, or lose my ability to speak, they can step in and help me or explain to people what my triggers are. I can say all day to my children, you're in the store, don't touch anything, don't put your hands in your pocket, don't fidget. And if your cube — because I keep my fidget cubes in my pocket — if it's in your pocket, then ask the officer or the person, can you calmly get it. You can run through these lists of scripts and scenarios and tips and tricks and strategies and still— I was still almost arrested. My nine year-old was almost arrested at school for having a meltdown. My husband was almost shot. I was almost shot. And I have a disability in which I am competent enough to know that I need to try to behave in a certain way so that I don't have harm come to me, but I am also frequently assaulted by the environment, in which my body doesn't always react in the way that I want it to. If it's too loud, I might bolt somewhere. If it's too noisy, I might shut down. A lot of times, most people don't know what to do with that. We live in compliance-centric society and our bodies don't always behave or react in the way that they want us to.

I could sit here all day and tell you all what you should do, what you should do, and at the end of the day, would it even matter, would it even help to have us go through all of that, to have us modify our behavior so that we don't get mistreated? How do you do that when our skin itself is a provocation? I live in West Texas and I can go a week without seeing another black person, in a town that has 100,000 people and five colleges. I don't know how that's possible, but it is, and I have been followed in stores, I have been threatened [by] the police. This is all doing everything that I'm supposed to do, or that I have been taught to do since I was old enough to read, or old enough to walk, really. How do you protect yourself from that? As parents, yes, you can do that, you can teach your children all these tips, strategies, scripts, you could play it out, you can a roleplay, you can do all that, but ultimately, at the same time, they need to be actively engaged in their community from the local level on up and try to work on these systems that make it so hard for us to just live as we are. Preparing your children to operate with supremacist systems, yes we have to. But also, work on dismantling these systems that make it hard for us to navigate them in the first place. Sit in on your school, just get involved, period. A lot of these incidents that occur, that happen to us, the ones that don't even result in our death or anything, it's simply because of who we are. We're not doing anything wrong. We're just existing. We're just being, you know? And we're getting hit from all angles, so I want to, yes, give them the skills they need to help them minimize the risk of harm, but also fight against these systems that seek to harm them in the first place. Rethink public safety, advocate for decreasing the amount of interactions that we have with law enforcement. Police shouldn't be there for every single thing. Push for funds to be redirected to support services and mental health programs, things like that. So yes, help your children with skill-building, but also get involved in your community. Don't just sit back. Extend it beyond the house, let them know that you are here and you won't stand for any of this. You want change, you want real change.

Jerron: This is really interesting because if we're talking about how to get children involved or even kids involved with their own care and safety, one of the places we think of, because of pathologizing and medicalizing, we would think that us knowing out disability, us being ensconced in medical fields, would give us a little bit better foothold in that. But ChrisTiana, could you talk to us a little bit about maybe where the skill-building correlates with the medical system, and possibly how Black kids with disabilities can advocate for themselves in those spaces? Thanks Tiffany.

ChrisTiana: So I'm going to go out on a limb and just go straight abolitionist with this. To build off of what Tiffany said, when I was thinking about this question, I will say this: there is none, because the medical system is a system that was created to kill us. In order to be able to advocate and navigate the medical system, we would not only have to take Tiffany's advice in telling black children that they're disabled; we also have to teach Black children how to, through advocacy and through radical critical thought, how to do the both-and of dismantling the plane while also rebuilding the plane while flying it. If we look at the history of Western medicine, it was literally created through the brutalization and destruction of particularly Black disabled bodies, and the bodies of folks who have been constructed and characterized as the "other," and seen as "disposable" and for use to "further under scientific understanding" — all this is in quotes, by the way — for the benefit of the people who have been constructed as the litmus, primarily white Northwestern, white Protestant men, who own things, ill-begotten nonetheless. 

One of the things that helped me in my space was not just my mom telling me I was disabled, my mom explaining our entire family is disabled because of chronic illness and things like that, but explaining to me the delineation between my chronic disabilities — me being autistic — and psychiatric disabilities, explaining it's psychiatric disabilities as it is perceived by Western society, and as it is perceived in our heritage and ancestral practice. And then, in that, again, not putting the onus on me, not even putting necessarily the onus on the Black community, putting the onus onto the systems and institutions and actors in those systems as to why I am being brutalized in the moment. They would call my mom, 'Oh Ms. Obey, your child is having a behavioral issue with the school,' or 'Oh Ms. Obey, we're calling the DARE officer to take your child in for a tox screen for stimming in class' essentially. And instead of my mom saying, oh okay, my mom was like, 'oh no no no, wait a minute. What's going on in your classroom that is making it difficult for my child to be able to succeed? What is going on with this teacher that my child's in the same IEP classroom with each other white kids and they're not getting picked up by the DARE officers? What's going on with your doctor that you're giving my child a diagnosis that I know is statistically given to Black children or Black folks — especially Black femme presenting people — specifically to be put on their records to continue to gaslight and diminish the rest of their symptoms? What is going on with you? You're the one that needs to change or just go away altogether.’ My mom has tried to bring in some of those other healing practices. My mom would be like, 'I want to take you to the doctor,' but she would explain, 'if we take you to the doctor, the doctor is going to ask you these questions, and I want you to think about why the doctor is asking you these questions. Always question why. Always ask the doctor for your medical records. Once a year, you have a right to see it. You have a right to not give your pee to the DARE officer. If they try, you call me.' I think these sorts of things are really really important to teach.

I kind of feel, in a lot of ways, like we're fish in toxic water, that we have a lot of superconscious pieces where it's so blatant in our face that we just become desensitized and we don't see it anymore. And I think that there's a lot of ways to what folks have been saying that, yes, we in the Black community have been conditioned and socialized to not only invisibleize disability, like D'Arcee was saying, but also to pathologize it or to other it, or to 'say Jesus and it's done' sort of mindset. And I think that there is sort of an inter-community piece, where we not only have to question why we have attributed such Euro-Christian values to our body-minds, but also why we continue to perpetuate and sustain and protect systems and policies and institutions — which are all products of people, by the way — that is meant to kill us and brutalize us and sterilize us, if not explicitly, then implicitly and insidiously. So think that what's difficult about the medical system for me is that it is literally created to our detriment.

My background before I became a consultant and how I came into being a consultant, it was not planned. I was going to school to be a social existential psychologist. I wanted to work with other Black folks with disabilities and talk about the extent to which their disabilities may have upstreamed impetus or origins from social, political, systemic, historical oppression. Violence, genocide, exploitation. You tell a Black child from the time they're in preschool that they're bad, that they're criminals, that they have behavioral issues, that they don't belong, that they're not doing these things, and then you want to wonder why, by the time they're 12 and you want to diagnose them with oppositional defiant disorder, why they're in this space. It's because we have conditioned this child to see themselves not just as the other for themselves, but also as an other that needs to be altered and acculturated into a completely different system that is meant for their demise. I don't think that there is a way to really give a straightforward answer in how to navigate the medical system within the system, unless those answers are how to navigate a system that is meant to kill you, and how to dismantle it while you are advocating for your survival and safety. I think it is no different than teaching kids how to do safe mountaineering and not to get eaten by a mountain lion. I think it's no different than teaching kids chemical safety and what under the sink you're not supposed to put in your mouth. I don't think it's any different than teaching kids environmental safety or emergency planning, and how to protect yourself during a tornado. I think that in this larger existential piece, we also have to hold that we are in a very interesting intersection of time where there are a lot of crises coming together in this powder keg that inevitably is going to explode, if it hasn't already started a slow explosion already.

So I think if there's anything, what we need to teach are those principles of disability justice or DisCrit [disability studies and critical race theory], but we really have to bring in, to what Leroy Moore Jr. said, this point of coming home. What does it mean to be in community? What does it mean to be collective? What does it mean to be interdependent? What does it mean to have our ancestral medicine? What does it mean to heal with each other? What does that mean in the future, proactively, away from this space? Because I don't think that where we are — any of the systems or foundations that we have — is sustainable.

And the last thing I will say is even if we were going to advocate within the system, we also have to acknowledge, again, that policies not only are products of people, but that the biggest confounding variable to any equity initiative is people. So even if we were to create the most beautifully written policy, that it was written down to the technical T, that people then have to read the policy with their mind, and then I have to interpret the policy, and then they have to implement the policy, and just that small piece there is where everything is going to go awry. It has. So if the Civil Rights Act should have mattered at all, we are 57 years into what should have been a community that was supposed to start to dismantle some of these things. We're supposed to be 30 years in, from the Americans with Disabilities Act, from having equal access. Obviously, policy change is not enough. We have to address the fact that humans human, and in that humaning, we characterize, we classify, we construct, and we take this sort of soup of what we have brought together and we use it to disproportionately allocate resources or power, and to further marginalize the bonds in the margins, certain groups of people, which changes fluidly. And what I'm saying is that as we feel ourselves in these spaces, that it is time to storm the Bastille.

Jerron: Really quickly, ChrisTiana, how old were you when your mother started to impart these things into you? Like in terms of, 'don't give your pee to DARE,' or...

ChrisTiana: Probably as long as I can remember. Before I went to kindergarten. My grandma was also a Black Panther, so I was also taught a lot of things from my grandma as well, a lot of stories on who not to trust. And here in Seattle, we did a lot of police abolition, and I argued, because they're like, 'oh let's bring social workers in,' and I'm like... [laughs] About social work... You know, the first message my mom told me was about what to do if I saw a police officer. The second lesson my mom taught me was about what to say to the social worker. There are obviously these intersecting systems that are meant to kill us. I do think that it's important for Black folks to find a way to have our liberation and our space. I do agree — and of course, I share that with my grandma being Black Panther — but I do agree with the principles of the Black Panthers in that we really do need to come together. This is the time, in particular, for us to come together and I think that it's important for us to consider ways in how to do that. Part of that is allowing ourselves to space to process and grieve what we thought was going to be this "American Dream," even though all of the history and the materials leading up to this has shown that it was never meant for us. I mean, the Emancipation Proclamation was just that, a proclamation, and even then, you try to ship us off to Liberia, right? So it's not really meant for us. So either, in true abolitionist form, we're going to demand and collectively co-create what a society looks like for us, which needs to be led not just by Black folks, but also in partnership or cross-movement solidarity with indigenous sovereignty. But we also have to find a way to address the fact that humans humans.

The last thing I'll say really quick is that I do see this constructing as a human thing. There's this Fairly OddParents episode where Timmy Turner is tired of being bullied, especially by the Gilbert Gottfried character. And he asked Cosmo and Wanda that everyone would look the same so that he wouldn't get bullied anymore by the way that he looks. But once everyone was turned to gray blobs, the Gilbert Gottfried character just started to construct and characterize based on who was the greyest and the blobbiest. When there were three popes in Europe, the way that they would try to argue who was the most pious was coming together, opening up their robes, and showing how much body lice that they had, because the person with the most covered in body lice was the most pious. We as humans tend to do this. Right now, the conversation is around anti-Blackness and ableism, racialized ableism, classism, climate disaster, but even if we were to pull out of the apocalypse, there's going to be something else, so we need to find what the thing is, that existential thing, that leads us to do this, and I think there is where we will start to disrupt that upstream flow into what has been, historically, one of the biggest genocides of our time.

Jerron: Thank you. And we can give the ASL interpreters a moment to switch or pause. Please go follow all of our panelists on all of their social medias and websites and all to continue this conversation. We are getting to that time, my friends, so I just wanted to, as a point of thinking about how we're going to move into this next section, I don't want to put any constraints, but maybe some succinct answers to these Q&A questions. D'Arcee, can you start us off with this idea? There is a question about what is an appropriate age of informing kids of... when they should know about their disability.

D'Arcee: That's a really good question. I think that would be determined by your child. I would love to give a standard age. I would say that there are probably developmental moments, but I think that every child is a little different. I would say somewhere in between... I mean, I was eight when my parents had that discussion with me, and it didn't even come from them. It came from the white daughter of a next-door neighbor with whom I was playing in the sandbox. And she was like, you know, 'you're crippled.' And I had no idea. It didn't hurt my feelings because I didn't know what she was talking about. So then I went home and told my mother what she said, and my mother was absolutely furious, and went to that girl's house, knocked on the door, and told her mother, 'you need to watch how you talk to my child.' And of course, the woman was like, 'what?' She didn't know either.

So I would say, just in really quick response to both ChrisTiana and Leroy, you know, for those of us whose parents are not connected to the Black Panthers, like that's something we don't have. Regular degular Black people. My mother was overwhelmed. She was completely overwhelmed, overpowered, and the tidal wave overtook her of not knowing anything about Black disability, what to do, and I suffered as a response. The majority of my life since then has been reconstructing how to deal with that, but I would say that, in quick response, you do need to do it, it is an essential thing that you definitely need to do, and I'd say the earlier the better. Because once people get over the initial shock of, 'What? I'm not like everybody?' You already knew you weren't like everybody in the beginning. Look at your skin. You already are not like everybody, so once you get over that part, you can just add something else. And the faster people do that, the quicker they can learn about the power that is in response to that identity.

Jerron: Leroy, what do you wish parents understood about being a disabled person or being a disabled actor or advocate... What is something that you wish people, parents in particular, understood about disability?

Leroy: I mean, especially today, I don't wish they had to know. Today, it's so easy. You can Google it and boom, it's there. I know parents are busy, blah blah blah. But really there's no opt out of that. It's your children, for God's sake. Get on the internet, do your research. There's books upon books. That's why I write. I gave my book Black Disabled Art History 101 to my nephew when he was two. He grew up with that book. Now he knows about Ray Charles and disability. You can start in the womb. What do I wish for them to know? Do your homework. It's easy, it's easy now. Google it, go to our website, reach out, go to your bookstore.

Jerron: Tiffany, I'm going to shoot this question to you. My 11 year-old who is on the autism spectrum is very in tune to the world today and in the past. She's developed her own thoughts and feelings about everything that's going on in this world today. How can I have her follow "right place, right time" for things without dimming her voice about speaking out against racism, sexism, and so forth. This is from a Black mama. I think this is a little bit of what you brought up earlier.

Tiffany: I have a 11 year-old son as well, and he's absorbing everything that's kind of going on right now, but he also doesn't fully know those appropriate times, when to bring things up or when to say things, like say this here, don't say it here. That's something that we're kind of actively working on. I know that the biggest thing for us is that we don't keep him from exploring that. There have been times when we're in the middle of a store and then he'll just up and say, 'That guy's a Trump supporter.' And we're working on that. But I also have seen some other people go through the same thing as well, and that embarrassment and that shock, that makes them want to shut their child down, like, 'no, don't talk about it at all, don't do it at all.' But I don't do that with him. I want him to keep that energy and that passion in his life.

We have designated — because we're all schedule-oriented, so everything is a block of time for something — so we set aside certain times during the day where I'm like, 'all right, let it all out. Let it all out. Let it all out. Scream it if you need to. Yell if you need to. I won't say anything. I'll sit back, I'll listen.' And then we go through different social stories. So I'm like, 'okay, so you said all of this' — I'm taking in everything he's saying, I say nothing, I listen, I write it down — and then I say, 'okay, so you said this this way.' And then I ask him, how does he feel about this? And then I'll write down those responses, and then I'll say, 'do you think that you could say what you just said in this setting? Do you think you could have said it here at this grocery store?' And then he'll tell me no or yes, and I'll be like, 'I think you could say something similar, but let's work on an alternate way that you could have said that.' I let him let it out, I encourage him to say it, and then we try to find those different situations and experiences in which he can voice his opinions and let those… It's a work in progress, we're still working on it. I tell it to other parents, and they feel like it's a lot to do, and it is a lot to do, but we are disabled, and there's a lot of things that we have to do and have to learn, and he's learning that now. And that's part of our disability is social interactions, knowing when to say something, taking turns in conversations as well. He'll just pop up in there and say, you know, 'And why are you voting for Trump?' It's something that you have to actively work on constantly and always.

Jerron: D'Arcee — for all our panelists — as a closing thought, I'd like you to think about one word that comes to mind when you think about liberation. D'Arcee, will you start us off?

D'Arcee: You said one word that encapsulates liberation?

Jerron: Yeah.

D'Arcee: Futurity.

Jerron: ChrisTiana?

ChrisTiana: Abolition.

Jerron: Leroy?

Leroy: Education.

Jerron: And Tiffany.

Tiffany: Two of y'all took what I was going to... oh! Access.

Jerron: I'll name joy for that as well. I just wanted to say, thank you everyone for this wonderful conversation. Right now, people are putting their links up in the chat for those who would like to follow them on Twitter. I would also like to offer that if you have enjoyed this program and the work of Extreme Kids & Crew, please consider donating to this organization as they do more work to undo systems and bring in people, experts, and those who are on the front lines of this work. I am so grateful to all of the speakers today. Y'all are brilliant, y'all are lovely, y'all are so necessary in this time. Thank you to the access workers, thank you to the Extreme Kids & Crew support, staff and team. And then I'm going to pass it over back to Caitlin for any last remarks.

Caitlin: Sorry for the delay! I have just been sitting here so happy and and listening to everyone, and thank you so much for your honesty and your truth and your words and... Hey man, I got nothing to add. I just want to thank everyone so much and thank everybody for joining us today. This is the first time we've done something like this and it's not going to be the last. We are having some really strong feelings this year, and you will hear from us and from a lot of people, and we're going to make sure that that keeps going. Speaking without fear and doing it honestly. We're going to keep at it and we're going to make sure that we're doing everything we can to support others in that. We're going to keep going back and learning more about our own privilege — or I should look at myself and say my own privilege — and what that has taught me and how it's coming out now, and then just keep going back to that drawing board, just keep at it.

But really thank you all so, so very much. I'm a little choked up because I'm so darn happy. I will get in trouble if I do not say, you — not the panelists, but everyone watching today — you'll get a survey, and we do hope that you fill it out. It really helps us keep being able to do stuff like that, to know what you liked, what you didn't like. Again, keep it honest. And that's it. I hope everyone has just a beautiful day, and thank you so much.

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