[music playing as Mary: speaks]
Mary: Hello everyone and welcome to season 2 of the award-winning podcast The Politics of Disability.
My name is Mary Fashik. I am your host and founder of the Disability Justice movement Upgrade Accessibility. We’re still navigating that bumpy road, but there are lots of potholes along the way.
You’ll want to make sure you’re buckled up really tight.
All set? Here we go.
[music playing]
Mary: Hello and thank you so much for joining me for this very special series. Would you please introduce yourself to the audience?
Alison: Hello, my name is Alison Mariella Desir. She/her pronouns. I am now based in Seattle. Duwamish lands. I am a mother. I'm an author. I'm a community builder. And I'm a disrupter.
Mary: And we love those.
Alison: [laughs]
Mary: We love disruptors because that's what we're supposed to do, right?
Alison: [laughs] Yes.
Mary: We’re supposed to disrupt all of this chaos and make more chaos, but better chaos.
Alison: [laughs] Yes.
Mary: Right? Tell us about your book and what prompted you to write your book.
Alison: The name of my book is Running While Black and the initial inspiration for writing the book actually came after the murder of Ahmaud Arbery. And his murder was in February of 2020. My son had been born in July of 2019, and I was still very much recovering from pregnancy and postpartum depression and anxiety. And the murder of Ahmaud hit me in a different way.
For generations, Black people have been killed for doing ordinary things. But to have a Black boy who could be my son now be murdered while doing the thing that I love running just hit so close to home. And I was terrified that I decided to bring a Black boy into this world knowing that the world could kill him.
But I also felt this strong need to try to do something about it. So initially I wrote an op ed that went viral. And Black and other marginalized folks were thanking me for finally putting this into words. And so many white people were surprised. So many white people had never considered the experience of running from a Black person's perspective.
And I said to myself, “Okay, I have to write this book. I have to write this book to affirm Black people's experiences and more generally speaking, marginalized people's experiences, and also so that white people can have some understanding that there are other people in this world and that they (white people) have a role in making the world safe for all of us and not just themselves.”
So it's been a really beautiful process getting the book out. And for the most part, people have received it well. You know there are white people and other people with privilege who are always upset [laughs] when you start telling the truth. And there are those people out there. But I've been encouraged by the reception.
Mary: As you may know, I live in Brunswick–where Ahmaud was murdered. My roommate worked with Ahmaud’s mother at the time of his murder. So this hits very, very close to home. I want to know: Did you have, like, any pushback or were there any misconceptions about the title of your book? Because I can see, like, a white audience thinking that you're talking about like Black men running from the police or something like that. Like I can just envision, like, people with privilege assuming the worst about your title. Did you come across any of that?
Alison: Yes and you know, in particular so which is something a little different that I came across was that white people didn't understand the concept, like running while Black. What do you mean? It's just running, right? Like there's no running while white. There's no running while this. And I said, Well, actually, well, you know, when your experience has become the norm and has been seen and accepted as universal, then yeah, you're just running.
But anybody else doing something is doing it while Black, doing it while disabled, doing it while trans. Right? And that's something that white people have, have really been coddled into this experience of thinking, “Well, my experience is normal, and anything that deviates from that is either untrue or not my problem.” So I got a lot of questions around that, like what does that mean?
And my response is always read the book, right? [laughs]
Mary: I mean, honestly, just read the book. It’s an amazing book. Like, read the book. And I think about: There was a young man who lived in my apartment complex. And he would go for a jog every morning. And I thought about him. And I’m thinking, like, “I hope people in this neighborhood don’t get the wrong idea.” Like, he is honestly just exercising. He is going for a jog. But you and I both know that when privileged people see a Black young man, or a Black boy running, they automatically assume the worst.
Alison: They're running from something. They've done something criminal. And this is the thing, right? I wrote this book in part, I wanted to share the struggle, but I also wanted to share the joy. And that's what makes this so complex. I love running. Running has saved my life. It has allowed me to improve my mental health. But it also comes with this additional weight that I have to be concerned with how other people see me when I'm running.
So I can't just have that joyful experience I have to be concerned with what does this look like to other people? So I smile and try to seem really, quote unquote, safe, or should I just try to keep my head down and be invisible? And that's that's really the tug there: between being hyper visible because you're often the only; or there's extra tension to you or be invisible.
Just try to slide under the radar, make no trouble so that nobody does anything to you.
Mary: And I think, like, always having to be on guard. Like you said, it takes the joy out of what you’re doing.
Alison: Exactly.
Mary: And I don’t think privileged people understand that. Like you said, for you it’s not just running. Because if you start running, somebody, like you said, is gonna make the assumption that you’re running from something. “What did you do?”
Alison: Mmmhmm. Mmmhmm.
Mary: But if you see a white woman running, they’re like, “Oh, look at her! She’s getting into shape. Good for her.”
Alison: [laughs] Yes, exactly.
Mary: You do a lot of social justice work. Whether that was your intention or not, there’s a lot of social justice work that went into your book, that goes into what you do on a daily basis. And I do DIsability Justice work. But our work doesn’t always intersect as it should. Why do you think social justice excludes Disability Justice? This is something I’ve been talking about for years now. Like, why is it when we say “Black Lives Matter,” we are not saying, “Black Disabled Lives Matter?” Why is it when we talk about mass incarceration of Black men, we don’t mention that it is mostly Black disabled men?
Alison: Mmmhmm. Mmmhmm.
Mary: …And that Black disabled men face more violence from police than their non-disabled Black counterparts? Why are we losing that?
Alison: Yeah, you know, I mean, the only answer there is, and it's the honest answer, is that, you know, this country in this world more generally wishes disabled people didn't exist. That is just a truth that we have to confront. And it's because of white supremacy. It’s because of capitalism. It's because of a society rooted in this question of how productive can you be, what can you give?
Like how can society take from you? Right? Therefore, if you don't fit this standard of being, “productive,” then you're not useful. Right? And I'm saying this in really harsh terms because I do believe that that is the underlying belief. So what does that mean? That we start to see people with disabilities as disposable. And, at least in my experience, there’s an intersection, a lot, in terms of people who are houseless and also disabled.
Right? Houseless and suffering from severe, persistent mental illness. And there's this: Those people become invisible, again, despite being hyper visible. It's not that we don't see them when we walk down the street, but we'd rather not see them. And therefore, our efforts are not put towards the kind of care and housing what we do. It's like the police.
It's a one stop shop. The police go out and they assert their authority and they keep you know, they keep “productive” people safe and have no, no concern for disabled people. That being said, intersectionality and interconnectedness is really what we… all collective liberation. Right. Which is something that you always talk about. And this is something that I've heard several thinkers say.
But when you actually focus on the plight of the most marginalized people, everybody benefits, right? So if you are creating a world that centers the experience of disabled, Black, trans, etc., right, folks who have the least amount of power in this world, then all of us will have better access to health, to education, to safer streets. Right? But we don't have that collective mentality.
We have a winner-takes-all. I'm going to focus on my issue and not see how we're all connected.
Mary: And that is my frustration, is seeing those who do social justice work, racial justice work, gender justice work. Like, they talk about collective liberation, but that collective liberation does not include the disabled and chronically ill community. I’m like, “Then it’s not collective then.” Collective means everyone. Why are we excluding, like you said, the most marginalized, when that is who we should be centering?
Alison: And I want to say, I want to say that this is work that I have to do on myself to write. And I think and I talk about this in the book in terms of white supremacy is not the shark, it's the water. So white supremacy is not this like big boogeyman that we can all see. And we're like, “Oh my God, there it is. Let's like shut it down.” It's something that we all consume all the time. So what that means is that I am I am as a person with who's able bodied. I am often in situations that I'm not thinking, oh, the reason why there's no wheelchair access here. So somebody with a mobility issue can't be here, right? I am not thinking that always because it's not my experience and the world also perpetuates this idea that folks like that don't matter.
Right? So all that to say is that: When we're doing this work, we have to be actively thinking about this. It's like there's a difference between being non-racist and being anti-racist, right? Being anti-racist means that you are actively pushing against systems that would rather have you forget. So that's in no way trying to let people off the hook.
It's just a reminder that this work is work.
Mary: And I think there's a misconception about access. Right? So many people think access means just a ramp, or an accessible parking space, or an accessible bathroom. And access needs are far and wide, and are very nuanced. And everyone has different access needs. Even if you identify as non-disabled, you probably still have an access need, whether you realize it or not.
Alison: Exactly.
Mary: Everyone, and I said this in my kids’ book that I am writing currently –
Alison: You’re writing a book?!
Mary: I am writing a book.
Alison: [excited scream]
Mary: Yes, in my kids’ book, I wrote, “Everyone has access needs.”
Alison: Mmmhmm.
Mary: This ties back to collective liberation, right? If we understood that everyone has access needs, then those access needs would be met.
Alison: Mm hmm. We've just normalized the ones that able bodied folks need more, right? And this is like okay this is a really silly example, but right now I have Invisalign and I have to brush my teeth after every time I eat and I have to take them out. And I started to think about how I feel, this sense of, like, embarrassment over having to remove my Invisalign and this embarrassment of going to the bathroom. And that's the thing.
Like, any deviation from what's supposed to be seen as the norm makes you start to feel like there's something wrong with you. [laughs] And it's not. It's just that I have this different need at this time. Again, a very simple example, but I think that it's in moments like that when you can really start to reflect on bigger issues and understand, “What must it be like when you have an essential need that you're made to be and feel embarrassed about, that it can't be met,” right?
Like that's a lifetime of feeling unworthy. Like you don't matter when it's just again, the world and the structures that have not shifted to the center you.
Mary: So, the example I can give you is last week. And we are recording this in January of 2023. For everyone who is listening or reading the transcript, last week Marlee Matlin walked out of the Sundance Film Festival because she was on the judging panel. Marlee Matlin is a deaf actress, and Sundance Film Festival refused to provide captions for her.
Alison: Wow.
Mary: Yes. But now this is a big deal. But here’s my thing: It’s a big deal because Marlee Matlin is a well-known actress. What happens to people who are hard of hearing or deaf, who ask for captions, who ask people to caption their content? They get pushback, but now Marlee Matlin is a hero. Because, her stance was, “You did not provide captions, I’m walking out.” And everyone is saying, “Good for her,” just like the Britney Spears conservatorship. Everyone talked about Free Britney. No one talked about the hundreds of thousands of disabled people who have been forced into conservatorships for years and years and years. No one even knew what a conservatorship was until they heard about Britney Spears. Again, this goes back to these needs. And this – all of this has existed before a celebrity talked about them or it was about a celebrity. But yet, this is what we pay attention to.
Alison: Mmm. Mm hmm. You know, I hadn't even heard about that instance with the closed captions. But, to your point that some of these issues only get addressed when there's a population that has more privilege that needs it. Right? You know, and I, I think about that in terms of recognizing, you know, now I have when my son was really little and I was looking through Instagram. And I couldn't listen to anything and people and I started to get upset like, “Well, why are they closed captions,” right?
But it's, again, my level of visibility on it was only in this particular circumstance. And that's why we always need to listen to disabled folks. Right? We need to listen to the most marginalized. Because again, not only do we all benefit, which is – but also we then allow a huge segment of the population to live fuller lives.
Mary: And I want to say both of these instances were white women. Britney Spears is a white woman. Marlee Matlin is a white woman. We’re talking about white women surrounding these disability issues. We’re not talking about multi-marginalized – well, they are multi-marginalized ‘cause they’re women and disabled. But they’re not the most, most marginalized of the group. You know? And it’s just astounding to me that it takes something like that for these issues to be spoken about. And going back to access needs: You’re a mom. And if there are any other mothers, or fathers, or parents, listening, if you’ve ever had to have the door opened for you because you were pushing a stroller, that’s an access need.
Alison: Mmm, mm hmm.
Mary: Everyone has access needs.
Mary: Oh no, we aren’t done yet. Come back for part two to find out where this goes.
[music playing while Mary speaks] Thank you for joining me for this episode of the Politics of Disability Podcast. As you navigate your journey, remember: disability is political; disability is messy; disability is not palatable--nor does it have to be.
[music playing]
