Conversation Series: Black Women Thought Leaders - The Intersection of Social and Disability Justice - Part 2

In celebration of both Black History Month in February and Women's History Month in March, Mary has put together this conversation series.

She continues her conversation with Alison  Mariella Désir in part two of this compelling interview. They discuss what it means to be multi-marginalized in the Black community, how disability is viewed in the Black community, the pandemic, and more.

Alison Mariella Désir is multi-talented: a founder, a doer, an activist, a connector, and an unapologetically straightforward communicator with a passion for community health. Alison came to running organically, following a period of depression, when a Black friend and role model trained for and completed a marathon.

Alison is the author of Running While Black, the tv host and producer of Out & Back w/ Alison Mariella Désir (now streaming) and the host of Out & Back’s companion podcast; listen here.

Alison is the founder of Harlem Run, an NYC-based running movement, and Run 4 All Women, which has raised over $150,000 for Planned Parenthood and $270,000 for Black Voters Matter.

Alison is co-founder and former chair of the Running Industry Diversity Coalition, a nonprofit that unites the running industry to provide resources, measure progress, and hold the industry accountable to equitable employment, leadership, and ownership positions and improve inclusion, visibility, and access for Black, Indigenous, and people of color.

Alison holds her BA in History, MA in Latin American and Caribbean Regional Studies, and EdM in Counseling Psychology, all from Columbia University.

Alison sits on the advisory boards for Strava and &Mother and is an Athlete Ambassador for Athlete Ally.

You can follow Alison on social media here.

The Politics of Disability was named Best Interview Podcast at the Astoria Film Festival in both October 2022 and again in June 2023.

Transcript

[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: Welcome back! Let’s see where we left off….oh, it was getting good! Are you all buckled in? Great! Let’s not waste any more time and get right to it. 

Mary: I want to talk about how you feel -- in your opinion -- disability is viewed within the Black community. My friend and amazing disability advocate, Sean Gold, said to me in his interview: “You cannot be Black and. You cannot be Black and disabled. You cannot be Black and gay.” That there is this thing, because he is both. He is Black, disabled, and gay. And he said: “You cannot be Black and anything in the Black community.” 

Alison: Mmmm. 

Mary: Tell me your thoughts on how disability is viewed in the Black community. And why do you think... you know, that’s a powerful statement, right? “You cannot be Black and.” 

Alison: Mmm hmm, mmm hmm. Yeah I mean super powerful and I would agree with that right And I want to come out in two ways. So I'm first generation American. My father was from Haiti, my mother from Colombia. And I have the experience of being in both of those countries and seeing the ways that disabled people are treated and are completely made invisible. Right?

And are regarded in a sense of like, “Aww, these poor, poor things,” right? As if they're useless and to be pitied, right? So that's one thing that I experienced in those countries and then in the United States in similar, right? It's also this experience of despite our own struggles with discrimination. And when I'm saying “our,” I’m saying Black people, we still see differences as being bad, right?

I can't tell you how many times I've been in conversations with Black folks around trans rights and the same language that was used against Black people in this country. They use that same language against trans folks, right? The same language that was used against Black people. They used against disabled Black people. And it is pernicious. And it goes back to this notion that white supremacy, racism, ableism is not the shark, it's the water. 

We consume all of this information. We internalize all of that information, and then we use it against our own people. And when I had my son, that's when I started to think even more deeply about this, that you don't know who your kids are going to be. I mean, at any moment, you don't know what could happen to you that could change your life.

Well, you don't know who your children are going to be. And that has allowed me to access even more empathy and fight because we pretend as if these are issues that affect other people over there, like, no, we have to care because you just don't know in life, right? If you come from a place of care and love again, I've said this several times, but it's just, just everybody benefits and you allow people to live a fuller experience.

Mary: But yeah, I would definitely agree that no race has extended the rights or empathy to disabled people that they deserve. 

Mary: I wanna ask you a question. Do you speak Spanish?

Alison: Poorly, yes. [laugh]

Mary: Okay, so do you know, in Spanish, disability is “discapacidad?” 

Alison: Yep.

Mary: Which is literally translated to “decapacitated.” 

Alison: Yep. 

Mary: And that speaks volumes about how disability is viewed, right? So we’re viewed as decapacitated, like there’s something wrong with us. And it’s like that’s something that I would love to venture in, and talk about how disability is viewed in other cultures. Because that has carried over to our culture as well.

Alison: There's often seen as a connection between disability and some kind of evil spirit even; or notion that your parent did something wrong, therefore, your child ended up like this. Right? It’s this idea as if this is a problem. And again, that's because what we see as the norm is an able-bodied person. Therefore, anything that deviates from that is problematic.

Several people have said this, but one person in particular said it to me around gender. Like, “With all these billions of people in this world, do we really think there's only room for two genders?” Like how ridiculous. With all the billions of people, do we really think that there's only one standard of how your body moves or how your body works?

Right? It's actually really foolish when you start to think about it.

Mary: It truly is, and I want to go back to something that you were talking about and I want to tie it back to white supremacy and how ableism is a tool of white supremacy. And often, I get pushback for saying that. And it goes back to people who were enslaved. Mmmhmm. ...and if the “masters” thought there was something “wrong” with you or your child, they would kill you. So this goes back to ableism, capitalism, racism, right? They couldn’t sell you because you weren’t good enough to be sold. You would not make them money. All of this goes back to enslavement.

Alison:  Absolutely. And I think about eugenics. I think about Darwin, all of these ideas that were used to perpetuate racism, ableism, but these ideas that the strongest will survive or that we can rank people, we can rank human beings in terms of the most infirm to the most valuable. Right. Like all of those things are seen as science. And while in theory we may no longer uphold those beliefs like they absolutely underlie everything.

Mary: Now that we are still in a pandemic, even though people want to ignore that fact. But we are still very much in a pandemic, and that long COVID is a mass disabling event. And we know that Black and Brown communities are the least likely to be vaccinated, and for good reason, especially the Black community. They have good reason to not trust vaccines. Thinking about the Tuskegee Airmen, when these men were literally given illnesses on purpose. This happened in an institution for disabled children as well. They were purposely infected just to see how their bodies would react to a disease. So, when we talk about vaccine hesitancy, there’s a reason for that.

But then I think about, again, how the most marginalized communities are the ones who are going to get COVID, and end up with long COVID, and end up with more disabled members of their communities. Talk to me about that landscape. What do you think that’s gonna look like in 3-5 years, when we have the most marginalized communities, Black and brown communities, becoming disabled because of COVID?

Alison: Yeah. You know, I think about this a lot because, you know, whenever I'm on a plane or any kind of public transportation, I wear a mask. But there are many spaces now when I go to the grocery store where I'm not wearing a mask and where nobody's wearing a mask. And I think about something that you said before, which is not an excuse for myself, but I think about the hypervisibility of being somebody in a mask right now.

Right? And the hyper visibility for me of being a black woman in a town that's 2% black in mask. Right? And so it's sort of this push-pull around. And again, I'm not immunocompromised, but there's a safety for my health. Like, I don't want to have COVID. I also don't want to have RSV, which I did have because my son is in school.

I don't want to have the flu, which I did have because my son is in school. So there's the health risk there. But then there's also this additional burden of I don't want to stand out, I don't want to call attention to myself. And you spoke about the experience of being in an elevator and a white person saying to you, “Oh, are masks mandated again?” Right?

This idea that then white people or people with privilege feel like they want to assert themselves and question you for why you're doing what you're doing. So again, that doesn't excuse me from not wearing a mask, but I think we are facing a real failure of leadership in shifting the culture like there was an opportunity for empathy, for science, for disabled people, for just recognizing that we're all connected and that you're wearing a mask because you love yourself and you love other people.

We missed that boat. I have a friend who’s suffering from long COVID and my friend is 37 years old. Ten years from now, 20 years from now, who knows how that's going to manifest? Who knows the disaster that we've created? And guess what? There's going to be another COVID like event, right? We're not beyond it. So I don't know.

I just I get so upset thinking about like, what is our leadership actually doing? You know, they're fighting on Twitter or with each other or they're creating obstacles just to get points from voters rather than really dealing with these massive issues that are interconnected: disability justice, environmental justice, racial justice. We're headed towards so many calamities and there's no leadership.

Mary: You’re right, like, we had this opportunity, you know? But again, it’s profit over people. Everyone was rushed back to work, and now it doesn’t matter if you have a positive COVID test. Like, “Go to work anyway.” 

Alison: Right.

Mary: It’s like: I don’t know who has COVID. There are maintenance men that come into my apartment to fix something. They don’t wear a mask. I’m at risk every time they enter my apartment. Yes, I’m wearing a mask. Yes, I keep my distance. But there is still someone in my apartment who may or may not be vaccinated and is not wearing a mask. 

Alison: Mmmhmm. 

Mary: So even though I have been home for 3 years now, every time they come in to fix something, I’m put at risk. 

Alison: Mmmhmm. 

Mary: And, you know, we had an inspection this week of our apartment. And when they came in to do the inspection, I said, “I’m stepping outside.” So I had a mask on, and I’m outside while they’re inspecting my apartment because I don’t want to be in a closed space with people who are unmasked. And the fact, that like, masks are such a political statement now. It’s so ridiculous to me. But something I always say is, “Disability is political.” Right? So there you go. 

Alison: Right, right.

Mary: There’s me being political. And I understand that my existence, and the existence of my entire community...my mere existence is a political statement. 

Alison: Yeah. 

Mary: And it should not be, but it is.

Alison: And to your point, like, I also agree that everything is political, but masks became politicized in a way that was polarizing, right? And it's because, you know, the right was looking for anyway to conflate this idea of wearing a mask with the abortion rights movement. Right? Like this idea that my body, my choice and this is where so many of these conversations lack nuance, right?

It's apples and oranges. But politicians, the language and the rhetoric has become so simplistic and polarized that, yeah, to wear a mask somehow signifies all of these other things when truly it's about your health and caring for people.

Mary: It's about me not dying.

Alison: Yes.

Mary: Which is what they want, right? 

Alison: Right, right, right. 

Mary: Something that I have said since March of 2020 is: I always know that society wanted me dead. But knowing that society wants me dead and seeing it in my face are two completely different things. I’ve always known this. I’ve always known that my existence is seen as a burden, and they would rather that I don’t exist. But when I’m watching people at the beginning of 2020 holding up signs that say, “Sacrifice the weak.” That was like eye-opening to me. And that is when my work turned from disability rights to Disability Justice. Because I knew without Disability Justice, it wouldn’t matter what disability rights I fought for.

Alison: Mmm, that’s so disgusting and heartbreaking.

Mary: Yeah. It amazes me.  And now, something that I’ve said is: If we’re going to work toward collective liberation, that has to include COVID precautions. 

Alison: Mmm hmm. 

Mary: COVID precautions is part of collective liberation. Because if collective liberation includes the disabled and chronically ill community, particularly the most-marginalized, it has to include COVID precautions.

Alison: Mmm hmm. You're absolutely right.

Mary: I want to talk about what drives your passion and your advocacy. What is that? And I think I know part of the answer. But what keeps you going? Because this work is hard, right?

Alison: Yeah.

Mary: So hard, and I know that there are days that I just don’t want to anymore. So on the days where you just don’t want to anymore, what keeps you going?

Alison: So it's, it's a mix of things now that I have my son. Absolutely. And my son drives so much of it because as a parent, it's your, I feel it's my role to do as much as I can for him in my house to make him feel like he can be his authentic self and then in the world to do as much as I can to make sure that the world allows him to be his authentic self.

But even before my son, it's funny, I was going to say I love people, but sometimes I hate people. But I do. I love building community. I love being in spaces where people can thrive and I love creating really good energy. And so I recognize that the obstacles to that are all of these structural, historical, institutional issues racism, ableism, sexism, all of those things prevent us from being our best selves.

And so ultimately, that really is it, right? I want to create spaces where we can all be our full, authentic selves. And as somebody who has access to certain privileges, I know, I know what that could look like, right? And so I want to ensure that everyone has that. But truly, it's my son, you know, And I just it's terrifying to think of what could happen to him, whether it's a school shooting, whether it's the shooting anywhere at this point. I have this urge to want to just keep him in my house forever. But knowing that I can't do that, I have to do what I can in the world as much as I can. You know, I'm but one person, but as much as I can to try to create a safer space for him.

Mary: And I think, you know, you said a lot of important things. And it is frustrating. And especially, you know, like, we’ve seen so much violence recently. And it’s hard to reconcile and process everything that we’re seeing on a daily basis. And, again, we’re trying to work towards this collective liberation. But if we don’t include everyone, we will never get there. 

Yep. 

And I want nothing more than for your son to grow up and be a grandpa. 

Exactly. 

I want him to grow old and live a full life, whatever that means to him. I want nothing more than that for him. And I think that’s also what keeps me going, to make sure that I use the privilege that I do have to amplify voices like yours. And at some point, your son’s, you know?

Mmm hmm. 

And I think that’s important. Do you have any final thoughts or a message to those doing social justice work, or authors, or in the Black community, or outside of the Black community? What are your final thoughts, and a message to the audience?

You know, there's so many things that I could say, but I'm going to say this, that anybody who's listening, I want you to understand how important is to support folks like Mary, support folks like myself, support folks who are putting themselves at the forefront of this, right?. And support can be anything. Support can be asking Mary how she's feeling.

Support can be financial because you love this podcast and you appreciate the work that she's doing. Support can be resharing this conversation that more people hear it and more people start to question what they believe and maybe more people get encouraged to take chances, right? Oftentimes as helpers, we don't ask for help ourselves, but each of us has a role to play.

It's not just the ones who are putting themselves the most out there, who have a role in social justice work. Every single person has a role in social justice work. So think about what that is for you. And if that is helping the helpers, then please, we need all the help we could get.

Mary: We do. And help is also buying Alison’s book, Running While Black. 

Alison: Thank you. 

Mary: Which is available everywhere, correct? 

Alison: Correct.

Mary: Everywhere you can buy books.

Alison: Absolutely. 

Mary: Buy the book. Read the book. It’s amazing. And, you know, start on that anti-racist journey. And you may say, “Well, what does that have to do with the book?” Read the book and then you’ll find out what that has to do [with it].

I want to thank you so much for your time today. For taking the time to have such an important conversation with me. Thank you so much.

Alison: Thank you, Mary. Any time. And actually, I am coming to Atlanta at the end of February. If I can find a car and find you, I will do that.

Mary: Awesome. Thank you so much.

[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]