Podcast

Interview Date | April 14, 2020

JILL: Welcome to the DisTopia podcast, where we look at disability from the inside out. [peaceful music fades in] My name is Jill Vyn, and I’m the cohost of this podcast with my friend and colleague, Chris Smit. 

What you are listening to now is the first of two interrelated components of our My Dearest Friends project, both of which have been generously underwritten by the Ford Foundation. The My Dearest Friends podcast, which is produced by DisTopia, is a series of recorded conversations with disabled people about their individual experiences with the COVID-19 pandemic, and the personal, cultural, and political alterations it has triggered. These informal conversations give our guests the opportunity to share personal experiences of sheltering in place and to engage in conversations around deeper questions raised about the value of disabled people, the core values of the disability culture, as well as our hopes, fears, and strategies for living an authentic and pride-filled disabled life.

The second component of the My Dearest Friends project is created in partnership with disabled artist Oaklee Thiele, who is creating black and white illustrations that represent our collective response to our new and uncertain realities as a disabled community. Designed as an open invitation to the disabled community around the world, we invite all of you to participate. More information can be found on Instagram @MyDearestFriendsProject, Facebook, and on our website, DisArtNow.org.

As is true for many of you, our desire for this project is to share our experiences as a disabled community, to disrupt ableist beliefs, to celebrate a culture whose lived experience of disability necessitates flexibility and creativity, and to validate disabled voices and perspectives in the midst of the COVID-19 pandemic.

[peaceful music slowly fades into upbeat, but pensive music]

MARY: My dearest friend, what do you see when you see me? Someone who is weak, vulnerable? I am one of many with a powerful voice. Can you hear us screaming? If we have equality, will you listen to our screams, or will you let them continue to go unheard? My name is Mary Fashik, and I am a founder of the Upgrade Accessibility movement.

JILL: And when did you start the Upgrade Accessibility movement?

MARY: It was unofficially started in August of 2018, but the social media did not begin till January of 2019.

MARY: I’m very excited for the opportunity because this is a platform I’ve been trying to get my message out to more people.

CHRIS: Yep.

MARY: And that’s the challenge I’ve been facing since I started my movement, but even before that. Just getting people to understand that what I’m saying is important. People who are not disabled need to hear as much as people who are disabled.

CHRIS: Absolutely. Your approach to accessibility is especially important and, I think, so wonderful to hear about.

JILL: And can you tell us about what led you to this moment?

MARY: [chuckles] I was brought up in Miami, Florida? Since I was a young girl, I told my mother than my purpose on this earth was to speak for others who could not speak for themselves. I told my mother that at eight years old. I’ve always known what my purpose is on this earth. I just didn’t know how to hone my skills. But I think a lot of that has to do with the ableism that I faced growing up, and also the internalized ableism that I dealt with just being told to keep my opinions to myself, and nobody wanted to hear what I had to say. Nobody care about what I had to say.

But in August of 2018, it’s a funny story. I was sitting in the accessible stall at our local grocery store, and my wheelchair was right up against the door. And I barely had room to transfer, and I’m sitting there thinking, this is not accessible. And I told my best friend. I said, “We need to upgrade accessibility. This has to be a thing.” I said, “I’m starting a hashtag.” So, I did my research. There was no hashtag, so I started to post a few observances that I made. And I would use the hashtag, and I let it go at that. There were some other things going on. And then in December of that year, my accessibility needs were not met. And that caused a big chain of events to happen. And out of my anger for my needs not being met was born Upgrade Accessibility.

[upbeat but pensive music break]

CHRIS: Yeah. Many of the folks we talk to, and ourselves too, have had these experiences early in life that have pushed on us and sort of made us who we are today. And it’s so familiar to hear that in your own story. Could you tell us a little bit more about growing up?

MARY: I was adopted at 10 months old. I was adopted from Beirut, Lebanon, and I was brought to Miami by the couple that adopted me. When I was adopted, I was not crawling. I was not meeting milestones. But I was very smart. I understood three languages around the age of one. So, my mother was very concerned that I was not crawling. You know, I wasn’t hitting these milestones. So, she took me to several doctors. The doctors didn’t know what was going on with me. The neurologist told her, “Well, she won’t amount to anything, so you can just lock her away.” Thankfully, she did not listen to what the doctor had to say. I don’t like being inspiration. I’m not here to inspire! I’m here for people to aspire to be like me but not be inspired by me.

So, growing up, I did face a lot of challenges. Just being mainstreamed into regular classes was a challenge. My mother always had to fight for my academic rights per se. It’s an interesting story because when I was in elementary school, I was completely mainstreamed into classes with kids that were not disabled. But in the summer, I was put in classes with disabled children. We were in a two-story building with no elevator. So, they refused, in the summertime, to bring down a grade level. They said, “Well, we do it during the school year. We’re not gonna do it during the summer as well.” So, I would have to say my first experience being around children who were disabled, my earliest memory would be elementary school in the summer. And I always had this juxtaposition of being disabled but not relating to the disabled kids, yet I didn’t relate to the kids that weren’t disabled either. It was kinda like where do I fit in? Oh, I don’t. Oh well. Now, at 42, I know it’s OK that I didn’t fit in. But when you’re eight years old, and you wanna just be part of a group, it’s very, very difficult.

So, throughout my schooling, it was always a fight. Middle school, I went to a magnet school. Again, there was no elevator. They brought the entire grade level down for me. I always As and Bs. I was always a good student because I was told I had to be better than kids who were not disabled in order for people to take me seriously. So, you kind of develop this perfectionist attitude, like if I don’t do everything perfect, then people won’t take me seriously. I still have a little bit of that ingrained in me, that I have to sound perfect and look perfect in order to be taken seriously for just one minute.

The rest of my schooling, you know, it was a lot of the same, a lot of being told, “Well, you can’t do this,” or “you can’t do that.” When I went to college, I had a four-year scholarship to a private university. I graduated with a 3.9 out of high school. I went to a private university in Miami. I wanted to be a teacher. That was my dream ‘cause I always loved doing it. I was told by the Dean of Education that I could not be a teacher because of my disability. And to be told that—and more specifically, be told that by a nun, because it was a Catholic private university—a nun telling me that you cannot be a teacher because the kids will not understand you, and who is going to write on the board for you? So, there’s always been other people putting obstacles in my way when I didn’t think there were obstacles in the way. And my whole life has been trying to destroy and move the obstacles that other people put in my way.

[upbeat, but pensive music break]

CHRIS: Mary, I’m so interested in [chuckles] where did you find your understanding of activism? These experiences, gosh, I am really feeling a kindred-ness with you because I’ve had these experiences in my own life. For me, my sense of activism came really, really late in life. Is there a moment when you wake up, and you’re like, “Hey, this is bullshit! This is not gonna,” right?

MARY: [laughs]

CHRIS: Like, when is that moment?!

MARY: I don’t think it was one specific moment. I think it’s just an accumulation of a whole lot of moments of me going, “What?!” [laughs] “What do you mean I can’t do this?” I’ve always been that way. I’ve always questioned why. And if you wanna annoy someone who is not disabled, ask them why! [laughs] Why and how. How do you consider this accessible if there’s only a small step? That’s not accessible. So, what, in your small mind, makes you believe that that’s accessible? So, I think it was a lot of moments, and I always knew from the time I was young that things could be different and should be different.

JILL: Gosh. I have so many questions for you. [chuckles]

MARY: [laughs]

JILL: Well, there’s a few things. I wanna make sure to get back to that internalized ableism and how you didn’t internalize that. I think that that’s really key to who you are. But also, I’m really interested in knowing, you have to work really hard. On a day-to-day basis, it sounds like you are working really hard. And I’m wondering when do you get to let your guard down, and when do you get to be your authentic self? And who: in what communities or what spaces is that possible for you?

MARY: I don’t think, as a disabled person, that you ever get to let your guard down. Ever. And that’s why we are always so tired. Because we are always on guard. Always. Even when I would go out with a group of friends, it’s, can I get to the space? Is it truly accessible? Not accessible to someone who is non-disabled, but truly accessible. You never get to let your guard down because there’s always gonna be someone who is going to challenge you and argue with you about which point you have. And it’s exhausting. But if we’re ever going to make any progress, it needs to be done. If those who know me, know me well, they know that I’m always up for a good fight! You wanna challenge me? Please! Come at me! I’m always ready to argue about disability rights and accessibility and whatever. And I’m gonna call you out on your bullshit. Can I say that? I’m gonna call you out on your bullshit! I’m so sick of people who give disabled people the proverbial pat on my head. You know, would you treat your daughter or your son that way? No! So, why the hell do you think it’s OK to treat a disabled adult that way?

And I think my safe space is the community that I have built with Upgrade Accessibility. It’s a small community, but it is one that I adore, and they make all of this worth it. When I get a message saying, “Thank you for all you do. Thank you for giving me the courage to speak out about something,” it’s worth it. It’s worth the exhaustion, the daily exhaustion. It’s worth trying to balance paying work with my activism, and just running myself ragged is completely worth it.

CHRIS: Yeah. Again, the idea of always being on and always being semi-exhausted by that, yeah. I think a lot of the folks who we’ve talked to and our own personal experiences sort of match up to that. In terms of that community that you have with Upgrade Accessibility, what is your role in that community?

MARY: Can I curse? Is that OK?

CHRIS: Oh, absolutely! [laughs]

MARY: OK! [laughs] Yesterday, I was telling my best friend, I said, “I am starting a revolution, and I am a fucking leader!” And I was so proud of that, you know?! I’m a leader. I’ve always been one, whether people like it or not. That’s always been how I am. I am a leader, and I accept that role. And I love doing it, and yeah, I’m starting a revolution. And while everyone is at home whining about being bored, I am rallying the troops, and we’re gonna make a difference. They will not see us coming.

JILL: Oh! I just love talking to you and hearing you! What comes through very clearly is that you are so secure in your own identity.

MARY: [laughs] Not really.

JILL: Oh, really?

MARY: No.

JILL: OK, well, tell us about that!

MARY: I have wanted to put out a big front. Like I know who I am, and I’m proud of who I am. And that won’t ever change. But I have moments of self-doubt. For many, many years, I taught Sunday school. When I taught, my speech was always an issue. And I had adults sit in my classroom and mock my speech! And they thought this was OK. It’s been at least 10 years now, and it still affects me to this day. For a long time, I was very hesitant to make videos for Upgrade Accessibility. I’m like, people don’t wanna hear my voice. They won’t understand me. I can’t do this. And it got to the point where I’m like, well, guess what? Suck it up, buttercup. If you’re gonna be a leader, you have to talk. Anyone who knows me, knows I love to talk! So, I had to get over that, and I’m still, like I was so nervous about doing this podcast. I was like, oh my god. What if it’s a problem? And then I’m like, no! You have to do it. So, a lot of it is me telling myself, “Too bad. Do it.” [laughs]

CHRIS: Well, and that’s that internal ableism, right, that sorta pops in. That is the haunting voice of years and years of fear. God, yeah. I had that shit. I hate when that gets in my head. No, I totally understand, yeah.

MARY: This is so difficult because, like you said, that voice in your head that has been there for so many years. And for so many years, I was told, “Be quiet, Mary. No one wants to hear that. Nobody cares. This is not a big deal.” And I’m thinking, but wait! This is a big deal. Why do I have to be quiet?

JILL: You don’t have to be quiet, and your voice is really important. And we’re thankful that you fought that inner voice to come join us today.

Can you talk about the work that you’re doing right now, during the COVID-19 pandemic? And I’m guessing that you’ve been pretty busy.

MARY: Yes. I feel like I’ve been busier now. Being at home, this is week six for me at home. I was approached to write an article about ableism and COVID-19, which I did. And on Friday, I will be a panelist for a webinar for the University of Washington, and it’s a webinar about ableism and the virus. So, I’m very excited to be a part of that webinar. As a part of Upgrade Accessibility, I have a really exciting project I’m doing, and I’m so excited about it. I’m putting together a virtual camp that was inspired by the documentary Crip Camp. And what we’re going to do is have, basically have like summer camp, but it’s a virtual camp. We’re going to rally the troops, and we’re gonna organize our advocacy and see what we want done, what we want to do, and how we wanna go about it. While everyone is at home, whining about being bored, we are getting together, I guess you would say, our demands and figure out how we’re gonna go about getting these demands met. Because the virus has brought about a lot more ableism.

[upbeat, but pensive music break]

I’ll say last night, I made a post, and it said that, what is seemingly accessible now is just it’s privilege. Thinly-veiled accessibility is actually privilege. What happens when they don’t have to telecommute anymore? What happens when online classes are not available, as many as are available? What happens when curbside pickup goes away? So, it’s not that things have been made more accessible. It’s that people who are non-disabled are just being catered to more.

CHRIS: So, the fear is that when this moment ends, our needs are eclipsed again?

MARY: Exactly. Exactly. Once all this passes, all these accessible things are gonna go away, and then we’re right back where we started from. It’s kinda like Wizard of Oz. When she goes to Oz, everything’s in color, and then when she wakes up from her dream, everything’s black and white again. Right now, we’re in that world where everything’s bright and colorful. And as soon as this is over, we’re gonna go back to the black and white again.

CHRIS: That’s a real powerful way to put it.

I wonder if you could talk a little bit more about where else you’re seeing ableism in the COVID pandemic.

MARY: I would have to say with something as simple as ordering groceries online. I’m not saying that the elderly do not need their shopping hours and their time slots, but my local grocery store is doing time slots from 9:00 am to 2:00 on Thursdays just for the elderly people. So, someone like me, who is disabled, I don’t have that available to me. I’m having to sit by my computer on a Friday night, refreshing the page, making sure I get a time slot for the following week so I can have groceries two weeks from now. So, everyone who is non-disabled is taking advantage of these online groceries, and those of us who are disabled are not able to get time slots for two weeks. The theory behind it was good, but the actual execution is very flawed.

CHRIS: So, just sort of looking at this specific example, what can we do about that? What have you been telling people to do, or what have you been thinking about doing?

MARY: But that’s the problem. Is these things have to be thought about before there’s a global pandemic. There’s not a way to fix it right now when we’re in the middle of a global pandemic. And once the global pandemic has passed, things will go back to normal. So, it won’t be a issue. People won’t think about how can we fix this if it happens again.

JILL: And that sounds like what the goals for your virtual camp are about, is having those conversations. Who is included in your camp?

MARY: Anyone that wants to participate: Anyone in the disabled community, any allies. I have a couple parents of disabled children that wanted to participate, and I said absolutely. Because we are fighting for their children’s rights also. My goal is to pave a way for the generation that comes after me. [upbeat, but pensive music plays through next sentence.] Just like Judy Heumann did for us, we also need to do for the generation that comes after us.

CHRIS: I’m glad that you bring up Judy Heumann. I’ve seen some of your writing on the Crip Camp and the importance of it. And can you talk to us a little bit about that movie and trying to think in particular of what it was like to watch it and what you think its power is.

MARY: Crip Camp is something that needs to be shown everywhere. In order for people to even get a crumb of an idea of what disabled people face on a daily basis, they need to watch Crip Camp. That being said, it was emotional, but it also made me very angry to realize that we have not come very far in 50 years. Those who are not disabled still have the same attitude. Government still has the same attitude: Accessibility is too expensive. That’s bullshit. I am tired of disabled community being treated like our dollar is worth less than someone who is not disabled. We have spending power, but we’re often ignored. We’re ignored, and you saw that in Crip Camp when they could not get into businesses. How can they spend money if they can’t physically access the business? The other thing was just by watching Crip Camp and realizing that you know, people still see disabled people as weak, and there’s so much emotion, it’s hard to put into words. I have watched it three times. I have cried every time I’ve watched it. It’s just, it’s so powerful, but also fuels that fire in me and wants me to keep fighting. Because we’re obviously not done.

Denise Jacobson, she said the ADA was just the tip of the iceberg. And until we change people’s mindsets, it’s just a law on paper. And I’ve been saying that for a long time; The ADA is just a law on paper. When we have no rights, we don’t have a right to fight inaccessibility. And some people will say, “Well, yes, you do.” But in actuality, we don’t. Trying to find a lawyer who is well-versed enough in ADA law is very difficult. There’s no accessibility there, trying to find someone to advocate for us. So, we have to advocate for ourselves. And it’s frustrating because I have a ongoing battle with a building that I would go to every week, and the ramp was not ADA compliant. The owners of the building is a law firm! They’re a law firm! And they said, “Oh, well, we were grandfathered in.” And there is no grandfather clause in the ADA. That is a big misconception, and it’s one that I fight with every day. I am tired of living in a world designed by non-disabled people who say, “Well, I made this accessible.” No, you did not. You did not.

And one of the most poignant moments for me in Crip Camp is when Judy Heumann says, “If I have to be thankful for an accessible toilet, when will I be a part of society?” And it’s so true. You know, I’m expected to be thankful because I have a place to go to the bathroom! Well, if you think I need to be thankful for that, then obviously, you don’t see me as your equal. Because someone who’s not disabled doesn’t have to be thankful for a toilet, but yet we’re supposed to be thankful for things like accessible toilets or a door that we can actually open. Imagine having to be thankful for a door that we can open to get into somewhere. It’s so infuriating to me. I could go on all day about that! But Crip Camp is just something that, like I said, it fueled my fire to keep fighting because we’re not done. And part of the virtual camp that I’m doing is I want new legislation. The ADA is outdated and broken. We can’t fix it, so we need something new to replace it. The ADA kind of replaced the 504. Well, now it’s time to replace the ADA.

[bright, but pensive music break]

JILL: What are your channels, currently, to get the word out about your virtual camp, and how will it be facilitated?

MARY: Right now, I’m asking my followers on Instagram to spread the word about it. I just put up the information yesterday, the sign-up form, and the link is in the bio of Upgrade Accessibility. And people can just go sign up. I’m working on the best way to facilitate everything. I have asked, in the form, what people’s needs are so they can be met. I’m thinking mainly group chats. That way it’s accessible. I am going to be making some welcome videos, but I am looking for a interpreter so we can do a picture-in-picture type of thing or a split screen where I’m talking, and the ASL interpreter is signing. So, I’m doing my best to try to facilitate everyone’s needs. On the 24th, which is the Friday before we kick off, we are going to do a watch party of Crip Camp, and we’ll always make sure we have the captions going so everyone can enjoy. And there is a chat function. That way everyone can participate and enjoy the documentary. And it’s going to be difficult, but I’m going to do my best with group chats and things like that to facilitate everyone’s needs.

JILL: So, when would you like everybody to sign up by?

MARY: I’m going to keep it open the first week, because anytime you do a camp, even here when we do Vacation Bible School, we always have people that come in after the first day. The first day will be April 27th. I’m going to keep it open till that Friday. The idea is to break into small groups, and each group will tackle a certain topic. The idea is to have a general meeting once a week with everyone, and then the second day of the camp will be everyone in their individual groups. It’s gonna be about six weeks. I know things change. Things happen. So, I don’t want to box myself in or anyone else in. But I would like it to go for six weeks. You do not have to participate for the whole six weeks. If you wanna come in for a week or two weeks, that’s fine. If you wanna come in the whole six weeks, that’s even better.

The group meetings will be about 30 minutes ‘cause I know a lotta people said that that’s about the most amount of time that they’re able to sit comfortably. That includes myself. It’s fine. I want this to be accessible to everyone. So, short meetings are absolutely fine. So, I wanna say about an hour, an hour and 15 minutes for the whole week.

JILL: Sounds fabulous.

I’m curious, where are you located right now?

MARY: I’m in Brunswick, Georgia. That is an hour north of Jacksonville, Florida and an hour south of Savannah.

[upbeat, but pensive music break]

CHRIS: Mary, is there anything else that we haven’t talked about yet that you’d like to talk about?

MARY: I just wanna make it a point to say that when all of this began, those who are not disabled took this as a joke, and I find that very often. When things affect the disabled community more than anyone else, it’s seen as a joke, or it’s not as important. And I’m tired of our lives being considered as expendable. And I’m tired of those who are not disabled determining my life expectancy without any fact. You can’t say because I have cerebral palsy or a chronic illness that I’m gonna live a shorter life than someone who is not disabled. All of these things have come to the surface because of this pandemic, but these things have always existed. Ableism has always existed. All the pandemic did was push it to the forefront, and it really exposed society’s view of the disabled. But I’ve always known that people don’t care about my life as a disabled person. I’ve always known that. You grow up knowing that when someone teases you or mocks you, you grow up knowing that they don’t value you as a person simply because you’re disabled. So, that’s nothing new.

When I share on my Facebook about how limited resources are forcing hospitals to choose who will survive and who won’t, all I get is the sad reaction from my friends. And it’s like, I don’t want you to be sad. I want you to be mad! I want you to do something. I want you to say, “Your life has value. Your life is not expendable.” So, I think non-disabled and healthy people just sitting by idly, watching them giving the proverbial pat on my head is so infuriating to me. I want my friends to be just as mad as I am that disabled people’s lives are not being valued. And I apologize for getting so emotional, but it just makes me…it makes me angry. And it’s time that this pandemic make those who are not disabled listen and understand what it’s like to be disabled and what it’s like to be marginalized. Because we always have been marginalized. That’s no different. And seeing that people who I thought were friends not really care, and you start to realize well, OK, nothing’s changed. Nothing’s changed. And it’s just, I think now more than ever, the disabled and chronically ill community needs to come together as one because we’re on our own. And I know a lot of people will dispute that fact, but we are. We have some allies, but we’re mostly on our own. And if we don’t advocate for ourselves, no one else will.

JILL: Well, you are very well-spoken, Mary. I hope your voice just gets louder and louder and stronger as you have a following in your revolution. And I’m glad that we had an opportunity to meet and to learn from you and to share with others so that they can learn from you too.

MARY: Thank you so much. Can I come back? [laughs]

[upbeat, but pensive music plays through the next two sentences]

CHRIS: Absolutely! Yeah, we’re honored to be able to try and help get your voice out there. Yeah, it’s all good work, and so we’re excited to see where the future takes us.

JILL: Thanks for listening. Be well, keep your distance, send us your comments, questions, and your submissions for Oaklee Thiele to hello@DisArtNow.org. Please make sure to follow the My Dearest Friends project on Instagram, Facebook, and DisArtNow.org. And thanks again to the Ford Foundation for their support of this work and to cat enthusiast Cheryl Green for the transcription of this podcast episode.