Podcast

Interview Date | April 20, 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 away]

JILL: We appreciate you joining us today and making time for this.

VALERIE: Yes! Thank you for inviting me.

CHRIS: I am hearing like a…. Now it’s gone. It’s a hum.

VALERIE: It’s probably my snoring dog. Yeah. He’s like a 90-pound old man, and he snores like a dump truck. [laughing] So, let me go ahead and move.

CHRIS: I’ve had those dogs. My Chihuahua does not snore as loud, but still.

VALERIE: OK. Is that better?

CHRIS: It’s perfect.

VALERIE: Great.

CHRIS: Yeah, that’s perfect.

[mellow electronic music break]

VALERIE: My name is Valerie Novack. So, I think the professional title is I am a disability policy expert or something like that. I [laughs] I’m an Afro-Latina disabled person. I kind of came to this work, I say, honestly. I went to school a little bit later in life because I had really, really very bad depression when I was younger. I didn’t really expect that I would be here as long as I have been. So, by the time I got to about the middle of high school, I had no intentions of college or a future or anything like that. And so, I didn’t end up going to college until I was a little bit older. Didn’t really know what I wanted to do. Just knew I wanted to help people. And so, I kind of jumped around between things like social work and speech-language pathology. And at the time, some of the physical symptoms that I had had for a long time in my life started getting worse, and I started losing mobility and losing consciousness, getting a lot of these symptoms that I didn’t know what to make of.

And at the same time, sort of started finding the disability community because of some of the things that were happening in my body. And my college had just announced a Disability Studies program. I took one class and was like, this makes sense to me. And I think part of it made sense because I was kind of, in real time, also experiencing certain things in my body. And so, it just immediately felt like it made sense. And the more that I found myself taking these classes, I found home with other people that were also queer or also disabled or also just trying to kind of navigate these very real changes either in their body or their minds or ways that they’d lived their whole lives and being OK with that difference. I immediately changed my major, added a whole other year to my college experience. That tells you how much I was drawn to this. I was a semester away from graduation and changed my major.

As I started learning more, I really became very interested in access, and I started really kind of getting frustrated that we looked at access so individually: was this building accessible? Was this car accessible? And I remember thinking, why aren’t we looking more at cities as a whole? And so, I started studying that, added a second major in Urban Planning and focused on accessible planning, city planning, rather than building for building. And while doing this, I got an internship with our city and was asked to look over the accessibility of the emergency and evacuation plans for the city. Which essentially boiled down to like a sentence in each page that said like, “Consider the needs of disabled people.” Like, that was it. [laughs] And so, I was tasked with finding best practices from across the country and quickly learned that there was very little, if any. And I thought this is a huge, huge problem and started researching that.

When I graduated, I immediately went and got my Master’s in Emergency Preparedness, and so started working and focusing on that. So, now I do primarily infrastructure, housing, and emergency preparedness policy, which is why since COVID has hit, I’ve been working a ton. [laughs] My husband jokes, “Well, you know, you did go to school for emergency preparedness. Emergency is in the title.” And I was like, “Yeah, but I wasn’t quite expecting to graduate and get like Harvey and Irma and COVID [laughs] all within the year since graduating.” So, that’s a little bit of how I got where I am.

So, now I am in D.C. I started off working at a Center for Independent Living in Ohio, focusing very specifically on local and state policy. And then for the last year, little bit more than a year and a half, have been in D.C. working on federal level policy in primarily infrastructure. And I think part of what has been really illuminating for the work that I do in COVID has been that these pieces from the beginning that, for me, always fit together. When I was learning about disability culture and accessibility and that, to me, led to this city planning, and then that led to this emergency preparedness. I talked to a lot of people who didn’t understand how these pieces fit together the way they did in my brain. And now that COVID has hit, suddenly I’m talking to people that have this very acute understanding of why transportation connects to disability, that connects to emergency preparedness, or why having accessible housing connects to emergency preparedness that didn’t quite make those connections before. I wish that it wouldn’t have taken a global pandemic for people to start seeing the reason that these connect. But it has, in some way, made some of these conversations a little bit easier when I try to explain to people that we need accessible housing so that we can deinstitutionalize populations and do Home and Community-Based Services. And how that connects to something like COVID, where we’re seeing thousands and thousands of deaths coming out of nursing homes and institutions, right?

COVID has made my work not only more pressing, but also it’s given people the visual, and unfortunately, the body count that we often need in our society to make change. I wish it was different, but oftentimes, policy does not change in the U.S. without that body count. And that is probably one of the most frustrating parts of doing disability policy, is because everything that I and so many other people that do this work are trying to do is to save people’s lives and to make people’s lives better. And it’s increasingly frustrating when people have to pass for somebody to take that change into account. But I’m hoping that at least some of these conversations are happening now when before, they weren’t. And that’s, I guess, the only kind of hope I can have to honor the people who have died because we didn’t make these changes sooner.

[mellow electronic music break]

CHRIS: Normally, the flow is accessibility becomes part of a job, or accessibility becomes something that we need to review after mistakes have happened. And so, the fact that you and your career started with this understanding of disability as a culture and as a community, and then letting that motivate your work and letting that motivate your interactions with people and the people that you’re working with, that, to me, is so dynamic. I mean, it sounds like that’s been helpful, but it’s also maybe, has that been difficult?

VALERIE: Yeah, it’s been a blessing and a curse. I think what it was for me that is different from a lot of people, like you said, that kind of accessibility is a function of their job and that’s kind of how they find it or things like that, is that for me, it was like I found this family, and I realized they weren’t being treated very well. And that was angering to me, right? And so, I think when I came into this work, I came into it more from this kind of activist mindset. I was fueled by being kind of mad that this home that I’d found and these people that I loved were not being treated the way that they should. And by extension, because as my body was changing, kind of learning that also this was affecting me in a very real way. But it also meant that I wasn’t able to maybe take advantage of certain kind of opportunities.

For example, I went through several series of interviews for like an ADA coordinator type position at one point. And it was very obvious that they wanted to hire me for this position, but they couldn’t get me to say the things they wanted me to say. Which is essentially like, you know, “The city’s gonna be right the majority of the time. And sometimes we really don’t have the money to make these accessibility changes,” or things like that. And so, throughout this interview process, they brought me back like two or three times. And they would ask these scenario-type questions. It was very obvious I wasn’t giving them the answer they wanted when I would say, “Well, you know, we could do this to provide an accommodation for this person!” And at one point, they actually just stopped the interview and said, “Well, you’re aware that this isn’t like an advocate position is it, right?” And I told them, “Well,” I said, “I think right now it still is. Because while we have the ADA, and we have these requirements, there’s also a lot of room for improvement.” And I was like, “So, maybe in 20 years, this will just be a compliance position. But right now, I think you probably have a lot of disabled employees for whom this is still an advocate position.” And then I never heard back. [laughs]

So, I think I take it as my motivation. But I think it is also because of that and because of that point of view that I come from, it has also made me unsavory to some of the people who have mostly or only been doing this as a compliance kind of, letter of the law mindset, where I’m not coming from that point. It has opened up tremendous doors for me. But it is, I think it’s also closed some doors and had some people not wanna listen to what I have to say, because I’m not strictly coming from that compliance point. Sure, I want compliance. But I also know our laws are very limited when it comes to actual community need. And I tend to be more concerned with community needs than kind of the letter of the law, which when you work in policy, when you work in the letter of the law, rubs a lot of people the wrong way. [chuckles]

The work that I do, because I kind of have to navigate the policy world, because I am doing policy work, with being disabled in a time like this—and I think this is for most disabled people—we are so often having to fight for visibility, for our value that I think it’s kind of an automatic posture to not be authentic and honest about just quite frankly, how hard things are sometimes. And so, I appreciate a space where people are able to talk about what it is to be disabled and existing right now. Because I feel like I go to work or I go to meetings, particularly because we’re looking at things like medical rationing and institutionalization and things that are catastrophic to people in our communities, that I can’t go into a room to do policy, to talk about our needs and also be able to say, “Actually, I’m really struggling right now. This is really, really hard, or this is really, really dangerous.” Because in some way, it almost feels like being honest with that message to some of the people that are doing this policy might bolster their claims that we don’t need home services or things like that. That maybe we would be better off in these institutions, right, if I were to be honest and say, “Actually, I’m really struggling right now.” Because that’s what so many people have decided is the solution.

And so, I appreciate the opportunity to be able to find a place where I can say, “Hey, I do have the strength to fight this. I am a valuable add to my broader community and society,” while also being able to say, “But also, you know, I spent all Saturday crying because my body was in pain and because this is really hard.” And that both of those things can be true at the same time and that those aren’t contradictions. And I think those are lessons that not only the disability community, but most marginalized communities have tried to teach, right? That interdependence is not a negative thing. And you can both be dependent on things and people around you. You can be sick or sad or any number of things that we’ve, as a society, sort of deemed negative and also be strong and also be valuable and necessary and important. And I’m finding that this COVID situation has really centered that for me. Because I’m finding more than I ever have in, particularly in my professional life, feeling like people’s lives literally depend on me only being able to show one of those sides. And that’s really disheartening because quite frankly, I think this is traumatic for everybody. You would think, if there was ever a time we could all just be completely honest about our physical health, our mental health, our emotional health, it would be a time where we’re all collectively going through something so traumatic. Yet it still seems to be the case that we can’t necessarily talk authentically about that.

JILL: In our strategic plan and our thinking about our values, we have that value that we can have a propensity for action, but an understanding for a different pace.

VALERIE: Yeah, yeah.

JILL: I appreciate that.

VALERIE: I’ve found myself being able to gravitate towards some of the ventures—my music, my writing—that I haven’t been able to do in a long time. But then, of course, there’s immediately that societal pressure that’s saying, oh, well, if you can’t leave your house, this should be the time that you’re finishing that book or you’re finishing that album you know? And it’s like, no, I need this so that I can sleep at night. You know, this is not me trying to reach that goal that I’ve been putting off for a long time. In fact, I think it might be harder right now to think about putting together a short story that I like than it was pre-COVID, right? But using it more as a going back home, right? And not having to look at it and being OK with it not being something that is a product, I guess. And just almost going back to that childlike curiosity of getting lost in making something for the sake of getting lost in making something. And I’m hoping that more people are finding kind of solace in that kind of stuff during this time rather than feeling that pace to have to produce.

Unfortunately, I don’t know that that’s happening, just based on the things I’m saying on social media and friends I’m talking to and things. I think a lot of that message is still well, this sounds to me like you just have more time, so do more. And not [laughs] not really understanding what the mindset might actually be of people and when things are kind of normal times, I feel like I would sit there, and all I would say was, well, I just wish I had more time to sit and think about this story or sit and had more time where I could spend just five hours working on music or something like that. But then if suddenly life feels like it stops for you, that’s equally traumatic. And so, I might have those five hours, but my brain is not in the same place it was two months ago when I was asking for that time, right? I don’t think we account for that sometimes when we ask for people, particularly in the professional world. Because so much of our system is based on constantly creating and making that output so that you can make profit. And so, we don’t give people time to adjust their pace, despite there being studies that kind of show that that pacing is really important and that you can get better quality if you allow for that pacing. It doesn’t kind of fit into the narrative work structure that we have, and I’m hoping that maybe COVID changes some of that.

I’m trying to be optimistic on what the sort of silver linings are of this experience. I know of a lot of people I’ve talked to, either students or people in the professional world, who have tried to get certain accommodations for years that now seem readily available, you know, to people or things like that. I’m hoping that understanding that people can work under different circumstances and different paces might be something that comes out of this and shows the kind of value in taking time.

CHRIS: And isn’t that interesting how activism and preservation and compliance can’t live in the same room, that those things have to be separate?

VALERIE: Mmhmm.

CHRIS: I think that’s such a fascinating and disappointing result of what kinda culture we’re living it right now. Keep being unsavory!

VALERIE: [laughs]

CHRIS: That’s all I’m gonna say. [laughs]

VALERIE: I honestly don’t know if I could be any other way. My parents joke because they really have no idea what I do. I think my mom at one point told me she just tells people that I’m a journalist because I write stuff, and you can find it on the Internet. But [laughs] my parents really have tried to wrap their mind around what I do and were just like, “I don’t know. You talk to people about issues.” I’m like, “That works.” Even when I was younger, my dad used to say, you know, “I’m so glad that you speak your mind, but I hate that I taught you to speak your mind because you just never be quiet and mind your Ps and Qs.” I’m like, “Well, you raised me to be that way.” And he’s like, “Yeah, well, if you didn’t disagree with me so often, it wouldn’t be a problem.” But [laughs] you know, so. So, I don’t think I can ever stop being unsavory.

That has even caused some issues within the community. Because when we go back to that conversation on compliance, some of the stuff that I’ve talked about publicly, some of the stuff that there’s some writing that’ll be coming out in a couple months that kind of touches on this issue. That problem also extends to within the community and why I’m so happy for and so thankful for certain particularly disabled artists, people that were involved in Sins in the Bay Area and disability Justice Collective. Because sometimes even within the community, we are so focused on obtaining and holding onto those kind of compliance-based rights that we don’t consider the fact that the country that we live in and the society that we live in still only really gives those rights to certain people. And so, if we’re not pushing past that within our disability community, then we’re really just modeling those same hierarchy structures that we see kind of in general society within our disability community. That has been something that’s been very hard for me to navigate as a Black and queer person in the disability community, to fight for some of these rights that I know really were never meant for people that look like me, people that inhabit bodies like mine.

And it’s not that I don’t want my fellow disabled people to have access to those, but that I want something bigger. That I want something more. That I want something that truly encompasses all of us, not just some of us, right? Not just straight disabled people or white disabled people or male disabled people. And I think sometimes, because we can see what kind of the general population has and we know that we’re separate from that, but that’s what’s all around us, our brain is to try to get to that place, not to get beyond that place, right? And so, sometimes even having those conversations makes me a little bit unsavory, even within the disability community. I remember being on a panel once with two amazing disabled Black people, Azza Altiraifi and Talila Lewis. And by the end of that panel, I think we all thought that we were gonna need bodyguards to take us out of the room because there was some very, very [laughs] unhappy people! But then there was a lot of people that came up and said, “You know what? I really needed to hear that because I don’t ever think about it that way. I only ever think about these are the rights that we have as people living in the U.S., and they’re not being met and don’t think about the fact that maybe we should be thinking even beyond that as a community. And that that’s important to make sure everybody gets what they need.” So, you know, there’s pushback, but there’s also breakthrough in the unsavory, right?

[mellow electronic music break]

JILL: What are you seeing and hearing with regard to people with lower income and other minority? You know, we like to think about the intersectionalities, and you’re bringing that up in your own identity. But in the country or in the world, however

VALERIE: I think what COVID has done, and I kinda mentioned it before, has really just put a magnifying glass to the inequities we already had. I think this may or may not have changed now. But my parents recently moved to St. Louis a couple years ago, and I just think last week, I saw an article that came out that was saying the only people who have passed in St. Louis from COVID have all been Black people, you know. And so, I immediately send a message to my dad, who’s considered an essential worker. He’s still out there working every day. And was like, you know, “Please be safe. Please wash your hands. Do what you have to do,” because particularly if you exist in one of these marginalized spaces, you’re aware of the inequities. And many of us, whether or not you live in one of these marginalized spaces, are aware of the inequities we have in the U.S. And I think what COVID has done is just really kind of blown that up so that it’s very, very hard to ignore.

And so, I think it goes back, particularly when we talk about the disability community and disabled people, they often are in these same spaces as other marginalized people, whether that’s people of color, whether that’s low-income people. We’re seeing right now the Indigenous community, while the numbers might seem low on a scale of everybody, right, you say 13 people. Well, that doesn’t seem like much. But when you’re 2% of a population, and when there are maybe a couple of hundred people that live on your reservation, 13 people being sick or passing, is that is such a huge number to your community, right? And I think that’s something that we very, very much can understand as disabled people, even though we are a huge population.

There’s kind of that joke about, “Oh, well, you have X, Y, Z disability. You must know this other person who also has that.” And on one hand, you laugh, and you’re like, “That’s not really the way it works.” But in the back of your mind, you’re like, oh, yeah, I totally do not know that person. [laughs] You don’t wanna say that, but you know, so. So, when we start seeing these deaths in our community, it resonates. When we talk about Indian Health Services, that we talk about the underfunding and the way that Indigenous people are being affected by this, we can see direct parallels. And that’s not to say that if you’re disabled, you’ve experienced what an Indigenous person has, because I don’t wanna make that correlation. But I think we can see similar stories, and that should be something that allows us to have a solidarity with people who maybe aren’t experiencing the bodymind changes that we are, but are experiencing a similar type of oppression. That we should be able to cross those lines and say, “Hey, there are ways that we might be able to learn from each other. There are ways we might be able to support each other.”

And I think that that’s something we’re seeing a little bit with like low-income and disability right now. There have been several, all over the country, these mutual aid groups that are popping up that are trying to provide services. And I’m helping with a few in D.C. But what I’ve seen that I find so amazing for so many of these mutual aid groups across the country is that without having the language, without having, you know, maybe they don’t know about our fights on identity-first or person-first language. They don’t know about ADA accessibility laws because they’re a bunch of grassroots volunteers. But they’re saying, “Hey, we wanna put together this Facebook group. We wanna make sure everybody’s included. How do we make sure we get stuff to people who are disabled? How do we make sure we get stuff to immigrants?” And maybe they don’t have the scholarly language, but they’re doing everything they can on the ground to create these relationships. Because they recognize that there are certain things—like housing, like access to food, like getting masks—that affect everybody that’s sort of on the bottom of this hierarchy. And that we all need access to these things and doing their best to make things accessible.

And so, I think that, if anything, what I’m hoping we’re seeing and learning is to get rid of maybe some of the gatekeeping that we’ve had that stop some of the solidarity because somebody uses the wrong term, right? Or because somebody doesn’t know the exact way to be compliant or doesn’t get it right, right away. Because the truth is that housing isn’t only a problem if it’s not accessible. It’s also a problem if it’s not affordable, right? Institutionalization doesn’t only happen in nursing homes, but it happens to people in prisons, right? Things like sub-minimum wage. So many of the fights that we have, both within COVID and outside of it, other people are also having in different spaces. And we might not call it the same thing, but we’re experiencing it the same way. Whereas I might end up in a psych ward or in a nursing home because I can’t move my hips anymore, maybe somebody who looks like me but doesn’t have a mobility issue ends up in prison, right? And so, we have different names for these things, but they’re the same kind of end result, right? And so, I’m really hoping that some of those walls are being broken down to see that our fights maybe aren’t the same, but the harm that we’re experiencing is very similar. And in that way, we have things that we can learn and teach each other and freedom that we can gain by coming together in those different marginalized populations.

And then because of those intersections, a lot of times we exist in multiple of those spaces. We are poor and disabled. We are, you know, immigrant and Black or whatever it is. And that nobody exists in just one of those spaces. And that’s actually been an oddly hard conversation to have sometimes with my disabled peers, is that I am both Black and disabled. And both of those are part of my identity, which means I’m gonna fight for both of those issues. And that I’m hoping and asking that those who are my allies and my siblings in my disability fight will also be my siblings in my fight around queer issues or around anti-Black issues or around poverty issues. And sometimes that’s hard because you’re already going through a lot. And fighting, if we can just be honest, is exhausting. And sometimes I just wanna take a break, and I don’t want to fight about an issue that doesn’t touch me directly because I’m tired. That’s understandable, too, right? It goes back to that pacing thing. And it becomes very hard.

But even if I’m not poor, the people I love are, which means that’s my fight, too. And the people I don’t know are, which means that’s my fight, too. And sometimes that’s all a little bit easier said than done. But it’s how I hope to live my life, and it’s how I hope to model that so that other people can find strength in that. And so that, when I do get too tired and I need to take a break, there’s somebody else there that’s also doing that work. And then when they get too tired, I’ve got some rest and can come back, you know. Especially because if you’re somebody who’s living particularly in those kind of low-income spaces, we’re seeing this a lot with the people that we’ve thrown this fancy title of “essential workers” onto this COVID experience. And I was having this conversation where it’s like when haven’t we sacrificed these very people that are being sacrificed right now as essential workers for the sake of bettering the economy, for the sake of bettering profit, or what have you? They’re the same people that’ve always kind of been the throw them to the wolves people. And so, those are our people, even if we don’t necessarily see that they’re our people. Hopefully, we will start to learn more. And hopefully the kind of system and infrastructure problems that COVID is highlighting will break down some of those silos that we’ve created that say, well, if you’re not disabled and you’re just poor, then your issue isn’t my issue, even if I’m a poor, disabled person, right? Because it is.

CHRIS: DisArt and our work, we are primarily in the world of imagination. We are trying to help people think differently. You have taken on the hard job of not only changing people’s imagination, but changing legislation and changing systems, right? So, I feel like our work is tethered to one another. But I also would love to hear how you approach the issue of disability consciousness and awareness and understanding from that sort of legislative platform. That’s something we all need to learn, really.

VALERIE: And it is so hard. I rely a lot on the imagination—that’s a good word—the imagination, the creativity of artists either that I know personally and kind of soak up their way of thinking outside the box through like osmosis or whether it’s media that I take in. Because it is extremely hard to think about a world that maybe doesn’t exist. And it’s especially hard when you’re looking at legislation because it’s working within the system, and it’s working within a system that, at least for me, I very fundamentally to my core, think doesn’t work. And so, it’s being OK with the small wins, which is sometimes much easier said than done and gets really tiring very, very quickly. It’s about finding that little bit of imagination in everybody else. And sometimes, that’s a really small step because we are so steeped in what we know, what we’ve been taught. So many people, particularly at the federal level, but you see this kind of local, state, federal have been doing this so long. It’s maybe what they studied at school. It’s what they’ve been working towards for however many years of their life. And it’s what they know. And so, to show up and say, “Hey, what you know or what you’ve been working on for 30 years still isn’t good enough,” is kind of a shot to the gut for a lot of these people, right?

But also, so many people I’ve met in legislation, whether it’s somebody I agree with or not, a lot of them truly have come to this, at least originally, in a place of wanting to do better for people. And so, even when I don’t agree with somebody’s political ideals or their way of going about something, generally, we can at least find common ground in we’re trying to make things better. And so, I think grasping hold of that and then trying to find the ways in which you can impart kind of that vision to somebody else not only helps you make some of those small wins, but it kind of, with some of them, it’s infectious, right? I don’t know how many people I’ve talked to simply about accessibility issues that they never thought of before. And then once they know that, it doesn’t go away. They can’t stop seeing it every place they go. And so, I think sometimes just imparting those little nuggets into people, they take it with them. And then they give that nugget to somebody else, and it kind of grows that way. But it’s very, very slow going.

And with legislation, so much is patience and a small amendment here, a tweak of a word here. And then because of just the way life has been the last several years, so much has been defense. It’s been protecting things that we thought we were done having to protect. Just because of my age and the time that I came into this, so much of my career has been protecting things, fights we thought we didn’t have to fight anymore because people don’t want them anymore. And so, protecting those ideals. But as far as moving that needle in legislation, I think everybody has a little bit of optimism and utopia inside of them. And it’s reaching in and accessing that and saying, “OK, I know you don’t think that we can do even something that seems as basic as universal healthcare, right? I know you don’t think that it’s possible or plausible to have healthcare for everybody. But I know that you think your grandma should be taken care of.” Let’s grab onto that, and let’s pull on that bit of creativity. If you have enough in your mind to think of a way that all the grandmas of the world should be taken care of, then I can work with that, right? Because if you live long enough, you’ll get to that age, whether or not you become grandma, right?

So, it’s finding that nugget of sameness and sort of teasing out the creative ideal that you’re hoping to accomplish. And sometimes that works really well. Sometimes it doesn’t. But it gives, I think it resonates with people in a way that they then chew on that a little bit. And maybe they are a little bit more lenient on that next bill that they’re working on because they remember, well, you know, this wouldn’t work really well for grandma. So, maybe I should change that, right? But because it’s that kind of one-on-one thing, it is a constant uphill. And it is a constant slowness. Things like this move that forward.

I remember one of the first big healthcare things I worked on was right around the time that ADAPT was doing the die-ins. And just the image of that for so many people, I think it was this visceral thing that they could not shake afterwards. And I think that’s a lot of making legislative change, is providing some kind of information, some kind of image, some kind of idea that no matter what bill that they write or vote on afterwards, that image is gonna be there. And it’s gonna influence that decision. And that will get us one step closer to a decision that benefits all of us. I think if I could have it my way and didn’t have to worry about paying bills and making sure my husband has medications that he will die if he doesn’t have them, right? If those things weren’t concerns, I think I would be a ton more aggressive. I’m learning a lot about some of the frustration and dissatisfaction I think that I have in doing legislative work is the pace, not the pace personally, but the pace at which change happens. And I know that I would be a lot less patient if I didn’t have to get a paycheck. [laughs] So, but all things considered, I think I’ve gotten a little bit better in myself with saying, OK, this was a small win. I’m gonna go home and celebrate this, even if it’s not what I was hoping for. It’s a step in a direction that I’m hoping that we all move. And kind of being able to swallow that.

And it was hard at first. You know, you come out of the gate, and you have all these big ideas of what you want the world to look at. And then everybody laughs at you and turns the other way. It’s a harsh, harsh lesson. But I think being connected to my community and making sure that I’m connected to grassroots efforts and activist efforts allows me to have a space where I can be that more radical and kind of get that out, so that I could go to that professional meeting, you know, in my tights and skirt and not yell across the table when I’m saying, “Why aren’t you getting this?” I can save that for my call after work hours. [laughs] So, that helps me keep that balance.

[mellow electronic music break]

JILL: Part of this project is to get immediate reactions and response. So, when we were interviewing people a couple weeks ago, we were talking about different things that we made today. And the things that we’re seeing in the news now are the protests about going back to work and opening up the economy. And I’m curious if you would be willing to react to that immediate action.

VALERIE: Yeah. [heavy sigh] So, this goes directly back to OK, am I putting on my skirt and tights or my [laughs], my angry?

CHRIS: Yeah. I would say skirt, tights and maybe military boots.

VALERIE: [laughs] OK.

CHRIS: Like, you know, you can do it all together.

VALERIE: I like this! [laughs]

CHRIS: Yeah. You can do it all at the same time.

VALERIE: I think that people have very real concerns. I have a fairly large family. Right now, about 50% of them are not working. And so, when I hear about people being worried about the economy, I think there are people who are very, very legitimately worried about where they’re going to get their next meal, how they’re going to keep a roof over them and their family’s heads. Going back to that being creative piece, though, part of that worry comes from the fact that we are so entrenched in this idea that those are things that can only be available if you have money in the bank. And because we have built our society to function that way, people feel the need to go out and protest so that they can have a roof over their head, rather than having this realization that the houses are there, and the food is there. We really are at a point where if we could reach out and get just that little bit of that creativity to move just a little bit of beyond, we could make sure that people had access to those meals and access to the homes that they have while also being able to stay safe and practice their physical distancing and stay home with their kids and do what they have to do.

Unfortunately, I think a lot of kind of the pictures I’ve seen, the articles I’ve read, the people who are actually out there protesting are the people who have the time and the funds to do it and seem to be the people who are actually least affected by some of the situations that we’re going through! And are actually just quite realistically making life more difficult for the people who have legitimate concerns as far as the economy being closed: the people who are worried about where they’re gonna get their next paycheck, or the frontline worker who’s making $7.50 bagging groceries and now can’t get to work because you’re blocking the streets. I saw, just this morning, somebody shared a picture of a lady whose sign said, “I need a haircut.” That’s why you’re out here blocking hospitals? So that you can go get your hair cut? I think those people specifically that are out there fighting for entitlements are protesting because they’re feeling maybe a level of discomfort in their lives that so many of us live day in and day out.

And all I can hope is that, when the time comes to have this conversation, when the time comes yet again to talk about accessibility, when the time comes to talk about access to services, when the time comes to talk about minimum wage, that these people remember how uncomfortable they felt, that they felt the need to go out and protest because they couldn’t go see their hairstylist. Because they couldn’t go to the movies. Because they couldn’t go out to eat to their favorite restaurant, or they missed their favorite band in concert. That when I try to talk about why somebody should make a living wage, they remember that bit of uncomfort. That when somebody talks about what it felt like to not be able to go to their friend’s birthday party because they couldn’t get into that restaurant, they remember what it felt like having their birthday on Zoom, right? That this is day-to-day life with our regular day. That you didn’t go to a march in Baltimore or in Ferguson when you were just saying, “Comply with police.” And now when they’re telling you stay home, you’re out here on the Capitol steps with your gun, right?

I hope that we will be able to hold a mirror to these people and say, OK. Those six weeks, those eight weeks that you were supremely uncomfortable, now vote and put your money into places that make sure that people don’t have to live that 365 days a year. Because so far, you haven’t been voting and supporting in that way, right? It’s angering. It’s frustrating. I know somebody who has been trying to go to work in Baltimore, and as an immigrant, a Latino immigrant person, the last place they wanna be is trying to cross streets to go to work with these people that are out in Baltimore right now, right? And so, that kind of thing makes me want to go out and yell and say, “You’re not getting it.” But at the same time, I’m like, I just hope that when we start having rational conversations about this, when we can sit down at a table and actually talk about this, that you’re gonna remember just how uncomfortable you were. And that that’s gonna be another one of those nuggets that I can tease out and get some of these creative outcomes from, to say we don’t have to live this way, right?

But yeah, my initial reaction to this was to save what economy? The one that just had to be bailed out two weeks ago because it can exist with us not working? That’s what you’re protesting to go back to work on? This one that we’ve told you for a long time really isn’t for us, for your average person? I hope this is bringing out the commonality and will bring out the commonality in the fact that so many of these people that maybe they aren’t rich, but they aren’t poor, right, the upper-middle class people that we might be seeing at these protests, you have way more in common with kind of us here at the bottom than you do with the people that you’re protesting to keep doors open for, right? I think it’s also been a really sad reminder for some of us just how little value we hold intrinsically. That my life or my husband’s life as a immunocompromised person is less important than someone’s haircut. And unfortunately, that’s also been a really disheartening reminder. But I’m hoping that I can take that and sit with that and use it to continue to fuel me to do what I do.

CHRIS: Yeah. Yeah. We need people like you, Valerie, and like a lot of the people we’re talking to, who can make it [laughing] uncomplicated.

VALERIE: Yeah!

CHRIS: You know what I mean?

VALERIE: We’re trying. [laughs]

CHRIS: Yeah! Yeah. I think that’s our job. Like it’s our job to sorta try to make it as uncomplicated as possible, but yet preserving the complexity [chuckling] of the disabled experience, right?

VALERIE: Right.

CHRIS: Oh, there’s a lotta work to do. Yeah.

VALERIE: It’s a lot of work to do. And sometimes it feels never-ending. But, you know, I try to find those silver linings where I can. Tragedy and stress and heartache is also growth. And I’m just really, really trying to be optimistic and kind of fingers crossed that this will be a time for a lot of growth that our policy structures need to push us forward towards the world that, in my brain, I know we can have. The world that we can see in our art, right? I’m just hoping that this will be a push to get us there. Because I feel like all this heartache and all this struggle and death and pain, there has to be something that blooms from this to honor the people that we have and will lose through this.

[mellow electronic music break]

JILL: What else would you like to share?

VALERIE: I have survived this because of art. Because of books and video games and music and writing and even just kind of the COVID art that people have been coming out with, you know, covering songs and recreating classic paintings with their towel robes. That laughter, that ability to leave the present and go someplace else, I think not only me, but I think most people, so many people have been able to keep their spirits up and intact because of what art does. And I think that’s the other side that I’m hoping comes out of this. We’d really gotten to this point, particularly in education, where everything is so STEM-focused and that we’ve kind of lost the really life-giving nature of art in all its forms. And I just hope that, in some way, this can be encouragement to those people, particularly disabled artists. Because I think we are collectively as a people still pushing forward because artists create art. And I hope that as much as the activists keep doing what they’re doing and the policy people keep doing what they’re doing, that just as important, if not more important, is that the artists keep doing what they’re doing. Because if I couldn’t come home and take pleasure in those things, I don’t know that I could still be doing this, you know.

[mellow electronic music plays through the next few lines]

So, I think I just, I wanna say a thank you to the people that are creating, whether or not they’re creating through this. Because they might not be. It’s very hard. I think many of the people that I get to work alongside would not be able to get up every morning and do this if they didn’t have that art to take joy in when they come home at the end of the day.

JILL: Thank you.

CHRIS: It’s just such a pleasure to spend time with you. Thank you so much.

VALERIE: Yeah, this was wonderful. Thank you so much.

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.

Music: “I Am Running Down the Long Hallway of Viewmont Elementary” by Chris Zabriskie. (Source: freemusicarchive.org.  is licensed under a Attribution License.)