Episode 49: Zosia Zaks (click for transcript)
Interview Date | April 30, 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.
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ZOSIA: I’m Zosia Zaks. And currently I am Manager of Programs and Education at Towson University’s Hussman Center for Adults with Autism, where we have some programs for autistic adults, and we pair that with education of the students. There is some clinical education going on. So, some of the students are graduate students, and they may be aiming to become Occupational Therapists or Speech-Language Pathologists. And so, they’re there at the center practicing, essentially, under the supervision of their clinical professors. But the vast majority of the experiences are with the students I teach. The undergrads that I teach are in a Diversity course. Towson University requires all the undergraduates to take a course in diversity issues. And this is one of them that can count. And essentially, we’re looking at Disability issues through a social justice lens. And then they go up to the Hussman Center, and they’re participating in the programs with the autistic adults. And the idea is to break down barriers and to impart in the students the ability to challenge their stereotypes and to confront and sort of unpack their implicit biases about Disabled people. I mean, hopefully they’ll take those key skills of recognizing their implicit biases when they come up and challenging stereotypes and questioning what society’s doing about all marginalized people, but Disability is the example. I guess you could put it that way. That’s the example that we have up at the Hussman Center.
We’re not a service agency. And I always have to make that distinction for the adults who are coming to the Center because they might think that we’re one of those employment support agencies or Community Living Skills Center, and we’re not. It’s independent. It’s part of the university. So, we’re not geared up to, for example, provide someone with wraparound employment support. It’s different. It’s an opportunity to be with peers your age. And I always say the autistic adults are the leaders. And I think a lot of times my students come into the class, and they think they’re doing some kind of volunteer class where they’ll go help the poor Disabled people up at the Hussman Center. And then I get to flip that on its head. And they always walk out saying, whoa. You know, I learned more from them. And I’m like, uh-huh. Yeah. That was [chuckles], that was the secret idea. So, I do think what we’re doing is effective. You know, I see this in the students’ writing and in what they tell me: that they do really come to question why they haven’t been integrated with their Disabled peers their whole lives and why they just have these very ingrained ideas.
The beginning of the programs, they’re always trying to help. They’ll try to overhelp. So, if they’re making grilled cheese sandwiches or something, and one of the autistic adults is standing there and their sandwich is burning, the undergraduate students always wanna leap in and prevent the sandwich from burning. And I’m like, no, don’t. They have a civil right to fail. Of course, if the kitchen’s burning down, that’s like a different conversation. But, you know, leave people alone. Let them learn. Let them figure it out. And how do you know? Maybe he likes burnt sandwiches, you know. Or maybe he doesn’t know if he likes it burnt or not, so now he’ll find out. So, like you’re disrupting his natural learning that he has a right to do. I mean, if he asks you for help, that’s a different conversation, right? We do help each other. It’s not wrong to help each other, but it’s not presuming incompetence. You know, that’s the problem. So, that’s the kind of conversations we have.
They’re in the programs, and then they’re in the classroom with me. And then after programs, there’s a that they all have to participate in. So, that’s where we’ll talk to them about what was going on and what they saw. And there’ll be like a topic of the week to help kinda guide that learning because they don’t really make those connections automatically. You really do have to have that reflection time with them. So, that’s kind of what I’ve been doing at the Hussman Center.
I’ve worked with autistic adults and people with other Disabilities for a long time, probably about 17 years or so. I’m trained as a Certified Rehabilitation Counselor, which a lot of people in the Disability community will know what that is. But interestingly, outside the Disability community, nobody’s heard of us. And I did work in the state Vocational Rehabilitation system for a while. You know, that’s a messy system, and there’s pros and cons. And there’s good people in there, and then there’s people who I’m like, why are you here? But that’s, you know, I think any human organization is gonna have its pros and cons and its growing pains. Arguably, VR was designed for a very different society, in a very different time. And it can take large systems a long time to catch up. But anyway. So, I was there when I was in graduate school and then a little bit afterwards, but then I kind of started. How I got started at the Hussman Center is they wanted to do more employment-related programing. That’s been a strong interest of them for a long time. But it wasn’t going well, so they asked me to come in and consult. And I guess I did a good job ‘cause they asked me to just manage the whole thing. [chuckles] So, I said, OK. So, I’ve been there since about 2013.
I have written some and worked over the years with the ASD folks in New York City, the ADS Nest folks. Some occupational therapists at NYU have partnered with New York City’s Department of Special Education to create sort of a model for classrooms. The term they use is “reverse integration.” They have students on the autism spectrum come to the regular classroom with their Special Education teacher. And then the Special Education teacher in the regular education teachers are taught how they can co-teach in an integrated way. So, it’s a great model. But anyway, to make a long story short, so I’ve helped them over the years develop some curricular materials around topics like self-advocacy.
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CHRIS: That’s so cool. What a great vocation narrative. I love that. what I love about what you said is, you know, people have a civil right to fail! And I think, oh, my god! If that could be a t-shirt for our community, that’s it, man! Can you talk more about that? Because I think that’s an opinion that actually, in today’s climate, might be thought about as sort of anti-American, you know, God forbid. As an educator myself, I know that failure is when learning happens, right?
CHRIS: But the right to fail is really, I don’t know, I’d like to hear more about that.
ZOSIA: Well, what my thinking on the issue is that it seems to me that we sort of disallow Disabled people that same process, as if they’re not human beings. I think that’s what it comes down to, is when we’re not seen as human beings, then we don’t get to have the full bandwidth that other human beings have. So, you know, there’s an 18 year old, no disability. They get some job in the summer. They’re terrible at it. They show up late. They’d rather go to the pool with their boyfriend. And they’re like, “Well, you know, he’s 18.” Disabled person does that, they’re like, “Oh, he’s unemployable.” [laughs] It’s like, but wait a second. He’s 18. He’s got the same 18 year old-ness as other 18-year-olds, you know. And I think that we’ve got some idea in our head that if a Disabled person is having a problem or struggling with a grilled cheese sandwich or does terrible at a job or something like that, that that’s like this outrageous crisis, and we have to rush in and help where it means they can’t do things. No, they’re just a person figuring out what they’re doing and how they’re gonna do it like everybody else. You know, somehow we have stigmatized learning in Disabled people, and that’s a big problem.
When I talk to my students, I ask them if they are equally good at all aspects of their life. And all the years I’ve been doing this, nobody has said yes. So I say, OK. So then, in other words, you’re still learning some things? Oh, yeah, yeah, yeah. OK, well, then how come Disabled people can’t be learning some things? We’re like, oh the disabled people have to learn skills. Well, guess what, non-disabled people are learning skills, too. It’s just embedded in their trajectory of their life journey, and so it’s considered, OK, that’s normal. That’s not stigmatized. But Disabled people are doing the same thing, but somehow, it’s gotten stigmatized. I may be learning X, you may be learning Y, OK. But, I mean, we’re both learning. That’s what human beings do.
JILL: Yeah, I really appreciate your insight and am thankful that you are teaching because it doesn’t happen at every university or college or high school.
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JILL: I’d like to think about what is life like for you and for your students and for the adults in the program now, with COVID-19.
ZOSIA: Well, it certainly has upended usual routines and the usual way that we’re doing things. For the autistic adults, what we tried to do with some degree of success is move our programs online. Not all of them wanted to try the online version, and we certainly couldn’t do all the same activities that we were previously doing. But they have said to us that they appreciate some opportunity to connect. You know, there’s a stereotype that autistic adults are not interested in human connection, and that’s not true. It may look different. They may need accommodations to do it. But again, it goes back to that we, as human beings, we have more in common than not. You know, there’s kind of a human template. So, I digress.
So, we’ve transported most of the programs into a shortened online version that they can participate in if they want to. And it looks like we’re gonna do our programs for the summer online as well. So, that may look like, for example, we have a fitness program and they come in to a gym in our building and they work out together and they go out on the machines together. They might also do something like foursquare together. Well, now that’s not happening in person, but the teacher can still go onto one of these platforms and lead a workout, so people are working out at home.
Now, my students, some of them are joining those online virtual versions of programs. But because the switch was so abrupt, and I think that a lot of the students are coping with a lot of stressful situations, we didn’t require it anymore. We just said, OK. The service learning part where you’re in the programs with the autistic adults is just ending early. And you’ll do some more classroom work than we would normally do to compensate. So, that’s been hard because I think the students were just starting to get going. They were there about three weeks. The typical format is they’re in the classroom with me a few weeks, getting some of the foundational concepts. And then they start the service learning part where they join one of the programs for 10 weeks.
The Center runs these programs 10 weeks in the fall, 10 weeks in the spring. So, the typical format, for example, fitness, like I was just talking about, they will meet for an hour and a half in the gym. And so, the autistic adults and my primarily neurotypical students work out together, and then the autistic adults leave. The students stay, and they do a half an hour debrief with the instructor. And our instructors are not necessarily experts in autism either, you know. They may be an expert in fitness or an expert in cooking. So, I always say it’s like a partnership of learning. So, they’re learning along with the students. So, if the topic of the day is stereotypes, and so they’re looking back, you know what happened today? Oh, I was on the fitness equipment with somebody, and I thought they wouldn’t be able to do it. And then they actually knew how to do it better than me, and that relates to this stereotype we were talking about in the classroom. So, that’s where a lot of that reflection comes in and where they make those connections to the course concepts. That’s very, very hard to do in a virtual format. It’s not impossible. And if we’re still in these conditions, we’re gonna have to figure it out for the fall.
In the summer, like I mentioned, we do have a smaller scale, sort of four to five-week, session in the summer, but the undergrads are typically not around. And that’s where we’ll have students who are in, you know, they’re entering a doctoral program in Occupational Therapy. So, they’ll have a chance to have some experiences in the summer. So, that’s gonna have to be virtual, too. So, we’re trying to work it out. I think the autistic adults have expressed to me feeling, as you mentioned in the beginning, Chris, not well listened to, you know. There’ll be these memes online or jokes or whatever they are, I’m not sure: this must be so easy for autistic people ‘cause they get to stay home. And comments like that, that can feel very dismissive because it’s sort of not considering the full range of experiences. Some people may be happy and feeling less stressed out and more comfortable at home, but others are really struggling. It’s a very individual situation depending on what’s going on. So, they’ve, by and large, been very happy to have some opportunities like these virtual workshops we’re doing where they’re accepted and they’re listened to and they have some chance to connect and still do some activities together.
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CHRIS: You know, there will be people listening to the podcast who may not know a lot about autism or what some refer to as people who live on the spectrum, which is a vague way of talking about a group of people. I wonder if we could just talk a little bit more high-level about what a disruption like COVID-19 has the potential for, for people who have neurodiverse experiences? Again, we can’t speak for the whole community, but in terms of what you know and in terms of what you live, what does a COVID-19 cultural upheaval, how does that affect people with autism, this disruption of schedule?
JILL: If you wanna start with what is autism and what language we should be using, that would be helpful as well.
ZOSIA: Sure. Generally speaking these days, you’ll hear people say, “I’m an autistic person” or “the autistic adults,” which is identity-first language. And not every single self-advocate prefers it, but a lot of self-advocates do prefer it. They don’t like the person-first language. The person-first language was actually developed to be very empathetic and caring, for example, if you say, “person with autism.” So, you’re implying they’re a person first. But some self-advocates take issue with that because they say it sounds like you’re separating the autism from the person’s identity as if it’s a bad thing. If you’re a person with cancer, you wanna get rid of cancer. But if you’re say, Catholic, you don’t say, “I’m a person with Catholic-ness.” Because there’s no shame in it, right? You’re just, you’re a Catholic. Has this been resolved? No. So, we tend to just go by the system that the person prefers. So, that’s the debate with the identity-first versus person-first language.
Then there’s the whole Asperger terminology. And again, not across the board, but quite a number of self-advocates are moving away from using the term “Asperger’s” or “Asperger’s syndrome” because new historical information has come out, and we realize now that Dr. Asperger was in collaboration with the Nazi regime and had some connection or involvement with their T4 eugenics program. So, again, not 100%—I can never speak for 100% of autistics—but many people have issues naming something after somebody with a history like that. And it went out of the DSM anyway. The DSM is the manual that mental health professionals and clinical professionals use to diagnose people. There’s also the ICD, and that’s used outside the United States. And to my best understanding, Asperger’s syndrome has been moved out of that, too. So, we may see less and less of that terminology.
Another language piece that I’ll just throw out really quickly, is you may hear people just say, “I’m neurodiverse” or “neurodiversity.” And what they’re talking about there is I think there’s a nascent movement to recognize commonality among many different conditions. So, when I talk to younger people—and this may be a generational thing, too—but when I go talk to middle schools or high schools, and I’ll start talking about autism, and I’ll mention some neurodiversity. And then I have folks raising their hand, and they say, “Well, you know, I have dyslexia, so I’m neurodiverse. I have ADHD, so I’m neurodiverse.” It’s almost a community feeling that whatever your diagnosis is, you’re part of this group of people who think and experience the world differently and want the way that they think and feel and process to be validated. That it’s not a shameful thing, it’s not an embarrassing thing, it’s not a negative tragedy. There’s different ways of cogitating and different ways of feeling and different ways of relating, and they’re all valid. So, out of this neurodiversity movement, you’re seeing a lot of cross-community connection. So, you may hear people say, “Oh, yeah. I’m neurodiverse,” or “I’m part of the neurodiversity community.” You say, “OK. Well, what’s your diagnosis?” And it could be a whole range of conditions. So, that’s my spiel on language.
So, that’s why oftentimes, you’ll hear me. I use identity-first language, and I may also sometimes just interchangeably say “neurodiverse people” or the “neurodiverse adults at the center.” Most of them have been diagnosed with autism, but some of them haven’t. Some of them have Down syndrome. Some of them just have intellectual disability. Some of them have learning disabilities. They all find meaning in participating at the Hussman Center. We are a center for autistic adults, but we do have diversity even among that.
So, then back to your original question, which is, OK, we’re in this cultural shift with COVID-19. I think a few things. Again, I keep repeating myself. It’s hard to make generalizations because I do think there’s a wide range of experience. But I see patterns. So, I’m speaking to patterns. And some people will say, “I don’t relate to those patterns,” but I think a lot of people do. So, one pattern on the one side, I see some things that are maybe kind of in a negative category. So, a lot of neurodiverse people do rely on a structure to the day, and they do really benefit from knowing what’s going to happen. And so, right now, that’s very difficult for them. They may have been going to a support agency, and they had a day built out for themselves. And now that’s gone. And so, that can be very, very stressful, and it can be very anxiety-producing. Now, if you can make new routines and have opportunities to connect and still work on goals and do all the things that you wanted to do, you know, that can help with the stress level. But I do think that that’s been very stressful for a lot of our adults.
And I think there’s also concerns, too, because we don’t have answers to a lot of questions. For example, the funding streams are in flux and vulnerable. So, for example, if you go to an employment support agency during the day, and you’re funded by the Developmental Disabilities Administration, what’s happening with that? What is that gonna look like? Because you can’t go to a physical place. And the folks who may be supporting you, whether that’s a job coach or an aide, they can’t do that in person right now. So, what system is gonna be there? We don’t even know. Like how is this gonna work over the long-term? And we may get through this, and then we may have cycles of disruption. So, how are we gonna deal with that as a system, right, as a disability system? So, I think that that’s got people worried.
On the other hand, now I’m switching gears, and it’s not to dismiss per se, like I was talking about earlier, I think autistic people value very much connections and relating to other people in the different ways that they do so. What’s interesting is that now, neurotypicals are sort of getting a flavor of some of the frustration when you can’t connect and you can’t relate to people as much as you want or in the ways that you want. And so, like you could think of Zoom, for example, as an accommodation, right? So, Zoom is an accommodation that’s enabling people to stay in touch and still have meetings or still play games together over Zoom or just check in with one another. And so, I think this is a moment where Disabled people could say, hey, you see, you got an accommodation to help yourselves socialize and do the things that you wanna do. We’ve been asking for accommodations for years, and you guys won’t give them. So, you see? This is what we’ve been saying: when we get accommodations, then people can do all the things that they wanna do. So, hopefully that idea of social accommodations, if I could put it that way.
I talk to my students a lot about attitudinal accommodations. We also will say, here’s another example of a social accommodation you might see at some events or conferences now instead of clapping, they’ll wave their hands in appreciation in case people have sensory issues because clapping can be very hard for people. So, that’s a social accommodation. So, maybe now people will be more open to that concept of the social accommodations that we all need to get our social needs met. That might be a point, an opening point for a conversation around that: what social accommodations can we creatively come up with so that more people can be included, more needs can be met, more relationships can happen? Whereas in the past, I think Disabled people were left out a lot because the world just went the way neurotypicals needed it to go. Now, that’s been upended, we have a moment where we could sort of ask that very important question and maybe be more inclusive going forward.
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JILL: When you think about going forward, how do you envision that happening? These conversations that you’re suggesting need to happen or changes, systemic changes, that need to happen, where do you think the starting point is or the continuation point?
ZOSIA: That’s a huge question, and I think it pulls in more than just Disability issues. There’s so many layers to it, I’m not even sure if I could answer it in an afternoon. And then it ties into a lot of environmental justice issues, too, which are connected to labor, which is connected to Disability, which is connected to race. I mean, all of these things: it’s that idea that theories around intersectionality. So, it’s very hard for me to divide it up and say, oh, well, this is the one thing that we need to do next, or this is what’s gonna happen next. There’s so many things that need to happen and that need to involve so many voices if we want to turn this into an opportunity instead of just a tragedy.
CHRIS: I think you’ve really pinpointed something that we all need to be thinking about, and that is in this moment of pause and crisis, that the issues that we all work on together, there’s a way in which intersectionality, while it’s so important for all of us to know, it can seem very daunting because of what you just said, right: this idea that everything is connected, right? And so, what I used to think is, if we work on this part, this part of the issue that we know about, right, or that we have something to say about, that hopefully that would trigger other things. But what you’re saying is, we can’t partition ourselves off anymore into one territory or one topic or one community because they’re all connected. I think that’s heavy.
ZOSIA: Yeah, it is. And it can be overwhelming. And I think it doesn’t have to be a binary. It’s not like everything’s all interconnected. And so, we have to do these huge macro-level changes, and I don’t know how I can tackle all the issues all at once. I think it can be very easy to get overwhelmed. I think we can hold the interconnectedness and the necessity to have all hands on deck and all perspectives at the table, and we can still have the work that we’re doing. You know, you can have your piece, and it comes out of your passion and what’s immediate in your sort of corner of the universe. You can have both. And I think that that’s a way to cope with the overwhelm is to say, OK, it is all interconnected, and I have to always be aware of that. And then I can also be over here doing my work, and that’s part of the big, huge work. They’re not separate. It doesn’t have to be like a fight.
JILL: Yeah, you’re talking about making sure that the diverse voices are part of the conversation.
ZOSIA: Mmhmm. And I think that’s even more essential now, you know. I mean, it was always essential. So, I’m not saying there was ever a time where it wasn’t essential. But now, if we don’t include all the voices, you know, we’re at a point where we have to make some very important decisions.
JILL: So, would you say you’re feeling hopeful, or maybe a different word, looking into the future?
ZOSIA: I think human beings, we keep ourselves hopeful because it would be hard to function if you weren’t keeping yourself hopeful. There are some really big issues that we have to contend with. Like I just said, that can be very overwhelming. So, I think on a daily basis, yeah, you do try to think of things that you’re grateful for and try to keep moving forward and tackle the things that you can tackle and be a voice at the table as much as you can or in the ways that you can.
CHRIS: Personally, I’m very interested in how the neurodiverse community fits or thinks about fitting into Disability culture. And there’ve been folks that I’ve met in Society for Disability Studies and some other academic areas in which, there’ve been folks that have argued that neurodiverse, that community is a little separate or is kept apart from the majority of Disabled community. Is that a topic that is still being talked about in your groups or in what you’re reading?
ZOSIA: Sure. I mean, it comes up all the time. Frankly, the needs are a little different, so if you have mobility challenges, and so you’re looking at physical and environmental access issues, right? That’s different than somebody who has a different way of thinking and processing and how they’re communicating and interacting with other people. And maybe, like I said, needing some of those more social accommodations, attitudinal accommodations, getting the same opportunities as other people. But what I think gets lost is that when we divide up and we say, well, these people need this and these people need that, and that’s different, or these people have these issues and that’s different because these people over here, they have these issues, what we’re missing is an opportunity to band together. Because ultimately, the things we’re finding for are very similar.
For example, when you think about accommodations, whether you’re talking about physical ramps or sometimes in the neurodiversity community, we talk about neurological ramps, right, what you’re asking society to do is value us. If all people with differences, whether you can see them or not, whether they’re physical or not, you’re asking for changes in society that are really, really vital. And so, we could be putting a lot more energy into that instead of squabbling with each other over who really counts or whatever else we might be squabbling with.
I think the other thing, too, is that in some ways, not completely, but there’s been a lot of progress in terms of destigmatizing physical disabilities. So, we see like, for example, with the Paralympics. We see, Dancing with the Stars, and someone has those new, you know—and again, here’s where we get into language. So, if I say something incorrectly or insensitively, I apologize—but there’s people think it’s like really cool to have the, I think they’re made out of titanium, the legs, and actually, you can run faster. There’s been more visibility, I think, because of the ADA and the access, and everywhere has a ramp or they should. That’s not to say we don’t have work to do. But I think there’s been some progress in that slice of the world. There’s still an incredible amount of stigma and shame around Disabilities that have to do with the brain that you don’t see. We’re coming off a 70-year minimum legacy of just total shame.
Autism was set up as a condition that was caused by abusive parents. You know, for a long time they said, oh, well, you’re autistic because your mother’s cold. They would call mothers of autistic children “refrigerator mothers,” OK? So, that’s very embarrassing right there. I mean, these parents knew they weren’t horrible parents. They loved their kids. Then we felt like autism was such a horrible condition, we didn’t even think that autistic children could ever learn. We just put them in institutions, and that was it. There was no services or trying to get to know who these kids were. Anyway, sometimes I hear still, unfortunately, in the Disability community, “Well, at least my mind works.” I’m gonna speak very pejoratively here. You know, you’ll hear people say, unfortunately, you know, like, “At least I’m not crazy. At least I can talk. At least I’m normal socially.” And we have to unpack that because it’s very problematic to conceptualize a segment of the Disability community that way. Because in essence, we’re repeating the very thing that we don’t want society to do! We just said, “Society, don’t treat me horribly because I’m different.” But then that’s what we just did to all these neurodiverse people and people with other mental conditions and things like that. We kinda have to look at that and sort of break that down, because I think, like I was saying originally, it wastes energy that we could be spending demanding the accommodations and the rights.
And now tying it back to COVID-19, you can see every day in the news feeds and whatnot, concern in the Disability community. I didn’t have a chance to read it yet. It just came up in one of my apps, Haben Girma talking in New Yorker magazine about her concerns. She’s a blind, Deaf self-advocate, and she’s worried that if she were to wind up in the hospital, they may say, “Oh, we’re not gonna give a respirator to you.” Whether it’s condition that makes it hard or impossible for you to walk, or you don’t see or with autism, you have some of these neurological differences, we really need to band together so that society understands our lives are as valid as any other life.
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JILL: Part of this project, Zosia, is to connect people. And what we’ve found through the work that we’ve done is that there is more power when you connect people across lived experiences. There’s a, well, there’s more of a community that we can feel part of. Just like you said with the neurodiverse identity, right, there’s more people who feel part of it. And we’re hoping that that’s how people feel about the Disability community: that there’s so much diversity within it. And that we can continue to make connections within it.
ZOSIA: Well, and in truth, there’s the reality of what you deal with on a daily basis. So, clearly, if you have a functional limitation, I’m not dismissing. You know, it may be difficult for somebody, if you’re trying to do whatever you’re doing. But the reality is, on a sort of philosophical or existential level, it’s out of our challenges that human beings invent and create. So, if you stripped all the diversity out of humanity, what would you be creating? You wouldn’t have to figure anything out. So, I always say Disabled people are on the front lines of creating. We’re always creating new ways to do things, new ways to get around, new ways to have relationships, new ways to speak, new ways to do art. So, we’re the inventors. We’re like the vanguard. So, civilization would really have a big dent without us.
CHRIS: Well put. That feels like a wonderful addition to what Neil Marcus says about Disability not being courage in the face of adversity, but Disability being an art form, being an ingenious way of living. The energy of that statement is matched by what you just said. So, I like that.
ZOSIA: Yeah, and in that sense, that’s why it makes more sense for Disabled people as a whole, whether it’s mental or physical or sensory or neurological. It’s that creative force that we all share, that we bring to society. It’s very important and very valuable to protect that.
CHRIS: Yeah. It’s really good.
ZOSIA: I’m glad I was able to join you. You know, that’s maybe the upside of some of this is we have time for these kind of conversations and projects and whatnot where we might not have had the time a few weeks ago, so.
[chill dubstep electronica music plays through the next few lines]
JILL: Yeah, we are certainly really appreciative of the time that we’ve been able to take and the opportunity we’ve had to meet people that we might not have otherwise crossed paths with, at least in the short-term.
CHRIS: Thanks for spending some time with us. It was, yeah, it was great. Thank you.
ZOSIA: Well, thank you.
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: “Jive Town” by Shaolin Dub. (Source: FreeMusicArchive.org. Licensed under Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License)