Podcast

Interview Date | May 7, 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 fades into mellow lounge music break]

MARGARET: My dearest friends, I wish we all had the communicator masks, very hard to find, with a plastic window over the mouth area. It would be fantastic because, given that we’re all in masks now and I cannot read your/his/their/her lips anymore, my comprehension of what you’re saying falls off the cliff. I love my cochlear implant and my hearing aid. But if I can’t also see your mouth, I’m deaf. My hearing loss is progressive, so it’s giving me a foreshadowing. Time to start now to learn ASL! And my disability community, how ironic is it that COVID has forced accommodations that were previously just impossible? So much for respect for the ADA. Now is the time for our voices to be heard. Despite all, love and happiness, Margaret.

I’m Margaret Chase. I’m a multidisciplinary artist, primarily a performer and writer. As I said, I have bilateral hearing loss. I was diagnosed with it in my 20s. And being that I’m now 65, that’s a long time ago. But it really wasn’t until about 16, 17 years ago that I started to identify with my own disability and started to advocate on my own behalf and started to become really passionate about the challenges faced by people whose communication abilities are compromised. I love communicating with people. I do performance art and spoken word. I’m working on my fourth play right now, which I’m pretty excited about. And I’m part of the artist cohort for the Socially Distant Artist Residency created by Patricia Kalidonis. And I’m thrilled about that. It gives us a way to connect and yet also be genuine with our own personal experiences, our rhythms, our timing as they evolve in this pandemic environment.

JILL: I would just love to start with you could tell us more about the play you’re working on.

MARGARET: Yeah, I’m at work on a play. The title is The Resurrection of Lady Dada: Three Voices For Now. I have long been interested in the Dada movement that originated in Europe in the teens, 19-teens. Many of the artists who were involved were reacting to and responding to the horrors of World War I and also were repulsed by and rebelling against the bourgeois norms of what constituted art, acceptable art. And it was a very combustible international movement that kinda popped up here and there. I have performed Dada material, and I kind of consider the Dadaists to be the progenitors of rap, of performance art, of all kinds of cool stuff. But I became really interested in the fact that the women of Dada, while equally brilliant, were less well-known. And so, for years now, I have delved a little more deeply into the women of Dada. And I selected three of them, to focus on seminal moments in their lives as artists that changed them. So, that’s what the play is. It’s kind of a triad of women.

Now, for the Socially Distant Artist Residency that I’m doing, I decided I would focus on the experience of one of those artists, whose name was Emmy Hennings. She was a brilliant chanteuse, singer, performer, puppeteer, dancer, etc. But she also had tremendous challenges in her life. One of the things that happened to her was that she was imprisoned for the better part of two months for providing, I guess you’d call them draft evaders with documentation, with false passports, with false papers. They were never able to make the charges stick, but she was imprisoned, nonetheless. And that was an event that affected her very profoundly. So, as I was thinking about her, it got me thinking about isolation and the broader issue of isolation, the broader issue of imprisonment, and the different ways that that can manifest. And I thought, let me use part of my residency to research deeply into her experience, as deeply as I can, because most of her writings are only available in German. But let me do that.

And while I’m investigating my own experience of isolation, let me see what the parallels are. Let me bridge across the decades to this incredible woman. Let me think about what she heard when she was imprisoned. Let me think about what it is I hear, because I feel like I’m in a very dystopian soundscape. I live very close to where the ambulances go and the police cars. And since the pandemic has started, it’s almost been like you can measure the hospital activity by the frequency and severity and volume of ambulances and emergency vehicles. So, a quiet night is also very eerie, because I kind of realize your nervous system has become acclimated to hearing sirens all the time.

CHRIS: There’s some things to talk about there in terms of prison. I like that metaphor. I think that’s one that a lot of us are getting acclimated with in the last couple months. I would like to talk a little bit more about, before we move on, the influence of Dadaism. I think that there’s something about the absurdity of Dada that has always intrigued me as well and has seen the connection between disablement or impairment or disabled identity as to the world, at least in the normative sense, an absurdity, right?

MARGARET: Hmm.

CHRIS: And so, that you have this interplay between people’s expectations of what reality is, and then expectations are blown away by disability of any kind. So, it’s not surprising at all to hear that the Dadaists are important to you. How much does play and absurdity and abstractness play in your work or has it played in your work?

MARGARET: That’s such a cool question. Thank you. The Dadaists, the body of work they have left behind, which is exceedingly rich—its poetry, its choreography, its 3D objects, encompassing puppets and sculpture and textile work and performance scores and things like that—I think what their intention was, was not necessarily to be abstract, but to, as you said, Chris, fracture people’s perceptions of reality. If the prevailing norm was a bourgeois ideal of what beauty is, for example, which is a core question for us in the disability community—what is beauty? What are the standards of beauty—their determination was to rip that apart, essentially, create something entirely new that did not have linear connections, but that forced people to look from entirely fresh perspectives at language, at behavior, at body movement. It’s not for nothing [chuckles] that the Dadaists were occasionally pelted with rotten vegetables, that audiences were extremely shocked at the language, at the anger.

So, sometimes people think of Dada as, oh, yeah! They were kinda goofy, crazy, kinda like the forerunners of surrealism. They did not start out to be funny. Humor was not an intentional part of what they were doing, although much of what they did was funny in a very uncomfortable way. And frankly, much the same way that when the disability community contributes its perspectives to what we consider powerful, beautiful, what we consider in the realm of possibility, what we consider to be really facets of being human that, let’s say, the mainstream might look at and find profoundly uncomfortable and yet thought provoking. And so, part of the beauty of the, geez, dare I say it, the beauty of this time, this very challenging environment, is that everybody is having to face their notions of what is it to live in this body? What is it to relate to other people when our bodies are in proximity? How do I behave? What are my choices in terms of how I treat others, where I expect others to treat me, and so forth?

So, my own work is, I like to take risks in my artistic work very much. About a year ago in the summer, I did a collaboration with a dear friend, Nancy Quinn, and I was given the opportunity to perform outdoors on top of an industrial container. And I was like, oh, yeah! [laughs] Who could possibly pass up an opportunity like that? And people weren’t expecting it at all. And I just sort of appeared up there. And so, yeah, I like to take risks. I like to push people. I like to push people to think about, [sighs] geez, before COVID, I thought of it as pushing people to think about dystopian environments or unexpected occurrences. But now everything is kind of up for grabs!

[mellow lounge music break]

JILL: We were just in a conversation earlier today with people about talking about the disruptive nature of art. And that seems to be what you are drawn to, and it drives you.

MARGARET: I enjoy disruption because it’s kind of a fantasy to think that life is anything other than disruption. That’s what it is. It’s constant change, you know. It’s constant change. And yet you wanna give people space for their own reactions as well. So, yeah, I did political street theater when I was a teenager, but I’m not really about propaganda right now. More like productive provocation. I just made that up, and I like a lot. [chuckles] But my own disability, my own hearing challenges, my own communication challenges, I’ve begun to integrate them into my work very frontally, and that’s new for me. And I’m really having a blast with it.

CHRIS: How did you come to that choice? I mean, I think for a lot of disabled artists, you’ll hear that, that moment in which they said, “All right, this is me. I have to embrace it.” And their art takes off from that moment. What was it like for you to make that change to say, “All right, I’m gonna take what many see as a loss, and I’m gonna put it right in the center of what I do?” How did you come to make that decision?

MARGARET: I think as I lost more and more of my hearing, I had no problem with advocating for myself, but I did it on more of a kind of a one-on-one basis. Everybody who knew me, everybody who worked with me knows that I’m hard of hearing. But then, specifically, a few years ago, I started really embracing it because I saw a world of new possibilities in sharing it. First of all, in sharing it, that frees other people to deal with their disabilities, whatever they feel their disabilities are. It’s like, yeah! You know, this is someone who’s unafraid or seems unafraid to explore these possibilities, and that frees me. Also, I’ve had a lot of very absurdist moments in not hearing well that really crack me up, that really make me laugh a lot. And I thought, well, you know, if it makes me laugh, maybe it’ll make some other people laugh, too.

So, I happen to be part of a larger artist community, a loose, you know, lot of artists around where I live of different generations, different backgrounds, very supportive of each other. So, when I was doing spoken word in particular, I thought, I’m gonna start speaking really specifically about my hearing loss. And I did a piece called Battle of the Batteries because I’m never without batteries and thinking about them and which one’s gonna run out. And I hear sounds in my head and all that stuff. And I’m just moving more frontally into that. And also working with Milenka Berengolc, my friend and curator who has disabilities herself, when we put together the Artists Undeterred project two years ago, that was a year-long initiative, and we engaged more than 75 disabled artists from all over the country and from several other countries as well. And that was madly liberating and fabulous because everybody had such ownership of how their disability was intertwined with their work. So, it just felt like a huge woosh of energy under that.

CHRIS: And that’s where we met you, ’cause you had shown some work that we had done called Elevate, which is about our fashion show than we did in a site-specific installation. I would love for folks to hear a little bit more about how that event went. It was it the Staten Island Center, right?

MARGARET: We actually had two exhibitions, and Elevate was shown at both of these. The first exhibition was called Artists Undeterred: Boldly Exploring Disability, and it was held at the Staten Island Pride Center. The opening was very, very high energy. We had a performance by the Open Door Poets who are four men. It’s a kind of a loosely-shifting coalition. But these spoken word poets are, they’re from the Coler Center for Rehabilitation. They are all in wheelchairs with spinal cord injuries, and they’ve taken a lot of their life experiences and poured them into incredibly dynamic spoken word performances. So, we had them there. And we had a number of the artists who we were featuring there as well. We had Anthony Tusler’s photography was shown at that exhibition, his Humpty Dumpty series. [giggles] Sorry, it just makes me laugh thinking of it. And we had a small media section where we had a video by Ryan Haddad, who is part of both the disability and LGBTQ communities and senses a real cognitive disconnect. So, he talks about that. And then we had the video of Elevate which was so thrilling and exciting for people to see. Talk about beautiful. Talk about notions of power and beauty and caring and dynamism and excitement. Elevate captured all of that. So, we showed it at that first exhibition.

Some months later, we had a major multimedia, more than twice as big exhibition called Reconfigurations: Art Disability Identity. And there, we reached out even more widely into the disability community, including artists who are very well-established internationally. And we had a whole media wall, and Elevate was part of a menu of possibilities that people could select from hearing work: everything from music and rap to the Elevate fashion show to dance and choreography, again, all featuring disabled artists. And that media wall was mobbed all the time. There were between 300 and 400 people who saw that exhibition. The opening was extremely exciting because the Latsky Dance Company, which is an integrated dance company comprised of both non-disabled dancers and disabled dancers, performed a variant of their program called On Display, in which dancers were placed throughout the galleries and in the approach to the galleries. The dancers are very beautiful. They’re very ethereal. They’re very present and physical. They’re very embodied in whatever their body happens to represent.

So, people who came to the exhibition were very clearly informed that we were looking to shatter tired narratives of what disability is: either the heroic or the freaky or the pitiful, the pathetic, the magnificent. No! It’s variations of the human experience. Being disabled is a variation of the human experience. It’s equally beautiful, you know, differently equally. It has its own world. And I feel in many regards, we succeeded. And Elevate was a really important, very important piece of that. So, thank you again. 

JILL: Well, thank you. We appreciated the invitation and the inclusion.

[mellow lounge music break]

JILL: I’m interested in what you just said about shattering tired narratives of what disability is and what the narratives that you’re hearing, talking about, listening to currently, during the COVID-19 pandemic are, and what’s going well, and what work still needs to be done.

MARGARET: Right. I think your question can be broadly understood in both the personal context and the larger context. For myself, it was utterly galvanizing when I realized that I couldn’t understand anybody anymore, [chuckles] and I couldn’t make myself understood either. And I have subsequently learned through educating myself and through taking an incredible webinar offered by the Center for Hearing and Communication, that when people are masked, you miss up to 12, 13 decibels of sound. When you already have a hearing deficit, 12 decibels is a lot! And so, I had been flirting with this idea of ASL for a couple of years. I thought, yeah, it’s really a fabulous modality. I should look into it. [claps once] Wow! I have been studying it every single day. My daughter’s been working on it with me. I’m about 90% of the ASL alphabet memorized now because I just said to myself, I have to have as many ways of communicating and advocating for myself as I possibly can. So, that’s the personal piece that really kicked it into gear.

Narratives about disabled people are astonishingly persistent, despite the incredible variety of the community of disabled people. I do think that in the pandemic, there’s a clash. There’s a clash. I mean, I think that people are having to deal with the realities and the diversity of the disabled community more frankly, perhaps, than they have before. And yet there also is a persistent clinging to some of these narratives. You know, oh, how brave of So-and-So. Or isn’t that pathetic? We all know what those things are. I’m very deeply concerned, very deeply concerned about people with disabilities being able to access the care they need in the face of rationing policies, medical ethics that make determinations about the value of human life, and so and so. The good thing is that all those things are being discussed in the media. They are being discussed. There are some extremely piercing articles about the obstacles being faced by people with disabilities in this environment. And in a sense, our community can utilize that to make our needs heard and discussed.

There’s an explosion of resources online now for people with disabilities in case you go to the hospital. There are all kinds of wonderful resources out there. But when it comes right down to the individual situation, I think there’s still enormous disparity, and it’s frightening. So, I think it’s a time of opportunity. At the same time, it’s a time of opportunity to converse about things that are really hard to talk about and have been hidden previously, right? The level of discrimination against people with disabilities, there’s a way that the culture can kind of gloss over that. Not so much now. Not quite so much now.

CHRIS: I agree. I think that’s really well put.

JILL: Yeah. I actually wanted to tie it in about your engagement in issues of civil rights, women’s rights, and disability rights, and how they’re interconnected, how they’re being revealed at this time in addition, not just for people who are disabled, but other identity groups, minority identities that people take ownership of.

MARGARET: I think it’s a very complex and rich environment right now and has been really for some time. Everything cannot be tied to one single administration or one single period of time. There are lots of recurring traumatic and difficult issues in our country’s history having to do with gender violence, having to do with discrimination against all kinds of groups, having to do with persistent violent bigotry and discrimination and lack of opportunity for Black people, for Latinos, for women, for many, many different groups. The persistence of these fears that manifest themselves so violently in projections onto people is discouraging. But at the same time, I think in recent years, we have been propelled into conversations with each other at a deeper level than we might have been otherwise.

The other day, I was thinking a lot about women’s rights and sort of the length of time that I’ve been involved with it, probably since I was born, since I was born a woman. But I mean, since high school. And I have two daughters, and I started teaching them really young that they were gonna have to fight, you know. They would have to struggle and not get tired of struggling if they wanted to receive equal treatment, at the same time, accord that treatment to others, right? So, there’s something in the DNA, I think, that happens in people, a preparation for struggle. And for instance, if you look at the anti-immigrant sentiment that’s been whipped up in our country, it’s ridiculous! An enormous percentage of our population, you scratch the surface, it’s one generation ago. It’s two generations. We’re all from immigrants. We’re all from immigrants. So, the fight is always there, and the opportunities for conversation are always there.

For me, I would rather engage in genuine conversation and run the risk of being politically incorrect however that’s defined than to avoid the conversation! I would rather see us having conversations that are uncomfortable where I need to be educated about something than avoid it because I might say it the wrong way or whatever. And I think that applies to people with disabilities right now too. [sighs] You have to suck it up and be unafraid to be really clear about our needs and that we deserve the same respect as everyone else.

This is also a time when we’re seeing alliances, too. I mean, there are a lot of people of good will and good intention in this country who are in varying states of shock. Not only that over the pandemic, but over many, many issues that we see manifesting in federal policy and in state-level policy and in local policy. And I think that there is an energy underneath that where we’re realizing what our values are and that we are much stronger in community. Even if it’s a diverse and challenging community, we’re much stronger that way than we are siloing ourselves.

CHRIS: You know, one of the things that you brought up early on is just a phrase that you used that I’m hearing resonating in a lot of what you’re saying. And that is that although COVID-19 and this pandemic has just been really awful, that it also has done some work for us as a culture. And it’s done some, as we like to talk about it, again, sort of a disruptive work, right? Do you think that’s hard to communicate to other people? The fact that this thing, which on the surface is so terrible, how do you communicate the fact that it is bringing us to new moments of clarity and to new moments of, like you say, new moments where we can see discrimination more clearly, where we can learn about each other more deeply. It’s hard to get people to think that way, isn’t it?

MARGARET: I do think it’s challenging. And I think that what we’re talking about here is almost, in some ways, the atmosphere in which we live now is like having the effect of pouring an accelerant on fire. You know, everybody’s needs, their individual needs, their collective needs, their families’ needs and the difference between needs and wants are coming into much sharper clarity because people are having to think about these issues. 

As to discussing COVID as a possible springboard for productive communication and so forth, I think that those are interchanges that have to be approached with care. People are in very, very different places with regard to their ability, willingness, and openness—ready, willing, and able—to undertake those conversations. I think that there are opportunities that we should not let go by. And I think that the COVID environment is one that causes us to look inside ourselves. What are my own communication inclinations? If I find myself getting mad about something, I find myself judging somebody for a behavior, I find myself wanting to say something, it’s causing me to stop a little bit longer than I might otherwise and examine where that’s coming from and examine what the results of it might be. Now, at the same time, in this turbulent landscape where there is some receptivity that might not have been there otherwise, I think the disability community needs to take full, full advantage of that.

[mellow lounge music break]

JILL: And the work and the project with Patricia, the Socially Distant Artist Residency, I haven’t looked through all the artists, so I’d be curious, is that project allowing a greater voice to come out, a unity that will last to address these issues and make sure that they don’t go away?

MARGARET: That’s a great question. I’m not really sure I can answer it. I’m one of 30 artists on the roster of that project. And for all I know, Patricia may add, you know, she may add artists as she goes. She’s pretty superhuman in terms of wrangling this initiative! I myself haven’t even fully visited the websites of all the other artists, and the range of disciplines represented is really amazing, really amazing. Built into this project is the ability to communicate with each other through online Zoom sessions where different challenges and issues are addressed. And it’s almost in some ways kind of a tandem path. You’re dealing with yourself amid COVID, and you’re dealing with these large issues of loneliness and alliance, isolation or not, or how you don’t isolate. But then you’re also dealing part and parcel, but a kind of a tandem path, with your artistic practice. How do you feed your artistic practice in these challenging times?

You know, I can only speak for myself as someone who does a lot of collaborating in real time. I’m usually working with one, two, three other people on multiple projects. And I am not like super-duper tech savvy, so I didn’t dive into the deep end and go, oh my god! I’m gonna do this webinar and the seminar and this thing! No, it doesn’t take the place for me of the electricity of in-person interaction. I think that within the Socially Distant Artist Residency, Patricia has set it up so that we have fantastic resources. We have a library. We have readings. We have prompts. We have all kinds of stuff. What she will do with that as an entity to bring it into some other format, I’m not sure.

But I would like to mention to you that, you know, I live in New York City. There are roughly a million New Yorkers who have disabilities. And I have just learned that the Mayor’s Office for People with disabilities in conjunction with Art Beyond Sight and some other organizations is at work right now putting together a huge disability festival, an online livestream festival that’s gonna happen July 26th, available nationally and beyond. It has a working title of, I think, Disability Unity or something like that. But it’s gonna be multiple livestreams. That, to me, is another platform, which, if it comes together—and it should—could be a marvelous moment for us to share, as people with disabilities, all our riches, our gifts with the larger community.

CHRIS: We’re working on an arts festival here in Grand Rapids as well. And so, thinking about how to do a virtual festival. This is not a disability-centered festival. But as more communities move to online events and online gatherings, right, we’re creating a whole new sense of knowing each other. And I find that so compelling, especially in the context of disability. So, here’s an opportunity for disabled artists, the one that you’re mentioning in July, here’s an opportunity for disabled artists not only to invite people to see their work and to experience their work, but because they’re doing that from, presumably they’re doing that from home, that’s also an invitation into the world of disability in a very new way, right? I mean, these cameras will be on in people’s homes and museums and stuff, right?

MARGARET: I do not have personal knowledge of how they’re gonna manage the venue part of it. I think, Chris, it’s probably gonna be both, a real blend. And the notion of it is very exciting, you know, the ambitious scope and scale of it. But at the same time, it’s magnificent and it makes me excited, I admit it also worries me a little bit in the following way. I think that there are a lot of people who don’t necessarily subscribe to the whole online world now.

CHRIS: Mmhmm.

MARGARET: It’s like, oh! My reality has been disrupted, and I can no longer do fill in the blank. That’s cool. I’ll just turn on the computer, and I’ll be able to duh duh duh duh duh. I think there are a lot of people either for whom accessibility issues, temperament issues, timing, etc., that will be a rich and marvelous and irreplaceable resource, but it’s never going to take the place of what we’ve had previously.

CHRIS: Mmhmm.

MARGARET: And I worry about people who— Well, I don’t mean that in a patronizing way. You know, this pandemic, in addition to whatever disabilities a person has, brings about a lot of mental and emotional stress. And so, there are people who tend to isolate in those kinds of pressures. And the notion of community and how we foster that is not only gonna be online, which is marvelous, but it’s also gonna be like the smaller interactions that we have with people. So, I hope we can do both. I hope we can all create using both forums.

JILL: I’m hopeful that hybrid that you’re talking about is that because we’re in this unknown of when we will be together, and when we are together, how many people can be in the same places, it’s forcing more businesses, organizations, and people to think about access from the beginning of the planning in a way that I’m optimistic about, at least in the next year or until there’s a vaccination, that OK, I’m planning for plan A and plan B. But you know what? Plan A can include plan B, right?

MARGARET: I love that. You’re talking about a level of flexibility and responsiveness that has to be fresh and new, right? We’re forced into that.

I just wanna mention that our own local arts council, Staten Island Arts, is in the process, they’re in the second phase, of a really interesting community-wide survey having to do with accessibility and the needs of both artists and audiences with disabilities. You know, how can they better understand what those needs are and what the response can be in terms of making accessibility such an integral part of the planning that it’s from the get-go? So, that’s exciting. And it’s a constant battle, accessibility. It’s one of those never give up, [laughs] never give up things.

[mellow lounge music break]

CHRIS: Are there’s things we haven’t talked about that you wanna talk about?

MARGARET: I think that these conversations, these podcasts are extremely fruitful and useful. It’s almost like taking a trip into someone else’s mind and all of their network of thoughts and connections and recommendations and resources. And we need that. So, I think DisTopia podcast series is just a marvelous resource.

I guess there are just two things that I would like to talk about a little bit. One is that, on kind of a broad level, people with disabilities are justifiably fearful, concerned, angry about what is gonna happen in this environment in terms of access to services. There are many, many subgroups within the disability community that have challenges that are just enormous, like Deafblind people, for example. But I’m not about comparing disabilities here. But what I do wanna say is this. The Center for Public Integrity is welcoming people to contribute their stories of any kind of discrimination against people with disabilities in the COVID environment, any kind of setting. If you have witnessed it, if you know of it, if you’ve experienced it, if you go to the Center for Public Integrity online, they are taking an extremely close look at care rationing policies all over the country. And they want to hear from us. They want to hear from the disability community. So, that’s a kind of a global thing I wanna say.

Then the other thing I want to say is that…[small sigh] stressful times can be a catalyst for creativity and for sharing and all the rest of it. And it can just be a catalyst for pure misery. Let’s face it, OK? So, when we have our miserable days, I don’t think there’s any shame in crying. I don’t think there’s any shame in embracing the people who are close to us, having a conversation, reaching out, saying, “I need help” or “I can’t even articulate why, but I really, today’s is bad.” Or “I know you were afraid you were gonna die when you had COVID, but you didn’t wanna come out and say it,” or these kinds of conversations where we can be present for each other. We all wanna be optimistic, but we’re struggling. And to show some love, it’s never wasted.

CHRIS: Yeah, yeah. Amen to that. There are elements of the disabled community about love and understanding and interdependence and adaptability that I think can feed a lot more than it’s currently feeding. So, I think, yeah, that’s really important. Thanks for that reminder. Yeah.

MARGARET: We all need it. We need it a lot. And it feels great in the disability community to have this incredible sense of openness to one another and not get tripped up by the little divisions and politics and all that stuff. But to recognize that we’re on the planet. [laughs] We’re all on the planet.

JILL: Yeah. You’re very articulate, and your art is driven by and leads people in their thoughts, which is what I appreciate. I like that you don’t give all the answers, but you ask a lot of questions, and you encourage other people to do the same.

MARGARET: Well, thank you. Thank you so much. And I think that questions are part of what makes life rich and yummy and delicious. And I wrote a poem not too long ago called I Can Eat Speech. And it’s about the tactile sense of taking language in as nourishment, and language includes questions. There can never be enough questions, whether we get the answers or not. If you go to SociallyDistantArt.com/Margaret-Chase, it’s my second blog entry.

I Can Eat Speech

I can eat speech

When you sing to me so freely

Your eyes permit me to stare,

Our mouths open

focused, but relaxed

Now I escape the scream of frustration

the jungle-mess of sounds

So often and usually in song

But because you sing clearly

I eat speech with gusto and freely

You don’t care that I stare

Because you love those words

And you feed them to me.

It is nourishment

And a group rite too

And I want the right

Though it’s mostly a beat behind or just never mind

But I am hungry for the singsong and the songsing

And though it may be mush I can still be loud

About wanting it a touch clearer, please, and 

Try again, I’m sorry.

Not sorry. Come on, don’t look at me that way,

I am not stupid. I heard you well

It just didn’t ping like sun-sharpened glass

Ok, alright, go on, I’m skipping over and catching up

I get your context, if you get my drift

I can eat speech.

And still go hungry.

CHRIS: That’s really great. That is really something.

MARGARET: Thank you.

CHRIS: So powerful.

MARGARET: Yeah, it was powerful to write it. Thank you for letting me read it.

CHRIS: Yeah, I love it. Yeah. I love the ending ’cause it’s a continuation, right?

MARGARET: Well, we can help each other with our various hungers and needs in this environment.

CHRIS: Mmhmm. Yeah, absolutely.

JILL: That’s true.

[mellow lounge music plays through the rest of the conversation]

CHRIS: We keep seeing this at the end of every episode, but I’m gonna keep saying it, that someday we will find ourselves in the same space.

MARGARET: I was born and raised in Michigan, folks.

CHRIS: All right. Well, there you go.

CHRIS and JILL: [laugh]

MARGARET: Yeah, I’m from, dare I say it, [whispers] Lansing!

CHRIS and JILL: Oh!!!

CHRIS: Yeah.

JILL: That’s OK.

MARGARET: [laughs]

JILL: It’s only an hour away.

CHRIS: [laughs] Well, thanks for your time, Margaret. This has been really, really awesome.

MARGARET: Thank you so much for having me. I’m honored.

[mellow lounge music slowly fades out]

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: “Farsical – Slow Driver” By Blue Dot Sessions. (Source: FreeMusicArchive.org. Licensed under a Attribution-NonCommercial License.)