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 out]
JILL: I really appreciate you being willing to chat, even if it’s just for a short bit.
PAMELA: Oh! [chuckles] You may be able to hear I’m having some problems in my voice. [cellphone rings] Oh, let me decline that. So, I can use this as an opportunity to work on my voice. [laughs]
JILL: Oh, well, if it’s a good thing for you. I don’t wanna push you beyond your limits. You tell me when you’ve gotten to that point.
PAMELA: OK.
[mellow music break]
Hi, I’m Pamela Quinn. I am a former dancer and choreographer. I did that for 20 years before I was diagnosed with Parkinson’s Disease, which I’ve had for over 20 years as well. I currently teach other people with Parkinson’s movement. That was a way for me to take my past and my present and put them together. One thing that people who have gone through a major life change often have to do is to recreate themselves in some way. This was how I recreated myself, and my work has been incredibly rewarding. I would never have anticipated so much pleasure and soulfulness that I’ve received from the friendships I’ve gained in this community. That was a really unexpected benefit.
I also do choreography with groups of people who, some of them have Parkinson’s disease—I’ll refer to that as PD—and others don’t. That experience has been one of helping people realize their capabilities that they didn’t think they had and opening them up to that reality. When I choreograph, I work them hard like dancers. I treat them with a whip! [delighted chuckle] I tell them I’m not gonna be the nice teacher that I usually am in this process. But they respond. And I’ve had some people who’ve never danced. Most of them have never danced before in their entire life. And I’m putting them on a stage. And disability, it depends on the kind of disability you have, but for a lot of people, they’re shy or self-conscious about how they look, particularly if it’s a disability that you wear, that’s obvious to other people. So, to perform in front of lots of people is a big thing, and turns out a wonderful thing. So, that’s what I do. I teach movement for people with Parkinson’s, and I make art for them and for me. And I also lecture and teach at various Parkinson’s conferences and symposiums around the country and internationally.
All of that has been greatly affected by COVID-19. I am teaching online, but I’m not working in the way that I was before. I had engagements that were all canceled. First of all, no one wanted anybody from New York to come into their community because of how extensive the virus was here. So, they were pushing me out. I had keynote speaker in South Carolina and Philadelphia. Those were both canceled. A Michael J. Fox benefit, which I was choreographing a piece for, was canceled. So, that all affected my income as well as my work life.
And I think that in addition to that, the daily routine of walking, going up and down subway stairs, going to and fro, from place to place, has affected my physical life. And that I didn’t realize how much that contributed to my physical health until I stopped doing it. And I fall into a at-risk category. I’m over 65, I’ve had pneumonia twice, and I have Parkinson’s. So, I have to be careful. And that means that not only do I have to be careful, but anybody who’s living with me has to be careful. That includes my husband and one of my two boys who’s 21. And so, that’s really unfortunate and unfair for him that I’m putting these constraints on him in terms of who he socializes with.
And also, part of my work is community building. It’s social. The advantage of the dance classes that I taught were not only physical. They were definitely social as part of it, both in terms of coming together as a group and going through an experience together and dancing to music, which connects you to a sense of grace and spiritual feeling and making things up together and having fun and touching each other and partnering with one another. And all of a sudden, all that is taken away from us. So, that’s hard both for me and for the community I serve.
There are some people who’ve been able to take a negative and turn it into a positive. There are some artists I know who have thrived during this period and others who have been very productive. I haven’t managed to re-develop a routine for myself. I think a lot of people with disabilities craft their lives. They have a routine that they set up that works for them that gives you structure to your life and support. So, we have to sort of recreate that. I haven’t been very good at that [chuckles] so far.
And then there’s, of course, the whole social impact, the social-political injustice that is part of the experience that the Black population is so adversely affected by this disease. And what that shows us about the unfairness of our healthcare system, our social-economic system, the structural racism. That’s maybe the silver lining to this experience: is that it’s mobilizing this country and people to speak up about that and face it in a more direct way. I think we need a new political party that combines the Green movement with organic farming, with the medical community who are fighting obesity, heart disease, things that come from fast food, the Disability community, Black Lives Matter, you know, sense of inclusion.
And the sense that freedom is not a personal right, that the whole idea of I have a right to not wear a mask, you know, is not responsible. [chuckles] It’s not collectively oriented or concerned. It’s selfish. And I think that there’s a real split in this country between people who recognize your personal responsibility in relation to the collective whole and people who are demanding that they have the right to do what they want to do. So, I think those aspects of COVID-19 are a useful catalyst toward the right way to approach life, and I hope that the momentum that we gain from that will continue. But that’s the only good thing [laughs] that I can think of.
JILL: Which is really hard. It sounds like it’s been really hard for you.
PAMELA: It has been. I’ve been very isolated. And that’s, that’s hard.
[mellow music break]
JILL: As you were talking, there’s a few words that came to mind. One is the power of relationships and the importance of relationships in your work and in your life and your career. Can you talk a little bit about that?
PAMELA: An OT—that stands for occupational therapist—who I know well, Linda Tickle-Degnan, who’s from Tufts University, she whispered in my ear a few years ago, “The social factor is more important than the physical factor for Parkinson’s.” And this is what I was teaching. I looked at her, and I said, “No, it’s not!” And now, I’ve come round to agree with her that, I don’t know if I’ll go so far as to say it’s more important, but I’ll at least say it’s equally important. We’re social animals, and our sense of self is developed in relation to other people.
One thing I’ve done that’s been really fun in teaching my students through Zoom, I started to choreograph a piece for them because of all the little windows that you have. And then I was having some difficulty with it because it was technologically complicated for me to figure out how to work that. I’m of the older generation; I’m not technologically savvy. So, I stopped that. I put that on the shelf, and I thought, I don’t want this to be about me. I want it to be about them. And so, I started a project where each week, someone from my class has to bring something to the group that’s important to them. It can be a poem. It can be a quote. It can be a story. Anything. What people have brought has been fantastic! This is a group of people who’ve known each other for quite a while, and it’s let us find out new things about people.
The last presentation was a guy who makes hats! [chuckles] And his hats were wonderful, imaginative, and masks. And I never knew that about him. And we have another woman who’s an inventor. She has dystonia in her neck, and her head goes back like this. And she made a backpack that has a frame here to keep her head in place. So, just all kinds of things that are about them rather than about me. That’s the part of the class I look forward to the most. [laughs]
JILL: Well, you flip the idea of teacher and learner in connection. Not having been in your class or just getting familiar, it sounds like you really see people. Like you really take the time to be present with people. And this sounds like it’s an opportunity where you’re continuing to do that, but in a in a different way. So, giving opportunity for people to be seen and connect.
PAMELA: Right. I mean, one thing is that with Parkinson’s, the only neuroprotective aspect of life that we have is exercise. All the medicine that we take doesn’t do anything for the progression of the disease. It helps you deal with the symptoms, but the disease marches on. And so, with exercise being the only known preventive, you want to work people as hard as you can or as they can manage. But that becomes very difficult in a class when you have a wide range of ability. How can I work this person to the utmost that they need, and that’s gonna leave out this person? But if I help this person in a wheelchair, this other person isn’t gonna be stimulated. And that’s a classic teacher problem: pitch everything to the middle. But I think that the social factor of the interaction between people who are very disabled and people who aren’t as disabled is as important as each of those people with different abilities getting the workout that they need.
JILL: Right. And that goes to another word that I highlighted, is the idea of interconnectedness. You talked about the collective and our personal responsibility to the collective.
PAMELA: Right.
JILL: And it seems like that’s the way you model that in your classes.
PAMELA: Yeah, unconsciously [laughs] perhaps. But I have an exercise that I love to do that has become the center of my class, which I can’t do on Zoom. And what it is, it’s a call and response. So, I say, “Let’s go!” I rhythmatize it or something, and they say it back to me. And then it’s a process of what do you call it when you think of a word that’s connected to another?
JILL: Association.
PAMELA: Association. Thank you. So, I just improvise it, and they say back to me what I say to them. And so, we have this like Baptist church thing going on! And we get really loud and really crazy and wild. And I take them places, and they go with me. You know, they trust me. But I’ve tried it with people working out on their own, and they’re shouting into a vacuum! [laughs] It doesn’t have the same value. But that’s an example of an exercise that has a collective sensibility to it.
JILL: Yeah. How do you think your practice will change when we do get to be in a physical space with each other?
PAMELA: Well, I’ll be delighted when that happens…. Well, I don’t think we can ever really go back to the innocence we had beforehand. I mean, but how it will be affected by this experience, perhaps it will make me increase the social part even more because I realize the importance of it and value it. Perhaps I will have the students make up more of the material themselves so that they are encouraged to be independent in the way they create their own lives, and that they’re not only given permission to do that, but they’re encouraged to do that, to think on their own. But I think that a big question is how is it affecting my teaching now, you know? And I’m still figuring that out: how to make people have a social experience when they’re basically isolated.
JILL: And the physical experience, because, like you said, being physical is essential when you have Parkinson’s disease.
PAMELA: Yes, absolutely.
JILL: Mmhmm. And how are you doing that for yourself?
PAMELA: Not enough. [chuckles] I mean, I’ve gone out in the park at odd times, and I’ve done my social distancing in my mask and my latex gloves. I would like to play tennis. I’d like to engage in some activities with other people to be physical. I mean, I go out. And there’s a friend that lives nearby who’s also a dancer with PD. And I’ve met her in the park, and we’ve done a ballet bar together. So, that’s one thing I’ve done. I have little inhibition. [laughs] I mean, at this point with my disability, it’s like this is what you have, this is what you get. So, I’m not concerned about dancing around or doing something crazy, unless I’m with someone in my family who I embarrass.
JILL: But how great could you be modeling that for other people, other students who can be at a park at odd times and as far as you need to be from each other and free?
PAMELA: Yeah, yeah. That would be nice. I mean, if we lived closer, maybe I could have a class in the park. Or maybe that’s an idea to aspire to, to see if people could figure out how to come transportation-wise.
JILL: Yeah. Or maybe it starts with one.
PAMELA: Yeah. Yeah.
JILL: Sounds like it’s something that you need.
PAMELA: Yes, absolutely.
JILL: Right? Because you mentioned how you’re feeling isolated, and you light up when you talk about the openness and the freedom of dance for you with your friend.
PAMELA: Yeah. Yeah.
JILL: You do a lot for other people.
PAMELA: Yeah, I do it. It gives me pleasure. There’s a quote from a Chinese proverb. It goes, “Help your brother’s boat across, and yours will reach the shore.” That is—
JILL: Yeah, that’s the support that you give.
PAMELA: Yeah, it’s about the support that I give, but what it gives back to me!
JILL: Yep, yep. That’s really a beautiful proverb to keep in mind in life.
PAMELA: Yeah. Right.
[mellow music break]
JILL: What haven’t you said that you wanna make sure to say?
PAMELA: Well, I want to mention Dance USA, because they’re an organization that has funded a number of dance artists as Fellows who are people who are making social change and are committed to that and linking that up with art. And I’m very grateful for being chosen to be a Fellow to represent them. I’m also very grateful that they see dance not just as a performance mode, but as a way of life, and art can be that way, too. It’s how you think about things, how you approach them. And it’s about culture, social background, it’s about physical enjoyment, it’s about spirituality: that my involvement in dance isn’t just as a choreographer, which is what this grant was mainly for. But it’s as someone who recognizes all of the facets of dance and how they can contribute to people’s lives. And so, I would like to thank the organization for that recognition.
The other thing I want to say is that I think that “disability” is a catch-all word, and I think that how one relates to one’s disability has to do with the nature of the disability you have. Were you born with it? Did you acquire it later on in life? Was it an experience of immediate change where you were paralyzed in a motorcycle accident or something? Or is it a chronic progression of a disease that happens very slowly over time? I think that how you relate to the term and the experience is a product of the very nature of whatever it is that you have.
It’s been very important to me, as a former professional dancer, to maintain my own physical ability. And yet at the same time, I don’t wanna feel shamed about my Parkinson’s. There’s a double edge there that I’m striving to be the best that I am and to even hide my disability at certain times, but I don’t wanna feel I have to apologize for that. And I feel in the politically correct community that there is some feeling that those two things can’t coexist. And I think they can. I think that we all want to be as good as we can be in whatever state we have, and that’s fine. That’s good. It doesn’t mean that we reject the notion of disability. So, I want to articulate those differences because they’ve been something that I’ve had to deal with, that when I was first diagnosed with Parkinson’s, I hid it, and most people I know do hide it. As I’ve become more of the community, I don’t want people to be shamed by the disease, but I also understand your desire to hold on to what you had. And that that’s OK. So, I’d like to address that sort of dichotomy.
JILL: It goes to the heart of acceptance.
PAMELA: Yeah, right. Here’s another thing that I think. When I was a kid, there was a TV program called Queen for a Day, and I don’t even remember what the program was. But I wish we could have people who are Disabled for a day, that non-disabled people could experience what we experience. I have a friend who’s a psychiatrist who told me that the most meaningful part of his education was having to live with a schizophrenic for three days. And actually, there was a program that I was part of with people with Parkinson’s were matched up with people without Parkinson’s, and you had to give them physical limitations that helped them experience the disease. So, for instance, I put a bungee cord around someone’s leg, so he was forced to take small steps. And I had him button up his shirt wearing rubber gloves as a way to deal with what it felt like to have lack of digital dexterity. And so, I tried to simulate for him it felt like to have the physical experience of Parkinson’s.
The problem with it was that, with the project, was that for one day, it was a novel experience for him. But had it last three days or a week, the novelty would’ve worn off, and the frustration of it would’ve set in. I often think that if there was a way for people to live our lives for a small period of time, that improvement and change would happen a lot faster.
JILL: Yeah, you’re talking about empathy and understanding.
PAMELA: Yeah.
JILL: So, some of the questions we have about the trying on a disability is that people would be like, “Ugh! I’m so done! I’m so thankful I’m not Disabled!” And it works against it. But what you’re talking about is building a relationship with the person and the disability for greater understanding.
PAMELA: Yeah, yeah. I think empathy leads to understanding. Understanding leads to giving. Giving leads to research. And research leads to a cure, in terms of diseases that have the potential to be cured. But I also think that disability—I don’t like the term “mixed-ability” because that implies a level field. And I think that people have really different levels of disability, that I used to think that life evened out in the course of, hardship was equally shared. I don’t think that anymore. I think that some people have harder lives than others, and that that needs to be taken into consideration. And that also, the worst kinds of disabilities are often the ones you don’t see, like depression. I think that’s a really hard disability ‘cause it prevents all kinds of activity and social engagement. I think mental disabilities like schizophrenia or ones that impair your ability to relate to other people, those are really the hard disabilities. And so, in that sense, I feel lucky to have the disability that I do. And even with Parkinson’s disease, although people think of it as a motor disorder because tremor and gait or more obvious things with it. That there are other parts of it, that there’s anxiety, there’s depression, there are other facets. The non-motor parts of it are even more disabling than the motor parts of it.
JILL: Well, and that’s part of that understanding and the empathy in the learning that you would come away with, with building relationships between Disabled and non-disabled people or people with different types of disabilities and experiences.
PAMELA: Yeah. I’ll end with a story. When my older son was in high school, he was with a bunch of friends, and they passed a poster of Michael J. Fox. And they all started to move in gyrating way. And he said, “Stop it. That’s not funny. My mom has Parkinson’s.” And all the kids just silence, and no one said anything. And they walked on, and eventually went on to other conversation. But at the age of 13, it would’ve been so easy for him not to say anything. But the fact that he stuck up for me and made them aware [starts to choke up] that this was something that he lived with…. I’m getting emotional just talking about…. I was so proud of him. And that was a moment of empathy that you’re talking about.
JILL: That is a really proud moment because I have heard of stories that go the other way—
PAMELA: Yeah.
JILL: —where kids stay quiet.
PAMELA: Right.
JILL: Well, I appreciate all of your time, Pamela. I appreciate just being present in today in this conversation.
PAMELA: Well, thank you so much for this opportunity to talk to you and thank you.
JILL: All right. Well, take care. [mellow music plays through the next few lines] I hope you get out to the park or whatever it may be that brings you joy.
PAMELA: You’ve given me some new ideas.
JILL: Good! Good. We’ll have to watch and see how they bloom.
PAMELA: All right.
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: “Planet Plura” by D SMILEZ. (Source: FreeMusicArchive.org. Licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License.)