In this episode, we talk with Rosemarie Garland-Thomson about the upcoming LOOKING. DIFFERENT. event for NCHPAD and the UAB Center for Engagement in Disability Health and Rehabilitation Sciences (CEDHARS). Rosemarie is the subject of Riva Lehrer’s Portrait of Rosemarie Garland-Thomson, the featured painting at the LOOKING. DIFFERENT. event on May 8. 

We talked with Rosemarie about her personal and professional background, her collaboration with Riva and what it meant to her, and her thoughts on the upcoming event.

A full episode transcript is available below or on Buzzsprout.

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To learn more about the LOOKING. DIFFERENT. event, visit https://www.uab.edu/cedhars/art. 

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Episode Transcript

Quick Navigation (click the linked text below to jump to a new section)

• Intro
• Rosemarie and event information
• Rosemarie’s personal and professional background
• Rosemarie and Riva’s friendship
• Rosemarie’s thoughts on the portrait
• Her thoughts on the LOOKING. DIFFERENT. event
• Conclusion

*Edited for clarity

0:01 Intro

00:03 Host

This is Wellness, Health and Everything Else: A NCHPAD podcast.

Welcome to Wellness, Health and Everything Else: A NCHPAD podcast. NCHPAD is the National Center on Health, Physical Activity and Disability, the nation’s premier center dedicated to promoting the health and wellness of everyone. In each episode, we’re exploring topics at the intersection of health, wellness and mobility limitations. If you have an idea for a topic, would like to learn more about a topic or are interested in our free resources, programs and partnership opportunities, email us at nchpad@uab.edu, give us a call at 866-866-8896 or check out our website at nchpad.org.

Musical Interlude

00:50 Host

In this episode, we talk with Rosemarie Garland-Thomson, the subject of the painting made by Riva Lehrer that will be featured at the upcoming LOOKING. DIFFERENT. event on May 8, hosted by NCHPAD and The UAB Center for Engagement in Disability Health and Rehabilitation Sciences, or CEDHARS. Rosemarie Garland-Thomson is professor emerita of English and bioethics at Emory University. She is also an author, educator, humanities scholar, and thought leader in disability justice and culture. In anticipation for the event, we got Rosemarie’s side of the collaboration with Riva to create the portrait and learn more about her in the process. We start with Rosemarie discussing her personal and professional background.

01:27 Rosemarie

My name is Rosemarie Garland-Thomson, and the most important thing to know about me is that I’m an English teacher, and I’ve always been an English teacher. And the second most important thing to know about me is that I have a significant physical disability. And if you put those two things together, they’ve shaped my work and my life and led me into a relationship, a friendship with Riva Lehrer, and led me into teaching and researching and developing knowledge about disability: what disability is, who people with disabilities are, what kind of meaning the concept of disability has in the world. But it’s important also to understand that all of the things I’ve done professionally as we say, in my work, in my job, have been shaped by the fact that I’m a teacher of literature and art and other things that are designed and made by human beings, and to think and teach about what those things do in the world. In other words, the meaning-making work of language, words, art, objects designed and built things that human beings have done together over thousands of years.

03:10 Host

Here is Rosemarie recounting her first contact with Riva and the years since.

03:14 Rosemarie

In my work life, in my professional life, you go to conferences. You teach, you write, you work with colleagues. So, there is an organization that started up in the 1980s, a professional organization called the Society for Disability Studies, and that was led by a sociologist from Brandeis University named Irving Kenneth Zola (Z, o, l, a). I started going to those meetings in the late 1980s and it was a revelation to me because I was doing work in the English department and I thought that there were no other colleagues, that there was no other work done, in the humanities or in the social sciences about disability. I met Irving Zola, and he invited me to come to this conference (the Society for Disability Studies), and I went, and it was a revelation to me because it was filled with people who had disabilities, who lived with disabilities, but also studied and thought about disability. Who were people like me in the sense that they worked in the academic world, that they were teachers, they were researchers – scholars, we call ourselves. It was an astonishing experience, a revelation to me, and an entering into a community of like-minded people doing the same kind of work (or similar work). And Riva was at those conferences, and I don’t know when Riva showed up, but that’s where we met. So, it’s really important that that was the context of where we were first together. We would have these meetings every year, the way we have professional meetings, and most of the time, I would show up and Riva would show up. I was living probably on the east coast at that time, and Riva was living in Chicago. So, we would not have had a way to be together if it had not been for those Society for Disability Studies conferences and the other work that came from those conferences; other professional meetings, other things that we did together that is the really important knowledge work of higher education. So, we were seldom together in a teaching situation like a, you know like a teacher would have – a teacher like me – but what we were together in were these professional organizations and these community gatherings.

06:10 Host

In our last episode, Riva Lehrer gave her perspective as an artist for the portrait of Rosemarie Garland-Thomson. Here is Rosemarie’s account of the process for the painting, and what it meant to her.

06:21 Rosemarie

It was for me, a wonderful collaboration because Riva and I have been friends, but it was significant for me because I wanted Riva to paint a picture of my hands. Riva’s work in representing people with disabilities, largely leaders in the world of disability, in some way, has been a documentation if you will, that is extremely significant because it’s part of a genre of portraiture that has, you know, has gone on for thousands of years where people of some significance gain more significance because they are represented in this genre of painted portraits.

So, for example, if you go to the National Portrait Gallery in Washington, DC, or the national portrait gallery anywhere, say, the one in London, what you see primarily are portraits of people, and they’re painted always within a certain set of conventions. And those conventions and that portrait itself, and where the portrait ends up being, does a lot of cultural and ethical work by framing people in a certain way, in a certain context, that gives the message to viewers that this person is important enough in the world to have their portrait made, and to have that portrait done in this conventional way, and to have it be somewhere in the world. And so that’s what Riva has done for people with disabilities. And the very set of conventions of a portrait, as opposed to some other aesthetic form, like a movie or even a drawing or something like that, the formality of an oil painted portrait, makes disability and lives lived with disabilities legible to the viewers in some really significant and specific and important way. And so I have, of course, witnessed Riva’s portraits, the ones she’s done over these years. I’ve seen them in a variety of contexts. I’ve seen them in the National Gallery, the National Portrait Gallery in Washington, DC. I’ve seen them in art shows. I’ve seen them in lots of places. I’ve seen them on her website. I’ve seen them in her book.

And I recognized that I thought it was important for her to do, not a portrait of me, but a portrait of my hands that would show the work I’ve done as a bioethicist that would illustrate a really important ethical issue in the development of medical and scientific technologies about disability. So, I thought that putting that conversation into a portrait that would live somewhere and do the work that portraits do would be a really important contribution to the shared work that Riva and I, and many others have done. So that’s why I want to say that it’s not a portrait of me in the traditional sense, which is to say, you know, a picture of my face (or what we call a bust portrait). It’s more of a portrait of my hands, which are the center of interest. And of course, I have unusual hands because I have a congenital genetic birth condition that makes my arms and hands asymmetrical, and, as I like to say, unusual. So, what’s really different about this portrait is that my face is not the center of interest, but rather, my hands are the center of interest. And of course, Riva said, “If I’m going to paint your hands, I want to paint your hands holding a vitrine.” That is to say, a jar that has a fetus in it and that fetus will have a condition like yours. That fetus will be, in some ways, your relative. But it will be a relative of yours that did not come into the world for one reason or another. And of course, Riva and I have both visited and paid attention to the conventions of fetuses in jars.  And so we thought that it would be a very effective message for somebody like me, dressed up in a cool black dress with cool glasses, [and] silver hair, to be holding a jar with a fetus in it, to suggest that one can live a meaningful life with dignity if you have a body like mine and like that fetus. So, this is a very legible portrait. And every portrait is legible if somebody knows how to read it. This portrait, we might say, and I think this is a great little joke, is heavy-handed in its message. I think it’s an important addition to Riva’s corpus of work because of the legibility of my disability, which is quite particular, and that it will live, somehow, in a university setting, medical school, somehow, or rehabilitation medicine department. I’m not sure where it will eventually end up, but I know where it will not end up.

And so, I am extremely moved and pleased that the portrait came into the world. That it is what it is. I’ve never seen it before, but Riva assures me it’s big, and I thought that’s great! And that it looks like me in an unconventional way, because usually resemblance and recognition in a portrait [are] about the face of the subject. But this legibility, this recognition, this resemblance, will be about my hands. I hope it will, I trust that it will, do a great deal of ethical work in the world, in the place that it will be displayed, and in the audience who will have access to it.

13:21 Host

Finally, we asked Rosemarie about her thoughts about the LOOKING. DIFFERENT. event, and how she hopes it will have an impact on authentic representation in the arts community and for audiences everywhere.

13:32 Rosemarie

I’m honored and thrilled about the LOOKING. DIFFERENT. event, because I think that it will provide the kind of context that we want that brings together audiences interested in art and interested, maybe, in what I call the narrative humanities; that would be subjects like philosophy, art, literature [and] film. That’s the area of knowledge-making that I work in. And so I think because this event is about a piece of art, that it will draw audiences that understand what art, in the very broadest sense, does in the world. And that it will also then, because this is basically a medical and scientific context, will bring an audience of people working in that area who bring that perspective to the topic of disability and living with disabilities, and the development of technologies and treatments addressed to disability and people with disabilities. So, taking the portrait and making it the center of an event and surrounding it with me and Riva talking to each other as we will, in nice chairs, on a nice stage, with a nice reception, and making that available to the audience will be exactly the right context to establish the exact kind of audience that we hope to have. And that audience will attend the event, and they’ll see how we’re surrounding the portrait, and they’ll see us, and they’ll see the stage, the whole thing, and that will establish the meaning of the portrait. They will carry that on, back to wherever they are, where they live, what they do, [and] who they talk to, and that’s how these things work. That’s why I’m so delighted that this is occurring to establish narratives, if you will, around the portrait and the work that it will do in the world.

You’ve used the word authentic, and you’ve asked me if I think the event and the portrait will encourage more authentic representations in the arts. And the simple answer to that is yes I do, in the way that I’ve described the work of an aesthetic object, and what possibilities it has for doing ethical and other meaning-making work in the world. But I think that the word authentic is a really interesting one. Those of us who live with disabilities generally feel that, of course, our disabilities are part of who we are. They shape our lives. All of us need good health care, whether we have a disability or not. But oftentimes the health care that is available to us, intends to remove our disabilities, rather than support our lives with disabilities. And that is the important element about authenticity, about what it might mean to live an authentic life as a person with a disability. I would say that an authentic life as a person with a disability, or an authentic representation, is one that suggests that it is possible to live a life with dignity and a life of flourishing with a disability. And that often is in contrast to a generally accepted understanding that disability reduces one’s quality of life; that disability is a burden. And that story about the burden of disability is one that we want to undo with this portrait [and] with all of Riva’s work.

18:02 Host

Thanks for listening to Wellness, Health and Everything Else. We’ll provide a link with show notes, including full transcripts, links and more in the podcast description. To listen to the last episode with Riva Lehrer, visit nchpad.org and find the episode in the resources section, or visit our podcast on any of the major streaming platforms. If you would like to learn more about the LOOKING. DIFFERENT. event, visit the links provided in the episode details. If you have questions about our free resources, programs and partnership opportunities, email us at nchpad@uab.edu, call us at 866-866-8896, or check out our website at nchpad.org.

Closing music