Greg Marshall’s Discovery of His ‘Leg’

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LINDSEY WELLS, HOST: From KVMR and in partnership with FREED, this is Disability Rap.  

GREG MARSHALL: Instead of looking someone in the eyes and seeing if I was attracted to him, or if we had chemistry, I was caught up in this internal anxiety attack or drama, where I wasn’t even really able to enjoy myself.   

WELLS: Today, a conversation with Greg Marshall on discovering he had cerebral palsy, thirty years after he was born.  

MARSHALL: I think being disabled, honestly, made me a better lover. It made me a better listener, it made me more giving, and it made me work around what I couldn’t do, and it made me really good at what I could do.  

WELLS: That’s all coming up on Disability Rap. Stay tuned!  

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CARL SIGMOND, HOST: Welcome to Disability Rap. I’m Carl Sigmond and before we introduce our guest today, I want to welcome Lindsey Wells as Disability Rap’s new co-host.  

WELLS: Thank you, Carl. It’s great to be part of the show and part of the team here at FREED.  

SIGMOND: Lindsey, can you introduce today’s guest?  

WELLS: Yes, well today, we’re joined by someone who has had cerebral palsy since he was born, but no one ever told him that he had CP or even that he had a disability. It was not until Greg Marshall was in his early thirties and applying for private health insurance for the first time that he learned, through a review of his childhood medical records, that he actually had cerebral palsy. Up until that point, he just thought he had tight tendons, which was the line his parents used to explain why his feet and legs didn’t work like other kids his age.  

Greg Marshall takes us on a journey of discovery in his new book, 'Leg: The Story of a Limb and the Boy Who Grew From It.' It’s a memoir not only about learning he had CP, but about a mom who fights cancer, a dad who gets diagnosed with ALS, and a sister on the autism spectrum. And it’s a coming out story: coming out as a gay man at the age of 19, and then coming out as disabled in his early thirties. The book is poignant and also incredibly funny and tells this unique story of a kid who grew up in a small town in Utah where the only person who didn’t know he had a disability was himself.  

Well, Greg Marshall, welcome to Disability Rap. It’s great to have you with us. You know, your parents strike me as such open people – your mom documenting her journey with cancer in the pages of the newspaper your dad owned. And yet, they weren’t open with you about your disability.  Can you tell me if it was a relief of some sort at the age of thirty to discover that diagnosis?  

MARSHALL: Oh, that's such a great question. And thank you so much, Carl and Lindsey for having me on. You know, it was in so many ways, an enormous relief to get the diagnosis. Growing up in the family that I did, I was surrounded by disability. My mom was diagnosed with cancer when I was in the second grade and is still alive today, having battled non-Hodgkin’s lymphoma for all of those years, and breast cancer and a variety of other health issues. And of course my dad was diagnosed with ALS during my senior year of college and has passed away in 2008. And I was one of his caregivers.  

And I think their journeys gave me a script to follow, or they really, like with my with my mom in particular, I really saw how she was celebrated and valorized in her community as a disabled person. And I'm not sure that back in my childhood she would have necessarily use the term disabled to describe herself, but her battle with cancer was very public. It was literally, like you said, it was in the pages of the newspaper. And I saw the power that she had in claiming her story and making it her own. Instead of, you know, being the punch line, she was writing the punch line, you know, she was very much the hero of her own story. And it would be the kind of thing where she would have chemo or blood transfusion or a bone marrow biopsy one day, and then the next day be on her computer clacking away at her keyboard, writing about that story for a significant audience. And I think I looked at that both from a writing perspective, and from a survival perspective, and very much wanted that for myself.  

And I think that, you know, the same thing with my dad's ALS, he was very much the hero of his story. He was a marathon runner, and a very active guy, a skier, a swimmer, you know, he, he was literally running marathons, when he was diagnosed with ALS. One thing that angered me when I found out about my diagnosis was that cerebral palsy hadn't been allowed to be part of my journey, I wasn't allowed to be the hero of my own story in that same way. I couldn't incorporate it into my identity, or talk about it, or kind of have bodily communion with people about it. And I felt in a way, like I'd been robbed of that experience. And I love my parents very much. And they had their reasons for doing what they did that, you know, they, or at least my mom wouldn't be the one to ask about what her motivations were.  

But I knew that I wanted to be, if not the hero of my own story, I wanted to fully show up in my own life. I wanted to feel like the world was mine to wander, and that this life was mine to live. And I think that, you know, really claiming CP and just getting to see myself in full, and cerebral palsy as a part of myself, instead of something that I needed to be ashamed of, or run away from, was incredibly empowering. And so even though my parents, in some ways didn't give me the language to grapple fully with being a disabled person, they provided these undeniable models for being disabled. And I think that that's kind of one of the tensions of the book that makes it really interesting: what ailments are valorized and celebrated and what are seen as taboo and stigmatized and kind of put in the closet? 

SIGMOND: Before you discovered you had CP, you just thought you had tight tendons. And so, when you would go on dates, you would not even bring up your limp. And you made a comment that the only person in that situation that you were harming was yourself. Can you explain? 

MARSHALL: Yeah, I think what I mean by that is that when you spend all of your energy denying something that's apparent to the wider world, it kind of makes it your problem. Or it makes it your -instead of just being open about it, I found myself always trying to, you know, never walk in front of people, for example, or not let people see me get in and out of a car, or, you know, not going to the bathroom on a date when I had to go to the bathroom because like, I didn't want them to see me get up from a chair and walk to the bathroom.  

Those are small examples of the control that that secrecy had over me. That instead of, you know, looking someone in the eyes and seeing if I was attracted to him, or if we had chemistry, I was caught up in this internal, you know, anxiety attack or drama, where I wasn't even really able to enjoy myself. And especially, you know, especially sexually not being able to kind of go into the bedroom with an apparent understanding of my body that would make me conversant with a partner, I just always had to wing it. And I think what that led to in terms of harming myself was not just the missed opportunity, or the missed connection of a romance here or there, or a fling her here or there. It made me susceptible to other people not being truthful with me.  

In the book, I talk a little bit about two different boyfriends, who lied to me fairly grievously. The one that comes instantly to mind is my boyfriend, Corey who died of AIDS complications, without telling me that he had AIDS. And he told me that he got tested and he hadn't. And so that's a really, you know, that was a really extreme example, obviously. But I think that because I felt like I was holding back and not being honest with him about my body, and kind of why I had these scars on, you know, the backs of my legs, and you know, why I wasn't that great of a driver, or any number of my CP symptoms. I think, because I wasn't honest about those things, it made me feel like he didn't have to be fully honest with me, if that makes sense. And that he could kind of get away with duplicity, or with half-truths or with fibs, because, well, hey, I was a walking fib, you know. 

 I wasn't being truthful with him, and so I guess, instead of any kind of a positive self-talk that would come with a diagnosis of cerebral palsy, like, hey, you know, my brain works a little bit different, or, you know, I may not be as strong of a walker is some but I can, you know, do these other things remarkably well. Instead of any kind of a positive self-talk, it became saying things like, you're stupid, you're incapable, you know, why would anybody want to date you, you know, maybe you should just take what you can get. And so I think those were the kinds of harms, that negative self-talk that was often going on in my head, that just made me, made it made the world smaller and yet also more dangerous because I didn't feel like I could really trust myself. 

SIGMOND: You do such a great job in the book showing how this external ableism you experienced as a child really eats away at you, year by year, and I want to ask you more about that in a minute. But before I do, I would like to ask you to read from the book. And this is when you are applying to Northwestern University.  

MARSHALL: (Reading) Something else happened to turn me off Northwestern that I didn't mention to John. Back in the fall of senior year, I'd done an alumni interview with a guy in an electric wheelchair. His wife had taken my coat when they answered the door, and I'd walked stiffly to the couch in their cozy living room, unsure whether I should mention my tight tendons. Hoping this guy, an engineer in town, didn't think I was making fun of him with my shambling gait. I hadn't mentioned anything about my leg in my application. Our conversation covered the usual ground, stories I'd written for Horizon, and what I'd learned so far from being student body president. As we talked one of the engineers house slippers fell off. I kept wanting to bend down and help him put it back on. But I just sat there on the couch, hands on my thighs, biting my bottom lip, and thinking about how I was blowing it.  

How many times had a slipper fallen off my partially paralyzed foot? My brother said watching me try to put on a pair of shoes made him feel like he was having a stroke. That slipper brought back the sense of revulsion I'd felt for Carlotta, when I saw other disabled people, openly disabled people. I wanted to limp away as fast as I could. Maybe this was part of my attraction to John, my polar opposite, a Greek god who could spell things right on his first try, aced the ACT, and make the tennis team. And there he was in the parking lot of the Cottonwood Club, feeling up his chest muscles and begging me to follow him eastward. I had dad call USC and back out that night, my destiny was in Chicago with John. 

SIGMOND: Whoa, there is so much there we could unpack. But I actually want you to take us on a little journey, from your early foray into acting, to this interview, and how ableism affected all of that.  

MARSHALL: Well I think that early on performing, you know, I was very much into theater and loved the Wizard of Oz, and was part of this great theater group that was full of disabled people called Up With Kids. And in a way, it was such a celebratory space, because I grew up in a suburb of Salt Lake City, and it was very much skiing and hiking. You know, like that's all that you did all day, every weekend. And so theater was such an outlet for me, where I was the star and where I got to shine. And where my disability you know, walking with a limp didn't matter as much.  

I think where the ableism component kind of came into it was when I realized that in some ways, I was being typecast as a disabled person. But as it happened, my acting teacher asked me to play the Hunchback of Notre Dame. It was right after the Disney film had come out, and so that was kind of the hot new, the hot new Disney movie in maybe like 1996 or so. And I think just on a subconscious level, I so rejected the idea of playing someone with a disability. In retrospect, it actually would have been a perfect fit. And it would have probably been the greatest role of my life. And it could have been a really wonderful opportunity. But it would have taken a degree of ownership, and self-possession that I simply did not have as a 12-year-old, you know?  

I thought, I think if I'd had the language back, then I would have seen it as some sort of micro-aggression or felt very put off, you know, by being identified as disabled. When in fact, in some ways, my teacher had just seen me, you know. She'd kind of seen who I was, she saw my talent, she knew I could sing (ish), I'm actually a terrible singer, but she knew that I could kind of sing and kind of act and would probably have thrived in that star role. And so that's when my acting career, such as it was, really shut down. And I said, in retrospect, subconsciously, if acting will identify me as disabled, or put a spotlight on my body, in ways that I'm uncomfortable with, I simply will not do it.  

And so, that in itself, I think is such a great example, Carl, of what you were saying about externalized ableism becoming internalized. I think that it was internalized ableism that was the voice in my head saying, oh my god, this is terrifying. You know, if you go out there on that stage, you know, as a disabled person, you will be destroyed. And so, I think that you know, as I got older, not reckoning with my disability, the harms just accrued, and things would get more and more intense, you know.   

I think about working as a journalist in my early 20s, and, you know, I'm a good writer, I'm a great interviewer. I loved talking and connecting with people. But, you know, dealing with, like, the layout of a page, for example, was really tricky for me, or even just managing, you know, any kind of a career calendar was really hard for me. So I think that I had all of this learned helplessness, that was also part of internalized and externalized ableism of thinking, you're incapable, thinking you can't possibly do this, so you throw up your hands, and you don't even try. And I think in some ways, releasing the book is a little bit of a full circle moment where I just hope that I, I kind of get to be that performer again, a little bit, you know, in a very different way. And I get to talk to people and I get to show up as my whole self. 

WELLS: Thank you, Greg. You mentioned earlier that you were your dad's caregiver when you were in your twenties. What would you wish you could say to your dad now?  

MARSHALL: I think the thing that just that I was saddest for him was that he didn't get to see how it would all turn out. And I think I would just want him to know that it all turned out okay. You know, it's not that it hasn't been complicated, but his love and his acceptance of me as a gay man, and, you know, really, as a disabled person, has been pivotal in my life. 

WELLS: So, what does the disability rights movement learn from the queer movement? And where can the queer movement learn from the disability rights movement? What can we learn from that community? 

MARSHALL: I guess I can only speak to it in personal terms. I think seeing the progress that the queer movement has made, certainly since like I was in college has been really instructive. RuPaul has this wonderful line, “It's all just one struggle”. And I don't want to oversimplify things. I know that life is complicated, and it's not truly all one struggle. But I think just conceptualizing that intersectionality where, you know, I'm not just gay. I'm not just disabled. I'm like a million other things too. And so as much as we can, I think realizing that it is one you know, one fight for autonomy, for a better world, for certain kinds of freedom. But I'd be so curious, what do you what do you guys think about that? What do you think the queer movement and the disabled, the disability rights movement can kind of learn from each other? 

SIGMOND: Like you said, bodily autonomy and being proud of who we are, proud of how we show up in the world, proud of who we love and who we care for. You are so open in the book about bodies and what bodies do in all ways, in all rooms of the house and beyond. And I was just wondering if being disabled helped you be more open about those body functions.  

MARSHALL: I think being gay and being disabled for me, were similar kind of, in intimacy, in that in both instances, you're kind of forced to have really open and overt conversations about what goes where and what you're into. And, you know, kind of what you want to have happen, how you see this scenario playing out. And I really think that in my childhood, I think being disabled protected me in some ways from being discriminated against more for being gay. And I think being gay, taught me how to be a better disabled person, if that makes sense.  

But just in terms of the bedroom stuff, I think that's so perceptive that you asked that. I think that, I think being disabled honestly, made me a better lover. It made me a better listener, it made me more giving, and it made me work around what I couldn't do. And it made me really good at what I could do. You know? And if, if it weren't for, you know, CP I don't know that I would have had to explore and question and sample and talk about it all as much as I have. Much to my mom's chagrin. But um, so yeah, I think I think being disabled is a lover's secret weapon. You know, because we're used to talking about our bodies, we're used to, you know, showing up for ourselves and for each other.  

Gosh, even being a caregiver probably made me a better lover or more, better at caring for people in intimate situations. You know, the shame and the kind of prudishness kind of goes out the window, like when your dad needs to pee, he needs to pee, you know, and that just needs to happen. You know, whatever your feelings are, as a, you know, 22- or 23-year-old gay man. You know, when he needs the commode, hey, he needs the commode. And I think that there's real beauty in seeing bodies for what they are, rather than, you know, we I mean, and I've done it in this conversation, we're constantly heaping metaphors and concepts onto our bodies. And those are valuable, and those are powerful, but there is also something really strange and uncanny and beautiful about stripping all of that away at times. And I think that, I think that that's hopefully one thing that the book at least suggests. 

WELLS: That was our conversation with Greg Marshall. His new memoir, ‘Leg: The Story of a Limb and the Boy Who Grew From It,’ came out last month. You can listen to an extended version of our interview with Greg on our website, disabilityrap.org. Transcripts of both versions are available on our website as well. 

And that does it for the show. Disability Rap is produced and edited by Carl Sigmond and Courtney Williams. You can go to our website, disabilityrap.org, to listen to past shows, read transcripts, and subscribe to the Disability Rap podcast. You can also subscribe to our podcast by searching Disability Rap on any of the major podcast platforms. We are brought to you by KVMR in partnership with FREED, and we’re distributed by PRX, the Public Radio Exchange. I’m Lindsey Wells with Carl Sigmond for another edition of Disability Rap. 

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