´óÏó´«Ã½

 This is a transcript of Meet The 'Vulnerables': Jamie Hail as first published on 29 May 2020 and presented by Octavia Woodward.OCTAVIA - Hello and welcome to the Ouch podcast. I'm Octavia Woodward, a journalist here at the ´óÏó´«Ã½, and if you heard our last episode, you'll know that - according to the government - I'm "vulnerable!". Journalists, commentators and politicians have all been throwing that phrase around quite freely recently. It's been a weird couple of months for all of us - and even more so for disabled people. Some of us have been asked to sign "Do not resuscitate forms" by our doctors - and we're worried that if we do get coronavirus, we won't get the same level of treatment as others. I've always known I've been expensive to keep going. I have SMA, which means I have very weak muscles - and lungs - and I use an electric wheelchair. And I've always felt there was some kind of pressure to justify that expense. Now it feels a bit like like oh… maybe my life is deemed less valuable than other people's. I wanted to speak to people like me who might bteresting. For me - the idea of using a wheelchair *and* getting up *on stage* is… *very* daunting. I'm a bit of a cone affected by all of this - to find out more about them and what they think about "the V word". This! is "Meet the Vulnerables". This week I'm speaking to Jamie Hale someone whose work and… just whole outlook… I think is really introl freak - and any situation where I might be seen as the just the girl in the wheelchair, is something I'd avoid. But Jamie seems to have bags of confidence to just - be who they are - and not let any of that bother them. They've performed at the Barbican - the famous London arts venue - talking about their experience of being trans and disabled. And they're working on a major new Netflix show to boot. I want to know how that all works. And how you navigate the tricky world of media. Jamie, hello!JAMIE - Hi Octavia, thank you for having me. OCTAVIA - Thank you for being on this podcast, especially in these weird times. So I think my first question is - we both use electric wheelchairs and they're not the most subtle of mobility aids.. And for me the idea of being staired at more than is strictly necessary is slightly terrifying. But forgetting about that aspect, how do you deal with stage fright? Like do you get scared? You're clearly not someone who shies away from it.JAMIE - Um, I used to have terrible stage fright. I think that I partly realised that people are going to stare at me, whatever I do. So I might as well give them something to stare at. And partly the more I performed, even when terrified, the more I became the an experienced performer and the more experienced I was, the more I felt an obligation to support other performers. And part of the obligation for me was pretending not to be terrifiedOCTAVIA - And you did your first solo show called Not Dying.  Can you explain that title a bit more to me?JAMIE - At times while I was writing and preparing Not Dying, I'd been very critically ill very recently and things didn't look great. And then things suddenly improved dramatically after I started a new treatment. So it was very much a title and a show which is about living. Whatever your circumstances are.OCTAVIA - And we've got a clip of it that we're going to play here.CLIP FROM JAMIE'S SHOW - When I started to write this show I was close to dying, and waiting for my numbers to come up. Not knowing how long I had left. Now I'm not dying. Not not dying, so to speak. Which meant I have to rewrite the whole damn show. And the rest of my life.OCTAVIA - So is that what led you to working with Netflix? JAMIE - Tangentially, yes. The show I'm working on, the lead writer found me through my poetry and got in contact with me and that was how I was recruited onto the team, I suppose. OCTAVIA - That's amazing. So you've, you've been very generous and given us a tiny thing about what it's about. Cause obviously it's top secret, it's called chaos with a K. And I've got some notes here that it's "genre-bending series putting a modern twist on Greek and Roman mythology". Which sounds incredible.JAMIE - It's going to be incredible. I can guarantee it. I can't say anymore at the moment. You'll just have to wait for it to come out.OCTAVIA - Fine!MUSICOCTAVIA - So you were obviously hired for your talents not as a disabled writer, but just as a writer who had a mutual interest with that director. But do you find that's a difficult balance to strike between - disabled performer and normal performer. Cause I mean like, I feel like with my work I really want to promote disabled stories, because, I didn't see them growing up, but also I kind of want to show there's more to me than that. And I don't want to be pigeonholed. How do you navigate that? JAMIE - I really empathise with what you're saying. I feel very similarly. I think I am sometimes hired because as a disabled person I will offer a perspective that a non-disabled person won't offer. I want disabled kids to see their adult selves as they grow up. And if that means that I have to commit a lot of my work to being focused on disability, then I'll do it. But it's, it's challenging. Like, I'm never going to be pitching on an even keel with creatives without access needs. It will always be complicated and potentially expensive to accommodate me. So, anything I produce will always be produced by me as a disabled creative. In the creative industries, everyone has their own, I suppose, I hate to say it, but personal brand, OCTAVIA - Yeah completely, I mean it's what we're told to do. I think I've been in so many meetings when they're like - What's your brand? What's your brand?JAMIE - ExactlyOCTAVIA - But mentally, how do you make disability your brand when it's also your life?JAMIE - I think I create a really clear distinction between myself as a creative and my personal life. Jamie Hale is my professional name. It's not what my friends and family know me as. And that kind of allows me to engage in the world as Jamie, but also have a bit of distance when I'm dealing with really upsetting topics.OCTAVIA - I feel like I have a difficulty because when you feel like you're the voice for a minority, it also adds a lot of pressure. Do you feel that? JAMIE - Very much so. I worry that if I step wrongly, I will either upset a sizable proportion of disabled people or we'll do something that sets back the cause so to speak. I'm always very aware that if I'm going to be perceived as speaking for a community, then I have to be accountable to that community. OCTAVIA - I get that. A lot. I mean it's very difficult when you want to have your own personal views but obviously also you realize there isn't that much representation, but coming back to the balance, then, would you say you consciously market yourself as a disabled person? JAMIE - No, but I would say that I am aware that I will always be marketed as a disabled person and that there's not much I can do to avoid that. OCTAVIA - Do you feel the same obligation with trans issues? How do those two identities intersect for you? JAMIE - I don't feel that same obligation with trans issues, partly because there are a number of very accomplished and prominent trans speakers who I have a lot of respect for. And I think partly because for me transition is something that I can choose to disclose or not. Whereas my body will always disclose that I'm disabled for me. MUSICOCTAVIA - Do you mind giving our listeners some backstory to your transition? How has your disability played into that decision? JAMIE - So I'm 28 now and I transitioned first socially and then medically in my mid to late teens. Um, I started testosterone just over nine years ago and had a double mastectomy eight years ago. I'm, I'm a lot more at home in my body for them, but I've reached a point where I can't safely transition any further. The respiratory complications in particular of further operations are just too dangerous. So I've kind of been stuck in a midpoint where my body will always be intermediate, which is something that I've kind of had to come to terms with. OCTAVIA - Did you find it helpful having a form of control of your body?JAMIE - As my impairment worsened quite rapidly, it was really helpful to me - with transition - to make these changes, and that it was my body and I was going to own it. So since then I've had several tattoos and a lot of piercings and it's been a very similar sense of wanting to claim ownership over over my body and my skin. And with transition, I have come to a position where I don't see myself as male and where it's important to me to be open about my backstory and my experiences and how they contributed to my identity.OCTAVIA - So in terms of your disability, I know you've made the decision not to talk about the specifics of your condition. Can you explain why you don't like disclosing your diagnosis? JAMIE - I'm really concerned not to be pigeonholed as the artist with this condition when I'm so much more than that. So it's really freeing for me to say, actually I'm not going to, I'm not going to adopt medical model terminology to describe my experiences. I'm just going to talk about things as they're necessary.MUSICOCTAVIA - So, what're you working on now, in lockdown? JAMIE - So my lockdown project has been my first play.OCTAVIA - And what's it about?JAMIE - It's about three generations of the same family - the son, his father and his grandfather - and it's about how their relationships build and fall apart under the stress of the epidemic. So at the moment it's written as a play, but it's also designed to be recorded by three pairs of actors, each of whom live together - and then over Zoom.OCTAVIA - So you could film it in quarantine.JAMIE - That's the idea.OCTAVIA - That's genius.JAMIE - Actors often if with other actors, and then housemates can be trained to do a bit of the camera work. MUSICOCTAVIA - So coming onto Covid, which is the giant - I would say - elephant in the room. In this entire situation. So how are you coping at the moment? JAMIE - I've been outside once since mid-March and that was to go to a hospital appointment. So I've tried to forget that the outside world exists and I've given myself lots of work to do so that I can't get bogged down too much in misery. I also find it   really beneficial to think about the things I can influence. So even if I can't end the epidemic and go outside, I can go and look at the herb garden that I planted on my windowsill.OCTAVIA - And how do you think the government response has been for disability and Covid?JAMIE - I think it's been a bit of a disaster to be completely honest.OCTAVIA - I think what inspired this podcast for me was there has always been that slight sense that life, that the disabled life could be like expendable. How have your family and friends coped with that? JAMIE - I think my wife has really struggled because she is also barely going out. She's going out with the dog once a day in order to protect me. But otherwise I think I've actually seen more of my friends than I would otherwise have done just because in the past socializing was often either in an inaccessible venue or so far from me is to be inaccessible. Whereas now it's all happening on zoom. OCTAVIA - It actually has been. I have thought - oh, if people were like this when I've been in hospital for a long time, it might have been a bit better. It is weird how everything's become accessible.OCTAVIA - So what's the first thing you're going to do once lockdown is lifted. JAMIE - Feel the sun on my face. I can do that kind of through the windows, but it's just not the same. OCTAVIA - You've been listening to Meet The Vulnerables from ´óÏó´«Ã½ Ouch, if there's someone you think we should speak to for this series, please get in touch. We're @bbcouch on Twitter, find us on Facebook at ´óÏó´«Ã½ Ouch or you can email us on ouch@bbc.co.uk