Cherylee Houston — Writers and Performers with Disabilities & EDS

Cherylee Houston sitting in a group meeting at a workshop

Cherylee Houston is a British actress known for her roles as Izzy Armstrong in BBC’s Coronation Street and as Maz, a character in Houston’s BBC Radio 4 comedy series Tinsel Girl. Both characters show the power of authentically cast disabled in the entertainment industry and bring awareness to their audiences, especially young actors with disabilities.

ABILITY Magazine’s Chet Cooper and Karina Sturm spoke with Houston about life before her diagnosis with Ehlers-Danlos syndrome (EDS) as well as her career and drive to teach and support upcoming generations of performers and crew with disabilities.

Chet Cooper: How did you find yourself saying, “I want to go into acting”?

Cherylee Houston: As soon as I grew out of the idea that I wanted a sweet shop–So about age six, I saw the film, “Annie.” It was the energy and the delight. It was exhilarating to see somebody sing and dance. I can’t sing or dance. (laughs) I found it was such an exciting world. It was a world of make-believe, but there’s so much in acting that gives you a lot of joy.

Cooper: You had an entrepreneurial mind back then?

Houston: (laughs) No, I think I liked sweets an awful lot. What I thought was “What better way to spend your day than to be surrounded by sweets?”

Cooper: (laughs) How did you move into a different direction after six?

Houston: Our school didn’t do many school plays, but I was always asking. My teachers must have found me really irritating because I always wrote things, and I would stand up in front of the class and act these out! Which is mortifying if you look back at that now!

Group photo with Houston and woman in wheel chair holding a sign from the TripleC Writers Initiative Programme

Cooper: You stood up in front of the class—you weren’t using a wheelchair then?

Houston: My disability was there, but I didn’t become a wheelchair user until I was 24, and I was still undiagnosed. So, I was in a lot of pain, but I didn’t really understand the world of disability.

Karina Sturm:  In previous issues, we spoke with actress, Jamila Jameel, and Meghan O’Rourke, journalist and author who wrote “The Invisible Kingdom,” which not only talks about her EDS and chronic illness journey but dives deep into gender bias and why women especially get misdiagnosed so often.

Houston: Brilliant because EDS is so much more prevalent than people realize. So many people are undiagnosed and told they have other issues.

Sturm:  When did you first notice symptoms, and when did you get diagnosed?

Houston: There was an enormous gap between EDS starting and being diagnosed. I noticed symptoms at about the age of eleven. I was always known to be accident-prone and clumsy, with my joints constantly dislocating and my ankles rolling over when running. However, the pain really kicked in at that age and just got worse and worse from there. I couldn’t run anymore; I couldn’t stand for long; I couldn’t hold pens; I had to type on a computer at school. By the time I got diagnosed, I was 24, and a year after, I became a wheelchair user.

Sturm: Are you using the wheelchair due to your pain or the dislocations from EDS?

Houston: Whenever I stand up for more than a couple of minutes, I can feel my calf splitting. So yeah, it is because of dislocations and severe pain. I’m a bit like that advert of the man who starts as a crawling ape and then slowly becomes a standing man, just that it is the other way around for me. I am standing, and within a few minutes, I’m crawling. [Laughs.]

Sturm: [Laughs.] I like that you can take your pain in a humorous way. Can you share your challenges along the path of getting a diagnosis?

Houston: In my early teens, I was told I had a growing disability, then arthritis and MS, and then they decided I was making it up. For ten years, they said it was a mental health issue. I got to the point where I stopped speaking about being in pain, even though I was in severe pain. This part was tricky and impacted my identity quite a lot because I’d struggle, but I couldn’t tell people how much I was struggling.

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Sturm: What types of struggles did you face getting into acting?

Houston: Let me go back a little bit. When I was in drama school, I was told as a wheelchair user, I had no right to higher education in the UK. Disabled people officially have not had the right to education until the year 2000. However, my drama school tried their best considering the times. They said that I had no right and they had no legal obligation to educate me anymore, but they would still let me stay.

Glamour shot of Houston with long eyelashes and a pearl necklace

It was at the time because of all those prejudices by the society–which to some part are still there today. I remember at the end of the third year of drama school, everybody got a mentor. I didn’t because they said there were no disabled actors. It took me a while to realize how wrong they were because I was not yet part of the disabled acting community and the disabled creative community.

But early in my career, I’d have jobs taken off me when they realized I was disabled. I was auditioning in car parks because the set was inaccessible. I did my makeup outside in the rain because the green room was upstairs, and they just put a little tent up for me. People were trying to adapt, but they were acting like they were doing something nice for me rather than me being allowed in and seen as an equal. It’s not been the journey you can expect as a non-disabled actor, but it’s taught and educated me a lot. And I’ve been part of a community I would never want to miss. I like being disabled for what it’s taught me. I don’t like the pain side of it, but I would not ever want to lack those experiences. It’s given me a different life and a life that I’ve appreciated. 

Sturm: How did you then finally land your first acting job?

Houston: I was damn determined. I wrote to every single cast and director, every theater in the country, and then I got my first job in a disabled theater company in Liverpool. I continued to write to everybody until I got more jobs. Then I contacted agents. I had twelve TV credits before I got an agent because nobody would take me on. For instance, with Corrie (Coronation Street), we were given an eight-page script and had 36 hours to learn it. So, I lived those 36 hours. I knew that script backwards. You have to just put everything else aside and do it.

Sturm: Do you feel like that is partially due to always having to do better than our non-disabled colleagues because we have to prove ourselves all the time?

Houston: It’s weird, isn’t it? If you put in the same as your non-disabled peers, would they assume less of you? I’ve never dared try it. It’s a lot of pressure we put on ourselves caused by the fact that people assume so little of us all the time. I’ve run so many courses for disabled actors over the years and always told them, “You have to be far better than your non-disabled peers. You have to smash that ball out of the park. You have to be the most prepared person. You have to because they will overlook us otherwise.” If I sat in a line of people doing the same work as me to the same standard, I’m not going to be picked. Maybe that’s what it is: You have to stand out so much more that they can’t ignore you because they’d be doing themselves a disservice by not employing you.

Sturm: In your career today, do the people on your set understand your EDS and what you need in terms of accessibility?

Houston: Oh my gosh, yes! They’re phenomenal. But I’ve been there twelve years, so they just get it. I had a rubbish wheelchair for a bit where the front wheels wouldn’t go over the wires. Every time I would come in, people just lifted it all without saying anything. If I’m having a bad pain day, they’ll get it and distract me or do things in a light-hearted way, or people carry items naturally. But that’s people becoming friends and being around you for a long time. When other disabled actors come and work with us, they say it’s different than anywhere else because I think everybody on my set understands disability more now. We’ve got a new writer on the team who is a wheelchair user. And he was saying he was sitting in the canteen and got to the coffee machine. Somebody went, “Oh, that’s a bit high for you, isn’t it?” Next day, the coffee machine was lowered.

Sturm:  During COVID, you filmed yourself at home for your TV show because of your high risk for complications if you got infected? How did that work out?

Houston: Again, they were phenomenal. When I was isolating, they wanted to replicate how disabled people were at home and unable to go back into the world, even though the world started to open back up again. So, they wrote that in the character. Then they auditioned my partner, who I live with, and he played the next-door neighbor. They sent us instruction videos, a TV camera, and all the sound equipment. My partner and I set it all up. We had a director on Zoom who taught us how to operate the lights and everything. They directed us, and we shot it and then sent them the footage.

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Houston sitting with a skeptical expression, brick wall in background

Sturm: Awesome. That sounds like they really did their best to accommodate you. 

Houston: Yeah, they said, “If you can’t come to the set, we will send it to you. “

Sturm: That’s so good to hear! It sounds like you’ve changed things with your acting as well as in the industry.

Houston: It’s important to me that other people get opportunities to do their work and get their voices out there. I just like helping people, but I think there’s always a real sense of achievement in helping people to thrive. And then you see them throwing the ladder behind. That’s what we as a community definitely need to do because we can elevate together and be much stronger.

Sturm: How did you start working with young disabled actors?

Houston: Straight after drama school–the summer–I went down to London and put on a show with friends. It was a profit-share. About six months, I later did another profit-share, and from then I met a director who was really curious about my disability. We were doing Pinter’s The Dumb Waiter, and she was the first director who went, “OK, you can’t stand up for too long.” –I was still walking then.– “That’s interesting. How do we make that more applicable for you?” So, she made my character on the bed more, things like that.

We hit it off, and for five years we ran a company where we did stuff with disabled young people. We did casting training workshops because we realized that we had so few auditions with disabled actors, you needed to be really good at them. We did week-long training with loads of disabled actors in the theater. We put on several shows in that time.

But that stopped when I got Corrie because I couldn’t do everything. I set up another company, and we worked a lot, so I’m managing both jobs now.

Sturm: That’s such important work you do that truly creates change within the industry.

Houston: You know this anyway, but how our stories are told influences how disabled young people live their lives. They see that they can achieve their full potential. At the moment, the world doesn’t allow them to see that, and I think that’s really important to change.

Sturm: And it likely helps that Izzy Armstrong is one of a few disabled characters on TV that is actually played by a disabled person. Can you tell us why this is important?

Houston: True lived experience makes representation so much better. It tells the story in a much more interesting way. When a non-disabled person plays a disabled person, they play the society’s opinion of that person. So it’s never truthful; it’s never realistic. Non-disabled actors play the disability, not the character. They also play the subtext wrong. I’m joyous in being disabled, so I’m not going to play this down sad subtext for everything I say. Society’s opinion of disability and particularly specific disabilities is so far removed from the truth. That’s where the difference is making significant shifts in having that lived experience. Because you have that lived experience on screen, people start to identify and connect with disabled people more. If you stay with non-disabled people playing disabled characters, they will play the pity, the charity, all the opinions that society has got wrong about us and keep them around.

Sturm: I understand that several episodes of Tinsel Girl are based on your own experience with EDS. How did you manage to produce this?

Houston: In 2006, I wanted to meet with a guy I got to know online. We said we would meet under the big wheel in town. So, I said, “Oh, talking of wheels, I’ve got some myself.” He went, “I cannot do that; my sister is handicapped herself. I couldn’t have that in that part of my life, too.” And I thought I’m going to meet him and make damn sure he fancies me, and then I’m going to dump him. This was in my 20s when I thought whenever someone told me I wasn’t attractive, I would make sure to show them what it feels like.

Cherylee Houston in wheelchair and woman with right arm limb loss standing gesturing to sign stating "DANC - Disabled Artists Networking Community.

Then my friend asked me why I would not write a book about those experiences, which turned into an experiment because I realized I had really low self-esteem. I was fine with my mates, and I was fine with my work, but on the romantic side, I had no value because of my pain. It impacted so much of my personal life.

I was filming a BBC sitcom at the time, and the writer told the executive about my book. He liked the idea and tried to get it into TV, but then it was handed over to radio. I’ve now had seven series of it. We always look at what the big thing is that’s happening in my life and then turn it into like a light-hearted comedy. It is a romantic comedy, but with a lot of EDS stuff thrown in there. 

Cooper: So, now you have two jobs, you said?

Houston: I am part of the TripleC Collective (Creative Confidence Collective). I was one of the founding members. We’re the TripleC, and we run DANC, the Disabled Artists Networking Community. We also run workshops for young people in education using drama, in disabled schools. We do a lot of outreach work, pre-COVID, and we also do attitudes and access training.

Cooper: The attitudes and access training, that’s corporate-based?

Houston: Yeah. We spoke to the arts organizations. Because a lot of disability training is about facts and figures, we do it about approaches and attitudes. You can look at a blueprint of what your organization is trying to achieve and how to then work that through to get more disabled people involved in your company and how to make it accessible for them.

Cooper: Great! You do that in person?

Houston: We do it all over, really. We’ve been doing some for a theater this week, we did some for BFI last week on Zoom. Our main thing at the moment is DANC, where we have four master classes a week, which is skill sharing. It’s been going four years, and pre-COVID we had 450 members. We now have over a thousand disabled artists who regularly engage and participate. It’s about opening up conversations with the industry and the artists, (removing) the blocks to employment and then getting disabled people employed. That’s going extremely well for people. We’ve got so much disabled talent out there. What’s really exciting is they’re starting to get employed more and more.

We’ve been doing stuff with actors for a long time, so we have actors, writers, musicians, dancers, we have all sorts of people. We’ve just started a dance strand. We’ve just started a visual arts strand.

What’s great about it is that we’ve built this reputation and now production companies are coming to us and going like, “We want to start crewing up, getting more disabled cast in.” And we help them facilitate that. We’ve set up a database, a talent-finder database, which means people can register–a bit like a LinkedIn–where you can register, upload your CV, links to your agent, links to whoever, and then whoever in the industry wants to employ disabled creatives, they can find them. Whether they’re looking for a choreographer, a makeup artist, a dancer, a writer. They can just go into there and find it. It stops the disabled feeling like they’re the only one, and it also stops the industry saying that they don’t know where to find them. And that approach has really worked.

As it happens, and you know this anyway, as our stories are told, that influences how are disabled young people live their lives. They see that they can achieve their full potential. At the moment, the world doesn’t allow them to see that, and I think that’s really important to change.

Cooper: We are of the same mindset, we’ve been working toward the same things here in the US through storytelling and more currently abilityEntertainment. I applaud all the work you’re been doing.

Houston: It’s a personal mission that you don’t want the next generation to live through the shit that you’ve had to, you know what I mean. You go, “This is really unjust! This is unfair! There’s so much quality to people that they have to offer that’s not seen.” It’s a labor of love for a lot of years. We’re only finally now just getting a tiny bit of financial independence as a company, but all of us worked a lot of hours for free just to get it off the ground. I think that passion for change is you don’t want to world to stay in this terrible state where people are perceived as different or as less capable.

Cooper: Yes. The biggest challenge is changing the mindset. And that mindset, as you’ve also pointed out, is often from people who are being denied access because they haven’t seen role models. They haven’t seen that there’s an opportunity out there

Houston: That’s exactly it. I’ve worked in schools for 20-odd years now. We’ve done a lot in disabled schools with TripleC. We did a year-long residency in a disabled school. We brought psychologists in to see why it works. So even if you were doing it in drama, somebody’s giving you your choice, your opinion, your time to have that experience. In psychology, once you’ve had that, it doesn’t go away. Nobody can take it off you again. It’s just that the non-disabled world quite often doesn’t allow the disabled child to have those experiences because they over-care.

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Cooper: I know you get a lot out of what you’re doing on a personal level—your advocacy and all the work you do with young actors with disabilities— but there’s also that other personal level of you being an actor. Where are you with that? Where do you want to be?

Houston: I think putting my toes in the water of theater this year is a nice step. Because I’m a chronic pain sufferer, I never look at big pictures because they’re either too overwhelming or too scary in the disability sense, or I have to live in the moment to stay alive with pain. I don’t make future plans much. 

Houston lies in her bed cuddling with her small fluffy dog

Sturm: One last question, would you mind sharing if there is someone who inspired you to be this incredible advocate for the community?

Houston: My mum and my godmother. When she passed away, I found so many petitions about things, and I really learned from her. If you’re not happy about a part of your life, you can do something about it by having conversations with everybody around you in that same community. And you can make a change by pulling people together. And my godmother inspired me creatively, got me outdoors, and made me love the outdoors. Just two powerful women in generations where they weren’t seen as equals. They taught me to never take no for an answer, to stand up, but to do it in a fun way and creatively and just bring everybody together to make a change.

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