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Bloom Blog

'Spaces': a music video that makes room for disability

By Louise Kinross

Spaces is a new music video with a twist. It was filmed in Los Angeles with singer-songwriter James Ian, and directed by filmmaker Dominick Evans, via an iPad, from his bed at home just outside Detroit. Both artists have spinal muscular atrophy (SMA), as do many of the people in the video. A mother and toddler dance, a girl rides on her mom's wheelchair, and well-known YouTubers Squirmy and Grubs kiss at their wedding. SMA is a rare genetic condition that causes muscles to weaken. The video was sponsored by biotech company Genentech, which launched a new SMA treatment last year. "It's the representation I never got as a kid," Dominick says. 

BLOOM: How did Spaces come to be?

Dominick Evans: Earlier this year I was approached by people that were representing Genentech who said they wanted to make a video for the SMA community. At first, I was very skeptical. It seemed too good to be true. I didn't want to sign anything until I knew it would be done the way I wanted.

First, I needed it to reflect the diversity of the SMA community. As a white disabled person, I recognize that I have a lot of privilege. As a multiply marginalized person—I'm queer, non-binary and trans—I also recognize that we are primarily represented as white, cisgender heterosexual males. So it was really important that diversity be a part of it. The second thing was this can't be inspiration porn. They said 'We want this to be legitimate art,' so I said well, sign me up. 

BLOOM: What did you hope to convey in the video?

Dominick Evans: First and foremost it's art. It's a music video. A group of us with SMA got together in June to talk about it. We wanted it to be like any other music video. I want people to go on YouTube and say 'Oh hey, there's another music video I should check out.' We are artists. I'm a director. James is a musician. A lot of the people in the video are doing professional stuff, like social media influencers Shane Burcaw and Hannah Aylward. 

The other thing was we wanted people to see us as human because a lot of us are not always treated that way. We wanted to humanize the disabled experience. We wanted it to be something anyone could relate to, whether they're disabled or not. We all deserve to create spaces and be in spaces and we're all just living our lives. I hope that disabled people might say 'Hey, I've never really seen myself represented, but here is someone that I feel connected to.'

There's a really important moment in the video for me. It's when one of the little girls, Celine, is walking.

I walked until I was 16, and when I was growing up I was tormented in school because of how I walked. There's a distinct SMA walk. It hit me like a ton of bricks when I saw Celine walking. That's the walk everyone made fun of me for, and look at her. She's so confident and doesn't have a care in the world as she walks that way. It's the representation I never got as a kid. Imagine how powerful that will be for disabled kids who have never seen themselves in media. I'm 40 years old and I never got that. I want disabled kids to say 'Hey, I see myself in one of these people in this video, and maybe I can be a singer or a director, or whatever my disability is, that doesn't necessarily have to prevent me from doing what I dream of.'

BLOOM: One of the lyrics in the song is 'I'm not invisible, I'm an original.' Does that speak to the experience that many people with SMA have of not being seen?

Dominick Evans: We're not welcomed into spaces and that's exactly what we were trying to speak to. We aren't invisible but we really feel like we are. How many of these spaces do people not even consider disabled people to be a part of? We were blessed to include some footage of Shane and Hannah's actual wedding. People don't think disabled people get married. There are two mothers in the video that both have SMA. People don't think disabled people have children. 

BLOOM: What was most challenging about directing the film from your home?

Dominick Evans: Not being able to be there with the crew. Not because I didn't feel like I was involved, because they made me feel very involved. The on-set director's mission was to make my vision. It was emotionally not being with my crew. 

BLOOM: So there weren't practical challenges, it was the emotional disconnect of not being there physically?

Dominick Evans: Yes. From a practical standpoint, it wasn't that challenging. I'd love to make a TV show this way. I'm working on multiple pilot scripts. There's no reason I couldn't direct a big project this way, with an on-set director that listened to what I needed and got the shots.

BLOOM: I just pulled up the video in my office here at the hospital, closed my door, and blasted it. And I loved it. What do you hope people take from it?

Dominick Evans: I hope that they enjoy it, first and foremost. I hope they love it and want to blast it.

BLOOM: I read a piece you wrote about being in film school and how your son, who was a teen, helped you on set. How has having a disability influenced the way you parent?

Dominick Evans: My son is also disabled, he's autistic. It really influences everything. I think it was a lot easier for me to recognize when he needed accommodation. Also, the division of labour was different between me and my partner. There are things I could do that she couldn't do and vice versa.

I home-schooled our son. So I did things like developing a curriculum. My son was a really big helper, so he'd get on my wheelchair and we'd go to the store and he'd get stuff off the shelf and we'd go shopping that way. I think it was a lot more hands-on parenting because I was much more actively engaged since I was at home. Everything physically that he needed my girlfriend would handle.

My son is a really interesting, fun character. He's super busy. He's in his mid-20s and lives with us. He likes to write. His mother is a screenwriter. And he likes to do things involving video games. We encourage him to follow his passions.

BLOOM: What was it like growing up with a disability and how did your identity develop over time?

Dominick Evans: I was a poster child for muscular dystrophy. I was raised in the Jerry Lewis system where I was told my life wasn't worth living and I probably didn't have a future. I needed to be cured and fixed. I really internalized that.

I grew up in a small suburban town of about 5,000 people and I was tormented. I was also queer and trans and I grew up in the '80s and '90s and didn't have language for that when I was a teenager. I didn't have language for being trans till I was at least 19, and I didn't really understand it. I knew I was different and not even disabled kids liked me and I didn't understand why. I'm multiply disabled and neurodivergent and that made it hard for me to make friends. I fell through a lot of cracks. I didn't get diagnosed with ADHD till I was 39 and that really led to a lot of failures.

I got through school because I was really well behaved. I wanted the teachers to like me because no one else did. I tried to do well and I was able to get by, but I could have done so much better with supports. I had to figure it out on my own and it was really hard. 

I was very active in the muscular dystrophy association and in the press. I started out as a performer. For the first 25 years of my life, I was a singer and an actor and musical theatre and opera were my genres. I was paraded around like 'Look, this little crippled girl can sing,' because I was considered female at the time. I was an act: 'Come and look at the amazing cripple.' 

BLOOM: So how did you get from there to envisioning a music video that embraces disability?

Dominick Evans: A lot of therapy! I'm still working on it. There's still a lot of trauma because I'm trans. So how do you get over trauma when you're still going through it? 

I said I was a performer and as much as Jerry Lewis paraded me around, I was lucky that I had a lot of directors that said 'You're really talented so I'm going to cast you.' That kept me from devaluing myself completely. If no one had believed in me I wouldn't be here today. I would have ended my life, I'm certain of that. 

I remember when I was in college a director wanted me for a small part in his play. He said 'I love you and I think you're great. Your voice is fabulous and I want you to have this solo.' He got a group of guys together and they built me a ramp to the stage. They didn't have money in the budget, so they made it themselves. It was a rickety old ramp that wasn't to ADA standards. That guy had a little bit of power to include me and he did.

The other thing that happened was I started to accept myself. For my first 20 years, I hated myself. I tried to kill myself when I was 19 but I didn't succeed, luckily. My mother walked in on me trying to hurt myself and stopped it. I would have gone through with it because I didn't value myself. I didn't think I was worthy. That's the message I got from the media. Peers would tell me 'Kill yourself. You're ugly, stupid and not worth it. Just go kill yourself.'

I wanted to make art, and art was important to me. That's really what got me through, doing a show or singing. Then when I got to college I met other disabled people and I really started to understand that disability doesn't have to be this horrible outcome that Jerry Lewis told me it was going to be.

Disability can be neutral. Some of it is bad, some good, some neutral. This blanket statement that your life is over when it's disabled got blown out of my brain and I could start accepting other aspects of myself. 

I grew up more in the LGBT community. I came out queer at 16 and trans at 21. I had already been involved with LGBT activism, so turning that towards disability was a natural progression.

In 2010 I went to film school and I was taught about every marginalized community except the disabled community. 'Where are the disabled films?' I asked. They said if you want to do that, let's set up a private independent study. So I did an independent study on disability in the media. I was taught how to analyze films on a deeper level and I began seeing all of these problems with disability representation, and that turned into my passion.

BLOOM: Is that how you met Beth Haller, the journalism professor who wrote Representing Disability in an Ableist World?

Dominick Evans: Yes. I was talking about it on Twitter and Facebook and I think we were in the same circles and we started following each other and found we were saying things that resonated with each other.

BLOOM: If you had to give advice to parents of children with disabilities, some of whom are trans, what would you tell them about how to best support their child's identity?

Dominick Evans: Follow your child's lead. Your child knows things better than you do. Listen to them. Listen to what they say about their bodies and what they say about their identities and give them the freedom to explore. Don't limit them. That's really what it is: listening to your children. 

I feel like a lot of parents of kids that are disabled just hear things from doctors, and doctors don't always know what they're talking about. Of course, doctors are experts in medicine, but for the lived experience of disability, they don't know about the day to day life the same way that we do because they don't live it. They only know what they see in a textbook.

When parents hear their child has a disability and it's going to be horrible, they internalize that. You can't do that. You can't let it get in your head and rule how you parent. You have to realize that there are adults living disabled lives and they are the guides to how your children can have a great life into adulthood. When I was young, the big thing was 'SMA will kill you,' but there are so many adults that have SMA, and there were even when I was growing up. The truth is we don't know what will happen. So let them live their lives.

BLOOM: What are your hopes for the future?

Dominick Evans: Personally or for the world?

BLOOM: Both.

Dominick Evans: For me I really hope I can keep making art and that I can bring others along with me. When I consult on films in Hollywood, it was Beth that really introduced me to that world. She brought me along. I feel it's important to bring other marginalized disabled creators along and build a coalition of disabled people whose voices don't always get heard. People like Beth make spaces and Beth is a mentor to me. She quietly walks the walk and talks the talk. I want to keep going upward with my career and bringing other disabled people with me.

I want to make a TV show that I direct from my home in Michigan so people can see that any disabled person that has the talent can do it. And I don't want that to be seen as something inspirational but as something realistic. We can do these jobs if we're given the right accommodations. I have chronic pain but I was able to direct the video Spaces from my bed in the place I was most comfortable in. 

For the world, I'm really passionate about a lot of causes. Being multiply marginalized, I hope that what privilege I have as a white person can be used to uplift communities that are really struggling. For me, I hope the world will embrace things like believing that Black Trans Lives Matter, believing in Land Back and respecting treaties. Indigenous people are fighting for all of us for the environment. Our world is on fire. What can I do, as a disabled white person, to uplift that message, because I can't get out there physically to protest? 

Photo below of Dominick with his son Robert.

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