Filmmaker Suri Ellerton, Her EDS Journey & New Film Highlighting The Challenges Of Disabled Parents

Suri Ellerton is a filmmaker, has three children, and lives with Ehlers-Danlos Syndrome and various comorbid conditions. In this interview with Chronic Pain Partners’ Karina Sturm, Ellerton shares her EDS journey, what it means to be a disabled parent, and how her own experiences relate to her latest film project, “The Game.”

Sturm: Hi, Suri! I am so glad we get to speak today. Can you tell me a bit about yourself? Who is Suri? What does she do?

Ellerton: My name is Suri. I go by Suri Ellerton because Ellerton is my maiden name, and that’s what I started with. I am a filmmaker. I’ve been in the industry for over a decade or even longer – gosh, how old am I? (Laughs). And I have been producing for a decade. I have a company called Same Name Productions, which is developing long-form narrative work, mostly. Although, we do documentaries sometimes. And I am also producing shorts on the side.

Suri Ellerton

EDS Journey

Sturm: Super interesting! You live with Ehlers-Danlos syndrome, right? Tell me a bit about when you first noticed symptoms.

Ellerton: I count myself as one of the lucky ones because I had my EDS diagnosis at age three. I am now 36. So I have known about EDS my whole life. I had an excellent doctor in Delaware who was familiar with EDS and diagnosed me this young. My EDS journey started with hip dysplasia I was born with on both sides, and they actually missed it for the first six months of my life. And because of that, my hips were poorly formed, and I had to have lots of operations as a child. They kept trying to get the hips to stick, but they would not. Nobody understood why the operations that would typically work for dysplasia weren’t working for me. So eventually, they sent me to a specialist in Delaware, and he immediately diagnosed me.

As a kid, I mostly thought of it in regard to my hips and other joints. I was very bendy and could do all these party tricks and had some pain, but it wasn’t so bad when I was younger. I always had stomach problems, various issues with breathing, and allergy-related things. I had chronic pain and other things that didn’t relate to the joints, but I didn’t put it all together as an Ehlers-Danlos issue. Eventually, in my early 20s, I started to go to EDS conferences. And I realized all my other problems were all comorbid with Ehlers-Danlos, and that really started my journey of understanding Ehlers-Danlos.

Sturm: What comorbid conditions do you have?

Ellerton: Yeah. I have many comorbid conditions, for instance, pain all over the place, which has worsened over the years. As a kid, you just don’t think about your pain in the same way, but certainly, as my body has aged and after multiple pregnancies, I had a lot more pain.

Sturm: Do you feel like it helped you that you got diagnosed so young so that you could prevent certain injuries?

Ellerton: I think having a diagnosis is always helpful because when you’re wandering around not really understanding your body, it causes you to have more injuries, and then you do not know how to deal with them. So, for example, I knew to avoid certain sports. I also knew I had multiple dislocations, for instance, of my knee and other joints, and I understood what was causing those. For example, I stopped wearing tight jeans at some point during my childhood because those would always pop out my knee. In terms of the comorbidities, I wish we had looked into those a little bit earlier because I would have dealt with many things differently, such as my diet, asthma, allergies, or my POTS.

Filmmaking With A Disability

Sturm: Even though you knew you had EDS, you still picked filmmaking as a profession. I know firsthand how straining that is on the body. (Laughs). So how did you get into filmmaking?

Ellerton: I feel like my health journey has made me who I am. It’s been in my life since I was a baby, and dealing with all those challenges has given me a perspective of wanting to impact the world. When you grow up with some challenges, and you see the same issues in your own small circle, your community, it makes you want to change things. So I chose a profession that makes that kind of change. Additionally, when I was a kid, I had so many operations and spent a lot of time recovering in bed, where I would watch a lot of movies and behind-the-scenes footage. I remember spending ten hours watching Lord of the Rings’ extended footage, which was the most exciting for me! From that moment on, I knew I was going somewhere in that direction professionally.

But the physical part of it made me later go into producing because when I started out as a freelancer on set, I would really have to run around all day long. We talk more about disability these days, but when I started, I never felt comfortable sharing my limits or asking for support. I would just push myself. And I remember I would come home crying in pain and not being able to move the whole weekend. When you’re on set, you have an adrenaline rush, and you push through. But when the adrenaline would stop, I just cried in pain. As a producer, I can control things a little bit more because I get to be the boss, but thankfully, we also moved in a direction where we’re talking more about disability and access, and I’m really grateful for that.

Sturm: What accommodations would help you on set?

Ellerton: I have some POTS-related issues, so standing on my feet for long periods of time, I start to get nauseous, hot and dizzy. Standing is also not great for my joints and my muscles. So for me, it’s essential to have a place to sit, which on a set is not always a given, especially if you’re not in a position of power. Knowing my limitations in terms of physical labor is crucial, too. I used to be an assistant when I first started for some very interesting creatives, who would have me running back and forth all day long. To be fair to them, they didn’t know that I was struggling physically. I wasn’t open about that. But why don’t we always consider that possibility? I have also had times when I had to use a cane or a wheelchair, and obviously, most sets are not accessible.

Sturm: Do you feel like there are any benefits from having EDS or a disability as a filmmaker?

Ellerton: Yes, it gives you a broader perspective on the world. I think that it is because it makes you more empathetic to other people. When you have these challenges and realize that our society is not necessarily fully inclusive, it makes you look around and notice everybody has differences and challenges that you need to accept because you want to be accepted by society, too. That’s one advantage. I also have my superpowers of being bendy and fitting into small spaces. (Laughs). And mentality-wise, knowing I can get through a lot because I’ve been through a lot gave me strength and perseverance. I won’t let a block in the road stop me because I’ve had blocks in the road, and I’ve had to overcome them.

A boy playing soccer in a green garden surrounded by trees. Title: The Game, a short film by Charlotte Gwinner — The Game

The Game, A Film About Parenting With A Disability

Sturm: Tell me how you got into this latest film project you’re planning. I remember you told me before that it’s the first time you are producing a film related to disability.

Ellerton: I tend to avoid things that are very personal, but I’m starting as I mature to want to actually touch stories that are very personal to me. This particular film came together because I’m part of a group called BAFTA Connect in the UK. My colleagues in the program mentioned this project and its connection to disability. So I said, “Oh, interesting. I’d like to have a read of that. And when I read it, I instantly felt connected to it. It’s a subtle film. It’s not banging any drums or hitting anybody with what it’s saying, but it is definitely touching on a topic that’s very personal to me, which is the experience of a person with a disability or chronic illness in a parenting situation. I have not ever seen anything about that in the media. I signed onto the project before I even knew any of the backstories of how this project came about in terms of the writer and director’s connection to disability. I didn’t talk about my disability either when we started. A few meetings in, we were talking about the meaning of the project, and I decided to open up about my Ehlers-Danlos diagnosis. The director was really blown away, and she said, “I didn’t know when or if it would be appropriate to have this conversation.” It turns out the writer has early onset Parkinson’s, and this story was written from his perspective of being a parent with a disability. The director, on the other hand, has a partner who is quite ill and comes from the perspective of his carer and also the child. So the whole film is very personal to all three of us.

The story is about the self-denial that we sometimes have with our illness. We want to be able to do everything everybody else does, but actually, we cannot. And not acknowledging that difference sometimes puts a stumbling block in front of us. It was ironic that it took a minute for me to admit it to the director and for the director to tell me their side of the story because that is reflective of the character in the story who isn’t acknowledging his chronic illness, which leads down a path that is not ideal and sets up a strange dynamic between him and his son.

Sturm: I know you have several kids, too, right? Are they the reason you can relate to his perspective writing this story?

Ellerton: Yes, I’ve got a five-year-old son and a four-year-old daughter, and now a new baby. I definitely have been down this parenting road. I remember right around the time I was reading the script, I was having a physically bad day, and my daughter wanted me to come to play in her bedroom, which didn’t have a chair. So I said, “I’m going to come play with you, but I can’t play in here because I can’t get down on the floor. She said, “I really want you to play with me in the room, so why don’t you get a chair?” And I said, “Because mommy can’t carry the chair right now.” And so my daughter went back to the kitchen, and this tiny little girl picked up the big chair and carried it over to the room so that I could play with her. It really struck me that my little kids sometimes have to become adults. It’s difficult because, on the one hand, it is really positive in many ways that she’s learning about caring for others. But as a parent, it’s hard because you feel like you need to be the parent, you need to be the grown-up, and you need to be taking care; that’s your role. So there’s a lot of guilt associated with that, or embarrassment, feeling like I’m not good enough to parent.

And, of course, there is social stigma and discrimination, too. I have a friend who has EDS and is a single parent of three little girls. Child protective services got involved because they felt like she couldn’t care for her children because she had POTS, so they wanted to take them out of the home! We really need to discuss parenting and disability, which is why I am making this small film about it.

I’ve heard people say things like, “Should disabled people have kids? Is it fair to have kids” As a disabled parent, that’s such a painful comment to hear. Knowing that somebody out there thinks it was ethically wrong to have my children is horrible. Personally, I’m in a very privileged position that I have a very caring partner and other family members that help out. But we are all humans who have the right to live our lives as we want to live them. So the film also raises the question of how we can support disabled parents better.

Sturm: Yeah, unfortunately, all those comments you mentioned go back to this ableist belief that chronic illness and disability are nothing more but endless suffering and something that needs to be cured. Do you feel like you want to make that film to get rid of those stereotypes and teach non-disabled people about disability, or do you make this for the disability community?

Ellerton: I think it’s both. I definitely want it for the disability community because I think that we should see that reflected on screen. There are two elements to this. One is the feelings of a parent with a disability, the guilt, the embarrassment, the complex emotions that we have as parents with disabilities: I want those reflected on screen and to be able to make a person think about what’s normally unconscious to make it conscious. But secondly, there’s the aspect of the social-political conversation around parenting with a disability. And that’s more for the non-disabled crowd. I want them to understand the complexities, and I want a conversation to begin around it. The film deals more with the emotional side, but I think that it can spark a conversation that needs to be had.

Sturm: Now, tell me what the progress is. At which stage is the film?

Ellerton: We’re in pre-production. We have a crowdfunding campaign that we’re about to launch next week. [Follow the film’s social media linked below to get the latest information about the fundraising campaign.] We have attached a wonderful Irish actor, Rory Keenan, who will play the main role of John. And we’re casting the young boy right now. We’re just getting that ball rolling. The next stage is raising the funds that we need. We hope to shoot end of summer, early September, ideally.

Sturm: So, how can we support you?

Ellerton: Thank you for asking, Karina. We would love it if anybody wants to support it financially, but also by following it and cheering us on when the film comes out, that will be great too. We hope that we’ll be able to reach as many people in the community as possible to see themselves reflected on screen and to continue that conversation afterward. We also hope to do talkbacks as well as screening. So I hope that that conversation will be had and will be helpful to the community in some way.

Sturm: Perfect. Well, I’m looking forward to it!

Ellerton: I want to thank you guys. Genuinely, your organization has given me a lot of information and strength over the years. I’m really grateful that you exist. Thank you for being a supporter of our film.

Sturm: Of course. We need to stick together, right?

Ellerton: Right.

Sturm: Thanks for your time, Suri! Can’t wait to see the film. Bye.

Ellerton: Bye.