"I Want to Move, I Want to Embrace Change": Kelsey Peterson's Journey to Dance Again

By Xian Horn

Kelsey Peterson and I have had very different experiences of disability—I was born with cerebral palsy, and she became disabled as an adult. But watching her film Move Me, I felt deeply connected to her. The camera takes us into the most intimate places in our lives: we see her in her bedroom, being dressed by her aide, in the bathroom, and all the places in between. We witness a beautiful woman in a state of reflection: considering who she was and how this life-changing event has shaped who she is becoming today. She gives us an unvarnished look into the complexities of external and internalized ableism within herself and within the culture around her.

What I love about Move Me is how authentic, heartbreaking, humorous, and complicated it is, the journey through many shades of grief and into a full life. Through her vulnerability, intimacy, and a return to dance, she poses a question that applies to us all: are we simply surviving, or are we deeply seeking the pleasures of life?

In Kelsey, we meet someone who is beyond simply self-awareness; she is in the process of loving her body and life in all the new forms it is taking. I’m in awe of the woman before me, who I now call my sister and a friend, and I am certain you will be, too, not because she is otherworldly, but because she is beautifully human.

Xian: There was something about this film that felt like poetry, including the title, Move Me. I would love to know who came up with the title.

Kelsey: We’d been through a couple of titles ’cause the film changed. But Move Me struck me and I [thought], “Oh my God, that’s it.

I didn’t realize when people saw the film how many reactions were going to be, “I was so moved. You really moved me.” I [didn’t intend] the pun, but it was so natural. That title has many meanings; obviously, one, losing the function of my body meant I needed someone else to move me.

And two, that I really wanted to move still, needed to explore movement and my own body and loving my body, and what I could still do, in so many ways: physically, mentally, emotionally, and spiritually. So that title really has so many meanings, but I think especially that I want to move, I want to embrace change, I want to adapt and connect with my whole entire self. I also want to inspire people to move and feel changed by seeing this film.

Kelsey Peterson, a young woman in a wheelchair, practices dance in a studio in front of a mirror

Xian: As co-director, how involved were you, and what was the process of working with other people like?

Kelsey: I say this not for my own ego but because, as a female director with a disability, I think it sends an important message to our audience: this was absolutely a partnership, but there’s a reason my name was listed first, and when it came down to it, I was the captain of this ship.

Don’t get me wrong, I couldn’t have made this film without [co-director] Daniel [Klein], and wouldn’t have wanted to. His experience and talent speak for themselves. There’s a sensitivity—a grace and intelligence—he added to my story that truly made it shine and I’m so grateful to have had him as a film partner. But he understood that stories about us should be told by us, and for that reason, he respected that ultimately this was my story to tell. He did whatever he could to help me do that.

Xian: Do you think you could talk us through those first few months or that transition from, “I’m a dancer” to “now I live in what’s called a disabled body and I’ve gotta navigate what’s different”?

Kelsey: The first few months [there was] a lot of disbelief and thinking maybe this isn’t my reality. “Maybe I will get my body back to the way it was.” And a lot of sadness in slowly realizing that that was not going to happen. [For] the first three years I cried a lot. I’d invested so much into my body and it was so much a part of my identity, in more ways than, “I’m a dancer, I’m a yoga teacher, I’m an athlete”—and I was all of those things, which is a lot of things to have your identity wrapped up in your physicality.

Kelsey Peterson and co director Daniel looking at video monitor, both wearing masks, behind the scenes of shooting their documentary — Kelsey Peterson and co-director Daniel Klein, while filming *Move Me*.

Also my humor was really physical for that reason. My relationships were very physical; I was a very affectionate person. I was a very sexually active person, and I loved that about myself. I had a lot of confidence that came from the love that I had for my body; the curiosity, the exploration that I had done with my body, and the time I put into knowing what it could do and how to live in this vessel, you know? There was a really deep intimacy there that I don’t think most people have.

I don’t think [most] people have had the level of intimacy that I had with my body throughout a lot of years of my life, and I was really blessed to have that. There’s so much you don’t know until it’s gone. This is a totally different way of relating to who I am, to my world, to the people in my world, and especially to myself as a human on this planet.

It’s an ongoing process because, really, I’m a 10-year-old in this body, you know? And that’s pretty young, like an adolescent in terms of figuring out how my body thrives and how to listen to it. There’s this curve of adaptation I’ve been going through, and I’ve gained a lot of wisdom through that process, but it hasn’t been gained easily and sometimes you’re smacked with it. It’s a hard thing to find grace within.

I’ve had to lean into self-love and literally research it. Reading Sonya Renee Taylor’s book has changed my life. Che Che Luna, they have changed my life, Adrienne Maree Brown, they’re people I’m finding and relationships I’m forging that are changing the way that I love myself, see myself, and [live] my sensuous experience.

With dance, I had to abstract what my definition of a dancer was, which was awesome in a way because I had the tools to do that from my experience with choreography and composition classes. We abstracted choreography to be something completely different: “Oh, let’s switch this level, switch the tempo, switch the intent by putting a different thought.” “I want this to be juicy instead, or I want this to be hard or staccato.”

disabled dancer performing dance as a duo, both in black leotards on dark wood floor — Kelsey Peterson and Leah Westlund performing during “A Cripple’s Dance”

I was pulling from these tools I’d learned throughout my life and also having to let go of my ego and all these other layers, emotionally and mentally, of embracing who I was through relationships and a lot of self-work.

But all of these things combined together were the key, shifting how I saw myself because right away I was like, I’ll always feel like a dancer.

I still feel like a dancer, but I didn’t know how to be a dancer anymore. I shelved that. “Okay, that’s done. I’m never gonna do that again.” That was just my own ingrained ableism and my own grief. I think really getting in the way of that abstraction and that shift—and then [musician] Gabe [Rodreick] coming into my life asking me to help him—was this segue away from my ego and my pain and all of the other bulls—. “It’s not about me anymore, I’m gonna help my friend’s project.” Then I was able to step back onto the dance floor and explore. And be curious again. Okay, I can be this person and I can change the bar.

I’m creating this bar in my own head and I’m letting society, or whatever I’ve learned throughout my childhood of what a dancer is, dictate that bar—f— that bar!

Xian: I loved your and Gabe’s dynamic together, and also your stories are dramatically similar as well. Even how this happened to both of you. I’d love to hear about support systems and how that’s helped or hurt you. I also think parents can be complicated where they’re loving you and supporting you, but sometimes make it worse, or help to make it better—and it can sometimes be both.

Kelsey: It can sometimes be both. My mom has been really good at loving me in a very graceful way, but also…very fiercely loving me. She’s really let me grieve and learn and go through all of this at my own pace. And [she] has been eager to learn how she can show up for me, too.

[At the same time], I went on vacation with my family and we were going out on the pontoon boat. I wanted to get my chair onto the boat so I could sit in my chair, and I think my brother said something to my caregiver like, or in front of her, “I don’t think that’s really necessary.” And my caregiver said, “Well, I think that’s Kelsey’s choice.”

Maybe you think I’m being an inconvenience to want my chair on the boat. I think I’m still learning how to [speak up and advocate for myself]; I’m still learning to be more assertive with moving through the world and listening to my body, for myself, and also sharing what I need in any particular moment. I can feel that muscle getting bigger.

Xian: Your dad was also one of my favorite parts of the film. But also he got me really riled up at one point. I was so touched by your closeness; to your humor. It was so obvious, your natural affection for one another. But when he expressed his anger at you for what happened…I got angry.

Kelsey: I would too, I mean, I wanted you to [get angry]. It is kind of infuriating. My mom is still triggered by seeing that. It makes me sad because I think ultimately, it was unnecessary. And he knows that now. It was just him projecting his own pain and his own bulls— onto me. I’m trying to live my life right now, I’m the one in this experience, and you’re telling me you’re still pissed at me. [This] only happened five f—ing years ago.

But there have been people in my life who really made me feel like I inconvenience them by changing my life in this way. I was definitely a daddy’s girl, it was painful for him. He made it about him and his pain for many reasons, and it was hard for us to be close. I’d always sit on his lap or come to him and give him hugs. And the chair puts a wall up sometimes and makes it hard to engage in that way. It was almost like he was scared to figure that out. That was definitely hard.

I was really messed up about it after he died. It’s three years [since he died] on October 25th. I’ve healed a lot. I talk to him, I pray, I ask him for help, I’ve apologized to him—we’ve dealt with a lot of our s—, you know?

Kelsey, a woman with spinal cord injury, holding a spine vertebrae

Xian: Absolutely. Can we go back a little bit to the relationships that have evolved, and some that have devolved? Do you try to get the other person to see your side of it? In navigating how relationships have changed, what has been your way of working through that or coping?

Kelsey: Like everything in your life when it changes this much, with a spinal cord injury, everything changes, including your relationships. And there were definitely some that naturally fell by the wayside. One of the big reasons was that I used to party a lot, so I wasn’t engaging in that world anymore.

Then there were ones that were much deeper. Some of them took a lot of care to be able to cross the bridge because I have a life experience that, in the beginning, neither of us knew anything about; I’m all of a sudden a person with a disability. I don’t know s—. And I’m in costume—I mean, it really is, because of the many layers and nuances of what your identity means and also how living is going to be now. On so many levels: socially, economically, accessibility-wise, and sexually.

I’m gonna draw from one relationship in particular. My sister and I had a really hard time because I’m the older sister and so I’m the one that took care of her. Switching that dynamic a little bit—“Hey, I need more help now”—she was very resistant to that. Also, I was made to feel quite often like an inconvenience. She did not wanna do care work. She even was warned by one of my nurses (which pisses me off) against it. [The nurse said] very vehemently, “Do not do care work for your sister, it will ruin your relationship.”

I try not to have people in my life, like friends or family, do my care work because it is a hard boundary, I would rather just have my friends be my friends. Have my family be my family. But sometimes you wanna do things in life and that means you need your friends to help you. Big deal.

Xian: Or the caretaker doesn’t show up.

Kelsey: And so the people you love have to show up. And so we’ve had a lot of hard conversations and fights and time away. And I now know I don’t ask her for help unless I absolutely need it. That’s really hard.

I think the hardest thing for me has been getting certain people in my life to understand this whole way of living that’s very selfish and “me, me, me,” is really hard to witness now as a person with a disability because life could have so much more compassion and be so much easier.

I’m now much more thoughtful about the relationships I go into. And the qualities I look for in people, the energy exchange I feel with people. I will give in my own way, but only if I feel like this is a two-way street. And for a lot of able-bodied people, there’s just this real ableist imbalance of value.

Since becoming disabled and suddenly submerged into a world of care work and a level of humility I’d never known, I realized something invaluable:

By becoming “overly civilized” we have been conditioned to lead these insular lives that encourage and celebrate independence in an unhealthy and unbalanced way. For that reason, many of us are lonely and exhausted. And on the other side of that wall is a life of interdependence that celebrates our differences and nurtures our interconnectedness.

In that space is where we can find more joy, freedom, grace, and ways to see the different layers of value in ourselves and in others.

Kelsey, a young woman in a wheelchair, poses in an art studio in a black and white portrait

Xian: I wondered, what is a healthy level of hope? Have you figured that out yet? Because you mention it in the film.

Kelsey: I feel like I hold this dichotomy of acceptance and hope in my crippled little hands.

I would be lying if I said that I don’t want to get up and walk and dance and have my body be the way it was before, you know? And I miss my life being easier and having those joys of life that I simply can’t do the way I used to. Some things I can’t do at all, and some things I had to adapt and relearn.

It’s become easier for me to do that, ironically, the more I love myself. Before I was much more in the hope zone. And for that reason, I was really struggling with feeling like “me.”

I talked about this at Unite 2 Fight Paralysis symposium. They watched the film this last weekend. I was on a panel and it’s a room full of people, a lot of whom were just newly injured. That’s a fragile place to be in. I watch the film now and [think] damn, I’ve changed a lot. When I’m in that space I very easily can feel how I felt at that time. And there are people who have been fighting for a cure for years—and what is a cure?

Xian: And what does “cure” even mean? I’ve had a lot of conversations about that, too.

Kelsey: Yes, I know. And so that’s why I say “functional recovery.” Or “recovery of sensation,” because I do want those things. It could improve my quality of life, I could be more independent. But through the making of this film [I] have really prioritized living in the now.

That means loving my body the way it is. I’m going to keep working toward that and telling myself I love my quad belly and my skinny little legs. And loving myself and my experience. And optimizing my human experience. Yes, as a disabled woman.

Xian: My background in advocacy came from running workshops on beauty and self-esteem for girls and women and people with disabilities—I love that we’re talking about this, I think it’s so important. I would love to go back to your speaking to this group of newly disabled folks. What was your message to them? What was most important to share now that you are 10 years there?

Kelsey: I had one guy that—and I couldn’t see him, but I knew he was a high-level, probably a quad—he said he was newly injured and said, “You say this line in the film, ‘The closer I get to acceptance, the more free I am.’ That was really hard for me.”

As I say, I’ll always want my body back, but the closer I get to acceptance, the more free I am. I have to let those two things coexist. To hear that guy struggle with that idea of accepting himself, because he said, “I feel like that means I’m giving up.”

I feel how hard it is to be in that place, how much work it is to get out and actually start loving your life and who you are again.

Acceptance and complacency are very different things. It’s also like you’d be giving up on yourself if you didn’t work to accept who you are in this moment. You need fuel to live your life, to fight for anything. If what you want to do is fight for a cure and get into research or advocacy in that way somehow, absolutely do it. But you also need to make sure you’re taking care and loving yourself. “Okay, who am I now and how do I love my life?” Otherwise, you’re never gonna be able to do anything.

Xian: We didn’t even get to talk about sex!

Kelsey: I know. I know. That’s one thing that I look at now, “Damn, I’ve changed so much.” The conversation with Sandra where we talk about orgasm as the holy grail, orgasms are f—ing awesome, I agree. Part of that for me is the attachment of the ego to orgasm, especially for men: “If I can’t make my girl c—, how am I ever gonna feel like I’m enough?”

There’s so much there. I took this course called Sensual Self-Care Academy through Che Che Luna. If you don’t follow them, you must, they’re so sensuous and wild and freaky and cool that they give you permission to just be your authentically sexual self, whoever that is.

I’ve really gotten to explore my sensuality in this body. And be more excited about that and open to that and see the fun and the beauty that lies ahead that I can still access. Finding these new pathways to pleasure is really fun and cool. It’s very empowering. I see myself on screen, “damn, I’m so glad that I’m in this place now.”

This is why I love Adrienne Maree Brown, too, because I’m learning so much from her about how pleasure is power and [there’s] so much fun to be had on so many levels. Leaning into the pleasures of life is so huge in terms of our personal health and well-being.

That’s hard, a whole other thing to learn when your body changes dramatically. “What feels good to me now?”

Kelsey Peterson interviewed on Minnesota Public Radio

Xian Horn serves on the ReelAbilities Film Festival Committee and Advisory Board. She has consulted and spoken at companies and cultural institutions such as NBC Universal, Target, Amazon, Zappos, Microsoft, the U.N., and the Whitney Museum among others. Her nonprofit, Give Beauty Wings, is focused on the empowerment of all people with disabilities and fostering inclusive leadership. Writer Xian Horn seated and smiling looking off camera holding assistive canes