Audre, a thin white hypermobile femme, lies on her back, balancing on a medical office stool and folding chair. Her shins press against the back of the chair while her hands rest on her ribcage. Pink light bathes her entire body while a blurry easel collaged with pictures of doctors, a drawing, and text is lit bright white in the background. The easel says THE MEN WHO FUCKED ME. Audre is in her underwear with ECG electrodes stuck to her breasts like medical pasties. Her expression is heavy and silent.
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On March 5, 2020, Audre Wirtanen danced through a stage of props—an IV stand, clipboards, doctor’s chairs—recounting experiences of mistreatment and misdiagnosis from systems that promised care. She impersonated doctors who hit on her and then ignored her, and read, word-for-word, the founder of Alexander Technique’s eugenics-laden writing. Her work, DX ME FIX ME, was one of the last performances I experienced in-person, at Gibney Dance.
I thought of this piece frequently over the past year, not only because the pandemic made ableism’s entrenchment glaringly apparent, but also because Audre’s organization—Hyp-ACCESS, founded with collaborator Laura Tuthall—has been busier than ever. Audre and Laura began Hyp-ACCESS to address the communal autonomy and quality of life of people with Hypermobile conditions. If you’ve never heard of hypermobility, I recommend exploring their website, which is a trove of information on Hypermobile conditions and disabilities, their neglect in medical systems, and their exploitation in the performing arts.
Audre and I spoke on Zoom in early March, 2021, like a strange one-year-anniversary ritual for her performance. Over a couple hours, we laughed about bad doctors, considered the fetishization of pain in dance, and imagined healthcare that actually cares.
Nora Raine Thompson (Rail): How has DX ME FIX ME stayed with you over this year?
Audre Wirtanen: I still have the script taped up by the mirror in my bathroom. It’s present. The memories that I performed are still my experience and that of the communities I work with, especially because of COVID. When I showed the work online in the fall, people really received it differently. People now seem to understand that the medical system is shit. When you saw it, before the pandemic, people had a hard time with it.
Rail: What do you mean?
Wirtanen: They responded in an ableist way. They felt bad for me, wanted me to be healing or identifying with some journey of processing. But when you’re stuck in the medical system because you rely on it, it doesn’t work that way. Some people thought I had made the entire thing up. But everything that I said in the piece was verbatim—what someone said to me, or something that has been published.
Rail: I’m also curious about your experience inside of it. What was it like to embody so many people who were—
Rail: [Laughing] I don’t know how else to put it. What did that feel like?
Wirtanen: It was interesting that I decided to be these men. I’ve never reflected on that. I kind of wanted to be these doctors because I could exemplify the way they approach their job, approach humans. They were a lot scarier in person. It felt like I was mocking them by being them.
Rail: Right, the audience was laughing.
Wirtanen: I didn’t know it was funny until I auditioned it! I think the neurologist who stands far away from me was the freakiest one. He wanted to stay at a distance, have no interaction with me, but he was making these massive decisions that impacted how everyone else treated me.
Rail: It’s hard to mock someone who won’t even show themselves to you.
Wirtanen: Exactly. Until I found his headshot where he’s posing with a guitar.
Rail: What was he trying to prove?
Wirtanen: [Laughing] Well-roundedness, I guess.
Rail: In my choreographic work, I have tried reclaiming words of people who harmed me. It feels like swallowing something huge.
Wirtanen: Well, the piece is not easy to do. It’s a clap back. When I made it, I was surprised it came out of me. The most emotionally exhausting part is towards the end. I’m on the stool, on my knees, going in circles—I’m in this weird, freaky state. It gave me something; it was cathartic.
Rail: That moment has stuck with me. You are reciting directives you have heard: “You’re the reason you are sick. You can think your way out of your body. I have. I can help you. I can fix you.” These were so familiar to me from my experiences in dance and somatics practices. How were you repurposing those words?
Wirtanen: When you’re in those situations, you’re being gaslit. You don’t understand what’s happening. Maybe you blame yourself, and at the same time, you’re starting to acknowledge what is happening. This piece felt like a way out of spaces where no one believed me. To impersonate these people who gaslit me, to make them as scary as they actually are, was a way to believe myself.
Rail: I’ve been enticed by promises of fixing myself in somatics practices, so it was intense to hear you recite the line “You can think your way out of your body,” out of its original context during the portion of the performance when you spin around on a stool. That elicited a different response for me and exposed some of the ableist systems those promises are built on.
Wirtanen: I had gone to a somatics practice, Alexander Technique (AT), in the first place because it did help me—there were aspects of AT that were really useful for me, especially when no one could give me information about Hypermobile conditions.1 Laura and I got into AT because we were both in a ton of pain and doctors wouldn’t do anything. It seemed to relieve some pain and we didn’t understand why. Now we study why practices like it help. But this AT training program was very violent to us, we call it “the cult.”
Rail: Can you say more about your relationship with Laura and how that led to Hyp-ACCESS?
Wirtanen: We started working together because we have the same condition and were attracted to this program. Laura had already started Hypermobile disability community work and programming there. Over the next three years in the training course, we worked together on further distilling the technique to be less harmful to us and others. We began offering programming for people with Hypermobile conditions, facilitating safe ways for people to figure out what works with their situations. We were getting noticed more, starting to pilot studies and do presentations. We thought about making our own program, but were fearful that without this AT course we wouldn’t get recognized.
But we were still getting injured in class, our students were getting injured in the training course, and speaking up for ourselves led to us being punished pretty significantly. We realized that what happened to us was going to continue happening. So, we launched Hyp-ACCESS in January 2020.
A black and white photo taken on a hot NYC summer day. Audre and Laura are in profile on a mission down the sidewalk. Audre, in the background, walks beside Laura rolling in their wheelchair. They both wear sunglasses, summer clothes, and short hair. They are both Hypermobile, white, and femme. Laura inhales from a medical marijuana vaporizer as they traverse together, pensive, serious, and sweaty.
Rail: What does Hyp-ACCESS encapsulate now?
Wirtanen: We coordinate care for people with Hypermobile conditions, especially those with neurological symptoms being denied care or ignored. We write letters to physicians. We do ABNR [Awareness-Based Neuromuscular Re-patterning] for people.2 We’re a part of Gibney’s Moving Toward Justice program. We’re under consideration for an NIH clinical trial of ABNR, which is exciting. We research the foundational eugenic lineages within our current systems. There’s a lot—visit our website to learn more!
Rail: And what’s coming up for you all?
Wirtanen: We want to open a disability-justice-oriented clinic for people with Hypermobile conditions. People on Medicaid will be treated equitably, primary care doctors and specialists will be paid the same, and part of the profits will go back into paying medical costs within a reparations-based framework. We will have oxygen therapy and infusion—services that people need but are hard to access now. With their consent, we’ll collect patient data to inform the decisions we make about care and to better this group’s quality of life, rather than generalizing the data to huge populations. We’ll have childcare, and, of course, a dance studio. We want this to be a patient-run community space, far different from what exists now.
Rail: This is such an exciting idea—how do you see it surviving and growing?
Wirtanen: I think we’ll survive because there will be no competition. Hypermobile conditions affect so many people, but so few know about it. We’ll be offering a workplace for new practitioners that is social justice-oriented. We’ll be offering an alternative way to get care instead of a terrible healthcare system. If an alternative exists, I think it will shift the landscape faster.
Rail: Have you heard of the Lincoln Detox Center?
Rail: I watched a movie about it recently, called Dope is Death (2020). The Lincoln Detox Center was the first acupuncture-based detox center in the Bronx, created by the Black Panthers and the Young Lords. There’s resonance in what you’re describing. It was a clinic created to help people detoxify their bodies from heroin, because all that was available at the time were methadone clinics, which maintained people in an addiction. It was an alternative that was popular and shifted the landscape. But the clinic was eventually crushed by the State. Many of the people who worked in that space were incarcerated. There is so much power behind crushing those options, because there is so much invested in the current systems. That being said, that force was deeply racially motivated. You might have different challenges and different advantages.
Wirtanen: Yes. Laura and I are both white, thin, and mask well. We’re good performers. We have a lot of advantages. We know that is part of what’s making it work. But it’s interesting to think about “dirty” community work. It’s the work that might be illegal, but is what the community needs to survive. No matter what, we’re going up against massive powers. The medical industrial complex has been one of the main tools of colonization. What’s freaky is that no one knows how it works. Insurance companies don’t know what’s going on, medical facilities don’t know what’s going on, research is all based in academia and academia is not a hospital. Some of them are, those ones are generally research hospitals, but who gets access to those? Nobody talks to each other. But, I’d rather die doing something that I believe in than standing by and watching.
Rail: Right, to be a real accomplice in upending these systems, you’ll have to go up against power and be uncomfortable.
Wirtanen: Yes, and the work is exhausting. But learning from and being in the disability justice community makes it worth it—we’re in a totally different value system that is process and justice-based. It’s a whole other way to think about human value. And I think I’ve learned that a community has to be deeply involved in making a process for it to work.
Rail: How has the dance community received Hyp-ACCESS’s work?
Wirtanen: Well, it’s been really great and also hard to believe. We’ve been teaching through freeskewl, working with Gibney. It’s hard for me to understand how we’re a part of this community in some ways, because dance values hypermobility so much. And the fetishization of hypermobility can be hard to witness. People with Hypermobile conditions are exploited in dance constantly. But dancers often dissociate because of the chronic pain, sensory deficits, PTSD, and we can’t just come in and point out they’re dissociating or in pain. Hyp-ACCESS exists to provide resources and center disabled people. It’s about choice-making and deciding how you want to take care of yourself. Our work, especially ABNR, is as much about internalized ableism as it is about proprioceptive therapy.
Rail: There are so many spaces in dance that are all about dissociation and pushing past pain. And the fetishization of that is so pervasive.
Wirtanen: Yes, it’s so strange to me to see images of people with their arms hanging out of their sockets as a way to market an institution. But still, even if I’m observing someone hurt themselves, I am respecting their choice. I have been there. Even when I’m teaching, I sometimes do things that hurt just because I’ve been trained to like the feeling of dissociation and having no sense of my body but still having some control. I did that for so long, and dissociation is protective and valid. People can do whatever they want with their bodies. But if there aren’t resources, that’s not okay. We actually took out an ad in the DanceNYC Symposium program to educate more dancers about what hypermobility is.
Rail: Do you think people in the dance community are realizing more about hypermobility?
Wirtanen: Oh, yeah. A lot of our work is listening to someone process their experiences and sensations. Sometimes people have flashbacks. We know it can be too much for people because it’s a history of trauma in your body, attached to emotional, social, and cultural factors. We end up saying frequently: “Your intuition is correct. You don’t actually have to explain why. If you believe something is happening, you’re probably right. You know more than anyone else who you’re going to go talk to—it’s in your body. You’re feeling the sensation.” It’s pulling apart that dissociation that’s been learned for so long. We observe people connecting their sensations in a way that they had been previously told didn’t exist. Some people don’t come back, and that’s totally reasonable if this work is not supportive. Ultimately, we’re in the dance community because there are people who need medical care and they’re not getting it.
Rail: Your piece really revealed to me how rare care is in so many systems meant to provide it. What does care look like to you, now?
Wirtanen: Care is facilitating the delivery of what people want and need. Care is justice. That’s it.
- “Hypermobile conditions are defined by joint hypermobility, but can include symptoms such as joint instability and chronic dislocations; tissue fragility and degeneration; severe chronic pain and fatigue; mast cell dysfunction (part of the allergy response); heart defects; acquired brain malformations; spinal damage and cord compression; spinal instability contributing to cerebrospinal fluid and cerebrovascular flow problems; aneurysms; and spontaneous organ rupture, among others (Grahame, 2000; Tinkle, et al., 2017a).” Tuthall, Laura and Audre Wirtanen. “What Are Hyp+ Conditions?” Hyp-ACCESS, 2021, https://hyp-access.com/what-are-hyp-conditions
- “Awareness-Based Neuromuscular Re-patterning (ABNR) is a new proprioceptive somatic therapy that explores access needs and body sensations to maximize quality of life and minimize risk of injury.” Tuthall, Laura and Audre Wirtanen. “What is ABNR?” Hyp-ACCESS, 2021, https://hyp-access.com/abnr