In part I think because of my athletic ability and the invisible nature of my illness, I don’t “fit well” into the obvious disability categories. Yet I face discrimination from the "able" community because of fears about what kind of burden my condition will create. I personally fear that lack of visibility makes it difficult for organizations to conceive of how to "capitalize" on my disability as a cultural marker or in business. You are welcome to tell me this is not true, I'd love to hear it. But it's a shadow that I sense, and often more tangibly feel.
....Don't worry, though, I got this one. That's the work I've been doing over the last 10 years as a cultural producer. I can work with my disability both practically and artistically, and I have done so in very prove-able and substantial ways.
I persist as a solo endeavor because over 28 years of movement and 18 years of illness, I have the tools to give myself a higher quality of life through focusing on my gym practice and my art, which is how I survive physically and spiritually. These things happen in the cracks, the interstices of life. I carry myself, othered into my own singularity, a burden to no one. I would love to meet the company that is brave enough to see what I have to offer and to make use of my assets, which are many. I do not fit your molds. I am my own mold. And I should be valued for it. That is all.
"Entrail Labyrinth" 2018
"Undress" paired with "My Plastic Body" Costume/ Collaboration
I waited two years for this chapter…
It has only been made possible, I believe, due to a recent uptick in my mental health - the result of a dietary change (no sugar/no processed) that has given me back some energy and control that I had truly given up believing I could have. I feel gratitude on material and energetic levels that I’d been blocked from even knowing. I feel hope for the first time in a long time.
The Changing Body, Changing Mind Series came about out of my frustration that there was no model for navigating gambling odds with autoimmune disease in the United States. I decided to create what I could offer within that gap, which became a personal memoir and crucible. Now that I look back, I can’t believe I published so freely, and I resist the urge to “edit history” and amend the rough edges, erasing all the drama and mistakes. This is something we all likely desire to do in some areas of our lives.
I stopped publishing in late 2016 due to a malicious cyber attack that ended up both physically destabilizing and quite mentally unsettling. The Philadelphia police were of no help (luckily the Wisconsin PD was). My housing, which had been tenuous for years, broke down because of it, and I left Philadelphia to take shelter with friends and family in my home state. A good friend and mentor died a month later, and I went into trauma therapy. I officially “gave up” on the holistic path for a while, and then suffered an adverse reaction to a common autoimmune drug (undefined and possibly neurologic), which destroyed my sleep for 6 months due to the uncomfortable physical sensations. Worse, it left me with a deep sense of terror that if it were neurologic, things could get veeeeery much worse. Simultaneously, I was under the pressure to re-build a life half-way across the country, living in two cities 2.5 hrs away from each other, trying to maintain some semblance of a grip on my career. Needless to say, perhaps, this perfect storm is what finally cast me into a deep depression, which is starting to lift two long years later.
I started this series more generally and share this in particular because I think it helps to know someone who has these kinds of experiences. If it’s not familiar to you, you might start to recognize the kind of dehumanizing pressure that the “bootstrap” mentality has on us humans. I have repeated encounters with the concept that some things in life just “require a little more grit at certain times”. While I agree that discomfort is necessary for growth, I have always maintained that there is a line where it passes into cruelty. This is what I felt through this experience on an abstract, cultural level. It’s not just cruel to the individual undergoing health crises, but to the community as well because relationships are taxed physically and emotionally by these circumstances. I do not have a lot of answers for this dilemma, I work on the level of my personal relationships and through my own projects and aspirations. I think this is the close and intimate work that is necessary. It’s not a sweeping policy, it’s a humble acknowledgement of limits. It’s the piece we can control, our inner refinement and how that reflects our social ties. I do not have answers, but I have hope.
I have been a member of the Philadelphia arts community for ten years now, producing as Lion or Fox for the last 4. It feels increasingly like my life and career hang in the balance between whether this city will recognize its gaps around ableism, or whether it will continue in a lopsided “social activism” that makes space for some, but not all. We have a choice and opportunity to connect dots and to bridge communities by making space for chronically ill and disabled artists. Health is the grand unifier across social and political divides, and it can create substantive conversations around fundamental human rights and dignity. I see it as a great open window!!! But what I experience, with few exceptions, is a scarcity mentality around supporting work that is beyond the scope of past institutional agendas, which means leaving out the conversation around disability.
Good news, though… we are in a new paradigm! This is exactly the time to embrace change, to keep moving forward with what’s working, and to throw out the rest to allow space for the new. What needs to happen is that everyone from individual to institution needs to step up in their social relationships and advocate for the representation of ill and disabled artists. This goes for the presentation of their work on a professional level, and in the day-to-day advocacy required to navigate community systems. This is a request for disability to be more than a community to be “othered”, but to be treated as part of YOUR community.
One of the main reasons I got my MFA was because I recognized in myself a potential to achieve a goal that I was committed to wholeheartedly, to be an artist of worth. I recognized that skills in the arts were primarily being used to assist disabled populations in ways that were cathartic (surely of value) but not necessarily aimed at the kind of transcendence that all great works of art carry… the ability to shape a culture. I believed in the importance of art as a tool to transform the minds of a population, and I saw the need for a voice in the community that could embody these unique hardships and translate them through aesthetics. This vision required a platform as well, and so I relied on the strength of my conviction and artistic prowess, reaching out to fellow creatives and producing works of personal and communal significance. I’ve never given myself the credit to call this “community building”, but it’s true this was and is… a common thread of dedication to a shared impulse to create our world together for a moment, or maybe for years, outside of institutional walls.
Outside of art, I continue to speak up and advocate on so many levels in my personal life, from health care, to work environments, to relationships. I take ten minutes, or an hour, to hand my lense to others so that they might see my view for a while. What it is that I envision for the future? I see a vibrant community conversation around chronic health problems and disability, so that disability is no longer socially disabling. I would like to build a world where people will come to see the work of disabled artists because it’s moving and noteworthy, and because they WANT to. This is not a chapter I’ve experienced yet, but one we can write together.
Peace and creative love.
Artist, writer, seer, circus.
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