What are the Accommodations of Your Dreams?

I have an emotional support balloon named Walter. Walter is a colorful balloon on a leash made of kitchen twine. I would, in the world I am dreaming of, take Walter everywhere with me. We would go to the grocery store, to the rad femme-focused co-working space I belong to, and ride in the tractor on my father’s farm. We would sit on grant panels together. He would come to the studio with me, into the rehearsal room, and to my desk. I would even bring Walter when I teach. Walter would sit quietly in the background, and no one would try to distract Walter while he’s working. Historically, people with disabilities have not had consistent access to buildings, schools, legislatures, museums, and housing. Yet we imagined—and continue to imagine—how our inclusion might manifest. Even when Americans with disabilities experienced long-term institutionalization, with no expectation of integration, we imagined a life in the community. Even when many Americans with disabilities were subject to somatic treatments, including sterilization without informed consent, we imagined we could have bodily autonomy. People with disabilities imagined that we could have access to public life—to work, school, and civic opportunities.  Then in the 1980s, through visible actions, we showed others how profoundly impossible access was, particularly in the built environment. Activists with physical disabilities painstakingly climbed the steps to inaccessible buildings in Washington, D.C., while lawmakers met inside. Footage of those activists climbing and crawling up those stairs were on all the newscasts. This put pressure on politicians to make the Americans with Disabilities Act a reality, not in some future utopia, but right then, in 1990. The ADA and other related federal legislation granted the right for people with disabilities to be included by requesting accommodations. An accommodation is a change that creates access. The ADA is sweeping legislation that has led people with disabilities to, indeed, become more present in public life. It has been upheld by the Supreme Court in the Olmstead decision, affirming people’s right to live in the least restrictive setting possible.  Even in the last few years, consent decrees related to the ADA and Olmstead have dramatically shifted people’s access to public life. Yet, we are still imagining, and still testing, the limits of access by showing what is inaccessible and what is not. I am writing this essay as part of the Mn Artists Presents program that bears my name because I wrote a proposal for an evening of events that centered artists with disabilities. The Walker was ready for us. Walter brings me joy. Walter is an embodiment of my wish that, as a disabled person, my differently-experienced world could be centered sometimes. Walter is an embodiment of my dream that if I have a flashback, Walter would sit quietly beside me, witnessing how long trauma has affected me, affirming that its effects are real, and that I persist despite it. Walter would nudge me to get my attention if my mood was speeding up too much, edging into mania or slowing down too far into depression. Walter would place himself between me and people who are too close, so that I don’t feel hemmed in. Walter would just know when someone was going to set off a strobe light and stop them long enough for me to get away, to prevent a blinding three-day migraine. Best of all, everyone would be so charmed by him that—instead of being jealous of Walter, or  angry that I had access to a Walter, and they did not—they would imagine the accommodations and supports they needed, in order to be fully in the world. When I began imagining Walter, I knew that I must create a being with charisma. Walter must be charming because requesting accommodations is often met with irritation and fear. Many organizations do not budget for ASL interpreters, captioning, or audio description. Worse, many people may look at me differently if they realize I need accommodations. While the ADA does not require medical records or therapy notes to prove that an accommodation is needed, it can feel like a diagnosis or functional impairment or the phrase “because of a disability” is already too much to reveal. To ask for access is to risk being labeled. To do so requires coming out as disabled. To ask for access reveals the extent of need, risks people treating you as less than, and risks positioning oneself as disabled enough for the accommodation. But when I can receive an accommodation, it also allows me to provide access for others. It also gives me a sense of who my community is: a reminder that I, like lots of people, have to ask for the accommodations I need. And, with that as a reminder, that asking for accommodations is something we as people with disabilities do—I asked artists with disabilities, what are the accommodations of your dreams? And they answered. I share their answers to buttress the fact that those of us with disabilities need solidarity and community in reaching for our dreams. While there is commonality in the experience of disability, there is also difference. Even the same disability may be experienced differently, because of other intersecting identities related to gender, race, or class, or for other reasons. Accommodations are also deeply individual. By sharing this space with other artists with disabilities, with different identities and different subjectivities, access needs begin to become clearer. Peder Hagen sings Judy Garland songs in drag. The drag character, Iris O’Connell, is the accommodation of Hagen’s dreams. Peder says: “I feel like Iris was there when I was first living in the house I live in now. I went to Pennsylvania and she was there for me. She is my alter ego. Sometimes I feel on the outside trying to look in. Being socially a late bloomer, I learned skills along the way to overtake challenges I might have with words, making friends, communicating with others. Iris relates to my life because we both have struggled in the cultures we live in. We both are very giving, open people. Iris struggled with being in a small town, and I struggle with technology and social cues. She reminds me of who I was before I moved, of my grassroots. She helps me stay grounded and remember who I am.” Performance artist and creative leader Scott Artley imagines “a pause button, like the button on a remote control, but it hangs like a bauble on my keychain. When my blood sugar goes low at a job interview, or a first date, I could discreetly tap it in my pocket, stop the world in its tracks while I drink some cranberry juice and wait 30 minutes for my brain to quit spinning helplessly. It could sit on the shelf next to my bed, a snoozed alarm for when my body or my heart hurts too much to get up. Tap it to start again, like nothing happened, nothing lost. I’ve never let myself pause. Honestly, I can’t afford to. But what if the world stopped for me?” Interdisciplinary artist Parker Genné draws on water and circles in her creative answer, evoking how one gathers oneself, and also lets go. 

“Circle round babe, you can fly in all directions,” Genné says. Filmmaker and installation artist Liza Sylvestre says, “I am tired—tired of scheduling CART captions, tired of follow-up emails and hours of extra labor to ensure I will have access, constant reminders to everyone to consider access, negotiating my ‘reasonable accommodations’ at work, managing expectations, stating and restating and then observing how quickly people forget. I’m tired of taking on the work. I’m tired of the expectations I put on myself—my guilt for my non-fluency in ASL, my shame for the cost of CART captions, my anxiety in the checkout lane at the grocery store when the grocery store employee is wearing a mask, my ingrained expectation to constantly compensate for something that is wrong. The accommodations of my dreams require others to carry this weight. It exists in a world where I do not grow up believing a part of me is wrong or a flaw in need of correcting.” Writer and ceramicist Donna Ray gets colloquial and community-centered. She says, “I dream that our communities’ future is one which has space to welcome artists to join us at whatever point in their lives they find their voices. Their aspirations create interactive projects around themes that encourage recognition of tough truths. We invite participants to leave a piece of themselves, and some in their arts.”

Filmmaker Atlas O. Phoenix (they/them/theirs) responds by listing examples of relational care. They say, “To me, it’s being told you have value to them and to everyone around me. To me, it’s being held and told, ‘Everything is going to be alright. I love you. I’m here for you. You matter.’ To me, it’s laughing uncontrollably at the smallest thing together. To me, it’s going with me to an event, where I have to read an essay about terrible things that happened to me, and they are present in the audience to give me a point-of-focus when I get lost. To me, the accommodations are unconditional love, respect, and kindness.” Writer and artist D. Allen imagines, “Somewhere there is a large room with comfy armchairs, couches the size of beds, pillows of all shapes/sizes/firmness/textures, low lighting, plants, windows, blankets, quiet sounds, and all kinds of mobility aids and assistive devices. There are no stairs. I want to go there alone, sometimes, and sometimes bring a friend or two so we can talk, or spend quiet time in each other’s company without me crashing into a pain flare caused by hard chairs and inaccessible spaces. I hope someday we can be there together.” Poet Rubin Hardin zeroes in on the connection between individual accommodation and societal shifts. “So many of the issues I have faced were due to people who did not understand I was disabled or that they were harming me. This harm has affected my ability to access medical care, jobs, and housing. Understanding means increasing compassion towards disabled people while also working hard to stand up to people who misuse their power. This understanding has to be paired with compassion as well as a continuous attempt at disassembling the institutions that harm me specifically and disabled people as a whole. Individual accommodation and large scale change are synonymous.” There is a resource, funded by the federal government, that offers suggested accommodations organized by functional impairment, disability, or work function. When I look up PTSD or migraines in AskJAN, they offer accommodations that help with concentration or memory or noisy environments. While AskJAN is an amazing resource, I’ve never seen an emotional support balloon in their taxonomies—not even Walter. The accommodations of my dreams might be as simple as access, equity, and inclusion, or as complex as rubber and kitchen twine and imagination. Access seems hard, but it’s not nearly as hard as it seems. Rubber and kitchen twine are simple, but to get to Walter you need joyful complexity. The joy of Walter the emotional support balloon is valuable, and so is access to major institutions and audience. Also valuable to me is inclusion as fully myself, as a person with a disability, a person who needs support like Walter. I imagine a world where Walter isn’t remarkable: where my difference can be read and accepted, but not judged.