Thoughts on Crip Camp, and how spaces with disabled leadership can make one feel seen and heard
In a world that is overwhelmingly not designed for disabled, sick and chronically ill people, finding a space where you feel seen and heard is difficult and sometimes feels impossible.
What is ‘normal’? In this monthly column, Srinidhi Raghavan explores the understanding of bodies-minds and navigating spaces as disabled, chronically ill and sick people. Read more from the series here.
In a recent virtual access workshop, a participant apologised profusely to us when their screen reader wasn’t able to read the page he was on. The team running the digital access workshop remarked that they didn’t need to apologise for an inaccessible world. Screen readers often get stuck on pages, glitch or move in loops because of a wide range of issues, mostly that the architecture of the page doesn’t suit a screen reader user. Our statement of stating the obvious brought a response of gratitude from the participant that was a reminder for them that there are places in the world where they belong, with their disability and not despite it.
Disabled people for generations have articulated how they feel left out, neglected, forgotten in mainstream spaces — especially in public spaces, meetings, conferences and events. How our bathroom and rest breaks; our sensitivities to smells, tastes, sights and sound; our need for support to navigate a space — is all just “too much”. So we are either forgotten while building these spaces or treated as in need of special support.
While writing my column about access, I thought about how often I am part of spaces created by disabled people in comparison to those not designed by them. Are all spaces the same? Is there something inherently different about spaces with disabled leadership? These wandering thoughts led me to the memory of watching Crip Camp, a 2020 American documentary film directed, written and co-produced by Nicole Newnham and James LeBrecht. This documentary explores Camp Jened where disabled youth came together to build a space for themselves, learning and unlearning about what works and what needs to change. The camp provides us an insight into a world built by disabled people, for disabled people.
At Camp Jened, personal assistance was built into the fabric of the camp. Disabled people helped each other shower, get dressed, learn how to kiss, eat, get into the pool and move around. For many of them it was the first time they were living independently and learning to take care of each other. It was a time of exploration of their identities, personalities and growing together as a group. Contrary to the world outside where you wouldn’t be picked to be on a team, as one of the counsellors says in the documentary, at Camp Jened you needed to go up to bat. It was a space for disabled youth in 70s America to sit together and talk about freedom, privacy, dating — things the world outside hadn’t made room for them to speak. For many disabled people, going out to public spaces involves a lot of staring, worries about suppressing their stims (a self-soothing behaviour that involves repetitive movements or sounds), whether that café would be wheelchair friendly or whether someone would take offence because of the drooling or by some sounds that disabled people make. But here, there were others, all navigating the same discrimination and prejudice, together.
The documentary also traces the history of disabled activism in the United States and the formation of activism rooted in disabled people speaking for themselves. Watching Crip Camp was a reminder or perhaps for many who see this documentary, a discovery of the potential of spaces that are created by the community; the possibilities of care in these spaces and the imaginations and dreams that are built there.
In a world that is overwhelmingly not designed for disabled, sick and chronically ill people, finding a space where you feel seen and heard is difficult and sometimes feels impossible. In a piece written for Skin Stories, Nidhi Goyal, disability and gender justice activist writes about finding this space and the joys it holds: “The best part of being in the community is you don’t have to explain why you are you. You don’t have to be apologetic about being lost on the street or for taking time to sort out inaccessible currency notes, or asking for assistance to get to the toilet, or for making the waiter read out the menu to you.”
Many other disabled people who watched Crip Camp resonated deeply with this idea of community and belonging. Andrew Pulrang, disability justice advocate and co-cordinator of #CripTheVote wrote about his own experience of attending a similar camp: “I found [while at camp] that while disabled people are radically different from each other, we all know what it’s like to be underestimated and not taken seriously, by others and by ourselves, too. (…) And I learned [at camp] that it’s possible to be treated like a full, three-dimensional human being while our disabilities are also acknowledged and not downplayed or studiously masked.”
When the argument for spaces created by disabled people is made, it is assumed that segregation is what we are asking for. Especially in a world where we are already excluded. But disabled leadership has the power to create spaces that tell us a story of interdependence that many don’t witness; a story beyond the disability as limiting; a story of building for bodies that are different from the get-go. Of course, the spaces built by the community are not perfect either. They have their own challenges of patriarchy, casteism, sexism, homophobia among others to navigate, deconstruct and respond to.
However, there is immeasurable value to a space where disability is embraced, celebrated and held at the centre — not as a flaw but as a way of being in the world. Something that informs our existence and not something that impedes it. The act of embracing doesn’t automatically make the world accessible, less ableist, or even easier to navigate. Yet, it often just gives you a companion to sit with and talk about the mountain of stairs we need to build a ramp over.
Disabled people often feel like we are “too much” of something or the other. Often, when disabled leadership is present, these ideas of “too much” become blurry; and we can finally thrive as three-dimensional human beings with value, ideas and personalities of our own. Watching Crip Camp, reading books by disabled, ill and sick people, being in spaces with disabled leadership all are insights into the worlds we could create when there is intention, care, and access built into the foundation.
Srinidhi Raghavan is a writer, researcher and trainer. She works at the intersections of sexuality, gender, disability and technology. She works on programme development with Rising Flame and is the co-founder of The Curio-city Collective.
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