March 25, 2019 - 21:49
An Invitation to Dance had apt timing: I watched it hours after getting home from a dance party I attended with Aidan*, a young man with autism, who I work with to build life and social skills. The dancing scenes in the movie were strikingly similar to the party, with a mixed ability group twirling gracefully and twisting freely. Except for one thing: we did not feel this invitation to dance.
This party was for adults with disabilities, so I was surprised when Aiden was greeted with frustration and eyerolls from the other party-goers. Most often at events with other folks with disabilities when Aiden takes longer to adjust and learn social norms, he is met with patience and understanding. But when Aiden could not keep up with the Cupid Shuffle on the dance floor, irritated dancers kept telling him to “get out of the way.” At first, I felt bad about it. But Aiden had every right to be on the dance floor, just as much as they did. As the movie argued, “it’s not just about basic needs, it’s about the right to pleasure.” Why should I try to force Aiden into an isolated corner when he was content, and not hurting anyone, on the dance floor?
After watching an Invitation to Dance, I wished that our dance had been more inclusive. I wished that other dancers had asked themselves what they could do to welcome people with all different sorts of disabilities.
Today I think I gained a deeper understanding of access intimacy. This dance made me believe that access intimacy is not just understanding someone’s physical needs, but an understanding of how one’s developmental disability might make it harder to learn and follow social norms. Mia Mingus writes: “Access intimacy is that elusive, hard to describe feeling when someone else “gets” your access needs. The kind of eerie comfort that your disabled self feels with someone on a purely access level. Sometimes it can happen with complete strangers, disabled or not, or sometimes it can be built over years. It could also be the way your body relaxes and opens up with someone when all your access needs are being met.”
As a non-disabled caregiver, I don’t believe this is a word I can claim. I also have no way of knowing if all of - or even any of - Aiden’s access needs are being met. But the idea of an “eerie comfort” that my caregiving self feels in some spaces, the way I relax when I realize I can really concentrate on my work with Aiden without worrying about how he is perceived by others, resonates with me. I feel this in other spaces with Aiden, when folks don’t stare or don’t care about what Aiden’s doing. I do not feel this sense when people yell at him for breaking a social rule he doesn’t understand. I do not feel this when I feel obligated to constantly apologize on his behalf, or feel like I’m supposed to take him out of the social space we’re in. A verbal or written invitation is not enough. For a real, authentic invitation to dance, one must include access intimacy: for all disabilities.
How can cultures that are intended to be inclusive still be exclusive? Disabilities are so variable that often, even spaces intended for people with disabilities can be exclusive. How do we address this?