Thursday, September 2, 2010

Resisting Isolation, Building Home.

For most of my life it has been easier to perform a survival able-bodied-friendly version of myself, rather than nurturing the harder to live disabled-self-loving version of who I ache, desire and need to be. Because it has often meant the difference between a-little-bit-more-connection and a-little-less-isolation. But what is the point of connection, if you still feel isolated and alienated from your self? And what is that connection built upon and from? How do I want to be connected? - Mia Mingus, "Wherever You Are Is Where I Want to Be: Crip Solidarity"

Ever since I read these words written my friend Mia on her blog, Leaving Evidence, a few months ago; I found that these words make me wrestle with myself, wrestle with internalized ableism. Way too often, I brush away the the part of my body, my being hard-of-hearing that demands my friends and family change their ways for me to be fully present with them. When I do this, the connection I have with them feels like it is built and contingent upon my internalized ableism and their able-bodied privilege. And I hate that. Because I want to be able to be whole with my friends, disabled and able-bodied, while at the same time being whole and connected to myself.

And I felt like I couldn't: that if I wanted to control the space so it was accessible to me, I had to be alone; and if I wanted to be with friends, then I had to just deal with the fact that the space is inaccessible. I felt like I would just have to hold all the ableism, internal and external, inside until I was forced to leave. And I would rarely mention a word about ableism; only say that there were too many people. Saying ableism or lack of access, or not being able to be whole or fully present was too hard. And it still is so fucking hard.

Keeping my lack of access in apolitical terms that don't imply power or privilege has been a way of mentioning there's an issue, but not telling the full truth. Because telling the full truth would mean telling them the ways that I struggle when I'm with them and the truth that I need them to help create access with me. So I tell them that it's too loud or that I need to take a walk or that I'm not feeling like being there and leaving without telling them why. Because I've told my parents what my needs are, repeatedly, and nothing has changed, so by the time I'm dealing with this with friends, I leave, feeling defeated before we begin struggling to create access together.

Last night, I was chatting with my friend Ryan Alley, and we were talking about the idea of creating our bodies and hearts as a home. He said:

"home happens in moments. there are moments when my body is home, moments when i feel home/belonging with other people. but it is a constant struggle, impossible to maintain that feeling of home. it is always moving, shifting."

So I need you to join me in struggling to find ways of interacting and connection that help us resist isolation, to find ways that dismantle the notion that any of our bodies are wrong, inferior, or broken. It is creating the space in which we can talk about what it feels like to be isolated, the pain of not having our access needs met, and defining what our access needs are in the situations we are in. It is holding each other and ourselves accountable for participating in systems of oppression. It is allowing each other to be the complex people we are and giving all of us space for self-care. It is dancing, story-telling, laughing, cooking and traveling with each other. It is being with each other in these ways that can help us create our bodies as home, even if only for a moment. In these moments, we can create relationships that begin to feel like home, like family, like liberation. And recapture it again and again as it shifts.

Check out Mia's blog, Leaving Evidence:


  1. John, thank you for saying these words "out loud". I am an accessibility advocate and realize that even though I care about equal access with all my actions may not always match my principles/beliefs. And I need people to help me see that, because at times, I might be blind to the irony of the situation. Or, shudder, I might just be being selfish, lazy or thoughtless. The only way we can continually help each other reach our full potential is by being loving and honest while creating positive environments for being authentic.

  2. so much love, darling. so, so much. The last paragraph especially gave me chills.