Wheel ::: On Sharing

Almost seven months ago my brain felt like it was exploding and I was ridiculously anxious and exhausted. So I made a mini-zine about it and posted it to facebook. I was grateful for (and bewildered by!) the amount of response, feedback, gratitude, and support it generated. Thanks to everyone who read that and supported me, and everyone who's supported me before and since.

Recently I got a great message from someone who asked me if I had always been so comfortable sharing about difficulty, which catalyzed a ton of thoughts for me – so many that I eventually felt an impulse to list, organize, expand on, and yea eventually share them with you in the form of this new zine! It's kind of an expansion to the first one, with more thoughts collected over the past few months of traveling and improvising in and out of my wheelchair. As I noted on the front, this zine is personal but not private – feel free to read, share, engage with, and use this in whatever way helps or interests you. For me, sharing this is partly a 'selfish' act – creating and understanding myself by exploring the conversations I have again and again, and also improving the ways I communicate about my thoughts and disability for the practical reason that it lets me move through the world a bit more easily. I also share this as an act of gratitude for the many people who've shared honestly and vulnerably with me, and in doing so, taught me how to be more of myself. If this makes some space for even one person to feel more real or less alone, that's totally worth it to me.

So sharing. About difficulty. I think I've always been drawn to deep / intense interpersonal connections, but that's taken many forms. I remember really seeking out 'real talk' conversations in adolescence, sometimes in strange ways – for example for a long time I took a lot of pride in being someone that others confided in while also taking great care not to expose too much of my own difficulty. Weird ego stuff, I don't know. I think a lot of it had to do with being the only disabled person in my family, friend-group, and immediate community (that I knew of – I'm sure there were other disabled people that I didn't recognize as such at the time) and organizing a lot of my identity around trying to “pass” as non-disabled. Passing is complicated and exhausting and sometimes super useful and weird and the world really rewards you for it even when it's hurting you... and there are a million more pages to write about it. But the point is, I was really ashamed and tried really mega hard to pass for a good part of my life until I literally broke under the weight of that charade. Senior year of college my body was in such rough shape and in so much pain from my neglecting it that I really had to ask myself who I thought I was and what the hell I thought I was doing. And what mattered to me. And how to create my life and self in such a way that could sustain all of that.

I feel like this is a good part in the story to briefly explain to readers who don't already know what was/is actually going on with my body, because people are curious about it and it's useful for me if people know about it (anyone who reads it here is one less person to worry about explaining it to). And I am happy to explain that, I'm (usually) not ashamed anymore and am fine with people knowing what my disability is. But I also want to point out how interesting it is that explanation feels mandatory. I was chatting with an artist-filmmaker friend about disclosure, and she finds it telling that so many bio - blurbs of disabled artists start out like: “haley brown is an american artist and improviser with osteogenesis imperfecta.” Why?

But yea, I do have “Brittle Bones,” or Osteogenesis Imperfecta, (type V). It's a rare genetic mutation that affects collagen production and makes my bones fragile, and I'm not that interested in telling you about the science of it. To be honest, I'm not that interested in the science of it. To be honest, the science of it stresses me the fuck out. But basically I'm great at breaking bones. Before I could walk I had mastered the art of a good, clean break – spent a lot of early childhood in pink casts with puff-painted dogs on them – and these days most of my breaks are much smaller fractures, mostly in my femurs. These aren't so bad except that they are hard to pin down (they don't show up on x-rays because of all the old cracks, and their symptoms can often be hard to separate from general chronic pain), and that my particular type of OI is characterized by 'callus' formation around fracture sites – meaning I have these painful little swells in my femurs that are super tricky to heal from. They look like woven cotton nests on my x-rays, which I find oddly charming. Anyway for much of 2012 – 2013 I was overcommitted and stressed and running around a ton and writing a thesis and not sleeping, so these fractures and calluses were in overdrive and I was kinda losing myself. So I tried using a wheelchair, and eventually realized that it needed to become a more permanent physical option for me if I wanted to stay active.

Getting back to the topic of sharing, occupying such a visible symbol of disability in using a wheelchair makes sharing feel like more of a necessity and less like a choice. The world is constantly asking me (directly or indirectly) “What's wrong with you?” “What happened to you?” “What do you need that for?” “How much can you walk?” and “Why do you use a wheelchair?”*.

Thankfully these days people I know are usually polite enough not to say 'what's wrong with you', but whether or not people say it I know this “what's different” question is in their minds. Especially because my ability to get up out of my chair and climb stairs or dance around or show up without my chair sometimes means I am not easily categorizable to a pre-existing “disabled person” template. And although the human tendency to put other humans into templates and organize them according to binaries is strong, I admit that's not the only thing happening. A lot of humans also just genuinely want to help out and do the right thing, and the fact that they don't know what's going on with me and where I fit into the templates stresses them out because they don't know how to respond. I realize that curiosity is not evil, and explaining difference is often the logical and helpful thing to do. In fact, I think that we need to get a lot better about discussing difference if we want to live in a more just and compassionate world. But if you're visibly disabled you'll know why this is so exhausting, even if it can also be good.

And if you're not, imagine for a second that your ordinary presence in public space – inhabiting the body that you've always had and simply using it in the ways that make sense for you – calls up all kinds of questions, insecurities, fears, guilt, curiosity, stories, doubt and uncertainty for the people around you. Disabled people are not the only ones who deal with this – people of color, queer and trans people, and so many others also have to navigate similar terrain because of the way their bodies are read by society. If you somehow can't imagine it just take my word for it that it's exhausting.

So yeah, I sometimes don't feel like I have a choice in sharing. And sure I could stop at the technical explanation, but that somehow feels not only incomplete, but... disempowering, in a way? When I stop at the technical explanation I feel like my disability gets represented as this scientific problem that's inconvenient and that makes me less instead of as a rich, interesting, complicated part of me that gives me more to think about and pushes me to be more of myself.

So although it can feel like I don't have a choice in sharing, choosing HOW I SHARE has become a MAJOR source of empowerment.

SO. hello, here I am. Improviser and teacher David Razowsky talks about the moment you come on stage as this precious moment of vulnerability and possibility, where you get to say hey, here I am. I don't know what it means yet. We'll figure that out together. But I am here. Here I am.

love,

haley

acknowledgements:

hm. I was going to try and list all the great buddies who in some way influenced this little piece, but there are so many of you and I think (I hope!) you know who you are. Thanks to all of you who I've had some version of this conversation with, thanks for the great questions and insights, thanks for sharing your experiences with me, thanks for noticing when I need a hug and offering. : )

* Also once “Are you using a wheelchair?” which I thought was hilarious. No, I am floating and gliding through campus in a seated position and the wheelchair is a construction of your imagination