Today is the last day of MS Awareness Week. Today at brunch with friends, I brought up MS more times than I needed to, I brought up MS every time it was tangentially relevant. Last week I had a scleversary party to ‘celebrate’ 5 years of MS and invited my entire MFA program. A few weeks ago in a poetry workshop, I wrote poems about MS when I could have written poems about other things. I read an MS poem out loud when I could have been quiet instead. I write posts on facebook about MS when I have other things to post about, other things to say. I turned in a poem about MS to another poetry workshop when I could have turned in any poem. Two days ago I had coffee with a former student and talked about MS and disability when we didn’t need to talk about those things. A week ago I tweeted during the debate between Clinton and Sanders, specifically making note of ableist rhetoric when it cropped up. Last week I brought a poem by another disabled writer in for a class discussion when I could have brought anything, by anyone. These were all conscious choices on my part.
Can I say that I find all of this exhausting? Can I say that I am exhausted?
I am currently making an effort to be a part of the disability visibility movement. I like the personal nature of visibility, I like the idea of putting my disability in people’s faces when they’d rather not see it. I like the idea of putting a cute selfie on Instagram and captioning it with what’s actually happening in my life instead of with emojis. I think it’s cool when then those posts get more likes, when people pay attention because I’ve given meaning to actions, to pictures. But I am tired.
I’ve talked about this before (when I was 19, less eloquent, and more full of feelings, but whatever), but I don’t like the idea of awareness. Awareness is neutral. I am aware of so many things without caring about them. I don’t know that there’s much difference between visibility and awareness on a practical level, if a reader would have a different emotional reaction to “MS awareness” than they would to “disability visibility.” I don’t know if my own affinity with the language of visibility is in part due to my discomfort with the wider MS community, with their orange ribbons and bike-a-thons and the way they share years-old news articles about medications in facebook groups. The way they share their marriages in MS facebook groups as miracle news, the way it seems like they don’t expect to be loved. I don’t know if it is fair for me to talk about those things. If the issue is that the wider disability community seems “cooler” to me somehow, if that perceived “coolness” has more to do with the neurodegeneration and low-information status of other MS patients than with any actual flaws in their terminology. I don’t know how to do this, how to critique without punching down.
And I think a lot about how being visible is for me a choice, and for many others a given. How doctors often comment on how healthy I look. How friends comment on how healthy I look. How even strangers comment on how healthy I look. How my cute selfies on Instagram could be captioned with anything I would like to type with my mostly-functional hands because my disability is invisible unless I choose visibility. How I smile at strangers with visible disabilities and then hate myself and then forgive myself and then unforgive myself because if I cannot make my actions meaningful, if I cannot make my smile meaningful, if I cannot say “me too” in the moment, I look like just another able-bodied stranger thinking well how lovely that you’ve made it to the grocery store in your wheelchair, and I know that if I were that person, my response would be fuck you. And how do I give meaning to actions without being intrusive? How do I navigate invisibility? How do I justify saying “disability visibility” on Instagram when it’s just a picture of a young woman in a sweater who’s rocking really decent eyeliner, it’s just privilege, it’s just barely counting. How do I?
Today is the last day of MS Awareness Week but I will keep having MS after today. So will a lot of people, more than 400,000 in the US alone. Today is the last day of MS Awareness Week but I would like to continue to be visible, to speak up even though it is exhausting, to navigate even as I learn how to. To pay attention to others’ disabilities and to act in ethical ways. To learn to practice radical accessibility. To not shut up about ableist language, to police my own ableist language when I slip up. To think critically. To revise any of this when I need to, to practice self care. To keep talking, mostly. Mostly that.