Those of you who are unfamiliar with my other writing space, may not be familiar with some of my personal experiences with chronic illness and disability. I’ve been thinking a lot this week about the intersections of marginalization that people of color and the disabled experience. I encourage you to follow the Twitter conversation #disabilitysolidarity. It’s making me reflect a lot on my own experiences of disability, even as a white woman.
This week has been particularly difficult as I’ve been watching the discussion around Brittany Maynard’s planned suicide. It’s overwhelming. I’ve read articulate well people defending her “right to die” and sick people begging her to live. Nothing I’ve read really touches how I feel about life, illness, death, and it’s incredibly frustrating for me. I recently had a Facebook conversation that went like this:
Person: I saw my relative lose all her physical and mental faculties to the point she needed constant care. It was awful. She lost all dignity.
Me: I’m sorry you both went through that. We don’t lose value or dignity because we’re disabled. It’s up to her community to affirm her dignity.
Friend who gets me: Maybe disability is “undignified” because we stigmatize it.
What I rarely see in these conversations about life/death health/disease is any questioning of the ableist assumptions around assisted suicide. Most of us banter over what is untenable, what’s bearable, or which choice is “braver.” I have no interest in those discussions. I live in these tensions.
You see, my lived experience as a disabled person in an able-organized world tells me that I’m not disabled enough for some people (at least you can walk). For others, I’m heroically so (you’re so brave). For some, my struggle is a lack of faith (ask and be healed). For others, my struggles are the picture of sainthood (to go through life in pain and still believe God is good, wow). I’m consistently reduced to a trope and forbidden the freedom to live with disability on my terms.
I’m allowed to have problems, but not too many problems. Complaints, but not enough to bring people down. Limitations, but I must compensate for that with an overcoming spirit, like those triumphant stories we disabled people half-jokingly call, “inspiration porn.”
I am called upon to find a way to fit, to adapt. We even have adaptive devices. We are the exception, not the rule. We are the “abnormal,” the “atypical.” We carve out own spaces and hope to God we don’t get pushed out of them, because heaven forbid, the world bend itself toward what we need to thrive.
I watch portrayals of disability in films like Million Dollar Baby, heralded by Hollywood as courageous storytelling, and I wonder: why is the human condition consistently defined by an understanding of “health” that is so narrow, so elusive, that it’s not worth living disabled?
I read popular articles by writers who want to die before they get too broken, before they’re no longer useful or capable, and in my low moments, all this makes me wonder if I’ve overstayed my welcome: if my cost-benefit analysis tips too far and I’ve become a liability. It’s hard to shake that off and believe I matter when everything else around me shows contempt for the kind of life I’m leading.
What keeps me going on weeks like this are the people willing to fight. I’m talking about the people who contend with disease within and then find some way, in their measures weakness and strength, contend with the social ills that keep us pushing the disabled to the margins. These people are fully human: serious, funny, flawed, tired, persistent.
They insist that their world adapt, instead of placing the burden of adaptation on people who are already suffering.
They don’t settle for easy answers, but press in and ask questions about who gets included in these conversations. They interrogate powers and demand answers about who gets to decide who is well and whose not, whose lives are “quality” and whose aren’t.
We need to begin questioning our assumptions about dignity, worth, suffering, ability, and start asking the people who live this way what they would have us do. When we push people to the margin, they become more easily disposed of, but I’m not going quietly, friends. I’m physically disabled. I’m not your hero. But, I’m not your worst-case scenario, either.
**Bonus: here’s a really great, but NSFW clip on this from My Gimpy Life. The web series itself if funny and clever.