DISABLED LIFE: UNDER THE MICROSOPE
Building the Hypothesis
When I am questioned about disabled life, people do not ask the important questions. Their background research is shoddy and assumptions sweeping. They do not ask: What is it like to be under the microscope each time you leave the house, with every tiny detail of your life examined and dissected, analyzed and interpreted? They don't question what it's like to have other's steal your voice and your agency when they study your body and its movement. They don't think about all of the damage scrutiny causes to the disabled.
Testing the Hypothesis
The damage sounds like this – an acquaintance says to another acquaintance with the same diagnosis as me, "You aren't as bad as Meghan at least." This conversation does not happen in my presence, which makes it worse. There's a unique pain in hearing another person's disability married to my own – her suffering devalued; mine exaggerated.
Another person says, "It's good you can still mostly walk." I suppose that what we do becomes who we are, and in this moment, I am a broken body that limps.
And yet another asks, "How long do you think you have to live?" MS does not impact life expectancy, unless I choose to pull the plug when the disease becomes intolerable – that is, as or more intolerable than the ableists around me.
Some comment on my gait like this: "Looking good!" While others disagree: "WOW, your legs are really awful today." Few people are gracious enough to ignore me these days.
My favorite is the person whose attempt at empathy goes like this: "If I lived in your body, I'd kill at least a bottle of wine each night." This I don't mind, because as a writing teacher, people often marvel at the fact that I'm not an alcoholic as a measure of my career choice. Why not add my body to the list of reasons to over-drink?
They judge, too.
They ask, "Does that brace on your leg really help you? Seems like you're still struggling."
And sometimes they play physician: "I guess there isn't another medication to help you, huh?" I haven't found a way to express the reality of treating progressive MS without seeming fatalistic, because the goal of any medication is not to improve my condition to "normal" but to slow – not stop – the progression. So yes, ableist bystander, I'm fucked. Now to answering your question about how long I think I have to live…
Others corner me in a public restroom and play to my history, as though I have forgotten what it is like to be able-bodied. They say, "I remember when you used to be able to go up the stairs two at time, and now..." A wave and shake of the head, a downward glance to my legs as though it's all my legs' fault. (Psst. It's the nervous system's fault.)
There's also the innocuous comments that are easier to forgive and simple to overlook. These are the ones that do not leave scars: You're so brave. You are such an inspiration. I could never do what you do. I shrug these off, because I have heard them so often and in so many venues that I'm immune to this brand of scrutiny with its pity and abject fear.
Analyzing the Data
All of these comments come together to prove that every move I make is watched closely, judged against how I moved last week or last year or against other people with the same disease. There is constant attention to the body, my ability but more to my inability. It is as though nothing else exists, as though that's all there is to me – my diagnosis, my not–the-same–as-the-able-bodied's body, my incapability. The comments come together in a way that burns – pure white rage rising up from the harsh light of the microscope's bulb.
It makes me conscious of every movement, who I move in front of. It means I get to events early and get seated before others can take out the microscope slide, flick on the illuminating light. It means that I wait until they leave before getting up, because that microscope still looms, its dials twisting for a closer view. It means I hide, avoid, dodge, and play the long game to avoid ableists, who feel they have the right to explore and exploit my suffering...comment on it, judge it, decide its worth, and how it lines up to the suffering of others.
It's not unlike a competition, where participants are ranked against an impossible ideal. In this case I am ranked first against the able-bodied person's abilities — a competition they will always win –-and then I am again ranked against myself to further call attention to everything I can no longer do. Competitions have a winner, but in disabled life, there is only constant observation, measuring up, and feeling weighted down.
For this reason, I feel as though I have to constantly defend myself and be on alert, have my guard up. I listen to punk rock before getting out of my car, steeling myself to face the scrutiny. Sometimes the music works to harden and protect me, but most times I come up short as though the microscope light is shining right through a clear glass version of me, exposing all the vulnerable bits I'd rather hide or disguise or ignore.
Susan Sontag wrote this in Regarding the Pain of Others: "To paraphrase several sages: Nobody can think and hit someone at the same time."
I don't know that I agree. Sometimes people don't understand that their words are also bombs...that as they think and judge and scrutinize, their conclusions are weapons. Empathy shouldn't be an experiment in observing someone else's suffering and lining it up against whatever loose measures the observer decides to utilize.
I am very open with the fact that I intend to die with dignity. When the disease becomes too much and the loss too great, I get to back out. Yet, my scrutinizers seem to think they should get representation in defining what is and is not a livable life. With their relentless running commentary, they are trying to exert power over my life and death, but their measurements are out of context and not to the correct scale. They misjudge my experience, and they assume my quality of life falters in the same rhythm that my body, my movement, my ability falters. As my body and ability decline, my sense of what's important and meaningful and worth living for grows in the same way that in some cases less light shone through a microscope slide makes the material more visible.
Susan Sontag also wrote this: "Wherever people feel safe…they will be indifferent." I am not indifferent, perhaps because I do not feel safe in the presence of those who observe the movements of my body as though I am an object, as though they have a right to comment. I am not a specimen to examine. I am definitely not a convenient point of comparison.
To answer the research question: Being under the microscope feels akin to blinding rage mixed with isolation and tampered only by a blanket of grief, placed like a slide cover to contain the mess.