Spurred partly by my recent scary health experiences, and partly by posts from Julie at Alas and Daisy at Daisy's Dead Air, I've been thinking about the peculiarities of invisible disability.
About a week into my bizarro neurological adventures, I started to go public with my colleagues and a few students. I realized I wasn't going to be healthy again overnight. It became obvious that I might need some extra support - which I got in abundance.
The first group of colleagues I told were shocked. "But you looked like nothing had changed!" "Nobody could tell that there was anything wrong!" "Really, your lecture was just fine!"
What shocked me, upon reflection, is how gratified I felt to hear this. I had a mild tremor in my lower left lip, and I was convinced I must look like Inspector Dreyfus from the Pink Panther movies. My facial muscles were freakishly tight and I was sure my face resembled a death mask. Brain fog interrupted my ability to string together sentences, and I perceived my own lectures as rank gibberish.
I suppose it's understandable that I was glad to hear that none of this was evident to an outside observer. And yet, I think my reaction also betrays an investment in "normalcy" that I really ought to have shed by now. I've been teaching about disability in women's studies classes for years. My partner has a somewhat visible physical disability. While in grad school, I experienced another invisible, ultimately temporary, but fairly long-lasting disability when I was diagnosed with chronic fatigue syndrome.
What does it take for a gal to get over the ideal of normalcy? Why was passing so important to me?
There's a serious privilege built into invisible disability. While I'm still pretty far from normal (my hand tremor is acting up as I type this), I can choose whether to disclose it to people. I don't have to respond to questions from strangers about what happened to me - something that happened to my partner all the time when he was wearing an arm brace. It's as though any piece of orthopedic equipment makes your body and its history public property. I'm very relieved not to have to defend my personal space and privacy.
Faced with wearing a wrist brace that might help her heal but would call attention to her disability, Daisy explains why she can't quite make herself do it.
It makes me appear vulnerable and calls attention to my age, in a job market in which older workers are getting left behind. I try to look energetic and "happy" on my job, since we are "selling a lifestyle" and all that shit: I feel pressure in the health supplement industry to always appear healthy. Since it's a job in which people are always talking about their health, I am duly questioned about mine, when there are many times (like now) that I'd rather not answer. The overall sentiment seems to be: well, if you know so much about supplements, why are you falling apart? Aging is inevitable and people are in denial about that, as well as in denial about disability-as-part-of-life in general...I'm not in the health industry, but in my work I'm surrounded by apparently-healthy young people. As their instructor, I often hear about what lies beneath. One person has ADHD, another is coping with rheumatoid arthritis, yet another has Crohn's disease, someone else comes down with mono, and a legion of them struggle with various mental health issues. Yet the norm on campus is what's visible. And all you can see - except for the occasional leg cast - is "healthy," vigorous youth. It's possible this is more pronounced at my university than most, because the campus is hilly and the accommodations for anyone who's mobility-impaired are a joke.
This silence and invisibility contribute to the denial Daisy mentions. So does our shared but repressed fear of mortality and decline.
There are also serious perils in looking "too healthy." Julie at Alas recounts how she can't wrap her own mind around the idea that her back pain is real, and this sabotages her ability to get the care she needs. Daisy points out that Julie's experience collides our expectation that if a person is young, attractive, middle-class, and educated, she ought to be healthy, too, just by definition.
Maybe most people with invisible disabilities aren't as hard on themselves as Julie appears to be, but they also can't always count on the recognition and help they need. When I had my chronic fatigue experience, my grad school advisers were wonderfully supportive, but some of the other people in my orbit really didn't get it. My then-boyfriend once accused me of using my illness manipulatively because I could find energy for some activities but not others. It was hard for him to understand that my energy level varied, and that I had to set priorities. (This was the beginning of the end for me and him.) A few fellow students expressed skepticism behind my back, which came back to me through the grad-school gossip tree: How could I really be sick? I didn't look sick! Was I just trying to get a break on my coursework? To my face, though, some of my comrades radiated pity; this group overlapped with the skeptics, weirdly enough.
This time around, I've encountered only warmth and support from family, friends, and colleagues. My husband took on some of my usual household tasks. My mom sent money and offered to come help if we needed her. Friends took care of the kids, often at short notice, and one of them babysat overnight so we could go to Cleveland. One colleague gave a lecture while I was away, and another was on call to cover my seminar. Yet another found money to pay a grader so I didn't have to deal with 90 midterms.
I'm sure it helps that I'm out of the grad-school hothouse with its petty resentments. More importantly, most of the adults in my life are now old enough to have some close-up experience with disability. Without their support, I don't know how I'd have made it through the past weeks.
But the precondition for all this help was that I had to make the invisible visible. I had to take the risk of making it public. I couldn't hide under the mask of normalcy. I had to give up the privilege of passing, however uncomfortable that made me. I'm so grateful that the people in my life all chose to make that radical phenomenological leap of faith - to believe in the reality of my reality, no matter how impossible it was for them to see it.
What would it take to transform our society so that invisible disability is always taken seriously - and that leap of faith is no longer even necessary?