Just a few days ago, I wrote a post about what a blessed relief it is have my cane as a visible marker of disability. After living my whole life with invisible disabilities, I am enjoying the fact that my subjective experience and my outward appearance are in greater harmony. As a highly visual person in a highly visual culture, I’ve found it wearying to navigate the ambiguity of being disabled but not looking disabled. The burden that has been lifted by using a cane has been immense.
One of the benefits of the visible marker is that my disability is right up front. People can either welcome me in or treat me as Other, but I know right away which one it will be. In the past, because I’ve tended to present as “normal” at first meeting, the pattern has been that people had an expectation of my normalcy, then they’d get to know me, then they’d see how atypical I really am, then they’d feel somehow defrauded (I knew you were different, but I didn’t know you were that different!), and then they’d walk away. I can’t tell you how many people over the years have gotten pissed off to my face because I didn’t fulfill their projected image of normalcy. It’s good to have a break from that.
But today, I had an experience of the other side of visible disability: the part where well-meaning people ask about your disability and try to help you not be disabled anymore. I had an interaction this morning that woke me up to how subtly it can happen and how quickly I have to be able to meet it and deflect it.
It’s foggy and cool outside today, and I love walking in this kind of weather, so I got up and out of the apartment early. After I’d run a couple of errands, I saw a guy about my age on the street asking for money. I stopped a minute to give him a couple of dollars. He had grey dredlocks and called himself “an old yogi.” He was very gentle in his manner.
I am always very cognizant of the dynamics of helping people on the street: the class difference, the fact that people are in an extremely vulnerable position, and the fear that they carry of not knowing how someone is going to react to them. So I come from a place of wanting to give respect in equal measure with food or money or clothing, because I figure that respect is in as short a supply as cash. But of course, the class and power divisions are still there, and today, they came back at me through my disability.
As soon as I stopped to give the old yogi money, he began to question me about my cane. The opening salvo was to ask whether I was using it as a temporary measure. The implied question was whether or not I am permanently disabled. I didn’t know how to answer that question, because I don’t know whether the problem with my hip will get better. So I told him that something was going on with my hip and that I wasn’t sure what it was.
All of you with visible disabilities are likely cringing at this point, because you know exactly what’s coming and can see very clearly where I stepped into the big bear trap: a perfect stranger was asking about my body, and I gave him information. I’m not exactly sure why I did. Part of it was that he seemed to be expressing concern and I felt appreciation for it; part of it was that it simply took me by surprise; part of it was that I have this impulse toward truth and accuracy and sometimes don’t keep my truth and accuracy to myself. In this case, in order to protect the boundaries around my own body and psyche, I should have simply said, “I’m not available to talk about my disability.”
But I didn’t. I just didn’t see what was coming until he said, “I was on a cane for awhile.” That’s when I thought, “Uh oh. Here comes the testimonial.” He proceeded to tell me how he did yoga and got off the cane, how the cane was a crutch that keeps your body from getting better, how a cane can become addictive, and how I should spend some money on some yoga classes and see whether I could clear up the problem myself. In other words, using a cane was a Bad Thing, and having a problem with my hip was a Bad Thing, and of course, I wanted advice on how to evade the Bad Thing.
I was really shaken by this interaction. On the one hand, I understand where the guy was coming from. The class division was there and it was complicated by gender: a man was asking for money from a woman. There was a power struggle of sorts, a struggle in which my disability became my point of vulnerability, despite — or perhaps because of — my class privilege. And there was also an emotional struggle, in which the old yogi wanted to feel the dignity of giving back, as a man and as someone in poverty. He didn’t just want to take. He wanted to help me, too. I saw all of that happen, and it’s difficult to feel angry about it, because at the end of the day, he’s still sitting on the street asking for money and I’m in my apartment with plenty of food and safety.
On the other hand: boundaries. In this case, there are two sets of boundaries that got broken. One set consists of the boundaries that ought to keep a man from asking about a woman’s body without knowing her well enough to make the asking appropriate. The other set consists of the boundaries that ought to keep a nondisabled person from asking about a disabled person’s body and offering advice. Leaving aside the gender issue, the message that I got was that the questions and advice about my disability were welcome.
That’s the part that really got me. There was absolutely no consciousness in the interaction that I might love my cane and that its being a crutch is a Good Thing. There is nothing wrong with a crutch if your leg feels unstable and you’d like to go for long walks anyway. There is nothing wrong with a crutch if it keeps you from falling down. There is nothing wrong with a crutch if it communicates that your body works differently from other bodies and that’s okay.
And of course, the questions were all about disability as a purely medical condition. There was no place in the interaction for disability as a social identity, as a source of pride, as something to make visible because it’s part of who you are. I was caught in the same place in which I’ve always been caught as a woman: If you don’t want the attention, why carry yourself with so much pride in your body? Why be so visible? Why ask for it?
And the answer is exactly the same: Being visible is not an invitation to intrusion. A woman who walks down the street in a bikini isn’t asking for leering commentary any more than a disabled person with a cane is asking for help and advice from a stranger. My body is not public property, not an opportunity for personal conversation, not a canvas upon which other people can paint their fears and power needs and good intentions.
Despite today’s interaction, I am not going to hide. In fact, I just purchased a bright red cane to go with my bright red sneakers. For the first time in my life, I want to stand out. For the first time in my life, I know that standing out doesn’t mean I’m asking for intrusion. It just means that I’m taking up my place on the earth just like everyone else.
So please remember: When I stand out, it doesn’t mean I’m asking for your opinion, your commentary, or your help. It means that I’m asking for your respect.
© 2013 by Rachel Cohen-Rottenberg