Disability and Representation

Changing the Cultural Conversation

My Body is Not Public Property: The Disability Version

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

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  1. 6/25/2013 | 1:04 pm Permalink

    “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.”

    great article, on all points.

    the other aspect is one of charity– who gets to give it and who gets to receive it. it is an affront to receive charity from a person with a dis-ability, especially a woman with a dis-ability. it’s an affront for pwds (people w dis-abilities) to have any agency, place, space, acumen, authority, leadership, skill or information.

    pwods (people w/o a dis-ability), feel entitled to do for us, not with us, and certainly not from us.that is the hierarchy.

    in giving you advice, he was putting you in your place. it was an offense that you had a resource for HIM, and he was establishing himself in the supremacy hierarchy.

    • 6/27/2013 | 12:40 pm Permalink

      Emma, interesting take. In this case, there might have been an element of putting me in my place, albeit unconscious. I saw the man as trying to get out of his place of having to ask for money at all, and he did it by using my cane as an escape route, thereby giving himself more power. In general, though, I find that being visibly disabled tends to put people on the street more at ease with me rather than less. I think there is a vulnerability implied by the cane that makes people feel less worried about their own vulnerability when talking with me. Even without the cane, people intuitively know that they can trust me, so they don’t seem to feel fearful about approaching me, but the quality of most of the interactions seems somewhat different now, and in a good way.

  2. 6/25/2013 | 3:41 pm Permalink

    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.
    At which point I’d have said that yoga caused my injury. Yes, it’s lying, but it gets them off your back and prevents greater harm to your psyche.

    • 6/27/2013 | 12:33 pm Permalink

      I don’t know. He might have told me I was doing the yoga wrong and needed to find another teacher, which would get us back into the same conversation!

  3. 6/25/2013 | 5:16 pm Permalink

    I appreciate your parallel of the boundaries we wish to maintain as women and as people with visible disabilities.

    Even the folks who disagree with us now recognize what a “sex object” is: the assumption that our genitals are worth more than any other part of us, and the highest best use of our bodies is prone.

    I’m thinking we need to establish a similarly well-understood critique of the “help object”: that people with disabilities don’t exist to be helped, we don’t need to be interrogated about our help requirements, we can even provide help in many cases (as you did today).

    • 6/27/2013 | 12:32 pm Permalink

      Jesse, I love the idea of critiquing the ways in which nondisabled people see disabled people as “help objects.” The whole notion of a “help object” really speaks to what is going on.

  4. 6/27/2013 | 8:14 am Permalink

    Being a woman is an invitation to intrusion. Period. Especially with other women, in my experience. The minute anyone knows you are experiencing anything that is perceived as novel/different/difficult/ it’s an open invitation for comments/suggestions/advice/stories.

    I wanted to leave a comment here yesterday but I didn’t want to seem argumentative or insensitive. I respect whatever reasons others have for their feelings. It’s fine.

    I have to remind myself that most people are well intentioned. Here’s a real life example: I am “poor” by American standards. Some years ago, I decided to get a cat. A woman I know, who is a bit younger than me, called me on the phone and asked me if I knew how much money it cost to keep a pet cat. She was concerned that I might not be able to afford it. That call, which I found infuriating and almost degrading (I mean, of course I know the ramifications of having a pet! I’m in my fifties!) was made out of concern for my welfare. Did I just say, “Thanks for telling me that!” No. I didn’t thank her. I somewhat impolitely chided her for thinking that having a cat wasn’t worth whatever expense it would incur and that she hadn’t thought I might have had a pet in the past/and/or thought it, through (etc. etc.) . . .

    This woman, like many women I know, chronically “mother” other women. It’s an offering. Misplaced, perhaps. I believe that the man you gave money to wanted to give you something in return. Can you imagine being a homeless man? He can’t get into your head nor you into his (and I’m not alluding to anything “autistic” here).

    I used to use a cane myself. I was 18 when I used it. It was necessary. It actually did make my hip problem worse after about a year. Will this be your experience? I have no idea. I might, in conversation, tell you about my experience because I’d think it could be helpful to you. You might not want to hear it. Or you might.

    Another example: I had some surgery that turned out to be unnecessary. In this case, it was considered impolite to talk about in public. No one said anything to me about it. When I found out that a few people I know had the same surgery at the same hospital and had similar experiences, I wished someone had said something to me. Maybe I would have been annoyed. I don’t know. Hindsight is 20/20.

    Maybe I’m not “getting” your post. It hit some nerve in me. In some cases, I know for sure that I’ve felt that people could actually help each other more if we were more open about our health issues. I know that what works/doesn’t work for me is totally different than for others, but what if it isn’t?

    These are questions of community and communication and I think they are huge. There’s no one right answer that fits all.

    I’m glad that you brought it up, though!

    • 6/27/2013 | 12:28 pm Permalink

      Jules, I think that we are very much in agreement on most points. My main source of upset in the interaction was that the concern came from a complete stranger. I have less of a problem with someone who is known to me giving me advice, because then, as unwelcome as the advice might be, it’s part of an ongoing relationship that we can work out. It might be annoying, but at least there is some intimacy already there that might lead a person to believe that the advice is welcome. In this case, there was no such intimacy, so it felt like more of a boundary violation than it would if it had come from, say, my husband or my kid. Plus, the people who know me well know to preface advice with a question like, “Could I give you some suggestions about…?” and they know that our personal contract always gives me the right to say no.

      When it comes down to it, I think it was the absence of a personal contract between myself and the old yogi that made talking about my body so uncomfortable. It was a really unbounded interaction to begin with — it took place on the street between two vulnerable strangers with all kinds of intersecting lines of privilege and oppression going on. I’m beginning to realize that the absence of a personal contract is what makes so many interactions between strangers problematic. You see it on the Internet all the time — people breaking one another’s boundaries because there is nothing in place to hold the interaction within agreed-upon parameters. The only agreement about boundaries seems to be that there is no agreement.

      One of the reasons that I left the interaction feeling upset rather than angry is that I saw that the old yogi really was trying to make an offering to me. That was very clear, and I really, really want to honor that. It’s critical that people who have next to nothing know that they have something to give; I think that there is a kind of despair in people who don’t feel that they can contribute, especially in a culture in which getting and spending are the primary ways in which people think they can make a contribution to the world. So I get that. It’s just that the route he took toward making an offering went straight through my body and all kinds of able-bodied and gender privilege. It’s worth looking at those things because they all work together to keep us stuck in place. Using one form of oppression to get out from under another form of oppression isn’t a long-term solution — though I can understand why it was a short-term solution for the old yogi, who clearly is laboring under greater burdens than I am.