Disability and Representation

Changing the Cultural Conversation

Making the Invisible Visible: It’s All Right to Stare

In the past few weeks, I’ve been walking with a cane. After about three weeks of painful back spasms in April, everything has calmed down except for my right hip. I’m not in any pain, but my hip aches on and off, and there are times that my right leg feels very unstable. So, instead of walking around gingerly and being fearful of falling, I use a shiny black cane for extra support. The impact on my confidence, my energy level, and my ability to navigate has been immeasurable. I’m taking long walks again, I walk much more energetically, and I come home far less tired than before.

And there is an added bonus: I am relieved beyond words to have a visible marker of disability. There is something that feels seamless about my life now. For my invisible disabilities, I have a series of invisible canes; strategies, adaptations, and self-talk that I use to give myself extra support and confidence in a world that is not made for my body. But no one sees them. Now the cane is on the outside, and I have a visible indicator of what I’ve been doing all my life. Despite the aches and the fact that walking is harder work these days, the visible indicator is a blessed relief.

In the light of all this, I’ve been watching the ways in which I’m interacting with people, and there are some interesting differences. In the past, I’d see a person using a wheelchair and I’d want to somehow communicate that I’m disabled as well, but really, what am I supposed to say? Hi, I’m Rachel and I’m disabled? People just want to get on with their shopping, you know?  But now, I notice that I can sink into those interactions in way I couldn’t before. There is a marker that says we share something in common. Not everything. But something. No words are needed. For a moment, there is a glance of recognition, and if you have invisible disabilities, that recognition is a significant experience.

And then there are the stares from nondisabled folk. Oddly enough, I’m getting past my natural shyness. Today I was out walking by the ocean, and a little girl, about ten years old, came by on the back of a tandem bike with her dad. As they passed me on the sidewalk, she turned all the way around to stare — first at me, then at my cane, then at me again, with a look of perplexity verging almost on alarm, as though my cane were a bit scary. I generally don’t like people staring at me; in the past, my response has almost always been defensiveness.

Today, I watched that defensiveness come over me for a moment and then I thought, “No. This is a opportunity to break down this barrier.” So I smiled and waved.

The effect was immediate. Her face completely relaxed and she waved back. And then even after she’d turned around, she kept her arm out to the side and kept on waving at me.

It was a lovely moment to step into.

And then, I was walking back to our apartment, thinking about this interaction, when I saw another little girl of about ten. As the girl and her family were walking down the street, a woman using a wheelchair came toward them and then turned right to go down the sidewalk to Walgreen’s. The little girl craned her neck to watch the woman and her wheelchair roll down the sidewalk. I thought to myself, “How odd! Another little girl staring.” What I didn’t notice until I got closer that the little girl’s legs were bowed and she was walking with a great deal of effort. So what at first glance had looked like a stare of an able-bodied child was the stare of a disabled child watching a disabled adult just go about her life and get things done. There was something lovely about that, too.

For me, at least as far as children are concerned, it’s all right to stare. I’m not sure how I’d feel if I saw adults staring at me, but kids have a natural curiosity and it doesn’t offend me. Of course, I’m new to all of this, and in six months, I might feel differently. But at this point, I’m looking for a bright red cane to go with my bright red Converse High-Tops. I might even find myself a red beret or put red highlights in my hair.

Because I want to make visible what has been invisible all my life. And for now, if people stare, it’s worth it.

© 2013 by Rachel Cohen-Rottenberg


    13 comments already | Leave your own comment

  1. 6/22/2013 | 9:02 pm Permalink

    I have fibromyalgia, which is an invisible illness. There are times when I need a cane to walk. During these times, it is a relief to know that there is a signal to people that something is not right and that there is a reason I am walking sooooo slowly. It’s the times when I am caught out and about without my cane when the pain and fatigue hits me unexpectedly out of the blue (on what had heretofore been a good day) that I find myself embarrassed. The cane, as you also experience, is a relief.

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    • 6/23/2013 | 5:56 pm Permalink

      Alana, it seems that people need that visual signal, don’t they? It’s as though they need a little bit of advance warning that something different is going on. I also wonder whether the visible indicator acts as a kind of proof-test to other people that we actually are disabled; words often don’t seem to have the same impact. I sometimes think that using a mobility aid is so potentially stigmatizing that the average person might be thinking, “That person wouldn’t be using that cane if it weren’t really necessary.”

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  2. 6/22/2013 | 11:10 pm Permalink

    I remember those looks when I first used a cane :-) It’s become more mixed when I use a wheelchair, but there are learning moments there as well!

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    • 6/23/2013 | 5:59 pm Permalink

      Casey, I was just thinking today that there is a kind of hierarchy of mobility aids. Most people are probably more comfortable with a person using a cane than a person using a wheelchair — partly because more people know someone who uses a cane (and so it feels more familiar), and partly because people who use a cane are still ambulating on two feet, which is highly prized.

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  3. 6/23/2013 | 5:57 am Permalink

    Love this article! There is definitely something powerful about crossing the borderline of visible/invisible disability. You’ve articulated something that I experienced in reverse a couple of years ago. I’m hard of hearing and wear a behind-the-ear hearing-aid, so it’s visible (though not always immediately so), and serves as a signal for what’s going on if I have trouble understanding someone. When I had a temporary bout with deafness, I wasn’t wearing the hearing-aid for a couple of months, and I found casual public interactions more confusing, mostly for others. At a time when I needed the visual cues & lipreading, my outer marker for that was missing, so people didn’t know how to respond. My speech is clear, with minimal “deaf accent” so store clerks, receptionists, and random people in public wouldn’t pick up on my hearing loss immediately, and I found myself saying, “excuse me, I’m deaf, can you face me when you talk?” all the time. So I was forced into explicit self-disclosure by the absence of a marker.

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    • 6/23/2013 | 6:07 pm Permalink

      Jenni, I read about a similar type of situation in Tobin Siebers’ Disability Theory, in which he talks about a Deaf man who was hit on the shoulder and hassled by a guard at the Metropolitan Museum of Art for not responding the first time to a request to not sit on the floor. He said that in order to signal that he is Deaf, he was considering getting a red hearing aid. He didn’t need it to hear; he needed it to signal that he *couldn’t* hear.

      I have sometimes thought about getting a hearing aid to signal that I have an audiological condition. A hearing aid would actually be the last thing I need — my hearing is almost completely unfiltered and doesn’t need to be amplified — but it would let people know “hearing problem here.” It’s felt somewhat appropriative to do that — after all, I’m not HoH — but I’m rethinking that now. I *do* have a hearing problem, and there is no other marker for it. And certainly, if I used a hearing aid, I would turn it all the way down — or off.

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  4. 6/23/2013 | 9:57 am Permalink

    Thank you for writing this, Rachel. I’ve noticed the same phenomenon many times. My only disability (at the moment) is autism, and all the sensory processing, klutziness, etc. that goes along with it. But that means I have spent cumulative more than a full year on crutches in my life at this point, from various breaks and sprains, usually acquired when walking off of curbs or tripping over my own feet. And I notice that people’s perceptions of my “other” change when something is visible. Especially a temporary visible disability masks my autism, and people treat me with respect and as a whole person in ways they don’t when I have two good feet. And it’s very strange. I used to have an obsession with visible disabilities, just for that reason. Because if I had a visible disability, people would treat me better. It’s strange in a way, but I just wanted to say how much this post resonated with me.

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    • 6/23/2013 | 6:16 pm Permalink

      E, I so much relate to what you’re saying about feeling much more accepted with a visible marker of disability. I think it has to do with the phenomenon that you describe so well on your blog — the way that, because we have invisible disabilities, people first see us as normal, then see us as different, and then decide we’re too different to deal with. The visible marker in some way relaxes me about being different because it’s letting people know up front what to expect, and they can avoid me up front or not. Whether they see me as “You’re different and interesting” or “You’re different and Other,” it’s a much more straightforward interaction. Either way, I am much freer to be myself.

      That’s produced a certain comfort about being myself that is quite different from my usual struggle about how to present myself, and I think that has a lot to do with the ease of some of these interactions. I’m not caught in the weird ambiguity of “I’m disabled, but it’s invisible, until you start talking to me for awhile, in which case you notice something different, and then you start noticing that I’m *really* different, and then you decide that I’ve somehow defrauded you because my disbility is invisible and you never would have started the interaction in the first place if you’d known.” There is no ambiguity, no sense of “What? I thought you were normal!” followed by pulling away. If people are going to pull away, they avoid me up front, which I much, much prefer to stepping into situations in which I’m waiting for the other shoe to drop.

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  5. 6/24/2013 | 10:27 am Permalink

    I agree. It is okay to stare. Most staring is really just about curiosity not judgement or criticism. My daughter (who has autism) stares A LOT. I think staring may be part of the way to acceptance. First there has to be some curiosity, some questions answered, some observation, then some understanding and then acceptance. To expect others to accept, but don’t look too much seems unreasonable.

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    • 6/24/2013 | 1:30 pm Permalink

      Hi Nancy,

      Like your daughter, I am somewhat prone to staring, which may be one of the reasons that I feel more comfortable with others doing it in my direction. I don’t at all mean to stare, but I end up doing it because I’m trying to understand things about “normal” culture that feel quite “abnormal” to me. Plus, I don’t read body language or subtle facial expressions intuitively, so I often look at people a little longer than “normal” while I’m processing the whole thing. I’ve done that all my life; I will study people’s faces and figure out where they’re at, but it’s not just a passing glance, and it sometimes calls people up short. For instance, a few weeks back my husband and a friend and I were all talking, and I saw a nonverbal facial expression pass between my husband and my friend, so I stood there looking at my friend’s face for a moment while I analyzed it. My friend looked at me and said, “What?” I said, “Oh, sorry, I didn’t mean to stare. I just have to analyze nonverbals and that takes a little while.” As the mom of an autistic kid, she got it and it was no problem.

      So at this point, I’m taking staring as an opportunity for contact. It’s amazing to feel oneself objectified by a stare and then step out of it and become a subject for the other person. For me, the problem isn’t so much people staring as the way that some people refuse to stop staring when asked. I have friends who will ask people to stop staring and they don’t. I haven’t had that experience yet, but I can imagine how annoying it is. I understand that some people can’t help but stare, and if there is a good physical or cognitive reason for it and they have a hard time stopping, it wouldn’t bother me. But if they can stop and just plain won’t when asked to — that’s rude.

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  6. 7/3/2013 | 8:26 am Permalink

    Thank you for writing this; I felt a wave of recognition at your second paragraph. Living with an undiagnosed sort-of-like-fibromyalgia chronic pain condition for the last seven years, there have been only brief moments, like this one, where I’ve acknowledged to myself the weight that I carry because of this disability being invisible. In a way I’ve lacked the language for it, which is why I so appreciate hearing you voice it.

    I am frequently performing, for brief windows of time, the performance of able-bodied. Yet this makes me feel even less understood when I don’t conform to that performance. People don’t know, for example, that when I’m lying down in some public place, it’s not just because I’m lazy/weird, but actually because I physically can’t bear to sit or stand at that time. On the whole I look so damn normal, so I guess the alienation comes in because I look like everyone else but my internal reality of pain/avoiding pain is so constant, that I’m not really living in the same narrative as anyone else whenever movement is involved. That said, it is much easier in my small town where people know me and understand my needs – i.e. at our local organic shop they take out a stool for me to rest on at the counter while they ring up my groceries. Something so tiny that makes a world of difference to my morale.

    I guess the stress on this is compounded by my feelings of being judged. I think most people wouldn’t realize how much our society polices physical conformity in terms of how we conduct our bodies – until you have the experience of not being able to conform. Sometimes I receive judgmental comments from acquaintances (and even friends! grr) who wonder why I’m not jumping up to help out with things that are easy for everyone else; sometimes these are voiced and other times I just feel it in the way the person treats me. Other times it’s jokes about how I’m always lying down (whoops! would you say to someone in a wheelchair, ‘haha, you sure are in that wheelchair a lot, that must be nice.’) Other times it’s from people who don’t know what’s going on with me; like being nearly kicked out of a music venue by a very intimidating and hostile bouncer when I was lying down in the aisle, because there was nowhere else to be and I had gotten into too much pain to stand or sit. If I had, say, a wheelchair, I think I would have been treated much more honorably there. Surprisingly, once when I tried using a wheelchair for a day to go to an event that would have entailed too much walking, I felt an odd relief: I was *seen*, people were compassionate, they wanted to help me, open doors, etc. Suddenly the world no longer felt populated by people who don’t understand/aren’t helping, because now they had put me mentally in their “disabled” category. It was oddly liberating. (Still, I was also quite conscious that I was being seen and treated as an “other”.)

    Yikes this turned into quite the diatribe!
    Mostly I just wanted to thank you for helping me visible-ize my own experience to myself, and to say that I hear you loud and clear. I would love to get myself beyond complaining to a more constructive way of being with all this. But at least getting clear about the dynamics feels like a start.

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  7. 7/11/2013 | 5:29 pm Permalink

    I use a cane off and on too, and I’ve had the same experiences. One of my favorites was when I was leaving brunch at a restaurant, and this little four-year-old girl was just STARING with wide eyes, and called out, “Why you need that?”

    You could just see the gears turning in her head: this was something grandma uses, not young women her mother’s age. Why did this grown-up need a cane?

    So I told her, sometimes I get REALLY dizzy, and the cane helps me keep from falling down. And she just nodded.

    Also, I’m a big fan of the stylish canes. I have a rose-print, a copper marble one, and a black one with tree frogs. I DON’T have any that are “plain.” :)

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