Following is a guest post by my husband, Bob Rottenberg, about his experience of going through airport security with disabilities. Bob uses a knee brace and has some age-related hearing loss, with tinnitus in his right ear. He travels frequently between the coasts.
I’m traveling a lot these days, mostly flying to and from California to spend time with my very frail and very old father in New York City. On the average, I make the round trip once a month. This means going through airport security twice (coming and going) in the span of a week or so.
I’m almost 69, in good physical health overall, but there are two things that slow me down.
One is my hearing, which is still OK, but my right ear isn’t what it used to be, so I’m increasingly affected by background noise. The other is my right knee, which is ready to have some torn cartilage removed. As a result, when I travel I wear a fairly substantial brace on that knee. A brace that always sets off the body scanner alarms.
I’ve become both resigned to and accepting of the pat-down by the TSA screeners – knowing that the only thing they’ll find is a knee brace, which is not a problem for them.
Because I know that I have to go through this process, I try very hard to get to the airport with plenty of time to spare. This allows me to be as relaxed as possible in a very stressful environment. And it allows me to cooperate with the screeners, and let them know what’s going on for me.
Today, because the New York airport didn’t have the latest screening technology, I had to undergo a “full-body” pat-down. The agent started explaining what he was going to do, asking if I understood and assented. The problem was, even though I knew what he was going to do, I couldn’t really understand what he was saying, and didn’t want to simply nod in agreement. Part of it was my hearing, which is always compromised in a noisy environment. The other was the agent’s speech, which was both unclear, due to his accent, and coming at me at a very rapid pace. So I kept asking him to repeat what he had said, because I literally could not make sense of his words, and I didn’t want to get anything wrong, and risk setting off more alarm bells and having to sit on the Group W bench with the other hardened criminals – and, of course, risk missing my flight home.
At that point, a female agent came along and, perhaps realizing that I wasn’t understanding the first agent’s attempts at the King’s English, repeated everything he had said, but more clearly. The exam proceeded, took all of one minute, and I was cleared for takeoff.
So what did I learn from this? That it’s important for me to not apologize about my “condition;” that’s it’s OK to for me to slow things down, to make sure I understand everything that’s being asked of me, and to then do everything I can to make the job of the agents go more smoothly – all so that my day can proceed more smoothly.
And today, this worked. I refused to apologize for my condition – for my less-than-adequate hearing, and for my knee-in-need-of-surgery – but I was completely willing to let them know what I needed, in as non-confrontational manner as possible. This is who I am right now, and I accept my condition fully. But I also realized that I did not want to make my condition a “problem” for the agents. This is why I insisted on taking the small amount of extra time to make sure I heard and understood what their needs were. I’ve seen too many instances where the lack of clarity leads to unfortunate outcomes.
Not feeling rushed certainly helps me to take full responsibility for myself in these moments. I can imagine how I would feel if, under pressure to make that flight in the next ten minutes, I had to do combat with agents whose words I could not clearly understand. I take the approach that they are there to help me get to my destination safely. And my responsibility to them is to be as clear as I can about my own needs, so that we can both get on with our day in as pleasant a way as possible.
And this is what I learned: Just as they shouldn’t have to apologize for simply doing their jobs, I shouldn’t have to apologize for being who I am.
© 2013 by Rachel Cohen-Rottenberg
As many of you know, I have been working very hard at being a bitter crip. I critique the hell out of everything. I write about inspiration porn. I analyze media stories about disability. I complain loudly at the merest hint of ableist rhetoric. I even write about people giving me grief at the post office and in the check-out line.
And yet, until yesterday, I’d never been called a bitter crip. Not once. Not ever. After working so hard at it for so long, I’d just never received the recognition I craved. It was all a trial and a tribulation.
I was beginning to lose hope. After all, I’m 55 years old and I’ve been in a state of
entirely justifiable outrage deep and abiding bitterness for a long time. I thought, holy crap, if I haven’t made it to bitter crip status at this point, maybe I should just give it up and post cat videos.
But then I wrote a piece about a beer commercial and… Wow! You should see the comments I got! Some of them actually made it out of moderation and onto my blog. Others were in such thorough violation of my simple and intuitive “Don’t be nasty to the blogger” policy that I didn’t let them through. But still! I thought I’d reached the golden pinnacle of bitter cripdom when I received the following comment on Thursday:
“Jesus, you are a fucking miserable person. That was a nice ad with a nice message. I think you’ve expressed your own insecurities far more than you’ve expressed any flaws in the advertisement.”
Being called a “fucking miserable person” is pretty close to being called a bitter crip, but it’s not quite the same. In my desperation, I kept trying to make it the same, but who was I fooling? I felt like such a wannabe.
But then on Friday, I finally made it. I was so excited! Here is the comment that put me over the top:
“OMG!! Are you for real??? Bitter, at all??? This was an incredible commercial. No, ‘regular guys’ wouldn’t be so agile in using wheelchairs to play basketball, but the thought that they might attempt it so that their friend, who depends on a wheelchair can play a legitimate game of basketball with them is the message!!!!!!! You don’t get that???
You must live a very sad, sorry, pitiful life… wheelchair or no wheelchair…”
DINGDINGDINGDINGDING! Bonus points for gratuitous use of exclamation points and question marks!!!!!!
Gosh! It’s such a moment! And so unexpected! I hardly know what to say. I could never have gotten here on my own, that’s for sure. It takes a village to raise a bitter crip, and thanks are due all around.
Thank you to all of my fellow bitter crips for being such INSPIRING role models. OMG! There are too many of you to list here, but you know who you are!
Thank you to all of the people who have left nasty comments on my blogs over the years. You have kept hope alive that, one day, I might enter the ranks of bitter cripdom!
Thank you to all of the people who have told me, throughout the course of my life, that I should just be grateful and shut the fuck up and stop thinking about things so much. Without you, I’d never have dreamed this big!
And finally, to the lovely lady who called me a bitter crip: Thank you! This is a moment that I will cherish forever.
Let the celebration begin!
(You can find the lyrics here.)
© 2013 by Rachel Cohen-Rottenberg
As commenters on this blog, you are welcome to use whatever disability terminology you wish: disabled person, person with disabilities, differently abled, special needs, and so on. I prefer identity-first language (disabled person), but terminology is a matter of personal choice, and I follow a policy of non-interference in other people’s choices.
I don’t mind discussions about the relative merits of different terminologies, but they have to be in the proper context. On this blog, the proper context would be a post that focuses on terminology issues. In that context, everyone is welcome to weigh in. In any other context, I would consider raising the issue a derailment from the focus of the discussion.
No matter what the context, no one is welcome to advise, cajole, or pressure anyone else to use a different kind of terminology, and no one is welcome to tell people they’re doing it wrong. Please respect the ways in which other people wish to be addressed. So, for example, it’s out of line to respond to I’d prefer to be called a disabled person with You’ll always be a person first to me!
Seriously. Don’t do that.
Further, if a person has made a very clear request to be called by one term, and someone else insists on using another term to address that particular person, it is fine for the first person to restate the preference and ask that the other person abide by it.
The reason for all of this is simple: We are all fighting a hard battle. If the terminology that people have chosen helps them to move through the world feeling empowered and beautiful, I want people to feel that their choices are supported.
Not every use of a particular term needs to be an occasion for weighing in on your feelings about it. Please show respect for the choices of others, even if you disagree with them.
© 2013 by Rachel Cohen-Rottenberg
I rarely think about the issue of cure. Up until the last five years, I had unknowingly lived with disabilities before they were properly diagnosed, so these conditions have always been aspects of myself that I’ve taken for granted. Sure, there were a few (okay, several) mental health professionals along the way who mistook neurological issues for psychological ones and overprescribed for me accordingly. And sure, I worked uber-hard in psychotherapy to fix things that had no psychological basis at all. But really, beneath it all, my disabilities have always been knit into who I am, and at this late date, I don’t think much about changing them. I’ve lived with disability for over five decades and I’m very much used to it.
Every now and then, though, I find myself wishing for things to be other than they are. I’m not talking about wishing the world were different than it is; that’s pretty much a constant. But occasionally, I notice myself wanting my body to be different from what it is.
These thoughts have been emerging lately around my auditory processing issues, which have gotten more severe in the past few years. I recently went to see a speech-language pathologist, because I have difficulties with speaking and I wanted to find both a strategy for dealing with them and a language for describing them. As I spoke with the SLP, I began to realize that I had one very basic question: Do I have a primary problem with speech (that is, do I have a problem with the translation mechanism between my very clear thoughts and my challenges with speaking them in real time), or do my difficulties with speech derive from the fact that I spend an exhausting amount of time and energy parsing sound?
I really can’t exaggerate how tiring it is for me to hear. Despite age-related hearing loss, my hearing is still acute because it is almost entirely unfiltered. I have auditory delays that put me a few clicks behind in every conversation and rushing to catch up. Just going to the grocery store and chatting with people takes a lot of energy and concentration; I come out thinking, “All right! That was fun! Now I don’t want to talk to anyone for several hours because listening is too much work.”
You can probably tell why I was misdiagnosed with mental health issues. When you’ve never heard the term auditory processing disorder, and you sit in front of a therapist and say, “I don’t know why, but I just find it really tiring to listen to people and don’t want to spend a lot of time with them,” that therapist will generally think depression, social anxiety, and a whole laundry list of other psychological problems. But the fact is that I love and care about people immensely, and it frustrates me no end that I cannot sit and listen to them for as long as I’d like without my head buzzing. It’s especially frustrating when I spend so much energy processing sound that I have so little left for speech.
When I explained all of these things to the SLP, she said one of the most compassionate things that anyone has ever said to me: It’s so hard to not be able to communicate the way you want to.
Yes. Yes it is. It’s especially hard when you’ve got a mind that never stops working and a heart that wants to pour itself out in speech. At that moment, the feeling of wanting things to be different came up and grabbed me by the throat.
But my thoughts did not turn toward normalcy. I was not thinking, Yes, if only I could hear normally and speak normally. Not at all. My thoughts turned in the direction of disability: If only I were deaf and did not have to process sound at all. Then I would have plenty of energy for communication.
After 55 years of working so hard at hearing, my fantasy is not a cure that would somehow rewire my brain toward normalcy. My fantasy is to never have to process sounds again, ever. I suppose that if I sat in front of another therapist and expressed those very thoughts, it’s more likely than not that the therapist would see them as a sign of pathology. After all, who wants to be deaf rather than “normal”?
Oh, dear Lord, I do. I’d rather hear with my eyes and talk with my hands. It would be a blessed, blessed relief.
© 2013 by Rachel Cohen-Rottenberg
For my crip body with its aching hips
the unexpected pain
that radiates into belly and legs and spine
the signals that suddenly don’t reach knees
For this body, I offer praise upon praise.
For the exhaustion of ears that cannot filter
one sound from another
words of laughter, anger, boredom, joy
fragments of everyday stories
talk about children and weather and
racism and baseball
all equally embraced and resisted
by a mind that doesn’t know
what background noise
For this body, I sing halleluyah.
For watching your speech form words in my head
for reading the words in an endless stream
for inscribing my words on the parchment of my mind
for forming painstaking speech out of just the right ones
just as you’ve started talking about something else
For this body, I give thanks.
For the tenacity of thought
that hikes through canyons and across
searching for something new in the
at 3 o’clock in the morning when
all I want to do is, please God, let me sleep
For this body,
I pour out my love.
For the days that I cannot find words
for the days that the colors won’t translate
for the days that the verbal torrents come
and my words somersault and backflip
and wind in circles around themselves
For the days I long to talk like you
like you, whose thoughts become speech
like arrows that never fail to find their mark,
effortlessly, it seems,
while you are doing ten other things
as though it were nothing
as though it were the easiest thing ever
Before this body, my body, I stand in awe.
Does it surprise you
that I praise this body?
Does it surprise you that I love it so?
I will not hate this body my mother gave me
this body that that caresses, that comforts, that reassures,
that sustains other bodies
that bore exquisite life.
Why should I cast it out of the circle of love?
My body fights, it curses, it cries
it pours out words of outrage and grief and hope.
Why should I not hold it close?
The one you call broken
The one I have always known.
© 2013 by Rachel Cohen-Rottenberg
So this morning, I was riding the Santa Cruz Metro bus to Live Oak when a woman tried to get on without paying the full fare. She told the bus driver she had only 50 cents. He told her she couldn’t board. She told him that she had to go and get her check. He told her she couldn’t board. She offered to pay double the fare tomorrow. He told her she couldn’t board.
I felt so badly for the woman that I offered to pay her fare. Of course, she was pleased – perhaps a little too pleased. She immediately ran over to me and said, “Thank you, thank you, thank you!” and hugged and kissed me. I could smell the alcohol on her breath.
After she paid her fare, she sat next to me in the accessible section and hugged me again. And again. And again.
I have a very difficult time talking to people when they’re drunk – unless of course I’m drunk, which I wasn’t, because it was 11:30 in the morning and, besides, I don’t drink. But the woman was really very sweet, and we had a pleasant conversation, which was punctuated by many pats on my knee and a few more hugs. And then, because she was curious and had very little verbal self-control, she asked why I use a cane.
I was in a generous mood, so I told her. To my surprise, she did not respond by telling me how I could cure my hip with prayer, yoga, or herbal remedies. Instead, she lifted up her shirt and showed me – oh my God — a partially healed knife wound in her abdomen.
I didn’t have time to feel cranky about the fact that she’d only asked me about my hip so that she could show me her wound. I was too busy listening to the story she told about how she’d gotten it. The story didn’t make a lot of sense, but from what I could piece together, she had been tutoring a woman’s son, and the woman came in and got angry and stabbed her. Somehow, in addition to the knife wound, she also sustained a back injury and ended up with two titanium plates holding her spine together.
On a normal day, I’m tongue-tied with drunk talkative people, but this story put me way into the zone of I have no idea what to say and never will. So I attached myself to the one point of commonality I could find.
I said, I have a titanium plate, too — in my neck! I have no idea why. I just needed to say something. Anything – other than, Oh my God oh my God oh my God.
She high-fived me, and my stop came up soon after. She hugged me again and promised to pay my fare next time.
Life is nothing if not interesting.
© 2013 by Rachel Cohen-Rottenberg
This piece is not explicitly disability related, but because all oppressions work along similar lines, many of the issues raised by the death of Trayvon Martin resonate in my experience as a disabled woman — particularly the whole question of who gets to occupy space and who gets treated with hostility for trying to do so. More and more, as I watch how people occupy space together, I see the outlines of how our society and its hierarchies are constructed. Racism is part of that. Ableism is part of that. All forms of bigotry are part of that. They intersect and they support one another, and they all rely on nearly full-scale denial that any of it is happening at all. This post is my attempt to break through one part of that denial.
The Department of Justice is opening an investigation into whether to indict George Zimmerman on civil rights charges in the death of Trayvon Martin. The bar for such prosecutions is high; the government must prove Zimmerman’s state of mind on the night that Trayvon was killed. In other words, they must prove that he followed and killed Trayvon because he was black.
This standard has been echoed on Internet comment forums in the words of people who keep repeating the same questions over, and over, and over: How do you know what was in George Zimmerman’s mind? How do you know that he was acting out of racist motives? Over and over, I hear people say that we shouldn’t judge the man, that we don’t know what was in his mind and heart, that we should be charitable and exercise caution in jumping to conclusions.
I have just one thing to say to that:
Listen up, my white brothers and sisters. I’m white. You’re white. We can talk freely here, yes?
We all know very well what was in George Zimmerman’s mind, because the same thing is in our minds when we see a young black man in a hoodie walking down the street at night. Our shoulders tense up. We feel suspicion. We start thinking “danger.”
Most of us have the good sense to be ashamed that we feel that way. Most of us have the good sense not to follow the man.
But maybe we walk a little faster. Maybe we lock our car doors. Maybe we cross the street. Or maybe we take a deep breath, suck up the fear, and walk by that young black man in a hoodie hoping against hope that nothing bad happens.
You know it’s true.
I feel all of these fears. All of them. They go through my mind and body before I’m even aware of it happening. I keep myself from crossing the street and locking my car doors because I ‘ll be damned if I’m going to disrespect a man for using a public road.
But it’s horrifying to me that after several decades of knowing full well how racism works and how it demeans and how it kills that all of these suspicions course through me in a millisecond, before my head even has a chance to catch up. It’s as though something from the outside has come in without my consent — something that doesn’t originate in me but lives in me nonetheless.
I used to wonder how this could be. I was raised in an anti-racist household. My parents would never have forgiven me if a racial slur had ever come out of my mouth. They made me understand that my cozy little white corner of the world was an accident of fate, and that it was my responsibility to take my privilege and be the ally of people without that privilege. I’ve been working for peace and justice my whole life.
I was raised to know better. That’s the constant refrain I hear from my white brothers and sisters: How could I be racist? My parents raised me to treat everyone equally.
I’m here to tell you what you don’t want to hear: It doesn’t matter. When it comes to the impact of full-scale systemic racism, being well-raised doesn’t provide a force-field that protects anyone. At best, being well-raised provides a set of values and a mode of critique for the racism we carry and its dire consequences. But when it comes to protecting us from the indoctrination of an entire culture, the teachings of our individual upbringings cannot possibly compete with the constant, unrelenting, and merciless messages we’ve heard from the day we were born.
We were born into a cultural narrative that says that black men are aggressive, dangerous, and not to be trusted.
We were born into a cultural narrative in which the black man is always the aggressor, always at fault, always suspect.
We were born into a culture that speaks this narrative so often and with such force that there is nowhere to go to get away from it.
We were born into a culture in which fear and loathing and indoctrination into racism have been going on for centuries and will continue to go on after we’re gone. All we can do is fight them in the here and now so that maybe someday, they’ll be gone forever.
Now, if it makes your well-intentioned soul feel any better, I can tell you that the world you inherited is not your fault. It’s not your fault we’re all neck deep in this shit.
It’s not your fault that you were born into this world, but it’s your responsibility to admit to its hold on you and to stop pretending that oppressed people are over-reacting to the bigotry that swirls around them every damned day. It’s not your fault that all of this crap is in your head, but it’s your responsibility to acknowledge it and to root out as much of it as you can. It’s not your fault that you’ve been conditioned to feel fear, but it’s your responsibility to admit to the feeling in your gut when you see young black men walking down the street at night.
It’s not your fault that you feel all of these things, but it’s your responsibility to not let your shame keep you from being an ally of the people fighting them.
Yeah, it’s hard work. Yeah, no one wants to admit that they carry racism or ableism or homophobia or any other kind of bigotry. But guess what? We all do. Who can possibly escape these things when our entire culture is saturated with them?
I know it’s hard to hear someone suggest that maybe you’re not as neutral and as color-blind as you think you are. It’s painful. But while you’re feeling how hard it all is, please remember this: In the country in which you live, black men are taking their lives in their hands just to go out to get their groceries. Black men have to live with suspicion every time they try to occupy space. Black men have to live with white people pretending that none of this is happening.
Admitting to what’s in your mind and heart cannot possibly be as difficult as that. So go ahead and do it. Because it’s the secret that everyone already knows.
© 2013 by Rachel Cohen-Rottenberg
Earlier today, I was doing a bit of food shopping at the local market. There was quite a wait in the checkout line and I was very tired.
There was a woman in front of me who had a six-pack of soda and two bottles of water. She had her items on the conveyer belt in such a way that there was space in front of her groceries; in other words, she hadn’t moved them to the front, and there wasn’t enough room for all of my groceries or for anyone else’s groceries on the conveyer belt. There were people behind me who were waiting to put their stuff on the belt, and she was completely oblivious to everyone and their need to use the space.
I like to get my items out of my cart all at once if I can, because going back and forth from the cart to the conveyer belt inflames some of my vestibular issues and can make me a bit dizzy. I was also quite tired from standing for so long, and I was anxious to get my stuff on the belt so that I could just hang onto the shopping cart. So I gently pushed the divider against her things to move them up a bit (as people often do in these situations) and in so doing, I accidentally knocked over a couple of her soda cans.
I was a bit embarrassed, and I apologized for knocking over the cans. She looked at me like I’d just committed some sort of crime. She didn’t accept my apology and she didn’t say a word.
I thought, “Okay, whatever,” and I figured we were done.
A full two minutes later, after she had paid for her groceries, she turned around and got in my face and said, “You know, it wasn’t necessary to touch my stuff like that. That was really wrong. Don’t ever do that again.”
It was as though she’d just come out of a self-assertiveness class and decided to practice on me. Bear in mind that I’d already seen my mistake AND APOLOGIZED.
I really wouldn’t have minded if she’d said, “You know, I have a hard time with people touching my stuff. Could you not do that?” I would have said, “Yeah, I hear you. My apologies.”
I really wouldn’t have minded if she’d said, “Next time, could you ask?” I would have said, “I’ll do my best. I have trouble with my hearing and it’s hard for me to talk in situations like this.”
But when people start using the pronoun You instead of I, and start telling me what is Necessary, and get otherwise self-righteous and in my face — I really can’t tolerate that crap.
She didn’t have an ounce of consideration for the people behind her and what their needs might be.
It didn’t occur to her that perhaps I had been waiting for several minutes for her to wake up to the presence of other people.
She had made a decision about what was Necessary and Not Necessary, when she had no clue about the state of my body and what was necessary FOR ME.
She didn’t know that my auditory processing issues makes it difficult for me to initiate conversations with anyone in a sound-rich environment. She didn’t know that I instinctively take the path of least resistance and do not talk in a situation like that because it is painful and exhausting. She didn’t know that my vestibular issues make it very difficult for me to move things back and forth. She didn’t know that my hip was hurting and I just wanted to get my stuff out of the basket so that I could hang onto it.
But she made a decision about what was Necessary, as though it were some sort of objective fact, as though what is Necessary for one person is Necessary for everyone else. She didn’t stop to think that maybe she didn’t know the first thing about me and shouldn’t be telling me what’s what. It didn’t even occur to her.
THAT’S privilege, folks. She became the authority on what was Right and Necessary in that situation without stopping to consider that other people might be having a whole other experience of the world.
For once, words did not fail me. I was pissed, and somehow, being pissed help me break through my shyness, my exhaustion, my resistance, and my general shock. I said in a very loud voice, and it took all the energy I could muster:
“Excuse me, but YOU could have been paying attention to where YOUR things were on the conveyer belt and moved them for MY convenience.”
Of course, she ignored me, turned her back as I was talking, and walked away. And no one else said a word. I was shaking with anger and embarrassment. I hate confronting people in public like that, particularly strangers. But I’m getting really, really sick of people assuming that their experience is just like everyone else’s. I’m sick of people assuming that everyone is able-bodied, that everyone can talk on demand, that everyone can move things without getting dizzy, that everyone can stand up without holding onto something, and that everyone somehow owes them space and consideration and they don’t owe anyone a goddamned thing. I’m sick of the ignorance, of the privilege, and of the utter lack of empathetic imagination.
And most of all, I’m sick of people getting in my face over nonsense like who gets to go through a door first or their soda cans falling over — like a goddamned soda can falling over is more important than the fact that I don’t fall over.
So I held my space. And I came home shaking. But I did it. It was a small thing, but it was also huge.
© 2013 by Rachel Cohen-Rottenberg
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