[The graphic consists of a bingo card with the words “But You Don’t Look Disabled!” at the top. The card consists of five rows of five boxes each. The text in each row consists of the following, from left to right:
Row 1: Well, that’s the *main* thing.
And that’s relevant WHY?
Before we continue, I’ll need to see your medical credentials.
Can I borrow your x-ray vision goggles, please?
Seriously. NOT a compliment.
Row 2: Shhh! You’ll blow my cover!
I’m not. I just play a disabled person on TV.
Awww. You’re just trying to make me feel WORSE.
I’d love to agree, but I don’t want to be wrong.
You really need to expand your definitions.
Row 3: Bwahahaha!
And you don’t look completely tactless!
WTF? Free space WTF?
Thank you, but that is NOT helpful.
What does disabled look like?
Row 4: You’re practicing medicine? Right here?
Well, I am. And things look like themselves, right?
I’m sorry. Do I know you?
Didn’t you know? I’m just faking it for the social status.
And you don’t look like a doctor?
Row 5: I’m actually an alien. But you can’t see that, either.
What do you imagine I think of you right now?
And you don’t look ignorant. But here we are!
I must have forgotten to wear my black triangle.
Crowd-sourced at https://www.facebook.com/DisabilityAnd
October 15, 2013]
© 2013 by Rachel Cohen-Rottenberg
Yesterday was National Coming Out Day. I officially came out as bisexual, and it was a celebration. No angst. No fear. No second thoughts. Just a celebration.
It was a such a contrast with coming out as disabled at the end of 2008, with all of the fear and dread that attended that decision. There have been many times since then that I’ve thought that coming out as disabled was the worst decision I’d ever made in my life. If I could have put the toothpaste back in the tube at those moments, I would have.
Of course, I’m a few years down the road now and feel much more comfortable, proud, and confident. But oh, what a process! And of course, the process never ends. I always have internalized shame, and hatred, and fear to root out of my head. And I still have to deal with a world of people who don’t understand the physical and social experience of disability. But in general, I navigate these waters much better than I did at the outset.
It’s very difficult to come out as disabled, I think, because we face the dual reality that most people a) hate our bodies absolutely unapologetically and b) consider that hatred entirely natural. It’s for this reason that they can use disability slurs constantly and think nothing of it. It’s for this reason that they can segregate and exclude us as though we’re substandard merchandise to return to the manufacturer. It is still considered natural to react with revulsion against us in a way that other groups have fought against more successfully — not entirely successfully, obviously, but more successfully.
Partly, we face this hatred because our culture worships control and denies the fragile and ever-changing life of the body. Partly, we face this hatred because the medical model has taken over as a metaphor for human life. People are no longer evil. People no longer make bad choices. People are no longer victimized by oppression. People no longer act out of ignorance, or selfishness, or greed. No. Now they’re sick, crazy, brain-dead, retarded, mentally ill, have low IQs, and on and on.
In the face of this hatred, it’s very, very difficult to convince people that you love your disabled body because it’s the one you live in. You say that you love your body, and people look at you as though you don’t quite understand your own reality.
My body hurts a lot these days. But I still love it. It’s the body I was born with. It enables me to experience life. Without it, I’d have no life at all. I might not love every sensation in my body, but I love my body, even on the hardest days, because it gives me life.
© 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
Updated Post: Just How Far We Are From Equality: The San Diego Museum of Man’s Access/ABILITY Exhibit
I’ve updated this post after receiving an email and a comment from Grant Barrett, the Marketing Manager at the San Diego Museum of Man. Apparently, the disability exhibit is on the first floor and is fully accessible; moreover, the city of San Diego — not the museum — is responsible for the elevator repair. The second floor, which holds other exhibits, is not accessible at this time. Mr. Barrett writes:
Rachel, thanks so much for writing about the exhibit.
Unfortunately, you got an essential fact wrong: the access/ABILITY exhibit is totally accessible to people with disabilities. It’s on the first floor, and we have ramps and wide navigation paths everywhere we need them on that level.
We put the elevator notice on that page because we know that our disabled guests will want to see more than that one exhibit. The notice is also on the front page of the website and we announce it with signs at admissions.
The elevator repair, by the way, is beyond our control. The City of San Diego owns our buildings and maintains our elevators. We have no say as to when they will repair them or how long it will take. We’re hoping that the repairs will take much less time than predicted.
Thanks for being considerate of all of our visitors and keep up your good works.
In the light of Mr. Barrett’s email and comment, of course, I’ve corrected the post. My main points, however, still stand: any inaccessibility is a civil rights violation, and the presence of the exhibit itself reflects the basic segregation and inequality with which disabled people live.
I know that our society, by and large, does not yet see disability as a civil rights issue. I know that when people see stairs but no elevator, most of them don’t realize they’re looking at a civil rights violation. I know that most people don’t even blink when they see a sign that says that people with disabilities have to enter through the back door.
But every now and then, I’m surprised by how far behind the curve we are. Case in point: The San Diego Museum of Man has an exhibit called access/ABILITY in which you can allegedly “learn about how people with disabilities navigate the world!” (Exclamation point not mine.)
How does one become thus enlightened? Well, all you have to do is to “Learn phrases in American Sign Language, type your name in Braille, try a hand-pedaled bike and take part in a multi-sensory City Walk!” (Again, exclamation point not mine.) Because that’s what it takes to understand how disabled people live. Just go to a museum.
And of course, it is sure to “inspire.” It always, always has to “inspire.” Because really, that’s how disabled people navigate the world. Inspiringly.
And then — and hold on for this one —
the exhibit is currently not accessible to people with disabilities.the entire second floor is inaccessible to people with disabilities. Yes: in a museum with an exhibit showing how disabled people “navigate the world,” disabled people cannot navigate up to the second floor to see any of the exhibits there. I’m not kidding. The website reads:
Our elevator will be out of service June 24 through August 2. If you require an elevator, you will be unable to visit the second floor exhibits. We apologize for the inconvenience.
Of course, these three sentences are not without irony. After all, they say more about how disabled people navigate the world than a museum exhibit ever could. Not only is the
exhibit second floor inaccessible, but the lack of an elevator is described as an “inconvenience” rather than as a civil rights violation. For those just joining us, that’s like calling a sign that says, “No blacks or Jews allowed” an inconvenience rather than a civil rights violation.
The very existence of this kind of exhibit (are we still exotic animals to be exhibited?) speaks volumes about the inequality and social segregation of people with disabilities. Volumes. If we people with disabilities were actually integrated into society, people would have a pretty stellar notion of how we navigate the world. But when we’re set apart, we become curiosities.
As far as I’m concerned, this kind of exhibit is simply the 21st-century equivalent of a freak show. The fact that such things still exist is evidence of how very far we have to go.
© 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
(April 26, 2013, Albatross University) — In a dramatic new breakthrough, researchers have concluded that autism is caused by being alive.
“This is a great day for medical science,” said Dr. Ernest Eagerly, Director of the Department for the Medicalization of Humanity at Albatross University. “Our research team sorted through a myriad of studies linking autism to everything from pet shampoo to freeway traffic to creases in the placenta. After controlling for variables in the research such as usefulness, rationality, shameless self-promotion, and general hysterical posturing, we determined that all of the studies had one thing in common: people with autism are alive.”
But that’s not all, according to Dr. Eagerly. “Not only are people with autism alive, but their parents are also alive — a clear and dramatic indicator of an underlying genetic mechanism. This new understanding opens up exciting avenues for treatment and cure. If we can locate the gene that controls for being alive, we might just crack the autism puzzle once and for all.”
Autism is a neurodevelopmental disorder that has stolen the souls of 1 out of 88 adorable children who otherwise look completely human. There is no cure.
While the latest research findings are dramatic, experts caution the general public that it’s important to be circumspect. “Being alive takes many forms and one has to be on guard against them at all times,” said Jenny McWhatsHerName, spokesperson for Only My Generation! (OMG!), an organization dedicated to the proposition that an epidemic of aliveness began with the development of vaccines. “Aliveness is not just a simple question of breathing,” she said with a giggle. “I mean, duh! You can’t simply hold your breath until you pass out and think that you’re going to be able to beat this autism thing! Laughing, loving, feeling at ease with your life — these are all warning signs.”
What’s the bottom line, according to OMG!? “Be afraid,” she said. “Be very afraid.”
Dr. Eagerly agrees. “We have found that the best defense against a diagnosis of autism is to sit completely skill and live in abject fear. I know it seems extreme,” he added, “but what’s the alternative? Enjoying your life? That will only result in hordes of people with autism being released upon an innocent and unsuspecting public.”
Because the only known remedy for being alive is dying, researchers stress that a cure may not be in the offing for several years. “It’s a tricky situation,” said Dr. Eagerly. “How do we separate autism from being alive, when the two are so closely linked?” He lauds the efforts of organizations like “OMG!” that suck the will to live right out of autistic people and their families.
“These organizations are on the cutting edge,” he said. “Just keep sending them your money.”
© 2013 by Rachel Cohen-Rottenberg