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But You Don’t Look Disabled!
Oct 22nd, 2013 by Rachel Cohen-Rottenberg

[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.
*Silence*
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
Representation/posts/681017075242936
October 15, 2013]

© 2013 by Rachel Cohen-Rottenberg

Passing and Disability: Why Coming Out as Disabled Can Be So Difficult
Oct 12th, 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

The Stories We Tell: Coming to Terms with PTSD
Oct 5th, 2013 by Rachel Cohen-Rottenberg

One of the ways in which I navigate the cacaphony of competing discourses about disability, mental health, and just about everything else is to remind myself that we humans are always storytelling and that these discourses are just a series of stories. Along with eating, sleeping, and breathing, storytelling is what we do. Certainly, some things — like the sheer physicality of our bodies — aren’t just stories, and yet, we interpret even these things with stories about them.

I’ve been thinking a lot about stories lately — about the stories I tell about myself, about the stories I tell about other people, about the stories people have told about me, about the stories the media tells about everyone. I don’t fault people for telling stories. It’s what we do in order to makes sense out of our existence. As Arthur Frank writes, we are beings who, in order to make life habitable, must tell stories from the narrative resources available to us:

“To say that humans live in a storied world means not only that we incessantly tell stories. Stories are presences that surround us, call for our attention, offer themselves for our adaptation, and have a symbiotic existence with us. Stories need humans in order to be told, and humans need stories in order to represent experiences that remain inchoate until they can be given narrative form… We humans are able to express ourselves only because so many stories already exist for us to adapt, and these stories shape whatever sense we have of ourselves… ” (Frank 2012, 36)

One of the things that comforts me in this life, especially when I feel barricaded in by the absurdities of the things that people say, is to remember that we can rewrite these stories. If we are all inveterate storytellers — incorporating pieces of different narratives and creating new narratives from what exists — then we can always reinterpret and rewrite our stories. We are always free to engage that process. The problem is that stories often masquerade as fact, and we feel cut off from rewriting them at all.

To say that a story isn’t fact doesn’t mean that it’s entirely fiction. The stories that people tell always have truths in them somewhere. But they are not necessarily truths about the purported subjects of the story. A story about me might contain no truths about me at all. It might contain truths about the storyteller’s fears. It might contain truths about the storyteller’s trauma. It might contain truths about the storyteller’s desire for power.

There are two sets of stories that plague me. One set consists of the negative stories that people have told about me or about people like me. These stories tend to be pathologizing. Sometimes, they are so ubiquitous that it is difficult to have the strength to analyze, reinterpret, rewrite, and rethink them. But I’m coming to see that it’s the stories that I tell myself about myself that are the most troubling. Some of these stories incorporate the larger narratives, sometimes by design and sometimes unintentionally. Others are a rebellion against the larger narratives. It would be impossible to avoid responding to these narratives in some way.

These days, there is one story of mine whose validity I’ve been calling into serious question. It has to do with Post-Traumatic Stress Disorder (PTSD).

I’ve been dealing with PTSD for nearly my whole life. It began over 50 years ago, when I was four years old. I wasn’t diagnosed until I was in my thirties, and that diagnosis was like the heavens opening up and the angels singing. I know that it sounds like a strange thing to say about a PTSD diagnosis, but how else can I describe the way in which the PTSD markers — the core narrative elements of the PTSD story — mirrored my own story so well? Suddenly, someone was narrating my story in a way that I recognized.

Over time, I learned to navigate and handle PTSD triggers. I learned to distinguish between a trigger and actual danger. I learned how to detach and breathe and not react when the catastrophic thinking started. I got very good at it.

And it worked for a long time — until a whole new level of protracted trauma came along, triggered the old trauma, and gave me a whole new set of things to heal from. It took me a long time to recognize the new trauma as trauma, even though it went on for 11 years. My husband and I moved to California this year, just to get away from it.

In order to cope all these years, I’ve told myself a story about how well my old adaptive patterns were working. And so, in true PTSD fashion, I went back to the story that had served my survival as a child — the story in which I was always the person who has it together, who figures it out, who doesn’t show weakness, who helps other people, who never asks for help, who is always on top of things, and who is somehow beyond regular, garden-variety human needs. In other words, I have spent the past decade or more dealing with PTSD by telling myself a story that am not traumatized. Not really. Maybe I used to be. But surely, not anymore.

Right.

These days, that story is showing itself to be largely fiction. It began a few days ago, when my husband left for a visit to the east coast. I felt tremendous sadness. I looked at the sadness and thought, “What is that doing there?” I started to ask the sadness what it was trying to show me. And within three days, I got the message: my body is absolutely racked by trauma. For the first time in my life, I am fully inside my body and it is incredibly painful. The level of stress, of sheer physical tension, of never feeling at ease, of never feeling safe is constant. I look at some of the things I do, and I see how hypervigilant I am.

For instance, there is the way I sit on the sofa and use the computer. Here is a picture of my sofa:

[The photo shows a picture of a futon with a blue spread in a mandala design. There are four white pillows along the back and some beige carpeting is visible in front. A small wooden end table is visible to the right.]

It’s a futon that doubles as a guest bed. It looks very beautiful and comfortable, doesn’t it? But do I sit on this futon comfortably, leaning against the pillows, relaxing? No, I don’t. I sit on the edge, next to the table, with one foot on the ground, looking like I’m ready to fight an intruder who is about to mercilessly fuck with me.

You can see why my story about not being traumatized isn’t exactly working.

One of the things I have noticed recently about my attempt to fend off PTSD is that I have bifurcated the telling of my stories into public and private. In my public writing, I will talk about disability quite openly. But privately, I rarely talk about it at all. For instance, I wrote to my regular doctor today about whether she could help with a letter of medical necessity for a service dog for PTSD, and her response was along the lines of “We’ve never talked about your PTSD. We really should.”

It’s true. We never have. I wrote her back and basically said, “We’ve never talked about most of my disabilities. We really should.”

I’ve been seeing this doctor since May. She knows about my auditory processing disorder. She knows about the problem with my hip. But she does not know about my Asperger’s diagnosis. She does not know about my recent diagnosis of mixed receptive-expressive speech disorder. She does not know about my dypraxia. She does not know about my severe vestibular issues. She does not know about my sensory processing disorder. She only learned about my PTSD today, and I’ve been dealing with that since I was four.

Why hadn’t I talked to her? Partly, it’s that I’m so wounded by many of the assumptions that people make about my disabilities that I almost can’t bear it anymore. I have had so many bad experiences. And of course, the PTSD gets in the mix there, because the PTSD says, “Right. Don’t talk about it. Don’t show any vulnerability. Act like you’re fine.”

I told her why I hadn’t raised the issue. And her response was, “I understand your hesitation.”

So it looks like we’ll be having that conversation after all. I will also be seeing someone for EMDR (Eye Movement Desensitization and Reprocessing) therapy. And I’m making tracks about getting a service dog. I can’t continue to talk about disability publicly and pretend privately like everything is fine.

I sometimes wonder whether passing as nondisabled isn’t sometimes an expression of PTSD. I mean, who wants to deal with all of the crap that gets thrown at us around disability if they can help it? Over the past couple of years, I’ve done everything I can to avoid as much of it as possible. But now I’m tired and my body hurts. It’s time to start telling the people I know in my daily life, not just in my writing.

Perhaps it’s safer to talk with all of you about it. If you’re reading this piece, it’s because you have some connection to the world of disability. But most people do not. And they’re the ones I have to start addressing, even when I feel like one more refusal, one more ignorant response, one more uncaring word is going to break my heart.

References

Frank, Arthur. W. “Practicing Dialogical Narrative Analysis.” In Varieties of Narrative Analysis, edited by James A. Holstein and Jaber F. Gubrium, 33-52. Thousand Oaks, CA: Sage Publications, 2012.

© 2013 by Rachel Cohen-Rottenberg

Doing Social Justice: Thoughts on Ableist Language and Why It Matters
Sep 14th, 2013 by Rachel Cohen-Rottenberg

The economy has been crippled by dept.

You’d have to be insane to want to invade Syria.

They’re just blind to the suffering of other people.

Only a moron would believe that.

Disability metaphors abound in our culture, and they exist almost entirely as pejoratives. You see something wrong? Compare it to a disabled body or mind: Paralyzed. Lame. Crippled. Schizophrenic. Diseased. Sick. Want to launch an insult? The words are seemingly endless: Deaf. Dumb. Blind. Idiot. Moron. Imbecile. Crazy. Insane. Retard. Lunatic. Psycho. Spaz.

I see these terms everywhere: in comment threads on major news stories, on social justice sites, in everyday speech. These words seem so “natural” to people that they go uncritiqued a great deal of the time. I tend to remark on this kind of speech wherever I see it. In some very rare places, my critique is welcome. In most places, it is not.

When a critique of language that makes reference to disability is not welcome, it is nearly inevitable that, as a disabled person, I am not welcome either. I might be welcome as an activist, but not as a disabled activist. I might be welcome as an ally, but not as a disabled ally. I might be welcome as a parent, but not as a disabled parent. That’s a lot like being welcomed as an activist, and as an ally, and as a parent, but not as a woman or as a Jew.

Many people have questions about why ableist speech matters, so I’ll be addressing those questions here. Please feel free to raise others.

1. Why are you harping so much on words, anyway? Don’t we have more important things to worry about?

I am always very curious about those who believe that words are “only” words — as though they do not have tremendous power. Those of us who use words understand the world through them. We use words to construct frameworks with which we understand experience. Every time we speak or write, we are telling a story; every time we listen or read, we are hearing one. No one lives without entering into these stories about their fellow human beings. As Arthur Frank writes:

“Stories work with people, for people, and always stories work on people, affecting what people are able to see as real as possible, and as worth doing or best avoided. What is it about stories – what are their particularities – that enables them to work as they do? More than mere curiosity is at stake in this question, because human life depends on the stories we tell: the sense of self that those stories impart, the relationships constructed around shared stories, and the sense of purpose that stories both propose and foreclose.” (Frank 2010, 3)

The stories that disability metaphors tell are deeply problematic, deeply destructive, and deeply resonant of the kinds of violence and oppression that disabled people have faced over the course of many centuries. They perpetuate negative and disempowering views of disabled people, and these views wind their ways into all of the things that most people feel are more important. If a culture’s language is full of pejorative metaphors about a group of people, that culture is not going to see those people as fully entitled to the same housing, employment, medical care, education, access, and inclusion as people in a more favored group.

2. What if a word no longer has the same meaning it once did? What’s wrong with using it in that case?

Ah yes. The etymology argument. When people argue word meanings, it generally happens in a particular (and largely unstated) context. With regard to ableist metaphors, people argue that certain meanings are “obsolete,” but such assertions fail to note the ways in which these “obsolete” words resonate for people in marginalized groups.

For example, I see this argument a great deal around the word moron, which used to be a clinical term for people with an intellectual disability. I have a great-aunt who had this label and was warehoused in state hospitals for her brief 25 years of life. So when I see this word, it resonates through history. I remember all of the people with this designation who lived and died in state schools and state mental hospitals under conditions of extreme abuse, extreme degradation, extreme poverty, extreme neglect, and extreme suffering from disease and malnutrition. My great-aunt lay dying of tuberculosis for 10 months under those conditions in a state mental hospital. The term moron was used to oppress human beings like her, many of whom are still in the living memory of those of us who have come after.

Moron — and related terms, like imbecile and idiot – may no longer be used clinically, but their clinical use is not the issue. They were terms of oppression, and every time someone uses one without respect for the history of disabled people, they disrespect the memory of the people who had to carry those terms to their graves.

3. What’s wrong with using bodies as metaphors, anyway?

Think about it this way: Consider that you’re a woman walking down the street, and someone makes an unwanted commentary on your body. Suppose that the person looks at you in your favorite dress, with your hair all done up, and tells you that you are “as fat as a pig.” Is your body public property to be commented upon at will? Are others allowed to make use of it — in their language, in your hearing, without your permission? Or is that a form of objectification and disrespect?

In the same way that a stranger should not appropriate your body for his commentary, you should not appropriate my disabled body — which is, after all, mine and not yours — for your political writing or social commentary. A disabled body should not appear in articles about how lame that sexist movie is or how insane racism is. A disabled body should be no more available for commentary than a nondisabled one.

The core problem with using a body as a metaphor is that people actually live in bodies. We are not just paralyzed legs, or deaf ears, or blind eyes. When we become reduced to our disabilities, others very quickly forget that there are people involved here. We are no longer seen as whole, living, breathing human beings. Our bodies have simply been put into the service of your cause without our permission.

4. Aren’t some bodies better than others? What’s wrong with language that expresses that?

I always find it extraordinary that people who have been oppressed on the basis their physical differences — how their bodies look and work — can still hold to the idea that some bodies are better than others. Perhaps there is something in the human mind that absolutely must project wrongness onto some kind of Other so that everyone else can feel whole and free. In the culture I live in, disabled bodies often fit the bill.

A great deal of this projection betrays a tremendous ignorance about disability. I have seen people defend using mental disabilities as a metaphor by positing that all mentally disabled people are divorced from reality when, in fact, very few mental disabilities involve delusions. I have seen people use schizophrenic to describe a state of being divided into separate people, when schizophrenia has nothing to do with multiplicity at all. I have seen people refer to blindness as a total inability to see, when many blind people have some sight. I have seen people refer to deafness as being locked into an isolation chamber when, in fact, deaf people speak with their hands and listen with their eyes (if they are sighted) or with their hands (if they are not).

Underlying this ignorance, of course, is an outsider’s view of disability as a Bad Thing. Our culture is rife with this idea, and most people take it absolutely for granted. Even people who refuse to essentialize anything else about human life will essentialize disability in this way. Such people play right into the social narrative that disability is pitiful, scary, and tragic. But those of us who inhabit disabled bodies have learned something essential: disability is what bodies do. They all change. They are all vulnerable. They all become disabled at some point. That is neither a Good Thing nor a Bad Thing. It is just an essential fact of human life.

I neither love nor hate my disabilities. They are what they are. They are neither tragic nor wonderful, metaphor nor object lesson.

5. Disabled people aren’t really oppressed. Are they?

Yes, disabled people are members of an oppressed group, and disability rights are a civil rights issue. Disabled people are assaulted at higher rates, live in poverty at higher rates, and are unemployed at higher rates than nondisabled people. We face widespread exclusion, discrimination, and human rights violations. For an example of what some of the issues are, please see the handy Bingo card I’ve created, and then take some time over at the Disability Social History Project.

6. If my disabled friend says it’s okay to use these words, doesn’t that make it all right to use them?

Please don’t make any one of us the authority on language. It should go without saying, but think for yourself about the impact of the language you’re using. If you stop using a word because someone told you to, you’re doing it wrong. It’s much better if you understand why.

7. I don’t know why we all have to be so careful about giving offense. Shouldn’t people just grow thicker skins?

For me, it is not a question of personal offense, but of political and social impact. If you routinely use disability slurs, you are adding to a narrative that says that disabled people are wrong, broken, dangerous, pitiful, and tragic. That does not serve us.

8. Aren’t you just a member of the PC police trying to take away my First Amendment rights?

No. The First Amendment protects you from government interference in free speech. It does not protect you from criticism about the words you use.

9. Aren’t you playing Oppression Olympics here?

No. I’ve never said that one form of oppression is worse than another, and I never will. In fact, I am asking that people who are marginalized on the basis of the appearance or functioning of their bodies — on the basis of gender identity, race, ethnicity, sexual orientation, class, size, and disability — get together and talk about the ways in which these oppressions weave through one another and support one another.

If you do not want disability used against your group, start thinking about what you’re doing to reinforce ableism in your own speech. If you do not want people of color to be called feeble-minded, or women to be called weak, or LGBT people to be called freaks, or fat people to be called diseased, or working-class people to be called stupid — all of which are disability slurs — then the solution isn’t to try to distance yourself from us and say, No! We are not disabled like you! The solution is to make common cause with us and say, There is nothing wrong with being disabled, and we are proud to stand with you.

10. Why can’t we use disability slurs when the target is actually a nondisabled person?

To my knowledge, the president of the United States is not mentally disabled, and yet his policies have been called crazy and insane. Most Hollywood films are made by people without mobility issues, and yet people call their films lame. Someone who has no consciousness of racism or homophobia will be called blind or deaf to the issues, and yet, such lack of consciousness runs rampant among nondisabled people.

So why associate something with a disability when it’s what nondisabled people do every single day of the week? As far as I can see, lousy foreign policy, lousy Hollywood films, and lousy comments about race and sexual orientation are by far the province of so-called Normal People.

So come on, Normal People. Start owning up to what’s yours. And please remember that we disabled folks are people, not metaphors in the service of your cause.

References

Disability Social History Project. http://www.disabilityhistory.org. Accessed September 14, 2013.

Facebook. “Disability and Representation.” https://www.facebook.com/photo.php?fbid=638151876196123&set=a.535870946424217.126038.447484845262828&type=1. Accessed September 14, 2013.

Frank, Arthur W. Letting Stories Breathe: A Socio-Narratology. Chicago, IL: The University of Chicago Press, 2010.

© 2013 by Rachel Cohen-Rottenberg

What It Means To Be A Help Object
Sep 3rd, 2013 by Rachel Cohen-Rottenberg

I’ve been having a conversation with my friend Julie Rose. Julie has just been diagnosed with Lupus and has become visibly disabled. In response to my piece about disabled people as help objects, she wrote to me and said that she really couldn’t wrap her mind around what being a help object meant until she began to navigate the world with a visible disability. Now she understands it excruciatingly well.

What Julie has to say is so right and so clear that, with her permission, I am sharing it here. She writes:

Before the last few days, I was confused by the term “help object.” It took me less than 48 hours of being a “public cripple” to know what it means.

So far:

1. It means that if you offer me help and I don’t accept it, I’m an ungrateful, ungracious asshole. It doesn’t matter if what you are offering me is useful or not. It doesn’t even matter if what you are offering might be life threatening to me. I must say, “thank you” and accept it with total aplomb.

2. I can’t have a sense of humor. If I do, you will be confused and think I’m fine and feel duped by my asking for help. Therefore, I’m a scam artist, not a cripple.

3. Since I’m home bound, I must have nothing to do and no schedule, so you can barge in on me any time and you can also not show up or call when you have made a commitment to do so. After all, I’ll always be here, in bed, while you are busy with whatever a real life has to offer. I shouldn’t complain. Again, I’d be a whiner or an ungrateful asshole or both.

4. If you don’t follow through with what you promised you’d do, I must still be gracious and say “thank you.” I can’t say it put me out because in your eyes I have no life.

I don’t think I’ve read anything that has made the privilege of Ability quite so clear to me. This level of privilege is stunning. Privilege, in and of itself, isn’t something that one can escape, but it’s something that one can use well or badly. In the kinds of situations that Julie talks about, it’s being used badly.

To use it badly means to treat ill or disabled people as though we belong in some whole other category in which the rules of basic decency do not apply.

Do want to give help? Then ask what help is needed. Do you want to visit? Then ask what a good time might be and show up. Are you wondering how someone can have a sense of humor and be ill at the same time? Stop wondering and start believing.

I fundamentally do not understand why these are such difficult concepts. Do people suddenly lose their rights to be treated like human beings because our bodies change? No. We don’t. Why is this truth so hard to grasp?

© 2013 by Rachel Cohen-Rottenberg

Updated Post: Just How Far We Are From Equality: The San Diego Museum of Man’s Access/ABILITY Exhibit
Jun 28th, 2013 by Rachel Cohen-Rottenberg

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

My Body is Not Public Property: The Disability Version
Jun 25th, 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

Breaking News Experts Say That Being Alive Causes Autism
Apr 26th, 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

Amanda Baggs, the Pressure To Die, and the Case Against Assisted Suicide
Apr 6th, 2013 by Rachel Cohen-Rottenberg

Most people in the disability community know Amanda Baggs as a blogger, a disability rights activist, and the creator of the powerful video, In My Language. I first came to know Amanda in all those ways as well. Then she became a friend, and I found her to be one of the most ethical people I have ever known.

I’ve been pondering for days about how to write at length about what is happening to Amanda. Words have been failing me. All I’ve been able to feel is a deep sadness and a deep outrage that nearly take my breath away. But it’s time — not only because Amanda is a friend and a colleague, but also because her situation shows how easily vulnerable people are pressured to die by those who feel their lives are not worth living.

Amanda is autistic. She is also a wheelchair user and has a condition called gastroparesis (GP) — paralyzed stomach. Because of this condition, Amanda has had several bouts of aspiration pneumonia. The treatment for aspiration pneumonia is excruciating, and another bout could kill her. The only way to save her life is the insertion of a G-J tube through which she can both receive nutrients and vent air and bile from her body. Several doctors at the hospital in which Amanda is a patient suggested a G-J tube, and Amanda decided she wanted it. She has been quite clear about her desire to live.

A life-saving procedure to which a patient agrees ought to be the end of the story. But in the case of a woman with multiple disabilities, it hasn’t been. Amanda has had to fight for the insertion of the G-J tube in the midst of illness and exhaustion. In one especially ghastly encounter, she had to argue with a gastroentereologist who kept suggesting “alternatives” — when they both knew that the only alternative was death. In a post called The weirdness of being told that the death alternative is the one I should consider, Amanda writes:

Every doctor since I got here has been talking about feeding tubes. I discussed it with them and chose the g-j tube. In reality I chose it months ago. There’s been talk about feeding tubes since I was diagnosed with gastroparesis last fall and again when the diagnosis was confirmed this winter. This talk isn’t new or scary. I’m more comfortable with the prospect of a feeding tube than anyone else in the room, aside from being a little afraid of the pain early on after the operation.

What became really disturbing was the gastroenterologist’s attitude towards my treatment. He kept trying to find ways to persuade me that I didn’t want a feeding tube. He said I had to consider alternative options. My DPA pointed out that the current alternative option was death from pneumonia. The gastroenterologist confirmed that he knew that was the only current alternative. Then he went back to what a big scary decision a feeding tube was, and other things intended to dissuade me from what’s known both with gastroparesis and other neurological problems causing these problems, to be commonly the next course of action.I simply can’t continue aspirating like this, getting pneumonia this often is a very bad thing. I’ve had a number of close enough calls I’m not interested in getting any closer.

But apparently this guy, even after “the alternative is death” was spelled out, not only agreed to this, but still kept pushing “the alternative”. And he was not the only person who appeared to know my life was in danger yet kept asking me to reconsider getting the tube, they’ve tried all kinds of ways.

On what possible basis would a doctor discourage a patient from having a life-saving procedure when the patient clearly wants it — and when several other doctors had already suggested it? It makes no rational sense at all. The only way it could possibly make sense is if one started from the premise that Amanda’s life was not worth saving in the first place.

How can a life not be worth saving? Apparently, when it’s a disabled life.

I don’t consider that viewpoint a rational premise on which to base any decision. I think that anyone who believes that a disabled life isn’t worth saving is engaging in bigotry deep and wide, and that kind of bigotry is never rational. It is always based on fear and loathing, no matter how rationally the notion might be presented, and no matter what the educational credentials of the person presenting it.

But, thank God, Amanda’s life is being saved. After a great deal of work by her fierce DPA and numerous outraged phone calls from disability rights activists all over the country, the doctors finally assented to inserting the G-J tube. But the question of the very worth of Amanda’s life remained. After she had signed the consent forms, a pulmonologist asked her not once, but three times, whether she was “at peace” with her decision.

Now, I can understand asking someone whether they’re at peace with a decision to refuse treatment, even though it means death. It’s always a concern that people feel absolutely sure that they want to forego treatment, because death is an irreversible choice. But it makes no rational sense to ask a person who has vehemently expressed a desire to go on living whether she is at peace with the prospect of going on living. And yet, that’s what happened. As Amanda tells it in “Are you at peace with your decision?”:

Before I got my feeding tube. After I’d already signed an informed consent form. A pulmonologist came into my room with a gaggle of interns and residents behind him. People who were learning from him. People who looked up to him as a teacher and role model.He had seen my cat scan. He knew how many times I’ve had pneumonia recently. He knew it would keep happening if we didn’t find a way to stop it. He knew that pneumonia is a deadly disease and that my health was worsening with each infection. He knew how many doctors had tried to talk me out of choosing the feeding tube — choosing to live.

“Are you at peace with your decision?” Is a question I would expect to be asked repeatedly if I’d chosen to avoid treatment and go home and wait to get the infection that would kill me. Not a question that goes with choosing life. He asked me at least three times in a row.

I had a friend who came to visit from out of state, in the room with me at the time. She came because she heard I had pneumonia. Her father died of pneumonia. She was terrified for my life. She witnessed this conversation — easily, as she put it, the most genteel of the ways I’d been pressured to die.

There has been a great deal made lately of the so-called right to die — the right of terminally ill patients to obtain a lethal dose of medication in order to end their lives. Advocates for “death with dignity” believe that they can put enough safeguards in place to ensure that people are able to make a free and autonomous decision, protected from outside pressure at the hands of parties who do not have their best interests at heart.

Under our current system, the very notion of this kind of autonomy is a dangerous myth. There can be no free and autonomous decision to die with dignity when people who want to live with dignity are not encouraged to live — when the very idea that they can live with dignity is not even on the radar of the doctor who walks into the room.

Let’s face it: disabled people represent the failure of the medical profession to live up to the mythology our culture has built around it — that cures are right around the corner, that medical science is all powerful, that life can be made perfect and pain free, and that even death can be put off indefinitely. People with disabilities are an affront to a culture that idolizes the medical profession and assigns it all kinds of power it does not have. The myths by which we live fail abruptly in the presence of a person with disabilities, and doctors are no more immune from the power of those myths than anyone else.

What happens to people who don’t have the support that Amanda has? What happens to people who are sick, and in pain, and alone, and don’t have a fierce advocate? What happens to people who aren’t well known in the disability community? What happens to people who do not realize that they have worth, who do not realize that they have the right the right to live? What happens to people lying in hospital beds, uncared for, feeling that their lives means nothing because of all of the genteel and not-so-genteel ways in which that idea is communicated? How many people feel that they are simply a waste of space because they’re being pressured to choose the alternative of death?

In this kind of environment, no free choice is possible. And I think that the proponents of assisted suicide know that. I really do. In fact, I think that the very reason that people put assisted suicide on the table at all is that they know the kind of treatment in store for them if they become ill or disabled. It’s not really illness or disability they fear, because it’s entirely possible to live a very good life with illness and disability in it. What people fear most is being treated as though they have no dignity, as though they have no worth, as though their lives matter not at all. This is the deepest fear: to not matter. Even pain and death pale in the face of it.

I think that many people feel that they would rather die than to be treated as though they are worthless. And so they put forward legislation that will give them a way out. But they don’t realize that we can fight the idea that it’s better to be dead than ill or disabled — that we can react to it with outrage, and that we can create communities of support so that none of us ends up with our worst fears realized.

We have to. We can’t give up. We can’t give in to the idea that death is better than life. Because what is happening to Amanda Baggs should scare the hell out of all of us, and we need to take that fear and listen to what it’s telling us.

The reaction to fear can’t be surrender. Not when life is at stake.

References

Baggs, Amanda. “In My Language.” http://www.youtube.com/watch?v=JnylM1hI2jc. January 14, 2007. Accessed April 6, 2013.

youneedacat. “The weirdness of being told that the death alternative is the one I should consider.” http://youneedacat.tumblr.com/post/46816346769/the-weirdness-of-being-told-that-the-death-alternative. March 31, 2013. Accessed April 6, 2013.

youneedacat. “Are you at peace with your decision?” http://youneedacat.tumblr.com/post/47251303580/are-you-at-peace-with-your-decision. April 6, 2013. Accessed April 6, 2013.

© 2013 by Rachel Cohen-Rottenberg

Studies Prove It: Autism is Linked to Being a Carbon-Based Life Form
Nov 29th, 2012 by Rachel Cohen-Rottenberg

I’ve started compiling a list of all of the studies that link autism to… well, everything. I tend to find most of these studies unconvincing, to put it mildly, and when I look at them in list form, I have to remind myself that I’m not looking at works of satire. In fact, I have to remember that, at this absurd historical moment, a bunch of people actually get money for doing this kind of research, and that they are not embarrassed to associate their names with it.

Maybe it’s just me, but when I look over this list, all I can see is a whole lot of researchers jumping on the gravy train that is my neurology. Not that I’m insulted. In fact, I’m deeply honored that my neurology is a source of income for so many. After all, I wouldn’t want to see autism researchers lacking for food, shelter, and social status.

So carry on, people. Of course, at some point, you might consider making a living researching the sorts of things that would actually help people such as myself. Because, you see, when you reach my age, it just plain doesn’t matter whether you have autism because your mother sucked too many exhaust fumes when she was pregnant, or let you sit too close to the color TV, or was stressed out and depressed while you were in utero, or was abducted by little green men from Mars. (No, there hasn’t been a study linking autism to alien abductions. Yet.)

So if you all could do some studies on why typical folk have such a hard time providing access and employment to disabled people, or why they think you’re lying about your disability because you look perfectly normal, or why they won’t slow down for 10 seconds to talk to a person with a different communication profile, I’d be ever so grateful. These are the questions that plague me. Where autism comes from? Not so much.

Here is the list. I will be updating it for some time, apparently.

13 things ‘linked’ to autism
Age of mother affects child’s autism risk
Ambient Air Pollution and Autism in Los Angeles County, California
Amino-Acid Deficiency Found to Underlie Rare Form of Autism
An Immune Disorder at the Root of Autism
Autism and baby size linked
Autism and early exposure to traffic pollution linked
Autism And Pollution Study Links Autism With Prenatal Exposure To Traffic Pollution
Autism, asthma, inflammation, and the hygiene hypothesis
Autism Caused by Depression of Mothers?
Autism linked to difficult birth
Autism linked to gut bacteria, study finds
Autism Linked To Industrial Food Or Environment
Autism Linked To Moms’ Antidepressant Use
Autism Researchers Discover ‘Epigenetic’ Changes
Autism risk may be revealed in babies’ cries
AUTISM: Does head size provide the clue?
Birth Complications and Autism
Can Cell Phones Cause Autism?
Can low cholesterol cause autism?
Can We Blame Rain for the Autistic Brain?
Chemicals found in plastics linked to Autism
Children conceived in winter have a greater risk of autism, study finds
Children with autism have distinct facial features
Clinical research: Twin study links low birth weight to autism
Does Pet Shampoo Cause Autism? Let’s Hope Not…
Excessive Protein Synthesis Linked To Autistic-Like Behaviors
Extremely premature infants more likely to test positive for autism
Father’s Age Is Linked to Risk of Autism and Schizophrenia
Finger length related to autism!
Flu, fever linked with autism in pregnancy study
Head Size Tied to Regressive Autism in Boys
High Birth Weight in Children with ASD and Their Unaffected Siblings
Is Autism a Prenatal Parasite-Deficiency Syndrome?
Is Autism Statistically Linked to Early Non-Maternal Child Care?
Is excess folic acid supplementation a risk factor for autism?
IVF Linked to Autism, Israeli Study Suggests
Large study finds ‘baby sibs’ at high risk of autism
Later-born children at higher risk for autism
Link Found Between Child Prodigies and Autism
Living Near a Highway May Contribute to Autism Risk
Magnesium Deficiency and Autism
Major Stress During Pregnancy Linked To Autism
MAO-A Theory of Autism
Medical journal: Study linking autism, vaccines is ‘elaborate fraud’
Men who don’t find curvy women attractive ‘could father children with autism’
Mom’s Obesity, Diabetes Linked with Autism and Developmental Delays
Neuroscientist Links Autism with Internet Use
New Evidence Links Immune Irregularities to Autism, Mouse Study Suggests
New Study Implicates Environmental Factors in Autism
Newborn blood may reveal early immune signs of autism
NIH-funded Study Shows Pre-birth Brain Growth Problems Linked to Autism
Perinatal Risk Factors for Infantile Autism
Refrigerator Mothers
Researcher sees link between vitamin D, autism
Scientific Study Links Anti-depressants In Drinking Water To Autism
Scientists Find ‘Baffling’ Link between Autism and Vinyl Flooring
Scientists Find Link Between Autism and Brainwaves
Scientists Link Gene Mutation to Autism Risk
Severity of Autism Linked to Length of Pregnancy
Sibling spacing may be tied to autism risk
Study links autism, diabetes in pregnancy
Study links folic acid to lower autism risk
Study: Autism risk tied to mom’s obesity during pregnancy
Study finds new evidence that vitamin D decreases risk of autism in children
Top 10 Chemicals Most Likely to Cause Autism and Learning Disabilities
Tuna and autism for unborn child – link?
TV Implicated In Rise Of Autism
TV Really Might Cause Autism
Use of Birth Certificates to Examine Maternal Occupational Exposures and Autism Spectrum Disorders in Offspring
Wi-Fi linked to childhood autism
Women Abused as Children More Likely to Have Kids with Autism

© 2012 by Rachel Cohen-Rottenberg

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