Disability and Representation » Medical model of disability http://www.disabilityandrepresentation.com Changing the Cultural Conversation Tue, 22 Oct 2013 14:17:11 +0000 en-US hourly 1 http://wordpress.org/?v=3.7.1 But You Don’t Look Disabled! http://www.disabilityandrepresentation.com/2013/10/22/but-you-dont-look-disabled/ http://www.disabilityandrepresentation.com/2013/10/22/but-you-dont-look-disabled/#comments Tue, 22 Oct 2013 14:15:46 +0000 http://www.disabilityandrepresentation.com/?p=3682 but you don't look disabled[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

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Passing and Disability: Why Coming Out as Disabled Can Be So Difficult http://www.disabilityandrepresentation.com/2013/10/12/passing-and-disability/ http://www.disabilityandrepresentation.com/2013/10/12/passing-and-disability/#comments Sat, 12 Oct 2013 19:10:48 +0000 http://www.disabilityandrepresentation.com/?p=3634 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

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The Stories We Tell: Coming to Terms with PTSD http://www.disabilityandrepresentation.com/2013/10/05/the-stories-we-tell/ http://www.disabilityandrepresentation.com/2013/10/05/the-stories-we-tell/#comments Sat, 05 Oct 2013 18:03:00 +0000 http://www.disabilityandrepresentation.com/?p=3509 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:

DSCN0098[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

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To the International Paralympic Committee: Let Victoria Arlen Compete http://www.disabilityandrepresentation.com/2013/09/29/to-the-international-paralympic-committee-let-victoria-arlen-compete/ http://www.disabilityandrepresentation.com/2013/09/29/to-the-international-paralympic-committee-let-victoria-arlen-compete/#comments Sun, 29 Sep 2013 21:11:14 +0000 http://www.disabilityandrepresentation.com/?p=3489 According to a recent article in The New York Times, disabled swimmer Victoria Arlen has been barred from competing in the Paralympics on the grounds that her disability is not permanent.

In her early teens, Victoria spent three years coming in and out of consciousness. Her legs are now paralyzed. She experiences muscle spasms in her upper body. She lives with severe stomach pain. She has seizures.  Victoria was diagnosed with transverse myelitis and then given an additional diagnosis of acute disseminated encephalomyelitis (ADEM).

Now a high-level athlete, Victoria won four medals and set a world record at the Paralympics last summer. This year, however, she will not be competing in the world championships. The International Paralympic Committee’s Peter Van de Vliet sums up the committee’s decision:

“The million-dollar question is, Is this a permanent impairment?” he said. “The rules stipulate that only people with permanent impairments can compete, and the one thing the doctor couldn’t explain was whether this was a permanent impairment.”

All of the many things wrong with this picture fall into three main categories:

1. The committee is narrowly defining disability as a medical condition, with no understanding that it is also a social position. The medical-model view of disability is very outdated, and it goes against the core reason for the existence of the Paralymics.  If the point is to allow high-level athletes to compete because they are excluded from competing with able-bodied people, then the social model has to enter the picture. Can Victoria Arlen be competitive against able-bodied swimmers? Can she qualify for the Olympics according to able-bodied standards? No, she can’t. Who is the Paralympics for if not for a high-level disabled athlete like her?

2. The committee is adhering to a strict binary of disabled and non-disabled, when no such binary exists. Everyone has a body in a state of flux. At present, Victoria’s body is disabled. What is happening at present should be the only deciding factor — not what might happen in some mythic future. After all, who is to say that a cure for the condition of some other Paralympic athlete isn’t around the corner, and that Victoria Arlen’s condition will not become worse?

3. The committee is essentially asking Victoria Arlen whether she is “disabled enough,” when no such objective criteria exists. In many ways, the committee’s decision mirrors the controversy about whether Oscar Pistorius was too able-bodied to compete in the Olympics. To my mind, this is a very odd question to ask about any disabled person, but especially about someone with a very clear physical impairment. Oscar Pistorius is an amputee. Victoria Arlen’s legs are paralyzed. I fail to see how the possibility that Victoria’s body might one day be ambulatory generates sufficient ambiguity to override the fact that she currently cannot purposefully move her legs.

The only deciding factor should be whether Victoria Arlen is disabled now, which she clearly is. It’s absurd for disabled people to draw these kinds of lines and act to exclude one another based on outmoded and questionable criteria. When it comes to disability, it’s time for the Paralympics to get into the 21st century

© 2013 by Rachel Cohen-Rottenberg

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Doing Social Justice: Thoughts on Ableist Language and Why It Matters http://www.disabilityandrepresentation.com/2013/09/14/ableist-language/ http://www.disabilityandrepresentation.com/2013/09/14/ableist-language/#comments Sat, 14 Sep 2013 15:00:06 +0000 http://www.disabilityandrepresentation.com/?p=3281

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

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What It Means To Be A Help Object http://www.disabilityandrepresentation.com/2013/09/03/what-it-means-to-be-a-help-object/ http://www.disabilityandrepresentation.com/2013/09/03/what-it-means-to-be-a-help-object/#comments Tue, 03 Sep 2013 18:31:24 +0000 http://www.disabilityandrepresentation.com/?p=3077 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

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Disability, Cures, and Normalcy http://www.disabilityandrepresentation.com/2013/08/31/disability-cures-and-normalcy/ http://www.disabilityandrepresentation.com/2013/08/31/disability-cures-and-normalcy/#comments Sat, 31 Aug 2013 17:30:29 +0000 http://www.disabilityandrepresentation.com/?p=3051 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

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Updated Post: Just How Far We Are From Equality: The San Diego Museum of Man’s Access/ABILITY Exhibit http://www.disabilityandrepresentation.com/2013/06/28/just-how-far-we-are/ http://www.disabilityandrepresentation.com/2013/06/28/just-how-far-we-are/#comments Fri, 28 Jun 2013 16:41:13 +0000 http://www.disabilityandrepresentation.com/?p=2709 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

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My Body is Not Public Property: The Disability Version http://www.disabilityandrepresentation.com/2013/06/25/my-body-is-not-public-property-the-disability-version/ http://www.disabilityandrepresentation.com/2013/06/25/my-body-is-not-public-property-the-disability-version/#comments Tue, 25 Jun 2013 18:27:14 +0000 http://www.disabilityandrepresentation.com/?p=2691 Just a few days ago, I wrote a post about what a blessed relief it is have my cane as a visible marker of disability. After living my whole life with invisible disabilities, I am enjoying the fact that my subjective experience and my outward appearance are in greater harmony. As a highly visual person in a highly visual culture, I’ve found it wearying to navigate the ambiguity of being disabled but not looking disabled. The burden that has been lifted by using a cane has been immense.

One of the benefits of the visible marker is that my disability is right up front. People can either welcome me in or treat me as Other, but I know right away which one it will be. In the past, because I’ve tended to present as “normal” at first meeting, the pattern has been that people had an expectation of my normalcy, then they’d get to know me, then they’d see how atypical I really am, then they’d feel somehow defrauded (I knew you were different, but I didn’t know you were that different!), and then they’d walk away. I can’t tell you how many people over the years have gotten pissed off to my face because I didn’t fulfill their projected image of normalcy. It’s good to have a break from that.

But today, I had an experience of the other side of visible disability: the part where well-meaning people ask about your disability and try to help you not be disabled anymore. I had an interaction this morning that woke me up to how subtly it can happen and how quickly I have to be able to meet it and deflect it.

It’s foggy and cool outside today, and I love walking in this kind of weather, so I got up and out of the apartment early. After I’d run a couple of errands, I saw a guy about my age on the street asking for money. I stopped a minute to give him a couple of dollars. He had grey dredlocks and called himself “an old yogi.” He was very gentle in his manner.

I am always very cognizant of the dynamics of helping people on the street: the class difference, the fact that people are in an extremely vulnerable position, and the fear that they carry of not knowing how someone is going to react to them. So I come from a place of wanting to give respect in equal measure with food or money or clothing, because I figure that respect is in as short a supply as cash. But of course, the class and power divisions are still there, and today, they came back at me through my disability.

As soon as I stopped to give the old yogi money, he began to question me about my cane. The opening salvo was to ask whether I was using it as a temporary measure. The implied question was whether or not I am permanently disabled. I didn’t know how to answer that question, because I don’t know whether the problem with my hip will get better. So I told him that something was going on with my hip and that I wasn’t sure what it was.

All of you with visible disabilities are likely cringing at this point, because you know exactly what’s coming and can see very clearly where I stepped into the big bear trap: a perfect stranger was asking about my body, and I gave him information. I’m not exactly sure why I did. Part of it was that he seemed to be expressing concern and I felt appreciation for it; part of it was that it simply took me by surprise; part of it was that I have this impulse toward truth and accuracy and sometimes don’t keep my truth and accuracy to myself. In this case, in order to protect the boundaries around my own body and psyche, I should have simply said, “I’m not available to talk about my disability.”

But I didn’t. I just didn’t see what was coming until he said, “I was on a cane for awhile.” That’s when I thought, “Uh oh. Here comes the testimonial.” He proceeded to tell me how he did yoga and got off the cane, how the cane was a crutch that keeps your body from getting better, how a cane can become addictive, and how I should spend some money on some yoga classes and see whether I could clear up the problem myself. In other words, using a cane was a Bad Thing, and having a problem with my hip was a Bad Thing, and of course, I wanted advice on how to evade the Bad Thing.

I was really shaken by this interaction. On the one hand, I understand where the guy was coming from. The class division was there and it was complicated by gender: a man was asking for money from a woman. There was a power struggle of sorts, a struggle in which my disability became my point of vulnerability, despite — or perhaps because of — my class privilege. And there was also an emotional struggle, in which the old yogi wanted to feel the dignity of giving back, as a man and as someone in poverty. He didn’t just want to take. He wanted to help me, too. I saw all of that happen, and it’s difficult to feel angry about it, because at the end of the day, he’s still sitting on the street asking for money and I’m in my apartment with plenty of food and safety.

On the other hand: boundaries. In this case, there are two sets of boundaries that got broken. One set consists of the boundaries that ought to keep a man from asking about a woman’s body without knowing her well enough to make the asking appropriate. The other set consists of the boundaries that ought to keep a nondisabled person from asking about a disabled person’s body and offering advice. Leaving aside the gender issue, the message that I got was that the questions and advice about my disability were welcome.

That’s the part that really got me. There was absolutely no consciousness in the interaction that I might love my cane and that its being a crutch is a Good Thing. There is nothing wrong with a crutch if your leg feels unstable and you’d like to go for long walks anyway. There is nothing wrong with a crutch if it keeps you from falling down. There is nothing wrong with a crutch if it communicates that your body works differently from other bodies and that’s okay.

And of course, the questions were all about disability as a purely medical condition. There was no place in the interaction for disability as a social identity, as a source of pride, as something to make visible because it’s part of who you are. I was caught in the same place in which I’ve always been caught as a woman: If you don’t want the attention, why carry yourself with so much pride in your body? Why be so visible? Why ask for it?

And the answer is exactly the same: Being visible is not an invitation to intrusion. A woman who walks down the street in a bikini isn’t asking for leering commentary any more than a disabled person with a cane is asking for help and advice from a stranger. My body is not public property, not an opportunity for personal conversation, not a canvas upon which other people can paint their fears and power needs and good intentions.

Despite today’s interaction, I am not going to hide. In fact, I just purchased a bright red cane to go with my bright red sneakers. For the first time in my life, I want to stand out. For the first time in my life, I know that standing out doesn’t mean I’m asking for intrusion. It just means that I’m taking up my place on the earth just like everyone else.

So please remember: When I stand out, it doesn’t mean I’m asking for your opinion, your commentary, or your help. It means that I’m asking for your respect.

© 2013 by Rachel Cohen-Rottenberg

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Breaking News! Experts Say That Being Alive Causes Autism http://www.disabilityandrepresentation.com/2013/04/26/breaking-news-experts-say-that-being-alive-causes-autism/ http://www.disabilityandrepresentation.com/2013/04/26/breaking-news-experts-say-that-being-alive-causes-autism/#comments Fri, 26 Apr 2013 14:00:37 +0000 http://www.disabilityandrepresentation.com/?p=2421 (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

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