SIDEBAR
»
S
I
D
E
B
A
R
«
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

We Disabled Folk Have Everything to Offer the World — Except Normalcy
Oct 10th, 2013 by Rachel Cohen-Rottenberg

I have been feeling a lot of sadness these days. It’s almost a sad kind of wonder. I look back over my life from my perch here in my 50s, and I think about how differently my life has turned out from what others had planned for me — and from what I had planned for myself.

Part of what has sparked this nostalgia has been reconnecting with an old friend from high school. I find myself traveling back to when we last saw each other. We were 18. It’s been over 35 years — a whole lifetime. And I wonder at how young we were, how unformed we were, how we were barely out of childhood, and how we have aged and weathered so many things in the interim.

But mainly, I think about the difference between who I am now and who I was then. In some ways, I am still that innocent kid, with the Mensa-level IQ, and the acceptance letters from Ivy League schools, and the faith that my intelligence and my good heart would open doors and make my life the privileged haven everyone told me it would be.

Because yes, I grew up very privileged. White and solidly middle-class, I had the best of everything: the best schools, the best arts programs, the best neighborhood, and the best and highest of expectations. Home was a nightmare, but it was a nightmare that I knew would one day be over. I was not trapped in it. I had choices. I had a plan. I had an escape.

But I didn’t have as many choices as I thought I did. I didn’t use the word “disabled” back then, but even in high school, I knew that people could do things that I couldn’t do — and I knew that I understood things they could not see. I didn’t know how to define it. I didn’t understand all the neurological glitches and processing difficulties and unfiltered perception that made my life so much more work than I was perceiving in other people. But even in high school, I knew that my life would not be what I had planned, nor what my parents were planning. I knew there were worlds I could not navigate and had no interest in navigating. I knew that I was going in a different direction. I cried all the time.

Realizing that I have multiple disabilities here in the middle of my life has really been about a loss of privilege. I’ve been angry about it, and I’ve grieved it, but mainly, I think about how incredibly privileged I am to be grieving the loss of privilege. What does it say that I have had to adjust to what most people deal with in utero? I have railed against the loss of privilege with all manner of words that come down to Why Me? I only started moving on with my life when I could answer with Oh, for God’s sake. Why Not Me?

I still have so much privilege. I live in a great apartment in a secure building. I don’t worry about food or clothing or medicine. I have my husband with me and my kid less than a mile away.

And yet… What is it about being disabled that always brings up the words and yet?

Part of it is a lack of access. I was abundantly fortunate to have had a very good career for fifteen years. And then I left it to raise my kid, and by the time I was done, my disabilities were in full bloom, the time for passing had long since passed, and I could not find an accessible environment in which to work. I miss that. I miss the daily collaboration of work. I miss the routine. I miss the projects and the work friendships and the busyness of it. I miss the old identity. I miss the social respect.

But it isn’t just about access. Not exactly. It’s more a sense that the world wants something I can’t give it, no matter how hard I’ve tried. It’s not enough that I’m smart and good-hearted and hard working. The world wants me to be normal. That is the baseline. That is the condition under which everything else takes place. And I simply can’t do it. I never could do it. I tried very hard. And for awhile, I was able to compensate. But I’m not interested in compensating anymore. I’m interested in living comfortably in my body. That just isn’t possible when you’re compensating all the time.

So that kid, who thinks that her brilliance and lovingkindness are going to be just the ticket, is still very much a part of me. She’s still looking around, wondering why it doesn’t quite work that way. But there is also the adult, who knows that the gig was up a long time ago, and that it doesn’t matter how many of the trappings of normalcy I’ve acquired. I’m not normal. I will never be normal. I don’t ever want to be normal. Why would I want to aspire to a statistical construct created by 19th century eugenicists? Does that sound like a fun way to live?

I have so much to offer the world. And yet, I can’t give it what it wants more than anything: normalcy. So I seek out people who don’t care about normalcy. I serve people who don’t care about normalcy. I serve people in the park who are hungry and homeless — many of whom are disabled, and all of whom are way further to the right of the bell curve on non-normalcy than I am. I think that is one of the many things I love about what I do three days a week: I distribute lunch to people who don’t expect me to be normal, who aren’t judging how far I fall from it, and who really couldn’t care less whether I fulfill the ridiculous expectations of some fictional idea.

So, oddly enough, and despite the undeniable privilege I still enjoy, I have found a source of connection among the most dispossessed people in my community. I work to make my privilege work for them. I do my best to take my privilege and wield it for the sake of people who are about as far from privilege as one can get. Right now, that’s the best I can do.

© 2013 by Rachel Cohen-Rottenberg

Just a Drop in the Bucket
Oct 9th, 2013 by Rachel Cohen-Rottenberg

[The photograph shows ten open paper bags, standing upright, with five in the front and five in the back, against a white wall with grey shadow.]

Today, when I was passing out lunches in the park, one of the people there said to me, “It’s because of people like you that we’ll never starve.”

I was so taken aback. Sometimes, I only see how huge and systemic the problems are. I see lack of accessible housing, lack of accessible work places, lack of welcoming social structures, and lack of decent medical care as the root causes of so much homelessness amongst disabled people. And I see all of the systemic bigotries and inequalities and greed and broken social programs that are behind hunger and homelessness for so many people who are nondisabled.

And when I see all of that, I think that what I’m doing is just a drop in the bucket. I’m giving out 30 lunches a day, three days a week, when there are 1500 people living on the street in Santa Cruz alone, and many, many more going without food. If you think about what is happening across the country, and in how many ways this scenario is repeated in nearly every city, you see just how huge the problems are. In many ways, what I do really is just a drop in the bucket.

And then I remember that every person is a universe all their own, and that even saving one person from hunger or despair for one day is everything to that person. Everything. As the Talmud says:

“For this reason man was created alone, to teach you that whoever destroys a single soul, he is guilty as though he had destroyed a complete world; and whoever preserves a single soul, it is as though he had preserved a whole world.” (Sandhedrin 37a).

So I keep handing out food to people who see God in a brown paper bag and think I’m an angel, when the bag just contains a peanut butter sandwich, some cookies, and some fruit, and I am a very flawed and struggling person. But I try to channel the love that comes from The One Above, because I know that it is a balm to the soul. For people who have no refuge, the respect and kindness of others are reminders that they deserve justice in this world – including the ability to eat, to sleep, and to occupy space without fear.

Food feeds the belly. And kindness feeds the soul. And love provides a refuge, however fleeting.

And so I continue.

© 2013 by Rachel Cohen-Rottenberg

This Week in the Park: How Our Fellow Human Beings are Living
Oct 8th, 2013 by Rachel Cohen-Rottenberg

As I go out and distribute food to people living in the park, I see and hear things that nearly break me apart. Here’s what I’ve seen and heard over the past week. This is how our fellow human beings are living.

An elderly amputee stops me to talk about shooting squirrels for food.

A vet in his 60s tells me that a blind man is losing weight and coughing up blood. The man moans all night. He is dying. Outside. Alone.

Two men sitting on a bench tell me that they have had nothing but water for two days.

Two women are lying on a blanket together, comforting each other. One has a black eye.

A squad car arrives in the meadow where homeless people congregate and sleep during the day. A police officer and two park rangers are telling a group of people to move on. The group consists of men and women of all ages, including an elderly woman. They might have been drinking or smoking, which are forbidden in the park. The park rangers are often checking to see what is going on in the meadow.

People in the group are screaming at the police officer and the rangers. Some are gathering their possessions and dragging them away. On the pedestrian bridge above, people with food and clothing and shelter are staring at and mocking the homeless folks being dispersed below.

I maintain very clear boundaries when I am in the park. If I see the police or the park rangers talking to people, I hang back. They have a job to do and I give them space to do it. Before I go over to people and offer food, I observe them very carefully. If I sense anything awry, I move on. If people scream at me, I don’t get into it. If other people scream at them, I just observe and continue on.

My job is to offer food, kindness, respect, and courtesy to people who are hungry and homeless. I see so much now that I never saw before. Most people don’t see it. I didn’t see it. Now I can’t unsee it. I don’t want to unsee it, ever.

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

Why So Many Fail to Understand Systemic Oppression
Sep 29th, 2013 by Rachel Cohen-Rottenberg

I was recently in a discussion about the ways in which people of color are disproportionately targeted by the police (think: stop-and-frisk, among other rights violations), disproportionately incarcerated, and disproportionately imprisoned for long stretches. As is often the case in these kinds of discussions, someone came blundering in with a “solution” — the “solution” being that people of color just need to be compliant with police officers and not do anything at all that could possibly be construed as suspicious or alarming. In other words, people of color simply had to act “normal” and all would be well.

I kept reading those words over and over, because I found them so shocking. It wasn’t just that the ideas were wrong — that they evinced an ignorance of racism and an idealized sense of control. It’s that they were based on an outlook that I once believed was grounded in fact: that society is “just” and that all I had to do to be safe was to do everything “right.”

That was a lifetime ago. At some point, I realized that there was no way to do it “right” because, in the eyes of the society in which I live, I am already seen as “wrong.” This assumption of wrongness is why marginalized people get the attention of the police, not to mention other authority figures, for driving while black, for walking while trans, for standing while disabled. We’re already considered “wrong” in the first place.

Some people’s bodies are themselves considered provoking. Not our intentions. Not our attitudes. Not our actions. OUR BODIES. To understand this very basic fact goes against the whole notion that the society one lives in is just — that the good are rewarded and that the guilty are punished. It’s deeply terrifying to realize how truly irrational people are when it comes to the arbitrary meanings they place on human bodies. It means that entire systems are based on completely arbitrary and irrational standards. It goes against the whole Western notion that humans are rational and enlightened beings.

It’s a very hard thing to wrap your mind around until it comes your way. And even when it does come your way, it’s still something that is difficult to face. This is one of the reasons that even people inside marginalized groups can fail to grasp the systemic injustices directed against their bodies. Or if they do grasp it, they can fail to understand the irrationality of the hatred directed toward other people’s bodies. So you find gay and lesbian people who are racist and transphobic, and you find people of color who are homophobic and ableist, and you find transgender people who are ageist and fatphobic, and you find disabled people who are misogynist and classist. Depending on who you talk to, you’ll find a multitude of permutations of all of these bigotries, including the horrifying specter of internalized hatred against one’s own body.

To realize that these valuations are simply arbitrary — that there is no good reason at all to suspect a body just for being a body — means to recognize that we are all at risk. Stigma is a moveable feast. It is mercilessly easy to move from a privileged category to a stigmatized category. Just ask anyone who has ever been diagnosed with a disability after living with the privileges of able-bodiedness, or anyone who has ever become fat after being thin, or anyone who has become old after a lifetime of looking youthful. The whole notion that the society is constructed along rational lines comes crashing down. And then you have to reconstruct your sense of how it works, piece by piece.

You’ll find other people who have woken up and found a new way of seeing. But you’ll never really believe again that the world you live in is just.

© 2013 by Rachel Cohen-Rottenberg

Disability as the Ultimate Insult
Sep 16th, 2013 by Rachel Cohen-Rottenberg

I heard a disability slur the other day that I’d never run across before. It was in a social justice context (surprise surprise), and one commenter said to another: “If you really believe that, you probably shouldn’t go out without a carer.”

Ah, yes. It’s the ultimate insult: Being disabled and needing a caregiver. Wow. Is that the hierarchy in which most people live? Yes. Could the hatred be any clearer? I don’t think so. That kind of thinking speaks volumes about how even the most enlightened radical folk see disabled people — which makes such radical folk not radical at all, but really quite mainstream.

I am always pushing back against this kind of talk. I am always asking for people to stop using disability slurs. But on days like today, I wonder whether I shouldn’t just be quiet and let people have at it. At least, that way, the degree to which they despise us would be out in the open.

Perhaps I should just collect all of these instances and publish them. That way, no one can say, “Oh, no, no, no, no. Don’t be ridiculous. There is no such thing as disability hatred.”

© 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

Homelessness is a Disability Issue
Sep 13th, 2013 by Rachel Cohen-Rottenberg

“Nearly all of the long-term homeless have tenuous family ties and some kind of disability, whether it is a drug or alcohol addiction, a mental illness, or a physical handicap.” — Dennis Culhane, 2010

I spend a fair amount of time these days talking with people who live on the street. I distribute bag lunches three times a week in San Lorenzo Park and on Pacific Avenue in Santa Cruz. I stop and chat with people, and I listen to their stories. People are getting to know me now, and they say hello to me at the drugstore and at the bus station and on the street. Some of them I consider friends; others are just folks I exchange a few words with; still others say very little at all.

The number of disabled people living on the street in Santa Cruz is staggering. Most of the people I talk to are disabled. Either I see their disabilities at first glance or I hear about them when people talk about their lives. The most obvious are the people with visible disabilities: people who use wheelchairs but can only move them by shuffling their feet, people who need wheelchairs but can’t afford them, people who use walkers and push chairs on which all of their belongings are piled, people who are blind but have no cane and no guide dog. Then there are the people who are mentally ill: the ones who talk to the voices they hear, the vets with PTSD, the men and women laboring under severe depression. And then there are the ones with invisible disabilities: the middle-aged man who stims and rocks and self-talks at the bus stop, the older fellow with leg and back injuries, the young man who understands everything but has trouble speaking in words. And of course, there are the alcoholics and the drug addicts, including the ones who line up at the methadone clinic.

When we talk about homelessness, we don’t often talk about the sheer numbers of disabled people living without shelter. And when we talk about disability, we don’t often talk about how many disabled people end up on the street. We don’t talk enough about the ways in which disability puts people at risk of homelessness and about the ways in which homelessness puts people at risk of disability. But think about the level of physical vulnerability involved — the lack of medical care, the lack of decent food, the sexual and physical assaults, the constant vigilance — and it’s not difficult to see how people become disabled on the street. If you didn’t have PTSD before homelessness, you’ll probably have it once you’ve become homeless. If you didn’t have an alcohol problem before you became homeless, you might acquire one just to be able to sleep. If you weren’t physically disabled before you became homeless, you might become so through assault or untended injury. And if you weren’t ill before you became homeless, you might easily become so through chronic lack of sleep.

In Santa Cruz, it is illegal to sleep outdoors between 11 pm and 8:30 am, and in the library at any time. How are people supposed to find their way out of homelessness if they can’t even sleep? It boggles the mind.

And how can anyone can say that all people need to do is to quit being so lazy and get a job? Fine. You want people to quit sleeping outdoors? Find people a job that accommodates their disabilities. Locate accessible housing. Get people the assistive devices they need. Help people hire a support staff. I’m sure that any one of the people I’ve spoken to would be only too happy to sign right up.

The need out there is so great. Our disabled brothers and sisters are crying out for justice.

References

Culhane, Dennis. “Five Myths About America’s Homeless.” The Washington Post, July 11, 2010. Accessed September 12, 2013. http://www.washingtonpost.com/wp-dyn/content/article/2010/07/09/AR2010070902357.html.

© 2013 by Rachel Cohen-Rottenberg

Holding Fast To My Own Experience
Sep 12th, 2013 by Rachel Cohen-Rottenberg

I’ve been wanting to write this post for a long time, but it’s taken me awhile to get enough distance on the whole issue to be able to write about it out of power rather than out of fear.

As many of you know, I’ve done a lot of work critiquing research into autism and empathy — both in my academic life and online at my Autism and Empathy site. One of the driving factors behind this work was an experience I’ve been afraid to talk about. To put it as briefly as possible: the research conclusions surrounding an alleged lack of empathy in autistic people made me question when I am really empathetic at all, and they filled me with doubt and dread for a very long time.

I’ve spent much of my adult life describing myself as an empath, and I have always read emotional and social process very well. But then my autism diagnosis came along and voila! I was supposed to be deficient in empathy. In fact, I read study, after study, after study showing that autistic people have an empathy disorder, and the cold voices of authority started getting into my head. That was bad. Very bad. What Sartre wrote about the Jewish people applied equally well to me as an individual:

“They have allowed themselves to be poisoned by the stereotype that others have of them, and they live in fear that their acts will correspond to this stereotype.” (Sartre 1960, 95)

“Poisoned” is right. I was sick with fear and doubt. A year or two ago, I finally got up the courage to check the whole empathy question out with the people who know me best: my husband and my kid. I started with the kid, who was still a teenager at the time. I said, “Ash, do you think I’m empathetic?”

Ash looked at me in a way that only teenagers can look at mothers: with a mixture of impatience, love, and something bordering on anger for wasting their time. With an eye roll, my kid spoke the following immortal words;

“Mom. YES. You are very empathetic. Exhibit A: MY ENTIRE LIFE.”

I felt relieved. Later in the evening, after my husband came home, I related my conversation with Ash and poured out my relief as he made himself toast at the kitchen counter. His response? He was uncharacteristically brief. “Good,” he said. “No need to ask this question again.”

Somehow, those two conversations allayed my doubts. I couldn’t write about it for a long time, though. I couldn’t acknowledge publicly the kinds of doubt the research had raised in me. But I can do so now, because I’ve come to understand that I wasn’t just having an experience of personal insecurity. I’ve come to realize that this kind of doubt is common for people in all kinds of marginalized groups. I’ve finally seen the ways in which those with cultural authority speak for us, ask us to prove our experience with numbers and graphs and research papers, and then tell us that our experience means nothing because it doesn’t match their findings.

The rather obvious conclusion to draw from research findings that don’t match reality is that the research findings are wrong, but of course, that rarely happens. The research findings take on the authority of truth, and the experiences of people who actually live in the bodies being researched mean very little.

Put another way: The truth means very little. The story that is constructed, however, means everything, and we find ourselves spending massive amounts of energy arguing against the story, both within ourselves and with everyone else. Patricia Williams writes about studies on race in a way that rings true for me as I recall all the many hours I’ve spent refuting autism research:

“One of the great difficulties of pseudo-science is that it is so hard to refute just by saying it isn’t so. The logical structure — if not the substance — of pseudo-science posits what purports to be fact; it requires counter-fact to make counter-arguments. Black people find themselves responding endlessly to such studies before we can be heard on any other subject; we must credentialize ourselves as number-crunching social scientists quickly in order to be seen as even minimally intelligent… Real numbers, real science — it’s what school teaches us to revere. And it makes anyone who knows the great messy, unprovable contrary, who knows the indecipherable complexity of black or white people, who knows the reality and the potential of all humanity — us silly egalitarians — it makes us unintelligent, uninformed, powerless, and naïve.” (Williams 1998, 49-50)

“Real numbers, real science” — how do these things even begin to compete with the delicious, messy, complex, living, breathing nature of human experience? They don’t. They can’t. They can never even come close. They only put us into hierarchies: black/white, normal/abnormal, able/disabled, and so many others.

Do I regret that I spent so many hours critiquing the research? Do I wish I’d said instead, “To hell with your studies, to hell with your questionnaires, to hell with the careers you’ve built on the backs of people like me”? In some ways, yes. But in other ways, I am glad to have been able to spend some time in the belly of the monster, because I got to know its way of being very, very well and I got to see how very barren the belly is.

The monster doesn’t scare me anymore. It’s been banished. And when people try to raise the monster back up, I find myself wondering why they’re wasting their time believing in an apparition.

References

Sartre, Jean-Paul. Anti-Semite and Jew. New York, NY: Grove Press, 1960.

Williams, Patricia. Seeing a Color-Blind Future: The Paradox of Race. New York, NY: Farrar, Strauss, and Giroux, 1998.

© 2013 by Rachel Cohen-Rottenberg

»  Substance:WordPress   »  Style:Ahren Ahimsa