Disability and Representation

Changing the Cultural Conversation

To the International Paralympic Committee: Let Victoria Arlen Compete

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 The medical-model view of disability is very outdated, and it goes against the core reason for the existence of the Paralymics.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


Doing Social Justice: Thoughts on Ableist Language and Why It Matters

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.


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


On the Murder of a Disabled Daughter

On August 19, an 88-year-old Oakland man named William Roberts killed his 57-year-old quadriplegic daughter Marion Roberts and then turned the gun on himself. Information about the case has been sparse, but it’s clear that Mr. Roberts was terminally ill with liver cancer and lung disease, and that he had cared for his daughter for over 25 years — first with his wife and then with his son. His daughter had become quadriplegic and had sustained traumatic brain injury from a fall in 1987. She needed assistance with all of the basic tasks of life, and it appears that she received that assistance with a great deal of love.

So what would drive a man to commit such an act at the end of his life?

I think about these kinds of issues a great deal. When a healthy parent, in the prime of life, kills a disabled child, my immediate response is to condemn the perpetrator. I do not want to hear about a lack of services, or about the perpetrator’s fear and hardships. No. You bring a child into the world and you are responsible for protecting the life of that child. That is my immediate response.

So I was surprised, as I read the story of William Roberts and Marion Roberts, that my response was not nearly so visceral. The gating issue, for me, was Mr. Robert’s terminal illness. His impending death seems to have been the motivator here, not his daughter’s disability. I see no evidence that he killed her because he wanted a “normal” life, or because he resented having a disabled daughter, or because he thought life had done him wrong. After all, he had cared for her for 25 years — into his 60s, 70s, and 80s.

I don’t know the man or the family, but it is possible that William Roberts killed his daughter because he was dying and he was terrified of leaving her in the hands of strangers. This is a fear that afflicts a great many parents of severely disabled children. And he had good reason to be terrified.  His daughter was likely headed straight for substandard care in the disability gulag. Marion’s brother Thomas helped with her care, but it appears that the bulk of the caregiving fell on the father and that he was frightened about his increasing inability to care for her. Who knows whether anyone had stepped up to reassure him that they would be there after he died? Or whether he could trust those assurances even if they had come?

I’m beginning to realize the necessity of separating the responses to these stories — which inevitably follow the tired and bigoted logic of “disabled people are suffering and the parent/caregivers are putting them out of their misery” — from what might have been going on for the people involved. I don’t think that William Roberts killed his daughter because he thought she was suffering in the here and now. In fact, there is no evidence that she was suffering in the here and now, and there is no evidence that he thought she was. I think it’s possible that he killed her to prevent her from suffering abuse, neglect, loneliness, and indignity at the hands of uncaring strangers after he died.

The man was faced with an impossible choice on his daughter’s behalf: What is better? Death or hell? That someone who spent his elder years caring for his daughter would ultimately take her life (and his own) says far more about the world we live in than it says about him. I feel for this man in a way that I don’t usually feel for people who commit these murders. There was no good ethical choice here because the world didn’t leave him with one.

Is murdering your child an ethical choice? No. I can’t see how that’s arguable, ever.

Is leaving your adult child to be warehoused in hell an ethical choice? No. I can’t see how that’s arguable, ever.

The absolute lack of an ethical choice is not on William Roberts. It’s on the world.

To me, this is very different from a healthy person in the prime of life who kills a child and ends up being excused because they couldn’t get proper support services. Bullshit to that. Not getting proper support services while you’re in the prime of life is a very different thing from being tortured by what will happen after your death when your death is clearly around the corner. This man spent 25 years caring for his daughter and, by all accounts, did an outstanding job. His worry was not about a lack of support services when he was still alive. He could make up for that lack. But after he was dead — what then?

As I age, my greatest fear is to fall into the hands of strangers for my care. I do not fear pain, or further disability, or even death as much as I fear entering the medical system on my own. It is my worst nightmare. I think that it was likely William Roberts’ worst nightmare for his daughter.

Do I condone what William Roberts did? No. I don’t. A murder-suicide is ghastly. I don’t consider it a noble act.

Do I condone the unconscionable choice the world gave William Roberts? No. I don’t. I grieve for a world in which death or abandonment into hell are the choices people are given.

If my condemnation is going to fall, I’m going to let it fall on a world that creates these unconscionable choices.

© 2013 by Rachel Cohen-Rottenberg


Getting Beyond Etc. — A Short Response to Andrea Smith’s The Problem with “Privilege”

There are many good things to say about Andrea Smith’s piece The Problem with “Privilege.” She is absolutely right that to effect systemic change, we must get past the point of self-reflection on privilege, confessions of privilege, and ranking of privilege. She is right that we have to start working to dismantle privilege in all of the spaces we create and in all of the systems in which we are complicit.

But I have a serious problem with an otherwise excellent intersectional analysis: It mentions disability precisely once.

I begin articles like this one with great hope that disability will be integrated into the analysis — only to find, with great disappointment, that disability seems to merit a mere mention (if that). It’s a depressingly recurrent pattern. It often leaves me wondering whether to engage the author’s other arguments, or to simply leave the discussion, secure in the knowledge that, once again, I have not really been invited in.

One of the early warning signs of trouble ahead is Smith’s listing of oppressions under the “gender/race/sexuality/class/etc.” heading (Smith 2013). I cannot exaggerate how much I detest listing oppressions in this way. My friends and I are not an “etc.” My friends and I are disabled. When Smith does not explicitly incorporate this category into an analysis of the colonized subject, she has just done the very same thing that she is arguing against: constituting herself against an imagined Other.

The subject of which she speaks is not disabled. Like the White subject who has to be “educated” about race, the subjects of Smith’s piece have to “educate ourselves on issues in which our politics and praxis were particularly problematic: disability, anti-Black racism, settler colonialism, Zionism and anti-Arab racism, transphobia, and many others” (Smith 2013). But to whom does the word “ourselves” refer? Who is inside that group? Who is outside? By implication, most of the people on the outside are the ones consigned to a handy category called “etc.” about whom we have to “educate ourselves.”

Despite the us/them division thus evoked, we folks in the “etc.” category are already here, hidden in plain sight.

Please start talking about us as though we are you. Because we are.

Please start talking about us as though we have struggled for generations inside of our own civil rights movements. Because we have.

Please start talking about us as though our oppression winds its way through every other oppression under which people labor. Because it does.

And please start talking about us as though we merit the same attention as any other group of dehumanized, Othered folk. Because we do.


Smith, Andrea. “The Problem with “Privilege.” Andrea 366. August 14, 2013. Accessed August 29, 2013. http://andrea366.wordpress.com/2013/08/14/the-problem-with-privilege-by-andrea-smith/.

© 2013 by Rachel Cohen-Rottenberg


For My Crip Body: A Love Song

For my crip body with its aching hips

the unexpected pain

that radiates into belly and legs and spine

the signals that suddenly don’t reach knees


For this body, I offer praise upon praise.


For the exhaustion of ears that cannot filter

one sound from another

words of laughter, anger, boredom, joy

fragments of everyday stories

talk about children and weather and

racism and baseball


all equally embraced and resisted

by a mind that doesn’t know

what background noise

even means


For this body, I sing halleluyah.


For watching your speech form words in my head

for reading the words in an endless stream

for inscribing my words on the parchment of my mind

for forming painstaking speech out of just the right ones

just as you’ve started talking about something else


For this body, I give thanks.


For the tenacity of thought

that hikes through canyons and across

winding trails

searching for something new in the


at 3 o’clock in the morning when

all I want to do is, please God, let me sleep


For this body,

I pour out my love.


For the days that I cannot find words

for the days that the colors won’t translate

for the days that the verbal torrents come

and my words somersault and backflip

and wind in circles around themselves


For the days I long to talk like you


like you, whose thoughts become speech

like arrows that never fail to find their mark,

effortlessly, it seems,

while you are doing ten other things

as though it were nothing

as though it were the easiest thing ever


Before this body, my body, I stand in awe.


Does it surprise you

that I praise this body?

Does it surprise you that I love it so?


I will not hate this body my mother gave me

this body that that caresses, that comforts, that reassures,

that sustains other bodies

that bore exquisite life.


Why should I cast it out of the circle of love?


My body fights, it curses, it cries

it pours out words of outrage and grief and hope.


Why should I not hold it close?


This body

My body

The one you call broken

The one I have always known.


© 2013 by Rachel Cohen-Rottenberg


Drunk, But With a Story to Tell: Just Another Day in the Crip Section of the Bus

So this morning, I was riding the Santa Cruz Metro bus to Live Oak when a woman tried to get on without paying the full fare. She told the bus driver she had only 50 cents. He told her she couldn’t board. She told him that she had to go and get her check. He told her she couldn’t board. She offered to pay double the fare tomorrow. He told her she couldn’t board.

I felt so badly for the woman that I offered to pay her fare. Of course, she was pleased – perhaps a little too pleased. She immediately ran over to me and said, “Thank you, thank you, thank you!” and hugged and kissed me. I could smell the alcohol on her breath.

After she paid her fare, she sat next to me in the accessible section and hugged me again. And again. And again.

I have a very difficult time talking to people when they’re drunk – unless of course I’m drunk, which I wasn’t, because it was 11:30 in the morning and, besides, I don’t drink. But the woman was really very sweet, and we had a pleasant conversation, which was punctuated by many pats on my knee and a few more hugs. And then, because she was curious and had very little verbal self-control, she asked why I use a cane.

I was in a generous mood, so I told her. To my surprise, she did not respond by telling me how I could cure my hip with prayer, yoga, or herbal remedies. Instead, she lifted up her shirt and showed me – oh my God — a partially healed knife wound in her abdomen.

I didn’t have time to feel cranky about the fact that she’d only asked me about my hip so that she could show me her wound. I was too busy listening to the story she told about how she’d gotten it. The story didn’t make a lot of sense, but from what I could piece together, she had been tutoring a woman’s son, and the woman came in and got angry and stabbed her. Somehow, in addition to the knife wound, she also sustained a back injury and ended up with two titanium plates holding her spine together.

On a normal day, I’m tongue-tied with drunk talkative people, but this story put me way into the zone of I have no idea what to say and never will. So I attached myself to the one point of commonality I could find.

I said, I have a titanium plate, too — in my neck! I have no idea why. I just needed to say something. Anything – other than, Oh my God oh my God oh my God.

She high-fived me, and my stop came up soon after. She hugged me again and promised to pay my fare next time.

Life is nothing if not interesting.

© 2013 by Rachel Cohen-Rottenberg


Why This Disabled Woman No Longer Identifies as a Feminist

I became a feminist in 1972. Back then, it was still called “Women’s Lib,” sometimes by other feminists (cringe), and sometimes by anti-feminists (usually with a dismissive sneer). My father described me as being on “a Women’s Lib kick” for wanting to stay unmarried into my 20s, go away to college, and work. Judging by my aims at the time, you can see how early this feminism was.

It pains me to say that I no longer identify as a feminist.

It’s not that I’ve left behind the principles of feminism. Not at all. I’m not dismissing feminism or the feminist movement. I’m not anti-feminist. I’m deeply supportive of the principles of feminism and I will continue to work on behalf of them. But it’s not going to happen inside the movement.

Inside feminism, I’m marginalized at best. Usually, I’m invisible. I can’t stay, because staying is painful.

It took me awhile to figure this out. I was involved in a lot of different kinds of feminist work: agitating and getting in the trenches against rape and domestic violence, doing work in support of women of color and homeless women, campaigning for reproductive choice… you get the idea. I raised my genderqueer kid, who identified as female in childhood, in an all-women’s and girls’ dojo and taught that kid to kick the ass of anyone who messed with them.

But all along, something was missing. Some of it was obvious from the beginning: lots of foregrounding of whiteness, lots of talk about middle-class educated women, lots of talk about being competitive and ambitious and accomplished. I could never understand it. Down at the local Safeway, I’d talk with homeless women panhandling with their kids (sometimes white women and sometimes women of color), and when I’d get home, I’d find letters in the mail from feminist organizations about how middle-class educated white women just couldn’t seem to find their ways into the executive suite. I found it, well, obnoxious, and I used to send off letters telling people so. And much of the time, the response was along the lines of, “What you have to say is SO important. We’re getting there! Just you wait and see!”

The last time I wrote one of those letters was around 1993. For some sense of how far we haven’t come, take a look at Syreeta’s What we don’t talk about when we talk about Mommy Wars and Jessie-Lane Metz’s Ally-Phobia: On the Trayvon Martin Ruling, White Feminism, and the Worst of Best Intentions, both published this month.

So many feminists are still having trouble talking about racism. But truthfully, I’d settle for feminists talking about disability really, really poorly because, at this point, so few feminists consider disability at all.

Now before you jump in and say, “Oh, no, no, Rachel. I’m a feminist and I’M NOT LIKE THAT,” rest assured that I’m aware of feminists who are taking intersectionality seriously. I see you there. I do. But unfortunately, you are way too few and far between.

I spend a lot of time reading intersectional analyses. I used to go into them with a certain amount of glee, thinking, “All right! Finally! Disability is on the table!” I am no longer so naive. When feminism was just about gender, it was bad enough. Single-issue politics have never made a lot of sense to me. How can an experience of gender be divorced from an experience of anything else that comes with being in a human body? I understand the need to focus on gender issues, but that has to be reflected through a number of other prisms. Otherwise, you default to the culturally invisible prism: cis-gendered, able-bodied, normatively sized, middle-class, white Anglo-Saxon Protestant women. I am so done with that.

But what really, really drives me to bitter tears and raging inside my head is when people are all INTERSECTIONALITY FOREVER and WE’RE NOT SINGLE ISSUE FEMINISTS and WE’RE INCLUSIVE OF EVERYBODY and they chronically leave out disability from the analysis. And then when I mention the omission, I am met with silence (on a good day) and hostility (on a needlessly crappy one). The result is only more bitter tears and more raging inside my head.

It’s not that we have to all talk about all oppressions all the time. That would make it impossible to write an article or have a conversation and stay on point. But so often, I see the following pattern:

1. Writer composes an intersectional analysis that brings together race, class, and gender.

Okay. We’re good, though I’m still wishing that the analysis will be expanded.

2. Writer mentions that she is aware of multiple other forms of oppression but simply can’t speak to them all without losing the focus of the piece.

Fine. I respect any writer’s need to stay on point.

3. Writer mentions those multiple other forms of oppression, just to show that she is not ignoring other oppressed people. This is how so many of these lists go:

They almost always include sexual orientation.

On a good day, they include transgender people, people of non-normative sizes, and ethnic and religious minorities.

Once in a blue moon, the word genderqueer or non-binary or intersex appears.

If I’m really lucky, I’ll see the word disability. Usually, it disappears into the mist of phrases like “and all other oppressions.”

I get why this is happening. Feminism doesn’t know WTF to do with disability, because disability throws a huge monkey wrench into the gears of the feminist notion that we’re supposed to be strong, independent, and accomplished beings, healthy and full of power. Great! What about the women with disabilities for whom going to the grocery store takes a profound amount of energy? What about women whose bodies are weak? What about women who rely upon others for assistance with basic tasks? What about women in constant pain? What about women incarcerated in nursing homes and mental institutions? Where do they fit into your dream of the strong, independent, accomplished woman?

They don’t. WE DON’T.

What so many able-bodied feminists don’t get is how profound an experience disability is. I’m not just talking about a profound physical experience. I’m talking about a profound social and political experience. I venture out and I feel like I’m in a separate world, divided from “normal” people by a thin but unmistakeable membrane. In my very friendly and diverse city, I look out and see people of different races and ethnicities walking together on the sidewalk, or shopping, or having lunch. But when I see disabled people, they are usually walking or rolling alone. And if they’re not alone, they’re with a support person or a family member. I rarely see wheelchair users chatting it up with people who walk on two legs. I rarely see cognitively or intellectually disabled people integrated into social settings with nondisabled people. I’m painfully aware of how many people are fine with me as long as I can keep up with their able-bodied standards, and much less fine with me when I actually need something.

So many of you really have no idea of how rampant the discrimination is. You have no idea that disabled women are routinely denied fertility treatments and can be sterilized without their consent. You have no idea that disabled people are at very high risk of losing custody of their children. You have no idea that women with disabilities experience a much higher rate of domestic violence than nondisabled women or that the assault rate for adults with developmental disabilities is 4 to 10 times higher than for people without developmental disabilities. You have no idea that over 25% of people with disabilities live in poverty. You have no idea that the ADA hasn’t solved everything and that disabled people are still kept out of public places, still face discrimination in employment, and are still treated like second-class citizens undeserving of rights.

So many of you aren’t even thinking about disabled people when you casually throw words into your social justice rhetoric like crazy, insane, moronic, idiotic, and lame to describe ideas you do not like.

So many of you have no idea that the civil rights of disabled people are being violated every damned day only because they are disabled.

So many of you have no idea that disability is a civil rights issue AT ALL.

I’ve had people tell me that I should stay inside feminism and fight the good fight. I’ve been told that nothing will change if I leave. I’ve been told that I’m just giving up too soon (although I have trouble believing that 40 years is too soon). But this kind of logic makes no sense to me. The message is, “Stay in a movement in which you’re invisible, and keep talking about how you’re invisible, so that maybe someday, you won’t be invisible.” But that just turns the entire issue on its head. It becomes all about me and what I’m doing, and not about feminism and what it’s doing.

I don’t need to solve the ableism in the movement. It’s not my job. It’s the job of my nondisabled sisters who haven’t begun to address their own their own fears and their own omissions.

I shouldn’t have to remain inside a movement in which I’m nearly invisible as the price of getting people to listen to me. I’m still writing. I’m still speaking up. I haven’t gone anywhere. 

The disability rights movement is decades old. Educate yourselves. Talk to us. Think about us as your audience. Stop ignoring us. That’s all I ask.

© 2013 by Rachel Cohen-Rottenberg


Breaking News! Experts Say That Being Alive Causes Autism

(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


I Am So Sick Of Autism

Yes, I’m sick of autism.

No, I’m not sick of Autism the Condition. That I can live with, although it’s a complete pain in the ass sometimes. But what isn’t?

So that’s not what I mean. I’m talking about everything that isn’t actually the condition:

Autism The Event.

Autism the Tragedy.

Autism the Gift.

Autism The Epidemic.

Autism the Blessing.

Autism the Puzzle.

Autism the Next Step in Human Evolution.

Autism the Reason to Pound People Over the Head Because My Life Sucks Worse Than Yours.

When it comes down to it, what am I really sick of? I’ll tell you: I’m sick of autism The Condition That Must Be Interpreted.

Do we really need one more study about what causes autism? Do we really need one more article about how people with autism rock your socks off? Can we stop with the inspirational memes about autistic geniuses Who Overcame The Odds And Beat Autism Into The Ground? Can we call a moratorium on posts about how autism is an Epidemic of Tragic Proportions Never Before Seen By Human Beings? Can we please, please, please stop talking about autism as though it’s actually a thing that stands alone from actual people?

I know I’m old and jaded. Well, no, not really. Yes, I’m old. But I’m not jaded. I’m the opposite of jaded. I long for the time before autism was A Thing. I grew up before autism was A Thing. I grew up just being, you know, a kid. Just a kid. A kid with lots of what are now politely called issues, most of them unarticulated, but just a kid. I played baseball. I climbed trees. I stayed up till all hours. I read lots of books. I was quiet. I was kind. I had lots of plans for the future.

It would have been good to have articulated my issues. Seriously. I wish someone had helped with that. I wish someone had taught me how to take care of the body and mind that I had been given, rather than the body and mind that everybody thought I’d been given. I wish someone had given me a language for the particulars of how my mind and body work so that I wouldn’t spend the next 50 years of my life driving myself into the ground.

Really. I do wish for all that.

But I am so, so glad that autism wasn’t A Thing then. So glad. Because now it’s A Thing — A Thing that shadows me wherever I go. A Thing that I have to decide to disclose or not. A Thing that’s like a big box that I’m supposed get in and stay in and say This is Me. I often wonder who made that box, and I often wonder why they made that box, and I often wonder why people spend so much damned time talking about that box, worrying about that box, describing that box, and making money off that box — and spend so little time listening to and providing support to the people they’ve put in that box.

And sometimes, I wonder how the hell I even got in that box at all. I don’t recall that box even being there for the first five decades of my life. Did it just grow up around me and enclose me? Or did I jump into it, not realizing how hard it would be to get out — not realizing how hard it would be to say, in a world of boxes, that boxes feel suffocating?

My therapist in Brattleboro used to say that all labels are a box. Labels can be useful — for services, for finding kindred spirits, for getting support. But when it comes down to it, the support really needs to be about very particular things, not about the box, because all of us have very particular needs. None of us look like what’s advertised on the outside of the box — not completely. For me, the main disability is auditory. For someone else, it’s tactile. For someone else, it’s multi-sensory. For someone else, it’s a whole other constellation. You can’t put all that on a box, no matter how big it is. The label will always be a vast oversimplification.

I’d like to get out of the box now.

I’d like to just be Rachel again.

Just Rachel. Rachel who needs quiet in order to hear. Rachel who needs clarity in communication. Rachel who sees word pictures in her mind. Rachel who loves organizing, and who has a passion for so many things, and who can focus like a laser beam on any of them. Rachel who never stops thinking. Rachel whose heart is broken by the world on a regular basis. Rachel who fiercely hopes for better.

That Rachel. The one I’ve always been. The one outside the box.

© 2013 by Rachel Cohen-Rottenberg


More Ableism from Our Friends on the Left

I just found this graphic on a Facebook page called Moving The Sun To Shine in Dark Places:


[The graphic shows an eye chart with the text "The only thing worse than being blind is having sight and no vision."]

It’s appropriate in this context to note that I spell out the text on the graphic in order to make the blog accessible to my blind readers. Because yes, indeed, my abundantly well-intentioned friends on the left: Blind people read. They even read blogs. On the Internet!

But I digress.

About your graphic… How can I put this? I’ll try to be as direct as possible: Using the word “blind” as a pejorative is not the way to go when you’re fighting for social justice.

Why? Okay, let me spell it out.

In this context, “blind” is entirely negative — nearly the worst thing that could happen to a person. And the people worse off? The ones who can literally see, but who have no vision for making the world a better place. Thus, blind people are just one tragic step above people who are too cowardly, or too selfish, or too morally bankrupt to care whether the world goes to hell in a handbasket.

You see, you lost me when you attempted to inspire people to moral action by appropriating the experiences of  disabled people and attempting to speak in their voices. You looked at blind people and assumed that blindness is a tragic condition, roughly synonymous with an absence of moral and philosophical vision. And then you used your outsider’s judgment of a situation about which you know nothing to bolster your cause. You fell into one of the worst tropes our society has to offer about disabled people: that disability is a physical and moral tragedy.

May I make a suggestion? When you’re fighting for social justice and general kumbaya, avoid the ableist language. Is that so hard?

© 2013 by Rachel Cohen-Rottenberg