We fuck up. All of us. …. But when we shut each other out we make clubs of people who are right and clubs of people who are wrong as if we are not more complex than that, as if we are all-knowing, as if we are perfect. But in reality, we are just really scared. Scared that we will be next to make a mistake. So we resort to pushing people out to distract ourselves from the inevitability that we will cause someone hurt.

And it is seriously draining. It is seriously heartbreaking. How we are treating each other is preventing us from actually creating what we need for ourselves. We are destroying each other. We need to do better for each other.

We have to let go of treating each other like not knowing, making mistakes, and saying the wrong thing make it impossible for us to ever do the right things.

And we have to remind ourselves that we once didn’t know. There are infinitely many more things we have yet to know and may never know.

…

I want us to use love, compassion, and patience as tools for critical dialogue, fearless visioning, and transformation. I want us to use shared values and visions as proactive measures for securing our future freedom. I want us to be present and alive to see each other change in all of the intimate ways that we experience and enact violence.

This is all absolutely beautiful, and I am so happy to see someone talking about it. I am unbelievably tired of the verbal violence that passes for dialogue, particularly in social justice spaces, and anyone who pleads for coming from a place of love and empathy mixed with anger and pain is a person after my own heart.

But there are a couple of things about the article that call me up short. One of them is the way in which the author talks about people having “strayed.” There is something about that idea that feels both deeply foreign and painfully authoritarian to me. The concept appears in the following context:

I picture “calling in” as a practice of pulling folks back in who have strayed from us. It means extending to ourselves the reality that we will and do fuck up, we stray and there will always be a chance for us to return. Calling in as a practice of loving each other enough to allow each other to make mistakes; a practice of loving ourselves enough to know that what we’re trying to do here is a radical unlearning of everything we have been configured to believe is normal.

There is a Christian paradigm here of “straying from the fold” that I find very troubling. I don’t come from a Christian background of bringing people back into the fold; I come from a Jewish background in which we already belong and are free to disagree. So, in the context of the piece, what exactly is the ideology from which people “stray”? Who decides? Is it necessary to think about a central ideology around which we must all constellate, or should there be more room for critique, for disagreement, for generative argument? Straying assumes that we must come back to center. But whose center? Mine? Yours? Any group that treats me as though I’ve “strayed” is likely a group that I will “stray” right out of, never to return.

My other issue with the piece is that it is directed only to people inside social justice communities. There is not necessarily a problem with this approach, per se. After all, making sure our own communities are functional is a prerequisite for trying to create a more just and loving society. But I’m also aware of the necessity of applying “love, compassion, and patience as tools for critical dialogue, fearless visioning, and transformation” with people who are outside of social justice communities — with people who haven’t heard our critiques of the status quo, who haven’t examined their own complicity in oppressive systems, who haven’t done the reading or had the discussions or entered into the discourses that are so familiar to us. To me, this is the real challenge. How do we call people in who are way outside of our communities without exhausting ourselves, getting run over, or compromising what we believe in?

I believe it’s possible. I believe that we can combine love, compassion, patience, anger, outrage, pain, and despair as we talk with others who are outside of our circles. If we don’t combine all of these feelings — if we’re only in a place of anger and outrage, or we’re only in a place of love and compassion — we’re living at the polarized extremes that our society has taught us are normal, expected, and beyond critique. We’re creating either endless war or a false peace.

We can do better. We must do better.

Reference

Trần, Ngọc Loan. “Calling IN: A Less Disposable Way of Holding Each Other Accountable.” Black Girl Dangerous. December 18, 2013. Accessed January 1, 2014. http://www.blackgirldangerous.org/2013/12/calling-less-disposable-way-holding-accountable/.

© 2014 by Rachel Cohen-Rottenberg

How do you define activism?

I’ve been chewing on this question for awhile. It’s come up for me lately in the context of my graduate course. We are being asked to talk about the social relevance of our work, with an eye to bringing together theory and practice.

I find myself balking at the dualism of theory and practice. Surely, at least in the case of disability rights, disability theory is essential to thinking about how to solve problems, change cultural assumptions that lead to discrimination, and enable people to heal internalized ableism. I’m not sure that, when it comes to oppression, there really is a useful distinction to be made between thought and practice; after all, analyzing and critiquing oppressive norms like racism and ableism is part and parcel of creating change. For myself, reading disability theory has enabled me to move through discriminatory situations with a great deal more consciousness about what is actually going on (i.e. that it isn’t about me and “my problem”), and to therefore advocate for myself more effectively. When I can do so, not only do I help myself, but I also serve notice to people that the next disabled person who comes in the door may very well be prepared to do the same.

Perhaps the real issue isn’t the difference between theory and practice, but audience. For example, if academics are writing theory and it never goes beyond other academics and the pages of academic journals, then it cannot have an impact on ordinary people who need new frameworks in which to operate. This is a significant problem in academia. Except for my current graduate program, which is interdisciplinary and therefore oriented toward problem-solving, my experience in the field of humanities has been to be fired up with passion and outrage about the injustices of the world, only to hit the hard brick wall of the institution, which provides few opportunities for any sort of real-world practice. In fact, it was the presence of that wall that drove me out of academia for 25 years.

But my question about what constitutes activism goes far beyond questions of theory and practice into the mode of activism itself. For me, writing is my primary mode of activism, because it’s the way in which I communicate most effectively. It’s not the activism of talking to my legislators or organizing protests. It’s a quieter activism.

It’s the activism of replying to emails from parents, who ask about sensory issues, or about how to interpret their kids’ behavior, or about why certain language hurts.

It’s the activism of running the Autism and Empathy site, smashing stereotypes, and giving a place to voices that are all-too-often silenced in the popular media, in autism organizations, and in the scientific community.

It’s the activism of reflecting on my life, on my reading, and on my experience in a way that speaks to people who are just finding out that others feel as they do.

It’s the activism of building bridges with parents by letting people know that just as I need respect for my feelings and my process, so I will give them respect for theirs.

It’s the activism of creating a safe space on my blog, in which people who have never known safe spaces can express themselves without fear of being attacked for their perspectives.

It’s the activism of lifting up my voice and speaking out against murder, and abuse, and cultural violence against disabled people.

There are so many of us who cannot talk with our legislators, or organize protests, or do so many of the things that we tend of think of as activism. I am beginning to realize that defining activism is those ways is much too narrow. Of course, all those things are important. But they are not the only way to make change, and defining activism in those ways is to give in to ableist notions of what sort of action is worthwhile and what sort is not.

The fact is that it’s all activism. Every single piece of it.

Every disabled person who has the courage to ask for the accommodations they need at school or in the workplace is an activist.

Every disabled person who comes out of the closet and says, “This is who I am,” is an activist.

Every disabled person who works to defends his or her psyche against a steady onslaught of devaluation and dehumanizing messages is an activist.

Every disabled person who shares the words of another disabled person, and thereby helps to create a network of mutual support and pride, is an activist.

How could it be otherwise, when simply being disabled and loving our lives is a radical act?

© 2013 by Rachel Cohen-Rottenberg

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

“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

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

[The graphic is a Bingo card with 25 squares.

Title: How to Leave Disability Rights Out of Your Political Analysis

Top row:To be fully inclusive, feminists need to start dealing with race, class, and LGBT rights.
They attacked the man in the wheelchair only because of his race.
You’d have to be crazy to think that disability had anything to do with it.
Oh, God. She’s talking about disability AGAIN.
Disability? You mean sick and handicapped people?

Second row: We all have to be strong and independent.
The fight for LGBT rights is the last remaining civil rights struggle.
When I think about my privilege as a white male, I feel paralyzed.
When you ask, “Does this class on critical theory include disability?” what do you mean, exactly?
It’s different. We’re allowed to devalue your body.

Third row: GOP voters are blind/deaf/mentally ill/retarded/brain-dead.
Disability is a medical issue.
Free Space: Disability. Eww.
No, our forum on Diversity and Culture is not accessible.
It’s not like Deaf culture is really a culture.

Fourth row: If there are any special needs people in this class on critical theory…
Intersectionality means looking at how race, class, gender identity, and sexual orientation work together.
Are you nuts? You want us to include disability in our diversity curriculum?
Etc. Etc. Etc.
We’ll get to disability when we’ve dismantled the patriarchy.

Last row: We’re not talking about disability right now.
Stop distracting us from the critical issues.
Disability rights?
Didn’t we settle that with the ADA?
I fail to see how glorifying pain and suffering helps anyone.

The text below the graphic reads www.facebook.com/DisabilityAndRepresentation.]

© 2013 by Rachel Cohen-Rottenberg

Rachel, thanks so much for writing about the exhibit.

Unfortunately, you got an essential fact wrong: the access/ABILITY exhibit is totally accessible to people with disabilities. It’s on the first floor, and we have ramps and wide navigation paths everywhere we need them on that level.

We put the elevator notice on that page because we know that our disabled guests will want to see more than that one exhibit. The notice is also on the front page of the website and we announce it with signs at admissions.

The elevator repair, by the way, is beyond our control. The City of San Diego owns our buildings and maintains our elevators. We have no say as to when they will repair them or how long it will take. We’re hoping that the repairs will take much less time than predicted.

Thanks for being considerate of all of our visitors and keep up your good works.

In the light of Mr. Barrett’s email and comment, of course, I’ve corrected the post. My main points, however, still stand: any inaccessibility is a civil rights violation, and the presence of the exhibit itself reflects the basic segregation and inequality with which disabled people live.

—

I know that our society, by and large, does not yet see disability as a civil rights issue. I know that when people see stairs but no elevator, most of them don’t realize they’re looking at a civil rights violation. I know that most people don’t even blink when they see a sign that says that people with disabilities have to enter through the back door.

But every now and then, I’m surprised by how far behind the curve we are. Case in point: The San Diego Museum of Man has an exhibit called access/ABILITY in which you can allegedly “learn about how people with disabilities navigate the world!” (Exclamation point not mine.)

How does one become thus enlightened? Well, all you have to do is to “Learn phrases in American Sign Language, type your name in Braille, try a hand-pedaled bike and take part in a multi-sensory City Walk!” (Again, exclamation point not mine.) Because that’s what it takes to understand how disabled people live. Just go to a museum.

And of course, it is sure to “inspire.” It always, always has to “inspire.” Because really, that’s how disabled people navigate the world. Inspiringly.

And then — and hold on for this one — the exhibit is currently not accessible to people with disabilities.the entire second floor is inaccessible to people with disabilities. Yes: in a museum with an exhibit showing how disabled people “navigate the world,” disabled people cannot navigate up to the second floor to see any of the exhibits there. I’m not kidding. The website reads:

Our elevator will be out of service June 24 through August 2. If you require an elevator, you will be unable to visit the second floor exhibits. We apologize for the inconvenience.

Of course, these three sentences are not without irony. After all, they say more about how disabled people navigate the world than a museum exhibit ever could. Not only is the exhibit second floor inaccessible, but the lack of an elevator is described as an “inconvenience” rather than as a civil rights violation. For those just joining us, that’s like calling a sign that says, “No blacks or Jews allowed” an inconvenience rather than a civil rights violation.

The very existence of this kind of exhibit (are we still exotic animals to be exhibited?) speaks volumes about the inequality and social segregation of people with disabilities. Volumes. If we people with disabilities were actually integrated into society, people would have a pretty stellar notion of how we navigate the world. But when we’re set apart, we become curiosities.

As far as I’m concerned, this kind of exhibit is simply the 21st-century equivalent of a freak show. The fact that such things still exist is evidence of how very far we have to go.

© 2013 by Rachel Cohen-Rottenberg

I need to make a request. I’ll try to keep it brief and I’ll do my best to be clear about exactly what I mean.

PLEASE STOP FUCKING IGNORING DISABILITY.

I’ve noticed that many of you complain loudly and vehemently that feminism doesn’t do intersectionality right because it leaves out race, class, LGBT issues, genderqueer issues, religion, ethnicity, and body size. I agree. I completely agree. It’s why I left feminism in disgust some time ago. So imagine my utter fucking surprise when I notice that, oh hell, there is no room for me to agree at all because, as a disabled woman, I haven’t even been invited into the discussion.

I mean, really. It’s provoking to watch you call out feminists for not doing intersectionality right while you leave disabled people out of it altogether. While you keep chanting “race, class, gender” over and over, congratulating yourselves on how inclusive you’re being, you’re leaving out one-fifth of the population.

Disability winds through every other form of oppression. There are disabled people of color, disabled working class people, disabled poor people (lots), disabled LGBT people, disabled genderqueer people, disabled fat people, disabled religious people, disabled people of every ethnicity, and disabled people who experience every form of oppression that human beings can perpetrate. I know the thought that you could become one of us in a millisecond scares the absolute living fuck out of you, but seriously, deal with your fears already because they are not helping us. Start grokking the fact that disabled people are being assaulted, killed, institutionalized, and otherwise having their civil rights violated every goddamned day.

Because in case you haven’t gotten the memo, disability is a civil rights issue.

When people have their children taken away because they’re disabled, it’s a civil rights issue. When people are refused entrance into a restaurant or a theatre or a public park, it’s a civil rights issue. When people are counseled to die rather than live, it’s a civil rights issue. When people are consigned to poverty because of the ways their bodies look and function, it’s a civil rights issue. When people are assaulted, spit on, and killed because they’re disabled, it’s a civil rights issue. When people live in isolation even within communities that talk about oppression and social justice, it’s a civil rights issue.

Every time you fail to acknowledge our presence, it only increase our invisibility. So really, how the hell are we disabled people supposed to join you in doing anti-oppression work if you keep treating us like the embarrassing relative no one talks about?

Allies have one another’s backs. No way in hell am I saying, “I’m your ally, but when it comes time for you to fight for me, I’m on my own.”

Fair is fair.

Reciprocity forever.

In solidarity,
Rachel

© 2013 by Rachel Cohen-Rottenberg

[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

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

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

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

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

…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

References

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

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

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

© 2013 by Rachel Cohen-Rottenberg