From an article in The Boston Globe, by S. I. Rosenbaum:

SOMERVILLE - Here is Bonnie Denis: pierced and tattooed and dreadlocked, balancing on a pair of custom-painted, raspberry-pink crutches.

Here is Bonnie Denis’s right foot: small and calloused and square, the arch bent outward, toes overlapping each other like windblown trees.

When she walks, it feels “like there are a bunch of knives stabbing me,” she said.

So about three years ago, after a host of surgeries and years using a wheelchair, Denis, 30, made a decision.

The foot was coming off. She would find a doctor to amputate it.

But it was not that simple.

Doctor after doctor turned her away. The foot was “healthy,” they said. The tissue was alive; blood circulated through it. Amputation was not absolutely necessary.

Stories like this make me feel very libertarian. It’s her body, dammit! This — doctors who don’t seem to believe that people with disabilities may have some idea of what’s best for their own bodies — seems to me a pretty common theme in writing by and about disabled folks.

There’s more at the Globe. Bonnie Denis did eventually find a doctor who is willing to help her, you’ll be glad to hear. I also liked the bit about zombie bones.

Overwhelmingly sad news today: Harriet McBryde Johnson has died at age 50.

Image description: The photo shows Johnson in a flowered-print navy dress looking toward the camera. She sits in her wheelchair, though the image is a close-up focusing on her and not the chair. Johnson leans forward, right elbow on knee, chin in right hand. She’s a middle-aged white woman with dark hair in a very long braid trailing over her shoulder and into her lap. She’s not quite smiling, but looking interestedly back at you.

The Post and Courier of Charleston, SC, provides a preliminary notice, with a more formal obituary expected soon (the NYT will have something too, I hear):

Harriet McBryde Johnson, a well-known Charleston disability and civil rights attorney, died Wednesday.

“She worked yesterday. It’s a shock to everybody,” said friend and attorney Susan Dunn.

She was born July 8, 1957, and had been a Charleston resident since age 10.

She told The Post and Courier that she became an attorney because her disability-rights work had taught her something about the impact of law on how people live. . . .

Johnson, who was born with a neuromuscular disease, drew national attention for her opposition to “the charity mentality” and “pity-based tactics” of the annual Jerry Lewis muscular dystrophy telethon. Lewis told the Chicago Tribune he had no intention of making peace with opponents such as Johnson. He likened the idea of meeting with them to entertaining Hezbollah or insurgents in Iraq.

The protests started after Lewis wrote a 1990 Parade magazine article in which he imagined being disabled. Among his conclusions, “I realize that my life IS half, so I must learn to do things halfway. I just have to learn to try to be good at being half a person.”

Some of Johnson’s writings:

Unspeakable Conversations in The New York Times, February 16, 2003 — The magazine cover story featuring her debate with Peter Singer on disability and personhood.

The Disability Gulag in the NYT, November 23, 2003 — On escaping the institutionalization that threatens so many disabled people.

As New Mobility’s Person of the Year in 2004, article by disability activist Mike Ervin

The Way We Live Now: Stairway to Justice in the NYT, May 30, 2004 — On the U.S. Supreme Court ruling on Tennessee v. Lane.

Overlooked in the Shadows in the Washington Post, March 25, 2005 — Harriet on Terri Schiavo. (Same article also published at Slate and in audio at NPR)

Too Late To Die Young: Nearly True Tales From a Life, her memoir, published in 2005. Reviewed by Ragged Edge, excerpted in AARP Magazine, and included in a roundup of memoirs by disabled women at Disability World.

Accidents of Nature, her youth fiction book about a sheltered 17-year old girl with cerebral palsy who attends a summer “Crip Camp” and confronts how her physical differences and the accompanying ableism affect her interactions in the world. She and a friend also confront the ableism itself.

Speaking on video about Medical Ethics at Insights TV for the United States Holocaust Memorial Museum. The first section at the link is “Perspectives on Antisemitism,” with Harriet McBryde Johnson directly below as part of the “Medical Ethics” section. Clicking on the link by Harriet’s photo and below the headline introducing her brings a pop-up window that includes a full transcript. Here’s the direct link to that window and transcript.

Wheelchair Unbound in the NYT, April 23, 2006 — Johnson writes about speaking at the U.S. Holocaust Memorial Museum.

Alas for Tiny Tim, He Became a Christmas Cliché in the NYT, December 25, 2006

A Step-by-Step Guide to Organizing a Protest Against the Jerry Lewis Telethon at disability activist Laura Hershey’s site Crip Commentary

13 Questions at BBC’s Ouch! on May 12, 2008

The Gimp Parade has an index label just for Johnson, and Barry has discussed her writing a number of times at Alas, A Blog.

More links posted as available.

Update: There are links to blog tributes in the comments below, as well as this more complete (and more ableist in language) obit in the Charleston Post and Courier.

Friends of Johnson have created this website dedicated to her life and memory.

Cross-posted at The Gimp Parade

(Not yet proofread; please bear with me.)

For me, one of the most striking things about pregnancy has been how pregnancy affects embodiment. In particular, I’m referring to how societal interactions and structures make affect social psychology and social interaction. One of the things I’ve noticed in the last few months of my pregnancy is the tendency for people to move over when I walk by them.

I first noticed this among men, especially younger men. It was almost like they would jump out of my way when they saw me coming. Some were clearly being gracious and definitely trying to be polite and considerate, and others looked almost scared, as if I was going to go into labor on the spot. What was fairly consistent was a lack of verbal interaction or sustained eye contact. Older men (those who seem to be over 50), have had very different reactions. They tend to hold doors, make more eye contact, and even strike up conversations. I’ve notice a little bit of difference in relation to ethnicity. Since I live in a neighborhood with many immigrants and different racial groups, I have day to day interactions with many men from different racial and ethnic backgrounds. In my own experience, both Latino and West African men (not African American, but West Africans) are much more likely to have to smiling, friendly, excited reaction. It seems that American born men (or those who are heavily assimilated), regardless, of race are more likely to jump out of the way and avoid eye contact. It is possible that many Latin American and West African cultures are very pronatalist that men view pregnant women in different ways than American men.¹

As for women, it took much longer for women to do the move over thing. I’ve only noticed women moving over in the past few weeks when my stomach has been huge² My experience has been that women are less likely than men to give this pregnant woman extra physical space. When women do move out of the way, it feels different. It rarely feels like their scared, but I do get a sense of pity from some of the women who move over. For most of the women who have a noticeable reaction to my pregnant body, their physical reaction is not really one of distancing themselves. They tend to try to do helpful things like hold the elevator, and then ask the programmed questions like: “When are you due?” “What are you having, boy or girl³?” Women, especially older women, may offer their own personal stories. Although I’ve also had some elderly and young women, act in a way that I interpreted as rude. For example, I’ve had a few cases of elderly women rushing to get ahead of me in line, which I would generally ignore if I wasn’t pregnant. I think there is an interesting conflict between women who are slowed because they are pregnant and women who are slowed because they are older. In terms, of ethnicity I haven’t noticed many differences. The Latinas in my neighborhood tend to have the most favorable reactions, but I felt that I had more pleasant interactions with Latinas before I was pregnant, so it is hard to know how much pregnancy has changed my interactions. I know I’ve had several cases of women speaking to me in Spanish about the babies, and I speak enough Spanish to communicate a little. I’m not comfortable generalizing about racial or ethnic differences in women in relation to moving over, but I think there are other race/class/gender differences in how women react to pregnant bodies or the idea of pregnancy.

The other factor that seems to influence how men and women react to my pregnant body in public interactions is the whether or not I’m alone, with a woman, or with a man. When I’m with my husband, I don’t get as many move over reactions from anybody, male or female. Moving over seems to happen more when I’m with women or, especially, when I’m by myself. I think when I’m with a man, who appears to be my partner, people think I have someone to “take care of me,” so they don’t feel compelled to respond.

From a social psychological perspective, this has made me very aware of my pregnant body. I rarely forget about being pregnant when I’m out in public. Of course, the smiles and other reactions make a big difference in how I interact, but the one that I really notice most is the move over reaction. That reaction has made me a little more sensitive to people with visible, physical disabilities. I don’t see pregnancy as a disability, but I think there are similarities in how people reaction to disabled bodies and pregnant bodies. Moving over is definitely one thing both groups have in common. I can see how people in each group can have their sense of self altered by these repeated move over interactions.

1. I know in my partner’s culture–Nigerian, Igbo–there is a special word that means “mother of twins.” I’ve been called that by almost everybody in the family, male or female, and the connotation is very positive. (back)
2. Remember I’m carrying twins, and right now my belly is bigger than almost any woman I know who has had a baby, so I have wondered if the reactions of other women would be different if my stomach was a more typical size. (back)
3. The question about gender take on another dimension when the person asking finds out that you are having twins. People get really excited, and the most common question I’ve gotten is, “Do twins run in your family?” (back)

This is an image from the Icarus Project, a radical mental health support network. I saw it when it was reprinted in a local zine (more on that later): You can find a larger version here.

[Image description: It’s a poster headed taking care of the basics. It is divided into 5 parts: eating, sleep and rest, exercise, schedule and herbs, meds etc. Each has a cartoon drawing, half with people who are doing things in a way that is portrayed as unhelpful, the other half with people who are doing things in a way that is portrayed as helpful.]

I wish I was disappointed; I wish I expected more of so-called radical organizations. But no, when trying to illustrate unhelpful eating patterns for depression they show a fat person eating a burger and fries, and they contrast this with thin people eating a home cooked meal served by a woman (the headline is my alternative title for the Eating Well illustration).

The illustration is not radical. Fat-hatred is not radical. Food-hatred is not radical. People can pretend that their disgust at a burger and fries* comes from their dislike of multi-national corporations. But their disgust at a fat body is in plain view.

* Which as far as meals when you’re depressed go seems pretty good to me. It has protein, carbohydrates and fat. It will fuel your body.

Did you know that Dorothea Lange, famed Depression-era photographer, had polio and that her experience with disability informed her work?

Ms. CripChick presents the latest Disability Blog Carnival on Disability Culture and Identity: “Here They Come!”

“I think it was perhaps the most important thing that happened to me. It formed me, guided me, instructed me, helped me, humiliated me, all those things at once. I’ve never gotten over it, and I am aware of the force and power of it.”
—Dorothea Lange on disability

Over 40 bloggers weigh in on how the shared history, struggle, and culture of disability inform personal and group identity. This is an impressive collection of varied explanations on how what is viewed as a deficit by mainstream culture can be a binding force and a cause for celebration. Go and read.

Image description: The icon above, provided by CripChick, is a color image of a self-portrait by Frida Kahlo with the words “DISABILITY BLOG CARNIVAL” in bold black type across the painting. The image is a close-up of Frida in her wheelchair from the 1951 painting “Self-Portrait with Portrait of Dr. Farill” described in detail in both English and Spanish here.

Cross-posted at The Gimp Parade

Wheelchair Dancer wrote an excellent critique of the ableism in my last post on shades of grey in activism.

The whole thing is below, but you should also check it and her other works out on her blog, Wheelchair Dancer.

On Making Argument: Disability and Language.

We all use disablist or ableist metaphorical language, and I bet most of us say something that is potentially offensive every day: we might be blind to this, deaf to that, pass disabled vehicles, chat about being paralyzed in a situation, etc., etc. I’m often uncomfortable with it — I never use the moron or cretin words — but, honesty here, I do say idiot. I never say, “that’s lame;” I almost never say blind, deaf, paralyzed, cripple, but I occasionally I find myself saying, “that’s dumb,” with full negative rhetorical force. Most of the time, if I slip up the non-disableds I’m with don’t notice; however, the disableds get it, call me on it, and we talk.

If you are feeling a little bit of resistance, here, I’d ask you to think about it. If perhaps what I am saying feels like a burden — too much to take on? a restriction on your carefree speech? — perhaps that feeling can also serve as an indicator of how pervasive and thus important the issue is. As a community, we’ve accepted that commonly used words can be slurs, and as a rule, we avoid them, hopefully in the name of principle, but sometimes only in the name of civility. Do you go around using derivatives of the b*ch word? If you do, I bet you check which community you are in…. Same thing for the N word. These days, depending on your age, you might say something is retarded or spastic, but you probably never say that it’s gay.

I’d like to suggest that society as a whole has not paid the same kind of attention to disabled people’s concerns about language. By not paying attention to the literal value, the very real substantive, physical, psychological, sensory, and emotional experiences that come with these linguistic moves, we have created a negative rhetorical climate. In this world, it is too easy for feminists and people of colour to base their claims on argumentative strategies that depend, as their signature moves, on marginalizing the experience of disabled people and on disparaging their appearance and bodies.

Much of the blogosphere discourse of the previous weeks has studied the relationships between race, (white) feminism and feminists, and WOC bloggers. To me, the intellectual takeaway has been an emerging understanding of how, in conversation, notions of appropriation, citation, ironization, and metaphorization can be deployed as strategies of legitimation and exclusion. And, as a result, I question how “oppressed, minoritized” groups differentiate themselves from other groups in order to seek justice and claim authority. Must we always define ourselves in opposition and distance to a minoritized and oppressed group that can be perceived as even more unsavory than the one from which one currently speaks?

As I watched the discussion about who among the feminist and WOC bloggers has power and authority and how that is achieved, I began to recognise a new power dynamic both on the internet and in the world at large. Feminism takes on misogyny. The WOC have been engaging feminism. But from my point of view, a wide variety of powerful feminist and anti-racist discourse is predicated on negative disability stereotyping. There’s a kind of hierarchy here: the lack of awareness about disability, disability culture and identity, and our civil rights movement has resulted in a kind of domino effect where disability images are the metaphor of last resort: the bottom, the worst. Disability language has about it a kind of untouchable quality — as if the horror and weakness of a disabled body were the one true, reliable thing, a touchstone to which we can turn when we know we can’t use misogynistic or racist language. When we engage in these kinds of argumentative strategies, we exclude a whole population of people whose histories are intricately bound up with ours. When we deploy these kinds of strategies to underscore the value of our own existence in the world, we reaffirm and strengthen the systems of oppression that motivated us to speak out in the first place.

Some background and ground rules. Though I am using Mandolin’s post in detail, I will be referring to her throughout as “the writer.” This is because I am not interested in making an anti-Mandolin conversation. I wish to begin a conversation about disability, language, authority, and power. Mandolin’s post just got me started.

Organizational strategy. That was the theory and conclusions. In the rest of the post are some explanations of how I got there. I’d like to go about this two ways: first talk about details of the post and then talk about implications.

Part 1: Details

But more on the systemic level. We cut off our own feet. If we can’t acknowledge we’re all trapped in racist and sexist systems, systems which compromise our most purely intended actions, systems that prescribe our choices and make us choose between lesser evils… what can we fight?

We commonly talk about us “handicapping” ourselves in a given situation. Here, the writer takes a more literal approach: we become double BKAs (below the knee amputees). This, in itself, might be a small oversight, except that the image of the amputation as a self-inflicted injury is troubling. It is even disturbing because it reaffirms the idea that disabled people are trapped, paralyzed (by their own doing or perhaps not) and helpless — in this case before the forces of evil oppressive systems.

Yes, I know, images and language like this are so routine that they are almost invisible. But that doesn’t make it acceptable. Language and its ideas still have effects. In this case, they are part of a system of images that the writer has begun to use whenever she needs to talk about a powerless situation in the identity and cultural politics wars. The image is not hers to begin with, but she takes it on and takes it over in a title and in the post that follows that title. And then, the same image shows up in, here, in the Grey Activism thread. It’s almost as if amputation of the legs is this writer’s way of indicating the victimization of a well-intentioned person who then becomes helpless either in the face of critical discourse or in the face of discourse systems that have power to wreak havoc on an innocent speaker.

The second detail is an example of how, once it becomes acceptable to take small images in brief words and phrase, it becomes possible to make huge paragraphs:

There’s a personality disorder called Borderline Personality Disorder in which sufferers have a great deal of difficulty understanding ambiguity. They tend to view themselves and others as either entirely good or entirely bad, a switch that will flip with great regularity. On a good day, they are all good. On a bad one, they are the worst person who ever lived. If you give them something they like, you’re an angel; if you speak a harsh word, you’re an evil person conspiring against them.

I tend to drive some of our legalistic commenters here crazy…

This is an awfully generalized description of Borderline Personality Disorder. Short on factual information, it relies on the safety of the You and Them dichotomy: You and those awful Them. And it highlights Their irrationality, Their craziness, Their suffering. The suffering thing is a key point. To use such language is to imply that people are prone to their diagnosis, stripped, in some ways of their personhood — to the point that they can become THEM, a safely otherable pile of flesh. The disability civil rights movement has worked years to educate people on language like this. We don’t “suffer” with our disabilities; we are not our medical diagnoses. To reduce us to our diagnoses is to suggest that there is a fundamental binary of human existence: able-bodied and not. And those who are not, suffer. And it offers an understanding of disability that is wholly medical and awful. There is no natural physical variation, no understanding of how environment and culture contribute to the understanding of disability; there is only the awfulness of BPD. BTW: there’s a tremendous amount of dispute in disability communities about how diagnoses like this are formed. It’s not like irrationality is objective. It’s not like, medically speaking, you do these things and BOOM! BPD.

Essentially, this is a coercive argument by analogy that is successful because of the awful image of BPD it uses. It kind of runs like this. BPD is bad. People who have it aren’t like you and me — they’re irrational. Crazy. And when we do these kinds of things — “trying to define THAT person as evil for THIS compromised act and making that declaration of good or evil a single, solid, reified thing” — we are exhibiting the behaviours of someone with BPD. So, don’t do them. You wouldn’t want to be seen as having BPD, now, would you?

And what to make of the writer’s very next sentence where she declares that she drives people crazy? If you don’t acknowledge the power of the words you wield, the border line between the real and the figurative is very porous.

OK. Enough. I’ve spent so much time on the literal value of the metaphorical details and figurative language because I think not recognizing the literalness of all of this is critical to the next move.

Part 2: Implications

The most important things to me here are one: the fact that one of the people posited throughout the post — the poor liberal who in trying to do good and be complex makes a couple of mistakes — ends up helpless before the dysfunctionality of the politics of the system. And two: the fact that, by the end of the post that person is represented as a double BKA with BPD: a double below the knee amputee with borderline personality disorder. A wacky, helpless, and perhaps dangerously irrational, disabled person. The details may seem small when looked at individually, but that final image is extraordinarily undermining of the disability civil rights movement and of modern progressive understandings of disabled people’s place in society.

Relying on the figurative value of disability metaphors tends to render disabled people invisible; it cuts us out of the conversation. And we are a part of those communities — a necessary part. Disability IS a feminist issue and vice versa (think choice, think end of life, think pre-natal testing, think any part of body autonomy). The constructions and experiences of disability in a divergence of racial and ethnic communities are important to us — for the disability civil rights movement is mainly white. We who are feminist, of colour, and of disability are critical to the conversation, but, to quote Vicki Lewis, we disabled folk are not your metaphor.

And we do experience the exclusion from the conversation in many of the same ways discussed over and over again in the past weeks. Personally, I get tired of trying to bring the disability angle to the table — others I know do, too. As a movement, in our daily lives, and even as a scholarly field in the hallowed halls of academia, disability and disabled people have yet to be recognized as full participants in the conversations about intersecting identities, power, the body, etc. etc.

In the disability movement, we often talk about interdependence and the way all humans are dependent, in some ways, on each other. We use these terms as a way of countering the very material point that disabled people are dependent, non contributing burdens on society, and we use it to challenge the narratives of able-bodied American self-sufficiency. I can’t speak for a very diverse movement, but, to me, one of the signature disability moves is to look for a collaboration that acknowledges the interdependence of all peoples while respecting and valuing their differences. There is no logical need for one of us to leverage off the other: collaboration not competition floats more boats on a rising tide.

So, the next time you need to make an argument about the value of your particular minoritized group, its place in society and culture, its history, etc., I’d ask you to look down and check whose broken back (metaphorically speaking, of course) you are standing on.

Some of my response to the email where she was kind enough to send me this is below the fold.
Read the rest of this entry »

Michael Bérubé at Crooked Timber has a good and fairly long post comparing the disability policies of Clinton, Obama and McCain. Kathy at The G Spot nutshells for us:

– Hillary Clinton’s disability policy? Very, very good.

– Barack Obama’s disability policy? Even better!

– John McCain’s disability policy? Complete and utter craptastic-ness.

Both Michael’s and Kathy’s posts are excellent and well worth reading in full.

I did wonder if some disability activists wouldn’t look at the candidates in terms of “right to die” laws and find McCain to be better on that issue than the two Democrats. (Although I don’t know if any of the three have specifically spoken about that issue.)

A bit from Michael’s post:

And I have to admit that I’ve been mightily vexed by […] the phenomenon of the avoidance of disability qua disability. It’s as if we Americans have been talking about disability all our lives, as Molière’s M. Jourdain has been speaking in prose, without realizing it. Remember that debate about SCHIP? You know, the one we lost on Bush’s veto? What the hell was that about? It was about disability, folks – about children suffering catastrophic illnesses and traumatic injuries for which their parents couldn’t (and their parents’ dastardly, moustache-twirling health-insurance providers wouldn’t) provide. Vets returning from Iraq with PTSD or TBI (post-traumatic stress disorder or traumatic brain injury) and being warehoused and/or underserved and/or neglected by VA hospitals? Uh, well, once again, here we’re talking about disability. Why in the world do we frame these things as matters of “health” or “employment” or “veterans’ benefits,” when doing so prevents us from realizing that we’re all touching different appendages of the 8000-pound elephant in the room? The subject is disability, people. It’s about our common frailty and vulnerability. Get used to it.

The newest Make/Shift has a great interview with Mia Mingus, a “twenty-seven year old queer, disabled, Korean transracial adoptee” who is the co-director of Reproductive Justice Now!. Mingus’ interview is excellent and covers a lot of ground.

The whole interview isn’t available online, but Aaminah Hernández quotes a passage:

… I was taught to claim my body as a girl, female, woman, but not as a disabled person. When it came to my disability, my parents looked to doctors, health-care providers, medical experts, and brace makers. I was not the expert on my body; they were. No one ever connected that my experiences with teh medical industrial complex as a disabled child would ultimately discourage me from seeking medical services (reproductive or not) in the future. Or that standing in my underwear in front of male doctors as they studied me was no different from standing in my underwear in front of any old men as they studied me.

For years I wore a brace on my right leg. I had some that went from my foot to my knee and some that went all the way up to my hip. My braces were made of plastic and/or fiberglass. In the Virgin Islands Caribbean weather, they itched, pinched my skin, and gave me painful blisters. When I wore them, I could hear horrible brace makers’ voices in my head: ‘that’s an ugly walk,’ ‘walk down the hallway again - and this time, try to make it prettier,’ ‘don’t worry, you’ll be able to hide the brace under your clothes - boys won’t even know it’s there.’

The invasion of my body at such a young age by people who never engaged with me about what I felt being told that my body was ‘wrong’ and ’something to fix’ over and over again…The ownership and entitlement of the medical industrial complex of my disabled body is, in my mind, no worse than the ownership and entitlement of the system of white supremacy of my body of color, or the ownership of the system of male supremacy of my female body. In fact, they are so connected and mutually interdependent that they are impossible to separate…

… The way in which I was receiving care was not about actually caring for who I was, but about making me fit into the mythical idea of ‘normal’ - and of course it was assumed that being ‘normal’ is what I wanted. I think one of the key issues for me around receiving medical care is that it is already working from a paradigm of ableism that pathologizes bodies. It’s not to say that all medicine is bad, but more that the particular way that I got treated as a disabled woman of color was about ‘fixing’ my body, as measured against an ableist (racist, sexist, heterosexist, etcetera) standard of what was ‘right.’”

The interviewer was Irina Contreras.

(Watch the ad before reading further if you prefer to avoid “spoilers”).

Read the rest of this entry »

From the Sacramento Bee:

Older, sicker patients could be allowed to die in order to save the lives of patients more likely to survive a massive disaster, bioterror attack or influenza pandemic in California.

It’s not how nurses and doctors are accustomed to doing things, nor how Californians expect to be treated. But it is part of a sweeping statewide plan being praised for its breadth, even as it rankles providers who will have to carry it out.

The new “surge capacity guidelines” released by the state Department of Public Health, depict a post-disaster health care environment that looks and feels nothing like the system most Californians depend on.

It provides for scenarios in which patients could be herded into school gymnasiums for life-saving care or animal doctors could stitch up the human wounded and set their broken bones.

The 1,900-page document lays the practical – and ethical – groundwork for local and county health departments, hospitals, emergency responders and any able-bodied health care worker likely to be called upon in a catastrophe.

Striking in its specificity and its frank focus on the need to suspend or flex established laws and to ration health care, the plan is being hailed as a model for the rest of the nation.

You really need to read the whole thing to get a sense of how the plan would simultaneously limit patient protections and provide freer access to care.

Cross-posted at The Gimp Parade

I’ve heard good things about a new documentary film, Praying with Lior, only opening now in a few cities and playing primarily at Jewish film festivals. From the film’s website:

An engrossing, wrenching and tender documentary film, Praying with Lior introduces Lior Liebling, also called “the little rebbe.” Lior has Down syndrome, and has spent his entire life praying with utter abandon. Is he a “spiritual genius” as many around him say? Or simply the vessel that contains everyone’s unfulfilled wishes and expectations? Lior – whose name means “my light” — lost his mother at age six, and her words and spirit hover over the film. While everyone agrees Lior is closer to God, he’s also a burden, a best friend, an inspiration, and an embarrassment, depending on which family member is speaking. As Lior approaches Bar Mitzvah, the Jewish coming-of-age ceremony different characters provides a window into life spent “praying with Lior.” The movie poses difficult questions such as what is “disability” and who really talks to God? Told with intimacy and humor, Praying with Lior is a family story, a triumph story, a grief story, a divinely-inspired story.

It sounds like this could go either way, right? The stereotyping of a child with Down syndrome as closer to God than the rest of us, an inspiration or a burden are themes on developmental disability we’ve heard many times before.

But filmmaker Ilana Trachtman’s motivations as reported by Devorah Shubowitz at Media Rights reveal complexities behind the intent of the documentary:

As Trachtman struggled to focus during a Rosh Hashanah service at Elat Chayyim, a multi-denominational Jewish retreat center in the Catskills, she was mesmerized by the soulfully attentive off-key voice that came from behind her. When she saw the source, a boy with Down syndrome, she was shocked. Lior’s praying shattered her expectations of what people with disabilities can do. “He amazed me. He could do something that I can’t do — pray with real concentration in Hebrew and in English. So I stalked him because of my own spiritual curiosity.” When Trachtman heard Lior was going to have a Bar Mitzvah, she thought somebody should tell his story on film and shortly after, she decided to be that person….

Audiences may debate whether this photogenic young person’s “star quality” sets him apart from other people with disabilities. Some may argue that Lior’s integration is dependent upon his recognition by and attractiveness to non-disabled society. Others may think his charisma is connected to his disability. The film certainly brings to the foreground issues of the aesthetics of disability, and non-disability, in film.

Another review at Cinematical also suggests that disability is just one (important) facet of this complex family story about love and religious faith.

Cross-posted at The Gimp Parade

From the AP story:

A wrongly deported U.S. citizen who was missing for months in Mexico sued the Department of Homeland Security and the Los Angeles County Sheriff’s Department on Wednesday.

Pedro Guzman, 30, who is mentally disabled, was deported last May after he was arrested and jailed on a misdemeanor trespassing charge. For nearly three months, his family searched for him in shelters, jails and morgues in Tijuana, Mexico, and the surrounding area.

During that time, he rummaged for food in garbage cans, washed himself in rivers and walked as far south as Ensenada — more than 60 miles from the U.S.-Mexico border, according to the lawsuit.

Guzman tried to return to the United States several times, but was turned away. He was found near the Calexico border crossing in August and reunited with his family.

“I will never forget what Peter looked like when he finally returned to the U.S. — exhausted and in terrible shape,” said Guzman’s brother, Michael. “Peter’s life is forever changed by what his government did to him.”

His lawsuit, which seeks unspecified damages, was filed in federal court in Los Angeles by the American Civil Liberties Union on behalf of Guzman.

“Not only does Peter and his mother want some vindication, they want to make sure immigration officials understand they can’t do this,” said attorney Jim Brosnahan, who represents Guzman. “They should have apologized and said they would take steps to make sure this doesn’t happen again.”

A statement released by Immigration and Customs Enforcement, a branch of Homeland Security, called the incident a “one-of-a-kind case” and added more than 1 million illegal immigrants have been deported since the agency’s inception.

See other posts on Guzman here and here.

Cross-posted at The Gimp Parade

Through the appeals process, the decision to deny Robert Latimer parole has been overturned:

After seven years in prison for killing his severely disabled daughter, Robert Latimer will be freed on day parole this week.

The appeal division of the National Parole Board this afternoon overturned a parole board decision last December that rejected Mr. Latimer’s bid for parole.

The appeal division, following a month-long review, concluded Mr. Latimer does not in fact pose an undue risk to reoffend.

….

In its decision in December, a three-member panel of the parole board concluded: “You could not or would not describe the feelings or thoughts underlying your actions at the time of the offence…. You appear satisfied with the position that you and only you were able to determine her life or death, describing such decisions as beyond the law.”

The appeal division, however, found that although Mr. Latimer was at times unfocussed, he was not unwilling to answer their questions.

“The Appeal Division finds that the Board’s determinations in this regard are unreasonable and unsupported. Your responses at the hearing reveal that you did in fact demonstrate insight and were able to explain why you decided to end the life of your daughter.

The appeal division has applied two conditions to his parole: Mr. Latimer cannot have responsibility for, or make decisions for, any individuals who are severely disabled.

See previous post on Latimer here.

Cross-posted at The Gimp Parade

This is a the latest of a series at my blog, usually consisting of an amusing visual image about disability. Visual descriptions are meant to both assist those who cannot view the image well, and encourage discussion when others see something different.

Visual description: A one-pane comic, drawn very simply. A stick figure stands next to a sign posted on a wall that reads “Third Floor Office” with some Braille just below those words. At the top of the comic: “I learned to read Braille a while back, and I’ve noticed that the messages on signs don’t always match the regular text.” The stick figure touching the Braille signage has a thought balloon translating what she reads: “S-I-G-H-T-E-D P-E-O-P-L-E S-U-C-K … Hey!”

Comic source

h/t to Andrea at Andrea’s Buzzing About

Cross-posted at The Gimp Parade

Last month, the state of Massachusetts issued a report on an August 2007 incident at one of the group homes of the Judge Rotenberg Center (JRC) where, on the basis of a phonecall, two boys were awakened in the night and repeatedly given electric shocks by the adults responsible for their care. If you’re not already familiar with the JRC in Massachusetts or the aversive therapy used there on institutionalized disabled children, Mother Jones provides details in an article published this past September.

Eight states pay up to $200,000 per student, per year, to send otherwise “unplaceable” children with autism, psychological and behavioral disorders to the residential institution that uses aversive therapy to control many of its young inmates. Very generally, aversive therapy involves the use of a wide range of unpleasant stimuli to discourage specific behaviors. At JRC, aversives include electric shocks, food deprivation and isolation. On children.

The phonecall that led to the nighttime torture of the two boys turned out to be a prank. From the Boston Globe:

The report says none of the six staff members in a Stoughton residence run by the Judge Rotenberg Educational Center on the night of Aug. 26 acted to stop the harrowing events for three hours, despite ample reasons to doubt the validity of the caller’s instructions to wake the boys in the middle of the night and administer painful shock treatments, at times while their arms and legs were bound. 

The caller said he was ordering the punishments because the teenagers had misbehaved earlier in the evening, but none of the home’s staff had witnessed the behavior that the caller cited. As the two boys’ screams could be heard throughout the house, near-mutiny erupted among the other boys, who insisted that the accused teenagers had violated no rules. One boy even suggested the call was a hoax, according to the report by the Massachusetts Department of Early Education and Care, which licenses group homes

The staffers, inexperienced and overworked, were described as concerned and reluctant, yet nobody verified the orders with central office, nor did anybody check treatment plans for the two teenagers to be sure they were permitted to receive that degree of shock therapy.      

The damage was done before the staff at the JRC realized their “error”:

By the time a call was finally placed to the central office and staff members realized their mistake, one teenager had received 77 shocks, well in excess of what his treatment plan allowed, and the other received 29. One boy was taken to the hospital for treatment of two first-degree burns.             

The full account described by the Boston Globe is harrowing and beyond awful. The result of the state report is the suspension of seven JRC employees. But what I find telling is that because of the state investigation the following changes are supposedly being implemented at the JRC:

• Expanded training for staff — Many of the suspended employees had been working at the JRC for less than three months at the time of the August incident. High employee turnover is also suggested by Google search of the center, which pops up numerous ads for employment.
• Institution of new telephone verification procedures — Electric shock orders via telephone will continue to be part of the official procedure of aversive therapy, as is the incredibly extensive video surveillance of every moment of inmates’ lives.
• Elimination of delayed punishment — On its own, prior to this incident, awakening inmates through administration of electric shock was not a violation of procedure? Children were routinely hooked up to shock equipment even while they tried to sleep, apparently.

Supporters of JRC and its aversive therapy say it effectively changes behavior. Of course it does. Extended torture with no end in sight tends to do that. One of the axioms of torture is that anyone can be broken, given time and cruel enough methods. There are some inmates of JRC receiving electric shock that have been there for decades.

This post is part of a Blogging Against Aversives event. (The banner at the top of this post simply announces “Blogging Against Aversives, 1-14-2008″.) You can find links to writing from other bloggers on the topic here. Or check out Amanda Baggs’ extensive and well-indexed writing on aversives, behavior modification, JRC, and other related topics at Ballastexistenz. This post of Amanda’s is especially informative. Feel free to add links of other writings on this in comments. 

Cross-posted at The Gimp Parade

The latest Disability Blog Carnival is up at [with]tv where Connie Kuusisto (also blogging at Planet of the Blind) has compiled a collection of links on “Disability in the Media.” Check it out! 

Cross-posted at The Gimp Parade

The story of Katie Jones has been circulating slowly on disability listservs and blogs since the December 9 article in the Chicago Tribune. FRIDA provided an early link to the story, and since then Crip Chick, Shiva, Bint, Trinity, Brownfemipower have all addressed aspects of Katie’s story and the larger issues. Comments everywhere have been… illuminating.

I haven’t written about this before now because these sorts of articles from the mainstream media — this one involving children, parental control of a child’s well-being, disability prejudice, personhood and consciousness, health care in the U.S., living with the aid of machines, “special needs” schooling, and “right-to-die” versus the right to not be coerced to die — contain so much information that is either misleading, incomplete or biased that I can’t think where to begin.

Katie Jones is a second-grader in Lake County, Illinois, who has severe cerebral palsy and whose parents have sent her to school with a DNR order (Do Not Resuscitate) prominently attached to the back of her wheelchair. Taking that much at face value, the implications for Katie, her parents, her young classmates and school employees are complex and profound.

Add to that some mind-boggling facts about both the case and the media coverage of it: The Tribune article portrays cerebral palsy as a terminal disease, and while I’m not well-versed on the very wide range of abilities and medical issues people with CP possess, none of the many people I have known personally have ever been about to drop dead. So that portrayal is dangerously and cruelly incomplete. The Tribune article doesn’t discuss the fact that Katie apparently does communicate thoughts and feelings beyond those independently interpreted by people around her. You must dig to the caption of photo 4 at a sidebar link to even learn she is capable of expressing her feelings at will. And this, at the article’s end:

Before the bus arrived, Beth Jones weaved a French braid into the school girl’s long brown hair, while Allie [Katie’s four-year-old sister] held up a feeding tube. A machine could do the job, but that makes group hugs difficult.

Besides, anything that beeps isn’t allowed in the Jones house.

“When we took her home from the hospital, where there were so many machines, we made the no beeping rule,” Beth Jones said.

The group hug part is completely untrue. I’ve had a feeding tube for two years now, and I can say with absolute certainty that there is nothing about attaching a thin plastic tube to the end of it and running that tube to a machine that makes it hard to hug or be physically close to people. It’s actually less a problem for physical intimacy than an IV in the top of the hand would be, whether that IV is connected to a hanging bag or a machine. Feeding through the tube manually is a perfectly reasonable way to use the tube since basically this just entails using a giant syringe or holding the tube up and letting gravity allow nutrients to travel gently into the stomach, but attaching falsehood and phobia to machines that do this same task contributes to the pervasive ableist belief that people are better off dead than using medical technology for the long-term.

And the “no beeping rule”? There’s the real reason for the DNR right there. Better dead than using a machine that might make some noise.

I understand machines are scary. I get that because I’ve needed to make my own adjustments to them and also because I see it in peoples’ eyes every day. And I do understand people have different points at which they might choose not to live beyond, though I’ll add that there seems to be little reflection upon or respect given to the people who live quite happily beyond those points.

I’d like to hear much much more about the Jones’ “no beeping rule.” Is it because Katie is terrified of the beeping? Does the beeping represent an identifiable point beyond which Katie’s parents don’t feel they can handle her care? Or is the beeping too public? Too intrusive? Too medical? Why is an alarm that can signal a problem that should be addressed juxtaposed against the myth that without machines Katie will die “peacefully” from choking or suffocation? Why is this type of beeping so forbidden in our technological age where cellphones and dozens of other machines chirp at each of us all day long?

It’s not really the beeping, of course. And the answer to Trinity’s question:

Now why is [info that Katie shares thoughts via a communication device] tucked away in the photoshoot and not right there by the article, which is written in a way that suggests she is not aware what is happening?

seems to be that it didn’t seem relevant to the point of the article. Katie’s consciousness and feelings were not important in an article about whether or not she lives or dies and whether or not she gets to go to school in the meantime. What her thoughts about all this might possibly be is not once pondered in the article.

Further discussion can also be found at Wrong Planet, an online forum for people with Asperger’s Syndrome.

Cross-posted at The Gimp Parade

Ari Ne’eman, president of the Autistic Self-Advocacy Network (ASAN) that led the protest against the NYU Child Study Center’s “Ransom Notes” ad campaign, announces:

I am pleased to inform you that this afternoon the NYU Child Study Center announced that they will be ending the “Ransom Notes” ad campaign in response to widespread public pressure from the disability community. You can read that announcement here (at the NYU Child Study Center’s website). The thousands of people with disabilities, family members, professionals and others who have written, called, e-mailed and signed our petition have been heard. Today is a historic day for the disability community. Furthermore, having spoken directly with Dr. Harold Koplewicz, Director of the NYU Child Study Center, I have obtained a commitment to pursue real dialogue in the creation of any further ad campaign depicting individuals with disabilities. We applaud the NYU Child Study Center for hearing the voice of the disability community and withdrawing the “Ransom Notes” ad campaign.

Twenty-two disability rights organizations came together to ensure the withdrawal of this advertising campaign. Our response to this campaign stretched continents, with e-mails, letters and phone calls coming from as far away as Israel, Britain and Australia. The disability community acted with a unity and decisiveness that has rarely been heard before and we are seeing the results of our strength today. Our success sends an inescapable message: if you wish to depict people with disabilities, you must consult us and seek our approval. Anything less will guarantee that we will make our voices heard. We are willing to help anyone and any group that seeks to raise awareness of disability issues, but those efforts must be done with us, not against us. This is a victory for inclusion, for respect and for the strength and unity of people with disabilities across the world. It is that message that has carried the day in our successful response to this campaign. Furthermore, we intend to build on this progress, not only by continuing a dialogue with the NYU Child Study Center and using this momentum to ensure self-advocate representation at other institutions as well, but also by building on the broad and powerful alliance that secured the withdrawal of these ads in the first place. We are strongest when we stand together, as a community, as a culture and as a people.

Thank you to all of you who have made this victory possible. Remember: “Nothing About Us, Without Us!”

It didn’t look promising at first. This past weekend the images of the ads at the Child Study Center’s website were briefly taken down, but they were back up when the New York Times Sunday coverage of the ads quoted Koplewicz as saying the Center was determined to “stick with it and ride out the storm” and even expand the campaign to four other cities soon.

Kristina Chew, PhD., who blogs at Autism Vox and was also quoted in the NYT article, has been providing relentless commentary, coverage and linkage to dozens of blogs writing about the ads. To follow those posts chronologically go here, here, here, here, here and here.

Or check out Furious Seasons where Philip Dawdy makes some interesting connections in noting that Koplewicz co-authored a study of Paxil for the pharmaceutical company Glaxo SmithKline that apparently exaggerated benefits and downplayed adverse effects in treating adolescent depression. Koplewicz is one of dozens of co-authors of that study, but Dawdy wrote earlier this year:

“Some very smart people have taken on many of the issues around Study 329 and Paxil/Seroxat and, based upon the evidence, I’d have to say that it’s fair to assert that none of us in the patient world should trust anyone who had a hand in the study (unless they want to suddenly recant the work) on absolutely anything they say about mental illness. At a minimum, we should be wildly skeptical of any claims they make.”

Dawdy hasn’t been the only one to speculate about what corporate interests might have connections to the Ransom Notes ad campaign. Many commenters to the NYT article wondered about possible pharmaceutical backing for the ads, though I’ve seen absolutely no direct evidence of this. It seems to have been yet another case of do-gooders offering a message that didn’t take into account the experiences and feelings of those they set out to help.

In the Center’s announcement of the end of the ad campaign, Koplewicz writes:

Though we meant well, we’ve come to realize that we unintentionally hurt and offended some people. We’ve read all the emails, both pro and con, listened to phone calls, and have spoken with many parents who are working day and night to get their children the help they need. We have decided to conclude this phase of our campaign today because the debate over the ads is taking away from the pressing day-to-day work we need to do to help children and their families. They are and remain our first concern.

Our goal was to start a national dialogue. Now that we have the public’s attention, we need your help. We would like to move forward and harness the energy that this campaign has generated to work together so that we do not lose one more day in the lives of these children. We hope you will partner with us to bring the issues surrounding child and adolescent mental health to the top of America’s agenda. Work with us as we fight to give children and their families equal access to health insurance, remove the stigma that the term “psychiatric disorder” so clearly still elicits, and, most importantly, support the drive to make research and science-based treatment a national priority.

We invite all of you to continue this conversation online at a “town hall” meeting that we will hold early next year as we plan the next phase of our national public awareness campaign on child mental health. Look for details on our web site www.AboutOurKids.org.

Cross-posted at The Gimp Parade

In “Blackface/Yellowface/*face” Wheelchair Dancer muses about identity politics, performance arts and disability culture:

Despite years of discrimination and oppression and despite a history that is as appalling as the histories of other minoritized groups, there is no performing arts context for disability face. And even though exaggeration of certain physical aspects of certain impairments, there (perhaps fortunately) has not been a systematic reworking of these localized moments into a “tradition.” Any attempt at disability face would look like a party costume. And that’s kind of the impression I get when I see non-disabled types acting disabled roles.

So, over to you. What would disability face look like? Would you be able to distinguish disability face from disability drag? What would disability drag look like (and here I really do mean *drag,* as opposed to *dress up*). Could PWD with one impairment drag another? Could you drag your own impairment? Or would it have to be non-disabled people dragging disability? When does drag become disability face?

Could there really be a set of performances of disability in which we can separate an actor dressing up as disabled in order to create, with some degree of verisimilitude, a disabled role (because you *know* there are no disabled actors who can do this kind of stuff) from someone in disability face? Would it have to be literally a “face” to be disability face?

Other posts by Wheelchair Dancer on the intersection of race and disability include this, this, this and this.

Cross-posted at The Gimp Parade

The latest Disability Blog Carnival is up at Andrea’s Buzzing About, where the theme is “A Few of Our Favorite Things.” Check it out, or look through past carnivals.

Connie Kuusisto hosts the next one at [with]tv on Thursday, January 10, with submission deadline the Monday before.

Image description: Blue text lies over a line drawing of a old-fashioned back brace that look like an elaborate, longer corset. The text reads “the Disability Blog Carnival — a bracing event.”

Cross-posted at The Gimp Parade