New books on theology and disability

I haven't read a book on disability and religion since The Disabled God: Toward a Liberatory Theology of Disability by Nancy Eiesland came out in the mid-'90s. That's a great book, by the way, but it's exciting to see three brand new books on disability and religion -- and a thoughtful review introducing them over at The Christian Century.

The three books discussed by Brian Volck are:

Theology and Down Syndrome: Reimagining Disability in Late Modernity by Amos Yong,

Spirit and the Politics of Disablement by Sharon V. Betcher, and

Vulnerable Communion: A Theology of Disability and Hospitality by Thomas E. Reynolds.

Volck looks at each book separately but here's an excerpt on his general thoughts on the topic:

These authors present twin challenges to theologically informed, able-bodied Christians. First, they challenge us to move beyond the relatively easy tasks of redesigning church sanctuaries and striving for visible diversity in liturgies and committees, and to begin engaging the far more difficult mystery of desiring and entering into communion with one another. What liturgical and ecclesial practices can we embrace that will make clear our human interdependence in Christ without allowing us to merely collapse into trivializing sentimentalities like, "Everyone is handicapped in their own way"? We may face greater challenges in becoming interdependent with persons who have intellectual disabilities than with those with physical disabilities. The practices and experience of Jean Vanier's L'Arche communities have much to teach us in this regard.

Second, disability raises thorny questions about traditional interpretations of Christian doctrine: Does God will severe disability? Does salvation through faith imply personal intellectual assent? What does it mean to be formed in the image of God? Does disability persist in the resurrection of the body? Once again, severe intellectual disability may present the greatest challenge.

Yong, Betcher and Reynolds do not present systematic theologies of disability. Instead, they offer stepping-off points for theological reflection. More important, they challenge readers to interrogate their own lives and assumptions, moving discussions past the self-satisfying mantras of inclusion and diversity and into new, potentially frightening and grace-filled territory.

While you're over there, check out an article on musician Curtis Mayfield, the legendary Chicago bluesman who was paralyzed in an accident while on stage in 1990 and died in 1999.

Call for submissions on feminism, disability & activism

From the f word:

The Feminist Activist Forum is calling for submissions for a zine on feminism, disability and activism:

Disability has been treated as an unglamorous side-issue within feminist activism.

We are looking for writing and artwork that addresses attitudes to disability within the UK feminist movement.

• Have you experienced exclusion from feminist groups and events because you have a disability?
• Are there any areas of feminist rhetoric that you find dis-ableist and alienating?
• Do you have ideas about how feminist groups and events can be made more accessible and inclusive?
• Can you tell us about positive experiences of access and inclusion?

Anything else on the subject also welcome!

We are interested in personal accounts, poetry, art, research and practical tips.

Please email drafts, abstracts, ideas, or questions to disability@feministactivistforum.org.uk

Deadline for drafts: 30th January 2009

7 Wheelchairs reviewed by NYT

Image description: Color photo of Gary Presley's book cover for "7 Wheelchairs: A Life Beyond Polio." A close-up photo of one back wheel of a manual wheelchair.

Gary Presley's new book, 7 Wheelchairs: A Life Beyond Polio, receives a rave review from the New York Times:

Those who prefer their miracles in subtler and more secular form might turn instead to Gary Presley’s extraordinary memoir of a life after polio. No one rises from a wheelchair and walks again in this book, yet the miracles clearly abound.

Mr. Presley was part of the last generation of polio patients in the United States: he became sick in 1959, right after receiving a booster shot of the old Salk vaccine. Whether the illness was from the vaccine or despite it was never clear, and in the end made little difference: within a week both legs were paralyzed, both arms drastically weakened, and he could not breathe.

The primitive respirators of the time saved his life. For months, an iron lung encased him like an oversize Tin Woodsman’s costume, doing the work his own muscles could not do. He was flat on his back, his world limited to what he could see in a small mirror affixed to the top of the machine. (With the mirror tilted correctly, he could watch “noitartnecnoC” and “drowssaP” on television.)

Eventually he graduated to a smaller, more portable lung — a metal carapace that let him sit upright. At night a rocking bed turned him violently on his head and back again to force air in and out of his lungs. Then the hospital sent him home to a small isolated Missouri dairy farm. He was 18 years old.

Mr. Presley writes with candor and precision about every facet of the next five decades. He learned to breathe without machinery, but he never walked again. A voracious reader, he skipped college and settled into a clerical job in a local insurance office. His wheelchairs became faster and sleeker, but his parents helped him dress and bathe until they died. As for toileting: Mr. Presley’s chapter devoted to the mechanics of urination and defecation in the face of paralysis is a tour de force that should be required reading for all.

Who could predict that, finally living on his own in his late 40s, he would fall in love with one of his hired aides? Or that, now approaching 70, his anger and depression faced and pretty much conquered, he would be happily married, healthy, vigorous, productive, in his words, a lucky man? A miracle, indeed.

Congrats, Gary!

Check out the 37th edition of the Disability Blog Carnival

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 Alas, A Blog

Culture, chaos theory and choice

So, in my BADD post the other day, I explicitly noted the evil of our U.S. foreign policy in Iraq -- our war that, among other things, disables Iraqi children, many of whom will live their lives in a society with such a damaged infrastructure that their basic needs will never (not for one day) be well met. I know that some people trying to understand disability culture and the idea of impairments as not inherently tragic will be further confused by this. (No, being disabled is not a tragedy, yes, being disabled by an occupying army is an outrage and tragedy.)

The current discussion in comments at Alas, A Blog, started by WheelchairDancer's wonderful post "On Making Argument: Disability and Language" (also with a separate comment trajectory at her personal blog) struggles with this, or with several readers' inability to mesh together the ideas that while being or becoming disabled is not a choice, it is experienced by many people as normal or even filled with various human joys.

The confusion persists, I think, because disability is seen as this separate thing that happens, not as part of the whole spectrum of possible valid and ordinary life experiences. Maybe the breadth of what disability includes causes part of the confusion: we are the person born with spina bifida and the old fart losing his hearing, we are the person born to quadriplegia in a car crash and the cancer survivor who lost a limb while winning the battle, we're the child born with Down Syndrome and the dyslexic movie star, we're the institutionalized schizophrenic and the woman taking anti-depressants to keep moving through her busy day.

Pitting one life experience against another is ludicrous and unfair, of course, but in those comparisons I just made, the first examples are routinely seen as tragic and the second ones are all sometimes -- for better or worse -- seen as either common and ordinary or as triumphs of luck, strength and will. Neither characterization sums up the individual life or experience with disability. With adequate and just support, any disabled individual might lead an utterly ordinary life where his impairments are only one aspect of who he is. Or it might be the very thing that completely defines him. It might inspire him to amazing heights or leave him paralyzed with bitterness. (Yeah, note the metaphor there. Discuss, again, if you like.) People are different like that.

Two people can have the same job, with one hating it miserably and the other blithely content. Neighbors living side-by-side for sixty years can lead incredibly different lives. All life, but maybe especially disability, is chaos theory in action. Any outcome might be true.

The thing that makes the war in Iraq and the children it disables an outrage and tragedy is the degree of human choice. Someone somewhere (or many someones) makes a decision, and it leads to this event causing pain to other people. To value freedom and the individual means to value and support choice wherever possible and to be against human actions that limit freedom and choice of others. I don't find that contradictory to also embracing the disability experience as one that is in many ways fulfilling for many of us, even though few of us got here by choice and some of us have been injured at the hands of others.

The Speed of Dark

Back in June of 2005, anticipating the 15th anniversary of the ADA, I wrote about "The Excuse of Architecture" and cited a New Mobility story of pre-ADA prejudice, discrimination and really bad customer service. One commenter compared the phenomenon of disabled people being asked to leave restaurants (because no one wants to see them eat) to the prejudice moms face when breastfeeding in public. I disliked the comparison because the prejudice against disabled people is for being who they are while the prejudice against nursing mothers was for a (reasonable and necessary) activity they want to perform.

Although I am outraged by the way mothers in our culture are hassled for breastfeeding, I was, frankly, offended that discrimination based on disabled people's existence and simple presence was compared to discrimination based on anyone's actions, regardless of what those actions might be. It seemed reductive of my personhood and that of the members of any group of people denied access to public places because of a group identity, real or perceived.

I stand by that, so far as it goes. But the novel The Speed of Dark by Elizabeth Moon has me rethinking the complex interactions between identity, behavior and prejudice.

I've been aware of the connection before, of course. I've used a wheelchair or scooter for all mobility for 24 years now, and body language is necessarily different when you move through the world sitting down. Also, I've spent the last couple years experiencing how the use of a trach and ventilator have effected how I communicate with others and how people do or do not adjust to how my communicating differs from the norm. For example, my ability to speak past my trach partly depends upon the position of the trach. I can speak better when I lean forward, and I typically need to play with the trach a little or cock my head to control air flow past my vocal cords. This ends up sacrificing a lot of conversational eye contact, but because delays in response or an uneven voice that cuts out also complicate communication I find that behaving a little strangely is most efficient. As if I could emulate "normal" anyway, right?

Anyway, my ability to consider disability and behavior as often separate issues has been a matter of relative privilege, since a wide variety of impairments directly involve behavior or are diagnosed principally based on behavioral norms. The Speed of Dark is all about behavior and whose behavior gets to be seen as normal and whose is considered abnormal, wrong, and in need of being fixed.

It's the fictional story of Lou Arrendale, a middle-age autistic man, working and living in a slightly alternate world where people his age have had developmental assistance and workplace accommodations to mainstream them into much of society. Lou is a bit of a relic because younger generations have access to infant genetic manipulation that apparently nullifies any processing and behavioral differences caused by autism.

The bulk of the story is told in Lou's voice. I'll be honest -- the very first time I picked up this book, I didn't get very far, and it may have been Lou's voice that I wasn't ready to hear. That was over a year ago. When I picked it up again recently, I was immediately immersed, couldn't put it down, and became very invested in Lou's particular world view. Author Elizabeth Moon, who has an autistic son, won the 2004 Nebula Award for The Speed of Dark. It was also a finalist for the Arthur C. Clarke Award despite the fact that this isn't a science fiction story.

There's plenty of plot to the novel: Lou's boss pushes him and other autistic employees to take an experimental cure, Lou has a stalker hostile to him (and disability in general), and Lou also has a love interest. But it is the first-person character study of Lou, his analytical, philosophical nature, and his quest to be accepted for who he is that captivates. Despite portraying an experience she doesn't live herself, Moon has done her homework on autism. In an essay on the topic she writes:

What is it like to be an autistic individual? Only autistic individuals know for sure. Interviews with autistic people, their essays and books, all suggest that the autistic experience is just as varied as the non-autistic experience. Some people are happy. Some people are not happy. Some people have close friends. Some do not. The similarities imposed by the condition do not impose an emotional tone or even a core personality in the Myers/Briggs sense....

One of the things which impressed me about our son, even before he could communicate in signs, gestures, or words, was the healthy quality of his emotional life. Yes, he screamed when he was upset, and I would have preferred a "Mom, I don't want to do that." But the things he enjoyed were reasonable, healthy things to enjoy: food that tasted good, music he liked, running around on the grass on a spring day. There was nothing weird about what he liked. His dislikes were harder to understand, but made sense once I realized that his sensory input was different than mine, and his responses were stronger. He felt hot when I barely felt warm. Tags in clothes (that I find only mildly irritating) bothered him a lot. He liked some colors more than others. Certain textures and flavors in food bothered him more. He liked some people and didn't warm up to others. These are perfectly normal responses in a small child--just on a different scale. His likes and dislikes tended to be more intense (typical of an earlier developmental stage: infants are usually very intense in their likes and dislikes.)

Through the plot, Moon tackles two of the thorniest questions regarding disability: What is "normal" and what's the value of a "cure"? Lou thoughtfully explores both ideas:

All my life I've been told how lucky I was to be born when I was—lucky to benefit from the improvements intervention, lucky to be born in the right country, with parents who had the education and resources to be sure I got that good early intervention. Even lucky to be born too soon for definitive treatment, because—my parents said—having to struggle gave me the chance to demonstrate strength of character.

What would they have said if this treatment had been available for me when I was a child? Would they have wanted me to be strong or be normal? Would accepting treatment mean I had no strength of character? Or would I find other struggles?

The construction of the novel and the metaphors used work with Lou's voice to help a non-autistic person relate to what Lou thinks and feels, what confuses and alarms him. The uncertainty of the cure Lou's boss is trying to coerce his employees to take and the information imbalance about the treatment which the boss exploits work together as a metaphor for the confusion Lou has in understanding how to navigate society and most social interaction. We can all relate to not knowing how to make a complicated decision, and in the novel's context we understand and relate to the confusion Lou faces because of his autism. That's assuming that the portrayal of Lou rings true for people with autism, of course.

Lou's hobby is fencing, and the detailed portrayal of his study and practice to improve his fencing skills works as a convincing metaphor for how treacherous and complex navigating workplace politics or nurturing a romance can be. Strategy and understanding the "opponent" are key. Fencing becomes a tool for seeing Lou's personal genius and charm as well as glimpsing what the life perspective of an autistic person might be.

Big spoiler follows. Act accordingly: The last 30 pages of the plot didn't resolve as I might have hoped, but from a literary perspective -- and a philosophical one -- Moon makes the story as compelling and thought-provoking as possible. Shorter version: I hate that Lou took the cure. I understand that his decision opens the debate up more than his deciding to accept himself as he is. On a personal level, I even relate well to the idea of using "the cure" to try something different and challenge yourself so completely. When I play with the philosophical question of a cure for my own impairments, it is not becoming normal or even being healthier that is compelling to me. It's enticing to consider taking the option that does not currently exist and challenges everything I know and am.

But I hate hate hate that "normal" wins. And I look forward to hearing what others thought of the book and topics it presents.


Other links about the novel:
2003 review in January magazine
2003 review at infinity plus
2005 review in Blog Critics Magazine

The DaDa Awards

Liz Crow and her Roaring Girl Productions is my biggest blogging failure. Liz and I first exchanged emails well over a year ago and I volunteered to interview her and discuss her work. I linked to clips of one of her award-winning short films, Frida Kahlo's Corset back in July on the 100th anniversary of Kahlo's birth, but have never managed to cough up interview questions for Liz to answer.

And I still haven't done that. Nor have I actually seen her full productions beyond the generous info at her website (that info includes film clips, stills, and scripts, by the way). But let me list a few of the many things that fascinate and thrill me about her work:

1.) Her documentary film The Real Helen Keller explores the famous woman behind the iconic deaf-blind celebrity. Here's the film script (.pdf), which is an excellent read by itself:

Narration: Helen was one of the first people to understand that charity was not the answer. She recognised that disabled people lived in poverty because they were excluded from jobs and that poverty in turn created illness and impairment. She argued that what was needed was radical change.

In an era when venereal disease was a leading and unmentionable cause of blindness, she was willing to campaign on this in the press.

Georgina Kleege (author of Blind Rage): People were scandalised when she wrote about it, because she had to write about venereal disease and sexual promiscuity and issues she wasn’t supposed to think about. But at the same time she talks about the issue obviously as a woman’s issue, a woman’s health issue. She also perceived it as an economic issue because she understood that more affluent women would have access to better healthcare, so for her it was information that needed to be given to less affluent women, so that they could make demands of whoever was providing healthcare to them. So she had a mind, it seems to me, that made these sorts of connections that other people weren’t making.

2.) Her short experimental film Frida Kahlo's Corset.

3.) Her project to design the Access Tripod, a tool that would allow wheelchair-using filmmakers to run a handheld camera themselves instead of directing someone else to capture their creative vision.

4.) And her experimentation with ways of making films more accessible to all viewers. Anyone who has ever tried to use the captioning feature tacked onto a commercial film DVD has experienced how separate the accessibility features are from the film itself. Sometimes the captions are ridiculously inaccurate*. Sometimes text is unreadable or descriptions incomplete. Often, it's not an available feature at all. In my family, that means one person who is hearing impaired misses out on much of the dialogue and the shared experience is lessened for us all.

Liz's company is exploring new ways of using captioning, sign language and audio description (ACS) as an integral part of the creative process of her films. Does it make me a film geek that I find this incredibly exciting? Maybe.

Anyway, Liz Crow has been short-listed for a DaDa Award under the category of "New Media" and it's time for the public to vote. The DaDa Awards are sponsored by NWDAF, the North West Disability Arts Forum, based in Liverpool, England. NWDAF is dedicated to promoting equal access to art for all disabled and deaf people, from celebration of disability culture within art to employment to full audience access.

Anyone can vote. Vote before November 27. And check out the other nominees in all eight categories too.

Other links about Liz's work:

Netribution Film Network interview with Liz Crow about Frida Kahlo's Corset

21 Things to Remember, a short film by Liz Crow (link is to "clip 1" with "clip 2" available below it providing audio description)



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*One of my all-time favorite films, Jesus of Montreal, has captioning where something like this frequently occurs: The character on screen clearly says, "I'm 18 years old" while the text just below reads "I'm 23 years of age."

Disability journals

The Fall 2007 issue of the Society for Disability Studies' journal, Disability Studies Quarterly, is available free online. The topic is "The State of Disability in Israel/Palestine." It sounds like this particular issue will remain available for free, and there is some talk of expanding that access to all future issues, which would be great. I hope that would include past issues as well.

The latest issue of the Review of Disability Studies: An International Journal is available in .pdf and .doc formats here.

The second issue of the Journal of Literary Disability, on the topic of "Disability and the Dialectic of Dependency" is available here.

The third issue of Wordgathering: A Journal of Disability Poetry is available here.

And, because it might interest writers, M/C Journal: A Journal of Media and Culture, which focuses each issue around a one word theme (the current issue is about "error"), has an upcoming issue that will explore the meaning of "able". Submission info here.

And finally, the CFP for the Society for Disability Studies' annual conference, in New York City, June 18-22, 2008, is available here.

Feel free to use the comments to link other relevant journals or CFPs.

The History of My Shoes and the Evolution of Darwin's Theory

Disability is all about adaptation. That's not news to me. As performance artist Neil Marcus has said, "Disability is an art—an ingenious way to live." It's improv, sometimes all day long, when out in the public environment built primarily for nondisabled folks. I suspect that's not news to most disabled people either.

But Kenny Fries' newest book, The History of My Shoes and the Evolution of Darwin's Theory, combines musings on adaptation and the life and science of Charles Darwin with personal memoir and travel diary in unique and thoughtful ways. One thing Fries notes, particularly in regard to Darwin and his success as a scientist, is that interdependence (and sometimes dependence) is a natural part of human interaction and achievement:

Darwin's journey toward the theory of evolution itself was an act of reciprocity. His social situation, his finances, his family and friends, led to his collecting success, as well as to the publication of his theory. He used his family members in his experiments, and was assisted by neighbors. To arrive at the ideas at the core of On the Origin of Species, Darwin depended on the theories of others, such as Malthus, Lyell, and Wallace. Was Wallace's lack of social standing the reason he is not remembered today for cofounding evolutionary theory?

As man advanced in civilization, Darwin noted, small tribes became united into larger communities. Each individual began extending his social instincts toward all members of the tribe and eventually to members of the same nation, even though these people were personally unknown to him. Darwin concluded that once this point was reached, only artificial barriers prevented an individual's sympathies from extending to the members of all nations and races. (pp 163-4)

In terms of disability, interdependence (and dependence) has been relentlessly framed by society as weakness stemming from tragic imperfection. Yet in many other situations, interdependence is called "backup" or "teamwork." Collaboration. Ingenuity.

Fries explores the difference in perception that has traditionally determined that disability and the adaptions people invent in the face of impairments are uncool despite many disabled people's use and reliance on cool cutting edge technology:

"When you think disability, think zeitgeist," writes disabled journalist and news broadcaster John Hockenberry. Humanity's specifications "are back on the drawing board, and the disabled have a serious advantage in this conversation." We live in a time when the disabled are on the cutting edge of the social trend of the broader use of technology. Wireless technology and electronic gadgets are ubiquitous. The meaning of what it is to be human is wide open.

Who decides riding a motorcycle is cool whereas riding a wheelchair is not? Who decides drinking through a straw is sexy but breathing through a respirator is not? Who decides using a personal computer is natural but using a Braille 'n Speak, a variation of a PC, is not?

What we learn by adaptability may tell us more about the natural ways in which all of us can best flourish in an increasingly interdependent, complex, and confusing world. (p 180)

My favorite parts of The History of My Shoes are Fries' hikes up mountains, through Thailand, and around the Galapagos Islands, where he observes and relates what he sees to his life experiences with his own physical impairments. I think there's often the idea that creatures in nature evolve into or toward perfection and that the struggles they have to survive are due to life's cruel nature, environmental hardship and human interference. And that's all part of it on a grand scale. But the individual creatures Fries observes (or Darwin wrote about) persisted despite "imperfection." And adapted individually when they could. Just like us.

Both Simi Linton and Stephen Kuusisto have blogged about Fries' book, Linton adding her own thoughts on adaptation and Kuusisto (also quoted in a blurb on the book's back cover) looking at the poetry within Fries' prose.

Wagadu journal on disability

The summer volume of the Journal of Transnational Women's & Gender Studies is a special issue on “Intersecting Gender and Disability Perspectives in Rethinking Postcolonial Identities.”

And it's all available online here.

Frida Kahlo -- Celebrating the 100th anniversary of her birth

Artist Frida Kahlo was born on July 6, 1907, in Mexico City, Mexico, to a Mexican Indian and Spanish mother and Hungarian Jewish father. She died at age 47, on July 13, 1954, but she is, quite possibly, the most world-famous disabled woman living or dead. Her art is her fame, as well as her relationship with fellow Mexican artist Diego Rivera and her communist politics. Deeply personal, her art is filled with imagery of impairment and physical pain.

There are indications that in addition to childhood polio, a devastatingly injurious tram accident at age 18, and the loss of a limb in her later years, Kahlo was born with some spinal condition such as spina bifida.

Along with the paintings shown here, I've got a collection of links more interesting than anything I can write about Kahlo:

Her paintings are catalogued and described fairly well (in both English and Spanish) here, as part of an excellent site all about Kahlo, her life and her work.

This article, "The Trouble with Frida Kahlo" by Stephanie Mencimer, published in 2002 in Washington Monthly explores how Kahlo -- and all female artists -- needed to have a tragic or sensational personal story to enter the male canon. Mencimer's analysis begs for a disability studies rebuttal, particularly comments like this:

Some feminist art historians have struggled against such reworkings of women artists, but Kahlo's pop-culture mania revives it with a vengeance. Kahlo certainly facilitated this process by painting herself as the quietly suffering female. In every possible sense, the mass-culture Kahlo embodies that now-poisonous term: victimhood. She was the victim of patriarchal culture, victim of an unfaithful husband, and simply the victim of a horrific accident. But that's probably one reason why she's so popular. "People like to see women as victims," says Mary Garrard, a professor of art history at American University.

And this:

Many of her surgeries may have been unnecessary. Even Herrera notes, "If Frida's physical problems had been as grave as she made out, she would never have been able to translate them into art." Kahlo's close friend, the famous doctor Leo Eloesser, believed that she used her many surgeries to get attention from people, particularly from Rivera. There's no doubt that she was obsessed with him in a way that should make feminists cringe. She also made several suicide attempts and spent much of her adult life addicted to drugs and alcohol.

Though the article is well worth a read for it's look at how Kahlo's inability to bear children is widely interpreted as a tragedy when she may well not have seen it as such. And for when Mencimer notes this:

One wonders what the postal service was thinking when it put Kahlo on a stamp. "Visas are denied to [foreign] artists with Frida Kahlo's politics," notes Chadwick.

Here is, I think, a more developed and disability-studies-friendly analysis of Kahlo's self-portraiture. (That's a link to the main page of a Frida site. Check out the sidebar feature labeled "Frida and her obsession of self-portraits.")

For true disability studies analyses of the 2002 film Frida, starring Salma Hayek, read Marta Russell's CounterPunch review and a wonderful discussion between Harilyn Rousso and Simi Linton at DisabilityWorld. Both movie reviews note the obliteration of any depiction of Kahlo's childhood polio and it's early effects, with the tram accident framed instead as the life-altering tragedy to her physical health. Also, her recovery from that accident is made complete in the film so that a tango between Kahlo and another woman is not complicated by what would have been an interesting limp. The Rousso-Linton discussion ranges beyond the movie itself to look at use of the word "cripple," sexuality, and class and disability.

Rousso says:

Remember the scene in the garden where she's sitting in her wheelchair a few months after the accident? To me, this is the quintessential stereotype about the person who is in an accident or illness--that their main desire, preoccupation is to be able to walk again. She is sitting in the garden, her parents arrive and she gets up out of the wheelchair, takes her first steps and suddenly becomes almost nondisabled.... I found it shocking when we finally do see her using a wheelchair in an ongoing way, which is about an hour and a half into the film. We are given no sense of the progression of her disability. Until then, her disability was not shown as affecting her daily life. It was shown as affecting her painting - both her decision to paint and at least some of the content of her paintings, but not the details of her life. She was by and large portrayed as a "non-disabled disabled women." Then suddenly well into the film she is shown as quite significantly disabled.

Here's a link about Liz Crow's short experimental drama Frida Kahlo's Corset. "Corset" refers to the orthopedic back braces Kahlo wore because of her impairments.

From a 2005 exhibition, here's the Kahlo site for the Tate Modern Art Museum in London.

Finally, this PBS site on the film The Life and Times of Frida Kahlo includes five of Kahlo's works of art made into image maps with additional info available to mouse rollover.

Links lead to visual descriptions in English and Spanish: The four paintings in this post are The Broken Column (1944), Tree of Hope, Remain Strong (1946), Henry Ford Hospital (1942) and Self-Portrait with the Portrait of Doctor Farill (1951).

Thanks to Penny for the heads-up on Frida's birthday.

Wiki frenzy

There are several new wikis focusing on disability information that have popped up recently. Like with all wikis, they're a work in progress open to anyone who wishes to contribute. Here are the links:

Disapedia
Wikibility Rights
Civil Rights WikiSpace, with dis info here and here

Australian academics suspended over criticism of thesis on laughing at the disabled

A short summary of the story from The Courier Mail:

TWO academics have been suspended without pay for six months for criticising a thesis which they said poked fun at disabled people.

John Hookham and Gary MacLennan, both senior lecturers in creative industries at Queensland University of Technology (QUT), criticised the PhD work in an April article in The Australian newspaper.

The thesis is a film starring two intellectually impaired men and is entitled Laughing at the Disabled.

The academics said the men were put in cruel situations they did not understand - one in which they were sent to a rural pub to tell locals they were looking for romance, provoking advances from a drunk woman.

They said the scenes provoked raucous laughter at a university screening.

"The purpose of humour is not just cruelty ... we don't think it's funny to mock and ridicule two intellectually disabled boys," the pair wrote in the article.

An excellent detailed report from The Australian:

The project had been developed in conjunction with the disability group Spectrum and the two men depicted in it as well as their parents were comfortable with the idea, having had experience with Noonan in the making of Unlikely Travellers [a film about a group of disabled people who had gone to the Sahara Desert, which has been purchased by the ABC and will be screened later this year].

In addition, the university's ethics committee had cleared the project.

But after seeing the rushes, MacLennan, a lecturer at the university, said: "I have a handicapped child and I pray to God that my child never comes into contact with someone like you." Also present was Hookham, who questioned the use of disabled people.

That night, Noonan emailed MacLennan and Hookham, asking them to expand on their responses.

MacLennan emailed back, saying: "It's quite simple, Michael, I was brought up by my mother - one of the uneducated Irish peasantry. She was the best human being I have ever met. She taught me not to mock the afflicted. I had to go to a university to see the mocking of the afflicted being celebrated under the spurious rubric of 'post-structuralism'."

A few weeks later, Noonan gave a lecture that involved scenes from Unlikely Travellers, and at the end of his lecture he explained that the two disabled men involved in the film were present. Indeed they were, and they answered questions from the class. What happened next depends on who you listen to.

According to various blog entries written by students, some of them found the experience positively challenged their view of the disabled, as here were two men quite open about their disabilities and prepared to speak openly and honestly.

But others claimed the experience shocked and embarrassed them.

Here's a round-up of some bloggers on the events.

Here's a link to some videos on the academics' position, an excerpt from Noonan's previous work Unlikely Travellers, and some disability advocates on the controversy.

Thoughts?

Poetry: Robert Pinsky

Below is a poem by Robert Pinsky, who served as U.S. Poet Laureate in the late '90s. The new Journal of Literary Disability also has an essay, "Disability Haunting in American Poetics" by Sharon L. Snyder and David T. Mitchell that explores Pinsky's writings on disability in American poetry:

Pinsky’s essay about the thematics of haunting could be found culpable for its own repressions in the midst of formulating a theory of national identity that is based upon eradicating the conflicts of the past. In many of his examples, the haunting of the American poet is identified with the sudden eruption of ‘nightmarish figures’ that disturb the language of poetic revelation. Upon close reading, many of Pinsky’s haunting figures appear marked by cognitive and physical disabilities that upset the more abstract and utopian longings of American ideals. Because haunting operates as a barely discernible phenomenon (a ghostly presence often concretizes an otherwise repressed content), disability, as a metaphor for what Toni Morrison calls “unspeakable thoughts unspoken” (1989, 1), haunts Pinsky’s poetry of haunting. Better yet, the poets of which Pinsky writes may be fully aware that disability is their topic of contemplation, meaning that only Pinsky’s essay can be said to be haunted by the specter of disability.

So, in the above essay combined with Pinsky's poetry on psychiatrists some interesting ideas emerge. Here also, a psychiatrist comments on the poem below.

An excerpt from "Essay on Psychiatrists" by Robert Pinsky:

III. Proposition

These are the first citizens of contingency.
Far from the doctrinaire past of the old ones,
They think in their prudent meditations

Not about ecstasy (the soul leaving the body)
Nor enthusiasm (the god entering one’s person)
Nor even about sanity (which means

Health, an impossible perfection)
But ponder instead relative truth and the warm
Dusk of amelioration. The cautious

Young augurs with their family-life, good books
And records and foreign cars believe
In amelioration—in that, and in suffering.


IV. A Lakeside Identification

Yes, crazy to suppose one could describe them—
And yet, there was this incident: at the local beach
Clouds of professors and the husbands of professors

Swam, dabbled, or stood to talk with arms folded
Gazing at the lake ... and one of the few townsfolk there,
With no faculty status—a matter-of-fact, competent,

Catholic woman of twenty-seven with five children
And a first-rate body—pointed her finger
At the back of one certain man and asked me,

“Is that guy a psychiatrist?” and by god he was! “Yes,”
She said, “He looks like a psychiatrist.”
Grown quiet, I looked at his pink back, and thought.


Read the whole poem here.

Marie Chouinard

bODY_rEMIX/gOLDBERG_vARIATIONS

Look for the video at the link above under "works" (video NSFW). A description from the website of choreographer Marie Chouinard's dance company:

In this new work by Marie Chouinard, the company’s ten dancers execute variations on the exercise of freedom. Often, the dancers appear on points: on one, two, and even four at a time. In a spectroscopy of the gesture, we also see them using different devices – crutches, rope, prostheses, horizontal bars, and harnesses – which at times liberate their movements, at others fetter it, and at still others create it.

This use of accessories gives rise to unusual bodily shapes and gestural dynamics and opens onto a universe of meticulous and playful explorations in which solos, duos, trios and group work, in their labour, pleasure and invention, echo the human condition.

An aesthete beyond norms, Marie Chouinard presents her ideas on the way the indefinableness of the Other and the flagrancy of Beauty brush up against one another through an interpretation of Johann Sebastian Bach’s Goldberg Variations. Subtle and extravagant, sumptuous and wild, the work’s movements plumb the insoluble mystery of the body, of the living being.

Gas lamps as angels

Lisel Mueller's poem on Monet is part of her Pulitzer prize-winning collection, Alive Together. Years ago I saw a great presentation of Claude Monet's work at the Art Institute of Chicago, and in walking through the exhibit with the headphones and listening to the narration about the progression of his life's work, I was able to see how cataracts altered his vision and changed the images he painted. Monet's Impressionism was dedicated to capturing light and color as he saw it, and by looking at his early and late works you can see the startling and honest differences in his vision. His later paintings are not as pretty, with muddier, yellower color tones. And yet, they do continue to show what the eye sees -- his impaired vision still provided a valid study of sight, color and light.

From the link just above, a description of how Monet's vision impairment affected his art:

Monet was both troubled and intrigued by the effects of his declining vision, as he reacted to the the foggy, impressionistic personal world that he was famous for painting. In a letter to his friend G. or J. Bernheim-Jeune he wrote, “To think I was getting on so well, more absorbed than I’ve ever been and expecting to achieve something, but I was forced to change my tune and give up a lot of promising beginnings and abandon the rest; and on top of that, my poor eyesight makes me see everything in a complete fog. It’s very beautiful all the same and it’s this which I’d love to have been able to convey. All in all, I am very unhappy.” – August 11, 1922, Giverny.

From another analysis:

Many of these later paintings verge on the abstract, with colors bleeding into each other and a lack of rational shape and perspective. For example, "The House Seen from the Rose Garden, 1922-1924," is an explosion of orange, yellow and red hues, but leaves the reader barely able to discern the vague shape of the house in the background.Monet's diminished sight opened up a new vista for his art, one in which memory and the unseen play a more important role than the perceptions of direct experience.

In a certain sense, we must learn to see these last pictures of his garden at Giverny not as increasingly confused by his inability to see clearly, but as pictures in which Monet's memory traces of the site he had planted and tended and lived with so long - the paths, the plants and the waterways of his garden - came to replace the ever more fragile images of his failing eye.

In Mueller's poem, Monet is represented as resisting the idea that his vision must be treated medically. If not embracing vision impairment, he is at least exploring it for what it offers that is new and different.

Monet Refuses the Operation
by Lisel Mueller

Doctor, you say there are no halos
around the streetlights in Paris
and what I see is an aberration
caused by old age, an affliction.
I tell you it has taken me all my life
to arrive at the vision of gas lamps as angels,
to soften and blur and finally banish
the edges you regret I don't see,
to learn that the line I called the horizon
does not exist and sky and water,
so long apart, are the same state of being.
Fifty-four years before I could see
Rouen cathedral is built
of parallel shafts of sun,
and now you want to restore
my youthful errors: fixed
notions of top and bottom,
the illusion of three-dimensional space,
wisteria separate
from the bridge it covers.
What can I say to convince you
the Houses of Parliament dissolve
night after night to become
the fluid dream of the Thames?
I will not return to a universe
of objects that don't know each other,
as if islands were not the lost children
of one gray continent. The world
is flux, and light becomes what it touches,
becomes water, lilies on water,
above and below water,
becomes lilac and mauve and yellow
and white and cerulean lamps,
small fists passing sunlight
so quickly to one another
that it would take long, streaming hair
inside my brush to catch it.
To paint the speed of light!
Our weighted shapes, these verticals,
burn to mix with air
and change our bones, skin, clothes
to gases. Doctor,
if only you could see
how Heaven pulls earth into its arms
and how infinitely the heart expands
to claim this world, blue vapor without end.


Actually, my favorite poem from this collection of Mueller's is "What the dog perhaps hears," which muses about the keen canine ability to hear what we can only imagine. Both poems seem similar to me in the way they explore ability, inability, and what differences can reveal.

Well, crap

The good news is the possibility of a collaborative book with son Jamie. I look forward to that.

Choosing a college

Sitemeter tells me that someone wandered here with the Google phrase "I'm a disabled teen looking for the right college" despite the fact that I've never said anything that would be specifically helpful in that regard. But since I did find the right college for myself back in 1987 when I was a disabled teen, I'll give it a shot and invite anyone else with suggestions to add them as well.

My entire reason for being compelled to check out Arizona State University as a school to attend came from when I was a shy freshman high school girl and overheard the only other wheelchair user at my school (a senior guy) mention ASU while we were riding the short bus to school one morning. Or maybe he was talking about UofA, but I got it in my head that Arizona would be hospitable in ways that Illinois was not.

I had the grades to get in most places, but never considered anything Ivy League-ish because the ADA didn't exist then and I was well-aware that the older the building, and the more historical the building, the less it would be useful to me. I don't recall how many schools I visited my senior year-- not so many since I was fixated on ASU -- but, inexplicably, I visited Wisconsin's Whitewater campus too. No contest because of one issue -- snow.

My Dad, my twin sister and I scouted out ASU on Halloween day of my senior year in high school. I recall this because Bert and Ernie were the first two individuals I met on campus and this no doubt effected my decision. Giant costumes of Sesame Street characters somehow epitomized the joys of college for me, I guess.

We met with Disabled Student Services and they arranged a tour of campus (hosted by a disabled man) and an accessible dorm room. I stared at palm trees, which I had never been in the presence of before. I ate actual Mexican food made by people who are not bland Scandinavians afraid of cooking with spice. It was really an obvious choice, though made with lots of naivete. And it was the right one for me. Any doubts my Mom and Dad had about me zipping off to live halfway across the country when I did not even have a motorized chair until the week before college began, they mostly kept to themselves and waited to see how far my youthful enthusiasm would carry me.

Presumably wiser now, this is what I'd look for in choosing a college for a disabled teen:

• Accessibility, both architectural and attitudinal. You don't want to spend too much time fighting to get in the building or to be able to take the test, so institutional commitment to access is not enough -- it should already be substantially in place.


• Actual disabled students visible on campus going about their lives like everyone else. This includes temporarily disabled students successfully getting around because the school has a means to help them. Golf carts with student chauffeurs were part of disability transportation services at ASU. A university capable of dealing with sudden impairments of its students is more likely to be flexible enough in its accessibility services to accommodate a wider variety of needs. As a scooter user, the repair department was absolutely crucial to me.


• Diversity programs that include disability as a category of diversity along with race, sexual orientation, etc. Better yet, classes or programs in disability studies would show that someone at the school has a clue.


• Bathrooms in several places around campus that are not only accessible, but comfortably accessible. Don't enroll somewhere you'll be miserable peeing at for the next four years, it just isn't worth the stress.


• Ditto for general living accommodations. And the grocery store that you'll need to buy ramen noodles at needs to be handy too.


• Public transportation that is relatively reliable.

That's my list, for now. Anything else I didn't think of?

Books for the new year

Happy New Year everyone!

Like every book lover I know, I've got a towering (and growing) pile of books waiting to be read. I thought I'd share a brief list of some books from that pile that I plan to read in 2007. All of these are disability-related and currently wedged between my full bookshelf and dresser. If you've already read them, are interested in discussing them, or happen to be the author, this is your heads-up to what I hope will be interesting future discussions here on wherever these books take us.

The Speed of Dark by Elizabeth Moon -- Moon won the Nebula Award in 2003 for this novel told from the perspective of a young autistic man. Normally a writer of military sci-fi, this story apparently differs from the author's usual genre and was prompted because she has a child with autism.

Geek Love by Katherine Dunn -- This will be a reread for me, but I haven't been back to it since I first found it at the fabulous feminist bookstore Women and Children First in Chicago when it was originally published in 1983. An amazing novel about carnival freaks and disability told in first-person by Olympia Binewski, a bald, humpbacked albino dwarf.

Crip Theory: Cultural Signs of Queerness and Disability by Robert McRuer -- From the Amazon description: "McRuer examines how dominant and marginal bodily and sexual identities are composed, and considers the vibrant ways that disability and queerness unsettle and re-write those identities in order to insist that another world is possible."

Planet of the Blind by Stephen Kuusisto -- Fellow disability blogger Stephen's first memoir.

My Body Politic by Simi Linton -- Author of the excellent Claiming Disability: Knowledge and Identity tells her personal story.

Blackbird Fly Away by Hugh Gallagher -- A personal memoir.

By Trust Betrayed: Patients, Physicians, and the License to Kill in the Third Reich by Hugh Gallagher -- A definitive book detailing the eugenics movement against disabled people in Nazi Germany. Gallagher also wrote FDR's Splendid Deception.

Wicked by Gregory Maguire -- I read this while in the hospital and unable to blog about it. An alternative telling of The Wizard of Oz from the Wicked Witch Elphaba's point-of-view. Disability and physical difference everywhere.

I also hope to read Jen Burke's A Life Less Convenient and Stephen's newest book, Eavesdropping, but I haven't bought them yet.

Finding the language, making the connection

I've written in the past about being a disabled person before disability studies provided a real forum for discussing social issues about living with a disability. When there were no other disabled girls in my high school and only black studies or women's studies to use as models of systematic and group oppression, and when there were no books available on disability from a social model perspective, I was the kid applying these other theories to disability in my high school and college papers.

Some instructors accepted this, some didn't or tried to lead me back to the "real topic." My immediate family were able to see much of what I did, but I didn't have the language then to really discuss it with them. If I recall correctly, the tabloid paper version of the Ragged Edge -- known as The Disability Rag then -- was my only proof as an isolated teen that my experiences and the socio-political connections I was making about group oppression weren't all in my head.

There's a discussion going on over at Alas, A Blog that reminds me a lot of all this, though the topic is sexual abuse of men or boys and how their experiences do and do not fit into the feminist analysis of sexual abuse and violence. Richard Jeffrey Newman, the author of the post in question at Alas writes what I think is a thoughtful, sensitive and brave piece about his experiences of sexual abuse as a child and where the experiences of men like him can be discussed when the discourse of feminism on the topic is rightfully focused on how men and our patriarchal culture abuse women and girls.

I don't want to talk about sexual abuse here, exactly -- though I will note that there's an article in a recent hard copy of New Mobility that specifically talks about disabled men's problems with abuse, sexual and otherwise. Unfortunately, that particular article isn't available online. (Anyone wanting further info on it can email me, if they wish.)

I'm struck by some of what Newman says about the failure of feminism to "fit" or accommodate his experiences of child sexual abuse as a man. Similar to what I've said about myself above, Newman used feminist theory and writing to articulate his experiences:

Indeed, feminism has been central to the way I understand the world since my late teens-early twenties, when reading Adrienne Rich’s On Lies, Secrets and Silence was the only thing that convinced me I wasn’t crazy (a few years later it was Andrea Dworkin’s Intercourse).

Upon reading Adrienne Rich's feminist book at age 19, Newman recalls:

I don’t know why, but those words pushed a button somewhere in me, and I began to ask—in fact, I actually heard a voice in my head asking—"But what about me? What about what happened to me?"

I remember this sensation of finding the common thread in books about minority oppression and recognizing that they both did and did not speak about my life. There was an excitement, both intellectual and deeply personal, mixed with a bewildered disappointment that what was so obvious a connection to me was nowhere actually in print. The writings by black folks and feminists about their social exclusion and oppression made complete sense and I recognized so much of my own experiences and yet disabled girls were nowhere included as a topic of these common experiences. Disability was invisible as a minority or oppressed category and my individual story wasn't explicitly seen mirrored anywhere. I was grateful for what I had found, but still felt isolated and excluded.

Newman's experienced isolation from the heart of feminist discussions of sexual abuse extended to the use of the pronoun "she":

Nonetheless, the paradox was silencing, so silencing, in fact, that a few years later—and this was after I’d started telling people I’d been abused—in a training session at a different when day camp, when the male session leader told us he was going to use “she” as the generic pronoun referring to kids who might choose to tell us they’d been sexually abused, I found myself unable to confront him about the way that choice rendered me and my experience, not to mention the experiences of the other men and, perhaps more importantly, the boys at the camp who’d had the same experience, invisible. Yes, part of why I didn’t speak up had to do both with the very public nature of the forum I’d be speaking in and the adversarial nature of what I’d be saying, but I also couldn’t speak up because I didn’t have the words, the conceptual vocabulary not only to say “This isn’t fair,” but also to point out that boys’ experience of abuse, my experience of abuse, needed to be understood on its own terms and not as a perhaps anomolous subset of the experience of girls; and one reason I did not have that vocabulary was that it was not to be found in the feminism I’d been reading.

Again, I recognize the strange sensation of having the conversation so unjustly pass him by, like a bus slowing down to pick up passengers along a road, but failing to see you as you hurry to get onboard too. (Or, perhaps even more aptly, the bus lacks accommodation to even let "your kind" get on.) The crowd moves on without you and your search for the many little connections that make up the whole of your humanity suffers another small blow. The haunting part is the uncertainty that can taint the sense of connectivity in personal experience to that particular larger whole. For me as a disabled woman, my sense of womanhood has in the past been damaged by the inability of feminism (and sometimes, individual feminists) to accommodate disability and its contingent experiences into discussions and actions of feminism.

And yet. I find my heart hardened a bit to any complaint from a man about the use of feminine pronouns as exclusionary. This is not to say I don't see the problem Newman explains of his gender being specifically excluded from full participation in feminist discussions of sexual abuse. And I recognize that specific exclusion feels as isolating for Newman as it has for me in other contexts. Rather, my allegiances are divided here, which I also find disturbing.

Women the world over and throughout time have found masculine pronouns exclusionary of their experiences, even -- and especially -- in the most sacred of texts and associations. After all, God is traditionally "he." I have my full share of rage about the continued use of masculine pronouns used generally. Feminism is supposed to be something of an antidote to that. So, how much can feminism be expected to accommodate Newman and other men as victims of sexual abuse in theory or active practice? How to make room for them in what would seem to be the obvious forum for their experiences of abuse by men and the patriarchal structures that deny them another forum to fully express their pain?

And to the extent that male sexual abuse victims will always be partly isolated from the full embrace of the feminist community because their gender is not central to the purpose of feminism, what does this disconnect say about the quest for disabled women to be embraced by the causes and understanding of feminism? Or latino women? Or transgender folks?

On the surface, it doesn't seem like there should be any conflict between feminism and the needs of disabled women as a group, but the rhetoric of feminist reproductive "choice" does not currently include a full understanding or support of how disabled and other minority women experience this choice differently in our society. More broadly, "choice" for feminism and most other liberal groups includes the "right to die," which fails completely to account for the very real dangers (and, in fact, experiences) for many disabled people of being coerced to die.

If feminist discussions of sexual abuse necessarily focus on female experiences, to what extent is the failure to help or support male victims a flaw of feminism? Can it be expected to find a way to better accommodate these men, or would that make feminism something else entirely? Is feminism compatible with the general range of needs of disabled women? If it isn't able to accommodate the meanings of choice when applied to the disability experience, that surely is a failure of feminism to embrace disabled women. So, what does that mean?

Acknowledging that he is writing in feminist space at Alas, Newman says (italic emphasis is his):

I do not believe that feminist discourse is a place where male survivors ought to expect either to speak or to be heard in a way that places our experience at the center of whatever is being discussed.

Is Newman sadly correct? Is not being the center but simply being marginally included enough for abuse victims, disabled women, transgender feminists, and other minorities to whom feminism would seem obligated to serve? What do you think?