Deaf Swimmer

Since seeing an announcement about USA Swimming’s selection criteria for the 2009 Deaflympic Games in Taipei, Taiwan, I was reminded of a deaf swimmer that I grew up swimming with in the 1970s. Her name is Shannon Brophy and she broke a world record for the deaf in the 200 meter breastroke back in 1977 at the Deaflympics in Bucharest, Romania. She came in third at the 2005 World Master’s Games in Edmonton in the 50 meter breastroke competing against non-deaf athletes of her age group. She grew up swimming with the North Edmonton Sharks swim club for many years and was the first swimmer with a disability that I knew as a child.

It is interesting to note that the Deaflympics, held every 4 years, and are the longest running multi-sport event excluding the Olympics themselves. The first games, held in Paris in 1924, were also the first ever international sporting event for athletes with a disability.

Disabilities among Refugees and Conflict-affected Populations

Women’s Commission for Refugee Women and Children releases the first major report to address the critical needs of this all-but invisible population

The Women’s Commission has released the first major report to address the critical needs of refugees and people displaced within their own countries who suffer from physical, sensory or mental disabilities.

The World Health Organization (WHO) estimates that between 7 and 10 percent of the world’s population lives with disabilities. It can therefore be calculated that between 2.5 and 3.5 million of the world’s 35 million displaced people are disabled. In fact, the number of people living with disabilities may be even higher among those who have fled civil conflict, war or natural disasters.

Yet sadly, people with disabilities remain among the most hidden, neglected and socially excluded of any population in the world today. They are often not counted in refugee registration drives or identified in data collection. Because of physical and social barriers, they are unable to access mainstream assistance programs offered to other refugees. Their potential is seldom recognized. They are often seen as a problem for their families and communities, rather than a resource. What’s more, the loss of traditional caregivers—extended families, neighbors—during displacement can leave them extremely vulnerable.

Report “Disabilities among Refugees and Conflict-Affected Populations”here

Hate Crimes Against People with Disabilities

A Bill currently before the Ohio Senate would add Disability as a protected category under the Ohio Hate Crime Law. Currently, slightly more than half of the U.S. States include Disability as a category, but 23 states (including Ohio) do not include disability as a protected class. The impetus for Bill 349 adding disability to the Hate crime law was an attack on Ashley Clark, an Ohio High School senior, earlier this year allegedly by two other teens. Clark was tied up, had her hair cut off, had her prom dress destroyed, beaten with a baseball bat, and robbed. She was allegedly targeted because of a mental disability.

Where hate crime laws that include disability as a protected category are in place, however, the real issue seems to be how do we determine when a  crime committed against a person with a disability is a hate crime? Here in Canada, for example,  the federal government reported that only 5 hate crimes against people with disabilities occurred in 2006, as compared to 506 hate crimes related to race and 80 related to sexual orientation.

Here some reflections on Christopher Newell

read more here

NZ bioethics council

Hi All,

Looks like a really interesting blog going on here! Rob asked me to make a couple of comments on the NZ Bioethics Council’s report of pre-birth testing Who gets born? A report on the cultural, ethical and spiritual issues raised by pre-birth testing. To quote from its website ‘Toi te Taiao: New Zealand’s Bioethics Council, was formed with the aim of enhancing New Zealand’s understanding of the cultural, ethical and spiritual aspects of biotechnology, and ensuring that the use of biotechnology has regard for New Zealanders’ values.’ The spur for the recent report was the recent decision in NZ to publicly fund Pre Implantation Genetic Diagnosis for ‘high risk’ couples. It’s up to government to decide how, if at all, the Council’s advice should be translated into policy.

The report’s a conscientiously small ‘l’ liberal document. Many of its recommendations could have been directly cribbed from the pages of John Robertson’s book, Children of Choice. The emphasis is very much on facilitating parental choice, with health professionals given the role of supplying parents with the information they need to make choices consistent with their values. Saviour siblings are OK – Parents can attempt to conceive saviour children naturally so it would be wrong to stop them using PGD to improve their chances of having a child who could provide cord blood etc that could save a sibling. Parents should be allowed to use PGD to avoid conceiving children with health problems or to have pre-birth tests to avoid giving birth to such children.

“Disabled models to compete”

BBC3 will soon be airing a show called Britain’s Missing Top Model in which eight contestants described as “Some of Britain’s most beautiful disabled women” compete to for a photoshoot to become Britain’s top disabled model. Is this a step forward or a step back for women with disabilities? May be it is both. Do women with disabilities have the same right to have their bodies exploited as women without disabilities?

Almost 30 years earlier, Harlan Hahn wrote powerfully about amputee devotee relationships. (Did you know that there are several sex magazines devoted exclusively to amputee women’s bodies?) Hahn’s work was critical to our current understanding of the social construction of disability. Other amputee women have suggested that there are two kinds of potential sex partners, those who find their amputation attractive and those who find it repulsive. In their view, it is healthier to have a relationship with someone who thinks it attractive than someone who finds it repulsive.

Disability dolls

Here’s one for niche marketing: ‘disability dolls.’

A girl’s relationship with her doll is complex, but one of the mechanisms involved in such a relationship is mirroring. The doll represents a smaller self that the child nurtures, and this nurturing is then inwardly directed. Mothers often worry about the idealised image presented by dolls – and especially the likes of Barbie, which has unlivable proportions. The worry is that their daughters will develop a sense of inadequacy – that they can’t ever measure up to the image represented by the doll; upon which their hopes and sense of self are projected.

So imagine what it’s like buying a doll for a child with Down’s.

So, here’s a business that fills that niche, and turns a tidy profit in doing so. Here’s an excerpt from the article:

Many years ago in Germany, [Helga Parks, who makes the dolls] says, she watched the face of her late niece, Angela, who had Down’s, light up when she was given a doll with facial features like her own to play with. Angela, who died at the age of 9, pointed to her doll and said: “This is me.”

Parks is also looking into starting a line of bald dolls, for kids undergoing chemotherapy.

Drugging the Elderly

Pharmaceuticals, especially in the United States, are increasingly part of everyday life, leading to what the critical philosopher Nikolas Rose has called “our neurochemical selves.” The making of this type of self is, in part, driven by the self, but is silently though powerfully aided by hefty doses of advertising. One really gets the sense of this dynamic and the power of advertisements at work when you confront older advertisements, which always seem so, well, Out Of Place, in part, because they were making different selves from the ones of today.

There is one type of “self” that commands far less public signs and signals of and for the making of the neurochemical self: the elderly self, especially those with dementia and alzheimers. Because they do not have the ability/choice to decide what medications they take, especially at the later stages of the illness, advertising is not so helpful. This does not mean, however, that they are not taking psychiatric drugs. The New York Times has recently run a piece on the topic Doctor’s Say Medication is Overused in Dementia, which takes a frank look at prescription practices in nursing homes. While I am not against the use of some psychiatric medications for the elderly (I recently decided to put my mom who has severe alzheimers on an anti-depressant and it has helped, significantly), the use of cocktails for these patients is frightening. Most of the cocktails include anti-psychotics, which often induce many neurological symptoms of their own, are very harsh, and as the NYTimes piece reports, do not even seem to help these types of patients.

Christopher Newell died

Another blow to the disabled people rights movement. Christopher Newell from Australia a very close friend of mine was found dead.
see news article here

We worked together on bioethics and disabled people rights issues for many years and well I will miss him greatly.
Details about him from his university webpage
here

Adam Bender

This eight year old Kentucky boy is an above knee amputee following cancer that he had when he was one. Amazingly, he has been able to play sports like baseball, football, and soccer. He does not where a prosthesis because it slows him down when he is playing. This article also has a video of him playing baseball. He plays as a catcher while squatting down on his right leg and is able to pop up from that position without any strain. When he hits the ball he is able to hop nimbly to first base and then continue running the bases after being handed his crutches by his coach. What an inspiring athlete!

Please sir, may I laugh at your disability?

What’s so funny? I have to admit that I think disability is pretty funny. I don’t think that I mean this in any disrespectful way (but I guess some people might take it that way). It seems to me that it is almost inherently funny, because it is so much a universal part of the human condition and yet people struggle so much coming to terms with it. Most of us would agree that there are some bad aspects to laughing about disabilities. Sometimes, it can be a another way of trying to use an us-them dichotomy to try to distance and protect ourselves from our own fears of impairment. Sometimes, it reveals an underlying hatred, contempt, or ambivalence.

But humor can also be an important way to explore our feelings and understandings of disability. John Callahan’s cartoons provide some good examples. Callahan’s cartoons give us a chance to explore a lot of our thoughts and assumptions. Callahan’s work addresses a lot more than disability, it is about the human condition and social construction. On first glance, his  ”Squawtism” joke may seem to be just bad pun, but it says a lot more about the social construction of disability. Of course, Callahan may only get away with his disability humor because he is quadriplegic. Do you think people would as feel comfortable laughing if he wasn’t a card-carrying disabled person.

One of the best current sources of disability humour as well as other disability culture these days is OUCH!, BBC’s outstanding disability culture podcast. Ouch! is not just about being funny, but most of it is served up with a health helping of humor, such as it’s regular Vegetable, Vegetable, or Vegetable? game, where the hosts attempt to guess a caller’s disability by asking 20 questions over the telephone. Ouch is podcasts are available on i-tunes and the BBC Website, and some bits and pieces can be found on youtube. This Ouch! podcast is one that questions politically correct disability euphemisms.

 

Body Worlds — A Visitor’s Tale

I enjoyed my visit to Body Worlds 1 at the Telus World of Science in Edmonton thoroughly.  The whole experience was exciting and interesting.  A comment made by my girlfriend when we talked about the exhibit a few hours later over dinner captured an experience that I think many people will share–”I went in looking forward to being at least a little offended, but I spent the whole time being amazed!”  It was only a day or so later that a point of contention even crept into my mind.

Censoring Joy

Celebrations last week for the legalization of same-sex marriage in California were joyous indeed. It was marked as a great triumph for couples like Del Martin and Phyllis Lyon, who have been together since 1953, and who were first to be married in California under the new law. In any situation where the press meets sexuality, however, the question of choice arises: why Martin and Lyon? What does a ‘normal’ gay marriage look like, anyway? We might optimistically think that the choices surrounding the publication of images of potentially controversial material are not spelled out in such explicit terms, but in this case, at least, we might be surprised. Interestingly, it has been from proponents of gay marriage that the most blatant censorship has come. Presumably out of fear that images of “guys in gowns” might scare off even more liberally-minded Americans, yet unsure of what gay marriage might spell for the norms and values of the state, leaders of the California gay/ lesbian community have been underscoring the importance of self-censorship at same-sex marriages. Jack, from Feministe, explains why she isn’t celebrating:

That’s right, folks: no camp here. No gender non-conformity, either. And definitely no guys in gowns.

Why? Because the marriage equality movement is largely predicated on the notion that us queers are just like “everyone else,” meaning mostly white, mostly middle-class or up, gender conforming monogamists. You know, the non-threatening queers. The rest of us should apparently find a nice closet to go hide in for a while, lest we threaten the rights that are apparently meant for the more upstanding, respectable members of the LGsomeotherlessimportantletters community…..

A New Zealand report on the cultural, ethical and spiritual aspects of pre-birth testing by Toi te Taiao: the Bioethics Council

some far reaching recommendations such as
Recommendation 9
There is insufficient cultural, ethical and spiritual reasons to prohibit the use of preimplantation
genetic diagnosis for sex selection for social reasons such as ‘family balancing’.

more hereTechnorati Tags: Genetic testing, preimplantation, gender, sex selection, ethics, New Zealand

Advertising Autism

Since I’ll be reading Roy Richard Grinker’s Unstrange Minds: Remapping the World of Autism over the next week or so, here’s a kinda pre-post on some related things on my mind.

The first is a series of 30-second tv ads that have sprung up over the past year or so focused ostensibly on raising awareness about autism (but implicitly on donations for research on it). Below is one of them, featuring some pretty tired-looking rock legends that forms a part of VH1’s “Rock Autism” campaign; I also saw my first one on Canadian tv the other day –probably a function of the fact that I don’t watch enough tv to have caught it earlier. This one just rolled a bunch of 1 in x stats sequentially, starting with the chance that a child (your child) will be abducted by a stranger, and ending with the 1 in 150 stat that has become the current mantra about autism. Some of these cross the line from awareness-raising to paranoia-inducing, and they leave me with a bad feeling in the pit of my stomach; in this respect, they contrast with most of the longer (2-5 minute) autism awareness videos you can find on YouTube by searching under that title. Don’t know if I’m alone on that one.

The second is a series of posts over at Autism Vox by Kristina Chew, the latest of which you can link to right here. These raise questions about talk of an “autism epidemic” and sub-topics under that general heading, such as the putative link between autism and vaccines. Chews posts on this go back 18 months to one called “What if there is no autism epidemic?“, which offered a commentary on a Huffington Post article by journalist David Kirby. Chew is worth reading on this and other autism-related issues.

What Sort of Art? Steve Kurtz and BioArt

Steven Kurtz, an art professor at the State University of New York at Buffola, is one of the current practitioners of BioArt, which uses living matter as an art medium. He gained special media attention by being the focus of a bioterrorism investigation 2004-2008. In May 2004, police responded to an emergency call by Kurtz (his wife had died due to heart failure), and got suspicious about the laboratory equipment in his home. Kurtz used this equipment to prepare a performance (“Free Range Grain“), which allowed participants to test food for the presence of genetically modified organisms. He was temporarily arrested, being suspected for bioterrorism (which nowadays in the US carries prison sentence for up to 20 years). These charges were soon turned into mail and wire fraud charges, because of – in fact harmless – bacteria that University of Pittsburgh geneticist Robert Ferrell had sent to Kurtz. This April, Kurtz was cleared from all charges. (Ferrell was coerced to plead guilty to misdemeanor charges and fined.)

Kurtz is a founding member of the Critical Art Ensemble. Check out their BioArt projects reflecting on modern genetics, biotechnology, and reproduction, such as Flesh Machine, Society for Reproductive Anachronisms, Cult of the New Eve, and GenTerra. Some of Kurtz’s BioArt work touches upon war and military research: project Marching Plague involved throwing benign bacteria at guinea pigs, referencing a British military experiment. The recent installation Immolation shows the effects of incendiary weapons on human skin samples.

There is also a recent interview with Kurtz on the bioterrorism investigation. And here we see him conducting a subversive and dangerous art performance:

 

The Disability Rights Movement & the Legacy of Poets with Disabilities

By Jillian Weise

This essay explores the Disability Rights Movement and searches for a poet affiliated with that movement. The sit-in at the San Francisco Federal Building in 1977 marked a defining point in the movement. The sit-in resulted in the ratification of Section 504 of the Rehabilitation Act, and paved the way for the Americans with Disabilities Act of 1990. What poetic conversations were created by the sit-in and disability culture of the 1970s? How do those conversations persist in the contemporary moment? Who is writing disability in persona? And who is writing disability from an authentic perspective? Finally, what is the future of disability studies within the field of poetry?

more here

Minds and Societies

Well, after managing to play Keystone Kops for the last 10 days as our departmental office has been moved without mercy across campus, I’m giving up. Featuring lost and collapsed book carts, on-the-wall shelving that quickly became off-the-wall, collapsable shelving, and many other adventures in chaos, I’m dropping out of this whole experience-thing: to Philadelphia and then Montreal, Toronto and Kingston. And as part of my almost unlimited capacity for distraction from actually writing a talk for the upcoming Summer Institute on Cognitive Science that is being hosted at UQAM in Montreal, June 28 – July 6th, which is, after all, the pre-text for my secret escape, I have convinced myself that it’s more important to know what everyone else is talking about here than to know what one will talk about oneself, and so devoted most of my attention today to checking out some of the details. The theme for the institute is Minds and Societies, and the two-week program features about 50 pretty damned interesting people. Heading the line-up is my favourite atheist philosopher, Dan Dennett, whose special guest appearance in Dickie D’s rap peez, blogged right here previously, must rank as an all-time high in his cameo appearances. Dennett will lead a public conference on the first Friday night of the conference: From Animal to Person: How Culture Makes Up our Minds. Other speakers include

Frank Keil, Kristine Onishi, and Rebecca Saxe (mind and developmental psychology)
Richard Byrne, Dan Kelley, and Elisabeth Pacherie (more theory of mind)
Jesse Prinz, James Blair, and Josh Knobe (morality and cognitive science)
Larry Sanger, Deb Roy, and yours truly (multi-agent cognition)
Pierre-Leonard Harvey, Pierre Levy, and Toru Ishida (collective intelligence)

As if that ain’t enough reason spontaneously to drop all one’s other plans and head immediately to Montreal, the Institute just happens to coincide with the Montreal Jazz Festival. Damn it, don’t just sit there: go!

What sorts of people? Empathy deficit disorder — do you suffer from it?

the story is here

“Coming Out”, by See Hear

What does coming out suggest to you? Well, prepare to be surprised! This is a smart, funny short film created by the UK’s See Hear and directed by Louis Neethling that itself came out last year. Sign(s) of the times. Watch at least the first 90 seconds … and see if you can stop watching more.

What can one say, except that coming out is not always easy, even in the most sympathetic of families …

Hat tip to Disability Studies at Temple.