Interesting article on the construction of disability in China by Yee-Fui Ng (Sessional Lecturer and PhD Candidate, Monash University Law School). The abstract: This article explores the tension between the Chinese government’s strong engagement in disability rights and simultaneous focus on ‘quality births’, which results in the abortion of disabled foetuses. At a broader level, the author examines the politicised and cultural construction of disability in China by scrutinising how the ‘disabled’ are defined, administered, policed and governed in postsocialist China.
Category Archives: Norms and normalcy
Call for Support – Rally May 15 from Noon – 1 pm
42 million in cuts to services for the disabled in Alberta!
Over the past several months you may have been aware that Persons with Developmental Disabilities (PDD) has been directed, along with many other social programs, to make arrangements for budget cuts. These cutbacks are happening alongside an effort by PDD to better regulate funding models for people. These changes, unfortunately, make what we need to present at this time more complicated. Administrative changes around assessing support needs is co-mingled with the severe funding cutbacks being experienced across the province of Alberta.
Disability is a political issue not a personal one –
The Right to Not to Work: Power and Disability by Sunny Taylor
“The disabled are viewed with sympathy as victims of “bad luck” who will simply have to accept disadvantage as their lot in life, not as an identity group that is systematically discriminated against. Unlike sexism and racism, which are perceived to be significant social problems, disability falls under the social radar and disablism is not recognized as a damaging or even particularly serious form of prejudice.” The public remains unconvinced that the struggle for disability rights is actually their sturrgle as well….
The entire article and self-portrait can be found here:
http://monthlyreview.org/2004/03/01/the-right-not-to-work-power-and-disability
Hope is NOT a Plan
Canadians with disabilities are about one and a half times as likely to be victims of violence as other Canadians. People with disabilities in Canada have civil rights on paper but not in practice. Canadian citizens, everyday, have their civil rights ruthlessly violated by their government. This has to be stopped, because Hope is Not a Plan!
Why The Michener Centre Must Close
Recently, the Alberta government announced the future closure of the Michener Centre, an institution that houses people with developmental disabilities in Red Deer, Alberta. The centre is home to some 125 Albertans with developmental disabilities and has been in operation since the 1950′s.
Special Issue of the International Journal of Disability, Community & Rehabilitation (IJDCR) with the theme What Sorts of People Should There Be?
Special Issue of the International Journal of Disability, Community & Rehabilitation (IJDCR) with the theme What Sorts of People Should There Be?
Edited by Gregor Wolbring, Associate Professor Community, Rehabilitation and Disability Studies, Department of Community Health Sciences, Faculty of Medicine, University of Calgary, Canada is now available.
Parents try to force surrogate mother to abort their disabled baby
Blogger Cassy Fiano writes about parents who try to force their surrogate to abort their disabled baby. Cassy is has two sons, one has Down Syndrome.
Crystal Kelley wanted to give the gift of a baby to a family who couldn’t have children. She also needed the money that surrogacy brings. And so, she ended up becoming a surrogate mother to a couple in her state of Connecticut who had three children but wanted more. The first half of the pregnancy was friendly and happy, with Kelley and the parents communicating regularly.
Then there was an irregular ultrasound. After several more ultrasounds, the picture was clear: this was a baby who would be born with some disabilities. She had a cleft lip and palate, a cyst on her brain, and a heart defect. The baby’s parents immediately began to pressure Kelley to have an abortion, claiming it was the more “humane” option. Now, most decent people wouldn’t consider it humane to rob a child of her life simply because she might have a disability. This was the way that Kelley felt, and she refused to have an abortion
Pride Week Panel on Reproductive Autonomy: Control of Sexuality
Here’s the poster for the upcoming panel, Reproductive Autonomy: Control of Sexuality that we’re hosting this Wednesday as part of the U of Alberta’s Pride Week. The sesssion will feature Lise Gotell and Lane Mandlis as speakers, with Moyra Lang and Rob Wilson performing an interpretative dance (ok, perhaps not, … but we’ll do something useful … or at least will be there). Please print and post, or distribute electronically. Text only version included as well.
Reproductive Autonomy: Control of Sexuality A Panel Discussion at Pride Week, University of Alberta
Wednesday March 20, 2013 at 3:00 pm – 4:00 pm in Education South Building at the University of Alberta the Living Archives on Eugenics is sponsoring a panel discussion featuring Professor Lise Gotell, Chair of Women’s and Gender Studies and Dr. Lane Mandlis, with Moyra Lang, and Professor Rob Wilson. ASL interpreting services will be offered at this event. Find us on Facebook http://www.facebook.com/#!/events/270019033131796/?fref=ts
Articles and Audio clips on the closure of Michener
Headlines read: Michener Centre formerly the Provincial Training School (PTS) for Mental Defectives closes – celebration for some but not for everyone
A series of articles have been written about the closure of the Michener Centre. Living Archives team members, Leilani Muir and Bruce Uditisky have commented to reporters about their reactions to the closure. Both applaud the decision but many others criticize the decision to close Michener. The loss of jobs and the disruption for current residents are concerns for supporters of the institution. However, amidst mixed reaction the Michener stands as a reminder of our recent history of eugenics and the institutionalization of thousands of individuals. The shift towards a more inclusive society and away from isolation and initialization is a change towards recognizing and perhaps even appreciating human variation.
Here are links to several different articles: Continue reading
Fashion and Medical Appliances
Recent surges forward have been made in creating clothing and accessories that help women “feel gorgeous in their own skin — and spark conversation about a previously taboo topic,” that of external medical appliances that are necessary for some conditions.
http://www.cnn.com/2012/08/03/living/disability-fashion/index.html
In the article, interviewees discuss how they were always advised to hide their conditions, internalizing feelings of shame and stigma. In some cases, girls described their self-image of suffering from “cyborg anxiety,” and acknowledged that dependency on medical appliances becomes “a huge part of your identity.” New designs allowing these to be fashionably integrated into everyday wear allows wearers to share their stories “in a non-medical space.”
Also of interest are comments on the bottom of the article.
What sorts of academics should there be?
from Carl Elliott, “How to be an academic failure: an introduction for beginners”, The Ruminator Review, but also: whitecoatblackhat.com/academicfailure/
Carl visited us up in Edmonton a few years ago, courtesy in part due to the work he was doing at the time on big pharma and also as a member of the What Sorts Network. In addition to enjoying and learning much from his public lecture, we also had a great informal, roundtable session with about a dozen people that was focused on his then-developing work on a particular case in psychopathology that involved a senior professor who had murdered his spouse.
I also had a fun dinner with Carl in which he confessed his slight ill-ease with me. This was caused by the fact that every time I started speaking, I managed to disappoint his expectation that I would sound just like The Dude. “Damn it, how can that be?” he wondered aloud, almost with sufficient pathos for me to consider peppering our conversation with some of the many lines I know from heart from The Big Lebowski. But despite the short-term fun this would have involved, I thought that this might actually exacerbate the problem in the long run, so I resisted the temptation. “But that’s just like, your opinion, man.” I still hear a small voice inside my head say.
Here’s how his recent article, with all its sage advice on academic failure, begins:
How to be an academic failure? Let me count the ways. You can become a disgruntled graduate student. You can become a burned-out administrator, perhaps an associate dean. You can become an aging, solitary hermit, isolated in your own department, or you can become a media pundit, sought out by reporters but laughed at by your peers. You can exploit your graduate students and make them hate you; you can alienate your colleagues and have them whisper about you behind your back; you can pick fights with university officials and blow your chances at promotion. You can become an idealistic failure at age 25, a cynical failure at 45, or an eccentric failure at 65. If failure is what you’re looking for, then you can hardly do better than the academic life. The opportunities are practically limitless.
Call me arrogant, but I like to think I have a knack for failure. Having started and abandoned one abortive career, participated in the dissolution of a major bioethics center, published dozens of articles nobody has read and given public lectures so dull that audience members were actually snoring, I think I have earned my stripes. It is true that I am not an alcoholic yet. I do not have a substance abuse problem, and no university disciplinary proceedings have been brought against me so far. I am still a novice at failure. Many other people in my own field have succeeded at failing in a far more spectacular fashion than I have, some of whom are rumored to be living in South America. But I am learning. And I think I have something to contribute. Read more
Sweden Moves to End Forced Sterilization of Transgender People
Sweden, “one of 17 [countries] in the European Union,” may soon change a law that requires transgendered people to become sexually sterilized if they decide to officially change gender. Sweden has made moves to repeal the law in January, only to be stopped by the Christian Democrat Party. However, this party has recently changed their mind, allowing the repeal to go through.
http://motherjones.com/mojo/2012/02/sweden-moves-to-end-forced-sterilization-transgender-people
This move was partially in thanks to an online petition, by AllOut (
http://allout.org/en/actions/stop_forced_sterilization
), which gained 80,000 international signatures to repeal the law. However, the date for repealing the law is still pending.
Countries that still require sterilization include France, Italy, Romania, Poland, Greece, and Portugal. For a map outlining the current status of European sterilization, you can link here:
http://motherjones.com/mojo/2012/02/most-european-countries-force-sterilization-transgender-people-map
A reply to Allen Buchanan on Cognitive Enhancement
The interview with Allen Buchanan has spawned numerous discussions throughout the web, including Brendan Foht’s response. In it, Foht looks to address Buchanan’s claim that the nature of our evolution in some sense justifies cognitive enhancement, and the existence of other technologies.
It is strange that Buchanan thinks that opponents of genetic engineering who find something worth preserving in our nature must believe that evolution is analogous to some sort of “master engineer.” Considering that evolution is a slow process by which biological order spontaneously emerges from highly complex networks of highly conserved genes, there would seem to be an obvious analogy for it in the conservative view of society.
Another article on the topic by Allen Buchanan can be found here. And you can watch a lecture by Buchanan through Youtube, titled “Using Biotechnology to enhance normal humans: Why nature isn’t good enough.”
If It Ain’t Broke, Don’t fix It, But What if It’s Enhanced?
Gary Karp, who sustained a spinal injury in 1973, which prevents him from using his legs states that although his spine is technically broken, he is not. Although he confesses that he would want to walk again, he clarifies that he would not want to do so at any cost. He writes (click here for the entire blog post):
Well, it’s not about whether I want to walk. Of course I want to walk. That is, if I could walk the way I did before my injury. Easily, without fatigue, secure in my balance, painlessly. That’s a pretty tall order (especially given that I’m six foot two!).
The problem with paralysis, Gary argues, is that it is viewed as a thing to be fixed and thus people with injuries like Gary’s are viewed as damaged or broken. He writes:
If the prevailing view of paralysis—or having a disability of any kind—is that the most important thing is to try and fix people (because, of course, what else could broken people want?), then how will I be viewed as the whole person I am—in the context of my paralysis? If I’m damaged goods, then I’m a person whose life can only be improved—much less be a meaningful and satisfying life—if someone repairs my brokenness.
His view on technological advancements like the exoskeleton is this:
What, then, of the exoskeleton? I don’t see it as something that will fix me, that will fill in something horribly missing in my life. After 38 years I’m so thoroughly adapted that not being able to walk is normal. For me.
The exoskeleton, however, is just a hint of what is possible. What lies beyond is far from mere fixing; the possibilities point to enhancement. If Gary and others like him decided to “upgrade” their legs with some future technology inspired by the exoskeleton, would those with “regular” legs be in need of fixing? In a world of enhanced humans, would all people be born damaged or broken?
Oscar Pistorius is a contemporary example of what may one day be possible. Oscar is a double amputee and a world class sprinter. His legs, which were made by the same company the CEO of Ekso Bionics worked for at the time, have been the cause of the IAAF’s ruling making him ineligible for competitions conducted under its guidelines. This decision was eventually reversed, but the reasons for reversal were not that the use of artificial legs is not an issue, but rather that they do not give him any advantage over other competitors.
Of course, there must be some restrictions set on competitions. For instance, using a bicycle or a motorized vehicle to win the 100m dash certainly does not seem to be in the spirit of that particular sporting event and so the use of mechanized legs can surely lead to questions. However, the issue of advantage in sport due to technological advancements does not begin with Oscar Pistorius. Shouldn’t better running shoes fall into this same category? What about better diets and certain dietary supplements? What about the advancement in training efficiency? Are these not technological improvements? I doubt that Coroebus of Elis, who won the stadion race in 776 B.C.E., would be a match for Usain Bolt, who won several races at the 2008 Olympic Games. Does fairness dictate that athletes should have equal access to advantage conferring technologies? So, in the case of the IAAF’s objections to Pistorius, was the underlying issue of fairness related to the fact that his legs were not equally accessible to other athletes? What about Usain Bolt’s physiology? Is it on par with mine? If I trained as he does, ate as he does, slept the same amount of time he does, etc., would I also be able to run 100m in 9.72 seconds? I doubt it! Does Bolt have an unfair advantage over me? Insofar as he is better predisposed than I for such great sprinting performance, I guess he does have an unfair advantage. Do I need fixing? Am I broken? Well, no. I’m not a sprinter, so I don’t need fixing, right?? What about Coroebus of Elis? Was he broken? Well, no. He won the first ever recorded Olympic race!
I am certainly not making claims about the IAAF’s decision, nor about the reversal of the IAAF’s decision by the Court of Arbitration for Sport. I also am not questioning the logic behind the rules and boundaries in sporting events. What I question, however, is whether any competitors can truly be said to be advantage-less? And I think the answer is no! If that is the case, however, then it would seem that the point of contention about Pistorius’ alleged “edge” over his co-competitors might actually stem from a deeper apprehension about what our society considers to be abnormal. Could it be that both Gary (who cannot walk) and Oscar (who can outrun much of his “normal” competition) are somehow viewed in terms of being in need of “fixing” because they are abnormal? If this is the case, then it’s not merely an ableist fear because Oscar Pistorius, to my mind, is more than able to win races against “normal” sprinters. Perhaps people are suspicious of difference? I just hope they never figure out that taller people take bigger steps when they sprint.
Is Mount Everest the Proper Political Podium for Individuals with Disabilities?
Sudarshan Gautam, a 25-year old Nepalese man living in Calgary, lost his arms in an accident 15 years ago. The experience of being both pitied and laughed at by his family and school friends, as well as the general negative attitude of others toward his disability prompted him to prove that losing his arms did not make him disabled. To this end, he learned to drive a non-modified motorbike and a car with manual transmission. He also declared that he would summit Mount Everest in 2012.
Mount Everest, being the highest point on earth, gets its share of “firsts.” Following the famous first successful ascent by Edmund Hillary and Tenzig Norgay, there had been a constant number of both legitimate and eyebrow raising “firsts.” On the one end of the spectrum, there was the first ascent without oxygen (1978) by Reinhold Messner as well as the first winter ascent by Leszek Cichy and Krzysztof Wielicki in 1980. On the other end of the spectrum, there was a dangerous helicopter landing in 2005, an insane ski descent, a sleep-over on the summit, etc. Although the mountain has been commercialised for many years now (with “tourist” climbing companies charging as much as $70,000 per person to lead clients to the roof of the world), the mountain continues to be both a dangerous place and a place of infinite “firsts” with individuals always willing to risk their lives (and the lives of other people on the mountain since rescue efforts at such extreme altitudes are very dangerous endeavours) to be the youngest, the oldest, the fastest, etc. to reach the summit.
Climbing Everest is definitely a personal accomplishment and it has certainly been quite a political endeavour ever since people had set their minds on climbing it. I am not surprised that Sudarshan Gautam is hoping to promote his noble cause (of advertising abilities of individuals with disabilities) by attempting to climb the highest mountain in the world. There have been other individuals with disabilities who have successfully navigated the treacherous ridges of Everest. Erik Weihenmayer was the first blind person to summit Everest and Mark Inglis was the first to do so without legs.
The questions, however, that seem to bother me are Continue reading
Defining Autism
The New York Times recently published an article on the medical debate over the definition of autism — whether it has been defined too loosely, and needs to be narrowed. The article explores some of the potential consequences that the outcome of this debate could have, and looks to the anger and fear that has been generated amongst many parents with children currently defined as autistic. Amy Harmon writes,
A study reported on Thursday found that proposed revisions to theAmerican Psychiatric Association’s definition would exclude about three-quarters of those now diagnosed with milder forms of autism called Asperger syndrome or “pervasive developmental disorder, not otherwise specified,” also known as P.D.D.-N.O.S. These are people who have difficulties with social interaction but do not share the most severe impairments of children with classic autism.
Some parents fear that children deemed “on the edge” of autism will have their treatment options limited with the proposed narrowing of the definition. In contrast, some parents with severely autistic children support narrowing the definition.
“Everyone on the spectrum benefits when money and services available are applied more specifically and appropriately to the individual needs of each person affected,” said Mark L. Olson, of Henderson, Nev., whose daughter, 16, does not speak. Mr. Olson has argued on hisblog that those with more severe needs have been overshadowed by people with the Asperger diagnosis, who have typical intelligence and language development.
The article goes on to discuss the implications that labelling a child with ‘autism’ has on that child. On the one hand, it often opens up the opportunity for treatment, while on the other, the child is deemed abnormal.
Conference Call for Papers: Human & Machine: Posthumanism in Technology, Culture, and the Arts
This might be of interest to some people:
The Ewha Trans-Humanities Research Team will host an international
conference on “Human & Machine: Posthumanism in Technology, Culture
and the Arts” from June 1st to 2nd, 2012 and invites suitable
contributions for presentation at the conference..Genetic engineering and digital technology are more than just
supplement of human intellectual and physical ability; they seem to
bring fundamental changes to the nature of what it means to be human.
Such changes have been seen in how philosophy, literature, art,
technology and cultural discourse view the issue of individual and
group identities, the nature of human characteristics, the meaning of
life, the status of humans in nature and other relevant issues taken
from ethical and political perspectives. In this conference, the
subject of humans and technology, both of which are represented in the
debate on posthumanism, will be deeply discussed from a
multidisciplinary perspective focusing on the topics of: Human Body
Transformation in Science, Technology, and Art; Ethical Issues on
Human Enhancement; Representations of Posthumans in Popular Culture;
and Posthumanistic Impact on Human Ontology.The conference poses the question as to whether or not technology has
influenced the perspective of being human and the nature of humanity
itself. The conference examine the aspects of the human body that have
been transformed through technology and their significance: How have
physical transformations through prostheses, implants, genetic
engineering, and organ transplants influenced human identity? How are
the ethical issues, that such transformations generate, demonstrated
in the arts? Given the phenomenon that human beings can reconstruct
themselves with machines as well as utilize machines, what is the
meaning of post-human embedded within the interaction between
human-like robots and human beings, or the combination of technology
and human-beings? These questions are to be discussed in the
conference.Human enhancement and transformation technology, which cutting edge
technology will make possible, demand our serious consideration since
the diverse aspects of being human in the future rely on a variety of
ethical and political issues including the rationality and validity of
the application of such technologies. The conference endeavors to find
answers to the fundamental questions of how to define what is the norm
in the nature of being human, and what natural rights for human beings
are, followed by which values are to be respected in the era of
cutting edge technology.Furthermore, the conference examines aspects of representations of
posthumans like human clones, androids, cyborgs and aliens which
depict new forms of human beings, through the image of the future
presented in popular culture such as SF movies, animations, SF novels,
music videos and TV commercials. And also, there will be a discussion
of public awareness on the notions of naturalness, otherness, class,
utopia and dystopia related with such popular culture.
As human beings attain the ability and skill to reconstruct their
bodies through substitution, the boundaries between the human body and
its image, the lines between what is artificial and what is natural,
and the distinctions between nature and culture disappear. This
phenomenon raises various ontological issues regarding the
relationships of the real body and the virtual body, life and
lifelessness, and the subject and its surroundings or ‘others’.
Posthumanism pursues, on one hand, a liberal and post-ideological
relativism, but on the other hand, it tends to combine with the
critical theories, materialism and feminism. How can individual
transhumans and posthumans be positioned in social systems and
relations? Indeed, do human beings have the freedom to choose a body
for themselves? If so, how and where can we apply our enhanced
abilities? To what extent can it be considered an individual matter or
a social and political matter? Through posing the issues and problems
on modern anthropocentricism, this conference reconsiders the human
ontology that is constantly changing and being reconstructed rather
than the one that is defined by identity in the nature of
transcendental property.A tentative schedule of the conference is as follows:
June 1st
Session 1: Human Body Transformation in Science, Technology, and Art
Session 2: Ethical Issues on Human Enhancement
Roundtable Discussions: all speakers and discussants will participate inJune 2nd
Session 3: Representations of Posthumans in Popular Culture
Session 4: Posthumanistic Impact on Human Ontology
Roundtable Discussions: all speakers and discussants will participate inConfirmed Speakers include Julian Savulescu (Oxford University), Dónal
O’Mathúna (Dublin City University), Michael Hauskeller (University of
Exeter), Thomas Philbeck (NYIT), Stefan Sorgner (Universität
Erlangen-Nürnberg), and Jens Eder (Johannes Gutenberg University,
Mainz).If you like to present a paper at the conference, please submit an
abstract of not more than 400 words by 29 February 2012 to Dr.
Eunryung Kim, e-mail: elysak@ewha.ac.kr.
FIXED: a Kickstarter plea
Some of Aimee Mullins' legs
Oakland-based filmmaker Regan Brashear is launching her film FIXED: The Science / Fiction of Human Enhancement and is running a Kickstarter campaign to help with funding for the film’s clean-up. You can start with donations of $1 and up–details about the campaign and film here. The campaign runs until 9.03am EDT, August 31, so donate NOW. A brief excerpt from the site:
What’s the film about? What does “disabled” mean when a man with no legs can run faster than many Olympic sprinters? With prenatal screening able to predict hundreds of probable conditions, who should determine what kind of people get to be born? If you could augment your body’s abilities in any way imaginable, what would you do and why? From pre-implantation genetic diagnosis to neural implants and bionic limbs, researchers around the world are hard at work developing a myriad of technologies to fix or enhance the human body, but what does it mean to design “better humans” and do we want to? FIXED follows three remarkable people: Continue reading
LEAF and DAWN Intervene in Case Before the Supreme Court of Canada
Below is a press release put out yesterday by the Women’s Legal Education and Action Fund (LEAF) and the Disabled Women’s Network Canada (DAWN). The two organizations will intervene on a case before the Supreme Court that could potentially have serious impacts on the rights of women generally and those of disabled women specifically.
There are several important issues that are going to have to be considered in the case, particularly the systemic barriers to employment face by disabled people and disabled women in particular and the inherently problematic, and all too frequent, attempts to judge the abilities or lack of abilities of a person based on brief, and not necessarily representative, observations of that person.
I hope the Supreme Court will do the right thing and overturn the lower courts decision. Read the full press release below.
