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

Continue reading

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!

Continue reading

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.

Continue reading

Forced Sterilization of Women and Girls with Disabilities in Australia: The WWDA submission

In November, I posted on the Australian Senate Inquiry into the forced sterilization of women and girls with disabilities.  Women With Disabilities Australia (WWDA) has just made its powerful, eye-opening submission to the Inquiry.  And there’s something you can do, pronto, that may make a difference here: endorse or support the submission.  Anyone who thinks that forced sterilization is a “thing of the past” shoudl read this submission.  First, from the submission (p.20),

There is a historical precedent in several countries including for example the USA (until the 1950s), in Canada and Sweden (until the 1970s), and Japan (until 1996) indicating that torture of women and girls with disabilities by sterilisation occurred on a collective scale – that is, mass forced sterilisation. This policy was rationalised by a pseudo-scientific theory called eugenics – the aim being the eradication of a wide range of social problems by preventing those with ‘physical, mental or social problems’ from reproducing.  Although eugenic policies have now been erased from legal statutes in most countries, vestiges still remain within some areas of the legal and medical establishments and within the attitudes of some sectors of the community:

Contemporary practices of sterilization in Australia

As a follow up to the post in the first link below, here is a list of further related links on those wanting to know more.  Thanks to a helpful anonymous reader of the What Sorts blog who provided most of the links below but who doesn’t wish to be identified.  Folks in Oz: let us know if you have more information, are undertaking action, whatever.

Documentary on Ashley Treatment

22 May 2012 Disability Rights Washington and Video Galaxy  have great new video  on the Ashley Treatment on their website. There is also a poll on this page asking whether you believe more safeguards are needed to protect the civil rights of people with disabilities from civil rights violations and medical discrimination of the Ashley Treatment and related procedures. Continue reading

Maine law changes disparaging language in state statutes, programs

from Bangor Daily News Maine, April 9th, 2012:

Christina Mailhot got teased a lot as a child.

Born with Down syndrome, words like “retard” were flung at her every day, meant to be insulting. So when Mailhot, now 33 and a member of the Augusta-based self-advocacy group Speaking Up For Us, heard state officials using “mentally retarded” in relation to people with disabilities, she cringed.

“It’s legal talk; they’re legal words saying we are stupid,” she said. “I’m not that stupid, you know.”

Soon, such words will be wiped from Maine law and removed from the names of some Department of Health and Human Services programs. They will be replaced with phrases like “intellectual disability” and “person with a disability.”

Read the whole article here

Offensive words and phrases and their recommended replacements:

  • Afflicted (eliminate or use “affected”)
  • Crippled children (children with disabilities)
  • Deranged (persons who have mental health diagnoses)
  • Drunkard (person with alcoholism)
  • Handicapped (eliminate as a noun, as in “the handicapped.” Replace with “disabilities” when paired with a person, as in “child with disabilities”)
  • Lunatic (person declared legally incompetent)
  • Mental deficiency (cognitive disability)
  • Mental retardation (developmental disability)
  • Mentally defective (has a cognitive disability)
  • Senile (eliminate or use “people with dementia” or “people who have dementia”)

A Prequel to Gattaca?

The 1997 film Gattaca, written and directed by Andrew Niccol, portrays a futuristic society where babies are genetically engineered according to parental references.  The film features a society that consists almost exclusively of such artificially built individuals, with those who are born in the archaic, natural manner occupying the fringes of this society.  In order to protect the rights of what are referred to as the “valids” and thereby keep out the inferior “invalids,” each individual’s genetic material is constantly sampled and monitored.  Every person’s DNA is stored in a database, making multiple scans and random genetic sweeps in the workplace very efficient.  The story follows an “invalid” who has a dream of becoming an astronaut, a job open only to the genetically enhanced elite.

But my intention here is not to provide a synopsis of the film, which is very good and is certainly well worth the time it takes to watch.  Rather, I wanted to Continue reading

Erotica For Everybody?

It would seem that erotic images really do sell and that they infiltrate our society from all directions.  Aside from the obvious venues for erotic images and films, pictures of handsome individuals in provocative poses are plastered all over our cities and flashed, it would seem, at every conceivable opportunity both on the internet and on television.  However, images are for those who can see, which means that a substantial population is “spared” this constant barrage of depictions.  Questions of morality aside, pornography sells!  In fact, Lisa J. Murphy’s Tactile Mind is one example of how erotic imagery continues to fill newer and more numerous social niches.  Murphy’s Tactile Mind is “a handmade thermoform book consisting of 17, 3-D tactile photographs on white thermoform plastic pages with the visual image and descriptive Braille accompaniment” (see website).  The book is sold for an extravagant $225, but single pages can also be purchased for $25 a page.  Another example of such “niche-filling” is “Porn for the Blind,” which is

a website which purports to offer sexual stimuli for blind people over the internet.  The website is composed of a white background with a list of links to mp3 sound clips of pornographic content contributed by volunteers.  A ‘translator’ will watch preview clips of videos and give a play-by-play of the events.  Contributors are not allowed to use sexual words when describing existing videos and must give purely clinical descriptions of the events. (see citation)

Although, on the one hand, it might be argued that erotic images are inappropriate even in socially sanctioned contexts, it does seem a bit paternalistic to do those who can only read braille a moral favour by denying them access to erotic material.  From my understanding, the two examples I provided above are quite censored as it is.  The images in Murphy’s book lack faces and are featured only in single poses while the mp3 descriptive recordings do not use sexual words in their descriptions.

There is certainly a debate over the appropriateness of pornography (see Natalie Purcell’s “Feminism and Pornography: Building Sensitive Research and Analytic Approaches”), but at least now it’s everybody’s discussion!

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

Gender Stereotyping and Parenthood Dilemmas

In an effort to avoid gender stereotyping, Beck Laxton and partner Kieran Cooper concealed the gender of their son from the world.  The gender neutrally named Sasha has now turned five and is starting school.  Prior to the commencement of formative school years, Sasha has been given the choice to dress in clothes that appealed to him, be they hand-me-downs from an older sister or an older brother.  When Sasha turned five, his parents were forced to reveal his gender, which means that Sasha will have to get used to being perceived as a boy by his peers.  Although the school requires different uniforms for boys and girls, Sasha’s mom is intervening by letting Sasha wear a girl’s blouse with his pants.

Last year, a different couple made a similar decision not to reveal their child’s gender.  Some psychiatric experts voiced their concerns:

“To have a sense of self and personal identity is a critical part of normal healthy development,” Dr. Eugene Beresin, director of training in child and adolescent psychiatry at Massachusetts General Hospital, told ABC News. “This blocks that and sets the child up for bullying, scapegoating and marginalization.”

The article continues:

But as parents well know, bullying is hard for any child to avoid. It’s more important to raise someone who’s confident enough in himself to overcome peer pressure. It’s also important to have his parents have his back.

The question of personal identity is interesting as gender is certainly a big part of it.  However, that’s precisely the problem couples like Beck Laxton and Kieran Cooper are attempting to avoid.  The question of bullying, scapegoating and marginalization is a bit trickier since such actions are certainly a product of dogmatically ingrained gender stereotyping, but they will not cease to exist just because Sasha’s parents have grown past them.  Although bullying may well be hard for any child to avoid, some children do get bullied more than others.  And although Laxton and Cooper are trying to inculcate a sense of self and others in Sasha, which they hope will be lacking gender stereotyping, are they also not sacrificing their child’s emotional and physical safety by setting him up for potential bullying?  It is quite important to raise someone who’s confident enough in him or herself to overcome peer pressure, but it could also be the case that exposing a child to more risk of bullying may have an adverse effect on his or her confidence.

That’s not to say that Sasha will be bullied, but it will depend on his environment.  If Laxton and Cooper chose an appropriate school, perhaps their goal of raising their son to be confident in himself and have a valuable dual perspective on gender will not be compromised by the very gender stereotypes they are attempting to undermine.  “Egalia,” a preschool in Stockholm, Sweden comes to mind (as an example of the kind of environment in which Sasha could flourish).  Staff do not use words like “him” or “her,” but rather a made-up neutral term and students are encouraged to do the same.  Moreover, traditional “boy” and “girl” toys are spatially integrated so as to obliterate any value systems associated with stereotypical gender preferences.  For those interested, here is the article.

Bullying has not ceased in spite of a laudable movement to curb it.  Although Laxton and Cooper’s hearts may be in the right place, they have influence only over Sasha’s worldview and not that of other children (who get theirs from their own parents or guardians).  Are they putting Sasha at risk, as Dr. Eugene Beresin claims?  And if the answer is yes, are they entitled to make such choices for Sasha if they lead to increased risk of bullying, which could potentially be developmentally as well as physically harmful?

Kidney Transplant Denied

The parents of a young girl with Wolf-Hirschorn syndrome claim that she was denied a kidney transplant solely on the basis of her intellectual disability at the Children’s Hospital of Philadelphia. The mother’s account of her interaction with the social worker and physician is very specific. There seems to be little room to conclude maybe there was some other reason for the denial. Medical Ethicist Art Kaplan’s poll goes right to the heart of this. While Kaplan concludes, “But those reasons, to be ethical, have to be linked to the chance of making the transplant succeed. Otherwise they are not reasons, they are only biases,” the poll on the page asks simply, “Do you think a mental disability is a valid reason to deny a transplant?” If you have an opinion consider responding to the poll. Continue reading

Wallace Kuralt’s era of sterilization

The Charlotte Observer has recently published an article on the story of Wallace Kuralt, a primary figure behind the eugenics movement in North Carolina. The article weaves between Kuralt’s personal story, his struggle to find a job during the depression, his desires and motivations, with the broader history of eugenics in North Carolina and the United States:

Compassionate. Visionary. A champion of women and the poor.

That’s the reputation that Wallace Kuralt built as Mecklenburg County’s welfare director from 1945 to 1972. Today, the building where Charlotte’s poor come for help bears his name – a name made even more prominent when his newscaster son, Charles Kuralt, rose to fame.

But as architect of Mecklenburg’s program of eugenic sterilization – state-ordered surgery to stop the poor and disabled from bearing children – Kuralt helped write one of the most shameful chapters of North Carolina history.

You can read the rest of the article here.

FIXED: a Kickstarter plea

Aimee Mullins' Legs

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

Here We Go Again: Canada Bars Family of Autistic Teen

Recently, we told you about an immigration restriction case involving a family living in Montreal. We then told you about the resolution of that case.

As evidence that the recent case was not an isolated incident, this Ottawa Citizen article describes a similar case.

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.

Continue reading

Update on Immigration Restriction Case

In this article from the Ottawa Citizen, you can read more about the family described in this earlier post on immigration restrictions.

A family from France, who were told they could not remain in Canada because their eight-yearold handicapped daughter would be an “excessive burden” on social services, has won a reprieve after the intervention of Quebec Immigration Minister Kathleen Weil.

The family was facing expulsion in July after Canadian immigration officials rejected Barlagne’s application for permanent residency status, saying his daughter, Rachel, was deemed “medically inadmissible” because she has cerebral palsy. Her “excessive burden” on social services would have been $5,259 a year in special educational costs.

You can find the full story here.

Drake on organ harvesting on death row

Great post just up by Stephen Drake from Not Dead Yet on some recent discussions of the idea of introducing policies that promote the harvesting of organs from death row inmates.  It begins:

Wesley Smith has two related pieces on an op-ed by a death row prisoner that was published in the NY Times on March 6th.  Christian Longo, who admits to being guilty of killing his wife and three children, wrote to the newspaper to promote voluntary organ donation by death row prisoners.

In Wesley’s first blog post on this, which I’ll be quoting later on, he blasts the concept – a sentiment I wholeheartedly share.  In the second post, he describes the unmentioned history that the NY Times has with Longo and discredited former reporter Michael Finkel.

While I was surprised at this particular promoter of this proposal getting published in the NY Times, it really wasn’t that surprising to see the idea of death row prisoners as an untapped source of organ donors being pushed in their pages.

This issue resurfaces from time to time, usually around media coverage of a specific death row inmate making the request – wanting to donate organs after his or her death or a kidney while alive.

But right now we might be seeing a deliberate push to popularize this idea by at least one player with both money and media savvy.  See, I’ve been meaning to write something about this topic since last February.  February 14th, to be exact.

You can read the rest of the post, which includes several videos and a discussion of the longer history of this issue, right here or by going to

http://notdeadyetnewscommentary.blogspot.com/2011/03/organ-donation-by-death-row-inmates-get.html.