Less than half of Canadian adults with disabilities have jobs: StatsCan

Less than half of working-age Canadians with physical and mental disabilities have a job, a significantly lower percentage than the general population, according to Statistics Canada.

A data agency report released Wednesday coincides with International Day of Persons with Disabilities, a UN sanctioned day to raise awareness. The report covers data from 2011 and indicates 49 per cent of Canadians between ages 25 and 64 who said they have a disability could find employment. That compares with a 79 per cent employment rate among the general working-age population.

“Canadians with disabilities include those with a physical or mental disability related to seeing, hearing, mobility, flexibility, dexterity, pain, learning, development, psychological/mental disorders or memory,” the agency says.

About two million people across Canada self-identify in that category — about 11 per cent of Canada’s entire population for that age group. Out of those more than two million people, only about a million of them have some sort of job.

Within the group of individuals who consider themselves to have some sort of disability, the agency divides disabilities into four categories, with these job rates:

Mild disability — 68 per cent employment rate.
Moderate disability — 54 per cent.
Severe disability — 42 per cent.
Very severe — 26 per cent.
Generally speaking, the more severe the disability, the less likely an individual will get work.

Diane Bergeron is the national director for government relations and advocacy with the CNIB. She says the main problem that people with vision issues face in terms of employability isn’t a lack of skills — it’s a perception and an assumption that they can’t do the job, or that the workplace will have to accommodate them in some onerous way.

“People think ‘if I was to close my eyes, I couldn’t do any of the work I do, like use the computer or read files’ [so they assume a blind person can’t either],” she said in an interview. “But what they don’t think about is there are talking computers — technology has opened up the world to have us participate.”

According to the Statistics Canada report, having a university degree seems to increase the odds of finding employment, for both Canadians with disabilities and without.

Education pays off

Employment rates for university graduates with mild, moderate and severe disabilities weren’t that far off from the rate for those without any disability — the rates for all the categories ranged between 77 and 83 per cent.

But the employment rate of university graduates with a very severe disability was lower, at 59 per cent.

A bias against disabled people with the appropriate level of education is a big problem, Bergeron says, because people with vision issues often face disproportionate difficulties in getting a job, even after they’ve gone out and obtained the necessary level of education.

“Employers always tell me that their ideal employee has skills like strategic thinking, problem solving, drive and passion,” she says. Those are the types of skills that blind people have in abundance, as they need to use them to do countless daily tasked that sighted people — the “retinally dependent,” she quips — aren’t even aware of, such as getting into work in the first place.

“All the skills you want in an employee are abundant in an employee who you have decided isn’t ideal,” Bergeron says.

Statistics Canada’s numbers show education is clearly a factor in employability across all groups, and the numbers suggest that’s especially true for Canadians with disabilities.

Among those with a severe or very severe disability and less than a high school diploma, the employment rate was only 20 per cent. That compares to a 65 per cent employment rate for the population at large of Canadians who didn’t finish high school.

Perhaps most troublingly, people with disabilities often earn far less than other Canadians without a disability — even when doing similar work.

Men with disabilities and who have university degrees and full-year, full-time work earned an average of $69,200 in 2011, compared to $92,700 for men with no disability.

The numbers showed the same trend for women, although the gap was smaller.

Among women university graduates working full time, employment income for those with disabilities averaged $64,500, compared with $68,000 for those without a disability.

It’s a story that Bergeron hears often — the right person for the job is passed over because society has decided they might be “disruptive” to the workplace and not worth the cost of accommodating.

“That’s the perception,” Bergeron says, “that they wouldn’t have the skills.”

http://www.cbc.ca/news/business/less-than-half-of-canadian-adults-with-disabilities-have-jobs-statscan-1.2858954

Former residents settle Huronia lawsuit

The Huronia Regional Centre – this case has settled; there will not be a trail. To read the settlement agreement go to: http://www.kmlaw.ca/site_documents/080659_SettlementAgreement_17sep13.pdf

Members of the lawsuit looking for information can call 1-866-777-6311, or email huroniaclassaction@kmlaw.ca

~The History~

The Huronia Regional Centre located in Orilla, Ontario, was operated by the Ontario government from 1876 to March 31, 2009. It was the first institution of its kind in Ontario and was designed to house individuals who were deemed to have cognitive and other disabilities. Individuals could be admitted by parents and guardians, from training schools, or through the Children’s Aid Society.
At its peak, Huronia’s population exceeded 2,500 people. By the mid 1970s, the Ontario government operated 16 such facilities across the province.
When Huronia opened, there were no community services and supports available for individuals with developmental disabilities. Huronia was one of the last three facilities of its kind in Ontario, along with the Southwestern Regional Centre in Chatham-Kent and the Rideau Regional Centre I Smiths Falls, all of which closed in 2009.
~The Class Action~
Two former residents of the facility, assisted by their litigation guardians, are proceeding with a class action against the Ontario government to seek justice and compensation for severe abuse they and other class members suffered while residing in Huronia.
On July 30, 2010 the Ontario Superior Court of Justice certified this lawsuit as a class action for residents living at Huronia between 1945 and 2009 and other family members. The claim alleges that the Ontario government was negligent and breached its fiduciary duties to the residents and their families in the operation, control, and management of Huronia.

It is alleged that residents of Huronia suffered inhumane treatment and abuse at the hands of some of the staff. The allegations include severe mental and physical punishments for “acting out”, rooms were unnecessarily locked creating a prison-like environment, unnecessarily medicating the residents, residents were often not bathed, and forced to work without pay.

The class action will seek to provide evidence that officials knew about the abuse taking place but did not take the required action to stop it. Examples of such evidence include:

• A 1971 report by Walter B. Williston, which was sponsored by the Ministry of Health, examined the conditions of Huronia. The report concluded that severe abuse and inadequate facilities were present at Huronia.

• A 1960 article by Pierre Berton entitled, “What’s Wrong at Orillia – Out of Sight, Out of Mind”, which describes what he called “atrocities” at Huronia, including extreme overcrowding and physical and emotional abuse. This article ultimately led to Parliamentary debate.
• A 1973 report by Robert Welch, Secretary for Social Development, calling for the creation of appropriate residential homes in the community to facilitate deinstitutionalization.

• In 1976, a report authored for the Minister of Community and Social Services known as the “Willard Report” found serious allegations about the administration at Huronia. The report made several recommendations.

• Affidavits by both plaintiffs, corroborated by their litigation guardians, chronicling the abuse each experienced while residing at Huronia.

• Affidavits from former staff and family members of residents.

Since 1876 thousands of people in Ontario have resided in facilities like Huronia.  There have been many accounts of abuse taking place at these facilities, however little has been done to help the victims.

The victims of these abuses are entitled to adequate compensation and an acknowledgement from the Ontario government that it failed to live up to its obligations to care for these vulnerable individuals.

The Representative Plaintiffs

Patricia was admitted to Huronia at the age of six in 1964. At the time of her admission , Patricia was labelled as “developmentally challenged”. Everything in her life was dictated by Huronia staff.  Patricia recalls being repeatedly abused and punished – hit by a fly swatter or radiator brush, and held upside down in ice cold water. She was also administered medication to pacify her when she was found to be “speaking out”. Patricia was unable to report the abuse she experienced or saw at Huronia for fear of repercussion and threat of increased abuse. Patricia is now 52 years of age and living independently with assistance from the Ontario Disability Support Program.

Marie was admitted to Huronia at the age of seven in 1961. At the time of her admission, like Patricia, Marie was labelled as “developmentally challenged”. While at Huronia, her life was regimented and controlled and she was placed on medication to pacify her for “acting out”. At 16 she was placed into an “approved home” off the grounds of Huronia (but still operated by Huronia) where she was threatened, teased and physically and sexually abused. She did not report this, because she feared being returned to the centre. Marie lives in her own apartment   and supports herself.

Both women understand that their greatest obstacle has not been their disabilities, but the harm they experienced through institutionalization. They want this legal action to help others and ensure similar systemic abuse can never happen again.

The Litigation Guardians

To assist Patricia and Marie with this complex litigation, Marilyn Dolmage, a former social worker at Huronia, and her husband, Jim Dolmage, have agreed to act as Marie and Patricia’s litigation guardians respectively. The Dolmages have been friends with Marie and Patricia for many years. Both Marilyn and Jim have worked alongside people with disabilities in the past and are well informed in this area.

Huronia Trial Management Timetable:

(see the original source for links to many of these original documents)

September 17, 2013: This case has settled; there will not be a trial.

Important Dates ( these dates have links to original documents in the online source, see link at the end)

September 17, 2013 – This case has settled; there will not be a trial.

June 7, 2013 – An article written by Carol Goar entitled “Ugly secret of Ontario psychiatric hospitals won’t stay hidden,” has been published in the Toronto Star.

June 3, 2013 – The World this Weekend (CBC), June 2nd, Sunday edition,  featured a piece on the Huronia Class Action.

May 30, 2013 –  The survivors of the Huronia Regional Centre Patricia Seth and Marie Slark, along with their Litigation Guardians Marilyn and Jim Dolmage and legal counsel held a press conference today at Queen’s Park.

May 27, 2013 – The parties have exchanged responding expert reports in preparation for trial.

April 2, 2013 – The parties have exchanged expert reports in preparation for trial and in accordance with the trial timetable.

February 8, 2013 – Master Glustein presided over the Plaintiff’s motion to compel the Defendant to answer refusals made on the examination for discovery of Mr. Brian Low. Master Glustein ordered the Defendant to answer a number of questions that it had previously refused.

December 18, 2012 – A motion in this action will be heard by the Court on February 8, 2013. The motion relates to refusals made on examinations for discovery and documentary productions issues. The Plaintiff is seeking an Order from the Court that the Crown answer certain questions and produce further documents.

October 10, 2012 – In the process of answering undertakings and written questions for discovery, the Defendant advised that it had located a significant source of further documents to be produced.  The production of documents in this action was to have been completed February 29, 2012.  The Defendant has already produced over 50,000 documents to date.  In a case conference with the Honourable Justice Archibald, the Defendant sought and were granted an extension of time for certain aspects of the previous timetable (from March 7, 2012).  The trial of this action is still scheduled for September 2013.

October 1, 2012 – This action continues to proceed towards trial scheduled for the Fall of 2013.  The Plaintiffs have delivered a Request to Admit to the Defendant asking them to admit certain facts in advance of trial.  The Defendant’s responses are due November 1, 2012.

April 25, 2012 – The Plaintiffs completed three days of examinations for discovery of the Defendant between April 23-25, 2012.  The action continues towards trial which is scheduled for September 2013.  Expert reports, requests to admit, answers to questions taken at examinations for discovery are all expected to be completed in the coming months.

March 8, 2012 – A revised timetable has been set by the Honourable Justice Archibald that provides for this action to proceed to trial September 30, 2013. The next step in this proceeding is for the Plaintiff to complete the examinations for discovery of the Defendant, which are set to be completed by May 15, 2012.

February 24, 2012 – The Plaintiffs completed the first 4 days of examinations for discovery of the Defendant.  A further 5 days of examinations are tentatively scheduled for April 2012.

February 7, 2012 – Oral discoveries (examinations) of a representative of the Defendant will take place February 21-24, 2012.

December 23, 2011 – The Defendant delivered another set of documents as part of its ongoing obligations. The Defendant has now produced over 50,000 documents. Examinations for discovery of the Defendant are scheduled to take place in mid-February 2012.

December 2, 2011 – The Defendant delivered what is believed to be the last set of documents for the Plaintiffs’ review, bringing the total number of documents delivered to approximately 48,000.  Examinations for discovery of the Defendant is scheduled to take place in mid-February 2013.

November 17, 2011 – A trial date has been set for this action for a period of 10 weeks beginning September 30, 2013.

October 14, 2011 – The parties reached an agreement with respect to the redactions in the first two sets of documents produced by the Defendant, which averted the Plaintiffs’ motion which was scheduled for October 5, 2011.  The Defendant has produced un-redacted copies of most of the documents it previously redacted.  The Defendant has also produced its 3rd and 4th sets of documents, which are being reviewed by the Plaintiffs.

August 29, 2011 – As a result of concern regarding the aging class  members, the Plaintiffs filed a motion to fix a trial date at the  earliest practical convenience.  The Plaintiffs believe that the age of  the class members warrants a speedy pursuit to trial.  While no date is  set for the motion it is expected to be heard shortly.

August 8, 2011 – the Defendant produced its second set of documents  (approximately 4,000 documents).  The Plaintiffs have noted similar  redactions in the documents provided as with the documents provided  previously.   The Plaintiff intends on pursuing such redactions in the  motion noted below.

August 5, 2011 – After receiving the first set of documents from the defendant (approximately 2,000 documents) it was apparent to the Plaintiffs that the Defendant redacted (blacked out) information on a number of documents they produced.  Such information redacted included  names of ministerial employees and potential witnesses, information relating to assaults on residents, admissions information, and in other cases extensive portions of a document were redacted such that the Plaintiffs could not know what information was being withheld.   It is the Plaintiffs’ position that the Defendant inappropriately redacted such documents.  The Plaintiffs are concerned that further production from the Defendant will include similar redactions.   Accordingly the Plaintiffs filed a motion today seeking the removal of such redactions from the documents already produced and those the Defendant has yet to produce.  While no date is set for the motion it is expected to be heard shortly.

Additional information on the Huronia Regional Centre class action can be found on the Koskie Minsky  LLP website here.  Legal Counsel Koskie Minsky LLP – See more at: http://www.institutionalsurvivors.com/background/huronia/#sthash.ctTmZn4L.dpuf

– See more at: http://www.institutionalsurvivors.com/background/huronia/#sthash.ctTmZn4L.dpuf

Source: http://www.institutionalsurvivors.com/background/huronia/

The story in The Star, September 17, 2013: http://www.thestar.com/news/gta/2013/09/17/former_residents_settle_huronia_lawsuit_for_35m.html

Judge approves man’s sterilization

It is the first time in England and Wales a court has sanctioned a man’s sterilization. A High Court judge has sanctioned the sterilization of a man “in his best interests” in a landmark legal ruling.
The 36-year-old, from the Midlands, has learning difficulties and already has a son, born in 2010, with his girlfriend.
Justice Eleanor King ruled that a vasectomy could take place after hearing that another child could cause the man :psychological harm.”
Experts said he was capable of sexual consent but did not have the capacity to make decisions about contraception.

The entire story was released today in the BBC News and can be viewed here: http://www.bbc.co.uk/news/uk-23721893

Sterilization Abuse in State Prisons: Time to Break with California’s Long Eugenic Patterns

An article by Professor Alex Stern, Living Archives Team Member, has been released today in The Huffington Post. The article, Sterilization Abuse in State Prisons: Time to Break With California’s Long Eugenic Patterns, reveals that at least 148 female prisoners in 2 California institutions were sterilized between 2006 and 2010. Tubal ligations in violation of prison rules during those five years – and there are perhaps 100 more dating back to the late 1990s, according to state documents and interviews.  Professor Stern’s work points to a discernible racial bias in the state’s sterilization and eugenics programs.

Corey G. Johnson of the Center for Investigative Reporting (CIR) published on July 7th a detailed expose’ of unauthorized sterilizations of unwilling women in California prisons. Johnson’s excellent report brought international attention to a scandal that some activists and researchers have at least partially documented. It is important to note that, as the CIR report says, these sterilizations were illegal: Federal and state laws ban inmate sterilizations if federal funds are used, reflecting concerns that prisoners might feel pressured to comply. California used state funds instead, but since 1994, the procedure has required approval from top medical officials in Sacramento on a case-by-case basis. Yet no tubal ligation requests have come before the health care committee responsible for approving such restricted surgeries….

How could this happen?

Governor Gray Davis apologized in 2003 for California’s twentieth-century sterilizations, 20,000  procedures carried out under an explicitly eugenic law. He did so  quietly, via press release, and with no attempt to discover or  compensate the victims. (Recognized experts on American eugenics were  disappointed at the time: Paul Lombardo called it “premature” and Alexandra Minna Stern said it was “preemptive.”) Now his statement seems like a sham. The  fault is no longer the law, it’s the failure to follow the law.

North Carolina is still struggling to pass a budget that includes compensation for its victims of eugenic sterilization.  California has barely started the process of coming to terms with its  troubled history.

The California state prison system is overcrowded — Governor Jerry Brown is appealing a federal court order to release inmates — and conditions are so bad that 30,000 are on  hunger strike. If this report about sterilization helps to usher in a  period of genuine reform, that would be wonderful.

We would still need to educate all too many people, inside and  outside the jail system, about the moral and practical harm of modern  eugenics. Based on some of the remarks by state officials that Johnson  reported, and on some of the comments on coverage of his investigation,  people slide right back into eugenic ways of thinking.

Justice Now is an organization that works with women in prison. Their website has links to the CIR  reports and videos.

Professor Stern’s article in the Huffington Post raises awareness about eugenic practices and calls for a new era of human rights and the protection of vulnerable populations. Tony Platt co-authored the post. The original article can be found here: http://www.huffingtonpost.com/alex-stern/sterilization-california-prisons_b_3631287.html

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

Non-consenting human subjects: victims of eugenics?

Non-Consenting Adults

Court Rules Blind Father Cannot Take Son to Disneyland

In this Global story from last September, the reporter describes a court decision to refuse to allow Karim Lakhani to bring his son to Disneyland.

With a love of travelling, Lakhani’s dream has been to take his son to Disneyland. In June, a family court judge agreed Lakhani could take his son on the trip. But there was a condition – one that Lakhani was unaware of.

At the time, two adult family friends, who live in California, were going to meet with Lakhani and his son at Disneyland. However, these friends have since changed their plans, prompting Lakhani’s ex-wife to go back to court. She says Lakhani cannot properly protect their son at the amusement park without his sight.

This is the first time his blindness has been an issue when caring for their son.

The judge ruled that Lakhani can only take his son to Disneyland if someone of sight accompanied him.

Physician-assisted-suicides in WA, OR, and MT

Five people have died under the new Washington physician-assisted suicide law, says an article on the American Medical News site . Two cases were referred to mental health professionals, who filed complaints. Fourteen people have requested doctors’ aid in dying so far. The article also includes the statistics of assisted suicide deaths in Oregon (60 deaths, the most in 2008) and explains the current situation of the Montana assisted suicide debate.

 

Links to articles on the fist case in WA

http://www.seattlepi.com/local/406483_death22.html

http://pugetsoundblogs.com/kitsap-caucus/2009/05/27/two-sides-of-the-first-assisted-suicide/

 

An article on the second case in WA

http://seattletimes.nwsource.com/html/localnews/2009296724_websuicide03.html

Brain-Twitter

from CNN, h/t Justice for All

Adam Wilson posted two messages on Twitter on April 15. The first one, “GO BADGERS,” might have been sent by any University of Wisconsin-Madison student cheering for the school team. His second post, 20 minutes later, was a little more unusual: “SPELLING WITH MY BRAIN.”

Wilson, a doctoral student in biomedical engineering, was confirming an announcement he had made two weeks earlier — his lab had developed a way to post messages on Twitter using electrical impulses generated by thought. That’s right, no keyboards, just a red cap fitted with electrodes that monitor brain activity, hooked up to a computer flashing letters on a screen. Wilson sent the messages by concentrating on the letters he wanted to “type,” then focusing on the word “twit” at the bottom of the screen to post the message.

The development could be a lifeline for people with “locked-in syndrome” — whose brains function normally but who cannot speak or move because of injury or disease.Read the rest here.

Thoughts about “Twice Lost”

This morning CBC’s morning radio show The Current aired a documentary called “Twice Lost”. There are a lot of questions that it raises–about relationships, diseases, families, suicide, and reconciliation. You can listen to the whole documentary by clicking here and then selecting Part 2.  It runs about 20 minutes, and is worth listening to in full. But here are the basics and some questions, if you don’t want to (or can’t) listen to the podcast. Warning: spoiler below. One question, up front: what difference should it make to family understanding of a shared past (or a shared future) to discover that a close relative has a previously undisclosed disease, disability, or condition?

The Modern Pursuit of Human Perfection: The Full Story

Below are all 13 posts from our Modern Pursuit series of posts, deriving from the public dialogue that we cosponsored with the AACL and the CACL at the University of Alberta in October 2008. The public dialogue began with some opening comments from our cosponsors, continued with short presentations from our community member panelists talking of their personal experiences, and was rounded out by a series of interchanges between audience and panel. All videos now contain transcripts (thanks to Jackie Ostrem for completing the work needed here: update 21 June, 2009: all now are closed captioned, thanks again Jackie!), and the videos are also available on YouTube. Comments on the blog on any of these posts is still welcome, but we also hope that you’ll find these of interest and use down the track for individual reflection or group discussion.

Thanks to all participants: Anna Macquarrie, Bruce Uditsky, Dick Sobsey, Wendy Macdonald, Sam Sansalone, Colleen Campbell, Anne Hughson, and Simo Vehmas. And thanks to Grant Wang and Lee Ramsdell at the Arts Resource Centre at the University of Alberta for the filming and post-production work, and John Simpson for organizational assistance.

Introduction

My doctor, my child

Living with trisomy 13, part I

Living with trisomy 13, part II

When disability meets social welfare

Bioethical reflections on disability, medicine, and family life

Decisions and dishonesty in medicine

Connecting with others

Vulnerability, trust, and confrontation

Good people in medicine and the disconnect

The denial of parenthood and selective abortion

Going underground and true choice

Disability, individual autonomy, and systematic devaluation

Living with Trisomy 13, Part 2: The Monitor

[This is the fourth post in a series highlighting a public dialogue held at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. It is also the second part of a description of events given by Sam Sansalone. The first part can be found here. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. This series will bring forward the videos made of this event twice a week, roughly every Wednesday and Saturday. For further context, please see the introductory post in the series, which can be found here; we’ll string together all posts in this series when we have most / all of them up.]

In this video (followed by a transcript) Sam Sansalone continues to describe his experiences trying to keep his daughter, Katya, alive. This part of the story is focused around a monitor necessary to keep Katya alive. The hospital staff clearly recognize that this piece of equipment is needed but seem somewhat reluctant to allow Katya to use the monitor, possibly even arranging a situation where a less medically savvy couple than Sam and his wife would choose to give up the monitor without realizing the consequences (ie. their child quietly choking to death while they slept). Fortunately, the missing monitor is caught and Katya is able to continue living.

As far as we know Katya is the oldest surviving child in Canada to have received a Trisomy 13 diagnosis and Sam closes by sharing his thoughts about why this may be the case.

Watch the video and answer the accompanying poll:

One in 1,000 children may become subjected to growth attenuation

On January 23, I attended a symposium at University of Washington on the controversial “growth attenuation” treatment for children with “profound” developmental disabilities. The event was an update to the larger 2007 symposium which followed the controversy surrounding the case of Ashley, a six year old girl with severe physical and developmental disabilities, who went through a combination of hormonal treatment to stop (or attenuate) further growth, hysterectomy (which the hospital performed without a legally required judicial review), and double mastectomy (which physicians called “breast bud removal” because she was pre-pubertal).

Since the last symposium, the University and its Seattle Children’s Hospital gathered a Working Group made up of doctors, medical ethicists, legal scholars, disability theorists, and at least one parent of a child with developmental disability to explore whether or not growth attenuation should be offered in the future, and if so under what circumstances. While members of Working Group started out with divergent views on growth attenuation therapy, they were able to come to some moral compromises, according to University of Washington pediatrician and ethicist Benjamin Wilfond. Among other things, most Working Group members agreed that, regardless of how they may felt individually about growth attenuation, it was morally and ethically acceptable if parents of “profoundly” disabled children request it.

How “profound” does the child’s disability have to be? According to Wilfond and others,

My doctor, my child: The response of the medical community to a mother who chooses to have a child who might be born with a disability

[This is the second post in a series highlighting a public dialogue heald at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. This series will bring forward the videos made of this event twice a week, roughly every Wednesday and Saturday. For further context, please see the introductory post in the series, which can be found here.]

The story you are about to hear you may find surprising in a number of ways; I know that I certainly did when I heard it on the night it was recorded. The contrast between the adversity faced by Wendy MacDonald and her family from the medical community upon making the decision to keep her baby early in the pregnancy and the support they received once it was finally time for Kyle to be delivered struck me as a very unfortunate demonstration of the power of linguistic framing. The shift in language from “miscarriage” to “premature birth” is a small one (the addition of one word, one syllable, and three letters), but it made all the difference for this family and the ability of the medical personnel involved to support them. I also found the adamant stance of her family doctor a bit perplexing, the sort of chilling paternalism that so often arises out of a misplaced belief that we alone have access to the knowledge of what is best for others. Perhaps even more than this I was surprised that this story had, and continues to have, a happy ending. For every Wendy MacDonald I am sure that there are many, many women who would be mothers and men who would be fathers that are bullied into conforming with the system because the system “knows best.”

Perhaps this video will make you a little angry, but it should also give you a little hope. Enjoy. Transcript of the clip beneath the fold.

The Modern Pursuit of Human Perfection

On October 23rd last year, the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living, sponsored a public dialogue at the University of Alberta called

The Modern Pursuit of Human Perfection
Defining Who is Worthy of Life

The event began with a panel of people who talked about their experiences with children, doctors, families, and disability. There were then several short commentaries, followed by some open discussion. The event was free and open to the public, and we have videocasts of all parts of the event to share.

Over the next month or so, we will put the videos of the public dialogue up on the What Sorts blog; each runs for 5-10 minutes or so. Today

Rethinking “Conceptions of the Good” in Light of Intellectual Disability: What’s dependence got to do with it?

[This post is the ninth in our new series of Thinking in Action posts, the series being devoted initially at least to discussion of talks at the Cognitive Disability conference in NYC in September. The first post in the series is here and the posts run Tuesdays and Fridays.]

In their talks at the disability conference, Anita Silvers and Leslie Francis look at questions about the role of the individual in the process of coming up with the things the person perceives as what is good for them, which includes reasons and motivations for accepting these goods as the person’s own. This is what is typically referred to as “a conception of the good” in the academic literature on social justice. Silvers and Francis argue that the accounts offered by Rawls and Nussbaum characterize this process in a way that is problematic for those with significant cognitive disabilities because they play up importance of the independence of the individual in coming up with their own good. If we adopt a picture of the individual as independent in this way, then it looks like those with cognitive disabilities will be excluded and left without any way to guard against being exploited by others in society. Is there a way to include individuals with severe cognitive disabilities in the process of conceiving their own good and in exercising their conception of the good to the degree required for social cooperation?

The answer, according to, Silvers and Francis in their talks, is ‘yes’. However, an account that includes those with significant cognitive abilities requires a shift in focus from independence to collaboration. The way in which Silvers and Francis suggest we make this shift is what I want to focus on. Part of their task involves expanding the picture by reframing the notion of conceiving of the good as a collaborative process, which involves “a reasonable dependence” on others in coming to one’s conception of the good. One way to illustrate the direction of the revision, which includes moving away from independence and toward reasonable dependence, is the use of trusteeship as a prosthetic process for those with cognitive disabilities. This way of thinking about collaboration and prosthetic processes in this way assists cognitively disabled individuals in coming up with their own good as well as with their interaction with others in coming up with a conception of the good for society (and thereby justifying justice). Before I get to questions about how we are meant to understand prosthetic processes, I’ll talk a bit about the role of independence and why Silvers and Francis find it problematic.

This is contrasted with Rawls’ and Nussbaum’s accounts of political liberalism, each of which relies on its own picture of persons as independent in the process of coming to their conception of the good. The emphasis on the role of independence within the individual’s process of arriving at and revising their conception of the good on their own has been the basis for the claim that his account of justifying justice excluded people with significant cognitive disabilities. And it is the independence of the individual in this way that invokes a “metaphysics of independence.”

What exactly does a metaphysics of independence refer to?

Universal Design, Technology, and Blind Users

T. V. Raman of Google, who is a pioneer in customizing technology for blind users, is sittting at a computer desk wearing wireless headphones and typing on a keyboard. His guide dog lies attentively on the carpetted floor behind him. Raman’s PC reads text aloud at triple normal speed. Photo by Peter DaSilva for the New York Times.

By MIGUEL HELFT

Published: January 3, 2009

MOUNTAIN VIEW, Calif.

T. V. RAMAN was a bookish child who developed a love of math and puzzles at an early age. That passion didn’t change after glaucoma took his eyesight at the age of 14. What changed is the role that technology — and his own innovations — played in helping him pursue his interests.

A native of India, Mr. Raman went from relying on volunteers to read him textbooks at a top technical university there to leading a largely autonomous life in Silicon Valley, where he is a highly respected computer scientist and an engineer at Google.

Along the way, Mr. Raman built a series of tools to help him take advantage of objects or technologies that were not designed with blind users in mind. They ranged from a Rubik’s Cube covered in Braille to a software program that can take complex mathematical formulas and read them aloud, which became the subject of his Ph.D. dissertation at Cornell. He also built a version of Google’s search service tailored for blind users.

Read the full article here: http://www.nytimes.com/2009/01/04/business/04blind.html?th&emc=th

What are the deep facts about our moral status?

[This post is the third in our new series of Thinking in Action posts, the series being devoted initially at least to discussion of talks at the Cognitive Disability conference in NYC in September.]

What are the deep facts about our moral status? Have your say in a poll at the end of this post!!

Jeff McMahan and Peter Singer have posed the following question, both in their talks for the Cognitive Disability conference, and in their past work: In virtue of what does human life have moral value and significance? They have been especially interested in answers to this question, which are easy to elicit from common sense, that appeal to the properties that human lives embody (e.g., human beings have certain cognitive capacities). They are also both interested in challenging those who would give such answers to think harder about the ways in which we disvalue non-human animal life. More specifically, both Singer and McMahan are skeptical of the coherence of views, including property-based views, that value all forms of human life more highly than all forms of animal life. This is chiefly because not all non-human animal life lacks value-conferring properties, and because not all human life comes with those properties.

There were several especially interesting questions that arose in the question period following McMahan’s talk, one from Naomi Scheman, the other from Adrienne Asch; I’ll comment on just the Scheman one here, and on the Asch question, and the following interchange with McMahan, separately. Here’s the Scheman question (a full transcript of what she says is available beneath the fold):

The clip can be found in podcast #36, the question and answer to Jeff McMahan’s talk (and final podcast on the page), from around 35.45 – 39.00 at the conference website. You can also view it directly at Youtube if you are having trouble playing the video clip above by clicking right here.

Scheman is saying many things here (including things about thought experiments and analogies that I found confusing), but I want to focus on just two of them.

Talking about cognitive disability and moral philosophy

As readers of this blog will know, in September there was a relatively large, special topic conference called “Cognitive Disability: A Challenge to Moral Philosophy”, organized by Eva Kittay and Licia Carlson (and I think Sophia Wong), held in New York City.  In some recent comments here, Shelley Tremain has said the following about the roster of speakers for this conference, particularly the inclusion of Peter Singer and Jeff McMahan:

I would like to know when disability theorists, activists, and our allies came to regard it as beneficial, indeed, laudable, to have Peter Singer and Jeff McMahan speak about disabled people, especially cognitively disabled people. … Giving this kind of attention to nondisabled white, male bioethicists whose awful, dominant views about disabled people are in the public domain (and quite familiar to many of us) serves to further marginalize the work of authors in Disability Studies who are attempting to unravel the misunderstandings and prejudices the views of the former entail for concrete human beings; it marginalizes disabled theorists; it marginalizes feminist disability theorists.

Disability Rights Organizations Express Outrage Over Attacks at McCain-Palin Rally

Note from ST: Here, at last, a national disabled people’s coalition in the US has publicly decried the repeated invocation of the expression “special needs” in the discourse about disabled people that has surrounded the upcoming election.  Disability activists and members of the disability studies movement internationally have long eschewed this expression, arguing that it individualizes and depoliticizes disabled people’s entitlement to social resources and medicalizes their disenfranchisement.  What follows is a recent press release from the US National Coalition for Disability Rights:

ADA Watch.org
National Coalition for Disability Rights
1701 Pennsylvania Avenue, NW, Suite 300
Washington, DC 20006

 NEWS RELEASE:
 October 31, 2008

 Disability Rights Organizations Express Outrage Over Attacks at McCain-Palin Rally

 

(Washington, DC) The National Coalition for Disability Rights (NCDR) pushed back today against the McCain-Palin campaign for ridiculing the legal rights of people with disabilities. News reports describe McCain-Palin campaign representative Senator  Kit Bond (R-MO), joining Vice Presidential candidate Sarah Palin at a rally in Rush Limbaugh’s hometown of Cape  Girardeau, Missouri, mocking Presidential candidate Senator Barack Obama for stating that he’s looking to nominate judges who empathize with “disabled.”

 

“It’s Halloween and it seems that Sarah Palin’s mask of support for people with ‘special needs’ is slipping.  Despite past pandering to people with disabilities, McCain-Palin are actually opposed to vital disability legislation like the Community Choice Act and they want to appoint judges who will further roll back the civil rights protections of the Americans with Disabilities Act,” declared NCDR’s founder and president, Jim Ward.