Monday, June 30, 2008

De-politicizing an important accessibility story?

The Associated Press wrote a story June 29 about the court ruling that blind and visually impaired Americans deserve accessible money. But instead of focusing on the disability rights efforts and political issues surrounding this significant accessibility issue, The AP story turned it into a profile of American Council of the Blind attorney Jeffrey Lovitky and his deceased love Sandy Welner, who was visually impaired.

The story says: "For the lawsuit filed on behalf of the American Council of the Blind was never just about discrimination or changing the currency so the blind can distinguish a $1 bill from a $20. It was about a brilliant, gifted woman who changed so many perceptions and overcame so many obstacles that those who knew her never doubted her ability to continue inspiring enormous change, even from the grave."

Disability studies scholar Cathy Kudlick, who is visually impaired, alerted me to the article and says it is an example of "the way disability activism is de-politicized in the media."

I agree. The media need to be careful when they write in-depth profiles of one or two people for stories on important disability rights topics because they can be accidentally discounting the hundreds or even thousands of disability rights advocates who work for years to make these changes happen in American society. These types of profile stories also discount the real significance of the accessible money story -- that America is making one more positive step toward equal access by all people to society.

How news happens, maybe?

A recent Washington Post story about disability in Russia may be linked to an email I forwarded in May. I am currently working as a consultant for a journalism department at a university in Russia, which plans to start a regional training center to instruct journalists on how to cover disability issues there.

In May, I forwarded a story from Radio Free Europe to my English-speaking contact person in Russia who works for the project. I didn't know she had worked at The Washington Post. She forwarded it to a former colleague there, and voila, a month later The Post does a story on the same topic.

Coincidence? Maybe. But however the story happened, I think it's a good lesson to all of us to let all our media contacts know about interesting story ideas about disability whenever we can.

Tongue Drive system holds promise for wheelchairs, computers

From Reuters June 30:

A new device that uses a tiny magnet can help disabled people steer a wheelchair or operate a computer using only the tip of the tongue, U.S. researchers reported June 30.

The magnet, the size of a grain of rice, lets people direct the movement of a cursor across a computer screen or a powered wheelchair around a room.

It is easily implanted under the tongue, the team at the Georgia Institute of Technology said.

"We chose the tongue to operate the system because unlike hands and feet, which are controlled by the brain through the spinal cord, the tongue is directly connected to the brain by a cranial nerve that generally escapes damage in severe spinal cord injuries or neuromuscular diseases," said Maysam Ghovanloo, an assistant professor who helped direct the work.

"Tongue movements are also fast, accurate and do not require much thinking, concentration or effort."

A headset with magnetic field sensors detects the magnetic tracer on the tongue and transmits wireless signals to a portable computer, which can be carried on the user's clothing or wheelchair.

"This device could revolutionize the field of assistive technologies by helping individuals with severe disabilities, such as those with high-level spinal cord injuries, return to rich, active, independent and productive lives," Ghovanloo said in a statement.

The team reported on their device to a meeting of the Rehabilitation Engineering and Assistive Technology Society of North America in Washington.

The researchers said the computer could be programmed to recognize a unique set of specific tongue movements for each user.

"An individual could potentially train our system to recognize touching each tooth as a different command," Ghovanloo said.

The researchers tested the Tongue Drive system on 12 able-bodied volunteers and now plan to test it on people with severe disabilities, Ghovanloo said.

NYC hearing explores problems facing veterans

From PR Newswire June 30:

NEW YORK -- A dispiriting litany of the many problems New York-area military veterans are facing -- rising suicide rates, Post Traumatic Stress Disorder (PTSD), homelessness, high unemployment -- was voiced by a group of experts last week, at a New York City Council hearing, "Exploring Employment Options for New York City's Veterans," organized by the nonprofit Veterans Across America (VAA).

Councilman Hiram Monserrate, a Gulf-War veteran (a Marine) who became the first Latino elected to public office in Queens, held the hearing as Chairman of the Council's Veterans' Committee.

Dr. Ray Healey, co-founder of Veterans Across America (VAA), announced that VAA, partnering with the Greater New York Chamber of Commerce, will stage a veterans' employment conference, "Six Months to Success," in April 2009. Dr. Healey said the Conference would focus on the needs of wounded and disabled veterans.

Anne Marie Agnelli, Vice President of Public Affairs for CA Inc. (Islandia, NY), announced at a press conference that her company was supporting "Six Months to Success" with a substantial sponsorship contribution.

Wes Poriotis, co-founder of Veterans Across America, said, "One great solution to all the problems outlined here today, from unemployment to depression to homelessness, is good jobs. Employment heals many ills."

Company develops computer simulation program for autistic adults

From PR Web June 30:

Columbia, Md., -- Adults with autism spectrum disorder (ASD) struggle daily to fit in to a world that does not understand them. Some have the advantage of vocational and transition support programs, but limited availability and cost hinder many of these adults from getting help. As a result, their social impairments lead to difficulty at work and social isolation. Computer software programs have been proven to help children with certain aspects of socialization, but there are currently no existing computer programs designed for adults to practice and strengthen basic conversation and communication skills. SIMmersion LLC seeks to remediate this deficiency by announcing the completion of a prototype simulation designed to train and reinforce positive social skills for adults with ASD.

The simulation was developed under a partnership with the Catholic University of America and funded by the National Institute of Mental Health (NIMH) through a Small Business Innovative Research grant. Program users talk with simulated character Sam Martin, whom they meet at a neighborhood party. They can get to know Sam by asking questions about his job, the school he is attending, and his personal life; in turn, Sam will respond and ask questions to get to know the user. Sam behaves and responds differently during each simulated conversation, allowing for repeated practice that can be generalized to real world peer-to-peer conversations.

The goal of this SIMmersion training simulation is to provide an immersive, realistic environment for adults with ASD to practice and improve their social conversation skills while receiving real-time support and feedback from an on-screen Coach and other embedded help features. As a result of using the simulation, members of this population have the potential for increased opportunities for successful interactions with peers, greater inclusion in work, social, and educational groups, increased job retention, and better overall quality of life.

Helping young men with autism succeed

The Herald in Sharon, Penn., writes about a local program that assists young adult men with autism transition into the workplace. They report that the program is considered "a success — by those running it, those taking part and those funding it."

Another negative use of "weird"

Neil Sauter

I wrote about my problem with columns called "News of the Weird," and the NY Post has a column called "Weird but True." I'm not going to let it off the hook just because it is a sensational tabloid.

The NY Post put this news item in its "Weird but True" column:
A 24-year-old man who suffers from cerebral palsy has completed an 830-mile walk
- on stilts. It took Neil Sauter eight weeks to walk across Michigan's Upper and Lower peninsulas. He raised $16,000 for United Cerebral Palsy of Michigan.
If Sauter wants to walk across Michigan on stilts, more power to him. He's not weird because of it. In fact, he's gotten a lot of people talking about cerebal palsy through the news coverage of his walk and raised some money as well.

Hundreds of ASL advocates protest conference

From the Milwaukee Journal Sentinel:

The deaf, their parents and advocates disagree on whether children are best off learning sign language or using hearing implants and aids to thrive in a hearing world, a split that was on public display today as 1,500 convention-goers and about 600 protesters converged on the Midwest Airlines Center June 28.

Inside, the Alexander Graham Bell Association for the Deaf and Hard of Hearing was holding its 48th biennial convention sponsored by groups including Gallaudet University and the National Institutes of Health.

Outside an 11-month-old organization called the Deaf Bilingual Coalition had gathered protesters from across the country and erected a banner that read: "A.G. Bell Tear Down This Wall."

Coalition members said they had been shut out of the convention, unable to offer parents strong advocacy for the teaching of American Sign Language to deaf babies and their parents.

"Speech is not a language," said David Eberwein, a coalition member from California. "It's just a skill. You can't develop your thinking or full understanding of the world through that alone."

Eberwein said deaf children from families that use sign language read at a higher level than those from families that do not use sign language. He and other coalition members said that a walkway from their hotel to the convention had been closed and that they had not been allowed to put on workshops for parents.

Inside the convention, Bell members offered a very different view, claiming that studies show children who use sign language exclusively have much lower literacy than children who have received hearing aids and speech education.

Unseen disabilities have their own unique challenges

The Dubuque, Iowa, Telegraph Herald did a profile of a local woman who describes what it's like to have a hidden disability like a learning disability. (An estimated 3.5 million Americans have a learning disability.)

As we get closer to the Americans with Disabilities Act (ADA) anniversary on July 26, it's good to see the news media writing about the ADA. And the Dubuque paper's focus of unseen disabilities is particularly welcomed because too many times the media seem to think the only disability is a mobility impairment that leads to wheelchair use. (This is actually a small category of disability, with about 1.6 million people in the USA using a wheelchair.)

So kudos to the Telegraph Herald for chronicling the experiences of someone whose disability isn't readily apparent.

Disability activists protesting in Israel complain of police brutality

The Jerusalem Post reports that disability activists there say they were victims of police brutality when protesting about conditions for disabled people in Israel.

About a dozen wheelchair users protested outside the Welfare Ministry in Jerusalem June 29, saying they would not leave until their demands for more state aid were answered.

"From the year 2000 until today, the government has failed to upgrade the benefits allotted to us as disabled citizens of this country," said Doron Yehuda, a disabled participant in the protest. "We get the same amount of money now that we did six years ago, and prices have gone up. It's not enough."

Yehuda explained that the state aid he received to pay for gasoline just wasn't adequate.

"Some people can take the train or the bus," he said as he motioned at his motorized wheelchair. "But I can't, I have to use my van - it's the only way I can get around. I can't afford the fuel, though, because while prices have gone up, I still receive the same amount of money I did before 2000."

The Jerusalem Post reported that the "most troubling complaints from protesters were that police officers had abused them physically, throwing them out of their wheelchairs and preventing them from using the bathroom. A man with fresh gashes on his head told The Jerusalem Post he was hurt when he fell out of his wheelchair as police tried to force him from the entrance to the Welfare Ministry on Saturday night."

"Police denied the allegations, saying the protesters were there illegally, and gave them no choice but to remove them," according to The Post.

Kayaking their way to strength

The Steamboat Pilot & Today in Colorado profiled a program that helps disabled veterans regain physical and emotional health through whitewater kayaking.

Team River Runner, begun in 2004, uses whitewater boating to assist veterans in recovering both emotionally and physically.

“Just the other day, we’re coming down the Elk River and I look over at a guy that’s lost both legs above the knees,” co-founder Joe Mornini said in the article. “He’s just totally in control. I look at that and think — and there’s dozens and dozens of others — that’s what makes it worth it.”

Louisiana state educators denounce autism amendment

From the Baton Rouge, La., Advocate:

A bid by a Baton Rouge father to help his autistic son pass a key state test could also affect thousands of other exceptional students, state educators said.

Aidan Reynolds, a lawyer and the father of the child at the center of the controversy, says he would get relief for his 12-year-old son, Liam — or head to court.

“And it will not be pretty,” Reynolds warned.

However, any such change would have to win approval from the state Board of Elementary and Secondary Education, whose president sharply criticized the change.

A new policy means the door could be opened for thousands of students statewide with autism, dyslexia and brain injuries who fail the high-stakes test to be promoted anyway, said Scott Norton, assistant superintendent for student and school performance.

In addition, other top state education officials June 27 took the unusual step of denouncing the new policy in a three-page prepared statement.

The dispute combines two highly charged issues.

One involves the Louisiana Educational Assessment Program test, which fourth- and eighth-graders have to pass for promotion.

The other is how much aid autistic and other exceptional students should get when they fail the exam.

National Veterans Wheelchair Games in Omaha in July

Attracting more than 500 athletes each year, the National Veterans Wheelchair Games, which says it is the largest annual wheelchair sports event in the world, will take place July 25-29, 2008 at the Qwest Center Omaha, Northwest High School, University of Nebraska at Omaha, Thunderbowl and Mockingbird Bowling facilities, and the Henry Doorly Zoo.

Sponsored by the U.S. Department of Veterans Affairs (VA) and Paralyzed Veterans of America (PVA), with financial assistance from corporate, civic, and veterans service organizations, the event hopes to improve the quality of life for veterans with disabilities and foster better health through sports competition.

Its Web site reports: "While past Games have produced a number of national and world-class champions, the Games also provide opportunities for newly disabled veterans to gain sports skills and be exposed to other wheelchair athletes. Usually, one quarter of the competitors have never before participated in any type of organized wheelchair sports competition."

The Wheelchair Games has competitions in swimming, table tennis, weightlifting, archery, air guns, basketball, nine-ball, softball, quad rugby, bowling, handcycling, wheelchair slalom, power soccer, a motorized wheelchair rally, track and field. Athletes compete in all events against others with similar athletic ability, competitive experience or age.

LP actor Verne Troyer has sex tape pulled

Verne Troyer

From The Seattle Times:

Actor Verne Troyer, best known for his portrayal of Mini-Me in the 'Austin Powers' films, successfully shut down, for now, the distribution of a sex tape featuring him and a former girlfriend. The celebrity Web site TMZ posted a 25-second snippet of the video June 25, but pulled the clips June 27 after a federal judge granted a temporary restraining order requested by Troyer's attorneys. The ruling also prevents any attempt by a porn distributor from taking orders for the full 50-minute video. Troyer has filed a lawsuit seeking $20 million in damages and the return of all copies of the tape. Troyer claims the sex tape he made with a former girlfriend was stolen from his home a few months ago. The judge's temporary order expires July 7.

Candidate with quadriplegia set for place in Massachusetts state Senate

Thomas P. Kennedy

The Boston Globe profiled Thomas P. Kennedy, a 57-year-old Democrat, who is one of a small number of quadriplegics in elective office in the United States. Kennedy is running unopposed for the state Senate in the Second Plymouth and Bristol District in Massachusetts and should be taking his place there in January.

He's be in politics since he was elected to the Brockton, Mass., City Council in 1977, and in 1982 he won out of a 10-person field to become a state representative, a position he has held ever since.

Disability arts growing in Cambodia

From the International Herald Tribune:

With the slogan, 'See ability, not disability,' the London-based charity Epic Arts has been challenging the common perception of disabled performing artists. 'This is not about sympathy or therapy," said its artistic director and founder, Katie MacCabe. 'We want to show that impairment can actually enhance creativity and that virtuosity is not the just the domain of the able-bodied.'

Epic, an acronym which stands for Each Person Is Counted, established a base in Phnom Penh in 2006, three years after MacCabe first visited the city with her husband. Since the suicide of her mother and the subsequent death from polio of her father, MacCabe, 34, a professional dancer, had been seeking radical solutions to the problem of 'exclusiveness' in dance, and ways of integrating disabled people into arts communities.

Cambodia represented a unique opportunity. The war-scarred country has one the world's highest ratios of disabled people, few of whom enjoy social protections. Established nongovernmental organizations like The Cambodia Trust, working exclusively with landmine victims, have been encouraging the government to draft legislation to improve their standing. Epic's mission has been to change public attitudes by training and showcasing disabled performing artists.

Japan to add wheelchair-accessible taxis

A wheelchair-accessible taxi in Galveston, Texas

From Japan Economic Newswire:

TOKYO -- The transport ministry will develop a taxi that enables wheelchair users to get into the vehicle without getting out of their wheelchair, ministry officials said June 28.

The Ministry of Land, Infrastructure, Transport and Tourism will join hands with automakers in developing a prototype of such a taxi, which they want to be also usable by other passengers, within the current fiscal year.

The move is in response to strong requests from wheelchair users, the officials said, adding the number of such users is increasing in Japan with the aging of society.

The taxi, modeled after ones used in Europe and the United States, would accommodate a wheelchair in a backseat space created by folding the seat. The wheelchair user would get into the taxi on a ramp pulled out from inside the vehicle.

Carmakers participating in the project met earlier this month and began studying the design phase for the envisaged car.

None of about 270,000 taxis currently operating in Japan can accommodate a wheelchair without having the passenger get out of it.

Wheelchair-friendly vehicles currently sold in Japan are mainly minivans equipped with an electric lift. But they are not suitable for use by taxis due to poor fuel efficiency. Such vehicles do not meet a fuel-efficiency industry standard of 500,000 kilometers being traveled over five years.

Yuji Mori, from a federation grouping disabled people's groups, said he hopes that a taxi that is both convenient and safe will become available in Japan.

Wheelchair-accessible taxis are available some places in the USA, Europe and Australia.

Iran, Iraq prepare for Paralympics

Iraqi Rasul Kadhim, a weight lifter with a paralyzed leg, trains for the Paralympics.

As the Paralympics draws closer, I will probably be posting stories from around the world on the international sporting event in Beijing Sept. 6-17 that draws top disabled athletes to the competition.

Although not much into sports myself, I think the Paralympics does give much-needed attention to disabled people in many countries who otherwise would receive little recognition.

For the summer games, athletes compete in the following sports:

As for Iran and Iraq, the Tehran Times reports that its cerebral palsy football (soccer) team will go to Portugal in August for a warm-up camp prior to the Paralympics.

And The New York Times wrote about the Iraq Paralympics team June 29, whose wheelchair fencing coach, Ahmed Abid Hassan, explained: “As a country that participated in many wars since 1980, we have many disabled people. Our Paralympic team is better than our Olympic team.”

North Dakota School for the Blind celebrates 100 years

KFYR-TV in Bismark, N.D., has a story and video about the centennial of the North Dakota School for the Blind, founded in 1908.

It explains how residential schools for blind children, which used to exist in most states, have adapted to modern needs: "The school moved to Grand Forks in the 1960s. Students now rarely spend the night. In fact, many don't even visit the school. Instead they receive services through regional consultants, and the School for the Blind is now offering services to 40 times more people."

"7 Wheelchairs" set for October publication

Seven Wheelchairs: A Life beyond Polio, a memoir by Gary Presley, is set for publication by the University of Iowa Press Oct. 1, 2008.

Here's the description:

In 1959, seventeen-year-old Gary Presley was standing in line, wearing his favorite cowboy boots and waiting for his final inoculation of Salk vaccine. Seven days later, a bad headache caused him to skip basketball practice, tell his dad that he was too ill to feed the calves, and walk from barn to bed with shaky, dizzying steps. He never walked again. By the next day, burning with the fever of polio, he was fastened into the claustrophobic cocoon of the iron lung that would be his home for the next three months. Set among the hardscrabble world of the Missouri Ozarks, sizzling with sarcasm and acerbic wit, his memoir tells the story of his journey from the iron lung to life in a wheelchair. Presley is no wheelchair hero, no inspiring figure preaching patience and gratitude. An army brat turned farm kid, newly arrived in a conservative rural community, he was immobilized before he could take the next step toward adulthood. Prevented, literally, from taking that next step, he became cranky and crabby, anxious and alienated, a rolling responsibility crippled not just by
polio but by anger and depression, 'a crip all over, starting with the brain.' Slowly, however, despite the limitations of navigating in a world before the Americans with Disabilities Act, he builds an independent life. Now, almost fifty years later, having worn out wheelchair after wheelchair, survived post-polio syndrome, and married the woman of his dreams, Gary has redefined himself as Gimp, more ready to act out than to speak up, ironic, perceptive, still cranky and intolerant but more accepting, more able to find joy in his family and his new-found religion. Despite the fact that he detests pity, can spot condescension from miles away, and refuses to play the role of noble victim, he writes in a way that elicits sympathy and understanding and laughter. By giving his readers the unromantic truth about life in a wheelchair, he escapes stereotypes about people with disabilities and moves toward a place where very individual is irreplaceable.

You can read other essays by Gary on his blog.

"Kellie's Book" gains readership

Kellie playing her guitar.

Kellie Greenwald of San Francisco, who has Down syndrome, has written a self-illustrated book about her life with Down syndrome called Kellie’s Book: The Art of the Impossible. The Naples, Fla., Daily News published an article about it recently and she has received many emails of encouragement about the book.

The Daily News also has a photo gallery of some of the drawings of the book.

UK: People with mental illness receive inadequate treatment, misdiagnoses

From The Times in Britain:

People suffering from mental illness are frequently being misdiagnosed or receiving inadequate treatment, according to a group of leading psychiatrists.

The doctors say that patients with serious problems are often referred to psychologists and social workers rather than clinicians and do not receive the medical therapies they need.

'Treatment is often little more than jollying people along,' said Professor Nick Craddock, of the Medical School at Cardiff University, one of 36 signatories of a letter published June 276 in the British Journal of Psychiatry.

'If a GP suspected a patient had cancer, he wouldn't dream of referring him to anybody other than a cancer specialist. A cancer patient might need jollying along, but what he really needs is the correct diagnosis and treatment. That's what he gets from a specialist. But patients with mental illness are not automatically referred to psychiatrists. If they only see a social worker, there's every chance that mental illness, or underlying physical illness, will be missed. Patients are getting a bum deal.'

Describing their letter as a 'wake-up call' to British psychiatry, the psychiatrists say that the desire not to stigmatise people has also done damage by implying that there is no such thing as mental illness. Patients are now known as 'service users' rather than patients — even though, when asked, 67 per cent preferred the word patient and only 9 per cent service user. Treatments are provided at 'mental health' centres, not mental illness clinics.

Sisters take autism awareness to China

From The Quincy, Mass., Patriot Ledger:

RANDOLPH, Mass. — On their first trips to China in 1992, Helen and Karen McCabe met Zhang Ge, an 8-year-old girl with autism.

Helen McCabe, an assistant professor of education at Hobart and William Smith Colleges in New York state, would frequently travel to China to do research, her sister Karen said.

“Over the years, she kept meeting more kids with autism, and she realized they didn’t have any services for kids with autism or any disabilities,” Karen McCabe said.

After years of talking about it, the sisters formed The Five Project 18 months ago. The purpose of the charity is to bring information about autism to families and educators in China as well as to help develop services for people with autism and other disabilities there.

Karen McCabe said that, unlike the United States, there are few special education programs in China’s public schools. There are some private programs, which charge tuition.

“A lot of them are doing the best they can with what they have, which isn’t a lot,” Karen McCabe said.

Since both sisters speak Chinese, “we have an ability to help people that we wouldn’t have in other countries,” said Karen McCabe, who also works for the Randolph Community Partnership.

Based for now at Karen McCabe’s Fitch Terrace home, the charity has translated some materials on autism, a developmental disability that impairs social interaction and communication, and distributed them in China.

They’ve held workshops for parents and caregivers as well as teachers in Beijing and Nanjing, and have also formed a support groups for families of people with autism and another for young adults with mental illness and their families.

Karen McCabe said they hope to raise enough money eventually to take other American experts in special education to China and allow Chinese educators to receive training in the United States.

“It’s one thing for us to explain it,” Karen McCabe said. “It’s another thing for them to come over here and see it.”

The Five Project gets its name from Zhang Ge’s love of the number. Now 24, she works shelving books in the the library of a community center in Nanjing.

Disability organizations push for accessibility in Zambia

From Zambia National Broadcasting Corp.:

The Zambia Agency for Persons with Disabilities has requested the government ensure business houses make their buildings user friendly for disabled persons.

Agency coordinator for Southern Province, Clement Phiri made the request at the Zambia National Association for Women with Disabilities Workshop in the tourist capital - Livingstone. Mr. Phiri noted that most buildings in the country have remained inaccessible to persons with disability.

He said ramps or other facilities, which can aid disabled persons, must be installed to ease their movement.

Mr. Phiri said Disability Organisations have been reluctant to prosecute business houses whose buildings are not disability friendly although the disability act empowers them to do so.

Nerds and Asperger's syndrome

A new book called American Nerd: The Story of My People has a chapter on Asperger's syndrome. I haven't read the book, so I can't comment on the chapter, but have heard a talk by the founder of, who has Asperger's, in which he jokes about the connection between Asperger's and computer science majors.

Here's what a review of the book in The Boston Globe said:

From the late 19th century onward, it was more or less accepted that the ideal purpose of American education and parenting was to produce athletic, popular young men and women, the sort who end up in business, law, or politics. But sometime during the 1980s it began to be a lot harder to dismiss the awkward kids with thick glasses, obsessive interests, and no social skills.

Blending social history, memoir, and reportage, recovering nerd Benjamin Nugent takes on a tour of the world of 'my people,' who they are, and how they came to be. As the 19th-century educational movement alluded became pervasive in the nation's schools (a movement perhaps best summarized by Groton headmaster Endicott Peabody's remark 'I'm not sure I like boys who think too much'), it was all too obvious that there were plenty of young men who would never fit the mold. American Nerd is in large part the story of how these young men (and later women) found subcultures where they did fit in. Nugent deftly recounts the origins of science fiction fan conferences, distills ham radio and Dungeons & Dragons to their essentials.
The passages in which Nugent reduces nerds to their essence (and the obligatory chapter on nerds and Asperger's syndrome) will provoke winces of self-recognition in a lot of readers, which is why this book is at its best when Nugent makes everything personal.

New feature: Stigmatizing quote of the week

Now that I produce this blog I read stories about disability from around the world and I probably don't post these stories more than I do post them. Those stories I don't post usually contain stigmatizing language or narratives of tragedy, pity or "inspiration." If I do post them, it's usually to tell you why they are bad, or despite their flaws, they do have some important information. (Also, I look on this blog as a database for myself, so sometimes stories are posted so they will be in the blog archive if I need to find them later.)

But I do want to post more of problematic stories to talk about why I find them problematic. So I have decided to create an occasionally entry called "Stigmatizing quote of the week." (Acknowledgement: Thanks to for the idea of hightlighting quotes from the news.)

My first entry comes from the Grand Rapids, Mich., Press in a story about local kids competing in the National Braille Challenge. The story is not just about local kids competing, which is a perfectly legitimate story for a local paper, but also about a filmmaker doing a TV documentary about it. Here's the quote from Keith Famie, a former contestant on the "Survivor" who now makes television documentaries:

"The edge of this whole documentary is about the inspirational things we can learn about blinded people. It's a whole other world."
The problems:

  • "blinded people" -- I think it has negative connotations. It sounds "old world" as terminology and is something I don't think blindness organizations would consider an appropriate reference.

  • "inspirational things we can learn" -- It's great that the kids know Braille (few blind people do anymore) but basically they are reading with a tactile method, rather than a visual one. Not really extraordinary. Calling people inspirational when they are engaging in the ordinary activities of living is stigmatizing.

  • "a whole other world" -- blind people are part of society. They just navigate the world with a visual impairment. People with visual impairments adapt to living in a visually oriented world quite well and enjoy all of the same activities that sighted people do. Blindness is one of the most feared disabilities and statements that put blind people in "another world" just add to those fears.

If you have nominations, please send them to me. Thanks!

Sunday, June 29, 2008

NY City has case-by-case approach to service dog policies

Cissy Stamm, center, with Wargas, and Laura Damone
with Maddy, her current service dog.

From the NY Times June 29:

The incident occurred about two years ago. Laura Damone, a 56-year-old resident of Gramercy Park who suffers from post-traumatic stress disorder, anxiety and panic attacks, walked into the Union Square subway station with Buddy, who was her service dog at the time.

The dog, who wore a vest, attracted the attention of two transit workers, who, Ms. Damone says, humiliated her by backing her into a corner, demanding proof of her disability and giving her a ticket.

The confrontation exemplifies problems that can arise from what Assemblywoman Deborah Glick thinks is a vague city law.

Unlike state and federal law, which explicitly prohibits asking about or demanding proof of a disability, city law declares only that establishments provide “reasonable accommodation” to people with service animals. According to Bethany Jankunis, Ms. Glick’s chief of staff, this subjects people like Ms. Damone, who use service animals and whose disabilities are not plainly evident, to discrimination and embarrassment.

“That’s no way to write policy,” said Ms. Jankunis, referring to the use of the what she considers the murky word “reasonable,” and who submitted the issue to Community Board 1 in Manhattan as part of a continuing attempt to clarify the law.

There are 200 to 250 licensed service dogs in New York, according to Jessica Scaperotti, a spokeswoman for the health department, which licenses service dogs.

In the opinion of Cliff Mulqueen, a deputy commissioner at the city’s Human Rights Commission, the city’s current, case-by-case approach, as opposed to the widespread policy Ms. Glick is seeking, is the only possible approach to service animal accommodation.

Saturday, June 28, 2008

Harriet McBryde Johnson: A Life Worth Living

The Wall Street Journal's political newsletter from its opinion editors had a wonderful remembrance of Harriet McBryde Johnson headlined, "A Life Worth Living."

Love it. I think Harriet would approve as well, given her quote in this piece by Christine Rosen:

As Ms. Johnson wrote of herself and others with disabilities: 'We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own.' And as Laura Hershey, her friend and fellow activist, told me, Ms. Johnson 'invited people to understand the value and pleasure of living a life with disability.'

It's an in-depth analysis of the importance of Harriet's contributions to increasing America's understanding of the disability experience.

Federal judge sides with family when Santa Claus wasn't in ADA-accessible building

From the Wichita Falls, Texas, Times Record News on June 26:

A federal judge said the Wichita County Heritage Society showed “studied indifference” to the Americans with Disabilities Act when it denied a little girl access to the Kell House (pictured above) to see Santa Claus.

Judge William F. Sanderson ruled Tuesday the heritage society violated the ADA in denying access to the historic home to Kaelei Kennedy, who is confined to a wheelchair because of a genetic disease.

The family did not request monetary damages, but a hearing July 21 will likely require the heritage society to comply with ADA guidelines and determine payment of attorneys’ fees.

“We are very, very happy there has been has been some justice,” said Shamayn Kennedy, Kaelei’s mother. “We feel it’s not just a win for our daughter, but for all people with a disability. It benefits a huge population getting left out.”

Kaelei was 6 years old in 2004 when her parents attempted to take her to the Christmas season Santa Claus visit at the Kell House. Her mother claimed Kaelei was denied access to Santa, even though the family suggested options other than the child going into the building.

The suit claimed Howard Morris, executive director of the society at the time, told the family the Kell House was exempt from ADA requirements and could not put a wheelchair ramp on grounds because of cost. It also alleged Kell House employees told the family Morris did not want a wheelchair in the house because objects might get broken.

Experts will discuss autism-vaccine case

From the NY Times June 28:

Federal health officials on Sunday will call together some of the world’s leading experts on an obscure disease to discuss the controversial case of a 9-year-old girl from Athens, Ga., who became autistic after receiving numerous vaccinations.

But the government has so far kept quiet a second case that some say is more
disturbing and more relevant to the meeting.

On Jan. 11, a 6-year-old girl from Colorado received FluMist, a flu vaccine, and about a week later 'became weak with multiple episodes of falling to ground' and 'difficulty walking,' according to a case report filed with federal health officials and obtained by The New York Times.

The girl grew increasingly weak and feverish and 'became more limp, appears sleepy, acts as if drunk,' the report said. She was hospitalized and underwent surgery and was finally withdrawn from life support. She died on April 5, according to the report.

Both the 9- and 6-year-olds had mitochondrial disorders, a spectrum of genetic diseases that have received almost no attention from federal health officials. The 9-year-old, Hannah Poling, was 19 months old and developing normally in 2000 when she received five shots against nine infectious diseases. Two days later, she developed a fever, cried inconsolably and refused to walk. In the next seven months, she spiraled downward, and in 2001 doctors diagnosed autism.

No one knows whether vaccinations had anything to do with the girls’ health problems, and the scientific significance of individual cases is always difficult to assess. But suggestions that mitochondrial disorders could be set off or worsened by vaccinations, and that the disorders might be linked to autism, prompted the meeting on Sunday and has brought the disorders sudden national attention.

Friday, June 27, 2008

Blogs abuzz after toddler with autism kicked off American Airlines flight

Jarett Farrell

WTVD-TV in Raleigh-Durham, N.C., had a report June 23 about a toddler with autism and his mother being kicked off an American Airlines flight:

As the American Eagle flight headed down the taxiway, two-and-a-half-year-old Jarett Farrell wasn't a happy traveler.

His mother says she was doing all she could to calm the autistic boy, but got no sympathy from the flight crew.

"If they just would have been a little more understanding, I think that none of this would have been a problem," Mother, Janice Farrell said.

But it became a big problem for everyone on the plane. Farrell says that's because the flight attendant was indignant.

"She kept coming over and tugging his seatbelt to make it tighter, 'This has to stay tight'. And then he was wiggling around and trying to get out of his seatbelt. And she kept coming over and reprimanding him and yelling at him," Farrell said.

A blog post about it on the Chicago Tribune Web site drew dozens of comments.

And Autism writer Lisa Jo Rudy questioned whether this was even a newsworthy story.

Bangladesh surveys disabled people to build a country-wide database

From PR Newswire June 25:

DHAKA, Bangladesh -- The data collection form to be used for the survey in the pilot project on developing a National Database on Persons with Disabilities in Bangladesh has been approved by the Ministry of Social Welfare, Government of the People's Republic of Bangladesh on May 15, 2008.

The National Forum of Organizations Working with the Disabled (NFOWD) and Therap (BD) Ltd. are implementing this project jointly with the Department of Social Services (DSS), Government of the People's Republic of Bangladesh, and the Jatiyo Protibondhi Unnayan Foundation (JPUF).

"With this approval, the project is taking a big step forward," said Priyanka Kabir, who is coordinating it from Therap's end. "The form will be used in the survey keeping in mind the project's goals, which includes identification of the actual number of persons with disabilities in the country, demographic and disability data management, and statistical reports generation.

"We will now begin the most important phase which is data collection and entry," Dr. Nafeesur Rahman, Director of NFOWD believes. "This is a long felt, but giant step forward."

Expressing his optimism about the piloting, he added, "Once this piloting is done, if the Government of Bangladesh allocates adequate budgets in the coming years, we could gradually cover the entire country, and all persons with disabilities could be brought under the national database. This will not only help us getting invaluable information about them in details, but also help the Government, donors and NGOs for practical planning purposes.

"The pilot project is being implemented in 6 out of 64 districts of Bangladesh. The database will store demographic and disability related information of around 200,000 (two hundred thousand) persons with disabilities. The database software will use fingerprint recognition technology for identification and verification of the data entered into the database. Once completed, the database will be available online for the authorized government officials.

Military troops to receive cognitive screening to help identify any TBI later

From the Hartford Courant June 25:

The military will begin giving cognitive tests this summer to troops heading to war, in an effort to get a baseline measure of their reaction time, memory, concentration and other brain functions, which could be referenced in case they are injured.

The introduction of the neuropsychological screening comes in response to pressure from Congress and veterans' advocates. They have been pushing the military to assess the cognitive functioning of all deploying troops so symptoms of mild traumatic brain injury, dubbed the 'signature injury' of the Iraq war, can be detected more easily during and after combat.

Assistant Defense Secretary S. Ward Casscells recently directed military leaders to begin pre-deployment screening of troops by late-July, using a computer-based test known as the Automated Neuropsychological Assessment Metrics, or ANAM, a Department of Defense spokeswoman confirmed in written responses to The Courant.

The testing, which takes about 15 to 20 minutes, will 'allow for greater levels of accuracy when making assessments following injury,' said the spokeswoman, Cynthia Smith.

Some veterans' advocates have complained that the military has moved too slowly in identifying and addressing mild traumatic brain injury, or TBI, a common injury among troops in Iraq and Afghanistan who are exposed to blasts of improvised explosive devices. While shrapnel from the devices can penetrate the skull, the blasts also can cause neurological injuries that are hard to detect.

A study this year by the RAND Corporation estimated that close to one in five deployed service members — or about 320,000 — may have experienced a traumatic brain injury.

Ghana disability law delayed

From Joy 99.7 FM radio:

The Ghana Federation of the Disabled (GFD) says the implementation of disability law is being delayed because the National Council on People with Disabilities to spearhead it is yet to be set up.

Under the disability law passed two years ago the council must be set up to give direction for the implementation of the law.

The law grants rights to education and employment to people living with disabilities in order to improve the livelihoods.

Speaking to Joy News on the occasion of the national day of the disabled, the federation said the delay is hindering the implementation of the law facilitate the process for people living with disabilities to benefit from the law.

One of the federation’s board members, Mr. Lance Akoamuah, said the situation was worrying.

“We have no communication on the formation and working of the council,” he stated. According to him, “if we really want to see the benefits of the Act," the council must be set up without delay.

A member of the federation, Doris Ofori, stressed the need for the Ghanaian to change its attitude towards people living with disability.

She expressed regret the attitude of some people had led to some disabled persons committing suicide.

“We need encouragement from you not sympathy,” she noted.

News of the weird?

This isn't a column in a humor publication or on a comedy show; it's a column in the Idaho Stateman, which says it was a 2008 Pulitzer finalist, and it put a reference to the Autistic Self-Advocacy Network in its "News of the Weird" column.

Inappropriate and stigmatizing? I think so.

It was a paragraph about the New York magazine article about the autism rights movement:

Ari Ne'eman, 20, who has Asperger's syndrome, has formed the Autistic Self Advocacy Network to persuade public opinion that those diagnosed with autism are not ill or disabled but merely different in the way they process information, in that social interaction is very difficult for them. Those without autism, say the activists, are merely 'neurotypical,' and a progressive society must be 'neurodiverse.' Notwithstanding such articulate advocates as Ne'eman, most medical professionals continue to consider autism a potentially devastating affliction, according to a June report in New York magazine.
This topic should not be included in a column with that title and that title should be dropped anyway. CNN has a podcast called "News of the Absurd," but it is satire about real news and doesn't stigmatize people (that I have seen yet). It has a lot of funny animal stories, etc.

Thursday, June 26, 2008

Disabled people in Philippine province ask for support

From the Philippine Information Agency June 25:

Bayombong, Nueva Vizcaya -- Members of the Provincial Federation of Persons with Disabilities (PFPWD) in the province have asked the assistance of local government officials and the support of the LGUs, national government agencies and business establishments in asserting their rights under the Magna Carta for Disabled Persons.

Christopher Joseph Abriam, project manager and program coordinator of PFPWD lamented the low recognition accorded to them by concerned sectors, saying: "that there is a need to aggressively encourage the recognition of the rights of disabled persons.

"We really need these basic rights, specially now that the cost of living conditions is rising, he said during the recent orientation workshop on International and National Laws on persons with disabilities at the Ammungan Hall here."

Abriam said there is a need for the issuance of an Identification Card under the Magna Carta for Disabled Persons which should be given by the National Council for Disability Affairs (NCDA) than the one being issued by the National Council for the Welfare of Disabled Persons (NCWDP).

NCWDP-issued IDs are not usually recognized by establishments. Other IDs recognized by them were those issued by local chief executives, barangay captains and the discount fare IDs, Abriam stressed.

He also called on LGU officials to continue issuing IDs for their legitimate members as part of an advocacy campaign in support of the disabled persons in the province.

Abriam added that local government officials can also craft resolutions in support to the PFPWD sector in the province to help in the overall campaign in generating support and recognition on the rights of the disabled persons such as privileges and incentives.

Even copies of the law supporting the plight of disabled persons should also be given to business establishments in order to generate awareness and support from them, he said.

Abriam said that the plight of their sector in the provinces is still lamentable compared to their colleagues in Metro Manila.

"It is good that we are already organized here and we have a business to start with compared to our comrades in other provinces," Abriam pointed out.

South Carolina Senate resolution honors Harriet McBryde Johnson

From the South Carolina Senate:



Whereas, the members of the South Carolina Senate were deeply saddened to learn of the death of Harriet McBryde Johnson, who died suddenly on Wednesday, June 4, 2008, at the age of 50; and

Whereas, Ms. Johnson, who was born with a neuromuscular disease, was a tenacious, well‑known Charleston disability and civil rights attorney with an articulate voice for the humanity of people with disabilities; and

Whereas, Ms. Johnson received a Bachelor of Science degree in History and a Master’s degree in Public Administration, both with perfect 4.0 grade point averages, and a Juris Doctorate degree from the University of South Carolina; and

Whereas, while in law school, Ms. Johnson was Executive Editor of the Law Review, a third‑year moot court finalist, and received American Jurisprudence awards in three subjects, as well as including being selected as Outstanding Senior by her classmates (Claud N. Sapp Award); and

Whereas, upon graduation from law school, Ms. Johnson was first employed as an associate for the same firm she had worked as a paralegal and later, she opened her own law practice focusing on social security disability, the Americans with Disabilities Act, and employment law; and

Whereas, Ms. Johnson also was a certified mediator and served as an assistant corporation counsel to the City of Charleston for ten years while in her solo practice; and

Whereas, as an attorney, Ms. Johnson mostly handled benefits and civil rights claims for poor and working people with disabilities; and

Whereas, Ms. McBryde was the author of “Accidents of Nature,” “Too Late to Die Young: Nearly Trule Tales from a Life,” “Stairway to Justice: An Overlooked Civil Rights Landmark” in the New York Times magazine, “The Disability Gulag” in the New York Times magazine, and numerous other articles; and

Whereas, Ms. Johnson was Chairwoman of the Charleston County Democratic Party Executive Committee (1988‑2001); City Party Chair (1995‑2000); Secretary of City Party (1989‑95); National Convention delegate (1996); President, Charleston County Democratic Women (1989‑91); County Council candidate (1994); and a certified poll manager. She was also a member of the Board of Directors of Protection and Advocacy for People with Disabilities and served on the Steering Committee of the National Lawyer’s Guild; and

Whereas, Ms. Johnson received numerous honors and awards including the Jean Galloway Bissell Award (2005); the Ernie Goodman Award, National Lawyers Guild (2004); the Justice for All Award, American Association of People with Disabilities (2004); the Sobata Lecturer, Albany (N.Y.) Law School (2004); Thunder & Lightning Award, S.C. Progressive Network (2004); Person of the Year, New Mobility Magazine (2004); S.C. Fiction Competition (2003 and 1999); Women of Power and Grace, The (Charleston, S.C.) Chronicle (2002); Squeaky Wheel, S.C. Independent Living Council (2001); and the Spencer Award, P&A for People with Disabilities (S.C.) (1991); and

Whereas, she was born in Laurinburg, North Carolina on July 8, 1957, and was one of five children of college professors, David and Ada Johnson; and

Whereas, Ms. Johnson had been a Charleston resident since age 10 and survivors include her father, David D. Johnson, mother, Ada A. Johnson, and her siblings, Elizabeth Ross Johnson, David McBryde Johnson, Eric Austin Johnson, and Ross L. Johnson. Now, therefore,

Be it resolved by the Senate:

That the members of the Senate of the State of South Carolina, by this resolution, express their profound sorrow upon the death of Harriet McBryde Johnson and extend their deepest sympathy to her family and many friends.

Be it further resolved that a copy of this resolution be forwarded to the family of Harriet McBryde Johnson.

Mom of banned teen with autism questions priest in hearing

From The Associated Press and WDAY-TV on June 25:

LONG PRAIRIE, Minn. -- A woman who says her autistic child should be allowed to
attend church services put her priest on the stand during a hearing in Long Prairie.

The Church of St. Joseph in the central Minnesota town of Bertha obtained a restraining order against 13-year-old Adam Race, claiming the boy was disruptive and dangerous at Mass.

His mother, Carol Race, is fighting the restraining order. She represented herself at Tuesday's hearing, and questioned the Reverend Daniel Walz for about 30 minutes.

Walz acknowledged that he did not witness all of the alleged disruptions, but said he
believes they happened.

Judge Sally Ireland Robertson took the matter under advisement and said she would rule later.

Afterward, Race said she was disappointed that she wasn't allowed to question the priest about his credibility. She said she and her family will return to the church if the restraining order is lifted.

Australia loses top bioethicist, disability scholar Christopher Newell

Christopher Newell

The international disability studies community has lost another important contributor, bioethicist Christopher Newell, 44, of Tasmania, Australia. I never met him, but talked to him on the phone about our mutual research interests when I was in Australia in 2004. A fine man and a top scholar.

He was also an Anglican priest and the son of former Anglican Bishop of Tasmania, Phillip Newell.

His obituary in the Mercury in Tasmania says:

Newell received an Order of Australia medal in 2001 for services to people with disabilities, to health consumers and the development and practice of ethics. On
receiving the award Dr. Newell joked about why he was worthy of such an honour.

"Why would they give me this? I am a stirrer, I ask questions," Dr. Newell said in a 2001 interview with The Mercury.

As a senior lecturer in medical ethics at the University of Tasmania Medical School, many of Dr Newell's questions saw him labelled as an opponent of euthanasia.

However, he simply claimed euthanasia served to highlight the inadequacies of funding of palliative care.

He was best known in international disability studies circles as a bioethicist and co-author (with frequent collaborator Gerard Goggin) of the 2005 book Disability in Australia: Exposing a Social Aparteid.

Here's a list of some of his other important publications:

Disabled top models hope for successful careers

Britain's Missing Models: Sophie, Debbie, Kelly, Jessica, Kellie and Rebecca

The Daily Mail in the UK profiled the women from the reality show, "Britain's Missing Top Model" on June 26. They all are hoping for successful careers in modeling due to the show.

The show has eight women with differing disabilities competing to prove to a panel of industry experts that they can be a mainstream model.

"The aim of the series is to challenge the boundaries that seem to exist in the beauty and fashion industries and cast new light on our concept of the ideal woman," The Daily Mail says.

The women have a range of impairments from amputations to wheelchair use.

I posted an article about the show back in March.

Russia looks to integrate people with disabilities into society

Vera Samykina, 17, has cerebral palsy and is schooled at home
because getting outside is so difficult.
An in-depth story from The Washington Post June 26:

People with disabilities are literally almost invisible in Russia, isolated in homes, special schools and sheltered workshops. It is a rare event to see a person in a wheelchair or a blind person or someone with Down syndrome out and about on the streets of a Russian city.

Halfhearted attempts to encourage the employment of the disabled by setting quotas for businesses have faltered. Most employers preferred to pay the low fines for failing to meet quotas rather than actually hire disabled people, according to advocates for people with disabilities.

Long after Western countries began concerted efforts to mainstream the disabled in both education and employment, Russia is only beginning to seriously explore the task.
"This is an issue we did not talk about at all for a long time," President Dmitry Medvedev said last month at a meeting with government ministers and advocates for the disabled. "We have the . . . task of providing disabled people with comfortable living conditions and creating a developed rehabilitation system so that they can take a full part in life."

British creator of "Baby Borrowers" previously produced "Celebrity Wheelchair Challenge"

Disclaimer: I saw that "Baby Borrowers" on NBC premiered June 25 and I purposely didn't watch it. To me, it's the same genre as "Wife Swap" -- a sickening show, IMHO, because it doesn't take into consideration the potential effects of these "I-wanna-be-on-TV" adults on reality shows in the lives of the children involved. I remember a particularly scary show in which a fundamentalist Christian wife swapped with a lesbian couple. I felt it bordered on abusive to the daughter of the lesbian couple, who had to endure a person in her home who rejected their family. She's just a little girl and doesn't need to have those kind of people in her home. "Baby Borrowers" scares me in the same way. What are the unknown effects on the babies and children of having these strangers take care of them for a reality TV show? I know they want to prevent teen pregnancy with the show, but I think there are better methods than reality TV to accomplish that goal.

Anyway, here's what creator Richard McKerrow says in Forbes about his past show in Britain, "Celebrity Wheelchair Challenge":

I did a program for Britain's channel 4 many years ago when I looked after disabled programming called Celebrity Wheelchair Challenge. When we did it, we were attacked by disability groups who said, 'Why did you need to put celebrities in wheelchairs to give them the experience of a disabled person? Use real disabled people!' And my response would be, 'I'm a passionate lobbyist of putting disabled people in mainstream television in every way that we can, but we also have to be realistic about the fact that viewers who don't know much about disabilities aren't necessarily going to tune in to that type of programming.'

This way you can do both. Celebrity Wheelchair Challenge was watched by an audience three times higher than would normally watch disabled programs. That meant people who don't know or care about disabilities were suddenly, through the prism of celebrity, brought to understand that Britain isn't a very accessible place for disabled people in wheelchairs. It went on to win an education award.

Knott's Berry Farm changes policy for disabled guests

From the Orange County Register:

BUENA PARK – In an effort to make waiting in lines fair for all, Knott's Berry Farm has adopted a new policy that no longer allows disabled park-goers to head to the front.

The new policy is meant to thwart cheaters: Those pretending to be disabled to get to the front of lines.

Guests with disabilities now have two options:

    • Get a yellow pass and wait on the sidelines for the rest of their party to get through the line.

    • Or, if the disabled person is alone or accompanied by only one other person, he or she can get a blue pass and have a ride operator give them a time when they can return. The time will be what the operator believes it takes to get through the line.

"There were abuses to the system, and at some point the (disabled) line was almost equal to the regular line, so it really wasn't serving its purpose," said a Knott's spokeswoman, Jennifer Blazey.

Knott's is willing to consider special circumstances, Blazey said, in which disabled park-goers could still go to the front of lines.

"We can make accommodations for them," Blazey said.

A Minnesota amusement park made a similar decision this week.

Dolls with disabilities growing in popularity

(This story is getting some play. ABC News did a story about the dolls June 27).

From The Times in the UK:

You'll probably notice almost immediately that its face is not as “regular” as the rosebud-mouthed, snub-nosed dolls that come as standard in toy shops. But if you picked it up and examined it more closely, you'd see that they are not the only features that you don't find on a “normal” doll: a horizontal crease in the palm of the hand, the ears set low on the head, a flattened bridge across the nose, a slightly protruding tongue.

This is a Down's syndrome doll, designed with the aim of giving Down's children a toy that reflects themselves as they are, and not the mainstream version of physical perfection trailblazed by the likes of Barbie and Baby Annabel.

They are not the only “disability dolls” available on the market. Far from it. You can buy dolls with prosthetic limbs, walking frames, hearing aids, “blind” dolls complete with guide dogs. When Mattel launched Becky - Barbie's friend in a wheelchair - it sold out within two weeks. In the past few years, the toy industry has been waking up to the fact that it makes good financial sense to cater for overlooked consumer groups.

Carol Boys, chief executive of the Down's Syndrome Association in the UK, says: “Anything that helps to 'normalise' Down's syndrome and promote inclusivity has to be a good thing. If the Down's syndrome dolls give joy to those with the condition and their siblings, we fully support them. However, there is a range of products on the market of varying quality and accuracy, so we would advise people to purchase with care.” Boys adds that it is difficult to know with any certainty what Down's children generally think of such toys: “We have no idea what they think of such dolls, because there has never been any research done to find out.”

However, some professionals have their reservations. Jenni Smith, a chartered educational psychologist in London, says: “I feel that children who have disabilities, including children with Down's syndrome, tend to see themselves as ‘like everyone else' and to offer a toy that ‘looks like them' may only emphasise the difference.”

People who are making and selling the dolls:

  • Helga Parks creates dolls with Down syndrome. She sells them at: Some derogatory and offensive remarks about her dolls have been flying around the Internet (one blogger said: “The whole thing just reeks of a bad joke”) so Parks put a disclaimer on her Web site. Mostly, she says, the response has been overwhelmingly positive. She has added a line of dolls called “Chemo Friends” for children undergoing chemotherapy. The hairless dolls come with a built-in port below the collarbone, so kids can learn what a catheter is.

  • Donna Moore's company Downi Creations,, produces eight different types of dolls with Down syndrome. Some professionals use the dolls when working with new parents or children with Down syndrome.

Two other articles on The Times Web site describe different reactions to the dolls.

Parent with disability examines needs of other parents with spinal cord injuries

Anita Kaiser and baby Olivia

From The Canadian Press, which is actually a lengthy profile of Anita Kaiser:

In the last six months, Anita Kaiser has not only become a mother, she has also secured her place as a researcher and advocate for parents with disabilities. The same week Olivia was born in January, she also delivered her master's thesis in rehabilitation science at the University of Toronto. Her thesis examined the needs of parents with spinal cord injuries.

Last week, a colleague presented that research to a conference of the Canadian Association of Occupational Therapists in Whitehorse, attended by 300 professionals from Canada and abroad. The study, which involved 12 mothers and fathers with spinal cord injuries, is unique in a field where there has been little research.

About 36,000 Canadians are living with spinal cord injuries, according to the Toronto Rehabilitation Institute, which supported Kaiser's education through a scholarship. Roughly 100 new cases occur each year, and most are among people in their child-bearing years. While some are already parents, a growing number are choosing to start families post-injury.

Kaiser says that's the result of improved social acceptance and accessibility as well as the growth in specialized fertility and obstetrical services for the disabled.

U.S. poor people vulnerable to disabling conditions from neglected diseases

From USA Today:

Tropical diseases that ravage Africa, Asia and Latin America commonly occur among the poor in the USA, leaving thousands of people shattered by debilitating complications including mental retardation, heart disease and epilepsy, an analysis showed Monday.

The diseases, caused by chronic viral, bacterial and parasitic infections, disproportionately strike women and children and are largely overlooked by doctors, says author Peter Hotez of the Global Network for Neglected Tropical Diseases, part of Sabin Vaccine Institute.

Hotez says the diseases go untreated in hundreds of thousands of poor people who live mainly in inner cities, the Mississippi Delta, Appalachia and the Mexican borderlands.

In many cases, he says, the infections cause disabilities that trap sufferers in lasting poverty. His analysis, called "Neglected Infections of Poverty in the United States," appears in the journal he edits, PloS Neglected Tropical Diseases.

As widespread as the diseases are, few people in middle America have heard of them, and many doctors never think to check for them, says Carlos Franco-Paredes of Emory University Rollins School of Public Health, who was not involved in the analysis.

Franco-Paredes says the effect can be devastating: "If you have these infections as a kid, if you're anemic, your ability to learn when you go to school is affected. If you have these infections on a chronic basis, they can affect your ability to become a productive adult and support your family."

Hotez says it is a "disgrace" that diseases causing so much suffering remain at the bottom of the national health agenda.

The diseases are:

  • Congenital cytomegalovirus infection. A virus transmitted from mother to baby in the womb. It occurs in more than 6,000 African-American babies each year; infection can cause mental retardation.
  • Toxoplasmosis. An infection resulting from exposure to parasites carried by cats. As many as 4,000 women give birth to infected newborns in the USA each year, many of whom suffer retardation.
  • Trichomoniasis. A sexually transmitted parasitic infection. It plagues about 880,000 African-American women, causing small ulcers that increase vulnerability to HIV and putting newborns at risk.
  • Toxocariasis. Caused by a parasite. It strikes up to 2.8 million African-American children and causes asthma.
  • Chagas' disease. Caused by a parasite that can severely damage the heart. It occurs in thousands of Hispanics. Estimated cases: 3,000 to less than a million.
  • Cysticercosis. Leading cause of epilepsy for Hispanics, with up to 169,000 cases.