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: downsyndromedolls.com. 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, downicreations.com, 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.

British teens protest inaccessible theatre

From the The Star in South Yorkshire, UK:

Pupils at a Sheffield special school are calling for changes at the city's theatres after they were told they were unable to go to a show at the Lyceum together because of their disabilities.

The class of 12 teenagers from Norton's Oakes Park School wanted to see the production Horrible Histories next month.

But nine of the 12 use wheelchairs, and the school was told there were only six available spaces for wheelchair users, and four of those had already been allocated.

Rather than allow some children to attend and some stay back in class, the school cancelled the plans.

The pupils are now calling for lessons to be learned, writing personally to the theatres' manager.

Head teacher Pat Johnson said with the Crucible currently being refurbished, it was a golden opportunity to improve facilities there for both disabled children and adults.

"Plainly there are specific problems at the Lyceum but the issue here was that a class with a majority of wheelchair users was unable to attend this performance as a group," she said.

U.S. House votes to restore ADA protections

From The New York Times on June 26:

WASHINGTON — The House passed a major civil rights bill on Wednesday that would expand protections for people with disabilities and overturn several Supreme
Court decisions issued in the last decade.

The bill, approved 402 to 17, would make it easier for workers to prove discrimination. It would explicitly relax some stringent standards set by the court and says that disability is to be “construed broadly,” to cover more physical and mental impairments.

Supporters of the proposal said it would restore the broad protections that Congress meant to establish when it passed the Americans With Disabilities Act that President George Bush signed in 1990.

Lawmakers said June 25 that people with epilepsy, diabetes, cancer, cerebral palsy, multiple sclerosis and other ailments had been improperly denied protection because their conditions could be controlled by medication or were in remission. In a Texas case, for example, a federal judge said a worker with epilepsy could not be considered disabled because he was taking medications that reduced the frequency of seizures.

In deciding whether a person is disabled, the bill says, courts should generally not consider the effects of “mitigating measures” like prescription drugs, hearing aids and artificial limbs. Moreover, it adds, “an impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.”

The chief sponsor of the bill, the House Democratic leader, Representative Steny H. Hoyer of Maryland, said the situation was now bizarre. “An individual may be considered too disabled by an employer to get a job, but not disabled enough by the courts to be protected by the A.D.A. from discrimination,” Mr. Hoyer said.

The chief Republican sponsor, Representative F. James Sensenbrenner Jr. of Wisconsin, said the Supreme Court had “chipped away at the protections” of the 1990 law, leaving millions of Americans with no recourse or remedy for discrimination.

Pakistan works toward a barrier-free environment

Note: Due to time constraints on my part, I am quoting the article as is, which includes some problematic language.

From The News in Islamabad, Pakistan:

The Ministry for Social Welfare and Special Education is committed to provide an enabling environment that would allow full realisation of the potential of challenged persons through their inclusive mainstreaming.

This was stated by Director General, Directorate General of Special Education, Khaild Naeem while addressing at a national conference on ‘Disabilities’ here June 23 to educate people about design manuals, model projects and building bylaws for creation of a barrier-free environment for challenged persons.

Speaking on the occasion, Khalid Naeem said a National Plan of Action-2006 had already been launched to facilitate (access for) disabled persons. He said one of the major thrust areas of this plan was a disabled-friendly barrier free physical environment, which include physical access, transportation, communication and employment.

As a first step, the Director General said that five major cities including Islamabad, Lahore, Karachi, Quetta and Peshawar have been declared disabled-friendly cities and necessary modifications in the already constructed infrastructure are underway in collaboration with the CDA and Provincial/District governments.

“It is the right of the challenged people to have access to all public building, parks, transport and public places," Khalid Naeem said and added, "this will facilitate their mainstreaming and integration in the society to become productive and useful member of the society.”

He said these cities would cater to the needs of special persons with provision of ramps, resting areas, reserved car-parking and service desks in public buildings. He said that persons with disabilities have been allowed to appear in examination of Civil Superior Services, which will open avenues to enter in top level government hierarchy.

He said the Directorate General has also developed a Park for the disabled in the premises of the F-9 Park of Islamabad.He said inadequate infrastructure is a major cause for ill health and disabling conditions.

It is estimated that about 20 per cent to 25 per cent of disabled are thus affected by environments, products, technology and services that are not designed for all.

Khalid Naeem said women and girls with disabilities are facing multiple problems, adding, poverty and disability are also linked in a vicious downward spiral.

According to the World Bank, the proportion of disabled people is 20 per cent among the poor. In post-conflict countries the overall figure also exceeds 20 per cent, he added.

The rapid pace of urbanisation has also led to the concentration of a large number of disabled people into cities where the only means for living often is to engage in begging, he said.

Khalid Naeem said disabled people are seriously under-served by all basic services and only a few percent of disabled children have access to schooling.

Teens invent communication device for their disabled classmates

From The Virginian-Pilot on June 24 (there's also a video of the invention on the Web site):

NORFOLK -- Kent Collins teaches computer systems classes and coaches the robotics team at Norview High School.

Down the hall, Dorothy Elkins teaches students with multiple disabilities. Most have cerebral palsy and struggle to communicate.

When Collins received an $8,000 grant to work with his students on an invention, he thought immediately of his colleague.

"He came to me one day and said, 'Is there anything special we can do for your students?' " Elkins said.

The result is the "Conversation Starter," a device that Collins' students hope will help those with cerebral palsy communicate better.

To research their invention, Collins' team of teens visited with Elkins' class and traveled to St. Mary's Home for Disabled Children. They learned that communications devices cost between $2,000 and $10,000 and that some require six hours of charging for eight hours of use. People with limited movement were unable to handle most models.

Working on Wednesday afternoons and some weekends, the students designed, built and programmed their instrument.

As a person presses down on a single button, the computer scrolls through a list of letters or words. To select a letter, word or phrase, the person lets up pressure on the button. The device also remembers frequently used phrases.

The students estimate the cost of the "Conversation Starter" at about $800.

Missouri establishes commission on autism

Missouri Lieutenant Governor Peter Kinder signed a bill to establish a commission on autism in that state on June 23, according to Ozarks First.

The commission will be composed of representatives from state agencies and autism organizations, people with autism, and parents of children with autism and will help guide lawmakers.

The law also creates the office of autism, which will be under the Department of Mental Health's Division of Mental Retardation and Developmental Disabilities.

Teen tells the stories of siblings with autism

Geib siblings

Ellen Geib, who has two siblings with autism, has created an autism awareness video about her family's experience, according to The Meadville, Penn., Tribune. She also wrote a guest column about the experience.

She says: "Autism may be represented by the news or a textbook as just another disorder affecting people today, but it’s more. When I was younger, I couldn’t understand the good that could come from autism. It’s not the end of the world, and it has shaped my life for the better. My goal is to increase autism awareness, and the hope that can be associated with it. I have a desire to continue to spread autism awareness and to help those affected by the disorder — both children and their families."

Toronto Globe & Mail writes in-depth series on mental illness

The Globe and Mail in Toronto has written an in-depth special report on numerous aspects of mental illness called "Breakdown: Canada's Mental Health Crisis." You can access all the stories here.

Amusement park abolishes "special" access for disabled children

From the Fort Mill Times June 25:

SHAKOPEE, Minn. — A new policy at Valleyfair says that guests with disabilities have to wait in long lines for rides just like everybody else.

While some parents of disabled children are dismayed at the policy, saying it is just another hurdle in their children's lives, some advocates for the disabled say they've always wanted to be treated equally.

The amusement park used to have special access entrances that allowed a disabled guest and three others to bypass the long lines.

Valleyfair's parent company, Ohio-based Cedar Fair Entertainment, said some people were abusing the previous policy.

"We want to be as fair as possible for our disabled patrons, and make their day as memorable as it is for everyone else," spokeswoman Stacy Frole said. "But we also wanted to keep a policy that others don't take advantage of."

Valleyfair's Web site says the new policy, enacted in time for this season, is an effort "to be fair to all guests."

Joan Willshire, executive director of the Minnesota State Council on Disability, said the new policy seems to be legal, and her office has not received any complaints about it.

"They didn't have to allow people to go to the front of the line, so to speak," she said. "At the end of the day, what we all want to strive for is being treated like everybody else. So we will all have to gain patience."

Australian senator calls for inclusive education

The Boyce Family

From the Courier-Mail June 22:

Queensland liberal Senator Sue Boyce has called for special schools to be scrapped and disabled children sent into mainstream education.

Senator Boyce, who has a daughter with Down syndrome, said it was time someone was "brave" and "crazy" enough to push for total integration of students.

"We won't fix education until we abolish special schools," Senator Boyce told a Down Syndrome Association of Queensland fundraiser last week.

"If mainstream schools had no option but to accept children with disabilities, they would concentrate on how to make it work, not how to avoid getting involved."

And if all the human and funding resources currently tied up in special schools were handed over to the mainstream system, it would be so much easier to make it work."

Senator Boyce said her 24-year-old daughter had always gone to mainstream schools and is now a bakery assistant.

School district creates segregated classes for first graders "held back"

The NY Times reports June 25:

SPRING VALLEY, N.Y. — With the increasing emphasis on standardized testing over the past decade, large urban school systems have famously declared an end to so-called social promotion among youngsters lacking basic skills. Last year, New York flunked 6 percent of its first graders, and Chicago 7.7 percent.

Now the 8,400-student East Ramapo school district in this verdant stretch west of the Palisades is going further, having revived a controversial retention practice widely denounced in the 1980s to not only hold back nearly 12 percent of its first graders this spring but to segregate them in a separate classroom come fall.

The special classes, which are limited to 15 students and follow a pared-down curriculum of reading, writing and arithmetic, are called the Gift of Time and come with extras like tutoring and field trips to a local farm.

School officials say that adding resources — about $2,000 per child, in a district whose average general-education spending per pupil is about $13,000 — and tailoring the lessons for low-performers works. Nearly 80 percent of the 54 first graders and 47 second graders in Gift of Time classes this past school year now read at grade level (although they are, of course, a year behind their age group); at least 30 percent of the younger group and 11 percent of the older group are above grade level, according to district evaluations performed last month.

But some parents have greeted the idea with skepticism, and many education experts say it doubly stigmatizes vulnerable children by combining two practices widely discredited by research: retention and tracking low-achievers.

“This is very worrisome,” said Jay Heubert, a professor of law and education at Teachers College at Columbia University, arguing that both holding back students and separating them can lower self-esteem and academic achievement, increasing the likelihood of dropouts.

COAT applauds The 21st Century Communications and Video Accessibility Act

A press release from COAT, the Coalition of Accessible Technology, which was launched in March 2007 as a coalition of more than 200 national and local organizations that advocates for full access by people with disabilities to evolving high speed broadband, wireless and Internet protocol (IP) technologies:

WASHINGTON, DC, June 19, 2008 - The Coalition of Organizations for Accessible Technology (COAT) is delighted that Representatives Edward Markey (D-MA) and Heather Wilson (R-NM) have introduced "The 21st Century Communications and Video Accessibility Act of 2008."

The bill would amend the Communications Act to ensure that new Internet-enabled telephone and television services are accessible to and usable by people with disabilities and closes existing gaps in telecommunications laws.

Jenifer Simpson, of the American Association of People with Disabilities (AAPD), said, "Once again, as he did in the 1980s and 1990s, Representative Markey is safeguarding an accessible communications future for people with disabilities. We are delighted also that Representative Wilson is co-sponsoring a measure that focuses on accessibility in our digital communications world. We applaud these Congresspersons for their extraordinary leadership and we look now to the Senate to address the issue of accessible communications technologies."

Karen Peltz Strauss, of Communication Service for the Deaf (CSD), said, "This bill is a giant step forward toward bringing the Communication Act's requirements for accessible telephone and television services into this century. The various provisions of this legislation - which focus on new and innovative ways to communicate and receive information - build on existing federal policies to ensure that people with disabilities can take full advantage of the Internet advancements enjoyed by everyone else."

Added Rosaline Crawford, of the National Association of the Deaf (NAD), "Digital and Internet technologies are very exciting. They make it possible for TVs and other video devices - of virtually any size - to receive, transmit, and display TV programs and videoclips with captions. Captions make TV programs and videoclips accessible to people who are deaf or hard of hearing. As more and more TV programs embrace the Internet, people who are deaf or hard of hearing must not be left behind. Captioning TV programs and videoclips shown on the Internet is needed for the same reasons it is needed when shown on TV."

Mark Richert, of the American Foundation for the Blind (AFB), stated: "With this measure, people with vision loss will finally have access to everything from text messaging their friends, watching their favorite TV shows, and receiving critical emergency alerts. Video description and accessible user interfaces on television devices are essential in providing information about events on screen for people who are blind or visually impaired."

Video description is verbal depiction of key visual elements inserted into natural pauses in television dialogue and is activated by the viewer.

The bill includes the following specific measures:Communications Access--Requires access to phone-type equipment and services used over the Internet.

• Add improved accountability and enforcement measures for accessibility, including a clearinghouse and reporting obligations by providers and manufacturers.
• Requires telephone products used with the Internet to be hearing aid compatible.
• Allows use of Lifeline and Link-up universal service funds (USF) for broadband services.
• Allocates up to $10 million/year from USF for equipment used by people who are deaf-blind.
• Clarifies the scope of relay services to include calls between and among people with disabilities and require Internet-based service providers to contribute to the Interstate Relay Fund.Video Programming Access
• Requires decoder circuitry in all video programming devices.
• Extends the closed captioning obligations to television-type video programming distributed over the Internet: covers programming that would otherwise be covered by the FCC's captioning rules, not user-generated content.
• Requires easy access to closed captions via remote control, on-screen menus.
• Requires easy access by blind people to television controls and program selection menus.
• Restores video description rules and requires access to televised emergency programming for people who are blind or have low vision.

Parents must now help sons, daughters wounded by war

The July/August 2008 issue of AARP magazine, reports on parents of adult children who are now becoming long-term caregivers as more military men and women survive the disabling injuries of war.

The in-depth story can be found here.