Sunday, November 30, 2008

International Day of Persons with Disabilities will be celebrated Dec. 3

From United Nations Enable. The 2008 theme is "Convention on the Rights of Persons with Disabilities: Dignity and justice for all of us."

The annual observance of the International Day of Persons with Disabilities on December 3 aims to promote an understanding of disability issues and mobilize support for the dignity, rights and well-being of persons with disabilities. It also seeks to increase awareness of gains to be derived from the integration of persons with disabilities in every aspect of political, social, economic and cultural life. The theme of the Day is based on the goal of full and equal enjoyment of human rights and participation in society by persons with disabilities, established by the World Programme of Action concerning Disabled Persons, adopted by General Assembly in 1982. The official title of the Day was changed from International Day of Disabled Persons to International Day of Persons with Disabilities by General Assembly resolution 62/127 on 18 December 2007.

Dignity and justice for all of us is the theme of this year’s International Day for Persons with Disabilities, as well as for the 60th anniversary of the Universal Declaration of Human Rights.

Dignity and justice for all persons are established universal principles. Since its inception, the United Nations has recognized that the inherent dignity and the equal and inalienable rights of all members of the human family are the foundations of freedom, justice and peace in the world. These principles, along with equality and non-discrimination, have guided the work of the United Nations for the past 60 years and are enshrined in various instruments such as the UN Charter and the Universal Declaration of Human Rights, as well as in treaties such as the International Covenants on Human Rights, and the Convention on the Rights of Persons with

These instruments are among those which make up the international human rights framework, are complementary and reaffirm that all human rights are universal, indivisible, interrelated, interdependent and mutually reinforcing.

2008 is a significant year in the international human rights movement given the entry into force on 3 May of the Convention on the Rights of Persons with Disabilities and its Optional Protocol, legally binding instruments which set out the legal obligations of States to promote and protect the rights of persons with disabilities, as well as the 60th anniversary of the Universal Declaration of Human Rights (UDHR). Article 25 of the UDHR provides that each person has “the right to security in the event of unemployment, sickness, disability, widowhood, old age, or other lack of livelihood in circumstances beyond his control".

Several articles in the Convention on the Rights of Persons with Disabilities expound on this right to security, including article 10 on right to life and article 14 on liberty and security of person. Article 28 is more specific in that it asks that States Parties take steps to safeguard and promote that realization of the right to an adequate standard of living and social protection, including ensuring “access by persons with disabilities and their families living in situations of poverty to assistance from the State with disability-related expenses, including adequate training, counselling, financial assistance and respite care”. These instruments mark a clear reaffirmation
that persons with disabilities have the right to full and equal enjoyment of their human rights. They also mark a clear reaffirmation of the principles of ‘dignity and justice for all of us’.

Around 10 per cent of the world’s population, or 650 million people, live with disabilities. The Convention promotes and protects the human rights of persons with disabilities in civil, cultural, economic, political, and social life. However, all over the world, persons with disabilities continue to face barriers to their participation in society and are often forced to live on the margins of society. They are routinely denied basic rights such as to equal recognition before the law and legal capacity, freedom of expression and opinion, and the right to participate in political and public life, such as voting. Many persons with disabilities are forced into institutions, a
direct breach of the rights to freedom of movement and to live in the community.

Eighty per cent of persons with disabilities – more than 400 million people – live in poor countries and there is a strong link between disability and poverty. For example, the statistics on employment for persons with disabilities are staggering. In developing countries, 80 per cent to 90 per cent of persons with disabilities of working age unemployed and in industrialized countries it is estimated to be between 50 per cent and 70 per cent. The rights to education and health are also routinely denied. Ninety per cent of children with disabilities in developing countries do not attend school, says UNESCO.

Approximately 20 million women acquire disabilities as a result of complications during pregnancy or childbirth. This continued marginalization against persons with disabilities highlights the need for all States to sign, ratify and implement the Convention on the Rights of Persons with Disabilities and its Optional Protocol. The United Nations and the global community must ensure that all its work is inclusive of persons with disabilities.

The Millennium Development Goals will not be achieved if persons with disabilities are not included. Efforts to achieve the MDGs and implement the Convention are interdependent and mutually reinforcing.

On this International Day of Persons with Disabilities, as well during the year-long celebration of the 60th anniversary of the Universal Declaration of Human Rights, let us use “dignity and justice for all of us” as a rallying call, as these principles are far from being realized for everyone. Dignity and justice are embodied in the civil, cultural, economic, political, and social rights promoted by the Convention. Therefore, the International Day of Persons with Disabilities is a time to make a renewed commitment to the ratification and full implementation of the Convention on the Rights of Persons with Disabilities and its Optional Protocol.

One of the fundamental obligations contained in the Convention is that national law should guarantee the enjoyment of the rights enumerated in the Convention. States Parties should thus consider the best ways of giving effect to the rights guaranteed by the Convention in domestic law. Implementing legislation should include the terms of the Convention or a specific reference to them, in order to indicate clearly that the laws should be interpreted in accordance with the letter and spirit of the
Convention. Legislation alone will not ensure that persons with disabilities can enjoy their human rights. States will need to formulate effective policies and programmes that will transform the provisions of the Convention into practices that will have a real impact on the lives of persons with disabilities.

For persons with disabilities, as for all persons, the denial of one right can lead to the denial of other rights and opportunities throughout their lives. Article 33 explains that States must set up national focal points governments in order to monitor implementation of the Convention's precepts. States must also set up independent monitoring mechanisms, which usually take the form of an independent national human rights institution.

The full participation of civil society, in particular persons with disabilities and their representative organizations, is essential in the national monitoring and implementation process. International monitoring is achieved via the Committee on the Rights of Persons with Disabilities and the Conference of States Parties. The first meeting of the Conference of States Parties was held on 31 October and 3 November 2008.

This International Day for Persons with Disabilities is a time to make a renewed commitment to these principles of dignity and justice and to ensure implementation of the Convention on the Rights of Persons with Disabilities. All human beings are not only entitled to rights, but also have the responsibility of making universal human rights a reality for all of us.

Father writes children's book so kids learn about Down syndrome

From Delaware County Daily Times in Pennsylvania:

SPRINGFIELD, Pa. — Having little or no contact with a special-needs person before, a child spots someone with Down syndrome in the mall and tugs at mom’s shirt.“Mom, what is wrong with that kid?”

That is the kind of scenario Springfield native Brian Beale hopes his children’s book, based on his 10-year-old son with Down syndrome, “Colin Gets a Chance,” can prevent.

“This is a children’s book to open the lines of communication between parents and teachers and children on a sensitive subject people shy away from talking about,” said Beale, a lifelong Springfield resident.

“They can read the book together and talk about it after, do you know anybody like this? Have you seen anybody like this?”

“Colin Gets a Chance” is about a young boy with Down syndrome who is on a baseball team, but is always left sitting on the bench. During the biggest game of the year, with the score tied, his teammates ask the coach to give Colin a chance to step up to bat.

“It’s about the impact kids have on acceptance and inclusion of the other kids who may not get a chance,” Beale said.

Beale and his wife, Mary, found out Colin had Down syndrome 45 minutes after he was born.

“We were shocked. We didn’t expect that. He is our first child and we had dreams of building a family and having a white picket fence and the whole nine yards, and this curveball came and took us in another direction,” Beale said.

Beale said the couple immediately became activists for disabilities, establishing a charity golf outing to support special-needs organizations, such as the Special Olympics.

In the 10 years of the Lil’ Bealsy golf outing, Beale said the event has raised about $175,000.

“I always wanted to do more to raise awareness of Down syndrome,” he said.

Beale spent about two years working on “Colin Gets a Chance.” His dream was to have Down syndrome children draw for his book, rather than hire a professional, so he contacted local Down syndrome organizations asking for submissions for the illustrations. All of the illustrations were drawn by children with Down syndrome between the ages of 2 and 24, including one illustration from his son, who had a little help from his sister.

Beale said he was often overwhelmed when he would receive the illustrations in the mail.

“Some were just amazing … it was interesting to see how they interpreted the page,” Beale said.

Beale and his wife have two other children, 7-year-old Samantha and 2-year-old Chrissy.

“They’re always around Colin and they accept him. Other kids who don’t know him, they react totally different. Many of them don’t know what Down syndrome is. That’s why I put it in a children’s book with something they can relate to, like baseball,” Beale said.

His book was published by Author House and is available online at and, and is also sold in some independent bookstores.

Beale, who has an English degree and is a corporate recruiter for a mortgage company, said he plans on writing more children’s books and possibly developing a Colin series on acceptance and inclusion of special-needs children.

“It’s been really exciting to have the book published and sell the book, but even more, it’s been rewarding to see the reaction from kids and try to make a difference one kid at time. That’s what the book is about,” Beale said.

Medical columnist says "Eli Stone" misrepresented curative powers of marijuana for MS

From the Los Angeles Times The Unreal World column by Marc Siegel, M.D., an internist and an associate professor of medicine at New York University's School of Medicine.

"Eli Stone"
"The Humanitarian" episode, ABC, Nov. 18

The premise: Attorney Eli Stone (Jonny Lee Miller) has a rich client, Jim Cooper, whose teenage son J.J. has an illness the show characterizes as multiple sclerosis.

J.J.'s supposed multiple sclerosis manifested itself with an attack when he was a young teen. The attack lasted several weeks, during which he couldn't feel anything in his arms. Since then, with symptoms in remission, he has resumed a normal life and is a competitive high school swimmer.

Cooper wants to begin a clinical trial using medical marijuana as a cure for his son, and he is petitioning the Drug Enforcement Administration to allow him to grow his own marijuana for medical purposes (this is legal in California but not under federal law).

Cooper says the National Institutes of Health has two ongoing studies about the effects of cannabis on multiple sclerosis. Cooper's mother died of the disease, and now he fears the same fate for his son.

The medical questions: How common is it for multiple sclerosis to affect children? Are J.J.'s symptoms accurately portrayed? What is the standard treatment and prognosis for the illness? Is there a tendency for cases to recur in future generations? Does marijuana have any potential as a cure?

The reality: Although multiple sclerosis is much rarer in children than adults, it still affects 8,000 to 10,000 individuals in the U.S. under age 18, according to the National MS Society. An additional 10,000 to 15,000 have experienced a symptom suggestive of multiple sclerosis, and some of these will go on to develop the disease as adults.

J.J.'s episode of loss of sensation in his arms followed by remission is realistic, although a first episode like that is not strictly diagnostic of multiple sclerosis, says Dr. Barbara Giesser, clinical director of the multiple sclerosis program at UCLA. Rather, the term for such a first attack is clinically isolated syndrome, a sign that there has been damage to the insulation (myelin) in the brain, spinal cord or optic nerve. Clinically isolated syndrome has an up to 80% chance of progressing to clinically definite multiple sclerosis. But that diagnosis would require evidence of a second attack and additional lesions in the brain, spinal cord or optic nerve.

The show doesn't mention J.J. receiving treatment, but a first episode would be treated with interferon or glatiramer acetate, says Dr. Howard L. Weiner, director of the Partners Multiple Sclerosis Center at Brigham and Women's Hospital in Boston. "The response is reasonably good."

Both Weiner and Giesser say that there is sometimes a role for steroids in reducing symptoms during an acute attack. For nonresponsive cases, natalizumab (Tysabri) is used. It's been quite effective but has been associated with a rare but serious viral brain infection.

If the diagnosis of multiple sclerosis is made, the prognosis of the type J.J. has (known as relapsing-remitting because episodes are recurrent with some recovery in between) is good, and the show's portrayal of J.J.'s condition as inevitably disabling and likely fatal is extremely inaccurate.

Further, though there is a genetic component to the disease -- with a 4% risk of multiple sclerosis in offspring or siblings -- "it may often be severe in one and mild in the other," Weiner says.

There is anecdotal evidence as well as research suggesting that cannabis may be helpful in treating the pain, anxiety, spasticity and tremors associated with the disease in humans.

But, Weiner says, "it has no real potential as a cure."

NBC's "Heroes" reveals character was formerly disabled

In an unexpected twist, the speedster character (meaning she runs in a flash), Daphne Millbrook, was revealed to be disabled in the last few minutes of the Nov. 24 episode of the NBC show, "Heroes." She walked out of her childhood bedroom on crutches with both legs in braces.

The Daphne character (played by Brea Grant) is a little bit villain, a little bit hero. The character began as pure villain, but her softer side is coming forward as she gets closer to hero mind reader Matt Parkman (played by Greg Grunberg). (Both are pictured.)

The Nov. 24 episode began a two-part story in which all the heroes, and villains, lose their powers due to a solar eclipse. Knowing what is about to happen, the Daphne character speeds back to her childhood home on a farm outside Lawrence, Kan., where Parkman goes looking for her.

I assume more about her disability and its "cure" will be revealed in the Dec. 1 episode. But from what I can gather, she was given her speedster power by the villains' leader, which "cured" her disability and now she must do whatever she is told to do by the leader.

Stay tuned. . .because if she decides to become a hero instead of a villain, she may remain a disabled character in the show.

The joy of keeping a disabled child in the family fold

From the Temple Daily Telegram in Texas. In the picture, John Gilliam, LVN with Medical Staffing Network, cares for Dustin Lieu, 15, at his home in Temple, Texas.

Dustin Lieu probably has more medical issues than a person could count.

The 15-year-old has cerebral palsy, epilepsy, static encephalopathy or permanent brain damage and respiratory failure, just to name a few.

Dustin was born dead on Valentine’s Day and brought back to life, his mother, Rhonda Juarez, said.

Ms. Juarez said she didn’t want her son on life support.

“I didn’t want him to suffer … I didn’t want any unnecessary treatments,” she said. “I fought the trach for a long time, until his doctor explained it wouldn’t prolong his life … it was for his comfort.”

Despite the obvious challenges of caring for him, Dustin’s family wants him at home and that’s made possible by the home health care he receives.

John Gilliam, a nurse with MSN Home Care, has been Dustin’s nurse for eight years.

“I’ve worked in hospitals and nursing homes, but I really like this kind of work,” Gilliam said. “I absolutely love little Dustin.”

Gilliam has been Dustin’s only nurse for two years.

Having a nurse, Ms. Juarez said, enables her to be more involved with her other children.

Her oldest is attending Universal Technical Institute in Houston.

Another son is a senior at Temple High and hopes to attend Baylor or Texas A&M.

“He wants to become an orthopedic surgeon and my 13-year-old daughter wants to be a nurse,” she said.

Caring for Dustin is a team effort between Gilliam, Ms. Juarez and her husband.

Dustin requires oxygen 24 hours a day and suctioning several times a day. He takes medications throughout the day and must be watched constantly. Gilliam is with Dustin continuously when he’s on duty.

When Gilliam leaves, the family takes over.

“We’ve had different nurses … I feel safe with John and am comfortable with him being around my other children,” Ms. Juarez said.

Dustin has had upper respiratory and sinus infections, but he hasn’t been hospitalized in years.

“With everyone working together, Dustin has been able to stay at home and out of nursing homes,” Ms. Juarez said.

But, there are other challenges.

“It’s been difficult financially,” she said.

Dustin receives benefits from Medicaid, Supplemental Security Income and the Medically Dependent Children Program. His machines have been paid for and the majority of his medications are covered, as are his nursing hours.

The family has cut back on Dustin’s nursing hours because they would rather not have a different nurse care for him. Also, it’s a way for the family to transition to the time when Dustin ages and loses those nursing hours.

Children with disabilities lose health benefits, including funding for nursing care, when they turn 21.

Ms. Juarez hopes by the time Dustin loses any medical assistance, her other children will have gone to college and will have returned home to help take care of their brother.

“I can’t do a lot of things with Dustin that I used to,” said Ms. Juarez, who injured her back five years ago. “I could never imagine him being in a nursing home again.”

Dustin spent a couple of years when he was quite young in Southland Villa nursing home and his mother was able to get him into her home with help of staff from the Medically Dependent Children’s Program.

“That was killing me and it was hurting my boys … they wanted their brother to be at home,” she said.

Having Dustin at home has been tough on the other children, but it’s also made them strong and more compassionate, their mother said.

“These are not the typical self-absorbed youngsters,” Ms. Juarez said. “Wherever they go they always bring something back for Dustin.”

When her children come across someone with a disability they don’t see the wheelchair or the missing limbs, they just see the person, she said.

“I don’t think I would change anything,” Ms. Juarez said. “Our kids are stronger and we’re very family oriented.”

The family doesn’t feel that they have made sacrifices for Dustin, other than not being able to make much money because it would jeopardize his ability to get Medicaid and other services.

“You can’t make enough money to support everything he needs,” she said. “You can’t save for your kids’ college. You can’t save for retirement.”

When Dustin was born, he was classified as terminal and Ms. Juarez was in the midst of a divorce.

“I hope that parents who have children like my son have an easier time,” she said. “I would tell parents not to second guess what has happened. You can do the best you can to keep them at home.”

There are a lot more children with special needs who are living longer, Ms. Juarez said. She is hoping regulations will change and help will be available to these children as they grow into their 20s and 30s.

“Parents age too and might not be in a position to take care of their children,” she said.

“I don’t want Dustin in a nursing home come hell or high water,” Ms. Juarez said. “I don’t ever want my son away from me, until God takes him.”

Ms. Juarez said she’s counting on her children to take care of their brother if something happens to her.

“Nobody can love him like we do,” she said.

Oregon plans mental health museum in former state hospital building

A letter to the editor in the Statesman-Journal tipped me to this story. The letter writer is Dr. Prasanna K. Pati of Salem, Ore., a retired Oregon State Hospital psychiatrist and a Distinguished Life Fellow of the American Psychiatric Association, who praises the decision to create a mental health museum: " I am absolutely convinced that such a museum will not only promote health maintenance but be a huge tourist attraction, a jewel in the city of Salem."

The AP wrote about the future development of virtual tours of the famous mental hospital featured in "One Flew over the Cuckoo's Nest" in October:

SALEM, Ore. — Tourists interested in exploring the mental hospital made famous in One Flew Over the Cuckoo's Nest will have to settle for a virtual visit.

Public interest in visiting the 125-year-old J Building at the Oregon State Hospital soared after the state Department of Human Services sponsored a series of guided tours on Sept 13, the Statesman Journal reported. State employees led about 200 people through vacated, decaying sections of the building and the sprawling tunnels under it, where some patients had to live.

Publicity from that day led another 1,100 to express interest in visiting the place where the Oscar-winning film starring Jack Nicholson (pictured in the film) was shot.
But state officials decided against additional tours because of the demands on the staff and looming asbestos and lead paint-removal work.

"The public response to touring the historic J Building has been tremendous," the agency stated on its website. "However, due to the hospital's current designation as an active construction site, safety protocols prevent us from providing any further public tours of the J Building.

"We are in the process of developing a virtual tour and invite you to check our website for this feature and other updates during construction. Thank you for your interest in supporting mental health services for Oregonians."

Construction of a new 620-bed psychiatric facility is scheduled to begin next year and be completed in 2011. Plans call for preserving the oldest and most historically significant portions of the J Building and tearing down the rest.

The remodeled portions will house a mental health museum and a resting place for the cremated remains of more than 3,000 former patients who died at the state hospital during its first century.

The Guardian disputes BBC information about Down syndrome birth rates in Britain

From the Bad Science column by Ben Goldacre in The Guardian Nov. 29:

As usual, it's not Watergate, it's just slightly irritating. "Down's births increase in a caring Britain," said the Times. "More babies are being born with Down's syndrome as parents feel increasingly that society is a more welcoming place for children with the condition." That's beautiful. "More mothers are choosing to keep their babies when diagnosed with Down's syndrome," said the Mail. "Parents appear to be more willing to bring a child with Down's syndrome into the world because British society has become increasingly accepting of the genetic abnormality," said the Independent.

Their quoted source was a BBC Radio 4 documentary presented by Felicity Finch (her what plays Ruth Archer), broadcast on Nov. 24. "The number of babies with Down's syndrome has steadily fallen, that is until today, when for the first time ever that number is higher than before, when testing was introduced." I see. "I'm keen to find out why more parents are making this decision." They're not. "I was so intrigued by these figures that I've been following some parents to find out what lies behind their choice."

Felicity. Wait a second. The founding premise of your entire 27-minute documentary is wrong. There has indeed been a 4% increase in Down's syndrome live births in England and Wales from 1989 to 2006 (717 and 749 affected births in the two years respectively). However, since 1989 there has also been a far greater increase in the number of Down's syndrome foetuses created in the first place, because people are getting pregnant much later in life. Risk of a Down's syndrome pregnancy below the age of 25 is about 1 in 1,600. This rises to about 1 in 340 at 35, and 1 in 40 at the age of 43. In 1989 6% of pregnant women were over 35 years of age. By 2006 it was 15%.

The National Down Syndrome Cytogenetic Register holds probably the largest single dataset on Down's syndrome. They have calculated that if you account for the increase in the age at which people are becoming pregnant, the number of Down's syndrome live births in the UK would have increased from 1989 to 2006 not by 4%, but from 717 to an estimated 1,454, if screening and subsequent terminations had not been available. Except, of course, antenatal screening is widely available, it is widely taken up, and contrary to what every newspaper told you this week, it is widely acted upon. More than nine out of 10 women who have an antenatal diagnosis of Down's syndrome decide to have a termination of the pregnancy. This proportion has not changed since 1989. For many parents the decision to terminate will be a difficult and upsetting one, especially later in life, and stories like this create a pretty challenging backdrop for making it.

The National Down Syndrome Cytogenetic Register felt obliged to issue a thorough clarification. The brilliant Behind the Headlines service on the NHS Choices website took the story to pieces in its daily roundup of the real evidence behind the health news (disclosure: I had a tiny hand in helping to set this service up). Everybody ignored them, nobody has clarified, and Born With Down's remains Choice of the Day on the Radio 4 website.

Wheelchair user prepares for Kilimanjaro climb

From The San Francisco Chronicle: (You can see pictures and a video of Coomber hiking on the Chronicle Web site.)

Bob Coomber cannot walk, but he sure can hike.

The disabled Livermore outdoorsman is preparing for the hike of his life - an ascent of 19,000-foot Mount Kilimanjaro in Africa or 22,841-foot Cerro Aconcagua in South America.

If he pulls it off, he will be the first person to climb either mountain in a wheelchair.

"I have no idea if it's doable, but I would love the opportunity to just get there and start off," Coomber said. "I have to do something to prove to myself that I haven't reached the zenith of my life yet."

The Americans with Disabilities Act was not designed for people like Coomber, a 53-year-old adventurer known throughout the Bay Area as "Four Wheel Bob."

He got the nickname because he was regularly spotted pushing his wheelchair up mountains, down rocky gorges and along dusty trails in out-of-the-way places. He has been on virtually every hiking trail in the Bay Area, and last year he became the first wheelchair hiker to reach the summit of 14,246-foot White Mountain in the eastern Sierra, the third-tallest peak in California.

He does it, he says, because he loves nature and because the fruits of his labor are so rewarding. Now he is preparing for the most difficult unaided mountain climb anyone on a wheelchair has ever attempted.

Coomber originally chose Kilimanjaro because it is the tallest mountain in Africa and it has a hiking trail leading to the top. Aconcagua was recently added as a possibility because it is the highest mountain in the Americas and also has a relatively smooth trail. The choice of which one to climb will be made based on funding, sponsorships and whether he can find an outfitter willing to spend at least a week and possibly two weeks guiding him on the mountain.

"I figured about 15 years ago that as long as I could keep the chair moving in the right direction, I was going to keep pushing it," Coomber said. "I feel better physically than any time in my life, quite honestly. There is always an excuse to stay indoors. I'm just not much of a giver-upper."

Late last month, Coomber completed a four-day, 20-mile trek along the Diablo Regional Trail from Round Valley Regional Preserve to Diablo Foothills Regional Park, a solo expedition he had long wanted to complete.

"It's not ADA accessible, but I don't do much that is," he quipped from his Mount Diablo campsite on the last day of the tour.

His training will include a trip to Arizona next month with his wife, Gina, to tackle the four peaks known as South Mountain, Camelback Mountain, Papago Peak and Piestewa Peak.

Coomber, a collections supervisor at Wells Fargo Bank in Walnut Creek, has worked hard in the gym to increase his strength and endurance, but climbing Kilimanjaro or Aconcagua is beyond anything he could prepare for with weights or on Bay Area trails. Because he has had problems with high altitudes in previous climbs, the effort could be life-threatening.

"That's been my nemesis," he said. "If all I got were headaches like most people, I would be fine. But I get nausea, and I can't keep water down at altitude. I have to take extra time."

His determination is, however, unmatched. That's out of necessity. Nothing has ever come easy for Coomber, who grew up in Piedmont and developed juvenile diabetes in his early 20s.

The disease caused numbness and weakness in his legs, a condition known as neuropathy. But Coomber, who had spent his childhood hiking, fishing and backpacking, wasn't about to let the disease stop him.

He kept hiking while enduring a regimen of blood sugar tests and insulin injections. Then one sunny July day in 1990, he fell, and the brittle bones in his leg shattered. He struggled to rehabilitate his leg and regain his strength, but the problem worsened.

During one period, he suffered five fractures within 18 months. By the time he was 35, simply putting weight on his legs sometimes would cause them to fracture. The condition developed into a debilitating form of osteoporosis, and he was forced into a wheelchair.

At first, he said, he went into a deep depression and just sat at home, but slowly, carefully, he began to reclaim his former life.

He has, over the past few years, wheeled through more than 100 parks in the Bay Area, including all 70 in the East Bay hills. On Aug. 24, 2007, Coomber reached the top of White Mountain after three days. It was his fifth attempt to climb the mountain, which is south of Mono Lake and east of the town of Bishop (Inyo County).
He has since completed a series of treks in the Bay Area and beyond, including 11,459-foot Sonora Peak in the central Sierra earlier this year. Last February, he completed the entire Iron Horse Trail from Dublin to Martinez and back in one day, a total of about 46 miles.

The kind of hiking Coomber does is fraught with danger. With very limited use of his legs, he must turn backward on steep hills so he can push with his arms while his feet are on the ground stabilizing his wheelchair.

Going downhill can be even more hazardous. Coomber improvises switchback turns, his wheels often skidding on loose rocks and dirt.

"I've fallen over plenty of times, but I haven't gotten hurt," he said. "I just pull myself up and get back in."

On his recent trek along the Diablo Regional Trail, he struggled for hours to climb one steep, rocky trail with loose dirt and little traction. The rear suspension and nubby tires on his wheelchair were of little help. The climb took so long that he didn't make it to camp by nightfall and had to sleep instead next to the road.

"It was about 3 miles," Coomber said, "but in Bob miles it was about 20."

But he enjoyed it, he said, because he saw tarantulas, snakes, hawks and other wildlife that most people miss when they are hustling around on foot.

"The slowest person on two legs could do what I do much faster, but he would miss a lot," Coomber said. "I see a lot more because I'm out there a lot longer."

Coomber is on the East Bay Regional Park District advisory committee and works closely with the park helping build trails and consulting on accessibility issues.

The district, in consultation with Coomber, recently released an online accessibility guide providing information about the grade, cross slope, tread width, surface, hazards and obstacles on its trails. His wife is urging him to start the Four Wheel Bob Hiking Club, and they are in the process of planning a wheelchair excursion along the Iron Horse Trail.

"What Bob is proving to us is that we shouldn't try to guess what people can do because he blows your mind every time," said Mike Anderson, the park district's assistant general manager of planning, stewardship and development. "He opened our eyes to the fact that there are many people who can far exceed what was considered accessible, so we should give them good information and let them go."

In 2007, Coomber was inducted into the California Outdoors Hall of Fame. In July he was given the President's Council on Physical Fitness and Sports Community Leadership Award. Nevertheless, he is after a different kind of reward.

Coomber discovered that there is more to a mountain climbing expedition to Africa or South America than just packing up and going. He has been trying to raise the money for the trip through a sponsor or agent without much luck.

"They only want competitive athletes," Coomber said. "I kind of compete with nature, but it would be nice to have Nike on my side."

Still, he feels an obligation to pursue his dream because, he said, it might inspire wheelchair-bound children, war veterans or shut-ins with disabilities to push themselves out of the house and into the vast, beautiful world that still awaits them.

"Everybody's disability is different, but for many who could do what I do, it is too easy to give up," Coomber said. "I always hope that people will see me and decide that they are doing too little with their lives. It would be nice if more people would test their limits ... and it would be nice to share this with people. It's an awful lot of fun."

"The Black Balloon," based on director's brother with autism, opens Dec. 5

From The Los Angeles Times:

Throughout her childhood, Australian filmmaker Elissa Down was constantly running after her youngest brother, Sean, who is autistic, suffers from attention deficit hyperactivity disorder and is a selective mute.

"He would run down the street in his underpants, and I'd pull him out of toilets in people's homes," says Down. "He played in his pooh. He chewed tampons. And of course, I got frustrated, I got angry. I wished he was normal. I wished I had a different family."

Sean, who is now 26, was the inspiration for her first feature film, "The Black Balloon," which opens Friday.

The heartwarming drama, which won best feature film at the Berlin International Film Festival, in the Generation 14plus section, revolves around Thomas (Rhys Wakefield), a 16-year-old who has moved all around Australia because his father is in the army.The family has just relocated into a new home in suburban Sydney. And it
doesn't take long for his oldest brother, Charlie (Luke Ford), who is autistic, has ADHD and is mute, to cause him embarrassment and draw catty remarks from the
neighbors who don't understand autism.

Toni Collette plays their mother, who is dealing with a difficult pregnancy, and model Gemma Ward plays Thomas' beautiful girlfriend, who wants to befriend Charlie.

In real life, Down has three younger brothers, the eldest of whom also is autistic. But she doesn't like to talk much about him or reveal his name, because "he doesn't like to know that people talk about his autism," she says. "He's very intelligent. He is like the 'Rain Man' character."

Brother Sean, she says, was initially diagnosed with ADHD as a child.

"It's when they put him on Ritalin they discovered he was autistic, because all of his behaviors slowed down," Down says. "They noticed there was a repetitive nature to it."

Though the movie is semi-autobiographical, Down didn't want "Black Balloon" to be a memoir of her life.

"It would seem a bit movie of the week," she explains. "We wanted to rework the story and the plot and the characters to fit into a movie structure and to make it entertaining for an audience."

The majority of the response to the film has been overwhelmingly positive, Down says: "Most people love it and laugh and cry."

So she was shocked to learn that some moviegoers have walked out angry.

"It's because some of them realize they were the kid who threw the chocolate milk at the autistic bus or the neighbor [who made rude comments]. Or they say, 'If I was the father, I would have walked out on the family.' I didn't realize the film would make people feel guilty, even though it's an uplifting story about love and acceptance and family."

Down says it wasn't difficult to watch a version of her life unfold during the filming."I see this as a film now, because all of that emotional stuff came out in the writing -- to tell a story honestly from the heart," she says. "But by the time I got to the directing stage, it was a film and characters."

Save for Ford. "I would find myself calling him Sean," she admits. "Luke was so eerily like my brother. My grandma saw a picture of Luke in the paper and thought it was Sean!"

All three of Down's brothers still live at home, with the middle one helping her parents take care of Sean and the older sibling.

"What I am seeing with my brothers is they are getting more into their autistic shell," she says. "The older one doesn't leave the house. Sean will still go out and do stuff. But I think they miss the social interaction they used to get in school."

Singer with autism wows community with her beautiful voice

From The News & Observer in Raleigh, N.C.:

MORGANTON, N. C. - It's open-mic night at the Abbie Normalz bar in downtown Morganton, and the regulars are listening to the entertainer of the moment.

As Charlene Sawyer, (pictured) a bespectacled young woman in jeans and pink Nikes, sings "Danny Boy," they stand still. They don't sip their beers or talk among themselves or puff on their cigarettes. They just listen.

Sawyer sings the old Irish ballad like they've never heard it before, delivering it in a spine-tingling, operatic style, her specialty.

When she finishes, the crowd fills the bar with applause. Sawyer grins and scoops up her orange notebook of sheet music. She knows she nailed it.

What most of the patrons in the bar don't know is that Sawyer is autistic.

Yet she sings opera in four languages and a five-octave range.

"It's an exceptional talent," says Harry Seng, director of creative therapy at J. Iverson Riddle Developmental Center, a state center for people with developmental disabilities where Sawyer accompanies music-therapy sessions on piano for participants.

Because of her disability, Sawyer will probably never sing in a great performance hall. But if she didn't have autism, she likely wouldn't have cultivated her voice to such a degree in the first place. Many high-functioning autistics such as herself nurse obsessions, and Sawyer's obsession is music.

The Catch-22, as her mother, Cyndy Sawyer, calls it, has nevertheless spanned a bridge between the isolation of disability and human connection.

"When she was younger, she didn't interact with people well," Cyndy Sawyer said. "She didn't make eye contact. But she had a need to be on stage and perform."

"It actually makes me feel free, open and free," Charlene Sawyer says as she prepares for the open-mic performance. She forces herself to lock eyes with a stranger as she talks about her music.

"It took me a while to let my emotions open up, because I was closed up for such a long time."

Sawyer, 34, sings whenever she gets the chance, at churches, conferences, retirement homes, anywhere she's invited. She takes voice lessons and practices up to four hours a day, training her rich mezzo-soprano to negotiate the intricacies of dramatic operatic roles.

Sawyer grew up in a musical family. Her grandmother was a classical singer who performed at the Hollywood Bowl in Sawyer's native California. Her father and brothers play guitar.

She started singing around the house at age 5 and taking piano lessons and performing with school choirs at 12. At 14, she started taking voice lessons from a woman who recognized her talent and offered to train her for free.

Around this time, she says, her peers made fun of her because they knew she took special education classes. Instead of the socializing she might have enjoyed as a young teenager, she immersed herself in her budding gift, learning pieces in Italian, Latin, German and French. Doctors didn't diagnose her with autism until she was 17, after her family moved to North Carolina because of her father's work.

When she graduated from high school, she moved into a group home in Cary for people with autism, but she hated it, her mother says, because the other residents were much lower-functioning than she. Her high school chorus teacher referred the family to the Riddle center, which connected her with a local group home in 1991. There, staff helped her find a voice instructor and performance venues.

"She just blossomed," Cyndy Sawyer says.

Fredda Monroe, director of The Enola Group, which operates Sawyer's group home and offers skill development through an arts program called Studio XI, says she wants to market Sawyer to perform at weddings and to perhaps cut a CD of her singing.

Sawyer has written the outline of an autobiography, and Enola staff members are searching for someone to help her write the book. Heidi Thompson, a friend of Sawyer's who accompanies her to see opera performances in Charlotte and works with her at Studio XI, says Sawyer told her she wants to "tell the story of what it's like to be an artist with a disability."

"Most autistic people can't feel or express emotion," Sawyer says. "I do."

Boosting mental health, fighting serious illness with humor

From The AP. In the picture, pancreatic cancer survivor Barbara Wilder, left, and lymphoma survivor Carolyn Smith, center, smile during a laugh therapy session led by an oncology social worker at Montefiore-Einstein Cancer Center in New York.

NEW YORK — The off-color jokes flew around the room. As the anecdotes got bawdier, the laughter intensified. Some recited from memory, others read from notebooks they brought along.

The setting for the hilarity was the Montefiore Einstein Cancer Center at Montefiore Hospital. The participants were cancer patients, some with advanced stages of the illness.

They were taking part in the hospital's monthly "Strength Through Laughter" therapy. It is one of several types of laughter or humor therapy being offered by medical facilities around the country for patients diagnosed with cancer or other chronic diseases.

The programs feature joke sessions, clown appearances and funny movies.

While the verdict is out on whether laughter plays a role in healing, the American Cancer Society and other medical experts say it reduces stress and promotes relaxation by lowering blood pressure, improves breathing and increases muscle function.

On a recent day before Halloween, many of the two dozen patients at Montefiore arrived in costume to "spook cancer."

"The session makes you feel better," said Luz Rodriguez, 57, a breast cancer patient now in remission, who came disguised as a security officer. "I feel healthy when I laugh."

The laughs generated a warmth among the group that was palpable, particularly when Rodriguez changed into an angel costume and went around offering a red rose and a hug or kiss to each of the participants.

Their facilitator, senior oncology social worker Gloria Nelson, started the session five years ago to help cancer patients focus on living, instead of dying.

"They have such amazing strength, but it's a constant challenge, the fear of it coming back, how to go on living knowing you have cancer," said Nelson, who came dressed as the mother of the bride. "Every time they laugh, it's like kicking cancer out the door. You're taking control, you're saying it's not controlling me."

The most famous case of laughter's therapeutic effects on the body was described by Norman Cousins, editor of the Saturday Review, in his 1979 book, "Anatomy of an Illness." He claimed that a combination of laughter and vitamins cured him of a potentially fatal illness.

"I made the joyous discovery that 10 minutes of genuine belly laughter had an anesthetic effect," he wrote.

Still, laughter therapy is not for everyone. Some cancer patients are so overwhelmed with their diagnosis that they are unable to participate. Medical experts stress that laughter and other complementary therapies like acupuncture, massage and meditation are not substitutes for traditional medical treatment but can be used to help relieve the anxiety brought on by the disease.

At the Cancer Treatment Centers of America in Zion, Ill., patients experience another form of laughter therapy that bypasses jokes. In this version, patients practice laughter sounds like "he-he," "ha-ha," and "ho-ho," greet each other with laughter instead of words and engage in games like a pretend snowball fight until laughter overtakes them.

The staff at the center first tried it in 2004. They felt "weird and silly" but when they tried it out with patients the next day, the laughter soon because contagious, said Katherine Puckett, a licensed clinical social worker and a mind-body medicine expert.

The therapy has since been integrated into the culture of the hospital, and is also offered at the center's facilities in Philadelphia, Tulsa and Seattle.

Steve Wilson, a psychologist who runs the World Laughter Tour, which also trains and certifies laughter club leaders, said about two dozen hospitals around the country have asked to be trained in the method in the past two to three years. One hospital wants to try the therapy with lung transplant patients because laughter allows more oxygen to move through the body.

An international program with a similar goal but totally different approach is "Caring Clowns." The Thomas Jefferson University Hospital in Philadelphia uses the program of costumed volunteers to get patients to giggle — or at least smile — and open up.

"One of the challenges of being diagnosed with cancer is preserving your dignity ... when we tell you to put on a gown where the back half is missing and everyone's examining you and asking about bodily functions," said Dr. Richard Wender, former president of the American Cancer Society and the hospital's chief of family medicine.

The clown volunteers, he said, create a sense of comfort that helps narrow the "interpersonal gap" between patient and medical staff.

Robbie Robinson, 52, a non-Hodgkin's Lymphoma survivor, became a certified laughter leader after witnessing the "coping mechanism" laughter offered him as a patient at CTCA.

"Some people came in wheelchairs, some were helped by family and friends. You could tell people were down ... then I noticed that through some stimulated laughter, people started smiling. They forgot their troubles. You could see the pressure come off them."

The nonprofit Rx Laughter, meanwhile, focuses on managing patient pain and improving mental health through comic entertainment, including films and TV clips. It is a unique collaboration between the entertainment and medical fields that was founded in 1998 by Sherry Dunay Hilber, one-time director of prime time programming for ABC and CBS.

Rx Laughter's participation in two large medical studies discovered that patients who watched funny videos during certain painful procedures were more relaxed and tolerated the pain longer. It also found that cancer patients had less pain and slept better after such entertainment. The organization offers a variety of programs for hospitals, nursing homes, cancer support groups and rehabilitation clinics.

"Comic entertainment is at our fingertips 24/7. ... Watching our favorite shows and films can get us through very stressful times — all the more important in light of the cost of psychotherapy that many people cannot afford, and the problematic side effects of too many pain killers," said Hilber.

"Law & Order" revisits Ashley X case

"Law & Order: SVU" focused on the Ashley X case back in January, and I had a post transcribing the scene. (The Ashley X case is the one in which parents in Washington State received permission to stunt the growth of their 6-year-old disabled daughter so her body would remain small.)

"Law & Order," with its usual twist, began its Nov. 26 episode as if it would be "ripped from the headlines" about the crane collapse March 2008 in New York City. (L&O creator and executive producer Dick Wolf explained on NPR's "Fresh Air" in 2005 that although that many ideas for the show are actually "ripped from the headlines," the ideas usually stop there and morph into a completely different plotline.)

And that's what happened in this episode, which you can watch at

In the January L&O:SVU episode, Detective Olivia Benson (played by Mariska Hargitay) argued the disability rights perspective. In the Nov. 26 episode of of L&O, ADA Mike Cutter (played by Linus Roache) argued the disability rights perspective in court, saying the procedure to keep a disabled child small by removing all her sex organs is a violation of the law as an "assault on a handicapped child."

It was interesting that the show had the male ADA outraged by what the parents planned to do, and had the female ADA, Connie Rubirosa (played by Alana De La Garza), voice a perspective in support of the parents. (The two actors are pictured above in a courtroom scene.)

In the episode, ADA Cutter was looking for a way to put the mother of the disabled girl into prison because her actions led to the girl's part-time caretaker ending up in a coma. The caretaker had protested the parents' plan to stunt their daughter's growth and complained to the doctor who originally agreed to do the procedure and then the doctor changed his mind.

The strongest support of the disability rights perspective in the show came when ADA Cutter questioned his witness, a doctor who was against the procedure, which she called "untested." The scene:

Doctor: The surgery will be painful for Lacey [the disabled girl] and the recovery long, and complications from the estrogen can't be discounted.
ADA Cutter: Are there other reasons your hospital's ethics committee refused to sanction this procedure?
Doctor: It's a slippery slope. Keeping Lacey small might make her easier to care for but then why not amputate her legs to make her more portable, remove her larynx to stop her from crying.
ADA Cutter: So you are really saying the convenience of the parents shouldn't be a relevant factor.
Doctor: In my opinion, it is clearly outweighed by the dignity anyone, especially a disabled child, must be accorded. She needs love, not surgery.

The mother argued that the surgery would allow them to keep the child at home with the family rather than being placed in an institution. Because the Medicaid payments would only cover an institution, the mother said keeping the child small would allow them to afford her care at home.

ADA Cutter couldn't get the judge to agree with his argument so he tried to make it part of the plea agreement with the mother, i.e. that she would get probation if she signed an agreement to never have the surgery performed on her daughter. Because this move was not something the district attorney's office should be doing, DA Jack McCoy (played by Sam Waterston) intervened and had it taken out of the plea agreement.

It's interesting that the Law & Order franchise would do another show focused on the Ashley X case. The CBS show "Without A Trace" aired a disability themed show during sweeps last week. It gets me wondering if shows are using guest characters with disabilities to ramp up the drama with hopes of ramping up their ratings.

"Dimmer" on Sundance Channel Nov. 30

"Dimmer," the 2004 short documentary about a gang of visually impaired teens, will air on the Sundance Channel Nov. 30.

The film appeared at the 2005 Sundance Film Festival. The Sundance Channel Web site says, "Talmage Cooley's award-winning documentary short film presents a poignant and memorable snapshot of life within a gang of sight-impaired teenage boys who create their own world among the abandoned factories of Buffalo's rust belt."

Here's a profile of director Talmage Cooley, which discusses "Dimmer," from

The idea of kids wreaking havoc in Buffalo, New York, hardly raises an eyebrow. But blind kids wreaking havoc — now that's interesting. Or so thought Talmage Cooley, who heard rumors about a blind gang of teenage criminals and made them the basis of a two-sentence music video pitch for Interpol. The band was intrigued, and soon the L.A.-based filmmaker was on a plane headed east to the outskirts of the blighted city. He spent three days searching for the gang's leader, who had recently been arrested for riding a dirt bike in a field. The result — which won't be airing on TRL anytime soon — was a short documentary titled Dimmer.

Cooley first gained notoriety at Sundance 2004 with his short comedy Pol Pot's Birthday, which chronicles an imagined surprise party thrown for the grim Cambodian leader. Filmmaking is an unlikely career choice for the West Virginia
native, a former Morgan Stanley bond trader with an MBA. (His resume does include co-writing, with Andy Spade, Public Love, a photo-driven account of sex in public places.) Cooley taught himself film production by taking night classes in New York City; he made Pol Pot’s Birthday in part to experiment with comedy. "When you make somebody laugh," he explains, "they trust you."

Humor returns in Dimmer, which is powerful because the kids have such a wry take on their situation. Indeed, Cooley says he gradually realized his film wasn't about blind kids behaving badly. "The story is about all the things that go into being any teenager," he says. "Rebellion, isolation, longing, frustration."

These themes resonate most for the main subject, Mike, who breaks up with his girlfriend halfway through the film because she's been cheating on him. To purge his misery, he and a friend whale on empty barrels with sticks in a vast, abandoned steel factory. The hollow, ringing cacophony perfectly embodies teen angst, as does the image of the kids, dwarfed by the gaping architecture of ruin. Before long, though, Mike's back to normal, riding his bike along a bumpy sidewalk with his friend on the back. Musing on his unfaithful ex, he says, "I'm blind, so I don't judge people by looks, but that bitch was ugly, dude."

The story of a disabled brother's death

The following article is by Alfredo Santana, who contacted me to tell me about the story he wrote about a public transportation incident involving his disabled brother. He wrote this post for América Tropical, a Spanish-English language blog.

Santana says, "This [blog] site was created by the head of the recently created Spanish Journalism program, to allow journalism students to publish articles and news often ignored, and sometimes rejected by mainstream professional and college newspapers."

He also said that he doesn't think the news media in the LA area cover disability issues enough, so he wrote the story himself. Thanks to Alfredo for honoring his brother by writing about this important issue.

By Alfredo Santana:

On November 2, 2007, the day my brother Ernesto died because of the injuries he sustained in a public transportation minivan, I realized people like him can still pay the highest price because companies like Access Paratransit services offer a disservice to their customers.

I further realized people like Ernesto, who lived most of is life with a disability called Osteogenesis Imperfecta, which makes bones very brittle, struggle too much to achieve small, but important goals that are very frequently ignored by all kinds of media outlets in Los Angeles.

On October 16, 2007, Ernesto was on his to UCLA in a minivan from the company Access Paratransit Services, when the Diego Soriano Lopez, the minivan’s driver crashed a vehicle in front of him. The minivan traveled on the I-5 freeway. My brother suffered two broken legs, and fractured his upper left-rib after the driver failed to install the shoulder belt on him. When the crash occurred, Ernesto, who was riding in the space used for the passengers’ seat, shifted forward and knocked against the dashboard.

The California Highway Patrol police report found Soriano Lopez and Access Paratransit at fault in the accident.

Months before Ernesto’s accident, I had begun to research Access Paratransit, also known as ASI. Several disabled students and adults riders have told me about a series of mishaps and problems they often found whenever they booked rides, and were driven in ASI minivans. Some riders, who asked me no to reveal their names because they fear retaliation from ASI, expressed concerns about the safety conditions and customer service of its ridesharing and ridership programs for the disabled.

They told me about cases in which drivers engaged in verbal fights with passengers about issues of drop-off times, routes configuration and how to tie down scooters and wheelchairs. Several ASI customers believe many drivers pay little attention to issues like how to properly buckle harness straps and seat belts.

At a Los Angeles City Council meeting on March 26, Access customers said the service’s minivans lack space to fit several wheelchairs, and the drivers’ skills are in many occasions inadequate. Some complained that there are drivers who don’t speak or understand English well. They claimed that drivers failed to pinpoint and address problems and either do not understand or ignore concerns voiced by their customers.

Ernesto was admitted to White Memorial Hospital, where he spent one night in the emergency room. The next day he was transferred to Cedars-Sinai Medical Center, where he underwent reconstructive leg surgery. After 14 days in the critical care unit, Ernesto died on Nov. 2, 2007.

My parents filed a lawsuit against ASI, and the civil case was settled out of court in June for $750,000. Dr. Robert Bernstein, an orthopedics specialist at Cedars-Sinai Medical Center and who was Ernesto’s surgeon, said the injuries he suffered during the accident could have been avoided.

“I understand that if Ernesto would have been properly restrained, he wouldn’t have sustained these types of injuries,” Bernstein said. “One would think had he’d been properly restrained, he wouldn’t had the injuries he had.”

Dr. Bernstein said he understood my brother was launched against the dashboard, and actually hit it. The impact, and the lack of shoulder harness caused the life-threatening injuries.

All these happened on the heels of an ASI audit prompted by mounting safety complaints. It found that the agency needed to vastly improve the safety conditions and customer service of its ride sharing and ridership program for the disabled. So far, not a single local news organization has written a story, or produced a newscast about this issue.

Saturday, November 29, 2008

U.S. disabled ski team changes name to Adaptive Ski Team

From First Tracks, an online ski magazine:

PARK CITY, Utah - One of the longest standing teams in the Paralympics is changing its name to better reflect the high level of athleticism of its members to become the U.S. Adaptive Ski Team. Formerly known as the disabled team, the new Adaptive Team includes both alpine and cross country skiing in a program managed under the U.S. Ski and Snowboard Association (USSA), the parent organization of the U.S. Ski Team.

"The athletes of the U.S. Adaptive Ski Team are anything but disabled," said USSA President and CEO Bill Marolt. "These are some of the most physically fit and technically skilled athletes in the world. They have adapted themselves to their physical situation, and have become true world class athletes. The new name represents a much more accurate depiction of what they have accomplished."

The U.S. program has a long history, dating back to 1986 when the USSA first named what was then called the U.S. Disabled Ski Team. The Team was showcased as a demonstration event at the 1988 Olympics in Calgary, then went on to become one of the leaders in the Paralympics, which began in 1992 in Albertville, France.

Similar to its able-bodied counterparts, the U.S. Adaptive Ski Team competes every year in a season long World Cup circuit for both alpine and cross country organized under the International Paralympic Committee (IPC). The sport is also recognized by the International Ski Federation (FIS). Both alpine and cross country will have World Championships in the upcoming 2008-09 season, as well as Paralympics in Vancouver in 2010.

The program continues to be organized through the USSA similarly to those in able-bodied sports, and utilizes the same brand logo as the U.S. Ski Team. The U.S. Adaptive Alpine Ski Team will open its season Dec. 5-7 at The Hartford Ski Spectacular with races in Copper Mountain. The cross country team opens with the ConocoPhillips U.S. Cross Country Ski Championships in Anchorage in early January.

Child is only one on Caribbean island ever to have CP

From News 10 in Tampa, Fla.:

TAMPA, Fla. -- It's one thing to live with cerebral palsy.

It's another thing to live with cerebral palsy on a remote island where no one's ever seen it before.

That's the case for 4-year-old Christopher Simmons (pictured). He's the only person on St. Estatius, a remote island in the Leeward Islands in the Caribbean, to have the neurological disorder.

"I wouldn't say people have discriminated against him, but people didn't understand what he had," Simmons' mother Cristina Duran said through a translator.

After Simmons was born four months premature, he spent three months in the hospital. For four years, he was the only person on the island with cerebral palsy.

But one day, while cleaning houses, Simmons' mother heard about a new student at the local university who also had the disorder. Eventually, she tracked him down and brought him to see her son.

"He was in a wheelchair that didn't fit," Tyler Sexton recalled. "He had tools that were not adequate."

Sexton pledged to find help for Simmons. After a summer break, he came back to the island with a custom-made wheelchair for Simmons, thanks to the Shriners Hospitals for Children in Tampa. Sexton used to work at Shriners.

The hospital agreed to help Simmons, as long as Sexton could get the boy to the United States.

So, Sexton invited 500 guests to a gala in St. Estatius and raised enough money to pay for two trips to Tampa for Simmons and his mother.

"You only handicap yourself by choice. Ten percent of life is what happens to you. Ninety percent is how you react to it," Sexton said.

In October, Simmons underwent surgery at Shriners Hospital for Children in Tampa
that enabled him to walk short distances. Before that, he was unable to walk.

Doctors say he's made significant progress and is currently working toward several other therapy goals.

Sexton is studying to be a pediatrician. He says having hope helps him succeed.

"I've been told I'd be blind, mentally and physical disabled, I would never walk myself, and here we are," Sexton said.

"We're here. And that's what's important."

Hormone treatment under development that may ease symptoms of those with autism

From The Australian Nov. 29:

In some ways 14-year-old Rob Armstrong is like any other teenage boy, given his affinity for computers.

In other ways the differences are striking. Not only do his computer skills exceed those of many of his peers, but he has skills in other areas that his mother Helen describes as "remarkable".

Flashes of brilliance were evident early: he was reading words and music by the age of 2, before he could even speak.

But other things were evident from an early age too, such as the repetitive utterances known as echolalia, and various phobias and obsessions. He also has problems with "face blindness", which means he has difficulty recognising people from their appearance.

Rob has autism, the often severe developmental disorder that interferes with someone's ability to interpret emotions, communicate and relate socially with the world around them. Rob is what is known as "high-functioning", meaning that he does not have an intellectual disability and in many academic subjects, particularly on the mathematical or scientific side, performs to a high level.

"In more abstract matters it's more difficult, and socially there are difficulties," his mother says. "There's a lot of social stuff that leaves him floundering. But there are a lot of really amazing things that kids like Rob have -- loyalty, honesty, truthfulness. And in areas where they are capable, they are extremely capable."

Unfortunately, many other people with autism have more significant problems than Rob: 70 per cent of people with autism have concomitant intellectual disability, while 30 per cent have a normal intellect.

What's more, the overall number of autism diagnoses is soaring.

Bruce Tonge, professor of developmental psychology at Monash University, says in the last 20 years the rate of autism cases has shot up from just four in 10,000 people to 1 in 160.

While much of this increase is due to changes in nomenclature -- many of the people now diagnosed with autism might a few years ago have been labelled with the now-defunct term of mental retardation -- it is not known if some yet-to-be discovered environmental trigger is interacting with the genes involved to cause a genuine rise in cases.

"We hear lots of wacky ideas, but we don't know (if the numbers are really rising)," Tonge says.

In the meantime, Tonge -- who with his Sydney-based colleague Stewart Einfeld is co-director of the Centre for Autism Research, Education and Service -- is supervising a new research study that, if successful, could lead to the development of one of the first treatments for core autism symptoms.

The research, funded by the federal Government's National Health and Medical Research Council to the tune of $180,000 over two years, is testing the ability of a naturally-occurring human hormone, oxytocin, to improve the ability of people with autism to recognise and react to emotions and to interact socially.

Currently, there are no effective treatments that directly tackle the complex and still mysterious disorder, although various drugs (such as antidepressants) and behavioural therapies are available to ameliorate its symptoms.

Oxytocin, sometimes referred to in popular literature as the "love hormone", is believed to help with bonding and the formation of relationships. It is present in both men and women but its functions are not well understood, being released both during childbirth and orgasm.

Tonge says that while autism and a related condition considered part of the same spectrum, Asperger's syndrome, have important differences, those affected share social impairments. "It's the social impairments that we hope oxytocin might target," Tonge says.

"If it improved people's ability to memorise other people's faces and emotions, it could have a very significant impact -- it would be the first treatment that would specifically impact the core symptoms of autism."

Clinical psychologist Adam Guastella, from the Brain and Mind Research Institute at Sydney University where CARES is based, who is leading the study, says previous research has shown that animals given oxytocin are prompted to form monogamous bonds. When given to healthy human volunteers, the hormone improves the ability to "read" emotions on another person's face.

Guastella acknowledges the research is preliminary, but says -- if successful -- the treatment "has the potential to revolutionise the treatment of autism. In the past there has never been an effective intervention to improve social communication problems in autism," Guastella says. "If it produces the effects that have been found in healthy patients, then it will be the first brief intervention to improve emotional perception and social function in autism patients."

The research aims to recruit about 40 males aged 12-20 with an autistic disorder. They will be given the nasal spray to use at home, and be followed up over a period of time.

Guastella says most previous treatments have attempted to reduce anxiety, and involved putting kids on anti-depressants or medication to reduce repetitive behaviours -- which did little to improve social skills, much less autism (the root of the problem).

Behavioural training has been another area of previous research. Guastella explains that the goal behavioural training is to break a task down into several basic steps -- so brushing the teeth could be broken down into picking the brush up, turning it in the hand, raising it to the mouth, moving it up and down or in a circular motion in the mouth.

"What they tended to show was that if you put a lot of effort into training techniques when kids were very young -- you are talking about hundreds of hours -- you would get some improvements in ability to function," Guastella says. "The initial data were quite exciting, and showed people with some mild autism could get to a level where they were functioning almost at a normal level.

"The problem with that sort of training technique is that it's less successful for people with more severe forms of autism ... (and) most parents don't have the money or the support structures in place to be able to complete hundreds of hours a year with young kids.

"That's as far as we have got in improving social skills. It's almost an area that people have given up on -- there hasn't been a lot of research and it hasn't been an area of major focus in the scientific literature because people haven't been sure what else we could do.

"With oxytocin, that's why people have got so excited and are referring to it as a revolution, because it could lead to a whole new wave of treatments."

Stewart Einfeld, who as well as being co-director of CARES with Tonge is also head of child development research at the BMRI, sounds a note of caution, saying while he is "confident" that oxytocin will improve symptoms, it remains to be seen whether that necessarily flows on to a meaningful improvement in patients' lives.

"It's one thing to say that the capacity to understand emotions is improved in an experimental setting," Einfeld says. "It's another thing to say that as a consequence, they are functioning better and are able to get better jobs or are living more independently. You can't be predicting too many long-term benefits until you have done the work."

Meanwhile, Helen Armstrong is pleased her son decided to enrol in the study, because of the potential that a successful treatment might have to improve his ability to recognise faces. She says any effective and simple new treatment would be welcome because accessing existing therapies was a battle.

"We fought tooth and nail to get help early on -- but when your child is 2 1/2 and you have to wait 10 months for an 'urgent' speech pathology appointment, any help makes a big difference," she says.

She has two other children, Rob's 22-year-old sister and 25-year-old brother, who both have traits of Asperger's syndrome. "It doesn't just run in our family -- it gallops," she says.

First venue for Olympics, Paralympics in London 2012 completed

From BBC News in the UK:

The first purpose-built sporting venue for the London 2012 Olympics has been completed with the end of construction at Weymouth & Portland Sailing Academy.

The £15m complex, which will also host the Paralympics events, was bought in under budget and ahead of schedule.

The world-class facility will play host to 400 athletes competing in 10 Olympic sailing categories. National Lottery has raised £375m so far for the 2012 Olympics and Paralympics, it was announced.

The Olympic Lottery Distributor said it had reached half of the £750m Olympics funding target it intends to raise from sales of specially-designed lottery games.

Ralph Luck, of the Olympic Delivery Authority, will join gold medalist Paul Goodison at the unveiling of the sailing academy later.

The British sailing team's successes at the Beijing Olympics included a haul of six medals, four of them gold.

The early completion of the venue will give Britain's competitors a chance to train "well ahead of 2012", said Lord Coe, who chairs the organising committee.

Paul Goodison, who won gold in the Laser class at Beijing, said: "We save a lot of time travelling around the world when we can get out of bed and it is here on our doorstep.

"It is a fantastic opportunity, not just for myself, but some of the youngsters to see us in 2012 and aspire to 2016."

Councillor Howard Legg, Weymouth and Portland council's special projects portfolio holder, said: "It is ahead of time, on budget and opening today.

"It is great news for the community.

"This is a real local effort, and it is not just people involved with sailing.

"We have hoteliers learning different languages to help welcome people here in their own language."

John Tweed, chief executive of Weymouth and Portland National Sailing Academy, said: "With these enhanced facilities they [sailors] will really be able to hone their skills before the 2012 games.

"It is just a fantastic upgrade to what is already here."

A 656ft (200m) breakwater protects the new facilities with a new pier offering two yacht-lifting cranes and a pontoon providing 70 berths for race boats.

The start of construction, using 70,000 tonnes of Portland stone, was delayed to avoid disrupting the nesting season of over-wintering birds around the local coastline.
National Lottery funding will contribute a total of about £2.2bn to the Games to help fund the east London-based Olympic Stadium, a new velopark, aquatics centre, handball arena and hockey centre.

Disabled marathon runner tells victims of cluster bombs that they can still live their dreams

From The Daily Star in Lebanon:

NABATIEH, Lebanon -- Until the day that Hussein Zreik's right foot was blown off by a cluster bomb left over from the summer 2006 war with Israel, the 13-year-old had dreamed of becoming a professional soccer player. A slight, shy boy, Hussein hadn't wanted to get involved when his cousins found the sub-munition in a field near his house in April. He told them to leave it alone. But his warning came too late. It exploded, shattering the bones beneath his knee and with them, his sporting hopes.

So when disabled marathon runner Richard Whitehead, who was born without legs, visited the Nabatieh Rehabilitation center where children who have been maimed by cluster bombs are treated, he hoped to be an inspiration to them.

Whitehead is tall and looks extremely fit. He wears shorts over his high-tech replacement limbs, showing anyone who asks how they work and explaining the technology they use. He appears totally comfortable with his disability.

He traveled to Lebanon from Britain to take part in Sunday's Beirut Marathon and took time out of his pre-race schedule to visit the center at the request of Norwegian People's Aid (NPA), an NGO dedicated to clearing cluster bombs and helping their victims - people like Hussein.

Khaled Yammout, NPA's Mine Action program coordinator said that sports-mad Hussein had struggled to come to terms with his injury when it first occurred. "When I met him in June, he wasn't that enthusiastic about life," he said. "When he spoke about what had happened, he started tearing up."

But Whitehead firmly rejected the idea that disability represents an insurmountable barrier in sport. "You have to stay positive. Barriers placed in front of you can be broken down, whether it's in life or sport," he told the children being treated at the center on Nov. 27.

He should know. Despite being born without legs, he has run six marathons this year alone. His personal best time of three hours and 17 minutes would put many able-bodied runners to shame. "It just shows everything is possible," Whitehead said.

Even before he had the specialist equipment that helped him to achieve his goals, he was determined that his disability would not get in the way of his ambitions. "I trained on my stumps, on my knees, until I got the prosthetics," he said.

Whitehead's trip to Lebanon was partly financed by the British Embassy, who believe that his participation in the marathon will send a positive message to disabled cluster bomb victims in the country.

British Ambassador Frances Guy told The Daily Star that Whitehead could help to combat the "total despair" that many victims feel. "Someone like Richard, who has a disability, shows them that there are things they can achieve. It's about giving them hope," she said.

She said the timing of the marathon, coming just days before delegations from more than 100 countries will meet in Oslo to sign a treaty preventing the use of cluster bombs is "helpful." Part of the treaty governs the support offered to the victims of cluster bombs and NPA's Yammout said that this is an important area. Injuries caused by cluster bombs can cause victims to be robbed of their confidence as well as their limbs, and Yamoud says that the problem is emphasized because of the rural nature of South Lebanese society.

"Men take pride in their ability to be breadwinners, and find it particularly difficult to accept their disability," he said.

But Whitehead said that a positive attitude can make all the difference. "I came here to try and inspire them to stay positive about their future. They can still achieve their dreams and aspirations whether they have a disability or not." When he was finally introduced to Hussein, Whitehead was told of his ambitions to play soccer. "He still can be a footballer - he can do whatever he wants," he said. His message of hope appeared to have the desired effect on Hussein, who Yammout said seems "much happier" than the last time he saw him.

"I'm pleased to see that he could accomplish something, even with a disability," Hussein said of Whitehead.

Whitehead's confidence with his disability, it seems, has already rubbed off on the quiet 13-year-old, whose hopes and dreams of sporting success were stolen by a cluster bomb on a spring day in Southern Lebanon.

Nigerian political leader asks disabled people to stop street begging


Physically challenged persons in the country were on Nov. 26 admonished to desist from the habit of begging for alms by the use of persuasive words and enticements.

They are rather encouraged to use their God given potentials to develop themselves and the society.

Speaker of the House of Representatives, Dimeji Bankole, gave the advice at the opening of a one-day public hearing on a Bill for Nigerians with Disabilities at the National Assembly complex.

He counselled that disability must not be an excuse for anyone to engage in begging.

Bankole, who was represented on the occasion by his deputy, Usman Nafada, said instead of begging, the disabled persons should face the realities that they could translate their challenges to productive ventures.

While assuring that the bill, short-titled, "A Bill for Nigerians With Disability,"' would be passed into law by the House of Representatives early next year, he expressed the hope that the coming of the law would make it possible for physically challenged persons in the country to among other things be gainfully employed.

Bankole assured that Senate would be lobbied to also to pass the bill at the same time.

He said there were significant potentials inherent in every disabled person that could be utilised and called on them to show to the world that they were equal to the task.

Art show features work by people with Asperger's

From The Boston Globe:

DANVERS, Mass. - The artwork is as diverse as you could find at any gallery, from a charcoal drawing of the Maine seashore to psychedelic mindscapes in bright acrylic to a painstaking collage of General William Tecumseh Sherman. What they have in common is that the artists who created them are living with Asperger's syndrome.

Making art is often a part of life for those with Asperger's. "I don't know if it's more than the general population or not. I think it might be, because some of them are very visual. Their visual or perceptual sense is heightened in some way, so they do see things in a way that is different from more typical people," said Dania Jekel, executive director of the Asperger's Association of New England.

"The main point is, people with Asperger's syndrome are extraordinarily different from one another. Some are more detail-oriented, some have more trouble with communication, some are much blinder to faces . . . so it's not unusual that their art looks very different," said Jekel.

The art is on display in the Perspectives exhibit, a collaboration between ArcWorks and the Asperger's Association of New England, through Jan. 5 at the Gallery at Southside in Danvers. ArcWorks is a program that promotes the work of artists with disabilities through North Shore Arc.

Asperger's is a neurological condition, generally considered a form of autism and widely believed to have a genetic basis, according to the society. Although it affects people in many ways, its common forms include great difficulty in social situations and in deciphering social clues such as facial expressions. People with Asperger's seem to process sensory input differently, some finding it overwhelming, some showing a great ability to remember details, especially in visual form. Undiagnosed Asperger's may often be mistaken for simple eccentricity; those who study Asperger's suspect that Vincent Van Gogh and Albert Einstein may have had it.

"For many people with Asperger's syndrome, the social realm is very difficult; it's energy-consuming and it's difficult, the interaction with other people. So doing art and painting is something they can do to express themselves that doesn't involve interaction with other people," said Jekel. "For some people it is therapeutic. It does give them a way to be perhaps a little bit calmer, to sort of express themselves in a way that's not verbal, it's visual."

That's true for John Williams, 27, of Winchester, whose specialty is collages of historic figures such as Sherman and Mao Tse-tung, using small pieces of pictures cut from magazines. His words sometimes halting, sometimes rushed, he talks about an overload of sensory input and how making art is a way "to put some order out of all that chaos."

While he works, "I'm trying to find what I think, what colors will work best . . . it just starts to take on a life of its own as I work along. I try to relax a little. I get in sort of like a trance state . . . I get lost inside it, you could say, for a time anyway."

Art "has brought some level of order to my life for many years," he said. "It has really been the one thing that gives me some sense of empowerment . . . and some confidence as well."

"Just to be recognized and have their work in a show is a very, very positive experience for them, because a lot of them have not had a lot of positive experiences over their lifetime," said Jekel 'They've had lot of struggles with work, friendships, school. Especially the older ones; there were some of them without a diagnosis for many years. Just being received well by the public and having something that they do well, and being recognized for it, is tremendous for them."

Sharleene Hurst of Hampton, N.H., (pictured) endured years of what she calls "hell" before her many struggles and differences were identified as components of Asperger's when she was 39. "Even now, still, I don't completely fit in," said Hurst, 49.

Making art "is like a mental vacation for me, and I try to create mental vacations for other people. It just gives me a chance to unwind and relax and put my concentration on something outside everyday issues," she said.

Now, her bright images feature strange floating eyes and Dali-esque surreal touches, even glow-in-the-dark paint. "I like to go for whimsical more than anything else," she said.

"Many people with their Asperger's syndrome are sort of proud of their Asperger's syndrome. This is something they have that is different from other people, that makes them unique, that makes their artwork unique, and they're proud to be in a community of people with Asperger's syndrome, people who are kind of quirky, who
are different, who are thinking differently, painting and drawing differently," said Jekel. "And [they're happy] to show other people, especially children and young people with Asperger's syndrome, that people with Asperger's syndrome really do have a multitude of different kinds of talents and things that they can do, and ways to contribute to the world."