On the eve of World AIDS Day, and amidst criticism, administration officials today touted the “major accomplishments” made on combating HIV/ADS, but also noted that “much more has to be done.”
Citing statistics: President's Emergency Plan for AIDS Relief (PEPFAR’s) efforts providing life-saving antiretroviral treatment to over 2 million men, women, and children worldwide and PEPFAR's efforts to prevent mother-to-child transmission have helped nearly 240,000 HIV-positive mothers give birth to children who are HIV-free; Secretary of State Hillary Clinton said it is clear that the nation’s investments are having an impact.
“And President Obama is dedicated to enhancing America's leadership in the fight against global AIDS, with PEPFAR serving as the cornerstone of our global health initiative to promote better and more sustainable health outcomes,” Clinton said today.
Yet the Obama administration is facing large criticism from global AIDS and Africa solidarity organizations – today smacking the White House with a D+ rating on the work President Obama has done so far in office.
“With new data showing that worldwide the number one killer of women of reproductive age is HIV, aggressive scale up of AIDS treatment is needed more than ever for the health of communities,” said Asia Russell, Health GAP Director of International Policy. “We are disappointed to report that on his first World AIDS Day in office, President Obama has not made good on his promises to increase funding for effective, life saving programs to fight AIDS around the world.”
Secretary Clinton steered clear of any dollar figures coming out of the White House, not noting that the actual administration investment into PEPFAR will be less next year than what candidate Obama promised, but indicated that the administration is trying to do more, with less.
“Our investments in PEPFAR, the Global Fund, and overall global health have made a positive difference and we will continue our support, but we have to do more. We have to make sure that our programs foster conditions that improve people's lives and in turn promote stability, prosperity, and security. In this time of very tight budgets in our own government and our own people suffering from unemployment, from other kinds of cutbacks in services, we have to do more even here at home. We've seen some of the results of the cutbacks that are happening at the state and local level. So while we're talking about our commitment internationally, let's not forget our fellow citizens who are suffering right now.”
The report, released by Health GAP, Africa Action, Treatment Action Group and the Global AIDS Alliance takes the biggest issue with funding.
““Despite repeated public commitments to expand funding for successful global AIDS programs, the first budget request to Congress prepared by President Obama, for FY2010, would for the first time essentially flat-fund U.S. global AIDS investments—it will not even keep pace with global medical inflation, estimated at 4-10% this year,” the report found.
Later this week Ambassador Eric P. Goosby, MD, U.S. Global AIDS Coordinator will present the five-year strategy for the future of PEPFAR, outlining the important role that PEPFAR will play in transitioning from emergency response to sustainable health systems that help meet the broad medical needs of people with HIV and the communities in which they live.
“In its next phase, PEPFAR programs will support a comprehensive whole-of-government approach in many countries to increase awareness, reduce stigma, and get services to people at earlier stages,” Clinton said.
The strategy, Goosby says, will be followed by a release of annexes providing more detail on evidence based prevention, operational programs, and increased capacity building efforts. The emphasis being on the transition on from emergency response to sustainability.
“PEPFAR’s five-year strategy will focus on sustainability, and sustainable responses,” Goosby says, “programs that are country-owned and country driven.”
With the repeal of the HIV entry ban in October by the administration, the International AIDS Society will now hold the 2010 International AIDS conference in Washington, DC – drawing together an estimated 30,000 researchers, scientists, policy-makers, health care providers, activists and others from around the world.
In a press release issues today the Health GAP, Africa Action, Treatment Action Group and the Global AIDS Alliance called the lifting of the travel ban “superficial when contrasted with the AIDS promises the Administration is breaking.”
A large red ribbon has hung on the North Portico of the White House since Nov. 28 – and will remain for the day Dec. 1.
Monday, November 30, 2009
Every morning, 5-year-old Owen Thigpen (pictured) races into his mom's bedroom and asks, "Is today a hockey day?"
On Sunday mornings, when her towheaded son appears at her bedside — usually at 4:30 a.m. — she can give him the answer he wants to hear.
"Yes," she tells him, groggily, "today is your hockey day."
Owen is like a thousand other hockey-crazed kids here in Brick, which has a proud hockey tradition, except in one regard: He has autism.
Because of his condition, Owen has trouble walking, staying focused and interacting socially, but you'd hardly know that to see him tearing around the rink in his green hockey uniform at the Ocean Ice Palace.
"He's going to be the first autistic kid in the NHL," predicts his mom, Eileen Thigpen of Brick.
Owen is one of about two dozen players in a new hockey program for children with developmental delays. Ranging in age from 5 to 17, most have autism, Down syndrome or a traumatic brain injury.
The Brick Hockey Club started the program this fall when a slot opened up on its Sunday morning schedule. Former club president Alex DePalma, a coaching director with USA Hockey, had heard about similar programs around the country and thought it was worth trying in Brick, which has a large number of children with autism.
DePalma, 47, of Brick concedes he wasn't sure how it would work. Neither did the handful of parents and children who were the first to sign up. But the program so far has surpassed everyone's expectations.
Corporate sponsors and more than a dozen volunteers, including several youth hockey players, signed on to help. A used-equipment drive netted a truckload of uniforms, pads, helmets and skates. "We could probably dress 50 to 60 kids completely," said Justin Ambrosio, 25, of Brick, a club coach who led the effort.
And the kids, some of whom were terrified when they stepped out on the ice that first Sunday morning in October, are skating better each week.
"The first time he was on skates they took away the support bar," said Owen's mom, who calls DePalma "a godsend."
Jim Walsh of Toms River confessed that he thought there was "no way" his son Brian, 7, who has autism and severe sensory issues, would want to play hockey. He was wrong.
"The morning after that first practice, he jumped into bed with us and said, "Want to play hockey?' " Walsh said.
Walsh said that unlike a sport such as baseball, which didn't work for Brian at all, hockey is fast-moving and requires constant concentration just to stay upright. That's excellent therapy for someone like his son.
"I can't tell you how wonderful it is," said Brian's mother, Kerry Walsh, a physical therapist. "He's so much calmer and more focused and organized on Sunday after hockey, and that lasts most of the day."
DePalma says he's overwhelmed by the players' enthusiasm and by how appreciative their parents are to have such an outlet.
"I've coached hockey for 23 years at every level," DePalma said. "This is probably the most rewarding program I've ever been involved with."
Thanks to additional sponsorship, the hockey club has extended the program through Jan. 24 and lowered the price from $160 to $100 per child.
That's great news for Owen Thigpen, who is so pumped up about hockey his mother has to hide his stick during the week because she's afraid he might whack something valuable with it.
She says the program has done wonders for her son's self-esteem. Owen will tell you the same thing himself.
"I think it's my favorite sport," he said, before heading back out onto the ice. "I'm the best skater in the whole world!"
International officials fear the spread of floggings, amputation, torture and death by stoning.
The current and former United Nations experts responsible for human rights in Somalia have condemned a series of stonings in the war-torn country.
Dr Shamsul Bari, an independent expert appointed by the U.N. Human Rights Council to report on Somalia, expressed concern over a rise in stonings and targeted assassinations of women's rights advocates, journalists and U.N. staff in a meeting with Somali Prime Minister Nur Hassan Hussein.
Citing the "deteriorating" human rights situation in the country, Dr Bari called on the interim Somali government to work to end the "cruel, inhuman and degrading" practices.
"I strongly condemn these recent executions by stoning," Dr Bari said in a statement.
The statement was released after Halima Ibrahim Abdirahman, a 29-year-old married woman, was stoned to death after she allegedly confessed to having had sex with a 20-year-old unmarried man in Eelboon, southern Somalia. The young man, who has not been identified, was sentenced to 100 lashes.
That came after a 20-year-old divorced woman accused of sleeping with an older, unmarried man was put in a public square, buried up to her waist and stoned to death in front of a crowd of 200 earlier this month in the town of Wajid, Somalia. Her boyfriend was given 100 lashes.
Abdirahman Hussein Abbas, a 33-year-old man accused of adultery, was stoned to death earlier this month in Merka, a port town south of Mogadishu. His girlfriend is set to face the same fate after giving birth to their child.
Large parts of Somalia are controlled by a group of Islamic militants loosely working together to overthrow the country's Transitional Federal Government under the banner of the 'Al Shabaab' movement.
Under Al Shabaab's interpretation of Sharia, Islamic law, crimes such as theft and adultery are punishable by floggings, amputation, torture or death.
Al Shabaab considers any person to have ever been married - including a divorcee - to be forbidden from having further relations. The punishment is often death by public stoning.
Al Shabaab executions first made international news a year ago when Amnesty International accused the Islamist group of stoning a 13-year-old rape victim to death in the southern city of Kismayo after she was accused of adultery. Al Shabaab claimed the girl was older and had been married.
Bashir Goth, a Somali analyst and the former editor of Awdal News, said Somalis are shocked by the lack of international interest in the actions of Al-Shabaab.
"Where is the international community, where are the human rights organizations?" he told The Media Line. "These are crimes against humanity. They are stoning people, creating an army of handicapped youth with amputations, even stopping people with golden teeth and removing them."
"There should have been an outcry but there is silence from the international community," he said. "How long do we have to tolerate this until they notice."
"It's sheer madness to me," he added. "None of this is indigenous to Somalia and stoning is not something that you apply habitually as they are doing now in Mogadishu. Even in the prophet's time it was done only once."
"I think in their opinion they think this is the only way they can control people," he said. "It's just to put fear into the people."
Dr Ghanim A-Najjar, the former independent expert on Somalia for the U.N. Human Rights Council and a political scientist at Kuwait University, said that while the stonings were appalling, the Somali Islamist groups were not the principal cause of instability in the country.
"We are talking here about groups that claim certain rules and regulations from Islamic Sharia," Dr A-Najjar told The Media Line. "That is objectively deplorable and we call on Al Shabaab not to continue these practices, but that said this is not the cause of instability in Somalia."
"The interim government of Somalia is itself run by Islamists, so the problem is essentially which Islam we are talking about," he said. "This is the result of the loss of statehood and a central government than can control the country with one set of laws. Without this, smaller groups will run the country in accordance with their understanding of Islamic sharia without regard to the regime of international human rights."
"It's the result of the failure of the international community to put more effort into resolving the instability in Somalia once and for all," Dr A-Najjar continued. "Four years after the UN Security Council called for 8,000 international troops, we still don't even have half of them. So clearly Somalia is not an international priority."
A jihadist movement, Al Shabaab members have cited links with Al Qaeda although most analysts believe the affiliation to be minimal. The group has several thousand fighters divided into regional units, which are thought to operate somewhat independently of one another.
EJ Hogendoorn, the Horn of Africa Project Director for the International Crises Group, argued that Al Shabaab's incongruent groups have created a situation in which the more extreme among them have come to represent the whole.
"I think it's important to note that Al Shabaab is a very disparate coalition of like-minded groups," he told The Media Line. "So there are certain localities that have more conservative leadership than others, and for good or bad the more extreme ones get more media attention than others."
"It's not that widespread," he said. "Al Shabaab is fairly sophisticated when it comes to some of its actions, which are carried out in this way not because they believe this is the most appropriate penalty for people but because they believe it sends out a message both internally and externally about what they seek to further: a religiously minded government based on a very conservative, literal reading of the Koran."
Somalia has not had a functioning government since the 1991 ousting of Mohamed Siad Barre. The ensuing years have seen a chaotic system of rival clans controlling various parts of Somalia, with some of the worst fighting in years seen across the country over the past few months.
The battles pit moderate Islamists and soldiers of the shaky, Western-supported transitional government against militants from Al Shabaab.
Al Shabaab began an insurgency in late 2006 with assassinations and suicide bombings against the transitional government and aid workers, particularly in Mogadishu.
Originally the militant wing of the Islamic Courts Union, a group that controlled Mogadishu prior to the invasion by Ethiopian forces, Al Shabaab has made significant gains in the Horn of Africa nation and now controls much of Southern Somalia.
Western government's fear that Somalia's instability may provide a safe haven for terrorist groups, and some foreign militants are believed to have entered Somalia to join Al Shabaab's ranks.
The US has launched selected air strikes against Al Shabaab leaders thought to have ties to Al Qaeda, but analysts say this has only increased their support among Somalis.
The Western-backed Ethiopian military invaded the country in 2007, but many analysts believe this augmented Al Shabaab's insurgency campaign. Battles between Al Shabaab and Ethiopian forces caused roughly 400,000 people to flee the capital in August 2007.
The Ethiopians withdrew in January of this year after Al Shabaab attacked its forces for over 16 months.
African Union (AU) peacekeepers have also been in the country since 2007, but have made little impact with just over 3,000 troops from Uganda and Burundi.
HA NOI — A website for the benefit of disabled people will be launched at a charity music show to mark the International Day for People with Disabilities on December 3.
Viet Nam Television Station’s international channel (VTV4) and the CMC Information and Technology joint stock company will be managing the website www.cuocsongvantuoidep.vn.
The website will give details about Viet Nam’s 10,000 people with disabilities, including Agent Orange (AO) victims, in a bid to raise public awareness of their plight and raise funds.
Profiles will be compiled from information provided by the Ministry of Labour, War Invalids and Social Affairs, care organisations, as well as the individuals themselves and their relatives.
The website will display a photo of the disabled person, their address, and describe their particular disability and what their lives are like. Details of their bank accounts will also be provided for those who wish to make a donation.
AO victims and people with disabilities will also be able to post information about themselves on the website. They will also be able to find details of projects and programmes designed for people with disabilities, and look up potential donors.
The website will display a map of Viet Nam in either green (symbolising life), orange (representing AO victims) and grey (people with disabilities).
When an individual has received enough support to improve his or her life, the colour on their website will change to green.
The website will also display news and videos about people with disabilities and act as a forum for discussion. Information will be updated three times a week.
VTV4 plans to air a programme on the project and highlight particular success stories. Information on donors – organisations and individuals – will also be broadcast.
The website will be officially launched on the Cuoc Song Van Tuoi Dep (Life Is Still Beautiful) show, on which have appeared famous singers such as Thanh Lam, My Linh, Tung Duong, Dam Vinh Hung and Quang Dung.
The show will be shown at Kim Ma Theatre, No 1 Giang Van Minh Street and broadcast live on VTV4. — VNS
NASHUA, N.H. -- Sean Costello plays guitar, has hosted an MTV music program, works at a local company and has Down syndrome.
On Saturday afternoons, Costello, 43, rehearses with the Special Friends Handbell Choir at St. Christopher Parish in Nashua. It's the only handbell choir exclusively for developmentally disabled adults in the Manchester Diocese.
"It was easy to learn to play the bells," said Costello, who also is an altar server and extraordinary minister of holy Communion. He said his favorite song to play is "Amazing Grace."
Parishioners who hear the group play during Mass are inspired by the joy and enthusiasm of the musicians. "They are a great blessing for the parish," said the pastor, Father Richard Kelley.
For parish music director Jeanne Polcari, the idea to start the handbell choir came naturally. Her 20-year-old niece, Beth Donahue, has Down syndrome and is a member of Special Friends, a local group of 35 developmentally disabled adults, ranging in age from 20 to 71.
"All they needed was a chance," Polcari said, noting that people with special needs still encounter significant prejudice in their daily lives. "With the handbell choir, the group is able to get their music out to the community. People can see how capable they are, when given an opportunity."
When the choir members perform, they receive a warm reception. "Many people are moved to tears," said Barbara Keegan, whose daughter Elizabeth plays in the choir. Keegan started Special Friends in 1964 to help Elizabeth prepare for the sacraments. Parents of other special-needs children asked to be included, and Special Friends was launched.
"In the past, people with handicaps were often hidden away, but we can't let them be forgotten," she said. "They can lead very normal lives and they have much to contribute."
Today, that contribution is often overlooked. Ethicists fear that the Down syndrome population is in danger of "disappearing," because a fetal diagnosis of the syndrome often results in abortion. Some estimate the abortion rate in these circumstances is as high as 90 percent.
When the Keegan family welcomed Elizabeth in 1960, they were undaunted by her condition.
"She was gift from God and she has added a great deal to our lives," said Keegan. "From the time she was born, Elizabeth was a star. People are drawn to her. " Elizabeth Keegan, who also is an extraordinary minister of holy Communion, has worked at the same company for 22 years, and is one of the most enthusiastic members of the handbell choir.
"We are one, big, happy family," Elizabeth said of the choir. "Plus, we have a genius, Jeanne, for a teacher," she added.
Polcari's interest in handbells began two years ago when she attended training sessions at a conference in Rhode Island. After launching one parish choir she turned to her second group, the Special Friends. Eight eager musicians signed up, including Polcari's niece Beth.
The impact on the group has been somewhat surprising, even to Polcari, who now serves as the special needs liaison for the American Guild of English Handbell Ringers in New England.
"It has turned out to be very therapeutic," she said, noting that the warm-up exercises and specific movements of the arms and shoulders involved in bell ringing has been beneficial for the choir members, some of whom have physical limitations.
"The action of the bell ringing frees up the body to move in a more coordinated and confident way," she said. "It truly has a healing effect on the body. In addition, the choir members are able to participate in the liturgy of the Mass, which is very important."
Bell ringer Nancy Stocking agrees. "I like to ring the bells," she said. "I feel the prayers in the music."
Choir member Valerie Johnson said she likes "making people happy."
"I enjoy ringing the bells, and I have a lot of gifts to share," she said. "I am God's teacher. I teach people about God, patience, love, and harmony."
Advocates hope Paralympian's airport crawling incident will lead to Australian airlines changing the way they treat disabled passengers
Disability advocates hope the Paralympian Kurt Fearnley (pictured) can do what others are already trying to do in the courts: force Australian airlines to change the way they treat disabled passengers.
Mr Fearnley crawled the Kokoda Track on the palms of his hands - all 96 gruelling, muddy kilometres of it. But with a short crawl through Brisbane Airport this week, the athlete ignited debate about what could be his most difficult challenge yet.
He said he chose to crawl through Brisbane Airport rather than use an unsuitable chair offered by Jetstar after the airline made him check in his own.
A disabled activist, Sheila King, is suing Jetstar for discrimination because the budget airline allows only two wheelchairs on each flight. Ms King has had post-polio syndrome since childhood and had a car accident last year. She was not allowed on a flight to Queensland last year, so she booked a flight on another airline and took Jetstar to the Federal Court.
Meanwhile, Maurice Corcoran and Tom Ferguson had a win over Virgin Blue in September after a three-year battle. They sued the airline for requiring them to travel with carers even though they manage by themselves in day-to-day-life. Virgin Blue has agreed to amend its policy.
Flight Closed, a Public Interest Advocacy Centre report two years ago, unearthed more than 100 examples of airlines failing disabled passengers.
Some were given back their chairs in pieces after a flight, or not at all; some did not have aisle chairs so the disabled could travel from seat to toilet mid-flight; and some would not take larger chairs unless lobbied to do so.
''You might expect things to be improving [but] we found it's getting worse,'' the centre's Robin Banks said this week.
The Federal Government has convened a working group of carriers and disability groups to work through some of the issues.
But Bill Shorten, the parliamentary secretary for disabilities, said three or four new complaints had arrived in his office on Monday, when news of Mr Fearnley's treatment emerged.
Wheelchairs have evolved into very personalised pieces of equipment, as unique as any set of legs, Mr Shorten said. ''It's not good enough to give people a Crimean War-era chair and expect them to make do. Of course it's about money. But the trick is not to do the minimum necessary, but to do the best.''
At a National Disability Awards dinner in Canberra on Monday, Mr Fearnley said there was ''not a chance'' he would ''sit there and be pushed through an airport''.
''A normal person's equivalent would be having your legs tied together, your pants pulled down and be carried or pushed through an airport.''
Jetstar apologised and promised to address the matter with him privately, but noted in a statement that it carries up to 450 wheelchair-bound passengers each week without incident, and that its policy is for them to be transferred from their own wheelchair into a specifically designed airline wheelchair at or near the boarding gate.
But Mr Fearnley has seen an opportunity to use his profile in a lengthy fight being waged between those who fly and those who cannot walk. An apology was not going to cut it, he said.
CHENNAI, India -- Shooting has just been wrapped up in Madurai for the movie Maa', a love story with a difference every single cast and crew member involved in the movie is disabled.
Director Fathima Beevi (pictured) called the shots from her wheelchair. The hero is Deepak TMN, again wheelchair-bound. Cinematographer Rama Rao lost his right leg in an accident. Music director Gideon Karthik is visually challenged. So are most of the playback singers and lyricist Valli, who wrote her thoughts in Tamil Braille.
Devi, costume designer, lost her right hand in an accident, but that didn't stop her from creating every cast member's costume and ironing them daily before the next day's shoot. The choreographer, Amutha Rajini, is afflicted by polio but managed to choreograph a dance involving nearly a hundred physically challenged people. The cooks for the unit, spot boys, drivers& every person involved in the movie is disabled.
"The only people who are not disabled are the two heroines and me because that's part of the story," says Madan Gabriel, professor at the MGR Government Film and Television Institute, and part producer of the movie. The movie is a joint venture Kalai Vizhi between the Tamil Nadu Handicapped Federation (TNHF) and Madan's Art For Change Trust.
"There are two purposes behind the making of this movie," says Deepak, vice-president of TNHF. "We want to highlight the need of the disabled to get representation in policy-making bodies, from the Panchayat to the Parliament, as our basic right and not as charity. We also want to break the stereotype that the disabled cannot make a movie. Of course, there are other embedded messages like the lack of adequate toilets for the disabled," he adds.
The movie begins like most love stories. Girl sees boy in bus and likes him. Then comes the curve ball. She discovers he is physically challenged and her family changes their mind about allowing them to get married. Boy ends up suicidal, but friend tells him to turn his depression into activism. What follows is a montage of how he can fight for the cause of the disabled.
Cast and crew were picked from a talent search that was conducted in June. Movie was shot all through November and is slated for a January 2010 release. "It's a Tamil movie for an international audience," says Madan, who adds that all the prints will have subtitles.
In December, the group will release another documentary on the making of Maa', called Together We create'.
Deepak had this to say when asked whether the movie will make a difference. "All I can tell you is that right after my shoot today, I had to literally get on my hands and crawl into a bus. My new clothes are dirty and I feel miserable. But it's something the disabled face every day of their lives. So I'm definitely hoping for a difference."
NASSAU, The Bahamas -- Iris Adderley (pictured), Consultant, Disability Affairs reminded Bahamian women that as they celebrate 47 years of being able to vote, they must include women with disabilities in their fight for equality.
Women who have a disability face the same issues, concerns and gender biases, and they also desire the same things that women without disabilities want, she said during a recent interview at her office.
“What is it that women with disabilities want? We want the freedom and the right to participate fully and to be included in every facet of our society’s economic, political, religious, cultural and social life,” Ms Adderley said.
“We want accessible and affordable housing, we want the proper support services for our various disabilities, we want to be able to access the educational system, we want to be able to be employed as well as have a social life including the right to enter into relationships.”
According to global statistics, 16 per cent of all women are disabled, she explained.
The statistics also show that girls living with a disability are twice as likely to be sexually assaulted, and women with disabilities are more likely to be victims of violence and to be silenced by it.
In The Bahamas, women who have a disability to fight to be respected for their minds, Ms Adderley said.
“A lot of women with disabilities do not have ‘the look’. Our disabilities may have our bodies not shaped like a normal person’s body.
“We may have a limp or our hands may not be formed properly and those things make us not attractive to the public,” she continued.
The Government is working towards facilitating the needs of persons with disabilities.
The Department of Statistics for the first time will be asking questions for the 2010 Census that will help create support services and programmes for persons with disabilities, the Consultant said.
The data will present a better picture of the prevalence of certain disabilities including answering what the age ranges are for persons with disabilities; whether males or females have more disabilities; the types of disabilities males have versus females and the kinds of disabilities.
The information will also inform of the education level of persons with disabilities, their salaries, whether they are married, single or divorced, whether they were born with a disability or became disabled later in life, she explained.
This will take the guesswork out of determining the proper statistics concerning persons with disabilities in the country, Ms Adderley said.
“We know globally that 10 per cent of any population has a disability, so that means we should have 37,000 plus but we do not know that for a fact.”
“The Census will tell us whether we fit in with the global statistics or whether we are higher or whether we are lower and we will be able to say here is where our population stands.”
She added, “We might think we might have inordinate amount of persons who are blind but what we might find is no the highest population is the deaf.”
The statistics will stop us from guessing and it will also help us internationally because there are things we will be able to be qualified for that we may not be now, she said.
“A lot of times when you ask international organisations for help the first things they say is what is your stats and guessing does not work with them.”
Skipton’s mayor was among town councillors who have been given an insight into the difficulties faced by disabled people.
In an effort to improve disabled access in Skipton, they were pushed in wheelchairs around the town.
The exercise, led by the Skipton Renaissance Team, involved the Mayor, Coun Chris Harbron (pictured), and fellow councillors Andy Solloway and Robert Heseltine following popular routes most likely to be taken by visitors or shoppers.
All three routes started from the town hall car park and were put together with the help of Skipton and Craven Action for Disability (SCAD), Craven Walkers and the Skipton and Craven branch of the MS Society.
As well as the wheelchair users, a group of mothers with pushchairs accompanied the group to show it was not just disabled people who faced difficulties.
John Dawson, chairman of the Skipton Renaissance Team, which promotes the regeneration of the town, said it was a very useful exercise.
“Our team has looked at the issues for the disabled before and felt that this exercise brought home to councillors and others the problems faced by the disabled in Skipton and some possible solutions.”
After the push, the councillors met up with disabled people and carers at the Otley Road Youth and Community Centre where they discussed their findings.
Mr Dawson said: “There was a very positive discussion which led to the suggestion of many possible actions in the town to improve accessibility and facilities for children and parents.”
Coun Andy Solloway, a member of a Craven District Council working party currently looking at facilities for disabled people in the town, told last week’s overview and scrutiny committee meeting that improvements did not have to be costly.
He told the meeting that signs directing wheelchair users to accessible routes could be a way forward.
And he added that although some parts of the town were very accessible – such as Craven Court and the canalside – others were not.
“The High Street is almost like the Berlin Wall as far as a lot of people are concerned, but improving signage would be quite an easy way forward,” he said.
Coun Solloway said it was important that action should be taken and not that possible improvements were just talked about.
He also pointed out that a lot of additional people became temporary wheelchair users after breaking a limb.
“It we make it accessible for disabled people, we make it accessible for all people,” he said.
“It’s not just people in wheelchairs, it’s also people with pushchairs and also the temporarily disabled, and they find out just how inaccessible some areas are.”
One was a middle-aged man who refused to get into the shower. The other was a teenager who was afraid to get out.
The man, Leonard, a writer living outside Chicago, found himself completely unable to wash himself or brush his teeth. The teenager, Ross, growing up in a suburb of New York, had become so terrified of germs that he would regularly shower for seven hours. Each received a diagnosis of severe obsessive-compulsive disorder, or O.C.D., and for years neither felt comfortable enough to leave the house.
But leave they eventually did, traveling in desperation to a hospital in Rhode Island for an experimental brain operation in which four raisin-sized holes were burned deep in their brains.
Today, two years after surgery, Ross is 21 and in college. “It saved my life,” he said. “I really believe that.”
The same cannot be said for Leonard, 67, who had surgery in 1995. “There was no change at all,” he said. “I still don’t leave the house.”
Both men asked that their last names not be used to protect their privacy.
The great promise of neuroscience at the end of the last century was that it would revolutionize the treatment of psychiatric problems. But the first real application of advanced brain science is not novel at all. It is a precise, sophisticated version of an old and controversial approach: psychosurgery, in which doctors operate directly on the brain.
In the last decade or so, more than 500 people have undergone brain surgery for problems like depression, anxiety, Tourette’s syndrome, even obesity, most as a part of medical studies. The results have been encouraging, and this year, for the first time since frontal lobotomy fell into disrepute in the 1950s, the Food and Drug Administration approved one of the surgical techniques for some cases of O.C.D.
While no more than a few thousand people are impaired enough to meet the strict criteria for the surgery right now, millions more suffering from an array of severe conditions, from depression to obesity, could seek such operations as the techniques become less experimental.
But with that hope comes risk. For all the progress that has been made, some psychiatrists and medical ethicists say, doctors still do not know much about the circuits they are tampering with, and the results are unpredictable: some people improve, others feel little or nothing, and an unlucky few actually get worse. In this country, at least one patient was left unable to feed or care for herself after botched surgery.
Moreover, demand for the operations is so high that it could tempt less experienced surgeons to offer them, without the oversight or support of research institutions.
And if the operations are oversold as a kind of all-purpose cure for emotional problems — which they are not, doctors say — then the great promise could quickly feel like a betrayal.
“We have this idea — it’s almost a fetish — that progress is its own justification, that if something is promising, then how can we not rush to relieve suffering?” said Paul Root Wolpe, a medical ethicist at Emory University.
It was not so long ago, he noted, that doctors considered the frontal lobotomy a major advance — only to learn that the operation left thousands of patients with irreversible brain damage. Many promising medical ideas have run aground, Dr. Wolpe added, “and that’s why we have to move very cautiously.”
Dr. Darin D. Dougherty, director of the division of neurotherapeutics at Massachusetts General Hospital and an associate professor of psychiatry at Harvard, put it more bluntly. Given the history of failed techniques, like frontal lobotomy, he said, “If this effort somehow goes wrong, it’ll shut down this approach for another hundred years.”
Five percent to 15 percent of people given diagnoses of obsessive-compulsive disorder are beyond the reach of any standard treatment. Ross said he was 12 when he noticed that he took longer to wash his hands than most people. Soon he was changing into clean clothes several times a day. Eventually he would barely come out of his room, and when he did, he was careful about what he touched.
“It got so bad, I didn’t want any contact with people,” he said. “I couldn’t hug my own parents.”
Before turning to writing, Leonard was a healthy, successful businessman. Then he was struck, out of nowhere, with a fear of insects and spiders. He overcame the phobias, only to find himself with a strong aversion to bathing. He stopped washing and could not brush his teeth or shave.
“I just looked horrible,” he said. “I had a big, ugly beard. My skin turned black. I was afraid to be seen out in public. I looked like a street person. If you were a policeman, you would have arrested me.”
Both tried antidepressants like Prozac, as well as a variety of other medications. They spent many hours in standard psychotherapy for obsessive-compulsive disorder, gradually becoming exposed to dreaded situations — a moldy shower stall, for instance — and practicing cognitive and relaxation techniques to defuse their anxiety.
To no avail.
“It worked for a while for me, but never lasted,” Ross said. “I mean, I just thought my life was over.”
But there was one more option, their doctors told them, a last resort. At a handful of medical centers here and abroad, including Harvard, the University of Toronto and the Cleveland Clinic, doctors for years have performed a variety of experimental procedures, most for O.C.D. or depression, each guided by high-resolution imaging technology. The companies that make some of the devices have supported the research, and paid some of the doctors to consult on operations.
In one procedure, called a cingulotomy, doctors drill into the skull and thread wires into an area called the anterior cingulate. There they pinpoint and destroy pinches of tissue that lie along a circuit in each hemisphere that connects deeper, emotional centers of the brain to areas of the frontal cortex, where conscious planning is centered.
This circuit appears to be hyperactive in people with severe O.C.D., and imaging studies suggest that the surgery quiets that activity. In another operation, called a capsulotomy, surgeons go deeper, into an area called the internal capsule, and burn out spots in a circuit also thought to be overactive.
An altogether different approach is called deep brain stimulation, or D.B.S., in which surgeons sink wires into the brain but leave them in place. A pacemaker-like device sends a current to the electrodes, apparently interfering with circuits thought to be hyperactive in people with obsessive-compulsive disorder (and also those with severe depression). The current can be turned up, down or off, so deep brain stimulation is adjustable and, to some extent, reversible.
In yet another technique, doctors place the patient in an M.R.I.-like machine that sends beams of radiation into the skull. The beams pass through the brain without causing damage, except at the point where they converge. There they burn out spots of tissue from O.C.D.-related circuits, with similar effects as the other operations. This option, called gamma knife surgery, was the one Leonard and Ross settled on.
The institutions all have strict ethical screening to select candidates. The disorder must be severe and disabling, and all standard treatments exhausted. The informed-consent documents make clear that the operation is experimental and not guaranteed to succeed.
Nor is desperation by itself sufficient to qualify, said Richard Marsland, who oversees the screening process at Butler Hospital in Providence, R.I., which works with surgeons at Rhode Island Hospital, where Leonard and Ross had the operation.
“We get hundreds of requests a year and do only one or two,” Mr. Marsland said. “And some of the people we turn down are in bad shape. Still, we stick to the criteria.”
For those who have successfully recovered from surgery, this intensive screening seems excessive. “I know why it’s done, but this is an operation that could make the difference between life and death for so many people,” said Gerry Radano, whose book “Contaminated: My Journey Out of Obsessive-Compulsive Disorder” (Bar-le-Duc Books, 2007), recounts her own suffering and long recovery from surgery. She also has a Web site, freeofocd.com, where people from around the world consult with her.
But for the doctors running the programs, this screening is crucial. “If patients are poorly selected or not followed well, there’ll be an increasing number of bad outcomes, and the promise of this field will wither away,” said Dr. Ben Greenberg, the psychiatrist in charge of the program at Butler.
Dr. Greenberg said about 60 percent of patients who underwent either gamma knife surgery or deep brain stimulation showed significant improvement, and the rest showed little or no improvement. For this article, he agreed to put a reporter in touch with one — Leonard — who did not have a good experience.
The true measure of an operation, medical ethicists say, is its overall effect on a person’s life, not only on specific symptoms.
In the early days of psychosurgery, after World War II, doctors published scores of papers detailing how lobotomy relieved symptoms of mental distress. In 1949, the Portuguese neurologist Egas Moniz won the Nobel Prize in medicine for inventing the procedure.
But careful follow-up painted a darker picture: of people who lost motivation, who developed the helpless indifference dramatized by the post-op rebel McMurphy in Ken Kesey’s novel “One Flew Over the Cuckoo’s Nest,” played by Jack Nicholson in the 1975 movie.
The newer operations pinpoint targets on specific, precisely mapped circuits, whereas the frontal lobotomy amounted to a crude slash into the brain behind the eyes, blindly mangling whatever connections and circuits were in the way. Still, there remain large gaps in doctors’ understanding of the circuits they are operating on.
In a paper published last year, researchers at the Karolinska Institute in Sweden reported that half the people who had the most commonly offered operations for obsessive-compulsive disorder showed symptoms of apathy and poor self-control for years afterward, despite scoring lower on a measure of O.C.D. severity.
“An inherent problem in most research is that innovation is driven by groups that believe in their method, thus introducing bias that is almost impossible to avoid,” Dr. Christian Ruck, the lead author of the paper, wrote in an e-mail message. The institute’s doctors, who burned out significantly more tissue than other centers did, no longer perform the operations, partly, Dr. Ruck said, as a result of his findings.
In the United States, at least one patient has suffered disabling brain damage from an operation for O.C.D. The case led to a $7.5 million judgment in 2002 against the Ohio hospital that performed the procedure. (It is no longer offered there.)
Most outcomes, whether favorable or not, have had less remarkable immediate results. The brain can take months or even years to fully adjust after the operations. The revelations about the people treated at Karolinska “underscore the importance of face-to-face assessments of adverse symptoms,” Dr. Ruck and his co-authors concluded.
Ross said he felt no difference for months after surgery, until the day his brother asked him to play a video game in the basement, and down the stairs he went.
“I just felt like doing it,” he said. “I would never have gone down there before.”
He said the procedure seemed to give the psychotherapy sessions a chance to work, and last summer he felt comfortable enough to stop them. He now spends his days studying, going to class, playing the odd video game to relax. He has told friends about the operation, he said, “and they’re O.K. with it — they know the story.”
Leonard is still struggling, for reasons no one understands. He keeps odd hours, working through most nights and sleeping much of the day. He is not unhappy, he said, but he has the same aversion to washing and still lives like a hermit.
“I still don’t know why I’m like this, and I would still try anything that could help,” he said. “But at this point, obviously, I’m skeptical of the efficacy of surgery, at least for me.”
Ms. Radano, who wrote the book about her recovery, said the most important thing about the surgery was that it gave people a chance. “That’s all people in this situation want, and I know because I was there,” she said while getting into her car on a recent afternoon.
On the passenger seat was a container of decontaminating hand wipes. She pointed and laughed. “See? You’re never completely out.”
Sunday, November 29, 2009
Many start-up bands dream of achieving worldwide fame one day.
That the band Flame (pictured) achieved the dream is remarkable in and of itself. But the band is extraordinary in another respect: Each musician has a physical or mental disability.
Indeed, Flame is the only touring band in the world to be wholly composed of disabled members.
The upstate New York band's members live with conditions that include Down syndrome, cognitive delays, autism, cerebral palsy and blindness.
Band member David LaGrange is blind and mentally disabled. He grew up in an institution and had a passion for rock 'n' roll.
"The Iron Butterfly, Led Zeppelin, sometimes I listen to AC/DC," LaGrange, Flame's drummer, said.
LaGrange studied music and earned a master's degree, but he was told to give up his dreams of becoming a rock star.
He persevered, and for him, the band's success is a dream come true.
Flame was formed six years ago in Gloversville, N.Y., after an area talent contest for the mentally disabled turned up several accomplished musicians.
"Flame is a group of musicians that produce unbelievably great music who just happen to have a disability," Paul Nigra, the band's manager, said.
What started out as an experiment has quickly blossomed. The band had T-shirts, CDs and a tour bus, and has played to cheering crowds.
They've already been on world tour, including to Athens to play at the Parthenon. They performed at Eunice Kennedy Shriver's funeral this summer, drawing compliments from talk show host and media mogul Oprah Winfrey.
Mary King said Flame has been a lifesaver for her daughter, lead singer Michelle King.
King's daughter is autistic and used to be incapable of taking care of herself. Her mother says involvement in the group has changed her daughter's life, although mother and daughter still live together.
"Oh gosh, they have done, I just don't know how to explain, so much that they have done for her, brought her out so much," King said.
LaGrange and other band members live in a group home in Gloversville, upstate New York. He said Flame has given him the kind of family he never had.
"It's fantastic, being able to meet new people, make new friends," he said.
The musicians' goal is have their music played on radio stations everywhere and to demonstrate what the disabled can do if they're given the opportunity.
"Our disability will not stop us," LaGrange said. "We keep going and the more we keep going, we want more people to see what we do."
TOLEDO, Ohio -- Robert Ertle (pictured), 30, has cerebral palsy and can't walk. But he can assemble car parts at a special table designed for him. After one of his frequent brain operations, he's apt to argue with his mother, Dawn Cleveland, that he should go back to work immediately.
"I like to be busy," he says.
Mr. Ertle works for Lott Industries, a nonprofit organization that trains adults with developmental disabilities to do light assembly work and other tasks. In 1993, Lott became the only program of its kind to earn the auto industry's prestigious Quality One supplier award.
Now, Lott and its 1,200 workers are in danger of becoming another casualty of recession. Seven major contracts vanished in late 2007, representing 80% of its business, when Ford Motor Co. closed a nearby stamping plant. Next, in 2008, went the General Motors contract for truck transmission parts. Earlier this year, business with a Honda parts supplier dropped off. Cleaning and other nonautomotive work also dried up as companies brought those functions back in-house to keep their own employees busy.
Lott's struggles show how an economic pall can be particularly tough on the disabled, a group that suffers from chronically low employment. As early as the 1940s, the government launched "Hire the Handicapped" campaigns, urging companies to recruit disabled veterans -- many of them missing limbs -- in a show of patriotism and goodwill. While industry supported the idea in theory, preconceptions about worker limitations often damped opportunities.
Progress has been particularly difficult for developmentally challenged adults -- those who have lifelong impairments such as autism, brain injury or Down syndrome. The Americans with Disabilities Act of 1990 barred employers from discriminating against workers with disabilities and forced them to make reasonable accommodations -- such as wheelchair ramps -- so that qualified disabled people wouldn't be shut out from jobs. But the act didn't do anything to compel companies to hire employees with more severe mental and physical limitations. Unemployment within the nation's developmentally challenged population hovers around 80%.
Lott has been a barrier-breaker. It was founded in the 1940s by Josina Lott, a teacher who believed that children with developmental disabilities should have the chance to make a living. Over the years, it earned a name in the auto industry, where companies like Ford were flush with business and willing to give Lott's eager work force a chance.
"[Lott] was ahead of the curve," says Charles Lakin, who heads a University of Minnesota program that tracks services to the developmentally disabled. Too often, he says, programs provided training for jobs that never came up, like "screwing nuts on bolts, even though no one screws nuts on bolts." Lott also offered benefits, like paid sick leave and 15 holidays.
Despite the Detroit inroads, Lott's ranks are stalled as workers cope with pay cuts and a murky future. Because Lott is classified as a training organization, they do not qualify for unemployment. New gigs aren't likely to materialize soon, due to intense competition in the Toledo area. The city's jobless rate stands above 12%.
Joan Uhl Browne, Lott's president, wakes up in the middle of the night thinking "Oh my God, what am I going to do? It's not like other places where you risk your job and reputation if you mess up," she says. "Here if I screw up, I mess up a lot of people's lives."
All of Lott's workers have developmental impairments. Some are in wheelchairs. Others have autism. Over the years, they've tried with little success to work in restaurants or supermarkets, wiping tables and stocking shelves. One deaf man was dismissed from a local grocery for poor communication skills.
For many, the realities of the downturn are tough to process. Lott's employees don't understand why their work went away or that broader remote forces -- like oil prices and imports -- have been partly to blame. They thought they had done something wrong. Many refused to do other work, less out of stubbornness than bewilderment. "I do Ford. I make those cars," they would tell Gail Little, the Lott supervisor who was the customer liaison with Ford. "I would say, 'Honey, Ford isn't here."
Some had been with Lott since high school. Now middle aged, they had come to rely on Lott for a livelihood and self esteem that is often elusive for those with disabilities.
Eduard Kemp, 46, has had seizures since he was 6 and lives with his mother, Pearline, 79, in Toledo. A few years ago, after her husband died, Pearline suggested moving south to Memphis to be with her family. "He didn't want to move because he loves Lott," she says. His co-workers elected him president of the employee council. Eventually, he earned enough at Lott to buy his own drum set and computer. Because of employees like him, "we have to find work," says Ms. Uhl Browne.
At this point, Lott's revenues are less than half of what they were two years ago. With business evaporating, Lott began burning reserves to maintain its average $101,000 biweekly payroll. Wages and sick pay were reduced, although no workers have been released.
Ms. Uhl Browne's small staff has been scrambling to replace the auto contracts. They've cast a wide net, cold-calling businesses offering to label bottles and bundle linoleum. While dining at the bar of a local restaurant, Ms. Uhl Browne overheard a conversation between a father and son regarding their bookselling business. They needed to unload unwanted volumes. "I butted in," she says. A deal to sell Lott's document destruction services was later struck.
Lott had scored its first contract with Ford in 1980, stapling felt pads to pieces that later went into the racy and powerful Thunderbird. Workers assembled parts in an old industrial three-story building. When elevators broke, employees formed lines handing goods to one another and then down the steps to get them out the door in time. That early relationship helped Lott become essentially self-sustaining, enabling it to buy its own equipment and operate largely without subsidies from the state or federal government.
In 1993 Ford told Lott that if it wanted to continue doing business with the auto giant, it had to earn the highest quality certification, called Q1 -- just like the rest of its suppliers.
"There was going to be no more hand holding," recalls Ms. Little. Lott embarked on an intensive overhaul. It invested in new computers and training. It engineered special tables and hand-held tools for those in wheelchairs and with limited fine motor skills to help them attach clips and clamps to plastic fender and wheel parts.
Ford officials spent five days at its factory inspecting operations. Before leaving, they said Lott would be recommended for the prestigious Q1 award. "It was the greatest day of my life," says Ms. Little. Workers celebrated with an outing to the Toledo Zoo. All received blue Ford jackets.
Soon, Lott was shipping directly to Ford plants in Kentucky, Illinois and Michigan, with quality and on time ratings exceeding 99%, according to data compiled by Lott for Ford. It expanded to three production sites, with close to 300,000 square feet, and began assembling head rests and hoses for Jeep, GM, and Chrysler. By 2006, revenue reached $7 million, with Ford generating about 75%. The rest came from other car makers and non-auto assembling, packaging, recycling, and maintenance jobs.
Assembly-type work, tedious to others, was ideal for Lott employees, who thrived repeating and mastering a single activity. Taking ownership in their work, they asked to visit the Ford stamping plant to see where their parts fit onto vans and trucks and wore Ford baseball hats.
Stars like Patty Zawierucha emerged. Her specialty was belly pans and splash shields. "I loved them," says Ms. Zawierucha, 60, who has a learning disability. She preferred using her hands, now proudly calloused, instead of specially engineered tools because she could work faster that way. At times, her output was so far above average that supervisors suspected a data-entry error. Joe Murnen, chief operations officer, stood next to her and tried to match her numbers. "I tried but I just couldn't do it," he says.
Depending on the type of job, Lott workers are either paid minimum wage of $7.30 an hour or a piece rate, which is based on the competitive prevailing wage. With volumes currently down, that's translated into smaller paychecks for many Lott employees.
Michael Peters, 44, was dubbed Speedy Gonzales, "because I was so fast" adding clips, pins and foam strips to parts, he says. While working for Ford, he earned $800 and $900 every two weeks, which was enough to support his mother, Martha, in their home. "I was paying for all the household bills for me and my mom," says Mr. Peters, who wears a photo of his now-deceased mother, on a metal tag around his neck.
Mr. Peters's diligence, mirrored by many others, earned the respect of those around them. "A lot of regular guys in life think how to cheat and steal from the system," says Mike Walker, who supervises Mr. Peters and others. "These guys work hard."
Robert Ertle, the 30-year old who can't walk, is industrious by nature. In the evenings, antsy to get out of his wheelchair, he will crawl out to the garage to clean his mother's car.
"Lott is the best thing that ever happened to him," says his mother, Ms. Cleveland.
That sense of stability was shaken when Ford launched its Way Forward program in 2006. It was a much-needed restructuring aimed at saving billions by closing more than a dozen factories, including the Maumee stamping plant, which was Lott's major customer.
Ms. Little was devastated. "We worked so hard to get that business," says Ms. Little, noting that Lott workers would sometimes find problems with the auto parts and help resolve them.
"It was nothing that Lott did or didn't do. We were appreciative of the work they did and the dedication the employees showed," says Ford spokesman Todd Nissen.
Lott President Ms. Uhl Browne, a former consultant in higher education, was hired a few months before the Ford contract ended. "I knew it was going to happen, but knowing it and living are it are two different things," she says.
After losing the Ford work, Lott secured a GM contract and invested $100,000 in equipment. Lott anticipated the arrangement to last for three or four years -- enough time to warrant the capital investment. Instead, that work dried up by the end of 2008. A GM spokesman says it was never meant to be a long-term contract. Lott says the business went away faster than expected.
It obtained another auto-related contract for more than 20 small parts for a Honda supplier. Almost immediately, the expected volume began shrinking and was cut by more than 40%.
Meanwhile, Lott's other business took a hit from the financial crisis and recession. Paper mills wouldn't accept recycled paper because prices had tanked. Local companies that employed crews of Lott workers to clean or load boxes cancelled those contracts, or greatly reduced volume.
Revenues fell to $2.6 million, with a scant $100,000 trickling in from the auto-supply business. "And we really hustled to get that," says Jeff Holland, Lott's chief financial officer.
Even though contracts were dwindling, Lott employees continued coming to work, doing odd jobs like shredding paper and repairing wooden pallets. At first Lott tried to maintain their average biweekly pay of about $200 by tapping its investment reserves. But the fund was losing money. "We had to stop," says Ms. Uhl Browne. Workers receive only what they actually earned -- even if it was just $24 every two weeks.
The speedy Mr. Peters could no longer afford the $500 a month payments to stay in his house so he moved into an apartment. Lott contacted a social-service organization to help him and others pay their bills and manage their money.
Pockets of optimism remain. The "Cash for Clunkers" stimulus effort helped revive flagging volume at the Honda supplier. A few other contracts have come through in recent weeks. One involves sorting, labeling and stacking decorative panels on pallets for delivery to retailers like Lowe's. Another short-term stint labeling containers will occupy some workers for three to four months.
"We're keeping everyone busy but we're still losing money," says Ms. Uhl Browne. "We're not out of the woods."
I am near quadriplegic, a result of polio, and I cannot stand. I have limited strength in my arms, enough to function once I’m in my chair but not enough to get into or out of the chair.
To be able to live in my own apartment, as I desired, rather than in the custodial care of a nursing home, required the assistance of a rotating crew of attendants to transfer me from wheelchair to bed, bed to wheelchair, wheelchair to shower chair ... you get the idea. Ten to 20 minutes in the mornings and in the evenings usually did the trick. Otherwise I went about my business, which included working at an insurance agency. No warehousing for me, thank you.
The female attendants preferred to come in pairs, all the better to help a man into his bed, and there undress him. I am somewhat deferential in the company of women, and I had made a conscientious effort to avoid any touch, any word that might be construed as improper. With that the arrangement sailed along with no problems, soon settling into a job done and forgotten — at least until Belinda, a young mother of two boys, showed up as half my attendant team. She was working evenings to pay for her college education.
Earlier that day I had noticed that part of the assembly of my shower chair was loose. “Do you know how to use a socket wrench?” I asked Belinda.
“Sure,” she replied. “I was a tomboy. I helped my father all the time when I was a girl.”
She had a silky sheet of straight brunet hair pulled together at the nape of her delicate neck, exotic dark hazel eyes and a dancer’s lithe body. She may have grown up a tomboy, but what I saw was a beautiful woman.
“There’s a wrench set in the lower left drawer of my desk,” I said. “Get it, and I’ll show you how this thing goes back together.”
As the days went by, Belinda sometimes began taking her turn on my transfer schedule without a co-lifter.
“Doesn’t it bother you to come alone?” I asked.
“Why? I can outrun you.”
And with that the necessity of my transfer faded into the background, and we began to talk about other things: books and films, my work and hers. It seemed a natural evolution that after a few weeks Belinda’s routine occasionally included a friendly visit before she started her 3-to-11-p.m. shift.
One day she dropped by with her sons. “This is Matthew and Christopher,” she said.
The boys spoke up, even though Matthew, the younger, held tight to his mother’s skirt. It was evident she had told them about my wheelchair. Matt was all red hair and freckles, while Chris carried his mother’s brunet coloring.
And so it was that the man in a wheelchair, sardonic and standoffish, and the vibrant young woman who loved science and worried over how she would support her sons, developed an odd connection, a link to a place where hands might touch, but thoughts and feelings and emotions began to flicker like lightning beyond the horizon.
I was past 40, my anger and frustration over being paralyzed mostly burned away. But it never occurred to me that the friendship, the connection, between Belinda and me might also be the bridge between caution and passion, between isolation and connection.
“I really don’t see the chair,” Belinda said a few months after we met. “I see you.”
But I didn’t believe her then. I had been paralyzed too young, when I was too callow, and in a time and place where most people with disabilities were seen as invalids and shut-ins, passively accepting limitations and retreating behind an accepting smile to avoid injury, neglect, abuse or rejection.
Belinda was 26, beginning study for a master’s degree in microbiology, but she was also a single mother with minimal income. Nearly a decade had passed as she worked as a nurse’s aide to pay for her classes and for day care for her sons. And her life was becoming more hectic as she undertook graduate studies.
I did not know how to love, not then, but I knew how to be a friend. I tried to help her with her boys, getting them ready for the bus when she had an early appointment, watching them after school and seeing that homework was done and bellies filled.
One late summer day Belinda asked me to accompany her to the nearby university city. “I need a man’s opinion on what a professional woman should wear,” she said. The master’s program allowed her to supplement her income by working as a graduate teaching assistant. She was apprehensive about looking the part, and so we set out in my van.
On the way, as we passed a restored VW Beetle in the adjacent lane, she pointed to it and said, “One of these days, I’m going to find one of those and rebuild it.”
Only half-listening, I murmured, “If wishes were horses, beggars would ride.”
“What a mean thing to say,” she snapped, turning away.
She was driving my van; I sat behind her with my wheelchair secured by tie-downs. “I’m sorry,” I said automatically, but I didn’t understand what caused her reaction. The sardonic aphorism made perfect sense to me; I was an expert on wishes.
“People have a right to dream,” she said.
We were quiet as Belinda bought dresses. She liked floral prints. I liked a navy blue with tiny white polka dots. I bought lunch, and we drove to my apartment. As we waited for her boys’ school bus to arrive, she sat on my couch, still subdued, her legs tucked under her, dark hair cascading down the side of her face. She gazed out the front window at the row of cedar trees along the driveway.
“I really didn’t mean to hurt your feelings,” I said.
“It’s all right. I shouldn’t be so sensitive.” I could see her despair reflected in the slump of her shoulders.
I knew about despair. I wore it like a familiar coat, incapable of accepting what must be tolerated and petulantly ignoring what must be acknowledged. But at that moment — at the sight of such sadness in one usually so open and upbeat, sadness in the spirit of a woman who needed something from me — I wanted to offer more than mumbled words of apology. But I also knew that to push myself deeper into her world might carry us to a place where I might lose what I had made of myself, a place where I knew I could no longer hold tight to the hard reality that kept me sane.
I believed I did not deserve to love Belinda. I believed I should not allow her to love me. I held hard to the idea I should be content to ride out the remainder of my life without complaint, a burned-out case, an absurd hodgepodge of broken parts, a beggar who no longer wished for a horse. But she was also a woman, beautiful and vibrant, and I was a man — in a wheelchair, true — but a man full of heat and desire that sometimes rendered the chair irrelevant.
And I was the keeper of an obscene little secret I had known perhaps since I had been stuck in the iron lung, and surely from some vague moment later, the point where I realized I would never walk again. It is a thing that will sit rancid in my gut until the day I die, a thing that until then had eaten away at any illusion that love and marriage for me would be like it was in books or movies. And it was this: I would be physically dependent upon those who might love me. I am a chore, an obligation, and I will ever be so. I could not rationalize how a woman might love me and not soon come to hate the millstone I believed myself to be.
All this ricocheted through my mind — not in words but in a fog of melancholic unease — as I stared at Belinda. Suddenly, she moved from the couch and across the few steps between us. I opened my arms, and she dropped into my lap and put her head on my shoulder. There was no sound, no words between us, only her tears and my silent wonder.
Friends. Lovers. Perhaps that day was a hint that there might be a path through the thicket of my insecurities. I only remember the gift, the magic, the seamless transition from what I could never imagine into that which I will treasure until my last breath. A kiss. A touch. The sweet scent in the shadow of her neck.
“We should stop this, you know,” I said, my mouth against her hair. “You need to find someone else.”
“Where can I find a man silly enough to stay home with my boys when they have chickenpox?” she replied, smiling and lifting up to kiss the top of my head. “I like it that you put me first.”
There was that, I suppose, but it seemed only natural, given that she couldn’t miss her teaching assignment and I’d already had chickenpox as a child.
MONTHS later, Belinda stopped by my apartment and held out a small box. Inside was a man’s wedding ring, a wide band with oak leaves inlaid into its surface. “See if it fits,” she said.
We now approach two decades married, and I sometimes still wonder at what love has wrought. I sometimes think Belinda might see in me a thing to nurture, a place to sacrifice, an altar on which to offer love. But I also feel something else — that glow from two decades ago, that heat between a woman and her mate.
Cynics say romantic love is a fiction. I have been thoroughly in love only once, and I think it a mystery, an enigma, a Gordian knot entwining two spirits. But even now I cannot fully resolve myself to the reality of Belinda’s love. I chose to love Belinda, chose against my head-logic and with my heart-dreams. And even now, I confront the tasks with which she helps me each day with a mixture of the guilt and gratitude, resentment and appreciation, anger and bemusement.
And somewhere deep in my psyche an old ugly beggar sleeps, unaware that the man Belinda chose to love has gotten on his horse and ridden away.
NEW HAVEN, Conn. — Giving parents of autistic children specialized training helps children with severe behavior problems better than medication alone, according to a Yale professor.
“The conclusion is that for children with pervasive developmental disorders ... (they) will benefit from medication and parent training,” said Lawrence Scahill, professor at Yale School of Nursing and the Yale Child Study Center, a principal investigator.
The 24-week trial was conducted at Yale, Ohio State and Indiana universities. The results were published in the December issue of the Journal of the American Academy of Child and Adolescent Psychiatry.
Scahill said the focus of the study was children on the autism spectrum, age 4 to 13, who have “serious behavioral problems,” including “daily and prolonged tantrums, aggression and self-injury.”
“These behaviors may occur in response to normal expectations of everyday living, such as getting dressed, getting ready for bed or making transitions between one activity and another,” Scahill said.
Two groups of children on the autism spectrum were given the anti-psychotic medication risperidone (Risperdal).
The parents of the children in one group also were given the one-to-one training, including two home visits.
“Both groups improved, but over six months, the group that received parent training showed greater and more stable benefit,” Scahill said.
He said the training “entails 14 sessions, primarily involving the parent, in which the parent is taught to think differently about the child’s misbehavior and then to respond differently.”
Parents will sometimes reinforce negative behavior, Scahill said. For example, they may react to a tantrum over a child dressing himself by dressing him themselves.
Techniques include breaking the task into small parts to achieve success and avoiding the opportunity for conflicts when possible.
“The mother takes the child to Stop & Shop and then takes the child to another store and another store — by the third stop, the kid has had it,” he said.
The study was conducted by the National Institute of Mental Health Research Units on Pediatric Psychopharmacology. Results from a 2002 RUPP report showed most children’s symptoms returned when the medication was discontinued after six months.
Risperidone can bring on weight gain, which can lead to obesity and related health problems.
Further study will be needed to see how long the added benefit of the training lasts, Scahill said. “Our data go out six months ... It’s actually the last month or so that you start to see separation of the two graphs.”
Scahill said future research may involve preschool-age children to see if early intervention will make medication unnecessary.
Athletes at International Wheelchair and Amputee Sports World Games face inaccessible stadiums in India
BANGALORE, India -- Athletes participating in the International Wheelchair and Amputee Sports (IWAS) World Games here have expressed dissatisfaction over lack of facilities, including ramps, at the venue, Shree Kanteerava Stadium.
"The stadium has no ramps to support wheelchair-bound sportspersons like me. I am finding it hard to negotiate from one corner of the stadium to another," Pragya Ghildial, 26-year-old wheelchair-bound table tennis player, told IANS Nov. 25.
The Games were flagged off Tuesday and conclude Dec 1.
The stadium is also short on hygiene with dirty toilets.
"It seems everything is in a mess. The stadium is not at all disabled friendly. It is hard for us to enter cramped toilets. I wonder why the authorities have not taken measures to ensure basic facilities for the sportspersons at an international meet?" asks Nirmal Singh, 24, who has come to participate at wheelchair rugby.
The international sporting event has brought together 604 athletes from 43 countries participating in 11 disciplines: athletics, archery, sitting volleyball, table tennis, wheelchair rugby, badminton, golf, power lifting, wheelchair fencing, shooting and swimming.
The IWAS is an international sports organisation that governs sports for wheelchair-bound people and amputees. IWAS World Games is held every two years. The event here has been organised by IWAS in association Paralympic Committee of India (PCI).
Sportspersons are also fuming at the delay in arrival of vehicles to ferry them from their hotel to the stadium.
"It's unimaginable for us to get into vehicles which do not have low floor. We have to struggle hard to get inside a car," rued a Brazilian player who does not wish to be named.
The chaos on Bangalore's roads adds to the problem.
"City roads are too chaotic for us to venture out on our own," he said.
The organising committee, however, dismissed the problems as "hiccups" that could not be avoided as it was for the first time India was hosting an international event for disabled sportspersons.
"We are trying to do our best with available infrastructure. Hope the event will be a learning experience for us in future events. Moreover, PCI is a body formed only four years ago," said a PCI official.
When Ellie May Challis (pictured) lost her arms and legs to meningitis, hundreds of well-wishers from across the country donated money to a fund set up in her name in order to help her.
The five-year-old's grateful parents, overwhelmed by the generosity of the public, turned to a relative they trusted to safeguard every penny - her uncle, banker Darren Pease.
However, the Lloyds TSB risk manager, 33, plundered more than £315,000 from the account over three years, spending money on jewellery and holidays to save his failing marriage, a court heard.
The father of two has now been jailed for four years. He turned himself in to police in June after the family discovered there was just £239 left in the fund.
He had also taken £65,000 from the life savings of his grandmother, Joyce Pease, who lives in sheltered accommodation, a court heard.
Pease, from Romford in Essex, pleaded guilty to 18 counts of committing fraud while in a position of trust and obtaining property by deception. Another 31 offences were taken into consideration.
Sentencing him, Judge Ian Graham described the crimes as a 'repugnant' breach of the trust of his family and all the well-wishers who donated money to help make Ellie May's life more comfortable.
'The fact that you have then moved on to your own grandmother is almost like the punchline from some gruesome joke,' he told Pease at Basildon Crown Court.
Pease learned how to carry out the scam as part of fraud training at work, his former wife told the Daily Mail yesterday. He allegedly 'scanned' signatures of a second trustee on to cheques so he could cash them.
'He was putting them on to the cheques because they needed two signatures,' explained Jacqueline, 38.
'Because he worked for the fraud team in the bank they had to teach staff how to commit fraud in order to teach them how to recognise it. It was by doing the banking training he was able to steal from them. I believe that's why they (Lloyds) have paid the money back to Ellie.'
Breaking down in tears, she added it was still unclear what he had spent the vast bulk of the money on.
'He's ruined us, absolutely ruined us. Four years just isn't long enough for what he has done to us all,' she added. 'He's betrayed so many people. Fortunately, we're a strong family, otherwise this would have broken me and the children completely.
'He made out in court that he spent the money on holidays, things for the house and other "bits and pieces" to try and keep his marriage happy. I didn't realise it wasn't.
'For all I know, he could have the money stashed somewhere for when he comes out. Me and the children are now going to be made homeless because of what he has done.'
Lloyds TSB, which held the fund for Ellie May, had repaid the stolen money into the account, she explained, but now plans to repossess the family home.
Speaking last night, Ellie May's mother, Lisa, said her brother-in-law deserved longer in prison as his stealing meant she could not buy her daughter a motorised wheelchair for a beach trip.
'This man robbed my little girl's legs,' said the 36-year-old from Clacton, Essex. 'She was devastated when she could not go on the sand with the other kids.
'She adored Darren. We've tried to shelter her from what has happened but she has overheard conversations and this morning she said to me, "Is Uncle Darren going to prison for stealing my money?"'.
A spokesman for Lloyds TSB would not comment on the case but it is believed Pease has been sacked.
Ellie May, who lives with parents Paul and Lisa and her three siblings, was just 16 months old when she was taken to hospital with meningitis. Doctors battled to save her life as septicaemia caused her system to shut down, stopping the blood flow to her legs.
Six weeks later, she underwent a six-hour operation to amputate her arms and legs.
Originally fitted with unsuitable NHS legs, her family raised £20,000 from donations to buy her private ones and last year she was able to walk to her first day at school.
The Montgomery County Council in Maryland gave unanimous approval Nov. 24 to giving preference to disabled job seekers over similarly skilled people who aren't disabled.
Council members said they were "stepping up to implement some of the most progressive policies in the nation" in response to the high unemployment rate among the county's disabled. About 10 percent of county residents identify themselves as disabled, while only 54 percent of them are employed, according to a 2006 survey.
"It's a staggering waste of human talent," said Council President Phil Andrews.
The County Council voted to establish a "hiring preference" to disabled people who go through the county's traditional job application process. The council's attorney is now drafting a formal bill that is set to be introduced next week and is expected to pass soon.
Disability-rights advocates praised the council for supporting a change in policy, and pointed out that more than 40 percent of the county's disabled live in poverty.
"We need these initiatives," said Mark Maxin, chairman of the county's Commission on People with Disabilities.
In addition to implementing a hiring preference during the typically competitive hiring process, some County Council members voiced their approval for giving county managers the ability to bypass the typical hiring process altogether to hire a qualified disabled candidates.
Giving managers that power would require that county voters approve a change to the county's charter. The county considered a similar proposal in 1994 but dropped the idea after the county attorney said it would require an amendment to the county's charter, according to a county report.
The County Council referred the matter to the county's Charter Review Commission on Tuesday.
No one spoke out Nov. 24 at the council meeting against the proposals. But, Betsy Luecking, a county disability policy specialist, told The Examiner in October that the disabled community is split over whether they need advantages in the hiring process.
"I would think most people would prefer to think that they were hired because they were the most qualified person," Luecking said.
Park Jin-yeong (pictured), a disabled worker at the Yongin District Tax Office in Gyeonggi, received an award in this year’s public servant contest hosted by the Ministry of Public Administration and Security. He was recognized for obtaining nine local and international qualification certificates in taxation and finance despite his physical disability.
Over 1,500 public service workers entered the contest. Park was the only disabled worker among 94 winners.
It’s been a long and hard road for the 38-year-old.
Park’s life turned upside down when a broken neck from a swimming pool accident 19 years ago left him a quadriplegic. At first, Park couldn’t shake the feeling that he had been dealt a bum hand. Though his mother dutifully massaged his legs, there was to be no miracle. He is confined to a wheelchair and can only use his little finger on his left hand and forefinger on his right hand.
“I wanted to kill myself, but I couldn’t even do that because I couldn’t move,” Park said. When college admission season approached, Park looked for a college where he could maneuver his wheelchair. He chose the National Tax College. Fresh out of college Park became a tax worker at a northern Incheon tax office in 1993. But Korea was not ready to accept disabled staff, Park recalled.
The only place where he could freely move his wheelchair was the first floor of the office. Because of that, he was assigned to work at an ombudsman desk.
“I didn’t even have the chance to take on larger tasks because my co-workers and my boss avoided giving me work since I was disabled,” Park said. “When I complained about the unfair treatment, they gave me two reasons. One, I lacked experience, and two, I didn’t have certificates related to taxation and finance.”
Even if the accident limited him physically, Park kept reminding himself that he would not take a backseat to anyone. After work, Park hit the books until late night and his supportive wife, Lee Yeong-ah, 40, stayed awake to help him get into bed.
Lee also helps Park dress.
“The only thing that was hard to bear was that I couldn’t watch TV because I didn’t want to interrupt my husband’s study,” Lee said.
Park’s efforts bore fruit in 2005 when he successfully obtained a certificate as a computer audit specialist.
“If you don’t have the will to handle matters, no one will to turn to you for help,” Park said.
“I kept telling myself, ‘I want to do this and I can do this.’ That actually empowered me to have the power to seize good opportunities and meet good people. My studies will last forever and improve my family’s happiness."
Belgian man who was wrongly diagnosed as comatose in 1983 reveals he is concious once he receives a commuication device
LONDON, U.K. -- A Belgian car crash patient misdiagnosed as fully comatose in 1983 was finally able to prove he was actually conscious but unable to talk the past 23 years by answering a UK television interview through a special keyboard on Nov. 23.
Wheelchair-bound Rom Houben, now 46, answered interview questions from ITV by typing on a special keyboard with the help of a carer. He said he was "terribly lonely" throughout the 23 years he was unable to talk to his family.
Houben also told German magazine Der Spiegel that the discovery of his real condition was his "second birth."
Doctors at a Belgian hospital wrongly diagnosed Houben as in vegetative state or could not feel nor hear because they did not know he was actually paralyzed. But a University of Liege doctor who tested him three years ago using modern brain scanning technology found out his real condition.
Dr. Steven Laureys and Dr. Caroline Schnakers used the JFK Coma Recovery Scale-Revised (CRS-R), which tests a patients' verbalization, communication, motor and visual functions, and response to sound. The test is more sensitive than the Glasgow Coma Scale used on Houben.
The two doctors' research was published in the journal BMC Neurology early this year exposing Houben's case. Laureys described Houben's ordeal as "horrible" because he was really fully conscious but could not communicate.
Kaleb Drew, a first-grader with autism with severe speech and developmental delays in central Illinois, recently received some good news from a county judge: His best friend, Chewey, a 70-pound yellow Labrador retriever, who has been his constant companion in school since August, would be allowed to continue to accompany him to school every day.
Chewey is an autism service dog trained by Autism Service Dogs of America, an organization outside of Portland, Ore., that prepares dogs to live with children who have autism. The dogs are trained to increase the child's mobility and socialization and to provide a calming influence that allows the child to make greater academic progress in school.
For Kaleb, Chewey is his lifeline and his guardian angel, says his mom, Nichelle. After receiving the dog last spring, Kaleb has had fewer emotional outbursts, he is better able to focus and transition from one activity to another during class, and he does not try to run away from people—which has in the past resulted in dangerous situations in the school parking lot—since Chewey is tethered to him and acts as a physical restraint. However, if the Villa Grove school district had its way, Kaleb would have to do without Chewey at school. District officials argued in court earlier this month that the dog is not a true service animal and does not perform tasks that benefit Kaleb academically.
Margie Wakelin, an attorney who works with the Chicago-based Equip for Equality and who represented the Drew family, says that service animals are becoming more common as more is learned about the benefits that they can offer in assisting people with a range of mental disabilities—not just autism. "The animals allow the person to better segue into relating with other people," she says.
When dealing with service animals, a common concern raised by school districts is balancing the needs of the student with autism with other children who might have allergies or fear the dog. But experts say that keeping the dogs clean and adjusting class and recess schedules can usually quell any allergy issues, and once other children see that the service animal is very calm and predictable, they welcome the dog wholeheartedly.
Still, Wakelin admits that not many people know the proper etiquette for being around service animals, and it's important for families to listen to the concerns school officials have and to think creatively about how to solve them. Though many states, like Illinois, have laws that allow service animals to be used in schools, that doesn't mean there won't be hiccups along the way.
Fortunately, if you're a parent thinking about using a service animal for your child, there is plenty of guidance on the best ways to maximize your chances of reaching a mutual agreement with the district without resorting to a lawsuit. Advice on the legal aspects of service animals can be found on the Psychiatric Service Dog Society's website.
And when it comes time to find a service animal, you'll want to ask for advice: "In choosing a training organization, talk to all the people around you, especially other parents who have been in similar situations," says Nichelle Drew. "But no matter what anybody else tells you, remember that you know your child the best."
Priscilla Taylor, the founder and executive director at ASDA, says there are many agencies around the country that train dogs to assist people with disabilities that include schizophrenia, agoraphobia (fear of open or public places), and dissociative identity disorder (characterized by conflicting states of mind), but few that specialize in autism. The cost of the dogs, which must undergo years of training and tests before they can go home with a family, can range from free (if the organization is supported by wealthy donors) to $30,000. The Drew family used community fundraising to pay for Chewey, who cost $13,500. Some other training agencies include 4 Paws for Ability in Ohio and Canine Companions for Independence in California.
For Kaleb, Chewey has been a lifesaver, plain and simple, says Nichelle Drew, and he's given Kaleb the opportunity to interact more with his classmates. "I think the other students are all learning a very neat lesson that not many people out there get to learn," she says.