Wednesday, August 31, 2011

"Medusa’s Mirror: Fears, Spells and Other Transfixed Positions" exhibition features eight artists creating work addressing the disabled body

From Pro Arts. Pictured is Laura Swanson's "Peggy Lee," 2008.

Medusa’s Mirror
Fears, Spells and Other Transfixed Positions
Curated by Amanda Cachia

September 13 – October 20, 2011
Reception: Thursday, September 15, 6–8 pm
Guided Tour by Carmen Papalia: Wednesday, September 21, 2 - 4 pm
Artists’ Talk: Friday, October 7, 6–8 pm

OAKLAND, Calif. -- Pro Arts presents Medusa’s Mirror: Fears, Spells and Other Transfixed Positions, a new exhibition curated by Amanda Cachia. The exhibition features eight artists creating work addressing the disabled body. Selected artists include Joseph Grigely, Neil Marcus, Carmen Papalia, Katherine Sherwood, Laura Swanson, Sunaura Taylor, Sadie Wilcox and Chun-Shan (Sandie) Yi. The exhibition is on view September 13 – October 20, 2011 at Pro Arts’ gallery in downtown Oakland. An Artists’ Reception is scheduled on Thursday, September 15, 6 – 8 pm. The Artists’ Talk will take place on Friday, October 7, 6 – 8 PM. Exhibition and events are free and open to the public.

In Greek mythology, Medusa was viewed as a monster, and gazing directly upon her would turn onlookers into stone. Inspired by this myth, the artists in Medusa’s Mirror address the able-bodied gaze upon the disabled subject - often viewed with fear, curiosity or wonder - by turning the gaze upon the viewer. This shift allows the disabled subject to claim agency and gives cause for the able-bodied viewer to reflect on their own frameworks. The piercing gaze as interpreted through medicine are explored in Katherine Sherwood’s mixed media paintings and Sadie Wilcox’s examinations of the roles of patient, caregiver and doctor. The medicinal gaze is further skewed into the world of the sideshow in the work of Sunaura Taylor, articulating the point of tension in the gaze.

Several works draw from the ruptures between the able-bodied and the disabled. Deaf artist Joseph Grigely’s explores the ruptures and failures of communication, pointing to the rift between spoken and signed language. Blind artist Carmen Papalia’s guided walking tours leads the closed-eyes participants to experience the world using their other senses - primarily sound and touch. Visual representations of the body and our relationship toward body image are thoughtfully explored in Chun-Shan (Sandie) Yi’s latex sculptures and in the discomfort reflected in Laura Swanson’s photographs. The body is further addressed in Neil Marcus’ drawings, an extension of his performance practice, which grapples with mobility and movement as one with dsytonia. The works in Medusa’s Mirror bring to light the able-bodied gaze upon the disabled subject and in turn point to the vulnerabilities and fragilities commonplace with all human beings.

Medusa’s Mirror is curated by Amanda Cachia, The exhibition is part of Pro Arts’ annual open call for exhibition proposals. Pro Arts’ visual arts programming is supported by the National Endowment for the Arts, California Arts Council, and The Andy Warhol Foundation for the Visual Arts.

About Pro Arts
Pro Arts supports the arts within communities by serving the ongoing needs of artists. This Oakland-based arts organization provides critical access to contemporary art in the region and serves as a regional hub for arts activities, independent curated exhibitions, advocacy, and capacity-building artist services. Pro Arts’ visual arts programming showcases the best new work made in the Oakland/Bay Area, including cutting-edge, risk-taking contemporary art, and important works by artists representing under-served populations and communities of color, and working artists. Pro Arts provides fiscal sponsorship to artists and professional services matching artists with community partners. Additionally, Pro Arts’ Youth Fellows program integrates arts education, exhibitions, arts training, and youth development. Last year Pro Arts exhibited 690 artists and produced 62 events drawing an annual audience of 72,000.

For more information, please contact:
Jackie Im, Interim Exhibitions and Programs Coordinator - or 510.763.4361

British Paralympian basketball star turned TV presenter, Ade Adepitan, says Paralympics closer to Olympian ideal

From City the UK:

Ade Adepitan, the wheelchair basketball star turned TV presenter, (pictured) has a blunt, two-pronged response to those who still question the merits of Paralympic sport. “One, go and watch it, and two, meet me on any tennis court, basketball court or track and I will kick your ass.”

Bullishness like that might have seemed misplaced a decade or so ago, but interest in parasport is soaring and the London 2012 Paralympics – now just a year away – will be the biggest yet. For Adepitan, who won bronze in 2004 but no longer competes, it is another step towards recognition of Paralympians as athletes every bit as dedicated and outstanding as their able-bodied counterparts.

“The crux of it is: we want respect,” he says. “From people respecting Paralympians as athletes, then you will get the next step, which is respecting disabled people as people.”

Far from being the Olympics’ poorer relative, as it has traditionally been treated, Adepitan makes a convincing case for the Paralympics being “a purer passion” and, in that sense, truer to the original ethos of the Games. “These guys work hard, just as hard as their Olympic counterparts – and for less reward. We know we’re not going to become millionaires from our sport. It’s about being the best you can.”

Adepitan (right) has a pretty good backstory himself. Born in Nigeria, he survived polio but lost the use of his left leg before moving to England aged three and settling in Newham. His basketball wizardry earned him a place at Sydney in 2000 and he found fame in Athens four years later in the Great Britain team that scooped bronze. That, and his charisma, led to media work, including a famous BBC ident, and he now boasts a lengthy CV of presenting credits, including fronting Channel 4’s That Paralympics Show.

Highlights abound, but Adepitan cites his role as a bid ambassador in helping to bring the Games to east London as one of his proudest achievements. Amid cynicism in some quarters about a fruitful legacy, he is a passionate believer that 2012 can make a profound difference to his formative boroughs.

“All the riots and the problems we’ve had in London – I think sport can be a great answer to that. When you grow up in an area where there isn’t much financial support and you think the rest of the world doesn’t care, you can do bad things. But sport was such a positive light and you can get that message across even better through the Paralympics. It’s a purer ethic.”

Adepitan, now 37, will be presenting next year’s Games on Channel 4, who have taken the rights from the BBC and are intent on launching the Paralympics into the mainstream. But he might have been competing, had the boom in interest come along earlier and dissuaded him from pursuing a more sustainable career.

“I am bloody jealous! I wish things were different. If Channel 4 had come along and covered the 2004 Paralympics I would most certainly be taking part at London 2012.”

Ade Adepitan presents ‘That Paralympic Show’ with Rick Edwards and Iwan Thomas on Channel 4, the official broadcaster of the London 2012 Paralympic Games. The new series of ‘That Paralympic Show’ returns on Saturday lunchtimes at 1.25pm from 3 September.

Tuesday, August 30, 2011

In Sierra Leone, stigma toughest fight for those with epilepsy

From The NY Times. In the picture, a mother at an epilepsy clinic attends her son, who has had a severe seizure.

FREETOWN, Sierra Leone — On a sweltering morning on a red-earth lane a few blocks from the largest mosque in this West African capital, Jeneba Kabba stands up.

A tall, striking woman with a serious manner, Mrs. Kabba has been sitting under an awning in the outdoor classroom of a vocational training program for people with epilepsy. Every weekday, some 20 Sierra Leoneans, from teenagers to adults in middle age, gather here to learn skills like tailoring, weaving, tie-dyeing and soap-making, as well as reading — skills that, in this society, will give them a chance to earn a living. Mrs. Kabba, 30, a graduate of the program, is now a tutor.

Her composure belies what she has survived. As a teenager she was taken to a traditional healer, who boiled herbs and made her inhale the fumes from a steam tent for hours. The treatment was supposed to drive out the demons thought to cause epilepsy; she nearly fainted and could have been burned.

But worse was yet to come: She was forced to drink a two-liter bottle of kerosene. “Mi ches don cook,” she says in the Krio language, her voice faltering even now: “My chest started to boil.” Only a panicked trip to the hospital saved her life.

Mrs. Kabba not only survived, but has been seizure-free for 10 years with the help of phenobarbital, one of the oldest anti-epileptic drugs and virtually the only one available here. And in a country where people with epilepsy are often considered uneducable, unemployable and unmarriageable, Mrs. Kabba teaches, is happily married and has a child.

Now, recalling the personal and professional distance that she has traveled, she rises to her feet. “People used to think I was crazy,” Mrs. Kabba says, her voice shaking. “Now they’re seeking me out; I’m the one that they want. Now, when I teach here, unless I tell you that I have epilepsy, you wouldn’t know. I’m proud of myself.”

Among Sierra Leoneans with epilepsy, Mrs. Kabba and her students are the lucky few, their successes due to the efforts of two tiny groups of advocates.

The Epilepsy Association of Sierra Leone opened this vocational training program 11 years ago, near the end of a devastating decade-long civil war. Now it has been joined by Dr. Radcliffe Durodami Lisk, a Sierra Leonean neurologist trained in Britain, who returned to Freetown last year to open the Epilepsy Project, offering clinics in the city and “upline,” in the remote eastern and southern provinces. In this nation of six million people, Dr. Lisk is the only neurologist.

The vocational program replaces the opportunities that its students have lost, one after another: Their schools have asked them to leave; their employers have fired them for having had a seizure in the workplace; their spouses and families often shun them for fear that they are contagious, or possessed.

And they live here, in one of Africa’s poorest countries, where scarce health care resources and the stigma surrounding epilepsy add up to a “treatment gap” of more than 90 percent — meaning that fewer than 10 percent of the estimated 60,000 to 100,000 Sierra Leoneans with epilepsy are getting the treatment they need.

Looking at the array of public-health problems facing many African societies, it is easy to wonder how a disease like epilepsy even makes its way onto the radar. “There is growing appreciation for the importance of noncommunicable chronic diseases in these regions,” said Dr. Gretchen Birbeck, a global epilepsy expert who directs a clinic outside Lusaka, the capital of Zambia. “But the focus where it counts — policy and money — is still on H.I.V./AIDS, tuberculosis and malaria.”

Yet epilepsy affects 50 million people worldwide, and according to the World Health Organization, nearly 90 percent of people with epilepsy live in developing countries. In Sierra Leone, Dr. Lisk said, “certain situations increase our prevalence: infectious diseases, childhood asphyxias, injuries from the rebel war, head trauma.”

Epilepsy treatment gaps are driven largely by low income and rural location, making sub-Saharan Africa a treatment-gap hot spot. Treatment in Sierra Leone is not expensive; Dr. Lisk’s patients pay about $2 a month for phenobarbital, which gives more than 60 percent of users significant seizure control. The costs of untreated epilepsy, on the other hand, are enormous, especially in lost productivity.

“People with epilepsy here become disproportionately disadvantaged in the job market,” said Max Bangura, founder of the Epilepsy Association of Sierra Leone and its vocational program. “With this training, people now know our students as excellent tailors; they are useful in their communities.”

While Dr. Lisk and Mr. Bangura fight a shortage of resources, they say their most intractable problem is still the intense stigma surrounding epilepsy, which often acts as a bar to treatment. “The first hurdle is whether or not the family believes that this is an illness that can be treated,” Dr. Lisk said.

Stigma here is based on two myths: that epilepsy is contagious and that it is caused by demonic possession. Dr. Lisk is quick to point out that beliefs about possession traverse societal boundaries. “You think it relates to level of education, of literacy, but somehow it doesn’t,” he said. “Sometimes it’s the most educated people who will tell you that it’s demonic. They say it’s in the Bible.” (Some biblical references to possession have long been thought to describe people with epilepsy.)

As a result, discrimination against people with epilepsy here is blatant and unabashed, and it begins in elementary school. “The school authorities often ask the students with epilepsy to leave,” Mr. Bangura said. “There is the notion that epilepsy is contagious; so when somebody has an attack during school, the perception is that if somebody happens to step on the spittle of an affected student, that would be one way of contracting the disease.”

Nearly half of Sierra Leonean children with epilepsy drop out of school once their condition is discovered. Teachers are often unwilling to help a child having a seizure in class.

“Wherever the kid fell, they circle it and tell people to stay away from it, because that spot is a bad spot,” said Lima Kanu, a graduate of the vocational training program who is now in charge of tailoring instruction.

A young woman in the program tells of being thrown out of school after having a seizure in class. Accepted into a new school, she stayed for three years but ultimately left. “It was my decision,” she says. “I was ashamed.”

And in some cases, parents keep their children out of school. “They know the shame epilepsy might mean to their family, so they prefer that their children not go,” Mr. Bangura said.

The situation is no better in the workplace, even for professionals. One woman in the vocational training program lost her civil service job in the country’s Ministry of Works the first time she had a seizure at the office.

Against this backdrop, anticonvulsive medications become a shield against discrimination, since they can prevent a person’s epilepsy from becoming known.

“People who would never have touched these students now come and say, ‘Please, can you do this handiwork for me?’ ” said Assanatu Blessing Turay, an administrator at the vocational training program. “Now they interact.”

Finding medication is often a battle. “When you have epilepsy and you go to the hospital here, they say, ‘We don’t have medicine for that,’ so people are forced to go to traditional healers,” Mr. Bangura said. These patients are often at risk of burns or other injuries, as Mrs. Kabba was; some male healers sexually abuse teenage girls with epilepsy, claiming that sex is a way to drive out demons.

But Dr. Lisk’s clinics are starting to make a difference. “A lot of the doctors — and it’s not only in this country, but generally — they really don’t know how to deal with epilepsy,” he said. “They’re happy that there’s somewhere patients can be referred now.”

Another problem is getting patients to stay on their medication. “People expect instant response,” Dr. Lisk said. “If you give the medication and two or three weeks later they have a seizure, they think, ‘No, it’s not working.’ And then it’s the ‘I told you so’ from the relatives — and they stop.”

As with everything in Sierra Leone, cost is a deciding factor. Dr. Lisk’s program makes phenobarbital available for about $2 a month regardless of how many times a day a patient takes it. Even so, Mr. Bangura said, many patients say they cannot afford it.

In the developed world, epilepsy care involves brain imaging. Sierra Leone has one electroencephalogram machine (thanks in part to Medical Assistance Sierra Leone, a British charity), one CT scanner and no M.R.I. machines. More complex epilepsy treatments like neurosurgery are unheard of.

Yet Dr. Birbeck, in Zambia, said such high technology was “not needed to have a public health impact on epilepsy” and added, “You have to have a different approach.”

That, she says, includes the priorities that she and Dr. Lisk have set in their own programs: raising awareness that epilepsy is a medical condition that can be treated; having a functioning health care system with facilities patients can reach; training health workers in epilepsy care; and offering anticonvulsive medicine at low or no cost.

Mr. Bangura and Dr. Lisk aim to expand their efforts. The Epilepsy Association wants to open 10 more vocational training programs; Dr. Lisk is trying to integrate epilepsy care into Sierra Leone’s health care system.

“We hold almost all of our clinics within Ministry of Health facilities, and we also train the staff,” he said. “Because we have one eye on the future: These are the people who have to be able to take over.”

But he added: “We need to have enough trained personnel — more than one neurologist, epilepsy nurses, trained community health officers. We need to do what we are doing 10 times over.”

And ultimately, all efforts come back to dispelling the stigma that still clings to epilepsy here.

“Epilepsy is just a sickness,” said Mrs. Kabba, the vocational tutor. “If your child got a sickness, you wouldn’t just let them down. Look after them. Take great care of them.”

Rwanda makes gains in all-inclusive education, schools open up to pupils with disabilities

From The Guardian in the UK:

Claude Uwihanganye, 12, (pictured) lives in Muhanga district in the southern province of Rwanda, a hilly area west of the capital, Kigali. Claude had polio as a small child and until recently did not go to school. It wasn't the hills that stopped Claude from joining local children in class, but an uphill struggle of a different kind.

In Rwanda, children with disabilities typically face discrimination and are excluded from school and community life. Silas Ngayaboshya, a local programme manager for Handicap International (HI), says that "many families hide their kids at home because having a disability is a shameful thing for the child and the family, as it's considered to be a punishment from God".

Rwanda's ministry of education says that 10% of young people have disabilities, while the Education for All (EFA) Global Monitoring Report 2010 concludes that the number of disabled children at school is likely to be small. A few attend their local mainstream school, though most go to special schools and centres in urban areas, too far for most Rwandans and mainly for children with visual or hearing impairments.

Despite these shortcomings, Rwanda's education system overall is considered to be one of the most progressive in Africa. The government recently introduced free compulsory education for the first nine years of school for all Rwandan children (this initiative is expected to increase to 12 years from next year). According to Unicef, Rwanda now has one of the highest primary school enrolment rates in Africa (95% of boys and 97% of girls in 2009).

Awareness about the rights of children with special needs to participate in their communities, or perhaps a lack of special schools in rural areas, has led to a "child-friendly" schools programme that aims to include all educationally vulnerable children in mainstream schools.

Currently, the ministry of education and Unicef fund 54 "child-friendly" schools across Rwanda, which also provide "best-practice" examples to other schools in their cluster areas. A 2009 Unicef report on the initiative indicates that they have assisted 7,500 disabled children. The government is aiming to expand the programme to 400 schools nationwide by 2012, and has also adopted it as the basic standard for all Rwanda's primary schools.

HI is prominent among the NGOs that manage the programme. It aims to increase the number of disabled children attending mainstream schools by linking schools with special centres for disabled children. HI works with local education authorities, families, disabled children and their non-disabled peers and local communities, and engages in awareness-raising. It locates not-at-school disabled children, provides teacher training, improves accessibility and infrastructure, and develops inclusive education policies at governmental level.

With the support of HI, Claude was able to join the neighbourhood children at Kabgayi primary school. At first Claude was unable to walk to school and was ill-prepared for classroom life. But after intensive physiotherapy and some basic education he became more independent and was ready for school.

Ngayaboshya, who worked with Claude, says that his inclusion plan also involved preparing the teachers and the other children at his school through measures such as pinning up Claude's picture in the classroom, talking in class about how disability can occur, inviting the class to contribute ideas that could help to include him, and encouraging Claude's father to visit the school and show teachers simple measures to assist his son.

It took weeks to integrate Claude into school life, but he now gets good grades and is making friends. And he walks over a kilometre every day on his crutches to go to school. Although it is a long way he doesn't mind the journey, and is excited about the classroom.

Ngayaboshya says that, from 2007 to the present, HI has supported almost 4,000 children to attend mainstream education in 78 schools. "It's very, very amazing", says Ngayaboshya, when talking about Rwanda's uptake of children with disabilities in local schools. "It shows how open to new ideas our people can be."

Dr Evariste Karangwa, a leading educator and dean of the School for Postgraduate Studies and Research at the Kigali Institute of Education (KIE), says there have been "encouraging transformations" in both special and regular schools over the last five years. "But," adds Karangwa, who also founded the department of Special Needs Education at KIE through which all rookie teachers in Rwanda now gain some training in inclusive education and meeting the needs of children with disabilities, "this doesn't mean it's all OK. I'm not happy with the rate of change: a big number of children with a disability don't go to school, while many who do go don't achieve or drop out".

Karangwa estimates that 54 primary schools out of the total across Rwanda can be described as "good".

Undoubtedly there are complex challenges for disabled learners in Rwanda. These include the lack of awareness among families that children with disabilities can attend school; poverty (poor families might need their children to support them with looking after animals, fetching water or firewood); the effects of the genocide in 1994, including the massacre of thousands of teachers that has reduced their numbers (the pupil-teacher ratio in Rwanda is as high as 60:1 according to HI); and the burden placed on resources by a curriculum shift from French to English as the official language of instruction.

However, the biggest challenge continues to be the stigma that society attaches to people with disabilities. Karangwa says: "The only way forward is to change the mindset of the decision-makers – the teachers, parents, community and policymakers – and this hasn't happened in a big way yet. Until attitudes about these kids change, there won't be enough political and community will to put enough investment for the specialised aids and equipment and training of teachers that children with special needs require to learn."

While there is still work to do, there is no doubt that the strategies being implemented now are making a difference to a growing number of disabled learners and their families.

Claude's father Joseph, who understands that for families such as his any hope of breaking out of poverty lies in education, says: "Parents with disabled children, who are stuck at home … must be strong and take them to centres. My child was really suffering and now it is totally different."

Special trays designed by Michigan college students help students with disabilities tote their stuff

From the Grand Rapids Press:

GRAND RAPIDS, Mich. — At 5 years old, Dakota Tomac wants to do things himself. He doesn’t want his cerebral palsy to require others to carry his book or figure out how he will get his lunch on the table.

His independent spirit got a boost with a tool created by Grand Valley State University students, thanks to an idea from a physical therapist at the Kent Intermediate School District.

The students made a tray that fits onto Dakota’s walker so he could move around at school and carry his iPad, which helps him communicate.

“It’s so nice he doesn’t have to depend on someone else to bring his words with him,” said Dakota’s mother, Angel Tomac. “Without the tray, his aids would follow him with the pad. And then maybe there would be no place to set it. He feels more independent now.”

KISD physical therapist Michelle Gallery asked GVSU’s engineering department about designing the tray, to hold not only an iPad, but his lunch or anything else he might want to take from here to there while his hands are pushing the walker.

John Farris, associate professor of engineering, turned the request into a learning project for students.

“We were thrilled to get students working with real clients,” Farris said.
For Adam DeVries, creating prototypes and ending up with a finished product was a senior project this past year, before he graduated with a mechanical engineering degree.

“The goal was a universal design to fit any walker and to do it at a low cost because medical devices can be pretty expensive,” DeVries said.

He was satisfied with the clear acrylic tray that can slant or lay flat, with pockets and a cup holder on the side.

Alex Filush, a junior at GVSU, worked on issues with fitting the tray onto walkers of many designs.

“It was a good experience to see the process of going back and forth with the client and getting feedback,” he said. “Then it turned out to be a useful tool for Dakota in everyday life.”

Mia Ernest, 5, (pictured) will also use the tray as she starts kindergarten this year.

“It’s already helped with her posture,” said Mia’s mother, Sarah Ernest.

The tray gets Mia to safely walk upright as she uses an iPad or looks at a book. It also means she does not have to find a table or chair to use things that require her hands.

Gallery said the trays will help students with disabilities to focus more on education and the social aspects of school, rather than the logistics of moving around.

Farris said the tray could turn into a commercial product to help students with disabilities everywhere.

“I envision shepherding that along because of the demonstrated demand,” he said.

Eyeborg Project leader looks at future of prosthetics, implants

From MedGadget:

The Eyeborg Project, a collaboration between Rob Spence, a filmmaker who lost his right eye in an accident, and Kosta Grammatis, an unemployed engineer, combines biomedical engineering and art in a device that not only seeks to revolutionize ocular prostheses, but also will record the world in a perspective never seen before.

The Eyeborg is a prosthetic eye equipped with a tiny video camera. It isn’t meant to replace Rob’s vision like a retinal prosthesis, but allows him to “lifecast” the world around him to the public.

As a filmmaker and an inventor whose innovative device falls at the intersection of biomedical sciences and art, Rob was approached by video game producer Square Enix to help promote their upcoming game, Deus Ex: Human Revolution.

In the game, Adam, the main character, has been equipped with various prostheses, implants, and other futuristic biomedical technology to make him a superior fighter.

Rob has produced a short documentary that explores just how far biomedical engineering is from the futuristic technology presented in the video game.

Blind Vietnam veteran guides others through life's challenges

From The Columbian in Vancouver, Wash.:

PORTLAND — After Urban Miyares (pictured) spent two days in a body bag in Vietnam, life could only get better.

It did.

The Army veteran calls the 1968 firefight something that “saved my life,” even though he’s dealt with blindness, a kidney transplant, diabetes, mobility problems and post-traumatic stress syndrome in the last 43 years.

He’s dealt with those issues in a lot of ways. The San Diego resident helps other disabled veterans set up businesses, has set speed records in competitions for blind skiers and headed a crew of sailors with a range of disabilities in a 2,200-mile trans-Pacific yacht race.

“We didn’t finish last,” Miyares pointed out.

There have been a lot of steps along the way, including several weeks when Miyares and his family lived in Vancouver as part of a Veterans Affairs organ transplant program. That was in 2004, when Miyares received a new kidney in Portland’s VA Medical Center.

Miyares and Crockett, his German shepherd guide dog, were back at OHSU Hospital on Monday for his annual post-transplant checkup. And Miyares is doing great, said Dr. Douglas Norman, medical director of the OHSU kidney transplant program, which partners with the VA on several aspects of veterans’ health care.

One of Miyares’ business cards identifies him as president of the Disabled Businesspersons Association, a nonprofit based at San Diego State University. Another card identifies him as co-founder of Challenged America, a program that promotes sailing for people with disabilities.

He’s a speaker and a consultant whose story can resonate with millions of people on a national telecast, or with a few wounded veterans. Miyares shared his experiences with both audiences last week. He was featured Wednesday in a segment on NBC’s “Today” show. And, also last week, Miyares met with blind military personnel who’d lost their sight in Iraq or Afghanistan.

But for any audience, Miyares’ most compelling story starts with that body bag. He was a U.S. Army sergeant in 1968, Miyares said, when he started having health problems. After reporting to sick call, Miyares was told he had combat fatigue. After another visit, the 19-year-old soldier was told he had a peptic ulcer.

“They gave me Maalox. An M-16 ammo pouch is made for a bottle of Maalox,” he said. But that didn’t help his problem.

In his final mission in Vietnam, Miyares’ unit was helicoptered to a landing site near a village. The last thing he remembered was the sound of mortars targeting his unit and machine guns opening up from a tree line to their right.

Two days later, he woke up in a hospital in Saigon.

Miyares asked: What happened?

He was told: “You were in a body bag. They thought you were dead,” Miyares recounted.

It wasn’t enemy fire that dropped Miyares; it was a diabetic coma.

After his story appeared in a publication for disabled veterans, the soldier who’d found him — Brian Leet — contacted Miyares. It was Leet’s job to open body bags and make sure their occupants were dead.

“He told me, ‘You just had a different color,’” Miyares said. “He felt slight a pulse, then he called a medic who felt my pulse. They threw me on a helicopter to Saigon.”

After the diagnosis of diabetes in 1968, “They said I’d be lucky to live for 20 years,” he said.

His kidney disease was diagnosed in 1982, and Miyares became totally blind in 1984.

“I was probably legally blind in 1972 or ’73,” he said.

In 2004, Miyares was scheduled for a kidney transplant at the Portland Veterans Affairs Medical Center, the western regional hub for veterans’ organ transplants, which includes the Vancouver VA campus. The surgery is done in Portland, but the transplant patients spend most of their time here at the transplant lodging unit in Vancouver. Miyares lived in Vancouver for several weeks — before and after surgery — as wife JoAnn and their son Urban Paul helped take care of him.

“I didn’t realize how sick I was” until the new kidney went to work, he said.

Miyares’ work as a small-business resource for vets has been recognized by presidents George H.W. Bush and Bill Clinton, the Small Business Administration and Disabled American Veterans.

And in that role, he’s tapped into something other vets can understand: post-traumatic stress syndrome.

“What are the symptoms of PTSD?” Miyares posed.

“Workaholic; opinionated. You can get angry, but if you can control it, you can channel your energies differently,” Miyares said.

“Stress? I know what stress is,” Miyares said. “I’ve been dead.”

UK Channel 4 set to air documentary series on 2012 Paralympians

From Reel Screen:

UK terrestrial Channel 4 has commissioned a 10-part documentary series following the lives of a range of different Paralympians, ahead of the 2012 Olympic Games which are being held in London next year.

Best of British will focus on Paralympic athletes from a range of different sports, including racing, sitting volleyball, swimming, shot putting, wheelchair rugby, Cerebral Palsy football, para equestrian, tennis and blind football.

The series promises to reveal “the brutal training regimes and the fierce rivalries as they compete for a place in Paralympics GB.”

The series will premiere later this year.

Monday, August 29, 2011

U.S. researchers broke rules in 1940s Guatemala syphilis study that infected psychiatric hospital patients, prison inmates

From Reuters. In the picture, Guatemala's Vice president Rafael Espada talks about medical experiments conducted on Guatemalans.

WASHINGTON -– U.S. government researchers must have known they were violating ethical standards by deliberately infecting Guatemalan prison inmates and mental patients with syphilis for an experiment in the 1940s, according to a presidential commission.

The U.S.-funded research in Guatemala did not treat participants as human beings, failing to even inform them they were taking part in research, as was the case for a similar study in the United States, the commission said on Monday.

The United States apologized last year for the experiment, which was meant to test the drug penicillin, after it was uncovered decades later by a college professor.

President Barack Obama's Commission for the Study of Bioethical Issues investigated the syphilis experiment and discussed its key findings in Washington on Monday. A final report is due in December.

"They should shock the conscience not in spite of their medical context, but precisely because of it," said the commission's chairwoman Amy Gutmann, president of the University of Pennsylvania.

"The people who were in the know, did want to keep it secret because if it would become more widely known, it would become the subject of public criticism," she said.

The commission's conclusions have consequences for U.S. diplomacy and will impact the ethical discussion surrounding how new drugs are tested on patients, as manufacturers increasingly conduct clinical trials abroad.

Guatemala condemned the tests conducted by the U.S. Public Health Service (PHS) as a crime against humanity and said last year it would consider taking the case to an international court. It is conducting its own investigation. Victims of the study are suing the U.S. government.

In a November 2010 article in the Journal of the American Medical Association, directors of the National Institutes of Health and the Centers for Disease Control and Prevention rejected the possibility that such unethical practices could happen now. But the bioethics community is less convinced.

"Too often people become absorbed with the merit of a scientific question and can lose sight of the ethics in answering it," said Mary Faith Marshall, a professor at the University of Minnesota's Center for Bioethics. "Possibly, if you broaden the scope... to private industry, you'll see things that are even worse."

PHS officer Dr. John Cutler, a rather junior scientist at the time, led the Guatemala research from 1946 to 1948 under a grant from the NIH to the Pan American Sanitary Bureau and in collaboration with several Guatemalan agencies.

The commission's investigators said the study of sexually transmitted diseases such as syphilis was an important scientific goal at the time, but they found no reasonable excuse for the way in which the study was conducted, noting that it demonstrated "institutional failure."

The fact that the study was done shortly after the end of World War II, with widespread reporting on the use of prisoners and concentration camp inmates for human experiments should have made the researchers aware of the breach of standards, commission members said.

The investigators plowed through thousands of pages of archives to find that researchers in Guatemala deceived the participants who were members of especially vulnerable groups, kept poor notes, did not try hard to protect the subjects from risks and conducted experiments in illogical order.

"It was bad science. Regardless of the ethical issues ... from a purely scientific standpoint, I found this body of science bereft of any point," said commission member Dr. Nelson Michael of the Walter Reed Army Institute of Research.

Some 1,300 people were infected with venereal disease, more than half of them with syphilis. They included inmates exposed to infected prostitutes brought into jails and male and female patients in a mental hospital. Some subjects had bacteria poured on scrapes made on their genitals, arms or faces.

The patients were given antibiotic penicillin to test its ability to cure or prevent syphilis, an infection that can cause genital sores and rashes and, if left untreated, damage internal organs and cause paralysis, blindness or death.

In one example of archived records cited at the meeting, Dr. Cutler noted that one of the mentally ill women he had infected with syphilis appeared to be dying. Still, the woman remained a study subject and was further infected with STDs before she developed grueling side effects and died.

"They thought, 'we're in a war against disease and in war soldiers die'... Those who are on the cutting edge of the science are the ones that can easily fall," said Wellesley College professor Susan Reverby, whose research uncovered the records of the Guatemalan experiment.

"It's too easy to say, 'Oh, we'd never do anything like that," she told Reuters. "We really need to think about what we're doing now that's going to look horrible in 20 years."

Reverby uncovered the Guatemala archives after years of research into a medical study in Tuskegee, Alabama where hundreds of black American men were deliberately left untreated for syphilis. The experiment lasted 40 years until 1972.

Dr. Cutler, who went on to take part in the Tuskegee study, also participated in a 1943 gonorrhea experiment in Terre Haute, Indiana. There, prison inmates were deliberately infected with the STD, but were informed of the study and asked to give consent. Until his death in 2003, Cutler remained unapologetic about his research.

Guatemalan Vice President Dr. Rafael Espada planned to speak at Monday's event, but canceled those plans because of Hurricane Irene that hit the U.S. east coast over the weekend.

Paralympian Tatyana McFadden is lobbying for federal law to guarantee full participation for students with disabilities in athletics, physical education

New Mobility magazine has an August 2011 article about Paralympian Tatyana McFadden, who is lobbying for a federal law (like the one she got passed in Maryland) that guarantees full participation for students with disabilities in athletics and physical education.

Seven more states have joined Maryland in providing athletics equity for school-age athletes with disabilities.

From Tatyana McFadden's Equity in Sports website:

Together with her family, Tatyana sued the state of Maryland arguing for equal access to school athletics for people with disabilities. The lawsuit lasted four years, but resulted in the Fitness and Athletics Equity for Students with Disabilities Act being passed in the Maryland Senate and House, in April 2008. This landmark legislation was the first law in the country to allow, and encourage, students with disabilities to participate in their schools’ sports programs.

That landmark arbitration sparked change beyond Maryland’s borders with schools in 12 states now offering equal access to school sports teams for people with disabilities.

Tatyana won the 2008 Advocates in Disability Award and continues to speak out about the importance of equal opportunity for people with disabilities. Her goal is for all 50 states to eventually offer equal access to school sports for people with disabilities.

Helen Lamb, founder of camp that led to disabled adults creating "How's Your News," dies

From The Boston Globe:

Helen Lamb (pictured) picked up the nickname Hellcat for her take-no-prisoners approach to driving, but it fit tidily with all aspects of her life, not least her decision in 1953 to found a summer camp on Martha’s Vineyard for the developmentally disabled that would become known as Camp Jabberwocky.

Told it would be impossible, she did so anyway. Turning down federal money and the intrusion of outsiders, she built the camp from a borrowed cottage into a 14-acre site in Vineyard Haven, always staffed entirely with volunteers.

Famously forthright, she spoke in far less delicate terms than most who work with the developmentally disabled.

In 1966, she told the Globe that in its early days, the camp drew some contributions from the island’s wealthy summer visitors who saw “this gang, like refugees, making our way to the beach - those who couldn’t walk, in wheelchairs; those who could, helping to push; others carrying suitcases, braces, and casts.’’

Mrs. Lamb remained remarkably healthy into her 90s, until “it was almost like she said, ‘This will be a good time to die, and so I’m going to die,’ ’’ said her son, John of Brookline. She began sleeping more, stopped eating, and then ceased taking fluids before dying Friday night, the eve of her birthday, in her Oak Bluffs home at 96.

“Helen was an inspiring person,’’ said Lynne L. Wolf, who chairs the board of trustees for Camp Jabberwocky, which is officially named Martha’s Vineyard Cerebral Palsy Camp Inc.

“I would call her a visionary,’’ Wolf said, “someone who saw a need to give folks with disabilities a chance to have a vacation - both the campers and their families - and to do something really fun.’’

In the beginning, few could envision the kind of camp Mrs. Lamb believed she could create. She was a speech therapist at a Fall River clinic that treated developmentally disabled clients, and “the doctors were telling her, ‘No, you can’t do this,’ and she said, ‘Well, I’m doing it anyway,’ ’’ her son said.

“In 1953,’’ he said, “people weren’t taking handicapped kids to camp because they were afraid they might have seizures, they were afraid they might die. She said these kids are trapped in their apartments with not much air conditioning, particularly the ones who are poor.’’

Her sister was renting a cottage called “Happy Days’’ in Oak Bluffs and let Mrs. Lamb use it for a month. A week at a time, she brought a few children to the island.

The cottages were “so close together you can literally shake hands from one piazza to the next,’’ she told the Globe in 1966. “And ours had no hot water, no bathrooms as such, no cooking facilities except an old oil stove, which never did work, but this was all I could afford.’’

Sunday, August 28, 2011

In NY City, most hurricane evacuation shelters for Hurricane Irene inaccessible

From Susan Dooha, Executive Director of Center for Independence of the Disabled, New York, (CIDNY). Pictured is a wheelchair ramp to a locked door at a hurricane evacuation shelter. Photo by Susan Dooha.

From her visit to NYC hurricane evacuation shelters morning of August 27: "not one is accessible for wheelchairs or scooters--no ramps, locked doors at top of ramps, no signage, volunteers not aware and not prepped, no accessible cots (also where cots are -- up stairs), no accessible bathrooms or port-a-potties."

From her afternoon visit August 27: "very dangerous ramps at Seward Park HS (plywood soaked, no rails, impossible angles, platform between two ramps not big enough, etc.)--shelter for Battery Park and Lower East Side folks. They say bathroom accessible. No accessible cots. PWD there."

From her evening visit August 27 to NYC shelters: "Saw 6 shelters--ramps to locked doors, interior stairs to food areas, elevators to food areas (power outage issue), inaccessible bathrooms, lack of appropriate signage, no accessible cots, dangerous ramps to petite platforms (would have to back up very steep ramp to get door open--locked of course), plywood ramp soaked with rain with no rails or edges, heard of someone who attempted entry at a shelter in chair and was refused, heard about EMTs carrying people up stairs in chairs."

Friday, August 26, 2011

Blade runner Oscar Pistorius told: If he competes in 4x400 relay, he can only run first leg “to avoid danger to other athletes”

From The NY Times:

DAEGU, South Korea — After years of fighting the system and then struggling against his own limitations, Oscar Pistorius, the South African sprinter, double amputee and champion Paralympian who runs on carbon fiber blades, has finally succeeded in earning a place at a major able-bodied championship event.

But soon after he arrived here for the world track and field championships, the sport’s governing body announced a new restriction: if he competes in the 4x400 relay, he must run the first leg “to avoid danger to other athletes.”

When Pistorius first emerged at world-class level, the governing body conducted studies to determine whether his blades gave him an advantage over other runners. It decided to bar him from able-bodied competition in early 2008, but the Court of Arbitration for Sport overturned that decision, ruling that the international association had not proved the point. Eligible for the Olympics, his long-term goal, Pistorius failed to meet the qualifying standard for the 2008 Games in Beijing or — after a motorboat accident — for the 2009 world championships in Berlin.

But Pistorius, whose limbs were amputated when he was an infant because of a congenital problem, has improved his times, and he said he remained convinced that his blades did not give him a net advantage.

Lamine Diack, the president of track and field’s governing body, the International Association of Athletics Federations, said Friday that his organization considered Pistorius a “unique case.”

He said that the I.A.A.F. had asked South African track officials to have him run the first leg of the 4x400 relay if he does take part, presumably because of safety concerns on a crowded relay track where another runner might get hit by Pistorius’s blades. Runners remain in their lanes during the first leg of the relay before settling into a pack.

In an interview with L’Equipe, the French newspaper, this week, Pistorius said he expected to run the third leg in Daegu if he took part. But on Friday he said that he would run whatever leg officials told him to run while playing down any potential danger to other athletes.

“I’ve run in many relays in different legs and never had a problem or an incident,” he said.

Even without a realistic chance for a medal, these world athletics championships are all about opportunity for Pistorius.

At 24, he achieved a dramatic and unexpected breakthrough, dropping more than a half-second off his previous personal best in the 400 meters at a meet in Lignano, Italy, last month. His time, 45.07 seconds, put him under the world championship qualifying time of 45.25.

“I thought it was a phenomenal race,” he said. “When I crossed the line I knew it was going to be pretty good, but when I looked at the time I think I even surprised myself. I was just overjoyed.”

The wider world is clearly curious about what could happen next. His appearance in a crowded news conference room Friday, the eve of the championships, was a packed-to-the-rafters affair, surpassed in buzz here only by Usain Bolt’s appearance with Team Jamaica on Thursday.

“Truly a groundbreaking moment in athletics,” said Michael Johnson, the retired 400-meter world-record holder and eight-time world champion who shares a sponsor with Pistorius and served as baritone-voiced master of ceremonies by posing some opening questions to him.

But Pistorius, hair cropped short and blue jeans covering his prosthetic limbs, was quick to put expectations in perspective in a grueling event in which sub-45-second performances are the coin of the realm for serious contenders like the defending world champion, LaShawn Merritt of the United States, and the fast-rising teenager Kirani James of Grenada.

“If I can run consistently mid to low 45 seconds, I’ll be very, very happy,” Pistorius said.

His longtime coach, Ampie Louw, said he would be “over the moon” if Pistorius managed to advance out of the first round Sunday and reach the semifinals.

But though Pistorius and Louw were resolutely upbeat, Pistorius, nicknamed Blade Runner, continues to generate conflicting emotions in the milieu that he has long sought to integrate.

“I think I have kind of mixed feelings about it,” said Angelo Taylor, the veteran American 400 and 400-meter hurdle runner. “It definitely is an inspiration for a lot of people, but at the same time, he doesn’t have to deal with certain things like we have to, like the injury part. You have a calf injury. You have plantar fasciitis or any foot injury that would probably disable you from competing, he doesn’t have to worry about that. I think that’s the disadvantage part of it, but, you know, I applaud him. Just to come out here and try to compete with the guys with legs, that’s a big step for him.”

Asked if the continued speculation tainted the moment for him in some fashion, Pistorius paused before answering.

“You could see it that way, but I think if you look at how much positivity has come out of it and the negativity is 5 percent, 10 percent,” he said. “I think I might get a little too emotional at times and let that 10 percent overcast the 90 percent of positive stuff that is getting covered. You know, I think I’ve become more calm the last couple of years when it comes to this topic. I’m more at ease. I’ve done a lot of tests when it comes to prosthetic legs. I know that if they were providing such an advantage as some of the claims that have been made, there would be many other Paralympic athletes running and qualifying.”

He said his significant improvement this year — dropping nearly a second off his previous best time — was the result of being mentally fresh and reshaping his body: losing some upper-body muscle while strengthening his shoulders and dropping some weight.

The changes have not been without challenges. According to Louw, the lost weight has made it harder for Pistorius to find a tight fit in the sockets that attach his legs to his blades.

“It’s creating a big problem for us, losing some energy from the bone to the socket,” Louw said.

Marla Runyan, a legally blind American, became the first Paralympian to run in the Olympics in 2000 when she finished eighth in the 1,500. In Beijing, another Paralympian, Pistorius’s South African compatriot Natalie du Toit, who is a single amputee, competed in open-water swimming.

For now, Pistorius, who will have to meet the qualifying standard again to compete in next year’s Olympics in London, is the first amputee to run in the world championships, and he is well aware of the powerful message that sends and of the powerful television images it will generate.

“I have grown up on prosthetic limbs, and I am an advocate for people with disabilities,” he said. “I think we live in a world where more and more people are becoming amputees through diabetes or motor vehicle accidents, and disability is not something we need to be shy about talking about or think it’s taboo.”

British teen, 15, has become the youngest person in Europe to be fitted with bionic fingers

From The Telegraph in the UK:

Chloe Holmes (pictured) lost all her fingers to septicaemia as a toddler and has never been able to pick things up for herself.

But her parents have now forked out £38,000 for a full set of bionic left digits which are controlled by electronic signals from the nerve endings in her hand.

Chloe is now learning basic tasks such as cleaning her teeth and using a knife and fork for the first time.

She said: ''Growing up has been really difficult. I can't play sports or anything and I can't hold things.

''The best thing about my new hand is that now I can hold things. It is quite difficult, but I am getting used to it.

''I'm looking forward to going back to school so everyone can see it.''

Chloe, of Swindon, Wilts., contracted streptococcal septicaemia after being struck down with chicken pox aged three-and-a-half.

She spent three months in Bristol Children's Hospital, where her heart stopped four times and doctors feared she might not survive.

Chloe lost all the fingers on her left hand and was left with one thumb and half a finger on her right hand.

But her life has changed forever after being fitted with the bionic fingers, made by Touch Bionics in Scotland.

Parents Sue and Pete, both 41, said they never had second thoughts despite the cost.

''I sat down with Chloe and talked about it, and she said it was too much money,'' said Sue.

''But we decided if it is going to help her and if she is going to use it, then it was something that we had to do.

''We are all chuffed to bits with it and it is so much better than we thought it would be. I didn't think the fingers would all move individually but they do, it is great.

''We were nervous going through the whole process because it is all new. They have only been doing it for about 18 months.

''But it has completely changed her life, she can now do the simplest things, like cleaning her teeth and cutting up her own food.''

The hand, which has been made specifically to fit Chloe's hand, is fitted with sensors in the sleeve which enable her to control the digits.

Chloe is the youngest and first person outside of America to have the bionic fingers, which has put her at the centre of attention on numerous occasions

Dad Pete said: ''I got her to come and collect my pint from the bar the other day and people just couldn't believe it.''

Sue added ''She got stopped coming through customs when we came back from Scotland and they swabbed her arm for drugs.

''They had never seen anything like it before but said they had to follow the rules. Chloe gave them a bit of a demonstration and they were stunned.

''We are just absolutely delighted with it, it has made a huge difference to her life.''

In Missouri, Medicaid recipients forced to wait, hope

From The News-Leader:

Katie Haverstick, 32, (pictured) has spina bifida, a birth defect that has left her in a wheelchair and prone to bedsores. She can't get out of bed or take a shower by herself.

The state of Missouri considers the Springfield woman disabled enough that she could live in a nursing home. Haverstick has spent about two months waiting for home health care in the apartment complex where she lives because of delays by an Indiana company that Missouri hired to verify she needed the care.

"I need help," said Haverstick, who has relied on her mother and stepfather.

She learned Wednesday that her home health care could start soon, but hundreds of other disabled or elderly Medicaid recipients across the state are still waiting to learn if they qualify for home health care or if their health care can be modified.

The Missouri Alliance for Home Care, an industry group of home health agencies, has asked the state to terminate its contract with the Indiana company, SynCare LLC. The contract, worth up to $5.5 million, calls for the company to screen more than 50,000 Medicaid recipients. It began doing the assessments in May.

Stephanie DeKemper, the CEO of SynCare, said in a letter emailed to the News-Leader today that it was expecting to process only 4,400 cases a month, but health care providers have been sending more cases to them with more than 1,000 calls a day. The state hired SynCare after questions were raised about whether it was a conflict of interest to have the health care providers assess whether someone was eligible for services that the health care providers would financially benefit from.

“Providers used the loophole of requesting changes to jump the line, so to speak,” DeKemper said. “That has resulted in over 1,000 calls a day, and instead of processing the backlog of 4,400 per month to processing all 52,000 backlog/conversion cases. We are receiving requests on participants we have not received from the state.”

Jacqueline Lapine, a spokeswoman for the state Department of Health and Senior Services, said the department "is committed to ensuring that participants receive services in a timely and accurate manner."

"We are aware of the problems SynCare has encountered in these initial months of the contract, and will continue to hold them accountable under the terms of the contract," Lapine said.

Officials at Oxford HealthCare said their company had more than 160 people waiting to hear from SynCare, with waits as long as 104 days. The average wait so far in Greene County for Oxford is 57 days.

Cheryl Fitch, the vice president for Oxford, said the patients are very fragile.

"The only reason they can stay in their homes is because of what we do for them," Fitch said. "Many times they don't have family to care for them. They're sitting there with no help."

The contract requires SynCare to complete assessments that need to be done in person in 15 calendar days. The company can be fined if it fails to do this in more than 5 percent of the cases each month.

The state has been corresponding with the company trying to address issues.
On Aug. 15, Celesta Hartgraves, the director of the Division of Senior and Disability Services, said in a letter to the CEO of SynCare, Stephanie DeKemper, that the state will be reviewing the company's billing at the end of September to see if SynCare is doing its assessments on time.

"If not, we will be assessing liquidated damages as stated in the contract," Hartgraves wrote.

The company laid off 29 employees earlier this month, the St. Louis Post-Dispatch reported.

On Tuesday, Hartgraves wrote DeKemper that the contract requires it to have at least 130 full-time staff doing assessments, but a staff listing provided to the state shows only 119 employees. Hartgraves asked for a written plan to be submitted Wednesday to comply with the staffing requirements.

DeKemper said that SynCare has added 40 employees to its call center to reduce wait times and recalled half the employees who were laid off. She said SynCare has processed 10,193 reassessments.

“We are getting to people as fast as we can under the circumstances,” DeKemper said. “Many of the participants being reported as experiencing adverse affects were waiting for services for a very long time and some participants have been waiting for up to five years for review of their care plan.”

Dru Sears, 70, of rural Springfield, asked SynCare in June about increasing the number of hours a home health aide helps care for her mother, who is 95 and has Alzheimer's. An aide currently provides 21/2 to 3 hours of help five days a week. She hasn't heard back from the company.

Sears' husband, who may also have dementia, has been in a nursing home but is coming home today. Sears uses the time the aide is at the house to do errands like going to the grocery store or the doctor.

"Every day I wake up and go to bed praying, 'God, you need to keep me healthy. I have people counting on me,' " Sears said.

In Victoria, Australia, authorities say it's too costly to help disabled students at school

From The Age in Australia. In the picture, Jade Sievwright with her mother, Anne Witcombe.

Victorian education authorities insist they have the right to restrict the number of integration aides and other specialists that they hire - even if it means discriminating against students with disabilities.

And the state says it would cost almost $1 billion if it had to to hire an integration aide for every student with an IQ of 75 or less, which it could not afford.

The lawyers for Victoria's Education Department are arguing that states' rights trump the Federal Disability Discrimination Act in a submission to a discrimination case currently being considered by the Federal Court.

Advertisement: Story continues below Jade Sievwright, a Victorian teenager with an IQ of around 70, is suing the Education Department for discrimination, claiming it failed to provide her with the integration aide and speech therapist she needs to reach her full potential.

But in a late submission to the case, the Education Department is arguing that even if it is found to have discriminated against Ms Sievwright by failing to provide her with a full-time aide and a speech therapist, ''it is beyond Commonwealth legislative power'' to compel the state to hire these education aides.

The submission cites a 1995 High Court decision in a dispute about the awards of state public servants. In that case, the High Court ruled that states have the right to determine the size and nature of their workplace.

The submission in the latest case argues that, if failing to provide Ms Sievwright with an aide and speech therapist is found to be discriminatory, this would mean that the Education Department had not employed ''sufficient numbers of aides to provide full-time assistance to students in Jade's IQ cohort and to employ sufficient numbers of speech therapists to provide speech therapy on demand to all students assessed as requiring such therapy''.

Their submission states that it would cost $975 million to provide full-time integration aides to all students with an IQ of 75 or less in the state school system, and would mean employing 20,000 staff across 1539 schools - an average of 13 staff per school.

The submission states that the Act ''interferes with the right of the State to determine the number and identity of aides and speech therapists it will employ in the Department, and by extension, the degree to which it will provide aides to students in classrooms and allied health services (like speech therapists) in a school setting''.

This argument on constitutional grounds has horrified disability advocates, who fear it may have serious ramifications for other discrimination cases. ''Put simply, the state of Victoria's argument is that even if the Federal Court decides a child requires a full-time aide, it cannot order the state to provide it because to do so would amount to interfering with a basic function of the state,'' said solicitor Gabriel Kuek of Access Law, the firm representing Ms Sievwright.

''If successful, that argument will have very significant repercussions as it would affect every single disabled child in Australia. It would substantially diminish the protections the Disability Discrimination Act provides to disabled children.''

Stephanie Gotlib, executive officer of national peak body Children With Disability Australia, said parents across Australia regularly used the Federal Disability Discrimination Act to seek extra support for their children in school.

''The Department of Education should have a commitment to the Disability Act, not trying to weasel their way out of their legislative responsibilities,'' she said.

But the Federal Disability Discrimination Commissioner Graeme Innes does not believe that any ruling in this case would have widespread implications for the disabled.

''The court could still find that the student had been discriminated against, but also that the department does not have to hire a particular person,'' he said.

Mr Innes said families of disabled children frequently took discrimination cases to the Federal Court, and education departments were often required ''to make reasonable adjustment'' of their budgets and staffing to provide extra help to the children in question - without being required to provide the employment of specific aides or teachers.

Education Minister Martin Dixon could not be reached for comment. The case resumes in the Federal Court in late September.

Task force bill that would close developmentally disabled center is conditionally vetoed by NJ Gov. Christie


TRENTON — Gov. Chris Christie has conditionally vetoed a bill that establishes a task force to recommend closing one or more of the state’s seven developmental centers.

“I support the sponsors’ intention of putting forward legislation that acknowledges the importance of enabling individuals with a developmental disability to receive services and support in the least restrictive setting appropriate to their needs,” said Christie. “However, I am concerned that this legislation, as drafted, will hinder the State’s efforts to comply with the Olmstead decision, which requires states to provide community living options and other supports to individuals with developmental disabilities who do not require or want institutionalized care.”

Christie edited the bill to reduce its membership from 11 to 5, with three members appointed by him and two recommended by the Senate president and Assembly speaker.

He also set a 90 to 180 day timeline for the commission to submit a plan to the governor, and changed the criteria the task force will consider to include more of how well communities are able to provide services to the developmentally disabled.

Christie said the state needs to close at least one center because “simply put, the state is currently operating more developmental centers than necessary,” since the number of people housed in them has declined by 1,200, or 33 percent, since 1998.

Tom Baffuto, executive director of The Arc of New Jersey, a family advocacy group that worried the legislation would inhibit the closing of institutions, said the governor made the bill much better.

The governor de-emphasized the importance of job losses in closing a center, by changing the word from "will" to "may" when it comes to considering the economic impact of a closure, Baffuto said. What is best for people with developmental disabilities is more important than a closure's impact on the local economy, he said.

"We appreciate this administration for making closure a priority. We see this as an opportunity to close many. We really don't need seven developmental centers," Baffuto said.

Baffuto added he hopes this legislation does not alter the administration's decision to close Vineland Developmental Center in Cumberland County.

Sen. Jeff Van Drew, (D- Cape May) said keeping Vineland open was exactly his aim in sponsoring the bill.

The action taken by the governor gives Vineland a new life" Van Drew said.

"Under this bill, all seven developmental centers will be studied comprehensively by a task force which will decide on facility closures. The decision made by this panel after a thorough review will be binding," he said.

Thursday, August 25, 2011

Wilds of Idaho become a little more accessible with a new trail near Ketchum

From Idaho Statesman:

KETCHUM — Amanda Walton took off ahead of a group heading down the Murdock Creek Trail in the Boulder Mountains recently, her electric wheelchair bouncing over small rocks and bumps.

Walton, a U.S. Paralympic gold medalist from Ketchum, got going too fast and dumped her chair. She lay on the trail until the rest of her group caught up. With the powerful strength of her upper body, she got up with help from two hikers and a third who righted her chair.

Soon, she was back on the trail with a few scrapes but no complaints.

“I compare it to jogging and taking a digger,” she said.

Walton is used to picking herself up and overcoming physical handicaps. She was an All American field hockey and lacrosse player at Yale when her car was struck by a driver being chased by police and she suffered a traumatic brain injury. Now she’s a competitive Paralympic swimmer.

Erik Schultz, executive director of the Arthur Schultz Foundation in Sun Valley, can relate. He and Rep. Mike Simpson, R-Idaho, came up with the idea of building primitive access trails into the backcounty to open the areas up to people with mobility limitations.

Schultz, who lost the use of his legs in a fall while backcountry skiing in the 1990s, had been up and down the trail dozens of times before the U.S. Forest Service upgraded it in 2010. Wilderness trips, by definition, aren’t supposed to be easy, he said.

“I’ve taken a few headers on this,” he said.

Walton and Schultz made the trip this week to celebrate the grand opening of the Murdock Trail, one of two that Simpson had proposed in his Central Idaho Economic Development and Recreation Act.

The wilderness bill hasn’t passed, but Simpson isn’t waiting on some of his priorities. The member of the House Appropriations Committee inserted money in the budget to upgrade the trails.

Simpson said he had no problem getting support for the $200,000 to upgrade Murdock Creek Trail and Phyllis Lake Trail in the White Cloud Mountains.

“The one reason this got done is because it is the right thing to do,” Simpson said.

The Arthur Schultz Foundation, one of whose missions is to provide mobility equipment to those who need it around the world, paid for the environmental assessment necessary. The trail takes users into what would be the Hemingway wilderness area if Simpson’s bill ever passes. The beginning of the fl-mile trail lies off Idaho 75 at the end of North Fork Canyon Road, which passes by the headquarters of the Sawtooth National Recreation Area about eight miles north of Ketchum.

Schultz worked with Simpson to develop a trail that would meet the needs and desires of many different people, such as Jet Turner of Bellevue, who walked in on crutches.

Norman Friedman of Ketchum, who has Parkinson’s disease, used a walker to travel a quarter-mile to the first of two bridges over Murdock. “Up to 12 years ago I did marathons,” he said. “I still like to get out.”

Simpson, an avid golfer, had envisioned a golf cart-type path, but Schultz convinced him it wasn’t wild enough. The trail needs to be hard, mostly flat, but more like, well, a trail.

People with mobility limitations are diverse and include everyone from children to the elderly. Schultz bristles when he hears people describe wilderness as discriminatory to people with disabilities.

“Don’t pigeonhole us,” he said.

Since his accident, he has skied across Yellowstone National Park and regularly goes on whitewater river trips into places like the Frank Church-River of No Return Wilderness. Ed Cannady, the Forest Service recreation specialist who did the studies, has done many trips into the Boulder-White Clouds with Schultz.

“Erik didn’t need a trail,” Cannady said. “He wanted it for other people.”

Electrical engineer creates “Frankenkindle” for sister with cerebral palsy

From Engadget:

Back in March, an electrical engineer named Glenn decided to embark on a project to help his sister. Glenn’s sister has Cerebral Palsy which is a physical disability that most commonly affects motor control.

This makes it rather difficult to use modern electronics due to their tiny buttons and sensitive touch interfaces. So, the kind brother set about modifying a Kindle to transform it into something that his sister could easily use.

Glenn, who has a degree in electrical engineering, said that engineering students usually choose their major for one overarching reason: to improve the quality of life on this planet. He also said he loves building things, so he decided to create what he calls the “Frankenkindle.”

He posted the finished product on Sunday, along with the YouTube video below that explains the technical parts of the device. The Frankenkindle has a 5-way keypad (up, down, left, right, and center), as well as a “Home” button.

Glenn took the controls from an e-reader for kids called the V.Reader. During a trip to Best Buy, Glenn’s sister found the buttons were easy to use; however, it only displayed children’s books.

Glenn bought the V.Reader and referred to it as his “Organ Donor.” Each silicone button has two wires attached, which he then routed into the Kindle’s interface board.

Though it’s still a prototype at this point, the Frankenkindle is rather impressive. The prototype was designed for what Glenn thinks his sister will need, but he’ll do some revisions once she tests it out.

As of now, the only thing that the Kindle needs is a permanent mount and a little more wire organization. Though it doesn’t look as pretty as a normal Kindle, Glenn says it doesn’t have to be. As long as it’s functional, that’s all that matters.

In NJ schools, iPads assist disabled students to communicate, make music

From the Asbury Park Press in NJ:

Anthony Leuck of Berkeley is used to communicating in ways that aren’t quite conventional.

The 18-year-old has an undiagnosed disorder that makes speech and muscle control extremely difficult. He interacts through eye gaze, or by tapping his head against a switch on a communication device to spell out words.

But on a recent Wednesday afternoon at the Lehmann Center, a special-needs school in Lakewood, Leuck was given a different challenge: making music with his hands.

He met the challenge, with some effort, sliding his knuckles lightly over the digital image of a guitar on an iPad screen. The touches produced a series of acoustic-style chords from the iPad – and a big grin from Leuck.

Leuck is among hundreds of special-needs students in the state, and elsewhere, who will be working with iPads in the classroom this year.

Since Apple launched the device in April 2010 – 3 million devices sold in 80 days – they’ve been gaining popularity in the special-needs community.

The iPads are customizable to each child’s needs, are lightweight and mobile, and give the kids the sense they’re plugged into a larger, high-tech community, educators and parents said.

Leuck’s Lehmann instructors credited his love of music (his favorite band is Kiss), the instant reward (Leuck touched the screen and heard the chord immediately) – and, of course, the iPad itself – for his small victory.

“These children can access and enjoy everything a typically developing child would enjoy – they just have to access it differently,” said Gina Shulman, Lehmann social worker. “We have that fine motor skill; we can take a finger and press all those tiny keyboard buttons and little tiny switches. Now, our children, with just a gentle touch, can color; they can play instruments.”

Marlboro Public Schools bought 60 iPads that will be introduced to autistic students this year; a few students who need them to communicate received them in 2010, said Robert Klein, the district’s director of special services.

Klein said an autistic student who began using the devices last year “initiated, really, one of his first conversations ever using the iPad with staff.” A separate pilot program in the district, funded by a $10,000 Optimum grant last year, showed improved reading scores for iPad users, district officials said.

One of the applications the district uses encourages autistic students to make eye contact. Another allows a user to select from images on a screen to communicate everything from how he or she is feeling to where he or she wants to go, Klein said. The applications, or “apps,” can range in price from free to $200 and beyond.

“It’s turning out to be, really, a magical thing,” Klein said. “The disability is such that (children with autism) live within themselves. The iPads draw them out.”

Apple conducted one training session for the district in June; another will be held before school begins, Klein said. The company declined this week to disclose how many districts in New Jersey are using the devices.

“There are devices that do communicate for students with autism but they are bulkier, bigger, more difficult to use and a lot more expensive; they can run into the thousands where the iPad is $500,” Klein said. “If they can use the iPad to say what they want to say by just tapping a picture on the screen, that’s a great thing.”

The district purchased the devices, training and accessories with $77,330 in American Recovery and Reinvestment Act funds received two years ago, according to the district.

Families of students at Morristown-Beard School, a private school in Morristown, are required to buy their own iPads this school year; about 540 youths will use them in classrooms here, school spokesman Steve Patchett said.

Among them will be students with special needs ranging from attention deficit disorder to dyslexia and auditory processing issues, said Jenna Sumner, director of the school’s learning center.

One application students are using provides a series of on-screen bubbles in which to organize daily activities, thoughts or assignments. Another allows them to hear a vocal output of what they’ve typed. Students may also read a passage aloud and see it translated into text, Sumner said.

“I do think as we go through this year, we’re going to learn a tremendous amount ourselves about what is highly effective with students,” Sumner said. “Learning is individual. So, getting the right tool or the right application in the right hands is something we’re going to look to do.”

Meanwhile, therapists at the Lehmann school anticipate the devices will help get students better acclimated to using touch to navigate their world.

Settings on some applications can be adjusted to the type of touch students are able to produce – whether one-finger, two-finger, dragging fingers or a direct tap, occupational therapist Belinda McKee said. Or, they can be used to challenge students to try a different type of touch, McKee said.

Lehmann bought two of the devices for $699 each in August, using a private donation from the Lakewood Lions Club. The school made the move after seeing the success students had with iPads at home. They hope to purchase more, said Shulman and Patricia Carlesimo, executive director of Ladacin Network.

Ladacin is the umbrella agency for Lehmann and the Schroth Center in Ocean Township. Both are private, nonprofit schools for children with multiple disabilities.

“Once they’ve mastered the use of a switch, they can access the computer, they can move their chair, they can increase their mobility,” Carlesimo said. “The whole world opens up.”

UN hails Europe’s retention of polio-free status as ‘tremendous news’

From UN News Centre:

Europe will retain its status as a polio-free region after Member States took satisfactory steps to combat an imported outbreak of the debilitating and sometimes fatal disease last year, in what the United Nations health agency hailed as “tremendous news.”

The 53-nation region, which for the purposes of the UN World Health Organization (WHO) includes ex-Soviet nations in Central Asia, with a combined population of some 900 million people, was officially certified as polio-free in 2002 after there had been no indigenous cases for more than three years.

But last year the infection was imported by a traveller or travellers from northern India into Tajikistan, from where it spread to some 475 patients, killing 30 of them, in Kazakhstan, Russia, Tajikistan and Turkmenistan.

At a meeting yesterday in Copenhagen, Denmark, the European Regional Certification Commission for Poliomyelitis Eradication (RCC), an independent panel of international public health experts, noted that transmission had been interrupted and no new cases had been reported since September 2010 because countries had taken effective action. Hence there was no need to re-certify all 53 Member States.

“The RCC decision is tremendous news for the region and a credit to all the Member States and partners that individually, collectively and promptly combated the first and largest outbreak of poliomyelitis the Region has seen since it was declared polio-free in 2002,” WHO Regional Director Zsuzsanna Jakab said.

“I am also very pleased that the hard work and personal commitments of the presidents, prime ministers and health ministers have produced this success, which shows the importance and value of political commitment and joint action.”

The RCC concluded that countries had provided sufficient evidence addressing immunization coverage and on the sensitivity of their polio surveillance systems, including establishing sustainable transport of specimens.

“The RCC’s assessment is extremely important,” WHO Assistant Director-General for Polio, Emergencies and Country Collaboration Bruce Aylward said. “At the same time, we are seeing critical progress in India, the source of last year’s importations into the European Region, and where we have not seen a case in more than six months.

“Taken together, these two developments constitute strong evidence that polio eradication can be achieved rapidly, with sufficient financing and political will.”

Since the launch in 1988 of the Global Polio Eradication Initiative (GPEI), spearheaded by WHO, the UN Children’s Fund (UNICEF), Rotary International and the United States Centers for Disease Control and Prevention, the incidence of polio has been reduced by more than 99 per cent.

At the time, more than 350 000 children were paralyzed every year in more than 125 endemic countries. So far in 2011, 325 cases have been reported worldwide. Only four countries remain endemic: Afghanistan, India, Nigeria and Pakistan.

In Finland, study shows disabled people struggle to find work

From YLE in Finland:

Despite the fact that many people with physical disabilities would like to work, they are clearly underrepresented in the labour maket, a fresh report indicates.

As a group, the physically disabled are an underused, significant economic resource, according to a report released by the Sitra Finnish Innovation Fund and VATES Foundation.

The implementation of work experience training programs for the disabled could help more people get long-term employment, Jukka Lindberg, Development Manager at VATES, said.

Examples from England and Sweden show that work experience and training in the workplace significantly improves employment prospects.

However, as a group people with disabilities often don't find their way into employment programs, and Lindberg said the reasons behind this roadblock will be looked at more closely.

The VATES and Sitra survey found that companies are indeed interested in hiring the disabled, but among other things, they need to get more information about various financial aid available to them and prospective employees.

There are some 200,000 disabled people in Finland. According to the survey, one-third of the group were found to a have good ability to work, and many seek regular part-time jobs.

Economically speaking, Lindberg said, this demographic is a major labour resource that should be exploited.

"We should get away from focusing on the handicap and instead look at the person's knowledge and motivation," Lindberg said.

The VATES Foundation promotes employment and vocational rehabilitation of people with disabilities or other disadvantaged groups. Sitra, the Finnish Innovation Fund, is charged with promoting "stable and balanced development in Finland, the growth of its economy and its international competitiveness and co-operation," according to its web site.

Wednesday, August 24, 2011

UIC professor Carrie Sandahl turns camera on Hollywood images of people with disabilities

UIC press release:

“Rain Man.” “Forrest Gump.” “Wait Until Dark.” “Million Dollar Baby.” What do these movies have in common?

Each is about someone who’s disabled in some way. And none offers any insight into the realities of being disabled.

But maybe these are just bad examples. Are there any films that give a true representation of a person who has a disability?

“The answer is no,” says Carrie Sandahl, who is making a documentary on how Hollywood portrays the disabled.

Her film, “Code of the Freaks,” illustrates a number of “horribly oppressive stereotypes,” said Sandahl, associate professor of disability and human development.

“Blind women are beautiful, defenseless, stalked and need to be saved by men,” she said. See Madeleine Stowe and Aidan Quinn in “Blink.”

“Blind men are sexy and swordfighters or superheroes. They somehow get compensatory skills for their loss of sight.” See Ben Affleck in “Daredevil.”

A section of the documentary called “Cure or Kill” highlights Hollywood’s two favorite ways to solve the problem of disability.

In “Avatar,” a crippled Sam Worthington finds new life inside the body of a big blue alien. In “Million Dollar Baby,” Hilary Swank is paralyzed in the boxing ring and prevails upon her manager, played by Clint Eastwood, to put her out of her misery.

“A plot often serves as what I call ‘a fable for the abled,’” Sandahl said. “It’s a catalyst for a nondisabled person to become a better person through their interaction with a disabled person.”

Thus Tom Cruise is transformed from a selfish jerk into a worthwhile human being by his relationship with his autistic brother, Dustin Hoffman, in “Rain Man.”

“Disabled characters are used for symbolic purposes,” Sandahl said. When the wheelchair-using protagonist of “Born on the Fourth of July” — another Cruise role — becomes an antiwar activist, “it represents how the nation came to grips with the [Vietnam] war.”

But the disabled aren’t shown as flesh-and-blood members of society. As the “Code of the Freaks” blog puts it: “Characters with disabilities are not presented as three-dimensional people; rather, the disability itself is the character.”

Hollywood’s focus is seldom on the issues faced by the disabled: “the abysmal employment rate, the lack of health care, the fact that so many are incarcerated in nursing homes,” she said.

“Disability is everywhere in films, but there are very few disabled actors [the deaf actress Marlee Matlin being a notable exception],” Sandahl said.

No problem, because able-bodied actors are eager to take these “coveted” roles, she said.

“The stars are nominated for Oscars inordinately, and often win. We all knew ‘The King’s Speech’ was going to win.”

“Code of the Freaks” will include footage from “salons” where disabled and nondisabled audiences react to film clips. The next one, on images of disabled African American men, is from 6 to 8:30 p.m. Friday at the First United Methodist Church, 77 W. Washington St.

Sandahl runs the salons with Susan Nussbaum, a playwright and actor; they are writing the documentary together. Sandahl is in charge of research and advises on editing.

Working with them are Salome Chasnoff, executive director of Beyondmedia Education, Laurie Little of Luminist Films and Aly Patsavas, a Ph.D. student in disability studies.

Sandahl estimates it will take another two years to finish the project. They are still raising funds for the film.

Born with sacral agenesis, which causes mobility impairment and short stature, Sandahl walks with canes over short distances and otherwise uses a wheelchair.

She was raised in Hood River, Ore. She majored in theater at the University of Puget Sound in Tacoma, Wash., and earned a master’s degree and Ph.D. at the University of Wisconsin-Madison, both in theater studies.

She taught at Florida State University in Tallahassee for 11 years. But she often came to Chicago for disability art and culture events. With Carol Gill, associate professor of disability and human development at UIC, she did a National Endowment for the Arts-funded study of barriers and facilitators of careers in the arts for people with disabilities.

“I got to know the faculty and students here,” she said. “Then there was an opening [in 2009], and it was a match.”
She established an “administrative home” at UIC for the Chicago Bodies of Work festival of disability arts and culture, last held in 2006 and planned again for 2013.

Sandahl is married to Randal Svea, a web programmer, and they have two children, Gregory, 9, and Audrey, 3. They live in Oak Park.

“I love going to the theater and spending time with my kids,” she said.

Sandahl also loves her work.

“Sometimes I don’t believe I’m getting paid for what I do,” she said, “because I’m having so much fun.”