Wednesday, February 29, 2012

Federal government proposal to require hiring of disabled workers could reshape hiring at 200,000 companies that generate $700 billion a year in contracts

from The Wall Street Journal. I don't like the name of this graphic but wanted you all to see it.

Employers and business groups are trying to stop an Obama administration effort that calls for federal contractors to hire a minimum number of disabled workers and could penalize those who don't by revoking their contracts.

The proposal could reshape hiring at roughly 200,000 companies that generate $700 billion a year in contracts with the federal government. They include defense contractor Lockheed Martin Corp., aircraft maker Boeing Co. and firms across the health-care, construction and information-technology industries.

Under the Labor Department plan, most firms that contract or subcontract with the federal government would be asked to have disabled people make up 7% of their work force. While the department says it wouldn't be an explicit requirement, companies that don't hit the target could have their contracts canceled or could be barred from winning future contracts until they show they are trying to meet the target.

Companies have flooded the department with complaints that the rule amounts to a first-ever government quota for hiring disabled workers that would expose them to a thicket of legal pitfalls. Some employers say there might not be enough qualified disabled workers in their fields to meet that target and that they may have to fire nondisabled workers to achieve the ratio. Others say that existing federal law actually prohibits them from asking whether a job applicant is disabled, potentially forcing firms to violate one law in order to comply with another.

"We are very concerned that the department is moving forward with what is clearly a fundamental change in longstanding policies regarding affirmative action," said Jeffrey McGuiness, president of the HR Policy Association, a trade group for human-resource executives at more than 300 of the largest private-sector U.S. companies.

The proposed changes were pushed in part by disability advocates, who say that decades-old laws intended to bring disabled people into the work force just aren't working. Technology has made it far easier for victims of illness or accident to complete work tasks.

"Often people make assumptions that people with disabilities can't do a 'real' job," said Patrick Wojahn, a public-policy analyst for the National Disability Rights Network.

The proposed contracting requirements are part of a broader federal effort aimed at making it easier for disabled people to find work, including injured war veterans. On Tuesday, the Equal Employment Opportunity Commission released updated guidelines to ensure that veterans with wartime injuries such as post traumatic stress disorder and other ailments qualify for federal disability protections.

The Labor Department says the effort, disclosed in December, is necessary because 79.2% of working-age people with functional disabilities are out of the labor force entirely, compared with 30.5% of people without disabilities, a longstanding gap. Counting those who remain in the labor force, the unemployment rate for people with disabilities was 12.9% in January, compared with an unemployment rate of 8.7% for people without disabilities.

Current law encourages federal contractors to maintain a diverse work force but sets no parameters on how many jobs must go to disabled Americans.

"What gets measured gets done," said Patricia Shiu, director of the Labor Department's Office of Federal Contract Compliance Programs. "And we're in the business of getting things done." The agency is proposing the change as an update to the Rehabilitation Act of 1973.

The 7% target would apply to a contractor's work force as well as subsets of workers based on factors such as their job description and wage rates. Disability advocates hope the subset requirement will ensure disabled workers aren't unfairly steered toward lower-paying jobs. The department settled on a 7% target because it estimates that 5.7% of the civilian labor force—those working or looking for work—has a disability but another 1.7% of the civilian population is disabled and, by the Labor Department's estimation, wants work but is discouraged from seeking it.

Regulators also are considering requiring that 2% of contractors' work forces be comprised of severely disabled workers, such as those with total deafness, blindness, or missing extremities.

The scope of what would constitute a disability also isn't clear since the Labor Department's proposal doesn't include a specific list. The Americans with Disabilities Act, updated in 2008, says that workers are disabled if they have a physical or mental impairment that substantially limits one or more of their major life activities. Lawyers who represent employers say that could include hundreds of possibilities from blindness to deafness to the less apparent such as asthma or mental illness.

Businesses with fewer than 50 employees and less than $50,000 in federal contracts would be exempt from the hiring changes.

Employers that don't reach the targets would be given a chance to improve compliance and would only lose contracts in "the most egregious cases" of not following the rule, Ms. Shiu said.

Business officials say it isn't that simple. "You're looking to fill a position with the best possible hire and that doesn't necessarily preclude or exclude somebody with a disability," said Joe Trauger, a vice president for human-resources policy at the National Association of Manufacturers, a trade group representing 11,000 companies.

Sonalysts Inc., an employee-owned professional-services business of 400 workers that mostly serves the Defense Department, is asking the Labor Department to scrap the proposal. The Waterford, Conn., company estimates it would spend about $120,000 a year to hire the workers, process data tracking disabled employment and pay for legal challenges it expects would result from the rule.

A Boeing spokesman said the company is studying the proposal, and Lockheed Martin declined to comment on what it told the Labor Department in response to the proposal.

FirstBank Holding Co. of Lakewood, Co., says the rule would burden the company with paperwork and reporting requirements without actually increasing the number of disabled workers it employs. "Individuals with disabilities are not even applying for our open positions," the company wrote to the Labor Department. FirstBank asked the department to scale back the proposal but favors its requirement that employers advertise job openings with specific organizations that target the disabled.

Kevan Johnson, an employment consultant with REACH of Dallas, a nonprofit that helps disabled people lead independent lives, said stronger regulations are needed because severely disabled workers are being overlooked by contractors "who think they can't do the job." Mr. Johnson said employers might not be aware of workplace accommodations they could make to enable a disabled person to do their job. "There's an education process," he said.

Some employers worry that, in seeking out disabled workers, they would end up violating the Americans with Disabilities Act of 1990, which they say prohibits employers from asking disability-related questions before hiring someone. There is also concern that such inquiries would make contractors vulnerable to lawsuits from people alleging their disclosures were actually used against them.

Labor's Ms. Shiu said the requirement would be legal because contractors would be inviting people to "voluntarily self-identify" a disability to improve data collection. Companies would have to invite employees to do the same through an annual, anonymous survey.

Tuesday, February 28, 2012

New book by Fred Pelka offers oral history of disability rights movement

From the Amherst Bulletin in Mass.:

Today, most people don't think twice about the accommodations that give people with disabilities greater access to the public sphere. Wheelchair lifts on buses and vans. Ramps and railings outside buildings and curb cuts on streets. Sign language interpreters in courtrooms. Children with physical or developmental disabilities in regular classrooms.

But 50 and 60 years ago - or even more recently - that was hardly the case. There were separate schools for children with disabilities, with grim, Dickensian names like Boston's Industrial School for Crippled Children. People with mental illness were locked up in facilities more like jails than medical institutions. Using a wheelchair restricted access to most public buildings and transportation.

The changes didn't come by accident. It was the concerted efforts of activists who, taking a page from the civil rights and womens' movements, slowly but surely built a grassroots effort to convince politicians and American society to take down the barriers to the disabled.

It's an epic story that Northampton writer and researcher Fred Pelka has chronicled in his new book, "What We Have Done," an oral history of the disability rights movement, recently published by the University of Massachusetts Press.

Based on interviews with dozens of activists whose work, bit by bit, culminated in the passage of the federal Americans with Disabilities Act (ADA) in 1990, "What We Have Done" represents years of work for Pelka as well. He first contemplated the project back in the 1990s but didn't get a book contract from UMass Press until 2004. At that time he also was awarded a $35,000 Guggenheim grant for the work.

But juggling his research with other freelance writing, he missed a few deadlines and wondered if he'd see the book through.

"One of the feelings I sometimes had ... was that I was doing this book 10 years too late," Pelka, 57, said during a recent interview. "Some of the people I interviewed were quite elderly, and I needed to get their stories."

But in the end, he says, "The people at UMass Press were great - they were really dedicated to making this the best book possible and encouraging me to keep going on it."

Pall of silence

The rights of disabled individuals is a subject Pelka's been closely connected to. He previously had written a one-volume history of the disability rights movement for ABC-CLIO, a reference book publisher, and before that he'd worked for many years as a personal care attendant for disabled clients in the Boston area and in the Valley. His longtime partner, Denise Krauth, who has multiple sclerosis and has used a wheelchair since the 1980s, has long been active in disability issues and at one time chaired the Governor's Commission on Accessible Transportation.

Pelka himself received speech therapy as an elementary school student, which he says he enjoyed and greatly benefited from. But the therapy, he adds, "had this weird sense of shame attached to it, and later I wondered, 'Where did that come from?' " In retrospect, Pelka says, it might have been that the speech therapy students never had a regular place for their sessions but were shunted to whatever space was available - including the school custodian's closet on one occasion.

As well, Pelka's older brother lost a leg when he stepped on a mine in the Vietnam War. After that, Pelka says, some extended family members and friends stopped showing up at their house, as did the minister of their church, who Pelka says had previously railed against war protesters.

"I knew other kids who had lost an older brother or had someone wounded in the war, and the same thing happened," he said. "There was this kind of pall of silence around the issue [of disabled young veterans]. Part of that was the politics of the time, but there also seemed to be this sense that damaged people ... should be out of sight, out of mind."

Along with legislative milestones like the ADA, "What We Have Done" chronicles the sea change that took place between the 1950s and '60s and 1990, as the rationale for segregating disabled people from the rest of the population was eroded. Many of those interviewed, particularly the most elderly, recount stories of being denied access to public schools, or being closed off from contact with other students if they were in a public school. One woman said her only contact with the "regular" kids came during an annual Halloween parade.

"Every Thursday they would have 'handicapped kids' go to the library," recalls Diane Coleman, today the director of a disability rights center in Rochester, N.Y., who had problems walking as a child. "It felt like they cleared the corridors so that no one could see us."

The book contains harrowing stories from people who endured harsh treatment, such as shock therapy - even as children - for mental illness, or spent time in massive facilities like the former Willowbrook State School in New York City. In the 1960s and '70s, Willowbrook gained national infamy as an overcrowded warehouse for mentally ill and handicapped children who suffered profound neglect, as well as physical and sexual assaults, at the hands of ill-trained staff.

The book also offers portraits of seminal figures of the disability rights movement, like Mary Lou Breslin, a California educator who co-founded the Disability Rights Education and Defense Fund, a leading national center on disability rights issues. Others include Judith Heumann, another California woman who organized sit-ins by disability activists at federal Health, Education & Welfare offices in 1977. As a result of the activists' efforts, federal civil rights legislation was extended to include people with disabilities,and Heumann went on to advise the Clinton and Obama administrations on disability issues.

Closer to home, the book includes interviews with people like Frederick Fay, a founder of the Boston Center for Independent Living in the 1970s, where Pelka spent time working. Started originally in Berkeley, Calif., the independent living model - taking disabled people out of institutions and giving them the means to live on their own, with help as needed - spread across the country, including to Amherst, home of the Stavros Center for Independent Living.

"What We Have Done" shows how the separate tendrils of disability issues began to coalesce into a national movement. People in different situations - from wheelchair users to people who are mentally ill or blind, to those who are deaf or hard of hearing - started to find common ground in their fight against discrimination. Challenges to individual schools, workplaces and medical facilities merged into court cases and demonstrations with national impact.

"This is the pre-Internet era, and you're talking about people who historically are poor, marginalized and isolated," Pelka said. "It's an amazing story. I mean, how do you organize a rally to protest the fact that there's no accessible public transit when there's no way for anyone to get to the rally? I was fascinated by the connections people developed as they built this movement."

Long battles

Pelka did not do all the interviews for the book, as he says the travel costs were prohibitive. While he generally interviewed people in New England and Washington, D.C., he relied on transcripts from an extensive oral history project maintained by the Bancroft Library at the University of California Berkeley.

"They shipped thousands and thousands of papers to me - they're all in boxes in my basement," he said with a chuckle.

Though a few people he talked to were hesitant at first to participate in the project, he says most welcomed the opportunity to tell their stories - and those stories, which spoke of long battles against physical and psychological pain and societal barriers, ultimately helped give him the energy and perseverance to finish his book.

Pelka, who also has published a book with UMass Press about a wounded Union soldier from the Civil War, said enforcing all the tenets of the ADA is an ongoing battle. His book, he believes, points to a bigger question: how to confront the aging of the boomer generation. He says there will be tens of millions of people who will likely have some degree of disability in the next 20 years.

"How are we as a society going to meet those needs? It's a question we need to ask.

USDA expands farming for disabled Americans

From Western Farm Press:

Responding to the needs of a growing population of farmers and ranchers living with a disability, the U.S. Department of Agriculture (USDA) awarded 23 grants to organizations to help thousands of people with disabilities continue their chosen agricultural professions. USDA's National Institute of Food and Agriculture (NIFA) awarded the grants, totaling $4.1 million, through the AgrAbility program.

"Thanks to the hard work and dedication of all Americans devoted to agriculture, U.S. agriculture is a bright spot in our economy and provides a livelihood for 1 in 12 Americans," said Dr. Catherine Woteki, USDA Chief Scientist and Under Secretary for Research, Education and Economics. "Nearly 2 million individuals working in agriculture in the United States live with a disability that affects their work and daily life. The AgrAbility program provides these producers with the training and resources they need to remain profitable, to maintain their quality of life, and to continue to contribute to our nation's supply of food, feed, fiber and fuel."

NIFA awarded the funds to land-grant universities that have joined with nonprofit disability organizations to address the specialized needs of American farmers and ranchers with disabilities. Projects include educating professionals on how to assist those with disabilities and directly training disabled agricultural workers. Past AgrAbility projects have improved customers' financial stability, access to life activities and the ability of states and regions to deliver timely services to those with disabilities.

Since initial funding in 1991, NIFA has awarded grants to more than 35 states resulting in on-farm assistance to more than 15,000 farmers while educating thousands of professionals on how to accommodate those with disabilities in agriculture. The typical award provides up to $180,000 per year for up to four years to qualifying universities.

In addition to the state project grants, one national grant provides additional support for a National AgrAbility Project, which is directed jointly by Purdue University and Goodwill Industries. These national partners joined to provide technical assistance and professional training for the state projects, produce resource materials and distribute information related to the project. For more information, visit

Fiscal Year 2011 grant recipients are:

1. University of Arkansas, Little Rock, Ark., $180,000
2. University of California, Davis, Calif., $180,000
3. Colorado State University, Fort Collins, Colo., $180,000
4. University of Delaware, Newark, Del., $180,000
5. University of Georgia, Athens, Ga., $180,000
6. Purdue University, West Lafayette, Ind., $180,000
7. Kansas State University, Manhattan, Kan., $180,000
8. University of Kentucky, Lexington, Ky., $180,000
9. University of Maine, Orono, Maine, $165,716
10. University of Minnesota, Minneapolis, Minn., $180,000
11. University of Missouri, Columbia, Mo., $180,000
12. University of Nebraska, Lincoln, Neb., $180,000
13. North Carolina A&T State University, Greensboro, N.C., $179,975
14. Ohio State University, Columbus, Ohio, $180,000
15. Oklahoma State University, Stillwater, Okla., $180,000
16. University of Tennessee, Knoxville, Tenn., $180,000
17. Texas AgriLife Extension, College Station, Texas, $178,002
18. Utah State University, Logan, Utah, $180,000
19. University of Vermont, Burlington, Vt., $180,000
20. Virginia Tech, Blacksburg, Va., $180,000
21. West Virginia University, Morgantown, W.V., $180,000
22. University of Wisconsin, Madison, Wisc., $180,000
23. University of Wyoming, Laramie, Wyo., $172,153

Through federal funding and leadership for research, education and extension programs, NIFA focuses on investing in science and solving critical issues impacting people's daily lives and the nation's future. For more information, visit

Pakistan, England pioneer inclusion of disabled players in cricket

From The National in Arab Emirates:

The sight of Matloob Qureshi (pictured) at the crease would please any cricket connoisseur. There is a lazy elegance to his batting. He looks unhurried with his faultless footwork and his timing is exquisite as the ball flies off his bat. That he does this with only one hand amazes everyone who has watched him.

"The way he is striking the ball, it doesn't look like he is playing with the use of only one hand," said Haroon Lorgat, the chief executive of the International Cricket Council (ICC). "It is amazing."

Lorgat's remarks came after watching Qureshi bat during the recent series between the disabled cricket teams of Pakistan and England in Dubai. The contest, the first of its kind, has brought many such amazing talents to the fore.

Pakistan's Farhan Saeed, who was struck by polio at the age of two, bowls medium-pace on crutches; England's Callum Flynn, voted Britain's Kindest Kid last year, has battled bone cancer and plays with a titanium knee.

Hasnain Alam lost his right foot in a mine blast while serving in the Pakistan army, but that failed to diminish his love for cricket. Jahanzaib Tiwana was born with a leg deformity, but bats in the manner of his idol, Shahid Afridi, and once smashed a 36-ball 98.

"In short, it has been indescribable," Lorgat said.

He revealed that physical disability cricket will be on the agenda at ICC's next Chief Executives' Committee meeting.

"It is a part of the game that perhaps we don't pay as much attention to as it is not as flashy as the big boys when they play their first choice teams or female cricket in recent times," he said.

"But credit to those who have persevered and the management of the two teams deserve an enormous amount of credit. The teams have opened our eyes by displaying the skill, talent and passion they have over the past two weeks and the players deserve credit for playing the game in the spirit in which they have."

These words must be music to the ears of Saleem Karim and Ian Martin, the two men whose untiring efforts led to the first series between two national teams of physically disabled players, where both line-ups are recognised and endorsed by the governing body of cricket in their country.

"I have brought disabled cricket to this stage and only I know how I have managed it," said Karim, the Pakistan captain, who formed a team of disabled cricketers in 2007 and has been working since to get recognition for it. He spent from his own resources to bring the team to Dubai for this series.

"Now I hope there will be more support. These players have shown they are not inferior to any able-bodied person in any way."

"This is a massive breakthrough for disabled cricket," said Martin, the England Cricket Board's national disability manager.

"Being able to bring two sides to a fantastic facility, with both sides being recognised by the governing bodies of cricket in each country, it's a massive breakthrough. I really hope it will encourage other countries to get involved in disability cricket.

"What this series will do is evidence the possibilities and the opportunities that cricket presents for people of all types of disabilities to come and get involved in sports at the highest level.

"People with disabilities are playing sport all over the world, but up until now there hasn't been a pathway for cricketers. So what I hope this series will do is show to the world that people can choose cricket as a sport that they can play internationally."

The thought of creating a team for physically disabled cricketers came to Karim's mind early in his life, when he was regularly left out of a team by friends, in favour of able-bodied players.

"When you are a kid, playing on the streets, you know how emotionally charged those matches are and you want to be part of it," said Karim, who suffers from polio. "But for me, they would always pick another kid, even if he was not as good at cricket as me, simply because he could field.

"I would feel very disappointed because I wanted to play those matches. Then I started thinking that if all the players were like me, then I would not have to sit out."

Karim, 47, sat on that idea for two decades, first concentrating on his studies and then raising a family. But in 2007, the cricketing bug returned, and he discussed the idea with one of his friends, Amiruddin Ansari, who is now the honorary secretary of the Pakistan Disability Cricket Association.

They decided to hold trials, advertising the event in newspapers. They waited for more than two hours without anyone showing up. Disappointed, they were about to leave when the first player walked in. Gradually that number reached 11 - enough to form their own cricket team.

"It's just God's grace that we were able to find a wicketkeeper among those first 11, a few batsmen, an off-spinner and a leg-spinner, and a fast bowler," said Fareeduddin Ansari, one of the Pakistan coaches. "So we had a proper team on the first day itself."

Pleased with their efforts, Karim and his team started looking for sides to play against. There were no other disability cricket teams around, so they started against the youth teams of different clubs and academies.

"Within six months, we were really organised," Karim said. "Inside a year, we had disabled teams in eight different cities. Now we have 12 teams and every team has anywhere from 50 to 80 cricketers with them.

"So I salute them. It is due to their courage that we are seeing this series."

Tiwana is one of the players who came to disability cricket after learning about it through the newspaper. Immediately, he started "dreaming about playing on the international stage, in the best stadiums of the world with people watching us in awe and amazement".

He was doing well at the junior level in his native Multan and decided to go for the regional trials. He emerged the second highest run-scorer in those trial matches, but was turned down because of his disability.

"We were having regional [Multan] trials for the Under 19 team and I went there, but Manzoor Elahi [a former Pakistan international], he turned me down because I was disabled. 'You cannot play alongside normal players', he told me.

"He told me the PCB [Pakistan Cricket Board] cannot spend a lot of money on me because of my disability. 'No doubt you are a good player,' he told, 'but the PCB will not spend any money on you. Don't get disheartened and keep playing'. I was the second-highest run scorer for Punjab at that time, during the trials. I played as a keeper-batsman. I took around eight catches and five stumpings as well. I was really happy with my performance and thought I would get a chance, but felt really disheartened not to be selected.

"I left cricket after that and started focusing on my studies."

After his rejection at the trials, Tiwana's mother, who never approved of his cricket, took his kit bag away, urging him to focus on his studies. His late father and his elder brother were both lawyers and his mother wanted Tiwana to follow in their footsteps.

"I did not like that, but now I believe a lot of good came out of my mother's actions," Tiwana said. "During that period, about 18 months, my full focus was on my studies and that has really helped me. I now I have a degree."

Tiwana is now a law graduate and is preparing for the judiciary exams. He wants to be a civil judge in the future, but for now, disability cricket is his focus and he has got his mother's approval as well.

"I was disabled by birth," he said. "I had an operation, but it was not successful. When I was growing up, the other children would not allow me to play because I was considered weak because of my handicap.

"But I never got discouraged. I kept playing whenever I got an opportunity. Then, when the Pakistan Disabled Cricket Association [PDCA] adopted me, when we started playing matches and appearing on TV, people started coming to my house to call me to play. They wanted me to play for their clubs, alongside normal cricketers, and gradually I became a pride of their teams. Without me, they would not play.

"So I am really thankful to the PDCA for bringing us to this level, introducing us to the world. They allowed us to show we can play like able cricketers."

Saeed faced similar rejections, but he is now a star in his town, Korangi, and youngsters come to him for bowling tips.

"There has been a lot of positive changes in my life since I started playing cricket for the disabled team, especially where I live," said Saeed, whose favourite cricketer, rather surprisingly, is India's Ishant Sharma. "Earlier, nobody would respect us or pay any attention to us. They would look at me and think I cannot play because I am a handicap.

"But since I have come into this disabled team, the same people come to me asking for tips on bowling. They want me to teach them. They want to know how I bowl because I am a respected bowler now. They say, 'we saw you on TV today, or in the newspaper'.

"So the attitudes have changed. People love watching us and they enjoy our cricket.

"Some people when they see me bowling with crutches, they feel really concerned; they tell me, 'you will fall down'. But I have full confidence in myself and the way I bowl, it's unbelievable."

Watching Qureshi bat leaves you with a similar sense of disbelief. Having lost his right hand in an accident at the age of five, the Multan native got hooked on cricket after watching Wasim Akram on television. Later, Mohammed Yousuf became his favourite and you can see where his batting inspiration comes from.

"My father had a shop in the market and I had come there from school," Qureshi said. "I was going to the ground to play. Just ahead, a truck was taking a turn and I was hit by the rear bumper. I fell down and the truck drove over my hand.

"The hand was completely crushed. The doctors tried their best to save it and they kept trying for months, but the hand kept turning black and they had to eventually cut it off.

"I was just a kid then and the craze for cricket came much later. I used to love watching Akram bat and bowl, and that really hooked me on to cricket. I like Mohammed Yousuf a lot as well and I used to watch him a lot on TV. He is also one of my favourite players, so I guess I just try to bat like him."

Like Saeed and Qureshi, there are many inspiring tales on the England side as well, but none as stirring as that of 17-year-old Flynn.

Growing up in Leigh, Lancashire, Flynn was a talented cricketer and dreaming of playing at the professional level. But on his 14th birthday, he was diagnosed with a rare form of bone cancer. Over the next two years, he underwent a gruelling course of chemotherapy and major titanium knee replacement surgery.

"All the players' have got different stories and they are all inspirational in their own different ways," Martin said. "But I think the one that stands out for me is Callum Flynn. He is 17 years old now and he was diagnosed with bone cancer when he was 14. He's been through the treatment.

"He's had a complete knee replacement and here he is, less than a year after finishing his treatment, representing England abroad.

"It's a phenomenal achievement. A very brave lad and hopefully his story can serve as an inspiration to others with similar disabilities."

Flynn has also been busy raising money for the Bone Cancer Research Trust, collecting £15,000 (Dh87,450) last year through different initiatives. The gesture saw him awarded Britain's Kindest Kid title last year, run by the Charities Aid Foundation and 5 News.

"I burst out crying when I found out I got cancer, it was the worst moment of my life," Flynn said. "But when I found out I was playing for England, it was the best time of my life. I cannot put it into words.

"Two years ago, I never thought I would play cricket again and then when I did start playing again, I just always wanted to play for England and now I am and wearing the Three Lions. It's just unbelievable."

Both Martin and Flynn now hope disability cricket will only grow after this groundbreaking series, and eventually lead to a world championship.

"The challenge has been, I think, getting the authorities to realise that people with these types of disabilities can play a very high standard," Martin said.

"Through this series that we've got here, we've been able to display that at the highest level. That's been the beauty of this series; it's been able to showcase the abilities these players have.

"In the short term, what I would like to see is this series again perhaps in two years' time, with the addition of another country or maybe two.

"But certainly in the long term, it would be to have a World Cup of physically disabled cricket."

British study: Disabled adults more likely to be victims of violence

From ABC News. To help stop disability hate crime in the UK, visit this website,

Adults with disabilities are more likely to be victims of violence than adults who are not disabled, according to a new study published online in The Lancet.

Mentally ill adults are at four times higher risk for violence, and adults with intellectual impairments are also particularly vulnerable.

A team of researchers from the United Kingdom's Liverpool John Moores University and the World Health Organization analyzed 26 studies on violence against disabled adults, with more than 21,000 participants from around the world.

"About 3 percent of individuals with non-specific impairments [eg, physical, mental, or emotional, or health problems that restrict activities] will have experienced violence within the past 12 months, rising to almost a quarter of people with mental illnesses," said lead author Mark Bellis of Liverpool John Moores University in a press release.

The violence, he explained, was either physical, sexual or by an intimate partner.

Experts not involved in the research say the study calls attention to the plight of many disabled adults who become targets for a variety of reasons.

Jack Levin, professor of sociology and criminology at Northeastern University in Boston, said the disabled often suffer in silence.

"It happens all too often, but we have ignored a very serious issue," he said.

He cited the case of 30-year-old Jennifer Daugherty as an example of what a surprisingly high number of mentally ill and intellectually challenged adults suffer.

Daugherty, described by her stepfather as having the mental abilities of a 12 to 14-year-old was allegedly tortured and murdered by a group of six people in western Pennsylvania in 2010. Prosecutors say a 17-year-old girl served as the group's ringleader and saw Daugherty as a romantic rival.

The group was accused of abducting Daugherty, beating her, forcing her to consume human waste and bleach, then forcing her write a suicide note before stabbing her multiple times.

Levin said that while people view what happened to Daugherty as particularly heinous, most people don't see it for the hate crime that it is. Hate crimes, he explained, are more likely to be viewed as crimes against a certain race or against people of certain sexual orientations.

The U.S. Department of Justice found that disabled adults were victims of twice as many violent crimes as adults who are not disabled, and about 15 percent of these victims believe they were targeted as a result of their impairments.

"There are a number of reasons why adults with disabilities are more vulnerable to violence," said Dick Sobsey, professor emeritus at the University of Alberta in Edmonton, Canada.

"Many of them are more vulnerable or may have limited communication abilities, either by impairment or by situations they are in," he said.

Levin added that they may not be able to fight back or to report the incidents to the authorities.

The disabled, especially those who have cognitive impairments, are often viewed as non-human.

"They have a deficit or a defect, so they can be more easily treated like animals or subhumans," said Levin, also the author of "The Violence of Hate."

Many people with disabilities are also often dependent on others, making them vulnerable to people who may feel the desire to exert power over them, Sobsey added.

Perpetrators may also be exacting revenge on people with disabilities, Levin said. Since the passage of the Americans with Disabilities Act (ADA) in 1990, which prohibits discrimination based on disabilities, people may feel that the disabled get special privileges.

Sunday, February 26, 2012

Documentary Short "Saving Face," about reconstructive surgery on survivors of acid attacks in Pakistan, wins Academy Award

An interview with Daniel Junge in Westword in Colorado on Feb. 24:

This isn't Daniel Junge's first trip to the Oscars. The Colorado-based filmmaker was nominated for an Academy Award in 2010 for his documentary The Last Campaign of Governor Booth Gardner; this time he's nominated in the Documentary Short category for Saving Face, a film that follows a Pakistani plastic surgeon dedicated to performing reconstructive surgery on women who've been attacked with acid. In advance of his trip to Los Angeles for Sunday's Academy Awards ceremony, we caught up with Junge and talked with him about traveling to Pakistan, hobnobbing with celebrities, and the Colorado film industry.

Westword: How did you learn about the acid attacks in Pakistan?

Daniel Junge: Well, I knew about it in the back of my head, but I wasn't intending to make a film on it. But I was listening to BBC World Radio and I heard an interview; there was an acid attack in the streets of London on an aspiring model there, Katie Piper. It was a very big news story three years ago, and she mentioned that her personal hero was her surgeon Dr. Mohammad Jawad. And when I heard that I thought, "Mohammad Jawad, that doesn't sound very Anglo." So I called him up out of the blue at Chelsea Hospital and I said, "Are you aware of the incidents of acid attacks in South Asia and in the Muslim world?" And he said, "I know about it, I've been going to help some of these women and I'm going in six weeks. Do you want to come?" And that's how the adventure began.

What was the process of making the film?

I should tell you that the process was made much easier by having a great Pakistani partner on the ground. I teamed up with, in my mind, the country's best filmmaker: Sharmeen Obaid-Chinoy. She's an Emmy-winning filmmaker, and having a partner on the ground there, especially a woman who could go and shoot some of the most sensitive stuff without me, was just great -- not only for safety concerns but for the comfort of the subjects. I think it gives the film an intimacy in rural Pakistan that I wouldn't have been able to do myself.

What made you want to tell this story?

Most of my films have had a strong social justice component, and hopefully they've helped implement change. This was a not terribly well-known phenomenon, an absolutely horrible phenomenon that we felt shedding some light on it might help. And also knowing that it's such a captivating subject, what's happened to these women is so horrific and what Dr. Jawad is doing with his reconstructive surgery's just a natural story and makes for a great film and hopefully is going to help facilitate change.

What do you hope people get out of watching the film?

First of all, I think that when people hear of the nature of the subject, they think it's all doom and gloom and horror, and of course it is, it's extremely dark subject matter. But I hope that when people watch the film, they see Pakistanis addressing a Pakistani problem, and moreover, they see a Pakistani filmmaker, my partner Sharmeen, documenting Pakistanis addressing this problem. I want viewers to come away with a sense of hope and empowering the institutions which are fomenting change, rather than just think it's an unchangeable situation.

What can viewers do to take action?

We are building an extensive outreach campaign -- I think it's a vital part of social justice filmmaking, and it's going to be my strongest outreach campaign yet. My wife is the outreach director and she has already gotten some nice grants and started building the website, the educational materials and the awareness campaign. That's There's a number of ways that viewers can become engaged after seeing the film. I'm really excited about that.

U.S. prisons dealing with growing number of aging inmates with dementia

Beginning of a story in The NY Times. In the picture, James Evers, an inmate at the California Men's Colony, shaves Joaquin Cruz, 60, a convicted killer with Alzheimer's disease.

SAN LUIS OBISPO, Calif. — Secel Montgomery Sr. stabbed a woman in the stomach, chest and throat so fiercely that he lost count of the wounds he inflicted. In the nearly 25 years he has been serving a life sentence, he has gotten into fights, threatened a prison official and been caught with marijuana.

Despite that, he has recently been entrusted with an extraordinary responsibility. He and other convicted killers at the California Men’s Colony help care for prisoners with Alzheimer’s disease and other types of dementia, assisting ailing inmates with the most intimate tasks: showering, shaving, applying deodorant, even changing adult diapers.

Their growing roster of patients includes Joaquin Cruz, a convicted killer who is now so addled that he thinks he sees his brother in the water of a toilet, and Walter Gregory, whose short-term memory is ebbing even as he vividly recalls his crime: stabbing and mutilating his girlfriend with a switchblade.

“I cut her eyes out, too,” Mr. Gregory declared recently.

Dementia in prison is an underreported but fast-growing phenomenon, one that many prisons are desperately unprepared to handle. It is an unforeseen consequence of get-tough-on-crime policies — long sentences that have created a large population of aging prisoners. About 10 percent of the 1.6 million inmates in America’s prisons are serving life sentences; another 11 percent are serving over 20 years.

And more older people are being sent to prison. In 2010, 9,560 people 55 and older were sentenced, more than twice as many as in 1995. In that same period, inmates 55 and older almost quadrupled, to nearly 125,000, a Human Rights Watch report found.

While no one has counted cognitively impaired inmates, experts say that prisoners appear more prone to dementia than the general population because they often have more risk factors: limited education, hypertension, diabetes, smoking, depression, substance abuse, even head injuries from fights and other violence.

Many states consider over-50 prisoners elderly, saying they age up to 15 years faster.

With many prisons already overcrowded and understaffed, inmates with dementia present an especially difficult challenge. They are expensive — medical costs for older inmates range from three to nine times as much as those for younger inmates. They must be protected from predatory prisoners. And because dementia makes them paranoid or confused, feelings exacerbated by the confines of prison, some attack staff members or other inmates, or unwittingly provoke fights by wandering into someone else’s cell.

“The dementia population is going to grow tremendously,” says Ronald H. Aday, a sociologist and the author of “Aging Prisoners: Crisis in American Corrections.” “How are we going to take care of them?”

Some prison systems are confronting that now. Many would like to transfer demented inmates to nursing homes, but their often-violent crimes make states reluctant to parole them and nursing homes reluctant to take them.

New York has taken the top-dollar route, establishing a separate unit for cognitively impaired inmates and using professional caregivers, at a cost of about $93,000 per bed annually, compared with $41,000 in the general prison population. Pennsylvania and other states are giving mental health workers special dementia training.

But some struggling prison systems, including those in Louisiana and California, are taking a less expensive but potentially riskier approach. They are training prisoners to handle many of the demented inmates’ daily needs.

“Yeah, they did something horrible to end up here,” said Cheryl Steed, a psychologist at the California Men’s Colony, where prisoners who help inmates with dementia are called Gold Coats because their yellow jackets contrast with the standard-issue blue. But without them, she said, “we wouldn’t be able to care for our dementia patients very well.”

After escorting Joaquin Cruz to an appointment, James Evers, a Gold Coat, was returning him to their adobe-colored cellblock when they encountered corrections officers strip-searching inmates for missing tools.

Mr. Cruz, 60, who barely recalls that he is in prison for killing someone who sold him fake cocaine, grew confused and resistant when guards tried searching him. “He has Alzheimer’s,” Mr. Evers managed to explain. “It’s not that he’s refusing to do what you’re asking.”

At the prison, shadowed by seacoast mountains, Gold Coats are paid $50 a month and have better knowledge of impaired prisoners’ conditions than many prison guards. Gold Coats, trained by the Alzheimer’s Association and given thick manuals on dementia, were the first to notice when Mr. Cruz began putting his boots on the wrong feet and “started pulling down his pants and going to the bathroom wherever he was,” said Phillip Burdick, a Gold Coat who is serving a life sentence for beating a man to death with a hammer.

Gold Coats report these changes, often at weekly support group meetings with Dr. Steed. They identify “different tricks and strategies to get guys to do what they need to do,” she said.

Saturday, February 25, 2012

Bolivia's disabled people clash with police over subsidies

from BBC News. A series of photos of the protest at Buzz Feed.

Dozens of disabled people have clashed with police in Bolivia during a protest calling for higher state subsidies.

Several protesters were hurt as they tried to break through a police cordon in the country's main city of La Paz.

Riot police used pepper spray to prevent the demonstrators from entering the presidential square.

The protesters - who had made a 100-day trek to La Paz - wanted an annual state subsidy of about $400 (£254). They currently receive about 30% of that.

The caravan of about 50 disabled protesters - many in wheelchairs or on crutches - covered more than 1,500km (932 miles), living off the charity of people they met on the way.

In La Paz, the demonstrators were met by the riot police, who blocked off a street towards the presidential square.

The protesters then tried to break through, hitting officers with sticks and crutches.

Domitila Franco, who uses a wheelchair, told the BBC she was struggling to make ends meet.

"It's very hard to be a person with a disability. Even our own husbands abandon us because they feel ashamed of us. I look after my four children alone, washing and ironing clothes for people, and doing whatever I can," she said.

Living with a disability in Bolivia is not easy, especially if you are poor, the BBC Mattia Cabitza reports.

Most buildings are not accessible to wheelchairs, and people with disabilities often cannot go to work or school, our correspondent adds.

Thursday, February 23, 2012

In California, police force's sloppy investigations leave abuse of disabled people unsolved

The first part of a California Watch story:

California has assembled a unique police force to protect about 1,800 of its most vulnerable patients - men and women with cerebral palsy, severe autism and other mental disabilities who live in state institutions and require round-the-clock monitoring and protection from abuse.

But an investigation by California Watch has found that detectives and patrol officers at the state's five board-and-care institutions routinely fail to conduct basic police work even when patients die under mysterious circumstances.

Most abuse cases simply are logged but never prosecuted, including the suspicious death of a severely autistic man whose neck was broken. Three medical experts said the 50-year-old patient, Van Ingraham, likely had been killed. But the center's detective, a former nurse who'd never investigated a suspicious death, failed to identify what - or who - had caused the fatal injury.

The police force, called the Office of Protective Services, often learns about potential criminal abuse hours or days after the fact - if they find out at all. Of the hundreds of abuse cases reported at the centers since 2006, California Watch could find just two cases where the department made an arrest.

The people they are sworn to protect have profound developmental disabilities and live in a different world from most Californians. Some patients have spent decades in the centers, from childhood to death. Some cannot form words and have IQ scores in the single digits.

Records indicate that caregivers have inflicted abuse on patients without facing prosecution. The precise number of times nurses, janitors or staff supervisors have been implicated is unknown - the state has censored thousands of pages of documents detailing the cases.

But federal audits and investigations by disability-rights groups, as well as hundreds of pages of case files and other data, show staff members allegedly involved in choking, shoving, hitting and sexually assaulting patients at the facilities. None of these cases were prosecuted.

California is budgeted to spend $577 million this fiscal year to operate the centers, or roughly $320,000 per patient. More than 5,200 people work in the institutions - roughly 2.5 staff members for each patient. The five centers are in Los Angeles, Orange, Riverside, Sonoma and Tulare counties.

In most other states, local law enforcement or state police take the lead in conducting criminal investigations at developmental centers.

Critics of the state Department of Developmental Services, which oversees the institutions and the Office of Protective Services, have said the tight-knit atmosphere between the in-house police and staff makes it difficult to create a separation between the investigators and the investigated.

In a few cases, caregivers and others with minimal police training have been hired to work as law enforcement in the same facility. The commander at the Lanterman Developmental Center in Pomona worked there as a primary caregiver. The force's police chief is a former firefighter at the Sonoma Developmental Center.

The police force also suffers from a convoluted chain of command, interviews and records show. Detectives cannot make arrests without checking with department lawyers in Sacramento. Local police must be informed when serious injuries or deaths occur, leaving law enforcement agencies pointing the finger of responsibility at each other.

"It seems like something is not working in California. And that's probably a major understatement," said Tamie Hopp, an official with the national organization Voice of the Retarded, who noted the volume of abuse cases in California, and the lack of prosecutions, is cause for alarm.

Over the past eight months, California Watch has provided state officials with the findings of its investigation, including inspection records, activity logs, interviews with family members, case files and data on suspected abuse cases.

Terri Delgadillo, director of the Department of Developmental Services, said her department has a zero-tolerance policy that includes reporting any injuries, even those remotely suspicious, to the state Department of Public Health. She said the department is committed to conducting thorough investigations.

"For the department, the priority is to make sure that we're doing the best job providing consumer safety and services," Delgadillo said in an interview. "And if there are issues that need to be addressed - and there's always room for improvement - we're looking to do that."

She has hired a consulting group, the Consortium on Innovative Practices based in Alabama, to review the methods and training of her police force. The nonprofit group was recommended by the U.S. Department of Justice, which issued a scathing critique of the department in 2006.

The department said that from January 2008 to last month, 67 developmental center employees were fired for "client-related" offenses. But officials declined to say how many of those, if any, were dismissed for abusing patients, where they worked or if any of them had been prosecuted.

Delgadillo also declined to comment on specific cases of alleged abuse or mistreatment at the developmental centers, citing patient privacy laws. Corey Smith, the former firefighter who is now police chief, said he was not permitted to speak with reporters for this story.

The developmental centers have been the scene of 327 patient abuse cases since 2006, according to inspection data from the California Department of Public Health. Patients have suffered an additional 762 injuries of "unknown origin" - often a signal of abuse that under state policy should be investigated as a potential crime.

At the state's five centers, the list of unexplained injuries includes patients who suffered deep cuts on the head; a fractured pelvis; a broken jaw; busted ribs, shins and wrists; bruises and tears to male genitalia; and burns on the skin the size and shape of a cigarette butt.

Timothy Lazzini, a quadriplegic cerebral palsy patient at the Sonoma Developmental Center, died in 2005 after he swallowed 4-inch swabs that shredded his esophagus. After his death, Lazzini's doctor and a pathologist concluded it was highly unlikely that Lazzini could have placed the swabs in his own mouth.

But records show detectives waited too long to start their investigation.

His death, and the slow response by the Office of Protective Services, has left Lazzini's family heartbroken and without a conclusive answer as to how he was killed.

"He is gone and they really haven't given us as a family the information that we need to be at peace," said Stephanie Contreras, Lazzini's sister. "There is no peace at all."

The rate of suspected abuse cases within the walls of the five institutions has risen - even as hundreds of developmentally disabled patients have been moved to group homes and smaller nursing facilities.

The patient population at developmental centers dropped by 12 percent from 2008 to 2010, state records show, but reports of abuse have increased 43 percent during those three years. Unexplained injuries jumped 8 percent in the same period.

Public health officials acknowledged the state doesn't keep a tally of the number of times caregivers have abused patients. That information is kept hidden from the public in individual case files.

Kathleen Billingsley, director of policy and programs for the Department of Public Health, said she didn't know whether inspectors were notifying law enforcement agencies when they uncover evidence of abuse. She said public health inspectors conduct thorough investigations separately from the police.

"If there is any cross between enforcement individuals at the state facility and the work we do, I am not familiar with that," Billingsley said.

The Los Angeles County district attorney's office, which oversees Lanterman, couldn't identify a single criminal case referred from the center's police force. District attorneys in Tulare, Orange and Riverside counties also reported no prosecutions for patient abuse in the past decade. Sonoma County refused to disclose its records.

On average, police in California solve about two-thirds of all homicides and about half of all aggravated assaults - or at least make an arrest and "clear" the cases. The clearance rate for the Office of Protective Services is unknown because the department keeps the information secret.

Tuesday, February 21, 2012

Britain's Nicky Clark becomes accidental activist battling disability hate crime

from The Guardian in the UK:

Nicky Clark (pictured) came to activism by chance, and discovered a knack for it. Had life turned out differently she might have been an actor, rather than a carer and an articulate disability rights campaigner: "It's been very organic, but I suppose I have always been someone who got cross," she says.

Clark's campaigning, powered by Twitter (@mrsnickyclark) and blogging, has included carers' rights, the invisibility of physically disabled actors, and the toxicity of disability hate speech. The last thrust her into the limelight last year, when she publicly took to task the comedian Ricky Gervais about his use of the word "mong" – with spectacular consequences.

Her experience of the brutal reality of everyday abuse came as her two daughters grew up. Lizzy, now 17, and an actor, has Asperger's; Emily, 14, has autism with learning disability and epilepsy. Strangers would come up to them in the street and vent their fury at Clark's "inconvenient" offspring, or her "lack" of parenting skills. People behind them in the supermarket queue would say: "That child needs a good slap," she recalls. Others would simply stare, point, or jeer.

"Hate crime always begins with hate speech," says Clark. The systematic bullying, ignorance and institutional neglect that, for example, led Fiona Pilkington to kill herself and her disabled daughter, began because that behaviour was "normalised", she believes, by the casual acceptance of disablist abuse.

When Gervais started to use the word "mong" on Twitter last year Clark, whose daughters had in the past been on the receiving end of the term, argued passionately that it was abusive (as a reference to Down's syndrome). Gervais argued that in its modern accepted usage it simply meant "idiot".

The debate went viral on Twitter and was picked up in the press. Clark got abusive tweets from hundreds of Gervais's 400,000 twitter followers. "I got bombarded for 10 days by people who thought I was Mary Whitehouse," she says. But she prevailed.

Gervais called Clark to apologise, and agreed to a Twitter interview with Clark in which he explained why he had changed his mind. "He was genuinely apologetic. He talked to me for an hour, he talked to Lizzy. His whole attitude was, 'I'm not going to use that word any more.'"

Clark then took on the writer Caitlin Moran, who used the word "retard" in her autobiography. Moran promptly apologised and had it deleted from the book's next print run. "It's not the language people use, it's how they respond to being asked not to use it. That's the real test of someone's humanity," says Clark.

The welfare reform bill is also in Clark's sights. She expects that her daughters will lose their disability living allowance. "We are lucky, my husband is working. But if it happened when he was unemployed for two years we would have lost the house."

Her latest project is a series of short films for the Guardian in which she interviews celebrities who are either disabled or carers: DJ Jo Whiley, actor Warwick Davis, Sally Bercow, the wife of the Commons Speaker, and former paralympian Lady Tanni Grey-Thompson. "Warwick and Tanni had amazing parents who said to their children, 'Get out there and do anything.' That's our job as carers," says Clark.

"Don't wrap your children in cotton wool: raise them right and let them go."

Pennsylvania Port Authority cuts threaten independence of people with disabilities

From the Pittsbugh Post-Gazette:

Allegheny County is reeling from the Port Authority's proposal to increase fares, reduce operating hours and eliminate bus routes as a means to address a projected $64 million deficit in the upcoming fiscal year. Part of that proposal is a 35 percent reduction to ACCESS, the paratransit program for people under 65 with disabilities.

If approved, service cuts scheduled to begin Sept. 2 threaten to squelch the independence that many people with disabilities have worked hard to attain and that the community champions. Further, the cuts would dismantle a 32-year-old system of accessible transportation that is lauded as one of the most efficient and effective in the nation.

Under the proposal, service for the county's 4,500 ACCESS users under age 65 would be limited to the minimum requirements of the Americans With Disabilities Act -- that is, all rides would start and end within three-quarters of a mile of an operating bus line. With 46 bus routes out of 102 on the chopping block this year, the proposed ACCESS service map omits a substantial portion of Allegheny County. Currently, ACCESS picks up and takes riders anywhere within the county.

Nearly 1,300 ACCESS riders would lose transportation service because they live outside the service area. The remaining riders who live within the service area would lose some transportation because hundreds of destinations -- workplaces, medical facilities, shopping areas, community colleges and more -- are not on the map.

Karin Thum, 34, (pictured) would lose service completely. She moved from eastern Pennsylvania in 2009 to live at The Gatehouse, a residential program in Marshall operated by the Spina Bifida Association of Western Pennsylvania to help young adults transition to living on their own. Ms. Thum uses ACCESS for a wide range of activities, including transportation to her volunteer job at a hospice center.

Ms. Thum and her fiance, John Fitzgerald, 24, also a Gatehouse resident, plan to move to their own apartment in May and would like to remain in the Wexford area where their jobs are but which is not included on the new service map. "We rely on ACCESS," Mr. Fitzgerald said. "We wouldn't be able to go anywhere without it."

While fare increases and reduced hours concern ACCESS users, the drastic change in the service area has people most alarmed. People like Jeff Hladio, 30, who would not be able to ride from Bridgeville to his job at the Pennsylvania National Guard facility in Coraopolis.

Or Matthew Novosedliak, 44, who would lose his transportation from Ross to his job at the VA Medical Center in Aspinwall.

Or Ellen Goldfon, 56, whose ride from Munhall to her job in Oakland would be canceled.

Or the 25 residents of Allegheny Independence House in Wilmerding who say they would be cut off from jobs, doctors, therapies, shopping, Pirates games and family.

"They're taking our freedom away. It's as simple as that," said resident Jill Timmerman, 52.

Marilyn Golden, senior policy analyst and transportation specialist at the Disability Rights Education and Defense Fund in Berkeley, Calif., said Allegheny County's ACCESS system "stands out as a leader" among paratransit systems across the nation and is widely emulated. In 2005, ACCESS won the U.S. Department of Transportation's "United We Ride" award.

About 40 percent of ACCESS patrons are wheelchair users. Visual impairment, deaf-blindness and other conditions are also represented among riders. Nonpublic transportation options are few and vastly more costly than ACCESS, whose one-way fares will range from $3.45 to $5.25 if proposed increases take effect in June.

Agencies that assist people with disabilities say they can't fill the void. Sharon Wolf, director of development for the Spina Bifida Association of Western Pennsylvania, said the agency does not have the means to transport the 14 adults who live at The Gatehouse or the 30 other clients who receive housing services. "We can't replace ACCESS. Without it, we can't do what we do, which is to help people live and work in the community."

Jeff Parker, 58, chief operating officer for UCP/CLASS, was one of the first people to sign up for ACCESS in 1979. Mr. Parker, a wheelchair user, takes ACCESS to commute from Brighton Heights to UCP/CLASS's Swissvale center. He said his long experience with ACCESS illustrates the importance of preserving it.

"When I came to Pittsburgh in 1971 to go to Pitt, I could do everything in Oakland and that was fine. But when I graduated, I could not leave Oakland because there was no accessible public transportation. It was like living in a terrarium."

"Then ACCESS began and I could go anywhere I wanted. I got a job Downtown and a condo there. I met my future wife, who lived in Highland Park, and I could visit her."

"I see what ACCESS has done for me for over 30 years and I think it's very sad that other people might not have this opportunity in the future."

Paul O'Hanlon, 58, an attorney with the Pittsburgh office of the Disability Rights Network of Pennsylvania and a public transit user, said it's important that advocates do not split up into camps and work against each other. "Then we're less powerful as a force," he said.

"It's also important to clarify that the Port Authority is not the target," he added. "The state has not come up with the funding mechanism it has promised for years. What's lacking is the political will."

Monday, February 20, 2012

Time magazine Feb. 27 issue looks at how science, education are changing lives of children with Down syndrome

from Time magazine:

A little over a year ago, Abbie and Rick Smith had a baby they named Noah. They are still smarting from their obstetrician’s words after his birth. “She said, ‘I’m sorry,’” says Rick. “Everyone at the hospital treated us like it was a funeral.” Noah had Down syndrome, and neither his parents nor his doctor had been aware of his diagnosis before he was born.

Noah’s father had never known anyone with Down syndrome, but he was determined to show the world that Noah was a regular kid and not someone to be pitied or feared. Nor is he the stereotypical “sweet angel” that kids with Down syndrome are often made out to be; he gets pretty testy when he wants his bottle. On, Smith uploads a daily one-minute video of Noah doing his thing — going to the mall, going to physical therapy — and has garnered his son a pretty impressive following for a 1-year-old: Noah’s Facebook page has got nearly 13,000 fans. Says Smith: “There’s no ‘sorry’ in this house. The only thing in this house is celebration.”

In the Feb. 27 issue of TIME Magazine, we take a look at the difficult decisions that are playing out every day in this country as parents grapple — many of them during early pregnancy — with a diagnosis of Down syndrome, the most common chromosomal condition. The number of babies born with Down syndrome has been shrinking for at least two decades, and new, non-invasive prenatal blood tests that can be administered as early as 10 weeks — long before a woman even looks pregnant — have the potential to diminish their ranks further. Says Smith: “We are in a race against science.”

Yet it’s not so simple. Most parents, it goes without saying, would not want their children to have a handicap of any kind. “We want the best for our children,” says Ruth Faden, the director of the Berman Institute of Bioethics at Johns Hopkins University. “That’s a natural inclination. There is nothing wrong with saying, I’d rather my child not have this disability, as long as we don’t go from there to the view that people with disabilities are worth less.”

These days, thanks to early educational intervention and an emphasis on mainstreaming affected kids into typical classrooms, children with Down syndrome are living fuller lives than ever before. Institutionalization is no longer the fallback it used to be, and adults with Down syndrome are now living long past their mid-20s, getting married, holding jobs and, like John Anton, living independently.

Anton, 46, lives alone in an apartment in Haverhill, Mass. His mother still helps him pay his bills, and Fran Hogan, his “support adviser,” helps him manage his schedule and prepare for presentations he makes to groups that advocate for people with developmental disabilities. But Anton is independent, taking the train into Boston (he doesn’t drive because his reaction times aren’t quick enough), and volunteering at the Massachusetts State House, where he researches bills and gets the mail. ”I know I have very little limitations,” says Anton, who reportedly has a wicked wit. “I am capable of making my own choices. No one never, ever plays smart with me because I can get smart right back.

Life, for many people with Down syndrome, is good, says Smith, who received a life-changing phone call shortly after Noah was born. The director of the local Dallas support group was on the line. “Congratulations,” he remembers her saying, “there’s never been a better time in the history of the world to be born with Down syndrome.”

In India, woman with cerebral palsy denied permission to fly by SpiceJet

from NDTV in India:
KOLKATA, India -- In yet another instance of discrimination against differently-abled people, a woman was offloaded from a SpiceJet flight from Kolkata to Goa on Sunday.

Jeeja Ghosh (pictured), a teacher at Kolkata's Indian Institute of Cerebral Palsy and a frequent flier across the country and abroad, was offloaded because the pilot said she was not fit to fly. She has travelled alone in the past, but the pilot did not allow her to do it this time. (Comment)

The 42-year-old Jeeja Ghosh, who has lived independently in the UK as a student, is outraged at the incident.

Speaking to NDTV, Ms Ghosh said that such people "do not deserve to hold the job". She demanded that a show-cause notice be issued against such people.

Ms Ghosh said that other passengers "tried to convince the pilot to let me fly, but he was adamant".

Demanding action against the pilot, she has filed a complaint saying the experience was not just humiliating for her but for the entire community of differently-abled people who are, however, completely able to travel by themselves.

The airline later issued a statement apologising for the inconvenience caused to the passenger. The airline expressed regret for the incident, and said that the matter will be investigated and action taken.

Study: Autistic brains show changes months before symptoms

From USA Today:

Researchers have detected changes in brain development in autistic babies as young as 6 months old — half a year or more before parents typically begin to notice symptoms of the condition.

The results shed light on the fundamental differences in the brains of autistic children and could help lead to earlier detection and treatment, says co-author Geraldine Dawson, chief science officer at Autism Speaks, which helped fund the study in today's American Journal of Psychiatry.

Parents often begin to notice autistic symptoms in children at age 1 or 2, and kids typically aren't diagnosed until an average age of 5. Many parents perceive their child's symptoms appeared suddenly, a phenomenon that helped contribute to the now-debunked idea that autism is caused by vaccines, says autism researcher Christine Wu Nordahl, from the University of California-Davis MIND Institute, who wasn't involved in the new report.

The new study suggests that changes in the brain's communication pathways may take place silently, long before children begin to exhibit tell-tale problems communicating and socializing, or exhibiting repetitive behaviors, Dawson says. Other studies, such as a January article in Current Biology, have detected differences in how the brain reacts in the eye gazes of autistic babies as young as six to 10 months.

Eventually, researchers hope to be able to find a pattern in these brain scans that could allow them to spot which high-risk babies are likely to be autistic, and begin intensive behavioral therapy, which is most effective when begun early, Dawson says. Even if babies get into treatment by age 1½, Dawson says, "there has been a long period of time when the baby's brain has been developing abnormally," which could make the child's behavior harder to change.

"A lot of the kids in this study, they looked pretty good socially at six months," says senior author, Joseph Piven, director of Carolina Institute for Developmental Disabilities in Chapel Hill. "But by 12 months of age, it was almost as if someone had pulled the curtain down."

In the study, researchers performed brain scans, using MRIs, of 92 babies with an older, autistic sibling. Studies show that younger siblings of one autistic child have a nearly 20% risk of being diagnosed with the condition. Overall, about one in 110 American children has an autism spectrum disorder, according to the Centers for Disease Control and Prevention.

Researchers scanned the babies' brains at ages 6 months, 1 year and 2 years of age, creating three-dimensional pictures depicting changes over time in the brain's "white matter," which include bundles of nerve fibers and their protective coatings. These fiber tracks act like communication paths or highways between brain regions, Dawson says.

Twenty-eight children went on to develop autism. When researchers looked at their scans, they saw key differences in the way that these pathways developed, Piven says. At age 6 months, these pathways were more developed than those of typically developing children. By the time children were 2, the autistic kids' brain development had fallen behind.

"Their brains aren't organizing as rapidly," says first author Jason Wolff, also of the Carolina Institute.

Nordahl called the study "remarkable" and a "great first step." But she notes that the absolute differences among the children are small. The findings need to be repeated by other researchers before doctors can begin to create a reliable early detection system.

The study has other limitations, says Charles Nelson, a professor of pediatrics and neuroscience at Harvard Medical School. The findings would be stronger if researchers compared them to those of a control group of normal-risk children, who don't come from families with other autistic children. He questioned why 30% of the high-risk children were diagnosed with autism, a rate that's 50% higher than expected. Nelson also notes that it can be hard to definitively diagnose autism at age 2, and that a child's diagnosis can change over time.

Dawson says researchers still have many questions. She wonders, for example, if brain scans will spot differences in autistic brains even earlier than 6 months, and if the differences could even begin in the womb.

Autism Speaks is funding research into exercises that parents can perform with their babies to stimulate language and social development, in an effort to reinforce and strengthen those brain connections. In these exercises, whose results aren't yet known, she says researchers teach parents to play with babies in simple ways they hope will diminish the child's symptoms by "changing the course of brain development."

Saturday, February 18, 2012

British actress Dame Judi Dench has growing visual impairment due to macular degeneration

from The AP:

Actress Judi Dench is battling to save her sight.

The James Bond star said in an interview published Feb. 18 that she had been diagnosed with macular degeneration, an eye condition which can cause blindness, and that her eyesight was already so bad that she couldn't even read her own scripts.

The 77-year-old told the Daily Mirror that she was relying on friends and family to keep her up to speed with her lines.

"It's usually my daughter or my agent or a friend and actually I like that, because I sit there and imagine the story in my mind," she told the newspaper during an interview at a London hotel. "The most distressing thing is in a restaurant in the evening I can't see the person I'm having dinner with."

The Mirror didn't say exactly where or when the interview took place. Messages left for Dench's agent were not immediately returned Saturday.

Dench made her Shakespearean debut in 1957 at London's Old Vic and has since taken on a vast number of theater, film and television roles.

She won an Academy Award for her role as Queen Elizabeth I in "Shakespeare in Love" and is best known to international audiences as intelligence boss M in the James Bond series.

In Australia, blind Paralympian asked to leave restaurants, hotel with guide dog

From The Courier Mail in Australia:

A legally blind Paralympian has filed a complaint with the Human Rights Commission after being asked to leave two restaurants and a hotel because of her guide dog.

Equestrian Sue-Ellen Lovett of Dubbo (pictured) suffers from the hereditary eye disease retinitis pigmentosa, which has left her unable to see in one eye and with limited vision in the other.

She is classified as legally blind and has had a guide dog for 32 years.

Ms Lovett said she was asked to leave the three premises in the space of six hours, when she was in Picton - a rural town in Sydney's southwest - to buy a new horse with her dog Prada early in February.

"We were asked to leave them all because of my guide dog," she said.

"We were just asked to take the dog out and it was policy that no dogs were allowed."

She left after "a long and tedious argument".

Ms Lovett said she contacted the Human Rights Commission the following day and filed a complaint.

She said she relied totally on Prada, describing him as "my independence and my mobility".

Federal Disability Discrimination Commissioner Graeme Innes said he couldn't comment on specific cases but said it was unlawful to refuse a person entry to premises because of a guide dog.

"Refusing access to a person because they are travelling with a guide dog is a breach of the Anti-Discrimination Act," he said.

Ms Lovett competed in the 1996 Paralympian Atlanta Games, the 1999 Paralympian World Equestrian Games in Denmark and the 2000 Paralympian Sydney Games.

Picton is known for its historic cottages, sandstone railway viaducts and rich colonial heritage.

Thursday, February 16, 2012

Braille under siege as blind people turn to smartphones

From NPR:

Like a lot of smartphone users, Rolando Terrazas, 19, uses his iPhone for email, text messages and finding a decent coffee shop. But Terrazas' phone also sometimes serves as his eyes: When he waves a bill under its camera, for instance, the phone tells him how much it's worth.

Terrazas is blind, and having an app to tell bills apart can be a big help. For one thing, it means he doesn't have to trust clerks to give him correct change. Terrazas' daily life is full of useful technology like this, but it also has a downside: The more he uses technology, the less he uses Braille, the alphabet of raised dots that the blind read with their fingers.

"All through elementary school I used Braille," Terrazas says. "But when I got a laptop, I switched over and I went away from Braille. If you don't use it, you lose it. And that's what happened to me."

Terrazas uses software that reads out loud what's on his computer screen. These days, he's slowly re-learning Braille as a student at the Colorado Center for the Blind, south of Denver.

A new partnership between the Dollywood Foundation and the American Printing House for the Blind will now make it possible for Dollywood's Imagination Library to provide free children's books in Braille.
Children's Books

Free Books For Kids Now Also Available In Braille

The center puts a lot of effort into convincing students they still need Braille to be independent and employable. Director Julie Deden says technology is making the nearly 200-year-old writing system more accessible than ever. She shows off an electronic reader that's about the size of a paperback. Instead of having to lug around massive volumes of printed braille, this reader allows Deden to just sweep her fingers over little plastic nubs that rise and fall with each line of text.

Still, Deden worries that technologies like smartphones are also masking a serious problem — Braille illiteracy.

"People will let it go and they'll say: 'Well, you know, they're not really illiterate. They just don't really use Braille or print very much, but that's just because they're blind,' " she says. "I think that it's kind of an out, and technically they really are mostly illiterate."

Blind people choosing not to learn Braille is only one part of the equation. Chris Danielsen with the National Federation of the Blind says his group is increasingly butting heads with school districts trying to get out of federal obligations to provide a Braille teacher.

"They will tend to say, 'Well we have screen magnification software, we have all these tools available, and in light of that we don't think it's necessary for a blind person to be taught Braille,' " Danielsen says.

The federation estimates that today only one in 10 blind people can read Braille. That's down dramatically from the early 1900s. Jackie Owellet lost her sight as an adult, after an operation. Standing in a cafe in a Denver suburb, Owellet says learning to read Braille was the last thing on her mind.

"When am I ever going to use Braille? I'm never going to sit down and read a novel in Braille. You know, I'd rather download an audio book from iTunes," she says.

But last year, while taking classes for her yoga instructor certification, it became clear that having a mechanical voice reading off teaching notes didn't make for a very soothing yoga experience.

"So I realized there is a use for Braille," Owellet says. "I think everybody uses Braille in their own way. You know, I think that everybody finds what they need to use Braille for."

Advocates for Braille are hoping blind people like Owellet will continue to find enough reasons to keep their tactile system of writing alive, even amidst the growing chorus of computer voices.

Philadelphia hospital says it's sorry for handling of disabled girl's kidney transplant quest

From The Philadelphia Inquirer:

Children's Hospital of Philadelphia apologized Wednesday for the way it had communicated with the parents of Amelia Rivera (pictured), the 3-year-old disabled girl whose parents want her to have a kidney transplant.

In a statement released with the approval of the Riveras, the hospital expressed regret for how it had handled the situation.

Joe and Chrissy Rivera gained national attention in January when they said a hospital physician had recommended against such a transplant because of her mental disability.

Amelia suffers from a condition called Wolf-Hirschhorn syndrome, which causes a variety of developmental delays.

Hospital officials initially declined to comment on the case, citing confidentiality rules, but said that in general, they do not take intellectual ability into account when determining transplant eligibility.

But in the statement issued Wednesday, the hospital said: "As an organization, we regret that we communicated in a manner that did not clearly reflect our policies or intent and apologize for the Riveras' experience."

The statement was issued by Michael Apkon, the hospital's senior vice president and chief medical officer.

The hospital said that no decision had been made on whether the surgery would be performed.

"We are completely committed to the careful review of our processes and written material to ensure that we are sensitive to the needs of all families," Apkon continued, "including the specific needs of families of children with disabilities."

The Riveras, of Stratford, Camden County, also contributed to the statement.

"Despite an unfortunate encounter a few weeks ago, we hold the Children's Hospital of Philadelphia in high regard," Joe and Chrissy Rivera said. "We've had a three-year relationship with the hospital and are pleased with the care that Amelia has received. Our hope is that this experience will heighten the medical community's sensitivity to and support for the disabilities community."