After Children's Hospital of Philadelphia denies it, 'Team Amelia' backs kidney transplant for child with intellectual disability

From USA Today:

When Chrissy and Joe Rivera walked into a conference room at Children's Hospital of Philadelphia (CHOP) a few days ago, they thought they were going to see a slide show to help them start preparing their 3-year-old daughter Amelia for a kidney transplant.

Instead, a doctor and social worker told the Riveras that Amelia (pictured), who has a rare genetic disorder called Wolf-Hirschhorn syndrome, would not qualify for a transplant because she is "mentally retarded" and has "brain damage," Chrissy Rivera claimed in a blog post Thursday and in phone interviews.

The encounter shocked the New Jersey couple, but so did what happened next: The heavily connected online world of special needs parents kicked into high gear — and put one of the nation's top children's hospitals in a very hot seat. As of late Monday:

•More than 16,000 signatures have been added to an online petition at change.org demanding the hospital allow the transplant.

•Hundreds of complaints — along with some supportive comments for hospital staff — have been left at the CHOP Facebook page.

•More than two dozen bloggers, many of them parents of other children with disabilities, have put up posts supporting the Riveras and criticizing the hospital.

•Tweets using the hashtag #teamamelia continue to spread the story.

"That's the special needs community," says Sunday Stilwell, a Maryland blogger and mother of two boys with autism. She doesn't know the Riveras but started the change.org petition after reading the initial post and thinking "that could be my child," she says.

All the attention appears to have had an impact: Chrissy Rivera said Monday that she and her husband have been invited back to the hospital to discuss a transplant.

Hospital officials also have posted three responses on Facebook. The first, posted Friday, said, in part: "Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities. … We make all decisions regarding eligibility using a non-discriminatory approach, after a multidisciplinary assessment and discussion, which is the standard of practice throughout the country."

The second, put up Monday morning, said: "We hear you. We feel and understand your frustration, but we are unable to comment publicly on individual cases."

In an e-mail, hospital spokeswoman Dana Mortensen did say: "The term 'mental retardation' is not used in any information regarding appropriateness for transplantation. The term 'progressive irreversible brain damage' has been used, and we are currently reevaluating this language given the potential for misunderstanding of our intent."

That appears contrary to one part of Chrissy Rivera's story: She said in her blog post that the doctor who spoke with the family had two pieces of paper, with the words "mentally retarded" and "brain damage" highlighted in "cotton candy pink." Over the phone, Rivera said she and her husband were not allowed to take those papers, but she stood by her story.

The case recalls that of Sandra Jensen, a woman with Down syndrome who fought for, and got, a heart and lung transplant in the mid-1990s. Back then, many transplant centers flatly said people with intellectual disabilities could not handle the self-care regimens required of recipients. Jensen later died of complications, but her case spurred calls for hospitals to consider disabled candidates on a person-by-person basis.

A review published in 2006 found many people with intellectual disabilities fared well after kidney transplants. But 43% of child transplant programs surveyed for a study published in 2008 "always" or "usually" considered developmental delay in transplant decisions. One overriding concern: the scarcity of donated organs and the desire to choose candidates most likely to survive and thrive.

But Chrissy Rivera says the doctor at CHOP said he would not recommend the transplant even if a family member provided the organ, citing Amelia's "quality of life." And the social worker wondered who would give Amelia needed medications 30 years from now, Rivera says.

Donation from a family member or another living volunteer is the option now back on the table, Rivera says — and the only one the family expected to pursue. Citing privacy concerns, hospital officials declined to comment on plans for a new meeting.

The conference-room story Rivera shared is "potentially very disturbing," but probably not uncommon, says David Magnus, director of the Stanford Center for Biomedical Ethics. Without knowing the child's full medical history, it is impossible to know if she's an appropriate transplant candidate, he says.

But "it would be wrong for developmental delay to be the sole basis, morally wrong," and also illegal under the Americans With Disabilities Act, Magnus says. Magnus says he knows of at least one child with Amelia's disorder who had a kidney transplant at Stanford's Packard's Children's Hospital. He does not know how she fared. He points out that kidneys do not last forever in any recipient.

Chrissy Rivera, a 36-year-old high school English teacher, says she hopes Amelia will continue to receive care at CHOP, where she's been a patient since infancy. "We've had many positive experiences at CHOP," she says. "This was one doctor and one social worker."

But she says she and her husband, a real estate agent, understand Amelia could die in six months to a year if she does not get a transplant. Right now, Amelia, who also goes by "Mia," does not talk or walk, but does smile, play, roll around on the floor, interact with people and "love her two brothers to pieces," Chrissy Rivera says. "She's a magnet when people meet her."

The support from so many people who have never met her, she says, "is awesome."

Sundance Channel set to air reality show about four women who use wheelchairs

From Real Screen:

Sundance Channel has greenlit Push Girls, a 14-episode series from Gay Rosenthal Productions (Little People, Big World) following four dynamic women who, through accident or illness, have become paralyzed from the neck or waist down.

The series, announced during the winter TCA press tour, will follow the four women as they approach different stages of their lives, according to the AMC cable net. Angela is a model recently separated from her husband; multi-talented performer Auti is trying to have a baby with her husband at the age of 42; former competitive swimmer Mia is wanting to try swimming again for the first time since high school; and Tiphany is exploring ways to find her true calling in life.

Push Girls is currently in production and is slated to premiere in April of this year.

“The indomitable spirit of this series will give viewers permission to stare at a world that they may previously have been too polite – or too frightened – to explore,” said Sundance Channel general manager Sarah Barnett. “Sundance Channel allows the ‘Push Girls’ to convey the stark reality of their lives, something our broadminded audience will appreciate. We are remarkably fortunate to get to work with this exceptional group of women.”

“Watching the ‘Push Girls’ tackling life with spirit and confidence is not only inspiring but compelling,” added Rosenthal. “The show challenges perceptions about life in a wheelchair, giving the audience an honest, no-nonsense look into their world. It’s real, it’s outspoken and it’s from the heart.”

Marco Bresaz and Jonathan Grosskopf will serve as executive producers for Sundance Channel

New York City files notice it will appeal federal court decision that requires accessible cabs

From Capital New York:

On Dec. 30, a little more than a week after Governor Andrew Cuomo and Mayor Michael Bloomberg announced an agreement to bring taxi service to the outer boroughs while making taxis and livery cars more accessible to the disabled, New York City quietly filed notice that it would appeal a federal court decision that imposed an even more stringent requirement for disability access.

On Dec. 23, U.S. District Judge George Daniels ruled that the city, because it regulates the taxi industry and does not require medallion owners to provide "meaningful" access to the wheelchair-bound, violates the Americans with Disabilities Act.

As part of the decision, the judge called for “immediate and full compliance” with the A.D.A.

"The [Taxi and Limousine Commission] must propose a comprehensive plan to provide meaningful access to taxicab service for disabled wheelchair bound passengers," wrote Daniels. "Such a plan must include targeted goals and standards, as well as anticipated measurable results. Until such a plan is proposed and approved by this Court, all new taxi medallions sold or new street-hail livery licenses or permits issued by the TLC must be for wheelchair accessible vehicles."

In other words, New York City cannot sell any non-accessible outer-borough taxi permits until the judge says so.

In a sign that he may not consider the governor's accessibility plan, vague though it is, sufficient, the judge also said, in a footnote: "The recent legislation signed by Governor Cuomo providing for a greater number of wheelchair accessible taxicabs and livery cabs, and the TLC's proposed dispatch system may be steps towards providing meaningful access to the New York City taxicab system to disabled persons who require wheelchairs. However, meaningful access for the disabled to public transportation services is not a utopian goal or political promise, it is a basic civil right. Title II requires immediate and full compliance."

The city has requested a stay of the judge's order. He has yet to rule on its request. So as of now, it's still in effect. That means that even if the state legislature approves the grand compromise announced by Cuomo and Bloomberg last month, which it could do as early as this week, the city still won't be able to move forward with the bulk of its outer-borough taxi plan.

The judge's decision also means the accessibility of New York City's taxi and limousine system is now under two separate forms of oversight: the federal court's and the governor's. Not only must the Bloomberg administration present an accessibility plan to the judge, who must then approve it before the city's outer-borough taxi plans can be put into effect, but the administration must present a similar plan for approval to Governor Andrew Cuomo's department of transportation.

No major city in America has full accessibility.

The compromise announced by Cuomo and Bloomberg on Dec. 20 allows the city to create a new class of 18,000 outer-borough taxis: 14,400 non-accessible outer-borough taxis, and 3,600 accessible ones.

The compromise also allows the city to issue 2,000 regular taxi medallions, which sell for upward of $1 million each and would, theoretically, put more than $1 billion into the city coffers at a time when it is facing a substantial budget deficit.

However, the agreement reached with the governor comes with certain restrictions of its own: in the beginning, the city can sell a mere 400 of those regular yellow-taxi medallions. Only after the Bloomberg administration presents the governor with a plan to improve the overall taxi and limousine fleet's accessible, and the governor approves it, can New York City auction off the bulk of the medallions.

For his part, the judge will approve a plan based on how "meaningful" the access is that it provides. But what "meaningful access" means is kind of up in the air.

The city argues that a dispatch service it wants to set up, one that would allow people in wheelchairs to call 311 and thereby get prompt taxi service, provides meaningful access.

But some disability advocates contend the opposite.

"Meaningful is something that’s not unduly burdensome," said Jim Weisman, general counsel for the United Spinal Association. "So in a hail-a-cab system, where it takes five minutes to get a cab, what’s the equivalence to that? Is it an hour? Is it 20 minutes. I think an hour is burdensome, right? Everyone’s threshold is going to be in a different place, but one thing everyone can agree on is if all taxis are accessible, it would be equivalent."

Golden Globe winner Peter Dinklage dedicates award to injured dwarf tossing victim in Britain

From The Daily Mail in the UK:

A tribute by a Golden Globe winner has led to a dwarf from Britain Jan. 16 becoming one of the world’s top Twitter trends.

Games Of Thrones star Peter Dinklage (pictured) ended his acceptance speech with a mention of the name Martin Henderson, and the suggestion to 'Google him'.

Millions did. Then within minutes Mr Henderson was a trending topic on Twitter. Those who searched him online found the horrific story.

Mr Henderson is a 37-year-old dwarf and aspiring actor who was left badly injured after being picked up and thrown to the ground by a drunk man.

The attack happened as he stepped outside a pub in Wincanton, in Somerset, to have a cigarette.

Mr Henderson, from nearby Milborne Port, who suffers from achondroplasia dwarfism and spinal stenosis, said his legs went numb after the callous attack.

He said the October 7 attack was inspired by a 'dwarf-tossing' event attended by some members of England's national rugby team.

There was outrage in Britain after the event held on a night out during last year's Rugby World Cup in New Zealand.

England's rugby stars were also seen downing shots as they partied in a Queenstown bar called Altitude, which was hosting a 'Mad Midget Weekend'.

It was also the night that one of them, Mike Tindall, who was newly married into the Royal Family, was captured on CCTV kissing ex-girlfriend Jessica Palmer.

The night out followed a disastrous opening match for the England team, setting the tone for their appalling performance on and off the field during the tournament.

The stars, including Tindall, the husband of Princess Anne's daughter Zara Phillips, were disciplined for attending the event, as well as for other acts of bad behaviour on the tour.

Mr Henderson believes the violence that has put an end to his promising acting career may not have happened it it wasn't for the news about the players' night out last September.

'The England players had been in trouble for going to a dwarf tossing event and this might have given this guy the idea,' he said last week.

But his story was highlighted by Dinklage won best supporting actor in a TV series, miniseries or movie for his performance in the HBO fantasy series Game of Thrones. He earlier won an Emmy for the role.

Games Of Thrones actor Peter Dinklage won best supporting actor, for a TV miniseries drama.

Before signing off with the reference to Mr Henderson, Dinklage revealed how his mother kept him grounded in his acceptance speech.

He said: 'I was talking to my mother in Jersey before I came out, and she said, "Have fun, but have you seen Mildred Pierce? Guy Pearce is so good. He's going to win."

'So I haven't seen Mildred Pierce but I'm sure it's really good, and I just love our moms because they keep us humble.'

Reacting to the name-check, Martin said: 'I could not believe it when I heard I had been mentioned.

'I was totally shocked. It is really odd to think my name was heard by all these actors.

'It is nice to know my message is getting out to people that it is not acceptable to throw dwarves around.

'I have a massive response and it has mostly been really positive.

Martin confirmed he is still awaiting an apology from the England rugby team over the incident - which has left him needing to use a wheelchair for long journeys.

Ten months after becoming the first person to get a full face transplant in USA, Texas man marvels at recovering ability of expression

From The AP:

FORT WORTH, Texas — Ten months after becoming the first person to get a full face transplant in the United States, a Fort Worth man marvels at recovering the ability of expression.

The progress of 25-year-old Dallas Wiens (pictured) and the handful of other patients that have undergone the procedure is helping to make the case that it should be more widely available.

“The ability to smile and to show emotion on my face, even unintentionally, is such a natural thing,” Wiens told the Dallas Morning News (http://dallasne.ws/xU15Ij ). “Having a new face has changed me dramatically.”

Wiens’ face was burned off in 2008 when his head touched a high-voltage power line while he was standing in an elevated cherry picker. He was also left blind and has not recovered his sight.

He underwent more than two dozen surgeries, but they left him with a featureless face. The transplant changed that.

“I don’t look much different than anybody else,” he said.

Wiens case, and those of two others, were the subject of a study published last month in The New England Journal of Medicine. The procedure can correct “severe deformities in a single operation” rather than years of reconstructive surgery, the study said.

The Department of Defense funded the transplants though a $3.4 million grant with the hope of offering the procedures to wounded soldiers.

Wiens was the only patient of the first three surgeries done in the U.S. who did not suffer an acute rejection of the transplant within the first six months, though all suffered infections.

The first full face transplant was performed in France in 2005. Since then, 18 patients have shown “promising results,” the study said.

The study also weighed in on early concerns that the donor’s facial identity would be transferred to the recipient.

“It is our subjective opinion, as well as that of two of the donor families, that the patients do not look like their donors,” the study concluded. (The third donor family chose to remain anonymous and did not participate in the study.)

Wiens, through physical therapy, can once again do things such as control his lips to drink from a glass. And he regained his sense of smell.

He has had to return to Brigham and Women’s Hospital in Boston a couple times for adjustments to make the face fit more snugly.

“To undergo a face transplant and regain normalcy allows me to do whatever I want to do,” he said. “It’s a journey that I’ve just started.”

Two years later, Haitian amputees still have a long way to go

From PBS. In the picture, Fymée Diogene and Balnave Ulysee both lost legs in the 2010 earthquake.

Two years ago, a devastating earthquake in Haiti killed more than 200,000 people and caused injuries that required amputations for another 4,000 people. The NewsHour covered the struggle to fit so many with new prosthetic limbs in 2010.

The state of emergency is only now subsiding for Haiti, said Elizabeth MacNairn, executive director of Handicap International. But an ongoing cholera epidemic, widespread poverty, government problems and a hurricane have all held up the recovery process.

Many of those injured by the earthquake are still living in precarious conditions, said MacNairn. Unemployment is still high, and the disabled often live on one meal a day. She said that while Handicap International fitted 1,459 people with orthopedic devices and about 5,600 mobility aids, some disabled Haitians still haven't received needed prosthetics and rehabilitation therapy.

"The emergency is winding down, but it's not over," she said. "There's still a lot of work to be done."

But Kevin Carroll, vice president of prosthetics and orthotics with Hanger Ivan R. Sabel Foundation, says his clinic is performing more maintenance of the prosthetics and orthotics for amputees, rather than seeing busloads of new patients needing aid.

"Six months after the earthquake, we were absolutely packed, inside and outside the facility," he said. "Now we're maintaining new limbs."

Aid organizations are looking at 2012 as a chance to put better infrastructure in place for the amputees in case of future emergencies. Handicap International has constructed more than 1,000 temporary hurricane and earthquake-resistant shelters that are handicap accessible and is working with the Haitian authorities on building more. In addition, the group has prepared stockpiles of emergency equipment such as tents, blankets, walking aids and radios, said MacNairn.

Handicap International also is working with microfinanciers and employment organizations to encourage hiring disabled Haitians, she said.

"Part of our functional rehabilitation is to make them able to complete daily living tasks -- cooking, washing, writing -- which increases their self confidence," she added. And that translates to being able to work outside the home to support their families.

The earthquake left major destruction, but there have been some silver linings, said Carroll. Haitians clinicians and technicians now are better able to treat and serve amputees and the disabled with the help of aid agencies, and those organizations have learned how to better implement training during a crisis, he said. And therapeutic access for all disabled Haitians has improved, he added.

In addition, disability has gained visibility in Haiti, said Carroll. Amputee children have formed soccer teams and George Exantus, who dances with an artificial leg, is getting ready to compete again. He makes a living teaching dance classes.

Carroll said Hanger will stay as long as Haiti, a neighbor to the United States, needs help. "They're 90 minutes away from where I live. It's a shame if we can't help our neighbor," he said.

Religious school can claim “ministerial exception” to discrimination charge under the Americans with Disabilities Act for teacher who also taught secular subjects, U.S. Supreme Court rules

From Business Insurance:

WASHINGTON — A religious school can claim a “ministerial exception” to a discrimination charge under the Americans with Disabilities Act for a teacher who also taught secular subjects, the U.S. Supreme Court ruled unanimously Wednesday.

However, in its decision in Hosanna-Tabor Evangelical Lutheran Church and School vs. Equal Employment Opportunity Commission et al., the nation's highest court said the ministerial exception bars only employment discrimination lawsuits.

“We express no view on whether the exception bars other types of suits, including actions by employees alleging breach of contract or tortious conduct by their religious employers. There will be time enough to address the applicability of the exception to other circumstances if and when they arise,” Justice John Roberts wrote for the court.

One attorney said the ruling will result in fewer lawsuits by employees of religious institutions, while another lawyer said the Supreme Court's ruling still leaves some questions unanswered.

The ruling concerns Cheryl Perich, who worked as a “called” teacher and was designated a commissioned minister after completing certain academic requirements, including a course of theological study. In addition to teaching secular subjects, she taught a religion class, led her students in daily prayer and devotional exercises, and took her students to a weekly chapel service for the entire school.

Ms. Perich was terminated in 2005 after the school refused to reinstate her after a disability leave, although a doctor said she could return to work with no restrictions. She then filed suit, claiming discrimination and retaliation under the ADA.

A lower court agreed with the school that it was entitled to a “ministerial exception” to the ADA and dismissed the case.

However, in its unanimous opinion in 2010, the 6th U.S. Circuit Court of Appeals in Cincinnati disagreed, stating that “legislative history makes clear that Congress intended the ADA to broadly protect employees of religious entities from retaliation on the job, subject only to narrowly drawn religious exemption.” Ms. Perich's participation in some religious activities “does not make her primary function religious,” the appeals court said.

In overturning the appeals court, the Supreme Court said that while it has not ruled on this issue until now, it agrees with appeals court rulings that there is a ministerial exception grounded in the First Amendment.

“The members of a religious group put their faith in the hands of their ministers. Requiring a church to accept or retain an unwanted minister, or punishing a church for failing to do so, intrudes upon more than a mere employment decision. Such action interferes with the internal governance of the church, depriving the church of control over the selection of those who will personify its beliefs,” the high court ruled.

The ministerial exception applies in this case based on “the formal title give Perich by the church, the substance reflected in that title, her own use of that title and the important religious functions she performed for the Church,” the court ruled. “We conclude that Perich was a minister covered by the ministerial exception.”

“When a minister who has been fired sues her church alleging that her termination was discriminatory, the First Amendment has struck the balance for us. The church must be free to choose those who will guide it on its way,” the court ruled.

Gerald L. Maatman Jr., a partner with Seyfarth Shaw L.L.P. in Chicago, characterized the opinion as a “courthouse door closer”—meaning that the ruling will make it more difficult for church employees to find counsel to litigate their cases—“because the ministerial exception is given a very broad reading. And given the circumstances and facts in its case, it seems difficult for anyone to get around the ministerial exception, practically speaking.”

However, said Jeffrey A. Pasek, a defense attorney with Cozen O'Connor P.C. in Philadelphia, the opinion did leave “open how far religious organizations can go in the future in defining categories of employees who are ‘ministers.'''

In this case, Mr. Pasek said the plaintiff was a “called teacher” who performed the same duties as lay teachers. “It's not clear whether the court's decision would extend to them as well,” he said.

“In recent years, there have been dozens of these ministerial exemption cases that have been working their way through the state and federal courts and have involved positions ranging from bookkeepers at community centers to individuals who performed primarily laboring duties as a precursor to entering into pastoral study, Mr. Pasek said. “The court's decision doesn't address which, if any, of those kinds of positions might be able to qualify for a ministerial exemption in the future.”

In Australia, wheelchair-using passenger loses access case against Jetstar

From the Sydney Morning Herald in Australia:

A 78-year-old woman has lost her lawsuit against Jetstar over the airline's refusal to allow her on a flight between Adelaide and Brisbane because she was confined to a wheelchair.

Sheila King now faces significant financial hardship after being ordered to pay a substantial part of the airline's legal costs.

Mrs King booked her flight over the internet in August 2008 but was contacted the next day and told she would not be able to fly on that day because there were already two passengers requiring wheelchair assistance booked on the flight.

She was told Jetstar had a policy of only allowing a maximum of two wheelchair-reliant passengers on any flight.

She took the low-budget airline to the Federal Court, claiming it discriminated against her by treating her less favourably than a passenger who did not have a disability.

However, Federal Court Judge Alan Robertson found that Mrs King failed to select "wheelchairs" under a special section on the website.

He also found that the airline offered her another flight on the same route, but Mrs King refused.

"In my view Jetstar did not discriminate against Mrs King, being a person with a disability because of the fact that she ... possessed a wheelchair," Justice Robertson said.

Mrs King has had post-polio syndrome since childhood and has been in a wheelchair since 2008 after a car accident that resulted in three crushed vertebrae and three broken ribs.

She has been ordered to pay the legal costs of the airline, although this figure has been capped at $20,000 because the case was deemed to be in the public interest.

Joanna Shulman, CEO of Redfern Legal Centre, who advised Mrs King during her legal battle, said today's ruling demonstrated that Australia's discrimination laws were not strong enough to protect the rights of people with disabilities.

"The laws do not achieve equality of access to transport for people with a disability," Ms Shulman said.

"Access to transport is vital for people with a disability. Limitations on access to transport can affect a person's ability to work, access health services, spend time with family or enjoy travel. Urgent reform is therefore needed to ensure equal access is achieved."

"The Federal Government is currently reviewing Australia's discrimination laws. Mrs King's experience demonstrates that these laws need to be strengthened in order to ensure that service providers cannot discriminate on the grounds of disability."

Disabled people in Bolivia on the march in quest for equality

From The Guardian in the UK:

A group of disabled people in Bolivia is walking 1,400km, from Trinidad to La Paz – a route taking in both tropical climates and snow-capped mountains – to demand state benefits and an end to discrimination.

"We are asking for a law that gives us special recognition and a yearly allowance of 3,500 bolivianos [about £325]," says Carlos Mariaca, who is leading the caravan of 120 people – 75 of whom have disabilities, with the remainder being members of local NGOs and wheelchair monitors - to Bolivia's main city.

Mariaca, 42, a quadriplegic who can only move a few fingers and tilt his head, spoke to the Guardian as his group – which is expected to reach La Paz in mid-February – approached the town of Buena Vista in eastern Bolivia.

The participants set off on 15 November from the city of Trinidad, further north, and have already covered more than 500km, counting on support and charity from the residents in the towns along their route.

"They give us rice, pasta, coffee, sugar and bread," says Mariaca, who has been using a wheelchair for more than 30 years. "But sometimes we sleep under a tree or wherever we can find free accommodation."

Living with a disability in Bolivia is not easy, especially if you are poor. Very few buildings and streets are accessible by wheelchair. According to Lucio Álvarez, an expert on disabilities at the medical faculty of La Paz's public university, even this is not the greatest cause for concern.

"Social stigmas are the most serious," says Álvarez. "People suffer serious discrimination. Even teachers, police officers and doctors don't know how to deal with a disabled person."

There is no precise data on how many Bolivians live with a disability. The ministry of health lists approximately 35,000 people nationwide, but human rights groups believe the number to be as high as 600,000, or 6% of Bolivia's population.

Álvarez admits that without exact numbers it is difficult to implement national policies to help people with disabilities. Nonetheless, he says, it is hard to ignore their situation.

He tells the story of a small disabled child who was rescued by the police after being found in a pig barn surrounded by a wall of thorns. The child's mother had placed the thorns around her so she would not move and roll over while she was at work.

"If we look at this from a western point of view," says Álvarez, "this is a barbarity. But in a situation of extreme poverty like this, the mother really had no other option. If she stayed with her baby, they would have both died of hunger."

Javier Salguero, who heads the ministry of justice department that deals with people with disabilities, dismisses accusations that the government of President Evo Morales is not concerned about what, he admits, is a marginalised sector of society.

"It is a priority of our president to attend to their needs," said Salguero, adding that 40m bolivianos ($5.8m) is being spent to train teachers, offer job training and placements to people with disabilities, and help with legal needs. "We have a national plan in place that will guarantee equality in education, health, work and housing."

Salguero insists that offering a state benefit, similar to the incentives provided to poor parents for sending their children to school, would be counterproductive. He believes people with mental disabilities, for example, would find it difficult to manage their money. "What we want to do is offer programmes that improve their situation," he says, "and not give them cash that they would spend in less than a month."

However, the protesters disagree and are determined to make their voices heard. Ahead of them on their journey to La Paz lie the Andes. It is the rainy season in Bolivia now, and the ascent to the city will be treacherous. "Our caravan will not be detained, and we will go on no matter the cost," says Mariaca.

And if the politicians do not listen, he says, they are ready to go not only to all the countries in Latin America, but "all the way to the United States, to denounce our government … [for] ignoring the plight faced by people with disabilities in Bolivia".

A sign language interpreter glove that links to your smartphone

From The Atlantic:

A team of three developers, Oleg Imanilov, Zvika Markfeld, Saron Paz, and Tomer Daniel, have developed a novel sign language interpreter glove.

The prototype glove, which was demonstrated at a recent Google developers event in Tel Aviv, incorporates a number of sensors to detect hand gestures which are then interpreted via a smartphone app to produce text.

Flex sensors embedded in the fingers of the glove detect finger position while an accelerometer and tilt sensor detect hand movement and orientation as demonstrated in the video below.

It is not clear how many gestures the system can interpret and the device would seem to be an early proof of concept. However, it could offer a simple and cheap interface for people not versed in sign language to easily communicate with the hearing-impaired.

Tampa, Florida ordinance aids disabled drivers at gas pump

From The Tampa Tribune:

TAMPA -- Kevin Poindexter (pictured) pulled the red 2000 Chrysler Town & Country minivan up to pump 7 at the Mobil gas station on Busch Boulevard and 46th Street and began what for him is an ordeal.

A wheelchair user, he hit a lever in the van that opens the sliding side door and another that lowers a ramp. He moved out of the drivers seat, into the chair and rolled down the ramp, which extends about five feet from the van.

"I hope no one runs over my ramp," he said. "I had that happen before when someone pulled up right behind me, then tried to drive around me instead of waiting."

Poindexter wheeled into the store, up to the attendant and paid for gas.

As he did, a man in a pickup with a long utility trailer pulled up to the pump behind Poindexter. After a few minutes in the store, Poindexter wheeled back and began pumping, all the while, he said, thinking back to last year when an impatient driver destroyed his ramp.

Poindexter, a Navy veteran, survived his service to the country intact. But he has been confined to a wheelchair since 1997 after being shot in the back as someone tried to carjack him in Chicago while he was on leave.

For most people, filling up the gas tank is no big deal. Pull up to the pump, get out, pay, gas up and go.

But for Poindexter and other disabled drivers, a trip to the gas station is inconvenient at best and dangerous at worst.

Some relief arrived Jan. 1 for the more than 63,000 drivers in Hillsborough County who, like Poindexter, have permanent handicap stickers for their vehicles.

Thanks to an effort by Paralyzed Veterans Of America — of which Poindexter is a member — and County Commissioner Sandy Murman, Hillsborough County now requires gas stations to provide a number at the pump that handicapped motorists can call to get an attendant to come out and pump gas for them.

Murman and representatives of other disability groups say the ordinance appears to be the first of its kind in the nation.

Though federal law requires stations with two or more attendants to pump gas for handicapped motorists, the law does not specify how stations should comply.

Some have call buttons. But those are often placed so high that someone in a wheelchair can't reach them, Murman said.

Some stations do nothing at all, she said, and handicapped drivers are often forced to resort to "honking, waiving their handicapped cards trying to get attention."

That often doesn't work.

"The new ordinance fills in a big gap in the federal law," she said.

Murman, whose brother Richard Murman had Down syndrome and passed away a few years ago in a group home at age 56, is a supporter of efforts to help people with disabilities.

She said she opted to back the gas pumping assistance ordinance after hearing from Sandy Sroka, the county's Americans with Disabilities Act coordinator, who told her of the problems handicapped motorists experience.

The ordinance is the brainchild of Ben Ritter, government relations director for the Florida Gulf Coast Chapter of the Paralyzed Veterans of America. He said he wanted an equitable solution, not just for veterans, but for all handicapped drivers. Nearly 7 percent of the county's 940,000 licensed motorists have a permanent handicap sticker, according to the Florida Department of Highway Safety and Motor Vehicles.

A 70-year-old retired Marine sergeant who was paralyzed from the chest down after a post-service surgery went awry, Ritter said the idea came to him about four years ago after being unable to reach a call button at a gas station.

"My background is in sales and marketing, said Ritter, a real estate broker. "Sometimes, the common-sense, easiest solutions work best."

Ritter's solution was to require stations to display placards at the pumps carrying the International Symbol of Accessibility logo — the white wheel chair on a blue background — with a number to call to get an attendant, as federal law requires.

"It is easy and inexpensive," Ritter said.

Mike Aldred, sales manager for J.H. Williams Oil, likes the idea.

"It is easy to implement, not costly, and a simple plan," Aldred said.

About 18 months ago, Ritter contacted the company and they agreed to test the program at their Citgo station at 19th Street and Adamo Drive.

Aldred said the company spent about $100 on the placards and gets about four or five requests a week.

"It was simple. It worked and is really something that needs to be done everywhere," said Aldred.

The Hillsborough ordinance has no penalty provision, said Murman. "If we find there is a problem complying, we may come back and address that later," she said.

After pumping his gas, wheeling back into his van, hopping back into the driver's seat and hitting the levers that roll up the ramp and shut the side door, Kevin Poindexter said he appreciates the new rule.

"The gas pumping ordinance will be very helpful," Poindexter said.

FOX drama 'Alcatraz' adds 'Deadwood' star Geri Jewell

From Digital Spy:

Geri Jewell (pictured) has joined the cast of upcoming Fox drama Alcatraz.

Jewell - known for her role in NBC sitcom The Facts of Life - will play the sister of deputy prison warden EB Tiller (Jason Butler Harner), according to TVLine.

The character will appear in a series of 1960s-set flashbacks that follow Tiller's early days at the famous island prison.

Jewell, who was born with cerebral palsy, also starred on HBO's Deadwood between 2004 and 2006.

Rookie Blue star Eric Johnson and Caprica actor Michael Eklund have also signed up for roles on Alcatraz.

Sam Neill recently claimed that his own character Emerson Hauser is morally ambiguous, calling the government agent "lethal, bad and dangerous to know".

Alcatraz premieres on Monday, January 16 at 8/7c on Fox. The show will air on Watch in the UK.

Fox announces new series "Touch" will revolve around 9/11 widower, son with autism

From the FOX network:

"Touch" will have a Series Preview WED 9/8c JAN 25.

We are all interconnected. Our lives are invisibly tied to those whose destinies touch ours.

This is the hopeful premise of the new drama TOUCH from creator and writer Tim Kring ("Heroes," "Crossing Jordan") and executive producers Peter Chernin (NEW GIRL, TERRA NOVA) and Katherine Pope (NEW GIRL, TERRA NOVA).

Blending science, spirituality and emotion, the series will follow seemingly unrelated people all over the world whose lives affect each other in ways seen and unseen, known and unknown. At the story's center is MARTIN BOHM (Kiefer Sutherland), a widower and single father, haunted by an inability to connect to his emotionally challenged 11-year-old son, JAKE (David Mazouz). Caring, intelligent and thoughtful, Martin has tried everything to reach his son. But Jake never speaks, shows little emotion, and never allows himself to be touched by anyone, including Martin. Jake is obsessed with numbers-writing long strings of them in his ever-present notebooks-and with discarded cell phones.

Social worker CLEA HOPKINS (Gugu Mbatha-Raw) believes that Jake's needs are too serious for Martin to handle. She sees a man whose life has become dominated by a child he can no longer control. She believes that it's time for the state to intervene. So Jake is placed in foster care, despite Martin's desperate objections.

But everything changes after Martin meets ARTHUR TELLER (Danny Glover), a professor and an expert on children who possess special gifts when it comes to numbers. Martin learns that Jake possesses an extraordinary gift-the ability to perceive the seemingly hidden patterns that connect every life on the planet. While Martin wants nothing more than to communicate directly with his son, Jake connects to his father through numbers, not words. Martin realizes that it's his job to decipher these numbers and recognize their meaning. As he puts the pieces together, he will help people across the world connect as their lives intersect according to the patterns Jake has foreseen.

Martin's quest to connect with his son will shape humanity's destiny.

TOUCH is a production of Chernin Entertainment and Tailwind Productions, in association with 20th Century Fox Television. Tim Kring created the series and wrote the pilot. Kring, Francis Lawrence ("Water for Elephants"), Peter Chernin, Katherine Pope, Kiefer Sutherland, Suzan Bymel ("The War at Home") and Carol Barbee ("Jericho") are executive producers. Lawrence directed the pilot.

Deaf percussionist Dame Evelyn Glennie bangs the drum in 3D film about science of sound

From The Scotsman:

As the world’s foremost percussionist she has performed with symphony orchestras and the cast of Sesame Street, but now Dame Evelyn Glennie (pictured) is set to hit the big screen.

The Grammy Award-winning instrumentalist is to star in a 3D film which will be shown in cinemas around the globe.

The Aberdeenshire virtuoso, who is profoundly deaf, will narrate and perform in Just Listen, a production which explores the science of sound.

The Scot has already travelled to Vancouver to begin shooting the film, which is due to be screened in IMAX cinemas worldwide.

The movie will showcase Glennie’s live performances alongside images of bats, bottle-nosed dolphins and whales.

Glennie has expressed her delight at the prospect of becoming a film star at the age of 46. The Royal Academy of Music graduate said: “The moment I learned about the incredible science in this film I knew I had to be involved.

“I am really quite fascinated by echo-locating bats and dolphins and have always wondered how sound affects the unconscious brain.”

Producer Brad Lisle said the manner in which the musician overcame her lack of hearing made her the perfect person to front the project.

The president of US film company Foxfire Interactive said: “This is a story about the science of sound and Evelyn has a unique way of experiencing sound.

“We believe her inspirational personality will have a huge impact on the people who will watch the film globally and show children, in particular, that anything is possible.

“Her role as narrator and performer will transport audiences to places they have never been before and inspire them to listen more closely to the world around them.”

Filming for the Firefox production has already begun in Canada. The film’s promotional website, which is due to be launched later this month, describes the project as “an extraordinary feast for the ears and the eyes.”

It states: “Follow Evelyn Glennie, who happens to be deaf, on a scientific journey into the pulsating sounds of our planet.

“Fly through the echo-location world of bats, swim with singing humpbacks and decipher the language of the bottle-nosed dolphin.

“Discover how sound affects our breathing, heart rate and brain waves and listen to the pulse of our earth with seismologists.”

Glennie, who has been profoundly deaf since the age of 12, grew up on a farm near the town of Ellon, in the north-east. She was initially rejected by the Royal Academy of Music in London on account of her lack of hearing, but successfully appealed and proved herself to be a major talent. Her work was recognised by the Queen in 1993 when she was awarded the OBE, and in 2007 when she became a Dame.

The Ambassador for the Royal National Children’s Foundation made an appearance on the educational US children’s show Sesame Street in 2001, where she played percussion on Oscar the Grouch’s metal bin.

Last year she performed on the CBeebies musical show ZingZillas.

Discredited autism study author Andrew Wakefield sues medical journal for defamation

from CNN:

A doctor whose research on autism has been discredited by many medical authorities is launching a lawsuit against the British Medical Journal, as well as a freelance journalist and one of the journal's editors.

Dr. Andrew Wakefield is the author of a controversial 1998 autism study and has linked the measles, mumps and rubella (MMR) vaccine to causing autism. In his lawsuit, he alleges that the British Medical Journal (BMJ), and specifically writer Brian Deer and editor Dr. Fiona Godlee, defamed him. They have made "unfair, incorrect, inaccurate and unjust criticisms of findings previously reported by Dr. Wakefield and 12 other co-authors," a petition filed in Travis County, Texas, states.

Wakefield's medical license was taken away in Britain in 2010 after a lengthy investigation into his research on children with autism.

One year ago this week, the British Medical Journal published the first of a series of articles calling Wakefield's controversial research fraudulent. They accused Wakefield of misrepresenting or altering the medical histories of all 12 of the patients involved in the 1998 study. Deer, the author of the articles, said last year he thought Wakefield should face criminal charges.

Wakefield's petition denies that Wakefield fraudulently and intentionally manipulated or falsified data or diagnoses in the study published in the journal Lancet in 1998. Twelve years later, in February 2010, three months before Wakefield lost his licence, the Lancet retracted the 1998 study because they said it became clear parts of the paper were "incorrect."

The petition states that this "malicious publication of the false statements about Dr. Wakefield" continue to cause damages such as "injury to character and reputation, humiliation, injury to feelings, and loss of earning capacity."

CNN's Dr. Sanjay Gupta questioned Wakefield in 2011 - watch here.

Deer told CNN Friday he has not received the petition, although he is aware of its existence. A statement on behalf of Deer and the British Medical Journal defended what had appeared in the journal previously: "While we await formal service, unsurprisingly the BMJ and Mr. Deer stand by the material published in the BMJ and their other statements and confirm that they have instructed lawyers to defend the claim vigorously."

The petition cites interviews Deer did with CNN's Anderson Cooper 360 and CNN's American Morning in 2011 among examples of defamatory statements made by Deer. CNN is not implicated in the petition. It also takes issue with an editorial written by Godlee calling Wakefield's paper "an elaborate fraud."

Wakefield has brought claims and made complaints against Deer, as well as other news outlets, in relation to the Lancet study, but none of these have been successful, the British Medical Journal statement said.

A call to Wakefield's lawyer was not immediately returned.

Wakefield now lives in Austin, Texas, the petition said.

CNN legal analyst Jeffrey Toobin finds it surprising that Wakefield would launch this lawsuit in the United States instead of Great Britain, because with the freedom of the press, it's harder to win a libel suit of this nature in the U.S.