In India, GoAir prevents blind woman, her two kids from boarding flight

From the Mumbai Mirror:

Staff told Gujarat resident Shabnam Mansuri that in case of an emergency, in-flight staff would find it difficult to take care of her and the children; Mansuri finally booked a seat on Jet Airways.

A 35-yr-old visually challenged woman, who was scheduled to fly from Mumbai to Ahmedabad by a GoAir flight on Monday morning, was stopped from boarding the aircraft by the airline staffers at the domestic terminal of Chhatrapati Shivaji Airport. The reason? The lady is visually challenged and was with her two sons aged nine and two years

The lady, Shabnam Mansuri, was in the city with her kids to meet her husband Dr Samir Mansuri, an ayurveda practitioner based in Oshiwara, Andheri (West).

“Seems humanity doesn’t exist,” said Shabnam, who runs a non-profit organisation, Blinds Dream, that works to empower visually challenged persons.

The Mansuris say that this is not the first time their were flying by GoAir. In fact, they had informed the airlines about Shabnam’s disability and that she was travelling with children. The three had even cleared the security checks

Her husband, Dr Mansuri, told Mumbai Mirror the tickets for his wife and children had been booked well in advance on September 2. “At the time of booking, we informed that the passenger is a blind lady travelling with two children,” said Dr Mansuri, adding that they had informed the booking agent to request for an escort citing disability.

However, a day prior to the flight, Dr Mansuri received a call from the agent, saying that the flight was being cancelled. “I sensed something amiss. I had a heated argument with the agent and said that we would anyway go to the airport and check if the flight was being cancelled,” he said.

Shabnam was scheduled to attend an important meeting on September 5 in connection with a show the organisation is organising.

The next day, Shabnam’s friend, Rajal dropped her off at the airport. “We reached by 6.30 am - well on time,” said Shabnam, who found her way through the entire procedure of handing over her luggage, getting the boarding pass and clearing security check.

“Just as the kids and I were about to board the plane, a Go Air employee by the name of Smruti stopped me and said I could not get on board with the kids as I am blind,” said Shabnam. “I told her it wasn’t the first time I was travelling, but she refused to listen. Despite offering to sign the ‘responsibility’ form, I was not allowed.”

Shabnam made the crew members speak to her husband, who also requested that his she be allowed on board.

Dr Mansuri said he even told the crew members over phone that Shabnam would carry the younger boy in her arms while the older child would help her navigate by holding her hand.

“I told them that my nine-year-old son is capable of helping his mother and Shabnam would take her seat without inconveniencing other passengers,” said Dr Mansuri.

Shabnam said that since eight years she has been flying and has never faced any problem. “About four or five years ago, I had taken a GoAir flight to Mumbai and at that time nobody stopped me.”

Shabbam said that there’s no law that prevents a blind person from boarding an aircraft with his/her kids. “Is this how they airline treat you in such a manner?” asked a let-down Shabnam.

“Left with no choice, I bought a Jet Air ticket for the same evening. Jet Air staffers were very co-operative and helpful. The even got me a taxi so I could go back home to Andheri as there was a gap of nearly 12 hours for the flight,” she said.

The airline has now assured the passengers that it will refund the fare. “I’m not sure we want that,” said Shabnam. Dr Mansuri echoed the view. “I do not want the money. We just wanted to be treated well, without being forced to realise time and again the disability we have,” he said.

A GoAir spokesperson said that Shabnam Mansuri checked in with her children (one an infant). Had the visually challenged lady been travelling alone, GoAir could have readily accepted her and facilitated her journey. However, as she was travelling with two children, one an infant, an able-bodied adult was essential for travel along with the lady and her children to look after the children in case of an emergency.

The matter was explained at the boarding gate and the lady was comforted. Her relative returned and escorted the three Mansuris back. Ms.Mansuri’s tickets were fully refunded. The decision to not allow travel was taken only in the interest of Ms Mansuri and her children’s safety. There was no intent to discriminate, or cause any discomfort.

In New Zealand, new campaign aims to give disabled people more access

From The Manukau Courier:

A new social enterprise is on a mission to educate and inspire Kiwis to create a more accessible future for everybody.

Be. Accessible is aiming for a totally accessible country for people with disabilities.

The Be. On The Road campaign has visited 12 cities over a month-long tour.

Chief executive Minnie Baragwanath is legally blind and launched the organisation earlier this year to change attitudes and improve accessibility in communities.

The campaign has three focuses for change – physical, social and personal.

"The physical part is building a new environment to make things easier to get to.

"The second is social attitudes. Do we expect a disabled person to have an amazing job? Or do we expect that they are unemployed because they have some impairment."

Ms Baragwanath says being a chief executive of a new organisation isn't what some of her acquaintances envisioned for her.

"On a personal level, if you're a young person with a disability for example and you face this, how do you see yourself?

"We're interesting people with a different perspective to bring to anything we do."

The campaign was given a huge boost in May thanks to a government grant of $4 million over four years.

Ms Baragwanath says the campaign is "based around a society that values people of all abilities to the highest level".

Everyone will benefit at some point in their lives, she says, because age brings "increased rates of impairment".

With the Rugby World Cup here, Be. Accessible is racing to complete more than 200 accessibility assessments nationwide.

"We saw an opportunity to launch the Be. Accessibility campaign before the Rugby World Cup so that we're ready to receive the thousands of people with different abilities who are coming from all over the world."

UN conference in New York to focus on ways of improving lives of people with disabilities

From the UN News Centre. In the picture, disabled workers at a chalk factory in Ghana's capital, Accra.

Hundreds of delegates from governments and civil society will gather at United Nations in New York tomorrow to discuss ways to improve the lives and well-being of people with disabilities by addressing some of the challenges they face, including unemployment.

The three-day Fourth Session of the Conference of States Parties to the Convention on the Rights of Persons with Disabilities will bring together up to 500 delegates, including 78 non-governmental organizations (NGOs) with more than 300 representatives, under the theme “Enabling Development, Realizing the Rights of Persons with Disabilities.”

Ronald Clive McCallum, the chair of the UN Committee on the Rights of Persons with Disabilities stressed, at a news conference at UN Headquarters, the need to provide employment opportunities for people with disabilities to help them support themselves and give them the opportunity to use their talents for the larger good of society.

“It is only through employment that we can play full roles as citizens in our countries. It is only through employment that we can use our talents to contribute to the better of society. It is only through employment that we can support ourselves and our families,” said Mr. McCallum, who has a visual disability himself.

He pointed out that too much money was being spent on disability pensions and social welfare benefits in some countries.

“What we want is money to be spent to get us into employment so that less of us need be on social security benefits. And in these economic times of downturn when some countries are cutting society security, it is even more imperative to have more programmes to get us out of sheltered workshops, to get us out of our homes, and to get us in full-time employment.”

The Convention on the Rights of Persons with Disabilities has been ratified by 103 States and signed by 149 countries. Ratification makes it legally binding on States to comply with its contents.

There are also 62 States that have ratified the Optional Protocol to the Convention that allows for individuals and organizations of persons with disabilities to complain to the UN committee about non-compliance with the Convention by governments.

Daniela Bas, the Director of the Division for Social Policy and Development at the UN Department of Economic and Social Affairs (DESA), which houses the Secretariat of the Convention, stressed that persons with disabilities must enjoy equal opportunities.

“It can take decades to change attitudes and behaviours deeply ingrained in cultures,” she said in a press release. “The UN has been focusing on a people-centred, developmental approach to disability.”

Round-table discussions during the Conference will focus on issues related to international cooperation, participation in political and public life, and the right to work and employment for persons with disabilities.

An interactive dialogue will be held to discuss the implementation of the Convention by UN agencies and other stakeholders.

The Convention was adopted by the General Assembly in December 2006 and came into force in May 2008. According to the Convention, State Parties meet regularly to review and discuss its implementation. Since 2008, three sessions of the Conference of States Parties have been held at UN Headquarters.

In Michigan, Android Industries works on MV-1, first vehicle built specifically for disabled people

From The Flint Journal:

FLINT TOWNSHIP, Michigan — The Flint area is helping make another automotive first this fall.

With help from a manufacturer in Flint Township, a Miami-based automaker is ready to roll out the first vehicle specifically produced to transport people in wheelchairs by October.

Vehicle Production Group’s flagship vehicle — the MV-1 — is being produced by Android Industries in Flint Township.

Right now, about 60 vehicles are being produced a week but the company hopes to increase that to about 9,000 per year in 2012, said Matt DeMars, president and chief operating officer of VPG.

VPG bills the MV-1 as a revolutionary vehicle because it was designed and built from the ground up with wheelchair users in mind.


“It really gives the disabled freedom,” DeMars said. “It creates independence for people getting out in to the world.”

Vehicles that are altered for the disabled can have design flaws, fall short of meeting all the needs of a disabled person and sometimes are too large for garages, said Dave Schembri, chief executive officer of VPG.

Schembri, who previously served as president of Smart Car USA, said the company was founded to fulfill the needs of the disabled market.


The vehicle, which resembles a Chevrolet Tahoe, allows easier access for passengers who are wheelchair users. They enter the vehicle through built-in ramp that comes out of the side.

“It’s really all in the structure of the vehicle,” Schembri said.

The vehicle comes in a standard and deluxe models that offer manual and power wheelchair ramps, respectively. The base model costs $39,950 and the deluxe model is $41,950.

Mike Frazure of Ann Arbor is waiting for his MV-1 one to arrive and said he’s ecstatic to own a car that’s geared toward the disabled that actually fits in his garage. His daughter, Emily, 27, uses a wheelchair.

“What’s perfect for us is that it will be much easier for her to enter the vehicle with the built-in ramp while it’s still in the garage without having to go out into the cold and ice,” he said.

Although manufactured at the Android Industries facility on Maple Road, the vehicle is assembled in Indiana. Android Industries produces the chassis and parts that make up MV-1. It also sprays them with a new, eco-friendly rust-preventative coating.

The MV-1 contract has helped the auto supplier regain some of the work it lost when General Motors stopped using it for its truck plant in Flint, which forced the layoff of 260 workers in 2010.


The vehicle has helped bring about 23 of those jobs back, said June Nagle, business unit director for Android’s Flint campus.


Android currently has about 60 employees in Flint.

If the MV-1 takes off, maybe the company can employ more than of 500 people again, Nagle said.

“The MV-1 has been the initial lifeblood of revitalizing our Maple Road facility,” she said.

VPG will launch sales of the MV-1 at 40-50 dealers nationwide, including Serra Automotive locally, which handles all orders for the MV-1 in Michigan.

“It’s a niche vehicle and it is tremendously needed,” said Joe Serra, president of Serra Automotive. “It’s going to be a great value to those that this vehicle would benefit.”

New law could slash disabled Iraqi veterans' already paltry benefits

From The NY Times:

BAGHDAD — It is hard to say which is a worse indignity to the thousands of Iraqi soldiers and police officers who have suffered crippling injuries fighting alongside the Americans in a war that continues today: receiving subpar medical care from the government they fought to preserve, or a new law that could slash their already paltry benefits.
“We are defending the Iraqi people,” said Ali Mohammad Heaal (pictured), who was a police trainee when he lost his left arm in a car bomb attack in 2005 and now works at a nongovernmental organization that advocates on behalf of wounded members of Iraq’s security forces. “Right now, we feel humiliated.”

Mr. Heaal’s organization, the Lanterns of Mercy, is trying to overturn the new law, passed in July by Parliament, that raises the salaries of active-duty soldiers and police officers but reduces government payments to those who have been wounded, including those who have lost limbs and have been unable to obtain prosthetics to enable them to work again. The law could be put into effect as soon as this month.

His efforts appear to be paying dividends, as some members of Parliament now say they never intended to reduce compensation for war veterans and plan to consider amending the legislation. Even in Iraq, it seems, politicians are finding that there are risks to laws that appear to abandon veterans.

“We are studying it,” said Abbas al-Bayati, a lawmaker and a member of the security committee. “If we find there are problems, we are ready to modify it in a way that keeps the level of compensation for their sacrifices.”

As it is written now, the law would also reduce lump-sum payments to those who were severely wounded and rescind a provision from a previous law that awarded land to victims — even though many have not received any property.

Mr. Bayati said that the intention of the law was to raise salaries for active-duty soldiers and police officers, and that he was unaware of the provisions that reduced compensation for veterans. “This is an unintentional mistake, and we will address it through amendment as soon as possible,” he said.

Another lawmaker, Najiha Abdulamir, a member of a parliamentary commission for wounded veterans, said that if Parliament did not change the law, then veterans should “demonstrate and demand their rights.”

The controversy comes as the American military prepares to withdraw, leaving the fighting to Iraq’s soldiers and police officers, who continue to take casualties from insurgent attacks almost daily, and who face those dangers without the comfort of knowing that their country will care for them and honor their sacrifices if they are hurt.

The new law that will reduce veterans’ benefits has Iraq’s wounded feeling dishonored and ignored. Many recall Saddam Hussein’s time, when those who sacrificed to preserve a dictator’s power were rewarded with land and money. “If you compare now to the previous regime, it would have been better,” Mr. Heaal said. “And they call this a democracy.”
Many joined Iraq’s new army after it was reconstituted in 2005 for a mix of motives, economic and patriotic.

“There were no opportunities for work in 2003,” said Ali Jasim, 39, who fought alongside American soldiers and Marines before losing a leg in 2005 when he was struck by a roadside bomb while securing polling sites for a national referendum that year on Iraq’s new constitution. “I also felt I needed to protect my country.”

He and his sister, and their children, are squatters in a ramshackle and boxlike home constructed of concrete blocks in a poor Shiite neighborhood that is a maze of dirt alleys.
On a recent afternoon, Mr. Jasim was spending his day as he always does: lying on the floor, his head propped up on a pillow, sweltering from the lack of air-conditioning and surrounded by his children. Like many men in his position, he is experiencing a severe economic hardship that, with the passage of the new law, could get worse.

After his injury, Mr. Jasim continued to receive his full pay — which had included a combat bonus and allowances for food — of $700 a month. It was then reduced to $450 when the government stopped paying the extra danger pay. Under the new law, he said, his pay will fall to $200.

Mr. Heaal, the former police trainee, was forced to sell his house to pay for medical treatment after being wounded. He receives $530 a month, and he could see his compensation fall to under $200 a month.

The law has added a new layer of resentment toward politicians who operate in a sphere of corruption and favoritism, and who are widely seen as out of touch with most of the Iraqi people.

“I joined the police to protect my country in a time when you were afraid of going outside the Green Zone,” said Falah Hassan Abed, who was displaced from his home because he could not work after losing his right leg in 2005, directing his rage at lawmakers. “I was face to face with the ruthless killers, the terrorists. In return, I just want to live in dignity, me and my family, and not be forced to beg to feed my family. I want to feel that there is someone who is grateful for what I did and what I lost.”

In some ways the thousands of casualties among Iraq’s army and police are the forgotten victims of the war, overshadowed in many accounts of the conflict’s toll by the numbers of American troops and Iraqi civilians who have been killed or wounded. Those numbers are familiar and easily referenced: close to 5,000 American military personnel killed, and nearly 100,000 Iraqi civilians killed, according to some accounts. Among Iraq’s security forces, more than 10,000 have been killed, according to the Iraq Index compiled by the Brookings Institution, and while there is no precise estimate for the number wounded, that figure is certainly in the tens of thousands.

A further grievance for these soldiers and police officers is the knowledge that the American soldiers and Marines who fought with them returned home to a country that may not have supported the war, but supported them. They have glimpsed television images of American presidents visiting the wounded in military hospitals.

“Here in Iraq, we don’t have any officials visiting us,” Mr. Heaal said. “And now they are punishing us with this new law.”

Freie Universtat Berlin shows off autonomous electric wheelchair at IFA that uses Kinect

From SlashGear:

One of the things that can be difficult for people that are wheelchair bound is getting around in their own home. Depending on the type of injury that has left a person dependent on a wheelchair the simple operation of controls like a joystick can be difficult or impossible. At IFA, a university from Berlin was on hand showing off a very cool automated wheelchair that uses the Microsoft Kinect sensor and a netbook to navigate around the home.

The wheelchair works by allowing the user or their caregiver or user to set waypoints around the house. The wheelchair will then automatically navigate to the location, such as a bedroom or kitchen and the sensor will see any obstacles in the way and avoid them. This is a particularly good thing for people that are unable to use their hands and require controls that are used with the mouth like a sip and puff system or a joystick controlled using the tongue.

This would mean that a quadriplegic might be able to simply tell the chair where they need to be in the home and the chair would take them or they could use the standard controls to select a location and then the chair would take them. The only downside I see to the design in the video is that the netbook brain of the system would be vulnerable to spills and bodily fluids that could ruin the netbook and leave the chair inoperable.

Photo of wheelchair user in Tropical Storm Lee flood waters makes national news

From ABC News:

Cecil Flemming tries to maneuver his wheelchair through the waters on the Mandeville, La. lakefront of Lake Pontchartrain after waters crashed over the seawall from Tropical Storm Lee, on Sunday, Sept. 4, 2011.

In St. Cloud, Minn., Cathedral student with Down syndrome dancing at season opener

From St. Cloud Times in Minn.:

Ever since she was little, Megan Bjorklund (pictured) loved to dance.

Her father remembers watching her dance to musicals on television. Her mom encouraged her with musical DVDs.

A dream comes to fruition tonight for the eighth-grader with Down syndrome when she performs with the St. Cloud Cathedral dance team at halftime of the Crusaders’ football game.

Cathedral plays Holdingford at 7 p.m. at St. Cloud State University in the season opener. It’s one of a number of opening games played this week in the area.

Bjorklund, the first Down syndrome student at Cathedral, will watch her brother Bjorn, a running back, play in the game.

“He’s amazing,” she said.

And Bjorn plans to stay on the field during halftime to watch his sister perform.

It’s a poignant moment for the Byron and Peg Bjorklund family, which includes children Andrew, 22, Jordan, 21, Bjorn, 17, Claire, 15, and Megan, 13. All either have participated or are participating in multiple activities at Cathedral. Claire is on the girls’ soccer team.

“She’s always full of joy, happy to see you,” Bjorn Bjorklund said of Megan.

“We’re active and she wants to do the same.”

So Megan will dance. She has practiced with the rest of the Cathedral dance team.

“She’s so proud to be a part of the football game,” Byron Bjorklund said.

Dance team is recognized as a winter sport by the Minnesota State High School League. The fall is reserved for nonscored performances, like the one the team will do at halftime today.

“We love performing at football games because the crowds are so much better than at our meets,” senior captain Tasha Johnson said.

Without the stress of being closely scored as it is in the winter, many participants try dance team in the fall to see if they want to participate in the competitive season.

When Cathedral dance team coach Sara Marek was asked about Megan Bjorklund participating, she quickly said yes.

“There wasn’t a second thought when they asked to have her on our team,” said Marek, who became emotional when talking about Megan. “It was an immediate yes with no hesitation.”

“It’s all about inclusion. We need to be there for every kid.”

Teammates like Johnson, senior Kristi Clark and junior Whitney Hughs enjoy having Megan on the team. They help her out with the routines.

“It’s so much fun having her on the team,” Clark said.

“She’s doing so good,” Hughs said.

Megan Bjorklund was born on Sept. 11, 1998. Her parents knew she was going to have some difficulties when she was in the womb. They want to spread her story publicly because so many similar pregnancies are terminated.

They believe they’ve been blessed with a gift from God.

“She’s taught me more about myself than anything I can say that I taught her,” Byron Bjorklund said. “I think we all can agree that we are created in God’s image.

“That’s what we say about Megan.”

Megan is aware of her situation.

Her mom asks her if she has Down syndrome. She nods her head yes.

Peg Bjorklund said there was never any question whether she would attend Cathedral like her brothers and sister. Many parents choose to send students like Megan to the St. Cloud school district, which has programs and support staff for cognitively challenged students.

But her support system at Cathedral is strong.

“Bjorn is really, really good with her,” Cathedral senior football player Michael Kerber said.

“Everybody likes her,” said Tommy McMorrow, another Cathedral football player.

Her mom says Megan has the same dreams and aspirations as many teenagers. She wants to have a boyfriend and be popular. And she wants to dance.

“It’s fun,” she said. “I like it.”

She said she’ll be a little nervous tonight. Her mother says she approaches the performance like everything else. She goes at it with a passion and isn’t afraid of failure or trying again.

“I’m looking forward to it,” Bjorn Bjorklund said of watching his sister dance. “I’m sure she’ll do great.”

Delta said its four representatives were wrong for charging a blind customer extra for booking tickets over the phone

From the Minneapolis Star Tribune. Pictured is Susan Barton, who is blind and has MS and lupus, and who can't make airline reservations on the Internet. Also pictured is Vincent Barton, who is nearing 80 and not comfortable making reservations online. Delta wants to charge them $25 per ticket (total $50) to make reservations over the phone. No exceptions, no waivers for disabilities.

Susan Barton is legally blind and uses a wheelchair, a result of her 40-year battle with multiple sclerosis. But she doesn't let her disability hamper her love of traveling with her husband.

So her dander rose when she tried to book two tickets on Delta Air Lines for a long weekend in Chicago this past June and the airline told her she'd have to pay an extra $50 -- $25 per person -- to buy the tickets over the phone instead of online.

After Barton explained that she was blind and couldn't use the website, the call center representative insisted that the fee couldn't be waived. That person's supervisor said the same thing. So did the two people she called at the airline's Atlanta headquarters.

"For years I've been arranging our travel and doing it by phone," said Barton, 64, of Minneapolis, who retired as director of human resources for the Prudential Insurance Co. "Northwest charged me $5 extra for arranging those tickets by phone. [Delta was] going to charge me $25 extra for each ticket. That just seemed, quite frankly, outrageous to me."

"I asked, isn't there an exception for someone who's handicapped? Their response was, isn't there a family member or friend who could do it for you?"

Barton said her husband, Vincent, a retired Prudential executive, will be 80 later this month and isn't adept at navigating the airline's website.

When Whistleblower called Delta's corporate communications office in Atlanta, spokeswoman Ashley Black said the four people Susan Barton spoke with were wrong.

"Our policy is that any customer with disabilities that cannot use delta.com, that fee will be waived," Black said.

Black later sent an e-mail saying, "While it's unfortunate this incident occurred, we are using this opportunity to improve our processes. We're working with our agents to ensure that they are aware of and in compliance with this policy."

Chris Danielsen, director of public relations for the National Federation of the Blind, said Delta's refusal to waive the fee violated federal law. Under the Air Carrier Access Act, an airline must waive call-center fees for a blind person if they cannot use the airline's website. An airline also must charge a blind person the same fare that is available on the Internet, he said.

Delta is hardly alone among airlines for refusing to waive fees for a blind passenger. Jonathan Lazar, a professor of computer science at Towson University in Maryland, led a study of airlines' compliance with the Air Carrier Access Act. The study, which did not include Delta, found four U.S. airlines whose websites could not be read with screen readers, and thus were not accessible to the blind.



When researchers posed as blind customers, three of the four airlines refused to waive the call-center fee in anywhere from two to six of the calls.

Last week, a quick survey by Whistleblower found that American Airlines, United Airlines and U.S. Airways all charge a $25 per ticket fee to make reservations by phone, but all said that fee is waived for customers with disabilities. Southwest Airlines said it does not charge a fee to make phone reservations.

Barton's case is just one in the string of incidents in which Delta was faulted in its treatment of passengers with disabilities.

Earlier this year, Whistleblower described how Carrie Salberg, who has muscular dystrophy and uses a ventilator to breathe, was kicked off a Delta flight from New Orleans to the Twin Cities after the airline told her she couldn't bring her medical equipment on board. A month earlier, Delta had told her that her equipment met the company's requirements.

In February, Delta was fined $2 million by the U.S. Department of Transportation (DOT) after the agency reviewed 5,000 complaints filed by and on behalf of disabled passengers. The fine was the largest the DOT has ever assessed against an airline in a case not involving safety violations.

Susan Barton said she and her husband travel four or five times a year, spending a few weeks in Palm Desert, Calif., Sanibel, Fla., or Hilton Head, S.C. Most of their flights are on Delta, and, once they get to the airport, the airline has been "really very accommodating," she said.

No easy answers for those who share Venus Williams’s autoimmune disease

From The NY Times:

It often starts out as an uncomfortable feeling in the eyes and mouth. Patients say their eyes are dry and red, even though they are using eye drops. Often too, they say, their mouths are dry. Food is becoming tasteless. Some get swollen glands in their necks, making it look like they have mumps.

It turns out those are the hallmark clinical signs of Sjogren’s syndrome, a mysterious disease caused by an overproduction of B lymphocytes, the cells of the immune system that make antibodies. The deluge of B cells clogs glands. Some people have trouble perspiring because their sweat glands are obstructed. Or they have trouble digesting food. Women may have pain during intercourse because their vaginas become dry.

Sometimes, said Dr. Michael D. Lockshin, a rheumatologist and director of the Barbara Volcker Center at the Hospital for Special Surgery in New York, “you can bend the eyelid down and see lumps, collections of lymphocytes, that make the eyelids look pebbly on the inside.”

When Venus Williams said the disease made her feel tired, she was right. Patients with Sjogren’s, like those with the related diseases rheumatoid arthritis and lupus, are unusually tired, and there is no way to alleviate this sensation. Investigators have studied lupus patients, asking how much oxygen they consume when they exercise, and found that they use much more than healthy people, although no one knows why that is so.

It is hard to know how many people have Sjogren’s, because different doctors use different criteria for diagnosis. The hallmark of the disease is the presence of two unusual antibodies among the thousands produced, Ro and La, named with the first two letters of the last names of the initial patients in whom the disease was described decades ago. Some doctors diagnose Sjogren’s in anyone whose blood test shows Ro and La. But a third of patients with lupus, a similar disorder, and an unknown number of patients with rheumatoid arthritis also have Ro and La antibodies.

Other doctors only diagnose Sjogren’s if patients have Ro and La, dry eyes and mouths, and swollen salivary glands, but do not have signs of lupus or any other disease.

Prednisone, which suppresses the immune system, can offer immediate short-term relief of symptoms. People who are disfigured by swollen glands in their neck can look perfectly normal within 24 hours. But it cannot be taken for long periods because it has serious side effects, like osteoporosis, cataracts, facial swelling, weight gain, muscle wasting, early atherosclerosis and diabetes.

The simplest and safest treatment is the anti-malarial drug hydrocholor quinoline. No one knows why it slows the disease — its effects were discovered by accident when troops took it to ward off malaria. Some who had rheumatoid arthritis or lupus noticed that their symptoms were relieved.

But it can damage the retina over time and its effects are irreversible — the result is loss of vision.

So doctors are left trying drugs that suppress the immune system. But, Lockshin said, it is hard to know what will happen in the long run with those drugs, which were not tested in patients with Sjogren’s.

The long-term outlook for patients with Sjogren’s is not good. They are at increased risk of lymphomas, cancers of B cells. They are at risk for kidney disease, a scarring of the kidneys that can destroy their function, requiring patients to go on dialysis. And their dry eyes and dry mouths tend to get worse. Dry mouths lead to dental cavities and deterioration of the tissues of the mouth so that eating becomes a misery. Dry eyes after a while cannot be helped by eye drops.

It is not an encouraging picture, Lockshin admits. The disease has so many unknowns that, to a large extent, doctors’ hands are tied.

From statehouse to studio, former NY Gov. Paterson becomes radio show host for WOR

From FishbowlNY:

From the statehouse to the studio.

Former Governor David Paterson, who had been a frequent fill-in for morning man John Gambling, takes over the slot on a regular basis starting next week.

Unlike his predecessor, though, Paterson’s show will not be heard nationally on the WOR Radio Network.

“They don’t want me to worry about everything being national,” Paterson tells FishbowlNY. “They want me to start out being local. That’s kind of a debate that’s going back and forth between them.”

While Paterson would certainly welcome the larger listenership, he’s happy to focus on what he knows best.

“Rather than take on the added pressure of trying to be interesting to a national audience, [they want me to] start with something I know–the local audience,” Paterson admits. “That’s where my experience has been during the Gambling show.”

Paterson, who has been visually impaired since he was a baby, is proud to take this historic step. Paterson consults for the National Federation of the Blind, which has determined through research that he is the first blind person to host a show on a major radio station.

“Blind people particularly listen to a lot of radio. I don’t know a blind person that didn’t know all the radio stations,” Paterson says. “…I’m proud of it if it’s true that I’m the first, but I also feel there were a number of people who preceded me, some of them I knew, who would have been just as good but didn’t get the chance.”

Being blind has not been much of a barrier for Paterson in forging a life in broadcasting.

“Because I was never a full-timer, when I would do the Gambling show I gave the time by looking at my cell phone,” Paterson says.

Another time, Paterson recalls hitting a button to ask the producer who his guest on the phone was. However, the button turned his mic on over the air.

“It was the most embarrassing moment I’ve had on radio yet,” Paterson recalls. “I’m going to go in the studio and work with the engineer [who] has a plan to solve all those problems.”

Paterson’s radio career grew with additional fill-in work at WABC and WFAN. It was at WFAN that FishbowlNY sat down with the former governor in March.

At the time, he indicated a switch from doing radio just because it was something he enjoyed, to becoming more recognized for his on-air shifts.

Even though Paterson hoped his occasional radio appearances would lead to steady work somewhere, he knew it would be an uphill battle.

“Certainly there’s discussion in the industry that a lot of people who could have been good, may have started out with a weekend show, and then promote them from there,” Paterson says. “The fact that WOR would want to step right out and give me a full-time position from the very start, that did surprise me.

“But I’m going to work as hard as I can to make sure that surprise doesn’t turn to disdain.”

As we reported yesterday, Steve Malzberg has been dropped by WOR after four years hosting the 4 to 6 p.m. talk show.

As for the previous WOR afternoon host, Paterson has respect for Malzberg’s work ethic.

“He’s very prepared. He was the first radio host that I knew who used to take clips from the Sunday shows and then used them as part of the discussion,” Paterson recalls. “So he’s definitely creative.”

But he says, it is clear to the average listener that Malzberg’s show was nationally syndicated.

“Newsradio 88 and 1010 WINS [are] always in the top two or three, and I think the reason is because the people turn on the radio for the service as much as they turn on for the entertainment,” Paterson says. “So, I’m going to make sure to give the time, do traffic, do the weather, and keep it going very much like the Gambling show. I don’t think anybody else in the afternoon does that.”

Distancing himself farther from Malzberg, Paterson will bring a calmer demeanor to the airwaves.

“One thing I’ve noticed about a lot of these shows is that the hosts have an ax to grind. “They’re always agitated at everything,” Paterson says. “That might have been a luxury that the public indulged because their anger could be entertainment. But now the public is angry.

“Who can explain to [listeners] what we have to do to get out of this, and who can bring the people on to debate that issue, rather than finding the scapegoat for it.”

Despite his political affiliation as a Democratic, Paterson says he won’t go in the opposite direction of Malzberg’s right-wing talk.

“One of the things that I think became a problem for me in government is that when it came to the economy I agreed with the conservatives,” Paterson says. “[I] was often viewed almost [as] a traitor by my colleagues. I don’ t think I abandoned my views as much as I changed them.”

Ready for the challenge of his own afternoon drive show, the former governor has no apprehensions.

“I feel no hestitation at all,” Paterson says. “I wish the show would start tomorrow. Ideas are jumping in my head.”

9/11 study: Multiple health woes persist for rescue workers

From The LA Times:

Ten years after two jets crashed into the World Trade Center during the Sept. 11 attacks, scientists are still learning about the long-term health effects of the disaster.

Now researchers led by a team from the Mount Sinai School of Medicine in New York City have reported anew that physical and mental illnesses were very common across a large group of 9/11 emergency responders — and remained persistent for 10% to 30% of them a full nine years after the disaster.

The study, which followed 27,449 emergency workers, was released Thursday by the journal Lancet.

More than 50,000 people are believed to have worked in rescue, recovery and cleanup operations at the World trade Center site. This group, which included police officers, firefighters, construction workers and municipal workers, were exposed to toxic smoke created by burning jet fuel, and a thick cloud of dangerous dust — a pulverized mix of glass fibers, asbestos, lead and other dangerous particles and chemicals — created when the towers collapsed. They were also placed under intense stress.

The research team divided the volunteers who participated in the study into four groups, based on their exposure to the site and its debris. Eighty-six percent were men, 57% were white and their median age on the day of the attacks was 38 years.

Over the nine years the scientists studied, 27.6% of the subjects were diagnosed with asthma (compared with a baseline before 9/11 of 10.5%), 42.3% with sinusitis (baseline 10.7%) and 39.3% with gastroesophageal reflux disease (baseline 5.8%).

Among rescue and recovery workers, 27.5% had been diagnosed with depression (versus a 3% baseline) and 31.9% had been diagnosed with post-traumatic stress disorder (versus a 1% baseline). The authors reported that police officers were at lower risk for mental illness than other responders, perhaps because their training and experience better equipped them for dealing with traumatic situations.

Workers with the greatest exposure at ground zero had the highest incidence of multiple disorders. Almost 10% of the rescue and recovery workers had asthma, sinusitis and gastroesophageal reflux disease; 18% had two out of the three ailments. Sixty-nine percent of rescue workers with ost-traumatic stress disorder had a physical condition as well, as did 70% of those with depression and 72% of those with panic disorder.

"We now know that, in one of the largest WTC rescue and recovery cohorts, health effects have persisted for almost a decade," wrote Matthew P. Mauer of the New York State Department of Health, in an accompanying editorial. "These latest findings leave no doubt about the necessity of continuing health monitoring, treatment, and research for WTC rescue and recovery workers... [and] emphasize the critical importance of including the study of long-term health effects in any future disaster response plan."

Thousands of disabled Texans face service cuts that could compromise their futures

From The Texas Tribune:

For Milla Powell, a 12-year-old from Austin with cerebral palsy, (pictured) the little things make all the difference. Massage therapy to increase flexibility and ease her tightened muscles. Recreational programs, in which therapists take her into the community to help her build her social skills. Music therapy to help Milla, who is nonverbal, connect without words.

Services like these are on the chopping block for thousands of Texans with disabilities — yet another casualty of the significant budget cuts state lawmakers passed in May.

Directed to find $31 million in savings, Texas’ Department of Aging and Disability Services will by Dec. 1 put new caps on services provided to people enrolled in four state disability programs. The programs, designed to keep people with profound disabilities out of nursing homes and institutions, enroll nearly 48,000 people combined, roughly a fifth of whom are under age 21. The department estimates that the new service caps could affect up to 12,000 people.

The limits will not affect life-saving services like nursing care, emergency response systems and meal delivery. But they will slash services disability rights advocates say are essential to clients and their families, from speech and physical therapy to respite hours that give caregivers a brief break. So-called specialized therapies, like aquatic and horseback therapy, will see the biggest cuts.

“These programs are where we should be focusing resources, creating a lifelong improvement, rather than cutting them back,” said Dennis Borel, executive director of the Coalition of Texans with Disabilities. “Anytime you do things like this, you’re going to see an uptick in institutionalization.”

Under the agency’s cost-containment plan, the clients receiving the most extensive care in these less-essential service areas will see the greatest cuts; others could see no cuts at all. Those facing cuts can appeal them — and win if they prove their health or welfare will be endangered.

Allison Lowery, a spokeswoman for the department, said agency officials have warned lawmakers that “quite a few individuals” will likely win their appeals. “Therefore, we might not be able to achieve the $31 million cost-savings target,” Lowery said in an email.

Milla, who is legally blind, uses a wheelchair and depends on her caregivers for a wide range of assistance, from bathing to toileting. The services she receives through the state’s Community Living Assistance and Support Services program are not just keeping her alive — they are helping her thrive, said her mother, Cassie Powell.

An attendant comes to help Milla so that Powell, who also has two teenage sons and a baby, can take a break to turn to the needs of the rest of her family.

A speech therapist teaches Milla to communicate with a touch-screen computer, and a recreational therapist takes her on field trips so she can practice in the community.

“To think she’s going to get up and walk someday, to use her hands or feet, that’s difficult and far out there,” Powell said. “But being able to have a conversation with someone —we’re getting there on a daily basis. And her therapy makes a huge difference in her progress.”

NY1 covers inaccessible hurricane shelters in Brooklyn

From NY1:

When Hurricane Irene hit, wheelchair user Tania Morales of Beverly Square East, Brooklyn tried to evacuate to the local city shelter, only to be turned away.

"The gate for the ramp was locked and they couldn't find the keys to open the gate," says Morales.

She had to turn around in the hurricane and go home.

"I just felt very scared," she says.

Advocates for the disabled were assured that city shelters would be more accommodating.

On the day of the hurricane, however, Susan Dooha, the executive director of the Center for Independence of the Disabled in New York, conducted a site survey at six city shelters and found eye-opening conditions.

"The city Office of Emergency Management had told us that people with disabilities would have equal access," says Dooha. "What I found were locked ramps, locked doors, locked gates. Ramps that were really dangerous."

Dooha says these conditions were especially egregious since CIDNY had been working with OEM since September 11th to make sure the disabled have access in case of an emergency.

NY1 called OEM and a spokesman claimed the agency did not receive any such complaints that day.

"I reported all of these issues," Dooha says.

More importantly, Dooha says this is not a matter of complaints, but a matter of a systemic failure to make sure emergency systems are accessible and accountable.

Still, the OEM spokesman said if there was a problem with entry, the person should have called 311. Morales responded that is not exactly practical for a disabled person out in the middle of a hurricane.

The OEM spokesman also said only six of 81 shelters were visited by CIDNY, which is not representative of the agency's overall effort.

But in Morales' case, one shelter was enough.

"I'm not the only one whose going have the same problem," says Morales.

In move toward accessibility, Washington state trail described for deaf-blind hikers

From the Kitsap Sun in Wash.:

SILVERDALE, Wash. — With their toes at the edge of a bridge straddling Clear Creek, Connie and Steve Garrett peered over the rust-colored railing at the salmon stream flowing below.

The couple smiled as they crossed the bridge dotted with sunlight peeking through the trees. The barely 70-degree temperature and cool morning were a welcome change for the husband and wife who live in Tempe, Ariz. where they recently experienced a record-high temperature of 118 degrees. When it gets that hot, it's like being inside an oven, Connie Garrett said.

The pair are in Kitsap County for the week as campers with the 33rd annual Seattle Lighthouse Deaf-Blind Retreat. Attendees are legally blind and have some degree of hearing loss or are deaf. Seattle Lighthouse is a nonprofit that provides employment, support and training opportunities for people who are deaf, deaf-blind and blind with other disabilities.

The Garretts traversed the trail Thursday with volunteer interpreters Allen Reposh of New Jersey and Joanna Walker of Oregon and Caryn Tenin of Seattle, another deaf-blind camper. They were part of a larger group of retreat participants that came to walk the trail.

The crunch of their feet along the dirt path was the only audible indicator that anyone was walking the trail behind the Goodwill building. But anyone fluent in American Sign Language would have been overwhelmed by the chatter as their fingers and hands flowed with conversations about the beauty of the surroundings.

"I love to hike and look around at the beautiful trees," said Myra Hatala of Long Beach, Calif., through interpreter Merryn Givens. "It's just beautiful."

The retreat has been held for 26 years at the Seabeck Conference Center and offers adult attendees the chance to be with old friends, meet other deaf-blind people and participate in daily activities like bike riding, trail walks, kayaking and visit places like the Clear Creek Trail and an oyster farm. It draws participants from around the country and the world. This year, some campers came from as far away as Germany; last year, a group visited from Holland.

Participants also attend workshops on relevant legislation and learn about technology and devices that can help them in their daily lives. This year, one workshop focused on communication techniques that allow campers to talk with more than one deaf-blind person at a time.

Deaf-blind people have varying levels of communication skills and sometimes an interpreter is needed to facilitate conversations. Techniques like sign language or touch are used to communicate, but some people feel isolated because they can't pick up on visual and audio cues exchanged during conversation.

Touching on the arm, shoulder or leg lets a deaf-blind person communicate to the deaf-blind person they're talking with that they are engaged in the conversation, said Paul Ducharme, Seattle Lighthouse Deaf-Blind Community Class and Retreat coordinator.

Ducharme, who was speaking through interpreters Paul Deeming and C. Traub using sign language, organized Thursday's visit to the trail after a friend suggested it would be a nice experience for retreat participants.

"Deaf-blind people like the smells, the senses, the feeling to be outside," Ducharme said. "It's still very nice to be out in nature."

Experiencing the plants along the trail, including lavender, Queen Anne's Lace and the wildflowers were highlights of Ducharme's visit, he said. Lavender was his favorite scent, which was evident by the sprig of purple popping from his shirt pocket within sniffing distance.

His impression of the trail after an hour-and-a-half?

"It's not long enough," he said.