'Diagnose and adios'*

Disabled Activists Win Battle for Independent Care

Earlier this summer, federal officials announced what they call the boldest change in the way the government pays for long-term care since the invention of Medicare and Medicaid. Washington will now provide $2 billion to states that help people leave a nursing home - instead of paying for them to live in one.

That decision came because of a highly unlikely alliance between a group of disabled activists in wheelchairs who came to Washington trying to get themselves arrested at the White House gates -- and the Bush administration aide who ended up listening to them.

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BBC - Ouch! Disability Magazine

Ouch! - the BBC's disability magazine, containing news, features, columnists, comedy and chat community, reflecting the experiences of disabled people.

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Senate candidates slow to take a stand

Alaska is home to more than 70,000 disabled adults, but those voters have no obvious champion among the leading contenders in the U.S. Senate race.

Neither do the homeless or their advocates. And gay voters have only a long-shot candidate to voice support of same-sex civil marriages.

For the most part, candidates are treading lightly around unpopular or divisive issues, focusing their official Web sites on catchphrases like energy development, veterans affairs and gun rights. They talk about their commitment to health care and social issues, without directly addressing disabled or homeless constituents.

"Alaskans with disabilities are a significant voting bloc, and they're not getting adequate attention from the U.S. Senate candidates," said Kelly Donnelly with the Center for Human Development at the University of Alaska Anchorage. "It reflects our society at large, which still looks at the disabled as a segregated population."

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A home of his own

Paralyzed from the neck down, John Hinchman was told he'd have to live in a nursing home for the rest of his life. But this week, he moved into his own home in Juneau with his family as a recipient of a federal grant to help people move from a nursing home back into the community.

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Helping understand multiple sclerosis

Dear Annie: As a person living with multiple sclerosis, I'm amazed how many friends no longer stay in touch because they don't understand the disease. I hope you will print this essay so people will realize how we feel.

Dear Greenville: Here it is. We hope it helps.

Conquering Mt. McKinley

Old news, but interesting...

Clay Roscoe, 33, of Philadelphia, made it to 17,200 feet - higher than any other of the MS climbers - before a whiteout and 60 mph winds thwarted his attempts to reach the summit.

"We're not saying everyone with MS should climb mountains. We're saying ... stay active, stay positive."

Booker said she wants to take on McKinley again next summer.

"I came right off and said we have to do this again."
Climb this,

Tica Seeks Better Access for All

By Suzy Madigan
Tico Times Staff

Heidy Arias is one of those waitresses whose natural warmth and enthusiasm inspires customers and colleagues alike at T.G.I. Friday's in Escazú, where she works.

"She's got a great sense of humor, so lots of people ask for her to wait on them," said Paulo Alpízar, T.G.I. Friday's service manager. "She's a great worker, better than some people who can walk."

Arias, who is confined to a wheelchair, successfully returned to work just two months after she lost the use of her legs in an accident.

Her determination to keep her job despite the difficulties involved stems from a deep conviction that she is in a wheelchair for a purpose - to be a vocal champion of people with disabilities and fight for their increased inclusion in Costa Rican life.

"My mission is to get to a point where people aren't surprised to see a person in a wheelchair doing normal things like everyone else," said the 23-year-old waitress.

Arias believes that until the country's infrastructure is fully adapted to allow equal access, people with handicaps will always be excluded from society.

"People with disabilities are not incorporated into society because places don't have wheelchair access, so they are shut away in their houses. I want to be their voice," she added.

In 1996, Costa Rica passed the Law for Equality of Opportunity for Disabled Persons [Law 7600], which aimed to increase access for disabled people throughout public and private sectors.

In July, the seven-year grace period for implementing the law expired, but much remains to be done for the country to be in compliance.

DETERMINED: Arias is a vocal champion for people with disabilities.
Tico Times/Jeffrey Arguedas
Arias says she is frustrated by the lack of progress.

"The government has fulfilled parts of the law, but not in totality," she said. "You'll go to a restaurant where there are disabled parking spaces, but then there will be ten steps to the entrance and no ramp."

Arias probably will never know who fired the gun that put her in a wheelchair a month before her 21st birthday, or why she was hit.

One night in February 2001, Arias, a Costa Rican drama and tourism student, was on her way to a nightclub with a friend. The taxi pulled up outside the club, and as they paid the driver, Arias suddenly felt an impact in her back, and the immediate loss of feeling in her legs.

A bullet had hit the car's trunk, ripped through the back seat and lodged itself in Arias' spine.

"When I felt the bullet, I knew immediately that I wouldn't walk again," she said. "I didn't need a doctor to tell me."

No one appeared to be in the street, and the police never discovered what happened, so Arias regards the tragedy as a bizarre "accident."

Despite the lack of answers, she refuses to wallow in bitterness or bewilderment, even though she occasionally wonders about the circumstances of that night.

"I want to get to heaven and speak with God and ask him what happened," she said. "I only want to know if the bullet was meant for me, not who did it. But I don't think about it. It's not important for me."

When she first returned to work at T.G.I. Friday's, she had to overcome diners' initial preconceptions and surprise at being served by someone in a wheelchair. Now, as she chats and jokes with tables of families, they respond animatedly to her.

"I went back to work because I'm a useful person, and I don't want to depend on other people," she said. "I get ¢10,000 monthly disability allowance, so I need to work to eat, buy medicine and have my own things."

Arias usually has to take taxis to get around because of the lack of buses with ramps or wheelchair space. Even when she is going short distances from her home in Escazú, she often is unable to use the sidewalks because of obstacles such as curbs and deep gutters, and so is forced to travel on the road, despite the dangers.

She says she personally knew three people who have died in their wheelchairs crossing streets in San José.

"People in cars shout at me, 'Why don't you try the sidewalk?', and so I shout back, 'Why don't you try my wheelchair?'"

Arias points out it is not just basic transportation and services that are lacking in Costa Rica. Many entertainment and tourism options also are off-limits to people in wheelchairs.

"People think that those with disabilities don't enjoy themselves, they don't go to the beach and so on. But without access, it's because they can't," she pointed out.

Just before International Day of Disabled Persons, Dec. 3, the Federation of Costa Rican Organizations for Persons with Disabilities (FECODIS) and other groups organized a seminar on accessible tourism.

The forum strategically highlighted the potential economic benefits for businesses that expand their client base to include people with permanent and temporary disabilities, such as pregnant women, children, elderly, blind and deaf people and those in wheelchairs.

Andrea Vargas of FECODIS, who also uses a wheelchair, said she would like to see the tourism industry opened up to everyone.

"The tourism industry must consider people with disabilities as any tourist, so they have to adapt the environment to [their] needs," she said.

The Rainforest Aerial Tram, located 45 minutes from San José on the highway to the Caribbean coast, is one tourist destination that has recognized that improved access for disabled tourists means increased profits.

Arias and I decided to take the bus there to check out the facilities, and take a ride on the renowned cable car over the forest.

Rather than flagging down a bus mid-route, we left from the Caribeño terminal, so we had time to find a helpful passenger willing to carry Arias up the stairs onto the bus.

At the Aerial Tram, despite friendly guides who were more than willing to help, there were more difficulties to be faced. At the park entrance, with Arias lifted back into her chair from the bus, she immediately had to leave her chair again to board a minibus to the main site.

We arrived at the tram, and she was back in the chair to get up to the entrance via ramps. Then, because there were no wheelchair spaces in the aerial gondolas, she had to be helped out of her chair once more to take a regular seat.

Despite the tranquil surroundings and the affability of the staff, Arias said she felt awkward and unable to relax."People feel safe in their wheelchairs, not out of them," she said. "My chair is my [set of] legs. I don't want to leave it somewhere."

Back on the ground, the specially constructed forest path allowed her to use her chair to enjoy the forest on her own - much to her satisfaction

It is facilities such as these, Arias said, that she would like to see throughout the country - facilities that enable people with disabilities to move around and enjoy themselves, in their wheelchairs, the same as people who can walk on their own two legs.

Although she appreciates people's help, she would rather be able to do things on her own, she explained. For her, the fight is about granting people with disabilities independence.

"When the government changes many things, when it won't permit a building to be built without ramps, then everyone will be incorporated into society," she said.

Allan Appel: People with disabilities always walk alone

Allan Appel writes a biweekly column about disabilities. He has MS.

For a patient, the struggle to live with a debilitating illness is solitary.
It lies deep under our own skin, regardless of the number of people trying to lend their support.

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