SIGN ON! Joint Letter to the Senate in Support of ADA Amendments Act (S.3406)

What follows below is a letter for the Senate supporting the new Senate version of the ADA Amendments Act of 2008 (S. 3406) and its passage this year. This letter is being distributed for sign-on to ALL the employer, disability, civil rights, faith-related, health, veterans, and other organizations that supported the ADAAA.

To sign on your organization's support of this joint letter, enter your name on the ADABill.org website.

Sign on as soon as possible but absolutely no later than close of business on Friday, August 15.

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The following letter will be distributed to Senators on behalf of the hundreds of organizations committed to securing the promise of the ADA.

Dear Senator,

The undersigned groups, representing a broad range of interests, write in support of the ADA Amendments Act of 2008 (S.3406). This bill introduced on July 31, 2008, had 64 cosponsors as of August 1, with 55 of those joining as original cosponsors.

S.3406 would revise the ADA in a manner designed to work for both people with disabilities and for entities governed under the law. The bill is a result of sustained efforts between Senators from both sides of the aisle and intensive and thoughtful talks between representatives of the disability community and entities governed by the law. For that reason, we believe that S.3406 strikes a delicate balance between the needs of individuals with disabilities and the realities experienced by entities including employers and public accommodations, which are covered under the law.

We urge your support in making enactment of S.3406, the ADA Amendments Act, a reality as soon as Congress returns in September. We stand ready to work with you towards that end.

Sincerely,

[your organization added here]

August 12, 2008 in advocacy | Permalink | Comments (0)

A Life Well Lived

“Death is natural and necessary, but not just. It is a random force of nature; survival is equally accidental. Each loss is an occasion to remember that survival is a gift.”

Harriet McBryde Johnson

Disability and human rights activist Harriet McBryde Johnson died at her home in South Carolina on June 3. The world has lost a passionate and dedicated advocate for social change. Untold numbers in the disability community and beyond have lost a caring friend and role model. Johnson was a civil rights lawyer, a weaver of tales, and a spokesperson for the dignity and humanity of people with disabilities. Her articles and essays for the New York Times, including a Sunday magazine cover piece, thrust Harriet onto the national stage. She wrote passionately and with humor about a quite serious topic: her right and the rights of others, to exist in the world as a person with a disability. Her withering critique of those who would deny her existence was delivered with a calm and open-hearted voice, and her generosity of spirit was evident always.

Article here.

Johnson, who was born with a neuromuscular disease, drew national attention for her opposition to "the charity mentality" and "pity-based tactics" of the annual Jerry Lewis muscular dystrophy telethon. Lewis told the Chicago Tribune he had no intention of making peace with opponents such as Johnson. He likened the idea of meeting with them to entertaining Hezbollah or insurgents in Iraq.

The protests started after Lewis wrote a 1990 Parade magazine article in which he imagined being disabled. Among his conclusions, "I realize that my life IS half, so I must learn to do things halfway. I just have to learn to try to be good at being half a person."

Article here.

Picture here.

Articles by Harriet McBryde Johnson

Unspeakable Conversations

He insists he doesn't want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was, and to let other parents kill similar babies as they come along and thereby avoid the suffering that comes with lives like mine and satisfy the reasonable preferences of parents for a different kind of child. It has nothing to do with me. I should not feel threatened.

Whenever I try to wrap my head around his tight string of syllogisms, my brain gets so fried it's . . . almost fun. Mercy! It's like ''Alice in Wonderland.''

It is a chilly Monday in late March, just less than a year ago. I am at Princeton University. My host is Prof. Peter Singer, often called -- and not just by his book publicist -- the most influential philosopher of our time. He is the man who wants me dead. No, that's not at all fair. He wants to legalize the killing of certain babies who might come to be like me if allowed to live. He also says he believes that it should be lawful under some circumstances to kill, at any age, individuals with cognitive impairments so severe that he doesn't consider them ''persons.'' What does it take to be a person? Awareness of your own existence in time. The capacity to harbor preferences as to the future, including the preference for continuing to live.

At this stage of my life, he says, I am a person. However, as an infant, I wasn't. I, like all humans, was born without self-awareness. And eventually, assuming my brain finally gets so fried that I fall into that wonderland where self and other and present and past and future blur into one boundless, formless all or nothing, then I'll lose my personhood and therefore my right to life. Then, he says, my family and doctors might put me out of my misery, or out of my bliss or oblivion, and no one count it murder.

Not Dead at All - Why Congress was right to stick up for Terri Sciavo

13 Questions from Ouch! May 15, 2008

There are worse things in the world than looking foolish. Someone told me that right before law school and it has stood me in very good stead. If you can risk looking foolish, you can do what you want to do.
Step-by-Step Guide to Organizing a Protest Against the Jerry Lewis Telethon

The Disability Gulag

Grandmother lost her mother in the early 1900's to what was considered progressive policy. To protect society from the insane, feebleminded and physically defective, states invested enormous public capital in institutions, often scattered in remote areas. Into this state-created disability gulag people disappeared, one by one.

Today, more than 1.7 million mothers and fathers, daughters and sons, are lost in America's disability gulag. Today's gulag characterizes isolation and control as care and protection, and the disappearances are often called voluntary placements. However, you don't vanish because that's what you want or need. You vanish because that's what the state offers. You make your choice from an array of one.

But now the gulag faces a challenge from people who know the fear firsthand.

The Way We Live Now: 5-30-04; Stairway to Justice

Wheelchair Unbound


Alas for Tiny Tim, He Became a Christmas Cliche

Overlooked in the Shadows

New Mobility Magazine Person of the Year 2003: A Life Well Lived

Books by Harriet McBryde Johnson

Too Late to Die Young: Nearly True Tales from a Life

Review here.

And here.

Accidents of Nature

Others here.


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June 5, 2008 in advocacy, people | Permalink | Comments (0)

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.

Listen here.

September 15, 2006 in advocacy | Permalink | Comments (0)

BBC - Ouch! Disability Magazine

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

More here.

September 27, 2004 in advocacy, entertainment, humor, politics | Permalink | Comments (0)

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."

More here.

September 12, 2004 in advocacy, alaska, politics | Permalink | Comments (0)

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.

More here.

September 1, 2004 in accessability, advocacy, alaska, people | Permalink | Comments (0)

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.

January 3, 2004 in advocacy | Permalink | Comments (0)

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,

December 16, 2003 in accessability, advocacy, alaska, people, Travel | Permalink | Comments (0)

Tica Seeks Better Access for All

DETERMINED: Arias is a vocal champion for people with disabilities. Tico Times/Jeffrey ArguedasBy 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.

December 15, 2003 in accessability, advocacy, people, politics, Travel | Permalink | Comments (0)

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.

READ THIS!

More articles by Appel

December 1, 2003 in advocacy, bummer, people | Permalink | Comments (0)