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MDA’s award-winning bimonthly national magazine goes to everyone registered with MDA, as well as to MDA clinics, researchers and subscribers.
Quest publishes articles on all aspects of living with a neuromuscular disease, and updates on research findings. Quest’s circulation is 125,000.
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Check Out the New Digital Version of Quest! |
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Game to Get Away
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Online games provide an alternate world
in which to play, say gamers with neuromuscular
diseases. Here’s a primer of terminology,
gaming options, social tips and
info on how playing may affect muscles.
In addition, Kid Quest, page 69, provides
Internet gaming safety tips for kids.
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Stories by Topic
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Toughing It
Out!
The ADA At 16
by Christina Medvescek
It’s been 16 years since the signing in July 1990 of the
Americans with Disabilities Act, the law created to make the public, private and employment sectors of
American society accessible to people with disabilities. Sixteen years — versus long human centuries of
barriers and prejudices against people with disabilities.
Needless to say, the gap between ADA ideals and reality is still pretty wide.
But the ADA is proving hardy, resisting efforts to mow it down.
Like grass growing in a sidewalk crack, it’s slowly spreading its roots into the foundation of American
society, sprouting curb cuts, accessible buildings, employer accommodations and more.
There are no “ADA police,” so ADA enforcement usually is the
result of a formal complaint, often from a person with a disability. But real change also requires
follow-through.
Anita (Amy) Ashdon of Walpole, Mass., moderates an Internet group
called Independent Living (http://health.groups.yahoo.com/group/independentliving), posting under the name
“charmedcripchic.” The 38-year-old, who has spinal muscular atrophy and other health issues, would like to
see more people participate in ADA implementation.
During her 15-plus years of disability rights activism, Ashdon says, “I’ve noticed a small handful of people with disabilities (pwds) who work very hard toward positive change. However, the majority of pwds I meet don’t advocate for themselves.
“They want to commiserate together and complain about things, but don’t take time to make a few phone calls, write one letter, or even get agencies paid to implement the ADA codes and disability rights laws involved,” she explains.
The result is that when she calls an agency to report a common problem, she’s often told, “‘Well, you’re the only call we’ve received...’ Meanwhile pwds around me tell me, ‘You’re an activist, fix this issue for me.’”
Independent Living has issued an Access and Advocacy challenge to group members, asking them to tackle just one access issue in their communities over the next year, or to cheer on and support other advocates working for change.
“Everyone, disabled or not, do something when you see unfairness going on,” Ashdon urges. “Tell the handicapped parking ‘stealer’ to get out, report problems to managers, call your disability rights organizations and follow it through to the end. Write a blog or book to document to the world your experiences and raise awareness. Don’t just sit there, do something.”
The articles that follow document some of the many ways the ADA did — and didn’t — make an impact in the past year.
At Long Last, The
Elevator Cometh
For the first time, Marilyn Kurutz is able to attend
Duquesne, Pa., City Council meetings in person. No more sitting in the downstairs lobby, squinting at a
fuzzy black-and-white TV set and shouting into a microphone.
“They’ve got an elevator at City Hall — finally!” Kurutz crowed in March. The 56-year-old civic-minded resident, who has adult-onset mitochondrial myopathy, fought for almost three years to attend council meetings held on the inaccessible second floor of City Hall. (See “A Victory — Followed by a Long Wait,” July-August 2005.)
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Marilyn Kurutz and her new lift
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Back in 2003 Kurutz and Duquesne Mayor Phil Krivacek reached an agreement through the U.S. Department of Justice ADA mediation program. But the agreed-upon solutions — including an elevator and bathroom remodeling — never seemed to materialize in the cash-strapped city. Meanwhile, the mayor refused to move the meetings to a more accessible building, and instead, set up the TV set/microphone in the lobby.
Duquesne (“du-KANE”) finally completed the renovations this year after receiving a government grant. Despite the delay, Kurutz believes the ADA mediation played a big part in making things happen.
“The mediation made it clear to the city that this is the law,” Kurutz says. “Before that, they thought I was just somebody blowing smoke. It wasn’t real. The ADA mediation made it real to them.”
To ensure the issue stayed alive Kurutz says she kept asking the city about it, and gave city officials information on obtaining government grants. She also stayed in contact with the DOJ.
For more information on the ADA mediation program, call the ADA Information line at (800) 514-0301, or visit www.ada.gov. |
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DBTAC's Mission
Threatened?
DBTAC (“Dib-Tack”) is the acronym for
a Disability and Business Technical Assistance Center, which provides free, local resources on all aspects of the ADA. These centers also are known as ADA and Accessible IT Centers.
But now the DBTAC mission of helping communities to implement the ADA is under review, and may be modified to focus more on research gathering and implementation, especially in the area of employment. Disability advocates worry this may mean the end of the widely respected program as it now exists.
The new DBTAC funding priorities are part of a larger proposed priority shift for several programs administered by the National Institute on Disability and Rehabilitation Research (NIDRR).
Under the proposal, DBTACs would identify areas in which research is needed and conduct targeted research and development to “help individuals with a variety of disabilities reach their full potential on the job.”
Employment of people with disabilities hasn’t improved under the ADA. The employment rate has increased only 1 percentage point in 20 years, from 34 to 35 percent, according to a recent National Organization on Disability/Harris survey.
But the American Association of People with Disabilities warns that the new priorities would “essentially eliminate” funding for DBTACs’ current mission of providing free technical assistance, information, training and materials about the ADA to individuals. The centers are heavily used by people with disabilities and their families, as well as employers, businesses, architects, designers, local code officials, state and local government officials, educational institutions and organizations that pro-vide disability services.
The 30-day public comment period ended in March and the DBTAC priorities are under review by the Department of Education, which declined to comment. For more information, contact your regional DBTAC by calling (800) 949-4232 or visiting www.adata.org. |
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The High Price of
Winning
Time and a hip replacement had exacerbated the effects of Elizabeth Kimrey’s Charcot-Marie-Tooth disease (CMT). The 60-year-old psychologist, who uses a walker, was so fatigued that her doctor recommended she cut back from five to four days in her job at the North Carolina State University counseling center in Raleigh.
By working “on-call” hours each week — fielding after-hours and holiday calls at home — Kimrey found she could be in the office four days a week, but still get paid for five. “This was a perfect way for me to earn a day off but still work full time,” she said. “When I consulted an attorney familiar with the ADA I was told it was clearly a reasonable accommodation.”
The university’s Office for Equal Opportunity agreed and recommended that her supervisor provide the accommodations.
What had started well then became difficult. The trouble was, on-call hours are prized and shared by several counselors. Kimrey was claiming one-third of the available hours.
A couple of counselors were upset about the accommodation. One quit speaking to her. The supervising psychologist refused to fully implement the accommodations for seven months, until Kimrey threatened to file a formal complaint. When he finally granted the hours, it was with a limitation that violated the ADA, but Kimrey decided to say nothing.
At the end of the 2005-2006 academic year, she retired from the university and returned to private practice.
“It’s hard for me to ask for help, and I know that I’m going to need more adjustments to the hours I work in the future. I need to be in a situation where I can make those adjustments without having to upset other people so much.” |
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ADA Versus Family Farm
Law
It was an unlikely contest, but when the ADA and a law designed to look out for the family farmer came into conflict earlier this year, the ADA scored the knockout blow.
In December, a U.S. District Court in Nebraska struck down a law banning corporate farming because it discriminates against those with physical disabilities, reported the Disability Policy Collaboration (DPC), a legislative lobbying group of the Arc and United Cerebral Palsy.
The plaintiffs, including a farmer who uses a wheelchair, argued that the ban violated the ADA by requiring at least one family member who owns the farm to be involved in day-to-day physical activities. This discriminated against people with dis-abilities who are involved in the business but not the physical aspects of running a farm, and/or who may not be a member of a family that runs a farm.
Until this ruling, the corporate farming ban was a model for states trying to limit big businesses’ involvement in farming, and had withstood repeated legal challenges. |
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Pet Peeves
Ode to the Accessibility Designers
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Next Christmas I’m giving
special awards
to some people who don’t have
a clue
what’s like to be living with
CMT
each day, the whole year through.
For starters, the Rest Room engineer.
(Brother! This guy is a peach.)
He has placed all the paper towel racks
just a tad above and beyond my reach.
And
then there’s the great Curb Cut planner —
curb cuts are
great, my friend,
but you’ve made easy access one end of
the block,
why no cut at the other end?
To
the guys who plan Handicap parking —
some are smart,
others don’t know what for —
they paint spaces at the far
end of the lot
instead of up close to the door.
I
could go on and on, but I’m ending my list
with the
Do-Gooders brimming with cheer,
who think if a person is
in a wheelchair
he’s
an idiot or he can’t hear.
I’m offering a perk with each award
(I
think that is only fair).
I will let each one of these
spend one day
in my battery scooter or chair.
Anne Gasser, West Reading, Pa.
Charcot-Marie-Tooth disease |
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What Were You
Thinking?
Unfortunately, in the land of the disabled there are no “one size fits all” accommodations. But common sense should be a factor.
I appreciate handicapped bathroom stalls and their helpful rails — but who decided the best place for the toilet paper dispenser is above the bar that’s supposed to be my helping hand? If most disabled people use the bar as I do, it’s to get some leverage to get up and off so as to go on about my business.
When there’s a super-large-roll toilet paper dispenser blocking the area above the bar, the only oomph I get is a head bang into plastic and a bounce back onto the porcelain surface I was trying to escape. Maybe the rear rail works for others, but I just haven’t gotten the hang of a baseball pitcher’s warm-up wind to reach behind me and somehow propel myself up and forward. I’ve become pretty bendable with the muscle loss, but Gumby I’m not.
Then there are those 90-degree ramps that enable businesses to qualify as accessible. For people like me who walk with difficulty, they’re like taking a miniature mountain climb. The downhill walk can be just as dangerous as the uphill walk is difficult.
Recently, I stopped at a rest area in the flatlands of Florida. When I first saw the steep ramp to the restroom, I thought it was somebody’s idea of a joke. Well, the joke was on me.
I huffed and puffed my way to the top with the aid of my daughter. On the walk down, it occurred to me to just lie down and roll the rest of the way, but it’s next to impossible to get me back into a standing position. I did make mention of this dilemma on their comment card.
If enough of us speak up, we can raise awareness of what “accessible” really means. There’s no single answer for every disabled person, but there are solutions that can work for the majority.
The Hawaiians call the art of conveying one’s thoughts to another “talk story.” Those of us with disabilities have to “talk plenty story” to those with whom we share the land — our able-bodied neighbors
Kristal Hardin, Tampa, Fla.
Limb-girdle muscular dystrophy |
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