Disability Futures

A brilliant article by Jack Holmes of New York Magazine on the study states:

…a loving and talented father who advocates for more awareness and acceptance about Down Syndrome. His graphic novel, “Metaphase,” is the world’s first to feature a hero with an extra copy of the 21 Chromosome – Down Syndrome. Ollie, the main hero, is born with heart problems and inherits social misperceptions about persons with Down Syndrome. With his father, also imbued with phenomenal superhuman powers, fight prejudice as often as any arch-villains.

Since the early 1970s, the ethical norm governing counselors involved in testing and screening for genetic conditions related to reproduction has been strict neutrality. Counseling about reproductive genetics was to be patient centered but nondirective. Many advocates for people with Down syndrome believe that high abortion rates following a diagnosis of this condition show an unfounded bias against those with Down syndrome. These advocates have succeeded in enacting federal and state legislation that requires women who receive a prenatal diagnosis of Down syndrome to receive positive information about the condition, thereby ending the nominal goal of value-neutral counseling and setting the stage for further normative shifts in clinical reproductive genetics as counseling expands because of cell-free testing.

If you are of a certain age, you know who Travis Roy is. He’s that hockey player, the kid from Maine who was paralyzed 11 seconds into his first shift, in his first game, for Boston University.

"...The quality of my life is very high. Every day I roll out onto this deck, into the sunlight, I think how fortunate I am.”

He threw himself into the foundation that bears his name and it has handed out $3.5 million worth of equipment — wheelchairs, lifts — to more than 1,000 people with spinal cord injuries. It has given more than $2.5 million to research. It’s gotten bigger with time.

Almost every day, he reads letters from people pleading for help.

“It’s never just the wheelchair,” he said. “It’s a little piece of independence, a little piece of dignity.”

There was a logger in New Hampshire, Wayne Snow. He was paralyzed in a logging accident. Travis read his letter and bought him a wheelchair with tank tracks. Wayne Snow is back at work, logging in his wheelchair.

Today, the U.S. Department of Homeland Security's Federal Emergency Management Agency (FEMA) and Portlight Strategies (Portlight) announced an agreement that will increase preparedness awareness for people with disabilities in the event of natural or man-made disasters. The agreement aligns with FEMA’s commitment to inclusive emergency management by partnering with disability organizations and community leaders who serve the whole community at the local level.

“As we celebrate the 25th anniversary of the Americans with Disabilities Act, we are also reinforcing our commitment to serving the whole community before, during and after disasters,” said Craig Fugate, FEMA Administrator. “By having preparedness plans and thinking ahead, individuals, families and communities will be ready to respond to these events when they occur.”

The new partnership will bolster working relationships with state, local, tribal and territorial emergency managers to encourage including people with disabilities in planning.  It will also provide information so people understand the disaster risks in their area. By evaluating their own individual needs and making an emergency plan that fits those needs, people can be better prepared.

Some key highlights from the agreement show that FEMA and Portlight will:

• Participate in training events and natural and simulation exercises, drills, and discussions focused on emergency preparedness and lessening the impact of disasters;
• Share operational practices that work well and that may be adapted to make improvements in service delivery and support community resilience and accessibility for people with disabilities and others with access and functional needs; and
• Share research-based emergency management data and information and training experience and expertise before, during, and after disasters.

We all must take a skeptical look and acknowledge the role that money and power play in end-of- life decisions, and how assisted suicide is being used by some health care companies and decision-makers to increase their bottom line by denying treatment.

Physician assisted suicide disproportionately affects the poor and people living with disabilities. That explains, at least in part, why there is widespread opposition from virtually every disability rights group in the nation, including the National Council on Disability, the American Association of People with Disabilities (AAPD), the National Council on Independent Living (NCIL), the National Spinal Cord Injury Association, the World Institute on Disability and FREED.

Assisted suicide doesn't exist in a vacuum as proponents would lead you to believe with their simplistic slogan. Rather, the current profit-driven health care system urges doctors to reduce care in order to cut costs. A lethal prescription costs no more than $300. Compare that to the cost of treatment for most long-term medical conditions and serious illnesses that can run into hundreds of thousands giving insurance companies or others making treatment cost decisions a direct financial incentive to suggest assisted suicide in lieu of expense.

From the independent living movement there was the focused, kind and persistent Judy Heumann. She’s been a wheelchair user most of her life. Denied early access to education because her wheelchair was a “fire hazard,” her mother fought to have her included. Judy went on not only to academic success but also to become a major leader on ADA issues and beyond. In the decades since the ADA she has taken the fight for dignity and equality for people with disabilities global. She played a major role at the World Bank, and is the top official at the U.S. Department of State working on disability issues around the world.

Arlene Meyerson has been called “the brains” of the ADA operation. A brilliant legal advocate, she has brought together literally hundreds of disability advocates and organizations over decades on a variety of disability issues. She wrote, “While some in the media portray this new era (ADA) as falling from the sky unannounced, the thousands of men and women in the disability rights movement know that these rights were hard fought for and are long overdue. The ADA is radical only in comparison to a shameful history of outright exclusion and segregation of people with disabilities. From a civil rights perspective the Americans with Disabilities Act is a codification of simple justice.”

A 2-minute video brought to you by the Ready Campaign and Ad Council showing people with disabilities taking charge to prepare themselves and their families for emergencies. The Public Service Announcement emphasizes the Ready Campaign’s four building blocks of preparedness - Be Informed, Make a Plan, Build a Kit and Get Involved. This video is available with open caption, a certified deaf interpreter and audio.

They came from Armenia, Azerbaijan and Bangladesh.

From Kazakhstan, Lesotho and Mongolia.

From Nicaragua, Nigeria and China. From 33 countries in all.

They were people in wheelchairs, on crutches. Some were deaf or blind. And they all wanted to find out how their country could learn from the Americans with Disabilities Act (ADA), which banned discrimination based on disability in employment, government services and public accommodations.

That act changed the way people with disabilities in this country wanted Americans to understand their problems — not as issues of health but as ones of civil rights.

But the problems in other countries are often much bigger than those faced by people with disabilities in the U.S. Often when other countries pass disability laws, there is little enforcement of those provisions. Poverty and attitudes are also barriers.

Patience Dickson-Ogolo, from the Advocacy for Women with Disabilities Initiative in Nigeria, said disabled women in her country often lack basic rights: They have trouble opening bank accounts and they are discouraged from marriage. Dickson-Ogolo, who uses a wheelchair, is an exception; she attended the conference with her husband.

Krishna Sunar, of the National Association of the Physical Disabled in Nepal, spoke about the April earthquake that killed or injured some 30,000 people. He asked that the U.S. help make sure reconstructed government buildings include wheelchair ramps.