MDA devoted to aiding people with disabilities
Tucson, Arizona | Published: 09.26.2006

Naomi Ortiz uses protests against the Jerry Lewis MDA Labor Day Telethon as the catalyst for a series of false attacks against our organization. However, there was only one protest in the entire country this year — six people in South Carolina. Even a few years ago when protests peaked, they never amounted to more than a handful of people in scattered cities.
People who continue to trot out the usual list of discredited arguments about the Muscular Dystrophy Association and its telethon have either had their heads buried in the sand for many years or are being purposely disingenuous. A quick visit to our Web site (www.mda.org) would dispel any notion that MDA doesn't strongly support the dignity and civil rights of people with disabilities.

In fact, MDA was a pioneer in advocating for people with disabilities. At a time when children and adults with disabilities were often hidden away and kept from their rightful place in society, MDA gave them a public face and a voice. MDA was also an advocate for the Americans With Disabilities Act, the most important piece of disability rights legislation ever approved in this country.
On the local front, MDA strongly backed the Inclusive Home Design (visitability) Ordinance that was approved by the Pima County Board of Supervisors. This ordinance is now used as the model for other communities across the country trying to improve access for people with disabilities.
It was shocking to see an attack on the kind-hearted people who donate funds to support our research and services programs. Their compassion shouldn't be equated with pity, and they should be thanked, not assailed, for caring about their fellow human beings.
However, these lapses of logic and fact pale when compared to the incredible gall exhibited in the "magic pill" argument. To claim to speak for "most of us" in stating that people with disabilities wouldn't accept a cure is outrageous. People who have a progressive or fatal disease are in a much different position than someone with a stable condition that results in disability.
Critics should tell the 40-year-old husband and father of three small children who's dying of ALS (Lou Gehrig's disease) that he doesn't really want a cure. Or perhaps she should explain that position to the parents of a child who will never live to see adulthood because of a deadly neuromuscular disease.
Critics state that survival for people with disabilities is about jobs, dignity, independence, access to technology and civil rights. While we actively support progress in all of those areas, we're concerned with the more basic elements of survival — breathing, moving, speaking.
We provide help with technology to allow freedom of movement and the ability to communicate, both essential to holding a job and having independence. We have summer camps for children that do a fantastic job of boosting self-esteem and confidence. We offer programs that recognize and encourage those who advocate for civil rights. In other words, donations to MDA do all the things that critics claim to support.
Over the years, I've had the pleasure of working with many people living with disabilities imposed by neuromuscular diseases. I've never felt pity and certainly never sensed any lack of dignity. After all, dignity isn't something bestowed upon you by others, it comes from within.
We at MDA are proud to call Tucson home and we're deeply grateful for the tremendous support we've always received from the wonderful people here. Tucsonans can be very proud of their contributions to the health and well-being of Arizonans living with neuromuscular diseases, and to the progress being made to find treatments and cures for these disorders.
Caring, compassion and charity have always been considered virtues in this country. Let's hope that never changes.
Write to Jerry Weinberg at mda@mdausa.org.
http://www.azstarnet.com/allheadlines/148225