Editor's Column - June 2012

On Wednesday, June 27, a public forum on disability disclosure in employment will be held at the Ramsey County Library in Roseville. It will give us an opportunity to get a better understanding of the laws concerning employment disclosure—what we as people with disabilities should disclose and what we should not. There’s a two-sided challenge: we don’t have to explain our disability to a potential employer, but we often do have to ask for accommodations. For the disability community as a whole, as well, non-disclosure presents a double-edged sword. If we don’t disclose our disabilities, society will never know how many people with disabilities are really working and we can’t know when we’ve reached the goals that have been set for employment. That holds true for job promotions and pay, too; are people with disabilities getting the same opportunities and pay as our peers? We know, for instance, that women have the same rights as men to work at any job and to receive equal pay, and progress on those rights is trackable because sex is a known demographic characteristic. Check out this forum to find out what we need to disclose to ensure a protected work life and to make better employment opportunities for our brothers and sisters, holding our government to its commitments.

I hope we are not getting into a trend, but it’s worrying to see some long-time nonprofit organizations failing because of lack of funding. One survival response has been merger, although it is not always a viable answer. It’s very hard for any organization to give up its autonomy in blending into a larger group. The risk is that an organization will lose its passion and drive in becoming just another program of a larger entity. As an example of another kind of merger, Goodwill/EasterSeals and the Work Incentive Connection have joined together, and so far it looks as though this union will be successful and everyone will benefit.

Last month I told you about United Cerebral Palsy (UCP) and it’s worth bringing it to your attention again. It would be hard to imagine a disability rights movement without UCP; the camaraderie and support networks among parents of children with cerebral palsy led to many of the laws that protect the rights of people with disabilities. UCP, since 1949, has been known as one of the largest and most effective nonprofit health organizations in the U.S. It’s one of the biggest fundraisers and has been one of the mainstays of the disability community from the beginning of the disability rights and self-advocacy movements. UCP was the first organization to push for the right for people with disabilities to vote and had considerable impact on getting the ADA passed. Yet our Minnesota affiliate could not keep its funding alive, and will have to close its doors on June 30 unless supporters can reverse the board’s decision to dissolve. You can contact them with your support at (651) 646-7588 or phonedirector@ucpmn.org

Now this month we are aware of funding problems at VSA Minnesota, the arts organization. VSA started out in 1974 as the National Committee—Arts for the Handicapped, then changed its name to Very Special Arts. In 2010, the organization just went with the acronym VSA. The organization was founded by Jean Kennedy Smith, one of President John Kennedy’s sisters, and it receives support from the Kennedy Center’s Accessibility Office. There are 52 VSA arts affiliates around the world. They provide what the founders believed every child and adult with disabilities deserves: a high quality learning experience in the arts, complete access, and the fundamental right to the opportunity to develop their skills. Christina Pilli of Bryn Mawr College writes about the effects of art on the brains of underprivileged children. Her research has proven that children clearly benefit, and that they can advance their development of cognitive, social and motor abilities through creative activities like dancing or movement, drawing and music. Knowing this, we all can recognize the real travesty of losing this kind of programming for people with disabilities. Former Secretary of State George Schultz said, “The minute you start talking about what you’re going to do if you lose, you have lost.” So we have to be optimistic and start considering how we can support this organization and the next, otherwise we have lost. Call (651) 332-3888 or write info@vsamn.org

Those of you who have had to deal with some major or minor surgery will know how little I’m looking forward to a “simple laparoscopic procedure” to remove my gallbladder later this month. I’ve been wondering lately why we have body organs that we don’t need, like the appendix, gallbladder, tonsils, an extra kidney, an extra lung—and then we have only one of others that we absolutely have to have, like the heart and liver.

Why the backups on some organs, no backup on others, and some we just don’t need? But of course our maker did a pretty good job, all in all, in designing our bodies. I’d have liked some better protection around the spinal cord and I’ve got friends who’d like to have a spare heart and frontal cortex, but we just don’t get answers for some of our questions. Like how come it so often rains on Saturday and so seldom on Monday?

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