Posted on October 13, 2015
Now that the ballyhoo behind the silver anniversary of the Americans with Disabilities Act has died down, please allow me (with considerable regret – believe me) to voice this uncomfortable truth: The ADA, landmark legislation though it is, capable at any turn of protecting the rights of people with disabilities, continues to spawn negative consequences.
As Dr. Ronald Meinert and Francis K. O. Yuen noted in their book, “Controversies and Disputes in Disability and Rehabilitation,” the ADA trivializes real disabilities by the inclusion of marginal ones. The book is available at Amazon, but it’s expensive. You can read the first chapter for free on Google books.
Let me speak to my own experience as a quadriplegic for the past 29 years – humor me if I call it a “real disability.” The first thing I notice anywhere I go, anywhere, is that I usually can’t get an accessible parking spot for my van with a wheelchair lift. Those nice wide spots are usually taken by folks who seem to walk just fine. Oh wait: They have invisible disabilities, right? Well, some do, but for so many others “invisible disabilities” are just a convenient excuse. The ADA says that anyone with a permit can take these nice wide spots even if the spot is marked “Van Parking.” The ADA doesn’t worry about wheelchair users who are forced to park without accessible spots.
As a vocational rehabilitation client and counselor, I also have noticed a change in VR customers over the years. There are now emotional disorders including a behavioral disorder for students who refuse to listen, and I was skeptical when athletes came in with learning disorders and all their parents wanted was tuition for college. I’ve heard them recite their child’s rights under the ADA more than once.
Now perhaps most egregious of all is when people with what I consider a marginal disability take non-competitive state or federal jobs (https://www.opm.gov/policy-data-oversight/disability-employment/hiring/) because of their disability. There are people out there with real disabilities who need these non-competitive jobs; instead they have to compete with people who could do other jobs.
Let’s face it: The ADA gets used and abused by selfish people and through frivolous lawsuits. In Wenzlaff v. Nations Bank, someone filed in a U.S. District Court for protection under the ADA based on pregnancy. Isn’t reproduction participation in a normal life activity? (I have two children – I’m pretty sure it is.) But wait: In Bragdon v. Abbott, the U.S. Supreme Court determined that infertility is a disability! Which is it? Come on: Some conditions are not disabilities, especially if they’re temporary in nature or if they are completely ameliorated with treatment or medication.
The ADA has given people with disabilities their long overdue rights. But for selfish people without real disabilities (you know who you are) who wish to take advantage, the path is well worn. For people with real, challenging disabilities needing assistance, sorry: Resources are dwindling and the line is getting longer … each day, and with each lawsuit.
This entry was posted in accessibility, Americans with Disabilities Act, civil rights, community living, employment, inclusion, people with disabilities, transportation, Uncategorized and tagged ADA, Americans with Disabilities Act, Bragdon v. Abbott, challenging disabilities, Dr. Ronald Meinert, Francis K. O. Yuen, invisible disabilities, marginal disabilities, non-competitive jobs, U.S. Supreme Court, vocational rehabilitation.
Posted on June 26, 2015
After leaving the hospital with my new injury 29 short years ago, I rolled into a Center for Independent Living (CIL) because I needed help finding Personal Care Assistants (PCA) so I could live independently in my own home. I received no real help, just a very outdated list of phone numbers. I was both disappointed and bewildered. I was even more surprised to learn that providing this kind of help was not something that CILs are expected to do.
Two and a half decades later I’m sitting in my office with a newly injured quadriplegic. He just learned to breathe on his own again and just got out of rehabilitation. He wants to go to work and he asks me, “Who will take care of me?” I don’t know what to say because the news isn’t much better than it was 29 years ago. Insurance will only do so for so long and Medicaid waivers only help if you’re destitute. There still aren’t many options. One of the best options is to offer room and board as partial pay, especially if you need a live-in PCA. Good luck trying to find one. I explained this to the young man who had heard of the “Independent Living Movement” and he asked if they could help. Well…
In the Independent Living Movement, disabilities are not viewed as a problem to be solved. The problem is with society and how it deals (or doesn’t deal) with people with disabilities. It’s about the way the environment was designed without us in mind. Who can argue with that?
The Independent Living Movement is a philosophy that emphasizes consumer choice and control. It is said to be guided by and for people with disabilities based on the idea that we are the experts in what we need — can’t argue with that either.
Advocacy, politics and policy are indeed very important. However, there is more to living independently than having a great system of advocacy out there over our heads. If we are to live, work and play in the community we need certain assistance (including assistants) and accommodations. These are immediate needs and it’s hard to see the big picture when you’re stuck in bed with no personal care assistance. That can send a person right back to an institution.
What can be done? I wish I could tell you to call your representative and senators and tell them to vote for House Bill “X,” or Senate Bill “Y,” but there’s no pending legislation that I know of that’s out there. Of course, you should still call or write your members of Congress (Go To: https://www.opencongress.org/people/zipcodelookup) and let them know what you’re going through—A butterfly flaps its wings…. Contact your state and local representatives as well.
There is some research going on:
- The Family Support Research and Training Center recently conducted a Family Support Dialogue. The Dialogue has concluded, but you can give the Center a call to see what they learned and what they’re doing with it. Their contact information is at: http://fsrtc.ahslabs.uic.edu/research/needtoknow/
- The Community Living Policy Center http://clpc.ucsf.edu/ housed at the Institute for Health & Aging of the University of California San Francisco has an active NIDILRR (now part of ACL) funded grant that aims to identify methods of improving the long-term services and support (LTSS) system in the states, improve data collection on community living policy, and develop a strategic plan for community living research. Check them out at http://clpc.ucsf.edu/.
Family support would be a last resort for me, but I welcome all research and I hope it can lead to policy changes that help people who need more help than you can imagine. For instance: Perhaps CILs could keep an updated living national or regional data base of caregivers for people with disabilities who need them. The Independent Living Movement could advocate for policy change and lobby politicians for funding to support this.
In your personal life, is the Independent Living Movement consistent with your needs for independent living? How has the Independent Living Movement helped you to meet your goals of living independently in the community?