I read Barbara Crowley's "Rolling in the Emergency Room" (July/August) with the laughter that comes from having been there. I received fine medical care from some of the physicians and hospitals I used as a Florida resident, but some of my experiences were similar to Ms. Crowley's.
When my appendix became inflamed, the emergency room resident decided I had a sexually transmitted disease -- without testing me: friends who took me to the ER were male classmates from an integrated engineering program. I was sent home on antibiotics. Later I was back in the ER and was advised I probably needed a psych evaluation because I was not "adjusting to becoming disabled." A rheumatology resident went to the Chief of Surgery to explain the situation: the Chief of Surgery took out my appendix as it ruptured. As the residents were getting ready to roll me down to the operating room they were still telling me my high white count and symptoms were psychosomatic -- I was undergoing needless surgery.
When my feet were amputated I found that none of the acute-care rooms had wheelchair accessible bathrooms. I was immediately transferred to the rehabilitation unit. When I went back in for an infection, I had to go to the ground floor to an accessible public restroom with a nurse towing the IV pole. That was really interesting because I was in isolation due to an infection so the bathroom had be cleaned over, each time I used it. The next time I was in the hospital, I asked for a room in the rehab unit as a reasonable accommodation. I got it. But his was not a permanent solution to inaccessible patient rooms.
I started advocating to get my local community hospital to build wheelchair accessible rooms, with accessible bathrooms and lower beds. That is an expensive process for a hospital built before the ADA was enacted, but my hospital decided that their mission of meeting the needs of the entire community, including those with disabilities, required it. Now each acute care floor has one wheelchair accessible patient room. Working to get room signs that meet the needs of those with low visual or who are blind, as well as getting accessible door hardware, was also part of the advocacy.
It is time to question the medical community as to why their facilities are not accessible. I work regularly with my hospital on accessibility issues, including reasonable accommodations for employees with disabilities.
The accrediting institutions for hospitals and other medical care facilities require each facility do an self-evaluation of their accessibility. I have helped perform a few accessibility reviews; the response to architectural barriers is as varied as any other business. Advocacy for accessible medical care facilities is just like any other accessibility advocacy: we just need to get out there and do it.
Barbara L. Stoops, JD
Disability activists are starting to take action. In July, disability activists sued Kaiser Permanente HMO in California for access violations.
Press them on all kinds of hospital access.
I'm one wheeler who has consistently complained to a national hospital chain regarding latex allergies, the height of counters, problems with service animals and orientation for hospital patients with low or no vision. I'm also after them about their paperwork, because they don't provide it -- or their "patients' rights" statements -- in alternative formats. They also have gotten my criticism over a lack of on-call sign language interpreters.
Wheelers aren't the only ones who have problems with hospitals. If we activists are going to deal with them about one disability, we might as well press them on all the kinds of access they're supposed to be providing -- for all kinds of disabilities.
Catherine S. Perel
Baby Doe at 18
One day during a break in the National Leadership Conference for Youth with Disabilities in Washington, D.C., this summer, I went home to find Ragged Edge in my mailbox, with its article by Lisa Blumberg ("The Natural Destiny of the Bloomington Baby," July/August). I read it on my ride back to the Bethesda Hyatt, where I was managing the conference.
I couldn't help thinking that Baby Doe, who would be 18 now, would be eligible to attend this conference. Many of the participants at this conference, I realized, might have been killed at birth, had they been born to different parents, or in a different situation.
It was a sobering reminder of why we are doing the work we are doing. It was one of the many moments when The Rag has focused me on reality. Thank you for keeping the truth in our faces.
Dale S. Brown
Historically, many of us have maintained that if nothing is wrong with having a disability, then there is no need for cure ("Are we against cure?" July/August). Society teaches us not to be proud, but we defy this.
Personally, I dispute the word "cure," because disability is very often not caused by a disease. In my own case, Jerry Lewis calls my disability a "disease." When I took biology in high school I learned that a characteristic effect of a gene is called a "trait." I have a trait, not a disease. No disease, no cure. The research that they are doing may someday produce something that could change how genes work. Would this ability to manipulate be called a cure? I like to call it an application.
The next question looms in my mind: if they invented an application that would work on me, would I take it? The first word that pops into my mind is, "traitor!!!" In truth, I don't believe that anything they come out with will be a magic pill that will turn me into the next Schwarzenegger. It might offer me a partial result for which I do not harbor great expectations.
Do I need this? If it keeps me not dead yet, I will take it. Beyond that, if it allows me a simpler way to maintain my independence then it could be a fair trade-off because I would merely be replacing any applications that I am using now for a different set of applications. This would be just another artificial means that I would rely on.
Johnson Cheu's poem, "The Labor of Shoes" (July/August) originally appeared in Slide magazine.
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