When Quest published a short item in our Research Updates last year (Vol. 4, No. 4) reporting that women with disabilities avoid routine gynecological services, little did we know it would lead to feedback about the problems disabled people face in the health care system in general. This report, coupled with recent features on language related to disabilities (Vol. 4, No. 5) and on managed care (Vol. 4, No. 3 and Vol. 4, No. 6), generated many letters and prompted an MDA staff member to tell us about his experiences on the front lines.

PATIENTS SIT ON TABLES, PERCH ON CURBS

"I have yet to see a waiting room that has any kind of chair that I can get up from without a major struggle," wrote one man with muscular dystrophy from Montana. "I have sat on heat registers, tables and borrowed office chairs, or simply stood and waited."

Tom Bush, MDA's director of Online Services, needed an MRI scan a few years ago at a New Jersey hospital. Bush, who's 55 and a large man, has spinal muscular atrophy and uses a power wheelchair. The MRI scanner didn't have an adjustable table, and the wheelchair was too low for Bush to transfer from it to the scanner table.

"They had to take a gurney out to the parking lot," Bush recalls, "and put the wheelchair up on the curb, which was high enough for me to slide onto the gurney." From the gurney, he was able to slide onto the scanner table. On another occasion, six people had to lift him from his wheelchair onto an operating table for some minor surgery.

"This sort of thing causes embarrassment, risk, trauma, stress and a feeling of being vulnerable," Bush says. "The big danger is that people won't even attempt tests and surgery. These things are an extra, unwelcome stress when you're about to undergo a procedure."

He also recalls his recent experience at a group practice clinic. On approaching the building, Bush saw that there were only two parking spaces out of about 100 in the clinic's lot that were designated as handicapped. Next, the clinic's "automatic door opener" took so much strength to operate that, he says, "if you could press it, you wouldn't have needed an automatic door opener." Inside the offices, he found inaccessible examining tables.

When he described the problems to a staff member, she politely told him to write a note and drop it in the suggestion box -- but here was yet another obstacle. The suggestion box was mounted high on a wall, far out of reach of someone seated in a wheelchair. "So the first suggestion was to lower the suggestion box," Bush says.

SKIPPING THE PELVIC

"When we do physicals on disabled women who are entering clinical trials, I keep my fingers crossed that they'll refuse the pelvic exam," confessed one doctor from the Midwest. "We really don't have the facilities for it." In one recent case, however, a woman insisted on the complete exam, and the hospital couldn't provide it. "I don't remember what we did," said the doctor, who sees many patients with mobility impairments. "I think we sent her somewhere."

Apparently, even breast exams on women who use wheelchairs pre-sent too much of a challenge to some physicians, such as the one who attended Donna Finke, who has spinal muscular atrophy and wrote about her tragic experience in the September/October 1997 issue of Living SMArt, a newsletter for people with SMA. Finke's doctor did little more than tell her "wear your seatbelt and eat broccoli" at her annual physicals, says an editorial in the same issue.

In July 1996, Finke felt a thickened area in her left breast and thought it might be a rib sticking out because of her curved spine. It wasn't. Finke's diagnosis was breast cancer, which was already fairly far along. Despite a mastectomy, chemotherapy and radiation, the cancer, diagnosed late, spread to her liver and skull.

NOT ASKING, NOT LISTENING

"In my area, doctors, therapists and nurses know little or nothing about muscular dystrophy," wrote a 54-year-old Louisiana man with limb-girdle muscular dystrophy in response to our language survey. "I had a doctor chewing me out about my weight, telling me to get off my lazy butt and go for walks. My condition has progressed to the point that when I fall, I cannot even sit up without help."

An Arizona man with amyotrophic lateral sclerosis wrote in response to that questionnaire: "What bothers me most is the way most doctors treat me when I see them at appointments. Usually my wife or occasionally one of my adult daughters may go with me. Most, but not all, doctors will speak to whoever is with me but not directly to me. Even if I have my speaker machine that works fairly well, they tend to not pay attention to me, the patient. That is very irritating to me."

WHAT TO DO

Invoke the ADA. Obstacles to physical access to doctors' offices, clinics and hospitals can and should be remedied. Many such obstacles are violations of the Americans with Disabilities Act (ADA) of 1990, which sets higher standards of access for health care facilities than for general businesses. For instance, the ADA requires health facilities to designate 10 percent of their parking spaces for handicapped parking and raises that to 20 percent if the facility specializes in serving people with mobility impairments. Unless correcting the problem poses an "undue hardship," it generally has to be done. In a multiphysician facility, the hardship imposed by, for example, one adjustable exam table probably isn't "undue."

Chris Rosa of New York, an MDA board member who has Becker muscular dystrophy, makes the point that hospitals are generally more accessible than office buildings. He stopped seeing one general practitioner whose building was inaccessible. Rosa says that, since most MDA clinics are located in hospitals, building accessibility isn't usually a problem.

Rosa believes it "compromises confidentiality" for a patient to have to bring a third person to a doctor's appointment to help with lifting or positioning. "It's not dignified. Medical concerns are deeply private," he says.

"I've been going to the same MDA clinic since 1976 and it has always been pro-active in providing reasonable accommodations so I would receive equal benefit of the services available," he adds. "Now that I require more assistance, they've been consistent in providing it," he said. This help includes asking staff members to help with positioning and making a lift available when it's needed for transfers.

Rosa said he believes most MDA clinics are generally accessible and that clinic staff members "work cooperatively to accommodate the needs of those who are served by MDA."

For an example of an adjustable examination table, you can call Dr. Sandra Welner, who designed and markets such a table, at (301) 587-6396, or send her e-mail at welnersmd@aol.com. See others in Resources, in this issue. For information about physical access to offices and other facilities, contact the Architectural and Transportation Barriers Compliance Board in Washington, (800) 872-2253, info@access-board.gov, http://www.access-board.gov/.

Know who's really in charge. Tom Bush's original submissions to the suggestion box didn't get a response. On his second try, he copied the executive director for the group practice and got a perfunctory reply that the matters were being "looked into." The third time, Bush wrote directly to the executive director and, in less than a month, received the response that all matters had been resolved and that an adjustable examining table was on order.

Don't over- or underestimate the impact of your chronic disorder on the new problem. This seems to be a double trap. Finke, who's now fighting for her life, made the mistake of assuming that her new health problem -- a thickened area in her breast -- was due to her chronic problem, a curved spine. "Donna Finke ... blames our misconceptions that if you have SMA (or some other problem), you are somehow immune to diseases and illnesses that strike others -- like cancer," writes Living SMArt editor June Price in her editorial on the subject.

She continues, "Donna Finke says she feels compelled to save others from the harsh lessons she's learned, stressing that people with disabilities must not ignore their total health care, as diseases like cancer may not ignore them."

On the other hand, doctors and patients may underestimate the impact of certain conditions, such as cardiac and respiratory impairments often associated with neuromuscular disorders, that may diminish a patient's ability to withstand the flu, childbirth or surgery.

Bush says he thinks few primary care doctors would connect excess drooling with weakened facial muscles or congestion with failing breathing muscles in a patient with muscle disease. It may be up to you to point out the facts (gracefully), or at least to insist that he talk to your neurologist.

Make sure you're communicating. If you have a disorder that affects speech, it's essential that you have a way of communicating with your doctor or other professional. The solution can be a speaking device or someone who's used to your speech and can act as "interpreter." If you use an interpreter, that person should only repeat what you say, in your words, not edit your remarks or carry on an independent conversation with the doctor.

Of course, anyone could end up alone and unconscious in an emergency room after an injury. For this reason, you may want to consider wearing a Medic Alert bracelet. These metal bracelets have critical medical information, such as your neuromuscular disorder's name, engraved on them, and also have a 24-hour phone number that any emergency physician can call for detailed medical information about you. You can join Medic Alert by calling (800) 825-3785 or via its Web site, http://www.medicalert.org/.

Make sure professionals communicate. Lack of communication between doctors delivering primary care and specialists is an ongoing problem in the health care system. It may be up to the patient to make the connection.

Expect respect. Bush suggests interviewing doctors before entering into a long-term relationship to see whether you can work together. Sometimes, he notes, you really have to be blunt. He once had to say to a surgeon who was ignoring practical concerns, "Doctor, please understand me. If these issues are not resolved, there will be no surgery."

Do your homework. On the other hand, some of the responsibility rests with patients themselves in a world of ever-increasing medical specialization and segmentation, Bush cautions.

"You can't have a trusting, godlike view of doctors. You can find information from books and other publications, many of which are at the library, and from Web sites. If you don't get answers, seek alternatives."