Double Standard
The Link Between Mobility and Quality Health Care
If you don’t have a mobility disability, you don’t even think about it: You
visit your doctor, you hop up on the examining table, a nurse takes your vitals,
the doctor examines you, you hop off the examining table and you’re out of there.
If you do have a mobility disability, though, hopping onto and off of tall
examination tables isn’t something you do very well. A result is that you may
not get the kind of thorough examination routinely offered to people who can
climb onto the table where they can lie flat at a convenient height for doctors
who can comfortably perform a thorough thoracic examination and abdominal palpation
– doctors’ words for poking and prodding and generally trying to feel your insides.
No lying flat, no reliable exam. No reliable exam, and serious problems, from
colon cancer to liver disease, can be overlooked until it’s too late.
Mary Lou Breslin knows a lot about this double standard, and she spends a
lot of time talking about it to lawmakers and physicians and journalists. Breslin
is an internationally known disability-rights advocate and the founder of the
Disability Rights Education and Defense Fund. Recently featured on National
Public Radio’s Morning Edition, she argues that people with disabilities often
get shortchanged in health care because everything from cancer-treatment centers
to neighborhood doctors’ offices assume their patients are able to walk in,
climb, bend, stand, and jump up on that high, gleaming exam table with the crinkly
paper.
The reason Breslin knows the subject so well is that she uses a power chair,
is a breast cancer survivor, and has seen the double standard up close. Turned
away from a chemotherapy infusion center when she was battling cancer because
she was in a power chair — “We’re an ambulatory infusion center,” the nurse
told her — Breslin learned the hard way about the double standard. If you’re
in a chair, Breslin said, it isn’t long before you recognize that state-of-the-art
diagnostic equipment, from mammography devices and weight scales to X-ray machines
and examination tables, wasn’t designed with you in mind.
“The problems that people face in gaining access to health-care services go
beyond architectural accessibility,” Breslin said. “We’re talking about programmatic
accessibility, which has to do with what happens once you actually get into
the office or clinic or facility of a health-care provider.”
If you have a mobility disability, it’s likely to be a challenge to get thorough
health care. Breslin says you’ll have to do some work, and she has some recommendations.
If you have to be hospitalized, don’t just agree to the facility your doctor
designates without first checking to be sure it’s accessible throughout, not
just the front door. Is there an ADA compliance officer or a patient advocate?
If so, they should be able to tell you if their hospital has a clue about accessibility.
When you look for a doctor, start by making phone calls. Visits are time consuming,
exhausting and expensive, so vet local providers first by phone. Speak with
someone who can field your accessibility questions. Do they have a height-adjustable
exam table? Does the physician routinely get patients with disabilities up on
the table for exams? Does the office have access to a wheelchair-accessible
scale? If the people you speak with seem aggravated by your questions or surprised
that you’d ask such things, wish them a good day and try elsewhere.
Get in touch with other mobility-disabled people in your community. Word about
good doctors for people with disabilities travels fast, so your neighbors can
be good information sources. Breslin also says your local independent-living
center can make sound recommendations.
An attorney, Breslin thinks it’s important that you understand the law and
your rights. Title III of the Americans with Disabilities Act covers things
like hospitals, diagnostic facilities and physicians offices. While large hospitals
tend to pay attention to the ADA, the same can’t be said for the country’s hundreds
of thousands of individual physicians’ offices. “The providers for the most
part are not thinking about it,” she said. “It’s not really on the radar.”
According to Breslin, doctors have been notoriously slow about ADA compliance,
many claiming the law is vague. That excuse is a good reason to tell your senators
and representatives to support Sen. Tom Harkin’s (D-Iowa) legislation, S. 1050,
that sets accessibility standards for medical equipment.
Breslin says that the way the American health-care system accommodates or
fails people like her is a measure of whether it can recognize, respect and
care for people with disabilities. Despite progress, she says, there’s still
a long way to go.
This article originally appeared in the November 2007 issue of Mobility Management.