Rachel steered her wheelchair into a Chicago area medical center for a series of upper gastrointestinal tests.
But when Rachel, who has cerebral palsy, entered the radiology lab, the technician told her she had to stand up to take the test.
"But I can't stand," Rachel explained. The medical center, however, had no alternate strategy, and sent her home without having the test.
Across town, Susan, who also uses a wheel chair, arrived at the office of her new gynecologist for a routine exam and Pap smear. But there was nothing routine about it. The doctor's office did not have a wheelchair accessible examination table or transfer equipment. Instead, staff members awkwardly grabbed and hoisted Susan, her flimsy paper gown fluttering, onto the table.
"It was one of the most humiliating, terrifying experiences of my life," Susan recalled.
People with physical disabilities endure substandard health care and a pervasive sense that they are a burden to doctors and medical centers, according to a Northwestern University physician. These patients often ram into roadblocks when they try to obtain basic care and life-saving diagnostic tests.
"Disabilities have been invisible in health care settings," said Kristi Kirschner, M.D., associate professor of physical medicine and rehabilitation, and of medical humanities and bioethics at Northwestern's Feinberg School of Medicine. Kirschner was lead author of a recent commentary in JAMA (Journal of the American Medical Association) that identified structural problems encountered by disabled patients and offered a blueprint for overdue change.
Kirschner believes the Americans with Disabilities Act of 1990 had less impact on health care than other areas of society such as public transportation.
"Health care has been a laggard in becoming accessible to people with disabilities. It's still in its infancy," said Kirschner, who also is director of The Rehabilitation Institute of Chicago Donnelley Family Disability Ethics Center.
According to the 2000 U.S. Census, an estimated 49.7 million persons ages 5 and older report a disability, many of whom struggle with structural impairments to health care. This number likely will soar as the population ages.
"Physical disability goes hand- in- hand with aging," Kirschner noted. About 30 percent of people 65 and older have a physical disability, compared to 7 percent of people 16 to 64, according to the American Association of People with Disabilities.
People with physical disabilities have been injured and even died as a result of inadequate health care facilities or neglect. A man with quadriplegia died after he fell from an examination table. Delayed diagnoses are another problem. Surveys show significantly fewer women with major mobility impairments have mammograms or Pap smears than non-disabled women.
Health care workers also suffer injuries when they try to transfer disabled patients without proper equipment. A 2006 survey reported an estimated 40 percent of nurses and radiology technicians experienced lift-related injuries within the prior two years.
The lack of attention to disabled patients' needs extracts a psychic toll. "It heightens people's sense of being stigmatized," Kirschner said. "What makes the experience so awful is the sense that you're such a burden to people -- that you're different and abnormal and creating all this inconvenience. It's not something a person should internalize as a defect or problem with themselves, but a lot of people do."
"We're health care providers. We should be therapeutic. These are not therapeutic ways to treat people," she added.
To remedy the problem, she proposes the health care industry, including accreditation organizations and the American Hospital Association, publish a "report card" that grades health care providers' patient safety and quality of care for the disabled.
"That would give us some teeth," said Kirschner. "Hospitals and health care professional education programs also need to do a better job training physicians, nurses and hospital staff about disability accommodations."
Kirschner also said hospitals and doctors offices should purchase universal design equipment. A universal design examination table, which is wheelchair accessible and accommodates obese patients, costs more, but will save money by preventing injuries.
"Bodies come in lots of shapes and sizes," she said.
She also suggests Medicare, Medicaid and private insurers tie their contracts to whether health care providers are accessible to people with a wide range of disabilities.
"We've got to attack this from all levels," said Kirschner, who previously wrote a white paper with her colleague, Judy Panko Reis, director of The RIC Women with Disabilities Center.