HSC leaders working to change perceptions about disabilities

The pharmacist ran six miles that day, about as much as he usually did. Later that night, he went to a party. It was New Year's Eve 1999. The millennium.

As televised revelers donned eyeglasses fashioned from the numbers 2-0-0-0 and partied like, well, 1999, W. Thomas Smith, Pharm.D., J.D., started to feel like he was coming down with the flu. He didn't wait for the ball to drop or for the world's computers to crash because of Y2K. He was home by 9 that night. The next day, feeling worse, he went to the hospital.

Diagnosed with meningococcal meningitis, the deadly, bacterial form of the disease, Smith was immediately quarantined and lost consciousness. For several days, his condition wavered, improving and worsening. He developed a secondary infection and, because of this, lost portions of all four of his limbs.

"All of this happened while I was unconscious," says Smith, now a UF assistant professor in the College of Pharmacy. "I woke up sometime about mid-March of 2000. After 10 weeks in a coma, I was in a different world."

Smith was still the same person: a graduate of the St. Louis College of Pharmacy, a pharmacist at a long-term care facility. But he had entered a world where he would have to find new ways to move from room to room, open doors and even eat. It was a place where he would have to fight with insurance companies about his benefits, where buildings don't always accommodate wheelchairs and where people often see the disability before they see him.

For millions of Americans, this is life. Currently, 62 million have some form of disability that limits their physical or mental function, according to the National Center for Health Statistics. Laws such as the Americans with Disabilities Act have improved life for people with disabilities, yet physical and social barriers still limit their access to health care and education. Basically, the fight for equality rages on.

"We want to make sure we are a society that values the full participation of everyone," said Elena Andresen, Ph.D., a UF professor and chair of epidemiology and biostatistics in the College of Public Health and Health Professions and director of the Florida Office on Disability and Health. "It is not an issue of having sympathy but understanding differences. You are getting to know a person not a disability."

A lesson in empathy

Huddled around a table, a group of second-year medical students watches a woman's frustration at a radiology clinic play out on the screen in front of them. She went in for a mammogram, her first in 25 years. But the visit didn't go as planned.

The clinic staff wouldn't let her control her own wheelchair during the exam, even though the motorized chair rises and tilts. Aggravated, she vents about the situation.

The story is part of an audio slideshow called a Photomap, a new research methodology that UF College of Public Health and Health Professions researchers developed, in part, to educate health-care providers (and future ones) about the barriers patients with disabilities face.

Researchers Ellen Lopez, Ph.D., M.P.H., and Eva Egensteiner, M.A., C.P.H., worked with four women living with disabilities to create photomaps detailing their experiences obtaining a mammogram or visiting the doctor. The photos, which the women and researchers took, were paired with each woman's recorded thoughts about her experience.

The women face barriers that seem painfully obvious when looking at their encounters from their perspective but might go unnoticed by someone without a physical limitation — such as doors that don't open automatically. One woman described her technique for opening doors while seated in her wheelchair; she wedges her foot in to keep it from closing. She's broken her foot this way but says it's the only way she can get in without help.

After Melanie Hagen, M.D., a UF physician who co-directs the College of Medicine course, Essentials of Patient Care, viewed the Photomaps, she and course co-director Rebecca Pauly, M.D., teamed with Lopez and Egensteiner to develop a training module for medical students about patients with disabilities. The researchers received a College of Medicine grant for the project. First- and second-year medical students viewed the Photomaps and attended a lecture and panel discussion in March. First-years also began "seeing" patients with disabilities during role-playing sessions at the college's Harrell Professional Development and Assessment Center last month.

"Being able to empathize with a patient is, to me, the most important thing in medicine," Hagen says. "That is something I try to improve in my own practice." For Lopez, the goal of the session was less an overview of disabilities and more a lesson in empathy.

"The goal is not only that they be aware of disability issues, but also that they use their knowledge and power to be advocates. I want these students to realize that they can be the catalysts for positive change," says Lopez, now a research associate at the Center for Alaska Native Health Research. "If they can understand, just a little bit, what it is like to have a disability, it will change their practice."

Unseen barriers

When Lopez was at UF, she sent her students on an assignment: traverse downtown Gainesville in wheelchairs. Easier said then done.

Wheels caught on cobblestone streets, buildings were too narrow to roll through and few handicap-accessible bathrooms were found, Lopez says.

"The library was pretty accessible, but not all the buildings and restaurants," she says. "Everyone should have to spend an hour in a wheelchair."

UF nursing students made similar observations while collecting data on accessibility in Gainesville, Jacksonville and Northwest Florida, said Barbara Lutz, Ph.D., a UF College of Nursing assistant professor who studies disability issues.

The ADA, a civil rights act for people with disabilities that was passed in 1990, requires accessibility in public buildings, parking lots and other venues. Although considerable progress has been made, these regulations often are not enforced.

But there are other barriers that could be even more limiting, specifically the attitudes of other people.

"I call them ‘attitudinal' barriers," says Lisa Hannold, Ph.D., a researcher at the North Florida/South Georgia Veterans Health System, who was born with a type of muscular dystrophy called spinal muscular atrophy. "Attitudinal barriers can be much more difficult to break down than physical barriers. You can try to educate. Some people are willing to change. Some are not."

Breaking this barrier is particularly crucial in health care, where the relationship between provider and patient can sometimes mean the difference between life and death. Often, because of misperceptions about life with a disability, health-care providers overlook needs, such as preventive care. For example, Hannold says she had to press her doctor for her first gynecological exam.

"In health care, when someone with an obvious disability comes in for care, our attention goes right to the disability," Lutz says. "We forget this is a person who has a life, we forget they have the same prevention needs everyone has."

Hannold, one of the women who made a Photomap, has always advocated for herself and carefully chooses physicians who treat her like a partner. Smith says his background in health helped him when he was fighting with insurance companies after his illness. But not everyone speaks up.

The need for change

One of the photos in Hannold's Photomap shows her cruising up a ramp into her own van. Her van cost nearly $40,000. As a working researcher, she can afford it. But this is a luxury for many with disabilities.

In short: having a disability costs money, and because of insurance issues, some people encounter limited employment possibilities, despite their capabilities. Often, people must work for larger companies to get insurance. Medicaid helps people get care, but it has income restrictions that prevent people from seeking certain jobs for fear of losing coverage.

For people with limited incomes or those who cannot work, transportation is a key issue. Most counties have paratransit services, but even these are limited. Because of demand, they often only take people to work or health appointments and don't cross county lines, says Erin DeFries Bouldin, M.P.H., a project manager for the Florida Office on Disability and Health, which is housed at UF. To get to the airport in Orlando, for example, a person would have to contact each county on the way and be approved for transportation eligibility there.

"Even then, vans cannot cross county lines," Bouldin says. "You have to go to the county line and hope the other van is waiting or you have to wait by the side of the road."

The office is teaming with a governor's commission to create a statewide eligibility policy and is gathering data about transportation issues to help state agencies make policy decisions, Andresen says.

"It's sort of a nightmare," Andresen says. "Some rural counties don't have accessible mammography (or other types of) clinics. If they want to go somewhere larger it's a real challenge unless they have someone to take them or their own vehicle."There also is an issue of educational accessibility for students with disabilities entering health professions. Because of the physical nature of many health fields, students with disabilities either do not choose them or are sometimes turned away, Smith says. While it's clear a person with a physical disability may not be able to be a surgeon, there are other fields he or she could enter.

"There seems to be discrimination, too, in holding some type of job in the health-care arena," Smith says. "A lot of folks' perceptions of people with disabilities are that they aren't educated or capable and that couldn't be farther from the truth. They are just differently capable."

In some ways, it all comes back to changing perceptions and those "attitudinal barriers."

Smith says he feels, in some ways, like he changes attitudes every time he teaches a class. Not by anything he says, but just by who he is: an intelligent, capable academic who, yes, happens to have a physical disability.

"Just by getting in front of these individuals and doing the job I do, it starts to break down those barriers, those walls and perhaps shift their perceptions of people with disabilities," Smith says. "That's why it is so important for people with disabilities to be out there and live their lives the best they can, and people will learn from that."