Disability for a day

Medical students “wear” a disability for a day.

Suzanne Bacal’s spinal muscular atrophy forced her to depend on a wheelchair for 25 of her 39 years, giving her a different perspective on the world. Even – or especially – when it comes to dealing with doctors.

“Sometimes I have trouble breathing,” said Bacal. “When I go to a hospital emergency room in respiratory distress, often the doctors don’t ask me questions. They just try to fix what they think is wrong.

“Once I went to the hospital with my mother, and the doctors were busy trying to straighten out my arms and legs. My mother was screaming, ‘Look at her! She’s turning blue! She can’t breathe!’ They should have ignored my legs and worked on my lungs. Now I wear a Medic Alert bracelet to warn doctors what’s wrong, but I’m not sure they look at that first.”

Bacal, who lives in West Philadelphia, is community outreach and education coordinator of Liberty Resources, one of 300 independent-living centers in the country. She’s also chair of the Mayor’s Commission on People With Disabilities. Personally and professionally, she wishes doctors grasped the needs of their patients with disabilities.

Wouldn’t it be lovely if doctors were as compassionate as William Hurt, playing the title role in The Doctor, was after he became a patient? If physicians had superb bedside manner?

The fulfillment of Bacal’s wish is taking shape thanks to Alicia Conill, a physician, professor and patient at the University of Pennsylvania. Conill, who has multiple sclerosis, has turned her electric scooter into her pulpit, her disability into a teaching tool. Last month she ran an overnight workshop for 14 Penn medical students to show them the realities of disabilities.

In the workshop, half the students assumed the roles of people with disabilities – multiple sclerosis, effects of a stroke, blindness caused by diabetes – and half played their caretakers. The students received packets describing their ailments and their relationships with their caretakers; a schedule for swallowing “pills” – in reality, red, white, green and orange Tic-Tacs. They put on equipment to simulate their imaginary ailments, such as dark glasses coated with Vaseline to imitate blindness.

Seminars like this are unusual, though not rare, according to Bacal. They typically last an hour – not 28 hours, as was the case at Penn.

At the Penn seminar, second-year student Rachel Bishop, for instance, masqueraded as a woman with a ruptured clot in her brain who had had emergency neurosurgery two months earlier. To remind her of her speech impairment, Bishop put a plastic bottle cap from a 12-ounce soda bottle in her mouth. It rendered her incomprehensible, but she never spoke a word without it.

Sue Yom, also second year, rode in a wheelchair because of “multiple sclerosis.” Her “husband,” classmate Joseph Pace, pretended to give her daily injections of an experimental drug.

The students slept “in role,” which meant those wearing braces and supports were so uncomfortable, they barely slept. The caregivers, though, were exhausted from pushing, soothing, dressing and “toileting” their charges. Except for those whose charges kept them up talking, they were more likely to rest.

Conill, head of the nonprofit Conill Institute for Chronic Illness, which funded this seminar, eventually wants to impart firsthand knowledge to all health-care professionals, not just the medical students she teaches. “But you can’t teach the issues of living with a disability in a lecture format, because students won’t get it.

“I used to consider myself pretty empathetic and a pretty good doctor,” said Conill. “It wasn’t until I got MS that a myriad of things that I didn’t even imagine would happen, happened. Like, that you can’t reach for things in a store in a wheelchair. Things that you want are usually on the top shelf. When you try to get one, the whole display falls on your head.

“You can’t open a door, even if it’s marked `handicapped.’ That means it’s wider. But nobody’s there to open it for you. Some people offer to help, which is wonderful, but others walk right by. They might not be a bad person; they might not want to make you feel inferior by offering to help.

“At the end of The Doctor, William Hurt makes his residents spend a day in the hospital acting like patients. He gives them a diagnosis and puts them in hospital gowns, but he makes no attempt to reproduce the obstacles or barriers of real life,” she said.

“There isn’t a way to fully reproduce a chronic disability. We hope our students will never be in the situation where they are disabled. or where they are caring for someone who is disabled, but chances are that, the longer we live, that’s going to happen.”

So what did the students learn? Second-year student Malaka Jackson typically walks a treadmill and lifts weights five mornings a week. After a day in a wheelchair, she said: “It’s frustrating. You’re used to doing what you want when you want. You’re not used to relying on someone else. It’s not just one favor you’re asking, it’s a lot of favors.

“You lose all control. Modesty is no longer a question. It takes a lot to deal with having to expose yourself. You can’t take a bath without this person.”

After a day of wheeling and tending his “wife,” Joseph Pace realized that “caregivers really need to take care of themselves, for their own well-being as well as for that of the patients. Yes, an illness, a disability, whatever, has befallen you, and it’s unfortunate, and it’s unfair. But you have to put it in its place so you can have a life.

“There were times when I was frustrated. Even in the course of 28 hours, I found I needed time to take care of myself. Imagine living like this over years and years and years.”

“It’s different from caring for a baby,” said Jackson, “because a baby makes advances. But a person in this illness might be going backwards, losing function and becoming more dependent.”

According to Conill, caregivers of AIDS patients and Alzheimer’s patients are much more likely to be depressed than are people who are not responsible for an ill person. “We don’t yet know what the dynamic of that is,” she said.

“Possibly, though, when physicians deal with patients, we tend to deal with the person who’s sick and we tend to forget about the person who’s not sick – but who needs attention.”

That’s why she hopes this first-time workshop will happen again – at Penn, around the city and across the country.

Bacal, who said these programs are “absolutely critical,” remembers another emergency-room nightmare that could serve as a lesson. “The doctors put me on a breathing machine. They kept saying, `Breathe with the machine,’ and I couldn’t say, `I know how to breathe with the machine, and it’s not working.’”

A few minutes later, someone else came in and found the machine unplugged.

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