Scholar-physician juggles culture, care, compassion

What do frogs and bears have to do with human disability?

A recent lecture in Walt Schalick’s History of Disability course covers the full spectrum of human-animal relationships. Service animals aren’t the only ones making an impact: Frogs with limb abnormalities can mark environmental change, while the physiology of hibernating bears could help researchers lessen bone loss in bedridden (human) patients.

Perhaps the most striking, however, are the examples of herd behavior. Species who let weak or disabled individuals lag behind put the whole group at risk. Those species who integrate disabled individuals find adaptations that end up strengthening the group’s resiliency. In turn, they increase the sense of mutual care and cooperation within the community.

As one of the few pediatric rehabilitation physicians in the country, Schalick already contributes to a field desperately in need of clinicians. But as a historian of medicine committed to interdisciplinary collaboration, he sets the tone for breakthroughs that could reach every corner of the human experience — disabled and able-bodied alike.

A typical week for Schalick might include examining a medieval manuscript to learn about the history of cerebral palsy for a pending book, then working with an English professor or anthropologist on the disability studies cluster hire initiative. In addition to teaching classes for undergraduates all the way through medical residents, he also maintains an active clinical schedule, working with young patients and their families at the Central Wisconsin Center (CWC).

“It’s a little hard to capture everything Walt brings to us,” says Norris Glick, director of UW Rehab Services at CWC. “He’s ventured deeply into a field of medicine (and history) few physicians dare enter. At the bedside, his enthusiasm and multifaceted expertise are enormously helpful in the development of health care plans for people whose problems, for many reasons, often do not fit easily into care schemes of modern medicine.”

Once a professional magician who performed at children’s parties, Schalick uses the metaphor of juggling to describe the many things he keeps “up in the air.” His amiable manner and academic training smooth the way while discussing the sobering realities of how people with disabilities are treated — both in medical settings and in society.

Many disability advocates have fought to escape the reductive “medical model” of disability. In this model, a disease causes an impairment, which in turn leads to a disability: a functional incapacity. This disability then leads to social ramifications: a handicap.

“It’s a linear process focused on the individual,” says Schalick. “The disease causes a handicap, and the disease is located within the person. Not that it’s the person’s fault, or it’s their sole problem, but it’s intrinsically linked to identity.”

In a medical setting, shorthand can often be critical in quickly communicating immediate patient needs. Unfortunately, it can also turn a person — “Ann Jones, a woman with brown hair who loves football and the Beatles” — into a blunt, faceless diagnosis like “the traumatic brain injury patient in room 315.”

That can also lead to the kind of negative assumptions that remain deeply ingrained in modern society. A person with communication impairment may be otherwise healthy, but without words it may be hard to convince peers that he or she can contribute to the community. Visible difficulties with motor control or bodily functions might mask a person’s true capabilities: an Ivy League Ph.D., a brilliant literary talent.

In contrast, the social model posits that society plays a much greater role in creating the idea of a disability. In a technologically advanced society, children with a developmental disability such as Down syndrome may find it hard to process multiple tasks or engage in critical thinking. Because of this, they may fall behind their “normal” peers.

But in an undeveloped island community, or a village in the Middle Ages, a child with Down syndrome may not have faced these difficulties. If the child was happy, perhaps even contributing value to the community — collecting wood, guarding food — he or she might be recognized as “typical.”

“That child can grow up in mutual respect and honor in a way that is difficult for a developmentally disabled kid in our society,” says Schalick. “Same child, same condition, different social context: disability exists in one setting and doesn’t in another.”

The field of disability studies is still young, with few programs nationwide and even fewer offering major status. It grew out of the civil rights movement, forming largely in the United States and the United Kingdom. Building out of the social sciences, it grew to embrace the arts and humanities as it also encompassed patient advocacy and policy issues.

The two (soon to be three) faculty members leading the formation of UW–Madison’s disability studies program might imply that disability studies is a small field. But Schalick notes that more than 100 people on campus do work that involves disabilities.

What Schalick suggests as the “Wisconsin model” for disability studies integrates the physical and mechanical care of the medical model with the societal considerations implicit in the social model. True to his background as both pediatrician and entertainer, he frequently uses the phrase “play together” as he describes the collaborative potential on campus.

“UW–Madison is a pretty friendly place,” he says. “When you ask a question here and the person doesn’t respond in a helpful, friendly manner, that’s an anomaly. It’s uncommon to have that breadth of excellence and yet encourage people to come play together in warm, fuzzy ways.”

Perhaps ironically, the same principles that help scholars from vastly different disciplines to work together are the same principles that illustrate why an able-bodied majority should care about a disabled minority.

Schalick describes the philosophy of contractarianism: If individuals enter into a contract for living or working together without knowing anything about the other individuals, the contract should be fair to everyone. Without this guideline, an individual risks being included in an ostracized group.

“Most of us already have some kind of disability, however minor,” he says, gesturing to his rimless glasses. “It can be temporary, just as your status as able-bodied can be temporary. But it’s the only minority status you can acquire. We should all demand that our world is just and fair to people with disabilities for that reason alone: that all of us are at risk for becoming a member of that disabled minority.”

Even if we don’t like to think of those possibilities, however, the modifications made to accommodate people with disabilities end up benefiting the able-bodied majority. Automatic doors and lever handles are just as useful to people carrying armloads of groceries as they are to people with arthritis or using a wheelchair. Electrical outlets placed at a seated height reduce fatigue from bending over while they reduce tripping and hold cords out of the reach of toddlers.

All of this shows how the idea of disability — or, more accurately, differing abilities — can actually enhance our lives. The creative workarounds that help a small group in one way can provide many other advantages to the larger society.

In short, Schalick says, the aim isn’t merely tolerance of differences, but the realization that difference is good.