I am prompted to write this because I have experienced a vague sense of discomfort over the past 15 years each time I hear about the growing focus in the field of physiatry on fixing the ailing joints of avid tennis players, bikers, skiers, runners, climbers, etc., to ensure that they can continue their active lives.
I have nothing against tennis or running, skiing or biking, and am really happy that there are interventions available to relieve pain and repair related injuries. But this represents a major shift in a field that began with very different intentions. However, it wasn’t until a few weeks ago that I realized why I seemed to bristle at this new direction. It’s because I experience this shift as a personal rejection of who I am and others with disabilities like mine.
The role of physiatry
I contracted polio in 1946 at the age of seven. I have used a wheelchair for mobility ever since. I spent the next year and a half in a hospital that was called the New York State Reconstruction Home (now known as Helen Hayes Hospital) located in beautiful, rural upstate New York. I remember receiving grueling physical therapy treatment – painful stretching of my limbs, neck and back, the latter by placing me on my stomach, lying over a barrel; muscle reeducation by therapists who used every technique they knew to focus my energy on moving every paralyzed muscle to restore its function; and lying in a large stainless steel tub filled with hot water to relax tight spastic muscles.
Most of the children and adults who I shared this experience with at the hospital had polio and were undergoing the same treatment regimen. It was also where I learned how to swim. Those hours in what I recall as an Olympic size pool provided me with the most freedom I had known since having polio.
At the same time that my life consisted of being the recipient of these therapies, a then new field of medicine was growing called Physical Medicine and Rehabilitation (PM&R), now called physiatry. According to the Academy of Physical Medicine and Rehabilitation, “PM&R is often called the quality of life profession because its aim is to enhance patient performance. These specialists treat any disability resulting from disease or injury involving any organ system. The focus is not on one part of the body, but instead on the development of a comprehensive program for putting the pieces of a person’s life together – medically, socially, emotionally, and vocationally – after injury or disease … Some rehabilitation physicians have broad-based practices that encompass many different types of patients. Others pursue special interests and focus on specific groups or problems. For example, sports medicine has grown as a special interest…”
Practitioners in this new field worked intensely with disabled veterans following World War II, helping them to regain as much function as they could so that they could live as independently and as fully as possible. In the 1940’s and 1950’s, those physicians and the therapists who worked with them played a significant role in the treatment of those of us who had polio as well.
Drawn to this work, in 1957, after graduating from college, I got a job at the Institute of Physical Medicine and Rehabilitation or the “Rusk Institute.” It was named for its director, Dr. Howard Rusk, who by then was well on his way to becoming a nationally as well as an internationally renowned leader in Rehabilitation Medicine.
“Restoring function and independence to individuals with disabilities”
During all my years at the Institute, which I didn’t leave until 1983, physiatry was linked to its mission of restoring function and independence to individuals with disabilities. With the advent of the federally-funded model systems of care for spinal cord injury and traumatic brain injury, physiatrists were treating more individuals with these types of disabilities. Physiatry became the specialty that advocated for the development of new modalities, equipment and devices for people with physical disabilities.
More importantly, physiatrists saw beyond the disability; they believed that there was value to the life to be lived. It was for many years the medical specialty that did not require the outcome of a disabled person’s treatment to be a cure, or restoration to complete or near complete physical functioning but rather to the person’s maximum level of function.
A few months ago, a friend of mine who happens to be one of those traditional physiatrists told me that every person with a disability should have a physiatrist in their cadre of doctors. I think he’s right. How good it would be to know that if I had to have abdominal surgery, my surgeon would know to call in a physiatrist for advice on a host of crucial questions: What help might I need recovering that a person without my disability might not need? What impact could the surgery have on me that it would not have on someone who did not have polio? How might the surgery impact even my currently marginal functional abilities, and would the impact be permanent or temporary?
Physiatrists remain the only physicians perfectly placed to raise these issues, to seek this life-saving and life-enhancing information. But if more and more residents in PM&R continue to be attracted to fixing the joints of those who run marathons or climb mountains, my worry is that there will not be enough physiatrists committed to working with all the people with disabilities.
I don’t think the physiatrist’s purview has to be one or the other. I also think that maintaining this commitment, promoting the importance of physiatry to the health of people with physical disabilities to the rest of the medical community and to people with disabilities themselves, could only result in an even greater role and more visibility for the field. But that will depend on physiatrists themselves providing the advocacy and leadership that will make this happen. The question is: Is anyone up for the challenge?