Author: Sheri Denkensohn-Trott
I recently had the opportunity to speak to second year medical students at the University of Miami. This is the second year that I have been invited back to speak to this group, and it is one of my favorite advocacy activities. It gives me faith that the next generation of doctors will have a better understanding of the needs of individuals with disabilities.
Approximately a year ago the New York Times did an in-depth story interviewing a variety of medical doctors who reported anonymously on their views of treating individuals with disabilities. It was unanimous among the doctors that they did not want to treat individuals with disabilities. Reasons varied from taking too much time, lack of knowledge of specific disabilities, attitudinal barriers, and the like. While it was very disturbing to read, I was not surprised.
There is no one size that fits all when it comes to disability. Therefore, even if you work in a specialty and are not a primary care physician, disability adds another layer of complexity. One of the biggest problems that I talk about in my presentation and something that I’m working on is that there is no curriculum requirement on a disability course or even continuing education mandate to learn about disability. Even though one in four individuals have a disability (one in three in 10 years). Quite frankly, it is frightening to think that physicians don’t have the specialized knowledge they will need in the future.
Most of my doctors have been willing to listen to me and learn about my disability. But that is the exception not the norm. And, in a high paced environment where physicians are forced to treat quantity of patients over quality, often there is not the time to sit and go in depth into the particulars of the specific disability and what symptoms the individual is experiencing. Often things present in someone with a disability that are different for someone without. For instance, for a quadriplegic like me, low blood pressure is normal. I always tell that to the technician taking my blood pressure because for a “normal” patient, a blood pressure of 80/40 would not be considered a good thing. For me, and others with quadriplegia, however, that is normal. Additionally, when someone with a disability is hospitalized, there are many specialized needs that must be considered. As a quadriplegic, my mattress must be alternating pressure, or I could develop a severe wound. My heart needs to be monitored even if I’m not getting a procedure that would qualify for monitoring because my body shows pain through a condition called autonomic dysreflexia where the nervous system makes the heart rate elevate when it is under some type of distress. I could have a heart attack and die whereas someone else can tell the doctor that they are in severe pain. These are just a few of a myriad of examples.
Also, there are many legal requirements and other policies that physicians need to keep up with in the disability arena. Yes, reading journal articles about the latest innovations in a specialty is important but doctors also need to know general requirements applicable to the disability community. Recent regulations require such things as accessible exam tables that adjust to 17 inches from floor level for ease of transferring, accessible mammography machines, and accessible scales. These need to be purchased in every facility. Doctors have the privilege and the ability to speak up. Advocating to make sure the facility is up to code and that risk management is looking at these issues is critical.
The students always leave these discussions with many thanks and say that they will take this knowledge with them as they enter their practice. Given the questions that they ask and their interest in what I talk about, I am incredibly hopeful.