Ian D. Jones
I’m nearly 40, and three of my pre-k to third grade classmates have died in the last year. It’s sobering, in the way only death or a brick to the face can be. But contrary to the popular conception of disability, death doesn’t constantly loom over my shoulder. In the past twenty years, I’ve only been an inpatient twice, both for elective surgeries. But I have to be vigilant, just like anyone else. Also, the disabled tend to receive substandard healthcare.
Dr. Tara Lagu, a physician researcher at the Center for Quality of Care Research at Baystate Medical Center in Springfield, Massachusetts wanted to know why there’s a problem with the disabled and healthcare. As an experiment, she “created a fictional patient, based on many of her real patients. The “patient” had several significant health issues. Lagu and her team phoned 250 doctors offices to try to make an appointment. One out of five offices refused to even go that far.
In a 2014 report on NPR’s website, Dr. Leana Wen, director of patient-centered care research in the Department of Emergency Medicine at George Washington University, wrote that it’s due, in part, to perceptions about abilities. As comprehensive as the Americans with Disabilities Act is, it lacks a lot by way of some protections, like assuring informed consent, which isn’t always given to the disabled.
I used to go to a yearly outpatient clinic at Kaiser for people with my disability, which attempted to buck the trend. I went regularly. A full 8 hour day of doctors running tests, telling me what I could be doing better in my life, and about 45 minutes for lunch. I was a bystander in my own healthcare. It overwhelmed me. It would send me into a depression weeks before, but I went. Often the doctors at the clinic lacked a bedside manner. They presumed I’d be a “textbook case”. And they presumed they were the only doctors I ever saw. I continued to see my general doctor frequently – and made use of the LPC health center.
I missed the clinic two years in a row. Life happens. After I missed for the second time, I got a call from one of the clinic’s coordinators. She sternly told me that I “wasn’t prioritizing” my health.
The irony: I was in the parking lot of another Kaiser hospital, on my way to see my regular doctor. That illustrates Dr. Wen’s findings: less than twenty percent of medical schools teach their students how to talk to disabled patients. And the disabled make up nineteen percent of the population in the United States.
Would you believe that when I was born that the doctors asked my parents if they thought I should be fed? Or that I’d end up institutionalized, best case scenario? All but one of the doctors assumed I was going to die the night I was born. According to a 1981 article in People Magazine, in 1974, two years before I was born, the mortality rate was 30 percent. According to spinabifidamoms.com, babies born from 1989 to 1994 survived 91 percent of the time.
Time for an attitude adjustment, America.