Despite taking an oath “to do no harm”, medical professionals are the worst at perpetuating disablism. Many of them do not see beyond the disability, disease or disorder to see the individual filled capabilities, potential and dreams. They use language that focuses on the deficit rather than on the positive. And, once an individual is diagnosed with a disability, then every future ailment is presumed related to that disability and is often discounted or completely disregarded.
I would like to share my most recent experience with medical professionals. For a bit of background: many, many moons ago, I had a triple arthrodesis done on both feet – surgery that, essentially, rearranged bones in my feet to stabilize my ankles, which were beginning to go over on their sides when I stood up. Despite the months of pain, the surgery was a success. I graduated from the heavy, metal long-legged braces to ones below the knee and then to none. However, the pediatric orthopedic surgeon warned that the bones may slip at some point in the future.
Fast forward to six years ago: bones in my left foot felt like they were grinding on each other, and the two protruding bones seemed to be protruding slightly more. When I showed my family doctor, his comment, in a patronizing tone, was, “Our bones tend to protrude as we get older,” at which point I was very tempted to have an intentional involuntary movement with my foot making forceful contact with one of his sensitive body parts. I was sent for x-rays, which, with athetoid cerebral palsy and constant movement, is another story.
Over the years I have shown my permanently swollen ankle to various doctors with little concern in return. One doctor did send me for more x-ray – another exercise in frustration. The radiologist report came back saying something like, “Paraplegic patient has no broken bones.” Up until this point, I had been a quadriplegic, meaning that all four limbs had been affected. Wow, a paraplegic! I had been half cured and hadn’t even realized it.
August, 2005, I was in for my annual thrill and asked the gynecologist for a referral to an orthropod. Her nurse chose a name from the yellow pages, further diminishing my confidence in the healthcare system.
After another fourteen months of pain, I finally had an appointment with an orthopedic surgeon, not that those are comforting words to me. Finally someone took interest in my foot. With more x-rays, it was determined that bones have not moved. Without comparing these x-rays with the post-surgery x-rays from years ago, I’m not sure how this determination can be made, but I’m not the highly educated, highly paid expert. The news that I don’t need surgery was a relief; I was dreading having to go through that painful experience again. He referred me to a brace maker; another idea that didn’t thrill me, but definitely better than undergoing the scalpel again.
November 3rd, 2006 – a day I remember well, although not fondly. We were caught in one of Vancouver’s worst ever downpours and Darrell’s electric wheelchair shorted out. We were soaked! The alleged brace maker turned out to be Rehabilitation Specialist of some sort. I have a semantic issue with rehabilitation and cerebral palsy. According to the Merriam-Webster Online Dictionary, to rehabilitate means “to restore to a former capacity”. Cerebral palsy occurs during or shortly after birth. There is no former capacity to restore.
Putting labels aside, this doctor proceeds to ask us a ton of questions unrelated to my foot, and adds, “I’ll ask you (indicating me) the questions, but I want your husband to answer to save time.” And this specialist is supposed to work with individuals to regain independence and self-reliance? It is interesting how medical professionals can least understand Glenda-ish. Any correlation with the amount of time they spend listening to their patients?
Almost as afterthought, he examined my foot. I was cold and wet, and he told me to just relax. Does this specialist know anything about athetoid cerebral palsy? A relaxed state is not something I can turn on and off on command. He concurred that I need a brace of some sort and referred me to an orthotist.
After a ten-minute appointment, Darrell and I left St. Paul’s Hospital and headed back into the downpour, at which point Darrell’s three-month-old wheelchair completely and totally died. We needed to get from downtown Vancouver to our home in Surrey. Darrell desperately called his friend who works at the University of British Columbia. Thanks to his friend pushing Darrell in his heavy chair to the Skytrain and then up the hill, we eventually made it home.
Friday, after a couple of canceled appointments due to bad winter weather, I had the first appointment with the orthotist, the brace maker. The appointment was off to the typical start of taking a history and ascertaining why I was there, but I had hope for her because she was listening to and, for the most part, understanding Glenda-ish. Then the Rehabilitation Specialist arrived late and the staff stood around discussing an upcoming conference and other clients – on my appointment time! I heard him mentioned he didn’t have my file because his secretary was on holidays, the replacement secretary couldn’t find the file or the dictation file on the computer. Considering she called me “Hyatt” when she phoned with the appointment time, my haunch is my name got messed up on the file, which subsequently was misfiled – another insignificant medical error.
Practicing some patience, they eventually rejoined Darrell and me in the exam room: two orthotists the rehab specialist, a physiotherapist, and a student, of course. They took turns poking and twisting my foot. Then they began discussing me as if I wasn’t there. I tried interjecting, particularly when the word botox came up. I said I would need a lot more information first, to which the specialist annoyingly replied, “Of course. We’re only strategizing.” Strategizing about me without me? I told Darrell that I’d rather have a rum and coke than botox to relax me for the casting. Unfortunately that didn’t get translated.
Not one of the four professionals explained the problem with my foot, what these braces or AFOs (ankle-foot orthotics) are like nowadays, or asked for my input. Some things haven’t changed in forty years, although I didn’t need to strip down to my underwear this time. I left with a sore foot and leg, and feeling less than an intelligent, independent and capable woman. In a way, I had been stripped. Would I have been treated the same way had I been an articulate able-bodied individual?
From what I understood from the discussion going on around me, a partial correction is probably the best that can be hoped for. My question is: if it hadn’t taken six years to get to this point, might the outlook be better? If I had been taken seriously by my family doctor back then, before my foot became worst, would a complete correction have been possible? Would this process have been quicker if I didn’t have cerebral palsy? Would I have been taken more seriously had I been a star athlete or a highly paid executive? How many doctors do I need to see in order to be heard?
These medical professionals can take a few lessons from the United Kingdom’s Good Medical Practice (2006), which “sets out the principles and values on which good practice is founded.” The duties of a doctor include:
- Treating patients as individuals and respecting their dignity and right to confidentiality;
- Working in partnership with patients by listening to them and responding to their concerns and preferences, and giving patients the information they want or need in a way they can understand; and
- Respecting patients’ right to reach decisions with you about their treatment and care.
It would be so refreshing to have all doctors treat me in this manner. Is that too much to expect?
If you enjoyed this post, consider buying me a chai tea latte. Thanks kindly.
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