Ableism cannot be unlearned part II: The importance of considering exceptions
Disabled bodies are exceptions by definition — I’ll show this with a very concrete example from my personal life. This story is not about my disability per se. It is about specifically how my disability was dismissed by a medical system that was not able to help me in a moment of need.
I have been disabled for more than 20 years. I became paralyzed at my left arm when I was 17 after a car accident. I volunteered for amputation 10 years later for both medical and personal reasons. My stump and I lived together happily ever after. Until September 1st 2023.
Phantom pain is not only an excruciating pain; it is also a pain you are not sure you can trust. It can magnify little hurts and underplay huge ones, like a bone fracture. Or a shoulder dislocation. This didn’t seem to matter to the ER nurses, who decided I was not in need of urgent medical attention when I went to the hospital on that day.
I told them that I believed my shoulder was dislocated. Without even visiting me, they decided that a dislocated shoulder was not possible because I had no accident.
I know, I get it, Quebec’s medical system is in horrible shape these days, and hospitals are overwhelmed. But mind the reasoning here: it was not possible because I had no accident. The dislocated arm category was not compatible with the no accident category.
Of course, my shoulder was dislocated. The doctor who saw me after 10 hours of waiting was very competent and kind. He explained to me that my shoulder was dislocated as a consequence of the paralysis. Just like that, year after year, my paralyzed muscles became too weak to sustain the stump’s weight. The only thing he could do for me was to prescribe painkillers and a medical visit with a shoulder specialist.
The shoulder specialist, right. So, the way it works in Quebec is that once a doctor makes a request for a specialist, this request goes into their system of waiting lists, and at some point, someone calls you to make an appointment. In the meantime, you are supposed to go home, take your painkillers, and patiently wait.
This happened 12 months ago. Still no news. No one ever called me to follow up on my case, never mind a shoulder specialist. How could this happen?
A specialist request is a form in which a column lists some injuries, and the other column assigns a letter to describe the degree of “clinical priority”. So for example, a heart attack would get an A for very high priority, whereas say a bunion gets an E for very low priority. Mind though, the doctor cannot assign the priority. The doctor can only circle the injury, but the priority letters are already printed next to the injury label.
So, what letter does a dislocated shoulder get? C. What letter does an irreversible dislocated shoulder of a paralyzed stump with phantom pain get? Always C.
Of course, doctors can write comments, and the ER doctor who saw me did indeed write very clearly that I was an urgent case due to my unique condition. Unfortunately, these personalized comments could not override the low-priority category in which my case was placed, and this is a dumb and sad fact.
I am not someone who can just stay home, take the painkillers, and patiently wait. The common temporary remedies for dislocated shoulders, like arm braces, would not be useful in my case as I had no arm. It took me months to find a company that was able to build a custom brace for me, and it ended up being too uncomfortable to use every day all day long. So I had to stay home most days, working remotely, with pillows supporting my stump at all times, and painkillers barely working on phantom pain.
Even passing on the physical and psychological suffering that this situation created, there is also a significant financial aspect to consider. Unwilling to patiently wait, after endless searches, calls, and rejections, I finally found a private clinic that was able to help me. The best available option was surgery fixating my stump to my shoulder; despite fears, uncertainty, and significant likelihood of failure, I decided to try. As you can imagine, the costs were high, and my insurance was unwilling to cover the costs of a medical treatment I could have had for free in the public system.
Now, one year later, I am fine. I healed from the psychological suffering, and my shoulder is good. I am also familiarizing myself with a new mechanic arm, an unexpected positive consequence of this horrible story that I may write in another blog one day. Yet, I can’t help but think that this horrible story could have been avoided.
In my previous ableism story, I wrote about my experience with another institution, and I let things pending. At the time, I interacted with many people working in that institution to help them figure out ways in which the discriminatory process I underwent wouldn’t happen again to other disabled people. In the last call I had with them, they told me that my experience had inspired them to create ad hoc teams to follow up on particular cases, or “exceptions”. At the time, I was confused and didn’t know what to think of this resolution. Now I understand better, way better.
A system that is too rigid to consider exceptions is destined to perform unjust treatment to some, even with no intentions to do so. And as disabled people are, by definition, exceptions to the norm, we will inevitably be the most likely victims of such a system.
On a personal level, perhaps there is no remedy to the arrogance of someone unwilling to consider your unique case just because it doesn’t fit their mental boxes, like the nurses who saw me that night at the hospital. On another institutional level, however, I am shocked by a system that is too rigid even to consider the opinion of its own experts because, yet again, it does not fit the right boxes. This is another tragic example of bureaucracy beating human; countless artworks have described it. And yet, there are very specific human groups that pay higher costs of this nonsense dystopic reality.
I am indeed an exception, and I expect to be considered as such.
Written in September 2024.
