International Day of Persons with Disabilities
On Friday I had the great pleasure of joining ARCH Disability Law Centre’s celebration for International Day of Persons with Disabilities. The theme was disability rights and health justice. Dr. Nav Persaud facilitated a panel discussion between Johanna Macdonald, Dr. Jeff Nisker and me about our experiences translating human rights into practice. On this topic, Johanna made my favourite observation of the panel: “Culture eats training”. I was reminded of all of the young nurses and doctors I have worked with in educational workshops across the country who repeatedly echo this theme. They have spent years learning how to collaborate with patients and respect the rights of people with disabilities and then they find themselves in clinical situations with senior staff who demand they do the opposite. The trauma they experience when being bullied into violating the consent of vulnerable people is profound.
In my most recent hospitalization, I had the good fortune to be cared for by a student nurse for my last two days. She was militant about respecting me and my rights as a patient and this came through in every aspect of her practice, including her enthusiasm for wound care (I was going to say infectious enthusiasm because she really did take me down that road with her, but it just kind of sounds wrong in this context). Even the young surgical residents who I saw at least twice a day for the ten days I was recovering were some of the best I’ve encountered in my decade and half of interacting with surgical residents. But it’s hard to tell how much of this is training, and how much is natural affinity for humane practice paired with a resilience against the more toxic aspects of medical culture.
Two hospital social workers approached me after the panel wrapped up to continue this discussion. We talked about the need for teaching emotional competency in schools from a young age and given that this isn’t happening, my cynical conclusion: we need to script staff with standardized language. I really believe this. For staff who don’t know what to say or how to be respectful they just need to memorize a few lines the same way as they memorize other clinical facts. This strategy isn’t meant to replace the harder, longer term work of creating stronger and more authentic relationships in clinical contexts. I still believe in the power of art and storytelling to transform staff perspectives and create mutual understanding. I just think in the meantime we could be creating some communication tools that rely less on spontaneous displays of humanity and more on reducing the harm caused by careless words.
The panel and discussion touched on many far-reaching themes and important issues and to get a better sense of that you can peruse ARCH’s Twitter feed. This was definitely the soonest I’ve ever been out to speak on a panel after surgery and among other things it was cathartic. There really is no better antidote to the powerlessness I felt at the hospital than speaking into a microphone to a filled room of like-minded disability rights activists at Metro Hall.
Image, left to right: Johanna Macdonald, Julie Devaney, Nav Persaud.