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.

About the author: Julie Devaney is a patient activist living in Toronto. She is the author of My Leaky Body (Goose Lane Editions: 2012) and co-editor of MESS: The Hospital Anthology (Tightrope Books: 2014). My Leaky Body was one of Quill and Quire’s Top Five Non-fiction books of 2012. Julie was named a Woman Health Hero by Best Health Magazine in 2011 and has been profiled on CBC Radio’s White Coat, Black Art and The Current, in Chatelaine and the Toronto Star. Her writing has appeared in The Globe and Mail, Toronto Life and numerous anthologies. Julie has given hundreds of presentations at medical schools, nursing conferences and theatres throughout Canada and in the US and the UK using participatory techniques with patients and professionals to formulate strategies for change and innovation in healthcare. Her work at the University Health Network in Toronto has transformed real patient stories into staff training.
Category: Events, Featured
  • Linda Williams December 14, 2016, 2:13 am

    Now that I am disabled, relative to you not so much, I find myself wondering about the risks of procedures that might render me speechless (as in stroking out whilst having heart issues addressed), and I realised I’ve become fearful and thus a bit mean to my husband who I feel should be more empathetic. I also realise I would be too ready, should I have a stroke, to give up. I think I am too lazy to be rehabilitated, or afraid to be unable to speak again, and that is what I enjoy most. All of that preamble is just to say once again how much I admire your tenacity and grit. Nothing lazy about you.

    • Julie December 14, 2016, 8:57 am

      Hi Linda, I do appreciate your supportive words but I also wonder about the usefulness of lazy/not-lazy when we apply it to ourselves. You’re talking about situations where you would be completely vulnerable with potentially terrifying results. Resistance and anger are more signs of strength than apathy. And I would definitely be leaving out important facts if I didn’t acknowledge that I too get snappy at times. Not being able to do things for myself requires more patience than I have at times.

  • Linda Williams April 15, 2017, 12:31 am

    Dear Julie, I have taken your words to heart and acted on them, mostly to great effect. Profound thanks.

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