It seems that I find myself back here every so often having had a BIG experience.
Last week was certainly that. I attended the BCANDS Indigenous Disability Canada’s 2022 Indigenous Disability and Wellness Gathering in Victoria, BC.
It was three intense days of presentation, mostly done ‘fireside chat/panel’ style. The beauty of this way of scheduling meant that at no time did I have to choose a more preferred presentation to attend. . .all of them were sequential, in the same room. There was no need to create a schedule for myself, just sit down and be ready to listen.
I received PD funding from Selkirk in order to attend, and took graphic notes of each of the presentations (all but one, actually). I made new friends and made important and valuable connections with people in organizations I’ve only been reading about or working with from a distance. It was a treat to be back in person – the real loss during COVID has been the opportunity for organic networking. This conference had constant opportunity for networking.
There are a few presentations that continue to be very present for me, one of which was the fireside chat/panel on MAiD (Medical Assistance in Dying) on the first afternoon. I’ve included my notes from that talk below. Small disclaimer, these notes were intended for my own use and so may not reflect the main points that each of the presenters intended to get across, but represent my own knowledge gaps and interests:
Image Description: Orange background with white bubbles. Caricatures of speakers are drawn on the white bubbles, each with speech bubbles attached to them. The background orange has the words ‘racism-ageism-ableism’ in a lighter orange throughout. Title reads MAiD, 1pm – 2:30, Nov 15, 2022. Words in speech bubbles as follows: Krista Carr: Bill C-7. If you have a disability and are suffering intolerably you can qualify for MAiD. You should have the right to die after the right to live tolerably. Mental illness as a sole condition will qualify people for MAiD as of Mar 2023. This is a new form of eugenics in Canada. Kerri Joffe: [there are] two tracks – 1 for end of life and 1 for not end of life. Track 2 is a violation of human rights. People are disproportionately effected by the circumstances they are in. This legislation violates the right to life. We are trying to leverage use of international human rights. People are applying because they don’t have other options. Young people in Ontario become housed in Senior’s facilities. People do not have actual alternatives to live in community. Dr Ramona Coelho: People who otherwise would recover and live in community are dying. It takes 2 years to recover from major accident or injury. The majority of people do not know what is best for their future self. [I have] concern regarding cluster and copycat deaths. Mature minors may soon have access to MAiD. These ‘solutions’ are being suggested by the healthcare teams and team members. The timeline from introduction of MAiD to death is very short. Rod McCormick: I have the humbling experience of degenerative disk disease. Most youth do not know what treatment is available to them. The expansion of MAiD is happening too fast. I have grave concern about the expansion of MAiD to minors. Indigenous people are over-represented in the healthcare and judicial system. Getting the proper and timely help makes all the difference. Mainstream societal attitudes fail us all.
There were some pretty major revelations in there for me in terms of who qualifies, who will soon qualify, and how incredibly disproportionately the disability, first nations, indigenous and other marginalized communities are affected by this. I mean, I already knew that the backdrops of ageism, racism, and ableism would make it harder for specific groups, but these speakers so articulately brought that home for me in a deeper way.
If you take a minute to read the image, you’ll see that some of the salient pieces (for me) were around the call for services to support people to live with dignity before offering them the opportunity to die with dignity. That people in abject poverty, on government assistance, and with persistent multiple barriers are likely to be offered MAiD or the possibility of going back to their prior struggles and desperate circumstances. Some of the stories shared were galling. There is no real choice when the reality of living is intolerable – but for preventable reasons.
The presenters shared that there is possibility that soon this will be available to mature minors – something that has slight differences in legal definition and status from province to province much like the age of majority varies. Generally a mature minor is someone who is deemed capable of making their own decisions in other areas of life, and thought to be “capable of fully appreciating the nature and consequences of medical treatment [and] can give legally effective consent” (Osborne in Irvine, Osborn, and Shariff).
Mature minors can be quite young – please know that I don’t actually think that someone turns age of majority in their province and magically becomes an adult, I get the nuance – but do wonder why we wouldn’t be pouring resources into lifting people out of poverty, giving them food security and social connection, transportation, and culturally appropriate care. Why wouldn’t we be doing everything in our power to raise the minimum amounts of money people – particularly people with PWD status – are receiving for housing? Their incomes? Why are we making it so hard for them to earn money and better their own situation while they are on assistance? Why would we offer people such a final alternative?
It keeps coming back to stigma and eugenics, for me. The societally held concept that people who are disabled are not as valuable to society and so should not be supported to live dignified lives. That people are to be dictated to about what they can and cannot do, who they can and cannot love (don’t get me started about ‘spouse in the house’ clawbacks). We continue to treat people with disabilities as less-than, infantilizing them, creating impossible-to-survive systems for them, and now, ultimately, offering them a way to cost the whole ‘system’ less through dying.
These are my own thoughts and feelings – they are, however, based on what I’m hearing and seeing from people in the communities most effected. I’m not against MAiD in principle, but the way that it’s playing out must be witnessed, must be criticized, must be modified.
Michael Fraser accessed MAiD – as a person with chronic pain, was unable to afford a more accessible home, and someone who was worried about paying his rent.
Amir Farsoud applied for MAiD. Living with chronic pain and facing homelessness, he applied. The community raised money for him and he is no longer going to access MAiD.
Our social safety net can not be called a net. It’s not catching people as they fall. MAiD is offering an alternate route to the same destination and promising a much shorter wait time.
Points of view explored here are my own and are part of my ongoing learning about the needs and circumstances of people living in Canada. I welcome more information, and am open to changing my mind. Also – if you know of an online critical disability studies Master’s program. . . shoot me a link!
References:
Osborne PH. The consent of minors. In: Irvine JC, Osborne PH, Shariff M, eds. Canadian Medical Law: An Introduction for Physicians, Nurses and other Health Care Professionals. Toronto, Ont. Thomson Reuters, 2013:44.