ABSTRACT: A record of my visit to the RNAO meeting. Some comments based on my observations.
THE BLOG POST:
I ended up going to the RNAO Annual General Meeting on Saturday, April 18, 2015 and had no little trepidation about it. I had never done something like this before and so did not know what to expect. I left Markham via TTC on a beautiful cool Saturday morning with my small knapsack, a couple of notepads and a couple of pencils. I also took along a copy of Critical Theory: A Very Short Introduction by Stephen Eric Bronner. I read that book on the way down on the bus and train. All told, it took me an hour and ten minutes to reach the hotel downtown.
The venue was beautiful; the hotel had been newly renovated and it showed. I looked around the lobby and found a sign for the RNAO meeting downstairs, reached via escalator. I went down and looked at the different displays before any people were around. There were between fourteen and sixteen displays, all related to the RNAO’s work in different parts of Ontario.
Before going downstairs, I asked at a table with an RNAO rep (and sign) if I needed to sign in for the public meeting and was told I did not. In addition, there were no open venues until that one meeting. It would begin at 11:30. As it turned out, the previous meeting, at ten, ran a little late. I decided to go upstairs and have a cup of coffee while I waited. Best five dollar coffee I ever had.
The service was good and I must have looked out of place: Cherry red 14 hole Doc Martens, blue jeans, grey tshirt, blue alpha jacket and haversack. I certainly had the attention of the staff in the hotel. However, as they got used to my presence, I faded into the background as I enjoyed that aforementioned coffee at the bar.
I was at the bar watching football for about 45 minutes when I decided it would be time to go back downstairs. Even though I had been watching the escalators as I could, I was surprised by the number of people already gathered and gathering for the talk. Soon there were few standing spaces left outside the double doors that led us into the place.
Predictably, the previous meeting ran late.
When we got in there was a scramble for the tables and I took a space at one of them; after not realizing that the seat was occupied. I was under the impression that the materials were there from a previous meeting. I excused myself and moved over two seats and apologized, explaining it was my first time.
I told the six nurses at the table a little about myself, and I told them some of the research I was doing. I mentioned some of the experiences I had in outline. We chatted in this way for a while and then the meeting was called to order.
For the next hour or so I was alternately listening, making notes or observing the room as the speakers were up. I also tried to pay attention to the people on the floor but they spoke so quickly and in such a casual way that I could not capture more than an impression of what they said. In future, I would say that having two people capture notes in those situations might be helpful.
There were three groups of people: nurses, other medical staff and ‘civilians’. There seemed to be half nurses and half civilians as a proportion. I was not made to feel out of place – in fact one nurse said to me when I apologized for staring (I was looking for someone I knew) that they understood, particularly when I explained I might be on the Autism spectrum.
I found it enlightening, if almost overstimulating. There was a lot of information to take in and I could not capture it all. I wrote notes on one larger notepad at the table, three pages worth; on the way home on the TTC I wrote up my other notes in a small black notebook I could carry around unobtrusively.
While there were a lot of people speaking, and it was hard to get more than an impression, there are a few points which stand out. Van Bogaert spoke for his three minutes, and it was informative. He did not mention problems; like people being coerced or the idea that euthanasia was now an ideological reality in Belgium: since it was available, people were subtly expected to take advantage of it.
He did not speak about the Mortier case or the instance of the twins who died because they were going blind, when they were already deaf. He did not speak of disabled euthanasia organ harvesting. So his bias was clear. What was not so clear is what he was doing in Canada; did his presence suggest that he wanted these things for our country, and was he, by his presence endorsing those practices for us?
A guest at the meeting, a woman, spoke about her daughter who asked for assisted suicide last summer. Her daughter had Chrohn’s disease and it flared up. The patient was moved around from hospital to home to nursing facility for four months. She was also accused of drugs-seeking while she was in acute pain from the diagnosed ailment. The girl’s mother insisted that she had a hard time getting care or even attention over this time. The family also used up work vacation time and were ready to go on unpaid leave when treatment at home was finally arranged. The patient’s mother, who was herself a palliative care nurse, spoke about these things.
Generally, people spoke of the need for more and better organized palliative care in Canada, if not Ontario. They also called for better education of nurses. One nurse, who worked at a children’s hospital, asked about euthanasia for children of van Bogaert. I do not recall his reply, but it was something like the regulation was good and there were no problems.
I stood to speak and talked of my stepfather being euthanized in front of me; I also recounted my mother’s death and the apparent abuse she suffered from her husband before she died. I also recounted my experiences in care and the fact I was invisibly disabled. I pointed out that we had other problems to worry about, and now we had, as patients, to worry about others wanting to possibly kill us. I said I was against it; so were a lot of my friends, and we thought this was a bad idea. We needed better palliative and patient care.
I had a few people come up to me afterwards thanking me for speaking up. I got the impression that they liked the idea that I was not intimidated nor was I willing to allow some ideas to go unanswered. I simply hope I was respectful enough that I can go to other meetings.
There were some things I did not hear; I did not hear about patient’s rights other than the right to die. I did not hear about patient care absent the idea of killing them. I do not remember hearing anyone say that mistakes or problems could arise. I also do not remember hearing anyone talk about disability rights specifically. This leads me to think that someone should go next year who has a visible disability, if this issue is still being discussed.
Now that I have seen how these meetings work, I would be open to going to others. While I did not achieve my object of confronting van Bogaert directly, I did get some point across about how this notion of killing patients was a game-changer and how I thought it was a bad idea given that we have discrimination in care. I sincerely hope I can get to more venues like this to keep the pressure up, such as it might be.
As I was heading to the venue, I was reading the book I talked about earlier. My eye caught this phrase: “Hegel believed that progress is ultimately furthered by the person who is out of step with the majority. Only this person, the genuine nonconformist, really experiences the constraints on freedom. Only this person is in the position of questioning the prevailing understandings…” [Bronner, 2011:77] That certainly is what it felt like for me when I was offering small, subversive comments about things that were said by the speakers. I know some of them hit home by the reactions that I got.
The small resistant gestures can add up over time, and the critical part of this is that we in the disability community keep our presence known to question and speak truth to the prevailing power: we are not dead yet, and you can do nothing about us, without us. This is only a start, but we need more. I suggest training people in sociological field notes and going to more of these meetings. Only that way can we get a notion of what it is like on the ground for those who might wish the vulnerable and medically fragile, dead. And they can do that over my dead body.