#CASDASummit2018: Day 2 (Pt 1)
Day 2 of the CASDA Summit (Thursday April 19) started out on an interesting note. And by “started out”, I mean 1 am.
I spent the first two hours of the 19th working on the script for my portion of the “First Voice Perspective” panel – finishing writing it out, and then reading it out loud and making edits. (I spent from 1am to 2am doing the latter.) Then I managed to crash – for a while.
The Summit Day 2 session itself also started out on an interesting note.
We got to hear from Senator Wanda Thomas Bernard, who was appointed to the Senate in November 2016 (there’s a brief bio on “Noteworthy historical figures” on the Canada website). She was most impressive, focusing her speech on intersectionality, lifespan issues (one of the few to mention adult autistics on Day 2), and inclusion in the school system. Also, autistics in military families – the very nature of what their parents do involves a lot of moving around. She also told us about her grandsons, the younger of whom is autistic, and a genuinely amusing (and heartwarming, not inspiration porn) story about his decision that he will be a senator when he grows up. (And yes, sister of mine, she is from East Preston.)
Following the opening, there was a panel on Indigenous Leadership and Innovation. The speakers were Victorine Lafferty, Seonag Macrae, Ken Robertson, Bertha Sutherland, and Theresa Sutherland. Ken Robertson, Bertha Sutherland, and Theresa Sutherland are all indigenous peoples. (Again, bios for all panelists can be found on the CASDA Website – at least until prep is started for the 2019 summit.)
The first speaker was Victorine Lafferty, who spoke to us about the government of the North-West Territories and some of what they’ve been doing. The first thing she did was explain how the government is set up – it’s a consensus gov’t rather than a party gov’t. There are 18 seats, and all members are elected as independents. They meet as a caucus after the election. 7 of them take cabinet ministry positions, and act as the “official government”; the other 11 act as the “official opposition”. She noted that consensus does not mean unanimous – what is needed is a simple majority.
Developing a ten-year strategic framework for Persons with Disabilities came up as a motion in the assembly. The framework was released in February 2018; the Action Plan will be released in the late spring/early summer. There was also an inventory of services released.
The NWT Disability Matters Companion Document is available (in English): Here. (Please note it’s a PDF file.)
The next one to speak was Seonag Macrae, who is the CEO of Community Living British Columbia. She explained that previously, indigenous peoples had to come off the reserves to get access to the services from CLBC, because the CLBC is provincial jurisdiction and the reserves are federal jurisdiction. However, an arrangement has recently been made between the BC government and the Canadian government to provide for services whether on or off the reserves, and then divide up who pays for what. The current greatest challenge that the CLBC faces is building trust – the CLBC is seen as being a government organization, but it’s actually a Crown Corporation.
Then we got to hear from Ken Robertson, who is the chair of Four Directions Autism, an organization for parent-to-parent support among the indigenous population. He spoke mostly about the systemic barriers preventing indigenous peoples from getting the support they need, and how pleased he is that they are starting to come down. There’s still a long way to go, though. Another thing he said was, “We are not just a number, not just 1 in 66. We are a diverse community, differing backgrounds, crossing ethnic groups and cultures.” (Referring back to the NASS report.)
Following him was Bertha Sutherland, who is a member of the Nishnawbe Aski Nation Women’s Council, and who has a now-adult son who is autistic. She talked about how parents end up keeping their children out of school because there’s no support for them – she had to move her son off the reserve for school because he was getting bullied. There is no training and no trained professionals, especially in the northernmost communities. There’s a report called the “Forgotten People Report” – it will be posted on the CASDA Website, likely some time this week. Some people even resort to putting their children into the Child Welfare system just so they can get the supports they need (and even that doesn’t always work).
The last (but hardly least) speaker was Theresa Sutherland, also from the Nishnawbe Aski Nation Women’s Council. Her main point (I was starting to flag a little on my notes at this point, and the rest isn’t nearly as detailed as this first session) was that there are no words for “autism” or “special needs” in Cree, and so few among them have English, that as a result, they have difficulties understanding the concepts. There’s still a perception of being “crippled” or “damaged”.
There was no time for the questions that came up to be asked during the panel, but like with a number of other panels this year, the questions and answers will be going up over the next little while on CASDA Social Media.
So, for the next couple of panels, I’m going to be relying more on my Twitter feed than my notes….
The next panel was Research to Practice: Showcasing Research in Canada, on the research being done and how it gets translated into practice. The speakers were Evdokia Anagnostou, Lonnie Zwaigenbaum, Mayada Elsabbagh, Stelios Georgiades, and Stephen W. Scherer.
Evdokia Anagnostou’s very job involves collaborating with people doing basic science work (biology, genetics, biochemistry, etc.) and then try to translate it into practice. Essentially, a clearinghouse for data (as I recall understanding what she was getting at).
Lonnie Zwaigenbaum – who was a member of the CAPP Working Group – talked about how they were following children diagnosed as infants and toddlers ten to fifteen years ago. They’re now going to fifteen-year-olds and asking them, “What are the joys and challenges of their autism?” Was delighted that he acknowledged that there are joys in being autistic, as well as the challenges. Kudos for that!
Mayada Elsabbagh talked about how there is currently a delay of about 20 years between the research being done, and the results being implemented, and they’re trying to reduce that. She also made an excellent point that I quoted in my Twitter feed: “We already know that autism is diverse, so how do we reconcile that with wanting to speak with one voice? Focusing on common ground, to start with.”
Stelios Georgiades – the other member from the CASDA Working Group on this panel – talked a lot about MacART (the McMaster Autism Research Team), of which he is co-director. What sticks with me from his talk is his comparison of MacART with CASDA – there are both individual researchers and research teams, or “entities”, that make up MacART, in much the same way as CASDA has both individual members and organizational members. One of the other things that he said was that currently, we have a strong culture of research; what we need is to develop a strong culture of implementation as well.
Next was Stephen W. Scherer, a geneticist – and let me tell you, a lot of us at the autistics’ table were not happy with his talk. He explained how about 20% of the autistic population has been gene-sequenced (at least in Canada) and how they can use that information to specifically target medications. “Like cancer,” he said, which had us furious. My tweet about that: “Dr. Stephen Scherer: Please, *please* stop comparing autism to cancer. If you want to make a comparison to explain what genetics research can do, don’t use actual diseases.
#CASDASummit2018 #ResearchToPracticePanel #ActuallyAutistic #SickOfDiseaseComparisons”. And a question asked by one of the people at our table about whether people might use that information to “edit” autistic genes (and/or abort fetuses that show those genomes) got a rather disturbing response – I’m paraphrasing, but he pretty much said that no one would do that in Canada – we believe too much in diversity – but that he couldn’t necessarily say the same for other countries with whom research information is shared.
We were very much not impressed at all.
So, that was followed by lunch – which didn’t have the greatest selection for my personal tastes, unfortunately. (While normally I love cheese, I’ve been having heartburn issues with it lately, and tomatoes just make it worse.) So I ate a bit of lunch, but not terribly much.
The first panel after lunch was The Intersection Between Research, Practice, and Policy. The speakers were Karen Bopp, Pat Mirena, Jessica Brian, and Isabel Smith. (Note that I’m hoping to get a copy of the presentation, because I was starting to fade at this point and my notes are two rather disjointed sentences only. If I do get a copy, I’ll provide more info on what the talk contained and inform all through email and Twitter that this post has been updated.)
Karen Bopp, who was the moderator, started out by telling us exactly what “policy” means, in relation to the topic of this panel. Then each of the speakers gave us a basic overview of support intervention trials they’re involved with in each of their provinces: BC, Ontario, and Nova Scotia and New Brunswick collaborating (respectively).
As one of my tablemates noticed, all of this was about children. In fact, there was very little mentioned about adult autistics on this second day, save for Senator Thomas Bernard’s opening speech, Bertha Sutherland’s mention of her son, and our panel (which will be posted about tomorrow).
After that was an hour long peer-to-peer session: Working Together Toward a National Autism Strategy – Peer to Peer. I had decided to skip that session that morning, and it was just as well, because I was seriously flagging by that point. Especially since we were informed that the lights would have to be bright for our panel in order for the recording to happen.
So I retreated to the Green Room, which was available as a quiet room, with two of the others who were on the panel with me, in order to relax and shore ourselves up for our panel. We went ahead and read our talks to each other, in part to get feedback before going out there to do them, and in part (at least for me) because I didn’t want to upset them unexpectedly because of some of the content of my talk.
So, there’s Part One done. I’ll be posting Part Two of Day 2, with the details of our panel and that evening, tomorrow at some point.