On October 23rd last year, the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living, sponsored a public dialogue at the University of Alberta called
The Modern Pursuit of Human Perfection
Defining Who is Worthy of Life
The event began with a panel of people who talked about their experiences with children, doctors, families, and disability. There were then several short commentaries, followed by some open discussion. The event was free and open to the public, and we have videocasts of all parts of the event to share.
Over the next month or so, we will put the videos of the public dialogue up on the What Sorts blog; each runs for 5-10 minutes or so. Today we have the introduction, from Anna MacQuarrie (from CACL), Bruce Uditsky (from AACL), and Dick Sobsey (What Sorts Network), which should help to set the context for the event as a whole. We welcome your comments on this and any other vids in the series.
To get started, take the following poll, and then have a look at the introduction below. We’ll start with the panel talks next week.
You can also view the introductory video, and others in the series, directly at YouTube if you have trouble viewing them here. Sorry, but there are no transcripts at this point, but if anyone wants to do some, drop us a line! A transcript follows the video.
Anna MacQuarrie: My name is Anna MacQuarrie, I work with the Canadian Association for Community Living. I would like to start by thanking our co-host this evening, the Alberta Association for Community living and the What Sorts Network, without whom we would not have been able to pull this dialogue off this evening. So, we really appreciate your partnership and your help in making this happen. Tonight is a public dialogue and it’s one of a series that’s been going on across the country. The Canadian Association for Community Living is celebrating their 50th anniversary in November and as part of our celebrations we have developed a national public dialogue series, and we’ve been traveling across the country talking in similar formats around CACL’s ten objectives and our objectives are quite broad-ranging. They are things like inclusive education, employment, closing institutions. One of them is achieving equality rights and recognition and for us this issue is a really important rights and equality issue in ensuring that there is ‘genetic justice’ which is a conference session that we’re working on and a new phrase, which I quite like. I really just want to thank everyone for coming this evening. Briefly I will introduce, in the middle of the table is Dick Sobsey and Dick has kindly agreed to moderate the panel portion of this evening and really once we get through some of the panel presentations we hope to flip it to the audience and have more of an interactive dialogue on the issues. So Dick will be our moderator for the evening, and I will turn it over to Bruce and he will introduce the panelists.
Bruce Uditsky: A little applause for Anna there?
(applause and laughter)
Bruce: I’m Bruce Uditsky I’m the CEO of the Alberta Association for Community Living and just to add it’s our pleasure to be co-hosting this occasion with the What Sorts Network and Canadian Association for Community Living. As an advocacy organization representing individuals with developmental disabilities and their families, we’re deeply committed to addressing issues like eugenics, bioethics, medical ethics, and the things that relate to them that actually are threatening if not actually harmful to the lives of people with developmental and other disabilities, so we’re very pleased that CACL wanted to hold a public dialogue across the country. I’m only going to introduce some of the panelists, because I don’t know, I haven’t met yet Simo Vehmas from Finland, although we’re thrilled that he’s here this evening to share some thoughts and observations with us and I’ll allow Dick to provide a more thorough introduction, actually. But sitting to my right or your left is Wendy MacDonald, who is the current president of the Alberta Association for Community Living and a parent of two sons, one of whom has developmental disabilities, Sam Salone… I should also mention that Wendy owns a company called Possibility Works, which provides human relations and professional development training. And Sam Salone, who is a parent as well, who speaks about family challenges about having a daughter with significant medical issues and needs, and I’m not sure if anyone actually wants to meet him at the moment because he’s actually a stock investor (laughs). But maybe he does actually have some helpful advice.
Wendy MacDonald: He was a stock investor. (laughs)
Bruce: So there are other ethical issues for us to consider, that’s not one of them tonight. And then on the other side of Dick is Colleen Campbell, who operates a day home and is a mom with disabilities and will speak about her experiences with the child welfare system. And Anne Houston who is an associate professor at the University of Calgary and the director of the Community Association and Disabilities Study Program in the faculty of medicine. We wanted to have short panel presentations this evening in order to stimulate the dialogue, actually provide some room for thought and discussion, and we also wanted to stretch the agenda actually and so whether it’s successful or not remains to be seen, but it would be entirely my fault and responsibility if we don’t achieve that goal. I think it’s relatively easy for people to understand, for example, the roots of sterilization, for example, and the changes we made around that. I think it’s much more difficult to see how in fact so little has changed with respect to our values around people with developmental disabilities actually able to be able compared (?). And so we wanted to suggest that there is both the evident eugenic ideas historically and then the continuing deeply rooted values that emerge in other ways today. So without further ado, I’ll allow Dick to proceed.
Dick Sobsey: Hi everyone. I’m Dick Sobsey from the University of Alberta. I also want to take a minute to introduce Simo Vehmas from University of Jyvaskyla in Finland. We’re very fortunate to have Simo visiting us this week. He’s known in Finland as Famous Vehmas (laughter). Simo is at the University of Jyvaskyla and he is in the Department of Special Education, but his area is really around the philosophy of disability and he’s done a lot of interesting work on sort of conceptual ideas of how we think about disability. He just brought with him, this is almost by magic, he receives his newest book here in Edmonton, which does have a wonderful cover, Arguing About Disability, that he edited along with Tom Shakespeare and Kristjana Kristiansen. So, we’ve asked him to join us tonight and after other people speak briefly he’s just going to give us some thoughts and reactions and most of what we want to do is we want to have some discussion tonight. And so, each of the panel members will speak briefly and then we’ll open it up to some of the questions that Bruce has already alluded to: what are we doing, and why are we doing it, around issues of genetic counseling, life and death issues, issues that speak to who we really want to be part of our lives and part of our society. So, I’m going to go ahead and turn it over to Wendy to get us started tonight.