The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life

The What Sorts Network, in conjunction with the Values and Ethics Task Force of the Canadian Association for Community Living (CACL) and the Alberta Association for Community Living (AACL), are pleased to announce a public dialogue on bioethics, medical ethics and the implications for people with disabilities. Details below, and in the poster, which you can download. Please pass the word along to any who may be interested. The public dialogue will kick off three days of jointly organized activities, including a free full day workshop, Families and Memory, on Friday 24th October, and a special invited session at the Western Canadian Philosophical Association: “Philosophy, Eugenics, Disability in Alberta and Places North” on Saturday 25th October. Further details shortly on the What Sorts blog, and at the What Sorts website. (Free registration for Families and Memory now open at the website.)

When: Thursday, October 23, 2008, 7-9pm

Where: ETLC 1-013, The Suncor Lecture Theatre, University of Alberta, Edmonton

Contact: Matt Mandrusiak, AACL, 780-451-3055, ext.226

Click here to download poster

Text of the poster beneath the fold. Come on out and make your voice heard!!!!

In Canadian history, debates have raged over mercy killings, euthanasia and selective non-treatment. As new medical technologies are developed, new debates are emerging as to what sorts of people there should be. Increasingly these practices and the ethics governing them are being developed and applied with little opportunity for public debate. Yet, the implications are not only affecting the world tomorrow but are impacting the lives of people with disabilities today.

In many ways these are not new debates. Throughout history different cultures have called for the elimination of people with disabilities, while others have argued that people with disabilities are human and necessary to the human race. In Alberta, the embrace of eugenics and the mass involuntary sterilization of thousands of Albertans (individuals with developmental disabilities, Aboriginal women, immigrant women) is but one reflection of the desire of some to perfect the human race.

For many, the uncomfortable history of the eugenics movement and its relationship with genetic technologies, have raised flags of concern about the potential harms that could arise for people with disabilities from the use of the tools of genetic technologies. This raises many profound questions about health care policy and practice.

This FREE public dialogue will explore the above critical questions and others, such as: Is genetic information neutral? Who should decide what constitutes valued human life? What values should govern bioethics and medical ethics? What does it mean to imagine a world without people with disabilities? How does the modern approach to bio-ethics and medical ethics differ from past eugenic practices?
Join us to engage in this dialogue and share your thoughts, experiences and opinions on these critical issues.

This public dialogue is part of a national series, A Matter of Diversity, happening across Canada as part of CACL’s 50th Anniversary. The purpose of the public dialogue series is to speak with Canadians and to create a public space to promote the values and beliefs that foster inclusive communities, and to explore common ground with others who may share different views and perspectives.

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9 thoughts on “The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life

  1. I’m confused to what exactly you are talking about are you saying that in Canada they are “working” on new technology or that they “have” the technology to genetically ‘repair’ people with disabilities?

    And then are you asking how we feel about it?

  2. Gev,

    On the second question: yeah, any thoughts that come to mind are welcome, either here or at the public dialogue itself. But I guess it might be hard to have any thoughts or feelings about “this” until you get an answer to the first question!

    There’s a vagueness in the description that, no doubt, is partly responsible for whatever confusion you’re suffering here. (Another case of “Do not adjust your set: the fault is in reality”.) I think what we’re trying to say is this: New and emerging technologies, including genetic technologies, give us a heightened power to modify people, both within their lifetimes (e.g., “repairing” individuals who already exist) and across generations (e.g., changing what kinds of people are created in the first place). Many of these applications impact differentially on people with disabilities. We want to foster public dialogue about this, especially in the Canadian context. The technologies, both existing and those on the horizon, are not specifically Canadian, and I guess neither are the general issues in play. Gregor Wolbring, if he’s tuning in, might have something to say about future technologies, but the issues come up with those that are familiar to us already: genetic screening, “speed legs” (as used by athletes in track events at the recent Paralympics), stem cell research in the name of “curing disability”, to name three. You might be able to think of others that come to mind, some genetic, some not. Does that help at all?

  3. Kind of but not Really.
    I want to know one thing:

    What exactly makes you feel it necessary to “fix” people who are born with a disability? It confuses me to hear a group of individuals looking at another saying that “they need repairing” like they are a machine. Is there a particular reason, or do you feel obligated to try and help them ‘better’ themselves?

    Also, if you are trying to better those with disabilities don’t you think that maybe you’re in reality crippling them?

  4. Good point. I think myself that that is often the case, and more generally that a lot of what passes for common knowledge about disability and the necessity for intervention is misplaced. The public dialogue, which we’ll likely post here at least in parts, is about taking up questions like this, and challenging one another to think more critically about commonly accepted views and practices.

  5. Hi Rob, Gev,

    I guess it might be worth letting people know that, for the purposes of the what sorts project, the title itself is under interrogation, rather than simply framing a dialogue that takes for granted that some people are more worthy of life than others, or that something like ‘human perfection’ is either achievable, desirable, or even comprehendable.

    We seem to be in the habit of giving provocative titles to things, without the requisite ironical quotation marks. For instance, I met an expert in the global history of eugenics the other week, and she was really pissed off about the title of our project (“what sorts of people should there be?”), because she felt it sounded more like a rallying cry for new eugenics than a provocation to think about social norms and those whom they exclude and discipline.

    As it is, I guess the public could be excused for thinking the project is prescriptive of humanity, more along the lines of Julian Savulescu or John Harris, instead of putting into question such prescriptive practices.

    Just a thought.

  6. I’m not angry. Personally I’m just curious i saw the headline on Word press and i wanted to see what this blog was talking about.

    I’m curious because i myself have a disability and i’m doing perfectly fine with it. In fact i know several people with their different disabilties who live with them and don’t know any other way. That’s why i asked you that question, because not only do i HAVE a disability. But i am a DT (developmental Tech) This technology will in the end basically take me out of Job. I don’t understand where you’re coming from – simply because i work with those who have disabilties AND i have one.

    That’s why i asked you this question earlier >> ‘ if you are trying to better those with disabilities don’t you think that maybe you’re in reality crippling them?’

    I know that if the people i worked with had their disabilities removed/taken/fixed they would still have to be in therapy simply because they’d need to know how to live without it. it’s not that easy, someone who has had a disability all their life has become adjusted to it. Once it’s gone it’s like someone has taken your leg off. This is something you need to seriously consider because you might be doing them a serious injustice instead of helping them. That’s all I’mm asking is if you’ve considered this. :)

  7. Fair enough. I think what Jo was trying to say about the blog and the team behind it is that our interest in simply raising questions about eugenics, disability, technology, and social policy is often taken to be a red flag for those ready to see us as advocating that disabilities be eliminated, or that technologies will pave a royal road to overcome or “cure” disability. There may be those who crop up here who flirt with such views–ok, not in such a caricatured form–but we’re actually a consortium of variously abled / disabled people working together with broadly disability-sympathetic organizations, mostly in North America–to engage in just the questions that you’re raising. (And then we just go ahead and talk about a bunch of stuff that doesn’t have that much directly to do with disability as well, just to keep everyone confused.)

    So hopefully you’ll stick around, or poke around in the archives and see what’s of interest, and continue to let us know what you think.

  8. I’m glad to hear that,

    it’s good to hear that you have many different kinds of people on your team (disabled and not) on your team. That’s good, but the only reason i raised this perspective to your ears is simply because….well the only reason people are asking these questions and are upset about it would probably because that’s what it sounds like when you read the material in your blogs.

    Your team defiantly sounds like you all are doing perfectly well with buffering the comments and I’m glad. Because you guys can change some serious lives, and that’s awesome. I just want you to know that in the process of doing this – there might be another element that could possibly happen. I totally support it actually, I’m not upset in the slightest about it. There could be someone who needs your help more then i do – who am i to judge your work as a team? I’m not, you can change the medical field with this.

    And because of that – I wish you luck. :)

  9. Pingback: Three Events in Edmonton on Disability and Eugenics « What Sorts of People

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