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Friday, January 31, 2014

Syracuse University: Disability as Ways of Knowing,Part III

Last Fall Stephen Kuusisto and invited Adrienne Asch to speak at Syracuse University.  Many of Asch's friends knew she was terminally ill. We wanted to honor Asch for her many and important contributions to bioethics and disabilities scholarship. Sadly, Asch was unable to talk about her life and work at Syracuse. She was too ill to travel and died in November.  I will remember Asch for her early and ground breaking work on prenatal testing and selective abortion. With her death, bioethics lost an important scholar.

As part of Ach's proposed visit Kuusisto and I had suggested we have a round table discussion. The three of us would read from our respective work to be followed by a Charlie Rose style open discussion. It was with heavy hearts that Kuusisto, myself and others decided we should move forward with our plan. Hence on October 29 Kuusisto and I read from our work in honor of Asch.  The event was titled Disability as Ways of Knowing, Part III.

Below is a video of the one hour event. I hesitate to post an hour long video but am doing so because many people have been suggesting I post videos of myself speaking. The people have spoken and below is enough Bad Cripple to last an hour though it may seem like a lifetime.


10 comments:

Middle Child said...

Am going to watch this on Sunday - looking forward to it.

Middle Child said...

I had to stop watching - close to the end now...this is such a good tool...I am sending this hell west and crooked - you two explain the Eugenics issues so well...Don was dead set against legalising euthanasia - and there were issues with people we knew who thought he would be in favour...as if? Thank you

Middle Child said...

Have finished - ...thank you - I hope disability groups pick it up but sadly down under ther seem to have lost their way -once they were out there - radical now they are part of the problem...

william Peace said...

MiddleChild, Thanks for the kind words. I has a great time that night. Kuusisto is a great poet and thinker.

Becs said...

I'm glad I watched this. This clarified several issues for me.

As an aside, I very much enjoyed watching the interpreter interpret the poem. Her movements were fluid and beautiful and strong. They brought an extra dimension to those words.

Thank you for sharing this.

william Peace said...

Becs, Been a while since you left a comment. I hope you are well. I too enjoyed watching the interpreters. Sign is a gorgeous language, fluid and graceful. Steve's poetry is brilliant.

Becky Andrews said...

Thank you for your posts. They always make me think and reflect and move forward in action. Wishing you the very best in your endeavors - Thank you for your voice.

william Peace said...

Becky read your post and gave my beloved Kate much love. Dogs are empathy factories. Hard to be sad with a lab by your side.

Andrew Sydlik said...

Great talk--I'm glad that you are discussing these issues are. Unfortunately, I know some people with disabilities who do feel strongly that they should have a right to die, and that if their disabilities got worse, or they acquired new ones, they would rather die than live like that. And I agree that before we can even begin to answer the question of "right to die" laws, we need to get over this unreasonable fear of pain and the stigma of disability. I think Cheryl Marie Wade said it best when she said that we need to experience the right to live with dignity before we can die with dignity.

However, I was really struck when you were talking about pain and suffering (around 52mins in) as being things that are not "good" but are not "wrong" either. I guess I'm wondering how this fits in with the ethical questions surrounding inequality, justice, meeting people's needs, etc. Doesn't our desire to counter discrimination, meet people's needs, and fulfill rights, dignity, etc., have to do with alleviating suffering? Is this a different kind of suffering than that caused by medical conditions? Or is that social justice needs to emphasize values other than happiness/non-suffering? I'm not asking with any clear answers in mind, just curious what your thoughts may be. Thanks.

william Peace said...

Andrew, A small minority of people with a disability do indeed support assisted suicide. However every major disability rights group I am aware of opposes assisted suicide. The same can be said about disability studies scholars--the vast majority oppose assisted suicide. What gets me is no one asks stye hard questions: why do people want to die. It is not for pain control. Oregon ash Washington prove that. People die because they lose fearing control over their life and losing autonomy. To me this is a social problem. How can we alleviate such concerns and put social programs in place where even the sickest among us feel their life has value. Not sure I answered your question.