Bio-Ethics stimulates discussion on disabled

Sara Goering. photo courtesy of The University of Washington.

Friday, Jan. 27, the latest installment of the Philosophy Department’s Medicine in Action series stimulated frank questions from the audience on the quality of life paradox in lives of people with disabilities. The speaker, Sara Goering, associate professor of philosophy at the University of Washington spoke on “Disability and Quality of Life Judgements: Exploring the Disability Paradox.”

Goering was invited to speak at SIUE by Alison Reiheld, , assistant professor of philosophy, who received a EUE grant for the series.

“Dr. Goering has worked in medical ethics for a very long time. One of the first papers I read by her actually applied questions about cosmetic plastic surgery and ethical issues about that to matters of genetic engineering and the choices you might make about your children based on possibilities of gene manipulation,” said Reiheld. “Since then, she written a number of interesting articles, recently working on disability issue, including a published article on the subject of this talk.”

“A lot of people are curious about how I got into this area, so I just want to say a little briefly to give a framework for this talk,” said Goering. “I started grad school at the same time as the human genome project was funded and there was that 5% LC funding for ethical, legal, and social issues having to do with genetic research and genomic research. And I was part of that, even though I was just starting grad school. I have to say that I went into it very naively, open-eyed, happy about what we might be able to do to help people. Of course, if you know anything about the history, we haven’t experienced the amazing great advances that we thought we might.”

“It was very strange for me to hear from some quarters–in particular I was struck by discussions from the deaf community–about why they were seriously against some of the scientific experiments that were going on and also some of the projected technologies that were supposed to come out of this,” said Goering. “Like most non-disabled people, when I read those things I was a little surprised and, I wouldn’t say put off exactly, but shocked a little bit that there were people who had such dramatically worldview or view about what was a valuable way to be in the world. So, I started reading more. I wanted to know how this was possible. I read more and more books on it. I started to realize that there was something there that deserved more explanation in the philosophical literature and in bioethics.”

Goering explained the disability paradox as the vast difference between the way that people with disabilities view their quality of life and non-disabled people believe how their lives would be if they were disabled.

“Most non-disabled people, including bio-ethicists and healthcare professionals–nurses, physicians, the whole gamut–tend to think that life with a disability would be terrible. It would lower their quality of life very significantly. It would be all encompassing. It would take over most things about the way they go about living their lives, that it wouldn’t be something that would be easy to adapt to in any way. They believe that it a good thing to do whatever is possible to avoid it or to cure it once it comes, to get rid of it and return someone to their non-disabled state if it’s at all possible. Sometimes, they even believe that living in a  particular condition is so bad that it makes life not worth living anymore. It’s so bad that if they were put in that position that they would rather be dead than live in that condition.

“In 1994, Oregon did a phone survey of people living in their state because they were looking at ways they could readjust their Medicaid and Medicare schemas so that basically, they could do upfront rationing so they would make better use of their federal dollars for Medicare. When they do this, the offer people a lot of forced choice: this or that, which is better, this or that, which is better. And they do ratings on these things. The fallout of this is that the majority of people in Oregon would rather be dead than in a wheelchair. But, the majority of people who end up needing to be in a wheelchair have not killed themselves. So, if we just led with this kind of study to figure out something about the value of living with a particular condition, we would end up with some pretty horrific results, if we just ran policies just from getting that kind of input.

“So, that’s the one side. Most non-disabled people have this kind of view–disability is really terrible and it can make your life not worth living but even above that level, it will drastically reduce the quality of your life. And yet, on the other side, many disabled people report a quality of life that is almost exactly the same as the average quality of life that’s reported by non-disabled people. This is what the literature calls the disability quality of life paradox.”

Goering went on to flesh out the paradox. When she finished her presentation, the audience engaged her in a question and answer session that lasted for nearly an hour. The questions covered issues from the disability paradox, organ transplantation, and genetic screenings of fetuses.

The Medicine in Action series will continue on March 16 with Lucia Wocial from Indiana University speaking about Moral Distress, and will conclude on  with Holly Fernandez Lynch from Harvard University speaking about Conscientious Objection in Medicine.

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