I left last Tuesday’s discussion ready to more deeply discuss disability/ability as it relates to eugenics. While all of our conversations are respectful, this topic began to ignite some debate towards the end of class. A contentious point was how modern medicine does or does not factor into the disability and eugenics discussion. Should science continue to try to remove genetic abnormalities and diseases? Is it ethical to purposefully engineer perfect babies? Should a line be drawn, and if yes, where? Some of my classmates wondered if economic factors should also be weighed: What should happen if a family is not economically established enough to raise a child with a disability? Is it more ethical to terminate a pregnancy in that case?
After considering my classmates comments for a week, I still feel part of the issue is unresolved for me. On the one hand, I am awed and overwhelmed by what science is and will be capable of. I think it is great that some difficult diseases, such as polio, have been virtually eradicated and that other, simpler sicknesses are now treatable. I find it important that we continue to try to make this medicine cheaply and safely so that populations still in need of treatment have greater access.
On the other hand, I worry about the mindset scientific advancement could foster, namely that those who do have a disability need to be “fixed,” that there is something “wrong” with them. Of course, some disabilities are limiting and prevent those with the disability from being able to do everything they want to do. But does that mean that they do no lead full lives? Does not disability challenge people to look at the world differently? Cannot a person with a disability accomplish wonderful things?
While there is obviously a physical component to disability, the social construction seems to be more limiting. Despite being deaf, Beethoven composed gorgeous music. Although she is legally blind, Flo Fox takes wonderful photographs of New York City. Perhaps their lives could have been easier if they did not have their respective disabilities, but even with their disabilities they imparted beauty and inspiration.
I fear that science will focus too much on “perfection” and not enough on being “human.” I hate for anyone to suffer, and I would support cures to fatal and painful diseases. Yet, I think it is important to remember that humans are not, and should not, be perfect, and beautiful things could result from diversity.
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Christine, I agree with you that in the search for perfection humans might not know when it is time to quit, leading to dire consequences. You speak eloquently about how each person, disability or not, has the ability to lead a happy life and accomplish things. Sometimes I look at my aunt, who has Down Syndrome, or my uncle, who is severely and profoundly retarded, suffers from epilepsy, acute psychosis, and Dandy-Walker Syndrome among many other things, and wonder if they are leading happy lives (they are unable to verbalize these thoughts so I cannot ask them). I see how difficult life is for my aunt, uncle, grandparents, and parents and I’m not sure that it is the ideal life I would wish upon myself, or more importantly, my child. For these reasons, I think that I would undergo at least some sort of genetic counseling before I start a family but I think that it is okay for everyone to decide what is best for them personally and is in line with their values.
Your comment made me think about some of the clients I worked with at my previous job, I worked with several individuals who were nonverbal and had severe disabilities. They could all express themselves in some form, but it was difficult and sometimes frustrating. But they seemed fairly happy, and had families who deeply loved them and did their best to provide opportunities and support.. From my perspective it may seem they have incredibly difficult lives, who am I to judge whether or not their life is worth living? I understand what you’re saying about not knowing if someone with a disability is really happy, and wanting the best life possible for them (and their families; having a family member with a severe disability is very stressful), but I don’t think we’re qualified to make those decisions.
In the end, I think we just have to keep working on scientific research to help make people’s lives more healthy and happy, but to keep in mind that people with disabilities are valuable and important.