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Discussion post for 11/10

Jude Chelico's picture

While reading the article "should you edit your children's genes?", I was constantly plagued by the meaning and consequence of 'serious disability' as a distinction. So far in class, we have talked mostly about common disabilities with ubiquitously understood, clearly defined accomodations. In fact, we have observed the development of robust cultures in the blind and Deaf communities. I'm more confident now than ever that impairments such as blindness or deafness do not correspond to a reduction in quality of life, and can in fact be the locus of development for a person's identity, culture, and home. However, by focusing on the positive and constructive development that comes with disability as a counterpoint to ableism, we have largely ignored the troubling implications of this framework when considering more severe disabilities. First of all, what does it even mean for a disability to be severe? Does it mean that it has a net negative impact on the life of the disabled individual? To frame the question more clearly: can every challenge that comes with disability be alleviated through accomodation? Throughout the article, I kept returning to the idea of Huntington's disease. I don't think that anyone would disagree that an individual who desired to alter their genetics to avoid Huntington's disease should be denied that choice, should it be available to them. But we would also shy away from forcing this treatment on them. I can't seem to rid myself of the argument that abortion on the basis of disability is similar to abortion on any other basis. Of course, I personally think that it's ridiculous to conflate eugenics and choice in that way. But how do I justify that? When Harriet McBryde-Johnson argued that our decisions are made in the world of laws and inequities, was she not also arguing that parents face an objective detriment when caring for a disabled child due to our lack of accomodations? And yet, at this point, the answer feels obvious. It is far easier, simpler, and more equitable to provide accomodations for disability than it is to simply edit them out. This is especially true as the side effects of gene editing can vary so wildly and unpredictably. If someone wants to edit the gene for Huntington's disease out of their genetic makeup, that's okay. It's also okay not to do so. What isn't okay is forcing the erasure of a thriving culture through an unjustly medical view of disability.