Gene Editing and Disability

"'At our peril, we are right now trying to decide what ways of being in the world ought to be eliminated'" (Rosemarie Garland-Thomson in "Tommorrow's Children" by Erika Check Hayden)

This quote in "Tomorrow's children: What would genome editing really mean for future generations?" stood out to me because it summarizes to central debate in conversations about CRISPR/gene editing and disability: where does disability fall in relation to a 'normal' human experience, what is the distinction between nondisabled and disabled (or even 'severely disabled'), does editing out disability 'improve' lives, and if so, is it our responsiblity to do so? As discussed in each of the articles, many arguments for gene editing to prevent disability rest on the assumption that disability is bad/undesireable. And while it certainly is true that some people with disabilities may readily embrace any opportunity to eliminate their disability or prevent their future children from inheriting it - especially if their disability comes with a significant financial burden, and when they see it more as a condition they have rather than an integral part of who they are - many disabled people have no desire to separate their disability from themselves, and may not even know who this 'self' would be if it couldn't include their disability. It is therefore extremely harmful when people like the Harvard geneticist MacArthur say things like "Prediction: my grandchildren will be embryo-screened, germline-edited. Won't 'change what it means to be human.' It'll be like vaccination" ("Tomorrow Children"). By comparing gene-editing to eliminate disabilities to vaccinations to prevent deadly diseases, MacArthur is framing disablity as something harmful and disposable, rather than a nuanced aspect of one's identity, as many disabled people view it. And given that differences and disabilities are indisputably part of the human experience, the idea that such gene-editing wouldn't 'change what it means to be human' is a statement that doesn't make any sense to me. The human experience is by definition something individual, unpredictable, and imperfect: we all come from different backgrounds, have different likes and dislikes, different strengths and weaknesses, and so on. And while framing disability outside this 'normal' variation of humankind is in some ways accurate because of how our society makes certain differences and impairments disabling and isolating, this is the problem we should figure out how to solve, not just how to eliminate the diversity of identity and experience of disability.