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Disability is $$$

ncordon's picture

CRISPR is often villainaized by disabled people and activists who say that disability does not determine one's quality of life. The standards we use to gage a person's quality of life comes from able-bodied criteria that is too generalized to apply to disabled lives. That being said, I think it is important to consider the quality of life for the people who raise a disabled child. It is expensive! Although disablity may not be inherently miserable for the person affected, it can bemiserable for the person who has to pay for their care– either emotionally or finantially. CRISPR is an opportunity to alleiviate the future finantial burden. Sure, there are other consequences; people argue that it futher stigmatizes diability, is a form of eugenics, and is only available to the wealthy. These are valid arguments against it, but I think it is important to think about the benefits. I don't know where I stand personally, but I don't know what I would do if I were in a poor finantial position, knew my shild would have an intellectual or physical disability, and someone told me I could remove the disability for an upfront payment. Eli Clare says it is important to think about how the high cost of diability reveals the lack of services the government provides– which is true– but, aknowledging the lack of services doesn't take away from the fact that it is still expensive. There needs to be policy reform, but in the meantime, while these costs are still high, CRISPR may offer a viable option. 


acwest's picture

I think "there needs to be policy reform, but in the meantime, while these costs are still high, CRISPR may offer a viable option" is very important and reminds me of our conversation about abortion and disability. In an ideal world, people would get the financial, healthcare, and community support to raise any child regardless of ability. However, in the current US system and culture, people (typically women) and families are left alone with no financial help, no healthcare and limited healthcare providers outside urban areas, and little support raising children with disabilities due to limited knowledge of disability culture and stigmatization. That being said, I hope and believe that healthcare changes will occur shortly due to coronavirus. There may be a form of socialized medicine and this may inspire more people to become doctors and nurses. I don't think there is a right answer or a single answer to any of these questions.