A World Without Disabilities?

“Don’t you want to get rid of your disability?”

This is a common question that’s been asked to people with disabilities from strangers, friends, acquaintances and even sometimes their own family members. With the emergence of new biotechnology such as the CRISPR Cas 9, the possibility of curing disabilities is now more likely than ever; however, where does that leave those with a disability?

The new genetic technology is quickly becoming a reality, and we need more efforts put in to weave the lines of Disability Studies with Bioethics that instigate the issues with the rise of a new form of eugenics stemming from the “curing” disabilities concept of CRISPR. The “cure” vs “kill” trope of disabilities is apparent in discussing the manipulation of the human gene that could possibly bedridden the future generation of any type of disabilities, both minor and major. But where is the representation of people with disabilities in this discussion of possibly ending their germ line in the future?

CRISPR Cas 9 is a genome editing tool that will be able to correct mutations that often lead to cystic fibrosis and sickle cell anemia. The biotech will also be able to edit HIV out of a person’s genome or lower the risk of cancer and heart disease that are more prevalent today. The core of the CRISPR debate, however, is not of the technological challenge but rather the ethical one.

The ethical challenge being that gene editing can enable a new rise in eugenics, the eugenics of personal choice in which humans guide their own evolution individually. However, with the rise of the new technology, there has not been much discussion that included the voices of the people with disabilities. The issue is not with the technology but rather the “curing” concept that ignores the key group of the people that will be affected and how they are being materialized as less than human. People with disabilities have constantly been excluded from the rest of society, and with the new emergence of gene editing, it will further push them into exclusion.

Taking a closer look at the deaf community, for instance, rapid flourishing of gene editing could ultimately diminish not only the community itself but also the culture and language that the deaf community have built for so many years. In the debate of morality, this type of input from the disability community is nearly not talked about enough nor is their opinion being considered critically. If gene editing continues to advance, people of the deaf community now will lose their sense of belonging in a community that has been present for so years. There has been disputes from members of the deaf community arguing that gene editing is a form of cultural genocide for people that are deaf (Conti). With the CRISPR Cas 9 rapidly developing, the likelihood of the deaf community diminishing is very high as a simple edit in the gene could “cure” them of the disability.

Throughout history, people with disabilities have unfortunately been treated as objects of misfortune and pity as well as a burden to society. The misconception has manipulated the minds of society to the point where they automatically associate disability with tragedy. This ultimately leads to society’s mission in trying to find a “cure,” hence the development of gene editing, rather than accepting them. Though CRISPR Cas 9 has open doors for medicine in which the genome of a human being can be altered to prevent the offspring from having a life-threatening disability, the biotechnology is not considering how this might affect the people with disabilities now.

Like what Cokley said in her article “Don’t Edit Me Out,” “Where is the line drawn between what society perceives to be a horrible genetic mutation and someone’s culture?” In the deaf community, the art of communicating through sign language is part of their culture; however, if gene editing lowers the rate of people that are deaf, how will this culture manage to sustain itself in the future?

The very idea of “curing” disability is a fundamental component in the discrimination of people with disabilities because the “curing ideal” resides in conformity and normalcy in regard to creating the model of the “ideal” human body (Fuzesi). Disabled people have relentlessly been looked upon as less than human. Gene editing is based off of the concept of attempting to “normalize” them, hoping to fix their “frailty.” This idea of needing to “fix” or “cure” the disability community automatically assumes a negative relationship between people and their associated disability (Reindal). It also perpetuates the misconception that disability is something to be ashamed of because of society’s perception of the ideal “normal”.

With the advancement of CRISPR Cas 9, however, there is a distinction between editing cells as a form of treatment versus the germline modification which excises disabilities from all future modes of biological reproduction. It is clear that the gene editing biotech will be able to save countless lives; however, where is the line drawn between what is moral and what is not? Yes, gene editing has its benefits, but there needs to be more discussion that includes the voices of the disability community, incorporating their thoughts and views of how they feel of being “fixed” as this technology will theoretically impact a huge part of their life in the future. We need a new field of studies that incorporates Disability Studies and bioethics that instigates a solution to the issue of what is considered necessary and ethical and what is discriminative of the disability community.

Though the new biotechnology may seem appeasing to the eye; however, like with all biotech, there are always costs that are associated: the cost being in this case the creation of a new eugenics of personal choice which will become the new modern eugenics in society. The bottom line is that the interrelation between Disability Studies and bioethics is needed more than ever to establish these lines of uncertainty of what is considered moral versus what is considered as discernment against the disability community.

Works Cited

Cokley, Rebecca. “Please Don’t Edit Me Out.” The Washington Post, WP Company, 10 Aug. 2017, www.washingtonpost.com/opinions/if-we-start-editing-genes-people-like-me-might-not-exist/2017/08/10/e9adf206-7d27-11e7-a669-b400c5c7e1cc_story.html.

Fuzesi, Peter. “The Human Enhancement Debate and Disability: New Bodies For a Better Life.” Disability & Society, vol. 29, no. 10, 2014, doi:10.1080/09687599.2014.985063.

Reindal, S. M. “Disability, Gene Therapy and Eugenics — a Challenge to John Harris.” Journal of Medical Ethics, vol. 26, no. 2, 2000, pp. 89–94., doi:10.1136/jme.26.2.89.

Conti, Adam. “Drawing the Line: Disability, Genetic Intervention and Bioethics.” Laws, vol. 6, no. 3, 2017, p. 9., doi:10.3390/laws6030009.