March 27, 2017 - 20:56
Disability rights advocates are one of the most vocal critics of the emergence of powerful gene editing technology, such as CRISPR-Cas9. The priority of disability rights advocates is to combat discrimination and prejudice, not search for ways to manipulate genes in ways that have a potential to eradicate specific disabilities. The readings for this week gave three interesting perspectives on genetic and reproductive technologies; all of who had personal experiences with disabilities. When I first learned about CRISPR-Cas9 in my advanced genetics class, I was completely in awe that humans are starting to have so much control on the creation and growth of life. As someone who is not disabled, I found the readings extremely helpful in understanding why someone would critique genome editing technology.
Erika Hayden’s article, “Tomorrow’s children”, brought in the perspective of a parent (Ethan Weiss) who has a child with a disability. I found this reading particularly interesting because Ethan Weiss is a physician-scientist; therefore he is well aware of the new genetic technology but is also a huge advocate for disability rights. In the end of the article Hayden stated, “At a minimum, they say, the investment in developing CRISPR should be matched by investments in innovations to help people who are already living with conditions that cause disability”. I completely agree with this statement, and understand how detrimental it will be for the disability community if their voice is not included in the development of these genome-editing technologies.
In Michael Berube’s chapter, “the Meaning of Life”, I was really drawn to the comment he included of Tom Shakespeare (page 183). I liked how Shakespeare acknowledged, “people are indeed disabled by society- but by their bodies too”. I find myself frustrated when people try to dance around the reality of disability and argue that it is society causing all the problems for people not the disability itself. I’m sorry if my comments come across as insensitive, but I think it is fair to say that many disabilities do come with a long list of health problems that can affect a person’s quality of life. I think it is important to continue research into genomic editing but not get too caught up with perfecting the human race. There needs to be a balance between focusing on the disability itself and how society can change as a whole to be inclusive and accessible to all.