I am very nearsighted. Without glasses, I cannot drive safely, cannot read a blackboard even from the front row, and struggle with recognizing faces across a gym. In a world without glasses, I would be severely handicapped in all of these ordinary activities. I would probably have struggled to learn to read and write, which would impact my ability to access an education. This would manifest as a learning disability, perhaps even an intellectual delay.
What options would I have? I could find occupations which do not require good vision, I could live in an area well-served by public transportation, and I would probably lean heavily on family, friends and strangers to assist me in day-to-day activities. Many would think that I am a burden on society, since I require so much help, and yet can only perform low-level tasks. My family would probably advocate for me to be included, to be provided accommodations which would enable me to participate more fully, and for me to be appreciated for my strengths, not judged on the basis of my eyesight. And in a world without glasses, they would be right to do so!
Instead, what choices do I have in today's actual world? With glasses, I can participate in nearly all activities. With contact lenses, there is a vanishingly small number of activities where I would be limited. If I truly need full vision, I can shell out the big bucks for Lazik treatment. Or, I can choose to take my glasses off and use my extra-short focal length to look at things closely. It is all about having choices.
In the real world of disability we see a similar tension between seeking treatment and acceptance. Between trying to compensate for the disability and become "typical" and trying to change society to be more accepting of differences. There is a lot of fear that investing in research into treatment would undermine the struggle for acceptance. I think this is misguided. Research into treatment is all about giving people with disabilities the choices to control their own destiny. As a nearsighted person, I can decide what strategy makes the most sense for me. Many mildly nearsighted people choose to forgo glasses -- that is a legitimate choice! Even with my low level of vision, I usually prefer the comfort of going without glasses when I am swimming. I have other friends who invest in corrective goggles. Some deaf people are delighted to use cochlear implants, others prefer building up deaf culture to trying to fit in with hearing culture, and still others use hearing aids, which can be turned on or off depending on situation. It is all about choice!
With any disability for which there is no universally accepted treatment, a civil society will seek to make accommodations for affected individuals. A civil society will also research technologies which will give disabled individuals more options. It is not either/or, but and/also.
I love this line "Research into treatment is all about giving people with disabilities the choices to control their own destiny."
ReplyDeleteThis is fantastic, because the key is that individuals can control their own life, and not have someone control it for them.
Thank you! I think much of the resistance to "cures" in the disability community is due to the external perspective which is informing the research. As people with disabilities become more accepted and included, their perspective increasingly informs the research instead. Hence, an "external" perspective on T21 produces earlier and more accurate prenatal testing, while an "internal" perspective focuses on improving quality of life. As individuals make their choices, we will see which of the new treatments win out. As you say, "having the individuals control their own life, not having someone control it for them" -- if PWD lost their autonomy and had treatments imposed on them, that would certainly be a big step backwards!!!! Of course, when talking about infants, the parents are the ones who make the choices, but that is true in any case.
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