I
want to pursue biomedical engineering in order to help other people. Despite being such a lofty and noble goal, it
gives me some pause. The medical model of disability guides medical
professionals and related scientists and engineers to improve the health of
those who are disabled. The medical model of disability views disability as
arising from medical conditions and as something to cure or, failing that, to
mitigate.[1]
That definition is quite dry and seems morally unproblematic upon cursory
glance. This model is more sinister than it initially appears. Through treating
disability as something to eliminate – as something that does not truly exist
in the perfect medical world – the medical field moves towards normalizing the
human body .
Thus,
with modern technology “we should strive to make everyone as perfect as
possible,” at least under this model of disability. Obviously technology is not
yet powerful enough to achieve that. It is, however, constantly evolving to the
point that treatments are becoming quite sophisticated. Currently, for example,
Sarepta Therapeutics is working on a drug to treat Duchenne Muscular Dystrophy,
a step towards curing it. As a person with Becker’s Muscular Dystrophy – which
is quite similar – I am supposedly
obligated to support such efforts. I want medicine to become more sophisticated
and to play a role in that development but a drug like that functions to bring
an individual closer to normalcy. The technology should be available for those
who wish to use it but not forced upon people. Cochlear implants are used to
treat deafness; for a large part of the implant’s history it has been forced
upon people with deafness, rather than from obtaining their consent.
Prosthetics as a whole faces this problem. People should be allowed their
individuality, which includes staying “disabled” if they choose that. Growing
up with Becker’s Muscular Dystrophy, for example, is a vital part of my
identity, not simply a disorder that causes me trouble. For that reason I would
refuse to cure myself of my condition, even if I may do research that leads to
it. As I previously said, I care more about the option existing but not forcing
people to conform.
I
chose to take the corticosteroid Deflazacort in order to manage the pain I was
facing at the time. Though I did conform to the medical model perspective, I
was able to keep my individuality. Despite having to rely on a drug, I felt
that I ultimately benefited because I could overcome institutional barriers
facing me. Thus I was able to continue attending school, despite the many
challenges I faced then.
Akihito
Kanbara, a character from the show Kyoukai
no Kanata[2],
symbolizes at least to me the struggle between keeping one’s identity and societal
standards. (Yes, pretty much everything I have mentioned goes back to that
time-honored theme.) Akihito is half-demon, half-human. He is considered
extremely dangerous because his demonic side: threatens his human side, is
immensely powerful and threatens others, and leads to isolation on account of
his perceived dangerousness. At multiple times throughout the show his demonic
half takes control leading to changes in appearance; personality; and
dangerousness, forcing his friends to restrain him. At some point he nearly savagely
murdered one of his friends by accident. Akihito also claims that he has no
friends, hinting at a sense of isolation. (Though we know this statement is not
quite true it certainly still suggests an insecurity.) The viewer also learns in a flashback that
Akihito was not injured when a car ran into him, prompting fear from everyone
in the train car. Despite his half-demonic nature apparently being the center
of his misery, he stubbornly holds onto his mixed identity. A separate
character, Mirai Kuriyama, manages to remove his demonic side. Instead of being
grateful, Akihito resentfully remarks that he never asked for a normal life, to
be just like everyone else. At the end of the show he reclaims his half-demonic
identity.
A
way out of the “negative” side (disabled, cursed, etc) of Akihito’s identity is
presented. The societally expected response would be to strip that side and
become wholly “positive.” Instead, he embraced both aspects of himself and
refused to conform to normality. I view disability the same way: accepting the
good with the bad, resulting in balance. Such a message is obviously Taoist,
which leads of course to a discussion on yin and yang. (See this image: http://en.wikipedia.org/wiki/Taoism#mediaviewer/File:Yin_and_Yang.svg.)
The most important part of the image is the depiction of good having some evil
and evil having some good. A disability (akin to the “cursed” state of Akihito)
is conventionally considered wholly evil in modern medicine. A Taoist
interpretation is that a disability has good to it, comprising an essential
part of one’s being, though it is mainly considered bad due to the associated
societal barriers. That is why I would not seek a cure for my condition, even
if it may cause me trouble. No matter what bad there may be in Becker’s
Muscular Dystrophy, I value what it brings me.
[1]
Nikora, Linda Waimari; Karapu, Rolinda; Hickey,
Huhana; Te Awekotuku, Ngahuia (2004). "Disabled
Maori and Disability Support Options". Maori & Psychology
Research Unit, University of Waikato. Retrieved September 14, 2014.
[2] Translates to "Beyond the boundary"
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