Shame, Shame, Shame

As I've discussed earlier on this blog, I am conducting a study on music scholars and students with invisible, chronic illnesses. Please do not badger me with comments as to why I have not updated my blog. I am a very busy and/or infirm person and blogging is not, at the moment, high on my agenda. When I am not facing the challenges of my auto-immune diseases, I am functioning as a graduate student. However, I would like to occasionally blog about my study and what I'm thinking as I prepare for the AMS/SMT panel.

I have noticed, in my initial foray into disability studies, that there are two polarized viewpoints on the subject. There are those who want disability studies to be politicized and to enable those who are differently-abled to "come out" and be accommodated and supported for the unique contributions they can lend to academia. This viewpoint originated, I believe, because it is well-known that many people with disabilities have diseases or challenges that are chronic, serious and lifelong. Those with auto-immune diseases with no cure cannot help that they are often bedridden; those in wheelchairs because of diseases that attack their nervous system cannot help their inability to walk. This side of the argument views disability as culturally constructed, and challenges others to overcome their preconceived disrespect and prejudice against the disabled.

On the other side, there are those who want to keep their disabilities a secret, often because their conditions are considered shameful. For example: Mental illness, by and large, is still very marginalized in the United States. Also, there are various disabilities that can be corrected or at least drastically improved through scientific improvements. There was a thread on the American Musicological Society discussion list that presented this side of the argument, which argues against disability as a negative that must be corrected in order for its sufferers to fully function as academics.

Both viewpoints are valid and offer important insight into the predicament of the disabled. We did not ask to be this way, and with certain accommodations we can function as academics. Without these accommodations, many of us find even the act of writing papers or studying for an example to be insurmountable challenges. However, we do not want to be told we cannot do something because of our disability. To say we cannot study or cannot read or think because of a physical or mental ailment is psychologically destructive and marginalizing. It seems to be that both viewpoints are important in moderation. To an extent, disability is a cultural construct, because it was our culture that decided disability = BAD, IRREGULAR, UNACCEPTABLE, UNINTELLIGENT, etc. However, we still need certain accommodations and levels of tolerance of our challenges, and recognition of the setbacks we will therefore face. This does not mean we are not good enough to be academics, or even that we are want to leave our disabilities behind and try to live life as "normal," just that we will need help in our endeavors for these unavoidable challenges.

MOREOVER, the scholars I have talked to overwhelmingly experience some level of shameful feelings because of their conditions. They feel marginalized by their institutions and are, to an extent, embarrassed to ask for what they perceive as "special treatment." This is a huge problem, and is just unacceptable. No one should feel shame for being born with both above-average intelligence, a love for music, a high curiosity and desire for knowledge, and also moderate-to-severe illnesses. We are a viable part of the academic community, and without our voices, we and other scholars who could benefit from our research will suffer.


Miss Mapp said…
A brilliant and thought provoking post. Thank you. Seems to me you are/ are going to be a force to be reckoned with. I hope so. Looks like you're an organ scholar - Iv'e been known to be wrong!

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