So it’s been a while since I’ve written. I can’t say precisely why, but
recently I’ve gotten inspiration back. I’m reading a great book by Fred Pelka, the
first global history of the Disability Rights Movement that is actually told by
people there. It is called What We Have Done: An Oral History of the
Disability Rights Movement. This book does a great job of two things:
teaching someone who is disabled more about their movement because, sadly, I am
not well informed, and secondly, backing it up with scholarly research.
However, it’s this book and recent conversations that have caused me to write
this blog.
There are several perceptions of
disability but one perception of disability that irritates the disability
community and me in particular. Fred Pelka has the medical model of disability.
Rather than using this technical term, I refer to it as the “need to fix what
is not broken.” Often in my life, I have encountered both persons with
disabilities, caregivers, and friends who follow one of two sides when it comes
to this issue. Either one believes that disability is a problem that we need to
fix or think it is an obstacle that we must overcome.
In my case, I was born with a
disability. Like I have stated before, there are other ways to become disabled.
Disabled to me is not important how one becomes disabled but how they approach
disability. Recently, in conversations with my elderly neighbors, they’ve asked
me the following question, “If there was a cure for your ‘disease’ would you
take it?” As politely as I could, I said to them, “No, I would not.” They, like
many others, had the same response to that question in which they looked
bewildered. How is it possible that if I could wipe my private area, I would
not take it? Simple. I believe I don’t need “fixing.” I am supposed to be the
way I am for a reason. Although I think that, society as I have noted in many
blogs, sees me as an outsider or outcast. I did not understand why society saw
me as an outsider until I read a powerful quote from What We Have Done:
An Oral History of the Disability Rights Movement. In the following section,
Pelka lays out the belief system that supports the idea that disability needs
to be fixed. By the end of it, he also brings to life why society, in general,
has such a hard time making a place for persons with disabilities. It is not
only because they d not understand the difference in terms of disability. It is
indeed more merely that they feel that disability is a problem that can be
eradicated and fixed.
“Here too, however, the ideal was that the person with the disability be cured
and again “made whole.” In this model, a failure to cure was not attributed to
the spiritual or moral state of the disabled person (at least not overtly) but
rather to a loss of medical science. Even so, the continued emphasis on cure
vs. pathology, according to Richard Scotch, “assumes an idealized notion of
‘normality’ against which disabled people are always being compared. ‘Abled-bondedness’
is seen as the acceptance criterion of normality. Further, as Kaplan notes,
“under this model, the problems that are associated with disability are deemed
to reside within the individual. In other words, if the individual is ‘cured,’
then these problems will not exist. Society has no underlying responsibility to
make a ‘pace’ for persons with disabilities since they live in an outsider role
waiting to cure.” -What We Have Done: An Oral History of the Disability
Rights Movements, page 9
Pelka’s statement reinforces the idea
that persons with disabilities are outsiders. To the “fixers” of society,
persons with disabilities should accommodate society and not expect to be
adopted into society. This idea is not only erroneous but also more prevalent
than some would like to believe. The following section of this blog may rub
some close to me the wrong way, but it needs to be addressed.
I do not often use personal stories
without permission. I try to stay as straight as possible. However, the
“fix-it” philosophy has been something I have encountered for most of my life.
My posture has not always been the greatest. In fact, over time (due to my
disability and laziness), it has gotten worse. For the part my laziness has
played in it, I admit that I can fix it somewhat. However, I have realized that
I am never going to sit up straight, and I am always going to end up leaning
over at some point in my day. Some around me say that this will make me
unemployable, and I should do things to correct this. To them, I have this to
say, I try to maintain my posture as much as possible, but are we suggesting
that we correct all of our flaws as humans? Just to fit into a pre-determined
societal standard? In that case, I don’t want to fit into society.
Another issue that I have is that
sometimes I cannot get to the restroom on time because people are not always
available to help me. I used to beat myself up over this issue. In the past
year, though, I’ve realized that certain things about my disability are not
going to change, such as not always having assistance in the bathroom and the
lobster-like hands that I have developed. You laugh, but literally, they look
like chumps. My physical differences may look unsightly to some. A large
majority, but they are a part of me. I would not change them for anything. If
anyone cannot accept someone with a physical disability, it reflects that person
and not demonstrates the person with the disability.
The above statement does not mean
that persons with disabilities should not carry themselves and possibly can but
simply that they should not be afraid to allow for their disability. If someone
is unwilling to accept someone for all of who they are, they are not worth it.
This includes society as a whole. If an employer does not want to hire me
because occasionally my posture lags or my hands look different, then I have
only one thing to say, you are missing out on a great friend because you are
narrow-minded. I am not the only brain you will be missing out on. I hope you
have a good day!
I hope this blog wasn’t too preachy.
Still, my main message is that if people with disabilities are ever going to
find a peaceful place, they must first accept themselves physically and
emotionally. They need to stop living for what society says they should be.
Footnote:
1.) Pelka, F. What We Have Done: An Oral History of the
Disability Rights Movement. 2012. University of Massachusetts Press.
