I Don’t Need Fixin'

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.