The AWWW Moment

Today is America’s birthday. I live in the best country in the world. Whether you are liberal or conservative, Republican or Democrat, we all have opportunities in this country. However, just because we live in the greatest country in the world, it doesn’t mean that people don’t often surprise me. I do have all the opportunity in the world. My disability anywhere else would be 10 times more magnified then it is. I am grateful that I was born where I was, but sometimes I wonder about people. As most of you know I am 27 years old and I have a master degree in education, but that piece of paper doesn’t mean much to my social disability. Yesterday, I was out in Erie at a movie, and I got the following reaction from a lady in her mid to late 40’s. She saw me and my caregiver and her immediate response was awwww. To this moment I still don’t know what that meant, but it made me think.. Just because I have a physical disability doesn’t mean that I have a mental one, but apparently you cannot change everyone. As I celebrate this 4^th of July weekend, I am grateful for what America has become, but I still know that America has a long way to go when it comes to treating disabled citizens like everyone else, because apparently I am 27 and look like I have a mental disability. I didn’t know that going to a movie with a caregiver automatically made you have a mental disability. I am not saying that having a mental disability is a bad thing, because I know people with them who are great people. They just struggle in certain areas. What I am saying is that I hate being grouped in one large category with certain stereotypes, but there are certain things about the world and America that need to change. The question is: Will it change in my lifetime? I am hopeful that the answer is yes, but I am not expecting it to.

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 [jh1]

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.

 

The Difficult Takes Time, the Impossible Just Takes Longer

"Dreams are never destroyed by circumstance. They live or die in your heart. My dreams come true not in spite of my circumstance but because of it...For those of us in this life who are afraid to change, life will change for us. Then it is always a more painful experience...Dreams new dreams or dream old dreams in new ways. Think new thoughts or think old thoughts in new ways...The miracles of our lives do not come about by grand events, but by the little things we have chosen to do...The biggest problems come about because I avoid the little things too long...The difficult takes time; the impossible just takes a little longer" -Art Berg.

I read this quote in a book that I’m reading by Chad Hymas. This is a quote from his mentor. 

Yet again, nothing surprises me. Being disabled you are given a unique set of playing cards. Sometimes a few of those playing cards go missing and you find them later. Then you wonder to yourself, where is that when I needed it? This awful card analogy is the best way I can figure to start this blog. Recently, I’ve had a couple of issues related to my disability. Nothing quite like the one I mentioned in the “It’s All About How You Handle It...” where I went to the bathroom on myself, but a rather frustrating issue none-the-less. 

When you are as physically disabled as I am you are pretty much reliant on others for a majority of your physical needs. At this point, I made it clear throughout some of my other blogs. What I have not discussed is the various aide care philosophies and systems that are available. This blog will not go into detail about the difference between the aide care model, rather it will discuss aide care from person to person. I am with an agency who for the purposes of this blog will be known as “Help At Home.” I have not always been with this agency. In fact, I have not always lived on my own until I came back to Grad School my primary physical care providers were my parents. I believe this is the case for a lot of disabled individuals. However, I do not have some giant statistic number to use. I went to Edinboro during the school year while getting my Undergrad and came home every summer. I lived in a dorm-like every other college student I did my share of fun having and my share of studying. The only difference between my dorm and everyone else’s was the personal care was a part of the package. Due to this unique set up, I believe my parents and I were always skeptical about how I was going to live on my own. I really didn’t have any answers to the questions but I knew that it was an eventual goal of mine. My parents were probably scared out of their wits but they would never tell me that until later.

So how long ago for my fully dependent care system to a functioning disabled individual who is independent, managing my life, and making the mistakes other typical 26-year-olds. Well, let me explain I am not often a logical thinker and I will fully admit that. Sometimes it has driven my parents insane. The idea of me living on my own was no different. It was another summer in 2010 when I was doing the same thing over again, driving myself slowly crazy along with making my parents, especially my dad, want to pull the little hair he had left out. One day I finally decided, screw it! I’m going to go back to school. My parents said, “Well, that’s great but how are you going to do it?” I was used to them finding solutions for me. So needless to say this was a nice kick in the ass. After about six weeks of me hoping they would do what they usually had done, I figured out this was going to be different. 

Now let me make a note about what I’ve said above. I’m not some spoiled rich kid who expects his parents to do everything. I honestly believe in the depths of my heart that a large part of my parents doing everything has a lot to do with my disability. Either my perception is right or wrong, I believe parents with disabled children in some cases want to overprotect them. Not that this is a wrong desire, but it stunts the growth of the individual. I do not fault my mom or dad. They did not know what they were doing just as I would not know what I was doing if I had a disabled child. They did the best they could and now it was time for me to work on myself. 

I found a program, applied, and got in! I was not under any pressure that I could not do the work of Grad School. The biggest hurdle I thought I would have would be the personal care. My parents had two conditions. Either I live at home and go to the University of Maryland and go back to Edinboro or go back to Edinboro and live at the dorms. Well, I love mom’s cooking but the basement wasn’t for me.  So I said I would go back to Edinboro. I don’t think my parents knew at the time but I always had it at the back of my mind that I was going to live on my own by the end of the semester. Towards the middle of the semester is when my parents and I when I seriously began to talk about it. My mom, being the wonderful mom that she is, took great chunks of her life and helped me search for an apartment. Eventually, I found one! Not the best, but not the worst. So now I had a place to live and a school to go to. The greatest struggle of all was not addressed though. 

For those who do not know. It is not easy for someone to get aide care in whichever state they live in. There are waiting lists about 1,000 miles long. It doesn’t make sense to the outside, but that is bureaucracy for you. This is not an advantageous system for someone moving from state to state. I encountered a problem. I would qualify for aide care but it would take about six months for the state to pick up the bill. My case is unique because I was able to have parents that were able to help me pay workers that I had known from the Edinboro dorm community to assist me with aide care. There are days when I’m sure they don’t know it but I am eternally grateful for them for help during those first six months. Without them, I don’t know where I would be.

Once the system kicked in that is where the difference between idealism and reality became apparent. As a parent, I can imagine that one would want their kids to be taken care of to the fullest whenever possible. This is no different for my parents. They to this day freak out when I tell them that an aide showed up late or called off at the last minute. Unfortunately, this is the reality of life when you are disabled and trying to be independent. It is not always 100% squeaky clean but it is do-able. I think a lot of disabled people are hesitant to try living on their own because we are taught as a society to fear the unknown. Let me put it another way.

When you are completely dependent on others for such simple things as eating, using the restroom, or removing the giant snot booger from your nose it becomes tedious to have to wait for someone to come help you. Therefore, most of us, I think in my heart, would rather take the safe situation than the risk of being independent. This may be a controversial statement but I fully stand behind it. Yes, living independently has its own risks. I’ve gone many nights without someone here. Five, to be exact. This number will probably freak my parents out. However, I know many people in my situation who do not have night care because the system does not pay for it. Ideally, we should allegate all the funds in the world that are needed to pay for aide care but living in an ideal world can really blind you to reality. There are ways around hurdles of living independently but in order for the disabled community to become more independent, they must first be creative and have the courage to think independently.

This blog came about because of periods of time over the last week and a half where aides have not shown up. Even my able-bodied friend who is sitting here helping me write this and myself are floored by this but it is the reality of my “Gimpy Life." To steal the title of an awesome web series you should all check out starring Teal Sherer. (http://www.tealsherer.com/Welcome.html). There are days where I scramble for coverage and there are guardian angles that come to the rescue (even when I don’t want them too)! Some days are like hell but hey at least it’s not boring. Parents who read this may be taken aback and this may entice you to be more overprotective but we are just like everyone else. We cannot grow until we fail because it is the failure that the greatest growth occurs. If we want to be like everyone else we must learn like everyone else.