Friday, June 28, 2013

The Elephant in the Room

Okay, so it’s been a few days. I’ve been busy, and I finally submitted the first round screenplay to the NYC Midnight Screenwriting Challenge along with promoting my friend’s show “My Gimpy Life.” Teal and her team are interviewing five candidates this week to fulfill the position of Social Media Coordinator, hopefully. Good luck to my friend Jessica Rose who has an interview today with MGL.

       Over the last couple of days, during my hiatus from blogging, a significant issue has arisen in my life, which has inspired me to write this blog. I have had a couple of hiccups with my aide care. When these issues first occurred, I wanted to blog, but I didn’t because I would have come across as bitter and angry if I had. Now I can blog about it because I am removed from the situation. I am not upset and angry but just disappointed in my generation and their dealings with others. This blog has not only addressed disability issues, but it will handle a generational issue as well.

       We are all familiar with the phrase, “Actions speak louder than words,” but do we ever really pay attention to what that means? Although I have not held a paying job at this point in my life, I am pretty intelligent, and I understand the value of a dollar. I also have dealt with personal care workers for quite a while. And I know that this type of employment is unlike any other profession. It differs from any other profession in many ways.

One of which is expected while others are not. That outside of the unique situation that is the job of personal care can see a misunderstanding. The obvious way that aide care is different from any other profession is that there is no privacy. The most intimate functions are shared between two people. When a person has to use the bathroom, they need other people. When a person has an accident, they need other people. This, in and of itself, can both cause some incredibly funny moments. Still, it can also lead to the development of another way in which personal care is different from other forms of employment. I have been warned against it many times, but I find it impossible not to become friends with the person or persons who take care of me. When somebody is intimate with your privates or puke, you have to have goofy conversations to offset the awkwardness. Eventually, the aide usually quits, or you develop a deep bond and understanding because not everyone can relate to what you two are going through. This closeness and friendship often cause one to forget a very important element of the aide care job. It is indeed a job, and your client is often extremely dependent on you. In my case, for example, to put in a funny way, I am like a giant baby with a brain and a sense of humor.
       Many disabled people would not like this analogy, but if they were honest with themselves, they would find an accurate description of our situation. As for me, for example, I am fully dependent on others for everything. If there is a snot booger coming out of my nose and I feel it dripping down into my mouth, I have to ask others to wipe it. Some of these tasks may gross the caregiver out, but if they sign up for this job, then that is what they signed up for. Except for my awesome finger and its shitty driving skills, I can’t move. I am also physically dependent on people to get me in and out of bed. Other disabled people are in similar situations. Some caregivers have an interesting perspective on the fact that we are dependent on them. Some aides view it as doing me a “favor.” Yes, I admit that I would be screwed without help but let me give a quick English lesson. The word “favor” means doing something and not getting something in return. Hence, aide care is not a favor to any disabled person or me because aide care workers draw a paycheck!

It might be a shitty paycheck, but it’s still a paycheck. If one were in the real world and refused to do specific duties, their boss would not put up with it. However, I included, along with other disabled people, have to put up with it. Why is this, you might ask? Simply because we are so dependent on people, some give and take in aide care relationships. Still, my generation does not understand the difference between working for a friend and working in general. Yes, you are friends with your clients in most cases but don’t abuse the friendship and produce a substandard care level just because you know we have to deal with it. Or, as a former friend of mine said to me (when he was training someone on how to be a personal caregiver), “You should always take care of a person as if you’re going to be in their shoes tomorrow.”

Initially, after the last aide care bump in the road, I have to say that I was bitter and angry, and I had a poor pitiful “me” moment. However, that didn’t get me anywhere. I soon realized that this would be a part of my life, not a fun part, but a part of my life nonetheless. I also soon realized that I was angry at the situation as much as I was mad with my generation. For the most part, in my opinion, my age is so self-absorbed, and altruism is a word most do not know. They put no stock into being on time and no value into a commitment. This does not only apply when it comes to personal care purposes for entirely dependent people. I’ve found this applies to other areas of life as well.

When this occurs, it causes significant issues for several reasons. Apart from the unreliability that results from people not taking responsibility seriously, it also creates other problems. I live independently from my parents, and they live six hours away, and they freak out every time I have an aide care issue. This is understandable, but freaking out does not do anything, and it only exacerbates the problem. Many people ask me why I tell them about my issues. I tell them because I need someone to vent to before I drive my chair straight through a wall. However, telling them is both a positive and a negative thing. Telling them allows me to get out of my frustration, but it also allows them to respond with the following. “Well, you shouldn’t have to live that way!” or something similar to that.

I agree with their romantic view, but that is not my reality. I should not live that way, but I do, and for a couple of days after the latest incident, I wondered how I was going to deal with this reality of my life. During this period, I ended up getting miffed at my generation. Now one might ask, how do I connect the problems I’m having with a personal care issue into a generational commentary on the sad state of affairs today. Well, the only answer I have for that is I’ve always been an old soul. I think way too much, and I have a unique way of looking at things. This example is a perfect one. With my aide care situation, I realize something. Not all my aides were acting that way. It got me thinking since when did people not value their word or commitment?

As I’ve stated before, I feel that my generation is the most self-absorbed and selfish generation that I’ve ever met. Altruism was not a word that we learned, and we are more concerned with what other people think along with what other people are doing compared to what we should be doing. How does this relate to aide care? Simply put, some of those who are around my age do not view this as a job because they are close to me in age. They view it as being able to hang out with somebody and get paid. A key example, I’ve had aides who will “refuse to do certain tasks because I have other shifts that can do it for me.” Or they are tired or took the job because they needed time to sleep—or sometimes even money. They’ve also said that other shifts can do it for me in general. This has occurred in Edinboro, Pennsylvania, and when I was living at St. Andrew’s in North Carolina.

This is not only the dumbest philosophy that I’ve ever heard, but people often forget that one would not be able to pick and choose what they do at particular jobs in the real world. You can either do something all the way or not at all. There’s no room for someone who does their job half-assed. When you pick and choose what you desire to do in a personal care position, it can cause problems, and these are not easily fixable.

Often it is hard for the person being “refused” to say anything because they don’t want to lose the warm body, i.e., the person who’s helping them, and their support system often doesn’t understand this. Even their parents or their service coordinator say that the caregiver should not dictate the care, and in an ideal world, this is what one desires. However, if a caregiver decides to show up several hours late, nothing can be done about it. I’m not speaking about any caregivers in particular because I’ve had several that have done this.

Before I continue, a quick aside to show that I understand things from the caregiver’s perspective. When you get into private one-on-one the care, I am sure it is different than working for thirteen people or even forty people where you have a break from the individual, and you have other co-workers to vent to. I also believe that it is not right that caregivers should be at a client’s beck and call. I admit I have been guilty of this. I am not dodging my responsibility at all. I feel that a majority of disabled people (as I’ve said myself included, and earlier portions of my life) have the belief that the aide is there to serve them. This is not the case.

The aide is there to help them. That being said, I come to my next point. I also believe that anyone who does not understand the dynamics of the relationship between a caregiver and a client has no right to comment about what is going on between them regarding how well a particular aide is doing their job. Yes, I do believe that aides are often underappreciated and underpaid, and this needs to change. Like I said before, though, both parties have responsibilities to create a healthy client/aide relationship. And a note to all prospective aides, do not use this as just a stepping stone job because it is not a job one can take lightly! It is not like working at McDonald’s. If you are late, give your client the courtesy of informing them because they rely on you for everything. At this point, I’m not just talking about me. I know one person in particular who was stuck in bed for several days because she had no one. Again, back to the disappointment that I have in my generation.

My generation seems to think that everything should revolve around them. Altruism and responsibility are words of a foreign language to most individuals in my age, but the most unheard concept in my generation is a “promise” that is kept. A lot of people promise someone the world, but how many of them follow through? Not very many. Since when did our word become worthless? It is okay to tell someone, “No, I don’t think I can help.” in that situation. It is okay to tell someone how you feel. Not only is my generation skittish about being honest with their peers, but also, if their peer is in some form or another disabled, then this skittishness is magnified.

I am not expecting society to change overnight, but honesty must exist in the field of aide care. If you know you are not going to fulfill duties, you need to tell someone. Whether it is either about not being able to get there on time physically or if your client is asking you to do something that you don’t want to do, then you need to either discuss it with them or if it an essential piece of the aide care description then re-look at your job description. If you are uncomfortable with your duties, then get out of the aide care business!

A final note to my parents and any other parents of disabled people who might be reading this. The realities presented in this blog are much different than I’m sure the reality that you have envisioned for me, but they are the realities that I live with. People are not going to change overnight, but it is only through communication and action that change will occur. No one’s life is silky smooth. You guys only freak out because my current goals seem a lot larger than yours. Just because you freak out about them doesn’t mean it fixes the situation. Eventually, it might make me talk about the situation less to you. Not because I do not love you and your opinion but simply because constantly reminding of how my life should work out in a caregiving sense does not help me come up with solutions for what is occurring in my life.

In closing, I don’t know who will read this blog and what emotions it will inspire in people. I thought it needed to be written to discuss significant elephants in the room that disabled people and their caregivers often ignore.

 

 




      

 

 

Tuesday, June 18, 2013

I Can Write but It’s Time for You to React



All men were created equal. This is what it says in our Constitution. Discounting the irony in which it doesn’t mention the 3/5 slave’s clause. This is otherwise a good concept. It essentially implies that no matter one’s race, creed, religious belief, nationality, or any other distinguishing characteristic in America, they should be granted an equal opportunity. I have written a blog, which discussed a little bit of a piece of landmark legislation known as the American With Disabilities Act. However, today while doing some early morning reading, I was forced to ask myself this question, “Have we come all that far?”

       This year on July 26, The Americans with Disabilities Act will celebrate 23 years. It is almost a quarter-century old. It’s almost at the point where it has to make a significant life decision and stop relying on mommy and daddy but has changed for people with disabilities since the Act? My argument is that on the surface, improvements have been made, but legislation cannot legislate a cure for ignorance.

       This morning I found myself being proactive as my aide was sleepily frying me some bacon. I was cruising several news sites. Yahoo is set as my homepage, but to get a fair and balanced view of what is going on, I purposely look at both Liberal and Conservative sites. However, I did not get very far. Those of you familiar with Yahoo’s format know that there are often several stories along with a slider on the page. Immediately, the first story this morning caught my eye. The original title of the article by Jordana Devon was “Second grader in wheelchair set apart from classmates in a school photo.” Myself being in a wheelchair, I was intrigued by the article. The first thought that went through my head was, “I can’t be reading this right! This is not the 80’s anymore! We have One Direction and not NKOTB on the top of the Boy Band scene. No way can say what I think it says.” So to make sure I was reading it right, I clicked on the article. Unfortunately, I was reading the article correctly.

       In an extremely well-written article, the Yahoo Canada blogger lays out a disturbing story. Jordana tells a story of a seven-year-old in British Columbia who was set apart from his classmates when taking a second-grade class photo. The little boy named Miles Ambridge can be seen in the picture, trying to strain his body to be a part of the group. Jordana goes on to explain Miles’s disability as Spinal Muscular Atrophy. As she said in her article, Miles had been confined to a wheelchair ever since he was little. The report then gives readers the viewpoints of what Jordana would display as “heartbroken parents” in which the parents demanded a re-shoot of the class photo but were given the usual rope-a-dope-it’s-not-my-fault-response. It’s the other guy’s fault by the school and the photography company called Lifetouch. Before concluding her article, Jordana asks a very poignant question, “What do you think: Has this incident been blown out of proportion, or should the photo company be ashamed for its placement of Miles in the class shot?” Speaking from a disabled person’s point of view, I will say exactly what I said on the web page.

As a disabled individual, I do not believe this situation I being blown out of proportion. It is not the 80’s anymore, and we have legislation that guaranteed the disabled community to be given equal opportunity. Are we so messed up as a society that we teach our children so early to ostracize those different from us? By the looks of this photo, it is not the children who need to be in school but rather the adults. As Jordana quoted Miles’s mother as saying, “Kids can be cruel, but adults should know better.” Forgive me for saying so, Mrs. Ambridge, but yes, they should, but sadly they do not. The photo that your son was a part of clearly indicates a misunderstanding of difference. A misunderstanding that legislation will not correct. I am genuinely sorry for what you and your family were subjected to. I hope this incident does not jade you because while there are those in life who are intolerant of differences—those of us who are tolerant of differences far outnumber them. I am sure Miles is a great person, as can be seen by his beaming smile. I live in Northwestern Pennsylvania and would love to talk to you and your husband, along with meeting Miles, if at all possible. What you guys have gone through is ridiculous and sad, but I applaud your response to the situation whole-heartedly.

       As I said in my posting about the Yahoo article, what low Miles and his family had to go through is appalling, but it happens more frequently than one would like to admit. That being said, if Miles’s situation isn’t bad enough, there is yet another story I heard about this morning that enrages me even more. When I first heard about it, I could not even begin to blog because I knew if I did, I would be angry and vindictive. Also, my blog’s purpose would be defeated by my anger. After several hours of reflection, I was able to talk about the incidence that I watched and not exploded.

       As those of you familiar with Yahoo who are aware, if you read one article, they often have videos or links to other similar articles embedded within the item you are reading. Jordana’s article on Miles and his situation were no different. Near the end of the article was a video link that said, “Teens Steal Man’s Wheelchair On Long Island, Brag About It.” After reading the article on Miles, needless to say, I was in a mood to be aggravated. So I clicked on the video, which can also be found below. The video came out of Niagara County and a news organization there. It was of a News broadcast where a News Anchor was beginning a  story. Superimposed behind her was a picture of a wheelchair with the words “Wheelchair Stolen” underneath it. Quickly they cut to the main level. A man named Vincent had his wheelchair stolen from his home by a pair of 14-year-old boys. The boys, after taking it for a “joy ride,” admitted to dumping the heavy chair in a nearby bush. Unfortunately, it is believed that someone saw the chair and unsounded with it. This leaves Vincent in a predicament. Vincent is now forced to go around in a manual chair and be pushed around by his mother and others.

These two stories mentioned above not only irritate me beyond belief but re-emphasize the importance of education and advocacy. I am well aware that no matter where one goes, they will find ignorant people, but only through blogs like mine are advocacy groups such as United Cerebral Palsy. T.V. shows like Teal Sherer ‘s “My Gimpy Life” that a better understanding of disability will hopefully one day come to light. My goal in re-telling such horrible stories like this is to spark, you the reader, into action!

 As a disabled individual, I can be outraged and say how messed up these scenarios are, and it is my responsibility as a writer to do so. Still, you, as a reader, have responsibilities as well. It is only through acceptance of differences and your outrage at these situations that little boys like Miles may find a day where they are no longer ostracized for something they cannot control or help. Miles may be young and innocent now, but that innocence will not last long. He will one day realize that he is different, as many of us do. However, if society has changed even just a little bit by the time this young man reaches that age, then maybe he will not be ostracized for his differences but possibly celebrated. Then maybe young boys will think twice before stealing somebody’s lifeline to independence. I don’t preach very much, but that’s some food for thought.

 

 

Footnotes

1.) http://ca.shine.yahoo.com/blogs/shine-on/second-grader-wheelchair-set-apart-classmates-school-photo-173243067.html

2.) http://mygimpylife.com/

Sunday, June 16, 2013

We’re Really Not That Different


It’s been a while since I’ve written. I’ve been busy and am currently entered in the Screenwriting Challenge 2013 presented by NYC Midnight. So I’ve been bouncing around ideas for that. However, I watched a music video today that got me thinking about an old friend. In turn, that got me thinking about the idea of disability and relationships. For this blog, relationships are not talking about friendships but relationships on a romantic level.

       I ended up watching Rascal Flatts “What Hurts the Most,” which is a good video, and it got me thinking about someone I used to be close to. In this blog, I will refer to her merely as KB. Those who know me will know the initials, but since this is being read about the world, I want to protect her anonymity a little bit. Anyway, what hurts the most got me thinking about all that was left unsaid between me and this individual and the personal walls and hells I’ve put myself through. Once I was done having a moment of self-pity, it got me thinking about a larger concept about disabilities and relationships. Before one continues, I feel it is essential to place the following video here: I got the title for my blog. http://www.youtube.com/watch?v=-r9KAU-RKu4
As my one friend said, it is a relatively progressive video which shows that people of all shape, sizes, race, and beliefs at their core all possess fundamental needs and desires. That being said, there is a message that I need to espouse.

       As I’ve termed them, “exceptionalities” are no different, but when you have a physical exceptionality, it seems as if you struggle more to find a healthy relationship. This next piece of the blog may be a little uncomfortable to some readers, but it is the reality of my life and those similar to me.

       A certain amount of physical contact, whether sexual or otherwise, is necessary for any healthy relationship because words can only communicate so much. Sorry to keep referring back to music in this blog, but it is like the one band known as Extreme with their song More Than Words in which the song says, “What would you say if I took those words away?” http://www.youtube.com/watch?v=UrIiLvg58SY

They emphasize that words can only do so much. Physical contact is necessary. This is why I hold the following belief, and I also believe many others who are disabled like I think that it is tough to date somebody who is more disabled than you if you are disabled. It may not make sense to one who does not understand the dynamics but let me give an example. If I were confined to a power wheelchair and the person I am dating is also confined to a power wheelchair, it is tough to lean over and give them a hug or kiss. Some individuals overcome these obstacles, but with my limited mobility, I have determined that it would be impossible for me to date somebody as disabled as I am. Going along with this, I often find myself attracted to non-disabled individuals.

       No, I do not know what it’s like to be able-bodied at all, but I do know what it’s like to be a 20 something individual in my generation. It appears as if a majority of my age, whether male or female, is looking for a quick fix hookup type scenario. As a disabled person, I have needs as well, but I do not view sex the way my generation views it, but I acknowledge that even though I am physically disabled, I do have desires. One will find that if they ask a majority of disabled individuals whether they view sex as a casual thing or not, they will admit that they have strong sexual desires, perhaps stronger than those of their non-disabled friends. I cannot explain it, but this is just what I have experienced. That being said, there is a common problem when one has a physical disability. We often end up being the emotional boyfriend or girlfriend to someone rather than their actual significant other.

       What do I mean by emotional significant other? I have had many friends in my life, and I know other physical people who have also been in this situation. Where are you in friendship with somebody of the opposite sex? In the beginning, you feel no attraction to them because, unlike popular belief, we do not want to date everyone we are surrounded by if we have a disability. However, as the relationship grows, they find comfort in you as a disabled person because of your perspective on life and your way of looking at things, and they will come to you with their problems rather than their significant other. This, in and of itself, would not be a problem except that disabled people are human too, and eventually, feelings will develop in some cases. When this does happen: I will use an example from my own life but protect her anonymity; we will call her Cristina. Cristina and I were friends my sophomore and junior year of Undergrad. She started working for me as a part of my homework aide staff, and quickly we saw that we were going to get along. We started hanging out more outside the work environment. When you work with somebody constantly, as near as I do with all the people who help me, you will see sides of them that they don’t show the rest of the world.

Everyone has bad days, and everyone needs someone to listen to. Well, this occurred with Cristina. She was having relationship problems, and I was a good friend, or so I thought until one day she said to me, “You would be the perfect boyfriend except you’re in a power chair. I don’t know if I could handle it.” This is a legitimate concern, but I had no attraction to her, so I blew it off. As the days and weeks went by, however, the interest began to develop. Eventually, we revisited the conversation, and I said, “A while ago, you said I would be the perfect boyfriend except for the fact I am in a chair. What did you mean?” She replied with one of the most hurtful friends that a friend has ever said to me, “I don’t know that I could be with you because you’re in a chair. It has nothing to do with you. It’s just your chair.”

       First off, that doesn’t even make sense because of the chair; I may not like it is a part of who I am. If you cannot accept all of someone, how can you possibly be with them? Second off, I have heard people equated not like women of color, and it may be the same, but I do not see it that way. I see it as “I like you, but there’s something wrong with you, and if you could fix it, you would be perfect!” That comment from Cristina sent me into a deep reflective thought period. Or at least that’s the politically correct term for it. It sent me into a dark period where I had issues accepting who I was and contemplated suicide. Not cool, but it helped in the end. To end the Cristina story, let me say we remained friends for a couple of months longer, and she thought she could handle it, so she led me on. She liked the attention I gave her but was too afraid to hurt my feelings to say that it wouldn’t happen. I lost a good friend of mine Sarah Thompson over this. I should have listened to her, and this is my apology to her. I hope she can forgive me.  Back to my point, though. Persons with disabilities find someone that they are attracted to, and the attraction is stronger because not a lot of people give persons with disabilities the time of day in that department. Sad, but true.

 

       The Cristina example was to illustrate what I’m about to say. Relationships with persons with disabilities or exceptionalities are not that different. Still, they do not occur very often because of two reasons: one being the able-bodied object of affection is afraid of something or another, mostly having to take care of the individual instead then become a partner or two that the disabled person’s expectations of their partner.

       There is a small percentage of physically disabled and power chair bound people that ruin it for the rest of us. They expect the person they are with to take care of their every need. This means both physical, aka sexually, and physical, aka non-sexually. Persons with disabilities that small portion anyway sees their partner as a full-time caregiver and not a partner. This is what society has ingrained into abled-bodied persons’ subconscious that it will be this way. I am here to tell you that it will not.

       If a person with a physical disability who is either bound to a manual wheelchair or a power wheelchair truly cares about an individual, then they will not let you perform their personal care tasks whenever necessary. We are not that different from you. We laugh, cry, dream, hurt, we want, we love, and fear. The only thing that makes us different is our physical needs, and it is not your job as a significant other to deal with those physical needs.

       I know this blog will not change society’s perception overnight or relationships with persons having severe disabilities and non-disabled people. However, it is an issue that needs to be discussed and brought to light. We cannot pretend that disabled people are not human, and we cannot pretend that attractions do not occur. It is only through discussion and frank conversation such as this one that a few souls will change reality for the rest of us. In closing, I must say that I do look up to those non-disabled people, i.e., Kayte Fry, who, at one point or another in their lives, looked past someone’s physical presence and found the human inside their soul. Although we do not speak anymore, Kayte and I were not directly involved with your relationship with this person; I am eternally grateful to you for realizing that we are not all that different.

 

Footnotes:  

1.) Collin Raye “Not That Different” http://www.youtube.com/watch?v=-r9KAU-RKu4

2.) Extreme’s song “More Than Words”  http://www.youtube.com/watch?v=UrIiLvg58SY

Tuesday, June 11, 2013

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. 

Wednesday, June 5, 2013

The Question Everyone Wants to Ask but is Afraid Too

First off, I must thank you guys for the continued support of this blog. It means the world to me. Second off, I’m writing this blog because several people have asked me that they are curious about the issue. There are multiple types of disabilities but they can be categorized in two ways: disabilities developed at birth or disabilities encountered later in life. My one friend who works with the disabled population indicated to me that this is a hot topic for debate and also got me thinking. I have a family member who is going through similar issues at this point in their life.

I myself was born with a disability. I have Cerebral Palsy and it is a neuromuscular disability. It is basically like I have the ability to do everything but my brain does not know how to send the signals to the appropriate muscle groups. Due to my circumstance, I have had a long while to adapt to challenges and I have never known what it’s like to walk, even without the assistance of a walker or another person. I have never known what it’s like to work out like an able-bodied person and come home and feel exhausted. I have never even known the simplest pleasures in life such as being able to tie my own shoe. However, this does not bother me because I don’t know what I am missing. I cannot speak for others but in my opinion, it is better to have a disability which limits your functioning from birth rather than experiences both sides of life. I say I cannot speak from personal experiences however I do have friends that have undergone this predicament. I find that these individuals can be categorized into two types of people.


When one has their physical independence suddenly taken away from them it is no doubt mentally training and frustrating. I cannot imagine how my one friend felt when they were just about to go to school for diving and then the next thing they know they found themselves in a wheelchair. They have adapted greatly to their new circumstance and they do not feel society owes them anything because they are not disabled. I know others that never come out of what I have terms “the grievance period.” As I’ve stated many times on this blog before. I go to a college which has a high incidence of people I wheelchairs. The number of people in wheelchairs is equally split among people that have had their disabilities since birth and people that have grown into their disabilities. 


Apart from accidents, the most common form of “growing into one” disability is an umbrella of 40 disabilities known as Muscular Dystrophy. There are several common forms of MD but most show themselves during the heart of adolescence. MD itself is a genetic disorder that is not controlled by the birthing process. These individuals are not often cut down at their prime. When social development is extremely fragile in key. So I cannot imagine having to deal with losing one’s physical ability as well as adapting to new social settings and interactions. However, I find individuals that have MD seem to have a better acceptance rate of their new circumstance than people that find themselves disabled due to accidents. As I’ve said above, there are exceptions to this rule but in my small segment of the world, this is what I have observed. Perhaps this can be attributed to the way the support system around the individuals deals with the new challenges. I find that acceptance of one’s obstacles has a great deal to do with personal strength but also support around them.


In closing, because I do not have a disability that I was born into I feel that I could never do what half the people I know in the circumstance do every day. I look up to my family member who is going through it right now. They are one of the strongest people I know and they’ve always been. This is why I know they will get through it. What I don’t understand is how they can say they look up to me because even though we are in the same physical predicament now the way we have both gotten there is completely different.


People have asked me if there was a cure for my disability, would I take it? My answer is not. I would not. At this point in my life, I am at a comfortable stage. I have developed a comfortable series of physical care routines and a comfortable way of dealing with my circumstances. I would not want to go back to being a two-year-old just to be able to walk, run, or jump. One thing I would like the ability to do is to wipe my own butt. Not because it’s an enjoyable task by any means but simply to gain a sense of privacy that is not available to me at this point. However, when I look back on it all I am left with this question...do I really have it all that bad? One, I did not lose anything. Two, if I was an alien looking down and saw someone in my predicament who was having things read to him, food fed to him, his bathroom needs to be taken care of, I would think to myself  “these must be the kings of the world!” that’s just my unique way of looking at it. Just some food for thought.


Question: For those who are able-bodied would you rather have it and lose it? Or not have it at all? You can comment 

Tuesday, June 4, 2013

It’s All About How You Handle It

Okay, so many of you who read this have noticed I've written a lot about the severe side of disability. The labels, the misunderstandings, and even the medical jargon but to this point, I haven't written about the humorous side of disability. This will be a little bit more of a personal share for me, but it is important. You know that I can't drive all that well for those who know me exceptionally well. To put it kindly, I am no champion race car driver. For those of you are not aware of my ineptitude of driving my form of legs. Let me explain...

I am a 26-year-old lab. Wheelchair, but this does not mean I act like it. I treat my wheelchair like a dirt bike.  I go out to the bars and even ride my wheelchair down the street in the dark, which gives my mom a heart attack. One of these times occurred approximately four years ago. I was conducting personal business at the bank when I had another of what I would call a "Jay moment." I had taken the local public transportation to the bank and was on my way out when CP struck. Dang, CP! Just kidding. I say God was having an off day, and he needed something to laugh at. My right front wheel got caught on the stairs' lip at the bank, and I proceeded to tumble headfirst down to the bottom. Those of you who haven't tried stair diving are pretty fun until you hit bottom because you remember that gravity is not your friend. I am sure those who skateboard or snowboard can relate after having missed time to jump. When they took a fall down a flight of stairs, an average person would be nonplussed, but that was not my reaction. While everyone else around me was concerned about my physical health, I laughed at my stupid driving skills. Those of you who are reading this may wonder, how bad can a fall have been? I mean, you probably hurt your head and face, but really how bad could it have been? Well, let me answer that question.

I was taken by ambulance to the local hospital, but I left one important thing behind. The scene was so bad that they had to leave my chair there and tape it up like a crime scene because blood was everywhere. My dad's exact scene words were, "There's crime scene tape. What the hell?" But here comes the true Jayism as they were fixing my nose and dry material from it. I made the following comment to the Nurse, "Lady, I've been waiting for 21 years for somebody to pick my nose. I'm enjoying it." This story is only the tip of the iceberg. The next two stories will indicate that disabled people aren't that different from non-disabled people. It is all perception.  

I could sit on a swing in another famous Jay moment, not remembering that my equilibrium is not the greatest. My balance, therefore, suffered immensely. Shortly after I got on the swing, I got off it again, but not in the way I was supposed to. My dad stepped away for a second and went to answer a phone call. The next thing I know, I was looking up at the sky. This last story is not so humorous, but it demonstrates a critical point.

Sometimes when you are in a wheelchair, you are so dependent on other people that most of your needs have to be taken care of by someone else. This is the case with me. Unfortunately, this is even the case with such basic needs as going to the bathroom. Those who know me near might ask why I'm about to tell this story, but as the title says, it's all about how you handle it. There have been many times where I have been without help, and I'm human, so eventually, I need to use the restroom. However, when you do not have anyone around, you are not left with many options. Unfortunately, one of these times occurred while I was in class. To this point, I have been able to deal with my issues in a discreet way, but I was in a theory class in my sophomore year when an accident occurred. I had been adept at not hiding it but dealing with it if this situation happened in a public environment before. However, it had never happened in an academic one, and as we know, youth can be judgmental. It was no different on this day. Unfortunately for me, someone noticed and said, "Oh, look at that disabled person. He pissed himself." I did not handle the situation as I am going to advocate when I do this blog. I became embarrassed and left the classroom. I became very depressed, which is a natural human reaction, but as I have learned with my driving mishaps and this personal mishap and others, sometimes life's road is bumpy. 

I don't have all the answers, but I know that disabled people out there feel sorry for themselves because they are disabled. The only reason I bring this up is that I was once like you, but the reason I've told these personal stories is for one purpose. It shows that there are bumps in the road, and not everything can be accounted for, and there are days where we are all going to be depressed or bummed about a certain aspect of their lives. This is whether or not we are physically disabled. The hard part when one is physically disabled is hiding our depression or embarrassment. The one key that I have found is to use humor. Now, at the time, the accident situation was not humorous, but looking back on it now I just see it as another moment in Jay's life. I am not expecting anyone to agree with me entirely, but if disabled people began to see the mishaps that occur in their lives as just a part of life, maybe the able-bodied community will not feel so sorry for us when they occur. As I said earlier in a post, one has to roll with the punches and can't dwell on the negative. It's all about how you deal with what life has dealt you. It is not about wishing that life would deal with you something different. 

Saturday, June 1, 2013

Terminology Debate

"Language... .has as much to do with the philosophical and political conditioning of society as geography or climate...people do not realize the extent to which their attitudes have been conditioned since early childhood by the power of words to enable or condemn, augment or detract, glorify or demean. Negative Language inflicts the subconscious of most people from the time they first learn to speak. Prejudice is not merely imparted or superimposed. It is metabolized in the bloodstream of society. What is needed is not so much a change in Language as an awareness of the power of words to condition attitudes." (Saturday Review 1967)

When one thinks about the above quote, it doesn't sink in, so we take a closer examination of our surroundings. From early infancy, ours is conditioned by our physical surroundings and the Language we take in. For example, a child in India will learn several dialects of the Indian subcontinent. U.S. English will be utterly foreign to them. However, someone in America will quickly pick up on the U.S. idiom of chilling if they have grown up in American culture. It is a great wonder how powerful a language can be. It can be neutral, it can be positive, but it has its most significant impact when negative or assuming. 

This blog came about as a result of a conversation with a friend of mine named Laura Carson. She recently asked me what the acceptable term is for someone with a disability? It got me thinking, what exactly does the term "disability" even mean? Words only have context if we give them context. I use the word "gimp" to refer to myself quite often. For me, it has no negative context because I am using it humorously. However, other individuals who are in my situation distinctly hate the word. Why is this? The answer is simple. I was not conditioned to have any negative connotation of the word "gimp." The first time I encountered the story was positive. Indeed, in a movie entitled King Gimp about an art student named Dan, who was extraordinarily disabled but used his disability to increase his quality of life greatly. I recommend that everyone, whether disabled or not, at some point in their lives to check out this excellent documentary. It will give you a different perspective on disability and life in general. 

However, back to my point. Because I positively encountered the word, there's no negative connotation behind it. A language is a unique tool that humans possess. We can establish our meaning and context for a variety of words. Something insulting in one Language may be a term of endearment in another. Not to get too controversial, but even the meaning of the n-word is all based on context. Nowadays, there is no argument that the n-word has a negative connotation, but that is due to its sorted past and the way it was used. The word's original meaning meant "ignorant," but it no longer has that definition because people have given it such a negative context and definition. The same can be said for terms relating to disability. One of the most common terms to describe disability is true "disability." Isn't this a negative term, though? Disability implies that someone cannot do something, which is partly true for anyone who cannot walk or cannot speak normally. However, it is also not true because just because there is one way to do something doesn't mean there aren't other ways around it. 

I have never been one to be politically correct at all. Like I said above, I make fun of myself all the time, but I do understand the need in an appropriate professional setting to be non-condescending. Therefore, I make this argument. The term "disability" should no longer be used. One might ask...what do I suggest? What should be used to replace it? In my education classes, a term that is often used is exceptionality. I think this is a neutral term—neither positive nor negative, which allows the person with the exceptionality to determine the word's context. The person sitting next to me, helping me write this, is exceptional in some regions of her life just as I am exceptional in certain areas in mine. Neutral Language, while not changing one's condition, maybe better than society immediately labeling a person. Because as much as I would like to hope that society's labels don't impact people, I would not be honest if I said this was the case. On the deepest level, the Language that we hear every day affects us. To make this point even clearer, let me cite another example that my friend mentioned in the same conversation. 

My friend described the concept of how their race labels everybody. When we are young, we do not know the difference between a Filipino American and a Japanese American. It is only through social interactions that we learn the difference, and Language is a formal creator of difference in the world. In closing, I argue that you can call me "crippled,” "disabled,” "exceptional," or whatever you like depending on the emphasis behind the word. I don't care about the actual word, but what the meaning behind the word is. 

I know many of you haven't been commenting, and I appreciate your readership, but I would also like to see where you stand on this one. How do you think Language affects society and the creation of difference? Am I on to something or totally off base? Let me know what you think in the comments below. 


Footnotes: 
1.) http://www.disabilitymuseum.org/dhm/lib/detail.html?id=813&page=all
2.) http://www.imdb.com/title/tt0239528/