Come On, Man!

 So a couple of days ago, a friend of mine sent me a group message on Facebook. Usually, I ignore group messages, and I don't know why, but I do. This time I checked it out, though, because this friend does not usually send group messages. Upon further review of the message, I clicked on an article, which was very disturbing. This blog piece is less applaud and more a letter to the subject of that article. 
       Most of us in this U.S. love sports, and one of the most popular sports in our country, is the NFL. For my unfamiliar world readers, that stands for the National Football League. Football players in America have undergone many changes throughout the decades. When the game started, there was not as much fanfare surrounding it as there is now. Players got "real" jobs in the off-season and did not forget that they played a game for a living.       

       However, as everything does, athletes' perception gradually changed, and now they are seen as notable celebrities. With this newfound fame came certain shortcomings. Some athletes developed the opinion that they were above others. I can understand how this occurs when one makes millions and millions of dollars to catch a ball or, in the case of this article subject, to throw that ball. I love sports. I'm a sports junkie, but to steal a famous line from a Monday night countdown show on ESPN by one of the best sports anchors ever—Chris Berman, when I read the article, all I could think was, "Come on, man!" I will put the actual link for the article at the bottom of this blog post. It can also be found on this blog's Facebook page located at www.thevoicelessminority.facebook.com. In short, the article was about how athletics can corrupt a person. Athletics can change people who are completely logical and normal into egotistical morons. 
       I am sure Jay Cutler (who the article is about) was a nice individual before he started to play Football, but I must ask Mr. Cutler a question. How many times have you been sacked, and are you don't still have a concussion? That is the only way I can explain your ignorant comments in a recent pro football mock article. The article, which I'm sure you are aware of by now, Mr. Cutler, was about your defending your illegal use of an accessible parking spot. You said, "goddamned if I'm going to wedge this $250,000 beauty into one of those narrow ass spots in the back of the lot like some practice squad chump, and then schlep my ass to the building for some stupid film study sessions or whatever." So let me guess this straight, Mr. Cutler. You have perfect use of your body, you have a god-given the talent to throw a ball better than 95% of the people on this planet, and you get paid millions and millions of dollars to do so. Yet you don't want to use your working ways to walk across a parking lot?! Is that precisely what you are saying with your quote? Before you say, "Oh, you're just some fan who doesn't understand, and you're a pion," let me tell you a little bit about myself, Mr. Cutler. I am a 27-year-old disabled individual who is confined to a power wheelchair. I have Cerebral Palsy, which is a neuromuscular disability, which affects my motor coordination. There are thousands of other people like many others and me who have different physical disabilities—one of which works as a payroll clerk with your Chicago Bears. The comment you made was made before your recent groin injury. Suddenly you have had a change of heart! Now you demand that your beloved Bears have a golf cart with an attendant at your beck and call. 
       Mr. Cutler, I am sure playing the game of Football or being an athlete, in general, is more challenging than I can imagine but (and I'm trying to be as lovely as possible) you could never survive a day in my life or anyone else's life who has it 10x worse than you. The Bears should be ashamed that an ignorant individual such as you represents their organization. In case that wasn't a clear enough statement on how disappointed and outraged I am as a disabled citizen, let me put it another way for you. You should be ashamed of yourself as a human being. Maybe, my friend, you should get your head out of the clouds and realize that you have a luxury that 95% of the people in this world never get. Maybe this little groin setback should serve as a wake-up call to show you that life can be a whole lot worse, but it probably won't. People like you perpetuate continuing stereotypes ignorance about people with disabilities and people who are different in general. 
       I am not just a disabled person. The fact is, Mr. Cutler, I am going for my Master's Degree. Indeed, I am in the process of taking my last class for my Masters in Education. The game you play will end someday. I hope for your sake you have something to fall back on. As I said before, you should be ashamed of yourself as a human being, and anyone who supports you after the comments you made is equally at fault. They may not be ignorant, but they are complacent and complicit. 

Sincerely,
Mr. Jason Hahr

Footnote:
1.) http://profootballmock.com/jay-cutler-now-legally-permitted-to-use-handicapped-spot-hes-already-been-parking-in-for-years-anyway/

Government Shutdown

So I've written a lot about disability issues, and while that is my main focus for this blog, I thought I would expand it a little bit. To show you (the reader) that while I, as a disabled person, am very aware of issues that concern the disabled community, I am more than just a disabled person. Therefore, this blog post is going to talk about something relevant to all of us as Americans--the recent Government shutdown
       Now I realize that you guys are probably sick about hearing about this from talking heads related to media on both sides. Because of the advent of cable T.V., the news media doesn't work hard, but they repeat the same thing over and over again. They treat us like Five Second Tom from Fifty First Dates.  Five Second Tom is an individual that we meet in the care facility with a five-second memory and re-introduces himself every five seconds. The media treats us, the American people, as if we don't comprehend what they tell us. As a result of this perception of their audience, they are forced to reiterate the same things repeatedly. The government shutdown was no different. 
       Every second, you would hear either major media network describing what was happening as if the American public wasn't aware. However, (remember the media stated last night) America has gotten to the point where we ignore what goes on in Washington because Washington has not become the little boy who cries wolf. Every other day there is a "crisis," and in the Obama Administration, it's been the Benghazi scandal, the IRS debacle, or the "fiscal cliff fiasco." Everybody blames Obama for the fiscal cliff fiasco while playing a part with his "Obama care" idea. I only call it Obama care because the majority of the nation calls it that now. It's called the Affordable Health Care Act. Obama is not the only one that caused America to be where we are at financially. 
       Who do I blame? The answer is simple. I blame our culture and our society. I don't blame capitalism. This is not a communist rant or a push for socialism. It is a call for reason and logic! Let me explain, and the best way I can do that is by using a note that I recently wrote on Facebook in regards to a situation my University is going through. 

 "Okay, So I've never been a fan of authority. I always do what people tell me I can't do. I guess it comes with being not your average gimp. Lately, there's been a lot of stuff being said about how our University is a horrible place, and don't get me wrong, I've had my moments when I disliked certain things, but perhaps the federal government can learn from the hard decisions that the University has to make right now. The fact is, no one can spend more money than they make. I've learned that the hard way. No university, government, or person is immune. A similar issue to the one our University is currently facing occurred at my former school several years ago. At the time, I was bitter because they closed the handicap personal care program. Back then, the president presented similar economic facts to the ones Dr. W offers below. Difficult choices had to be made, and they have to be made now. By no means am I an advocate for everything my University does? I've had my battles with them, but I have this to say as far as what's going on now.

     Many people have been complaining about here, and some of their complaints may have been based on fact, but some, have not. When people are involved in a situation, they do not often take time to look at a situation's facts. They/ only tend to see the facts that benefit our point of view. How can we bitch at the government for overspending when we are not taught as a society that overspending is not okay. The University has to make difficult choices right now. They are not ideal, but unless we know all the facts, who are we to judge? Just saying.  Below is an email that every university student got. Most of you probably ignored it because we tend to like to complain rather than deal with the realities of situations. I thought I would include it below. Ms. W and the administration will try to put the most positive information out there, but at least they are presenting more facts than most people that I know who talk about it. 

   

 

Dear Students,

 

As our academic leaders continue to explore alternatives to the faculty retrenchment proposals in the Operations and Workforce Plan, I am writing to update the critical discussions on our campus. I believe the open flow of accurate information is the best way to reach the decisions we need to make together about cutting our expenses, increasing our revenue, and positioning our University for a healthy future.

 

Through talking with numerous student groups over the last several days, I learned that our students had heard a great deal of misinformation about the proposals and the impact of possible faculty retrenchment on their education.

 

To clear up this misinformation and calm any fears that the misinformation has created, I want to share the following:

 

-          The Operations and Workforce Plan is a collection of proposals. It is a starting point for the process of finding the best possible ways to balance our budget. When a specific course of action is chosen – to save a significant proposed for a moratorium or to act on a proposed cut, for example – I will share that information with the campus community as soon as possible.

 

-          Our academic leaders are working with department chairs and other faculty to ensure that cost-cutting has the least impact possible on faculty and students. This process will continue throughout the current academic year. Already they have made good progress on determining alternatives to eliminating faculty positions.

 

-          All University students will be able to complete their degrees, even if their program is placed in moratorium or faculty positions are eliminated in their department. 

 

-          Our Art Department is not being eliminated. Art is our flagship program here at our University and a significant part of our identity. The only proposed cuts in that area are eliminating five and a half temporary faculty and one regular faculty position, which is vacant, out of an extensive department.

 

-          I am very hopeful that a way can save music and music education as majors. Music is an essential and valued part of our campus culture. However, even if it can't continue as a major, music will continue to be taught and performed at the University. We will have a band, bagpipes, and ensembles.   Students currently enrolled as music majors will be able to complete their majors without interruption.

 

-          Cost-cutting, including reductions in the size of our faculty and all other employees groups to bring their size in line with our smaller enrollment, is unavoidable. The University will spend $7 million more this year than it takes in through tuition, fees, state appropriation, and other sources. Next year, we will spend more than $10 million more than we receive if nothing is done to adjust our costs. We don't have enough money saved in our reserve to continue outspending our revenue beyond this fiscal year. 

 

-          Our state appropriation is the same as in 1997, but those dollars have far less buying power. Just as the cost of your phone plan or favorite foods periodically go up, the items and services that the University must pay for becoming more expensive over time. Our appropriation would need to be 42% larger today to pay for the same things it did 16 years ago.

 

 

And finally, you are free to express your opinion about the Operations and Workforce Plan proposals. I encourage it. Your voice and suggestions are valued.

 

If you feel moved to participate in a demonstration, that is your right, and I respect it. Another productive way to express your opinion is to join the conversation on campus about our budget challenges. The next campus-wide Budget Forum will be held Monday, October 7, from 1 to 2:30 p.m. in Pogue Student Center - Multipurpose Room A. My next Listening Hour also will be Monday, from 3 to 4 p.m. in the Crawford Center Conference Room. Your questions and input are welcome at both of these sessions. You also can share your ideas for reducing expenses and increasing revenue on our online Operations and Workforce Suggestion Forum using the link on [webpage].

 

This is a difficult situation that demands that we face our challenges directly. Solutions to fix the continuing budget imbalance created by reduced state funding and lower enrollment must be creative but realistic. We must act decisively this year for the long-term good of the University and you, its students. I continue to be overly optimistic that together we can and will achieve the savings and develop the new revenue sources needed to keep our University strong and make it even stronger.

 

Best regards,

Dr. W"

       The above note is a microcosm of a lesson that both parties need to learn. If one who makes 500 dollars a week, they can only spend 500 dollars a week. The government is acting like a college kid who gets all those credit card offers in the mail. They think just because we're allowed to spend into debt that it means we should. Now I am not an idiot. I realize that this is not a Republican or Democrat issue. As I said before, it is a societal issue. In the last 2 or 3 generations, we have not been taught the value of saving and being responsible with our money. I am a perfect example. However, until we learn this philosophy, we are doomed to repeat the same course no matter what part is in power. 
       As far as shutting down the government to get your point across, no matter what side you are on, I think there is a crucial point or philosophy that the American people have learned from this shutdown or should if they haven't. These officials there in Washington, no matter what party they represent, were put there by us. We need to take some responsibility and remember what special privilege we have on the nation and how we have to change the system. We could act like my friends on Facebook and continue to bitch about the problems this country has, or we could radically alter the system. Whether it be radically transforming it for fiscal change or disability/women's rights. If we let the system live as it always has, we will always get the same results. 
       Take, for example, the bill they passed to re-open the government as of 12:01 a.m. August 17. They only passed a bill that would give us funds for 90 days. They didn't make any significant changes. They are still squabbling over the same decisive issues that they have been for weeks now. Because ideology thinks they are better than another one. I do have some fiscally different ideas from others, but this is not the place nor form to present them. If I did, I would be like every other talking head on T.V. trying to present their side as the "correct" one instead then trying to find the solution. This goes way deeper than whether or not I represent an elephant or a donkey. My political party should not matter. As our first president said, "A nation should beware of political parties" because they will get us in the mess we are in now. What should matter is not always being right all the time because not everybody will be happy with everything all the time. So this is a call to Congress and Obama, but most of all, to the American people. It is time to stop telling us what you want or what you're going to do and do something about it! Put your ego aside, and remember you live in a country with 316,869,000 people. It is not just about what YOU want, but it is about compromise because no one can be king. We fought a war because we did not want to be controlled by a king, so quit acting like one side is right, and the other side is wrong.

       I'm getting off my soapbox for now, but the above should demonstrate that no matter your physical ability, one could have a voice or opinion about critical issues. People often see those with disabilities as "passive citizens." Well, this piece should indicate that some of us are not passive at all.

 

                                

 

I’m Disabled--It Doesn’t Mean I’m Dead

It falls again. It's been a while since I've written because I'm back in school, and that comes with the Fall and along with another great American past time, that being NFL. The National Football League is one of the most talked-about things in American life. Sports, in general, play a significant role in American culture. The sports phenomena units people that frequently have very little in common. There is a spirit about competition in the sports arena that is hard to find anywhere else. However, usually, one group of individuals who are not associated with sports or at least disability in sports doesn't come to mind simultaneously in most people's minds. The disabled are not that different from anyone else, though, when it comes to their love of sports.
       Anyone who knows me will tell you that I am an avid New York Giants fan, and I often yell at the T.V. when they screw up (which happens to be a lot this season). I am also a die-hard New York Yankees fan, and I love hockey in general and college basketball. I am often asked, "How can you be that into sports if you can't play them?" And yes, I can't play them, but I can still feel the drive and adrenaline from a game. It's hard to explain. Disabled people don't only sit and watch. We also compete just as hard, if not harder, than regular athletes. There are misconceptions when it comes to disability and sports. Through an interview I recently conducted, I hope to dispel some of these misconceptions.

       As I have said in previous blogs, I go to a University in North Western Pennsylvania. The University prides itself on being an "inclusive" campus for people with disabilities. As a part of that effort, they have a wheelchair basketball team. I was recently fortunate enough to be able to interview a senior on that team. Kate Chaser was kind enough to discuss basketball sports for people with disabilities and disability awareness in general. Before I get into the interview, here's a little bit of Kate's bio. Kate is a senior Public Relations major with plans of going to Grad school. She has not yet been accepted, but she is still hopeful. She is also a part of the University's sizeable student-athlete population. She plays point guard on the wheelchair basketball team.

       To give an unfamiliar reader a little insight into wheelchair basketball, I asked Kate to explain it a little. She explained that she first started playing when her mom was suggested for Kate to play at a function for the Philadelphia chapter of the spina bifida association. Spina Bifida is a disability that has made Kate a person with paraplegia. It caused her to be born with a hole in her spinal cord. As far as basketball, Kate started playing around the age of 10. This opened many doors for her. As Kate put it, "It gave me many opportunities that I would not have had if it wasn't for sports." She went on to further explain that not every state has a wheelchair basketball program. Thus, the competitive pool is small, but although the pool is small, the sport's competitive nature is anything but small. These athletes are some of the most intense athletes you will ever meet. The only way that the game differs from regular basketball is in a little technical fashion. Athletes are allowed to dribble the ball once and then push their wheels twice before dribbling again. Apart from that, the physicality of the game is the same as its "able-bodied" counterpart. 
       Now that you understand a bit about wheelchair basketball, I can get further into an exciting point that Kate made. "Even though we are athletes, we don't get the same respect as other athletes," said the senior. When I asked her what she meant by that, she displayed tremendous insight. She pointed out that people with disabilities have often been relegated to in a power chair needing full assistance or not disabled. Many times people don't see the varying degrees of disability. They lump disability altogether. This goes back to the societal habit of seeing the disability before they see the person. To make this point clearer, it is like comparing the Special Olympics to the athletic contests that Chasar and her teammates engage in every season. Both involve disabilities, but they are remarkably different. 
       Why is it that when it comes to disability that the disabled are seen as quiet, timid, or sideline sitters most of the time? People often think that just because people have a physical obstacle that they must overcome, they do not have a competitive spirit. Kate has a concrete example of the idea that this is an outdated thought. She gets up nearly seven days a week at 7 a.m. and practices for three hours, then takes on a full college schedule (much like any other athlete would do). Aside from that, she also has to deal with obstacles in her everyday life that not every person has to deal with. As she notes, her obstacles are less severe than others, but it still has presented challenges in her life. 
       "Sports have allowed me to develop "normally," and I don't know what I would do without sports." You might ask what she means by this statement. Usually, people with disabilities sit on the sidelines and don't engage the outside world. Even though I have a disability myself, I haven't figured out why this disturbingly more common than you think phenomena. Being involved in sports or other "normal" social activities allows people (disabled or not) to develop a sense of community and commodity necessary for human existence—the story of Kate and others like her highlight an interesting point. 
       No matter our obstacles, whether physical or mental, we all have a spirit that is dying to be expressed in one form or another. Some use writing, music, violence, and video games, while others use sports. Disabled people and the disabled community are no different. What is different is our society's perception of us expressing our spirit normally. We are often seen as "inspirations" or "amazing" when we engage in everyday activities that no one expects us to get into. This blog is not designed to get rid of all the "you are amazing" comments but shows that people like Kate Chasar and I are not unique. Disabled people, in general, have passion, and we are just like the rest of society. Sports are only one way that we express our love for life. That being said, there is one other point worth mentioning. 
       At the University, which I currently attend, disability is supposedly one of their calling cards. One of their badges of honor. Not to downplay a great University for the few things they do well, but as a person who has attended the University for several years now, I feel like I have the right to say if you are going to champion the disabled population as one of your cornerstone attractions, and push disabled athletics (as far as wheelchair basketball is concerned) you might want to give them equal time as other programs. I am not an athlete as I am down to a power chair, but I know this is not just a sentiment, which I hold. Others have said that the wheelchair basketball program (of which Ms. Chasar is a part of) is treated as a second-class athletic program. Their games are never promoted on equal footing with other events; they have often pushed aside other schools and organizations to use our facilities. Yet, one wonders why disabled sports, in particular at this University, are not well known. As Ms. Chasar's interview and the above indicate, people with disabilities have a spirit that loves competition, loves self-expression, and loves adrenaline despite our obstacles. Now it is time for society to appreciate who we are and what we can do.

Along with not treating us as abnormal or "amazing" when we express the same emotions that everyone else does and enjoy the same things daily. This is my motto, but hopefully, it will be a motto associated with all people with disabilities. Despite our obstacles, fear nothing and regret less. 

 

 

Forgotten Importance

       As human beings, we have an inherent desire to achieve independence, and it is only through social contracts in societal constraints that we enter into communities with others. This is a very simplistic way to put human beings’ desire for independence into words. However, it often right that this desire often comes with conflict relating to society and everyday constraints. Some groups face different conditions. Like for example, the restrictions placed on the disabled community are more prominent. 
       When it comes to disability, I have a unique perspective. I’m a twenty-seven-year-old male who relies on others for most of my physical needs to be met. When I say that I rely on personal care, I include such tasks as showering, eating, dressing, and even moving from a supine position in bed to a functional upright position in my wheelchair. Those in the aide care profession are crucial to my life, whether I want them to be or not. That being said, there are many things within the current aide care system that results in a disconnect between care providers and the people they assist. 
       Having a disability does not limit me as a person. I am currently in the middle of completing my last class for my Master’s degree. My situation is not commonplace, but it is not unique either. Many of the people who personal care aides take care of our disabled, intelligent, goal-driven individuals. I live in a college town where approximately one hundred students with physical disabilities attend a local university. The aide care community in this town is vitally important. Often those in the aide care professionals do not remember just how important they are to this community. They forget that other human beings rely on them for such simple things that they do every day and take for granted. Many of them have not even thought about what they would do if the situation were reversed. Often in college towns like mine, the aide care profession is heavily inundated with individuals who see it as a transition job. I am here to tell anyone who reads this that aide care should be classified as anything but a “transition” job. On the contrary, those who pursue aide care as a profession should follow the profession because they desire to help others and not just get to the next step of their plan.
       I understand that it is difficult in today’s economy to find a job, and not all jobs are attractive. I am also well aware that this article may come off as semi-arrogant. It is not intended to do so, but some people might take it that way. I believe that aide care and the professions associated with it, i.e., physical in-home health aides, agency coordinators, office personnel, nurses, and social workers, should not consist of apathetic and uncaring people. Now many may say that these types of individuals are scattered throughout all professions. That may be true, but it does not negate that the aide care profession should not seek to be like all other professions. Instead, it should hold itself to a higher standard. 
       In recent weeks, I have had my share of bumps in the road. I am not by any means saying that my bumps in the road are any harder or any less unexpected compared to other individuals. I am saying that the bumps in my street have been related to my disability, though, and could have been avoided had the people surrounding me approached their position in my life differently. If they did not see me as just a paycheck but as a living and breathing human being—maybe they would not find it so easy to call off at the last moment or to regularly not even show up. I understand that this is a romantic view of life. 
       As we progress into the second decade of the twenty-first century, it is sad but true when someone says that we are more self-absorbed now than ever before. The prevalent altruism used in the “Barney Fife” and “Leave It To Beaver” eras have sadly gone by the wayside. Along with that, it has died another very important idea, which is the “meaningful promise.” The dictionary definition of the word “promise” is a declaration that one will do or refrain from doing something specified. Sure, people say, I promise I will do that, or I promise I will be there for this, but rarely are those promises ever kept. Promises now become a placeholder when we don’t want to make somebody feel bad. This is also extremely true in the aide care profession. Often people will “promise” to cover specific shifts but conveniently forget. I am realistic, and I know that in life, sometimes things come up unexpectedly, but if you are not even man or woman enough to pick up the phone and tell me (or anyone else in my situation) that you are unable to come—or flat out do not want to go in, then don’t even bother, “promising” me anything. 
       I may be angry after reading that last paragraph. Overall, I am not, but sometimes it is essential to show that, yes, even disabled people have spouts of anger. Anger is a great motivator. I hope that what I have said and what I will continue to say in the rest of this article will help those in the aide care profession understand their importance. The current system perpetuates “aide apathy” (as I like to call it), but just because the system is broken does not mean that people cannot rise above it. There is no earthly reason that anyone can give me to explain why a twenty-seven-year-old female was left in bed from 11:00 pm to 11:00 am until the next day, which was not by her own doing. This young lady was left in the ground because somebody overslept or decided not to come in. I understand that the aides that care for us, the “disabled community,” are human as we are—but whether it’s fair or not, they need to be held to a higher standard. To illustrate, let me use an example. 
       I know that I have hammered home the point of non-apathy by the aide care population throughout this piece, but here is a very powerful example. Consider the person(s) you are taking care of like your children. Would you want your son or daughter to have to sit for hours in urine and feces? Just because someone didn’t want to do their job because it happened 20 minutes before the shift ended. I think the common sense answer to this question would be no. Also, consider that same idea when making plans to go out and party the night before working. It is notable to mention that the tardiness and constant call-offs have to be tolerated because disabled people have no recourse and other substitutes for you. Or so you think. Your assumption is probably the case, but remember that at some point, everyone can be replaced. It’s a harsh reality, but it is a reality of life that many in the aide care profession forget about.      
       I have been harsh on those in the aide care profession throughout this piece, and before I close, it is important to mention that I do appreciate the aides, and I understand that the system is broken. How can a person who takes care of someone 20-40 hours a week not develop a bond with him or her? It is impossible. However, many who are not in the industry but know people who utilize services believe that neither the consumer nor the provider should get involved in each other’s personal lives. I have a question for them. How do they expect that to happen when each individual is such a large part of the other’s life? I am so harsh on those who provide aide care because they need to realize how vital they are and how important they are to the system. Hopefully, this piece will do a little bit to boost the confidence of consumers and the awareness of the individuals who take care of them. 

 

Finding The Way

       Hi guys. This blog will go a little off format. I know this blog is designed to talk about disability issues, and this one will cover a few personal details as you all seem to have responded well to the last blog, where I told a little bit of my personal story. That gave me the idea for this one. 
       A new school year is about to begin. My baby sister is finally growing up! She moved into college dorms this weekend, and that hit me interestingly. I know it's not a very good description, but it's the best way I can describe it. I have two Bachelor's degrees, and I'm working on my third. People think that's so impressive and amazing, but I look at this little seventeen-year-old genius (yes, I said seventeen), and I wonder, what am I doing with my life? She is already certified with 90 hours of preschool assistance that translates into some certificate in Maryland. Sorry, Kim. I don't remember all the details. She's going to have about a semester or half a semester already done. Overall, she is exceptionally goal-orientated, and I am very PROUD of her. However, she makes me question myself. 
       For the past couple of days, I have been debating whether my lack of traction or mobility in my life has been a result of my disability and societal condition, the re-evaluation of my disability, or a lack of direction. My parents often said to me over the last nine months that I change direction every other month. This statement only has some merit. 
       As I've said before, until about eleven months ago, I had my life planned out. I would be a teacher first in public school then eventually at the college level, but life threw me a curveball, which throws people often. I didn't think it was going to be an identity crisis curveball, though. I finally realized that my passion and my drive didn't equal out to my situation or opportunities. Why was this?
       That is the question that I have been struggling with for days upon days since the last "hardcore" conversation I had with my mom. She keeps saying that because of a certain event, our circumstances have changed. Which they have…but does that mean my passion has changed? No. If anything else, the last year's fragility has made me realize that they must go for it if one wants something before they do not have the opportunity anymore. This philosophy is what drives me. I guess it has always driven me. That is why I've been at odds with so many people in my life. They have their preconceived notions of what I should do because of my societal limitations, and I look at them and feel that way does not work for me. It should work for anybody in a chair.  
       Many people with disabilities settle into what they think they're supposed to be as a person with a disability. For example, people in manual chairs often won't date people with power chairs and vice versa because society thinks that it is a natural fit for us. That is the only form of companionship that is "normal" or "natural." For some, I can see why they choose that route. However, my eventual life choice will not be just based on whether or not they have a disability. If they do, then they do. Suppose they don't, then they don't. This brings me back to my main point. 
       As I finish my third degree, which will eventually be "useless," I am at another crucial transition period in my life. The small town in which I live has served its purpose. It's too damn cold, and it's a transient town. All my friends that I've made here have come and gone, minus a few who I think will be here forever. As I wrap up my career for now anyway, I have to decide on where to live. 
       My parents wish for me to live close to them so that I can visit on holidays and family occasions, and so that I will be in a little safe bubble in case anything happens. I agree with the first point—I would love to be close to family, but the second point is what drives me away the most. I've always been a go-against-the-grain-type person. I have ever had to do things in a non-easy way. Not the hard way, but if there's a challenge involved, I have to take it. I see no reason why I should be limited to geographically because of my disability. Society and those around me say otherwise. This is another crucial issue that disabled people need to be vocal about. No, not the geographic location in particular, but instead is allowed to nurture our spirit for what we want it to be. Not what others think it should be. 

The Identity Crisis

 

“On the one hand, she was viscerally aware of what polio had done to her body and of the day-to-day realities of living with a disability. But she was also aware of what she called “a gentleman’s agreement” at home and at school to pretend that her disability didn’t exist.” 

       This is a quote from chapter 1 of Fred Pelka’s book What We Have Done: An Oral History of the Disability Rights Movements. This particular quote is a part of the Childhood chapter, and he’s introducing Corbett O’ Toole. In the pages following this quote, Corbett O’ Toole’s interview describes a fundamental problem still relevant in society today--that of identity. 
       As we progress from childhood into adulthood, we struggle to find our identity. We strive to no longer be perceived as so-and-so’s child but rather our independent person. This is no different, no matter your race, religion, sexual orientation, or gender. However, when one has a disability, the identity struggle is often internal. 
       What is the nature of the internal that disabled people face? Apart from dealing with all the obstacles that any teenager or adult deals with, people with disabilities often struggle with what I like to term the “okay with it” or “not okay with it” question. When I say that there are two sides to a disability, I’m speaking from personal experience. No, I am not referring to born with vs. acquiring your disability in later life. In this case, I am referring to accepting your disability for what it is or wanting it to be something different. This is a pervasive struggle throughout the disability community, but not many people with disabilities are willing to discuss the inner battle that occurs. Sometimes daily, this battle happens. I present here a little bit of my struggle with the question of identity. 
       I know what it is like to have a disability, but I do not know what it is like to have a child with a disability. So I cannot imagine what it would be like to raise that child. That being said, it makes complete sense that the stigma about disability is arraigned from childhood. If I were not familiar with disability, I would see it as a “bad” thing. Also, if I had never been exposed to it, as Pelka puts it, “The idea that disability is a taint, a statement about the inherent worth or character of the person with the disability, works itself out most painfully on children with disabilities who absorb, often without knowing, this prevalent but generally unspoken judgment.” (Page 30). I can say that this is true in my life, as well. The earliest memory I had was taking a ride with my mother and maternal grandfather on the way to physical therapy and falling out of the car. My mom was a therapy drill sergeant when I was a kid, and to her credit, I thank her for that. It was her belief and mine at the time that therapy would improve my condition. I believe that the treatment will help me maintain my condition, but it will not improve it. If it wasn’t for my mother taping my hands open to the playpen while I was standing, I don’t know if I would have the sense of humor I do and my ability. Her practices reflected an essential belief about disability. There is one school of thought, as Pelka puts it that, that the belief the person with the disability needs to be “cured” and “made whole.” (Page 8). My mother is easily stressed, but she is one of the sweetest people I know. She will bend over backward for anybody, but when it comes to disability, I still believe (like all of us) she has a lot to learn.
       It was ingrained in me as a child that appearance was vital. To some extent, I agree with that philosophy, but on some levels, I am sure unintentionally, it came off as treating my disability as if it wasn’t there. All that being said, I am very grateful for my parents for the support they have given me throughout all of the years—including the struggle with my identity that I am about to discuss. 
       When I was fifteen until I was about twenty, I can safely say that my parents and I didn’t get along at all. Back then, I thought it was because they didn’t understand me; they didn’t know anything or some teenage notion like that. I’ve since come to discover that our fighting was a result of something much more profound. The fight that occurred between us was a result of me not being comfortable with whom I was. Therefore, being able to stand up for my own identity. This does not mean I was not pleased with the sarcastic smiling kid I was—no, the discomfort occurred on a much deeper level. I was not comfortable with who I was as far as my disability. I would often get into fights with my mom over therapy, simple tasks like shaving, or “keeping up my face,” as she termed, trying to control the acne that would break out. What I was fighting about was the ability to control my own life. Some of you that might read this will say that this is a typical fight between a teenage child and a parent, but nothing is typical when the parent is also your caregiver. Typical goes out of the window. Not only was I fighting the hormone storm that was raging in my body known as puberty, but I was also fighting with the two people that I loved the most. Because we had never been put in a situation like this before. I mean, they had never raised a child with a disability, and they were only doing what they thought was best. For my part in those fights, I sincerely apologize. They say hindsight is 20/20. How true that expression holds in this instance. 
       Apart from the fighting with my parents—from the time I was twenty to about twenty-two, I had a hard time dealing with the social stigmas and pressures that came with disability. Without going into detail, I can suffice to say that I did not handle those pressures very well. After several years I thought I was all right, and things were on the upswing. Until fairly recently, when I discovered the underlying cause for most of my identity problems. 
       Because I had always believed that I could do anything despite my disability, whether rightly or wrongly, it would come back to haunt me. I am not saying that people with disabilities should be limited but should be aware that though it is unjust and not fair—society puts limitations on them. Recently, I came into a crisis with my school and what I had planned for my life. Those around me and those who know me well know that I am mentally capable of whatever an average person can do. However, if I am not given specific accommodations physically, I am at the mercy of others. This holds in the realm of everyday life to pursuing dreams of education and employment. Although I believed that I could be a productive teacher in the classroom, I came up against my first real sense of resistance in life. I’ve always been told by a good friend of mine (who is no longer with us) that I can do anything if I put my mind to it. Sadly, while in an ideal world, this may be true, but it is not reality when you have such obvious obstacles to overcome as I do. Without someone in a position of power supporting people with disabilities in their chosen aspirations, desire can only take it so far; hence, why society needs to develop a greater understanding of disability. Once a company develops that more excellent knowledge, then more allies for the disabled will emerge. More barriers that we, as a community, face on an everyday basis will be thrown aside. 
       

Footnotes: 
Pelka, F. (2012). What We Have Done: An Oral History of the Disability Rights Movement.

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.