Monday, September 30, 2013

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. 

 

 


Wednesday, September 4, 2013

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.