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. 

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 

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. 

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/

A Secret World: Autism Misunderstood

Today I was looking to expand the blog’s reach. To do so, I 
I was trying to find an old video I posted on Facebook about Autism. Unfortunately, I couldn’t find it; however, I did stumble upon Carly. Carly is a girl with Autism. She inspired me to research the disorder more accurately, should I say the spectrum of disorders. I have friends with Aspergers, a high functioning form of Autism, but like many others, I had preconceived notions about Autism before begetting my research. Let me start by explaining a little bit about Carly’s story.

 

Carly

 

The video¹I found might be old, but in the video, ABC news covers a story about a 14-year-old girl with Autism in Toronto, Canada. Her name is Carly. When I clicked on the video, I thought that she would be your typical kid with Autism. Boy, was I wrong? This girl is amazing. At first, my suspicions were confirmed, but as I watched further, something happened; she opened my eyes to a whole new world. Now I understand why people want to work with autistic children. They are so smart and have so much to teach us. It is just that we have not found a way to unlock the keys to their secret world at this point.

 

Carly did not communicate a word until she was 11. Then one day, she ran to a computer and typed one name, hurt. A couple of days later, or I might have gotten the timeline wrong, she ordered help but then was prompted to finish the word, and she added a p. It took time, but with the help of numerous therapists, Carly could find her voice. She now has a blog where readers can follow her story and get updates about Carly and autism². 

 

 

Hollywood Myth

 

Carly’s story inspired me to do further research, and I came across several interesting things. The first of which is a startling number of stereotypes of Austin. These stereotypes about Autism are often perpetuated in mainstream society in popular formats such as the silver screen. A well-known movie was produced in 1988, which had two popular actors and discussed Autism. It was called Rain Man, and it was produced by the Guber-Peters Company³. The movie starred Dustin Hoffman and Tom Cruise. To give a short synopsis of the movie, Charlie Babbit kidnaps his Autistic brother from a facility after learning that he has been given the majority of the family inheritance. The film portrays Dustin Hoffman’s character “Rain Man” as an Autistic Savant. He can remember numbers extremely well and sticks very near to a schedule. While it is true that some  Autistic people are savants, according to Care2.com, this portion of Autism is highly less prevalent than the movie suggests. Many people with Autism have learning difficulties and need help when it comes to an educational setting⁴.

The Truth About Autism

 

Since I have discussed the Hollywood about Autism above, I feel it is appropriate to outline the basic facts of Autism here. Autism is much like Muscular Dystrophy. Autism does not refer to precisely one disorder; instead, it refers to a group of disorders. Therefore, to be more accurate, there is not a disability known as Autism, rather disabilities along the Autism Spectrum, hence the term Autism Spectrum Disorder. ASDs are not disorders that can be scientifically diagnosed. However, according to the National Institute of Neurological Disorders and Stroke (NINDS)⁵, there are seven early signs of Autism. They are no babbling or pointing by age 1, no single words by 16 months or two-word phrases by age 2, no response to name, loss of language or social skills, poor eye contact, excessive lining up of toys or objects, no smiling or social responsiveness. However, if your child does not exhibit these early signs, there are still later disorder indicators. They include impaired social interaction or imagination capabilities and language deficiencies, such as the repetitive use of language. Autistic children also tend to be very ritualistic individuals, but it does not necessarily exhibit this behavior. 

 

Now that the primary signs of Autism have been discussed, it is essential to discuss Autism diagnosis. This is a two-step process in most cases. The first signs of Autism or an ASD are usually detected by a pediatrician or other childhood doctor with light screening methods. If a child is thought to have an ASD, then the second stage of screening can begin. This screening stage is more complex and involves a team of individuals, not just one specific doctor. Although "While you may be concerned about labeling your young child with ASD, the earlier the disorder is diagnosed, the sooner specific interventions may begin. Early intervention can reduce or prevent the more severe disabilities associated with ASD. Early intervention may also improve your child's IQ, language, and everyday functional skills, also called adaptive behavior.”⁶  The team usually includes individuals from numerous disciplines, including psychologists, neurologists, speech pathologists, and/or pediatricians⁵. When individuals are diagnosed with Autism, they are usually broken into three groups: classic Autism, Aspbergers, and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). The distinction is usually based on an individual’s language skills. Those with highly developed language skills who exhibit signs of Autism are usually classified as having Aspbergers. It is often true, but not always, when an individual with Aspbergers will specialize in a particular subject. As with all Autistic disorders, individuals with Aspbergers struggle in social situations. Another group can be classified as PDD-NOS. This is used as a “catch-all” label for all children who exhibit some Autistic behaviors, but not enough to fit either the diagnosis of classic Autism or Aspbergers. A final, rare group can be diagnosed as having Childhood Disintegrative Disorder. These children develop normally until somewhere between the ages of three and ten, starting to establish Autistic behaviors. All three of these groups are Autistic, but all three of these groups are also not well understood. There are common stereotypes of Autism that need to be debunked. 

 

There are several common misconceptions when it comes to ASD. The most common misconception is that people who are autistic have trouble making friends. This, however, is far from the truth. Autistic people may struggle in certain social situations, but that does not limit them from maintaining friendships and other relationships with their peers. What often limits this is a misunderstanding of difference. Autistic people are just like you and me except that they express themselves in different ways. If we want to change the way people view Autism, we must increase autism awareness and knowledge⁷.

Another common misconception is that autistic people lack empathy; however, this is far from the truth, intact the extreme opposite is often true. Many people with Autism often feel too much empathy and get overwhelmed by the people around them. Perhaps the empathy problem can be better understood if the people who interact with autistic individuals are more patient and change how they present stimuli to autistic people.

Communication in today's society is crucial; if one does not know how to communicate, their ideas can be lost on those around them; however, verbal communication is not the only way contact occurs. A large portion of communication comes from body language and other methods. This principle also applies to the autistic community. If people wish to understand Autism as a whole better, they must realize that traditional communication methods are not always possible or feasible. For example, some individuals with Autism remain non-verbal or a large portion of their lives, i.e., Carly; however, this does not mean they have nothing to say; they are human with wants, feelings, desires, and dreams. Autism, just like disability, in general, is given a negative reputation by society simply because people do not know how to unlock the secret world of Autism. in other words, I believe that Autism is not a disability. Instead, it is a reflection of society's inability to think outside the box. Autistic people may be some of the smartest individuals gods created, and it may be a society behind in the times⁷. 

 

Autism is highly prevalent in the U.S. however; it is not only an American problem. The following graph shows that Autism is a growing problem worldwide and needs to be better understood as a whole. Such organizations as Autism Speaks⁹ and others do a great job of promoting Autism research and Autism awareness. Still, through word of mouth and further knowledge, the world of Autism will one day no longer be a mystery.

 

 

 

COUNTRY China	NUMBER 1,100,000	DATA SOURCE Peking Health Science Center (estimate based on official 2005 rate of 1.1 in 1000 children affected)
India	2,000,000	Action for Autism India (based on an estimated rate of 1 in 250)
United States	1,500,000	U.S. Centers for Disease Control and Prevention ADDME Study 2007 and Autism Society of America
United Kingdom	650,000	National Autistic Society 2006 (based on the rate of 1 in 100)
Mexico	150,000	Based on estimates by the Ministry of Health of 2 to 6 per 1000
Philippines	500,000	Autism Society of the Philippines
Thailand	180,000	An estimate of the Minister of Mental Health 8

 

 

 

Footnotes 

1.https://www.youtube.com/watch?v=oa3X4ASf0wA
2. http://carlyvoice.com/home/ 
3. imdb.com
4. Care2.com
5. http://www.ninds.nih.gov/disorders/autism/detail_autism.htm
6. http://www.nimh.nih.gov/health/publications/a-parents-guide-to-autism-spectrum-disorder/what-is-autism-spectrum-disorder-asd.shtml 
7. http://www.care2.com/causes/dubunking-7-common-myths-about-autism.html#lxzz2SjFo0bOY

Eight .https://www.youtube.com/watch?v=oa3X4ASf0wA9. autismspeaks.org 

 

It’s Like We Want Our Cake and We Want to Eat it too Without Having to Work For It. Sorry, Life Doesn’t Work That Way!

A disturbing trend inspired me to write this blog. Please note: This blog may offend some of my disabled community, but that is not my goal! The goal is to express the idea that we are a minority that claims to be treated equally, but we cut corners more often than not. Because we cut corners, two things have occurred. People view us with unnecessary sympathy, and people end up taking advantage of disabilities. 

Let me first explain how this blog idea came to mind. I watched The Tonight Show earlier this week. Jay Leno mentioned the following in this monologue; Recently, out of Florida, black market disabled people have been hired to help people skip lines. Initially, I thought it was a story that Jay was making up for a good laugh because it got one. However, upon further research, I found it to be true. Several articles have been written about the issue. Two of which are going to be footnoted below. This blog will address that, but it will also address much more critical issues. 

First off, I think it is rather funny that people are such in a rush to hear, “It’s a small world after all...” sung to you over and over again that they would be willing to give up more of their hard owned money to a disabled person to use the sympathy that society offers them. I mean, really?! How much would it hurt to learn some patience? I mean, yes, these lines are pretty long...but the ride’s not going anywhere! All they are losing out on is their hard-earned money. If you don’t spend enough money at Disney world or places like that in general, why must you need a reason to shove unnecessary money?

Enough about that, and now down to the nitty-gritty of this blog. I am a disabled individual. I have Cerebral Palsy, and I use a motorized wheelchair. So I am privileged enough to skip the lines at amusement parks, airports, and other places. For a while, most of my life, I thought nothing of it. After this recent scandal, I got to thinking. Was Carlos Mencia, right? Carlos is a Mexican American Comedian who makes fun of every individual shamelessly for those who don't know. I am a huge, standup comedy fan. People sometimes tell me I should be a sit-down comedian.

I try, but my speech issues often get in the way. I still make people laugh hysterically with my lobster jokes, etc. Anyway, back to my point. In one of Mencia’s bits (please see the link http://www.youtube.com/watch?v=jQawDUmcdCQ it is hilarious and politically incorrect but it is fantastic, listen to the disabled kids' response to him), he comments about being behind a handicapped individual as he called them, and thinking to himself but not having the guts to say, why do handicapped people get to skip the lines? He was specifically referring to those who were in motorized wheelchairs or scooters. He did not have any beef with those on sticks or crutches. I thought it was hilarious at the time. I laughed my ass off, and people around me didn’t understand why. Let me explain.

Mencia may have a point. Just because we are disabled, do we deserve special treatment? I mean, to be honest, we are sitting on a chair. Our feet do not hurt from standing in line for hours. Do you know who should get to skip the lines? The 80-year-old grandparents with their grandchildren who can barely stand but do it anyway. Not I who has never stood without help a day in my life. Because oh my goodness, what if my finger gets tired from sitting in a 45-minute line? Now some may argue that they are doing it to make it easier for our caregivers and us. To this point, it might be easier to give caregivers more space on and off rides, but what does this have to do with skipping ahead of the 45 other people that paid the same price I did to get in? This principle can also be seen in other places. 

Just the other day at Wal-Mart, I saw an individual, no lie, steal one of those in-store scooters because they did not feel like walking. To put it politely, this person was significantly overweight. I know they were not disabled because I followed them and watched them get out of the scooter to reach on the top shelf to grab a large container of...wait for it...wait for it...OREOS! ...OREOS! This situation got me thinking also. No one ever calls disabled people out on anything because they are afraid to offend them. Like we are some fragile human being that cannot be told off or corrected. Our non-disabled people, and this is an honest question, so afraid of our difference that they fear being shunned by the rest of their peers if they call us out? For being obnoxious or inappropriate behavior? Let me give you an example. I go to college, as I’ve said before, with a large population of disabled people. A majority of these disabled people do not walk around with chips on their shoulders. However, a large portion does and walk around as if they own the university. They will run non-disabled people off the sidewalk. It’s probably happened to you, and none of the non-disabled people say anything to the disabled person. They can be heard muttering to their friends, though. 

What do all these examples have in common? Disabled people come in two varieties, so I’ve found it. Those individuals that are okay with their individuals and those who are bitter about them and use their disabilities to their advantage, i.e., they will skip the line in Disney World. Still, they will complain if not treated equally in the next minute. If we want to be treated equally and taken seriously as a group, we cannot pick and choose what areas of life we are treated equally. You may see skipping the line at Disney World not as a big issue but in places like this that we forcibly set ourselves apart from others. Either we want to step in line with the rest of society or have no problem outside the community, along with having our impressive entrance to the ride. We can’t have it both ways. It is almost like we cannot reach exceptionally far, but it’s almost like we enjoy the special seating we get in life. If you ask any minority, who has fought for equal rights, they will all tell you they never want special seating. They fought t sit among everyone else. Not apart from them.



Footnotes: 
1.) http://b1027.com/wealthy-hiring-disabled-to-cut-lines-at-disney/

2.) http://www.huffingtonpost.com/2013/05/14/skipping-lines-at-disney_n_3275836.html

Supposed Hero: Not Really, I’m Just Rolling with the Punches--Literally Rolling

So this blog will have no footnotes, no scholarly research. It comes about as a result of the conversation I had today. While enjoying the sunny weather, let me first say that even in Edinboro, Pennsylvania, sunny days are rare in the summer. It is nearly the latter half of May, and we just had snow a couple of weeks ago. So when it is sunny out, I must take the opportunity to enjoy the weather. I was doing so earlier today when a not very unique occurrence happened. 

I met this gentleman named Dan. He was fishing for bluegill in a very muddy Edinboro lake. He was overall a nice gentleman, and we chatted about the outdoors and hunting, feeling in particular. Then we got more into detail about what people do. He asked me where I live, and I told him that I live in an apartment building right up to the street. He then asked me if I was from the area. I responded with, “Hell no! I hate cold weather! I’m originally from Florida but grew up in North Carolina and Maryland.” As most do when I respond that way to that particular question, he gave the following reply, “Then what brings you up here?” I said, “School.” We then discussed how the Edinboro University of Pennsylvania is one of two schools left in the country that provides personal care 24/7 in some capacity. I explained that I don’t use personal care services anymore because I live off-campus, but they help. 

Dan then asked me what I was going to school for. When I told him that I was getting my Master’s Degree, he started a familiar path. He said, “You are so great for what you’ve gone through” compliment. I know that this is not meant to be patronizing and that many non-disabled people could not imagine being in a disabled person’s shoes, but it gets frustrating after a while. For those who are not understanding, I am not downplaying what I’ve done or achieved. I am merely downplaying the role that my disability has played in it. To put it another way, people compliment persons with disabilities for everyday acts like they have done something extraordinary. That would be the same as me going up to a person and approving every time they tied their shoes properly, which some of my friends still have trouble with. 

The compliment is well-intended, but the able-bodied community does not realize that most disabled people do not see disabilities as a disability. They see it as a label that they must overcome. There are hundreds, perhaps even thousands of disabled people that can contribute to society. Fewer are given a chance. Those of us who are granted the equal great opportunity wanted to be that--an equal opportunity. Our accomplishments are made no more significant by the fact that we have a disability. People who may read this may disagree. They might say that I or persons in my situation have greater obstacles to work over everyday pieces. Is my argument, don’t we all? In this case, a basketball player friend of mine will call Lucy an outstanding basketball player. She has just received a contract to play overseas. Which I am very proud of her for. However, many pressure and no varieties put on this individual because she’s tall and overcame cancer. This individual, who is a great person, does not see her overcoming cancer as something special. She sees it as a blessing, and it has given her perspective and has it be her obstacle. It is no different than the single mom going to school with four kids who work for me as an attendant. She has barriers, as well. However, when you are disabled, they no longer become obstacles. They are significant hurdles. My ability to overcome them is no different than my friend Lucy’s or my friend, who works for me. Those of us who are given obstacles in life is given them because we are strong enough to overcome them, and we are meant to overcome them because we are told to test ourselves. Perhaps for something more significant and not to be praised as if we are better than everyone else. 

My point in closing is that everyone has obstacles, whether financially, physically, mentally, spiritually, or other types of hardships. I hope this blog does not sound arrogant or ungrateful because that is my not intention at all. It is merely to show that just because disabled people’s obstacles are sometimes visible, it does not make them any greater or less than anyone else’s obstacles. Blocks are put in place to make us who we are meant to be and not make us stand out as something extraordinary. If we do, that should be by our own doing and not by an obstacle put in front of us. We have no control over.