Disability Is A Mindset Not A Diagnosis

Your friendly neighborhood super advocate is back! Since I last posted a lot of things have happened in terms of disability related issues and content. This post is the first of several posts to come. They will discuss a wide variety of topics including dating and relationships as well as finances and the low expectations society still has for people with disabilities. 

Today’s post will highlight a recent encounter that I had at Wal-Mart. The encounter reinforces the idea that there is still a narrow view of disability in society. Let me set the scene.  

As I often do, I was shopping at my local Wal-Mart a couple weeks ago. Most of the time I go in to the store with my caregiver or I pick up the groceries I have preordered. On this day, I did not go in, instead I decided since I only had a few things to pick up I would have my caregiver run in for me. As most of you know, I currently live in Florida. The weather in Florida often fluctuates between warm and extremely hot in the spring and summer. Rather than waste gas and run the car, my aide and I decided that she would leave the windows down for me. Wal-Mart must have been particularly crowded on this day because it took longer than usual.

While I was listening to music and waiting for my caregiver, an African American gentleman stopped one of the Wal Mart employees who was gathering carts in the parking lot and loudly made the following comment while pointing at my van. “Look at that autistic kid. I don’t think he knows they left him in the car. This is abuse. You should call the cops. It is too f-ing hot”. As this interaction was taking place my first thought was to react with anger. I actually said out loud I do not have fucking autism”. I then thought to myself why are you getting angry? This is typical. After a few seconds I realized if the guy came over, I could use his comment as a teaching moment. Eventually he did approach the vehicle, and proceeded to ask me in a patronizing way if I was okay. Before I responded I took a few seconds to compose myself. 

After reassuring the gentleman that I indeed was okay, I proceeded to inform him that I did not have autism and not all people with disabilities are autistic. He must have been taken aback by my response because all he said was “Oh, glad you are okay. Have a good day”. Once my caregiver got back in the car, I told her the story and we immediately started laughing about it. It was not until later when I told my girlfriend who has the same disability that I do, that she suggested I write this blog. The reason I took a couple weeks to write this blog was because I was having trouble figuring out whether there was a larger lesson that I could expand upon because of this encounter. It was not until last Sunday that the lesson became clear. 

I had not thought about the ignorant comment for a few weeks, and it did not enter my mind until a different caregiver of mine was having a conversation with his friends, and they were surprised that people with disabilities could go bowling. The two incidents made me realize that there is a larger concept that most of the able-bodied community does not yet grasp.

Even though we are in the third decade of the 21st Century and a lot of improvement has been made in the lives of people with disabilities, there is still a level of ignorance and lack of awareness when it comes to disability throughout mainstream society. People either patronize people with disabilities or assume certain things about people with disabilities instead of getting to know us as individuals. If we are ever going to change this, people with disabilities need to be more assertive and this may be controversial but stop feeding into the idea that the majority of society holds.  Most of the able-bodied community assumes that disability equals low expectations. The disabled community further perpetuates this idea when they don’t have high expectations for themselves or each other. 

The statements made in this blog reflect my own beliefs and do not reflect the beliefs of any other individual with a disability. I am not sure how the disabled community will react to this blog as a whole, but it is my hope that all who read this blog will be left with something to think about. People should be judged by what they do, and the impact they make on the world. It is up to all of us to not only be good people but not give others a reason to look down upon us regardless of whether or not we have a disability.

I know this post is longer than usual but I believe it was necessary and just the right length. 

‘Til next time, your friendly neighborhood super advocate,

Jay 

All We Want is Opportunity: We are Not Asking for Special Treatment

It's funny how to blog ideas come into my head. For those of you who have been following the blog, you will notice that I haven't written in a while. Sometimes, as a writer, you find that there are words inside you that you cannot even know needed to be put to paper until a series of events occur. For me, this blog came about because of three things: A conversation with my friend Josh, who is about to graduate, on how difficult growing up and preparing for the real world is, the fact that I just applied for my first "big boy" internship/ job and finally an article on Autism. One may ask, what do these three things have in common? By the end of reading this, hopefully, this will be clear.

         As a person with a disability, there are always obstacles in front of you, whether your disability is hidden or visible. Some of these obstacles are bigger than others; some relate to social situations, while some relate to other aspects of life. That being said, no matter what one's disability is, I believe that we all encounter tremendous obstacles in the job market. Currently, in the U.S, according to Disabledinaction.org, there are approximately 51.2 million Americans that have some level of disability. Also, according to this website, 32.5 million Americans have a severe disability. If we subtract the number of children, which is 4 million ages 6-14, we can safely estimate that 47.2 million disabled Americans can feasibly work. I know that this seems like a lot of statistics and that I am evaluating here, but if we note an approximate unemployment rate of 13.7% according to Disabled World that equals 6.6 million people with disabilities who are unemployed. This does not seem like a large number, but it is double the unemployment rate compared to the general population. The question must be raised, what is the cause of this?

         Although I am young and have little experience in the workforce, when someone tells me that people with disabilities at 13.7% are twice as likely as non-disabled people to be unemployed, something is alarming. The non-disabled rate of unemployment is 6.7% of the able-bodied population. This is according to the Bureau of Labor Statistics. What causes the discrepancy? Is it because people with disabilities are not qualified? Do they not have the higher education necessary to succeed? The answer is that they do, but it is societal barriers and perceptions that have caused this significant gap in unemployment. 

         As a disabled population, we have benefited from legislation such as the Americans with Disabilities Act of 1990, and IDEA (Indivuals with Disabilities Education Act), whose latest manifestation was 2004. However, these pieces of legislation can only go so far. If people are unwilling to look past the disability, whether it be intellectual, physical, or otherwise, all parties involved will suffer. There is hope, however.

         One company, in particular, is focusing on a specific segment of the disabled population.  SAP, an international computer and technology company, leads the way in something that should have already been a long time coming. SAP recognizes that people with disabilities have unique gifts. To quote the article, they do not see hiring people with disabilities as "charitable outreach" but rather as a "smart business decision."  SAP is explicitly focusing on individuals with Autism and Aspergers, as they, for the most part, have greater attention to detail than others. The company is not cutting corners when they hire individuals with Autism. The individuals undergo a rigorous screening process to see if they fit in with the company and community. Autistic employees must have the same level of higher education as all other employees, so no special favors are given.        

         This company's unique approach got me thinking. While I am encouraged that this company is taking a significant step to improve people's lives with disabilities, it also saddens me that it has taken for this to happen.  I have been a victim of the negative view of disabilities in employment and pursuit of advancement. Although they are a terrific institution in general, the school from I received my master's degree in education did not see my disability as a positive when it came to student teaching. Instead, they focused on the negative and all parties involved suffered. I was able to complete my master's degree but did not gain the necessary experience to the student; therefore, I am still unemployable.

         It is clear that having a disability, no matter what it is, is an obstacle that a person has to overcome. The workforce may often be a challenge for people with disabilities. Still, because of companies like SAP and their unique view on autistic employees, there may be a light at the end of the tunnel when it comes to disabilities and employment. SAP is leading the way and breaking down barriers when it comes to working. Other organizations and institutions should use SAP as a clear example when addressing individuals with disabilities. Just because we are different in one way or another does not mean we are less capable. We are only less capable if not allowed to prove ourselves as individuals.

         Recently, I have applied to my first "big boy" job with an online newspaper, and they are in the process of reviewing my resume and qualifications. At no point in time did this company look down on my disability as a negative. In fact, in some aspects, they have indicated that it may be optimistic. It is unclear whether I will get the job, but that is not my point for mentioning it. If disabled people are given opportunities to prove themselves just like everyone else, it is amazing what society will find, and what resources they will tap into. 

Footnotes

1. http://www.bls.gov/news.release/empsit.nr0.htm

2. http://www.disabledinaction.org/census_stats.html

3. http://www.disabled-world.com/disability/statistics/twice.php

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