Goodbye to the Funny Man

 I suffer many trials and tribulations like everyone else. My physical disability is an apparent battle that I struggle with. However, other battles aren't quite as obvious. Recently, the well-known actor Robin Williams took his own life because he battled depression. This is a disease, which I battle as well. The stigma of depression is overwhelming sometimes. If one finds out you suffer from depression, they look at you negatively. There are more negative consequences of depression in my estimation than with being obese or having afflictions.

            With Robin Williams's death, I was set back. It shocked me that someone with such a promise and an appreciation for humor like myself, could not fight his demons anymore. It got me thinking, and to be honest, it got me questioning myself. I often wonder if I am strong enough to battle this internal struggle that I deal with every day. Hopefully, with Mr. Williams's death, people begin to realize that depression isn't something we can take lightly anymore. Mental health, in general, in this country, is not given the attention it deserves. Hopefully, with this tragedy, more attention will be paid to depression, immensely, and mental health in general.   If something does not change soon with the way society views mental health, tragedy will continue to occur.

            Those close to me know that I suffer from depression, but only those who also suffer from depression can understand what it is like every day. Some days, the pain is so great it is like nothing you have ever felt before. There are other days that you are happier than you have ever been to. It is a delicate balance between the two; what works for me does not necessarily for everyone. The tricky part of depression is that it is unique to every individual. Its cure is not found in a medical book. Its symptoms are not obvious, and it is not often talked about. Some of you who read this may wonder why I am disclosing that I suffer from this disease. The answer is quite simple. The stigma of depression needs to be broken. More people need to talk about what is going on inside their heads rather than just pretending like it's not there. If we do not change our view of depression, what happened to Mr. Williams will happen again. Mr. Robin Williams, you will forever be missed, and you were one of my favorite people.

 

The AWWW Moment

Today is America’s birthday. I live in the best country in the world. Whether you are liberal or conservative, Republican or Democrat, we all have opportunities in this country. However, just because we live in the greatest country in the world, it doesn’t mean that people don’t often surprise me. I do have all the opportunity in the world. My disability anywhere else would be 10 times more magnified then it is. I am grateful that I was born where I was, but sometimes I wonder about people. As most of you know I am 27 years old and I have a master degree in education, but that piece of paper doesn’t mean much to my social disability. Yesterday, I was out in Erie at a movie, and I got the following reaction from a lady in her mid to late 40’s. She saw me and my caregiver and her immediate response was awwww. To this moment I still don’t know what that meant, but it made me think.. Just because I have a physical disability doesn’t mean that I have a mental one, but apparently you cannot change everyone. As I celebrate this 4^th of July weekend, I am grateful for what America has become, but I still know that America has a long way to go when it comes to treating disabled citizens like everyone else, because apparently I am 27 and look like I have a mental disability. I didn’t know that going to a movie with a caregiver automatically made you have a mental disability. I am not saying that having a mental disability is a bad thing, because I know people with them who are great people. They just struggle in certain areas. What I am saying is that I hate being grouped in one large category with certain stereotypes, but there are certain things about the world and America that need to change. The question is: Will it change in my lifetime? I am hopeful that the answer is yes, but I am not expecting it to.

---

 [jh1]

Just A Few Questions

What is it to be disabled? Disability is a label that society puts on you, but this label has preconceived notions that come with it. This label often causes others to view the one with a disability as something less than human. However, there is more to disability than just a label. A recent situation that has come up regarding my disability has inspired me to write this blog.

            As many of you know, I have Cerebral Palsy. Due to the Cerebral Palsy, I require aide care. In a book that I am in the process of publishing, I describe my journey through grad school and the aide care system. However, the aide care system needs a wake-up call. Recently, I have switched to an agency model of care. I am aware that this is a different type of care system, in that I do not hire my employees anymore. However, lately, I feel like a pawn in the aide care system chess game.

            When I accepted this agency to take over my care management, I was made specific promises. Before I get into them, I must say that I am aware of my extreme reliance on other people. That being said, the aide care agency promised me that I would have a consistent team of care providers who were familiar with somebody with my level of care needs. That has not been the case. The exact opposite has occurred. I feel like I am in that annoying little shell game; you see people play on the boardwalk. You never know where the marble is going to be. I never know who will end up at my house, but that is not the worst part of it, and that is not what inspired me to write this blog. That is just a little backstory.

            What burns me up is an incident that occurred yesterday. They sent me an individual who I have had issues with in the past. This individual is supposedly a certified CAN, but she did not act like it. She was very uncomfortable with the job's duties, such as taking me to the bathroom and whipping my butt. Even something as simple as feeding me was a problem. I have reported this to the agency before but yesterday was extremely bad. To top it all off, the agency is a "no lift" agency. This means that their employees are not allowed to lift me, which is fine, because I have what is known as a Hoyer lift.  The lift allows the user to hook me up with a sling and then pump me up into the air to lift me in the chair to my bed or wherever. How can an agency be a no lift agency and not train their employees to use the required equipment? Just a thought.

            When I bring this point up to the agency, they reply that all employees are trained on the equipment. Cleary yesterday was an example that they were not. This brings up a more significant issue in the aide care game. Why do agencies false advertise to get consumers in their payroll?  I am used to aides switching constantly, but it makes me wonder about people nowadays when numerous people promised me.  Why make a promise you have no intention of keeping or unable to keep to make yourself sound better? Good intentions are great, but they don't get you very far in the aide care game. It is time to stop dealing with false promises but deals in realities. There should be a better screening process for aide selection and agencies, mine and others should not promise things they cannot or will not deliver. 

Sad Times At KFC

            What a disgrace! These are the first three words that came to mind when I read an article on the social media giant known as Facebook recently. The report detailed how KFC, a chicken place famous in the U.S. A turned a little girl away because Pit bulls had recently mauled her. According to the article, "She has turned out because other patrons may be scared by her face and injuries. The link to the full report can be found at the end of this post.

            When I first read this, I couldn't believe that it could be true. However, since I read the article in the day and a half, I have read other people's posts about the incident, which leaves me to believe that it is true. Not only do I feel bad for the little girl who is most likely going to have psychological damage for a long time, but I feel bad for society.

            It is 2014, and we still have people who hold archaic views on the difference. I get that KFC cannot control their employees' attitudes, but I sincerely hope that the employee who said this was fired. Since then, KFC has offered to pay 30,000 dollars towards the girl's medical bills. It's sad to think that this is just a PR move, but that is honestly what I believe. In my opinion, KFC is not doing because it is the right thing to do to fix the injustice done, but they are doing it save face.

            What kind of country have we become that in 2014, the difference is still looked upon individually so negatively. No, the girl did not have a permanent disability, but she does have a temporary one. This is why I write about the article here. The KFC incident reinforces my idea that disability is not physical and mental, but social. Let me explain.

When someone is classified with a physical disability, in society, that is, it means they are a lower class of citizen. What it means, though, is that they do things a little differently. Their physical differences do not limit them except in very few tasks. What limits them the most is society's perception of what they should be able to do. The KFC individual has such an archaic view of disability that he could not even think before imposing social restrictions and barriers on the little girl. However, an incident like this is not isolated. It reminds me of an experience in a movie called The Music Within. The film is about the development of the Americans with Disabilities Act. In the film, the lead character, a disabled man, is turned away from a North West restaurant because of how he eats pancakes. In that movie, the incident occurred before the Americans with Disabilities Act was made into law, and it showed that people in that era were not accepting of difference. My question is: how long before that era is over?

 

http://www.people.com/article/kfc-pays-medical-bills-girl-pitbull-att

I don’t want the destiny you have planned for me: I’ll make my own. Thank You!

It's been a long time since I have written, but I recently watched a video that got me thinking. The video is linked below. I have shared it tons of times since I have watched it. In it, the speaker Stella Young brings up an idea of something called inspiration porn.

            She says that the lie that has been perpetrated is more social than physical. I could not agree with her more when I posted the following status "No, I am Not an inspiration for getting my Master's degree and having a disability. No, I am Not an inspiration for getting out of bed every day. Having a disability doesn't make me inspiration, just food for thought." I got a mix back of responses. Some did not understand my point for posting the status, my point being that the inspirational things that I have done should have nothing to do with my disability. My achievements should be based strictly on their merit. They should not have an asterisk by them simply because I have a disability. I haven't achieved much. I have done what you are supposed to do in life, but I get extra credit because I am disabled, and no one expected me to do it. In my experience, the only significant achievement that I have that is out of the ordinary is that I have just completed a book.

            The book, however, is not yet even an achievement because it is not published. I am working on getting it published, but I am not done yet. The fact that I got my Master's degree is not an achievement in my eyes because a master's degree in education is only as useful as the effort you put into it. I do not have a job, nor at this time do I have any prospects. What I do have is 3 degrees that I have not used. Determination to make society understand disability as not something different, not something negative, but rather just another obstacle. Along the way, I will encounter resistance, even from loved ones. Why is this?

            As I said, I have a master's degree in education. For that Master's degree, I was required to take classes on "educating children with special needs."  The language and lexicon taught in these courses indicate the overall problem: Society, with the rare exception, views disability as so unique and rare that they do not know how to handle it. They are preconceived notions of what disabled people can and cannot achieve, how their lives should or should not go. This is even true in the case of my parents. Without getting into too much of the debate we have had recently, I can say that parents often mean well but do more than good. Just because our bodies are "physically disabled or exceptional," as they call it in the education classes, doesn't mean our spirits are. It doesn't mean that we don't have normal drives and determinations. It doesn't mean we don't deserve to make our own decisions. If anything, just because we don't have a disabled spirit, people are confused.

            Common assumptions I hear regarding my physical disability aren't always limited to my mental facilities. Yes, people assume that just because I am physically disabled, I am mentally challenged, but they make other equally hurtful assumptions. For example, I have had many people that I know say that I am crazy for going sky-diving because of my disability. I might be fantastic for wanting to go sky diving, but my physical disability should have nothing to do with it. Why should my disability hold me back from doing anything if I find a way to do it? A more powerful assumption was that we never thought you would live on your own. We are so impressed by what you have done. Why is it impressive? Am I supposed to sit in the basement of Mommy and Daddy's house forever? I guess so. Just because I don't live on my own normally doesn't mean I am incapable of doing it. Yes, I have aides that come in and help, and there are glitches along the way, which most people don't have to face, but I make it work. I was even told by a close family member that they were surprised that I am living independently. They never thought it would happen. I should not be surprised by these comments, and in a way, I am not. I am amazed that it is 2014, and we still have such an archaic view of disabilities.

            I realize that there are differences between generations, and sadly we are only a product of our experiences. That being said, sometimes I feel that in my little corner of the world, even though I know many people with disabilities, I am the only one fighting against the role society has told us we should play. In my estimation, it seems as if other people with disabilities are ok being used as inspirational porn. They don't view their disabilities as a societal obstacle, and maybe that is the problem. We need to stop focusing on the physical disability model and focus on the social model of disability for a real change to occur. Will this ever happen? If I have anything to do about it, I am afraid that I cannot be the only voice in my fight. My circle of influence may be small for now, and I will do what I can to irritate and go against my societal role, but for those who know me, who also have disabilities, it is time for you to join the fight as well. Don't accept someone else's destiny before you make your own.

 

https://www.youtube.com/watch?v=8K9Gg164Bsw

Moving Along

            It’s funny what you find on the Internet. It’s been a while since I’ve written anything because I’ve been busy reading and writing a book, but today I came across something noteworthy. As many of you know, I recently graduated with my masters who have followed this blog. You may not know that I have been planning to move from my Pennsylvania home to a home in Florida.

            The home is currently being built, so as far as a physical structure, I will have an accessible place to live, but moving is never simple when you are non-disabled, much less when you are disabled. Because I require so much physical care, I use at home health services to provide that care. I use these services to avoid going into a group home or a nursing home. These services fall under what is known as home and community-based services.

            As of today, there are no uniformed national standards for home and community-based care services. Each state can set its criteria as to how to dispense these services. Why is this a problem, one might ask? Under the current system, the way services are proportioned only accounts for disabled individuals who want to stay near their hometown or area they live in currently. There is a significant gap between uses if you are a disabled individual moving from place to area. This can present a problem because it does not view disabled individuals as people, but rather as fixed pieces on a chessboard that stands still. Disabled people have just as much desire to grow and explore the world as everyone else. However, there is hope on the horizon.

            In an article found in Disability Scoop, Michelle Diamante outlines possible hope for people who use community-based services. She details what is currently know about the impossible senate bill from an Iowa Senator to improve community-based services. While the article does not include many details about the account, Diamante does quote the senators senior aide as saying “(Harkin) is currently looking at developing legislation that would enhance community access, inclusion, and support to ensure that all individuals with disabilities can receive home and community-based services and supports in their towns, cities, and neighborhoods throughout America.” All of this came about as a result of a report/study by the senator’s office, in which Senator Harkin found” Chairman Harkin’s 2013 investigative report‎ showed that the integration mandate of the ADA, reinforced by the Supreme Court Olmstead ruling, still is not being met across the United States”. To better understand this quote, let us look further at the Olmstead ruling of 1999.

            To begin with, the Olmstead case had to do with two women in Georgia. They were voluntarily committed to a psychiatric wing of a hospital. The women had both mental and developmental disabilities. After their initial psychiatric treatment was complete, it was determined that they should be moved to a community-based program, rather than be confined to a nursing home or institution. Unfortunately for them, both remained in the hospital for several years until they filed suit under the ADA in 1999 for release from the hospital.

            This case was critical because it determined, where appropriate, community-based services should be sought over institutionally based services for people with disabilities. The senators’ proposed bill may provide hope for increased funding and fewer gaps in care for people with disabilities, but only time will tell.

 

http://www.disabilityscoop.com/2014/05/19/senator-strengthen-disability/19374/

http://www.ada.gov/olmstead/olmstead_about.htm

IDD: Call To Action

I don't ask for very much action very often, but this is a good cause that my dad forwarded me earlier this week. Please read the letter below and if you are so inclined, join the fight to give people with disabilities opportunities just like everyone else. Thank You!


Dear Best Buddies Supporter,

Last week, a landmark agreement was reached between the Justice Department and Rhode Island, which will serve as a precedent for years to come and bring a much-needed change in the other 49 states. Click here for the article:http://mobile.nytimes.com/2014/04/09/us/developmentally-disabled-get-more-workplace-protections.html?referrer
Doors once closed will begin to open for people with IDD to move forward as contributing members of our vital workforce. Best Buddies is poised, at the forefront of the supported employment movement, to maximize the opportunities for people with IDD across the country.

Anthony K. Shriver visits
Best Buddies Jobs participant
Arjun Hemphill at the Audi of America Headquarters.
For over 25 years, Best Buddies International has focused its efforts on including individuals with intellectual and developmental disabilities (IDD).
With the unemployment rate for people with IDD at 76%, we must work to engage this group of workers. Today, our Best Buddies Jobs program has expanded to eight cities in the U.S. and is now launching in several cities throughout Latin America, the Caribbean, and Asia. The goal of our employment program is to continue our mission of inclusion in the workplace so that people with IDD can share the same benefits as any work and experience the joy of being a contributing member of our global workforce.
People with IDD are enormously talented, loyal, hard-working, and driven individuals who can contribute to the workplace. Individuals with IDD are making significant contributions every day to businesses small and large; they change the landscape of corporate cultures positively. Their skills and abilities can't be overlooked any longer.
I challenge corporations worldwide to hire people with intellectual and developmental disabilities. With outstanding resources and proper support, it is an ideal time to invest in this incredible group of people to assist in growing revenue, improving customer relations, and effectively managing your operations.
Don't miss out on hiring this skilled, talented pool of workers. Please join me in supporting the work of Best Buddies Jobs and fostering a bright future for people with IDD to secure rewarding jobs, live on their own, become inspirational leaders, and make life-long friends.


With gratitude,




Anthony K. Shriver
Founder & Chairman, Best Buddies International

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

The Move

       It has almost been a year since The Voiceless Minority started. At that time, we have published nearly 50 blogs here on the blogger website. 
       As the New Year begins for The Voiceless Minority, it is time that we make a move. We are moving our web address and hosting over to word press. The new address will be: http://thevoicelessminority.wordpress.com/
       Nothing about the blog will change content-wise; the only thing that will change is the look and the usability of the blog. There will be an archive section for those of you who haven’t got a chance to read all the old blogs on the blogger website. There will also be a contact page and a discussion page so that those in the community or those interested can interact with one another. Please post resources or questions you may have! 
       Finally, we hope that this move will allow the Voiceless Minority to connect with those who read it easily. Apart from my traditional blog posts with our new host, we will also post things and videos. We will experiment with video podcasts with me, Jason Hahr, so you get to know the writer behind the Voiceless Minority. 
       I want to say a quick thank you to those who helped me at blogger and those who helped me design the blogger webpage. I am grateful for your year of service and help, and I hope that the next year will be just as successful as the previous one. Thanks! -Jay

We Are Athletes Too

This past February marked an event in sports that brought the world together. There are very few of these. Even though sports is a universal activity in almost every country, only two events tend to get the world together and stop the fighting; they are The World Cup in soccer and The Winter and Summer Olympics. Every four years or so, these events take center stage, and everybody forgets about the drama going on in the world for a couple of weeks, but there is an event that also occurs every four years that many people are not aware of.  

Every four years at the same site as either the Summer or Winter Olympics, there is another sporting event. It is known as the Paralympics. It is not only sad that the rest of the country does not keep up with such Paralympics activities such as hockey in the winter and basketball in the summer, but it is also sad that the United States is the worlds leading supporter of disability rights but has very little support for its disabled athletes.

This time the Paralympics are in Sochi as were the Winter Olympics. For the first time this year, the NBC family of networks presents an unprecedented 54 hours of coverage of the Paralympics. While the “able-bodied” Olympics drew a record audience in February, the Paralympics are living up to low expectations and not drawing nearly as much of an audience. In the United States or worldwide, credit must be given to other nations as their margin of support is much greater than that of the United States. This is sad for me because I recently graduated from a school that promotes disabled individuals; they even promote a small contingent of disabled sports. So I guess it hits me more challenging than most who will read this, but I must raise a question.  If we are the world’s leader on disability rights, and we do not even support disabled athletes, what does that say about our treatment of disability in this country at all? Just some food for thought. We are not our disabilities, but we are people and athletes just like everyone else.

The Paralympics close on Sunday, and we will have to wait four years for the cycle to repeat itself as far as winter sports are concerned. However, in 2016, the Paralympics summer games will be held. It is my hope by then that disabled sports are brought into the 21^st century and given the respect and support they deserve, but I doubt that will happen.

 

For further reading or information, please visit http://www.teamusa.org/