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/

Aide Care System; The Hurtful Loop Holes

 
So the New Year is just fifteen days old, but already I can tell that this year will be different. That being said, I must write about a significant issue that has consumed my life for the past six or seven hours. Today I was informed by my personal care agency that one of my care workers could not work due to certain issues. On the surface, this seems like a non-issue, but it turned out to be quite a large one.

            For those that don't understand the aide care system, let me backtrack a little. I'm not aware of whether I have mentioned that I live by myself in previous blogs. I live in a small college town in the Northeast, which has a college that caters to physically disabled individuals; however, college services are only available if you live on campus. For the past three years, while completing my graduate work, I have chosen not to live on campus. Along with that choice comes several challenges that have nothing to do with academics.

            In the state I live in, there are three categories of options for those disabled people who do not wish to live with their parents. One can either live in a nursing home, a group home, or independently using what is known as an independent living waver.  Although I have chosen the third option, the independent living wavers, let me briefly outline the other two options before going into my choice.

            There are those outside the disabled community, and even those in the disabled community that has preconceived notions about what the nursing home or group home setting would be like. However, some of these perceptions are misinformed. There are nursing home and group home environments that are very restrictive. In the typical group home or nursing home environment, an individual pays rent with their disability check or through a family member, trustee, or guardian. The amount that the individual pays is used for various purposes, including housing costs, daily meals, and aide care costs. In most situations, residents are provided with three square meals a day cooked by the staff. They do not have to worry about their care needs, not being met because there is always staff available.

In some cases even, individuals are given a portion of their SSI or SSD check back to spend as they wish. Critics of this system suggest that the care quality is not always up to par. Often these facilities are either understaffed, poorly funded, or a combination of both. While the residents do not have to worry about their care needs being met, their care needs are often completed to the bare minimum, and extras such as specific grooming tasks may be neglected or done in a half-assed manner, if at all.

            The second option is a version of the group home/nursing home, which I like to call the group house. Personal care agencies often run these, and they are places where two or more individuals with disabilities or physical care need to share a residence. It is not like a group home in the traditional sense in that there are not 30 to 40 residents. Instead, these types of environments typically house three to eight individuals. Three to five attendants usually staff these facilities. These facilities provide the best of both worlds; in my opinion, however, they are limited in that they have not yet become the norm. Usually, people are forced to choose between a nursing home and the option I chose.

            I chose to live on my own using the independence waver. The waver in and of itself is a good idea, but it needs some serious retooling to be effective. There are two categories on the independence waver; one can either be a consumer who hires their aides, thus engaging in participant-directed care, or one can use what is known as agency model directed care. I know I have long explained the problem than usual, but I feel this is necessary to explain the problem I had earlier. I have tried both participant-directed care and what I thought was agency model directed care. I have found that in theory both of these systems are good and well designed but the practice is much different from theory.

            As a disabled man, I still cannot understand why a system designed in theory to help make me independent in practice takes every shortcut to limit my independence. Recently through no design of my own, care workers have either been told they can't work for me or have chosen not to show up for mandatory training activities. I had been with participant-directed care in the past, and I purposely switched over to the agency to avoid this issue. Still, today I get told that I am a consumer delegate, so it is not the agency's responsibility to find me coverage in the case where they terminate a worker of mine. Granted, they are doing their best to help me out, but I must say that I am angry at the system on principle at the writing of this article.

If a company declares itself a personal care agency and you go into a company with the impression that they will cover your gaps when necessary, it should be the agency's responsibility to fulfill that duty.    I understand that I came into the current agency that I'm with, with my aides from other companies. Still, I believe that once those aides were forced to undergo training with the current company that I'm with, that company should then assume responsibility for them. I will not throw the current company I am with under the bus anymore except to say that yes, they are within state laws to do what they are doing, but I think it is morally appalling that such arguments have to occur. 

The labels and terminologies used within the aide care industry are set up not to benefit the service consumer but provide as many loopholes as possible. The system designed to promote independence instead creates much more stress and puts unnecessary burdens on individuals in need of care. Rather than focusing on what they can contribute to the world, a large portion of the disabled population has to spend a great deal of their time contemplating whether or not they are going to have the necessary services. Throughout the whole system, in general, not just in my situation, individuals are not willing to take responsibility for their part in the process. Instead, they want to pass the bucket so often that the disabled person gets discouraged and stops making noise.

I'm well aware that this writing piece may ruffle feathers in the disabled community at all levels. However, it is time for a change. Disabled people should not have to be limited to three bad choices. The second choice for living independently needs to be more widely available: the group house setting that I spoke of earlier.  Secondly, parents and supporters of the disabled need to put aside their preconceived notions of wishing that disability personal care was perfect. Perhaps if such group setting such as nursing homes and group house settings were not stereotyped and vilified, both of these systems could be improved. Finally, the state systems need to be federalized when it comes to the independence waver. Usually, I am not a big supporter of the massive federal government; however, state agencies have no uniformity. A majority of agencies will find any loophole to put the burdens on the consumer and not themselves. I understand that the personal care industry is not the most desirable field, but if you were a company in charge of your employees, you could not let them control everything. I understand that the personal care aide is a vitally important person but giving them too much control creates gaps in care and loopholes that need to be closed. Overall, for a system that started as a good idea, the personal care system needs to be looked at too closely, no matter what type of care one is discussing. Unique care should be freeing, not limiting. 

Thank You

So this is not going to be like a regular blog of mine. It is just a quick note to thank you for your support with the blog in general, but specifically for any of you have called to support the CRPD. Remember, the second round of hearings is this Tuesday, November 12^th. They can be seen on CSPAN or the Foreign Relations Committee website. However, once these hearings are over, that does not mean the process is over. The issue will not come to a vote for several months, so I ask for your continued support and ask that you continue to call your senators until the American disability community has more to be remembered for than just the ADA. Here’s to hoping we can pass the CRPD within the year. Thank you again. 

CRPD Hearing: Round 1 Aftermath

 Today was the first of two hearings on the Convention for the Rights of Persons with Disabilities conducted by the United States Foreign Relations Committee. The hearing went for approximately two and a half hours. Both sides of the issue were equally given time to present their argument. Senator Robert Menendez of New Jersey did a fine job proceeding over the hearings.
       My the previous blog laid out my position on the treaty as well as the position of approximately twenty-six prominent disabled organizations in the U.S. As I sat and watched the hearings that were broadcast life on C-Span something struck me. Regardless of where one falls in regards to the treaty, the disabled community can only see the hearings as a positive. Not since 1990 has the disabled community’s needs been put front and center. Twenty + years ago this quiet segment of society was given a voice and a great voice that allowed such platforms like this blog to exist.
       Amongst all the debates over how the U.S. was going to be affected by the treaty I kept hearing one theme. The U.S. and the ADA are the gold standards in disability rights. For the first time in a long time, American was acknowledging the positive impact we had made on the world. We might disagree on such issues as how big government should be or even what roles government should play in our lives, but for this one day, we were able to put aside differences and civilly debate an issue. On both sides of the issue, there were bipartisan contingencies. Democrats and Republicans were supporting the treaty as well as forcing their opinion against it. Between all the battling, over whether a United States individual’s right to be homeschooled would be affected I heard one important thing. No one out loud said it but it was still there. The importance of disability and individuals with disabilities, which was not recognized 20 years ago, was again at the forefront of the American political arena today.
       I could get into all the arguments that took place over adding or subtracting political Ruts that would protect America’s laws, but that is not the point of this blog entry.  Although this blog entry is going to be fairly short compared to the other postings I simply wanted to write to express my great thanks to the Foreign Relations Committee for even discussing disability rights on a major stage. I hope that they do pass the treaty because I am a firm believer that the billion people with disabilities worldwide deserve at least the same quality of life that their able-bodied counterparts get, in whichever country they live in.  I understand both sides, but as these supporters said while the hearings closed, “America is a great and powerful nation. We are the best example of disability rights out there. This would be a great way to extend our leadership without negative influence on the international community.” Whether you agree with my opinion or not, one cannot disagree with the point that today and the hearings next week are the beginnings of what can be a great time for disability rights in America and the world.

P.S.: For those who missed the hearings today you can view an archived video session on C-Span’s website or on the Foreign Relations Committee website. You can also keep in mind that the second round of hearings will occur next Tuesday. For those who are not familiar with the Political process these hearings do not signify the United States’ ratification of the treaty rather they are just the first procedural step required to eventually bring the issue of treaty ratification to the floor.