A Fresh Start

It has been nearly eight months since there has been anything new posted on this blog. A lot has happened in eight months hiatus. I have finished my master's degree program in Teacher Education. However, due to the trials and struggles that have occurred during that process, which can be read about in earlier entries, my focus has drifted away from teaching and advocacy for persons with disabilities.

Most of this blog has been dedicated to advocacy and discussing various issues that people with disabilities encounter. However, the point of view of the author, me, has changed. A lot of the writing in earlier entries came in a time of my life when I was unhappy with the circumstances faced with. I have since re-evaluated The Voiceless Minority. There was a time where I thought about abandoning the project altogether if I'm honest. However, I decided I would resurrect the blog at this time and take it in a slightly new direction. It will still address social issues, but I will also address practical problems.

One of our more critical topics that will be discussed is, "Is it Accessible?" In this series, I will break down all the places I've traveled to or have been. After doing so, I will examine specific criteria to determine whether areas are accessible by paper standards vs. accessible. Apart from the "Is it Accessible?" series, the blog will focus on current events and real-world issues that may or may not be related to disability. This shift in focus is not meant to take away from the foundation of this blog; rather, it is meant to demonstrate that people with disabilities have a highly engaged mind. To undertake this part of the blog, I may, at certain times, ask for issues to investigate from you, the readers. You can find my email to the right of any page, three-fourths of the way down the page, under the links that say, "Contact Me."



Thank you for reading, and I fear nothing and regret less.

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.

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 [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