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