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

The Hero Complex

            Being a new disability advocate, I find myself continually plugged into various publications. One publication I get news from is the American Association of People with Disabilities. Every week they put out a handy newsletter entitled Disability Weekly.

In a recent issue in a segment called In the News, they had a story about a mom who wrote a somewhat controversial piece. Her piece was entitled My Child with a Disability is not My Hero. As the title suggests, Miss Sarah Sweatt Orsborn asserts that disabled people but disabled children are not heroes. At first glance, even I, the non-politically correct writer, that I was taken aback. However, after looking further into Miss Orsborn's premise, I have to say I agree with her.

The premise of the article is quite simple. Orsborn suggests that the term can be more harmful than positive.  From my perspective, as a disabled person, I cannot help but agree. Every time I hear  "Oh, you're so amazing," or something of the like, I cringe. This occurs even when I listen to it from my own family. How can I be fantastic for doing such everyday tasks such as getting up in the morning and going to school? Every time someone comments on these lines, I feel like it diminishes me as a person.

I am not saying that complimenting someone for his or her accomplishments is a negative thing. I am realistic and understand that we all have egos that need a little inflating now and then. The point that Miss Orsborn and I are trying to make is that complementing somebody is fine but merely complimenting them because of the obstacles they face diminishes their self-worth and the work they have accomplished. Let me put it another way; it is like saying that we did not expect you to set the bar so high for yourself because you have this infliction. That not only causes a problem individually, but it results in a group problem.

What is that group problem? Disabled people as a whole have always expected less of themselves because society, in general, expects less of them. If we begin this second-class citizen in the doctor nation at an early age, it is no wonder disabled people set the bar so low for them.  I am a 27-year-old person with cerebral palsy who just graduated with my master's in education. However, I did not graduate with teacher certification, even though I had a 4.0 cumulative grade point average in the program. So why am I not a certified teacher, one may ask?

Simply put, I listened to society when they set the bar so low for me. Some at my school thought it was so amazing that I was getting my masters, but they saw me as too disabled to teach in a classroom. Even though it was not said directly, this was an example of the hero complex. It's so amazing that I got so far; they did not expect me to go any further and were unwilling to invest in me to help me do so. I should have done not settle for such low standards, but I did, and I have learned from it. It has helped me develop my voice as a disability advocate. It has also taught me that as good intentioned as parents are, or even family members are when they say to a disabled child, look how much you have accomplished with what you have had to go through, this has to stop.

Based on their accomplishment, judge their achievement, don't put a star beside it with a little footnote that said he or she had a disability too. Changes in culture and society do not start in Washington in the political arena. They begin with everyday people. If disabled people and those who support them want to change the way disability is perceived in this country, we have to start with ourselves. It is time that disabled people's expectations are just as high as everyone else's because we may have visible or not visible obstacles, but that doesn't make us any more or less of a person. 

Mental Health and Disability

The last blog I wrote was entitled “The Acceptance Problem.” It talked about an issue that is not often discussed within the disabled community, that of disability identity versus complete identity. Now it is only appropriate to talk about another issue that is not talked about which is disability and depression.
       There are a variety of disabilities. There are the obvious types, which can be seen, in physical disabilities. There are also hidden disabilities that impact a person’s learning style such as Asperger’s, Dyslexia or Dysgraphia, just to name a few. However, one type of disability that is not often considered a “disability” is that of mental illness. Whether it is Bipolar Disorder, Schizophrenia, or Depression these can be very debilitating, when one combines these disorders with a physical disability, the discussion virtually stops.       

My battle with depression has led me to come to several conclusions about disability and depression in general, along with the treatment of those who happen to have both. As I have written many times, having a disability comes with many challenges, which include: social, physical, and emotional challenges. The profession of psychiatry and psychology is designed to deal with individuals that have depression, but not often do these practitioners encounter individuals with disabilities. This statement may be incorrect in factual nature but it is not erroneous when it comes to experience. I have battled depression for a long time.

In my late teens, I began to realize that I was different. One may ask, how could you not realize that you were physically different before that? My answer is that for the majority of my life I was treated as if I lived in two worlds. My parents, up to that point, had always treated me as if I wasn’t disabled. I don’t know if there was the intent here or not, but they never let me consider my disability as an obstacle, so I never did. They did their best to allow me to participate in every opportunity that everyone else did. The way they treated me, it never crossed my mind that I was different. However, that all changed in high school.

Adolescence is hard for everyone. Kids in middle school are trying to find out who they are, but they don’t even know that that’s what they’re trying to do. In high school and even at the end of middle school, people are trying to find their niche. I don’t know why, but cliques start to develop. Suddenly, the littlest difference is made obvious, and it is an individual’s goal to hide their difference. However, when one has such physical differences from their peers, it’s kind of hard to hide. I’m not saying that children are malicious on purpose; just that society has taught us to fear difference.

As I began to become aware of my difference for the first time, it was kind of a slap in the face. I took out my anger on my Mom, Dad, and younger sister. The relationship I had with them throughout those years was not the prettiest. And for the constant fights I caused, I apologize. When I first began to deal with depression, I did not handle it properly. I did not seek out professional help. I don’t know whether its because I had been taught by society to fear the stigma that comes with dealing with emotional issues, or what it was, I just know I didn’t handle it properly.

In fact, it was not until an extremely dark incident in my late twenties, that I began to seek help. Many who read this might be uncomfortable with what I’m about to say, but I will honestly say that I had reached the end of my rope. Through a series of incidents, I realized that something needed to be done about the way I approached life and my disability overall. I thought that accepting the problem for what it was and dealing with it would be the biggest hurdle that I had to overcome, but I was wrong.

As I began dealing with the mental health profession, I realized that there was a disconnect between mental health professionals and the disabled community. Most of the mental health professionals that I dealt with seem to think that once I accepted my disability that I would not be depressed anymore. For their part, they were partly right, accepting my disability was part of my problem but not the whole problem.

Acceptance is only the first step. And that is only part of the depression at least for me when it comes to disability. For years I’ve complained that there are two types of disabled people, people that are okay with it and people that are not. However, I’ve recently learned that this is not necessarily the case. There is a third type of disabled person. One who is okay with their disability from a personal standpoint, but who is not okay with society’s treatment of persons with disabilities. Honestly, I can say that I fall into this third category.

It is hard to take the mental health profession and mental health professionals seriously when they do not often believe that there is room for this third type of person with a disability. Luckily, currently, I have the pleasure of working with Dr. Michael Mercatoris who has given me permission to use his name. Mr. Mercatoris is the first one of his kind that I have worked with, who seems to understand that depression and disability is a two-pronged problem.

First an individual, in this case, me, has to accept themselves for who they are and not what society thinks they should be. Secondly, an individual has to realize that there will be societal obstacles associated with their physical disability that may cause depression. The depression will not go away simply because society is not ready for such a radical change and full acceptance of disability as a norm. Rather anyone dealing with depression or a mental illness along with a physical disability must be willing to go against the grain. They must be willing to stand up for who they are and what they are and must be willing to sacrifice in order for society to slowly change, that being said, there are other things that need to happen as well.

If one accepts the premise that depression is going to be associated with disability from day to day, there are certain things that must occur. The mental health community in general needs to be better equipped to deal with i.e. help those with physical disabilities along with their mental health issues. One might ask: how can they do this? I don’t have all the answers but one answer might lie in the way they treat individuals in inpatient and outpatient programs. For example, if one is so desperate that they need to go into an inpatient facility and they have a physical disability, it might be appropriate for all involved with the individual to make sure that that the facility has adequate personal care available while participating in the inpatient the program so that they are not worried about their physical care needs to be met along with their mental health needs. As far as my own personal experience, I can recommend that providers may want to be more open to the idea that individuals with disabilities are intelligent beings and perhaps their pain or emotional issues go deeper than not accepting themselves for who they are, but perhaps they are too reflective for their own good and realize that society is in a sad state of affairs when it comes to disability. Although it is the 21^st century, in some aspects of disability, society is still in the middle ages. This may be a hard pill to swallow for many who are disabled, including myself. However regardless of how hard it is to swallow, the disabled community should have outlets in the mental health community who understand us as people and not just a disorder. Thankfully, I have found two, Dr. Michael Mercatoris and my aunt Eileen. For that I am very thankful.