The Final Chapter

As I finished writing my research paper I sat back and felt the weight of the world lift from my shoulders. I have never told my story before and looking at it now I see so many aspects left out. But I wanted to keep my paper objective and in that left out the inner growth I have experienced along with my own transformation. Though faith is a very important element, it is by no means the only one, and being that faith relies upon something bigger than us, I left it alone in favor of empirical evidence and observation.

And as I reflect on what more I could do I stop and seriously ponder the plight of the mentally ill. I cannot help but wonder how many children are in the system because of a missed diagnoses. As I prepare my final version, tweaking parts and awaiting verifications from others, I think of future projects I could do to help create awareness but I must remain focused on being an active force in the creation of a Disabilities Study program that could be included in college curriculum. I feel very strongly in that.

On the subject of faith I have but a few words to say, we each have a relationship with the universe in whatever format of worship that may be, but in the end it does no good if we do not help our fellow human to achieve their fullest potential.

Incarcerate NOT Rehabilitate

In doing this project I had no idea how much things had changed, on the surface, and how very little has been done by way of word usage. We still use terms that denote the disabled person as having created the disability themselves, the phrase “you’ve overcome it” comes to mind most often. Though I know people mean it well, it resonates deeply in the mind of the person who has disabilities.

But what I have noticed even more is that even with laws in place to help disabled people integrate, like the A.D.A. and A.D.E.A., it is rarely enforced and programs that would help those help themselves are constantly under attack by various levels of government. It seems wrong that we pass these laws and yet cut the funding, in favor of other pork-barrel projects, and leave the disabled to fend for themselves.

One thing I have seriously looked at is teens and mental health. With the cut backs from local communities, like Grays Harbor, they are shutting down facilities to help those who may have mental health issues. What happens to those children then? How are we supposed to get them the help they need?

Something is wrong when we start looking at human life through the lens of dollar value. These children could become productive people, if they had the services to help them out, instead, we close these facilities that could help them and they end up on the streets, angry and alone. I spoke with a gentleman who works at a local youth detention center and he spoke of how many have anger issue. When asked if they may have mental health issues he responded with a yes.

How is that morally right? How is it we have become a society that preaches our connection with Christ, and turn our backs on the ones who need help? Once you are in the system you become “institutionalized” and criminality is something you become. But how do you break this old cycle of incarceration for these youth? How do you overcome the prison machine who favors money and jobs over true rehabilitation? I won’t be able to answer that, not in this project, but maybe I’ll do some project later down the road to address this.

The Start of Something Big

     How do you objectively examine the subjectivity of an issue such as disability? Moreover, how do we as a society classify what is “normal”? These are questions that only recently I have begun to ask myself because I live with a disability. It is the goal of this paper to share with non-disabled people the stories of individuals with disabilities and to demonstrate how the world reacts to us. But this is just the tip of the iceberg, as I have begun to learn, and the issue of being disabled goes way beyond the inner struggle one has within themselves in regards to place, identity, and “feeling productive” in a world where we are segregated and judged as “inferior”.

     To understand why it is we are considered “abnormal” one would have to look back in history and understand the development of societies along with social constructs. In doing this, we will look at some language and idioms that are present in today’s world and see how it affects those with disabilities. 

     During the research phase of this project I conducted several interviews with disabled people, each one having a distinctly different disability, and posted several surveys online in order to gauge the societal viewpoint. In order to protect the families who have participated I am changing their names, and those who participated in the survey were never asked for any information other than general attitudes and behaviors towards persons with disabilities. A copy of the survey is at the end of this research paper.

     Another aspect of disabilities I will be looking at is imagery. In a world of movies, blogs and social media I wanted to take a look at how we portray ourselves and how Hollywood sees us. We’ll examine a few historical instances where persons with disabilities were not just on display at freak shows and circuses but how the medical establishment placed them into the spotlight themselves. This is in effort to demonstrate how we have been viewed, historically and currently, and how some of the language used to describe us came to be.

   Finally, I will wrap this all up in the story of my life. I will reveal harsh truths, discrimination, demeaning attitudes, homelessness, and the constant struggle I have had with my place in society. It will be harsh, raw and uncomfortable for some, but for others they will read a similar life and finally know that someone else has walked in their shoes. This is an exploration into the world of disabilities and what we have had to deal with, not an exposé on society but an insight into our world.

Empowerment

I don’t know what I feel about disability studies. This whole notion is one that I only recently discovered while doing a study abroad trip in Ireland. To come home and discover how very little we have by way of American universities in regards to disabilities studies is unnerving, especially at a time when we are so “culturally” aware. Even more unnerving is how others have tried to create a program that was inclusive, only to fill the roles up with non-disabled persons while claiming they were doing research for disabled people. How is this even right?

Perhaps what I find even more disturbing, then the lack of funds for disability studies in universities, is the fact that so many professional disabled persons are overlooked in favor of able body persons. Linton speaks of one such event at the place she taught, where upon some faculty had created a committee in order to draw up plans to bring to the university a research facility for disability studies, but that the planning committee did not even have one disabled person on the board, or any associated with its construction or design. But I have had my own experiences with this sort of attitude.

The fact that my ideas on programs that could be created for disabled people, working alongside non-disabled people, living in a truly inclusive and modern community would be scoffed at and called “socialistic ideology”. Why? Because I challenge the idea that disabled people can contribute in a beneficial manner and help run a community? Or is it the fact that I myself, being disabled, couldn’t possibly understand what it would take in order to put such a program together? Or does it challenge the notion that our current communities are not doing everything possible to “include” disabled people and I just want to present an example of how we could?

For many years I have had people tell me to follow the path of less resistance, to normalize myself, to become mainstreamed. Now I am beginning to wonder just why it was so important for me to admit that I had “overcome” a disability when that disability was never a direct result of something I had done. Instead, I would have to defend my anger, discuss why I felt the way I did, and be happy with whatever program the government felt I qualified for to get. I am not happy with being a status, or designation, or a statistical number that some numb-nut can crunch in order to weight the cost-effectiveness of Medicare or Medicaid, or some entitlement program simply because the world around me won’t take me serious. I am not just another portfolio example that same specialist can feel good about helping because he eliminated a minimal amount of my pain or discomfort.

What I am is a human being who desires to know why the world around him views his people in such a light that we are cast off as undesirables, or patients needing to be medicated. What we are, are individuals who have dreams and desire to be a part of this democratic, but hypocritical, republic and have a role at how we come along as a nation, or a species.

We are not side-show attractions, specimens or examples of “abnormal” behavior. We are beings who share emotions and understandings at a level only other marginalized groups understand. We are not passive, silent, and isolated because we want to be. We are silenced, controlled, and monitored because they are afraid we will upset the status quo and balance. We are not angry, we just want the right to self-determination and autonomy.

Even After So Long

I spent today reading the first few chapters of Claiming Disability by Simi Linton and I have to say that I am sitting beside myself. To read the words that so described my own experiences, within my world, shared by others was both comforting and reassuring. I myself am unable to articulate it at this time, and although I have "overcome" my disability, it is still a chain around my neck - even if the perception is internalized.

But I have to say that Linton hits the mark. I sat back on a few points and reflected very heavily upon what I read, along with the emotional reactions, realizing for the first time in 15 years there really were others who could identify with my experiences. It is very healing.

As I put the book down for the night I was left with very few questions and a deep sense of self. This is like when I was in the Ireland Program and I found my people, but I walked away with even more questions wanting to know who I was, as well as where my family came from. In finding and learning about the different cultures through various programs I still did not have a sense of self. I knew what I identified with - what music, what art style and so on - but I struggled with my "place" in society, with definitions and descriptors.

As hard as it is to deal with the internalized emotion, I am becoming, and in becoming I will be me.

Educational Empowerment

In exploring the world of disabilities I checked out a book called “Adolescents at School” in order to better understand the process of identity development and children with disabilities. This book is filled with sections written by researchers and psychologists about the development of adolescent identity and how it is complicated for children with disabilities. Through into that mix gender, ethnicity and economics and you have yourself quit the ordeal. Needless to say I have learned a lot about how I formed my early identity and why it was wrapped up in a bundle of anger and isolation. 

As much as I would like to say I had a perfect childhood, I did not, and it would be wrong for me to say I had a horrible one. I can say there are many instances I replay in my mind today, in order to understand where the world was coming from, and although I was angry I had reason to be. My socialization was anything but grand; many times I found myself the butt of some awful joke or some leering glare. Of positive situations I can only remember a few as most of my experiences were negative.

This, I am learning, had a very counter-productive result. Instead of teachers trying to accommodate my disabilities, I had ones who constantly pointed out my problems. In 6^th grade I had a teacher who made a comment to me about brushing my teeth, which I did relentlessly, and it made me feel as if I was not doing enough. The problem was that my teeth had no enamel, that protective coating that enables your teeth to remain strong and prevent decay, which is common with people with Ectodermal Dysplasia. Instead of contacting my parents for an explanation, she decided it would be better to use the humility rather than educate herself, and ended up causing me to become obsessed with brushing my teeth. No matter how much I brushed them, I lost them all in 10^th grade and suffered another school embarrassment. 

It was the first time I ever felt different, other than the speech therapy I attended for seven years because I had a cleft palette, and began a long cycle of inner abuse. I never imagined a world where I would be a part of it, instead I faced a world that had placed obstacles in front of me without giving me the ability to overcome them. But how can you hold a society at fault when the knowledge on how to deal with children with disabilities was so new?

At the time you can’t but today you can. It is a much different world today as we view what we do to accommodate children with disabilities and create a curriculum that engages children and helps them develop skills needed to be autonomous. By empowering them with education and participation, we can change their outlook by creating positive learning experiences.

Gambit of Questions

As I collect information and work on surveys, I was confronted with the specter of sensitivity and how to proceed with something I had so many times in the past been reluctant to participate in. How do you ask questions without asking that one that may offend someone? It is a delicate balance.

I sent out surveys and additional questionnaires, of which I have received some replies, and sorting through the responses has shed some light. Although I have not finished with my interviews I am two steps closer to being done with those. My surveys are done and all I need to do is shift through them at the right time. I must admit that some of the anonymous answers have given me pause.

I know what I am trying to do, but will it become what I want it to? Will I be able to construct a paper that will positively portray those who have disabilities and will it be constructive enough? I worry about that because it is the image I have always tried to portray, myself, and struggle to rise above what others may perceive disabled people of being capable.

But this is the problem. In trying to portray myself as able and normal I have over the years hurt my body in ways I never imagined I could. In our move to our apartment in Olympia I once lifted a television that was far too heavy for me. In the process I blew out my right cornea. Pride had gotten the best of me and I was trying too hard to not let others help. That is a feeling I dislike most - the helplessness at what I have been handed down.

It reminds of those things I cannot do for a lack of full-strength in my hands or arms, or the fact they become too fatigued after a very short period of time of use. It constantly reminds me of what I used to do, like writing, and the simple joys of doing them. But my case is so much different than others and I have often sat and wondered what the quality of life is like for others who have worse conditions. How do they deal with it?

These are just a few of the things I have been thinking about lately. Interesting how deep we can bury something inside, only to have it brought up at the slightest insecurity.

Spoken Words

In doing this project I wanted to gain an insight into the world of disabilities through modern eyes. A realization I had, as I began this, was how much my views had been slanted due to my own experiences and how the had caused me to be at odds with so much around me. In doing an interview this morning, of a mother who has a son with several disabilities, I began to see how the world has truly changed. Though not perfect, society has at least gotten to a point to where children today do not seem as confronted by ignorance as much as we did when we were younger.

I can remember hearing stories, when I was younger, at how disabled people were placed into attics or basements and the families did what they could behind closed doors. I also learned of policies that have been negative towards those of us with disabilities - like sterilization laws - and how society had dealt with them in the past. During this interview I was struck with an overwhelming sense of hope. The fact that the young man is able to construct positive experiences from his primary education, and the faculty around him, says a lot to how far we as a society have come.

During the interview questions rose, after others being answered, that have me wondering at how we can best accommodate those with developmental disabilities and how we can help socialize them into mainstream society. Because disabilities vary in degree, it is not always the same methods that help all situations, and the method to enabling them may need to be tweaked upon each individual case. It is a very interesting notion.

I keep going back to the discussion I had this morning with this well-adapted mother who has had her own share of struggles. To see how she has endured a test of inner strength, while providing her son with opportunities to succeed, shows me how much we have changed and how much some people will go out of their way in order to provide a better place for their children, enabled or disabled. But along with that it made me think of what factors may have gone into her being able to do what she has done.

Financial and location seem to be some of the bigger issues at hand here. The mother I spoke to this morning had several advantages that others may not possess, such as military facilities and professionals. I can say also from my own experiences and coming from a military family, that these services are invaluable. The cutting edge technologies and techniques often employed on the battlefield come home and create opportunities for those affected by a physical, or emotional, disability. The added benefit that service members have, healthcare and mental health professionals, can help someone better adapt to adverse situations.

Several of my reconstructive surgeries were done by military doctors who were able to create working hands versus pretty hands. Of course these advancements come from the battle wounds of soldiers on the field, they become real world solutions once the methods become perfected and mainstreamed. But not every person, or family, has access to these types of services or professionals and that can become an overwhelming experience for them. For some families the stress of the financial burden can often override any progress made.

In closing our interview, a shared sentiment was how studies about disabled people and social integration, instead of segregation, could impact any disability positively. When a community works together, whole mountains can be moved - especially ones made of ignorance and judgment.

The First Step

I have been browsing web sites this last week for articles that can paint a better picture of the world of disabilities in hopes to gather enough information to write a project paper on Generational Issues Affecting People with Disabilities. I can say that at some level I am disappointed by some of the data I have accumulated thus far. Not for a lack of information or opinions, but for the lack of representation for a group of people that spans across ethnicity and religion. It is perhaps the reason I named this journal blog what I did, for it is a path less walked than many others.

Perhaps that should be the very element that makes it so positive. It will be my goal, in writing this paper, to demonstrate attitudes of people around those affected by a disability, as well as the mind-set of the individual affected by the disability. In doing this I aim to provide a glimpse into the world of what a disabled person might be going through, in many stages of life, and I'll be using several interviews to help with this. In doing this I also will be confronting societal imagery and portrayal of those with disabilities.

Part of why this topic was the one I selected is because of what I myself went through growing up with disabilities. Mine was a genetic variation of Ectodermal Dysplasia and throughout my life I have been subject to criticism, ridicule, and quite frankly ignorant comments. As I grew older, the anger subsiding, I began to wonder why it was I felt the way I did, and why others viewed me in such a light. This of course lead to other questions and I began to wonder what other persons with disabilities have faced in their lives.

But this is sort of a double-edged sword. On one hand we try and support those with disabilities filling them up with a sense of pride and ownership, but when they hit a certain age, or strike out into the world abroad, they often run into situations that complicate their lives; be it prejudice because of a pre-existing condition, or the lack of being able to "keep up" with the others around them. And this brings up even more issues.

Not all disabilities can be measured and not all disabilities manifest in a physical way. This makes it even more complicated. Emotional or Cognitive Disabilities affect a person on levels we as people do not always see. It also affects how others see them. So then the question becomes - How do we best portray individuals with disabilities in a manner that does not belittle, or mock them? At this point I am not even sure I can answer that, as I can only relate to my own struggles.

So it is with that I begin this online journal. With those questions, and so many more, I will begin to delve into the world of imagery, portrayal and place of those affected with disabilities in hopes to generate a study that will at the least educate others as to the lives of people with disabilities.