Sittin’ Pretty-an essay I wrote for Eng 306
Consider a chair. Consider it even as it sits there. As you sit in it, as I in mine. Shootin’ the breeze, talkin’ smack, wastin’ time. As we sit in it, on it, upon it. As it sits around us? Is us? Or is that too much of a push?
Is it us? Is mine me? Are we parts of a whole or two wholes apart? Or is it the thing that creates the whole? I think we’ve got a start, let’s see where it goes.
If you can may I ask that you forgive me my Seussian voice. It’s not meant to condescend bring you to task. I just find it fitting for the topic at hand, my apologies if it bores you. This tone and word choice truly wasn’t planned.
I simply wish to better show how it looks from my eyes, as a member not of the main. I hope that you’ll listen and be entertained. But I also hope you walk away knowing more than my name. I’m Syd. I’m in a chair. But look closer because that’s nowhere near the whole story.
My chair is a raft steering me from shore. It propels me through life, up mountains and through doors, and on to much, oh so very much more. It is freight train barreling down the track toward a destination. Is it salvation or damnation? Oh well, there’s no looking back, as I gather breath for my life’s exclamation.
More than anything my chair was a choice. Everyday it’s a choice. I chose independence I chose to be free. I choose to be different. I choose to be me. I’m here sittin’ pretty, but I’m all too aware that’s probably not what you see.
You see someone jaded and misunderstood. Confined in her prime. Cut down, bound, lost in the throngs of those who would help her go where she belongs.
If that is your view, I hate to tell you you’re wrong. Listen to me. Turn your radio up. Start paying attention; you’re missing my song.
Here’s the skinny if you would be so inclined to give me a minute of your time. I was born. My life started, it didn’t just happen to me. But this state, this way, is not how I used to be.
The details are many surrounding how I came to fill my space in this place. As I said I was born, as happens to most, but there the similarities end, and that is where our story begins.
I was born with the condition Spina Bifida Myelomeningocele. That’s a long Latin term that won’t be on the test, so if you’re trying to pronounce it, you can give it a rest. It simply means that when I was formed the process glitched, and a spot in my back wasn’t completely stitched.
Other things that came with this diagnosis among others these: clubbed feet, diminished feeling (for me it starts at my knees), and an increased chance of developing scoliosis. There’s a laundry list of things that could have gone wrong. Some did, like hydrocephalus. Of others like tethered spine, I am free.
Let me stop here and reiterate, I am not attempting to convince you of my pitiable state. This is merely my way to explain my situation. To curry your sympathy would be for me degradation.
I used to stand tall, all four and a half of my feet. I used to dance and wiggle, though I’ve never tapped my feet. I used to go to therapy to make me more like you, but through events I didn’t control it became something I couldn’t do. I won’t bore you with the details of bureaucracy, besides, as I look back now It’s all helped make me, me.
Left to my own devices, and needing to keep up with the other kids at school, I turned to my chair more and more through the years. I suppose it could be said sloth became one of my vices.
Pushing was easy and pushing was fun. Wheelies and donuts were a ton of excitement and entertainment for me. But the end result I just couldn’t see. As I climbed higher, reached farther seated in my chair I ignored what was happening beyond my derriere.
Now my muscles are weakened and stiff. When asked to perform they cause quite a tiff. It’s a trade off I wasn’t ready to make. But still I’m loath to call it a mistake. I am happy. I’m healthy. I’m independent. I’m free. I hope that through this essay that’s just what you see.
Fifty-two Million Strong-An essay from Eng 306
I think it’s safe to assume that anyone who has taken a history course in their educational career is at least familiar with the Civil Rights movement and the Suffrage Movement. But I would bet money less people are familiar with another movement for civil rights that began at around the same time, the Disability Rights Movement.
The movements for women’s rights and equal rights of people of color saw great strides earlier in our nation’s history than the movement to gain equal rights for those with disabilities. It was really not until the middle of the Civil Rights movement that any headway started to be made to ensure equal rights to people with disabilities.
Prior to this point there were no nationwide standards for accessibility allowing those citizens with disabilities to be active members of society. Housing and building codes had no mandates to ensure that they would be of use to people with mobility issues. Even worse, there were no laws in place to provide an equal opportunity for education to this group. Thanks in part to the success of the other movements this slowly began to change.
1968-Four years after the Civil Rights Act was put into legislation congress passed the Architectural Barriers Act that mandated that all buildings funded by the Federal government must be accessible to those with physical disabilities. This made it possible for people who had previously been denied access to play a greater roll as citizens.
1973- Nearly a decade after the Civil Rights Act was passed in 1964 the Rehabilitation Act is passed including sections such as section 504 that laid the groundwork for the practice of Affirmative Action. This act prohibited the discrimination of persons with disabilities in the work place. Section 504 would later gain the moniker “The Civil Rights Law for the Handicapped.”
1980 – By this time the number of Americans with disabilities had reached thirty million. Due to the rapid growth of this sector of the population, the way in which they were viewed began to undergo a radical change. 1981 was heralded as the International Year of Disabled Persons. Unfortunately this change occurred at a time when several of the acts that had in the past aided members of the disabled community were altered. Under the Reagan administration, considerations to amend or revoke laws such as Section 504 created an uprising within the community to keep the laws in place as they had been.
July 1990-Another decade went by, full of protesting, marching, and much upheaval from the disabled community. Finally a piece of legislation was sent to the House of Representatives, then the Senate, and finally on July 20, 1990 the Americans with Disabilities Act was signed into law. In September of that same year another event occurred, although it went by completely unnoticed by the nation and government. Exactly two months to the day after the ADA was enacted, I was born.
Now granted this might not seem like some perfect aligning of the stars, or an event ordained by the Almighty, and in truth it isn’t. But the ways in which the aforementioned events would shape my life is something that I am still discovering the full extent of twenty-one years later. But we’re not quite to that point in the story yet so let me back up.
As I said I was born two months after the ADA went into effect on September 20, 1990, but it is the circumstances of my birth that are of real interest here. I was born with a neural tube defect called Spina Bifida Myelomeningocele. Stemming from this diagnosis have been numerous health issues including clubfeet, hydrocephalus, and bowl and bladder issues. These medical problems have caused me to undergo upwards of fifty operations spanning fifteen years of my life. My diagnosis has also made it necessary for me to use a manual wheelchair to get myself from all of life’s Point A’s to the Point B’s. Enter my involvement with the ADA.
Unbeknownst to me in my infantile state, that act would come to be the most important act of legislature in my life. Because of that act I was afforded the opportunity to attend schools that helped me in my quest of skirting my specific mobility issues. Even in a school system that was not completely prepared for my needs, (the handicapped stall in the bathroom of my high school did not have grab bars in it, problematic for transferring out of a wheelchair) it was possible to gain access to the services I required, such as an aid all through elementary school, and the things I needed such as extended passing periods and hand controls in the Driver’s Ed car, to be as successful a student as possible.
I may not have realized it, but it was due to legislation like ADA that I had the wonderful experience that I did. Because of assistance like this, I was for the most part able to engage in as normal and active of an existence as my peers. Due to my fortuitous upbringing I was also able to go throughout most of my childhood blissfully unaware of the fact that the ADA even existed, such was the level of inclusion and the far reaching effects on accessibility that the act mandated.
2009-It was truly not until I began the search for a college that I began to understand the effects and sometimes shortcomings as I saw them, of this act. While attempting to narrow down my list of possible schools I became aware that many of the places I was looking at were simply not ready for me. The issues I encountered ranged from campus buildings that were not equipped to allow someone in a wheelchair to navigate freely, to a complete lack of services for students with disabilities.
This confused me. How could it be possible that with a national governmentally mandated act there were universities in this country unable to adapt to the needs of students with disabilities? I immediately found fault with the act itself. I was no stranger to the idea that places could be inaccessible or ill equipped. I had seen my share of poorly designed buildings and at times a complete lack of accessible bathrooms. But it was unimaginable to me that entire campuses could fall victim to such a blunder.
Fortunately I had little time to be disheartened. I was made aware of Ball State University due to its journalism program, my major of choice. Upon touring I immediately realized that the university was more than equipped to handle anything that I might have to throw at it. Not only are the buildings on campus accessible, there is an entire office dedicated to providing a wide range of services to students with disabilities. I have since learned that these services include but are not limited to, note takers, scribes, and interpreters and testing accommodations. Here was a place I could finally feel comfortable. And so I in the Fall of 2009 I became a member of the six percent of college students with a disability.
2010- In March of this year the most recent amendment to the American’s with Disabilities Act went into effect. This amendment stated that all public pools and spas must follow ADA regulations concerning the building of pools and the placement of pool lifts. The rules went into effect March 15, 2011 and businesses had one year to comply with the new regulations. But due to protests by owners about “undue hardship” beginning a few months ago, a sixty-day stay was passed.
2012-Throughout my time here I have done a lot of work with the Ball State’s disability awareness group. I have continued to ensure that others like me, both current students and incoming freshmen, know the lengths to which Ball State’s Disabled Student Services office goes for students with disabilities. I have also continued to learn much about the struggle for equality that made my being here possible.
My most recent lesson came while watching the documentary Lives Worth Living, chronicling the civil rights movement that brought about the passing of the ADA. Until that moment I feel I truly had been perfectly ignorant of the fight that had to take place in order for me to be where I am today. I now understand how lucky I am to have been born in exactly the circumstances that I was. My gratitude for the freedoms I have grows every day. I am proud to say that I am one of fifty-two million Americans living with a disability. I am also part of the six percent of college students with a disability. And it is because of legislation like the ADA and universities like Ball State that I am here and thriving.
But I am aware that there is still much work to be done. Barriers still exist as do prejudice and stigmas about what it means to be a person with a disability in an able bodied world. These things will in all likelihood always exist to an extent. But I plan on doing all I can to make them invalid.
*The following is my humble attempt to own some of the language that is used on a regular basis to describe myself and others in positions similar to mine so that it loses the power to insult and demean us as a culture. I am attempting to own the language before it owns me.
I am wheelchair bound.
I was wheelchair bound last week.
I was wheelchair bound when I got
out of the shower last night.
I will be wheelchair bound when I
wake up in the morning.
And once I am in my wheelchair
I will be bound for Spanish class,
and then lunch.
After that I will be bound for the bus,
and my apartment to pack.
Then I’m bound for home.
I’m bound for family and free time.
I’m bound for love and home-cooked food.
Too soon, I’ll be bound for Muncie again.
Bound for classes and projects,
bound for deadlines and due dates.
I’m bound to be overworked.
I’m bound to be underfed.
I’m bound to wonder
where the time went
when my time here finally ends.
Soon I’ll be bound for graduation,
bound for job searches and future planning,
(and wedding planning?)
Who knows? What I do know
is that I’m not bound for any of the rest
if I’m not wheelchair bound first.