January 23, 2013

Most of my friends are pregnant or have had children. I really want to start a family, but no chance of that happening soon. I’ve only just recently discovered the fun of casual dating. At least I get to live with one.

My two roommates, a young married couple, and their beautiful children–the boy is twenty two months and the girl is just over a month–have been such a blessing to my life. That little boy is getting so big. I love how he can’t go to bed until he gives his roommate a kiss goodnight. Sometimed I think he thinks I’m his live in “manny” or something, other times maybe his adopted older brother.

Sometimes he’ll crawl into my lap while we’re watching a movie or after he’s grown bored of making a mess in the living room and just cuddle up against me.

When I’m holding him against my chest in moments such as that, my heart beats with more love than I knew possible and I am reminded of my yearning to one day have a child of my own.


I Choose to Live

January 23, 2013

I was given another opportunity to speak up for the disability community today.

We were discussing the ethics of abortion and genetic screening of the unborn fetus in philosophy class today. We ended up debating the ethics of aborting a fetus with a known disability or genetic disorder.

I could not keep my mouth shut. Not one to sit quietly while discussion treads upon the fine line, I spoke up. I looked at my classmates as I explained the nature of my disease and the effects it had on myself, my parents, my siblings and my friends.

I continued elaborately explaining how the people I’ve worked with and met as a volunteer at a therapy center for children with developmental disabilities, a tutor at my state’s school for the deaf and an advocate with my state’s coalition of self-advocates has shaped my views. From the woman with no hands who paints better than I ever could to the man who could not hear the beautiful music he created. From my deaf mentor whose own disability inspires his scientific curiosity as a professor of medicine to the wheelchair bound law student I recently had the privilege of getting to know over coffee.

These amazing people did not get to choose the hand they were dealt, yet they play one hell of a game anyway. To even think that they could be denied the chance to shine because society has not yet come to terms with reality brings tears to my eye and my heart. The reality is that disability does not play favorites. Everyone will experience disability in one way or another in their lifetime.

When asked by one of my classmates what I would have chose knowing I’d be born with this horrible disease, I responded simply,

“I Choose to Live.”

Not So Special Ed

January 13, 2013

I was a “special Eddy” right from the very beginning of my primary education. Having both visual and hearing impairments, I was given an early intervention specialist who specialized in students with visual impairment. So began my journey learning Braille and some basic sign language. By second grade it had become apparent that my hearing was dropping rapidly while my vision was stable (and, to this day, still is.) I was referred to a specialist that focused on students with hearing impairment while still learning Braille with the other specialist. The hearing specialist taught me both manual (sign language) and oral (speaking verbally and lipreading) methods of communication. This is called the “comprehensive deaf education” module. I was giving adaptive listening equipment for classes until I could no longer hear well enough to make use of it. By then I was introduced to a woman who would type out the lectures for each class.

Looking back, she, my original typist, was a wonderful woman, though, her skills as a typist were not of professional grade (professional live captioners have made a world of difference for me in college.) I often missed many things in class, such as a teacher cracking a joke. This had the effect of isolating me further from my peers. Though her efforts tore down some of the communication barriers I faced in class, I was deeply ashamed of her. Her presence was an embarrassment to me and served as further proof to my peers that I was “different,” isolating me further and further into a cold, dark and lonely cavern of depression and self-hate.

I should have been provided with a professional captioner, one who proved qualified through professional certification. Instead I was given a random woman pulled off the streets who followed me to each class. The price paid to save a few bucks on an accommodation I was legally entitled to under the Americans with Disabilities Act was my self-esteem. I felt like one of my mentally handicapped peers that required an adult to sit with them through class to prevent them from acting out. By God, if they were going to treat me like a retard (and I apologize for using that term) then I would act like one. And act out I did. I put on a show so marvelous and believable that I earned an all expense paid trip to the American Nutcase Awards where I was nominated for every psychological condition in the book, winning only one. First prize for my performance as Best Wild Child was another all expense paid trip, this one to meet the famed Therapist and have my hand print paved into the Traumatized Child Walk of Fame.

I would end up going through several typists after my return from, some better than others, as well as several deaf education specialists before my two years at Oregon School for the Deaf and after my return to public school. My blind education specialist was the same from kindergarten to my senior year of high school, though, I didn’t see much of her after returning from OSD.

Special education classes added even more fuel to the fire of my disdain for the system. It saddens me to admit that what the special education system is often made out to be and what it actually is are worlds apart. Whether or not it was ever intended to give students with handicaps an equal opportunity in education by accommodating weaknesses and encouraging growth in areas where the student shows strength, that is not the reality of it. Special education is a warehouse where dreams come to be broken and smashed into oblivion. In special education, students are not challenged intellectually, rather they are given subpar educational opportunities, allowing them to pass with the bare minimum in remedial classes. Early on, students are taught through the actions of their teachers to settle. Mediocre is perfectly acceptable in this environment. Just getting through is the goal of each individual education plan. The concept of higher education is rarely spoken of beyond trade school or apprenticeships. And where do you think budget cuts are made first? You guessed it, special education programs and schools for the deaf and the blind. That is essentially the government saying, and please pardon my language, “Fuck you!” Through their actions and government spending they are telling children and adolescents with handicaps that our education is not a priority to them. They are saying that we should be seen and not heard. A man without an education is a slave to his government and society’s expectations for him.

And when one’s own government doesn’t believe in you enough to invest in your education; when one’s own school board of directors do not believe in you enough to provide and pay for adequate accommodations as the law requires them to; when one’s own teachers do not believe in you enough to challenge you and push you to be all that you can be, then tell me, dear readers, why should you believe in yourself?

I was grossly under prepared to take on college. I failed the same basic math course more times than I care to admit. For the last three years, I’ve wandered in an out of classes feeling inadequate, less than human even, because I was not given an equal opportunity to succeed. Because I was given less than my peers in terms of a proper primary education, I viewed myself as less than my peers in terms of a human being. The idea that I might actually be an intelligent and capable human being was foreign to me until very recently. My last term was a turning point in which I aced every last one of my courses. And this term? Thirteen credit hours–four courses, including an introductory ballroom dance class where I am once again defying expectations–and three separate volunteer jobs; supervising activities at a center for children with developmental delays who remind me of my own childhood, tutoring at the very school for the deaf where I was once a student, and advocating for equal opportunities for people with handicaps in public forums, conferences and meetings with other like minded individuals with handicaps. Once I do transfer to a four year college, I’ll be declaring a philosophy major and a biology minor as a pre-medical student.

The little boy who was all set up to fail would go on to become not only a physician, but a mentor and a role model for which other students with handicaps could aspire to be like.

Wouldn’t that make for a better ending to this story?

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