Personal Accounts of Being a University Student with HFA/AS

To Have A Voice Is To Have A Choice!!
Sharisa Joy Kochmeister
February, 2003

When disability, as race and gender before it, is examined and illuminated, it can be seen beyond the personal misfortune it is often claimed to be.
If it is perceived as deviant, compared to some prized norm arising from cultural expectations of how humans should look and act, it overwhelms
the person's other, less visible aspects.

From "A Matter of Dignity" by Andrew Potok

Whatever course you have chosen for yourself,
it will not be a chore but an adventure
if you bring to it
a sense of the glory of striving,
if your sights are set far above
the merely secure and mediocre.

David Sarnoff

Discovery consists of seeing what everybody has seen
and thinking what nobody has thought.

Albert Szent-Gyorgyi

Even the stars in the heavens above us
are not what they appear to be!

Sharisa Joy Kochmeister

Hello everyone!!! Many of you may not know me and may be wondering: who exactly am I? Well, first of all, as you probably know by now, my name is Sharisa Joy Kochmeister, but I prefer to just be known as Sharisa Joy. What I would like to make clear, however, is not so much who I am, but why I choose to share. The words you're about to read were written by me as part of my ongoing effort to shatter the walls that separate me from you and us all from each other in so very many ways. I will be telling you a little about my life before and after I became able to communicate and about what inclusion on all levels has meant for me, because to me, inclusion should be an integral piece of EVERY aspect of all of our lives.
What amazes me is that some still call full inclusion a "fad." To my mind, this is merely their way of denying that it is the law in this country, both on federal and state levels. Sign language was also once considered a "fad," as were many currently popular treatments in such fields as psychiatry, psychology, medicine, etc.

Inclusion is here to stay - and so am I!!!!

One of my personal heroes, Helen Keller, once said: "One can never consent to creep when one feels an impulse to soar." I came here today because I feel that impulse so strongly, and spent many years creeping before my life opened up and I began to follow that impulse. I want to share that impulse to soar with as many people as I can because I know what it feels like to live without light and hope and now I know how hope can free a person's spirit and mind.
"Hope arouses," as William Sloan Coffin, Jr. so eloquently put it, "as nothing else can arouse, a passion for the possible." What I have done in the past nine years was deemed by many to be impossible, and has often been referred to as miraculous. I want to make it clear that neither it nor I are miracles. Both are possible because of extremely hard work and sheer force of will. In coming this far from where I was and still conceivably could be, I focus on the words of the great American patriot, Thomas Paine, who stated: "The harder the conflict, the more glorious the triumph. What we obtain too cheap, we esteem too lightly; 'tis dearness only that gives everything its value."
When I decided that I was willing to work and fight my way out of my prison to freedom, I had to overcome evaluations that contained such pontifical statements as: "No hope! Uneducable. No attention span. Her IQ is that of an infant. She should be institutionalized. She is and will always be incapable of communicating in any way." For pity's sake, what did they expect from a non-verbal, extremely withdrawn and abused child when they only used such indecently idiotic methodology as verbal IQ tests and observation of behavior in a self-contained special school? Hell, just look around you anytime if you want to see people who would test poorly if all we chose to do were to observe their idiosyncratic, eccentric behaviors in environments that stifle individuality!!!
When I was younger, people looked at me and often observed only an empty shell - a real "ZERO" in the greater scheme of things. When I began to communicate in October, 1991, this perception slowly began to change. In the years that have followed, I have changed also - quite dramatically. Given the opportunity to communicate, I began to shed the darkness that surrounded me. Ursula LeGuin, a great science fiction author said it quite well in what sounds like such an accurate description of my breakthrough that I might have written it myself: "Imagine darkness. In the darkness that faces outward from the sun a mute spirit awoke."
Not only did my spirit and mind awaken, but they began to send out a wake-up call to all around me, a call that continues to emanate as I continue to progress. That call brought me into the light and brings me here today and will continue to propel me forward on an incredible journey through an unimagined and often unimaginable life. If this makes me a "HERO" to some, I accept that role because then I know I may be setting an example for others to follow. Trying to open minds is my life story - however when someone has it padlocked and barred in ways that would defy Houdini, it often takes a miracle to get in. But even if I'm not a miracle, I still believe in them, so I guess I'll keep trying to shatter those bars, pick those padlocks and open those tightly shut minds.
Because I am still almost entirely unable to speak, I am forced to SLOWLY type all of my thoughts and feelings, even the most private ones. Although typing has shattered countless walls for me, it is still a torturously slow process and there are many days I would gladly give up my legs for the opportunity to speak the messages of my mind and heart and soul. I do not, however have this option, so I rely on typing as my "ENABLER." It allows me to communicate with and exist in a world where I once was and would otherwise still be a total stranger. It permits me to prove I am alive, smart, and able to think, understand, feel, hope, plan, hurt and dream just like the "verbalizers" of this world. I LOVE getting strong reactions of delight, realization, surprise or shock, and know that what I've said is meaningful and important and has made an impact. I cause people to think and help them to change and grow. I make them forget what they already believe they know and alter their previously learned perceptions of disability and reality. I thus accomplish my greatest goal - being an instigator for change and growth. Some would refer to me as a revolutionary of sorts. At best, I will admit to the fact that what I'm doing with my life and plan on continuing to do is very revolutionary for a person with my types and severities of disabilities. For me, however, it's the only choice I have in order to remain true to my own conscience and the inner voice that makes me who and what I am.
Since I began to communicate via typing, I have shattered many walls, both inside myself and in the world around me. I've had to overcome many prejudices, both from others towards people with disabilities as well as my own towards those who don't have any labeled disabilities. I've had to fight for the right to the education I'm supposedly guaranteed by law; for the opportunity to be heard by the legal system; and for the chance to overcome the beliefs of many skeptical and cynical individuals within the media and the medical and educational communities. This has taken tremendous energy and incredible intestinal fortitude, in addition to a streak of sheer stubborn determination not to let anyone get the better of me or return me to the life in which I had been trapped.
When I first started to type, I had already spent in excess of 11 years with no effective means of communication. I couldn't nod, speak, or use sign language effectively because of my "dyspraxia." I compare dyspraxia to inertia. I do so because inertia, as I understand it, is the inability to move unless something else makes it possible. I easily relate to this. Dyspraxia is best defined in laymen's terms as an inability to make one's muscles do what one wants without great difficulty or assistance. Sometimes, it makes me "freeze in my tracks" or "forget" how to move, walk, chew, or swallow. It makes it difficult to do something as seemingly simple as nodding my head or shaping my fingers for sign language or walking downstairs alternating feet or using my eye muscles properly or my mouth, tongue, throat and facial muscles to speak clearly.
I had also learned how to live DOWN to expectations of others, including teachers, medical and therapy professionals, so-called friends, and family. People totally believed that I was "hopelessly retarded" because I couldn't express myself or respond in any acceptable way ... and to all outward appearances, that's exactly what I was ... but "NOT BEING ABLE TO SPEAK IS NOT THE SAME AS NOT HAVING ANYTHING TO SAY!!!!"
When I finally started communicating, the "communication chasm" I had to cross was so wide, I needed to take a "quantum leap" merely to begin the long journey upon which I was about to embark. Comparable to my "leap", but seemingly far more difficult to achieve, is the one other people had to make (and often still do) to believe in me. How exactly did I prove myself? When I started typing, numerous "experts" in communication, education, psychology, and neurology refused to believe the words were my own. They forced me to prove myself time and again, through tremendously upsetting, anxiety-provoking formal and informal tests specifically designed to prove that people doing what I did were not really the ones communicating.
Despite their best efforts, I passed every test thrown at me both with and without physical support. In spite of the extensive damage to my psyche, I somehow managed to overcome all of this and become the person I am today - respected by others for my victory against enormous odds and the subject of countless anecdotes, media reports and even documentaries.
People should never be seen or treated as labels. I refuse to be pigeonholed by my disabilities and my continued success ensures that I will not be. And yet, some people would still prefer to see me return to my world of silent darkness. Why, oh why can't these fools just allow us "non-verbal" people to be people rather than trying to depict and keep us as some kind of non-communicative, unthinking, unfeeling "vegetables?" It's good to know that people can change their perceptions through exposure to new people and concepts. It is, nevertheless, sad that some people go through life with the blinders and earplugs of prejudice so firmly in place. It's even worse when they try to impose those beliefs on society; innocent people get irreparably hurt.
While I know that not all people with autism are mentally retarded, in my own case and in some others, there is/was a level of functional retardation that delayed me as well as a motor planning disorder and cerebral palsy which tended at times to make me appear "retarded" in behavior and affect. I feel deep personal shame about having acted retarded to live DOWN to expectations; even though it was the safest thing for me at that time. Even today, as an accepted 3rd year student in a very difficult private university, there are times my behaviors and affect might cause people who don't know my true intelligence to think I seem "retarded." The only answer I can see to this type of "tunnel vision" is to attempt to educate others to see past surface behaviors and not to blanketly assume incompetence when true competence might indeed be present. The benefit of the doubt is often the best gift we humans can give to other humans... I've even learned to give it to people I consider to be "attitudinally challenged."
Truly, my father and I have been through Hell and back in trying to fight for my rights. And the fight just never seems to totally end, especially in light of the fact that the State of Colorado has refused to provide me with services for the developmentally disabled. They have declared that I am NOT developmentally disabled because their "experts" found my intelligence levels to be far too high for their standards on tests that I took independently just as recently as November 2000!!! For pity's sake, I was classified as developmentally disabled in New York - did moving 2000 miles somehow magically change that? So what if my IQ is too high - what about my many deficits and needs for total assistance in the areas of daily living and survival skills as a result of several disabling conditions which are classified as developmental disabilities under federal law???? It seems that one needs to be retarded in this state just to be able to get on waiting lists for necessary services, or is perhaps the system retarded that sets up IQ or lack of it as a measure of developmental disability and need? I have to wonder at the motives of people who challenge either my intelligence or my disabilities... exactly what do they want me to be???? I have already jumped through countless fiery hoops to get to where I am today. I am honestly sick and tired of being treated as a human guinea pig or lab rat ... it is a clear violation of my human rights and one that MUST stop NOW!!!! What exactly will I be asked to prove next - that I am actually HUMAN????!!!! YEESH!!!! Enough of my anger at the flawed system - I promised you all that I would talk about inclusion, so here is my personal experience with it.
Since I began communicating in 1991, I've taken many difficult and dangerous leaps in order to conquer walls in such tricky areas as independence, emotional maturity, socialization skills, and trust. What was probably my most difficult leap was from "retarded" school to accelerated seventh grade classes in a regular junior high school. And one short year later - high school, which I finished in a mere three years! High school was, indeed, a learning experience on EVERY level and for everyone involved. I had to modify what others regarded as bizarre behavior in order to fit in with my peers, be accepted by my teachers and administrators, and not get kicked out of classrooms, which happened more than once, or suspended from school, which actually happened once. I also had to manage to stay true to myself while doing this, a daunting task for anyone, to be sure. That I did so, and still managed to become seen as a role model, win academic and social awards, become a published author, performed songwriter, acclaimed public speaker, and honors graduate (3.9+ cumulative average) is testimony to my sheer force of will when it comes to proving myself and maintaining my individuality at one and the same time.
I received President Clinton's award for "Significant Community Service" at my high school graduation, and was also commended by New York State's Developmental Disabilities Planning Council and the New York State Self Advocacy Society for my advocacy efforts on behalf of people with disabilities. I passed the college English Entrance Exam with HIGH HONORS and was the only incoming student at SUNY Rockland ever to be offered an Independent Learning Contract in Freshman Writing because my score was so HIGH and they felt that my writing skills were already so finely honed! In the fall of 1997, I leapt into college at SUNY Rockland and have been almost a straight A student thus far for five years at both Rockland and Denver University, despite initial obstacles such as the need for extended time and a quiet setting for testing. Sadly, when I got straight As on my first several tests without a proctor, certain cynical, skeptical fools once again assumed that my father might be doing the work instead of me. We both found this almost laughable, because he was never better than a B student in high school or college and I graduated high school with honors and an A+ average. I'm very proud to say that all tests subsequently proctored resulted in A's, and I now almost invariably take my tests in the classroom in full view of professors and classmates, and do even better, often finishing before many other students, and getting A's and A pluses on nearly every exam I've taken since.
I have been both the victim of 12 years of total exclusion and four years of so-so inclusion in education and the extremely happy and fortunate beneficiary of in excess of five years of superior inclusion in college. I publicly praise my colleges, the State University of New York at Rockland and the University of Denver for treating me with respect and dignity and making me feel welcome, successful and fully included as a member of both the academic and social communities. I've neither asked for nor received preferential treatment and I enjoy being viewed as and treated almost exactly like every other student in both regular and honors program classes, with few brief exceptions to this rule ... for instance, they say I bring up the test curve in my classes and inspire other students to do better, and several times I've even been asked to guest lecture my classes. I have gained greater self-esteem, self-confidence and pride, enabling me to achieve beyond even my own original high expectations and internal standards. My professors and classmates befriend and accept me as the person I am, eccentricities and all. They no more expect me to conform to their behavior than I expect them to conform to mine. We are learning from each other, and that's the way it SHOULD BE!
I have been a member, secretary, vice-president and president of the Political Science/Pre-Law Association, a writer for the student newspaper, "The Outlook;" and a contributing writer, member of the editorial staff and co-editor-in-chief of the college literary magazine, "Impulse," at SUNY Rockland and was chosen for "Who's Who in American Junior Colleges." In March of 1998, during my freshman year, I was chosen to represent Rockland at a prestigious conference at the Center for the Study of the Presidency in Washington, D.C. My attendance as the only student there with a noticeable disability was a disturbing surprise to me, just as I'm sure that I was a surprise to those who met and spoke with me.
After all, most of the "verbalizers" of this world never even come into contact with a person who needs to use a keyboard device to communicate. In this very impatient society of ours, few people seem to have the time to wait for me to finish expressing myself through slow, one-fingered typing before they leave my presence. Yet there I was, and here I am on my continuing incredible odyssey. All this and I'm still only 24! It gets more amazing every day just being me!
Shortly thereafter, I was one of a select group of 50 young people with disabilities chosen from many hundreds of applicants to participate in government-sponsored leadership training in June of 1998 in Washington once again. This time, I actually got to meet President Clinton by invitation at the White House (before the Lewinsky scandal, thank goodness!) and have my photo taken with him and with Senator Tom Harkin (sponsor of the IDEA) when I ate lunch at the Senate Office Building. Despite all these amazing and prestigious events, however, Id have to say that the single coolest thing that happened in my career at SUNY Rockland occurred in May of 1999 when I was chosen to receive an "Outstanding Student Service Award" for my extracurricular accomplishments by my fellow students and professors. I was honored at a luncheon and awards ceremony at which I was the featured honoree, and was asked to deliver a speech to everyone present ... including my friends and family! My reaction at receiving such a prestigious award from my PEERS could best be summed up in one word - OUTSTANDING!!!!
I received my Associate's Degree in Humanities and Social Sciences with honors from SUNY Rockland in May of 2000, and in September of 2000 I began the rather brave excursion of being a transfer student at Denver University, majoring in Cognitive Sciences and minoring in English. My GPA for first quarter was 4.0 and I set the curve on both the midterm and final exams in my Psychology of Learning course. Second quarter I took Cognitive Neuropsychology, and Literature and Music in the Jazz Age. I had to withdraw from third quarter classes because of a very nasty intestinal illness, which kept me hospitalized for nearly four weeks in March and April, but I returned to school in the summer, and got A's in Psychology and Mythology classes. I have changed my major to Psychology and my minor to Sociology, and have done very well in the 2001-2 and 2002-3 academic years despite some more illnesses that curtailed my schedule somewhat.
The courses I take, the people with whom I interact, the lessons I learn - all combine to enrich my life and broaden my horizons and expand my goals.
I believe that within reason, there is NOTHING I can't do if I really set my mind to it. The future is open and bright before me and all I really need to be is ME!
My original post-college plan was law school and it was my ambition to be a Human Rights attorney and judge, until I decided that I disliked lawyers way too much to ever become one of THEM. Now, I'm well on my way to my new goal of being a neuropsychological researcher and winning a Nobel Prize for brain injury research; and better yet, I love every minute of it!! I may or may not fulfill those goals, I may or may not change my mind about my career, I may or may not marry and have kids, but ultimately I will do anything my heart desires and to which I aspire ... ultimately, that's all up to me, just as it should be to everyone!
What I try to carry everywhere I go is my own unique example of what might lie behind what people think they see if they will only open their eyes, ears, hearts, minds and souls to what is truly possible. As I tell everyone, people only need to be themselves and allow themselves to really get to know me in order for me to feel comfortable enough and safe enough and trusting enough and emotionally secure enough to be myself and allow myself to know them. I'm also very lucky that I can hear and extremely fortunate to have communication devices of my own that enable me to "speak." I believe these should be made available to all people with communication and/or hearing impairments. They should be equipped with voice output in a variety of voices as well as visual and/or printed output in case the person to whom you are communicating also has a hearing impairment. Children should be given them and trained in how to use them at the earliest age possible, and similar training should be provided to their family members, peers, teachers, and all other caregivers who would be working with them. It is hard enough to live in silence without anybody or anything making it harder or more uncomfortable in any way. Technology, education, inclusivity, increased awareness, and understanding are the best answers to making disabilities such as these less disabling. The only real answer is to enable; anything less only disables. I can state unequivocally that anyone who is denied these opportunities is denied both the right to communication of their own and a life that surpasses any they might have without that communication.

Socrates believed that "The way to gain a good reputation is to endeavor to be what you desire to appear."

Henry Miller said: "Example moves the world more than doctrine."

Paul G. Hawken states that: "We lead by being human. We do not lead by being corporate, professional, or institutional."

B.C. Forbes believed that: "Difficulties should act as a tonic. They should spur us to greater exertion."

These days, I have unlearned most of my autistic-like behaviors and am much more open and friendly, can act with more decorum, and continuously try to overcome my terror of trusting in order to let more people into my world. College has helped me learn to do this more and more.
These past few years have been, for me, a time of awesome ADVANCES! Many incredible things have happened and continue to happen in my life, and the question of how I continue to do and accomplish things has been asked of me and by me again and again. Many of these advances were accompanied by excruciating effort, struggle, anguish, anxiety, fear, and pain. Others have been accompanied by amazing hope, joy, triumph, pride, and a super sense of accomplishment. It is my goal to continue on that latter path.
My particular roads were by no means "well-beaten paths." In fact, there were many times I knew I was the first and possibly the only traveler ever to use these particular, peculiar byways upon which I suddenly found myself. While I was, in one sense, like the famous astronaut, Neil Armstrong, setting his feet on the previously pristine surface of the moon, I was also, quite unlike him by virtue of the fact that I had no one at all to observe my small steps or soften my large falls. During the past few years, however, my audience has finally arrived and my fellow travelers have, at long last, appeared and increased. They continue to do so and my perilous pathways and hazardous highways continue to merge into smooth, straight, safe "superhighways" that lead me to the strangest of places that I never expected to visit!!!! What's even stranger is that those strange places are beginning to look and feel just like "home" to me.
I can't help but wonder what intrepid, intricate and intriguing turns my journey will take in the next years ahead.
It has definitely been an amazing roller-coaster ride, but at least these days it's mostly fun instead of frightening, and I believe the trend will continue in that direction!
I fervently hope that someday when people look back at me as a classmate, a speaker and presenter, or whatever other role I may yet play in this life, they will reflect not on the strangeness of my disabilities but on my excellent reputation, the examples I set, the uniqueness of my humanity, my ability to overcome my own barriers as well as those of society, and the impact my presence has had on each of them and their lives. That is certainly how I will think about all of the people with whom I come in contact in my life.
Thank you for listening and trying to see and accept me as not just an expert or an anomaly, but as a real person. Thank you also for joining me on this leg of my journey and allowing me to share my gifts with you and permitting me to continue to explain and educate!!!!

Copyright 2003
Sharisa Joy Kochmeister.
All rights reserved.
Used with the express consent of the author.

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