RELENTLESS ACTIVISM: EXCERPTS FROM LETTERS AND SPEECHES

RELENTLESS ACTIVISM: EXCERPTS FROM LETTERS AND SPEECHES
Tyler Fihe

Santa Cruz, CA

[Editor's note: Tyler Fihe presented much of this work at the Narrating dis/Ability conference in Syracuse, NY, April, 2002. The letters and speeches presented here are a small part of Tyler's ongoing writing and presenting on behalf of himself and other people with disabilities.]

LETTER TO STATE SENATOR BRUCE MCPHERSON, APRIL 20, 2000

Dear Senator McPherson,

I saw and talked with you at the legislative breakfast on April 14th at Seascape Golf Club. When you came around greeting people, I spoke to you by typing, "When will you make the regional center support fc?" My mother told me afterwards that you know nothing about what fc is. She said that maybe I should educate you so you know more about what I'm talking about.

Facilitated Communication is a way of providing physical support to someone’s arm, shoulder, or hand so the person can type their thoughts or feelings. I have been using this way of communicating for nine and a half years. My mother helped me learn how to do this and has been trying to teach others to do it with me so I would have more people to talk to besides her. Although I live my mother a lot, I’m fourteen years old now and I need to talk to other people. You must remember what it feels like to be a fourteen-year-old boy who wants to get out and discover the world without his mother looking over his shoulder. I think it is very important for other people to learn how to facilitate the communication of people who have difficulty talking. I think the regional center should be training people to do facilitated communication. They are always saying that they provide training in self-advocacy, but how can people speak out for themselves if they have no means of communicating? You should talk to Santi Rogers about this. He needs to hear from you.

I’m sending you a picture of me so you will remember me. I am also sending you a poem I wrote for the science fair project that I did at Mission Hill Junior High. I would like to know what you think of facilitated communication. I also want to know if you think the regional center should provide training in facilitated communication so more people with disabilities had voices. Thank you for listening to my concerns.

Sincerely,
Tyler Fihe

ENCLOSED POEM

ME

Trapped in my mind, trapped in my body.
Like looking through the hour glass every minute of
everyday
The darkness clouds my mind.
It covers my thoughts so I cannot speak.

I dream to type independently.
I am instead forced to utter thoughts with no meaning,
like an infant
The silence in the recesses of my mind causes much
sadness,
For those parts are dead to me forever,
like a wasteland someone lost a map to;
So are my thoughts,
on… off… like a switch.

The life I dare to lead swallows me up,
Like a giant pillow where success is a word
unknown in my verbal dictionary.
Yet somehow, for some reason,
I still dream of better days,
better moments even,
where I can fearlessly walk, talk and breathe,
without shame.

PRESENTATION TO THE SAN ANDREAS REGIONAL BOARD, MAY 14, 2000

To the San Andreas Regional Center Board Members,

The reason I have come here tonight is to talk to you about the need for more of your consumers to be given the opportunity to be able to try communicating through facilitated communication. Only 9 years ago did I begin to learn to communicate through typing and it dramatically changed my life. Before typing I could not tell anyone what I felt or thought. I was so isolated I thought I would go crazy. No one knew what I wanted because they could only guess. You can only imagine what a living hell this must be for people like me who have no voice.

Imagine for a moment that suddenly you have a heart attack and you have lost your ability to talk and use your body. Then the people around you assume that you have also lost the ability to think and feel. The people around you start talking about you like you no longer exist. They start guessing about what you want or don’t want, like or don’t like. You scream at them inside to find a way to help you communicate, but your screams fall on deaf ears and you sit in the hell of silence, helpless and alone.

This hell doesn’t have to exist any longer for many people like me. There is a way out. The way rests in your hands. You can find ways to give opportunities for consumers to communicate by typing if you can take your role as a board member very seriously. You hold many people lives in the palm of your hands by the decisions you make. I hope that my words have let your hears open to make the opportunity for consumers to be able to try facilitated communication.

Your most humblest of consumers,
Tyler Fihe

LETTER TO IEP TEAM, MAY 29, 2000

To the people on my IEP team,

I would like to share with you my thoughts on my future plans. I would like to go to college after I finish high school. After college, I want to help people like me find their voices and help them change the systems trying to serve them.

Here are the things I think are most important for me to learn at6 Santa Cruz High School next year:
·    I want to be an independent typer so I can be less dependent on my assistant.
·    I enjoy telling people my thoughts on things so I might enjoy writing articles for the school newspaper.
·    I would like to be able to have private conversations with students.
·    I want to be able to do the same work as the other kids in my class.
·    I want to be respected for what I can do and not told what I can’t do.
·    I want to be a learner who loves to share what he has learned with other students.
·    I want to continue reading my writing because I think this will help me learn to talk.

You know that I have been working very hard this year at controlling my movements and my sounds. I know that I can continue to do this with the help of everyone’s support. I was very lucky to have a wonderful assistant Stephanie who really helped me be successful. I also had the support of many teachers and people in the school. I must especially thank Janna Woods for her never ending faith in my abilities. This has truly been one of my best years at school. Thank you all for your hard work and deep caring. I am most grateful for the year I had at Mission Hill Junior High.

Thank you all so much,
Tyler Fihe

SPEECH TO GRADUATE SPEECH THERAPY CLASS, SAN JOSE STATE UNIVERSITY, OCTOBER 22, 2000

You probably think you know a lot about me from my mother, but there is much more to tell. The thing you really must know is that I have a body that is very hard to live in most of the time. My body is always firing off movements and sounds from my mouth that I can’t control. They come and go and I just have to let them out. This makes it very embarrassing to live in such an unpredictable body. This also makes it hard for me to make friends. Most kids don’t have the time or patience to want to try to get to know me because I can’t communicate like they can and they don’t understand my body movements.

The thing that has made my life the most sane is being able to type using facilitated communication. You see, if I couldn’t tell people my feelings and thoughts I think I would go crazy. People need to understand that non-talking people have a lot to say and we need a way to say it. That is why there need to be more opportunities for people who can’t speak to try facilitated communication.

What also needs to happen is that we need more speech therapists who are willing to learn how to do facilitated communication to help people communicate. I hope that by hearing my story today you will be motivated to try to learn more about this way of communicating and so more people like me can be helped. Thank you for asking me to share my thoughts with you today.

PRESENTATION AT U.C. SANTA CRUZ, JUNE 29, 2002

    Hi…my name is Tyler Fihe. Your teacher asked me to come here to talk to you today about how it’s been for me being included in regular classes since kindergarten.

    I think what stands out most in my mind is how important it has been to be considered a member of the class and not just a kid with special needs coming to visit the class like an alien from outer space visiting Earth. Where I felt the most welcomed by a teacher was when they spoke directly to me thinking I understood everything said and not just talking to my aide as if I wasn’t there. This modeled for the other students in the class how to treat me as well. I also like being considered a human being like everybody else despite the mask of autism I wear on this body.

    You know what it feels like walking into a place for the first time and not knowing anybody. Gradually you start talking to people and feeling more comfortable that you’ve made a connection. Unfortunately, I don’t have an easy way to carry on a conversation with people, so it takes a lot longer. Here is where a regular education teacher can make things move a lot faster. The teacher by having conversations with me directly can model for the rest of the students how to do this, so it feels more comfortable and relaxed. Then I get to talk to more kids, which makes me a happy camper.

    I think the hardest part of inclusion has been when the teacher hasn’t believed that the typing was my voice. I don’t know if any of you can fully understand what this might feel like. It’s like talking to a wall. There is no way to crack it with your words. I have experienced this feeling many times and it never seems to get easy. The thing that helps me adjust to these walls of disbelief is the wonderful people who do believe my typing and stand beside me as I continue to throw my voice to the wall.

    I would like to conclude with a short story. It’s about a young boy who just wanted to be in the world with other kids. He tried and tried, but no kids wanted to be his friend for very long because he couldn’t talk like they could and he couldn’t play like they could. The only chance he had to be around kids was in regular classes, so he could try to talk to them through typing. Without this exposure the young boy would have very little opportunity to experience the world of kids and their conversations, which gives the young boy lots of information about how to be in the world of people.

    This young boy did have the opportunity to be in regular classes, and now he can say that he knows a lot about kids and how they operate. Now he is a teenager in regular classes and he is learning about the ways of teenagers and how they operate. Although friendships outside of school haven’t happened yet, this teenager is feeling most welcomed at his high school by other kids and most teachers. The thing that has helped this boy grow to accept his limitations has been the opportunity to attend classes with all the other kids instead of being isolated in classrooms only for kids with challenging disabilities.

    This concludes my prepared talk. Now if any of you have questions for me, you may ask them now.