This article originally appeared in Vol. 2 No. 4 (Aug. 1994) of the Facilitated Communication Digest, [pp. 6-8].
Editor's note: This letter was sent to Steve Drake, and is reproduced with Sharisa Kochmeister's permission. Sharisa, who began using facilitated communication over two years ago, now types without physical support; her journey toward physical independence in typing is one of several shown it the videotape Every Step of the Way, available from the Facilitated Communication Institute. Dear Steve,
It has been an incredibly difficult year for me. My nearly-constant struggle for acceptance and respect has often taken far too much time and energy. I know just how much strength & perseverance it has required to avoid the doubleedged sword of disability and discrimination. It has been like a constant uphill wind-sprint many days -- horribly draining and exhausting, and I have gotten incredibly stressed and depressed way too often.
I feel I have already proven myself over and over many times for many people in many settings; yet there are still some stubborn, narrow-minded, conniving people who seek to deny that I am real and have even tried to trick and/or coerce me into testing of a negative, confrontational manner. Most of these people have never heard or read any reports about previous double-blind testing I have already undergone by both private and court-appointed professionals and school personnel, and/or my actual intelligence and abilities. This remains true although there are several unbiased, esteemed medical and educational professionals who have been and are more than ready and willing to attest to my authenticity, and although the family court of Rockland County has accepted it. Despite this, some professionals who have heard still refuse to believe, regardless of the fact that most of my testing has been done by people who were non- believers in FC prior to testing me. I thought that independent typing would be enough to satisfy these skeptics, but their "tunnel vision" is obviously a very powerful affliction.
Why is this? In my opinion, it is mostly because of a few narrow- minded, blind, self-appointed "experts" who regard it as their obligation to try to prove that I'm hopelessly autistic, retarded, and oblivious to the world rather than dare to admit that I am both intelligent and sentient. They prefer to view me as some trained circus animal performing tricks rather than as a real person with real needs and thoughts, beliefs and dreams. What in God's name is their problem? Am I that much of a threat to them and their smugly apathetic complacency? How is that possible when I am merely a 15-year-old girl with cerebral palsy, global apraxia and an awful history of mistreatment? Theirs is a very subtle and insidious type of abuse - perhaps unseen, maybe unintentional; but definitely neither unfelt nor undamaging. This is especially sad because people in their positions should be fairminded and willing to accept the truth when it is presented to them.
Maybe facilitated communication isn't for everyone, but does this mean it should be "abandoned completely" by everyone, as has been so publicly recommended? What would happen to people such as myself who have been immeasurably helped by it? What about others it might still help? Are we so inconsequential to these "experts" that they would, in effect, "throw the baby out with the bathwater"? Would any of these self-appointed and self-anointed "experts" abandon their God-given, constitutionally guaranteed freedoms for the type of life they seek to consign and restrict us to? Would anyone with a mind?
I know the fight is far from over. The face of prejudice is only the surface of that serpent's deep, abominable evil. The truth is truly the only weapon we really possess, and we must continue to tell it in one voice to any and all who will listen and hear. As for me, I'll no longer allow myself to be a "voiceless" victim of discrimination. The only real prisons are the ones in which we allow ourselves to be placed. Freedom is a right, not a gift or privilege. I will no longer be trampled upon or ignored. I am a person and a citizen, too! I demand my rights! Chief among these is freedom of speech, and I will not be silenced!
I believe things happen for a reason, and I have no objection to being a teacher or role model; in fact, I really love it. I would, however, also like some time and place in my life for relaxation and boys, fun and friends. I would like to enjoy my teenage years -- it's more than enough to have been deprived of my childhood.
To top this amazing odyssey off, I've just been through the most incredible 10 weeks of my life. I became quite ill in March when a family court judge said I had to either type independently or be tested, or I wouldn't be allowed to testify against my abuser. After 3 weeks of vomiting, excessive sleep, and almost complete shutdown, I made the agonizing decision to type independently with my dad next to me but his hands in front of him or in his lap. On 4/11, I met the judge in chambers and convinced him I could type, and am, indeed, the one who is communicating. He ruled I'd be allowed to testify during the first week in June with only he and my attorney allowed to ask questions personally. I soon met with my attorney to prepare for testimony.
On 4/25, I was thinking about the upcoming hearing and had an anxiety attack/seizure in school. I was checked out by my pediatrician and my neurologist and they said I was ok. On 5/3, I visited a school and met another girl who'd been abused, had passed testing, and had still not been accepted by the court. I made friends with her, watched her type, and I'm pretty sure I can help her learn to also type independently. She was pleased when I told her this.
On 5/1, my poem, "If I had a voice", which had been set to music, was performed at a concert entitled "Potential Unlimited" to a packed house at the 125-year old Bardavon Opera House in Poughkeepsie, New York, with a "meet-the-artists" reception afterwards. Meeting and listening to the other performers with disabilities, feeling the warmth of the audience's reception, and being on stage for the performance of my song and the ensuing applause was wonderful, as was meeting so many nice people and receiving so many nice compliments and meeting the other musicians and people behind the scenes backstage.
On 5/4, I did a presentation before 2 graduate classes at Hunter College and it went very well. When we got home, there was a message from my attorney that my abuser's attorney had worked out a deal with the county attorney. My attorney was on her way home to New York City from Rockland County, so I didn't get to talk to her until about 2 hours later. She sounded positive, yet nervous that the deal would somehow evaporate before we got to court.
On 5/11, I met with a psychiatrist named Dr. Saim Akin, an expert on autism who told me he has helped other non-verbal kids speak. He's an associate of my psychologist, Dr. David Friedman. We've met several times since then and our relationship thus far pleases and encourages me.
On 5/12, there was a family court hearing and my abuser consented to a finding of sexual abuse in the case against her. She had to agree to go to the mental health center for evaluation and treatment. She had to give up visitation and agree to stay away from me. She may only contact me via letter-writing and I certainly don't have to answer. At least that part of my long struggle is over. It's my impression that the mere threat of my testimony was enough to convince her and her attorney to just give up and not risk a trial. Amazing, huh?
On 5/16, I received a letter from the National Library of Poetry informing me that my poem, "Evening Stars", has been chosen as a semi- finalist in their contest and will be included in an anthology called The Edge of Twilight, to be published in the fall of this year.
On 5/17, I visited one of my old schools and decided that I never want to visit again. Too sad to be reminded of my painful past sometimes and of the pain of my peers with disabilities.
From Sunday through Tuesday, 5/22-24, however, I got a glimpse of my future at the 3rd annual Facilitated Communication Conference at Syracuse University. There were both old and new friends from everywhere, 2 newspaper interviews, and one T.V. news interview. There was a video on independence to which I had contributed being previewed on Sunday night, and more wonderful applause! Yet another beautiful performance of my song was given by Sarah Pirtle at the banquet on Monday night and still more wonderful applause! Last but not least was the workshop on planning my future on Tuesday morning with me, Marilyn Chadwick of Syracuse University, Mike McSheehan of the Citizenship Institute in New Hampshire, my dad, and my sister Amy as co-presenters. It was very interesting and gave me much food for thought. I had also met with my school consultant, Janet Duncan, before Tuesday's workshop, and we had an interesting conversation about my idea of combining high school with experiential learning and life experiences outside school for next year, including the fact that I might even audit a couple of college courses. Wow!
When I got home from Syracuse, even school seemed better and less boring. My psychiatrist friend, Dr. Len Leven, director of child and adolescent psychiatry at the Westchester Institute for Human Development of New York Medical College, came to visit, talk to me, and videotape me typing independently on 5/26 for his upcoming presentation at a conference of the A.A.M.R. (American Association for Mental Retardation). I felt it was fun and went very well. I also had a good, fun Memorial Day weekend, did my semester self-evaluation writing project for English, and I was feeling great!
Dr. Leven called on 6/4 with the great good news that his presentation about me had gone quite well and that many professional former skeptics are now willing to give F.C. a fighting chance. Dr. L. Was even able, because of me, to dissuade the A.A.M.R.'S Medicine Committee from adopting a resolution condemning F.C., and some well-known skeptics have asked for a copy of the tape.
I was elated by this news, but unfortunately, I had another seizure on 6/5, and spent 3 days in Westchester County Medical Center, and am now on tegretol therapy and feeling pretty fine. At my C.S.E. meeting on 6/8, I asked to be placed in high school for next year and that's where I'll be going - to Clarkstown South. They waived my final exams, saying I'd proven myself enough this year, and they didn't want to put me through any more undue stress.
As someone who has greatly benefitted from this admittedly controversial technique, I have been deeply appalled by the too often negative bias the press has shown regarding fc. While I want to compliment the "Syracuse Post-Standard" and their reporter, Robert L. Smith for the fairness and objectivity they displayed in their May 24, 1994 article about the facilitated communication conference; I strenuously object to being compared to "a show pony" in the 5/25 Syracuse Herald-Journal article regarding FC and me and to "Clever Hans", a trained trick horse, in their 6/13 article.
Would they or their reporter, Daniel Gonzalez, sit idly by and/or take kindly to such a comparison? Would theirs or any newspaper appreciate being compared to the tabloids or accused of "yellow journalism"? These are obviously rhetorical questions. I'm sure we all know the answers. What is not so obvious is why anyone would engage in the type of rhetoric that causes me to ask them. Clever Hans failed whatever testing he was subjected to. I have passed any and all tests I have been forced to take. I am not willing to be further publicly denigrated in any manner whatsoever, and would appreciate the apology I so richly deserve. I also ask that, in the future, they review and consider all of the information available about a person before engaging in thoughtless, hurtful innuendoes and pontification.
I guess this all sums up my rollercoaster life-of-late. I still look forward to a relaxing summer of chilling-out, growing, doing a keynote presentation at the Citizenship Institute in New Hampshire on August 12, and starting to write my life story. My future feels open! I hope to talk to you sometime soon. Take care and be well.
Your friend,
Sharisa Joy Kochmeister