Sue Rubin

Closing Keynote 3^rd Annual Summer Leadership Institute July 21,2001

Student Panel “In Our Words – Whose Life Is It Anyway?”

Good afternoon. We will be talking about self -advocacy in this closing session, and I will present my thoughts using facilitated communication. When I was a child, quite autistic, and not aware of my surroundings, I basically used behavior as a method of self -advocating for myself. I could make people understand what I wanted and didn’t want. Although really important decisions were made for me, I did make small decisions, like what I would wear or eat. Today I make all the decisions in my life. I decided to attend Whittier College; I decide what classes I will take; I decide when I will go to the “Y” and when I will watch a movie. I decide who my staff will be and whether I want a roommate; I make every decision that you regular people do everyday. I am able to do this because I use facilitated communication. Quite a few of you are probably thinking that FC disappeared years ago, but the school district in Whittier and the adult programs in Whittier have been using it for the last ten years. There are about 300 people who make decisions and do academics using FC in the Whittier area. Many of us are typing without physical support and others have validated their typing in natural environments.

We people in Whittier are not exceptional. We are just like your students and children who are now using behavior or pictures to communicate. It would be a terrible mistake to assume people will not be able to type because they are retarded. I scored 24 on an I.Q. test when I was 13, the year I began to type. All the people I know who are typing successfully were thought to be retarded before they started typing. I think we non-verbal people are quite bright if you normal people can figure out how to get beyond our handicapping condition. By believing we are retarded, you think we have a limited need to communicate, because we only need to communicate basic needs and desires. Pictures are fine for this, which is why PECS is so popular today among speech therapists. When I tell you we are intelligent and need a communication system that allows us to use as much language as you do, you want to turn me off and attack my method of communication.

When I make decisions my staff respects what I have decided because they know I am an intelligent and competent person. All of my staff have been trained in FC so I can communicate whenever I want to. In fact, all staff at WAPADH have been trained in FC so they can communicate with the non-verbal consumers.

Quite a few agencies used FC in the past, but stopped because they were afraid people would make allegations about abuse. We, as a group of non-verbal people, are perfect targets for abuse and should have the right to report it. Any agency that uses FC should have a policy to handle allegations. There must be a naïve facilitator brought in so the person can repeat the allegation. It would then be up to the police to investigate just as they would investigate an allegation by a speaking person. The only study ever done on this subject, was done by Anne Botash and others in New York (Archives of Pediatric Medicine, 148, 1282-1287). They found that the incidence of unsubstantiated allegations was not higher using FC than speaking. Quite a few agencies started using FC without properly training their staff and abuses of FC occurred. The awful staff were influencing the typers. We in Whittier are quite aware of that possibility and teach both facilitators and typers how to minimize or avoid influence. Having to validate everything you type is ridiculous. We cannot stop communicating because there is a chance that one of our communications might be influenced. We create thoughts all day and must be able to communicate them to everyone around us.

Whose life is this? It is the life of the person making decisions and if that person is not the same person who is living the life, then something is very, very wrong.