I am Sue Rubin

Facilitated communication:The Sue Rubin Story

Sue Rubin and Rita Rubin, conversing

Visual:
Facilitated Communication

Rita Rubin, while Sue types:
I am Sue Rubin.

Visual:
I AM SUE RUBIN

Rita Rubin, while Sue types:
I am a student at Whittier College.

Rita Rubin
Sue’s mother:
I thought that I knew who Sue was and that we loved her for who she was, but, um, we of course, we had absolutely no idea what, that she was an intelligent person. When you would talk to her it was really like talking to a wall. I mean, she had really poor receptive language. Then she started typing when she was thirteen, and what she told us then was that when we used to talk to her, she heard the words as sounds going over her brain, that nothing stopped and sank in. And it wasn’t until she started typing and having language herself that she began to, uh, hear these sounds as words and able to put meaning to them.

Rita Rubin:
It was so overwhelming that I would find that I would be driving and I would stop at a red light and I would start crying. And I don’t, and I wasn’t crying, I thought, ‘Rita, you’re nuts. I mean you’re not, you shouldn’t be sad about this. You should be happy,’ like and I was happy but it was just so, so much emotion that I couldn’t keep it in myself. I knew that we had to think really differently about what her educational goals and objectives should be. O.K., she types. She’s going to college. I mean that was it.

Bob Rubin
Sue’s father:
And of course the other difference is that now she became an active member of the family. Instead of us making decisions for her, she was now someone who could make decisions, become a full participant in the family.

Anne Donnellan, Ph.D.
Professor at the University
of San Diego and Emeritas at
the University of Wisconsin:
Whatever may be true about Sue’s particular experience, she went from a thirteen-year-old who was barely learning to put items together to somebody who got fabulous grades on the SAT, and her math scores in particular were amazing. Now I think that’s a good example of context, because her father is a mathematician and her brother is a physicist. And maybe at my house it wouldn’t have been quite so successful. But you know, that’s an enormous change in and of itself.

Rebecca Garcia
Special Education teacher at
La Colima School in the East
Whittier City School District:
The students that I get that have autism that have some motor planning issues, uh, we started right away to see if they’re able to, uh, facilitate and with, through facilitation they’re able to communicate, do academics, and actually guide their program to some degree.

Bob Rubin:
There was really, there are really two aspects of Facilitated Communication and the controversy is more focused on people saying, ‘Could or does facilitator influence occur?’ And the answer is, ‘Yes, everyone who is in the FC world knows that it can do,’ and in fact what Rita and other people involved in the FC Institute are there is to get best practices, proper training to minimize the likelihood of facilitator influence; can’t eliminate it completely. But these papers, all these negative ones, have tried to show that facilitator influence can occur. They have not even addressed the question whether communication can occur. It’s not even the question they’ve been asked. The other studies that do ask if, if communication can occur in fact have discovered that it can occur.

Dr. Anne Donnellan:
She was typing things that happened at school, and, you know, things that we had no idea, and so I knew that it wasn’t us. I knew that it was her. I remember I was sitting across from, in a restaurant, across from Rita and Sue, and Sue was thirteen at the time. And the waitress came along, and she gave Sue some little kid drawing stuff, you know, and so her mom was very busy trying to cover this up and say, ‘Oh, well, she doesn’t know whatever.’ She typed out, ‘Face it, Mom, she thinks I’m a retard.’ And I thought, ‘That’s so teenager!’ (laughing)

Rebecca Garcia:
It is their personality. You can’t claim those things in a person. Their personality comes through, and their words.

Dr. Anne Donnellan:
Uh, over the last couple of years, a number of people that we know and know well have begun to speak and to speak with fluency. They start saying the letter before they type it and then are able to read what they’ve written themselves. And, um, we’re not talking about young children here. We’re talking about people as late as in their fifties. And, um, you talk about opening people’s eyes. I mean, there’re still those who will say, ‘Well, maybe they weren’t really autistic,’ and they had nothing to say for fifty years, and so suddenly they decided to say it! I mean, there are all kinds of absurd explanations, but I think it has tremendous importance for us as, as a science, as a field to, uh, begin to look at what this might mean for the development of language, for the acquisition of language, for the ability to become fluent in your language. FC might be one way that helps people initiate, organize, regulate a great many things about their bodies and about their behavior.

Marissa Mendibles
Sue Rubin’s Aide:
I just started, um, five months, five to six months ago working with Sue, and it’s been a, a great experience. She’s taught me so much in facilitation. She is not afraid to express anything or how she feels, and she’s always opening to answering questions and stuff like that. She’s really great.

Rita Rubin:
Sue interviews the people who are first vetted by the Human Resources person. Sue interviews them. Sue hires the people or tells Waffata ? that she wants to hire that person. And then also if Sue wants to fire that person, she just has to tell her supervisor, so Waffata has been very good about giving Sue control over her staff people. Sue, Sue, focus.

Marsha Kinder:
Well, maybe you could share that with us, I mean, Sue, about your, your use of FC, what it meant to you.

Sue Rubin:
Yeah, huh.

Marissa Mendibles:
Go ahead. Focus.

Sue Rubin:
No.

Rita Rubin, while Sue types:
It gave me a life. It gave me a life.

Rita Rubin:
It gave me a life. If she hadn’t, if she hadn’t started typing, I just can’t imagine, um, I can’t imagine what she would have been like and, um, because I see people who, um, don’t have that opportunity, and um, I’m just really grateful, grateful for the school assist really that brought it to us.