Bigots

by Amy Sequenzia

This post is about Facilitated Communication (FC). I can already hear the detractors going on and on about the lack of “scientific validation” of the method.

First, that’s not how science works. That’s not how human beings live, scoring 100% in everything, all the time.

Second, the detractors are bigots, and also arrogant.

I will give one example, among many others that happen to me – and others – all the time.

I have been using FC for a long time. I can also type using RPM (Rapid Prompt Method) – although I am not very good at it – but I prefer FC. Sometimes I don’t need any support to type a few words, or maybe a sentence, sometimes I need more support than just a light touch on my elbow.

I don’t know exactly why it is so hard for me to type independently all the time. I do know that when I do, I need to use much more energy to make my arm raise to a proper typing position, to stay there for the duration of what I want to type, and for my brain to slow down and be patient. When I have things to say, I see the words in my head, then I type them on the screen.

My arms hurt, my brain rushes, I end up exhausted.

Sometimes the CP symptoms take over. My arm gets stiff and heavy, and uncontrollable.

That’s me, my experience. People are different.

Recently I was contacted by someone who, I assume, has read my articles. She said she was looking forward to meeting me. We met during a conference but we didn’t talk.

I had had a sleepless night, followed by an early morning seizure. This is not uncommon and it has happened before, more than just a few times. Since I always prepare my presentations in a way that the computer just “speaks” what I typed, I decided that I would keep my self-imposed obligation to show up and present.

In a “solo” presentation, as the computer delivers my words, I pause a few times to answer questions and interact with the people present. In this conference, I was asked to respond to some questions in advance, maybe because of time constraints and for the translator to get used to the words. There were lots of non English-speaking people.

My friend read my answers because the attendees were having a hard time understanding the computer voice. The person conducting the panel stayed on script and didn’t ask me any “new” questions.

I had my iPad ready in case I wanted to type.

I looked tired and not very well.

I wanted to be there, being the disabled, tired, not good looking me.

By the second week after the conference, the same Autistic woman who had contacted me – in one instance joined by one other Autistic man who also shared the panel with me – had contacted two of my friends, expressing “concern” that my words weren’t mine.

This is when I call her a bigot.

She “admired” my words before she saw me. I don’t know if she knew I use FC but this is not a secret.

As soon as she saw me, very disabled, needing a lot of help, she assumed I was not a thinking person.

Without knowing me, she assumed I did not have a choice to be there, or a choice to skip the presentation.

Without approaching me, or trying to get to know me, she assumed my facial expression and my body language meant that I was being forced to be there.

She wanted to see me perform, behave, and look like her expectation of me. Or she wanted me to not be present because of her wrong assumption that I did not choose to be there.

She wanted me to comply with her idea of me: too disabled for coherent thoughts, too unattractive and kind of slouchy for her comfort, and of course, a FC user, therefore “a fraud”.

Remember, she never talked to me, she did not see me typing, other than a few words. She concluded I cannot be the author of what I type because of how I look.

She does not know my history, or anything about my facilitator.

She does not know about my training and my process.

She concluded I am to be pitied and “protected” and that my facilitator is certainly unethical. She probably thinks all facilitators are.

Bigots expect us to type what they want, when they want, in the way they want. Bigots want us to look and act in a way that makes them comfortable in our presence.

Bigots want us to validate their ableism and bigotry: to them, too disabled for self-care means unable to think and type.

Bigots don’t want to know us. They believe that the way they perceive us is who we are.

I don’t type on other people’s schedule.

I don’t perform for ableist people who feel that I need their “protection”.

I am not ashamed of how I look even if I look very tired and sick.

I have Cerebral Palsy that can make my body totally uncooperative in every way.

I am epileptic and my daily seizures can be very debilitating.

I am Autistic and my facial expressions and body language are atypical.

Most important though: I am a human being who is lucky enough to have found a way to make the rest of the world understand what I have to say, through typing, through FC.

I have self-determination and I decide everything concerning my life.

Bigots’ feelings, concerns and assumptions will not interfere with how I lead my life.

And no, bigots don’t have the right to demand “proof” of my competence, especially when they are dismissing my humanity by talking about me, without me.