Amy Sequenzia: Respect How I Choose to Speak

I type my words because I am non-speaking. One of my disabilities, or one characteristic of my disability, is that my body does not move like my brain wants.

That of course, includes my arm. And I use my arm, my hand and my fingers to communicate. I also need the support of someone to help me coordinate and synchronize my brain and my finger.

I need to define support. It is the physical support of helping me type slower than my brain works, being able, at the same time, to feel my movement, knowing when to let go, when to remind me to slow down, when to remind me that it is ok to take breaks, as much as it is important to finish a thought.

Support also means to approach me with kindness and understanding, without pre-judgments and, very important, presuming my competence.

For me, as a Facilitated Communication (FC) user, the best support comes from people who know me well, who know what the method is about – people I know I can trust.
I can also feel comfortable with people I don’t know very well but who are experienced facilitators.

All this can be influenced by things I cannot control, like seizure activity and my level of anxiety at any particular moment.

For each FC user the experience is different. Some need more support, some need less, some are able to become independent. Each FC user has his/her own reasons for the support needed. And each FC user is going to progress at a very personal pace.

One thing that we all have in common is a desire to make ourselves heard. We found a way to communicate and we want to be heard. We also practice the method the way we are supposed to; we follow the rules and so do our facilitators; we try to improve with each letter we type.

None of this seems to matter much sometimes. Because we don’t speak, or when we do it is usually by reading what we type, we are seen as not intelligent enough.

If we go to a school interview, a speech therapist or any other place where we will be evaluated, the questions are not age appropriate, we cannot state what our interests are and we are soon labeled “low-functioning” or even “retarded”.

For example: when I saw a speech therapist during a process to get a better communication device, she kept showing me pictures and asked me to point to “apple” and “dog”. I was 25 years old! When I reached out to my support person and indicated that I wanted to type, the therapist said I had to work with pictures first. I typed anyway and said I was an adult. The therapist said I wasn’t typing, my facilitator was.

Facilitated Communication is a process and there are ways to validate the user. The skeptical attitude of people with pre-conceptions about the method and about us is frustrating and demeaning, since we work hard to let our voices show who we are, what we think.

And because all skeptics refuse to actually interview us or try to understand the method, we are soon dismissed as not capable.

The validation tests are a goal. But when every time someone approaches us is with the intention to “prove that we are a fraud”, our anxiety level gets so high that it is impossible to be focused and enough at ease to show our best.

By following the method, we also learn how to protest if someone is giving us more support than we need and helping us type instead of helping us be ready and prepared for the work involved in our process of typing.

That is my experience and I believe most FC users have similar experiences.

The ideal approach for anyone evaluating our needs is simply trying to understand and getting to know us, let us be ourselves and let us show what we know, how much we know. We are not perfect, we are not geniuses, we still have a lot to learn and a lot of work to do with our typing.

But we deserve respect and the recognition that we are doing our best. So do our facilitators. We deserve unbiased evaluation from people without an agenda of “debunking” our efforts. Facilitated Communication is how we choose to communicate and this is our right.

About the Author:

Amy Sequenzia is a non-speaking Autistic, multiply disabled activist and writer. Amy writes about disability rights, civil rights and human rights. She also writes poetry.
Amy has presented in several conferences in the US and abroad, and her work is featured in books about being Autistic and Disabled. Amy is deeply involved with the Neurodiversity Movement and has been outspoken about the rights and worthy of disabled people.
Amy serves on the Board of Directors of the Autistic Self Advocacy Network (ASAN), and the Florida Alliance for Assistive Services and Technology (FAAST). http://nonspeakingautisticspeaking.blogspot.com and Autism Women’s Network. You can also follow Amy on Twitter at @AmySequenzia.

One Comment

  1. claudiablue June 29, 2012 at 5:08 pm - Reply

    Word!

Leave A Comment