Amy Sequenzia, a non-speaking Autistic self-advocate, poet and writer agreed to an interview with me. Amy is someone whose work I have been following since I met her, this past spring. Her powerful book of poems, My Voice: Autism, Life and Dreams can be purchased by contacting Amy ‘here‘. Amy’s writing and poems are regularly featured on Ollibean.
AZ: Hi Amy. Thank you so much for agreeing to this interview. You describe yourself as a self-advocate. Can you tell us how that came to be?
“I think it was in PA when I had my first real contact with a group of autistics who where typing to communicate (The Lonesome Doves). That was in 2003 and I realized I could be speaking up for my rights to more people. After that I began writing poems that were a little bit about my life. Then I decided to write to, and meet with, legislators; was encouraged to write to newspapers and later for blogs.”
AZ: You’ve described how people have spoken about you when you were present, as though you couldn’t hear them or understand them. Can you talk about what that feels like?
“It feels like you don’t count as a whole person. It is rude and frustrating because I can’t respond or will not walk away. It makes me sad when people who love me do it anyway. Some people even continue to do this after being reminded that I can hear, type and think.”
AZ: Do you have memories of that happening when you were younger, before you could communicate through typing?
“Yes and I would get angry, frustrated, sad. Sometimes I would cry, sometimes I had a meltdown.
Sadly, it still happens.”
AZ: Were there things you did, sounds you made, actions you took when this happened?
“I answered in the question before, but I have to add this: I don’t have meltdowns anymore. But I need to have my support person with me to make sure I can express myself, if I want to. Some people still don’t get it.”
AZ: How did you learn to communicate through typing?
“It was a long and emotionally draining session with someone from the Institute on Communication and Inclusion (I think it was called FC Institute back then). I was 8.”
AZ: There’s been a great deal of negative notions and even so called “studies” done regarding facilitated communication. Can you address this idea that FC is not an accurate or meaningful way of communicating?
“It is how I communicate, it means it is how I can have my voice heard.
FC is a process, with clear steps and a final goal – independence. It is not easy and many factors play a part in the process.
As far as I know, from all the people who say FC is a hoax, none of them has ever interviewed a user who became independent, or has acknowledged the many studies, including double-blind studies done by different facilitators with different users. All this is documented.”
AZ: For those people who have only read the negative views on FC, is there anything that might make them understand what you experience when you try to communicate without FC?
“I am misunderstood. My face does not always show how I feel and I have other disabilities that prevent me from being more pro-active. My body can be stubborn. Without FC I don’t really participate in the world.
But it is important to know that sometimes I choose not to type and other times I might be too overwhelmed or tired to type.”
AZ: Have you ever had a bad facilitator?
“Yes. When I was in school, sometimes people would try to facilitate with me without any information about the method. Some would guide my hand; others would not offer resistance or the right support. I could not type like this.”
AZ: How did you cope with that?
“Sadly, I did not do anything. There was no encouragement from some and with others it was as if I was a piece of entertainment. I felt disrespected. FC is a lot of serious work. I had to wait until I met someone who believed in me and was committed to follow the best practices.”
AZ: How long did it take you to learn to type?
“I took only the first session for me to find out that I could type. Typing is also a matter of practice and trust. Today I am more confident and I can type fairly well with trained facilitators after a few minutes. If I know they will follow the best practices and nothing else interferes (like a seizure or spasms), I type really well, even if I don’t know the facilitator well.”
AZ: Is there anything you’d recommend to parents of nonverbal children who are hoping their child might communicate through typing and/or FC?
“Give your child every possible chance to communicate. Don’t believe in every article or every “expert” who says FC does not work. Go to the Institute on Communication and Inclusion (ICI) and question them yourself. Being skeptical is ok. That’s why dean Biklen and the others at the Institute do such a good job documenting everything.” (Click for the link to the ICI website)
AZ: My daughter Emma is just learning to read, write, and type. She is extremely resistant however. I’ve been told this is often the case. Were you resistant to communicating in the beginning?
“No. I wanted to leave the school/institution where I was living, so I had to make it clear. But it can be scary to have all the power to say things that can change everything.
I don’t know Emma. Maybe she just needs some time.”
AZ: Do you remember what it was like in the beginning for you? Were there things that could have helped you more that what was done?
“I wanted to type. I could choose food, clothes, anything. Then I began typing my thoughts. Maybe Emma is not interested yet. It has to be her choice, at her own time.”
AZ: What is your living situation like now?
“I live with friends. It is their house, but it is our home. We call it life sharing. I have state funding which is not good, especially in Florida. But because my friends respect me, I can have a life I can be proud of, and happy with.”
AZ: Did/do you have a mentor? If yes, can you talk about that experience and relationship?
“My mentors are people who show me the many possibilities of my life. They don’t always know that.”
AZ: I know several people consider you extremely important in their own process of learning to communicate and in their life. They think of you as a mentor. How has mentoring others changed you/helped you?
“I hope it has helped them. I still need mentoring. It is a good exchange of ideas, experiences, encouragement and support. It feels good to be considered important in someone else’s growth. It is lovely.”
“Thanks Ariane. This was a good interview. And thank you for being supportive of autistic voices.”
Thank you so much Amy for being willing to answer all my questions. Please help me thank Amy, everyone!