After posting last week’s interview with Amy I asked her if she was comfortable with me asking some follow-up questions inspired by her answers to my original questions. She, very generously, agreed. This is the new extended interview! Amy talks about her poetry, (including a poem about having a seizure) writing, being in an institution and how it feels to be ignored and thought incompetent by so many. This interview has also just been published on Huffington Post, click ‘here‘ to read it there and do “like” it, share it and tweet it. We need Amy’s voice to be heard to counter the massive amounts of misinformation out there. For all of you who wonder what you can do – share Amy’s voice. Get people to read what she’s saying.
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: How old were you when you began writing poems?
“I wrote some things soon after I learned how to type that my family thought were poetic. When I was about 16 I had a good teacher, and I wrote poetry with her. But then she left and for a while I did not have good facilitators.”
AZ: Is poetry your preferred way of expressing yourself?
“Sometimes it is easier to write in verse. That happens when I want to write but the subject is upsetting or if I am hurting. Sometimes I just feel inspired.”
AZ: What were your dreams for the future as a child?
“I had many. I was surrounded by ableism, although I did not realize that back then. I remember two things: I wanted people to know I was smart, and I wanted the other kids to play with me.”
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: From the day when you were 8, how many months or years did it take before you were able to type your thoughts and feelings, your opinions and able to converse, or was that immediate?
“It was immediate. But soon I began having seizures and for many years I made almost no progress. After that, finding good facilitators became harder. I can type with some people now, still hoping to be able to type with more.”
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? If yes, how so?
“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: You mention that you have other disabilities. What are they and how do they impact your life?
“I have cerebral palsy and epilepsy. I also have dyspraxia. Movement is hard for me. I am unbalanced and I tend to bump on things; I have many bruises. I cannot go down stairs safely by myself. My body takes a long time to respond and I fall easily.
My fine motor skills are basically non-existent and get spastic sometimes. I don’t feel parts of my body as I think other people do.
I can deal with all that. But epilepsy is the worst. I have seizures almost every day, without warning, at any time. It is not nice.”
AZ: Can you talk about what it is like having a seizure? Do you have any warning?
“I wrote a poem…
Seizures are like falling into
a sad and dark hole.
Rest is necessary and no sense
is strong enough
Yet the senses are very awake.
Beside me is my soul
so tortured by synapsis
Seizures are hopelessness
going deep into the zone
A giant man coming after me
like an entity of torture.”
Copyright 2005 by Amy Sequenzia
“It is scary, I feel like I am falling in a deep, dark hole. I only realize I had a seizure when I am back, after a while. I also have partial seizures that are like hallucinations. I don’t remember anything about those.”
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’s website (ICI Website click here) and question them yourself. Being skeptical is okay. That’s why Dean Biklen and the others at the institute do such a good job documenting everything.”
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: When were you in a school/institution and for how long?
“I was 6 and I asked to leave after I learned how to type, when I was 8 years old.”
AZ: Can you describe that experience?
“Painful, isolating, lonely.”
AZ: What are the most common misperceptions people seem to believe when they first meet you?
“That I am ‘not there,’ that I am not smart or that I cannot think by myself, that I am a child and that I deserve pity. None of these are true.”
AZ: If you could write a script for a stranger meeting you for the first time, what do you wish they would say?
“Not what they would say, but how they would approach me. With respect and interest. Not ignoring my disabilities or how I look and act — I am not ashamed of that — but wanting to know what I think, how I feel.”
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.”
Amy’s voice needs to be heard. Please help me inform the misinformed, educate those who are being given incorrect information by any number of well-meaning people not just in the field of Autism, but all fields of “Mental Health” as well as Education by sharing Amy’s words. Email this, share it on Facebook, tweet it. Amy has given interviews to others as well as written a great many pieces for other blogs. I am listing but a few of them below.
- Today’s Autism Hero: Amy Sequenzia (beyondautismawareness.wordpress.com)
- Ollibean (This is the site where Amy often writes. Click on the link I’ve provided and everything she’s written for them will come up. It’s also a wonderful resource in general)
- A Slice of Life With Amy Sequenzia (Thinking Person’s Guide To Autism)
- Non-Speaking, “Low-Functioning” (shiftjournal.com)
- Amy Sequenzia: It’s Not Hate (Autism Women’s Network)
Hi Amy, it’s Angie. I would be honored if you would take the time to answer a few questions for me!
1 – My daughter, Marisa, is completely non-verbal. She has a speech device, called an Alt Chat. However, she’ll only use it when she’s highly motiviated. Mostly to ask for a soda, or chocolate milk. Lol! 😉 Whenever she has a “request”, and I know what it is, I make her use the AC to ask for it. This has been going on since she’s had it. Do you have any advice for motivating her to use it independently?
2 – I’m also trying to teach her independent living skills – ie, brushing teeth, combing hair, bathing, etc. She has zero interest in doing any of these things herself, except for dressing. Again, would you have any advice for motivating her to try and do these things independently?
3 – I also wanted to ask about your partial seizures, and what symptoms might be displayed that make it apparent to others you’re having one? Marisa has instances where she, for lack of a better term, just gets “out of it”. She often will stop what she’s doing, stare into space, and blink repeatedly. She is having an MRI done in a few weeks and I plan on mentioning it to them, but does this sound anything like what happens to you?
4 – Risa has been having some aggression issues at school. It is usually limited to the times when she’s supposed to be doing her work, and doesn’t want too. I know she’s voicing her frustrations the only way she knows how. Are there any devices you think might help so that she doesn’t hurt anyone? Like a squeeze ball, instead of pinching? We are currently planning on trying to let her use headphones during work time, to distract from sensory issues in the classroom.
5 – Lastly, do you have anything that you simply think it’s important that I know? That you wish your parents had known? I have so many more questions for you, Amy, these are just the few that are on my mind the most right now.
Thank you so much for taking the time to read this. I truly appreciate any advice you could give me. I am still catching up on all your writings, but your words of wisdom speak volumes. Thank you so much for putting yourself out there. It means the world to those who can’t speak for themselves!
Such a great inspirational interview. Thanks to Amy and thanks to you:)
Sweet poet! Your words reverberate within in me.
Thank you Amy and Ariane for sharing your thoughts…beautiful interview.
Do you want to email me so I can send you the answers?
Hi Amy, I’m going to send Angie your email right now and will cc you on that email.
Thank you both, am off right away to read it & will reply again later!
Wonderful interview! Thank you Amy! Angie….you asked wonderful questions so if you would like to share Amy’s answers with me, my email is firstname.lastname@example.org. I would love to see them too! :O)