I spoke with poet and Ollibean contributor, Amy Sequenzia , about the release of her book of poetry, “MY VOICE: Autism, Life and Dreams”.
Lauri Hunt: Amy, I love your poetry so much!
Amy Sequenzia: You are a great supporter. I am happy you like my poems. I was hoping they would inspire people.
Lauri: This is an incredible collection, I purchased two books, but have already given one away. I need to reorder more! Is this is your first publication?
Amy: This is my third chapbook. The other two, “My Words” and “My Words II” were more an exercise in writing. “My Voice” is a lot about self-advocacy.
Lauri: How long have you been writing?
Amy: I started typing a long time ago but soon after that I began having seizures. This, plus medication side effects, plus people ignoring my abilities silenced me for many years. I started getting serious about typing and poetry about 8 years ago.
Lauri: I think one thing that really speaks to people is that your voice is very powerful, it really forces people to confront any stereotypes they might have. I think that’s something that is greatly needed and people really want . Having been lucky enough to have spent some time with you, it’s wonderful to see this side of you. You have a very gentle presence, and I love seeing the passion and strong emotion that comes out in your poetry, especially in “My Voice, My Life”,” Blow”, “Self -Advocacy” and “Beyond Stereotypes”. Have you always been outspoken about disability rights?
Amy: It was hard for me to talk about my disabilities. I was mostly ashamed of being autistic because the teachers and doctors used to refer to me as “retarded”, “severe”, “difficult”. I wasn’t expected to learn things. Typing poetry made it easier for me to value myself and talk about my abilities and disabilities.
Lauri: Any advice for younger kids living with disability?
Amy: Young kids should be encouraged to be the best they can be. Parents should never give up finding the best approach for their kids. Everyone is different. Everyone is special. Don’t deny the disabilities, keep it real, fight for your rights, focus on what you can do, ask for help for the things you can’t. Disability should not be a reason for shame. Be proud of who you are and for the things you can do, even if those things are still inside your head.”
Lauri: Living with epilepsy is also a part of many of your poems. That is one thing that I don’t have any personal or familial experience with, yet I could feel the terror and anxiety that you must live with dealing with seizures in “The Giant” and “After the Storm”. How do you deal with this? How often do you experience seizures?
Amy: Epilepsy is one thing that should be cured. I have seizures almost every day. Sometimes I cannot think for several days without having a headache and I need many breaks during the day. The side effects of the medications make me tired and I look distant and uninterested.
Lauri: I also love the hopeful and insightful, “Respect” , “The Life of This Poet”, “Life of Learning”.. These spoke to our family, especially, Henry..I think so many that don’t live with disability see our ( and I include our whole family in this ) lives as so very different from theirs, feel that we have it so much harder, and kind of feel sorry for us. We don’t see it that way that way at all. In “A Life of Learning” you write, “Being me is hard sometimes, But it’s no different than being you, We dream and hope just the same, We learn from hardships, too” That’s perfect.
Amy: Feeling sorry for our disabilities means not accepting ourselves. I feel sorry because disabilities rights are still lacking, not because I am disabled. My message is, hopefully, about our strength and similarities. Maybe the neurotypical world will join us.
Lauri: Amy, one of the missions of Ollibean is to reach out to kids with disabilities that might feel isolated or are having a hard time going through school because they aren’t included or are even bullied because of their disability. Any advice for them?
Amy: Bullying is shameful, sad and even criminal. Kids need the adults to help and protect them. The kids who are not being included can speak up about what their disability means or have an adult speaking up for them. There are neurotypical kids who will understand that being different is not being “wrong”. Friendship is important even when a kid seems not to care (he does). Good friends can share a smile.
Lauri: There is a special thanks in your book to Doug Biklen, the Dean of the School of Education at Syracuse University. He is definitely one of my heroes…there’s a pretty long list from ICI.
His book, “Autism and the Myth of the Person Alone” includes contributions from Jamie Burke, Richard Attfield, Sue Rubin, Larry Bissonette, Alberto Frugone, Tito Rajarshi Makhopadhyayi and Lucy Blackman, is one of my favorite books of all time.
Including the perspectives of people living with autism through interviews with Dean Biklen or written by the individuals themselves makes it required reading for any parent raising a child with different abilities. It’s imperative we have the voices of those living with disability, with autism, cerebral palsy, whatever the disability as part of ANY discussion about disability. So thank you for joining these accomplished writers and artists and sharing your life with us.
Amy: Dean Biklen never gave up and made the FC method better, scientifically sound. It made it possible for us, non-speaking autistic, to speak up. “Nothing about us without us”.”
Lauri: Your poetry is so meaningful to so many. You write about things that so many feel and can relate to. I think people that don’t live with disability will learn so much from your book. My hopes are that people really listen to your words, take the time to see the beauty in us all, and break down those barriers of “us and them”.
Amy: You said it all. Thank you for being an ally.
Lauri: Wow, thanks, it’s easy, we love what you have to say. How can someone purchase a copy of your book?
Amy: Email me or send me a message on Facebook. (firstname.lastname@example.org or on FB @Amy Sequenzia. I loved being interviewed by you. Ollibean is a good idea to get kids involved in things that are important to their own lives.”
Lauri: Thank you so much Amy,that means a lot! I loved talking to you and hope to see you soon.