Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.
are the people in each other’s neighborhoods, and the more we know
about each other — the more visible autistic people and children are —
the more common autism acceptance will be. That is our hope.
Today we’re talking with Amy Sequenzia, a self-advocate who types her thoughts.
What is your name?
Amy Sequenzia (my full name is Amy-Christine Sequenzia).
Do you have a website?
No. I will have my own blog soon. Meanwhile I have been blogging for Ollibean.
What would you like a one-sentence description of yourself to say?
Autistic self-advocate and poet. A friend called me charming, strong, funny and inclusive. I like this definition too!
Do you have any autistic superpowers? What are they?
I don’t think I have superpowers but I think some of my poems can be powerful.
I taught myself how to read. Is this an autistic superpower?
What are some situations that make you happy, or satisfied?
- When I am respected.
- When people recognize that I have to work hard on what I write and when they appreciate that.
- Being with non-judgmental people where I can be myself and not worry about what people will think.
- When I can be “silly,” being myself, without being judged.
What are some situations that make you sad, or anxious?
- When people address my support person while talking about me, when I am standing right there.
- The murders of autistic and disabled people made me very anxious.
- The times I am put on the spotlight by people who only want to emphasize how much help I need and dismiss what I write as unrealistic and not useful (for example: when I say that labels like “low functioning” are not helpful to our self esteem and the “experts” insist that I am “low functioning” and should just accept it).
- I am always worried that I will lose my state funding. I can only make the choices I make for my life because I live with people who respect me. Without the funding there would be many overwhelming changes and I would lose some of the support.
- “Speaking up” using my communication device, and having people questioning my abilities because I use Facilitated Communication. They judge me without knowing my path or how hard it is to type sometimes.
Are there specific topics you find particularly compelling?
- Women’s issues. I like what Nick Kristof (NY Times columnist) writes.
- Human rights, civil rights, autism rights.
What are your preferred ways to be social?
- I am pretty social with people I know well. After a while, if the place gets loud, I need to take a break.
- With people I don’t know very well, I am better one on one.
- I like being social on Facebook because I am social on my own time
- I love being with my family and my best friend.
What traits do you prize in a friend, or companion?
They must be respectful. Patience helps because I do things slowly. I need a lot of help with everything, so a friend needs to be understanding and realize that what I cannot do is not a choice. It is just who I am.
Are there parts of your life you wish were easier?
I wish I didn’t have epilepsy.
It would be better if I didn’t have to ask to be respected. I wish respect for all human beings were contagious.
What’s the next big goal you have for yourself?
- Start a blog.
- Make sure I am heard on the board of directors at FAAST (Florida Alliance for Assistive Services and Technology).
- Improve my typing skills. I am working hard on becoming more independent.
- Keep self-advocating, and advocating for others, despite the skeptical looks and demeaning comments I am sure I will hear.
- Become a better writer.
What does bliss feel like to you?
- Good food!
- The feeling of the wind on my face.
- Talking about myself and my life is hard but it feels like bliss when people understand me and start changing their attitudes — towards autistics who are or appear to be more disabled — by treating us with respect and not ignoring what we have to say.