Celebrating My Life

Photograph hot air balloon in the sky . Text reads " I celebrate being non-speaking because it is THE only me I know, and because I can still “say”  what I want to say, and fight for my rights, without oral speech." Amy Sequenzia on Ollibean

I am writing this prompted by something John Elder Robison (I will refer to him by

his initials, JER) wrote about Autism Awareness/Acceptance Month, in particular

this quote:

“We may have gifts too, but disability remains the basis for diagnosis. Some

autistic people are rendered non-speaking by their condition, and I can’t imagine

who would celebrate that. Others live with significant medical complications like

epilepsy. I’ve yet to meet anyone who celebrates that either.”

I commented that JER does not have to “imagine”. I am here, I celebrate being

non-speaking, I celebrate my epileptic life (which is different from celebrating a

seizure).

I celebrate my Autistic, Disabled life.

It seems illogical, but it is not, and I will explain why.

It is about assumptions, based on what is considered “normal”, how we are

supposed to feel about things considered “difficult to live with”.

I am not able to speak, and I don’t want to speak.

I celebrate being non-speaking.

I celebrate being a good listener, when most speaking people interrupt each

other, not always listening – really listening – to what the conversation partner has

to say.

I celebrate being an activist for the right of every single person to be heard, no

matter which method they use to communicate.

I love my speaking friends, including my best friend, but sometimes they

are exhausting, with all the talk. I still celebrate their lives, noise and all, as I

celebrate my quiet-but-listening (not silent, I am loud in my own way) life.

I do love you, speaking friends! I am not tired of you.

JER chose his words poorly, maybe he meant that he can’t imagine people

celebrating being non-speaking because it is harder for us to be understood.

It is hard to have most of the world ignoring us, not allowing us time to

communicate what we want to convey. This is not because we are non-speaking,

it is because most people in the speaking majority are ableist, and because

“normalization” leads the list of false assumptions about how we feel, being non-
speaking.

I do not celebrate that majority or their assumptions about being non-speaking.

I celebrate myself, my life, and everything about me.

I do celebrate being non-speaking because I believe I am a better me when I am

really listening and learning.

I celebrate being non-speaking because it is the only me I know, and because I

can still “say” what I want to say, and fight for my rights, without oral speech.

I think that JER does celebrate us too, since he is sharing a book I edit with

Elizabeth “Ibby” Grace, an anthology with essays written by people who are non-
speaking all the time, or non-speaking some of the time
.

The book is pretty celebratory!

Now, about epilepsy. How can one celebrate being epileptic (remember, not the

same thing as celebrating a seizure)?

First, JER’s premise is faulty. Epilepsy and autism are two completely different

things.

Let me say this again:

Epilepsy and autism are two completely different things.

I cannot be myself and be non-autistic

I can still be my Autistic self without epilepsy.

That should suffice.

I will go further though.

Do I celebrate having seizures? No. Having a seizure sucks, hurts, it can kill.

But they are part of my life, as are so many other disabilities I have, that are not

autism either. I try to minimize the effects of the seizures, the number of seizures

I have (almost every day) but:

I will not stop celebrating being me.

I have epilepsy. When I am not having a seizure, I am still epileptic.

As soon as the seizure ends, I can celebrate every single moment of my life

again. And celebrate it even more, having gone through it and back.

A story to illustrate:

Recently, I had the worst seizure in 7 or 8 years. I could not type for two days. I

could barely point to “y” for “yes”, and “n” for “no”.

This happened during the night, before a morning presentation I was to give.

I could have cancelled the presentation. I didn’t. I always prepare in advance

what I want to say and the computer “speaks” what I typed. I decided to present,

even though keeping my head up was almost impossible. I delivered my

message, the one sad thing was that I couldn’t interact with the attendees and

answer questions.

Still, there was reason to celebrate:

The ones who were there celebrated me.

I celebrated myself, epilepsy included.

I celebrated that I was able to push myself to be present and let people see who I

am, epilepsy (post seizure) included.

I celebrated being Autistic and disabled, with everything that comes with my

disabilities, epilepsy included.

Even though autism and epilepsy are two separate things, they are part of me

and I cannot celebrate my life with one, and not another.

I will not wait for my seizures to disappear to celebrate every single moment of

my life.

One third point: Living with significant medical complications is part of living. Not

only Autistics have co-occurring medical conditions. If everyone is going to stop

celebrating life because of medical conditions, the world will be a very sad and

boring place

I celebrate my life, always.

“That’s the thing about livin’

When you get here, you take what you’re given”

(Three Angels – HEADSTONES)

TYPED WORDS ,LOUD VOICES

Image description black and white photograph of woman with short dark brown hair. She is smiling. Dark grey text reads:Amy Sequenzia Passionate Autistic activist, writer, and poet . Read more from Amy on Ollibean and visit nonspeakingautisticspeaking.blogspot.com .

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.

10 Comments

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