Terminal Fates

Filed Under (Activism, Advocacy, Discrimination, Politics) by Estee on 29-11-2010

“You can’t say your child is great,” I was told when looking into services for Adam. As part of our growing process, we have to know what is available to us. I was discussing how Adam has many challenges and is also:

-affable
-affectionate
-likes to be social but has difficulty at times…

“He sounds great,” interrupted the woman I was speaking to on the telephone who had asked me what Adam was like. “Just so you know, I have a child with Down’s syndrome. It’s a drag to have to paint the worst scenario, but in order to get services, you just have to.”

Why subjugate our wonderful children, young and old, to terminal fates? You remember — the ones “worse than cancer.” Why must we have to paint a dimsal picture, or view people with disabilities as something horrible and devastating to us and society? This is the very reason why we’ve had such misrepresentation that hurts autistic people, and why parents are literally forced to represent ourselves as desperate, our children as hopeless without certain types of services. People with challenges have a right to support. At the same time, we have a right to love and cherish our children and believe in them. We have a right to think our children our terrific, great, a joy, even. It’s not sugar coating anything (back in the day, I was accused of this). My child needs lots of support. I do not wish to embellish anything. I simply want to tell people what he needs as his inherent right. As it is, the services and supports for autistic people here in Ontario are neither diverse nor robust.

If there is a thing called fate, I think it’s terminal for all of us, isn’t it? I sure wouldn’t call autism a fate worse than cancer and to be honest, I find it really hard to speak about my son in a way that I find demeaning to him. There are facts, and there are exaggerations. We all want to make the best of the lives we have, and so we should — with the support we need, and the love in our hearts that we just need to express.

Push

Filed Under (Poetry) by Estee on 22-11-2010

A little something I’m working on:

Push

By: Estée Klar

I pushed you into the world.
I wanted you.
I’m sorry.

The white hospital room and metal equipment
fluorescent lights and beeps
no air
until your lungs were suctioned
over one minute.

I waited
anxiously,
afraid I would never meet you.
But you cried
as nature intended,
as medicine assisted.
I’m sorry.
I’m glad.

You are eight now.
Goodbye my toddler –
the one I weep over.
Time barged in.
My toddler
proclaimed autistic
at 18 months.
The number of life.
Chai.

When the life as you now know it began
behind closed doors with strangers –
enthused young therapists –
to heal the world
in tight jeans
and you, their mission.

Your life started for me when you kicked.
I watched your foot underneath my skin,
when you held your head up for the first time,
from the crook of my arm,
as you sucked the nutrients you needed
from my full body
releasing love.

Your eight-year-old head
still soft
I put my face in your hair,
and hold you for fun,
in the crook of my arm
(sometimes you smile).
But I think
that you can’t remember.
Your writhing body pushes
to climb
the growth chart,
we marked last year –
and away.

Since I pushed
the way I always do
through life
to life
to you,
I say daily goodbyes.
Ah, your little hand in mine.

“Bye-bye, yes,” you say anxiously.
Difficult words for you to speak
You try so hard.

When the people came —
as they do in our autistic life —
the ones who needed to close the doors
like heavy iron gates
I heard you wailing.
My bosoms leaked
my arms yearned
my heart
ached.
I should have done something to protect you.
I tried so hard.

Preschool.
Leaving you in the schoolyard
you circled perimeters
maybe watching,
for comfort,
I waited.
“It’s time for you to say goodbye,”
the teacher said.
I wasn’t sure
if you were happy,
if I should have yanked you home.

You tried so hard —
with loud children
a crowded room
you found quiet corners
books
and alphabet letters
that you wiggled in front of your eyes
a dance from A to Z —
your solace.

You are my boy —
the one who read book spines
from the shelf you laid beside
before you could walk.

You were pulled away,
told to sit down,
taught to use picture symbols,
to kiss the baby doll.
That would satisfy them —
plastic affection,
obedience
and oh,
to communicate.

Kindergarten —
a quieter place
little shoes lined up in the hall.
You learned your routine,
to cleanup,
put in your chair,
sit with kids.
Those kids —
fast talking, moving, sharing tea cups, Lego, dolls
like the blur of the ceiling fan.
They didn’t come over.
I ached for you,
for me
they didn’t see.
The fan above
kept you company
and you waved hello.

You made things
you showed me your love of animals and dinosaurs
you made drawings with details
that your peers couldn’t draw.
Their voices were louder,
their hands stronger,
thicker lines on paper —
typical lines.
So people praised them
while you circled the room
trying not to be seen.

You see things
you know things
you can’t say things
very often.
Wordless
yet full of hums, clicks and whoops,
you uttered many
like jazz
I seemed to understand.

Your words come sometimes
you push out,
the assumptions
about a humming boy.
I have to pay attention
or the soft words uttered,
cannot be retrieved
from vanishing speech bubbles
above superheroes
poof.

The sounds you made when dad and I split —
your body spasming relentlessly —
I feared.
Probes placed on your body, your head,
that precious cranium
from inside my flesh to the crook of my arm
they prepped and monitored
for seizures.

Your body
protesting change
in the brittle cold of February
thrashing and falling
with pain,
confusion –
I’m so sorry.

We calmed into
the sun of summer
warming us into fall.
We grew
from under
dead leaves
to fertile soil.
Ripe green shoots
of Hostas unfolded.

You have started a new school.
You leave every morning,
your soft lips kissing mine
my face brushing cherub cheeks
thinning
your body stretching
in a monogrammed sweater.
The toddler a shadow of you,
the boy taking over.

I see a future in your face,
a history already written.
I say goodbye —
the smooth soft skin
sweeping across mine.
The door angled
you exit
gentle air wafts
as I close.

Compassion

Filed Under (Advocacy, Critical Disability Studies, Discrimination) by Estee on 17-11-2010

Below is a reading from my favourite author Milan Kundera excerpted from The Unbearable Lightness of Being.  It would have made (and now makes) an appropriate accompaniment to my essays of several years ago titled The Economy of Pity and The Mismeasure of Autism — the latter which was included in Wendy Lawson’s book Concepts of Normality: The Autistic and Typical Spectrum:

The Gateway Project

Filed Under (Research) by Estee on 15-11-2010

Autistic Self-Advocacy Network

Be Included in Autism Research

The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) and the Gernsbacher Lab
believe in research WITH autistic adults, not just ABOUT autistic adults.

Together, we have created the Gateway Project, which is an online gateway to research that

–  encourages the inclusion of autistic adults in matters that affect them;
 –  includes autistic adults as equal partners in research about autistic persons;
 –  answers research questions that are considered relevant by the autistic community;
 –  uses research findings to effect positive change for people on the autistic spectrum.

The Gateway Project needs your help, whether or not you are on the autistic spectrum.
If you’re at least 18 years old and have access to the Internet, you can participate in a series of online research
studies. Upcoming studies address topics such as healthcare, well-being, and problem solving.

To participate in the Gateway Project:

1. Register online for a Gateway account starting at http://www.thegatewayproject.org
2. Take the online Gateway Survey. The survey takes about 20 minutes to complete.
3. You will be notified by email when new studies for which you are eligible become available.

Completing the survey entitles you to a 1 in 25 chance to win a $25 Amazon.com gift certificate.
If you would like to learn more about the Gateway Project, you can

Go to the Gateway home page at http://www.thegatewayproject.org
Send an email to info@thegatewayproject.org;
Make a telephone call to Dr. Morton Ann Gernsbacher at 1-608-262-6989 or Christina Nicolaidis at
1-503-494-9602

OHSU IRB # 3762; UW IRB# SE-2008-0749

Principal Investigators: Morton Ann Gernsbacher, PhD, University of Wisconsin–Madison
Christina Nicolaidis, MD, MPH, Oregon Health & Science University
Please pass this information along to your friends!

At What Point?

Filed Under (Acceptance, Inclusion, Joy, Research) by Estee on 14-11-2010

At what point do we stop participating in research studies? I think about this as I receive another request to do so with Adam. We’ve received many of these notices and requests over the years to participate in one research study or another — none of them very appealing to me.

Adam is eight. He began his life as any other infant and toddler. Then suddenly, at the age of 19 months, before he was two (!), he was diagnosed as autistic. Everything at that point changed in our family life, although Adam had never changed. Our views of him had changed by virtue of a label, a screen through which we now saw him. We spent time in doctor’s offices, with diagnosticians and therapists galore. Life has been nothing but a stream of experts and research trying to figure him out. As his mother, I’ve accompanied Adam on this journey, and even subjected him to this.

Although I’ve always been so inclined, and this is likely a natural progression for me, I feel as if I’m entering a period of trying to look at myself objectively as his parent and how I need to figure myself out. How have I managed, after all, with autism and the many things that life brings? I am becoming far less anxious about what Adam will be when he grows up to trying to figure out what will make us simply content in the day-to-day. The work we need to do should be less about fixing people than on creating an inclusive, welcoming communities.

After all, life is extremely fragile. The odds of being born are slimmer than we imagine. Nature has a way of aborting the “wrong combinations” of genes. Yet, there are so many fragile people who have usurped the odds and reached the point of being born. Who is to say that autism or any other disability in this sense, then, is “wrong?” Perhaps there is no real genetic “order,” and “normal,” is not one complete genetic sentence. It is a new way of looking at disability. It is a new way I can look at Adam who continues to overcome so many odds. Adam is here. He forced his way into the world and he not only survives — he thrives.

Today I can’t stop thinking about Adam’s quality of life, and what that means for him, not me, although the quality of mine seems to improve everytime I look at Adam and enjoy him. He must be taught, he will grow, and he will develop his own need for independence. No matter how severely disabled one is, the will to be so is strong in all of us, even when we need others to assist us in our daily lives. I’m reluctant to be a part of research studies as they are crafted right now — to subject Adam to batteries of tests and “experts,” even if some of these studies may be valuable. I know there are some disorders that may benefit from studies, although my thoughts are still inconclusive on this. Still, I do not want Adam to view his life as if he is living in a sort-of test tube. I do not want to get angry at people who will view, by virtue of their research role, on-looker and so forth, Adam as a subject or a pathology. Hey, he made it after all. He deserves to be here. Researchers should be throwing rose petals at his feet! (Hmmm, that’s an idea. Celebrate life. Novel.)

So I don’t participate. We don’t need false expectations and I don’t need the pain of prejudice, that is, that subtle suggestion that we should be doing something to change Adam and make him better. I am much more interested in, not the genetic code, those “incomplete genetic sentences,” if you will. I’m interested in book of life we are writing — fragmented to full sentences, idiosyncratic spelling, words, noises and all. We are born to give back to the world, to contribute, and to find the beauty in our lives. As I grow a little older, I no longer see the value in competition, in being the best. I see the necessity of working together in creating a more just world.

Hummingbird

Filed Under (Acceptance, Autism and Learning, Behaviours) by Estee on 05-11-2010

Tagged Under :

I’ve always called Adam my “little hummingbird.” The way he flaps his hands and can dart back and forth, particularly when he seems to me “revved up.”

So many speicies receive respect from us in the sense that while we do not fully understand their behaviour, we know there is purpose and meaning behind it.

As I continue to work with others regarding Adam, I proceed with caution. The goal in getting Adam to focus, still seems to hang on getting him to stop these behaviours. We believe that once he stops, say, hand-flapping, he can “stay on task.” It’s certainly a challenge if we expect Adam to do something in particular that other typical kids do.

I am not dismissive of this or maybe even some need for it. Except, as his parent who watches him day in and day out, who can see his anxiety on some days after certain events which then can increase this “over-arousal,” I am trying to encourage Adam’s team to engage in his activities. I find that when I hum like him, vocalize and turn it into song, Adam looks at me with a rapturous smile. Working with Adam, as with anyone, involves a total respect of him and his needs and behaviours as well as a compromise from both of us. As adults, it’s up to us to learn how to teach Adam, and kids like him, to be creative thinkers. I don’t believe that we teach autistic kids to do this. We teach them to repeat back to us what we want them to. While we may want them to be creative and critical thinkers in the long run, I have to ask as I hope all of you do too, how are we nurturing this?

I want to learn how to teach Adam to think and act creatively, as I recognize that most of his day is spent with people telling him what to do… and to “quiet” his precious hummingbird hands.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.