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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Friday, February 24, 2006

 

What I've Learned So Far

In my recent quest to ask some lingering questions about autism, I've learned that all parents love their children and the journey with autism is a complex and emotional one.

I think there is a point here for all activists, even to those who are autistic, in fighting for equality. The emotional journey this is for parents is significant and shouldn't be underestimated for the sake of philosophy. Sometimes, the fight becomes more important than the person, and when this happens, we have to reconsider the position from which we argue. I think parents deserve all the kudos in the world for doing everything they can for their kids with autism. As long as we all have an open mind and an open heart, our kids will thrive. Children thrive on love. (disclaimer: sometimes parents do things out of "love" for their kids that are medically dangerous -- I will never agree with parents on that).

In respecting parents, emotions, feelings, (I have my moments), when we have the energy, the arguments for equal rights for the disabled, I believe, are still vital ones in order to obtain the respect and concessions our kids will need. We may debate a great many issues, but let us never judge one another through a blog -- we can never know how people live, in what circumstances, and just as much as we have to respect the rights of people with autism, we have to respect the work of the people who parent them.

I've been debating what to write this past day or so -- what it means to write a blog (a self-gratutitous act, notes for my book, sharing with a community), and have come to the conclusion it is all of that. I may be wrong, I may be right, I may provoke to the point of annoyance, but in sharing all of our words, the point of this, for me, is to learn. And I must say, many of you are helping (read Zilari's response to my request to write on "How and What to Teach" -- thank you so much, Zilari!! (see PartProcessing in sidebar). As a parent, I am no expert on what it feels like to be autistic -- from a social discriminatory sense, from a sensory perspective, but I can be an advocate for my son and continue to try and work for his best interests. I AM, however, an expert in what this feels like for me, and how incredibly insensed I become at anything that smells of discrimination, or alludes that my son is less than human, normal, because he is autistic.

I will continue to have many questions -- I will debate and provoke standards, systems and popular thinking because it is important for ME on MY journey -- I'm very interested in the rights of the disabled, a movement which has only surfaced recently despite an enormous international disabled population. The next questions I will have when I get home from Florida is the construction of "normalcy," a construct that is as recent as the mid-1800's. Also, I am interested in PreRainManAutism's (see sidebar for link) posts on anthropology and autism, which puts a lot of today's hype into focus.

So for what it's worth, as I suffer from a migraine and consider the burdens I often feel in the face of what may lie ahead for us, despite debates, my heart is with every fellow parent out there.

6 Comments:

Anonymous Anonymous said...

It may be proudly said that you hold your head up high to the fire.

Scorpio

7:13 PM  
Blogger Stephanie said...

Well said. Parenting a child with autism can be challenging (I have three, though the youngest isn't all the way through the diagnostic process yet), and advocating for your child can sometimes be worse, over-shadow the parenting, and be far too draining.

Sometimes each of us needs a reminder to focus on what is important--our children.

2:59 AM  
Blogger abfh said...

I hope your migraine is better now.

Looking forward to your next posts; you've mentioned some interesting topics.

12:54 PM  
Anonymous kyra said...

amen, estee! i couldn't agree more. hope your migraine passes QUICKLY. i send you my very best.

1:05 PM  
Blogger Mom to Mr. Handsome said...

Estee, I really enjoy reading your blog. You have such well thought out points. I like how I can read your entries and leave with a new idea everytime.

Thanks,
Kristin

2:35 PM  
Blogger KCsMom said...

Hi Estee,

What a handsome little fellow Adam is!

I love reading your blog and learn so much each time I stop by.

8:33 AM  

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