Susan's Blog

Friday, October 27, 2006

Gift of God

Today I attended the first part of Jim Fischer and Kristina Chew’s Autism and Advocacy Conference at Fordham University in New York City. The conference was another of these unique new gatherings (I and the organizers hope that it becomes an annual event), in which both those with autism and autism advocates and parents come together to discuss “the mystery of suffering coupled with extraordinary gifts,” as Jim Fischer put it, that is all part of the autism experience, and the idea that people come to the autism experience from very different contexts and perspectives (and the results of that). The thrust of the conference reminded me of Estee Klar-Wolfond’s Joy of Autism lecture series, where both autistics and NTs spoke of their experiences and exhibited art as well. These two conferences have aided in my own awakening of what the experience of autism in my life has meant to me, in a positive sense.

In our society it is very easy to see what disability means to people in a negative sense. The very word “disability” has a negative connotation with the “dis” part. Dissing is never a good thing. In fact, this was the first point that today’s keynote speaker, Special Olympics Chair Tim Shriver, made: he talked about his own term, “diff-ability.” He joked about how it sounds like you’re lisping, but other than the gracelessness of its sound, it is right on the mark.

Are you groaning at the attempt to politically rectify the term disability? Well, cut it out. That’s not what this is. Tim is merely trying to be more accurate about how he views the people in Special Olympics, the people like Nat. It is like Estee’s or Kristina’s point, or Peter Gerhardt’s point: we are talking about autism and “disability” as a different experience of the world, not an inferior or bad one. Diff-ability is more dignified, albeit awkward-sounding.

Why are so many of us at these conferences making this point? Because the paradigm around disability is shifting. As autistics find more and more ways to make themselves heard — and NTs listen — we will all begin to understand a different and extremely important worldview. More people will be able to lead happier and more productive lives, removed from shame. Getting rid of the shame around disability is crucial to happiness.

The point that hit home with me was the difficulty Tim has with explaining what he gets out of working with Special Olympics. People right away assume there is something noble about it; that what he gives is far more than what he gets. It reminds me of when people say to me, “Nat is so lucky to have you, you do so much for him,” as if maybe there were a chance that I wouldn’t do this for him, but he lucked out because I’m such a saint? Look, I know that people do not mean this when they compliment me; but I hear this sometimes nevertheless. There is some sort of implication that I am more than a mother. But I am and will always be just my boys’ mother, with many flaws to boot.

How do I (and Tim and the others) convey that there is nothing to pity here? There is hardship but that does not make my family unique. Would I love it if Nat could talk to me about what’s on his mind? Yes, of course! Would I love it if I did not have to worry about how he was going to support himself one day? Definitely. But why stop there? How do I know what difficulties life will throw Max’s way? Or Ben’s way? Does autism give me some kind of crisis crystal ball?

More than that: How do I convey that there is actually a gift here? Without sounding corny? While I was having coffee with Tim, he asked me if I’m more vulnerable now because of Nat. I thought about it and realized I am tougher because of Nat. I used to be much more of a mess (believe it or not!) in my twenties. Nat came along and forced me to grow up, to listen to my instincts for the first time, and to figure out what was important to me and my family. That little blondie threw me the curve ball of all time, and forced me to become a really good batter. With the bar mitzvah, I hit one out of the park. Other times, I struck out abysmally. (Look at me! Nat even forced me to become a sports mom!)

Nat, in his own Sweet Guy way, taught me that I can love unconditionally, and without any obvious evidence of love in return. I can love on faith. And perhaps best of all — and this is my list only as of today — Nat taught me to have faith. He taught me that shit happens, but also, development happens. If you don’t give up.

Some people curse God and the universe for visiting autism upon them. They believe that their lives or their children were stolen. I used to be one of them. Now I see mine as evidence that there is a God.

I guess you could say I’m lucky to have him.


What a wonderful post, Susan. I agree that having Adam too has made me “tougher.” I call it the lion instinct times 1000. 🙂

— added by Estee Klar-Wolfond on Saturday, October 28, 2006 at 8:12 am

Amen. Having eyes to see one’s blessings is so incredibly liberating, and we do kind of see what we look for. Lovely post.

— added by Em's Mom on Saturday, October 28, 2006 at 10:17 am

I appreciate the sentiment of most of the post.

But there’s very little so obnoxious as a group of people getting together and deciding what to call another group of people, and then having the audacity to tell those of us who object to being euphemized with yet another cutesy word, to “cut it out” and that we’re just somehow getting in the way of all your compassion for us.

It doesn’t work that way. You don’t get to define a group of people you don’t even belong to and then treat us as if we’re being silly or disrespectful if we object to the way you’ve defined us.

It’s kind of like those people who open the door for wheelchair users while standing in the way of the door, and then get upset when asked (even politely) to move out of the way, saying “Well I was only trying to help, how dare you.” All the good intentions in the world don’t change the fact that they were blocking the doorway while they tried to open it for us.

— added by ballastexistenz on Saturday, October 28, 2006 at 11:01 am

There’s a great book titled “Blinded by Grace” written by Robert Molsberry about his experience of becoming a paraplegic after being hit by a drunk driver while on his bike. Like Harriet McBryde Johnson, a disability activist with muscular dystrophy, the point he wants to make to society is that he he just wants to live his life. He’s not a hero, and he’s definitely not in need of pity. The new paradigm is to see people with disabilities as a minority, not patients.
It sounds similar to what you’re saying about autism.

I named my website Daniel’s Gift years ago when he was a baby. I wanted to present the point of view that everyone, even those with profound mental disabilities, have gifts to share. So I’m with you there.

Great blog. I’ll probably be thinking about it all day.

— added by Carolyn Murray on Saturday, October 28, 2006 at 11:41 am

I meant to write “Blindsided by Grace”. Another slip of mine!

— added by Carolyn on Saturday, October 28, 2006 at 11:43 am

Well, I was only trying to help…

Maybe you can explain to me some more how it is that anything that happened at yesterday’s conference (or my blog post) was “obnoxious?” If I’ve discovered, finally, that Nat’s autism is something that has been a gift, and I’ve admitted that this is pathetic of me, for it to have taken so long, and that I still have a long way to go. what more can I do?

— added by Susan Senator on Saturday, October 28, 2006 at 11:56 am

Thanks for this Susan—it was wonderful to have the chance to meet you yesterday. Charlie is always the brightest joy—the joy—-in our lives, and all the more in the ways in which he, like Nat, has shown us how to take joy in experiences very different from anything we might ourselves have imagined, and very varied.

Ballastexistenz, it would have been very good to have heard what you have to say about the speakers yesterday (I have yet to post on the panel on “the varieties of autistic experience” and on Kassiane’s and Phil Schwarz’s contributions).

— added by kristina on Saturday, October 28, 2006 at 10:32 pm

I was impressed by Tim Shriver. I did not know what to expect but what I found was a good father and a very sincere young man. He is showing his sons the value of each person by example. I think he is the real deal. After hearing and especially watching him speak I am very glad he is heading the Special Olympics.

— added by Mike on Sunday, October 29, 2006 at 10:54 am

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