10 August, 2010

who does sadness belong to?

I was just rereading the transcript of the May 30 IACC meeting and I came across a particular saying that Francis Collins used in his not-especially-sensitive comments.

"A parent is never happier than your saddest child."

Now, what does this mean? Is autism the same as sadness?

And if Autistic children are sad, does their sadness belong to their parents instead of to them?

Collins, who amused me by saying, "I know this is a tough time for anybody, any family, any individual who is going through the experience of raising a child with autism spectrum disorder" (bending over backwards to include all family structures, but forgetting that actual disabled people might be having a tough time), probably does think that. What does it mean if you don't even have the rights to your own sadness?

A few months ago I was consumed by the idea that my parents would have aborted me if they had known I would have ASD. Despite knowing it would lead to a lot of drama, I couldn't help but ask my mom if this was the case. She said that she wouldn't choose not to have me now that she knows me, but that if she hadn't known me but had known "how sad you would be," she might have had doubts about bringing me into the world.

The thing is I don't think of myself as a sad person. Obviously there have been occasions when I've been really sad, but I'm a pretty dissociative person (which is scary, but I guess it happens because I need it) and I also tend to produce a lot and be very spiritual when things are going badly. I'm not saying I enjoy being sad but I just don't think of it as being a big part of my life; it doesn't happen that much and when it does I focus more on the byproducts.

The worst thing about times when my life is going badly is that my mom won't stop talking about it and basically criticizing me for wanting to do other things than emote about how bad things are. I feel like she doesn't understand that if I did constantly do that, my life would be terrible. I couldn't think that way, so I don't. The way things are, I'm more guilty about how sad she is about my "sadness" than I am actually sad myself.

It becomes an affront to her that I am not worried and sad in the way she thinks I am or should be. It also becomes insensitive for me to be uncomfortable with the idea that I maybe shouldn't have existed because of my sadness--it's insensitive to her, because my sadness doesn't belong to me, it belongs to her.

It kind of reminds me how fans of Jerry Lewis and his telethon will accuse his opponents of being "bitter" or "hateful" when in fact the opponents are the ones being positive, and the telethon is negative. Even though Jerry Lewis doesn't have muscular dystrophy, he has ownership of it and gets to decide how it feels. If people with MD don't consider their lives to be tragic, then they're taking away something that belongs to Jerry Lewis. Somehow, they're the ones being mean.


  1. I'm always floored by how people say they focus on the experience of autistic children (which can be iffy in its own right), but then really take the children out of the equation totally and just focus on their NT relatives. Like, Autism Speaks says "We want a world where no family has to live with autism." How much more centered on the family can you get? They're basically saying "We love the families of autistic people so much that we want to take away their pesky autistic relatives."

    Man, your mom really bothers me. Even if (in part) the point of the post was to point out to people how bothersome your mom is, that doesn't detract from my botheredness.

    I don't think that being autistic makes people automatically sad somehow. I've had friends who are generally sadder than me, and friends who are less sad. At work, we get kids who I think of as being sad often, and kids who (to me) appear quite happy. Etc etc. I mean all of this is obvious (to me and you) but not so much to other people.

    My dad also said they would have aborted me if there were a test, because if they heard "autism" they would have assumed that I wouldn't be able to talk or live on my own. And when I was diagnosed with PDD, they were crying because they thought that that still might happen. I really don't know what to make of that. I think it's part of "wanting the best for your child," but it comes with having a really twisted view of what "the best" is.

  2. When I was a kid, someone told me, "still waters run deep." Like my Dad, I think I am just more intense than most.