Wednesday, September 2, 2009

my cause

I've never been to an autism parents' group.You might wonder why I haven't availed myself of the advice and support of other folks in my situation. But I've never even been tempted. I tell myself that I avoid these meetings because they might not help since every autistic child is so different. That the meetings are probably bogged down by endless conversations about vaccines and diets, mercury cleansing and treatment controversies. While I would feel uncomfortable in any setting where those themes dominated, there is another important reason that I avoid these groups. I do not want autism to become my cause.

Let me admit something that might make me lose friends. I hate it when people promote a cause because it happens to affect them personally. For example, there's the person who sends internet petitions about library funding because their niece is a librarian. Or the person raising money for a walk-a-thon to fund kidney transplants because granddad just had one. While I am completely sympathetic to public institutions like libraries and the profound impact a family member's illness can have on a person, the whole thing smacks of selfishness to me. It's like saying, "This should be your problem because it is my problem. I didn't even know it was a problem until it affected me. But now it is the most important problem and I want you to think that, too."

I think I'm impatient with these promotions of causes because of the topics I research. I study two things: early American prisons and nineteenth-century Indian wars. These are not pretty topics. Yesterday, I was reading about Minnesota in the 1860s. A government official withheld food aid from native peoples confined to a reservation and then remarked that they could eat grass if they were hungry. In response, the Indians started a war in which hundreds of settlers, including women and children, were murdered. When you study stuff like that, life with an autistic child hardly counts as tragedy. I can't get on a soapbox about autism because every day I read about other human beings, other people in this country's history, who had their cultures destroyed, their freedoms curtailed, and sometimes their lives taken. I don't feel self-righteous about studying this stuff. I just think that these stories of injustice demand more of our empathy and activism than what I experience daily, no matter how heartbreaking it can be.

But maybe I have always wanted to take up causes for forgotten people - like criminals and Indians - as a way to tell myself that I am not as vulnerable as they are. Somehow, by studying them, I can insist that I am fine and have the time and energy to be concerned about someone else. So maybe I don't go to autism parents' groups because that would mean admitting my own vulnerability. Going to a support group might mean that I need someone else to take up my cause, rather than me being able to take up theirs.


  1. Yikes! Tough stuff. I understand this. I had a very tense place in my interview at unnamed graduate school where a certain unnamed party was suggesting that perhaps I didn't have enough experience with mental illness.... maybe I was shallow about it because I didn't have a seriously depressed family member like him/her.... I just buttoned up....

    The personal side of my dissertation is just way to personal....! And, I certainly didn't want to throw it down like some sort of trump card.

    I think it might be a Midwest thing.....

    This blog though really blows this all out of the water, Jenn. It is really very, very excellent and you would be a fool not to realize that.


  2. I never joined a juvenille arthritis group because I didn't want to become like a woman I used to know whose whole life was consumed her child's deafness. I wanted arthritis to be just one part of our very full family life, a part we could choose to ignore sometimes. Turns out it consumed us anyway, and I have wondered if I would have had more of the information that I needed if I had allowed myself to get to know a person or two who was obsessive about their child's arthritis, who made it their business to learn everything about it, to know more than our doctor knew, more than anyone could stand listening to, who knew even the whacko stuff. Maybe it wouldn't have helped. Maybe I would have run from them if I had in fact met them. But I can't help but wonder.

  3. We all need somebody sometimes. And sometimes it helps to be someone not only who is willing to be there but also someone who "gets it". It doesn't mean it's the biggest issue in the world, but it may be what needs the most attention in your life at this point in time.


  4. Autism isn't a a life. You congregate with others and share your life in that a "cause"? Just because people gather together to share with one another their lives, their experiences of what works and doesn't work, school issue, legal issues or just how thye are doing today doesn't mean they are waving an "Autism Flag"