My big girl had a wee bit of a meltdown on Saturday. You may have heard that a growing number of parents are refusing to vaccinate their children. The LA Times had a big story about the growing number of unvaccinated kindergardeners last week. You can find that story here. My girl heard me talking about the article with my younger daughter. She heard my younger daughter ask me why parents didn't want to vaccinate their kids, and then she heard me say, "Some people think vaccinations can cause things like autism."
And that was when the meltdown started. Actually, the meltdown didn't start right away, because at first she had to really think about it, she had to put all the puzzle pieces together. It was a while before I heard her crying in her room. It was a funny kind of crying, part grief, part heartbreak, part anger. She said to me, "What's wrong with those people? They would rather risk their child dying of some horrible illness than have a child like me, someone with autism."
Ah. There it was. And she was right. In all the debate over vaccinations, the unspoken truth is the one she recognized right away, and that most of us read right past. There are people who would risk their children getting something like polio or measles--illnesses that once routinely wiped out entire families--than have a daughter like mine, a daughter who is disabled.
Now, as the parent of a disabled child I can tell you right now that I would rather have a child without a disability too--so don't think I'm getting all judgey on you. I'm not. I'm just asking you to think about a truth that is veiled for most of us, unless, of course, it is a truth that is faced directly by you and you see it for what it is: a statement about what our society likes its humans to look and act like.
When my girl said all this to me, I said, "I can see why that would feel hurtful to you. But remember too, Autism is a spectrum. You are very articulate. You are in community college. But some people on the Spectrum never even talk. All most parents really want to know is that they can die and their kids will be okay. Some parents never know that. It is very hard."
"But even if they can't talk they are not less," she said. "They are just as good as anyone."
And this, too, is true. Is my daughter less because she has autism or epilepsy or learning disabilities? Is she less because she is not at Stanford? Will she be less if she cannot succeed in community college? What if she can never hold a job? What if she can never live independently? Will she be less then?
You're probably thinking, no, of course not. So would you want her as your daughter?
You can say no. I won't blame you. I know how profoundly hard it is to live with a person with special needs. These are not philosophical questions for me. This is my real life. And it is hard. I know that as much as I think my daughter is as fully whole as anyone else, that I live in a world where she will not be treated as whole, where she will have fewer opportunities, where her challenges will often make other people's lives more inconvenient. Not everyone will want to work with her. Not everyone will feel like she can pull her weight. And that that is a very difficult thing to contemplate as I get older and worry about what will become of her.
But think it through. Think it all the way through, the way she did. If you do not want a daughter like mine, if you would rather risk your child getting a deadly illness (and unless you are ready to deny history you must admit they are deadly) then aren't you playing a sort of eugenics game? Aren't you saying I am really only interested in this baby as long as it doesn't have a disability that I believe might be caused my this vaccine. I would rather have my baby die than suffer through the parenting of someone with this disability or than see them suffer through that disability.
Hey! You can say yes! I won't judge you. Because parenting a special needs kid is not for the feint of heart (and believe me I am totally the feint of heart so I know).
But maybe what we really need to do is worry less about whether a vaccine might cause autism and more about how we can build the networks we all need when the myths of perfection or independence begin to unravel, as they will for all of us. For we are all of us imperfect and we are all of us dependent, and if we could see that our humanity lies in those imperfections and those dependencies then maybe we would see that we are all of us whole and good enough and that none of us is
less and that, because of that, we will always have someone's back and someone will always have ours.