Normalization versus Normal Life
So, the term “normalization” is something of a dirty word in disability rights circles, and especially in the autistic community. It generally refers to making a child put a lot of effort into trying to look, act, or speak in a more typical way for the purpose of making everyone else more comfortable around the disabled person. Proponents will tell you that, the more a child can “act normal” and “fit in,” the better they’ll get along with peers, the more education and career opportunities they will have, etc..
There is, of course, some truth to this: being able to “pass” for “odd” or “quirky” instead of “disabled” or “autistic” can have a lot of advantages, especially as an adult– from not having your doctor talk to you as though you were a child to being taken more seriously in the workplace. It won’t actually make you more friends, though, at least not real friends. And the cost to one’s self-esteem can be unbearable (if you can stand reading an emotionally devastating example of this, I highly recommend http://timetolisten.blogspot.com/2013/09/the-cost-of-indistinguishability-is.html).
But there’s another kind of normalization that’s important, and that involves others treating a disabled child like a normal person. This has to be done carefully, because of course you have to take someone’s needs and accommodations and abilities into account. But beyond that– too many people treat disabled children as though they are inherently fragile, or inherently tragic, or angelic, or younger than their age. Too many people seem to think that a disabled person can’t joke around, or use rude language, or have a bad hair day, or have questions about sex, or want to go to the mall with her friends, or even be shallow sometimes.
So I’m working on treating my clients like members of their age group. It doesn’t matter if a girl still wears a diaper at age 10: I can still compliment her hair and talk to her about fashion and current movies. Even if someone verbalizes at a two-year-old level and has only started using the toilet in the past year, if he’s over age 5, I’m going to make a point of saying that he’s going to the toilet or the bathroom, not the “potty.” I used to try and equalize us the other way around– saying things like “I need to go to the potty” about myself, and I still do this with younger children (as I suspect most parents do). But with older ones, I think it’s a form of respect to avoid using baby language, to take their preferences seriously, let them make choices whenever possible (even when it’s much quicker and easier to do it myself), and acknowledge that they are sometimes uncomfortable with the level of assistance they need. It’s hard to remember that a teenager who shows no shyness about my bathing her may still not want me to hold her hand in public. That someone who can’t lift his head without help still wants to be alone sometimes and have a feeling of privacy.
I suspect, from my observation of many parents, that it’s hard enough to learn this when bringing up a typical child. Loving parents hover, and embarrass their kids a lot with various forms of overprotectiveness and intrusion. How can you not have this habit after years of a child being dependent on you for absolutely everything? But a typically developing child will start to say things like “Aw, Mom, don’t cut my food for me. I’m not a baby anymore!” or “Aaaaahhh! Don’t come into my room without knocking!” And parents, slowly, get the message.
Kids who can’t speak may start throwing tantrums when they feel like too much is being done for them, may become deeply resentful of unneeded help and so have difficulty even accepting (emotionally) the help they do need. Or, if others keep treating them like young children, they may continue acting that young, being passive about things they are perfectly capable of doing themselves and not bothering to try expanding their skills. They may decide that it’s not worth the effort to assert themselves if those efforts aren’t taken seriously.
They need the chance, as all children do, to attempt things that are beyond them, to experience struggle and failure in order to build tenacity and self-confidence. They need to be respected by others in order to learn to respect themselves. They need to be treated as though others expect them to become responsible adults, or they will never push themselves towards that goal with the belief that they can achieve it. It’s a fine line for caregivers to walk. Inherently, children with disabilities have to work a lot harder than their peers, and they are all-too-often made to work hard at the wrong things (like trying to learn to “socialize normally”). So I’m generally not a fan of heaping even more work on them. But they do need, above all else, the kind of challenges that help us to grow as human beings– challenges to our judgment, our sense of morals, our courage, our level of independence. You can be equal to these challenges without being able to move a muscle, without being able to speak a word. But only if you are given the chance.
Children with disabilities deserve, as much as possible, a normal life. Most of the kids I work with will never look, sound, or act “normal.” But whether or not they get the opportunity to feel “normal” depends entirely on the actions of those around them.