My friend and fellow writer, Jamie Pacton, recently posted an interesting exchange on FB. Her son has autism and they are moving out West and while at a stop at a gas station, her visibly “typical” child was as she describes “screeching joyfully.” As he continued to babble, the attendant gave her a look so she explained that he was autistic. The attendant’s reply was “Oh, I’m sorry.” Keep in mind that her son was standing right there and could hear that apology for who he is. Jamie’s reply is one I admire. “Don’t be sorry. His brain just works differently, no worries.” And her question to us on FB was, “Does it raise acceptance or reinforce stereotypes when I mention he’s autistic?” I too have struggled with this question for years.
While Will has a visible disability, like Jamie, I am always quick to either answer or announce before anyone has a chance to question that Will has Cerebral Palsy. And even when they know he has Cerebral Palsy, but then he begins stimming, I also announce that he has autism. I want to explain his behaviors away so people don’t judge him against the same criteria they would a typical 12-year old boy. But, then by doing this, am I then giving others an excuse to not even consider him a 12-year old boy, but instead just a disability? An autistic, not a boy with autism. A Spastic, not a boy with Cerebral Palsy.
Also like Jamie, every time I announce or explain that Will has cerebral palsy or autism, I always first get the look of pity and then the obligatory “I’m sorry.” And that pisses me off, because like Jamie, I’m not sorry. Will is who he is. I wouldn’t change him.
But, then I have to consider my role in this communication exchange. Have I set them up to respond this way? The truth is that I don’t think people mean to offend us, but they don’t know what else to say. They don’t have any other words to draw upon or use. And I think this is because, philosophically, we still attribute words like “Cerebral Palsy,” “autism,” “Down’s syndrome,” etc… as a deficit, as something that is wrong or broken. If you broke your foot and someone saw your walking boot and inquired about it, you would explain that you had broken your foot. And, the other person would respond with “I’m sorry.” And most people with a broken foot would be grateful for that sentiment. The same is true for parents of neurotpyical children who might offer that their child’s cranky behavior is because he or she has an ear infection. We would reply with, “I’m sorry” because we know that it is painful and creates difficulties for both the child and the family.
So, what else should we, special needs parents, say? What else should they say? If we want to change the response, then we need to change the conversation. When the attendant gave Jamie “that look” (Every special needs parent knows that look. It’s the ‘what the hell is wrong with your kid- why can’t you control them?’ look), should she have instead said, “He’s just so happy to be out of the car!” Or should she have not responded at all? The truth is that it’s in our nature to explain and educate others about our kids. And if I’m honest that’s because I don’t want the others to think Will is neurotypical, because then they would wonder what kind of parent I am to have a child who doesn’t “behave” typically. Or, they might try to interact with him in a way that could put him in danger, like feed him a cookie which could choke him or try to touch him, which he doesn’t always like depending on how he is touched. I want to educate the others about how having a disability means you deserve to be understood and visible in the community. So, when’s he out and about, it’s an opportunity to explain and talk about disability.
So, again, what’s the answer? I think it starts with us as parents. My husband never tells anyone that Will has Cerebral Palsy. He just talks about Will and how he likes to play cards and watch football and hang out at home. When the conversation gets pressed, he might explain that Will uses a wheelchair and can’t play football, but that he enjoys participating as a fan. I think he leaves some people confused and with questions but he doesn’t invite them to ask. And, he never cares if Will acts differently out in public. As a retired infantry combat arms officer with a large physical presence, he has a look that shoots daggers out to anyone who dares looks or says anything about his kid. And the few people who have dared to say something to him, were quickly shut down. I have always admired his, “don’t fuck with me or my kid” attitude. But, I’m out with Will more, and I can’t do that. I’m not built that way. I want people to approach Will and to understand him.
Maybe the answer is to not respond to the look. And if someone asks or inquires, then we can explain that this is how our children show they are happy, frustrated, not feeling well, etc… And then if there are still questions, explain like Jamie did that our child’s brain works differently because our child has _______________ (fill in the blank).
Feel free to post feedback and commentary or your own stories about this question.
For example, I remember a dad I met years ago when Will was a baby. His daughter was much older and had Cerebral Palsy. He said he was out one day and someone asked him, “How does she do, you know, mentally?” And he responded with, “Well, we are working on levitation right now, so she’s doing great!”