I'm not much of a joiner. I tend to shy away from groups and causes. I was once a girl scout and I joined a book club a few years back but I can't think of many other joiner-type activities that I've been involved in over the years. I did not join the Special Olympics drive to ban the r-word, either. At least not in the sense that I signed the petition. It isn't that I disagree with the concept. You know, let's all try not to use words that are hurtful to other people. I can get behind that. I can stand up for that in my everyday life. And that is what I think it will take: many people taking action in small ways in everyday life. The petition is nice because it awakens everyone to the need for conversation about the topic and I suppose that is as good a place to start as any. But for autism awareness day I also won't be posting on my blog with blue text or sending blue e-mails or wearing blue clothes. It isn't that I don't agree with the sentiment -- that people need to be more aware of autism, what it is, how it affects people -- it's just that I wonder what exactly it is that we are trying to accomplish with these efforts at awareness? Because awareness without knowledge and meaning doesn't make a lot of sense to me.
Along these same lines, I would like to know why, in the autism community, we haven't examined our own terminology a bit more because I think it impacts the message we are trying to get across. The whole campaign to 'ban the r-word' had me thinking about how we describe people with autism. In my last post I referred to what it felt like to have one's child on the receiving end of another descriptive term that I find equally objectionable. I can't imagine anybody, ever, feeling good about having themselves or their loved one referred to as "low-functioning." But I also can't tell you how many times I've heard a professional use it or how many times a parent has told me that his or her child is "high functioning." And every time I hear it I wonder why in the world one would choose to describe a child in terms of his functioning. How do these words influence our expectations for those individuals we are describing? And what does this language convey to someone who might not know a whole lot about autism? It seems to me that it somehow starts the discussion by putting the person with autism in the category of "other" and "different" in a way that has very little meaning. It doesn't exactly tell anybody anything useful as far as I can tell because it often does not reflect real world challenges that these individuals might face. I also find it incredibly de-humanizing. My refrigerator functions; my child lives, loves, laughs, is challenged, is creative, is playful, is silly, is persistent and cooperative. He is a brother and a son. He rides his bike better than most adults I know. He is incredibly easy going. He has a lot of anxiety. Communication does not come easily for him. Ask me how he functions and these are the things I'll tell you.
When I was in graduate school I took a linguistic anthropology class in which we studied how language and thought mutually influence one another. You see, it is very hard to figure out the chicken and the egg with respect to language and thought, but it is clear that each would remain fairly static without the other. Words and ideas shape each other. In terms of the r-word and now the f-word (functioning, that is, high and low), it is pretty clear to me that what needs to change is not just our use of these words but, importantly, the thinking that goes with the use of the words. So simply saying: "Don't use the r-word (or the f-word)," is not enough because it doesn't do much to change how people think about individuals with disabilities. And "Let's be aware of autism," also doesn't do enough to shape a person's thoughts about the issue. And that, my friends, is a tall order. If there were an awareness program that would help everyone to see that my son, and others like him, are full and complete beings, valuable to family and community, loved, loving and full of worth, then I would surely become a joiner.
In the meantime, I'll keep doing what I do every month, every day, of the year: I won't limit the opportunities I offer Oliver simply because he has autism. I will go with him everywhere our feet take us, even if I worry, even if it may be uncomfortable for Oliver, for myself, or for other people. I will keep trying to find our place in the world. I will talk to people about autism. I will talk to people about Oliver. I will use words that humanize, not pathologize. I will try, with my words and deeds to influence what people think about Oliver and about autism so that finding our place in the world won't be so bloody hard.
And I'll wear every color of the rainbow while I'm at it. It seems only right.