On Changing a Culture

When I first read the young adult novel Gathering Blue, by Lois Lowry, it didn't immediately occur to me that the blue thread in the story was a metaphor representing the social contributions of people with disabilities. I won't describe the book in too much detail because I do not want to spoil it for anyone, but I'll say briefly that the setting is a post-apocalyptic village where anyone with a serious illness or disability is thrown out of the village to die, and the plot has to do with a girl's quest for blue thread to repair a damaged historical tapestry on a ceremonial robe. As I understand it now, I believe the author means to say that the diverse groups of people in a society, and perhaps individuals as well, are like the many colors in a tapestry; as such, neither the ceremonial robe nor the village could be made whole until they were all gathered together and made part of a shared culture.

The tapestry metaphor came to mind after I read a comment that Amanda wrote last week in response to my argument that the word "meltdown" should not be used to describe the behavior of an autistic person because it has melodramatic connotations of nuclear disaster and perpetuates a stereotype of autistics as violent and irrational. Amanda disagreed, pointing out that the word has been used within the autistic community for the past 15 years or so, and going on to say:


I would never attempt to join a culture and then say within a few years of joining it, that the culture's longstanding words are inappropriate and just now being defined, just because the wider community doesn't know them yet.


I take this to mean that because I have only been blogging for about three years, I am a relative newbie in the autistic community, when compared to those who joined listservs and support groups in the 1990s. This characterization seems to suggest that belonging to the autistic community is analogous to coming out as gay: that is, a person first discovers that he or she is autistic and then makes a conscious decision to associate with others so identified, thereby becoming part of a culture to which he or she did not previously belong.

With all due respect, that's not how I see it at all. The autistic culture did not spontaneously appear when psychiatrists noticed that there were enough autistics to start putting them into group therapy sessions, or when the first online support groups were formed. We didn't just recently develop a cultural identity as a consequence of getting diagnostic labels stuck on us. Our families existed and had a culture long before there were any online communities or support groups; before the psychiatrists invented the label; before there was such a thing as psychiatry; and before the Industrial Age gave rise to the concept of sorting people, like manufactured products, into the normal and the defective.

As I have mentioned before on this blog, I did not grow up with the label "autistic" because my parents did not believe that it would be helpful. That is not to say, however, that I did not grow up with a culturally autistic identity. My father is clearly on the spectrum himself, and my mother has some traits. The way they raised me was determined to a large extent by the resulting experiences, values, and perspectives that they shared.

When my parents noticed that I had a strong interest in letters as a baby, they filled my room with children's books and read to me every day. They started taking me to the library and, when I was two years old and could write my name, they gave me an application to sign so that I could get my own library card, which became a prized possession.

My bedroom had a small cupboard above the closet, which could be reached by climbing on my sturdy bookcase. I put a pillow and a straw-colored blanket in there and pretended that it was the loft where Heidi slept in her Alpine cabin. That was my favorite quiet spot for reading. My parents obligingly put on a show of never noticing that I used the bookcase as a ladder.

One year my birthday presents consisted of an electric typewriter and an office surplus desk for my bedroom, complete with drawers full of paper, marker pens, and a stapler so that I could write and illustrate and "publish" my own books.

I remember walking barefoot through damp grass at midnight, wearing a long nightgown and imagining that it was a medieval lady's dress and that I could walk forever along a stairway of clouds in the misty moonlight. I was about eleven or twelve years old. My mother told me the next day that it was not a good idea to walk alone at night, but she avoided saying why. I suppose she didn't want to take away too much of the magic.

What would I do at college, I asked, some years later. It's for broadening one's horizons and becoming a well-rounded person, was the answer. So I wandered through the course catalog and picked whatever looked interesting at random, blissfully unaware that other people went to college to prepare for jobs. In retrospect, there probably was an undertone of "find a good husband" in there somewhere, but if so, I never noticed it at the time.

This was the world in which I grew up—a world of curiosity, exploration, fantasy, and infinite possibility. This was, and is, my autistic culture. This is what I seek to preserve for future generations. I started writing my blog with the express intent of bringing about far-reaching social change; and there is still just enough magic left in my world so that I can believe it to be possible.

To make myself completely clear, I do not mean to suggest that the online autistic culture is in any way less valid or less worthy of respect. I would not presume to pass judgment on the relative value of two cultures. My point is simply that the online autistic community also should not presume to declare itself the exclusive autistic culture for all time.

It's just another strand in the tapestry.