The Eucharist and the “Ghost in the Machine”
My friends often have a very unfortunate experience with that. They talk to me while I am in the middle of “implementing my agenda,” and they see that I do not acknowledge their feelings at all. Friends who know me well stop me and say, “Hey, I just poured out my heart to you,” or “I just disclosed something hard for me to say,” and of course, I collapse into a sea of apologies. I don't realize what I did, but of course I want to acknowledge the feelings of my friends!
My autistic reality is not all that different from neurotypical reality. Humans minds work very much like computers, which is why computers are designed based on how our logical intellect works. Our minds are different from computers because emotional drives can dominate our experience. I know all about that too! I have been known to immerse myself in emotion and the “lever” that makes my brain work seems to snap completely off, while emotions drive my life. Whether we are emotionally driven or intellectually detached, we are all divided, unintegrated and crippled in our human experience.
This is the first time I've read your work, Laura, and I'm curious that you refer to yourself as "an autistic" as if it were--I dunno--an ethnicity or identity that really defines you, rather than saying "as someone with autism" or "as someone who is autistic". I have a son with severe autism and if someone refers to him as "an autistic" I don't like it. It sounds as if autism defines him, isolates him, and puts him in a separate category of human beings. Not that I"m criticizing your choice, but I just wonder how you came to it.
ReplyDeleteHi Daria,
ReplyDeleteI have been researching this subject for the last four years for my dissertation work. I spoke to several people with autism who actually detest person-first language. They consider their autism as a part of their personality, not a disorder or disease. As one said to me, "I can't set aside my autism like a suitcase!" I think, as parents, we tend to be more sensitive to the label as if it negates their humanity. However, they embrace their attribute as simply as being part of who they are, much like a person says they are Hispanic or African American. They internalize it as part of their whole person, rather than a condition. I think this is a delightful way of claiming ownership of who they are.
We, as parents, sometimes want our kids to be seen as any other kid. Our kids, however, want to be seen as individuals. It is not too different than most other kids. I had to really battle the person-first language when I began writing my dissertation. My professors would constantly correct me, but the autism community (their words) insisted I say "autistic". Since I do not have autism, I felt I owed it to them to honor their wishes. I see both sides of the debate, but I think the individuals who live that life experience should be able to declare their preference over the parents who may feel some level of apprehension for the sake of equality. Both make good arguments but to honor the community, I support their choice of words.