One day, my mother gave me $20 and told me to go buy myself a book. In the bookstore, I saw a book that caught my eye - Before and After Zachariah
, by Fern Kupfer.
I wondered what was so important about this Zachariah person, that she divided her life by him. My guess was that he was a disabled kid, more specifically her
disabled kid. I" picked up the book. My guess was correct.
My first sense that this book would not be pleasant to read was the blurbs of the cover. They claimed that this book was an example of why some kids really did need to be institutionalized. Being opposed to institutionalization, I figured that I'd disagree with the author.
I started reading it anyways, and decided to buy it and take it with me. When I got back to Mom, it turned out I'd misunderstood her - she had told me to bring her back much more change than I had, after buying the book.
I convinced her to let me read the book before returning it, and wrote down quotes from the book. It was a gruelling process. I kept wanting to scream at Fern Kupfer that her son Zach was a worthwhile person, not "damaged goods" (as she calls him in her introduction). But being in a hurry, I had to stuff my anger down and read.
This book has stuck in my mind since. I keep wondering about Fern Kupfer, wondering about how she was blinded by prejudice. She kept contradicting her own views without noticing. She noticed that Zach never cried if someone held him gently and cuddled him, yet claimed he cried for no reason. She noticed that he understood the word "light" yet claimed it was OK for his sister Gabi to yell insults at him because he wouldn't understand what she was saying.
Fern Kupfer shattered my innocent assumption that anyone who really got to know a profoundly developmentally delayed person would see how worthwhile they were. Here was a parent who didn't get it.
But one thing I've just realized now is how her view parallels many parents of autistics. And I realized the true tragedy of disability rights elitism."One day we saw a film on institutions and the handicapped. It was a scare show. Beds and beds and rows of bodies in beds. Semiclothed people nodding off in corners, sitting in wheelchairs that faced walls. In contrast, there were scenes that depicted just how much handicapped people could do if given proper training and the right chances. The end of the film showed a man in a wheelchair boarding a handicapped-accessible bus, going to his job as a computer programmer in a handicapped-accessible office. The message was that institutions were terrible, inhumane places in which to live. The message was that handicapped people can become more self-sufficient if society helps to provide the options. Fine. What was the matter? Why did the film leave such a bad taste in my mouth? I looked across the room at Gail. She must know, I thought, that Scott [her son] would never board a bus to go to work, no matter how many options he has. The film intimated, in a subtle and insidious way, that institutions themselves were the reason these people looked and behaved so bizarrely, that given proper therapy and programs all handicapped people could live productive lives."
There are many criticisms autistics and other disability rights activists could give. But I want to go to the heart of the matter. That film didn't show how people like Scott and Zach could be accepted and respected. It showed the success of people who weren't all that different from the majority and contrasted it with people who were very different. Fern Kupfer was right in saying that some disabled people won't ever fit the stereotype of the able disabled.
She knew that Zach couldn't fit that view, and instead picked the other. She institutionalized him when he was still very young. By the time she wrote the introduction to the book, when he was five years old, he'd been in the institution for quite awhile.
How does this parallel parents of autistics? Well, when a parent of a nonverbal, diaper wearing 8 year old hears that autism shouldn't be cured because autistics have X, Y and Z talents, and looks at her son, who doesn't have those talents, she's unlikely to decide not to try to cure him. She's likely to just dismiss those arguments.
Some people, when they see her dismiss these arguments, reply that her son could end up like the high functioning autistics opposing a cure. There are autistic adults who present as high functioning who started talking in their late teens. Autistic development is notoriously unpredictable.
But he might not. There are autistic adults who wear diapers and don't speak. If she is to hold out hope for a sudden developmental spurt, why not feel as though she's actively working to bring it on? She might notice the hypocrisy in their view that she musn't hope he becomes normal but is encouraged to hope he becomes high functioning autistic.
And the sad thing is that, although the basis for their arguments applies only to a certain group, the conclusion is just as applicable to the whole spectrum. The conclusion that you shouldn't institutionalize your child applies to people like Zach Kupfer as well as to people like the man boarding the bus. The conclusion that autism shouldn't be cured applies just as much to people like the nonverbal, diaper wearing 8 year old as to people like Temple Grandin.
This is because so often people reach conclusions like that instinctively, then grasp for explanations. And they miss the true reasons. You shouldn't institutionalize your child because they are a person and deserve a place in your community and your heart. You shouldn't cure autism because the autistic person is a person and deserves to be accepted for who they are.
But the sad thing is that when people challenge only some stereotypes but not others, only certain select groups are helped. Others are locked out of their view of diversity, their view of advocacy. It doesn't really matter whether the person will ever fit their view of diversity, what matters is whether the ones with power over that person think they ever will. That's what locks them out as exceptions.
It's not always that way. I wonder what Fern Kupfer would've done had she read Does She Know She's There?
instead of watching that movie. The author of that book, Nicola Schaefer, kept her daughter Cath home when everyone advised her to intitutionalize Cath. Cath is not exactly like Zach, but similar enough that her story presents a view of how a person like Zach or Cath or Scott can be part of the community, can be truly loved and accepted.
And I wonder what many of those parents of autistics would do if instead of constantly hearing about Einstein having been autistic and how people like Temple Grandin don't want to be cured, they heard things about people like Amanda Baggs
not wanting a cure. If rather than training parents to ignore disability and focus on talents, we showed how disabled people don't need to fit the stereotype of the able disabled (Amanda Baggs only fits the stereotype I made based off of her).
Yes, there are people who do that, but not enough. Too often we're drowned out by others. One problem is that since our arguments reach the same conclusion, people assume we're the same. When I went onto the Evidence of Harm listserv and expressed my view, I got a private message from a bitter parent of a low functioning autistic who said that she'd be willing to listen if someone showed her an argument that took LFAs into account. I did, but she'd missed that.
Another important note is that sometimes people have already made choices that the view they oppose says are wrong. Chances are that kid already had gotten attempts to cure xyr autism from xyr mother. Parents are stereotyped too, as either perfect parents or horrible parents. So when someone tries to criticise them, too often they assume they're being called horrible parents.
Our society needs to acknowledge that parents can make mistakes and still be good parents. My parents made several mistakes that wounded me deeply, the biggest being that the let my cousins become my foster siblings. But they meant well. They didn't want me to be sexually abused by them. Most people seem to be able to understand that a parent who lets an abuser have access to their child because they don't know that person is an abuser shouldn't be blamed for it. But it is also true that a parent who chooses a damaging goal for their child without realizing it is damaging is also not to be blamed. For the most part my parents accepted me for who I was, but they tried to force me to eat food I couldn't bear the taste of. That was a mistake, and was damaging to me (I still feel shame about my picky eating) and they certainly knew they were trying to force me to eat those foods, but their intention was to help me, not hurt me. Our society needs to understand how a caring parent can make a mistake that harms their child and still be a caring parent.