Monday, March 27, 2006

Locked Out of Advocacy

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.

17 Comments:

Blogger abfh said...

Hi Ettina, it's good to see you in the blogosphere!

I think you're right on target in pointing out that some parents interpret neurodiversity advocacy as a personal attack on their choices and their judgment in raising their children, made by people who aren't similar enough to their children to understand their circumstances. Because they feel threatened personally, they react with extreme defensiveness, arguments and bitter feelings.

But I have to disagree with your suggestion that it is "hypocrisy" to support neurodiversity while hoping for one's child to become high functioning autistic. The problem is the language that's being used to describe and divide autistics, not the parents' reasonable hope and expectation that their child will learn more and achieve more as the child grows older. Parents need to be aware that there is a range of possibilities and that the popular stereotypes about autistic adults are not the inevitable outcome for their child.

We shouldn't be describing people as "high functioning autistic" or "mildly autistic" on the basis of speech, or IQ tests, or other distinctions that don't make any logical sense. I wrote a post about that in my blog.

And conversely, we shouldn't be assuming that a person who is nonverbal, or wears diapers, or whatever characteristics put him or her on the "low functioning" side of the divide, can't lead a productive life. What the heck does that mean, anyway, a productive life? It's such an artificial concept in a world where all our food, clothing, etc., are produced by others.

9:20 AM  
Blogger Ettina said...

It's not exactly hypocrisy, because if you look at it through a certain framework, it makes sense to hope your kid will be like Temple Grandin but not to hope they'll be like most people. But it seems like hypocrisy to many parents.
I use high functioning and low functioning in a sociological sense. high functioning autistic is the specific term for the autistic "able disabled" stereotype, Cal Montgomery's Mary in Critic of the Dawn (http://www.raggededgemagazine.com/0501/0501cov.htm). I know that real people don't fit neatly into two groups like that, just as real women aren't all either like the stereotype of Mary mother of Jesus, nor the stereotype of a promiscous woman with a dozen STDs or a "fem-bot" with no feelings.
My whole point is that we should be showing people how a "low functioning" person can be valued and respected for their contribution to their community. Because otherwise, parents who view their kids as being like Cal Montgomery's Bruce will look at all those Marys and think "this doesn't apply to my child."

8:08 AM  
Blogger abfh said...

I see what you're saying, and I agree with you that our society needs to value and respect people as human beings, regardless of their accomplishments.

But I also think that when we use terms that reinforce stereotypes (such as low functioning) and focus so strongly on acceptance while discouraging any talk of accomplishment, that has an equally negative effect of causing this group of parents (those who view their children as low functioning) to expect very little from their children.

I've written some more on this:

Hypocrisy and Hope.

8:29 AM  
Anonymous Anonymous said...

I came upon this blog by accident.

However I'm glad I read it only if to correct you on one very big and important point you raise about Fern Kupfer and her son, Zachariah.

Zachariah was NOT autist. He was NOT someone that had potential to be high functioning, mid functioning, or whatever other language you want to use to define a person who lacks "normal" cognitive functions.

Zachariah suffered from a genetic disease that was slowly destroying his brain, with no hope of recovery. Canavan's Disease has no cure, there is no treatment and death is certain.

You might want to make sure before you castigate others and the decisions they make concerning something as important as placing a child in a facility that can care for the child's intensive medical needs that you check your facts and get it right.

To not do so reflects poorly on you and also dimishes any credibility your words would otherwise hold.

4:06 PM  
Anonymous Anonymous said...

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2:12 PM  
Anonymous Anonymous said...

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8:39 AM  
Blogger Ettina said...

I never said Zachariah was autistic. I don't think Fern Kupfer said in her book what he actually had, just that it was genetic.
Even if he had Canavan's Disease (which is, I agree, a terrible condition), he deserved to be accepted and valued for who he was, and he didn't get that. Instead he got one of the most hateful parents I've ever seen of a disabled child. His father appears to have accepted him somewhat, but not his mother. She claimed he destroyed their family, but it was really her hateful attitude towards him that did that.

8:16 AM  
Blogger Marj Whitney said...

I came upon this blog by accident but felt I had to leave these comments: I worked with Fran Kupfer on her first book "Before and After Zachariah" and I feel that if you have not walked in her shoes for at least one day, you have no idea of what living with a severely retarded child can mean. Yes, there were times when we were just getting started on the book that I had to quit typing those pages and do something else for a while as the whole story was so sad. Fran is a good mother and she did the right thing for Zachariah. He was put in a loving, compassionate, professional home. Fran is a thoroughly nice person and I loved working with her. At no time did I feel that she was thinking anything like some of the comments made about her in this blog. Marj Whitney

10:53 AM  
Blogger Patti said...

As the parent of a profoundly disabled son, I take issue with your judgment of Fern Kupfer. While her book was very difficult to read, it meant a lot to me. I read it about six months after our son suffered brain damage and was still working on dealing with the what it meant for his future as well as the future of our family. While we never did institutionalize our son, who died when he was sixteen, Fern's book let me see that it was a possible option if we ever reached a point when we couldn't properly care for our son. She didn't just toss him into some cold and uncaring institution of old; she sought out a safe and loving place for him. I respect her decision.

I'm not saying I agree with every word in the book, but it was still worthwhile for me to read her viewpoint.

12:14 PM  
Blogger Unknown said...

Sorry to disagree with you. I have written to Fern Kupfer and I admire her a great deal. Having a child like Zach and placing him in a care facility in no way disrespects him. It also in no way devalues him. Children with a neuro-degenerative condition are not on a spectrum of High functioning or not; they are not in the same discussion subject as those who can achieve a "better functioning life"...they are profoundly brain-damaged, forever dependent children. And as such, no family should be forced to undertake their care unless they feel they can and WANT to. I worked with children like this for one year. And I knew then that if I had a pregnancy with a positive test for certain conditions, I'd terminate it. I knew that if I had a child diagnosed with a condition such as Tay-Sachs I would also place them.
I raised a child with a condition that Could have become but was never disabling; I have been an advocate. To put autism and Canavans into a label called Neurodiversity and suggest we accept and respect everyone by not allowing parents to place children in care facilities for profoundly medically frail children is pointless. All you do is criticize and guilt the parents, and your own experiences have nothing to do with nor in common with Zach's. I applaud your intent but I think in this example you miss the mark. Bottom line...this is America. We celebrate the rich, the able-bodied, the ones who work. Profoundly disabled people (at least right now) have little to offer, and cannot be appreciated in a country with for-profit medicine. We are not mature enough as a society to accept, let alone incorporate much of what you discuss.

6:20 PM  
Blogger KKH said...

Wow, dd we even read the same book? How easy to sit and judge. Yes the book did say he had Canavan's. And if you got that she "hated" her son, I think that may reflect way more YOUR issues than on Kupfer. This book was painfully brave, and Ms. Kupfer dared to say what EVERY PARENT OF A SEVERELY HANDICAPPED CHILD thinks at one time or another. And then more often than not, she immediately admitted the guilt she felt for thinking those thoughts. She did what was best for Zach AND for the rest of the family. The places he lived were far better equipped to care for him. Just because you want to be some kind of martyr, doesn't mean it's right for you to berate someone else for their decision. You should be ASHAMED.

11:46 PM  
Blogger KKH said...

THANK YOU! I can't believe what this person said about Fran Kupfer. How horribly judgmental!

11:51 PM  
Blogger KKH said...

Wow, dd we even read the same book? How easy to sit and judge. Yes the book did say he had Canavan's. And if you got that she "hated" her son, I think that may reflect way more YOUR issues than on Kupfer. This book was painfully brave, and Ms. Kupfer dared to say what EVERY PARENT OF A SEVERELY HANDICAPPED CHILD thinks at one time or another. And then more often than not, she immediately admitted the guilt she felt for thinking those thoughts. She did what was best for Zach AND for the rest of the family. The places he lived were far better equipped to care for him. Just because you want to be some kind of martyr, doesn't mean it's right for you to berate someone else for their decision. You should be ASHAMED.

11:53 PM  
Blogger Ettina said...

Would you want your parent saying that kind of stuff about you?

5:58 AM  
Blogger Ettina said...

I believe that the choice to become a parent comes with a responsibility to your child. I'm not opposed to institutionalization if it's really the best option, and in Zach's case, he's better off not living with his terrible mother. Where I judge her is the hurtful ways she describes her son (in his presence, with him clearly having at least some receptive language), and the ways in which her hatred of her disabled son have hurt her daughter (she yells at her daughter for trying out his wheelchair, and later her daughter is afraid that not being able to tie her shoes means she's disabled and her mother will stop loving her).
Do you honestly think that Zach's mother would have treated him any better if he was autistic instead of having Canavan's disease? I know Canavan's is different from autism, and if there was a cure for Canavan's, I'd see that as a good thing. But no disability robs you of your humanity. Having Canavan's disease didn't make Zach any less worthy of love and care.
His mother said that even if she had in-home caregivers to the point where she didn't have to do any work to care for her son, she'd still want him institutionalized so she didn't have to see him everyday. This is the woman you're defending - a mother who can't even stand the sight of her own son.
And as for society being immature, that's no excuse. Societal change doesn't happen on its own, it happens because people fight for it. If the Stonewall protestors gave up because society wasn't 'ready', would we have gay marriage today?

6:10 AM  
Blogger Ettina said...

I believe that the choice to become a parent comes with a responsibility to your child. I'm not opposed to institutionalization if it's really the best option, and in Zach's case, he's better off not living with his terrible mother. Where I judge her is the hurtful ways she describes her son (in his presence, with him clearly having at least some receptive language), and the ways in which her hatred of her disabled son have hurt her daughter (she yells at her daughter for trying out his wheelchair, and later her daughter is afraid that not being able to tie her shoes means she's disabled and her mother will stop loving her).
Do you honestly think that Zach's mother would have treated him any better if he was autistic instead of having Canavan's disease? I know Canavan's is different from autism, and if there was a cure for Canavan's, I'd see that as a good thing. But no disability robs you of your humanity. Having Canavan's disease didn't make Zach any less worthy of love and care.
His mother said that even if she had in-home caregivers to the point where she didn't have to do any work to care for her son, she'd still want him institutionalized so she didn't have to see him everyday. This is the woman you're defending - a mother who can't even stand the sight of her own son.
And as for society being immature, that's no excuse. Societal change doesn't happen on its own, it happens because people fight for it. If the Stonewall protestors gave up because society wasn't 'ready', would we have gay marriage today?

6:13 AM  
Blogger Ettina said...

Would you want your parent saying that kind of stuff about you?

6:13 AM  

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