Tuesday, October 18, 2016

The Worst of Both Worlds

I got in someone's way today.  Or something. I was on my way to a seat in voice class when someone said "Excuse me," in an aggrieved tone.

This seems to encapsulate my entire life. I am always in someone's way, always offending in some manner that I don't understand. I get yelled at. I get honked at. I get nasty notes left on my car.

And they never forgive. Today I said "oh, sorry" and she didn't even respond. It's very weird to me because I'll forgive just about anything. But NT people seem to hold onto anger forever, no matter how much you apologize. They decide you shouldn't have been behaving like that and that's it.

I can read voices and body language, at least to some degree. But I'm starting to think it's not worth it.

Saturday, October 1, 2016

Crosspost: On the Edge of Gone by Corinne Duyvis

(I originally wrote this for my reading blog, then realized it would make sense to put it here as well.)
I'm having so many thoughts and feelings while reading this that I decided to write a reaction post as I read, rather than try to do a traditional review.
The story is narrated by Denise, a biracial autistic teen living in Amsterdam. It opens as the earth is just about to be hit by a comet. Denise and her mother are late leaving for their assigned shelter, because they're waiting for Denise's missing sister, Iris.
-- I wonder if the author wrote this partially to address her own fears about how she might survive as an autistic person in a cataclysmic disaster? I know it's something I've thought about a lot myself -- one of the reasons I'm really not attracted to dystopian fiction -- and especially now that I have an autistic son.  When I told my husband the premise, that's immediately where his mind went and he thought the book would be too scary to read.
(One of my favorite stories is John Varley's The Manhattan Phone Book (Abridged). You can read it online. In it he writes,
"We all love after-the-bomb stories. If we didn’t, why would there be so many of them? There’s something attractive about all those people being gone, about wandering in a depopulated world, scrounging cans of Campbell’s pork and beans, defending one’s family from marauders. Sure, it’s horrible, sure we weep for all those dead people. But some secret part of us thinks it would be good to survive, to start all over.
Secretly, we know we’ll survive. All those other folks will die. That’s what after-the-bomb stories are all about."
Not me. I have never believed that. In my scenario, if I survive, I will undoubtedly die shortly thereafter.)
-- Denise's beloved missing sister is a trans woman. This worries me in a post-apocalyptic story. (It turns out not to be an issue at all.)
-- (32%) I appreciate the nuance of this portrait and it feels really well balanced. Denise is realistically having trouble dealing with stress and melting down, but she's also contributing. She's neither SuperAutistic Girl or Autistic Robot Girl.
--  (37%) "It's the end of the world; I knew I would have to change. "
I pondered this sentence for awhile. It seems an ableist point of view. I guess Denise means she will have to be really brave? To do things that are very hard for her? Does she really think she can just decide to change?
-- (60-something%) This plan is so messed up. Does no one think about what it will be like to spend the rest of your life stuck with people who will utterly hate you?
-- The moral ambiguity in this scenario is excruciating. I hope the story will find some good way to resolve it, but I can't imagine what.
-- Oh. Now I understand what the earlier thought about needing to change was about. It is an ableist point of view, because it's internalized ableism. Denise thinks she has to be more "normal" and useful in order to justify her existence in the post-apocalyptic world.
Ending -- Wow. Just wow. I'm so impressed with how this played out. It's an amazing book. I wish I could read it to my son without scaring him to death. This is why #ownvoices matter.

Wednesday, May 18, 2016

I Have No Idea What to Do With This Ephipany

I've been throwing myself into gardening this Spring. It takes spoons, that's for sure, but it really helps with my depression and has such good long term results.... pretty things for me to look at, and nice smells, and easy to harvest healthy food on hand, if all goes well. I have such tremendous difficulties with providing myself with food that being able to go outside and just pick some never stops feeling miraculous.

As I hoed and planted some seeds today, I found myself thinking about some horrible forms I have to deal with for a program my son is in. And it hit me how, unlike gardening, using those spoons takes me in such a negative direction. Ultimately I think the program is a good thing, and it was my son's choice to continue to go, but the ongoing red tape and dealing with bureaucracy and the driving him to and from there, and the complaints from him when he's not in the mood, and the constant worry that this isn't really what he needs...

There are so many things I want to do, that I don't have energy for any more. I hate that I have to use some much of it on doing things that make me feel worse instead of better.

Saturday, February 13, 2016


Today I came across the RAADS-R, a diagnostic tool for assessing people who may not display more obvious signs of autisms. Although it had some questions that were difficult to parse, I really appreciated the fact that it makes a distinction between childhood and adulthood feelings or behaviors. So many times I've taken autism quizzes and had the response, "Well, I was exactly like that when I was a kid..."

It's really good to have a diagnostic tool that acknowledges that autistic people change and develop over time. Lack of awareness of that fact is destructive and helps contribute to a lot of chicanery in autistm "treatment."

Monday, December 28, 2015

Finding Neurodiversity in Fiction: The Innocents by Margery Sharp

Content Warning: use of R word

The Innocents, published in 1972, has been one of my favorite books since I was a teenager. The narrator is an elderly woman in a small English village who, because of World War II, sort of accidentally adopts a young girl named Antoinette who is intellectually handicapped. She becomes very fond of Antoinette and finds herself going to extreme measures to protect her.

It is absolutely fascinating to me to examine this book as the person I am now. My first thought was that it holds up surprisingly well to a modern reading because it's very unsentimental about disability. Antoinette is not "inspiring" or sweet or attractive; she loves dead things and poop and has a tendency to throw up when stressed. Her foster mother (I don't think she's ever named, which is interesting) nonetheless loves her just as she is. The more I think about it, the more I realize the book is actually a fabulous blueprint for loving and accepting a neurodiverse person.

Antoniette's foster mother fulfills her needs for quiet and routine, while gently encouraging her to develop without pushing or forcing. She lets her enjoy her solitary pursuits, puts up with Antoinette's love for keeping dead frogs in her pockets (only making sure to wash her hands well before meals), and even plays tiddlywinks with Antoinette's preferred pieces:

"Tiddlywinks, played with rabbit-droppings instead of ivorine counters, is naturally a slow game, in fact not the same game at all, but suited Antoinette all the better, who needed in everything to go slowly."

She finds a way to introduce Antoniette to the company of other children in a non-intimidating way, though horseback riding (something now often used as a therapy for disabled children), and encourages her to speak by reading her interesting sounding words. A perfect example of how she modifies the traditional upbringing of children is that she always recites a bedtime prayer to Antoinette, and is thrilled when the little girl starts chiming in at the "amen" with "vermin," one of her favorite words and a term of affection.

Antoinette, who is almost completely nonverbal, is specifically diagnosed as "simply retarded, not autistic." Having read Neurotribes, (which everyone needs to read!) I understand now how meaningless that diagnosis was, because the definition of autism at the time was extremely limited. If Antoinette were diagnosed today, I think the outcome might be quite different.

Either way, I think Sharp was outlining a wonderful example of how to parent a neurodiverse person with love and acceptance. And to make it more fascinating and still relevant, the danger that Antoinette is faced with, from her returned biological mother, is that of living with someone who refuses to accept her needs and will attempt to force her to conform to societal convention. Without spoilers, this is a danger taken very seriously by the book, the narrator, and by Antoinette herself -- who may not be verbal, but who clearly does have feelings, thoughts, and agency. The story's ending is morally ambiguous but an absolute validation of Antoinette's rights as a human being.

Wednesday, December 9, 2015

Put On Your Yamulke...

I grew up with the knowledge that I was Jewish, a fondness of Israeli dances, and a small vocabulary of Yiddish exclamations and curses. That was pretty much it. Although I've tried at various times to add more Judaism into my life, it never really took. My husband took "how to Jew" classes with me when we were newly married, and he's the one who remembers stuff, so he's the one who cooks the latkes and explained the concept of Tzedakah to our son this year.

When our son was in a Jewish preschool, it was much easier to remember and celebrate the holidays. But he's in high school now and we've gotten pretty lax.

The one thing we always do is the very minor holiday Hanukkah, and it's not to compete with Christmas, which my husband utterly adores. I think it's partially because it's easy, and partially because it's pretty -- lighting candles and singing blessings, what could be nicer? -- but also because as I get older, Christmastime is the time of year when, paradoxically, I feel the most Jewish. I'm always grateful when they fall sufficiently far enough away from each other that the Menorah lights aren't overshadowed by Christmas tree lights.

Thursday, November 5, 2015

A Family Guilt-Off

The other day, my son and I were working out together, and he asked me a question about whether I would change anything about how I've been a parent.

As it happened, I was totally primed for that question. While seeing him off to school that morning, I had noticed someone riding a bike with a kid's bike attachment behind it. And it reminded me that I had always wanted to get one of those for him, but it hadn't happened. And I realized... I don't care. It didn't matter. And I felt really good about how much I'd let go of expectations and wishes and accepted how things are and that the past is past.

So I told him that and we had a really good conversation.

But the thing is... he kept asking the question of me and his father. At first I thought it was because it was such a good conversation starter before, but it started to have undertones. Undertones of "if you and dad had done this, maybe I wouldn't be so messed up and unhappy now." Then the undertones became actual overtones. And I started to get really mad. And insist that no, we couldn't have done things any differently than we did.

Today, I was chatting with some people on twitter about early days of parenthood, and someone said this: "The first few years I think guilt was my default emotion."

And I realized, this is why I've been so upset about my son's questioning. Because I lived with guilt for so many years, about what I did or didn't do to completely fuck my child up, and I had finally worked through a lot of it with my therapist. And now it was all coming back to me.

I went and told this amazing insight to my husband and he said, essentially, "Yeah, I know, and that's how I explained it to Son."