Monday, December 5, 2016

Deep Thoughts on Safety Pins

Today I saw my therapist for the first time since the election. I didn't really feel much like talking, so we did bodywork designed to help me feel supported and contained.

At one point I got hysterical thinking about my son, and how he's regarded by the people now in power here. And my therapist helped me through with a loving-kindness meditation, emphasizing the safety of my space and connecting it to a matrix of the many other people who are frightened right now, and how we need to help each other feel safe.

Wow, this shit is hard to describe. Anyway, I felt like I'd been giving a missing piece. (I first mis-typed 'peace', a truly subconscious typo.) I'm doing as much activism as I can. My family is giving money, making phone calls, joining action groups. But support for the emotional aspects of living in this time is important too.

And I remembered the poor "safe space" safety pin. I wore one for two days, before it was inevitably ruined and perverted by sabotage from the right and disgusting expensive jewelry versions. And... by anger from people I consider friends online.

And I don't want to blame or shame anyone for their anger. But I can't help feeling that anyone who said "the safety pin does nothing, it's only actions that matter" missed the point. Of course actions matter. They're vital, especially now. But feelings also matter. The safety pin was a way for me to express, "I'm frightened. I'm sad. If you're frightened and sad too, we're together in this. Let's help each other."

It really hurt me that people were so angry at me for making an effort to have that in my life. And I closed off. So I''m glad to be reminded that it's important to connect. It's important to feel for each other.

Tuesday, November 1, 2016

How Empathy Works for Me

Yesterday I read this in the Washington Post:

(Warning for the usual sort of non-thinking, inherently-ableist reporting.)

To summarize the story, Chase, a black, mostly non-verbal autistic teen, was assaulted by a much larger white man while running a marathon with his team. His family is having difficulty getting justice for him.

Sadly, this is a fairly common sort of story in America. And I felt the usual feelings about it. Outrage and disgust at the obvious racism that provoked the attack. Outrage and disgust that justice wasn't being served. A cynical relief that at least the poor boy wasn't shot, as so many black and/or disabled people have been.

And then I got to the rest of the story.

Chase has refused to run since this happened. It was formerly his favorite thing. It brought him joy, and a place in a community.

That's when I started to cry. Because I know this. I know what it's like to have nasty people ruin something you love. Sometimes it feels like that's my whole life now. Just one big reaction to trauma.

So I cried more for Chase than I have for people who've actually been killed. Because I know what he's going through.

I was remembering something that happened after 9/11. I was 8 months pregnant when it happened, and I posted somewhere online about how upset I was for the women who were near term or in labor in New York -- how terrifying it must be in the midst of all the chaos and loss of essential services and such. And I got a response so sarcastic I could barely parse it, but I think the message was it was disgusting that I was thinking about that instead of the loss of lives.

Well, the two aren't mutually exclusive. Of course I was horrified and saddened for the people who died, and the people who lost loved ones. (We didn't know for awhile about the people sickened by the smoke inhalation.) I felt a great deal of sympathy for them. But my most immediate empathy went to the people who were experiencing something like I was experiencing.

Similarly, when Katrina happened while I was the mother of a young child, my thoughts were largely with other mothers. I gave money for diapers for the refugees, as well as for drinking water.

Is this weird? Or bad? Or is it unreasonable of people to expect true empathy for everyone in every situation? How much can anyone stand to empathize when there's so much suffering in the world?

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.