The art world is Social

The wonderful Sonia Boué talking about the ableism on show in an article written for disabled artists.

This also applies to any other (not) “helpful” advice about how skillful networking/schmoozing is the only way to get anything done. And when I grow gills, I’ll be a big hit with all the cool fish.

Bundlejoy Cosysweet

Why Bundlejoy Cosysweet?

It’s aspirational, really. She appears in a couple of kids’ books by Russell Hoban, who is also responsible for, among others, the cuddly kiddie classic, Bread and Jam for Frances, and the mind blowing, post-apocalyptic, and completely not for kids sci-fi novel Riddley Walker.

Aunt Bundlejoy first appears in How Tom Beat Captain Najork and his Hired Sportsmen, where she takes in young, happy-go-lucky Tom, freeing him from his grumpy aunt, Fidget Wonkham-Strong, who feeds him nasty food and has a dim view of “fooling around,” and her new beau, the unhealthily competetive Captain Najork, who challenges Tom to a series of bizarre contests in which victory relies heavily on certain “fooling around” kinds of skills. She is also in the book’s equally bonkers sequel, A Near Thing for Captain Najork, in which she and Tom travel across the countryside in a flying “jam-powered frog” which lands prematurely when the jam runs out, causing more run-ins with Najork and Wonkham-Strong, who lives up to her name. If you ever find yourself reading out loud to kids, these books are highly worth seeking out.

Bundlejoy is never anything but sweetness and light, depicted sipping a glass of white wine with a winsome smile. I’d love to be like her, a safe haven for my kiddo, who much resembles Tom, in his facility for both rejecting whatever food he’s given, and in fooling around. Unfortunately, I’m afraid I’m more than a little Wonkham-Strongish. I fail to maintain, um, a certain gentleness of affect when faced with resistance and chaos. I adore kiddo, but multiple battles of wills leave me wanting to brain him.

Aunt Fidget reminds me strongly of my grandmother, who I remember as short, wiry and well-coiffed, (she lacked an actual iron hat, like Aunt Fidget’s), always in pastel polyester slacks and twin set, a Newport smoldering between Florida-brown fingers gnarled with arthritis, her mouth a grim line of coral lipstick. She liked things orderly. I’m sure she must have smiled sometimes, but in my memory, she just smokes and judges. She never liked me, I don’t think, notwithstanding the loving family rhetoric she insisted on. I was conceived when my mom was in college and my parents married soon after that, and somewhere, deep down, I got the impression that it was baby me’s fault that my mother, always tops in her classes, had to take a year off of school and never became a doctor.

Aunt Fidget Wonkham-Strong

In retrospect, I think she must have been autistic too, before such a thing was conceived of, interpreted as just a series of oddnesses, like the ritualized way she’d talk on the phone:

(I answer phone)
Grandma: ” Hello. How’s everything?”

Me: …

Grandma: “That’s good.”

Often that response would come before I’d had a chance to reply how everything actually was.

I’m sure there were more signs, the way she didn’t really like to be touched, that there was never the sense of warmth that you got from other people’s moms and grandmothers, that everything had to be just so. And the smoking. For decades. A socially acceptable stim.

She died at 83, having wasted away with cancer and dementia over the course of a couple of years, and my mother cared for her at home during her last months. When the end was near, I got calls to come say goodbye, but I didn’t go to Florida until the funeral. Grandma had already been gone for a long time, and had never seemed that happy to see me before then.

My mother is almost certainly on the spectrum as well, with a sort of intensity of absence, and a tendency to panic when things are unplanned. It’s sometimes hard to get her attention, even when you’re in the same room. She’s not icy like Grandma, but often seems tepid, indifferent, distracted.

Other times, my mom is a fucking superhero, with a laser-eyed focus on getting shit done, taking care of things. After providing hospice care for Grandma, she did the same for another friend, who died at her home, safe in bed, and then was the executor of her will. She helped me whip my fixer upper house into shape in a matter of weeks. With the help of my stepdad, she has taken in my cousin’s at-risk teenager because he was withering at home, turning around his academic performance and behavior.

Mom isn’t cuddly, but she shows love with her actions.

I have inherited the non-cuddly legacy of both of these formidable women. Most of my energy goes into building my own personal sanctuary, and it’s hard for me to find space in my home and heart when it feels like I’m inviting in disorder and dischord. An argumentive tone makes me want to flee. It’s been a long time since I felt safe, and I’m not there yet.

So as a parent, I often feel ineffectual. I want this to be a sanctuary for kiddo, too, but at fifteen and three quarters, it’s hard for me to tell what is going on with him, other than he will respond to most direct requests, no matter how minor, with either argument or complaint. Every once in awhile, I manage to strike the correct tone of voice to get my message across, but it often feels like a crapshoot. He needs me to be both aunts right now, to be loving and to set firm boundaries, and it feels like I am maybe capable of doing one or the other, but a lot of the time, I have trouble achieving the right balance between the two.

Kiddo fools around too much, but a lot of that fooling around is useful, like educational YouTube videos on 3d rendering and computer repair, but at the expense of actual homework and going to bed before 3 am. It’s a battle to get him to understand that eating and sleeping enough really do affect your mood and concentration, and he isn’t just “like this,” meaning irratible, distracted and constantly exhausted. Bundlejoy just wants him to be happy, but she needs Fidget to read him the fucking riot act.

I’m told that love multiplies if you give it away, but have no personal evidence that this works for me. I want to know how to make this happen, to become a safe haven for anyone but myself, to radiate sweetness and light, to be stern but giving, fair but fun.

So Aunt Fidget scowls from under her iron hat, which I’m sure is great for keeping her head safe, and Aunt Bundlejoy is all smiles and acceptance, long hair, floppy hat, and drives a fucking flying frog. I guess I’ll just pass the jam.

A thousand tiny cuts

The fantastic Laina quotes from an USA Today article on microaggressions:

 “the constant and continuing reality of slights, insults, invalidations and indignities”.

Today I spent way more time than I wanted in my boss’s office explaining that I’d been busting my ass trying to get work done for him, but no matter how hard I tried, it seemed like I never produced what he wanted. I’d taken to a project to what appeared to be a dead end, documented said dead end (you can’t run five vms that need 8 gigs of memory each when you only have 16 gigs total to use, including the memory needed to run the host), and tried to spend the subsequent time learning something useful.The whole exercise seemed to me like trying to build a race car out of rubber bands, and destined to fail.

Apparently, and unbeknownst to autistic, literal me, they had expected me to pursue other angles that involved pulling in members of other departments, filing requests for stuff that I’d already filed similar requests about, somehow recruiting higher-ups into delivering stuff I couldn’t deliver myself. Despite the fact that every time I ask for something (specifically, in WRITING) they give me something different. It’s kind of a fraught sexist environment, I’m autistic and female. I’m always going to do it wrong.


To me, my job seems like an endless game of Calvinball. And this is of course my fault.

I don’t remember how I came across the term “microaggression”, but apparently I did, and I’m guessing that it was a post on Facebook or Twitter made by someone who is on the Asperger’s/autism spectrum. I can’t recall if it was posted specifically in reference to Asperger’s/autism, but I do know that as I researched […]

via Asperger’s / autism and microaggression  — the silent wave

So much this.

finallyknowingme has captured an experience I’ve been having for ages. I used to think inconsistent levels of competence was some sort of personal failing, but it’s just part of our way of being.  We need to allow for it, not beat ourselves up over it.

The undamped pendulum mentioned in Uncomfortable continues to swing. My life continues to feel like it has some way to go before it settles into whatever my new “normal” becomes. I don’t imagine, for one moment, that I shall ever achieve the stability that many people seem to in their lives – I’m just not […]

via Oscillating — Finally Knowing Me: An Autistic Life

“What are eyes for, anyway?”

residentsThis essay, “On having no head” (here’s the whole thing), blew my mind when I first read it as a teenager, as part of a collection called The Mind’s I. Essentially, it’s an elaborate discussion of how you can never look directly at your own eyeball.   D. E. Harding writes:

… a picture of me-with-a-head is no likeness at all, it is the portrait of a complete stranger, a case of mistaken identity.

In response, Douglas Hofstadter, one of the compilers of the collection, talks about how we are able to figure out that we are, ourselves, human (and mortal, which is supposed to be the scary part), because we must, to some degree, resemble all the humans we can actually see:

…people are by far the best at the piling up of new category upon new category. This capacity is at the core of human nature and is a profound source of joy.

After 46 years of not recognizing myself, it’s going to take me some time to find this joy.  For now, clarity will have to do — a category:  Autistic.  An explanation. What’s happened is not just a series of arbitrary and self-inflicted shitstorms — those shitstorms now have context.

Late diagnosis, grief, adjustment, shock, relief, layers and layers of unwrapping and reframing. Mirrors facing one another at an angle, creating twisting images of the same shrinking figure, further and further away, me still bending this way and that, trying to get a better look, always obscuring the complete view.  Mirrors are no good. I still can’t see myself.

But I can see you.

And so, to all of the thoughtful, articulate, creative people who’ve shared and continue to share their stories: I’m so glad to know you’re out there. Thank you.

I’m not sure what I have to add to this conversation.  I have the reflexive habit of remaining on the outside of the circle quietly watching, never knowing the right time to join in.