A couple of months back, I was sent an email asking whether I wanted a free copy of Steve Silberman's NeuroTribes. Being something of a book hoarder, I really couldn't refuse. I've been looking forward to reading this book since I've heard of it coming out, and offered to write a review. So, for the sake of transparency, all I've gotten out of this is a free book and a voluntary obligation to write a review.Cause I want to talk about this book. I really want to talk about this book. This book deserves to be talked about.I got my copy, oh, a week or so back, I think. Early August. (Yeah, I'm bad on time) It took me some time to work up the nerve to open it, and then it took me longer than I expected to read it. It is a subtly and surprisingly packed narrative written in and around various mini-biographies, following a single thread throughout history: the diagnosis of Autism as we know it. I feel like there was a lot of material that Silberman has been working through, and chose his words with care to say the most, to show instead of tell. It is a rich weaving of history, some of it painful and dark, and does not shy away from that. Some of this I knew about beforehand, as part of my own experiences researching and being a part of Autism history, and some of it I could only guess. I know that for those who are not prepared, it can be very disturbing. Even prepared, the stories shared in NeuroTribes can be disturbing. Silberman covers a lot in the pages, including treatments used on us, the theories prescribed about us, and how there is this fight to recognize autistic people, all autistic people, as autistic. Complete with how such things like a diagnosis impacts individuals, and a glimpse into the beginnings of autistic culture, both before and after the advent of the Internet.But this is our history. And this is probably not the last book on Autism history, but is only a part of our past. No, as I'm sure many of my community will agree with me, it is not complete. This is a slice of where we've been, condensed into a nearly 500-page book (the epilogue ends at page 477). That couldn't have been easy. Especially since I know there is a lot more material that Silberman has from writing NeuroTribes, waiting to written and shared with the world.Most importantly, there are parts that I didn't know about, new information about our history, indications and answers to that ever so annoying question "where are the autistic adults?" As Silberman shows, we have always been here, in the past, in the present, and in the future. After all, some of those incomplete chapters, aren't we still writing those?Let's go make the next volume of Autism history!
Recently, I've started to cut my hair. Doesn't sound all that impressive, does it? Well, at first it was just trimming the back of my neck, doing my own bangs, you know, little touch ups here and there. The bangs thing was fairly regular enough that I bought my own pair of sheers because I found that hair dressers, no matter how nice, and they make awesome efforts at this, never quite get what I'm trying to describe how I want my hair. And repeat visits, yeah, it might try to clear up what I want, but it's expensive, both in terms of money, time, and social resources. So I took matters into my own hands. Some of the results were more successful than others; I'm not exactly trained at this. But I got a bunch of good feedback from numerous sources, including people who generally I expect them not to give an opinion either way, and friends who give honest feedback. I figure, the only way to get better at something is to practice, so I continued on. And then I got the idea to cut my hair not only really short, but shave it. For a number of different reasons, ranging from comfort while I sleep with my CPAP, to cosplay dedication, to why the heck not?I thought about it for a while, even looked up shaving techniques and shaving for cancer fundraising campaigns. I even tried talking to my parents about it. Their response was... mixed. "Oh, you don't want to shave. Go to [hairdresser] and get it cut short." It felt really uncomfortable to talk about this to them, and I walked away from it trying to figure out why. Why is shaving one's head such a thing? I asked myself this and started getting the itch to cut more. Not self-harm cut. Since I was a kid, when I was angry or upset, or maybe even just frustrated, I'd cut things. My mom's lunch bag, my brother's shirt, I'd even grab chunks of my hair and cut. When I did that to my hair, Mom would whisk me away to the hairdresser to get it "fixed". Even with limited access to safety scissors, I went to the hairdresser a lot. I think it speaks a lot about how my mom views my decisions about my hair that years later, it took a family counsellor to convince her that as an adult, I don't need her permission to dye my hair and the remarks she'd say were very inappropriate, not to mention hurtful. I thought about that as I started cutting my hair the shortest it's ever been. As I cut, I also posted pictures on my Facbook to document my transition. The pictures of my hair like this, got comments about it being art. Which I suppose is a way of looking at it I haven't considered. But the more I think about it, the more I like the idea of my photographs as an art. After all, it's documenting my journey, and various learning about cutting one's own hair, towards self-expression. I don't really see it as any different than when I compose and post images of my medications for the day, my dermatillomania scars, my migraine updates; I see it as sharing not only who I am, but my life and what I go through, and how I share, with friends, family, and yes, the public. As long as I am willing, and I control the lens, I don't see the problem with it. Except that art can be political and/or a form of activism. I live in a situation where I can express myself through art freely, not only in my country, but also in terms of my personal intersectionality. I am a white woman, most of the time seemingly abled in public, who maintains privilege from a middle-class background, including my wardrobe. Two things come to mind when I'm cutting my hair. One, I think about how a lot of the questions I get when meeting casual acquaintances is centered on "why"; they want to know why I cut my hair in such a style. The most negative comments (from family, I might add) expresses concern that I'll be judged badly, or that I'll regret it (it's hair, it'll grow back), or that it'll be ugly. I usually don't care about physical appearances too much, but I can't help but think that their concerns and negative attitudes is based on a rather limited view of beauty. And an ugly view on society too. So far, I've yet to be treated badly for my hair. Could it be that people see my hair as only a small apart of my appearance? There is the possibility that people have made assumptions about my lack of hair and my health, or that my various intersections of privilege has shielded me. But why can't this be beauty? Second, I think about how many possible ways in my country where someone like me not be able to cut their own hair, in the way that they want. For self-expression of their gender, or beauty ideals, or just to style their hair their way! In a different situation, it might be difficult for someone to style their hair because they live in an environment where they have no control over those decisions, whether by relatives or care staff, coercively or outright deciding for them. Or they must appease the people they live with, living in at least a faintly toxic environment or situation. Or it's just not safe for them to do so. I think about how in activism, we push for things like body autonomy, freedom of choice, freedom of expression; how much can be taken for granted with being able to cut and style one's hair? With both thoughts, the act of hair cutting becomes a rebellion, a defiance. To go against perceived notions of physical beauty, to redefine beauty, but also acting for one's own body autonomy. The freedom of the self.
Autistics Speaking Day 2014
Originally posted on the Autistics Speaking Day blogI know I'm late running for ASDay 2014, but I have most things in order!For one, the submission form is now open and ready to take submissions. And the Facebook event page is online.And as always, I do advise people to review our FAQs and our Content Filter List.I know it's only about a week until Nov 1st, but let's have a great day!!