(I give permission for this post to be reposted on other websites or blogs so long as credit is given to Arielle Sallee and a link to Living By Starlight is given. Excerpts may be posted, but the post may not be edited.)
There. I said it. I love autism.
I doubt very many people will read this. The ones that do (my family, mostly) probably don't know about the things going on in the autism blogosphere and wider community lately. About "I hate autism" and the murders of George Hodgins and Daniel Corby by their mothers. So to sum up: a few weeks ago, there was something of a blow-up because some autism parenting blog said "I hate autism" and people got offended (naturally, I think), and battle lines were drawn between parents and self-advocates and...it sucked. It just all sucked.
I'm not explaining things very well. I'm upset right now. But the point is that somehow, it was okay to say "I hate autism" to some people.
George Hodgins and Daniel Corby? A man and a boy--the former 22, the latter 4--both killed by their mothers. Both autistic (I'm not 100% about Daniel). And in both cases, the media reporting sympathized with the mother. As if it was understandable to kill an autistic person. As if killing your own child is ever, ever, ever okay. It's not, and some people have said it more eloquently than I have. I will link to some posts at the bottom.
But I have this to say, to this culture of hate, to these parents that hate what their children are: I love autism. I. Love. Autism. I don't tolerate it. I don't put up with it. I love it. I wouldn't change it. It's hard and it's challenging but I don't care.
A metaphor, to explain:
I love being a woman. I love being feminine. I love that my body can incubate and birth and nurture life. I am a goddess-hippy-yay-woman-power person. (And I suddenly have "I've Got a Theory" from "Once More, With Feeling" stuck in my head. Dammit, Joss Whedon.) Anyway, I love being a woman. I wouldn't want to not be one.
And yet, it's hard to be a woman. There's times when the physiology of it sucks. Childbirth is hard, and there is sexism and discrimination and body image issues. It's not a picnic. And I don't think men inherently suck. I like men, and I'm sure many men like being men, and it's hard to be a man sometimes. It's just that being a woman, hard as it is, is part of who I am. I'm happy with it, despite all the troubles.
So:
I love autism. I love being autistic. I love that my son is autistic. I love that we look at the world differently. I love the sensory information I get, the way soft things feel, the way I can go into this trance-like state from music and color that I'm not sure most people can get without drugs. I love that some things, like math and writing stories, are so easy. I love that I can hyperfocus so much on a thing that I can know it inside and out in relatively little time. I love that my son has learned to read before he's talking. I love that I never feel lonely just because I'm alone. I love that my son and I both seem to see things other people don't, and I wonder if what he sees is anything like what I see. I love the insight my fellow autistics have on the world. I love being autistic. I wouldn't want to not be, or want my son not to be.
And yet, it's hard to be autistic. There's times when sensory overload happens. There's times when I miss social cues in the middle of "seeing other things." This happens a lot, actually. I'm still learning to deal with all of this. I live in a society that devalues me and my son in so many ways it's hard to count. I don't feel that it's okay to ask for the things I need to get along in a world that is so different than the one I experience. And to a lot of people, it isn't okay.
I like--and love--a lot of non-autistic people. I don't think being autistic is some special new stage of evolution. I know it's hard to be a person sometimes, period, even when you're good at the social world. But being autistic, hard as it is, is part of who I am. It's part of who my son is. I wouldn't change him, any more than I would change my three "neurotypical" children.
If anybody does read this besides my family, and they agree with me: stand up and say you love autism. Stand up and say this isn't an epidemic. This isn't a burden. This isn't a reason to hate someone or fear them or kill them. This is part of who you are, or who your child or loved one is. This is part of being human, part of the fantastic diversity of our species. And it's not just okay, it's not just tolerable. It's a good thing.
I am observing Autism Acceptance Month. So should you.
Autism Acceptance Day and Month:
The blog
The Facebook event
The posts I mentioned above:
Stop the Murders of Disabled People on Facebook
This is What You Get on Journeys With Autism (Rachel Cohen-Rottenberg)
My Autistic Son's Life: Not Less Valuable on BlogHer (Shannon Des Roches Rosa)
Acceptance and Murder on The Standard Review
Remembering George Hodgins on Illusion of Competence
There's a lot more but these stuck out. I apologize if I've improperly linked anyone.
Wednesday, April 4, 2012
Wednesday, March 14, 2012
Emotions are a Choice
Our car died on Monday. And by died, I mean dead, kicked the bucket, pushing up daisies. It is an ex-car. We didn't know it at the time--all we knew is that the engine had stopped and there was oil leaking, and Richard had to leave it on the side of the road and walk a mile or two home with my daughter--both of them sick. Sucky situation, all around.
Today we found out from the mechanic that it will cost $4,000 to fix the engine. This is an old car; for $4,000 we could get a better, newer car--if we had the money. Naturally, we don't, nor money, really, for any sort of car at all.Where we live there are no buses for several miles, and nothing within walking distance. Without a car, we're screwed. Well, maybe, but more on that in a moment.
I could have panicked on hearing this. There are things I like to do outside the house, and Richard needs to be able to go job-hunting, and so on. Being house-bound is just not a good thing, nor a desirable thing. I could have been angry at myself or Richard for not taking better care of the car. I could have gotten depressed over the situation, and at the universe for "doing this to me" when my compter had so recently broken down too.
I didn't do any of those things. And what makes this something worth pointing out is that I chose not to. I felt despair and anger and frustration creeping up and went "screw that, none of those emotions are useful. Go away, I have a problem to solve." The energy didn't go away--I just channeled it into solving the problem.
My solution is thus: bicycles. Two bikes, plus helmets, should cost us around $300 or so--maybe more, maybe less. They require no gas and far less maintenance than a car, and it'll get me moving physically, which I desperately need. It's not a permanent solution; when we have regular income, we'll probably get a car. But right now, bikes let us get to the bus stops, and give us a degree of freedom.
Yay solution! I felt better and the nasty energy dissipated, though not entirely. I've been having a general, unfocused anxiety and depression for a while now. Some crappy stuff has gone on lately, but often everything will be fine in the immediate, but I feel dread or sorrow for no reason. In the past I'd have found a reason for this, the reason I'm depressed or angry or whatever, but these days I go... I get depressed. It happens, it's brain chemistry. I need medication and a more active lifestyle, and definitely a better way to de-stress my neural system so I don't carry the weight of getting overwhelmed so much.
Which leads me, finally, to the point of writing this: I have come to view emotions as being, sometimes and to some degree, a thing that can be chosen. Sometimes one is so angry or happy or sad that it can't be denied--and often, in those moments, those are good and healthy responses. I don't say "I chose not to be angry" as if anger is always bad. Anger can give one fire and energy to fix a problem, to right a wrong. Sadness is warranted over loss and hardship. Etcetera.
But so much I hear people say they just feel this way and can't help it, or people want their emotions "validated" or some such--they want me (or whomever) to tell them it's okay to be angry, or happy, or sad. Or rather, that I (or whomever) approve of and support their emotions. Huh? Why? If your anger is justified, it's justified. If it's not, it isn't.
Here's the thing: just because a person feels an emotion in a situation, that doesn't mean that emotion is an appropriate and mature response to said situation. Hell, it may not even be an actual response to the situation. When I get depressed, I'm depressed, and I'm not going to be genuinely happy no matter what I do until the dark cloud passes. There are exceptions, but they don't make the cloud pass on their own. Bipolar folks who are in a manic phase might be happy about anything. And even mentally healthy people do this--they ruminate on the nasty driver who cut them off in traffic and then snap at someone later who did nothing to warrant being snapped at.
What I've learned (and there are studies to back me up, which I'd link if I remembered where I found them) is that deciding "I am going to feel this way" and then acting as though I feel that way does work, to a degree. Like I said, if I'm depressed happiness is elusive, but the more I act happy and productive, the more I get done, and the more I start to feel happy and productive. Then I start doing things that fight depression--getting my diet and meds in order, getting exercise, getting my living space clean, etc.--and then acting happier and productive is easier, so I get happier and more productive and... etc. I've just learned that I have to fake it for a while. I have to look at that unfocused "blah life sucks" and go "no, it doesn't, and I'm going to act otherwise, thanks much."
The unfocused blah isn't going to go away at first. I am going to have moments of feeling awful, moments of feeling tired and worn and overwhelmed. I allow myself to crawl into a blanket and rest, but I treat it like I'm sick, not like the world is awful and life will never get better. That way lies emotional states I swore I would never re-visit. And sometimes, anger or anxious energy can be useful when I can harness them into energy for making things better.
I'm hardly perfect at this, and it's only been very recently that I've really started to believe that I can choose my emotional states. To diverge in a geeky way for a moment: I think going back to Star Trek (I'm playing ST Online and Richard and I are watching TNG on Netflix) has reminded me of how much I've long admired Vulcans. I don't think I'd want to suppress all emotion--I like passion, and anger can be useful, and so on. But trying to step back from emotion, think logically--to recognize that our passions and whims and brain chemistry need not rule us--is a good and useful thing, I think. It is also what I think a lot of "choose to spread kindness" homilies are trying to say--that you can choose to be happy instead of angry, and to spread joy instead of sorrow.
I don't know if I'd go so far as to start spouting homilies. Sometimes, a "negative" emotion is the right one to choose. Sometimes, the world sucks and its ass needs some kicking. Sometimes, the world sucks and you just need to cry. All of that's okay. I guess what I'm saying is that I'm glad I figured out that I can think my way up out of depression, and that I hope anyone that knows me that reads this understands if I maybe don't always seem sympathetic to whatever emotional state is passing through their mind right then. There is one sort-of homily I can support here: what matters is not so much your situation, but how you choose to respond to it.
Today we found out from the mechanic that it will cost $4,000 to fix the engine. This is an old car; for $4,000 we could get a better, newer car--if we had the money. Naturally, we don't, nor money, really, for any sort of car at all.Where we live there are no buses for several miles, and nothing within walking distance. Without a car, we're screwed. Well, maybe, but more on that in a moment.
I could have panicked on hearing this. There are things I like to do outside the house, and Richard needs to be able to go job-hunting, and so on. Being house-bound is just not a good thing, nor a desirable thing. I could have been angry at myself or Richard for not taking better care of the car. I could have gotten depressed over the situation, and at the universe for "doing this to me" when my compter had so recently broken down too.
I didn't do any of those things. And what makes this something worth pointing out is that I chose not to. I felt despair and anger and frustration creeping up and went "screw that, none of those emotions are useful. Go away, I have a problem to solve." The energy didn't go away--I just channeled it into solving the problem.
My solution is thus: bicycles. Two bikes, plus helmets, should cost us around $300 or so--maybe more, maybe less. They require no gas and far less maintenance than a car, and it'll get me moving physically, which I desperately need. It's not a permanent solution; when we have regular income, we'll probably get a car. But right now, bikes let us get to the bus stops, and give us a degree of freedom.
Yay solution! I felt better and the nasty energy dissipated, though not entirely. I've been having a general, unfocused anxiety and depression for a while now. Some crappy stuff has gone on lately, but often everything will be fine in the immediate, but I feel dread or sorrow for no reason. In the past I'd have found a reason for this, the reason I'm depressed or angry or whatever, but these days I go... I get depressed. It happens, it's brain chemistry. I need medication and a more active lifestyle, and definitely a better way to de-stress my neural system so I don't carry the weight of getting overwhelmed so much.
Which leads me, finally, to the point of writing this: I have come to view emotions as being, sometimes and to some degree, a thing that can be chosen. Sometimes one is so angry or happy or sad that it can't be denied--and often, in those moments, those are good and healthy responses. I don't say "I chose not to be angry" as if anger is always bad. Anger can give one fire and energy to fix a problem, to right a wrong. Sadness is warranted over loss and hardship. Etcetera.
But so much I hear people say they just feel this way and can't help it, or people want their emotions "validated" or some such--they want me (or whomever) to tell them it's okay to be angry, or happy, or sad. Or rather, that I (or whomever) approve of and support their emotions. Huh? Why? If your anger is justified, it's justified. If it's not, it isn't.
Here's the thing: just because a person feels an emotion in a situation, that doesn't mean that emotion is an appropriate and mature response to said situation. Hell, it may not even be an actual response to the situation. When I get depressed, I'm depressed, and I'm not going to be genuinely happy no matter what I do until the dark cloud passes. There are exceptions, but they don't make the cloud pass on their own. Bipolar folks who are in a manic phase might be happy about anything. And even mentally healthy people do this--they ruminate on the nasty driver who cut them off in traffic and then snap at someone later who did nothing to warrant being snapped at.
What I've learned (and there are studies to back me up, which I'd link if I remembered where I found them) is that deciding "I am going to feel this way" and then acting as though I feel that way does work, to a degree. Like I said, if I'm depressed happiness is elusive, but the more I act happy and productive, the more I get done, and the more I start to feel happy and productive. Then I start doing things that fight depression--getting my diet and meds in order, getting exercise, getting my living space clean, etc.--and then acting happier and productive is easier, so I get happier and more productive and... etc. I've just learned that I have to fake it for a while. I have to look at that unfocused "blah life sucks" and go "no, it doesn't, and I'm going to act otherwise, thanks much."
The unfocused blah isn't going to go away at first. I am going to have moments of feeling awful, moments of feeling tired and worn and overwhelmed. I allow myself to crawl into a blanket and rest, but I treat it like I'm sick, not like the world is awful and life will never get better. That way lies emotional states I swore I would never re-visit. And sometimes, anger or anxious energy can be useful when I can harness them into energy for making things better.
I'm hardly perfect at this, and it's only been very recently that I've really started to believe that I can choose my emotional states. To diverge in a geeky way for a moment: I think going back to Star Trek (I'm playing ST Online and Richard and I are watching TNG on Netflix) has reminded me of how much I've long admired Vulcans. I don't think I'd want to suppress all emotion--I like passion, and anger can be useful, and so on. But trying to step back from emotion, think logically--to recognize that our passions and whims and brain chemistry need not rule us--is a good and useful thing, I think. It is also what I think a lot of "choose to spread kindness" homilies are trying to say--that you can choose to be happy instead of angry, and to spread joy instead of sorrow.
I don't know if I'd go so far as to start spouting homilies. Sometimes, a "negative" emotion is the right one to choose. Sometimes, the world sucks and its ass needs some kicking. Sometimes, the world sucks and you just need to cry. All of that's okay. I guess what I'm saying is that I'm glad I figured out that I can think my way up out of depression, and that I hope anyone that knows me that reads this understands if I maybe don't always seem sympathetic to whatever emotional state is passing through their mind right then. There is one sort-of homily I can support here: what matters is not so much your situation, but how you choose to respond to it.
Tuesday, February 21, 2012
Difficult Admissions
It's been a while. My life has turned inside-out and upside-down, and I'm not sure of what I want to do or be anymore. But the blog title still fits, so I keep it.
I realized today while writing a Facebook post that I need this. I need to sit down, at least once a week, and type these things out. I am going to. And maybe post the link some places and see if anyone else cares to read. Maybe read and comment on other blogs. I don't know... something.
Anyhow, I've been hiding from the world--even the online world--because I'm ashamed, and I shouldn't be. Below is the Facebook post I wrote in which I realized this.
(Begin Facebook post)
I realized today while writing a Facebook post that I need this. I need to sit down, at least once a week, and type these things out. I am going to. And maybe post the link some places and see if anyone else cares to read. Maybe read and comment on other blogs. I don't know... something.
Anyhow, I've been hiding from the world--even the online world--because I'm ashamed, and I shouldn't be. Below is the Facebook post I wrote in which I realized this.
(Begin Facebook post)
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