51. From Cliches to Community

“From Cliches to Community”

Since almost every article this month about autism begins this way, why not take a drive on Trite Avenue:

APRIL IS AUTISM AWARENESS MONTH! I couldn’t resist. 😉

There are ups and downs to having these awareness movements, as we all know. If it means that empathetic people don’t mind having it reiterated what it means to be accepting, inclusive and informed, and then go on to retain that feeling of empathy through the year, that’s cool. I can get behind that, and am happy that our family was part of an inclusive dance performance last weekend. A didn’t really feel the vibe, and was happy to go home after his group went on, but the whole show was stupendous, and we were all choked up at how supportive our South Asian community truly can be.

What does it mean to be aware all year? How many causes can we really expect people to carry year-round empathy for? People do get fatigued by all this heart-on-sleeve stuff, I can perceive that without getting upset about it. And if I ask myself–do I need awareness months in order to understand other causes?–I would say no, not really, but probably bytes of info do percolate down to me in ways that come in useful when I encounter someone who embodies that cause. No one will ever forget the ice bucket challenge, for example.

The form matters. I don’t enjoy being bombarded with weepy videos filled with vignettes and catch phrases and soulful piano music. Please don’t inflict anymore of those on me, I’m begging any relevant someones who might read this. I know they have an impact on some level, I really do, but can we have a new format? Just throwing that thought out into the video-making void. If autism self advocates feel differently, I understand. I don’t enjoy the videos because they elicit an easy, immediate emotional response, and I really question whether they further an intelligent discussion.

The message also matters. There are a lot of us who are over the idea that autism is some sort of scourge, and that people’s autism behaviors are always indicative of suffering or entrapment. Personally, I want society to make room for the tics and the quirks and the noises, and I want to see our kids free to express rather than suppress themselves. Our beloved children are their own ambassadors–they need make no apologies, and they need meaningful inclusion, not abstract tolerance. They need disability laws that won’t let them down right at the moment they are most needed. They need equal access to education, services, and public life, without having to humiliate themselves for it. And they need accommodations without any accompanying prejudice that somehow, accommodations equal privileged treatment.

And love matters. I am so grateful to my friends and family, and all the silent strangers who have been willingly reading my blog all these months. My award for autism awareness goes to people like you, who are happy to see the world as we do for a short time each week–I am in awe of those of you who have taken the time to tell me that your understanding has been enhanced. And to those of you who have jumped fearlessly into the world of inclusion. And to those of you who have reached your hands out in real life friendship to my family. My world has grown so much because of you all. It hasn’t been easy to keep up even this moderate level of writing in a life that is so filled with practical minutiae, but I always come back to it somehow because it is rewarding for its own sake–combining a love of words with many years of walking the path of advocacy has changed me for the better–and it is rewarding because you all share this space with me.

Our little family prefers a relatively quiet life, and we engage with the world in ways that won’t drain our reserves. Even so, I have been entirely charmed and enriched by the acceptance, and dare I say it, awareness, that I have seen unfolding around us. It helps us tune out the sometimes brutal, sometimes insensitive, sometimes well meant but hurtful reactions we garner by taking A out in the world. Perhaps that’s the best we can do sometimes, and that’s good enough.

Radha.

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