So, this past week I was in Ottawa, at the Canadian Autism Spectrum Disorders Alliance Leadership Summit (as those of you who follow me on Twitter probably already know!). Unlike the previous two years (though I didn’t write any blog posts for the 2017 summit), I wasn’t speaking at a panel, but I still wanted to go for the contacts and to meet new autistic advocates (there were thirty-four who expressed interest this year, as CASDA received a grant specifically to invite those with first person lived experience, and they had keynote speakers each day with lived experience).
Now, I say that up front… because this isn’t the post about the summit. (That’s coming later.) This is about something else, that got raised in a panel and in talking to one of my close friends (Patricia) the first day of the summit (which happened to be April 2nd – yes, that’s on purpose).
Every year in April, since I first started learning about Light It Up Blue and Autism Speaks, I have consciously chosen to not wear blue (unless I’m going to be at home all day). I have encouraged friends and relatives to not wear blue on April 2nd (and preferably wear red or taupe instead). And that is my personal choice.
But at my friend Patricia’s panel at the summit on the 2nd, she read out a poem that she had written, after talking about the fact that really, there are a lot more important things to fight about than colour.
You do you,
Even if it's blue,
Even if it's green,
Go ahead & be seen.
Want to wear yellow?
Awesome, my fellow!
Or maybe red,
Feeling BOLD? Go gold
To make them go woah!
Embrace the Rainbow.
You do you.
She also told me that she’d had someone (another autistic) who came to her in tears because the only raincoat she had was blue. And the only swimsuit I have is blue, which I quite happily wore to go swimming at the hotel pool the nights of both the 2nd and 3rd.
This shaming of other autistics for wearing blue in April has to stop. I love blue; the only colour I love more than it is green. (Except if we’re talking colours of light – then I don’t like blue at all. But anyway.) I have more blue in my wardrobe than green.
My choice to avoid wearing blue in public in April (except if I go swimming, obviously) is a personal choice that I made because I wanted to make a stand (admittedly a subtle one) in that way.
But I’m hardly going to go up to other autistics wearing blue in April and go, “You shouldn’t be wearing that! That colour represents Autism Speaks and Light It Up Blue, and those are damaging to autistics!” Number one, I have no right to dictate what other people wear, no more right than I have to dictate what other people choose to do with their own bodies. (ABA and those protesting it, I’m looking at you.) Number two, what happens if:
- That particular piece of clothing is comfortable and/or soothing for them to wear?
- That is the only clean article of that type of clothing they have left before doing laundry?
- That is the only one of that type of clothing they have? (Like my swimsuit or the other person’s raincoat?)
- They aren’t the one who chooses what they wear? (This happens, for more than one reason. What if they have difficulty making choices? I do sometimes, though not usually with clothes, but that’s because I’ve worn my stuff enough that anything’s comfortable. And even then, I can need help when going to something a bit fancier than everyday life!)
- They don’t know (and don’t have the energy to deal with) the situation around Autism Speaks and LIUB? Burnout is a real thing, after all!
- They know, but have made the choice to protest in other ways?
- They have mostly blue clothing in their wardrobe, for whatever reasons? (Allergy to other dyes, blue is a soothing colour for them, blue is their favourite colour, tons of other reasons that I can’t think of at the moment?)
There are other reasons as well, those were just the ones that I could come up with off the top of my head (aka “while I was thinking about and then writing this”), so to speak.
Those of us fighting for a better life for all autistics, one where autism (and other neurodiverse “conditions”) is/are accepted as normal variations on human neurology, who do our best to communicate for those who (for whatever reasons) are unable to communicate in a way that’s accepted by society as normal… we have no more right than any other person to tell our neurosiblings how to behave and/or present themselves. We can encourage them (the way I encourage friends and relatives to #WearRedInstead for example), we can provide them with information about what our part of the autistic community thinks of things, etc. – but we cannot tell them what to do or what not to do.
If we are doing that, then we are no better than those we are fighting against. We are saying that because they are not “advocates” – or because they are do not agree with us on things – that we are better than them. This is Not Right.
The shaming of other autistics for their choices has to stop.