Remember when we all changed our profile pictures to ribbons, and it cured cancer?
No, me neither.
The phrase “raising awareness” gets banded around on the internet a lot these days. It’s an extremely well-known idea and if you find the right cause, half the world can jump on board. It can even be as simple as taking the right selfie or pouring water over your head.
On the one hand, such online crazes can make enormous changes to much-needed causes. On the other hand, it can actually be damaging. Let’s briefly look at both sides.
The good side of “raising awareness” online
- The internet gives regular people, affected by irregular and/or hurtful conditions, an opportunity to have their voices heard by the whole world. It’s something mankind has never had before.
- When we see something that we feel the need to rally around, the effect can be enormous. A rare disorder can enter the realm of public knowledge. Bone marrow donors can be found. A lonely person can realise they’re not alone.
- The Ice Bucket Challenge campaign raised $115,000,000 for the ALS Association, and the scientific progress it funded was revolutionary. (All links open in new windows.)
The bad side of “raising awareness” online
- With autism, there’s a risk that awareness only gets raised about the stereotypes. Sam the Dancing Barista was a wonderful story, but it gave many people the impression that autistic people “aren’t supposed” to get enjoyable jobs. The beautiful video of a young boy crying at a Coldplay concert gave many people the impression that autistic children “aren’t supposed” to have strong feelings towards beautiful things. For that reason, I’m very careful about sharing these viral stories on Autistic Not Weird’s Facebook page.
- Some people may be a lot less likely to walk down to their local charity shop and donate if they’ve already “done their bit” by wearing no make-up for a selfie.
- The repeated use of the phrase “raising awareness” gets boring after a while, and people lose interest (see below).
So, what is awareness? Really, I mean?
Sadly, to many of us, it seems like the word “awareness” is being cheapened. In my opinion, it’s in danger of becoming a cliché.
It’s very much like how (in Britain at least), everyone got tired of the phrase “health and safety”. So many organisations have blamed “health and safety” for reasons why they couldn’t do things that, during the peak of public discontent, the Health and Safety Executive actually launched a Myth of the Month page to dispel false rumours. Even today, you sometimes hear people saying “we can’t do that anymore. ‘Health and safety’, apparently” with clear disdain in their voice.
And that’s a dangerous thing. Think about it: health and safety is literally the most important part of any job! With the exception of safeguarding of course, if you work with vulnerable people.
(On that note, for a long time in teaching I saw so many child protection-related restrictions to daily tasks – some of which were interpreted as obstacles rather than anything helpful – that I was genuinely worried that people would start rolling their eyes at the phrase “child protection” for exactly the same reason. And that would truly be dangerous.)
Actual awareness-raising is so important that we cannot afford to let it become a cliché. We can’t afford for people to roll their eyes at the mention of raising autism awareness. But I’m ashamed to admit, this is often exactly what I do when I see someone copy-pasting a status saying “97% of people won’t repost this as their status to raise awareness of cancer”.
Because in all fairness, everyone is ‘aware’ of cancer. Nobody is reading these posts and asking “oh, cancer? What’s that?” They may not be aware of how it affects the lives of cancer sufferers and their families, of course. But if you want to genuinely improve those people’s lives, you’re going to need more than a copy-pasted status.
For those who truly want to raise awareness, I ask you to please, please read this sentence and remember it:
If the awareness has no impact outside of the internet, it has no impact at all.
On first impressions, that may sound like I’m saying online awareness raising is fruitless. But that’s not what I mean at all. The internet has been an essential tool in bringing so many of us together. The trouble comes when all this awareness-raising is seen on a computer screen, but forgotten about when the user logs off.
After all, what’s the point in someone claiming they’re “autism aware” if they’re still staring at the ‘badly behaved’ kid in the restaurant? And if someone gives a judgey-face to a child having a meltdown in a supermarket, are the parents likely to care what colour that person’s profile picture is?
Some years ago, we all changed our pictures to our favourite cartoon characters. Mine was Tails from Sonic the Hedgehog, pictures above. (Seriously, he’s a two-tailed flying fox who destroys bad guy robots! How awesome is that?) The point in this craze was to “raise awareness” of children who were being abused.
And despite the lovely gesture, not a single abused child was helped. Children’s charities didn’t get much in the way of donations either, since that wasn’t part of the craze.
But that was ok, because we all had funny profile pictures.
And of course, let’s not forget the ‘awareness wars’ that go on in the autism community too. For every group of people putting jigsaw puzzle pieces in their profile pictures, there are others in the autism community protesting against the use of the puzzle piece – as they don’t believe it deserves to be the symbol that represents autistic people. There are good reasons, to be fair, but it shows how difficult it is to raise awareness of a subject that represents such a huge group of people.
Every World Autism Awareness Day (April 2nd), my newsfeed is full of people lighting it up blue for Autism Speaks. Those people genuinely believe they’re lighting it up for autistic people, but many in the community believe that the movement is simply about promoting Autism Speaks. At the same time, my newsfeed is filled with people wanting me to light it up gold, or light it up silver, or even red with the hashtag #redinstead, in order to mimic the Autism Speaks awareness movement without supporting the organisation.
As for me? I stayed off the internet on April 2nd. It was my Aspie godson’s birthday by total coincidence, so I spent the day in the real world with him. We ate ice cream, went bowling, and had an enormous burping contest in the car (which I won. Sorry Morgan. :P). So I guess I was contributing to the life of an autistic child on World Autism Awareness Day.
Because of the above, I almost don’t feel comfortable using the phrase “raising awareness” in relation to Autistic Not Weird. I much prefer the term “education”. Because that’s what it should be. So, for this article, I’m taking back the phrase “raising awareness”, and using it to mean what it should have meant all along.
So how DO we raise actual autism awareness?
Well, I have three thoughts to offer you.
1. Have us in plain sight!
Autistic people and their families still have to endure those who say “back in my day we didn’t have autism,” or those who even suggest that a diagnosis is just used as a bad behaviour license. (Of course, they’re revealing much more about their own ignorance than about autism, but it still hurts to hear.)
One man I know from my chess club was shocked and appalled when I told him the nonverbal students at my special school didn’t call me “Mr Bonnello”. Some of us even get family members seeing autism in a similar negative light (here’s an article I wrote on how to deal with that, by the way).
With all that said, it’s not always an ignorance issue. Often it’s simply a matter of being uninformed rather than ignorant. And the difference is motivation: plenty of people who don’t know about autism would happily learn about it, so I think it’s unfair to call them ‘ignorant’ just because haven’t had the opportunity to learn yet.
So why not offer them real-life experience of real-life autistic people?
When I worked in special education, we took our class of three teenagers into town once a week to eat at a restaurant. Partly to show them the world outside of their home and their school, and partly for lessons in life skills. One side effect of this was that the general public got to see severely autistic people in real life. We actually got far fewer stares than I thought we would, and even though we didn’t engage with these people in conversation, it at least made a statement that autism isn’t just something you see on the internet. Autistic people are real. And the days of hiding them away from the public eye are gone. Now it’s time to start actually providing for them.
This is difficult (perhaps even impossible) for many families, of course. And I’m not expecting all my readers to say “oh wow, great idea! Let’s jump in the car and go to the nearest restaurant right now!”
My point is that, as the saying goes, there’s no substitute for experience. Putting a rainbow jigsaw puzzle piece in your profile picture may remind your friends that autism exists, but seeing an autistic person in real life will do loads more to raise actual awareness.
2. Focus on ability, not just disability.
Despite the occasional viral story, autism is usually seen as a difficulty above all else. After all, if a parent only learns about autism when their child is assessed for it, their reaction is unlikely to be “oh wow, my child’s going to be Mozart!” If a teacher learns that a child in next year’s class is autistic, it’s very easy to ask “what difficulties might I face?” before asking “ok, what are his/her strengths?”
And let’s be honest, we don’t want to avoid talking about the difficulties. There’s a need to get the balance right. We want to emphasise and celebrate autistic people’s strengths, but we don’t want to pretend autism is sunshine and rainbows and unicorn farts.
Real awareness means focussing on ability and disability.
It means not being shy about discussing the difficulties, but it means talking about disability in a positive way, so that the person never has to feel limited.
Here, have a quote I sometimes use in my talks.
3. Don’t be afraid.
I hid my Asperger’s for far too long.
I literally didn’t talk openly about it until the age of 29. And there were a couple of reasons for that. Partly shyness, partly anxiety, partly fear of other people’s reactions, but mainly having a negative opinion of myself.
And in all those years of keeping it to myself, nobody became more autism-aware through knowing me. (A load of people misunderstood me though, which increased my social anxiety.)
Being brave enough to speak up is one thing. And it’s a fantastic thing. But not being afraid also involves talking confidently about autism.
It means saying:
“Yep, my friend’s autistic, and he’s pretty awesome.”
“My friend’s… er… on the spectrum. But he’s ok, really.”
It means not talking about someone’s autism with undertones of “oh, poor thing”.
It means not apologising when asking for accommodations. Don’t get me wrong, we all want to be polite – and British people like myself can’t say two consecutive sentences without apologising for something. But thanking someone for accommodating your needs will get you a lot further than apologising for the inconvenience. (I have thought myself to be many things over the years, but the worst years of my life were when I was made to think of myself as an inconvenience to better people.)
We’re at an important crossroads right now: almost everyone has heard of autism, but not everyone knows how it affects us. And people’s understanding varies so much. Some are stuck in the Rain Man days, some think it’s like the Big Bang Theory, and some think it’s like “my cousin’s workmate’s friend’s child, who has autism, I think.”
One way or another, we are going to reach the other side of that crossroads. And what autism awareness looks like at the other side depends on how we choose to talk about it now.
I remember ten or fifteen years ago, when everyone thought depression just meant being sad all the time, or that having anxiety just meant being nervous occasionally. We are light years ahead of where we were back then, and we managed it was because people with depression and anxiety chose to be brave and started talking about it. A whole generation of people affected by mental health issues (including myself) have a lot to thank those pioneers for. Mental health awareness was not raised by changing profile pictures, and these people knew it.
I sincerely hope we can do the same for autism – that enough of us will be brave enough to reach out and raise actual awareness.
Chris Bonnello / Captain Quirk
Chris Bonnello is an autism speaker, available to lead talks and training sessions from the perspective of an autistic former teacher. For further information please click here (opens in new window).
Copyright © Chris Bonnello 2015-2017