#silentselfie: Why all the hate?

What Is #silentselfie?

For those of you who have been living within the cone of disability activism silence, #silentselfie is a campaign designed to raise awareness of autism. By taking a selfie with a finger over your lips and posting it to social media, the idea is that you are showing allegiance with people with a diagnosis of autism who do not use speech to communicate.

Cartoon of the bottom half of a woman's face with her index finger raised to her lips.

Picture provided by torbakhopper
Creative Commons licence
No changes made to image

Image Description: Cartoon of the bottom half of a woman’s face with her index finger raised to her lips.

But Why?

A key diagnostic criterion for autism spectrum disorders is communication impairment, and this can range from very mild to very severe. Some people with autism, as stated above, do not use speech to communicate. (I deliberately refrain from saying that people ‘are non-verbal’ because I don’t like to identify people by the things they cannot do.) In addition, people with autism can appear to have no interest in communicating with people around them.

Therefore, #silentselfie is designed to spread the word that there are people in the world who ‘do not have a voice.’

Campaigners vs. Anti-Campaigners

#silentselfie has good intentions but has received significant flack by disability activists and adults with autism. (I use person-first language, some adults with autism refer to themselves as Autistic adults.) As far as I can see, the problem has evolved as follows:

  1. People, including parents of children with autism who do not use speech to communicate, want to raise awareness that the person in their life with autism is a human being who just happens to be ‘unable to speak for themselves’
  2. With determination and genuinely good intentions for people with autism, the #silentselfie campaign is born
  3. Disability activists and adults on the autism spectrum (including Asperger’s) are angered by the campaign and hit back at its flaws, which I will discuss
  4. Supporters of the campaign are indignant that articulate individuals with autism are ‘unable to understand’ that some individuals with autism are not articulate, and furthermore, said articulate individuals have derailed a perfectly good campaign
  5. <insert social media shitstorm here>
Facebook 'thumbs down' symbol on a purple background

Picture provided by Joe the Goat Farmer
Creative Commons licence
No changes made to image

Image Description: Facebook ‘thumbs down’ symbol on a purple background.

So. What’s The Problem?

I mentioned flaws, which anti-campaigners have been discussing at length on social media. Here is my understanding of the flaws:

#silentselfie is based on the premise that people with autism are silent. But I spoke to my Mum this morning about what I was like as a young, inarticulate child with autism, and she said I screamed my lungs out. In the past, she’s also told me I spent hours lying underneath a chair flapping my hands above my eyes. As my speech developed, it was to repeat whatever people had said to me back to them.

At this point, you might be thinking, ‘Oh, but you know what we mean! That’s not communication – how could your Mum have possibly known WHY you were screaming, flapping or repeating words and sentences?’

Well, sometimes she could, and sometimes she couldn’t. But I was communicating in the best way I knew how, and I was far from #silent. The issue wasn’t that I was this ‘poor young thing with autism who didn’t have a voice’ – the issue was that the people closest to me were in the necessary process of learning how to understand what I was communicating. Sometimes, I screamed because I was sick. Other times, I was frightened. Other times, it was because Mum had kindly changed my routine to get me used to the Big Bad World!

Not using speech to communicate does not mean that a person is ‘silent’ – it just means that their communication may not yet have been decoded. Sometimes the decoding process is relatively easy, other times it seems impossible. In any case, #silentselfie is a well-intentioned but misguided campaign that spreads the message that ‘people with severe autism cannot communicate.’ But I had severe autism, and I communicated.

What’s The Solution Then, Smarty Pants?

If we *really* need campaigns for people with a disability, here’s what needs to happen:

  1. WHAT: They cannot be based on ‘poor young thing with autism who doesn’t have a voice’ sentiments. Why? Because everyone has a voice. Therefore, the focus needs to be on HOW to hear what people are saying even when it is difficult to do. It is the responsibility of people who use speech to communicate to learn what people who don’t use speech to communicate are SAYING – what #silentselfie unconsciously does is strips us all of that responsibility and pathologises a person with a disability as ‘the silent one’ – in a genuine but disempowering effort to advocate for them
  2. WHY: Because everyone knows that some people don’t communicate conventionally. What we DON’T know is that people who don’t communicate conventionally aren’t scary or in need of pity. If we’re going to ‘raise awareness’, we need to do it in a way that empowers people, not shrouds the only voice they have in a well-intentioned ‘silence awareness’ campaign
  3. HOW: By listening. We listen to the angry activists who do have autism, even when their message is unwelcome, or they communicate it in angry ways that seem to override the care and concern that have gone into creating the campaign, or they appear to be ‘more articulate’ than people with severe autism who #silentselfie was *actually* designed for. Because their message, beneath the fury, is simple:

‘People with severe autism communicate. If your child is capable of fecal smearing, screaming, self-harming or running away, then they are communicating. You may not know WHAT they are communicating, but the role of parents and other advocates is to keep working to find out. Look beneath the anger of a faction of the autism community and ASK – if #silentselfie is so wrong, then what would be right?’

The good news is, there is a place for all advocates. Parents love their kids, and do everything to protect them. People with autism, or even Asperger’s (I no longer have severe autism, and was diagnosed with Asperger’s in my 20s), while they may* have more conventional communication skills than a person with severe autism, also have moments where ‘conventional communication’ goes out the window. I still have meltdowns. My thoughts seem articulate in the moment, I feel sorry for the people around me (!), but my words aren’t always coherent. Sometimes, they’re not there at all.

*I am speaking in statistical norms here – the complexity of how individuals are impacted by disability is too vast for a single blog post.

We may not have severe autism, but we’re on the same spectrum. We can never speak for another person, but we have some insight into what it’s like to communicate in ‘stereotyped’ ways (a) without being heard, and (b) without it being recognised as communication.

Cartoon of a large red dragon standing next to a girl, who is saying 'I said I wanted a little red wagon'. A bunny is nearby, saying 'Sometimes it's hard to communicate.'

Picture provided by Jeannette E. Spaghetti
Creative Commons licence
No changes made to image

Image Description: Cartoon of a large red dragon standing next to a girl, who is saying ‘I said I wanted a little red wagon’. A bunny is nearby, saying ‘Sometimes it’s hard to communicate.’

That’s Not A Real Answer… I Want A #Hashtag

Okay. So if I’ve taken you with me, you might be rethinking #silentselfie. But you still want to DO something, right? You’re probably sick to death of strangers silently (or not so silently) judging you and your child? Awareness precedes change, right?

Here’s my hashtag – #everybodycommunicates. Along with said hashtag, we also need to work alongside local communities so that people feel more comfortable being around people both with and without disability, and to make mainstream schools, places of recreation, workplaces and public spaces more accessible to people with physical, sensory, intellectual and other disabilities. Creating awareness without practical action is like saying ‘I know I need to go to work to earn money’ then sitting at home all day thinking that something valuable has been achieved by knowing what needs to happen.

And it might also be wise to remember that if it’s difficult to know what a person wants/doesn’t want in their lives, then it is also difficult to know whether they want the details of their disability posted on social media. I’m in my early 30s and have only recently decided to disclose my disability online, and I’m eternally grateful that choice was always mine to make.

#everybodycommunicates

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