“For us without us” or “Nothing about us without us”? More and more, I am meeting non-autistic allies who are standing alongside our advocacy and lending strength and dynamism to our cause. Here in Singapore, there has been an ‘awakening’ of sorts too, but we have a long way to go before we can achieve deep rooted progress at the very most fundamental levels. We are a very ‘progressive’ city – judging by what’s visible to the eye, at least. We do know how to do things well, if we want to. And we’ve done so many things extremely well. For one, I am immensely proud of our airport. There’s no need for me to sing the praises here – you can look it up anywhere and everywhere. I’m also pleased and relieved that people don’t have to fear being gunned down randomly on the street or in school. We’re by and large a pretty safe city to live in, and I’ve lived in a few rather pleasant cities too, but none with the kind of placid security that Singapore has. I am also really encouraged by the many positive changes that have taken place in the disability sector – the higher levels of awareness and desire to learn better ways – even within the short span of the last two years that I’ve been back. We are a robust little nation, and this is proof that we can do things quickly if we decide we wish to.
OK, so, here, today, I am talking about Autistic equity and autonomy.
A prominent non-autistic advocate for Autism in Singapore asked me this question, and I have no reason to doubt her sincerity, in fact, I do believe in her dedication to our cause (paraphrased):
Are only Autistic people allowed to advocate for Autism? What about non-Autistic people like parents and friends? Do we not have a stake in Autism Advocacy too?
My answer was probably a tad too wordy for this kindhearted person, because she never replied thereafter, leaving our ‘conversation’ without cadential closure, which is a ‘normal’ part of interaction with non-autistic persons. I am fine with that, technically, it’s all cool, except that this kind of thing leaves my autistic brain inside an echo chamber of very loud silence, which I am not sure what to make of, really.
Let me try to put it through again in a more neat and tidy nutshell, because I understand that non-autistic brains tend not to like too many details, and typical autistic communications tend to be detailed – hence the tension between the two realms. (Back to the empathy issue – Empathy works both ways, shouldn’t it?)
Autism Advocacy benefits greatly from the voices of our allies. We cannot do this alone. But allies are allies, you need to allow Our voices to lead the way, to shape the form and direction, and you need to listen to us about us. Stand with us, not for us.
And here is an article that surfaced in my reading feed this morning on this very subject (click on the title to link).
“In the world of autism advocacy, it is rarely the autistic voices which are pioneered in the mainstream. Neurotypical advocates use their voice and their privilege to speak on behalf of, or in place of, the autistic community.
While these efforts are often well-intentioned, they are contributing to the continuation of stereotypes that autistic people are incapable of speaking for themselves.”
This is very true, and especially ‘in-my-face’ here in Singapore. There are so many well-meaning people, Singaporeans are by and large kind people, and even generous too, look at how people donate money so freely to causes they think are worthy. But for the Autistic community in Singapore, Autism Advocacy is still very matriarchal in construct. It’s the “Mum knows best” mentality holding sway here. It has a colonialist flavour, yes, but not in a sinister way (or so I think and hope). It’s just that the “Mommy Knows Best” blanket wraps thickly and tightly around us. I understand this “mom” thing, because I would protect my Lucy with my very life if I felt anyone threatening her existence and / or the sanctity of our bond. But “mommies” also need to see that their autistic children have to grow up, and, regardless of the complexities of needs, everyone will some day have to be out there in society in some way or other. If we do not now begin to build a strong Autistic Community Spirit, who will be there to support the ones of us with more complex needs, in ways which are natural and intrinsic to Autistic Embodiment, when mommies leave (which is inevitable)? Who will understand, if not our own community? Who will speak out for those who cannot speak or do not have the resources to speak, if not the ones of us who are empowered who can and will do so?
“Even if the advocacy is rooted in the heart of a neurotypical mother whose child is on the spectrum, neglecting to amplify the voices of authentically autistic people creates barriers to empowering her child(ren) by reinforcing biases about the incapacity of autistic people to speak for themselves. This model of autism-as-a-mascot for neurotypical mothers has been a major source of contention within the insider autistic community.”
Actual autistic mothers here are largely underground, not many are willing to step up, for fear of being run down and vilified – and other reasons in the grand mix. One brave autistic mom of an autistic kid has begun a Facebook page containing great information on parenting, and she does offer some really astute insights on autistic style parenting. But by and large, we have non-autistic ‘experts’ on autism at the forefront of official and unofficial Autism Advocacy. Books are written and published, interviews given on public media, talks and workshops on parenting etc. But are our needs really being met, or is charity just doled out to us in Lego blocks inside colourful buckets?
I’ve repeated this question in many of my public speeches, especially vehemently in my TEDx speech last year:
Where are the Actual Autistic voices in this grand cacophony of opinions and interpretations?
We are here. We are rising from the miry depths, refusing to be kept under the bog. But it is a difficult struggle, not against the ‘enemies’ of advocacy but ironically because our non-autistic ‘allies’ are still unwilling to allow us onto our own platform. We are not staging a coup, of course not, why shoot ourselves in our flappy feet? we’ve worked very hard for the small bits of progress we’ve achieved thus far. We do need allies, for strength and dynamism, but we need you to understand, to look beyond the immediate discomfort of transitioning of ‘power’, that we are actually building a better world for your autistic children, for the future generations, for equity and autonomy – and we know best, as people who have lived it and are still living it. We need your help in this, but please listen to us with respect. We want a world where everyone is treated not just with kindness (because you already are superb at that) but with due regard, and work with us, not against or on behalf. Wouldn’t you like that for your children too?
Here’s something that a non-autistic mom started, which might be of interest – check out this blog: Learn From Autistics
And here’s a quote that stands out:
“I think the best thing NTs can do before starting any advocacy work is to talk to autistic people. Find out exactly what they want and don’t want. Learn about who you’re advocating for and don’t assume you understand everything they need/want. Sure discrepancies will arise, but I guarantee you’ll learn enough commonalities to get you started. And you’ll save yourself from making a few inevitable mistakes.”
Actually, it’s really simple. Just remember this, and the rest will fall into place somehow as we trundle along together:
Nothing About Us Without Us.