Uniquely Me Episode 5 – engulfed

Episode 5 of “Uniquely Me” aired tonight on MediaCorp’s Channel 8.

Uniquely Me – episode 5

I have to say this episode was the most unsettling to watch – almost sliding down the slippery slope of the tragedy-cum-heroic narrative, this episode featured two ‘strong’ women speaking about their lives with their autistic children, who are now young adults.

I felt very sad for the young man, Zhen Yu. Far be it for me to doubt his mother’s love for him, her dedication towards the young man pervaded the space, but there were many moments in her interaction with the young man that made me cringe and even bristle. I felt his distress, there were moments where I knew he was attempting to communicate, but the mother completely missed the gestures and sounds he made, and she chided him, as if he was a naughty toddler making a nuisance of himself, preventing her from ‘adulting’ in front of the camera. There was a split second where she even grimaced and rolled her eyes. There was a sense of embarrassment, she looked exasperated and annoyed, when interacting with him. The mother spoke mostly about her hopelessness and despair, not his.

The other autistic young person, Edura, appeared to be happier – there was a lot of physical affection going on and some smiles and laughs. Edura’s mother runs workshops or ‘sharing’ sessions for other mothers with autistic children, on physical touch and muscle relaxation. I did cringe at the word “heal” – just like “cure” and “recover” all speak of ableist concepts of autism as a scourge / disease – but I’ve come to expect it of the neuronormative way of thinking.

– smiles and laughter –
… “heal” … ???

I don’t know what to make of this episode. Stylistically, I can see a commonality across the other episodes in the crisp and gentle but detached reporting style and lack of an excessively emotional musical soundtrack, but this one came across as the oddball, the sore thumb. I am left with a metallic taste at the back of my mouth, my tongue is dry and my senses somewhat stretched thin. I have more questions than I have observations, or perhaps my observations lie in the questions that oozed out from cracks and fissures?

Why does nobody seem to pick up on the distress of the young man, Zhen Yu? The camera – the ‘eye’ of the viewer – wanders in and out of such stark moments of grief and frustration, I am flabbergasted at the cluelessness of everyone around.

Edura comes across as very much well connected with those around her, yet the people bemoan the sad fact that she is unable to speak. To me, just watching her body language, she is conveying a lot. Yet, I feel she was not duly recognised for her efforts. Why do neurotypicals place so much importance on speaking? And if words were so important, then why has nobody tried Augmented Assistive Communication (AAC), Sign Language or other alternative ways of making worded communications?

To be honest, there are no easy answers. The struggles and challenges are real. The road is long and fraught. Yes, yes, and yes. But what is frustrating about this episode is that everyone is busy addressing the camera, all speaking with such confident incomprehension their manifold non-autistic interpretations and opinions, their non-autistic feelings and dealings, non-autistic lion-hearted mettle, non-autistic despair and despondency. The protagonists here are the mothers, not the autistic persons at all – and there is even a doting aunty in the mix too. Tears, fears, snappiness, vulnerability, dreams dashed, ‘inspiration’ and obfuscation, rushing around putting all the externals in place, so preoccupied with whatever their ‘mission’ may be that there was, for me, no significant poignant moment of simple tenderness or gentle stark confrontation – quite unlike in Episode 3. The title of this episode shouldn’t be “Uniquely Me” it should be “Momma Interprets Me”. Sigh…

… “imperfections in life”…

It was, frankly, an exhausting watch. I know the director tried to keep it unembellished, but the strong overpowering personalities of the women – and their neurotypical views of autism and emotionality – took over the entire domain in a rather trenchant way. I am overwhelmed by the sheer force of the non-autistic personalities in this episode – engulfed and tired. Perhaps this, too, is the ‘telling it like it is’ – after all, the reality is that autistic persons are inundated and suppressed, oppressed and repressed by the non-autistic narrative of autism.

Now, I am wondering how the last episode, in which I am featured, will unfold. This is making me a tad nervous. And it has brought home yet another glaring fact: no matter how well-meaning a production may be, no matter how steadfast the intentions, when there is no in-depth and thorough consultation with actual autistic persons in the creative process of such a work as this featuring autistic persons and their lives, the unpacking remains through the lens of normativity.

Still, for what its worth, this series has succeeded in a way to throw a spotlight on Autism in Singapore in a humane way, albeit rather ragged and fragmented, without the lavish, lush helpings of smothering inspirational-porn. I didn’t notice any excruciatingly melancholic violin music, anyway. A relief, to say the least.

Perhaps next time, Actual Autistic film makers will emerge to tell our story from our own perspective, and perhaps our community will some day find a voice of our own?

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With Us

(Transferred from Bunnyhopscotch.)

“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).

Neurotypical Advocacy & Allies of People on the Spectrum

“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 withus, 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.