I read Sara Luterman’s review of the new HBO series, The Outsider, with interest. The whole kerfuffle over Autistic (mis)representation in the media – from documentary to fantasy – has been stirring and swirling and churning and heaving and whatnot else in that great cauldron perched precariously atop a spitting fire of contention for sometime now. It seems that everyone wants to ‘own’ Autism, from the Autism Mom bemoaning her sad fate at having given birth to an incorrigible creature, to the big money-spinners in Hollywood, the politicians jumping into the fray, and the shrill voices of Autistic advocates struggling to be heard above the din, chanting “Nothing About Us Without Us!” as valiantly as possible (given that most Autistics do not function well in noisy, crowded spaces, the latter are doing their level best as it is, but more often than not, being ignored or vilified).
Autism has become big money. In The Grand Autism Circus, that is. Yet the revenue that filters down (if at all) to the actually Autistic is pathetically insufficient. Most of it goes to programmes that try to make Autistics appear as non-autistic as possible, “indistinguishable from their (neuronormative) peers”.
The problem with media interest is that it is a two-edged sword. And a jagged one that can create quite a bit of mess.
Reading Luterman’s review of “The Outsider” reminds me starkly of my own recent brush with (entertainment) media.
So, some local film company wanted to make a series about an autistic female character with ‘special abilities’. Some IT geek, of course. (Yeah, well, they do exist, they’re among the best paid and most employable ones of us autistics.) A representative of the film company found me online (not difficult at all), and asked if I could be their consultant. They have an actress already, and they wanted me to also follow her and give her advice on portrayal, etc. I was impressed. It was a great gesture – great because it was progress. You see, autistic people are seldom ever consulted about autism by people wanting to represent or portray autism. It’s the non-autistic ‘experts’ on autism that are always asked to give advice, whether paid or free. The parents, the teachers, the psychologists etc. And then, these ‘creatives’ go happily along and portray the autistic protagonists in mangled, tangled, bedraggled and sometimes utterly ridiculous and insulting parodies of the true autistic lived-experience. Pity parties or scornful derision, or monsters with no souls. Take your pick. Now we also have super geniuses thrown into the mix. Wow! Super Powers! Autistic Heroes! (Remember, this is Singapore, where, not long ago, a top university’s School of Medicine website used the word “disease” to describe autism.)
Well, the young people who contacted me were really pleasant. They had big dreams. And, to me, promising progressive mindsets. They were respectful of my authority as an autism professional as well as an autistic with lived-experience. At least that was how they came across to me. However, it all came to nothing after the seniors – people with authority to decide on money matters, that is – came into the picture. I told the young man who was communicating with me: some day, when you are in control of budgeting, if you still have this progressive mindset and you’re not by then swallowed up by the whole nefarious unscrupulous exploitative industry, please contact me. I will be happy to advise you.
Again, da capo ad nauseam. Yet another request for a lot of work but not a single cent of payment. Oh, please, could you do it as a friend? Um, hello, “friend”? I’d never met you before this. Do you know how long a friendship takes to grow and develop? Oh, but we have a psychologist advising for free! Why can’t you? Well, I pointed out that the psychologist – some ‘expert’ in autism I’ve never heard about before – has a full time job in an established autism organisation. That person is paid a decent wage. They can afford to do things for the fun of it, I guess? Besides, whether or not I want to be paid should be my prerogative, not for anyone else to dictate and cajole out of me using bizarre carrots on twisted sticks dangled in front of my affronted face (please, a psychologist???? can’t you at least be more creative?).
Listen, people out there wanting to contact me for yet more freebies. Read this carefully, ok?
I am a freelance consultant. Therein lies a huge difference. Every single committee I am invited to sit in is populated by professionals with full time employment. They get time off from their jobs to attend these meetings, which take place during office hours, so they are paid even while doing unpaid voluntary work. In my case, I have to pay out of my own pocket for every single one of those long, tiring meetings I attend: transport costs, hours spent, and the hidden costs of sensory overload and physical reactivity. Some of these volunteer forays have caused me to almost bankrupt my mental and physical resources, neurotypicals playing mind games, using the autistic as a token of inclusion etc. No matter, I did my volunteer time to the best of my professional and personal capacity, financed by little ol’ me. The time I spend doing freebies cost me much much more than whatever it costs the neuronormative well-paid professionals with the same qualifications that I have. Besides, it adds to their employment portfolio – I get nothing of the sort. Frankly, I am not even interested in worldly recognition. I just want to be paid what I am worth, commensurate with my qualifications and expertise, and the hours of effort I put in. It is respect and justice, plain and simple. But it is what disabled people are not even legally entitled to.
So, if you’re yet another one of those people in social enterprise, or commercial enterprise, and whatever organisation, and you want Dr. Dawn-joy Leong to feature in your sphere as some mark of “inclusion” to tick those boxes called KPI or some other acronym popular in Singapore, please note: I wish to be paid my professional fees. You see, in case you do not know, I worked hard for my qualifications alongside non-autistic people, I did not even ask for any accommodations apart from an assistance dog. And mind you, this was not given to me by my own country. My expertise did not drop down from the benevolent sky like a gorgeous refreshing shower on parched ground. So, you folks wanting to do any autism-related work, and you want to look trendy and progressive, you wish to tick those nice KPI boxes etc, then you will have to pay decently for my advice (note that I did not say “handsomely” just basic decency is required). If you’re not willing to do so, please don’t bother to contact me. Don’t waste your time and mine. Go away. Take your tokenism, bullying, exploitation and whatnot with you. You’re most welcome to come back when you have the budget for respect, justice, equity and true inclusivity. I happily work with those who are genuine about their vision and purpose to work towards true, respectful access and inclusion. Thankfully, there are such people in Singapore. So, be like them.