This weekend, I revisited an early musical work of mine, from 2008, about the agony of communication across neurocultural differences. I spent a bit of time contemplating the work, the obvious (that which is performed and disseminated), as well as the intimate and private (that which remains in the heart and mind of the composer alone). I also put in some closed captions, and, in so doing, realised that I was in fact creating another separate work, and extension perhaps but still separate from its original.
Almost ten years afterwards, my journey has taken me through amazing wonderment, experiences I couldn’t have imagined ahead of time, and some even surreal or bizarre, yet no less valuable intrinsically. Continue reading →
Autism-focused organisation. Autism-specific job. Non-autistic director suddenly thinks it is a good idea to jump on the ‘inclusive’ bandwagon and hire an Actually Autistic person for the job. Great going so far.
Instead of hiring a qualified Autistic person with a PhD / Masters / Degree / skill qualification for the highly complex job, the non-autistic director gets an Autistic person with no qualifications to do the same job for free. No pay. Yes. Nothing.
Imagine, a hospital looking for a heart surgeon hiring just anyone from the street with an avid interest to do the job for free, instead of a qualified surgeon with years of experience? Sounds too ridiculous to even think of? Well, this happens a lot in Autism organisations run by non-autistics. DIY hobby-land free-for-all?
A horrible situation. Autistics are exploited on all levels, and forced also to devalue one another. The unqualified Autistic eager to jump in and do the job for free is hoping for some recognition and an unconfirmed promise for some kind of paid work in the future. They do not realise that they are being exploited and derided, and that doing this is ultimately harming a fellow autistic who is qualified for the job, having worked very hard for many years to gain the relevant credentials against immense odds. Even more insidious and ominous is the result of this: low professional standards, thus services proffered are inadequate at best, and erroneous at worst. What are ‘Autism-focused’ organisations offering to autistic people, and what are they saying in so doing?
Too many non-autistic people entering the currently trendy Autism Market are blatantly making money and gaining fame on the Autism Bandwagon, while tossing out substandard services, stirring strife and disharmony in the Autistic community, and making a mockery of the very people they are supposed to serve.
I can do a whole lot of things, and superbly well too. But autistic executive dysfunction is a very real thing, and I need help with the simplest stuff, without which, I am unable to do all the marvellous things as marvellously as I can. Autistic persons need support, no matter ‘where on the spectrum’ we may seem to be. That is why functioning labels are harmful. Stop referring to us as ‘high’ or ‘low’ functioning, we are autistic, we are humans. Start trying to understand how you can support us to do the things we can do well, so that we can in turn help you do the things you cannot do well.
I am still reeling from the multiple fragments and loose fibres swirling around my headspace after the incident. An identity snatch. Someone set up a Facebook profile using the exact same name as mine. Then popped up on my Facebook space like an eerie little gremlin, ‘liking’ and reacting to my public posts. As soon as I saw my own name, I visited the profile and found nothing but an empty shell. Alarmed and in shock, I quickly posted a note about my name being used in a fake account. As soon as that declaration hit cyberspace, the person began sending me and a few of my friends connecting requests and private messages.
The person vehemently declared that they were genuine, they just happened to have the exact same name, and they were also autistic / aspie. I asked for proof of ID, but of course nothing came forth. The tirade continued in my Inbox, in CAPITAL letters – aka. shouting. But everything went hush after I said I will lodge a police report. The last querulous little missive was one final stab at transferring guilt: at the end of a string of adjectives describing me (“mean”) and some “how dare you do this to poor little me” stomps, came the grand finale, “I AM DELETING ACCOUNT DUE TO HARRASSMENT!” Continue reading →
It’s Autistics Speaking Day. I didn’t know there even was such a thing, until I saw my Facebook feed flooded with it, by various Autism advocacy groups and pages that I’ve subscribed to.
Righto. So. Speaking of speaking. I posted this long ramble the other day, about my struggle with a certain person regarding respecting my preferred mode of communication, “gaseous exudations.” While it does seem on the surface as if nothing but an angry rant, and perhaps some of you NT folk may be even slightly (or more than slightly? who knows?) offended by the blunt-speak, it’s actually a very serious issue, and a deeply painful yet far too common feature of Autistic life. Continue reading →
Respectful social communication 101: In this day and age of technological advancement, there are multiple ways to communicate. If a person (with or without disability) tells you their preferred mode of social communication, please respect it, that is, if you wish to communicate with the person. Insisting on your own way and disregarding that person’s repeated requests is nothing but utter contempt and disrespect. Simple.
Communication is a complex effort. However, respect can be a really simple thing.
Sadly, there are people who just cannot connect in a straight-forward way, with mutual regard, across respectful space. I’ve come across many such folk along my more than half a century of traversing the hazardous human social-scape. Continue reading →
Change can and does happen. Hope is not always just a frilly fantasy. Sometimes, even after one has given up and walked away, change unfolds.
Many years ago, I walked away from a connection with an ‘autism mom’. She wasn’t the typical, aggressive mom-crusader that you see in online mom-forums. She was always private about her woes, but nevertheless, at the time, so full of her own grief and struggle that she was unwilling to hear whatever I had to say.
Our paths crossed again recently. Her autistic son is an adult now. The struggles have been fierce, tumultuous, and the future is still shaky and uncertain. Yet, I see an acceptance, and embracing of her child, and a fierce loyalty and determination to support him, that I never saw before. Continue reading →
It isn’t true that autistic people do not know how to work in a team. We just need clear instructions about what is expected of us, and consistency in interactions. The autistic person is just as willing as any other to perform as a team, it’s just that the autistic mind functions somewhat differently, so better understanding all round is necessary.
Today, I was reminded again how amazing the people I work with really are. Continue reading →
It’s been more than a week battling this cold and cough. My voice is all but gone. I sound like a constipated frog (do frogs really constipate?). Been through the dramatic works, the wailing, flailing, fainting and vomiting stuff etc, and now finally on the mend. Still coughing alarmingly – feels like the guts are all going to spurt out at some point or other – and noticing some pretty aghast looks being thrown my way, through the tears in my eyes while attempting to blow my nose. Too much multitasking, being sick is unpleasant for anyone, but being sick with hypersensitivity cranks up the ‘horrid’ volume manifold levels … and over and over. I am missing my Lucy. A lot. Clement Space was inspired by Lucy.
Nevertheless… I have been building clement space… in little ways, struggling valiantly, and in the more ‘official’ manifestation, of course, the exhibition. The show must go on, and so it shall! Continue reading →