I’ve taken a deliberate and purposeful step away from everything autism related (online anyway) this last week and to be perfectly frank, its been a breath of fresh air. I’ve done some hard thinking and some hard talking/listening to family and friends and tried very hard to firstly compartmentalise what exactly I found so upsetting and offensive about the events of last weekend.
First, I was dismayed to find someone I considered an ally calling me names. It doesn’t matter under what guise it was – literary allusion or not – if you call people names they’re never going to find it easy to talk _with_ you.
I still haven’t been able to resolve the sheer mindless immaturity of this act and so I simply won’t try and rationalise it any more. It happened, it can’t be undone.
Secondly, I was even more dismayed – and deeply hurt – to hear someone I considered an ally accusing me personally and people I like of doing ‘things’. These things were never quantified and were never illustrated. I (we) were just supposed to accept they had happened.
I don’t operate like that. I do plenty of accusing on this blog. But I _back it up_ – and if I can’t back it up then I retract it. That’s how the world works. Nobody – under any circumstances – should be free to accuse anyone else of anything unless they can provide some evidence. Without that, we descend into anarchy.
Even more hurtful was to hear friends of the accuser wandering from blog to blog essentially saying ‘So? So you were accused of something – what’s the big deal?’ The big deal is integrity, respect, truthfulness. These things matter. Or at least, they matter to me.
A sideshoot of that issue was the same people saying ‘yeah, but underneath all the bluster, he has a point’. I cannot possibly convey to you how unbelievably frustrating it is to try and explain time after time that the underlying point – nothing about us without us – was never in question. Nobody thought otherwise. I was asking for the _specific examples_ of the allegations made against me and the Hub membership at large. Hijacking, usurping agendas, taking over.
This _is_ a big deal. To me, as someone who has spent the last 3 years invested in listening to autistic people regarding the autistic experience and trying to _support_ the agenda in one of the only ways I know how – technically – to hear that dismissed – _without any foundation whatsoever_ was like a kick in the teeth. That it should come from people that I deeply respected and who’s opinions I valued was the worst thing of all.
Thirdly, the vaccine connection. If anybody truly thinks that the vaccine/autism bullshit is anything other than the most important issue facing autism and autistic people right now then they need to pull their heads out the sand.
Right now, this week, a trial will begin that will effectively determine whether vaccines can legally cause autism. The outcome can potentially change the way the whole world views autism. The quacks lose and we can scale back a bit and move focus elsewhere. The quacks win….well, what happens then? Who knows, because as far as autism goes, all bets will be off.
Are you autistic? You’ll be considered first and foremost vaccine-injured. If you refuse treatment – what then? Will your ‘diversity’ be respected? Or will you be the new schizophrenics? Condemned to be held down and chelated much as schizophrenics were once held down and given ECT. Will you still be eligible for the help you get? Housing? Social? Monetary benefits…do you think you’ll still get them?
How about those autistic people who work? Think you’ll still have your employment rights? Would you be a ‘better’ employee for the company as autistic or chelated?
Are you the parent of an autistic child? Children who’s parents refuse treatment can be legally forced to surrender their paternal rights so doctors can apply that treatment. At the moment chelation for autism is seen as quackery. If this legal case goes through – who knows?
This happening right now.
Which brings me on to the concept of leadership. If autistic people alone want to not only lead and set the agenda but also decide what is acceptable for others to blog/talk about then they need to be exceptional leaders.
Leaders inspire, support their ‘troops’ and lead by example. They take responsibility. I haven’t seen much of that from certain autistic people of late. Indeed, when a leader is short sighted enough to think that its OK to ignore the vaccine issue then we are all – leaders and followers – in trouble.
If ever the autistic community needed leadership and vision in the face of a real, tangible threat then it is right now. This week.
I wish I could share with this (so far imaginary) leadership the emails I have received from parents this last week. If I could then I would tell my leaders that a good sized portion of their troops were now disillusioned and feel like they have been sold a bill of goods regarding neurodiversity. I feel a bit like that myself. Here is a quote from a parent (I was given permission to use this) who also happens to be ‘ND’:
All our voices are important. Even that of those who are less tolerant, as long as they can back up their thoughts and feelings with solid foundations, not walls that only bounce back reverberations of the original thought. I am afraid that some of our fellow ND associates have completely forgotten what the D stands for, and that truly bothers me.
It bothers me too. As someone else who is not NT but not autistic (e.g. – neurodiverse) I also think there are some people in the autism community who have forgotten that autism is a subset of neurodiversity, not its definition. They also seem to think that – as my email correspondent points out – ‘diversity’ = ‘autism only’. The people who originally taught me about awareness, disability rights etc continue to teach me but this time the lessons are not so pleasant and smack more of exclusion and not belonging to a ‘boys club’ than they do of diversity.
I got into this originally due to my daughter and that remains the overriding reason I participate. The idea of neurodiversity – that people with _a variety_ of differences – appealed to me instantly and still does. I don’t want to lead that community but I do want to participate – have my say – on how its agenda is set. I urge every parent of every autistic child, physically ND or not, to have their say too. I would temper that with reminding you that neurodiversity does not equate to autism and that as far as autism goes, you should have your say but never exclude autistic people – and be prepared for the weight of opinion to go against yours.
The saddest thing about all this is that I never thought that reminder was necessary based on our collective behaviour. The trap I fell into – until shown the nature of the trap by my big sister – is that not all autistic people do not want to hear your voices. The majority appreciate that you have something to add but they also know that they are (to borrow Kassiane’s phrase) QbE – Qualified by Experience – and that experience carries a large amount of weight.
In my next post I want to talk more about neurodiversity and how it encompasses – as oppose to ‘is defined by’ – autism. I’ll try and talk some more about my own ND neurology and why I am uneasy about how that neurology is viewed by some in the autistic community.
a shy, kind looking man wouldn’t you agree?
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