Tuesday, 1 November 2011

The 'Berlin Wall' for Autistic People

A while back, I wrote a post on some of the reasons why it’s difficult for autistics to articulate our experiences, most especially the lack in the English language of words with sufficient power to describe them. Today however, in honour of Autistic Speaking Day 2011,  I’d like to explore another block to our speaking – that of the attitude of others that precisely because we are autistic, what we say has no worth.

The process is one of invalidation. Because we are autistic, it’s presumed we can’t speak for ourselves, don’t know what we want, can’t articulate it if we do, and if we can and do speak, it’s presumed (and we are told) that what we’re saying isn’t valid, because “that’s just your individual opinion” (even when we make plain we’re speaking for a group), and “we know what you need” (better than you do, is the implication), or even that “if you can talk, you’re not really autistic” (despite our real and ongoing difficulties with life).

The resulting practise is one of patronisation. This can happen anywhere with anyone not on the spectrum, but is appallingly common in many disability or autism organisations, I am not going to name names here, but we all know the sort of organisations I mean. The ones who are reluctant to engage with other organisations run by and for adults on the spectrum, who have few - or none - of us on their boards, and who won’t allow us to help in any meaningful way, even when we offer. The experiences quoted below are fairly typical –

 “[I was] told to hurry-up and develop resources to encourage employers to employ adults with autism... while at the same time being belittled daily as the token autistic employee of the same organisation and experiencing micro-management because of "fears". Offering to review contract submissions valued at $x million only to be rejected as not having any relevant inputs or experience, then immediately afterwards getting to be (sadly and unfortunately!) the casting vote on repeat [government] panels that fair-handedly rejected those same contract tenders, and because they lacked precisely the input offered.”

“I've had this happen with [x organisation]. "We want your input, help us make the (preschool, adult vocational center, etc.) better for the autistics we serve, we'd love to have your input and have you work with our kids." Uh-huh, 3x at various meetings/conferences, not so much as a call back. But boy, do they know how to hand out my number when they get a call they don't know how to handle, like moms looking for group homes with openings or social groups in rural areas...”

“Still laughing at [the leader of an autism organisation] using the example of their having "employed" me… [yet all the while] forbidding me from talking to people about AS [when they came in to the office]. But she uses it to say "we are an aspie-friendly organisation".”

“I have been ignored twice by a Job Network that assists PWD into employment.. well they say they do.. but I would like to see proof of their ability. I had some good success when. I worked with one Job Network with helping PWDs… but yes I have been ignored, even when I explained what I used to do. Maybe I sounded too eager or something rather than just crunching people out like numbers…”

Additionally, when some aspies challenged members of one autism organisation committee on their claim to speak for adults on the spectrum, they were told ‘we know best’, and that, even they weren’t on the spectrum, the members considered themselves ‘qualified’ to speak for autistic people, and ‘not in need of input from autistic adults’.

I should note here that these aspies are mostly past forty years of age, some have advanced degrees, all have relevant life experiences or skills, and are articulate and self-aware. I’m not entirely sure what’s going on in the heads of the members of such organisations, but it does seem obvious they see us as ‘incompetent’ and ‘defective’ somehow in our capacities, and in need of their ‘help’ and ‘management’. This generally without looking at the individual spectrumite’s actual abilities or experience – regardless, they saw them filtered through the lenses of their perceptions of autistic people, rather than the reality in front of them. We are objects of pity, ‘lesser than’, someone to be ‘assisted’, but never, ever their equals. And certainly not fit to have an equal voice or (for the most part, there are some exceptions slowly emerging) to play a substantial or meaningful role in their organisations. Note – ‘their’ organisations – because so far, despite their claim to ‘speak for’ us, we are certainly not fairly represented in their management structures – and in many cases, not at all.

This is the ‘deficiency’ model of autism, which many of these organisations are still actively promoting – and given that they are seen as the ‘experts’ on autism, where they lead, the general public, and governments, will likely follow, in how they perceive autism. So they have a huge influence on how we are seen, how we are reacted to, how we are ‘handled’, what rights and opportunities are granted to us. This model has become a brick wall, a blanket to smother us and keep us helpless and silenced. It is I believe our own personal Berlin Wall, and like that ghastly symbol of oppression, it needs to be torn down.

And the only way to do it is to keep on keeping on – keep speaking, keep thrusting our truths and our realities forward whenever we can, keep pushing at that Wall till it crumbles to dust, in the face of the manifest and undeniable truth – that we are human beings, with the same feelings, the same rights, the same capacity for humanity, the same range of abilities, as everyone else. Only then, when this truth is known, will we be accepted as the equals we are.

1 comment:

  1. Great post - I think the wall makes an appropriate metaphor. Thanks for writing this.