About me, without me & how people respond to legitimate questions

12 02 2015

I was interested in attending a conference being held in Glasgow by an organisation called Autistic Intelligence. They claim to be “a loosely affiliated group of worldwide experts in aspects of autism, a consultancy.” Comprised of writers, educators, therapists, researchers, and campaigners who all claim to have personal experience of autism in one way or another. The first person featured in their “About Us” section is none other than Professor Tony Attwood, a world renowned researcher in Aspergers. So far so good, right?

Well as an autistic person I was a little disgruntled at the price of their Glasgow conference for the unwaged, the low waged and autistic people. The sold out early bird ticket price was £60 rising to £70, an awful lot if you have no or little income. In my mind this excludes many people on the spectrum who do not have wealthy backgrounds or healthy incomes. So I emailed the organisation using their website contact form. It wasn’t my most articulate piece of writing but it got my message across in a particularly autistic style.

Personal information has been started out but nothing has been edited or removed from the following communication.

Hello Admin
You have a new contact request:

I was reading with interest about the upcoming conference in Glasgow but am disappointed to discover that even the now sold out “early bird” tickets for unwaged autistic people is out with our ability to pay. How can you expect autistic people to participate in wider society when a conference set up specifically to talk about us excludes us unless we are from wealthy backgrounds? Given the low employment rate of autistic people, there’s a far higher likelihood that they will belong to the unwaged/low waged category and given that £60 is only £12 less than the weekly income on JSA, the conference is an impossibility for up to 85% of the autistic community. Is this something an organisation set up on the backs of autistic people intended? Is exclusion from discussions and presentations about us the way forward? Added to this is the fact that parents tickets are even more expensive and there is no mention of carers. I could not afford to pay for one ticket let alone a necessary second to bring my carer with me. I am extremely disappointed but not surprised by this exclusion of autistic people.
From: ********@student.***.ac.uk – **********
Telephone:
Subject: Criticism
Senders IP: **.***.***.**

I was perhaps slightly blunt in my email but I’m getting more than irritated with the ‘all about me without me’ rhetoric of so many of these so called autism organisations.

The organisational contact responded within the hour. I have starred out information that I feel is inappropriate to share, although the author at the time obviously did not.

The cost price of this conference – venue, food and drink for attendees, speaker fees and transport and accommodation, handouts, and online-ticket-selling costs – is 70, provided 100 people attend, and there’s no certainty of that. I also give extra 20% discounts to anyone with financial problems.

Meanwhile I don’t get paid for running the whole show, choosing venues and speakers, answering the phone, doing publicity, writing invoices, answering emails like this, most of which are insulting as to my motives.

I am ** *********. I’ve just had a ***** *******, the first in ten years, as I was going up the stairs to bed. I fell backwards and fractured a rib, and did some major damage to the soft tissue in my chest. I was out cold for 3 hours, and on my own. I came out of hospital on Saturday. It will take me 2 months to recover, but I still have to be there in Glasgow to do registrations, and I still have to fund any shortfall on the costs from my own savings if we don’t break even.

If you have a problem, phone for clarifications before jumping to conclusions, please.

B****** J*****

I haven’t stopped laughing at this response. Not at the poor author’s misfortune, they obviously have had a very difficult time of it lately, but at how out of touch it seems to be with “intelligent” autistic people and their predicament: assuming verbal communication or desire to use a telephone; being excluded from discussions and conferences about their very existence due to financial barriers; and the attitudes of ‘professionals’ and many parents of what autistic participation is possible or even permitted.

Come to your own conclusions as to what to take away from this communication. I sure did.

My aim is to ensure autistic communication is heard, respected and valued. I want that our experiences are listened to and built upon when offering services or developing conferences about us. I’ll let you decide whether or not this organisation’s response does any of that.

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