Preston
Bravo Colin et al.
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From: Colin REvell <[log in to unmask]>
To: [log in to unmask]
Sent: Tuesday, 5 May, 2009 12:37:05
Subject: FW: Press releas;- AUTISTICS EXCLUDED FROM DOWNING STREET AUTISM EVENT
Subject: Press release
Please find attached (see below) the press release which was sent to all the London newspapers last night. Feel free to distribute it further.
The leaflet and LARM's letter are appended to the press release.
My photo is on there purely because I am told that having a face makes publication more likely! If there are some good photos taken this
evening I would be more than happy to send those out with a further press release saying what happened.
All the best for this evening to those of you who can be there.
Selina..... Press release below....
Press Release
FOR IMMEDIATE RELEASE - MONDAY 4TH MAY 2009
AUTISTICS EXCLUDED FROM DOWNING STREET AUTISM EVENT
Photo opportunity:
5.30 p.m. Tuesday 5th May 2009
outside the gates of Downing Street, Westminster SW1A
members of autistic-led organisations will be drawing attention to their exclusion from a reception to celebrate World Autism Awareness Day,
contact Selina Postgate (of Autreach Online) on 0117 907 0721
or 07531 888 365 or email southwestarm@ googlemail.com
Autistic people are furious that nobody has been invited to represent any of their user-led organisations at a major Downing Street event – an event held to celebrate awareness of autism!
Some of those spurned will be making their presence felt outside the Downing Street gates, by asking the people attending the reception to record messages of support on video. Many other representatives of autistic-led groups will be unable to attend even this media call, as the personal assistance they need to travel to the event has not been funded.
Autistic-led organisations excluded from the celebration include:
Autscape (a thriving annual conference run by and for autistics) www.autscape.org
Neurodiversity International http://www.neurodiversityinternational.org.uk
London Autistic Rights Movement c/o [log in to unmask]
Autism Rights Group Highland http://www.arghighland.co.uk/
Autism North East http://www.neurodiversity-northeast.org.uk/
Autistic Organisation Mid-Wales http://www.autisticorganisation.co.uk/
Birmingham Autistic Rights Movement c/o [log in to unmask]
Lancashire Autistic Rights Movement c/o [log in to unmask]
In addition, no representative from any of the National Autistic Society’s User Representation Groups appears to have been invited, nor any of their autistic councillors or trustees.
Quotes: (all quotes may be attributed to Selina Postgate of Autreach Online)
"How invisible are we? It makes me wonder whether some of these charities aren't frightened of real, live autistic grown-ups!"
"I feel so let down. The NAS [National Autistic Society] recently ran a campaign about autistic adults called “I Exist”. So they know we’re here, but they still didn’t invite any of their autistic members to the party.”
"This is a highly symbolic event, and a highly symbolic omission"
"How well do these charities represent the interests of the people they purport to represent when it doesn't occur to them to invite even their own user representation groups, or their autistic trustees and councillors?"
“People from all the major autism charities will be there. It's scandalous that not even representatives from non-political autistic-led groups, such as the highly active and effective Autscape, have been invited."
“Autistic children become autistic adults. Sometimes I think “Autism Speaks” wishes we didn’t, because we’re not so pretty and appealing to funders. That still doesn’t give them the right to exclude our organisations en masse from a significant government event.” [Autism Speaks was given the job of compiling the invitation list.]
“It’s a civil rights issue. Local autistic rights groups have been springing up around the country as for several years now, and it’s time those who have been used to patronising us realised we are not going away.”
“The well-worn disability rights slogan ‘Nothing about us without us’ applies to autistics too!”
Notes for Editors
The Reception will take place at 11 Downing Street between 6 and 8 p.m. Representatives of autistic-led organisations will be gathering outside the Downing Street gates from 5.30 p.m. with leaflets and video equipment. This is not a political demonstration, but a media call.
The guest list for the even was drawn up by ‘Autism Speaks’, a relative newcomer to the UK charity scene which has come under fire in the USA for its poor treatment of autistic adults.
Selina Postgate, pictured below, runs ‘Autreach Online’, a network connecting UK and European Autistic-led organisations, and is on the planning committee for the well respected annual Autscape Conference. She is among the autistic adults who will not be attending the Downing Street reception to celebrate World Autism Awareness Day.
On following pages are a copy of the leaflet which members of autistic-led organisations will be distributing and a letter from the London Autistic Rights Movement, also for distribution.
Tuesday 5th May 6 – 8 p.m., 11 Downing Street
You are invited to a Reception to celebrate
World Autism Awareness Day
"I'm sure it's just an oversight”
a non-autistic NAS council member
Autistic-led organisations which have not been invited to send a representative today include:
Autscape (annual conference run by and for autistics) www.autscape.org
Neurodiversity International http://www.neurodiversityinternational.org.uk
Autism Rights Group Highland http://www.arghighland.co.uk/
Autistic Organisation (Mid-Wales) http://www.autisticorganisation.co.uk/
Autism North East http://www.neurodiversity-northeast.org.uk/
London Autistic Rights Movement c/o [log in to unmask]
Birmingham Autistic Rights Movement c/o [log in to unmask]
Lancashire Autistic Rights Movement c/o [log in to unmask]
In addition, no representative from any of the NAS’s User Representation Groups
appears to have been invited, nor any autistic councillors or trustees.
Ignored and excluded - by the very charities who say they work our behalf!
We Exist!
Please come and tell us your thoughts. We are here with video cameras to record the support we are shown.
Look out for the We Exist! sign.
NOTHING ABOUT AUTISTICS WITHOUT AUTISTICS
Leaflet produced by Autreach Online (http://autreach.backpackit.com/pub/1382191) on behalf of all the above groups
Letter from London Autistic Rights Movement (LARM):
Dear all,
The London Autistic Rights Movement, as an organisation controlled by autistic people, deplores the resolution issued by the UN to mark the first World Autism Awareness Day. Aside from its complete failure to address any of the access issues which neurodiverse, including autistic, people have, it is also a deeply pejorative statement, which focuses exclusively on treatment and portrays autistics as disordered and requiring treatment, rather than the correct practice of seeking to ensure inclusion. This would require such things as altering design standards to end the tyranny of noisy, busy, open plan environments and replace them with flexi-plan and cellular environments, as well as enforcing stringent noise insulation and regulation, ending strip lighting, and creating low arousal environments. Also, tackling metabolic (especially food and medicine) access issues. Furthermore, we also insist that autistics' right to communicate and to control the kind
of services that are available to us must be acted upon and seen as central.
In adopting the tone and content it has done in its resolution, the UN allows the continuation and perpetuation of a status quo which condones the locking up and drugging up of huge numbers of neurodiverse including autistic people, and the exclusion of most of us from the workplace and most other aspects of life. This situation only benefits those "service providers" seeking to make a huge profit at the expense of autistic people.
We welcome in principle the UN's creation of an Autism Awareness Day in perpetuity on April 2 of each year, in accordance with General Assembly UN Resolution 62/139. World Autism Awareness Day of 21 January 2008. However, the work around World Autism Day is unlikely to have a positive impact on the lives of neurodiverse including autistic people and to meet our real needs. The meeting of neurodiverse/ autistic-led organisations with the Commission on Access to the Built Environment (CABE) under the auspices of the Equality and Human Rights Commission (EHRC) is much more likely to be of practical use.
Similarly, We welcome the UN Convention on the Rights of Persons With Disabilities (hereafter Disability Convention), and other UN Human Rights Conventions and provisions, as mentioned in the Resolution itself. But, we note also the failure of the UN to apply the principles of its own Disability Convention to involve disabled people and the organisations we control in all matters which affect us. And especially to involve in any way whatsoever, autistic-led organisations. This included in the drafting of the Disability Convention itself, in which no attempt was made to ensure that neurodiverse including autistic-led organisations were actually able to address the UN itself or were in any way involved in actually drafting the Disability Convention. This was in marked contrast to the involvement of organisations higher up the "hierarchy of impairments" representing the far less common impairments of deafness, blindness and partially sightedness, amputees,
wheelchair users and other more obvious (and/or less stigmatised) impairments.
Instead, in a move akin to nineteenth century conferences about women's rights only inviting organisations led by men to speak, the United Nations has trampled over the spirit and the letter of its own Disability Convention by organising World Autism Awareness Day through an organisation not controlled by autistic people and with no intention of ever becoming so, and which has described autism as a "plague" and an "epidemic", namely Autism Speaks.
Scientifically, autism is, of course, neither. Nor is it a disorder. Rather it is a difference which society needs to accommodate. Unfortunately, Autism Speaks describes autism in entirely negative terms. There is no mention of positive aspects of autism or of our talents, or of the need to change access standards, including over sensory issues. Only of "autistic spectrum disorders", not of "autistic spectrum differences". This is a flagrant violation of the spirit and letter of the UK Government's commitment under the Disability Discrimination Act 2005 Disability Equality Duty to involve disabled people's organisations and to create a "positive image of disabled people".
All World Autism Awareness Days must be led, run, managed and controlled by autistic-led organisations. And all UN resolutions on the subject should meet with the approval of our autistic-led organisations, and involve them at the drafting stage (at the expense of the UN). And at every other stage of the process. This has been supported by Neil Crowther, Senior Policy Manager on Disability at the UK's Equality And Human Rights Commission, the main official body tasked with the promotion of the rights of disabled people. As he says:
"the principle of 'nothing about us without us' has and continues to be critical to the evolution of disabled people's rights and full participation in society, and that is in the spirit of both the UN Convention and the DDA."
We therefore demand:
1. The admission of our disabled people-led including neurodiverse and autistic-led organisations' representatives to this reception on May 5th, 2009 at no.11 Downing Street.
2. The reading out and distribution of this letter at the reception by our representatives.
3. That the programme of the reception and the official statements issued at it be re-organised to meet our satisfaction.
4. That the full costs of disabled people-led including neurodiverse and autistic-led organisations attending the reception are met. Including compensation for any time taken off work.
5. That the reception emphasise the need, in accordance with the social model of disability, to have our access needs met through legal revision of access standards.
6. And the need to transfer the control of disability organisations to the people they claim to represent and speak on behalf of.
_________________________________________________________________
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