Collaborating for action 1 Autreach: why, what, and how Dinah Murray and Roger Turner

1. Collaborating for action 1 Autreach: why, what, and how Dinah Murray and Roger Turner

2. Collaborating for Action: Autreach i • Why • long term goals • why groups, why collaboration • What • has happened since Autscape 2007 • ... including two case studies • How • making useful alliances • appropriate online services for collaboration • Where next?( i = link to web page)

3. The message "There is no-one who can't be saved!" was found on the beach in Warrnambool Australia by Beatrice Kurmann, Wendy Lawson, and Dinah Murray in November 2001. To us it is a message about emancipation.

4. Long term aim:Change awarenessso as to change practice

5. Change awareness so as to change practice • To make anything new happen we have to change the way people think • Do research • Take some control of the media • Make our presence felt in powerful forums • When how people think changes, so will how they behave

6. Why we have to be We • What is the point of connecting with others? • FEEDBACK • Different angles – different history of interests, different current set within shared agenda • Different strengths • Solidarity and mutual support

7. More on being a group • As a group we can make alliances with other groups • needed: agenda, credibility, action • not needed: cohesion created by criticising others • As a group we have a recognised public status • needed: effective public presence (website, videos) • not needed: large membership • As a group we have a forum for debate • needed: appropriate online services • not needed: systems enabling dysfunctional usage

8. “Sharing anchors community” • Groups of people are complex, in ways that make those groups hard to form and hard to sustain; much of the shape of traditional institutions is a response to those difficulties. New social tools relieve some of those burdens, allowing for new kinds of group-forming, like using simple sharing to anchor the creation of new groups.”Clay Shirky, Here Comes Everybody i(the power of organizing without organizations), p25. 8

9. Why collaboration? • Collective action is hard • Stages of development for groups: • information sharing • cooperation • collaborative production • collective action • Collaboration may be a necessary stage preparing a group for collective action • services like email lists may simplify group formation and simple information sharing, but may not support the collaboration stage that has to precede collective action

10. What we stand for http://www.youtube.com/watch?v=wV2App-zNzY

11. What: after Autscape 2007 • AutreachBB i • Autreach discussion forum (Bulletin Board), Europe wide, started by Selina Postgate • Politics of Autism meeting i • organised by Roderick Cobley • Larry Arnold, David Morris, Dinah Murray • Speeches are online at autreach.org.uk • AutreachIT i founded • pilot research projects in care homes • supports “actions” (campaigning, consultation) through autreach.org.uk collaborative website

12. Politics of Autism meeting • Many people who came put their names down • Some of those came to future meetings • Those who kept coming became founder members of the London Autistic Rights Movement (LARM) i • Audio recordings of meeting, and more information about LARM, on the Autreach website: autreach.org.uk

13. Changing awareness – progress • Dealing with the media (case study 1) • Creating and disseminating our own video material (Posautive i, Autreach/ASAN video project i) • Reaching key decision makers in government (case study 2) • Changing the focus of research • Changing the content of training

14. Case Study 1: Dealing with the mediaLetters to The Independent • Letter from “Treating Autism” • NAS replied (quickly but weakly) • LARM and AutreachBB discussion • Anya’s phone calls to letters editor • Letter from Phil Culmer lead to contact, joining London ARM • 6 letters from members published • Complete correspondence i on autreach.org.uk

15. Case Study 2: Key decision makersPOSTnote on Autism • What is a POSTnote? • ‘Parliamentary Office of Science and Technology’ briefing document for civil servants and MPs, etc. • How did POSTnote involvement happen? • Late request by researcher to meet adult autistics (fumbled by NAS: not referred to user group) • Meeting between researcher and 5 members of LARM and AutreachIT was gateway to involvement in whole process

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17. POSTnote: what happened i • Draft title ‘Autism Spectrum Disorders’ • Meeting with researcher, with rewritten summary to highlight issues • Detailed review of draft document, changes suggested and accepted • LARM speaker added to launch seminar • Private pages i on Autreach website used throughout to coordinate work (shared with researcher as well as Autreach participants)

18. Making useful alliances

19. Identifying allies via shared agendas • Agenda = that which is to be acted upon • eg Disability movement • social changes need to be made to address individual struggles • See Steve Graby’s presentation at Autscape 2008 i

20. Maximise your credibility 1 • Know key points well, be prepared, read around • Show your potential ally you have identified a shared agenda • Show you are not on your own – power and solidarity of groups • Let your potential ally know – as subtly as possible - your credentials and those of members of your group • and the group’s track record (if any)

21. Maximise your credibility 2 • Think about presentation – it is very important in the NT world • As a group • at least have a website and logo • and possibly an official structure • As an individual • look smart, or at least be obviously clean • be respectful • behave respectfully even beyond what in your eyes is deserved

22. Maximise your credibility 3 • Use slowed down communication to reduce the pressure and improve the result, ie mail or email • Keep your analysis of your comrades’ faults to within the group • Avoid clashes with potential allies, unless you have powerful recourse, eg to legally enforceable rights

23. Avoid clashes • Keep your analysis of your ally’s faults to yourself • Accept misunderstandings as part of the process • but try to get past them • Delay responding when emotional – leave that angry email in the drafts folder for at least 24 hours! • then think about it again • Ponder and share with others best ways to approach thorny issues

24. Recognise hierarchies • Recognising hierarchies is part of what is going on for most people much of the time • In most hierarchies the inaccessible top people depend a lot on input from below • Many organisations have quite detailed descriptions of the positions people hold

25. Appropriate online services for collaboration

26. How: Backpack websites • Web-based application • Share web pages instead of emailing attachments • Track versions, changes, history • Make pages public to create visible presence for group • Organizing tools: shared calendar, newsroom, reminders • Psychological effect of revisable publication

27. Backpack example: POSTnote • Small group can collaborate on draft documents, with instant visibility of everyone’s changes • Replying with a modified text like this can be a quick way to generate a focussed response.(Note: “disabilities” was replaced by “differences” in sentence above so that reference to disability under social model could be added later: it doesn’t represent a rejection of classifying autism as a disability) i

28. “Why email is addictive (and what to do about it)” • Email is addictive because it is [operant conditioning with] a variable-interval reinforcement schedule”[Tom Stafford, “Mind Hacks” i]

29. How (to avoid) problems with email groups • This pattern has happened over and over and over again. [The organisers] assumed certain user behaviors. The users came on and exhibited different behaviors. And the people running the system discovered to their horror that the technological and social issues could not in fact be decoupled.”[Clay Shirky, A group is its own worst enemyi]

30. More from “A group is its own worst enemy”[Clay Shirky] • ...as anyone who has put discussion software into groups that were previously disconnected has seen ... incredible things happen. And then, as time sets in, difficulties emerge...” • ...even if someone isn't really your enemy, identifying them as an enemy can cause a pleasant sense of group cohesion. And groups often gravitate towards members who are the most paranoid, and make them leaders, because those are the people who are best at identifying external enemies.” 30

31. Autreach Network i • A network of autonomous groups, adopting some basic principles(join and help to define those principles!) • Not a group or organisation (even an “umbrella” organisation) • AutreachIT, London ARM, AutreachBB • Website(s) provided by AutreachIT

32. Where next? • What happens now? • Autreach/ASAN video project i(deadline 1st September) • New groups? • A real Autreach Network? (“Autreach <your name here>”) • ASAN? AASPIRE? • making useful alliances...

33. The Autreach/ASAN video project • We are looking for videos up to 2 minutes to be made by autistic people about these questions: • In what ways does autism help make me who I am? • What “path” led me to making this video? • How would I encourage and advise parents of autistic children? • For details see autreach.org.uk i( i = link to web page)