Collaborating for action Autreach

Collaborating for action 1
why, what, and how
Dinah Murray and Roger Turner
Collaborating for Action:
• 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)
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.
Long term aim:
Change awareness
so as to
change practice
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
Why we have to be We
• What is the point of connecting with
- Different angles – different history of interests,
different current set within shared agenda
• Different strengths
• Solidarity and mutual support
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
- 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
“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 (the power of
organizing without organizations), p25.
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
What we stand for
What: after Autscape 2007
• AutreachBB
- Autreach discussion forum (Bulletin Board),
Europe wide, started by Selina Postgate
• Politics of Autism meeting
- organised by Roderick Cobley
- Larry Arnold, David Morris, Dinah Murray
- Speeches are online at
• AutreachIT
- pilot research projects in care homes
- supports “actions” (campaigning, consultation)
through collaborative website
Politics of Autism meeting
• Many people who came put their names
Some of those came to future meetings
Those who kept coming became
founder members of the London
Autistic Rights Movement (LARM)
• Audio recordings of meeting, and more
information about LARM, on the
Autreach website:
Changing awareness – progress
• Dealing with the media (case study 1)
• Creating and disseminating our own
video material (Posautive ,
Autreach/ASAN video project )
Reaching key decision makers in
government (case study 2)
Changing the focus of research
Changing the content of training
Case Study 1: Dealing with the media
Letters 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 on
Case Study 2: Key decision makers
POSTnote on Autism
• What is a POSTnote?
- ‘Parliamentary Office of Science and Technology’
briefing document for civil servants and MPs, etc.
• How did POSTnote involvement
- 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
POSTnote: what happened
• 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 on Autreach website
used throughout to coordinate work
(shared with researcher as well as
Making useful alliances
Identifying allies via shared
• 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
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)
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
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
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
Recognise hierarchies 
• Recognising hierarchies is part of what
is going on for most people much of the
In most hierarchies the inaccessible top
people depend a lot on input from below
Many organisations have quite detailed
descriptions of the positions people
Appropriate online services
for collaboration
How: Backpack websites
• Web-based application
• Share web pages instead of emailing
Track versions, changes, history
Make pages public to create visible
presence for group
Organizing tools: shared calendar,
newsroom, reminders
Psychological effect of revisable
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)
“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” ]
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 enemy
More from “A group is its own worst enemy”
[Clay Shirky]
“ 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
Autreach Network
• A network of autonomous groups,
adopting some basic principles
(join and help to define those
Not a group or organisation (even an
“umbrella” organisation)
AutreachIT, London ARM, AutreachBB
Website(s) provided by AutreachIT
Where next?
• What happens now?
- Autreach/ASAN video project
(deadline 1st September)
• New groups?
- A real Autreach Network?
(“Autreach <your name here>”)
- making useful alliances...
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
• For details see
( i = link to web page)