tash2011 creating user friendly materials with self advocates
DESCRIPTION
We did this presentation at TASH 2011 in Atlanta about our projects with self advocate partners, supporting them to translate and create materials that are meaningful to them. For more information, check out www.101friends.ca or www.spectrumpress.comTRANSCRIPT
Creating User-Friendly Materials With Self Advocates:
Partnerships And Processes
introductions
• Susan Stanfield, Director, Quality Assurance and Communications, [email protected]
• Shirlane Colban, [email protected]
– With Lanni Sulje, [email protected]
• Shelley Nessman, Consultant, Strategic Initiatives, Spectrum, [email protected]
• Aaron Johannes, Director, Research, Training and Devlepment, [email protected]
• Jule Hopkins, Community Living BC, Safeguards & Service Accountability [email protected] (sends her regrets and best wishes)
Introduction: CLBC, Safeguards Project and “Start with Hi” campaign
• Jule’s work in context
• The idea of Safeguards
• “Start with Hi” campaign
– Newspapers
– Website
– FB
– Website
• “icanbesafeonline”
tweet tweet & youtube
Our introduction to safeguards
• Provincial project
• Our interest in community based research
– In growing an alternative voice about possibilities
• Our Personal Support Networks report
– Developed curriculum
• Mixed groups
• Parents
• self advocates
• Staff, out of which came new presentation “the changing role of community supports”
Final report
Working in partnerships
Partners
• With government (Community Living B.C.)
• With self advocates
• With self advocate groups
• With families
• With other agencies
• With other leaders
• With other organizations outside “disabilty” services
Jule, Lorie President PFBC, Aaron
Translation into plain language and graphics with self advocates
• Text heavy documents
• Need for self advocate materials
– Also, if interdependence is the goal, materials that are accessible to new immigrants, people with lower literacy, people who think better with graphics
• People we might want to meet
Little Green Booklet: Met with three groups
• Focus group in Vancouver– worksheets
• Large group in Victoria (100 self advocates) – Small group work
• Provincial focus group– Feedback on last draft– Co-facilitated by David
Pitionyak• Learning how to be an
ambassador for the booklet
Ideas workgroup: Victoria
Focus Group: Vancouver
Rejected Drafts
Feedback Group (Ambassadors): from all around the province
Result: plain language, graphics, coil bound, pocket sized workbook
Shirlane Colban
• Introduction
• Involved in focus group
• Leader in her own life
• Teacher for us in how she’s developed her own network: an authority
• Arts background
• Honest thoughtful feedback
Shirlane: art
Shirlane: focus group
• How did you feel when you were asked to help out with this project?
shirlane
• One of the important reasons to have you in the first group is that you are known for having such a strong network. You had a lot to teach and share. Why is it important for you to have a network of friends and family?
Why do you think it was imporant to the group to make a book people could write in?
A workbook to write in
Why did the group want to have one person to focus on?
Focus on ONE person’s story
Buddy had already appeared in the original document
What Buddy did and who he did it with was a big discussion…
Network includes everyoneBuddy isn’t just acted on; he takes action
What about “We’re not just going bowling anymore!”?
Works in a bar Plays beach volleyball
www.shirlanecolban.com
Shelley: http://www.communitylivingbc.ca/policies-publications/publications/safeguards-publications/
Family stories about informal safeguards
Family stories about informal safeguards
www.icanbesafeonline.com
youtube
“Start with Hi” Self advocate FB conversations
Building Personal Support Networks: Barbarah and Zackery's Story
Building Personal Support Networks: Barbarah and Zackery's Story
Building Personal Support Networks: Barbarah and Zackery's Story
capacity collection site
• Came out of “Sharing the Power of Stories” workshops around the province
• Stories were being shared for the first time
• Stories were being lost
• People valued their stories
Aaron: Next steps for Spectrum Research Training and Development
Return to groups we’d met with to show them what we’d made together
Return to groups we’d met with to show them what we’d made together
Next steps for Spectrum Research, Training and Development
www.spectrumpress.com
“books and products by, with and for people with disabilities and those who care about them”
• A “social enterprise”
• Triple bottom line
– Use the strengths of those we support to strengthen our mission
– Make a profit
• Employ those we support
– Build the community(ies) we’re part of
The Goode Life: Memoirs of Disability Rights Activist Barb Goode
New poster set
Adventure stories by People You care About
• Problem solving
– Literacy support
– Emotional support
• Surprises
–People don’t think they’ve had adventures
New project
Inclusive research is happening all over the world
• CHECKING UP ON DES
An investigation into Implementation of Annual Health Checks for people with learning disabilities in Oxfordshire
• Jan Walmsley Associates Ltd with My Life My Choice
www.inclusiveresearch.net
Inclusive research
(Dr. Walmsley) http://janwalmsleyassociates.com/(Trinity College) www.tcd.ie/niid/research/irn/
Questions?
• To download a copy of this presentation go to www.spectrumpress.ca