1.
Helping people with disabilities
Form meaningful relationships
Aaron Johannes
aaron@spectrumsociety.org

2.
Intro / housekeeping
• Parking lot
• References and documents
• Google “imagineacircle” and “diigo” find
renegotiating reciprocity
• aaron@spectrumsociety.org
• Workbook – feel free to use anything, just
attribute it back to www.imagineacircle.com
• Contact list and Prize! 
• Twitter #imagineacircle

3.
intro

4.
Every job there is…
• Support 100+ people over 27 years
• Every job
• I went back to school because I wanted some
answers…

5.
Spectrum Consulting. Collaborative:
Learning, Research, Press
• To increase influence of
person centred,
individualized options
• To start a conversation
about agencies and
person centred
practices

6.
Small Projects

7.
Small Projects

8.
B.C. Family Support Institute
Optimal Planning Project
with David Wetherow

9.
Small changes:
communication that invited
partnership and input

10.
I can’t write it but I can draw it

11.
Our Question Together
Why does it matter whether we can support
people with disabilities to have relationships
and be part of their communities?

12.
WHY DO RELATIONSHIPS
MATTER? (workbook: 5 reasons)

13.
What sorts of people should be included… and how?
Introducing the BMX model of inclusion
Erica S. McFadden and Judith A. Snow
Participation and presence. O’Brien (1987) describes community
presence as “the sharing of the ordinary places that define community
life” (p.179), but this simple definition is deceptive. There is a
continuum of three notions of presence for an individual that
determines the level of inclusion: “being physically present” in a
community or at an event; “having presence;” or “actively
participating” (Smull & Sanderson, 2001, p. 139). These last two
notions of community presence introduce quality of relationships and
inter-connectedness (Cummins & Lau, 2003). Being physically present
suggests that individuals can often be visitors, and not really part of,
community life or have meaningful social contact with others (Ager et
al., 2001; Britten, 2001; Smull & Sanderson; Verdonschot, deWitte,
Reichrath, Buntix, Curfs, 2009).

14.
Research into Support Networks:
The numbers changed…

15.
Story of the red haired girl

16.
“We are not welcome there”
• “This might work for your people
but our people are harder”
• “Our community is less
welcoming”
• “Our agency doesn’t want to do
this”
• “We are not allowed to take
risks”
• “We go to the Friendship Centre
every Weds for soup and
bannock. No one talks to us. We
have to go because the Social
Worker says we have to access
culturally appropriate activities.
When we get there, they start
putting all the chairs up on the
tables and sweeping up.”
• Blind, non-verbal, noisy, drooling,
in wheelchairs.
• They arrive at 2:45.
• Hours: 11:30 – 3.
• A table of regulars and the
workers at front; they sit in the
back.
• Staff wearing uniforms.
• HUGE bibs, towels.
• Didn’t talk to anyone.
• Didn’t need anyone.
• Had been going for three years.
• Manager had never gone with
them.

17.
Albert
Facilitating belonging

18.
Albert
Facilitating belonging
• “I’m not sure why they
brought you in, this is
hopeless. No one will ever
want anything to do with him.”
• “I’ll just spend some time with
him and we’ll find out what he
likes.”
• “He doesn’t like anything.”
• “Watch out for…”
• Non-verbal, wheelchair,
problematic behaviors, funny
loud noises.
• Coffee on saturdays at 10:30
a.m.
• Late one day, got there at 11
• Volunteer firemen
• Physical cues
• Changed the schedule
• Called him by name,
introduced him
• Got closer, found reasons to
engage
• Started inventing reasons why
she had to leave
• Reasons to need them…

19.
Facilitating belonging
• “Albert is wondering can you pass
the sugar?”
• “Oh, I was going to get a bun and
I forgot – is it okay if Albert joins
you for a moment? I’ll be right
back?” (Chats with staff)
• “Darn – Albert and I were looking
forward to chatting but I have to
take this – would it be an
imposition…? I’ll be right back.”
• “Oh I’m not sure if you noticed
but Albert just nodded at you
three times in a row and that
means he’s happy to see you!”
• “Hey guys, do you mind if we join
you?”
• “I have this challenge – I wonder
if I can run it by you and maybe
you have some ideas about what I
could do next because I need
help.”
• “So my job is to help Albert make
connections and be included –
and I’ve spent a year with him
and we have a great time but my
boss says he needs to be involved
in something… do you have any
ideas?”

20.
Back to:
“We are not welcome there.”
• We go to the Friendship Centre
every Weds for soup and
bannock. No one talks to us. We
have to go because the Social
Worker says we have to access
culturally appropriate activities.
When we get there, they start
putting all the chairs up on the
tables and sweeping up.
• Blind, non-verbal, noisy, drooling,
in wheelchairs.
• They arrive at 2:45.
• Hours: 11:30 – 3.
• A table of regulars and the
workers at front; they sit in the
back.
• Staff wearing uniforms.
• HUGE bibs, towels.
• Didn’t talk to anyone.
• Didn’t need anyone.
• Had been going for three years.
• Manager had never gone with
them.

21.
Setting Conditions (“events”)
• Manager in an
overwhelmed fear state
• Staff perceived their
sense of self worth from
an institutional viewpoint
– Orientation
– Procedures
• We need an hour to change
• Measured food portions
– Evaluation
• Manager and staff:
powerless
• No values training in 27
years
• LOTS of technical training
• No mentorship
• Isolation
• Top down decisions
imposed on them
• “We know the name of
the dog next door…”

22.
Connected with aboriginal
Social Worker
• Introduced to Friendship Centre
staff
• Changed the time of their visit
• Started helping
• Wore street clothes
• Rethought bibs etc.
• One was long lost 3rd cousin
• Got introduced to other family
• Reconnected with tribe
• A year later invited to Pow Wow,
stayed all week
• Cousins came to planning
meeting
• Social Worker: they still hate you
but it’s a good thing 

23.
Chester Finn
“They get to know you.
And, you know, they can’t
help but be involved.”
Berkeley University, Oral
Histories of Self Advocate
Leaders

24.
Moving from a delusion of introduction to
statements & assumptions of belonging
“Who do you know?”

25.
Moving from a delusion of introduction to
statements & assumptions of belonging

26.
Skating together:
incongruent mission and protocols

27.
Incongruence:
asking what’s wanted…
PARENTS:
A circle of friends
Watching over him
Including him in activities
Expanding his range of
things he likes
Available in emergencies
Playing cards
Hiking
Camping
PERSON:
“I want someone to go
hiking with on Thursday
afternoons, who will not
talk…”
Turned into going for
coffee
Going to movies
Going for dinner
Going to church
Coming to planning
meetings

28.
The goal might be way more simple
than we think…

29.
How hard is it to make friends?

30.
Prom Dress

31.
Amanda and limo

32.
Amanda and cupcakes

33.
Amanda and cupcakes

34.
Pay it forward: Fort St. John

35.
2nd Anniversary

36.
WORKBOOK: THANKS!

37.
Slideshare “Out of the Day Program”

38.
Part 2: ROLE OF SUPPORTS

39.
Which do you choose?

40.
“You bust it we fix it”
“If your pipes ain’t flowing and your air
ain’t blowing call us”

41.
Mind Maps

42.
Who are we?

43.
Rebels

44.
What would your business card look like?

45.
• Research on support
networks for people with
disabilities changed
significantly in the 80s…
• Why do you think?
• Paid folks are often at the
edge of the circle –
economic reciprocity…
• Christmas story…
• Socialised to denigration.

46.
“A person’s needs are best met by
people whose needs are met.”
Jean Clark

47.
wordles

48.
A Word-Cloud takes the most frequent word choices and makes them
appear bigger: it’s a way to tell graphically what matters.

49.
“Progress: Limited or Unlimited”
1958 Minnesota Planning Documents for Transitions to
Community from Institutions.

50.
Michael Kendrick:
“Life Giving Values”

51.
John Lord:
“Principles of the New Story”

52.
David Pitonyak:
“Who Holds Your Story?”

53.
Aaron Johannes:
“Aspects of Self-Governance: Three Stories of Women
With Disabilities”

54.
3 vision statements from organizations

55.
3 Public Job Postings from Anonymous
Agencies in B.C.

56.
Employee Code of Conduct

57.
Community Support Worker
Job Description

58.
wordles

59.
So, what is your role?
Training for independence
Health and safety
Build relationships
Documentation
Manage the budget
Community connector
Be a positive role model
Advocacy
Companionship
Personal care
Job training
Housekeeping
Behavior management
Liaise with professionals
Person centred planning
Be a friend
Be professional
Family support
Maintain CARF standards

60.
How does it feel to have a gift & find a
community where it’s appreciated? Does
this happen at work?

61.
Solution Circles

62.
Albert’s story

63.
Instructional Strategies
The dictionary defines instruction as a “precept” (the teaching of
something known about our culture), as “direction calling for
compliance,” as “an outline or manual of technical procedure,” and
“the action, practice, or profession of teaching.” Often parents,
community support workers, coaches, peers, managers and others find
themselves with instructional responsibilities – to teach someone to
cook independently, or cross the street, or engage in a social
conversation, yet don’t have the information they need about how to
think through goals and outcomes and break things down into
teachable bits in ways that work for the particular individual. The next
step in community based instruction is teaching for independence, so
that we can prompt less and people can acquire mastery and self-
esteem. We can gather many concrete examples as well as walking
through logical progressions of how someone learns a skillset and how
the instructor removes herself from the interaction.

64.
EMBEDDING PRACTICES

65.
"[I]t is from the relational matrix that the very
possibility of individual sense making comes into
being, and without the existence of ongoing
relationship communicative acts lose their
status as communication."
Kenneth Gergen –
'Dialogue: Life and Death of the Organization’
Resources: www.taosinstitute.net

66.
Starbucks Guy
“We are now furiously
improvising our way through
a situations for which there
is no script and if you are an
amazing jazz musician then
improv is great, but if you’re
like the rest of us it can kind
of feel like a crisis.”
Jennifer Senior,
“For Parents, Happiness is a
very High Bar.”
(TEDtalks, youtube)

67.
“Without clarity, people will start making up stuff…
often the stuff they make up has to do with them not
getting ‘into trouble’”

68.
How do Adults learn?
• Staff • Folks we support

69.
Concierge Learning – Jane Hart

70.
“Have you ever really had a teacher?
One who saw you as a raw but precious thing,
a jewel that, with wisdom,
could be polished to a proud shine?”
Mitch Albom

71.
How do we teach?
Paulo Freire and co-learning

72.
“Power gets the job: Priming power
improves interview outcomes.” Lammersa,
Duboisb, Ruckerc, Galinskyd
PRIMING: think of a time
When you had power.
No “priming” = 47%
Priming = 68%
Low in power = 26%

73.
We are always somewhere
on the steps…

74.
Liz

75.
Captain Grace Hopper

76.
Small and Viral Changes
• Small projects
• Small changes

77.
Planning = 99.59% success
• WORKBOOK
• What changes will you make / manifest
– To agency?
– To agency leaders?
– To family leaders?
– To staff?
– To folks supported?

78.
Cousin Dan the Handy-man

79.
WORKBOOK:
HOW WILL WE BE TOGETHER?

80.
An open reading of Waddie Welcome
and the Beloved Community

81.
How might we do this?

82.
Winterbourne. June 2011
“We suggest a redefinition of the
role of the service and support
organizations. Rather than solely
providing services and support,
organizations serve as bridges
between people and community
supports. For this reason, the
concepts and research findings
associated with social capital
contribute to a reformulation of
organizational role.”
• Nunkoosing, Karl and Haydon-
Laurelut, Mark. “The Relational
Basis of Empowerment.” Eds: John
O’Brien and Simon Duffy. The
Centre for Welfare Reform in
association with the University of
Portsmouth, The Need for Roots
series. July 2013.

83.
Making a Plan
• 3 Insights • 3 Intentions

84.
WORKBOOK:
Belonging and Community Zine

85.
Unexpected gifts

86.
Questions?