Helping people with disabilities Form meaningful relationships

Aaron Johannesaaron@spectrumsociety.org

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

intro

Every job there is…

• Support 100+ people over 27 years

• Every job• I went back to school

because I wanted some answers…

Spectrum Consulting. Collaborative: Learning, Research, Press

• To increase influence of person centred, individualized options

• To start a conversation about agencies and person centred practices

• Worked with Michael Kendrick and David Pitonyak

Small Projects

Small Projects

B.C. Family Support InstituteOptimal Planning Project

with David Wetherow

Small changes: communication that invited partnership and

input

Small changes: communication that invited partnership and

input

I can’t write it but I can draw it

Training and Workshops

Our Question Together

Why does it matter whether we can support people with disabilities to have relationships and

be part of their communities?

WHY DO RELATIONSHIPS MATTER? (workbook: 5 reasons)

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).

Research into Support Networks: The numbers changed…

• i had a boss who called it " feed the bear " that way the bear wont eat you

• she always said the bear really liked stats

• any stats

Story of the red haired girl

“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.

AlbertFacilitating belonging

AlbertFacilitating 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…

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?”

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.

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…”

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

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

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

“Who do you know?”

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

Skating together:incongruent mission and protocols

Incongruence: asking what’s wanted…

PARENTS:A circle of friendsWatching over him Including him in activitiesExpanding his range of

things he likesAvailable in emergenciesPlaying cardsHiking Camping

PERSON: “I want someone to go

hiking with on Thursday afternoons, who will not talk…”Turned into going for coffeeGoing to moviesGoing for dinnerGoing to churchComing to planning

meetings

The goal might be way more simple than we think…

How hard is it to make friends?

Prom Dress

Amanda and limo

Amanda and cupcakes

Amanda and cupcakes

Pay it forward: Fort St. John

2nd Anniversary

WORKBOOK: THANKS!

Slideshare “Out of the Day Program”

Part 2: ROLE OF SUPPORTS

Which do you choose?

“You bust it we fix it”“If your pipes ain’t flowing and your air

ain’t blowing call us”

Mind Maps

Who are we?

Rebels

What would your business card look like?

• 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.

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

Jean Clark

wordles

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

“Progress: Limited or Unlimited” 1958 Minnesota Planning Documents for

Transitions to Community from Institutions.

Michael Kendrick: “Life Giving Values”

John Lord: “Principles of the New Story”

David Pitonyak:“Who Holds Your Story?”

Aaron Johannes: “Aspects of Self-Governance: Three Stories of Women With

Disabilities”

3 vision statements from organizations

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

Employee Code of Conduct

Community Support WorkerJob Description

wordles

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

“Through the blur, I wondered if I was alone or if other parents felt the same way I did - that

everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and

sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not

designed to beat outside the human body and yet, each child represented just that - a parent's heart bared, beating forever outside its chest.”

Debra Ginsberg

“Asset-Based Thinkers learn how to reactivate the special instinctive positive filters that we are all born with. Over the course of our lives, the positive filters have been overshadowed and shut down by deficit-based thinking. Asset-based Thinkers approach everyone they encounter with the spirit of acknowledgement and praise for what they have to offer. They see each individual as an asset and recognize that they are a work in progress, just like themselves. “Asset-Based Thinkers are relatively unaffected by the negative traits of others. They've learned to deflect the negativity, suspend judgment, and go beneath the surface to make contact with the positive motives that are fueling the negativity.”

Change the Way You See Everything, Kathryn Cramer and Hank Wasiak

Zev notes from books

How does it feel to have a gift & find a community where it’s appreciated? Does

this happen at work?

Solution Circles

Albert’s story

Instructional StrategiesThe 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.

EMBEDDING PRACTICES

"[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

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)

“Without clarity, people will start making up stuff… often the stuff they make up has to do with them not

getting ‘into trouble’”

How do Adults learn?

• Staff • Folks we support

Concierge Learning – Jane Hart

“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

How do we teach?Paulo Freire and co-learning

“Power gets the job: Priming power improves interview outcomes.” Lammersa,

Duboisb, Ruckerc, Galinskyd

PRIMING: think of a timeWhen you had power.

No “priming” = 47%Priming = 68%Low in power = 26%

We are always somewhere on the steps…

Liz

Captain Grace Hopper

Small and Viral Changes

• Small projects• Small changes

Planning = 99.59% success

• WORKBOOK• What changes will you make / manifest

– To agency?– To agency leaders?– To family leaders?– To staff?– To folks supported?

Cousin Dan the Handy-man

WORKBOOK: HOW WILL WE BE TOGETHER?

An open reading of Waddie Welcome and the Beloved Community

How might we do this?

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.

Making a Plan

• 3 Insights • 3 Intentions

WORKBOOK:Belonging and Community Zine

Unexpected gifts

Questions?