Self-Determination with Integrity
Main Entry: in·teg·ri·ty
Etymology: Middle English integrite, from Middle French & Latin;
Middle French integrité, from Latin integritat-, integritas, from
integr-, integer entire
Date: 14th century
1 : firm adherence to a code of especially moral or artistic
values : INCORRUPTIBILITY
2 : an unimpaired condition : SOUNDNESS
3 : the quality or state of being complete or undivided :
An Evolving Pattern Language
The movement towards
Self-Determination signals a major advance in understanding and practice in
‘disability services’. As we
celebrate this advance, it may be an especially important time to remember our
history and consider what we will carry into the future.
For 200 years, the language of
asylum, protection and special treatment supported a largely unchallenged
pattern of segregation and institutionalization of people with disabilities. For 200 years, we reflexively and systematically separated
people from family and community life and confined them in
segregated settings. Then in the
mid 1960’s, Burton Blatt and other advocates brought us face to face with the
suffering engendered by the institutional ‘solution.’
the late 1960's, the field of mental health, driven by a portrayal of institutions as anathema,
lured by the prospect of cost containment, and encouraged by the promise of new
psychotropic drugs, adopted the overly simplistic language of
‘deinstitutionalization’ and embarked on a process of abandonment that haunts
us to this day. In the field of
developmental disabilities, early attempts at ‘deinstitutionalization’ focused
on group homes and sheltered workshops - a service pattern that has sometimes been described as
“breaking pieces off of the institution and parachuting them into the stage
setting of the community.”
the early 1970’s, Wolf Wolfensberger, Ed Roberts, and other leaders brought us
face to face with the poverty of these solutions.
The new ‘pattern languages’ of Normalization
(now Social Role Valorization) and Independent Living began to emerge, and for two decades helped to
shape our perceptions and refine our practices.
As they struggled with the limitations of segregated ‘community’
programs, parents and allied professionals in the field of developmental
disabilities began to envision new directions and began leading the way towards
inclusive education, supported employment, family support, and innovative
inclusive housing options.
In the 1980’s and 90’s,
pioneers such as Jack Pearpoint and Marsha Forest, John McKnight, John McGee,
Herb Lovett, Judith Snow, John O’Brien, Marc Gold, Jean Vanier and others
began creating pattern languages that were richer, more adaptive and more
complete. ‘Circles of support’, inclusion, diversity, gifts and
contributions, personal futures planning, mobilizing community capacity,
invitation, companionship, community-building, hospitality, citizen advocacy,
self-advocacy, covenant relationships, life-sharing, Gentle Teaching, and
asset-based community development all became part of a new working language
shared by allied professionals, men and women with disabilities, family members, and
As the field moved forward
with an enhanced language and a richer vision, people began to discover and
forge new structures that facilitated collaboration, invited new forms of
social engagement, and reversed some long-standing patterns of control:
‘Home of Your Own’ initiatives, co-housing, cooperative, and
Microboard initiatives, independent planning, individualized funding, and
self-determination all took their place in the working language and
generated a wide array of experiments and models.
Two Steps Forward, One Step Back
As positive as these
developments were, practitioners sometimes made the mistake of leaving behind
important elements of the complete pattern.
We backed ourselves into dead-ends, struggled with confusing
terminologies and a lack of definition (think about the confusion over mainstreaming),
moved forward with single-path solutions, and neglected some important lessons
from the past. The complete pattern
sometimes became lost in the rush of excitement over new terms, new forms, and
Just as the overly simplistic
language of ‘deinstitutionalization’ failed to convey the importance of
building strong patterns of support in the community, the language of 'independence'
and 'empowerment' sometimes failed to convey the importance of
interdependence, contribution and engagement.
In some instances (especially in the field of services to people with
developmental disabilities) an overly simplistic approach to independent
living led to a lack of essential supports and social isolation. Direction and wholeness – integrity – receded.
Self-Determination Out of Context
When we carry the
larger pattern implicitly, rather than remembering to make it explicit, we may
be making the assumption that these desirable directions will automatically be
understood and incorporated into daily practice.
This is not always a safe assumption. Being reluctant to ‘impose’
values or direction, some proponents of Self-Determination may lose sight of the
importance of supporting companionship, connection, and contribution.
We are beginning to see some
indications that the bare language of Self-Determination –
choice, freedom, and responsibility” – may fail to convey the importance of
engagement, companionship, contribution, and affiliation.
On recent occasions we have heard new practitioners define their roles
within Self-Determination initiatives as simply “helping people with
disabilities do what they want.” On
the surface, these practitioners seem to be working with the assumption that
‘finally having control’ is a sufficient precondition for a good life.
In practice, we have sometimes seen this translate into personal
isolation or into an endless round of disconnected ‘consumer activities’.
Self-Determination with Integrity
This doesn’t have to be the
case. A few months ago, we listened as a service coordinator told
the story of a man who had lived a tormented life in an institution.
He had gained what Herb Lovett used to call a ‘severe reputation’ for
combativeness and challenging behaviour. Under
the auspices of a Self-Determination pilot project, he was now living in his own
home with the support of resourceful companions and assistants, was contributing
to his community, and he was happy.
The combat had ended; but one
thing was clear: this didn’t just happen by writing a check.
Indeed, this young man now had much more power to express his life’s
direction, and he was enjoying a degree of respect that had long been missing in
his life. But the overall direction
was something that emerged in the context of collective wisdom, companionship,
perspective and encouragement.
Our friend the service
coordinator had been this man’s champion for many years, and now with the
flexibility that was afforded by a Self-Determination project, he could fully
offer – as a supportive partner – his creativity, his ability to envision a
richer life, his skill at inviting and supporting connections, and his sense of
a positive, possible future. Money
and self-determination was an important condition, but this man’s championing
played an important role.
Balancing Respectful Listening and Facilitation
In a recent workshop, a leader
asked, “What are the qualities of a good facilitator?”
One participant said, “A good facilitator doesn’t control the
direction, but she does ask important questions.”
John McKnight’s pattern for
Asset-Based Community Development, PATH and related futures planning processes
all involve strategic questioning and engagement.
They serve as guides for questioning, listening, commitment building,
community building, and effectively conveying a new vision.
I’ve Known Rivers: Lives
of loss and liberation, Sarah Lawrence-Lightfoot reflects on the role of the
I listen to these extraordinary women and men tell their life stories, I play
many roles. I am a mirror that reflects back their pain, their fears, and their
victories. I am also the inquirer who asks the sometimes difficult questions,
who searches for evidence and patterns. I am the companion on the journey,
bringing my own story to the encounter, making possible an interpretive
collaboration. I am the audience who listens, laughs, weeps, and applauds. I am
the spider woman spinning their tales. Occasionally, I am a therapist who offers
catharsis, support, and challenge, and who keeps track of emotional minefields.
Most absorbing to me is the role of the human archaeologist who uncovers the
layers of mask and inhibition in search of a more authentic representation of
life experience. [Thanks to John O’Brien for bringing this writing
to our attention.]
There is direction in
the listening. The direction comes
from our willingness, as Judith Snow suggests, to help ‘carry the dream’ for
someone who is vulnerable. It comes
from remembering what constitutes a good life, and as our daughter says, it
sometimes involves ‘speaking your truth with authority’.
It means remembering our history and bringing the entire pattern
into the dialogue – indicating direction without imposing direction.
Working with soundness and completeness.
“No, You Have to Be Working There”
A while ago, we listened to a story told by
a mother whose son has a hearing impairment and who also struggles with a
significant movement disorder. Hearing
about his interest in music, people found it easy to think in terms of his
attending community concerts and Friday night jam sessions at a local bookstore.
At the outset, David had
difficulty expressing the possibility of a musical vocation, and he had no
connections in the music industry that would have made that a foreseeable
direction. Employment counselors
had assumed that his interest in music had little relevance to his prospects for
employment. But a friend in his
church congregation did have connections in the industry, and saw the
possibility that David’s interest in music might ‘take off’ in the
direction of employment.
might not have generated this new direction.
The possibility emerged because someone knew David well, understood how
much meaning music had for him, and understood the importance of capturing the
thread of his interest and moving in the direction of companionship and
contribution. David’s friend
seemed to have an innate sense of what it takes to create a good life.
He had the audacity to carry the dream for his friend, and he exercised
his own power of invitation. His
understanding of the value of moving from ‘activity’ to connection and
contribution led to a richer place.
Now David works for a company
that assembles the cable sets for the sound systems at large concerts.
Most of the time he works in a small factory, cutting cables and
installing terminals. He is fully
accepted as ‘one of the crew’. At
concert time, he helps with the final installation of complex sound systems.
David has become part of the working music scene in a large nearby urban
centre. Last month, as he was about
to leave on a three-day trip to help set up a rock concert in the city, his
mother (who was starting to feel like she was missing out on the fun) asked,
“Can I come?” Her son signed,
“No, Mom, you have to be working there.”
Some Final Reflections
As we work to support
self-determination, we’re walking a tightrope, and not for the first time –
remember ‘the dignity of risk’?
We need to learn to create fruitful conditions without imposing
conditions, and at the same time to not abandon what we’ve learned about the
value of invitation, connection, contribution and engagement. Supporting
self-determination with integrity involves deep listening.
It involves vulnerability – an openness to being changed ourselves.
It involves a commitment to honour our agreements, and a rigorous
commitment to reflect on our experience.
Self-Determination is a
vibrant, essential element in an expanding pattern language – an element that
has long been buried under the cloak of control and patronage – but it is not
a whole language. Individualized
funding and independent planning has added flexibility, respect and excitement
to the equation, but ultimately, moving towards a life that has integrity (in
the sense of completeness) involves being on the journey with allies who
can share a larger picture.
The traditional language of
the Nisga’a Nation of Northern British Columbia includes at least four
separate words for the idea of encouragement.
Every member of the community is reminded that part of their individual
responsibility is to offer all four forms of encouragement to friends and family
members. One of the words stands as
a reminder of the integrity of family and community life – a call to keep the
threads of community woven together. The
Nisga’a understand that we ‘determine’ our paths, but they are also always
mindful that we also discover our paths in the context of companionship,
© 2003 David and Faye Wetherow !