The basis of people's lives with one another is twofold, and it is one--the wish of each person to be confirmed as what each person is, even as what that person can become; and the innate capacity in each person to confirm others in this way. That this capacity lies so immeasurably fallow constitutes the real weakness and questionableness of the human race; actual humanity exists only where this capacity unfold.-Martin Buber
Three kinds of change, occurring at different scales, shape the
opportunities for people with substantial disabilities to
participate in unfolding the capacity for mutual confirmation which
Buber finds at the root of our common life. Declarations of social
policy, such as the Canadian Constitution's Charter of Rights and
Freedoms and the Americans with Disabilities Act, reflect a new
awareness of the rights (and political influence) of people with
disabilities and their families by forbidding discrimination on the
basis of disability. Services to people with substantial
disabilities gradually shift attention and investment away from
congregate services. So small but growing and visible numbers of
people with substantial disabilities live in ordinary housing, have
support for ordinary employment, and attend ordinary schools. At
the smallest scale are the efforts that concern this paper. This
kind of change involves people learning together how to build
community across the imposed social barriers that separate people
with substantial disabilities from other people.
Each of these changes serves as a platform for further change by
revealing how much more must be done before people with substantial
disabilities take their rightful place as citizens. Even where
they are in force, declarations of rights serve as much to expose
contradictions with other policies, and conflicts with other
political interests, as they do to stimulate habitual regard for
the dignity of people with disabilities. The successes of people
with substantial disabilities in living, working, and learning in
ordinary places increase dissatisfaction at the contrast between
their situation and the far less satisfactory conditions still
imposed on many people who remain segregated and controlled by the
service programs they rely on. These successes also yield
disappointment because establishing people in typical settings
seldom proves sufficient to support full and valued lives. More
and more people who have worked hard for service reform nod a bit
sadly when someone observes that people with disabilities are in
communities without yet belonging to communities. Work to build
community remains very small in scope, with many more people
debating it than people working to learn how to do it.
In particular, this chapter presents some of what we have learned
by listening to the stories of people who have made important
changes in their lives by working together. Our method for
learning is simple: we locate people with substantial disabilities
who have been involved in an important change, ask involved people
to tell us their stories of how the change happened, invite their
reflections on what was most important in making the change, re-
read the stories through different theoretical lenses, and,
finally, re-tell the story and ask the original story tellers to
correct or extend our account of the changes they have made.
Clearly this method does not produce singular techniques or manuals
of procedure for community building. Instead, it offers multiple
ways to conceive action. (For complimentary, but different, reading
of the lessons in some of these same stories see Mount, 1991;
O'Brien & Lyle O'Brien, 1993; O'Brien and Lyle O'Brien, 1992).
The changes we have learned from include: establishing adequate
support for family life; moving from an institution, medical
hospital, nursing home, or group residence into one's own home;
moving from one's family's home to a home of one's own; getting a
job in an ordinary community workplace; and attending primary,
secondary, or tertiary school as a member of ordinary classes.
Because all of the people we learned from have substantial
disabilities, these changes have each required negotiating entry
into new settings and new roles, usually as the first person with
a substantial disability to do so; arranging adequate systems of
personal assistance; acquiring appropriate technical aids and
devices; and finding adequate funding.
These important personal changes have additional significance
because none of them resulted from the routine operation of the
human service programs available to the people involved. While
people who work in services often play an important role in these
stories of change, their contributions lie well outside their job
descriptions and often challenge their employer's expectations.
While money allocated for services usually contributes to making or
sustaining the change, people have always had to work to change the
established use of these funds, and sometimes have had to create
new agencies, or even new policies and laws to make the change they
seek.
Of course, these are not the only possible stories of community
building. Some service agencies, and a few authorities responsible
for service systems, have invested in learning how to routinely
offer assistance in ways that build community. But the changes we
want to learn from here take service system resources into a
different social space, a social space created around and with a
particular person, and among people who discover new commitments
and new ways to act through their shared effort. This context
reshapes the usual functions and processes of service in ways which
yield creative responses to common problems and important lessons
for service reformers.
A brief sketch of a story of positive change provides a basis for
a description of five types of person to person commitments, which
people involved in community building have found useful in
understanding and extending their efforts.
As Lisa faced yet another transfer to the "Behavioral Ward" of an
institution, a setting which has proven dangerous to Lisa in the
past, Gemma and Lisa found a committed assistant in John, an
official in the regional bureaucracy that oversees services to
people with disabilities. John decided that he wanted to respond
to the political pressure around Lisa by developing individualized
services for her. With Gemma's consent, John assigned Marilyn to
design and develop services for Lisa. In the ensuing eight years
Marilyn has proven herself as one of Lisa's strongest allies,
though her job and family circumstances have changed several
times.
Marilyn approached Lisa and Gemma with the image of a social
structure in mind, and image transmitted from the experience of
Judith Snow and her circle of friends as they developed individual
supports for Judith (Pearpoint, 1990). She says, "Once I would
have asked, `What can I bring to Lisa?' But, instead, I asked,
`Who can I bring to Lisa."...I introduced the idea to Gemma by
saying that I thought we needed more people..."(p. 3, emphasis in
original).
Gemma consented, but she remembers, "[Marilyn] described a circle
where Lisa would have people around her who'd care. I didn't think
it would ever happen. I thought she was asking too much of herself
and others. At first I was rather skeptical; I didn't think people
would come through with their commitments. I didn't believe a
support circle could happen-but it has!" (p. 4).
The support circle hasn't just happened. It developed initially
from Marilyn's invitations to people she knew. Then, as action
with and around Lisa grew, some people brought in others, like
Elinore (the first person Marilyn invited) who involved her husband
Charlie, and then her daughter Lynne, who later became a key paid
assistant to Lisa. As Marilyn continued to act outside Gemma's
expectations of a service worker, the circle grew stronger. Gemma
says, "...I began to trust Marilyn because I saw her as a leader-
she's determined and what she sets out to do she does. It's
amazing to me that she brought in her friends." (5).
Since it's beginning, the circle has offered Lisa's brothers,
Michael and Antosh, a specific focus for their desire to anchor
their sister's future. The circle's early work was difficult,
especially because no service providers were willing to offer
individualized supports, even though Lisa had access to substantial
amounts of funding. Michael says, "...The meetings were long, and
there were lots of frustrations... A lot of the professionals were
willing to listen and give advice, but few were willing to get
their hands dirty or commit fully." (p. 6). Antosh identifies the
continuing concern of those closest to Lisa, "I was afraid the
circle would break down, that it would be too much of a burden."
(6).
Dealing over time with the complexities of developing and
maintaining good assistance for Lisa, as well as the challenge of
understanding and clarifying Lisa's interests and capacities and
finding opportunities for her, has been challenging. So, the
circle's growth has not been smooth nor has its membership been
stable. When an agency agreed to organize services for Lisa, many
circle members assumed that the problem was solved and became less
active. At one point, only three people were regularly
involved.
However, as continuing problems clarified the fact that
individualized services for Lisa posed too big a challenge to the
culture of the only existing agency willing to serve her, the
circle generated and enlarged. Members of Lisa's circle joined
with several families whose dreams and desires outstripped the
service system's capacity. They formed an association which has
created a service agency called New Frontiers, whose mission is to
assist a small number of people with substantial disabilities as
they build their local community.
After eight years, 28 people identify themselves as members of
Lisa's circle. Some were introduced to Lisa by other circle
members. Some initially met Lisa when they were hired to work for
her as assistants (though many of Lisa's assistants have not
identified themselves as members of the circle). Some have come to
her through the shared work of creating New Frontiers.
Circle members do much more than have planning meetings, and some
members rarely attend the meetings that do occur. But each member
identifies her or himself with Lisa and with the circle, each
shares some mutually interesting activities with Lisa, and all have
shown their willingness to act together to protect Lisa and promote
a positive future for her. Lisa benefits from the many different
ways in which people have come to know her, even though these
differences have sometimes caused conflicts among circle
members.
The circle benefits each of its members, though it holds Lisa at
its center. The circle manifests social concern to reshape its
member's community; it is not an expression of pity for disability.
All members can identify benefits from membership, including:
discovering new skills, making friends, overcoming stereotypes,
joining in enjoyable social activities, gaining confidence in
ability to problem solve, finding opportunities to act vigorously
on what seems right, finding support in personal hard times, and
creating confirmation of hope that people can work together to make
a real difference.
With the support of the circle and the assistance of New Frontiers,
Lisa's life in her home is gradually becoming more stable overall,
though some of her behavioral challenges persist, and she remains
unable to use words to communicate. Lisa explores the places and
activities available in her city. She regularly volunteers her
time to Meals on Wheels and to a local community center. She
particularly enjoys many of the meals and parties that embody the
life of the circle. Through the shared work that builds and
sustains the circle, she and her mother have gained many allies
concerned for her future. One of them, Jennifer says, "It's one
thing to think about how far Lisa has come--I think more about
where Lisa can go." (p. 34)
Herb, a psychologist who has visited Lisa and encouraged her
circle, says, "...whenever I have been to Lisa's home to talked to
the people who are in her circle, I have been struck by how much
they live her and one another. Not in the everything-is-beautiful
kind of way that has a hard time with conflict, but in the
enduring, patient, and respectful way we all need, to get to the
next and better version of ourselves." (20).
This confusion shows up in many ways, for examples in debates about
whether or not paid staff can be friends and advocates for people
with substantial disabilities. Many who say yes seem to think
that staff can presume that their clients will see them as friends
and advocates, despite fundamental inequalities in power, and
professional norms that dictate objectivity and detachment. Some,
who have glimpsed the bureaucratic machinery beneath the mask of
professionalized caring, say no, paid people can't be friends.
Neither those who say yes or nor those who say no seem to have
adequate terms to describe the relationships that have developed
between Lisa and Gemma and some paid staff people. Finding new
terms outside the usual administrative vocabulary allows people to
discuss some of the distinctions that emerge when people work
together to make change. New words offer one way to help people
make sense of this different way of acting.
Community building is an intentional move into a new space; if
Marilyn had chosen to focus on what services to give Lisa rather
than on who to bring into her life, the support circle would not
exist. Far more an improvisation in response to changing
circumstances than a carefully choreographed routine, community
building needs ways of identifying the kinds of actions that can
make positive differences to people's shared future. Invitation
lies at the heart of community building and shapes the responses
people offer. Searching for ways to communicate the different
kinds of contributions that people can make to one another offers
those who make invitations a vocabulary for considering their
options.
As we have considered the differences between stories, like Lisa's,
that include positive changes and stories that do not, as yet,
include much change, we have labeled five different person to
person commitments, which are identified on the figure below. In
stories of change, we can usually identify people enacting there
different commitments. In stories where no change has occurred,
the absence of people making one or more of these commitments is
notable. This does not mean that no change can happen without each
commitment, only that significant change will require even more
effort in the absence of one or more of them. When we describe
these commitments to people who appear to display them, though they
sometimes say that the words we have chosen seem a bit strange.
So these descriptions have heuristic rather than predictive or
technical value.
The notion of commitment involves accepting a particular kinds of
responsibility by acting on it. One person can share more than one
commitment with a person with a substantial disability.
Commitment implies freedom; the roles assigned to people by
administrative structures do not contain, nor can they compel, any
of these commitments. Some may be both a paid staff person and an
ally, as Marilyn has been for Lisa. But John, as Marilyn's boss,
can not assign her to be Lisa's ally, though John could, as a
person Marilyn respects because of his willingness to take personal
risks on Lisa's behalf, invite and encourage her to consider
alliance. Commitments are not disability specific; they seem
necessary in any effort to building community. People with
disabilities can, of course, enact any of the commitments, just as
people without disabilities can. These commitments are a matter of
one's heart's desire, not of status.
People who commit to anchor another person live that person and are
concerned with that's person's well being over time. They share
their life with the person and act as a source of continuity for
the person through the ups and downs of life; they have custody of
important memories. They stand with the person in difficult times.
They act vigorously to protect the person from harm. They seek
ways to reconcile with the person when the person has offended them
or when they have fallen out with the person. They want to
continually grow in knowledge of the person, and especially of the
person's gift and capacities, even though this may be difficult
when it challenges habitual patterns of expectations. They work to
identify and create opportunities for the person. The other person
figures in their decision's about their lives; when facing an
important choice they will not need to be reminded of their
importance to the person. They actively assist the person to
expand relationships with others who may come to care.
People's family members may be anchors, as Gemma is for Lisa. But
some family members can be overwhelmed by their own circumstances
or by fear by stereotyped thinking and be unable to anchor their
son or daughter or brother or sister or spouse in making the kind
of change that builds community. Unrelated people-including paid
staff-can find themselves loving a person with a substantial
disability in this way, though this can be confusing and difficult
for others to understand and can create significant conflicts for
the staff person who is an anchor.
People who commit themselves to be allies share their time and
resources with the person to make a jointly meaningful change.
They offer practical help, assist with scheming and problem
solving, lend experience and skills, and offer useful information.
They make contacts for one another and bring others into the
alliance. They usually enjoy the person's company in some mutual
interest, and they often like to share food and drink. Because
allies know the person's in distinct ways, they come to have
important knowledge of the person's interest and capacities. On
the basis of this information, and their knowledge of community
opportunities, they can join the person and the person's anchors to
define a future work working towards. Allies may be linked more
closely to the person than they are to one another. If a shared
project calls on them to work together, allies may have to deal
with their differences with one another and be willing to negotiate
conflicts instead of just walking away.
A person's allies may choose to consciously form a circle, as
Lisa's have, or their relationship may be more like separate spokes
related to the person, with no rim linking them together. Because
many people with substantial disabilities have been isolated and
separated by prejudiced treatment, it may be necessary to purposely
invite people to consider forming alliances with them around an
important change, as Marilyn did when she formed a circle around
developing individualized supports for Lisa.
Assistance provides the help a person requires to deal with effects
of disability so that they contribute their gifts to the change
effort. Service managers offer assistance, as John did for Lisa,
when they allocate funds with the flexibility to allow involved
people design and re-design a system of everyday personal
assistance. Personal assistants provide necessary help with daily
activities, from eating and dressing and housework to working and
participating in community activities. Professional assistants
offer specialized help to deal with difficulties in movement or
communication, or learning, or problem solving, or dealing with
problematic behaviors or feelings.
The particular commitment of assistance is to offer necessary help,
in a respectful, creative, and flexible way, without taking over
the persons life. The art is to assist without intruding between
the person and other people or activities the person wants to be
involved with. The gift of assistance is to resonate with and thus
to amplify the person's bodily and mental contributions to the
change effort.
Assistants can, or course, become deeply involved with the people
they help; many of Lisa's allies have worked for her. But the
commitment to the paradox of assisting without intruding or
controlling remains a unique contribution, and it is important that
assistants be clear when it is time for them to make it. (Adler,
1993).
Some people with substantial disabilities rely primarily on family
members for the help they need, particularly their mothers and
sisters. When publicly funded assistance fails to provide
alternatives to care by family members, the person's relationship
with caregivers can become deeply constraining for them all. When
necessary assistance is only available in settings that segregate
and control people, opportunities to make the kind of changes that
build community are very limited.
Associations are the social structure groups of people create to
further their interests. They may be structured formally or
informally. They may be focused on social change or on their
members' protection or enjoyment or person development or other
political objectives. They may be organized around the particular
interests of people with disabilities, as New Frontiers is, or they
may be organized around other community purposes, as the community
centre where Lisa volunteers is. People with substantial
disabilities have typically been excluded from the benefits and
responsibilities of association membership, so a great deal of
untapped energy can become available if a person's allies can
facilitate their membership in associations that can share and
shape the person's interests (see Kretzmann and McKnight,
1993).
Agendas organize political action to insure just and effective
public policies and their proper implementation. People with
substantial disabilities and their families and allies have often
joined political coalitions to work for such changes as: personal
assistance services and family support services under the control
of users or people close to them; inclusive schooling; necessary
assistance for individual employment; safe, accessible, and
affordable housing; safe, convenient, and accessible
transportation; access to adaptive technology and devices; and
adequate cash income without stigma. The coalitions and actions
that form around agendas multiply the influence of people and their
circles.
People who share these five commitments and nurture them over time
are likely to create new ways to build and be a community. Lisa
and the support circle around her work slowly and modestly to
increase the capacity of people in her city to deal creatively with
diversity, to decide justly when prejudice threatens participation
in the benefits and responsibilities of citizenship, and to make
good use of the public funds appropriated to the service of people
with disabilities. Lisa and her allies have contributed direction
and hard work to the creation of an innovative agency to assist
them in defining and making their contribution to common life.
They have claimed a new space for shared action, and thereby
expanded possibilities for themselves and for other people with
substantial disabilities.
When people with substantial disabilities and their friends work
together to build community, they can open a social space in which
marginalized people can join people who are insiders to penetrate
delusions about disability and uncover shared meaning through joint
projects. Within this social space, people whose lives may be
dominated by professional definitions of disability can find some
relief, and even occasional liberation, from the burdens of full
time clienthood. Within this social space, people can unfold the
human capacity for confirmation of one another as each is, and as
each can become.
Judith Snow (1990), whose emancipation from a chronic care facility
occurred through her shared life and work with a circle of support,
reflected on the contribution outsiders (who she terms "outcasts"
below) can make to community building simply from bringing the
experience of being an outsider to ordinary people ("the
ordinaries", as she calls them).
The gift of surviving and growing through change belongs to the outcast...Living on the edge of chaos changes the people who survive it. You become very aware of the value of things ordinary citizens take for granted; things like having your opinion listened to, having a chance to make a mistake, to be forgiven and to have a chance to try again; things like having friends and family who celebrate holidays with you and who will tell their friends that you are looking for a job. Living on the margins either burns you out and kills you, or it turns you into a dreamer, someone who really knows what sort of change will help and who can just about taste it; someone who is prepared to do anything to bring about change. If these dreamers are liberated, if they are brought back into the arms of society, they become the architects of the new community; a community that has a new capacity to support everyone's needs and interactions. But how can this really be, especially since these dreamers still have the characteristics that marked them as outcasts in the first place? They will still lack good judgment, or find it hard to learn to read, or be disabled. Solving this problem is critical, for otherwise the outcasts and the ordinaries are very good at maintaining an invisible wall between their two worlds (pp. 126-127).
She goes on to say that this invisible wall can only be breached by
long term willingness to build new kinds of relationships between
those who are reaching out and those who are reaching in. In the
five commitments, we have tried to describe the terms of those new
relationships.
Awareness of each of these disagreements and discomforts clarifies
the work of community building. The economic and administrative
forces that shape so much of modern life make it necessary to
undertake conscious efforts to claim common spaces and to build
within them. And conscious efforts can be and feel halting,
tentative, uncertain, and uncomfortable. Recognizing and honoring
human diversity and enriching joint action with differing gifts
presents so large a challenge that no one who sets out to build
community will get far before encountering its threats and
frustrations. Efforts to build community that overcome the
invisible walls between outsiders and ordinaries must be modest in
scale and in expectation.
This kind of building is nothing like the massive imposition of
individual will on masses of people through architectural
technology which Ayn Rand characterizes in The Fountainhead. It is
much more like the kind of building celebrated by Bernard Rudofsky
(1964) in Architecture without Architects. As Rudofsky beautifully
illustrates, this kind of building is vernacular rather than
formal; commonly practiced by in habitants rather than sketched and
controlled by professional experts who will not live within the
results; rooted in a particular landscape rather than imposed upon
it; purposely created for human comfort rather than scaled for mass
consumption; and built in stages as use and resources expand
rather than master planned and financed at high cost. He notes two
inspiring qualities of successful vernacular builders; they work to
make oases of public spaces, and, "they do not hesitate to seek out
the most complicated configurations in the landscape [often
choosing] veritable eyries for their building sites..." (p.
4.).
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