The development of this manual was funded in part through grant number 17673 under provisions of the Developmental
Disabilities Act of 1987 (P.L. 100-146). Content of this document does not necessarily reflect the position or policy of the Governor's Planning Council on Developmental Disabilities nor that of the State Planning Agency.
Additional copies of this publication maybe obtained from the Minnesota Governor's Planning Council on Developmental Disabilities, 300 Centennial Office Building, 658 Cedar Street, St. Paul, MN 55155,
612-296-4018.
The recommended citation of this publication is: Amado, A. N., Conklin, F., & Wells, J. (1990) Friends: A Manual for Connecting Persons with Disabilities and Community Members. St. Paul, Minnesota: Human Services Research and Development Center.
Cover Artwork by Jeph Lyon and Pat Lyon
Photographs by Houston County Group Homes Staff
Photographic Layout by Greg Lyon
Acknowledgments
We must profoundly thank all the persons who participated in the 1989-90 Friends Project. Twenty-three individuals with disabilities generously allowed us into their lives and relationships, and let us poke around and learn about how they would like friendship to be. Others who participated included families, who graciously allowed us to participate with their families and in their homes. Also thanks to the staff from day programs and schools, and several county case managers.
Ron Kaliszewski of the Minnesota Governor's Planning Council on Developmental Disabilities has been the "godfather" of this project, and we most gratefully appreciate his unremitting support. In addition, Colleen Wieck, Eric Rudrud, and Sharon Patten, through the Council, contributed to many of the ideas presented here.
Jane Wells provided the format and layout work for the manual (with more than a little help from her Macintosh), and Linda Albert did much of the typing. Thanks for an extraordinary job.
Lastly, this project would not have been possible without the participation of the staff of the following agencies. From our very first invitation to participate, through to the last group meeting, there has been no question of every single person's commitment to quality, joy, and friendship for people they serve. Through the ups and downs, successes and failed attempts, the staff never stopped in their commitment, continuing to generate new ideas and try new things. Also a special thanks to the administrators who generously committed their staff time for a year, in order to make a real difference in the critical area of relationships for the people served.
These administrators have agreed to act as resources for other agencies. They are available for questions or information about the issues involved in having staff support community relationships and friendships.
Peg Sundell
Adaptive Recreational Services
122 South Garden
New Ulm, MN 56073
507-354-8321
Dennis Theede
Houston County Group Homes
1700 Lancer Boulevard
La Crescent, MN 55947
507-895-8111
Don Priebe
Cooperating Community Programs
1365 Englewood Avenue
St. Paul, MN 55104
612-641-0041
Shelli McCue
Mains'l Services
6810 Hemlock Lane North
Maple Grove, MN 55369
612-424-1469
Jean Spencer
Community Residential Facility H
1708 N. Garden Street
New Ulm, MN 56073
507-359-7317
Brenda Wiger
MBW Company
513 Center Street
New Ulm, MN 56073
507-354-3808
Chantal McManus
Human Services Support Network, Inc.
357 Oneida Street
St. Paul, MN 55102
612-227-9117
Contents
Introduction, 1
A Different Role for Staff 2
Background of the Friends Project 2
About This Manual and About Friendship 4
Before You Begin 5
Plan.. .Think, Plan, Dream 9
Discovering the Person's Interests, Gifts, and Capacities 10
Creating a Vision 19
Deciding on the First Steps 20
Connect. . . Connecting Strategies 23
Focus on Opportunities for Relationships Rather Than on Activities 25
"It Never Hurts to Ask" 26
Encourage Everybody 27
"Community"- Belonging Rather than Zip Code 28
Keep Your Eyes Open for Opportunity 29
Strengthen and Rekindle Existing Relationships 29
Model How We Ourselves Meet New People 32
Knowing the Community 33
Find and Use Bridge-Builders 34
Introduce. . .Introducing People 37
Plan for Success 37
Presenting a Very Important Person 38
How Do We Know How Much Support is Necessary? 40
Introducing 41
Continuing Support. . .Beyond Acquaintance: Supporting and Nurturing
Relationship and Real Friendship 45
Being a Friend(Or: It Takes Two 45
Demonstrating How It's Done 47
Don't Stop Encouraging 48
Solving Problems 48
Are We There Yet? 49
Things to Watch Out For 50
Assisting Others.. .In Meeting and Becoming Friends with Persons with Disabilities 57
The Basic Strategy 57
Watch Out For. 59
Common Misconceptions About Communities 61
Service Practices that Foster Community Understanding and Acceptance 63
.
Agency Support for Relationship Building 67
Working on What's Most Important in Life 67
Staff's Community Connectors, Not Just Skill-Trainers 70
Enlisting the Powers that Be 70
Not Doing "More," But Doing Differently 71
Extending Agency Structures to Support Friendships 72
Staff Development and Community-Building Skills 73
The Role of Volunteers 74
What About Liability? (The Risk of Being Related) 75
Friends Can't Be Programmed 76
Decrease, Don't Increase Distance 77
Suggestions for Agency practices 78
List of Resources 79
Michelle and Chris
Michelle is 17 and lives in a 13-bed group home with people who are mostly older
than she is. She speaks very little, mainly one word statements like "mama," "no
no," and "baby." It was often difficult to get her up in the morning, and to get her
onto the school bus. She would often sit in front of her cereal bowl, and not initiate
eating, or asking or reaching for the milk. Staff worked on goals for a long time to
try and have her be more "motivated," and to speak more,
During the Friends project, staff worked on having Michelle have more friends her
own age. The school aide from her classroom participated with staff form the
group home in coming up with ideas. She offered to put a notice in the school
bulletin to ask for students who would like to become friends with a special
education student. Two girls, Melissa and Chris, responded.
They came out to the home and visited and met Michelle. The first time they
brought a crafts activity with them, and the staff let them know that really they
didn't expect the girls to do structured things, but just hang out, have fun, and be
friends.
With her programs already going on and with new anticipation of going to school,
Michelle started getting up much more easily, reaching for her milk and finishing
her cereal. One morning when it was time to get on the school bus, the staff were
running around trying to find her-then they realized she was already out on the
bus, waiting to go!
The girls come over after school on Friday afternoon. Staff drive them home after
the visit. The staff have supported Michelle in being a "hostess" for her friends.
They make sure she answers the door when they come. They help her bake
cookies the night before. They also try to "stay out of the way" during the visit.
During the summertime, the girls planned a picnic for the three of them. When
there is no school on a Friday, they come over to visit Michelle anyway.
The three girls do teenage stuff together. They look at Michelle's pictures, listen to
music, shoot baskets, play computer games, etc. They spent one afternoon putting
on makeup and fixing their hair. A couple of days after this visit, a staff person
walked by the bathroom and saw Michelle primping herself. She was saying
emphatically to herself in the mirror, `You're cute!" They have never heard that
much from her before.
When the girls were asked about what they were getting out of being Michelle's
friend, Melissa said, "Now I have something to look forward to on Friday
afternoons."
Introduction
Most of us count our family and friends among our life's richest treasures. The
people we care about and who care about us are the ones to whom we turn to
celebrate our accomplishments and share our losses. As we grow, the variety of
relationships we have also grows. As adults, most of us know hundreds of people,
in a rich network of our families, work, neighborhood, associations, churches, and
clubs. In each new relationship we learn about ourselves and our world, we figure
out where we fit into the scheme of things, where we belong.
Although individuals with disabilities are living in their communities and
participating in community activities, they often do not have the opportunities to
build the kinds of relationships that the rest of us take for granted. Too often
persons with disabilities have no real best friend, or their relationships are limited
to their immediate family, human service staff, and other people with disabilities.
Many individuals are also separated or distant from their families, so that all of
their relationships are dependent on the service system. Many people with
disabilities are isolated from regular community people, and have no experience of
community. Sometimes this isolation is a result of the individual having been
forced to leave their home community to live in an institution or to receive services
not available close to home. Sometimes it's simply a matter of having lived a very
segregated life-going to school, working and living only with other people with
disabilities.
Whatever the cause, a life without close, supportive family and friends can be very
lonely. That loneliness can be as serious a threat to emotional and physical health
as any diagnosed disease. In addition, a true sense of one's self and self-esteem can
be lost when paid people come in and out of one's life. Knowing who it is that cares
about you, and who to trust, can become confusing. A sense of uncertainty often
results.
Relationships are probably the most important aspect of our lives, and yet the
human service system has given very little attention to this fundamental human
need. A person with disabilities has the right all of us have, to be in relationship
with people who like us and want to be with us, just for ourselves, and to have
people who care about us, to whom we can turn and on whom we depend.
We have become quite sophisticated about identifying deficits in intellectual
functioning, communication, daily living skills, and vocational skills. We have
made great strides in designing training techniques and equipment to help people
in these important areas. However, most of us would agree that having fun with
our friends is far more important to us than whether we make our bed or balance
our checkbook. Yet, for people with disabilities, we have given a great deal more
attention to bed-making and checkbook-balancing than to having friends. We are
helping people be more competent, but they are still alone.
We believe that it is not only people with disabilities who are hurt by being
segregated from non-disabled people in their communities. There is also a loss to
the community, Typical citizens miss the opportunity to have a network of friends
that includes people with disabilities, and miss the richness of relationship
that a person with disabilities provides.
In the last few years, a great many efforts to encourage relationships between
children with and without disabilities have been initiated in schools across the
country and in other countries. However, outside of school systems, efforts
regarding community friendships have been less systematic. This manual is
the result of one systematic, planned, intentional effort for human services
agencies.
A Different Role for Staff
Part of what is implied in this manual is essentially a different role for staff of
human services agencies. Because of the limited number of relationships in
the lives of most persons with disabilities, staff can be the people who assist
persons in having a lot more people in their life.
It is possible that a significant, if not primary role, for staff can be that of
community connector. Staff can be people whose job it is to introduce people
with disabilities to others, and who support their relationships with people
who are not part of the service system. That is a vastly different role than
teaching people what they don't know, or providing for basic needs of shelter,
food, and daily needs, all of which are important and not to be ignored. It is
also a very different role than "training social skills."
Being cared about by others who really like you is one of the basic needs of
human beings. So is having a sense of self-esteem through knowing that
you're valued and cared about by others who are also valued. Staff can take
on the meeting of these needs as one of the most important parts of their job.
Addressing this need does not have to mean just one more thing for an agency
or service provider to be doing, or be required to do. Rather, addressing this
need does mean doing things differently than they are being done. It does
mean a different, rather than an additional, role for staff.
Background of the Friends Project
"Friends" was a one-year grant project, sponsored in 1989-90 by the Human
Services Research and Development Center of St. Paul, Minnesota, and
funded by the Minnesota Governor's Planning Council on Developmental
Disabilities. Its purpose was to learn about and develop methods for the staff
of residential service agencies to support people with disabilities in
establishing friendships and relationships with non-disabled people in their
communities, and to assist people with disabilities in being more a part of
their communities. It was based on the premise that, given the importance of
relationships, the job of human services staff should be to build community
connections and assist persons with disabilities in having more friends. The
2
project investigated what was involved in having residential service staff support
community friendships. This manual is based on the work done by the Friends
Project participants and focus groups.
Participants
Six agencies participated, all of whom provide residential services (support in daily
living) to persons with developmental disabilities. Each agency selected two to six
individuals to participate. A total of twenty-three individuals were selected by the
agencies, which provide services in different parts of Minnesota, in both rural and
urban/suburban environments. The individuals had disabilities ranging from mild
to severe. Some had physical as well as mental disabilities. They ranged in age
from 11 to 71. These twenty-three individuals lived in a variety of settings: group
homes, foster homes, their parents' homes, and independent apartments. Homes
ranged in size from a one-person apartment to a 16-person group home. The
amount of support provided by each agency ranged from a few hours a week to 24-
hour care.
Focus Groups
In starting out the project, a "focus group" was established for each of these twenty-
three individuals. Each group was made up of people who cared about the person
and who wanted to help the individual become better connected in his or her
community. Groups varied in size from two to seven members. All included at
least one residential staff person, and some included family, a case manager, day
program staff, or a teacher. The groups (including the individuals) worked over the
course of the year, brainstorming, trying various strategies to help the focus
individuals meet new people, assessing their progress and trying again. Although
similar in some ways to "Circles of Friends," these particular groups were more
structured and were focused on one particular issue: building community
connections.
A Totally Individualized Focus
The emphasis in each of the group's work was on the individual with disabilities,
and the strategies that were generated were those that fit the individual's
personality, strengths, interests and preferences. The ultimate goal was to widen
the person's circle of relationships with non-disabled people. The activities,
meetings, and efforts were totally individualized, and depended both on the focus
person and the character of the group members themselves.
3
About this Manual and About Friendship
This manual is for anyone who is interested in supporting a person with
disabilities to widen his or her circle of relationships and develop deeper
friendships. It describes the processes we used in the Friends Project,
strategies and methods which we learned were effective or non-effective,
observations based on our experiences, and real-life examples. Although we
used a particular design in our project, it's not necessary to repeat that design.
You don't need groups, or circles, or projects to be successful. You do need to
care, and to think.
Some readers may wish to use this as a step-by-step manual to community
participation. The manual does provide concrete suggestions about
relationship building that we hope will be useful to individuals with
disabilities, their families, friends and human service professionals. However,
we don't intend that these steps be turned into "programs" or "recipes."
Community and friends are about spontaneity, celebration, and genuine
affection. We do have to work hard, and there is planning to do, but the
bottom line is caring about people and wanting them to have the joys of real
friendship. The key is what works with the person you care about, and
creativity rather than prescription.
Although we worked with residential service agencies, almost all the
information can be used by anyone committed to working on friendship and
community participation: day training and habilitation programs, schools,
families, case managers, etc. Also, the people with whom we worked all had
developmental disabilities. Some also had physical disabilities or other
impairments, such as traumatic brain injury or mental illness. Much of what
is contained here will be useful with persons with other types of disabilities.
We also recognize, however, that there are other and distinct issues with every
individual, and that not everything will apply. The use of this manual will
need to be thoughtful and considerate of each person's situation.
We also recognize that some of our examples and issues are either specific to
Minnesota or perhaps are bigger issues in Minnesota than in other states and
countries. Again, be creative in your own situation and if you don't have the
same problems we do, just ignore us!
An Explanation
We believe all people belong together. We believe all of us have strengths and
weaknesses. We apologize for having to use the term "persons with
disabilities" to make this text understandable. Certainly many of us without
that label have very severe impairments of our own, as does our language.
4
Before You Begin
One of the reasons why often so little has been done in the way of promoting
relationships is that it is sometimes a very difficult thing to do. It requires not only
an understanding of why relationships are important, but it also often requires us
to restructure our thinking about the people we serve-what is most important in
their lives, what will make the most difference. Faced with an already long list of
program objectives and responsibilities, we often hesitate to "take on" one more
responsibility.
Our experience with Friends has convinced us that:
Relationships are so important to the well-being of people with
disabilities that we cannot afford not to pay attention to them;
Supporting friendships does not have to mean doing more-it can mean
doing differently;
Supporting relationships is something that can be incorporated into the
day-to-day support we provide;
Discovering ways to help people get better connected is not always as
hard as it seems, can even be fun, and is rewarding to us as well as to
the individual with disabilities.
People who participated in the Friends project told us: "This work on friends really
brought us back to what we're here for. . . it was re-invigorating, a breath of fresh
air. . . it reminded us we're in this for the people. . . it brought bad idealism. "
`The investment of time just to brainstorm and network was really all it took to
initiate the friend relationship pretty cheap investment. "
"I got a new view of[my son]. Unfortunately with special children, one tends to focus
out there onaims, expectations, goals, etc. This project got us looking at who (my
son) is, what he likes, dislikes, how he responds, etc.-NOW! It was invigorating!
And comforting and a happy exercise. I guess, since then I've viewed[my son]
more wholly.. . I also think there's an opportunity . . . to see beneath his symptoms,
he's a person just like the rest of us. "
5
Before you begin, these are some general principles we discovered are critical
to the support of friendships:
Care
It's best to make these efforts for people you really care about. If you don't
genuinely like and appreciate someone, it's hard to talk to others about being
their friend. Usually the deeper the connection, the better the chance for
success. However, this isn't a 100% time rule. By participating in this
process, some staff had the opportunity to discover how much more they could
like and appreciate someone.
Be a Friend Yourself - LIVE IT
Perhaps the most valuable contribution one can make to real friendship for
persons with disabilities is to be a friend yourself. It's difficult to support
others in being friends when you don't know the day-to-day in's and out's
yourself. Being personally committed, having a deep connection, struggling
through the problems, experiencing the joys - all make a difference in being
able to promote such relationships to others.
Maximize Opportunities for Connections to Happen
We cannot make people be friends with each other. Looking at our own
friendships, we know that we meet and know many people, but few are our
closest friends. We also know that many of our friendships have taken a long
time to develop.
What we can do is maximize the opportunities for people with disabilities to
get to know others, and maximize the opportunities for others to get to know
these individuals. And, we must make these opportunities happen on as
individualized a basis as possible. John must be known as John, not as "one of
those people who live in that home." When we're maximizing the numbers
and depth of potential acquaintances and friends, maximizing the
opportunities and continuing to support those opportunities over time, the
"click" of real friendship will have the best chance to happen.
.
.
6
Plan
Discovery consists of seeing what everybody has seen
and thinking what nobody has thought.
-Albert Szent-Gyorgyi
You got to have a dream
If you don't have a dream
How you gonna have a dream come true?
-Rodgers and Hammerstein
Think, Plan, Dream
There are many ways to start. You don't need a project on agency can designate
several individuals, and plan a big approach. One staff person can decide to start
making efforts for one person with whom they work. A parent can enlist friends
and others to get started.
It does take a one-by-one way of looking at people. It makes a difference to start
with a person that someone really cares about, and make sure that that caring
person plays a major role. If the person lives with a member of his or her family, it
is important to have the family's support. If this is the first time anyone in the
agency is trying something like this, it helps if the situation has some "stability-
that there is at least one person involved who has known the person for a long time,
and the person's life situation is not expected to undergo major changes in the near
future.
However, in our Friends work, we also encountered individuals for whom staff
turnover, change of agencies serving the person, family turmoil, or other disruptive
circumstances, made efforts to widen and deepen the individual's relationship
networks very difficult. Unfortunately, the people whose lives are the most
disrupted are usually the ones who are most in need of a network of stable
relationships with people who will be there over time and despite the disruptions.
The most important thing is simply to start somewhere. No matter where you start,
everyone will learn and that learning can then expand to others.
9
Discovering the Person's Interests, Gifts, and Capacities
Sometimes the people with the thickest files are the people we know the least.
The person is known as their problems or needs, as a receiver of services and
programs, but not as a human being. The real person is often lost.
To get a clear picture of the real person, we need to understand what the
person's life has been like from his or her perspective ("in his or her shoes").
By discovering what the individual likes and doesn't like, what makes the
person happy or frustrated, and by identifying what the individual has to
contribute to someone else, we can find clues to the kinds of strategies that are
most likely to work in connecting the person to others. Each of the Friends
focus groups spent time getting to know about the focus person by talking with
him or her (when possible) and with each other about the questions listed in
this section.
This method is not an "assessment." It requires looking at the individual in a
different light, a way in which the strengths of the person show more vividly
than the weaknesses. It does not have to take much time, but it should be
done with care. This process of discovery depends on the individual's
participation to whatever degree possible, as well as the involvement of
someone (or several people) who genuinely cares about and likes the person.
It is not necessary to work with a group, but gathering input from other people
and having a chance to share ideas and insights can be immensely helpful.
Also, helping people develop relationships will almost certainly be a lot of
work, and the more people who are involved and committed to the effort, the
better.
These methods and this format for getting to know the person have been
drawn from the Framework for Accomplishment Personal Profile model
(O'Brien and O'Brien) and the Personal Futures Planning model (Mount), and
are used here with permission. Additional information about this process is
included in the List of Resources at the end of the manual.
10
1. What Have the Person's Life Experiences Been Like?
A person's history can tell us a lot about why the person is the way he or she is.
Knowing the circumstances of the person's life can help us to better see that person
as a human being, and can provide clues about what the person's most important
needs are. Look for major themes rather than all the details.
Questions to Ask:
o What have been the important events and circumstances?
o Where has the person lived, worked, gone to school?
o How has the person's life been different from a "typical" non-disabled
person of the same age? different from other members of his or her family?
o How would you feel today if this is what your life history had been?
Dot has lived in over a dozen different places over the past 25 years. She left her
family's home to live with a foster family, then a child-care institution, several more
foster homes, another large institutional facility, another foster home, and more
recently several different apartments. She has been moved from one town to
another, often hours apart.
Her contact with her family has been sporadic and sometimes antagonistic. Her
school experience was disrupted by the frequent moves. She has received a
variety of services from numerous different agencies, depending on where she was
living.
Dot does not have a sense of a permanence or of a future. When she has a bad
day at work, she is ready to quit her job. When she meets someone she really likes,
she clings to that person out of the fear that this person, too, will "disappear." She
is often depressed.
Greg grew up in a town in northern Minnesota, where he had lived in a very distinct
neighborhood. Greg knew everybody in the neighborhood, and loved to do odd
jobs for people and get paid for them. A man who paid him minimum wage for
painting his fence said, "Just because he's handicapped doesn't mean he shouldn't
be paid like anybody else. " For another man, Greg did spring and summer yard
work and watched his oldest child. When other kids asked about working for him,
the man said, "This is Greg's job. Greg's worked for me for many years."
Around age 17 he started having serious seizures and problems at home. Greg
soon moved to a series of group homes, spent 3 weeks in a hospital, and lived a
year at a state institution. Now he is living with a roommate in a suburb of the Twin
Cities; it is a "bedroom community" with very little sense of neighborhood.
11
.
2. Who Are the People in This Individual's Life?
What Kinds of Roles Does the Person Play in Those Relationships?
A good way to gather information about the individual's relationships is to
make a relationships "map" like the one below. To make the map, you might
want to use a big piece of paper taped to the wall and draw with water-based
felt-tip markers. Have the individual help as much as possible.
Start by putting the person in the middle, and then draw the closest
relationships in the "inner circle." Add anyone the person considers a friend
or someone important . Ask the individual about other people. Add them
either closer or farther away, depending on the importance of the relationship
to the person.
Use your imagination to devise symbols or ways to indicate the roles people
play and the quality of these relationships. You might use different colors for
paid staff, family, other people with disabilities, etc. You might draw heavy
solid lines connecting the individual to people with whom he or she feels a
strong connection, or use a dotted line for less important relationships.
12
Questions to Ask:
o Who are the people who are most important to the individual?
o Who else does he or she see on a fairly regular basis? (Family, neighbors,
people at work or school, church, other places the individual goes, people he
or she sees in the evening or on weekends.)
is there anyone with whom the person feels close that he or she hasn't seen
for a while and would like to have contact with again?
which people are paid to be there?
o Who are other people with disabilities in the person's life?
o How often does the person see each of the people on the map? talk to them
on the phone? write or receive letters from them?
when they see each other, how do they spend their time together? do they
spend time just with each other or in a group?
o Who initiates the contact?
It maybe necessary to talk to family or others in order to complete the picture of
important relationships, and to get a sense of how family members or friends see
their relationships with the individual.
Once the map is made, look for patterns in the person's relationships. How many
people are on the map? Are most of the names those of other people with
disabilities or paid staff? Does the individual feel close to his or her family? Does
the family have frequent contact? Are the people the individual feels closest to the
ones he or she sees the least? Think about what the map would look like for a non-
disabled person of the same age. What relationships seem to be missing? The
patterns that emerge can guide your decisions about priorities and where to start in
your efforts.
Relationships maps are discussed in more detail in It's Never Too Early, It's Never
Too Late. (See List of Resources, p. 79.)
Dot said she had "lots of friends'' and really didn't need any more, although her
staff saw her as a very lonely young woman, with no close relationships and no
friends her own age. Dot didn't put her family on her relationships map. She did
include about 15 staff from the various places where she had lived, as well as `her
friends'' she had "known for a long time. " Almost all of these people lived in other
towns or even other states.
Of around thirty people Dot called "friends,' 'there were only three non-staff
people that she had seen within the last two years. There was no one on Dot's
map whom she saw regularly, except for staff. Dot's relationships map painted
a poignant picture of a young woman who has lost contact with the people about
whom she said she cared most.
13
3. Where Does This Person Spend Time?
In What Activities Does the Person Participate?
The activities in which the person already participates provide a starting point
for identifying where the person might make connections with non-disabled
people. It is important not only to list the activities and places, but also to
what extent the person participates in the activity and who is involved.
Questions to Ask:
o How often does the person participate in each activity?
o Who does he or she do it with? in a group? alone? with staff?
o How likely is it that the individual would have an opportunity to meet
and get to know non-disabled people in each of these activities or
places?
o Which of the activities does he or she enjoy most?
Take a moment to consider the information you've gathered on the
relationships map and activities and places list. Do any patterns emerge?
Does the individual go lots of places but only with other people with
disabilities? Are the activities segregated (that is, are community settings
used only at times when non-disabled people aren't there)? Could there be
genuine opportunities for getting to know non-disabled people built into the
types of activities the person already enjoys?
Laurie is in her late twenties and is a dedicated sports fan. She is an active
participant in the activities organized by the community adaptive recreation
service and is always ready to go to a game-football, softball, hockey,
whoever is playing. She would love to meet a member of the Vikings or Twins.
Laurie spends most of her time in human service arrangements. She lives
in a group home with five other women and works at the sheltered workshop.
She goes to Mass each week-usually on Saturday evenings so that she
won't miss sports on TV on Sunday mornings.
Laurie's group decided to explore having Laurie become involved in sports
and fitness activities at the same time and in the same places as other
members of the community. Laurie decided she would like to learn to use the
equipment at the local community center so she could work out with other
people rather than doing exercises by herself at her group home.
14
4. What Works and What Doesn't Work for This Person?
Each of us has our own set of conditions under which we are at our best, and
conditions which we find particularly frustrating or stressful. A "morning
person" might be bright and cheery at 6 AM., while a "night person" is at her
best after the sun sets. Some people need to plan everything they do; others
take whatever comes up in stride and thrive on spontaneity.
When we live or work with someone, we usually come to understand at least
some of what works and what doesn't work for them. Understanding the
whole person in this way helps us determine which strategies may be most
effective and what kinds of supports and safeguards will be necessary.
One way to think about what works and what doesn't work for a person is to
make a chart like the one below. Some questions to ask:
What Works:
o How does the individual like to be treated?
o What kinds of people does he or she seem most comfortable
with? respond to best?
What Doesn't Work:
o What kinds of situations or events frustrate or upset her? what
kind of people do they respond to worst?
" What situations get the person "in trouble"?
WHAT WORKS WHAT DOESN'T WORK
coffee-treats-snacks
being made to do something
listening to polka music
he doesn t want to do
newspapers and magazines
doctor, dentist, neurologist
going out to eat
appointments
church environments
where vision is important
helping in kitchen
vacuum-cleaning
uneven surfaces
beer and enchiladas
unfamiliar places
folding papers
loud noises
getting in the mail
crowds
pushing shopping carts
waiting for someone to take
naps
relaxing him to the bathroom
sanding blocks
mornings
shaking hands
being rushed
being in the community
being tired
paint ing
being touched
people doing silly things
putting pajamas on
15
5. What are the Person's Interests, Gifts, and Abilities?
We often meet new people through shared interests, like softball, volleyball,
sewing, art, music, or hobbies. A person's interests will often provide the best
clues to possible places and groups with which they can be connected.
If a person has a particular gift or strong abilities, that will also provide clues
to the best strategies for making connections. Someone with a good sense of
humor mav do well in new social situations. Someone who likes to work hard
might enjoy helping set up bingo at the V.F.W. hall. This list can help identify
people who would share their interests, places and groups where the person
would be appreciated, individuals who would appreciate getting to knowing
them, and others who would benefit from their capacities.
Questions to ask include:
o What are the person's interests?
o What are their strongest gifts and capacities?
o What sort of service does the person have experience offering?
o What contributions does the person make to other people's lives?
o Which of the person's skills and attributes are needed and wanted by
others?
nice makeup
dresses nice
pretty smile
great sense of humor
talks nice
pretty smart, knows what's going on
good writing
needlepoint
collects : Santa Clauses, rock and roll books,
posters, record collect ions, silk flowers
bowling
walks, parks
friendly-invites people over
clothes -shopping
wins radio contests
CAPACITIES, GIFTS, AND INTERESTS
16
6. What Does This Person Have To Contribute To Others?
Because we are used to assessing what the person cannot do, it maybe difficult to
see what he or she could contribute to someone else (especially if the person has a
reputation for being a "problem"). And when we are used to thinking of an
individual as a receiver of assistance or services (a "client"), we have to switch gears
to think about what the person has to giue.
This step in the process of getting to know the individual from a new perspective
can help overcome any uncertainty about whether anyone would really want to get
to know the individual. It can help decide where to look for other people who would
value the individual's unique characteristics. There may be some overlap with the
previous section.
Questions to Ask:
o What does the individual do well?
o What is there about him that people like or might like?
o What does he or she have to offer that others would see as a contribution?
One way of getting at the uniqueness and capacities of the person is to make a list
of words or phrases that best describe the individual. Doing this with the person as
much as possible, or with a family member or someone who cares about the person,
will help keep the list on track. Focus on the positive characteristics-don't let this
become just one more list of what's wrong with the person.
Patrick's group was having a hard time with the question That does Patrick do
well? "It was easier to think about what there was about Patrick that would make
it hard for someone to get to know him. They tried making a list of words and
phrases that describe Patrick. Here is the list:
handsome
intuitive about people's feelings
snazzy dresser
affectionate
quiet dedicated to people he cares about
shy
stubborn
funny
manipulative
good sense of humor
volatile moods
sensitive
predictable and unpredictable
artistic
When the group took a look at this list, they agreed who wouldn't want a friend
who was sensitive, dedicated and affectionate, handsome, and fun, even if
sometimes he was stubborn and moody?
17
.
.
7. What Assistance Does the Person Need?
It's important to think specifically about the kinds and amount of assistance
that would be required if the person were to spend time with another person
in a typical community setting.
The supports necessary to help someone who is quite independent meet non-
disabled people and participate in community activities will probably be vew
different than those necessary for someone who needs physical assistance or
supervision throughout the day. Sometimes we simply don't know what kind
of assistance the person might need in a new situation. Thinking through
exactly what is necessary and how it might be provided in specific situations
helps insure that both the individual and community persons will be
comfortable and safe, and that the new experience will be a success.
Questions to Ask:
How much assistance does the person need? (physical assistance,
medication, supervision, personal care, understanding communication,
being interested in someone else, not overeating, etc.)
Under what circumstances does the person need help?
Who provides this assistance now?
Could someone from the community provide the necessary assistance?
How could someone be trained or supported to provide the necessa~
assistance?
What are the implications for the person's participation in various
community activities?
Dotreceivesonly minimalassistance. Forthemostpart, she takes care of
herself. Shedoesnotrequire supervision. Shecouldparficipate ina variety
of community activities independently, but might need someone to provide
transportation.
Because Patrick has seizures, he needs someone available to help him all
the time. He also needs someone to give him his medication. In order to
participate in regular activities, at least one person who is with him needs
to understand how to manage his seizures. Newpeople could be trained
to manage them.
.
18
Creating a Vision
Each focus group in the project needed to have a vision of what the individual
wanted and what they wanted for the person in terms of a network of relationships.
Creating that vision was necessary before each group could decide how h go about
creating opportunities for the person to meet non-disabled people. Sometimes there
was a lack of agreement about what was most important for the individual. Some
individuals said they didn't need any new friends, while others in their groups
believed that the lack of relationships was a key issue. In some groups there was
some question about just how idealistic to be in creating the vision. Some visions
were very modest- wanting just one friend for the individual. Other visions were
larger-wanting the person to enjoy a full and active community life with lots of
friends and family.
In order to visualize the ideal relationship future, it is necessary to set aside
thoughts about what seems possible or probable, and instead do some "wishful
thinking." Don't worry if the ideal seems so unrealistic that you don't see how you
could ever reach it. Sometimes what seems impossible at first is actually within
the realm of possibility. However, if you are working with an individual who might
not understand that this is "wishful thinking," it is important to be careful not to
mislead the person with your enthusiasm only to set him or her up for
disappointment.
Questions to Ask:
oWhat kind(s) of relationships does the person want?
o What is the most ideal situation, in terms of relationships, that we can
imagine for the person?
o Is there anything about existing relationships that we or the person would
like to see change?
oWho are the people who could benefit from being in a relationship with this
person?
April is a woman whose goal was to find a boyfriend. However, although she is
very fonvard about meeting men, conversations almost never get beyond the first
two sentences. Her constant conversation about boyfriends also seemed to
indicate a desire to be really close to someone, and wanting to be liked just the
way she is. Her group and April wanted her to have a few close friends-people
who would spend time with her, who really liked her, who would call her up to do
things.
19
.
Deciding on the First Steps
Once the vision is created, it's time to decide how and where to start.
Sometimes there are problems in the individual's situation that need
immediate attention. It may be necessary to sort out what is most important
for the particular individual now in order to know where to start working
toward the ideal relationship future. Or, the possibilities and opportunities
may be very clear and straightforward and everyone is excited to get started
immediately.
After completing all the steps listed above, a lot of ideas and patterns emerge.
The group members, or single staff or family person, can then generate a list
of ideas.
Questions to Ask:
o Given these interests, what's worth looking into?
o Do I know anyone who shares similar interests?
o What groups or associations are worth exploring?
o Who can I ask about this . . . ?
The first steps to take will come from being clear about what you can do as
first steps. It's time for action when an action is identified in a clear step and
someone says "I can do that." The next section presents some general
principles to consider in doing the real work of connecting.
Linda let her family home to live in an institution when she was 4 years old.
She doesn't speak, uses a wheelchair, and needs assistance to get around.
Afteryears of institutional placements, she now lives in a large group home.
Linda's group had already decided that the ideal was for Linda to have a
friend who could spend time with her, get to know her, and eventually be able
to take her out for rides, to eat, or home for a holiday. However, there was
another issue for linda that they wantedto address. Linda's parents had had
very little contact with her for years, although they lived less than two hours
away. There were other family members who hadkept in touch with the group
home, but only infrequently, and no one knew how to contact them. The group
decided what was most important for Linda now was to be closer to someone
in her own family, and made that their first order of business.
.
.
.
-
.
Lily is 11 years old and lives at home. She attends a regular third grade class
in her local school. She speaks some, uses some signs, is affectionate and
physical, but needs constant supervision. While Lily has an extensive family,
almost all of her time outside of school is spent with adults. The group decided
that the first priority was to find ways for her to spend time with children her
own age in the neighborhood, and to have some friends her own age.
20
Connect
No man is an island, no man stands alone. . .
We need one another, so I will defend
Each man as my brother,
Each man as my friend.
Joan Whitney & Alex Kramer
People who need people
Are the luckiest people in the world.
Me Styne & Bob Mertill
Connecting Strategies
There are a number of important ways that people relate to each other. The list
below includes a number of types of ties and connections, all of which can lead to a
greater sense of community and belonging. They are from Ties and Connections
(see List of Resources, p. 79):
Friendship: having friends, relationships, including a `best friend'. Mostly
these will be what can be described as `strong ties'.
Acquaintance: having a network of acquaintances.
Membership: being a member of associations and organizations.
Keeping in touch: with trends and movements of interest; subscribing to
them; belonging to "social worlds."
Being part of a family: having an active connection with family life.
Having a partner: or someone to whom a long-term commitment has been
made.
Being a neighbor living next door to, or at least near to someone-down
the street or across the road.
Knowing or being known in a neighborhood: using the resources of the
neighborhood (usually the area within easy walking distance from where you
live) and recognizing and being recognized by others who use them too.
Four main themes to consider which impact all relationships are:
Time: The amount of time people spend together and the length of time
they have spent together in the past.
Intensity: Some ties and connections are invested with a lot of emotion.
They mean a lot to us, perhaps more than anything or anyone else. Others
are less important, and some not very important at all.
Intimacy: We share confidences with some people more than with others.
Some of our ties and connections involvea lot of trust.
Reciprocity: The exchange of services between people. This may range
from simply following the rules of politeness, to providing practical help, to
sharing major parts of our life and work.
23
There is no formula for choosing which activities and strategies to try for any
given individual. Such efforts can start anywhere - small businesses, public
places, associations and clubs, churches, staff, friends, parks. The list below is
an example of the types of clubs, interest groups, and organizations found in
just one community: (from John Mcfiight, "Regenerating Community")
Based on our work with Friends groups, we discovered some general principles that
can guide the work of beginning to make connections.
Focus on Opportunities for Relationships Rather Than on Activities
Think about community participation in terms of the relationships the person
might develop, rather than the places he or she might go. While activities can
provide the setting for meeting people, there is a danger in assuming that going to a
movie or shopping or bowling is "the answer." Some activities hold more
opportunity for meeting and getting to know people than others. A group outing to
the mall is not likely to produce an opportunity to get to know people. Neither will
simply having one staff accompany one person with a disability. While malls are
great for "people watching," they are less effective for "people meeting."
However, one individual accompanied by a staff person, if necessaqy, could go ta a
neighborhood cafe on a frequent basis. If he or she repeatedly went at the same
time that the "regulars" were there for their coffee break, there is a greater
likelihood of results. The results may not be immediate friendships to last a
lifetime, but instead a familiarity that may lead to relationship.
Ollie is in his early 70's. Ollie does not communicate by talking; he does make
sounds that those who know him well can understand. Once a person spends
some time with Ollie, it is easier to know if he is frustrated, if he is enjoying himself,
or if he is bored.
Oilie enjoys listening to music, people-watching, and drinking coffee. The agency
made arrangements so that one staff person would take Ollie out one day a week
to "hangout"atalocalco ffeeshop. Thegroupbelieves thatasmorepeople in the
community come to know Ollie, he will be seen as a potential friend rather than just
"one of the men from the group home. "
Jay is a real sports enthusiast, and his group used that enthusiasm to explore
opportunities for him to meet regular people. First, they looked into his being an
assistant coach fora local T-ball team. Second, his minister was very interested
in him. He invited Jay to play ball with the church's softball team in their league;
the team was a group of peeple that got together mainly because they enjoyed
playing.
"Community activities" can mean taking the group home van out for a ride with
seven or eight residents and stopping at McDonald's, or it can mean one staff
person taking an individual to help at the church pancake breakfast. The first
instance is not likely to create an opportunity to really get to know any community
citizens-working at the church breakfast would. It's important to be creative. Use
the resources you already have.
25
"It Never Hurts to Ask"
The only way to start finding out what you don't know or have is to ask. If
you're unsure about community resources, investigate. Call anyone you may
know, look things up in the phone book, ask others who they know.
The only way to discover if someone would be willing to meet someone, or do
something with someone, is to ask. Sometimes we're reluctant to ask others to
do things. We typically expect that people will say "no." However, over and
over again in the Friends project, stafl' were amazed at what happened when
they simply asked. They thought others would be reluctant, or need more
information. Over and over again, people simply said "yes." And not only
"yes: but "yes, no problem" or "sure, have her come over today."
Afi has a real interest in history. A few miles outside of town the historical
society has maintained a country general store that is open in the summer.
The group thought Art would enjoy volunteering at the store, and Art agreed
to give it a try.
The staff person who volunteered tocallthe woman in charge of coordinating
volunteers made a long list of reasons why Art shouu be a volunteer. She
wasexpectingsome hesitation ifnotresistance. Whenshemade thecall, the
woman in charge said ''yes"before thestaffhada chance togive hereven one
good reason.
Vicki'sgroup wanted to find ways to bolster her sense ofsdfesteem. She
hadexpressedan interesting having a boyfriend, butdtin't like anyof the men
frum the sheltered workshop. When the annual dance was coming up, one
of the staff membersin Vicki'sgroup hadthe kiea to talk to the very handsome
andsuave exchange student from Argentina who was staying with herfamily.
The staff person really didn't think he would agree to go to the dance with
Vicki, butsheaskedhimanyway. He said, "Sure, "andheand Vickiwent and
hadagreattime. Vickiwas theenvyofallthe women atthedance-shehad
one of the cutest dates. The staff person said she herself hadiearned that
W never hurts to ask."
26
Encourage Everybody
Sometimes people are reluctant to try things. We all have some fear of a new
situation. Often people who are initially hesitant will be willing to try something
with very little encouragement. Some people take more encouragement, or more
time to feel comfortable.
Sometimes, &r trying something and it has not gone well, it becomes even harder
to try the next time. However, the most important thing after falling off a horse is
to get right backup on it.
We found that it was important to maintain an encouraging attitude. People
learned a lot when they were encouraged to believe: "Yes, I can do it. It is
possible." This was true for:
o the person with a disability
o the parent of someone with a disability
o the community person
o community organizations
o staff members
" agencies
o case managers
Almost every single person in the project, over the course of several months,
became reluctant or discouraged at one time or another. Sometimes
encouragement was not enough in itself, and more plans needed b be made. But in
the end, when people did finally tqy fier they had initially been reluctant,
unexpectedly positive events almost always resulted. You can never underestimate
really believing in yourself and others.
If you become discouraged, seek out someone who will give you a different light on
the issue and help you see what is possible.
Ahad been on a dief for years. Her staff had kept encouraging her to exercise
regularly, or join a health club. She kept saying No, No. Everybody knew she was
one of those people who hates to exercise. One of her interests, however, was
meeting men. So her group kept encouraging her at every meeting to at least try
going to the healthclub. They enthusiastically spoke about how attractive the men
were who attended, and wha ta good place it was to meet people. Finally, April
agreed to at least try it.
Patrick's group had decided they wanted to find some other teenage boys to hang
out with him. Ma@e, the staff person, knew a young man at her church she thought
might be interested. She began the conversation with him one Sunday, "I know
somebody you might want fo meet. " Then she accept after him"a few Sundays in
a row. He finally agreed to come and meet Patrik, but said he'd be more
comfotable if his friend, another teenager, could come along.
27
"Community" May Have More to Do with Belonging than Zip Code
In our own lives, there is not one "community" which exists "out there"-like a
thing we can highlight on a map. Some of us don't live in a community that
has a particular character. We may live in an area where we don't have a
sense of community from the physical region. Our "community" might not be
our town or neighborhood, or our geographic voting area.
We might rather define community as the people, places and associations to
which we are connected. Our communities are defined by the people and
associations we have and where we do have a sense of belonging, of being a
part. For some of us, it may be our church, a social club, the group of people
we work with, our soflball team, or it maybe our neighborhood.
People with disabilities ofl,en lack these community connections. For the
person with few or no connections, we need to think about whereto begin to
build these types of connections and this sense of belonging.
For most of us, our relationships and associations change over time. Our
friendships and our sense of belonging come from different people and places
than they did ten or five years ago, or even one year ago. Establishing and
maintaining relationships is an ongoing challenge for all of us, but especially
for those individuals who have disabilities. In our work to support people with
disabilities in being related and connected, we'll probably never be able to say
that we have "met the objective 100%"- that the job is completely done. As
people come and go in their lives, each individual will likely continue to need
assistance in maintaining relationships.
Kay moved into a new house in a new neighborhood. There was a church
justoneblockaway inwhichshecouldgetinvotved. Theperson who washer
roommate belonged to a church that was farther away in a different
neighborhood. However, it was his family church. He had attended there
since he was a little boy, and both his parents had worked for the church for
years. Theyknew everybodythere andso didthe staflperson. ltmightbe
a much better church in which to involve Kay, since he already had a deep
experience of belonging and relationships. She could be much more
naturally included.
28
Keep Your Eyes Open for Opportunities
Once you start thinking about possibilities, you might be surprised at the
opportunities that present themselves-a neighbor who shares the individual's
interest in vegetable gardening, a church bulletin announcement recruiting
volunteers for the fund-raising bazaar, a friend of a friend who shares the
individual's interest in local history. It's important to keep looking and b keep
asking.
Vicki's group had talked a good deal about finding a woman close to Vicki's age who
coukf get to know her and spend some time with her. Someone in another focus
group had mentioned the name of a woman who had recently moved into town.
When the staff person in Vicki's group heard the name, she sad "Oh, I know her.
l wentto schoolwith her. lnever thought about it, but she might be a good friend
for Vicki. Mask her. " She did, and the woman has become Vicki's friend. They
talk on the phone, go for walks and shopping together, and Vickiisgetting to know
her whale family.
Strengthen and Rekindle Existing Relationships
One place to look for opportunities for belonging and connectedness is in the
already-existing relationships on the person's relationships map. Pay attention to
the relationships that seem the most important to the individual.
Family
Even if the individual's family has not been very close, there maybe a member who
would welcome the chance to become more involved. Some families have been
discouraged from maintaining contact by physical distance or "professional
distance" -when the service system has made them feel like they are not needed or
can't do as good a job as the professional staff can. Some family members may feel
guilty or hurt as a result of their experience raising or sending away a child with
disabilities. While we can't undo the past, we can. . .
o make sure there is a record of family members, their addresses, phone
numbers, birthdays, anniversaries, etc.;
o help the individual to maintain or reestablish contact with family members;
o contact family directly in order to maintain relationships on behalf of
individuals who cannot do so themselves;
o look for ways that the individual can be an active and contributing member of
his or her family-sending cards (and gifts) for birthdays and holidays,
keeping in tiuch by letter or phone, sending photos and keeping an album
with family pictures, or inviting family members to visit.
29
When Linda's group began to look for ways to reconnect her with her family,
the first thing they decided to do was to send Christmas cards with Linda's
photo enclosed. A staff person called Linda's parents and asked for the
names and addresses of relatives so that she could send cards. Linda
received several cards and letters in return.
Her great aunt, who lives in the same town, came to visit Linda; they had not
seen each other for some time. On Christmas Day, Linda's parents and
brothers came for a visit-their first visit in over four years.
The contact with hersisterandgrandmother which began with the Christmas
cards has continued. Linda now has a bulging album with her photos and
cards that reminds her that she belongs to a famity. Linda also receiveda
letter from her younger sister saying that although she never really had a
chance to know Linda, "lt'sgood to know she has a sister'' and she thinks a
lot about what it WOUM have been like if we `d been able to grow up together. "
The staff who read the letter to her were amazed at Linda's depth of
recognition and tearful response to the moving letter.
The group decided to have Linda visit her family home, which she had never
tine. Theycalledup the parents, unsure of what to expect. But the family
agreed to work with the staff so that Linda could come home for a visit.
Marvin lives by himself in a small house; in the beginning, his focus group
included just two staff members. The group soon realized that it would be
helpful to include some of Marvin's family members, most of whom lived in a
community less than 20 miles away.
At the next focus group meeting, Marvin's mother told the group that he had
always been very close to his sister. Since Marvin had moved to this
community, they rarely had a chance to get together. The focus group
decided to have the next meeting in the community where his mother and
sister livedso thattheycouldbe aparfofhisgroup. Throughout theproject,
staff tried to arrange other opportunities for Mawin to spend time with his
sister.
30
Michelle had been in a couple of fosterhomesbefore she came to thegrouphome.
The group home staff knew that Michelle had a bg family, but they had only had
contact with a brother and Michelle's grandmother.
When Michelle was to be confirmed, the group home staff asked these family
members if they would like to have amnfirmation party. Theyofferedto have the
party atthegrouphome andaskedthe familyto help with the planning. Twenty-
sixmembers of Michelle's family came. Formostofthem, it was the first time they
had visited Michelle's new home and the first time they had been together at an
event in honor of Michelle.
Of course there will be some family members or others who don't share the
individual's feelings of closeness and won't want to be involved. Some people don't
want to stir up the past, especially if it has been painfil. However, others might
find comfort in reestablishing their relationship with an estranged family member.
Other Old Friends
The same strategies that encourage and support family involvement can be used to
strengthen or rekindle relationships with others. There are often old friends or
neighbors, and former staff people who now might enjoy spending time with the
person as "just a friend."
Vicki had toklher Friends group about a couple of former teachers she really liked.
When Vicki decided to have a birthday party, she invited them. Neither was able
to attend the party, but, not too long after that party, one of them calledto invite Vicki
to an open house for another teacher who had moved way and was coming back
fora visit. Vicki was really thrilled to be included in this "Welcome home?."
31
Model: How We Ourselves Meet New People
Most of us meet new people in a variety of ways-in our neighborhoods,
through our work or our children, in church, civic organizations or leisure
activities. We make friends with people we're around a lot. Sociologists have
shown that proximity or physical closeness is the number one factor affecting
who we make friends with. We are more likely to develop a close friendship
with our next-door neighbor or someone we work with every day than with
someone we only bump into occasionally. In addition, our friendships often
develop slowly over long periods of time.
Most people who are settled in life don't consciously undertake serious
friend-making activities. However, there are a few times in life when we do
consciously set out to make new friends: starting college, moving to a new
town, or after losing a spouse, for example. At those times, it's typical to look
in the places where there are people who share our interests. We might look
in the Yellow Pages under "Clubs and Organizations," watch the local
newspaper for announcements about events and activities of interest to us, or
look up the class schedule for the local adult education program.
Sometimes, we consciously decide to look into a new activity we've never tried
before. We might ask people we do know if they know anyone who belongs to
a book club or likes to ride in bike races or go bird-watching. When moving to
a new town, we're ofken much more assertive about meeting our neighbors,
and we pay more attention to the local news to find out "who's who."
When we're trying to help people with disabilities meet new people, it helps to
identify our own strategies, what's worked for us in the past. We can ask
ourselves what we did, or how we would do it if we had to figure it out for
ourselves. The simplest question is, "If this were me, what would I do?"
Ad loves history and books; he especially likes history books. He toid the
group that hewould like to volunteer at the library. The group decidedthebest
way to begin was to just ask.
One of the focus group members agreed to stop in at the library and talk to
the head librarian. He thought it was a grea tidea, and asked if Art could come
by to meet the other staff that afternoon. By the next evening, Art was a
volunteer at the library-andthe entire process took just a little over 24 hours.
Vicki was very interested in sewing. The staff person who worked with her
chatted with other staff about people they might know who were also -
interestedinsewing who might really like Vicki. Shekeptaskingpeople until
somebody suggested Muffy, who sounded like exactly the right person.
32
Knowing the Community
In connecting people, it also helps to know the community-what organizations
exist, who belongs to them, where there is to go, and what there is to do. It helps to
identifj the community leader-the "movers and shakers" with their fingers on the
pulse of community activity. Sometimes, there are community members who are
not necessarily leaders, but who are the people who know everybody and who know
what everybody is doing. These people can not only be information resources, but
also effective allies in our efforts.
Most people with disabilities are not active in civic and social circles in their
community, and often, the people who work with them are not either. It can be a
confusing and frustrating experience to sort through all the available community
opportunities to find the "right one." It helps to. . .
o gather information (from the local Chamber of Commerce, the newspaper,
etc.) about community groups and activities;
o find people who know the community well-people who have lived there for
a long time, know a lot of people, and are active in local organizations;
o get involved in a community group or activity yourself.
In our work with "Friends," we found that in the rural areas, it was easier In find
the community leaders; someone always knew someone who belonged to that
church" or "lived in that neighborhood." The social and civic structures seemed to
be better-defined and easier to access. The communities were smaller and had
well-defined places where community people gathered-where the "action" was.
Everyone in these towns, including the staff, knew these places.
In some of the larger, urban communities, there may have been more connecting
opportunities, but there was much less sense of a well-defined community. In some
suburbs, there was almost no sense of place, or of people knowing each other. It
was more difficult to identify the "community leaders and establish personal
contacts. But it was possible it just took more asking.
Bill is a teenager who hadbeen severely injured in an accidentolthough he had
traumatic brain injury, he retained most of his teenage interests, including music
and girls. He told his group he would really like to meet people by finding a band
to hang out with. Of course, he was also particular about what kind of band-
it had to be heavy metal.
Because he lived in a suburban area with no must clubs of its own, it was not easy
at first to locate a heavy metal band nearby. A member of his group contacted a
music store in the next town. She asked the owner if he might help a young man
connect with a band. The music store owner said, sure come in anytime andwe'll
talk. Bill's staff person took him over to the store. The owner was friendly and
helpful, and gave Bill the names of three heavy metal bands he knew in the area.
He said if they didn't workout, comeback and talk to him again.
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Find and Use Bridge-Builders
"Bridge-builders" are the people with a wide range of connections in the
community who can help introduce people with disabilities to non-disabled
community members. It helps to have someone like this as an ally-
supportive of the idea that people with disabilities belong in the community.
If you do not already have someone like this, you might want to consider
making it a priority to find these people and enroll them onto your side.
Bridge-builders have the advantage of being seen as regular community
people-not human service workers. Because they are community leaders
(whether formal or informal), their support for the inclusion of people with
disabilities in social and civic activities can be very effective. Bridge-builders
can be veqy visible community member+someone active in local government,
the postmaster, a teller at the bank, the manager of the grocery store. They
also may be not so visible-a mother or father who's active in the PTA, 4-H, or
Scouts, the organizer of the summer sofiball league, etc. A good way to find
these people is to ask around: `Who do you know who knows lots of people in
town?"
Henry's group hoped to find an older man close to Henry's age from his
church who would be willing to get to know him, sit with him at church, visit
with him at the after-service coffee hour, and maybe even give him a ride to
church each Sunday. The staff contacted woman who had served on the
agency's Board of Directors and who was also an active member of the
church to explain their idea. Thewoman then met witht he minister and asked
him to help her find someone who would like to get to know Henry.
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Introduce
A friend may well be reckoned the masterpiece of nature.
-Ralph Waldo Emerson
It is only with the head that one can see rightly;
what is essential is invisible to the eye.
-The Little Prince, Antoine tie Saint Exup&y
Introducing People
If you've ever introduced one friend to another or to a group of friends, you probably
wondered beforehand if they were going to like each other. If one of the friends is a
bit unusual (has a prominent tattoo or looks just like Barbra Streisand), you
probably wanted to say something to put the other friend at ease when they met.
("He doesn't mind tattoo jokes-he collects them" or Whatever you do, don't
mention that she looks like Barbra Streisand-she hates Barbra Streisand!")
When you want to introduce a person with disabilities to someone who might not
have had too much experience with people with disabilities, or to a group of people,
you will want to make everyone as comfortable as possible. The time, place and
circumstances of the meeting could make a difference. What you tell each person
can also make a difference. It may help to think of it as setting up a Wind date" in
which you want to do everything you can to make sure that both people Wit it off
with each other from the start.
Plan for Success
Think through beforehand: what will make the meeting successful for the person
with disabilities as well as the community person? It makes a difference to do
everything we can to insure that the experiences an individual with disabilities has
in the community are successful-for the individual and for the community. That
means anticipating as clearly as possible what will be most likely to ensure a
positive experience for all concerned, what the potential problems might be, and
preparing adequately by building the right supports and safeguards into any
situation. These supports might include having SW accompany the individual in
the community along with the non-disabled person, or "training the community
person to assist the individual or to manage potential problems. Insuring success
might also include preparing the individual for the new experience.
For some people who are very sociable, outgoing and at ease in new situations,
introducing a new friend does not require much groundwork. For others who are
painfully shy, or anxious, it could take some time and support before they feel
comfortable with someone new. We need to think through who the "audience"
(community) is, and what will have them be most receptive. A class of high school
sophomores will require a different approach than the regulars at the neighborhood
tavern.
Wanda is a woman who does not warm up to new people quickly. She is nervous
around strangers, and worries about whether someone she meets will be nice to
her. She doesn't like to ride in a car with someone unless she is sure that the person
is a careful driver. She is most comfortable when she can take her time getting to
know someone.
In Wanda's situation, it worked to have a trusted staff person go along the first
couple of times she went out with a new acquaintance until she decided she liked
and trusted that person enough to go without staff.
- 37
Jay likes everyone. He is independent enough to get around his town on his
own and meets new people easily. Jay wanted to take an exercise class.
When his group talked with him about the class, he seemed comfortable
getting himself there on his bike andwas prepared to go on his own. He had
attended other classes in the same building, knew how to find the room where
the class met, and knew how to dress and what to take along. After the first
class, Jay said he didn't want to go again. He didn't say why, except that it
was "too hard."
This might have been an instance in which it would have been helpful for
someone to talk with the instructor ahead of time to go to the first class with
Jay. He could have had the chance to meet the instructor before hand and
let her know that he had never taken this kind of class before. Ofcoursse, this
would have to have been done without embarrassing Jay, and maybe the
class would still have been so hard that he wouldn't have enjoyedl. Perhaps
the others in the class were unkind; maybe the instructor would have been
willing to help the others welcome Jay.
Mark is 20 years old and attends classes at the local high school. His group
wanted to find some students his own age who might be interested in getting
to know him better an dbecoming a friend. The group decided to write a letter
and worked with one of the high school teachers to get the letter distributed.
When there was no response, group members looked at the situation and
decided that a typed letter was probably not the best way to approach
teenage boys.
Presenting a Very Important Person
Reputations are powerful forces for every person in every population.
Reputations of people with disabilities are often built on single incidents or on
descriptions of what the individual can't do, what needs "fixing," or what's
"different." Once an individual gains a reputation for being strange or
offensive (demanding, aggressive, etc.), a vicious cycle begins. People expect
the "deviant" behavior, respond to the person with aversion or rejection, and
the individual never has the opportunity to overcome the reputation.
When introducing an individual with disabilities to a community member,
there is a delicate balance to be struck. We need to provide enough
information about the person so that the community member knows what to
expect or can respond to the individual's needs. We must also avoid giving
information that's not really useful and might damage the individual's image
and future relationships. The need to respect people's reputations is so crucial
that it deserves careful attention.
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When it comes to image, people with disabilities already have one strike against
them. It is far too easy for a person who is already seen as "different" to gain a
reputation that keeps others away, especially when the difference is already or
easily apparent.
Anyone can be introduced in a way that is both realistic and that emphasizes his or
her best qualities. Of course, we need to provide adequate information to someone
who is going to spend time with an individual to insure everyone's comfort and
safety. It helps to have new people get to know each other around familiar faces
before they spend time alone. If someone is going to be responsible for an
individual who needs medication, has seizures or a physical condition that could
require assistance, the person needs to know exactly what to do to manage a
potential situation. This would also be true regarding individuals who might do
something to injure themselves or someone else.
However, we need to guard against being overprotective or exaggerating the
potential danger, especially when we're introducing a person for the first time. For
example, we don't need to explain that a man had started a fire playing with
matches when he was five, even though the incident is in his case history and has
become part of his reputation. We don't need to tell everyone that he is known to be
aggressive and has other behavior problems. Rather, we would first describe the
things about him that we think the other person would like. (He has a great sense
of humor, he wants to learn to cook, and he's a big sports fan.) Then, if we thought
there was a chance he might get upset while with that person, we would let the
person know that he has recently been striking out at whoever is within reach
when he gets frustrated. We would let the person know what to do, or assure them
someone will always be there the first few times. We would also setup the
conditions as much as possible to eliminate frustration.
There are things we can do to let others know that we value people. People may be
impressed that the individual knows someone willing to make the effort to
introduce him or her to others. Sometimes, quantity helps. If three staff or family
members attend an event with a person with disabilities, it makes a powerful
impression-here is someone who has a lot of fiends who like to spend time with
the individual, and this person is worth knowing.
Michelle is 17. She is labeled moderately to severely retarded, and uses only a few
words. Although she can take care of most of herprsonal needs, she needs
prompting to complete tasks like brushing her teeth or taking a bath. She is terrified
of dogs, cats and other small animals.
When a staff person introduced Michelle to two non-disabled girls who came to visit
at the group home, the only information she provided about Michelle was that she
likes music, has some favorite tapes, loves to put on make-up, and made cookies
for their visit. She also made sure that Michelle showed the girls her communtiation
book which had pictures of her family, teachers, friends, favorite foods, etc. She
decided that she would also tell them about the fear of animals if they decided to
go for a walk.
39
Patrick, who is 19 years old, has seizures. Sometimes he makes strange
hand movements and he has a number of other unusual habits. A couple of
other teenage boys were going to meet him and go bowling. His group
debated along time on what to tell the boys. Should they tell them "nothing"
and just see how well they liked Patrick? Or should they tell them "everything"
Pattick might possibly do that might seem bizarre?
The person who introduced them finally decided the other boys should know
that it was possible that Patrick would have a seizure, and what the seizure
might be like, and that they shouldbe assured that the staff person would be
there to manage things. The first time Patrick flicked his fingers in the air, she
told the boys what that meant-that Patrick was having a good time.
Tony became a member of a local service organization. However, the group
already had a number of members with disabilities. One of the first events
they had after Tony joinedwas a steak-fry and horseshoe night. lf you were
a member, you got a free steak if you brought a guest as a potential metier.
Tony brought three guests: his staff person, his former staff person, and
another memberofhis Friends gruup. All of his guests were young women.
Tony and his guests received a lot of attention from the other members.
How Do We Know How Much Support is Necessary?
The best guide to what kind and amount of support is needed in each situation
is the individual and the community person or group involved. If the person
with disabilities is not able to communicate what they need to feel
comfortable, if they have limited experience in social situations, or if they may
loudly demand attention or food, then it's up to us to anticipate how the
individual might respond in a given situation. We need to figure out how
others might react to him or her and plan for the best level of support (neither
too much nor too little).
We also need to anticipate the needs of the community person or group. Some
people are very out-going, capable of handling a wide variety of individuals
and situations, or even already have a great deal of experience with persons
with disabilities. Others are more timid or hesitant, and may need more
support from staff, especially in the first few meetings.
Planning the amount and type of support to provide is not always an easy
task. No matter how hard we try to plan for success, there is still a risk that
things won't work out as we planned. This is not cause forgiving up. It is an
oppotiunity to ham what didn't work and try again.
While we want to emphasize the importance of thinking through each strategy
for potential problems, our tendency may be to anticipate problems based on
the individual's behavior in a service setting. Research has shown that
sometimes "institutional" behaviors are not good predictms of behavior in
community settings with non-disabled community members. When an individual
has the opportunity to participate in interesting activities with regular people, the
"institutional" behaviors often disappear. When we give individuals the chance to
be at their best, more often than not, their abilities surpass our expectations.
We have also been surprised at the genuine caring and regard shown by many
community members. Rather than thinking we need to train them to be more like
us, to handle certain behaviors the "right way," we can often trust them just the
way they are. They are ofl.en quite capable of figuring things out for themselves.
Whatever they do naturally in their activities and communications is often just
fine, and is just what is wanted and needed.
Introducing . . .
Individuals can be introduced to others on a one-to-one basis or to a group.
Making One-To-One Connections
A method that worked extremely well in the Friends project was the use of one-to-
one introductions. Staff identified people's interests and generated possible
connections. They looked for people they might know who shared these interests.
They thought of places they might look for people who might like to get to know
people.
Once they identified people and places, they asked. When they found people who
were interested in getting to know people as friends, they introduced them. They
worked through the areas presented here-what was best to say before the initial
meeting, how to best ensure success, etc.
Linda's group wanted to find someone who wukicome and visit her regularly and
perhaps take her out a way from the grouphome. Marie, one of the staff who was
a member of her Friends group, decided to ask the women ather church who were
the presidents of all the women's circles. She attended one of their meetings and
explained her request. They described Marie's request in the minutes of their
meeting. Eleanor, a member of the church, saw these minutes and decided she
might be interested in meeting Linda. Marie arranged for her to come and meet
Linda at the group home.
Michelle's group wanted to find some friends her own age for her. Nothing was
happening at her school regarding integration. However, her class aide was a
member of her Friends group. The aide put a notice in the school bulletin asking
for students who might want to become friends wtih a special education student.
The group got four replies to the notice. Two students wanted to be paid. But the
other two girls who responded did want to meet Michelle. They came over to the
group home, met and liked Michelle, and planned to come regularly to visit her.
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Introducing an Individual to a Group
Becoming a member of a group often adds to a greater sense of real
community participation and a greater sense of belonging. Introducing an
individual with disabilities to a group of people requires the same kind of
forethought as introducing someone to just one person. Sometimes the best
way to do this is h identifi a member of the group, such as the instructor or
president, who can be the first connection. This person can then include the
individual in the group and act as a bridge-builder to other group members. If
the group is formally organized, like a club or service organization, an
approach to the group as a whole might work.
April has lots of energy and kwes to get out and meet people. Her group
decided to investigate a local community service organization that sponsors
frequent social get-togethers as well as participating in community events.
April askedthat someone from her friends group "check it out" for her before
she decided to go to a meeting.
One member of April's group, Barbara, attended a meeting to get a feel for
the group. At the meeting, Barbara explained she was there because a friend
of hers was considering joining and she had come to the meeting to check it
out. The group was very impressed that April had friends like Barbara.
Barbara told them that her friend had a mild disability, was really a lot of fun,
and enjoyed meeting people. The group was very enthusiastic about meeting
her.
After hearing about the meeting, April decided she would like to see for
herself, so she went to the next meeting with Barbara and Carol, a woman
who weds with her. Afterthemeeting, groupmembersspontaneouslycame
up to introduce themselves. April had a chance to meet a number of the
members, hear about the group's activities, and decided to join. Everyone
was very gracious and welcoming toward her.
The group has something going on almost every week, and a couple of staff
people have accompanied April to events. The scheduled activities are so
appealing (a pig roast, a yacht trip, a steamboat ride) that it became fun for
staff to "argue"about who was going to accompany April. Her patiicipation
was more than just "community outings"that were part of the job staff had to
do. Instead, her group membership meant fun events that the staff could also
look forward to going to. Carol is thinking about joining herself because it is
such a fun group.
42
Continuing
Support
Let me tell you the secret that led me to my goal.
My strength lies solely in my tenacity.
-Louis Pasteur
No problem is so big or so complicated that it can't be run away from.
-Linus (Charles M. Schultz)
Beyond Acquaintance: Supporting and
Nurturing Relationship and Real Friendship
Having opportunities to meet people is an important first step to developing
meaningful, supportive relationships. However, it is just the first step. People
need time together to get to know each other better and to share experiences. from
there, friendships develop.
There is no recipe for turning a casual acquaintance inta a true friendship. As we
think about our own relationships, most of our acquaintances don't become close
friends. When they do, when two people really do "click" as fiends, there almost
seems to be an element of "magic" involved. In working on friendships for persons
with disabilities, we can't deliver or program magic. What we can do, however, is
have people meet as many people as possible. We can support the connections
growing. And, we can promote as many and every occasion for magic as possible.
Being a Friend (Or: It Takes Two....)
Few relationships can grow strong without reciprocity-the give and take in our
associations. People with disabilities are often "excused" from contributing because
of their disability. Too often, we unconsciously overlook the possibility that a
person with disabilities has something to contribute. Helping individuals learn to
reciprocate, how to be a ftind, maybe the most important support we can provide.
Reciprocity means giving, receiving, sharing, cooperating and communicating.
Most children begin learning about how to be a fiend very early. Often children
with disabilities don't learn as easily as other children do, even though they may
have the same opportunities. Parents or others might overprotect them, anticipate
their needs, and solve their problems. These children may find it very difficult to
relate to others in two-way relationships. They may expect to have their own needs
met without much thought to the other person's needs and may demand more
attention than the other person is willing or able to give. Over time, people with
disabilities may come to the conclusion that they have nothing of value to offer and
can only act as the receiver of help and attention.
The best way to learn about being a friend is by being one. Learning "social skills"
without having any social relationships is like reading the bicycle "Rules of the
Road" without ever getting on a bike. Just as you can't learn how to ride a bike
without actually getting on one, no one can learn how to get along with other people
without having relationships. Social skills training programs are likely to keep
people forever reading the book without ever getting on the bike. Meeting and
spending time with people in the community is the best way to learn how to act in
social situations. Regular community people are the best "teachers"--not service
professionals or social skills training programs. Parents, teachers and service
workers can help the individual learn about being a fiend by modeling and talking
about how to be a friend, and by encouraging the individual to reciprocate in his or
her relationships with them and with others.
45
If the person with disabilities is limited in his or her ability to reciprocate,
someone else may have to carry out acts of friendship on his or her behalf.
This doesn't mean that the person can't be a friend-it just changes the
appearance of the friendship. It might mean that a staff person keeps track of
family birthdays, and sends cards on the individual's behalf. It might mean
that a parent continues to tell his child's fiend how much that friendship
means, even if the child can't say so themselves.
The most satisfying relationships are two-way. People with disabilities, even
very significant disabilities, can be iliends as well as huve them. Because they
are givers as well as receivers in such relationships, individuals with
disabilities can gain a sense of self-worth that they don't get from one-way
relationships.
Learning to be a fiend can take time, and there is some risk to developing
close friendships. There is no way to learn to ride a bike without falling, and
there is no way to experience friendship without making mistakes, and
sometimes getting hurt.
When two non-disabled classmates were coming to the group home to visit
Michelle for the first time, staff made a point of talking to Michelle about her
friends' visit. They helped her make cookies, straighten up her room,
prompted her to answer the door when the girls arrived, and to show them to
herroom. Theycontinuedto talkaboutthe newfriends, what Michelle might
like to do with them, etc., throughout the following week, in anticipation of their
next visit.
Linda does not communicate with words and she can't write, but her focus
group decidedthat she should send Christmas cards to her family. One staff
person offeredto sign the cards andaddress the envelopes. At Easter, they
sent cards again and the staff person wrote notes on each one-what she
thought Linda would say if she could write.
Why bother sending cards when the family knows that Linda can't write?
When she ddesn't know she's sending them? ln Linda's case, the Christmas
and Easter cards brought a barrage of contact from family that had been out
of touch for a long time. To her family, the cards made Linda seem more like
a regular family member. She became someone who contributed to the
family. Her sister wrote, `When I got your card today it made me feel real good
. . . little things like receiving a letter from you brightens my day. "
46
Vicki's someone who is often quite demanding of other people's attention. Her
focus group realized that she had mostly "one-way" relationship, and wanted
to find ways that Vicki would do things for others, especially her family.
Vicki felt very dose to her family, but d seemed they did not share her sense of
cbseness. They sekbm invited her home for a visit and sometimes celebrated
holidays with out her. Vicki talked about how she missed her family andwanted to
see them. someone suggested to her that she invite her family over for dinner and
cook it herself. She had never done this before. She did, andthe dinner was a great
success.
Since Vicki likedto sew, the staff person who helped her with the dinner helped her
purchase a sewing machine. Together they have completed several projects.
Vicki made a pillow which she gave to her mother, and some bibs for hersister's
new baby. Vicki is proud of her work.
Vicki was also introduced to a friend who shared her interest in sewing. This friend
suggested she enter another pillow which she had made in the County Fair craft
competition. However, Vicki couldn't take it up to the Fair on Entry Day because
of her work schedule. Her friend offered to take it for her.
Demonstrating How It's Done
One of the most effective ways to support people in relationships is to demonstrate
for others how it's done. Others will relate to persons with disabilities based on the
example we set. We can demonstrate very powerfully to others how to successfully:
o engage people in conversation
o get somebody to stop doing something irritating
o have someone smile
o react when someone raises his or her voice, etc.
People will learn how to act by watching us. If we speak in a patronizing tone, they
will learn to do the same. If we do everything for someone, others will learn the
person is dependent. If we constantly treat someone as a "client," others will treat
them as someone who is "different" rather than a member of the community.
Greg Iovedmusic, especially country-western. Kathy, who workedwith him, had
a friend Neal who was a professional musician and who taught guitar. She called
Neal and asked if he would be interested in meeting Greg. The three of them set
a time to get together and take a walk on a Sunday afternoon. Kathy introduced
Greg and Neal, walked with them, and they all chatted together. Kathy helped Neal
understand what Greg was saying. Neal agreed to get together again and go to
a concert together, and Greg wanted to come to one of Neals concerts.
47
.
Don't Stop Encouraging
Even afker people have met friends, or joined groups, more experiences of
discouragement or disappointment can occur. Other new experiences also
must be faced. Often, people continue to need to be encouraged. Not just the
person with disabilities, but also the community friends or groups, may need
assistance in exploring new territory.
Tony is somewhat hesitant to try new things, and usually when asked if he'd
be interested in Something new he says, "I have to think about that." When
it was suggested he become a member of a local service organization, he did
think about it for a few weeks and considered whether it was worth the money.
He dti finally decide to pin.
Once he had paid his dues and taken the pledge before the whole group, new
opportunities to try new things arose. At a club steak-fry, he was asked if he
wanted to play horseshoes. He initially said, "No, "then "Maybe,"and then a
few minutes later, "All right, I'll play."
One of the major fund-raising events this group sponsors is selling drinks at
a local medieval fair. When asked if he wanted to do this, Tony said "no." But
his group just continued to tell him that it would be nice for him to help out.
Tony attended a group meeting held the week before the event started. He
coukl tell from the amount of time spend on discussing the fair, that is was a
big deal for this group. He realized that it was important for the event to be
successful and they did need help. By the end of the meeting, he had agreed
to help out and asked to sign up for a shift.
Walking around and talking after the meeting, he told people he was going
to help out at the fair bu the expressed concern about doing a good job. One
of the members told him to not worry, just sign up for the booth that he was
in charge of and he'd show him just what to do-it was easy.
Solving Problems
When persons with disabilities start to meet others and become part of their
communities, problems will arise. Many people don't know how to deal with
or are uncomfortable with some of the differences presented by the individuals
with whom we work.
The only way to overcome these problems is for both parties to face them and
work out their own solutions. Staff can, of course, often be of great assistance.
But community persons and individuals with disabilities also can be quite
creative, when given the room to come up with their own solutions.
48
Things can go wrong, and maybe do more often than not. Trying something new is
always risky; change is always uncomfortable. There is power, however, when the
problems we are challenged to solve are problems concerning what's really most
important to people. There is excitement when the problems concern real
relationships and aren't the same old problems of rules and systems. Working in
an area that was really important, that really mattered to people, provided much of
the greatest satisfaction for staff participating in the project.
There were some new things that April was reluctant to try. One was pining a local
service organization. She asked the members of her Friends group to check it out
for herf imt, and they did. She finally went to a meeting and dectied to join. Staff
agreed to assist her in going to events the first few times until both she and the
group were familiar and comfortable with each other.
Sh estarted out her membership by going to a couple of events with the organization,
including a riverfront festival and another festival in which she helped out at their
booth. However, a major issue arose. April consideredthe club members "her"
friends, and she did not want any staff to accompany her. She wanted to go to club
parties on her schedule, not on the schedule of when staff could take her and bring
her back. She started to refuse to go to events.
A member of her Friends group that was not a staff member offered to take her to
an evening social event, and it took a lot of encouraging just to have her go. The
staff is still working on how to best support her membership until group members
can support her on their own.
Are We There Yet?
Each of our communities is different today than it was a year ago. People have
moved in and out of our lives. Our own friendships and relationships continue to
take time and work. Having an individual enrolled in one community education
class, an integrated recreation program, meeting one person, or joining one
organization, is not enough.
After people join, or meet, or attend, new problems and challenges arise. Once
people are introduced and like each other, the job's still not over. After a few times
of being together, other problems can arise, After someone has joined an
organization, they may become reluctant to keep going. Anew fiend may become
upset after some "bad" behavior, With someone whose behavior is difficult to
understand, the new acquaintances may not know if they're important or not to the
person. Being successfully connected and maintaining friendships is never
something that will be totally complete, finished, achieved.
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For all of us, being connected to others is ever-changing. For people we work
with, establishing and maintaining friendships will continue to be a challenge.
Even after friendships become strong, we can support additional ones. The
need for work will continue.
Things to Watch Out For
There are ways we can support individuals in their relationships that can help
pave the way for fi-iendship to happen. There are also some common obstacles
that we can help people get over.
General Lack of Experience with Relationships
Many individuals with disabilities have little or no experience relating to
non-disabled people other than families or staff. Due to a lack of experience,
people have not had many opportunities to learn social rules and practices in
natural settings. Learning social skills in a class at school or at the adult day
program can help, but it's not the same as being in relationships and learning
as you go. Individuals may need continuing help to learn how to be with
people outside of the service system. People may need our help to learn to
contribute and what it means to be a friend. Community people may need
suggestions about how they can help the individuals understand what is
expected in certain situations.
Often people with more severe handicaps have the least experience with
relationships. Sometimes their appearance or actions are very distracting or
sometimes even disturbing. Persons with more significant disabilities may be
the most difficult to connect and support. Efforts may need to be more
creative and intense. Again, these individuals may be the most in need of
relationships with people who care.
Ollie lived at home with his family in a small town with a strong Nonvegian
heritage until he was 40 years old. Then he Iivedin a state hospital for 31
years. He has been living in a small group home for a little over a year.
Because Ollie does not talk, it takes time to get to know him well and to
understand the ways in whioh he communicates. Menhws of thegroup felt
that Ollie5 limitations wouki affect the likelihood of others wanting to get to
know him. Because Ollie has limited ways to express his fmstration and
occasionally will act defiantly, group members were concerned that others
would not undemtand Ollie's expressions of frustration or contision.
One method staff have pwsued is having Ollie go with one staff person to a
boalcoffee shop at the same time every week when other "regulars-his age
are there. The staff person also took Ollieto a bcalbar, andtheywerequite
proud of him going right up to the bartender, giving his money, and indicating
he wanted a beer.
.
.
50
Limited Interests
The more interests a person has, the more activities he or she is likely to enjoy, and
the more he or she is likely to have in common with other people. For some
individuals with disabilities, limited experience in the community has left them
with very few areas of interest. Sometimes, because the range of a person's
activities has been so narrow, or his or her life experiences so limited, one interest
may have become almost an obsession or a Yetish".
Sometimes this singular interest might be seen as strange or inappropriate by most
non-disabled people. Most of us know individuals with disabilities who talk almost
exclusively about one thing (a girlfriend or boyfriend, a favorite rock star or athletic
team, etc.).
When an individual has one prevailing interest, that might be the place to start in
finding ways for him or her to share time with non-disabled community members.
However, another avenue is also possible: giving the individual opportunities to
explore a wider range of activities in order to help him or her have a more
in~resting life. (Apart from the topic of having friendships, assisting individuals
with disabilities in building more interesting lives is a worthwhile objective!)
Henry has spent most of his life in large institutions. He loves trains. He has a train
whistle record which he plays for anyone who will listen. When he talks about
trains, he makes train sounds. His group was in a quandary trying to decide if it
would be a good idea to pursue some activity related to trains, or if it would be best
to try to interest Henry in something else.
The group decided that as bng as Henry had this powerful interest, it would make
sense to find out how other train-bvers shared their interest in the hope of finding
someone who coutiget to know Henry. At the same time, this new frkndcouti
expbreotheractivities thatmghtcapture Henry 'sincerest. Witha wider varietyof
interests, Henry couldhave moreo~riunities togettoknowpeople, andpeduips
trains would become less important in his life as his inten?st in other areas grew.
Confusion about What a Friend Is
People with disabilities are sometimes confused about what a "friend" is. There can
be many reasons for this confimion. For example, staff often show people the same
kind of regard and caring as a friend. Sometimes staff are the only people who care
about an individual. While paid staff can be friends, usually their contact with the
individual changes or ends when they are no longer paid staff. When staff are seen
as friends, the person may get confused about the nature of friendship. (Are fkiends
around only when they're scheduled. When a stafFperson leaves for another job,
does that mean he or she doesn't like me anymore? Can fiends "quit"? Do friends
only like me when I do what I'm supposed to?)
51
Another source of confusion is that sometimes when an individual with
disabilities meets someone who is friendly, the individual sees the person as a
"friend for life." Many individuals walk around claiming certain people as
their "friend," even though they just met the person once.
A real friendship is based on people spending time with each other because
they want to and they enjoy being with each other. Individuals who have
never experienced a real friendship may need some help understanding what
they can expect from a friend.
Sometimes persons with more mild levels of disability may express the most
confusion. Their awareness is often acute that staff are paid to be with them.
They may long the most for real friends-people who just want to be with
them for themselves. Any indication of rejection by regular community people
is felt deeply.
At the same time, for these individuals, specific staff efforts to help individuals
meet and become friends with regular community citizens may seem like
interference. Why should staff be helping? People want to find friends on
their own and to have their own fiends. Sometimes they don't even want
staff to meet the people they consider friends-they want to keep their worlds
separate. In these cases, efforts to provide genuine and needed support must
be non-intrusive and non-interfering.
Kay has lived in many different foster homes, and been in and out of
institutions. Her relationship map indicated nobody in her life except staff and
family. At her first focus group meeting, Kay was sure that she didn't need
any new friends. She kept saying `I don't need any friends. l have Dan and
Nancy. " These were her two staff. Soon after the first meeting, Nancy moved
out of state. By the end of the year, Dan had changedjobs.
Kay spent a few months getting to know Fran, who became her friend. They
played tennis, did other things together, and Kay spent the night at Fran's
house. After a few months, Kay oneday saidto Fran, "I want to have more
friends. Let's start working on it."
Alienating Potential Friends
Sometimes an individual has very few people to count on, or even only one.
Those people can become "everything," and the demands the individual places
on those relationships can be overwhelming. The individual may want or
expect too much of the person's time or attention and may end up alienating
potential fiends. That one person has to serve as the equivalent of what 20-
30 fiends and acquaintances provide to a typical person.
52
Some individuals have experienced so much rejection in their lives that they have
learned not to get too close to anyone, or have developed behaviors that insure that
no one will get too close to them. In "self-defense," they might reject potential
friends before they are rejected again.
Kay has experienced a great deal of rejection in her life. She was removed from
her family's home and bounced from institution to foster placement andback. She
has a reputation for testing people she meets with offensive language. It
sometimes seems like she is trying to push people away. Instead of assuming that
Kay's behaviors were an indication that she didn't want to meet new people, her
Friends group wondered if this was Kay's way of protecting herself from being
rejected.
Fran got to know Kay over the course of theproject. She soon discovered that Kay
usually started using offensive language when their time together approached its
end. lf Fran took that opportunity to talk about what they wouldn't next time, the
bad language decreased. The more Kay came to trust that there would be a "next
time," the less necessary it was to protect hersetf by pushing her new friend away.
Within a few months, Kay was readily meeting other people. When staff took her
out with their friends, the friends thought she was very funny and really enjoyed
being with her. The staff, her parents, and even Kay herself say she isn't the same
person she was a year ago. Kay says, "I'm doing great. "
53
The Possibility of Rejection
It's not always possible to protect the individual from rejection by people they
will meet in the community. Some non-disabled people are not sure how to let
a person with disabilities know when enough is enough, and may simply
withdraw altogether. (They "disappear in the night.") We might need to be in
communication with the community friend regularly and early on when we
know someone may be dificult to be friends with. We can be sensitive to signs
that things aren't going well in a relationship, and do what we canto help
work things out. We can't change the way people are, but we can let
community people know that it is all right to set limits and conditions. We
can also help the community person and the individual with disabilities work
out and understand those limits and conditions.
Dot met a woman who lives in her apartment building. The woman was
friendly, and Dot liked her immediately. Dot began hanging around in the
hallway outside her apartment, waiting for her to come home from work and
for the chance to talk to her. When the new friend would explain that she had
something to do or needed time by herself, Dot would write her notes and slide
them under her door.
When the woman started becoming annoyed with all the attention, she
contacted one of Dot's staff, who setup a meeting at which Dot and the friend
worked out some ground rules: Dot would not wait in the hall for her friend
to come home from work or leave notes under her door. Certain times were
established when it was O.K. for Dot to visit if she called first, etc. The staff
helped Dot stick to the ground rules.
Protecting the Individual from Abuse
We may also have to help the person with disabilities see when he or she is
being treated badly or being taken advantage of. There is some risk in any
new relationship. The relationship might end. The new friend might take
advantage of the person with disabilities. We can:
obe selective about the people we introduce to the individual;
o support the individual in any new relationship by talking about the new
fiend and paying attention to signs of discomfort;
o trust the individual' sjudgment;
o try to be fair in our judgments about the individual's friend(s)-get the
facts;
o make sure the individual has opportunities to meet a variety of people,
so that one person is not the "only option."
54
Assisting
Others
Always waiting unto)din the souls of the armies of common people, is stuff better than
anything that can possibly appear in the leadership of the same.
-Walt Whitman
Imagine all the people living life in peace. . .
Imagine all the people sharing all the world.
-John Lennon
.
Assisting Others in Meeting and Becoming
Friends with Persons with Disabilities
The range of attitudes, experiences, and beliefs of community citizens toward
individuals with disabilities is extremely wide and is as individualistic as people
themselves. More individuals with disabilities are living, working and attending
school in the community. As a result, people's experiences are changing. Typical
citizens seem to have a greater awareness of persons with disabilities; this
awareness is creating a greater interest in individuals with disabilities. Often it
seems that the swvice system itself is much more of a problem than the
community." People who have become friends with individuals with disabilities
report the experience as rewarding, fun, and enjoyable-just like any friendship.
The first and probably most effective way to educate people and to change the
nature of our communities is direct inclusion. It is only when non-disabled people
have a chance to reallyget to know someone with disabilities that everyone will
learn the day-to-day, "nuts and bolts" experience of relating.
Traditional efforts to"educate the community" or "increase awareness" have
included talks to local organizations about people with disabilities. Another
common activity is the "walk a mile in his shoes" approach such as having students
pretend to be disabled by using a wheelchair for a day. There might be times when
these efforts are useful; however, they are not likely to give non-disabled pereons
the opportunity to meet and get to know an individual who can teach, firsbhand,
that people with disabilities are just people and have an enormous amount to
contribute.
The Basic Strategy
In our work with Friends, assisting community members was a critical part of the
connecting process. Some of the strategies we used with specific individuals are
described in the examples in this manual. Many of the strategies for meeting
individuals followed these basic steps:
o Meet the community person, such as the local music store owner, the
librarian, or the minister.
o Explain that you know someone who is interested in music or history or
church activities, and is interested in meeting other people who share this
interest.
o Ask for and obtain the community person's agreement to help;
o Then introduce the person with disabilities to the person who shares the
interest.
For introducing a person to a group, we followed these steps:
o Go to a meeting ofa community group or organization to check it out and talk
to the members before they meet an individual with disabilities.
o Support the individual and the community members in whatever way is
necessary to help insure positive experiences for everyone concerned.
57
Introduce People One-to-One
We found that people were very open to being introduced to individuals with
disabilities when they were asked personally and individually. Ask people you
know. Ask people you know who else they know.
People Are Waiting to be Asked
You have nothing to lose in asking. The worst that can happen is that
someone says no. You may be very pleasantly surprised.
Ask People Who Have an Understanding of Community
It helps to think through the right people to ask. Some people are more open
to meeting new people than others. Some individuals maybe much more
willing and open to the idea of meeting a person with disabilities than others.
They may have an instinctive sense of "community," whether they know that
they understand it or not. Look for "like-minded" people.
It also helps to connect people through like-minded groups and organizations.
These are groups and organizations that already have some sense of and
commitment to community. We found churches to be very open-not only the
ministers, but also church groups and individual members of the
congregations. A number of community service organizations readily
considered the opportunity of new members.
Being a Model
Community members will often find it easier to get to know and feel
comfortable with persons with disabilities if staff or others familiar with the
person come along, at least initially. The staff can assist in:
o understanding the speech of someone who is diflicult to understand
o interpreting the communications of someone who has no speech
o meeting other group members
o successfully managing out-of-the ordinary behaviors
o letting the community members know what to expect
o making sure the person is getting what they need
o helping toward the fbture independence of the relationship
At these times, often the most powerful "teaching" method is for people tn
observe whatever the staff does. If the staff person talks to the community
member about the person with disabilities in front of their face, as if they
could not hear or weren't there, the community member will learn that it is all
right to treat people as if they were invisible. On the other hand, if the staff
person conscientiously includes the person in the conversation, community
members will feel more confident doing the same. They will learn that
speaking directly to people is natural and expected.
Of course, people will always discover their own ways to relate to each other. Some
will be quite beyond anything the staff expected or know. However, it is always
crucial to remember that "we teach by example."
Watch Out For. . .
Many human service practices have segregated people with disabilities and
emphasized their differences. When services focus on a person's &s-abilities and
need for professional care, it is difficult for typical citizens to understand how they
could be a fiend. These practices have contributed to misconceptions that create
obstacles when we try to build relationships between non-disabled community
members and people with disabilities. We've made people seem "special," different,
and needing our professional knowledge and skills. Even when we emphasize that
they are special in a good way, the individuals still stand out as "different" from the
rest of the community.
"Special" Activities and Programs
Most well-organized communities provide special programs for people with
disabilities. Many individuals enjoy these programs, and without them would not
have the opportunities the programs provide. However, when segregated programs
are the only way a community includes people with disabilities, individuals are
being denied access to the real community and real opportunities for relationships
with each other.
Even in some organizations that have welcomed individuals with disabilities, those
individuals can be unconsciously grouped and treated as differento sense of "us"
and "them" can develop, rather than a sense of "all of us together." This tendency is
one of the drawbacks to integrating a number of individuals inti one community
organization. Even a small number of people with disabilities can be too many for
an organization h assimilate and treat as regular members. The individuals with
disabilities are at least physically included, but it becomes too difficult for each
person to contribute and to be known for himlherself. They become "one of them."
The "Noble Volunteer"
Another way that some community people sometimes relate to individuals with
disabilities is out of an unconscious sense of pity or charity. This behavior can take
very subtle forms, communicating messages such as, "oh, you poor thing. . ." or
"I'm a good person for spending time with you." Being sympathetic to another
human being or sharing with someone who is less fortunate is one of the ways
people can show that they care, and services for people with disabilities have relied
heavily upon volunteers and charitable giving for their very survival. However, we
must recognize that when someone acts out of pity, or out of a desire tn do a good
deed, the role of "giver" can create too much distance for a genuine friendship to
develop.
59
This is not to say that services should abandon the use of volunteers or
community fund-raising. It is to say that we must be carefid not to substitute
volunteers for friends. Even though people are invited to be friends or even
want to be Mends, their initial behavior might be tinged with a subtle attitude
of pity or charity. We have particularly noticed a tendency toward this kind of
attitude when the person has more severe disabilities-when he or she has a
physical disability, uses a wheelchair, or can't talk.
People can be assisted, however, in more fully knowing and appreciating the
individual with disabilities. They can get past the initial reactions to become
real friends. (For more information about the role of volunteers see page 74.)
When Eleanor was recruited to visit Linda at the group home andget to know
her, the members of her focus group were very much aware of the issues
about volunteer roles. Because Linda has significant physical disabilities,
anyone who wouldspendtime with her wouldneedto knowaboutherneeds,
andthegroup recognized the need forsome orientathn. However, the staff
also recognizedthat in orderto support Eleanor and Linda becuming friends,
they hadto minimize the formality of the situation. No time schedules were
required and there was no paperwork for Eleanor to repot there volunteer time.
Staff referred to Eleanor as Linda's friend, not Linda's volunteer.
Eleanor was also a volunteer with R.S.V.P. (Retired Seniors Volunteer
Program), who are very strict with accurate recording of volunteer hours.
After Eleanor had been visiting Linda for several months, the local R.S.V.P.
coordinator heard that Eleanor was "volunteering"at the group home. She
calledupEleanorandaskedherwhyshe wasn't reporting her hours. Eleanor
replied, "I'm not a volunteer, I'm a friend. "
The Novelty
Sometimes when someone starts "hanging out" with a person with disabilities,
it's very interesting at first. The person and his or her characteristics or
quirks are a novelty. It's important to support the community person in really
appreciating the individual as a whole person, and also assist the person with
disabilities in contributing to the relationship.
When the Individual Isn't "Disabled Enough"
Sometimes community people have the hardest time warming up to the
individuals who have mild disabilities. These individuals do not fit the image
of the dependent, needy recipient of good will. Non-disabled people may need
extra support in their relationships with individuals who are vocal,
independent, assertive, sometimes obnoxious or controlling.
In some cases of relationships with individuals who are "more like us" it is
easy to have it look like the person is included, when they're really not. Many
times it is easier to be an acquaintance rather than a real friend.
60
Common Misconceptions About Communities
Community people are not the only ones with misconceptions. Human service
professionals have some erroneous ideas about their communities, too. It's easy to
let these "myths" discourage us from trying to get individuals connected in the
community-to not try, or to give up when it gets a little hard.
Underestimating the Community
"That might work in St. Paul, but it'll never work here!"
"They don't want our clients around."
"They think all people with mental retardation are 'crazy'."
"They wouldn't know how to deal with her manipulative behaviors."
MYTH "Communities won't welcome people with disabilities."
It is not true that most communities won't welcome people with disabilities. In fact,
in most communities, it was easier than we anticipated to find individuals and
organizations with a genuine interest in getting to know people with disabilities.
A service organization in a rural suburban community was reachedby a group
that coordinated recreational activities for persons with disabilities. The group
asked the service organization if they had members that would be willing to meet
individuals with disabilities and become friends with them. The two groups would
work together to match peeple up. Even though the servke organization was not
large, fifteen men offered to meet people and explore becoming friends.
When April joined a local servtie organization, they enthusiastically welcomed her.
At the first event she attended, the vice-president came up to the friend who had
accompanied her, and askedher directly, "Is there anything we need to know about
April?" She was sincerely interested.
For years April had been talking non-stop about two things: men and complaining
about spending money. At this event, April started complaining to the vice-
president about money, saying "I don't like to pay." Jean, the vice-president,
straight forwardly replied, "I don't either. But sometimes, we all have to. " April
stopped talking about it.
When April starled talking to the vice-president about men, Jean very naturally
askedherabout herpreferences. She answeredApril's questions aboutdifferent
men in thegroupandtold herwhomshe wou&ln'tiike. April asked Jean to find her
someone, but Jean said Wo, I can introduce you, but you're going to have to find
them yourself. "
When Jean introduced April to any man in the group, they handled her direct
questions in a natural way. No, they were already married or they already had a
girlfriend. No, they wouldn't like to go out, but they would keep their eye out for
someone who might like her.
61
MYTH "`Regular' People wouldn't know how to handle her without a
lot of instruction."
Often community people don't see the behaviors we see as "inappropriate" or
"manipulative." Sometimes, the individual behaves differently in a community
setting with a typical person. Sometimes the behaviors are there, but aren't
as much of a problem for community people as we expect them to be.
Sometimes the community people don't even see the behavior as "a problem."
Vicki had a reputation for inappropriate behavior in her relationships with
co-workers at the sheltered workshop. In fact, that was one of the reasons
she was considered "notready"forcomrnunity empbyment. It was also one
of the problems staff identified as an obstacle to making friends with regular
community people. However, when Helen, a staff person, took Vicki home
with her for an evening with hercollege-age daughter and one of her friends,
Helen was very surprised. Vicki acted just like one of the girls. "
Underestimating the Need for Support
Sometimes we expect too much from the community. Because of our belief in
the community's capacity for including people with disabilities, we might
hesitate to interfere with the individual's independence, even when he or she
might need our support. It is important to think through and provide the
support that will best assure success without interfering with the capacities of
either the person with disabilities or the typical citizen.
When Jay said he was interested in helping coach a T-Ball team, one of the
people in his Friends group contacted theprogramdirector andgot the name
ofawach whoneededanassistant. The coach was hard to reach by phone,
except at night, so the first plan was to leave a message for him to call Jay
about the job. Staff realized, however, that because ofJay's speech problem,
the coach might not be able to understand what he said. They also realized
that Jay might not be able to understand the informatkm from the coach. It
was decidedto arrange forJay's roommate to help him call the coach andbe
the "interpreter. "
62
Service Practices that Foster Community Understanding and
Acceptance
The following is a checklist of service practices that can help foster the genuine
understanding and acceptance of people with disabilities that opens the door for
friendships. Some of the items have been discussed elsewhere in this manual, but
they are collected here.
Introduce. . .
o Treat each person as an individual, and introduce people on an individual
basis.
o Avoid using jargon and initials (CP, MR, DD, SIB, TBI, etc.)
o Emphasize the characteristics the individual has in common with all people-
we're all human beings.
o Don't share information that points up the individual's weaknesses or
problems unless it is necessary in that situation. Don't "gossip" about what's
wrong or diflerent about him or her. When this information must be shared,
do it as positively as possible.
o Don't exaggerate the individual's need for professional help.
o Think carefully about the situations you choose to introduce individuals to the
community, and be sure you are providing enough support for the experience
to be successful for all parties.
Connect. . .
o Teach by example.
o Treat the individual with the respect you would give anyone of the same age,
in public and in private situations, and help him or her find ways to spend
time with other people of the same age.
o Support individuals with disabilities ta meet and get to know non-disabkd
people in regular community activities.
o Give individuals the chance to do what they can, and find ways to help
individuals make a genuine contribution to others in the community.
o When a group or organization is receptive to including one person with
disabilities, don'tflood them with all the others. Think through individual
approaches for each person.
Ongoing support. . .
o Know that problems will arise. Trust people to solve them.
o Be creative, providing the necessary help as unobtrusively as possible.
o If someone maybe difficult to understand or challenging to continue to like,
be in communication to provide any understanding possible.
o Support membera of the community byhelpingthem learn what they need to
know to be comfortable with the individual.
63
Agency
Support
Power undirected by high purpose spells calamity; and high purpose by itself is utterly
useless if the power to put it into effect is lacking.
-Theodore Roosevelt
Here is Edward Bear, coming downstairs now, bump, bump, bump, on the back of his head, behind Christopher Robin. It is, as far as he knows, the only way of coming downstairs, but sometimes he feels there really is another way, if only he could stop bumping for a moment and think of it.
-A.A. Milne
Agency Support for Relationship Building
This section is for people involved in all kinds of agencies that serve people with
disabilities: direct care staff, administrators, board members, advocates, case
managers, etc. It is for people who want to develop or increase support for
relationship-building as a service priority. While it is possible for one person to "go
it alone," it is much easier if agencies are committed to helping individuals get
better connected and are willing to commit certain service structures to assisting
those connections.
The six agencies that participated in the 1989-90 Friends Project did so as a
reflection of these commitments. Because of their generosity, we learned a good
deal about what that kind of commitment means in the day-today operations of an
agency. We also learned about some of the roadblocks agencies face. It often seems
that the barriers "the system" puts up are bigger than any of those in "the
community."
An agency's responsibilities to a "client" are dictated to a great extent by
regulations, governmental units such as counties or regions, case managers, and
sometimes parents. These powerful entities may not always support efforts to help
people develop and maintain relationships and friendships. Or they may support
the concept in general but oflen have built-in roadblocks to specific efforts. Some
barriers are unintentional or unconscious, with little awareness of how real
friendships are affected. For example, we saw how regulations about volunteers
can unconsciously be a barrier to developing friendships.
Agencies are expected to do a great deal for individuals they serve, even if they are
providing only a few hours of help each week. They are expected to provide services
within the constraints of volumes of regulations, financial limitations and reporting
requirements. It often seems that there is too much to do and too little in the way
of money and staff with which to do itogencies and the people who work in them
are, understandably, often reluctant to take on "one more thing."
Assisting people in relationships and community belonging may seem just one more
item on an already-overworked staff person's "to-do" list. However, friendships are
too important in real lives of real people to be treated this way. We propose a
different perspective.
Working on What's Most Important In Life
Usually it's not possible to do everything. Perhaps it's most important to work on
what's most important in life.
One way to look at an agency's responsibility for an individual is to look at the list
of needs, goals and objectives on the person's "Individual Service Plan" or
"Individual Program Plan." These plans usually represent a type of contract
between an agency and a county, or other accountable entity. The goals and
objectives represent what the agency promises to do. It is possible that the formal
plan might address what the person needs most in his or her life. However, often
67
the plan represents a list of what is wrong with the individual and needs
"fixing." Frequently the goals represent new skills that are missing and
should be learned. Often goals and objectives for a person have been derived
from a list of specific problems or skill standards, and miss the big picture" of
the person's whole life. Individuals with disabilities themselves report that
friendship and their relationships with others are the areas of highest priority
in their lives.
As we mentioned in the section on "Discovering Interests, Gifts, and
Capacities" (see pages 10-18), the first step in relationship building is
understanding how important relationships are in everyone's life and what it
would mean to the individual with disabilities to have friends. Over and over,
we have seen that when an individual starts to have more relationships with
community citizens and begins to realize that regular people care about him or
her, the things that were "problems" start to disappear.
Having a valued role and being included by "regular people" seem to address
some of the most basic needs of each human being. When those needs are
met, the individual can become "a new person." They no longer have to
demand attention, or be withdrawn. Friendships provide a "gestalt," a whole,
from which to see someon~ bigger perspective than a specific behavioral
objective. When things start to happen in' the big picture, the smaller
objective can be automatically drawn along or can even disappear as an issue.
68
Arthur is 40 years old and lives in his own home with two other men. He loves books
and history, and has a fascination with cemeteries and death. He was described by
the staff as hesitant to try new things. They said, We have to go slow with Arthur."
Arthur also tended to be a "yes-man," willing to comply with whatever staff asked or
expected him to do. Staff had been working on the goal of Arthur being more
"assertive" for quite some time.
Because Arthur loved books and the library, his Friends group had the idea that
volunteering at the library would be a good way to connect Arthur with other people.
One of the people in his group knew the head librarian because their daughters were
in a school activity together and both had the same first name. She offered to ask
him if Arthur could volunteer. She called him in the morning, halfway expecting to
have to mdce a lot of arrangements and do some convincing, but the librarian said,
"Sure, have him come over this afternoon."
The first time that Arthur came home tlom the library he told his staff, "The books
were really dusty. They really needed me."
The library staff had given him a name-tag on his first day. Staff were amazed to
find out that when they had spelled his name wrong, Arthur by himself told them it
was wrong and requested a new one. He proudly wore his library name-tag to the
sheltered workshop and told people, "I have a new job. I work at the library now."
Staff were willing to go with Arthur for as long as necessary, but after just two visits
Arthur told them that they didn't need to come along anymore-he could walk by
himself and handle it himself. One staff said, "But Arthur, what about walking
home? It will be dark out." Arthur firmly told her, "But Sandy, there are street
lights."
Arthur also tried other things for the first time. He agreed to stay for the coffee hour
between church services and went to the adult Bible class. One Sunday, he sat way
up in the front so that he could attend communion. Art said he was "proud of himself
for trying."
Arthur went shopping for a desk for his room and asked staff to help him keep a
journal. He wanted to write about his life because now he "was doing so many
interesting things."
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Staff as Community Connectors, Not Just Skill-Trainers
In the introduction to this manual, we spoke of a "different role" for staff (see
page 2). Training skills, fixing problems, or preparing people for more
independence andlor more integration are all important. ii~wever, we propose
a different role. Given that relationships and being cared about are some of
the most important needs all people have, staff can play a bigger role in that
arena. Staff can develop roles as community connectors.
That role will often require some agency commitments and structures to
support it. Certain of those structures are discussed in this section. The first
priority, however, is for the agency itself to be clear on its commitment in this
area.
Enlisting the Powers that Be
Helping the person make and keep relationships is a legitimate and crucial
responsibility of a service agency. Sometimes, the "powers that be" need to be
convinced.
If the support of case managers, agency decision-makers, a parent, or anyone,
needs to be enlisted, one way to do that is to involve them in the process of
getting to know an individual described in the section "Discovering A Person's
Interests, Gifts, and Capacities" (pp.10-18). This process can often open
people's minds about what is really important for the individual they "get to
know," even if they think they already know all about them! Taking a careful
look at what's missing in an individual's life in terms of relationships and
friendships often forces us to realize that a lot of "what's wrong" is there
because the individual has no friends, no people who care and like them just
for themselves. This realization can help foster the kind of support the agency
may need to use its resources to serve the individual in a different way.
Another way to enlist support is to share success stories. The examples in this
manual and some of the other resources listed at the end of this manual can
provide such stories. However, the most convincing evidence is found in
stories about people already known to the agency. Even small successes can
provide support for increasing efforts at relationship building.
Other strategies can include:
o sharing written articles for the convincing process
o attendance at specific sessions at state or national conferences
o recommendations for in-service training
o enlisting the support of powerful allies who share this commitment
(parents, case managers, board members, community members, etc.)
and other means to communicate the real importance of friendship and
community.
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One agency serves many people who live fairly independently and receive only a
few hours of support a week. Mostofthe staff time is used to check on people,
check that their apartments are clean, beds are made, and checkbooks are
balanced. The agency realized thatone of the things they can do is to advocate
with the county for a different use of staff time to decrease the amount of time
spent on cleanliness and increase the amount of time spent on mnnecting and
supporting relationships.
Not Doing "More," But Doing Differently
Because almost every agency faces the challenges of a tight budget, SM shortages
and time constraints, it is not reasonable to assume that an agency can really do
"more." One of the things we learned f+om the agencies participating in Friends
was that sometimes it is possible to do what looks like "more" with the same
resources. It is often possible for an agency to rearrange the use of the resources it
does have. The primary avenue for this rearrangement is to examine the way staff
time is spent now, and then to discover or design ways to have staff spend their
time differently-assisting individuals to meet and get to know others, and to go
places where the likelihood of connecting is maximized.
These efforts do take time. Sometimes there needs to be a conscious agency
commitment to allocating the time directly for this priority. Some examples of the
ways the Friends agencies found to do this include:
o Find ways to create opportunities to meet people within the context of what is
already being done. Instead of taking someone to a segregated swimming
class at the "Y" take the individual to the community pool during adult swim
time.
o Instead of using staff time twice a week to take several individuals out into
the community, take just one individual at a time. Even though each
individual might then have less time in community settings, each opportunity
can be tailored to the person's own interests, and is likely to provide better
opportunities for meeting other people. (Of course, planning is usually
required to make this possible and staff time with the individuals remaining
behind needs to be phumed.)
" Re-examine priorities. It might be possible to use more of the staff person's
time to get people to places where they have a chance to be with non-disabled
community members (an adult education class, a Jaycees meeting), rather
than solely teaching independent living skills in service settings.
o Examine the activities the person with disabilities does do, and design ways
those activities can be altered to meet more people. For example, if someone
likes to sit in the park, how could he or she volunteer for the park system so
that the person could meet more people?
71
Michelle has two friends who come to visit her at her group home every Friday
afternoon after school. Atthough the school is near the group home, both
girls' homes are about ten miles away from the town. Staff time is usedtotake
them home after the three girls visit. Michelle goes along for the ride in the
car, and to continue to visit with her friends on the drive.
Extending Agency Structures to Support Friendships
Once an agency is convinced about the importance of relationship building, it
might have to revise some of its roles and structures. One possible different
role for an agency is as an advocate for individuals' rights to opportunities to
spend time with non-disabled people in regular community settings (Rules 34
and 42 in Minnesota). Agencies can advocate with counties ~d case
managers to make relationship building a priority for the individuals they
serve. Case managers can advocate with agencies and families.
Some agencies are experimenting with sti schedules and roles, trying to
increase flexibility to accommodate support for participation in community
activities that take place outside of regular staff hours. Staff orientation
training can include more about friendships with community citizens.
Activities that are now centered on "community integration" can transform
into "community connecting." The following list of examples is from the
agencies that participated in the project:
o Changing orientation training: "community integration" now means
helping people have fiends instead of doing community activities
o Program policies include specific "how-to's" to help people have friends
o Streamlining reporting and paperwork requirements to free up staff
time for relationship building
o Using staff from smaller homes to work with some of the people in the
larger homes when they have some free time
o Flexibility in staff scheduling: someone can take an individual out even
if it was not originally scheduled
o Encouraging staff to take individuals to their own community activities
o Using well-connected board members as a resource by asking them "who
do you know that might like to meet so-and-so?"
o Using the staff who have been involved in the Friends project as
resources for other staff to assist other individuals served
o Forming a support group with other people (such as case managers, day
programs, school, recreational programs, and community people) to work
on efforts together
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Staff Development and Community-Building Skills
Helping individuals with disabilities get better connected in their communities
would be much easier if the staff people who worked with them were themselves
connected in their communities. Unfortunately, it is not always possible to hire
staff who already have strong community ties. It is possible, however, h train stti
about the importance of community connections and relationships, and to
encourage them to use their existing connections as well as to develop personal
connections in the community.
o Have staff do their own relationships maps. This can help staff persons see
opportunities within their own networks of relationships for connecting
people with disabilities. If staff people within an agency begin thinking about
their own connections and brainstorming ideas for connecting various
individuals served by the agency, they might find that a wide variety of
opportunities is already available.
" Identify staff people who are natural "connectors." Some staff people are
more comfortable in roles as "community connectors" than others. These
people are generally the outgoing, sociable types. Some are already active in
their neighborhoods and community organizations, and know iota of people
through their activities. Some may be new to the community, or unfamiliar
with particular activities or opportunities, but have no hesitation calling up,
asking questions, finding out information, and meeting new people. These
staff people can act as resources to other staff, can take the lead and help
other staff leam about community-building, and can inspire others to try.
When one staff person discovers that "It never hurts to ask," and helps
someone make a connection, others see that it can be done.
o Encourage staff to get involved in the community themselves, and recognize
this involvement. One way to encourage involvements to make information
about various community organizations available to stiusing a bulletin
board, newsletter, or information presented at staff meetings. Acknowledging
staff who participate in community organizations is one way to let them know
that their participation is valued and to encourage others to get involved.
Often, when one staff person joins or becomes involved, others follow.
o Encourage people leamingto be more self-generative, curious, out-going, and
to take more risks. With continuing encouragement, several staff duringthe
course of the project became more willing to ask more people to become
involved and to investigate more possibilities. The staff themselves became
more a part of their own communities just by helping others to do so.
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The Role of Volunteers
Some agencies have used volunteers as a way of involving people with
disabilities with non-disabled community members. Volunteers can play
valuable roles in human service agencies. However, if formal volunteers are
substituted for more natural relationships, dependence on volunteers as a way
to provide relationships can sometimes create problems.
Recruiting volunteers is one way to create opportunities for the development
of lasting friendships between non-disabled people and individuals with
disabilities. However, the "formal" status of a volunteer can sometimes get in
the way of genuine friendship. The images of dependency sometimes
unconsciously associated with volunteering can also get in the way. The
volunteer may feel an obligation rather than just liking and wanting to be
with the person. When volunteers are "paid" by being awarded hours of
volunteer credit, are given credit for school, or are acknowledged for their
"good deeds," the "helper-helpee" nature of the relationship is emphasized.
Neither the volunteer nor the individual may feel like he or she is really a
friend. Also, if the formal volunteering agreement ends, there is usually little
continuing contact.
Agencies can address this problem by examining their practices that are
designed to promote friendship and their existing volunteer recruitment
practices. Agencies can also work to clarify volunteer roles, and eliminate or
at least minimize formal roles for individuals who are simply friends.
April and her friend Angela had had a great day together, shopping for
magazinesandbooks, checking out clothes, and having lunch. Angela really
enjoyed being with April. At the end of the day, she was letting April out of
the car. Just before she got out, April turnedto Angela and said in her usual
bud, commanding votie, "WILL YOU BE MY VOLUNTEER?" Angela was a
little stunned, but she sakl, "Well, what's a volunteer?" April said, "YOU know,
somebody who takes you out once a week and does stuff with you. " Angela
replied, "Well, I won't be your volunteer, but I will be your friend. "
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What About Liability? (The Risk of Being Related)
Agencies have a responsibility to protect and safeguard the well-being of the
individuals in their care. On the other hand, individuals with disabilities have the
right to as much independence, choice, and self-expression as possible, as well as
the right to interact with non-disabled people in community settings (as required by
Rules 34 and 42 in Minnesota). (often, the balance between agency responsibility
and individual rights is diflicult to maintain, and requires creative problem-solving.
For all of us, getting to know others involves some risk. Whether the relationship is
casual or intimate, there is a possibility of being rejected, conned, misunderstood,
taken advantage of, or not liked. People with disabilities face the same risks, and
sometimes additional ones as well.
A providing agency must balance the risks of community life with the safeguards
needed. A tightrope must be walked, with balance between what's overprotective
and what's foolhardy, what's encouraging of community relationships and what's
too "professional,"" suppressive," and, yes, even what's tuo "safe." No matter how
many guarantees an agency tries to put in place to minimize liability, things
happen. Even in the most apparently safe and protected environments, things
happen. Each individual has the right to the dignity of risk of meeting people,
going places, and becoming involved with others. An agency has the responsibility
to reasonably support and safeguard the individual, but not thwart the joys and
let downs of full participation.
Concerns about agency liability have dampened some agencies' enthusiasm for
involving people other than paid, trained stdTin the lives of individuals with
disabilities. These concerns have also caused some agencies to spend their time
training and certifying as volunteers people who would otherwise be considered just
friends. .
A Friend is Not a Volunteer
Minnesota regulations define a volunteer as someone who "under the direction of
the license holder, provides services without pay to persons or to the residential
program" (Rule 34), and "an individual who, under the direction of the license
holder, provides direct services without pay to persons served by the license holder"
(Rule 42). The regulations do not define a"friend." But clearly, aftiend is not a
volunteer. A friend is someone who wants to be with someone they like, just
because they want to be with them, not to `provide services." Volunteers provide
services. Friends provide friendship. Agencies must be clear that what individuals
do with "just friends" is different than what they do with volunteers. The agency
must also be clear about their responsibilities for developing and supporting
relationships for each individual.
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Consider the Issues Based on the Individual
For individuals who are fairly independent and spend time in the community
without agency supervision, it maybe fairly clear how to best support the
individual's social relationships. For some of these individuals, staff may need
to thoroughly address the potential risks of abuse (financial, sexual, etc.).
Staff may also need to carefully consider how to best provide sufficient support
for the person while encouraging relationships. For individuals who need
more assistance, especially those for whom the agency has 24-hour
responsibility, staff may need to think through different issues related to
building relationships and address these issues in the formal planning for the
individual. This planning could include: discussion of the best ways to
support relationships, what information a community person needs to know,
whether staff need to accompany the person and for how long, and how to
ongoingly support the development of real friendship.
Friends Can't Be Programmed
Minnesota's Rule 34 requires agencies to "increase each person's opportunities
to interact with non-disabled individuals who are not paid caregivers in
settings used by non-disabled individuals." Rule 42 requires service providers
to "increase each person's opportunities to interact with non-disabled
individuals who are not paid caregivers." These and other regulatory
requirements sometimes result in formalizing attempts and turning friendship
efforts into programs. Agency commitments to the quality of people's lives
beyond what the rules require may result in friendship goals and objectives in
habilitation and program plans.
It is good to have specific plans known and agreed-upon, especially regarding
efforts to have people meet each other. However, there is a danger of having
efforts become too boxed-in and narrow-minded. Our intent is not to have
friendship goals become just one more persistently unmet skill objective, such
as "Charles will achieve 90% accuracy in toothbrushing sequence." It makes
little sense to write a goal such as Mary Jane will have one friend by
December, 1991." Neither Mary Jane nor the friend are that predictable.
Rather, if goals are set (and they don't have to be!), they should be aimed at
staff actions for connecting and providing the support necessary for existing
relationships. Examples of goals that may make sense include:
o If Gordie chooses, he will enroll in a community education class this fall.
Staff will go along at least the first two times to introduce him to the
teacher, other students, and see what else he needs.
o The program manager will investigate community opportunities based
on Helen's interests in rock and roll, crocheting, nature, and dancing,
and will identifi at least two concrete opportunities to explore.
o Staff will support Marjorie in understanding the appropriate number of
phone calls to make to her friend Jill.
o Staff will provide transportation so that Ed can get together with his
friend Tom at least once a month.
76
In planning for each individual, staff, case managers, family members, and others
involved need to figure out how best to help the individual meet and spend time
with nondisabled community people, and how to make sure that both the
individual's and community person's needs for comfort and assistance will be
safeguarded in those interactions. It's important that connecting and supporting
friendships be enjoyable for everyone involved. But no matter how well-intentioned
or planned staff efforts are, the "magic" of two people connecting must be given
room. Sometimes the best thing for staff or an agency to do is to get ouf of the
way-to let people be, so they can figure out their own appreciation of each other,
and be themselves.
Almost always, the best staff to work on relationships with others are those who
care deeply about the person, are committed to their relationships with others, and
can unabashedly become or them in representing them to the community. Connecting
requires providing the best chances for success, and a commitment to working out
the problems that do arise.
Decrease, Don't Increase, Distance
Much of what agencies have to do in the course of day-to-day operations results in
creating distance between individuals with disabilities and nondisabled
community people. Whether the distance is a result of traditional service practices
or of government regulation, it is a barrier to relationships between the individuals
we serve and others in the community. If we are to be successful in our efforts to
help individuals with disabilities become more a part of their communities, we have
to find ways to minimize the distancing effects of our operating practices.
The practices to examine are those which make people look "special" or "different"
or as "needing special help," rather than just like people. Although people with
disabilities often do require special assistance, that assistance can be provided in
non-obtrusive ways that are as much like the ways other people do thinga as
possible.
Examples of service practices that can create distance are:
o how people are referred to
o where they live
o how they are introduced
o in what vehicles they ride
" how they are spoken to
o what kind of work they do
o how they are included
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The key factor is how people are supported in seeming like people we ourselves
would like to get to know and be friends with. The agency responsibility is to
promote those practices, and re-examine practices that do not bring people
together.
Suggestions for Agency Practices
Based on our experiences with Friends, here are some suggestions for agencies
to promote community relationships and friendships:
o examine the major priorities of life and redirect energy and resources
to those priorities
o focus on capacities and gifls rather than correcting deficits
be willing to experiment and maybe take some risks
o start large conversations with all the "powers that be" for the
importance of ftiends and relationships
o prioritize the staff role of supporting friends and full community
belonging-in job descriptions, sti training, stafl'evaluation
o redefine staff roles, incorporating the ideas of: community connector,
social guide, escort, chaperone
o examine creative uses for staff time
o promote normal friendships rather than formal volunteer roles
o encourage staff creativity regarding their own connections,
memberships, ideas, people they know
o trust the natural capacity of the community, and provide stilcient
o support for that capacity
o recognize that small changes can make a big difference
o recognize that overall change takes a long time
Things to watch out for:
o thinking that all this will cost more money or require more staff (our
agencies found that this was not so)
o requiring community people to be volunteers rather than "just friends"
turning friends into volunteers (special awards, formal training
programs, etc.)
o using "liability" as a justification for not supporting individuals in
having as integrated and independent a life as possible
o using "risk-takin# or "trusting the community as a justification for
carelessness or thoughtlessness
o trying to "over-program" and "norrnalize" friendship
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List of Resources
Beeman, Pat, Ducharme, George, & Mount, Beth. (1989) One candlepower:
Building bridges into community life with people with disabilities. Available from
Communitas, Inc., P.O. Box 74, Manchester, CT 06040, for a fee.
Center for Urban Affairs and Policy Research. (1988) Getting connected: How to
find out about groups and organizations in your neighborhood. Evanston, IL:
Northwestern University.
Mount, Beth, Beeman, Pat, & Ducharme, George. (1988) What are we learning
about bridge-building? A summary of a dialogue between people seeking to build
community for people with disabilities. Available from Communitas, Inc., P.O. BOX
74, Manchester, CT 06040, for a fee.
Mount, Beth, Beeman, Pat, & Ducharme, George. (1988) What are we learning
about circles of support? A collection of tools, ideas and reflections on building and
facilitating circles of support available from Communitas, Inc., P.O. Box 74,
Manchester, CT 06040, for a fee.
Mount, Beth & Zwernik, Kay. (1988) It's never too early, it's never too late.
Available from Minnesota Governor's Planning Council, St. Paul, Minnesota.
Newton, J.S. (1989) Social support manual. Eugene, OR: Neighborhood Living
Project, Specialized Training Program.
O'Brien, John and O'Brien, Connie. (1989) Framework for accomplishment.
Atlanta, GA: Responsive Systems Associates.
O'Connell, M. (1988). The Gift of hospitality: Opening the doors of community life
to people with disabilities. Evanston, IL: Center for Urban Affairs and Policy
Research, Northwestern University.
Ordinary Life Working Group. (1988) Ties and connections. London: King's Fund
