As more individuals with developmental disabilities are living in ordinary homes in ordinary neighborhoods, agencies have the opportunity to move supports to the next levels of community integration- from physical integration to social integration, from community activities to real community membership, from community places to community friendships. Both state and federal legislation often require community integration and promotion of natural supports. Quality assurance outcomes often emphasize friendships, community participation, and social roles. While these requirements and supports are often in place, there is still a great distance to go for the reality to shift from people's lives belonging to "the system" to "the community."
Lessons From Community Members About Bridge-Building
by Angela Novak Amado, PH.D.
There are many lessons that have been learned in the last few years from human services agencies across the country that have worked to support friendships between people with developmental disabilities and ordinary community members. The best "community education" or "community awareness" that happens is when one community member befriends one person with disabilities. For more of that to happen, staff need a great deal of training, and agency policies need to shift.
Some of the most powerful lessons in building community connections have been learned directly from community members, and address specific concerns which agency staff sometimes raise. Three of those lessons are described here.
LESSON #1: "I had to be asked."
From time to time a professional or other staff of a human service agency will say something like, "friendships should happen naturally... you can't force people ... if people aren't interested, you can't make them..." While it is preferable to have things occur naturally between people, often they don't. When community members see an individual with disabilities with a staff person, they won't necessarily approach families. Sometimes they think the person is adequately cared for and they don't know that they themselves could have any kind of role in the person's life. Sometimes they have no idea of the isolation and separation of individuals with disabilities. Even community members themselves have expressed that they need to be asked, invited, and directly spoken to, if any interaction or connection is going to occur. Two examples of this follow.
At a meeting of community members in Fairmont, Minnesota, a forum for community members to discuss full community inclusion, an auto dealer began to describe his friendship with a blind musician. The two men were both members of an organization called Ducks Unlimited, an association for duck-hunters who also work to preserve wetlands and marshlands. The blind musician had come to the auto dealer and asked him to go fishing. The auto dealer had accepted, the two men had gone fishing together several times, and the auto dealer reported they were now friends. However, he also expressed, "I (the auto dealer) would never have gone to him (the musician) and asked him to go fishing. But just because I wouldn't have gone to him to ask him doesn't mean I'm not friendly or willing - it's just that HE had to come to ME to ask ME." At the forum we distinguished the necessity of community members having to be asked, including asking for people who cannot ask for themselves.
Another instance is a minister in Nebraska who had been approached by a local group home interested in finding church members who might be willing to be friends, on an individual basis, with people who lived in the group home. The minister had found several church members who were interested and several friendships had been established. This minister expressed," I would bet a month's preacher's salary (not that that's that much money) that every congregation in the country, whether it's Catholic, Protestant, Jewish, or Muslim, has at least one person who has a passion for people with disabilities. And I would also bet a month's preacher's salary that 90% of them don't know that they have that passion, because they haven't been asked and haven't had the opportunity to find out."
LESSON #2: "I'm getting more out of it than he is."
In some cases, some individuals with disabilities do not seem that interested in getting to know other people. For instance, some individuals with the most severe disabilities, who may be part of the last groups of people leaving public institutions, sometimes have no spoken language and it is unclear how much they understand of what is going on around them. Other types of individuals may be very expressive, but seem to be selfish or enclosed in their own world. Sometimes staff will indicate very little belief that it is worthwhile to work on friendships for such individuals. One of the key factors in whether efforts in community bridge-building are successful is whether the bridge-builder believes that the individual with disabilities is worth knowing and worth befriending, that they have something to offer others.
Most people who work in the field of developmental disabilities do so because of genuine benefits they receive from knowing individuals who have disabilities. When asked what they get from knowing people with disabilities, staff will generally say things on the order of:" unconditional love," "acceptance," "joy...humor...they make me laugh," "pride when they accomplish something," " a sense that I make a difference," "appreciation for what I have," "reminders about what's really important in life." Staff will be more successful if they believe that community members will also benefit from receiving these gifts that people with disabilities have to offer.
Community members who have befriended people often say something like, "I'm probably getting more out of this friendship than she is." It is striking how often people say that, spontaneously and un-solicited. One barber in Minnesota who had befriended a quadriplegic man who had no spoken language, said, "I'm not sure what he's getting out of it. He doesn't talk. But what I know is, this is important to ME. I'm probably getting more out of it than he is." It would require a different focus for human service agencies to know that part of their role is to support community members in receiving the benefits of befriending an individual with disabilities, whether anyone understands what the person with disabilities is getting out of it or not. Is it important and worthwhile to have as an agency's job to provide the opportunities for people like this barber to befriend people? Agencies that are more successful in community bridge-building have re-organized themselves to honor that role as their mission.
LESSON #3: "Can I be John's friend? Yes, I can do that."
Sometimes community members have reactions to how an individual with disabilities looks or behaves. Staff sometimes forget that when they first started in the field, they often had reactions, too. Sometimes community members will defer the opportunity to get to know an individual with disabilities on a more intimate basis, saying they're too busy.
Again, there are lessons to be learned from the community members who have gotten past their initial reactions and who have made the time to get to know people with disabilities better. There are community members who have come to understand the importance of their role; to understand the separation and isolation of individuals with disabilities; and to be clear that no matter how hard an agency may try, it is still an agency and not community. There are ordinary community members who can come to see that a particular individual may need a very special friend, and they are willing to be that friend. They are willing to get past the other person's initial apparently rejecting manners, or uncomfortableness with strangers. They are willing to rise to the challenge, to come to understand even people who are very difficult to understand.
A fireman who befriended a young man who had a passion for fire engines described his being approached by the staff member. Even though the fireman worked 60 hour shifts, had a business on the side with 30 employees, and had five children, when the staff asked him if he could be friends with John, he said he would look to see, and said yes he could. Agency and staff success depend on believing that there are community members who are willing. Trusting that people are willing results in different ways of asking and often different responses than thinking that people won't be willing.
The more agencies engage in community-building efforts, the more they learn about what works for them and what works for community members. It is a long-term process that requires commitment, experience and mastery development. The learning curve has to include learning from community members, who are the experts in and best teachers about community. Perhaps the major job for human service agencies is to assist communities in seeing that they are the major player in building inclusive communities, and only when they assume that role will we have fully inclusive communities.
|Angela Novak Amado, Ph.D. is the Executive Director of the Human Services Research and Development Center and a project coordinator at the Institute on Community Integration, University of Minnesota. She has worked in efforts to promote friendship between people with and without disabilities for twelve years, in various states, and has presented about community bridge-building across the U.S. and in Canada, Israel, and the Netherlands. She is the editor of Friendships and Community Connections Between People with and without Developmental Disabilities. |