Building Skills in Self Direction with David Isitt
A resource to support service providers in building skills and knowledge in the area of self direction. In this video, we see service providers working on the ground with people and management staff giving their reflections on a self directed model of service. More formal concepts and philosophies are provided to assist in understanding how services can move to a model of self direction.
Defining Culture
“Culture is the learned and shared way that communities do particular things.”
Often when you think about community, the notion of culture is introduced. The term “culture” is dependent on community, as culture relates more to the behaviours manifested by the community. People bound together around a common cause create a community, and the minute they begin to establish behaviours around their common cause, they develop a culture. Culture is the learned and shared way that communities do particular things.
This basic approach to community and culture blends three features. One is the fact that community is a network of people and, often, these people may have great differences or even distances (diversity) between them. They can be different in age, background, ethnicity, religion, or many other ways, but in spite of their differences, their commonality or common cause pulls them together. The similarity of the common cause or celebration (commonality) is the second key feature of community and the glue that creates the network. Regardless of who the members of the network are as people, their common cause overrides whatever differences they may have and creates a powerful connection.
Finally, as the collection of people continues to meet and celebrate on a regular basis (regularly) they begin to frame behaviors and patterns and become a culture, the third key ingredient. These regular meetings bond the community members as they discover other ways that they are similar.
Defining Community
“Community is defined as a network of people who regularly come together for some common cause or celebration ”
Community is defined as “a network of people who regularly come together for some common cause or celebration (Condeluci, 2002).” A community is not necessarily geographic, although geography can define certain communities. To come to an understanding of community is to appreciate that community is based on the relationships that form, not on the space utilized. In fact, space can be an abstract notion when it comes to understanding community. Think about the global community created by the Internet. These communities are not bound by geography, but rather are relationships formed in cyberspace.
The term “community” is the blending of the prefix “com,” which means “with,” and the root word “unity,” which means togetherness and connectedness. The notion of being ‘with unity” is a good way to think about the concept of community. When people come together for the sake of a unified position of theme, you have community.
Think now about communities in your life. All of us have a number of groups that meet the definition of community. Our families, for example, are a good framework for understanding community. These are people with whom we spend a great deal of time on common themes.
To help us just a bit more in understanding community, consider another definition of community from Robert Bellah (1985): “A community is a group of people who are socially interdependent, who participate together in discussion and production, and who share certain practices that both define the community and are nurtured by it.” Both of these definitions give us a solid start in thinking about communities in our lives.
Using the definitions of community, spend some time now identifying these groups in your life.
Newsletter Winter 2014
The Interdependence Network (IN) is a collaborative, membership based advocacy group created by disability-based human service organizations from around the United States, Canada and Australia. Our purpose is to promote the full inclusion of people with disabilities in the community. We do this by:
- Fostering the development of new approaches to human-service programs that focus on facilitating community engagement and the building of social capital for people with disabilities as a primary outcome.
- Providing professional development opportunities to human service agencies focused on helping them implement an organizational culture that values and supports meaningful community inclusion.
- Developing a program evaluation protocol to track social capital related outcomes.
- Disseminating information, research findings, and resources to the greater rehabilitation community, including people with disabilities and their families.
- Educating the business and nonhuman-service related community on how to be welcoming of people with disabilities.
The Interdependence Network’s founding organizations include:
- Community Living and Support Services, Pittsburgh, Pennsylvania
- Community Living Mississauga, Ontario, Canada
- communityworks, inc, Overland Park, Kansas
- Connect Communities, Vancouver, British Columbia, Canada
- Hope Services, San Jose, California
- John F. Murphy Homes, Auburn, Maine
- Mamre Association, Brisbane, Australia
Our tips and strategies have been developed for those adults and children with disabilities who want to be more engaged in the community. A number of our tools are available for free download on the buildingsocialcapital.org website (http://buildingsocialcapital.org/toolbox/). Including:
1. Community Engagement Planning Tool
This tool is designed for parents, self-advocates and direct support staff. It is used to create a community engagement plan for a person with disabilities.
2. Tips on Getting Involved in the Community
This fact sheet provides an overview of the important steps involved in helping a person or child get involved in community-based activities. It reviews the 4-step process of community engagement.
3. Evaluating Community Venues
Supporting people to connect with others in the community begins with finding the right venue. This tip sheet offers suggestions on how to find places in the community that offer the best opportunities to build social capital.
4. Community Membership Scale
This tool helps staff and families evaluate current community engagement and offers steps toward increasing inclusivity.
These tools have been developed and used at our member agencies. All of the strategies promote our commonality, not our differences. They are grounded in the values of person centered planning and individual choice in decision making. Our approach does not concentrate on trying to fix or change the person with the disability. Instead, the focus is on helping individuals gain independence by developing and maintaining meaningful social relationships and social capital, based on the person’s interests and passions. Indeed, relationship-building is a central tenant of this approach and is just as important for well-being as traditional rehabilitation. Do you still have questions about why social capital is so important? Click here to read more about social capital and why it is a key ingredient in meaningful community inclusion: http://buildingsocialcapital.org/about-social-capital/.
In addition to the above, our buildingsocialcapital.org website also has a variety of additional free resources to help you and your organization, including:
- Videos featuring, IN founder and lead organizer Al Condeluci discussing the importance of social capital.
- White Papers on community inclusion and civic engagement from leaders in the rehabilitation community.
- The View from the Field Blog, a forum for discussion and dialogue on strategies to help people with disabilities get more engaged in the community and to begin building more social capital.
- A Speaker’s Bureau with information on speakers who can provide professional development training for your organization’s staff, management, and Board of Directors.
The IN has been hosting a series of regional symposiums on social capital and civic engagement. Following Ancient Greek tradition, the IN symposiums are unlike other conferences. They gather like-minded people who come to debate, plot, boast, and discuss the actions and directions we can take to help people with disabilities enhance their engagement in the community and to build social capital. Participants walk away from the symposium with a personal blueprint for action in their community. In 2014 we held symposiums in:
- Toronto, Ontario
- Kansas City, Kansas
- San Jose, California
- Brisbane, Australia
In 2015 and 2016, symposiums are being planned for:
- Vancouver, British Columbia
- Portland, Maine
- Ft. Lauderdale, Florida
- Pittsburgh, Pennsylvania
- Shippensburg, Pennsylvania
Please check our website for upcoming dates and locations in your area (http://buildingsocialcapital.org/symposiums/).
Are you interested in community inclusion and want to get involved in our effort? We are building a catalogue of tools and resources developed by and for human service agencies that support a person-centered, function-based approach to community engagement. Please contact us today, at info@buildingsocialcapital.org if you are interested in sharing your community inclusion strategies and success stories with us.
DOING IT THE NATURAL WAY
““People who live in isolation are more likely to die than someone who was well connected to lots of people and smoked heavily.” Darcy Elks, Melbourne 2010.”
Isolation is one of the most profound problems of our lives and more often than not it falls beneath general society’s radar. We meet roughly 200 people before we click with 1, so as person who is socially disadvantaged that number of people you may need to meet could double. Makes you think how hard we all must try to help people in our lives to have proper relationships that then could lead to friendship.
We probably take making friends for granted and forget why they are so important, think about how many great relationships you have and then imagine life without ever meeting that person! Pretty tough i imagine, it certainly was for me.
Having a variety of good relationships is all part of “living a good life” and opens up all sorts of opportunities. Getting a job, for instance is a lot easier, as the old adage goes, ITS NOT WHAT YOU KNOW BUT WHO YOU KNOW.
Relationships can help people with emotional and physical safety and nurture self esteem, and as we know “people keep people safe”.
We all understand that relationships and friendships are very important to us all regardless of our abilities but what help could we be to someone who finds making new friends more difficult.
We have to understand that some approaches don’t always work, if a person has an intellectual disability does that mean that they will be friends with everyone in the day facility they find themselves in, of course not. I’m a Pom and i don’t like all Poms.
We need to bring people together naturally, find people with the same interests, beliefs and concerns. All people have gifts to offer and if you can meet people in a typical way, if then a relationship forms then it is better for all involved.
Recruitment of volunteers to be friends is not a positive approach to long term friendship or offering reward for being a “friend”. We need to identify a natural pathway and assist people to walk along it, taking the ups and downs as they come. Protecting someone who is vulnerable all the time won’t help in the long term, as we know life is sometimes hard and not ever seeing that wouldn’t make the good times seem so much better. All relationships are risky as many people know, the divorce rate speaks for itself but if you have lots of them then the ones that fall by the way side are replaced by stronger ones, we hope.
In identifying natural pathways, i feel that “One person-One place has the most promise. Being in a group as an individual may be a better avenue for nurturing natural and meaningful relationships. It will give the person more ability to shine and show off their strengths and talents. It is also an opportunity to meet others with similar interests and contribute within a valued social role.
A valued role creates a positive image and conveys to all that you have a place in society and others will see you in a positive way which can only be a good thing when trying to engage in new friendships. Having a negative role or perception only furthers other people’s beliefs, rightly or wrongly that a person who needs a little more effort to start a relationship might just fall into the too hard basket.
Encouraging people to seek out like minded others is a great way to start on building a natural relationship, but remember we are not there to invent new passions, just help the person build on what has been there all the time. Finding new interests is an added bonus on the journey and finding new people to help walk down the path is very important as long as they arrive there naturally.
Francis Bacon once wrote” THE WORST SOLITUDE IS TO BE DESTITUTE OF SINCERE FRIENDSHIP”
Ian Hulse. Mamre Association, Inc. Brisbane, Australia
We must protect them from…[fill in the blank].
The following post was written by Jim Karpe a father, coach and advocate for people with disabilities in the New York City Area.
We must protect them from…[fill in the blank]. For example, failure. “We must protect these special needs children from failure—it will harm their self esteem.” Sound familiar? Coach Gary and I brought one of our NYC Special Needs soccer teams out to California for the National Games, to play against other special needs teams. And we got some surprises. We had expected to mow down the competition. Instead, we turned out to be the grass, not the lawn-mower.
First, a confession of dis-loyalty: I also coach Baseball. And I drill into my teams and parents "Baseball is about failure and redemption. You are going to strike out, and then later you are going to get another chance."
Turns out to be true of soccer as well. On July 3rd, we played tough games against competitors who out-weighed us and out-skilled us. In one game, our teen-agers were completely out-matched by a crew of young men in their twenties and thirties. Yes, they were special needs, but they also had, on average, a physical advantage of six inches and 70 pounds. And the carnage continued on July 4th. The Alhambra Phoenixes out-ran and out-scored us, even though we got an assist from the star mid-fielder of Montebello "Sharline the Machine". We made her an honorary NY Skyline team-mate-- she's the one in the red socks. She has excellent ball-handling skills, and got the ball down-field for us. But despite that, we still could not manage to finish it off, and once again were out-scored. Those are some of the triumphant Phoenixes off to the left.
We lost again. But played better than ever, with more coordinated team-work than ever-- more passing, more running down the field to help out a team-mate.
In our final game of the tournament, against Grenada Hills, it all came together. Everyone was involved, and everyone brought their "A" game. Gabby (#4) put on the after-burners. In the second half she put up three goals. Sean(#2) put up a couple of goals, despite persistent (un-called) holding fouls from Grenada #10.
AJ (#11) and Eli (#7 playing now in white NY t-shirt) ran and created passing opportunities which led directly to scores by Gabby and Sean.
Amanda (orange goalie shirt) did her usual excellent job as goalie, but with additional skills-- keeping her feet together to prevent the nutmeg-- and with more defensive assistance from Sandy and Angelica. The old Angelica (#8) came back to us, upping her pace from "saunter" to "merciless charge". Sandy (#3) intercepted the attackers on several vital occasions: Assessing the situation, timing her move and turning the ball back over to NY Skyline. It was a great game. Against a roughly equal opponent. Final score, seven to seven. But only roughly equal because our kids were putting in extra effort after facing-off against fierce competitors over the prior three games.
Failure plus effort leads to redemption. A familiar formula in sports, but often considered out-of-reach for special-needs players. All of us-- parents, coaches, buddies, on-lookers-- often feel that we need to protect them from the sharp jagged edges of reality, of failure. For example, the convention in VIP soccer is to not keep score. Unfortunately, in our zeal to protect, we cut off the opportunity to go through the rest of the arc. Failure comes first, motivating extra effort. And then redemption.
It was not the National Games we expected to have. Nothing close to what we planned. And it worked out great.
WHAT NEXT?
What does this mean for our soccer program? It is not that we will start arranging for all of our players to experience failure on regularly scheduled basis. As with so much of life, there is a balance to be struck. One size does not fit all, especially in the world of special needs. But for the parents and coaches of West Side Soccer League VIP, the experience in California has re-calibrated our thinking about the balance between protection and exposure.
So what will happen is a little more failure, a bit more exposure to the jagged edges. And consequently a lot more opportunity to experience the self-motivated change which leads to greater achievement. On the field, and off.
"He just likes to be alone...”
We’ve all heard it on our journey to promote social capital. “He just likes to be alone.” “She pushes all her friends away.” Promoting social capital is challenging and sometimes we get stumped. Often, it’s those who have Autism or are dually diagnosed with a mental illness. One diagnosis we have found particularly challenging is Borderline Personality disorder. Relational trauma and a lack of secure attachment early in life often drive this diagnosis, so relationships can pose a threat. That’s why I was particularly inspired by this story.
My daughter was working on a homework assignment when she found the video. She knows I enjoy all kinds of art, and this was a medium neither of us had seen before: light art photography. I was intrigued and captivated not only by the art, but how the video told the greater story of this man’s life. Finding his passion had been a pivotal, defining moment for him, but even greater was finding a community of like-minded folks with whom to share his passion. One approach the Interdependence Network has explored for building relationships is the 4-step process of 1) identifying a passion, 2) discovering where it’s celebrated in the community, 3) connecting with the gatekeeper in the group, and 4) joining the group. The twist in this story is that the group was online. Following a different path toward the same goal, Christopher’s art became the gatekeeper, the commonality that overrode the differences and created connection. Of the group his says, “I posted my first pictures to Flickr and almost immediately someone from the light junkies group invited me to the group. And I discovered this amazing community. They nourished and encouraged and I wouldn’t be here and gotten this far without them and their support.”
As we continue to support people to grow and develop new relationships, I think this story is a great reminder of how powerfully they can impact a life. I also think it illustrates the need for creativity. Online communities have their risks, but in this case it met the need for connection without the challenges that face-to-face relationships can pose. I hope you feel inspired as I did when you watch this beautiful video: https://www.youtube.com/watch?v=irAXgWjr2Uo
The 2014 San Jose Symposium Report
A big thanks to Cathy Bouchard, Rex Zimmerman and the whole Hope Services crew in San Jose for hosting our latest symposium on April 4, 2014 in San Jose California. Over 50 people participated in lively discussion and debate, and it was one of the best symposiums to date.
The challenge of self-determination, consumer satisfaction and community inclusion is front and center with most human service organizations today. Individuals and organizations have realized that the traditional public and private methodologies have not led way to the inclusive opportunities that are wanted. Consequently, new approaches must be sought and developed.
Interdependence is a concept that reframes the structure around human services. It is an approach that focuses on assets and looks to build partnerships and consensus. It suggests that the realities that surround people who use human services are often not the issues that services must be framed around. Rather, Interdependence appeals more to the realities of relationships and the basics of human values that we all crave as members of groups within our greater culture.
The concept of Interdependence uses a macro perspective that demands we understand culture, community and social capital. Using the metaphor of a bridge, we can better understand why people with differences remain in separate, offset places. Although a person’s difference might separate them from others, it is the passions, capacities and similarities of people that can create the foundation to build the bridge back to community. On the other side of this bridge is the community, with all of its customs, rituals and structure.
In order to be successful, we must look at community and how relationships are built. We define community as a “network of different people, who come together regularly, for something in common.” This definition helps us understand that building relationships is a process and as support people we can facilitate this process. The 4 key steps in the process are:
Al explaining the importance of our social capital.
1. Identify the passions, interests, hobbies, and avocations of the person. (Find their similarity)
2. Find a community or group that meets around the same commonality you found in the person you support. (explore www.meetup.com)
3. Study, observe or discover the key behaviors that are expected in this group. (So you might coach or prepare the person for what is expected)
4. Find a “gatekeeper” or influential member already in the group and ask them to introduce your client to the others. (So that their value spreads to your client)
It is important to appreciate the influence of these four steps. They create the process necessary for people to begin to develop social capital. The more time people spend and the more similarity they exchange, the greater the chances that a relationship will unfold. More forward thinking individuals and groups are beginning to embrace and utilize the component parts of Interdependence to not only approach human service needs, but to build the very fabric of their communities. Such was the activity recently supported by the Milbank Foundation for Rehabilitation at the Interdependence Network Symposium at the Sobrato Center for Nonprofits in San Jose California.
SOCIAL CAPITAL AND COMMUNITY ENGAGEMENT: IDENTIFYING STRATEGIES
Should Do
The first task was to become clear on what we should (vision building) do individuallyand collectively to build opportunities for all people to be more active in the community.Using an interactive, nominal process the groups identified many strategies that they should do:
David helping his group brainstorm.
1. Lead by example
2. ncrease training opportunities
3. Foster valued roles within community environment
4. Smile…positive 1st interaction
5. Support individuals as individuals
6. Help person identify value and foster it
7. Improve transportation options
8. Listen more
9. Taking advantage of tech/social media to encourage inclusion in community
10. Assess your own social capital
11. Measure/Assess social capital as part of IPP process, include in goals
12. Close group homes and sheltered workshops
13. Get more funding to meet individual needs
14. Educate the community
15. Change intake process to better understand and serve
Jamie's group identifying strageties
16. Volunteer my own time to support social capital building for individuals
17. Reintroduce to neighbors
18. List natural supports & resources in each person’s communities
19. Think creatively about how to expand natural supports
20. Always consider quality of life “Is this good enough for me”
21. Use person centered tools
22. Staff actively recruit gatekeepers
23. Help people identify their interests
24. Research & ID community resources
25. Find people with common interests
26. Get staff active in local communities
27. Make a community map for each person
28. Involve families
29. Think more macro then micro
30. Develop more partnerships/relationships with community members
Creating a blueprint for change
31. Staff and ability to take individuals out for one on ones based on interests
32. Clients having a voice in the activities
33. Employing staff that want to be there
34. Assist clients in volunteering in community
35. Intentional creation of natural supports
36. Think about transportation
37. Increase visibility and exposure meaningful way
38. Increase employment options for people
39. Be person centered when developing new programs
40. Share success stories
41. Nurture concept of value add of people with disabilities to community
42. Help people meet their neighbors
43. Releasing own agenda
44. Be engaged in the community and get to know what’s happening
45. Help people get contact information from people they have similar interests with
46. Bridge the gap and fade out the support to encourage the relationships to build
47. Support staff to be involved and contribute in systems change
48. Train staff to help prepare folks to engage in community successfully
Could Do
The next step was to reconvene and the same work groups converted their list of "shoulds" into ones they could actually do. This conversion created a new list of "coulds". This new list included real actions that group members think they can actually do in their daily life.
1. Develop more partnerships/relationships with community memberships
2. Staff training and education
3. Get families involved to find out what the client needs for support
4. Asking clients and staff for feedback on ideas
5. Connect HOPE with Project Cornerstone
6. Be person centered when developing new programs
7. Nurture concept of value add for individuals with disabilities contributing to community
8. Bridge the gap and fade out the support to encourage the relationships to build
9. No bad ideas and don’t be afraid to fail
10. Dig deep to find out what is important to people
11. Introduce people to neighbors
12. Train staff how to connect people with disabilities with their co-workers
13. Encourage people to join service clubs
14. Increase volunteer opportunities and opportunities for involvement with universities
15. Find 3rd places – regularly engage in these activities
16. Try Meetup.com to find out about community activities
17. Lead by example, listen & smile
18. Hiring practices to focus on better matches to support individuals (& CEU options/trainings)
19. Collaborate cab company that supports service to community and transportation for individuals that incorporates a valued role within service
20. Create community connections both with in the community and settings and site based programs were access may be limited or challenging
21. Educate the community (not to be scared, but rather to understand needs, differences, and similarities
22. Volunteer my own time to support building social capital and community inclusion
23. List and understand “natural support” in each persons community and think creatively about how to expand them
24. Always consider “quality of life” issues and “is it good enough for me? Never forget the client
25. Train staff to help prepare folks to engage in the community successfully
It was exciting to see the similarity and diversity of opinion on this issue. One theme was abundantly clear, if we are to build a culture that truly finds opportunity for community inclusion, we must change some of our current behaviors.
THE PATH FORWARD
Change is never easy. People and organizations have a propensity to keep the status quo, reject new ideas and continue the course, even if it does not solve the problem. Yet to stay the same is to stagnate.
What you have just read is the fuel for change–the raw material of growth. The strategies listed offer us a map to a new place–one that is at higher ground, further evolved. Know, however, that the achievement of some of these solutions will not come easy. They require a conscious and direct effort. They also require that individuals and organizations have a warm and hospitable core.
Either way, we must step forward to address these issues. Rarely do people realize the opportunity we have to touch lives and, in turn, impact our culture. How fortunate we are–yet how serious the task. Thanks for all that you do and best of luck in continuing to build a community where each belongs.
Thoughts From a Parent
[This post comes from Joanna, a parent, who attended the IN Symposium in San Jose on April 4. She raises some great questions that everyone who works with children with disabilities should consider]
Friday's symposium has been heavy on my mind and had a thought that I wanted to float before you to see what your thoughts were. While I realize that the social capital discussion was for all developmentally disabled folks, I can't help but think individuals with autism who are aging out of the educational umbrella and how important social connections are and how difficult it can be for individuals on the spectrum. I know for my son, early learning and repetitive exercising of skills learned are the only way he "owns" an ability. I wish that when we began our years of ABA therapy, speech and language therapy and social skills groups that social capital was explored in a meaningful way (involving lots of the "shoulds and coulds" that were presented on Friday.
I feel that social capital is an integral piece of the puzzle that signifies success in all adult area's of a developmentally disabled person's life and that if we were to involve the various Behavioral Therapy companies (ELCA, I Can Too, etc) and encourage them to "teach" the younger individuals with disabilities AND the family on discovering and nurturing the "natural supports" that already exist for a youngster on the spectrum, the greater the chances are as an adult to utilize that skill set. For many families with children on the spectrum, our front line of defense is usually our ABA therapist, speech and language therapist and occupational therapists. It only makes sense that we enlist their support in helping us create that social capital between the typicals and the not so typicals.
It has been my experience that many families isolate themselves or are isolated by others once they receive the diagnosis and so it can be very difficult to "put yourself and your child" out there for fear of non acceptance, ridicule, ignorance. Simply put, we as parents are too close to the subject at hand. If we were to have the assistance and expertise by our ABA and other therapists we might be more willing to continue to try to utilize our community as our "village".
Just as Friday's symposium was presented more for the gatekeepers of adults with developmental disabilities and their social connections, it might be equally important to involve the early childhood therapists in understanding and creating curriculum to implement social capital at a early age. Would there ever be opportunities to present or discuss with the various early childhood therapists and educators on the importance of social capital and how they can be a rich resource in teaching those skills and involving a families natural resources?
Thanks for your consideration! Just some random thoughts I had early this morning!
Interdependence in Action: A New Focus for Old Programs
John F. Murphy Homes, Inc.
Supporting individuals with intellectual and developmental disabilities and Autism has been the mission of John F. Murphy Homes, Inc. (JFM) for more than 33 years. Priding themselves in delivering progressive services, JFM has developed a niche for providing safety and security to those who struggle with significant behavioral challenges. For a decade, its services focused on keeping people busy with leisure or lower level “work” activities and behavior modification interventions, for those who needed it. Helping people connect with each other and the community was not the primary goal.
More recently, however, JFM’s services have begun to shift from providing stability, to helping people thrive. This was the first step for the organization in taking a long, hard look at its services. How would it need to change the way it does things so that the people supported could make better and deeper connections? What information and skills did staff need to obtain? Were there ways JFM could modify the planning process to help create the outcomes they desired? Learning how to support people to move beyond very real barriers toward authentic engagement with the community became its mission.
Taking from new developments in Positive Psychology and Neuroscience and older theories like Maslow’s Hierarchy of needs, JFM began to take a very holistic approach to social capital. They realized that a great many of the people supported had had difficult and often traumatic experiences. These have led not only to behavioral challenges, but difficulties with developing relationships as well. JFM began to look at how it could help shore up peoples’ physical, emotional, social and spiritual foundations to increase their capacity for relationship building.
JFM’s first step was to look at sleep, nutrition and exercise. Is each person getting 6-8 hours of good sleep a night and, if not, what types of support might be needed to achieve that? Are they eating a variety of brightly colored fruits and vegetables to improve their nutrition? Does everyone get outside in the sunshine for at least 30 minutes of healthy activity each day? These three areas provide an important foundation for good physical and mental health.
The next step was to assess whether a person has the skills to self-soothe when a situation becomes stressful. The traumatic experiences that many people with disabilities have experienced have sensitized them to stress, making them more likely to over-react or withdraw. Daily exercises in relaxation and mindfulness help increase the ability to maintain emotional balance—a prerequisite for developing and maintaining positive relationships. Gratitude journals help teach the skill of focusing on the positive and the things that are good and enjoyable, counteracting the brain’s propensity to focus on the negative. Providing these types of trauma sensitive interventions teach positive coping skills and widen the door of relational opportunity.
JFM’s third step utilizes the VIA Character Strength assessment (www.authentichappiness.com) to determine a person’s top five character strengths. This assessment is lengthy and not every person will have the attention span or the intellectual skills to comprehend all of the questions in the assessment. In these circumstances, the Person Centered Planning Team assists by reviewing the list of 24 strengths and determining together which strengths best describe the person. Determining each person’s character strengths has had a profound effect on the planning process. Often, services at JFM had been so focused on changing interfering behavior that we have failed to appreciate the strengths each person possesses. It has helped the organization make shift the focus on to how capable people are rather than what they need to change. Once character strengths are identified, they consider the person’s interests and passions. Combining strengths and passions has provided new ideas and inspiration for where and in what capacity people might connect with the community.
The ultimate goal has been not just to get people involved in the community, but to look for ways to help them gain a new role. JFM looked for opportunities for their people to serve or volunteer, not as an end in itself, but as a way to contribute to others. When people serve, their value increases in the eyes of others, moving them from a burden to someone capable of contributing. In addition, the person gains the opportunity to experience the joy of giving, something we have often robbed them of in our role as service providers. For a very long time, people with disabilities have been recipients of services, but have not been given the opportunity to reach out and give of themselves to help others. Engaging people and the community in this way has led to some surprisingly wonderful outcomes.
Through reflection and honest dialogoue about their services, JFM has began to change the culture of its organization. Here are a few stories of how this looks like on the individual level:
Tracy struggled most of her life to find her way in the world. Difficult/traumatic experiences coupled with intellectual challenges made coping with life more than she could handle on her own. However, finding supports that could keep her safe and provide stability proved nearly impossible for almost 40 years. But all of that changed 10 years ago when JFM. began supporting her. A very structured, behaviorally based program provided Tracy with what she needed to find stability. Healing, however, was illusive.
Tracy loves to cook and enjoys children. In the past, her personal challenges got in the way of pursuing these passions, but focusing on her strengths rather than those challenges changed everything. Tracy began meeting with a friend weekly to work on making blankets, which they then delivered to the Ronald McDonald House for the families who reside there while their children receive medical treatment. The feelings she experienced helping children in this way were new and positive. Then Tracy cooked a meal for the families and began bringing baked goods to daycare centers, nursing homes and a local mission. Within 6 months of beginning these new activities, Tracy no longer needed a gait belt to keep her from falling or a helmet to protect her if she did fall. And the number of days life overwhelmed her coping skills decreased by half. Tracy still needs a high level of support, but the impact of giving to others and focusing on what is good in her life rather than what needed to change has enhanced her life far more than the previous 10 years of behavioral interventions. Engaging with her community has not only increased her social capital, but she has experienced both the physical and emotional benefits from finding her purpose and giving to others.
Steve is personable and loves to learn and has a passion for history. He used to take walks through cemeteries and do rubbings of the headstones, but it didn’t help him make any new friends or give him a sense of purpose. In the past, our focus on ameliorating his intractable mental health issues clouded our ability to appreciate his humor, creative problem solving and people skills. Now, he is a member of the historical society in his town. He attends meetings and helps put on fundraisers. It has given him a sense of belonging and his meaningful contributions the society are valued by the other members.
Changing the culture at JFM has not come quickly or easily. It has and continues to be challenging to identify the best way to implement change. Training the 450 professionals who provide support in the residential services program is a big job, especially with ongoing budget cuts. And they continue to wrestle with how best to teach staff the practical skills needed to help people make meaningful connections in the community. But the successes JFM has had the privilege to witness and the contributions that have begun happening keep them pressing on to create more relational, strength-based supports that help people connect more deeply with their community.
Organizational Culture Change
The first critical issue in any change effort is the awareness that we need to change. It is clear that providers of services to people with disabilities still do not have a solid understanding of social capital as a rehabilitation concept and outcome. Perhaps it is too simple, or maybe too “touchy-feely” – certainly, rehabilitation success with people who have significant disabilities can not be as simple as “more friends?” Yet, when we look at social capital from a broader perspective, or think about it in our own lives, the impact is clear. Friends are fundamental to our health and to having more opportunity in our lives.
Everyone associated with the organization must begin to critically re-think the purpose behind their work by asking the two questions ‘how is what I am doing helping a person that I work with to become more connected to their community’ and ‘what can our agency do with our existing resources to help people build more relationships and connections to the community?’
IN member CLASS led this visioning exercise by organizing the agency’s leadership, board of directors and folks being served to conduct a S.W.O.T. analysis of the agency as it related to Interdependence. A S.W.O.T. analysis looks at the Strengths, Weaknesses, Opportunities and Threats related to a particular initiative, in this case it was focused on helping people to develop community connections and building social capital. Everything the agency did or said was examined, including the agency’s mission and vision statements, the types of programs being offered, and how staff were being trained.
This process was the ultimate product because it infused into the fabric of the organizational culture the principle that relationships, and the resulting social capital were important. This was the first step in creating an agency culture in which relationships are the most important outcome. It is this simple change in perspective that sets the Interdependence approach off from the typical medical approach to services.
The Importance of the Gatekeeper
The final step in cultural shifting revolves around the gatekeeper. The only way new people, ideas, or products can successfully enter an existing community is when they are introduced and endorsed by a viable gatekeeper. A gatekeeper is an indigenous member of the community who has either formal or informal influence with the culture. These gatekeepers can be formally elected or selected leaders, or they might be one of the members who everyone can count on to get things done.
These gatekeepers are powerful because they transition their influence to the person, idea, or product they are endorsing or rejecting. This transition of influence is the first step to the inclusion of the new thing into the culture. The mere fact that the gatekeeper likes or dislikes the idea is enough to sway other members to his or her side. Remember, 60% of the membership of any community is usually neutral (or slightly on the negative side) on issues. The gatekeeper uses his or her power and influence to persuade others to follow his or her lead. The assertive gatekeeper will readily offer his or her opinion; the unassertive gatekeeper usually must be asked.
To effectively shift a culture to accept something new requires that the change agent identify and then enlist a gatekeeper to facilitate the passage. This is simple yet complex in how it plays out. On the one side we know that gatekeepers are a part of any culture or community. We know that 20% of these gatekeepers are positive people interested in taking risks to promote things they feel good about. We know that when the gatekeeper endorses a person, idea, or product, other members observe this and open their thinking to the same. We also know that the more enthusiastic the gatekeeper is to the new item, the more apt others are to do the same. All of this makes sense when we think about culture and community. If you want to bring a shift in cultural perspective, the endorsement and support of a gatekeeper is absolutely essential. To this end, then, the ability to identify and then ask for gatekeeper assistance without being perceived as attempting to meddle or influence is a true art in changing culture. This may play out differently for people than for ideas or products.
In his book The Tipping Point, Malcolm Gladwell reflects on the kinds of people necessary to move something from one level to another. The movement of ideas, products, or even people ultimately has a tipping point. Gladwell looked to understand how this might work. In his book he describes three types of people who move ideas, people, or products into the mainstream. He calls these folks “connectors, mavens, and salesmen.”
- The “connectors” are the people with broad circles and those who can influence a lot of these people. These connectors are unique because their circles extend beyond the usual parochial boundaries.
- The “mavens” are people who have a deep level of information and who are always looking to share this information with others. A key thing about mavens is that they get nothing for their information. They share important and useful things because they enjoy helping people.
- The “salesmen” are passionate purveyors of ideas, products, or people. Salesmen may not necessarily have deep relationships, but they have the opportunity to share things.
A gatekeeper is a person with one, two, or all three of these qualities. Gatekeepers are the key to cultural shifting by promoting and rejecting things that push the community to a new level. The way they influence the culture can be either positive, when they support and endorse the new person, idea, or product; or negative, when they oppose or work against the new person, idea, or product.
Over the years anthropologists have attempted to examine what type of people lead to social change and cultural shifting. As new things help to develop or enhance the existing culture, the elements of positive gatekeepers become important to understand. The theory behind this is called social influence theory. This theory teaches us the following facts about gatekeepers:
- They tend to be positive people. They genuinely like people and look for the good in everyone they meet.
- They are social risk takers. They reach out to the underdog and are willing to take cultural flack if need be.
- They reach out to new things, and they are curious and interested in why, how, and why not.
- They tend to be younger people and not so caught up in dogma.
- More often than not, they tend to be women. Men are usually more conservative and they become more easily set in their ways.
- They are highly social and tend to be good mixers.
- They tend to have respected influence with their community.
Positive gatekeepers are essential for the diffusion of new ideas, products, or people to penetrate into an existing community. The positive gatekeeper who steps forward to introduce or to endorse something new is critical to helping a new person in becoming a valued and respected member of a new group.
The 4-Step Community Building Process: Step 3 Understand the Elements of Culture
Step 3: Understand the Elements of Culture
All communities have key ingredients that make the community a community: These include common rituals, patterns of behavior, and, often, jargon. As we look at Step 3 in the process of making change, these elements of culture become critical to this thesis. That is, once a person has expressed an interest in looking further into something that excites him or her and discovers that a culture exists, the next logical step is to understand and then carry out the actions of the culture in an effort to join. When the actions of culture get defined in the following four ways it gives the newcomer clear things to consider in joining. The more one understands what the community does that is common, how its members move about in accomplishing those things, what words and phrases are used to communicate their actions, and the history that bonds its members, the more easily the understanding will become assimilated into the fold.
For cultural shifting with people, this process is best done by observing the community in action and being clear about your observations. These observations will help you to be able to clearly consider the actions you will need to do to be more easily included into the community. The sooner you come to know the rituals, patterns, jargon, and memory of the community, the quicker your passage.
In cases where you are considering the inclusion of people you work for or care about, the process is the same. That is, the observation and analysis of the rituals, patterns, jargon, and memory of the culture will help you gather the information to pass on to the individual you are helping. In many ways this is what we do with our children. Once we locate a possible venue for them, we gather as much information as we can to see how other members behave, move about, and talk.
In situations where new ideas or products are being considered, Step 3 is adjusted. The elements of the culture are important, but they must be framed around how the idea or product might influence or impact the rituals, patterns, jargon, or memory of the culture. Indeed, new ideas or products will always change or adjust the rituals, patterns, jargon, and memory of the community. These influences must be identified and understood so as to offset challenges by the negative gatekeepers. For example, if a new computer methodology is being introduced to a group and will influence how the group does its business, the change agent needs to know this and be ready to prepare members for these changes.
To this extent, with ideas or products the change agents must do a probability analysis of impact on rituals, patterns, jargon, and memory of the culture. They need to remember that most people will be somewhat resistant to this new idea or product. The sooner they can focus on the impact and prepare the group for change, the easier the new idea or product will be diffused.
Either way, for people, ideas, or products, understanding the elements of culture becomes a critical piece to the process of Interdependence. The easiest way to gather this information is to observe the culture firsthand. In this observation, the change agent wants to be open, receptive, and highly observant of the cultural nuances. He or she needs to make mental notes and, at times, formal notes if the culture is complex.
If observation is impossible, another way to gather information is to ask others. This type of interviewing will glean important information and perspectives from people who have had previous experiences with the culture. These leads can be invaluable. Be cautious, however, of the possibility of bias or bad information. Sometimes the informant may have an ax to grind or may be suspicious of your questions and intentionally skew the information he or she gives.
A third method for learning the elements of community is to read. Often information for prospective members is easily at hand. As with most written information, it is usually simple and abbreviated. Sometimes this abbreviation can be a problem as nuances are left out. Successful change agents will try to use all three methods. They ask, observe, and read as much as they can about the community. Usually if you do these three things, you will not go wrong.
The 4-Step Community Building Process: Step 2 Find the Venue
Step 2: Find the Venue or Connection Point
Once the change agent has identified the positive capacities for inclusion or incorporation, the next critical step is to find the place that the person, idea, or product will relate. Quite simply, finding the setting where the person, idea, or product might be accepted sets the stage for inclusion and cultural shifting.
By “venue” or “connection point,” we are referring to the viable marketplace for the person, idea, or product. With ideas or products the change agent can think in the conventional framework of a marketplace. That is, if you have developed a product that is best suited for accountants, your potential marketplace would be with the fiscal offices of a corporation or with an accounting firm. These or similar marketplaces offer the best possibility that your product will be understood and, hopefully, purchased.
With people, the concepts of venue and connection point have equal importance. If you are looking to find a framework of new friends, you have a much better chance of connection if you take a hobby, passion, or capacity and join up with others who share that same passion. A good example is the efforts we make with our children when we attempt to broaden their horizon.
In a more formal way, this step works with agencies that attempt to connect people back to community. One example from our agency is the story of David. Al first met David while working years ago at our local county home for the aged. One of our first efforts was to help David begin to meet people and make new friends. Using the capacity model portrayed in step 1, we identified a number of things David enjoyed or had an interest in. One of these passions for David was oldies music. While at the facility, David listened regularly to oldies music on the radio. After he moved into his own apartment, we identified an oldies club not far from where he lived. This venue offered a good starting point for David because he had a natural affinity for the same common theme, which attracted others together.
The secret to step 2 is to find the appropriate venue that matches the interest or positive points of the individual. In many cases, this is anthropological work. We know that people gather for all kinds of reasons, but the most powerful reason is to celebrate that which they share. Finding the matching community for the interest is critical to meeting new friends and, possibly, changing the culture. In David’s example, finding the oldies club was a direct match to his interest in oldies. Often we have to look closely, but the process accelerates by asking people who might know. In David’s situation, we called the local oldies radio station to inquire. The resources are out there; we just have to find them.
One powerful strategy in Step 2 is found with the website www.meetup.com. Some of you reading this book might be familiar with this social networking website, but, if not, it offers a wonderful and easy way to find a community-based venue that matches the interest. When you log onto meetup.com, you will first be prompted to identify what country you want to search. As you know, the Internet has created a “global community,” and so there are meetup groups all over the world. Once you identify the country, you are prompted to identify a postal or zip code. This allows the meetup search engine to hone directly into your community.
Last, you then have a search bar to enter in a “keyword” that identifies your interest, passion, or affinity. When you hit the “enter” button, the search engine will display every club, group, or association that is registered with meetup in a geographical order starting with those groups closest to your zip or postal code. If this is not enough, the listings of groups are further developed with information about the groups’ patterns and expectations, and meetup even identifies some club members and offers their email addresses so you can connect electronically.
Now, one caution about step 2 must be addressed when applying the steps of cultural shifting to people, especially newcomers who have been excluded. The existing members of community may not see or understand the relevance for people who have been traditionally excluded. For example, people with disabilities have been historically separated from typical populations. Given this historic sense of congregation, the natural tendency, even for professionals in human services, is to keep these same people congregated. That is, if we discover in a capacity exploration from step 1, that our friend David loves the oldies, a natural propensity might be to see if there are other people with disabilities who like the oldies and then put them together. How many times do you see groups of people with disabilities doing the same thing together? This phenomenon is evident in our stadiums or theaters that have “handicap sections” where all folks with disabilities are herded to watch the game or show.
Even when we find the appropriate natural community venue, the energy to congregate people might unfold. An experience a few years back drove this home for us. CLASS was assisting a friend to connect in the community. Using step 1, we discovered that Jim had an interest in swimming. To build on this we went to step 2 and explored Jim’s community to find a swimming venue. We decided on the local YMCA near Jim’s home. When Jim and Al went to the YMCA to get him a membership and find out more about the swimming options, the membership director pulled Al aside. Using a soft voice so that Jim wouldn’t hear, he told Al that he could arrange for the agency to have the pool all to itself every other Tuesday evening. This way we could bring all the handicapped people we like and they could swim together. Even the YMCA membership director thought about people with disabilities in a congregative manner.
The bold fact of all these experiences is that people gather. They gather for all kinds of reasons and interests. For every capacity or passion there is a place that people gather to celebrate these passions. Once we get over our habits of segregation and congregation we can come to see that these places are ones that offer a wonderful starting point to culture. In these gathering places we can find the key to cultural shifting and the dispensing of social capital and currency.
The 4-Step Community Building Process: Step 1 Find the Passion
Step 1: Find the Passion or Point of Connection
Finding the key points of strength and passion is the first step to cultural shifting. To build a strong bridge we must have a solid foundation to ensure the bridge will be safe for passage. The passage of people, products, or ideas into culture requires the same strength. To this end we must identify all that is strong or good about that which we hope to shift the culture around.
For people, this means we look for the following elements in them:
- Passions
- Capacities
- Interests
- Hopes
- Dreams
- Skills
- Talents
- Fantasies
- Propensities
- Avocations
- Hobbies
- Strengths
When we find any or all of these things in people it helps us in two ways in supporting them. One is that the identified passion or skill helps uplift the person. In fact, it is a type of empowerment. What we mean here is that when a passion is identified in a person, the acknowledgement of this passion is extremely strengthening. People like to talk about that which they enjoy, and this leads to empowerment. Think about it—empowerment is a feeling we get when we are relevant and respected. When we identify a person’s skills, this naturally makes him or her feel good.
Contrast this with a focus on people’s problems or deficiencies. When you identify problems, especially those that are difficult to address or erase, you are actually disempowering. You never feel good about the things you cannot do or the things you do not do well.
This negative perspective, however, is exactly the way our system deals with difference or disability. Think about it. When a person with a disability is referred to a human service agency, the first thing that happens is a formal assessment of the person’s problems. These assessments are performed with detailed tests and reports. Once the problems are identified and labeled, an individualized program plan (IPP) is developed, and most often the effort is to fix the person’s problem.
This deficiency model creates a negative slant and skews the process. It causes people to think negatively and critically about their reality. Further, serious frustration can occur if the problem cannot really be fixed. In many ways this is not the route to empowerment. In fact, focusing on problems continues to bait negativity and it sets the tone for a poor self-image.
The capacity process suggests the exact opposite. By looking for those things that are positive and strength oriented, we can help people build on those capacities they already have and promote their relevancy to the community. The same is true with products or ideas. When we look for and find the positive elements of ideas or products, we signal the initial points of connection of these things to the greater community. Obviously, when we itemize the good points of an idea we are more apt to get others to endorse or embrace that idea. The same is true with products. That is why advertisers stress the positive aspects of their products. As simple as this seems, the positive factors are the reason you buy the product.
The following experience highlights this notion. A number of years ago one of the authors attended a three-day gathering with people from all over the country. When the presenter came into the room, he asked everyone to take out a sheet of paper. He asked everyone to write the word “positives” on the top of the page and to privately identify as many good things about themselves as they could. Folks looked around at each other and then started in on the task. Within five minutes the presenter got their attention and asked them to again take out another sheet of paper. This time he told them to write the word “negatives” on the top and fill in as many problems, deficits, or struggles they have. Again, people got right into the task. At this point the presenter asked for a volunteer to illustrate some points. As is typical, most folks looked away, but the presenter made eye contact with Al. “Sir, please stand up and pass your positive list to the person to your right,” he said. Being the good volunteer, Al complied with the request and passed his “positive” list to the person to his right. To this person he did not know, the presenter said, “Please introduce this man to your left, using his list as a guide.” This person stood up and began to introduce Al by referring to the good things he had written about himself. Al smiled sheepishly and looked around at these unknown people as he was being introduced. Shaking his head affirmatively, the presenter then looked back at Al and asked that he now pass the “negative” list to the person to his left. Al paused and then hesitantly handed his second list to the person. Again, an introduction occurred by a stranger, this time using Al’s “negative” items. Al did not know these people and as they came to know him through his problems and struggles he felt embarrassed and ashamed. Even as a conference activity, when you are identified with negative items, it hurts.
In many cases people know their passions and interests, and they are quick to tell you if your bent is toward looking for the positives. With other folks you have to dig. In the work we do with our agency, we often meet folks who have been so sheltered or inexperienced that they do not readily display their passions. Some people have been so devalued that they cannot seem to find their passions at all. In these types of situations we must give the time and space necessary for people to identify those points of connections. This only happens when people feel valued and respected. It also happens when we welcome and include those who have a history with the person to help uncover the passions. Families or other relations have been invaluable for the capacity-building work we do in Pittsburgh.
Investing in Social Capital
If there is a single dimension that must be repeated and underscored with Interdependence, it is that of relationships. Our daily contacts with others are what make our lives rich. Just think of your typical day—the people you touch, the people who touch you. It boggles the mind. Yet without them, how lonely life would be.
However, our experience suggests that most people with disabilities have deep social distance from typical, freely-given relationships. We know too many people who only relate with human service professionals who are paid to be with them. Indeed, in a recent project completed by the Interdependence Network, a coalition of human service agencies interested in social change, this is exactly what was found. After interviewing more than 200 people with disabilities supported at human service agencies across North America and Canada, the group found that most people with disabilities spend most of their free time socializing and engaging in activities with staff.[i] This is not an indictment of the thousands of caring direct care staff, but a healthy, happy life includes multiple types of relationships. Certainly there is a role for staff to play, but we do not think the role is “best friend.”
Often, members of the community are under the impression that people with disabilities are just fine in their own world. Further, as this concept develops, human service workers may be perpetuating the myth. To this point, we have had professionals boldly tell us, “Come on, do you believe that there are typical people who would choose to be a friend to a person with a severe disability?”
It is amazing that people with this notion are in human services. Can you imagine the audacity and baggage of this statement? We need to reflect and ask what creates the real problem in this relationship issue. If we question the viability of people who have a disability, then WE ARE PART OF THE PROBLEM! If we perceive that the key to the relationship problem is found in needing to teach people with disabilities relationship skills, then we need to ask ourselves to reassess. Many people who have disabilities may never learn the “appropriate skills” of relationship building, and should this be, then, an end to their community quest? We think not.
We need to pause here and reflect further on this issue of relationships for people with and without disabilities. Recognize that most people with disabilities are often caught up in a homogeneous world where they are surrounded by other people with disabilities. Because most friendships need the fuel of proximity and because people with disabilities are thrust upon each other in disability-specific programs and environments, relationships between people with disabilities abound. These relationships seem normal, and often support people promote them and think they are appropriate or, worse, “cute.”
Not only can this be demeaning, but it can be atypical in the promotion of relationships. Now, it is true that most of us develop relationships from a basic sense of homogeneity. You probably grew up in a town where most of your neighbors and classmates were socioeconomically and culturally similar. As you aged, your relationship experiences probably diversified a bit. To this extent, you started to meet and connect with people who had differences. Think about when you went off to college or the military and the myriad of different people you met.
As these experiences mature, however, diversity brings an interesting enrichment to our lives. That is, as we meet and relate to different people, in an unconscious way, we start to place ourselves in a broader scheme of life. This type of comparison allows us to stretch our awareness of self and life. To this extent, diversity is the stage of growth.
Think now about people who have no actual chance to relate to different people and who are constantly in the company of those exactly like them. What a narrow and limited perspective. Yet in many regards, this is exactly the world we have created for people with disabilities.
At CLASS in Pittsburgh, a four-step process is used as the foundation for supporting community engagement:
Step 1: Find the Passion or Point of Connection
Step 2: Find the Venue or Connection Point
Step 3: Understand the Elements of Culture
Step 4: Find or Enlist the Gatekeeper
This basic model is used by all our programs in some fashion, from our Skill Building Programs to our kids’ programs. Success in the community starts with getting involved. The approach promotes diversity in relationship opportunities. To this extent, people with disabilities and those without disabilities are encouraged to connect. Indeed, the more exposure people with disabilities have to people without disabilities, the quicker the realization of Interdependence and the broader we become as a society.
Given the impact of a broader perspective, next month's posts will look at each of these steps more closely.
[i]. Dimakos, Kamentsy, et. al. Somewhere to Live, Something to do and Someone to Love: Measuring Social Capital Among People with Disabilities. In Press
The Other Side of Inclusion
"I do not give a fig about simplicity on this side of complexity; but I would give my arm for simplicity on the other side of complexity" - Oliver Wendell Holmes
I remember reading this quote years ago and pondering its impact. Justice Holmes wrote this in contemplation of the law. He relished the simple notion of the US legal system, innocent, until proven guilty. Yet in law today, as in Justice Holmes day, is decidedly complex. Many an innocent person, has been convicted of wrongdoing. Indeed, we know today that the "Innocence Project," an effort to use DNA evidence, has freed over 100 previously convicted people in the US who were thought to be guilty.
Justice Holmes knew that even an accusation in many situations, was tantamount to being convicted. He knew how complex the law is, and how difficult it is to get on the simple side of complexity.
With all due respect to Justice Holmes, I believe the same adage can apply in the field of human services. There are hundreds of thousands of people that are not active, engaged, or included in the general community. These people include persons with disabilities, elderly folks, individuals encased in poverty, and people who are experiencing mental health issues. The simple notion for these people is that they would love to be involved, included, or active in community, yet, they are caught in a huge web of complexity. This complexity is tied to their condition, situation, eccentricity, or perceived problem. In essence, they are thought to have a highly complex problem or issue.
As I have pondered this phenomenon in my 40 plus years as an advocate in the disability arena, I can't help not thinking about Justice Holmes admonition. How do we get to the simple notion of community inclusion, when we are confronted with these huge complexities of disability, age, or poverty? And then it hit me. We are caught in a "micro" web of analysis, and this complexity of condition has blinded us to the simple notion of community engagement. Allow me to explain.
The Micro Perspective
All people want simple things. They want to be able to get a job to earn money, they want to do meaningful things with their time, they want to live around people they like, they want to be able to get around and engage in the community, and they want to build relationships.
Yet, when people begin to experience struggles, or demands that can be complex, like the advent of a disability, or challenges brought on by aging, or economic struggles that can occur in the natural rhythms of life, these people get thrown (referred) into a complex web of actions. That is, often these people enter systems, or agencies that are hell bent on helping them, but look at their situation through the lens of their disability or infirmity.
This micro interpretation has good intentions, but much like the complex legal system, it can lose sight of the simple goals, and begin to push the person to change, adjust, or fix their problem so they can fit in to a perceived community norm. As noble as it is, the micro perspective can become a "black hole" that encases the "client" and puts demands on them that can be unrealistic, or impossible.
In my career as an advocate, I bought this paradigm and began to build programs and services that attempted to change or fix people with disabilities so they could fit into the greater community. Yet, at the end of the day, people we supported remained disconnected and socially isolated. In some twisted way, we projected these failures on the "client." We thought that they were just not motivated, or able to do the things they need to be included, or worse, we began to create alternative solutions. We developed group homes, sheltered workshops, special education classes, special recreation and initiated a "dualistic society." In essence, we gave up on the simple notion of community.
A Macro Perspective
Yet, if we can awaken as advocates, and start to think about the other side of the inclusion agenda, we might find more answers to the simple notion of community. That is, if you can not change, fix, or ameliorate a challenging condition, is this the end of the story? I think not. Indeed, there is an entirely new playing field, full of possibilities and opportunities if we just begin to look at the other side of the challenge and take a macro approach.
This perspective suggests that it is not our differences that divide us, but our judgments about these differences. That is, once our judgments expand, then the challenge of inclusion lessens. Think about it. You may have had a particular judgment about something, bore out of ignorance, or misunderstanding. But once you became more closely introduced to a situation, your judgment might have changed. Allow me a story here.
A number of years ago, I had a colleague who was deeply homophobic. He was anti-gay, and always using slurs and degrading references. Worse, he even used the Bible to endorse his views using the Book of Leviticus to justify his judgments. Time marched on, and he came to learn that one of his sons was gay. This was a telling, and taxing experience for him. As adamant as he was with his position, the closeness of family began to chip away at his judgments. With the social influence of his family and friends he began to change his judgments and soon, became an outspoken advocate for the inclusion of all people. Indeed, he even began to re-read the Bible, and for every negative interpretation he found that could relate to homosexuality, he found 10 more references about loving your neighbor, and opening your heart to all people.
Now this story has an interesting relevance to a macro perspective. That is, my friend's initial judgments were that gay folks were the problem. If only these people could wake up and change their orientation, then all would be well. This is the epitome of the micro perspective. Identify and then change the gay individual’s problem.
Yet, in a macro interpretation, the real problem was the judgment of my friend. And in the end, the change was there. Once he became closely connected to what he perceived as the problem, he began to change. There are important lessons for us in this story.
A macro agenda redefines the problem; it begins to re-interpret what normal might be and has its roots in culture change. It is an anthropological perspective, not a clinical or therapeutic one.
Now this notion of culture change or community change is not a "silver bullet" or panacea. It is not some easy quick fix. One just needs to look at macro, community history of any social movement to understand how challenging and tedious it can be.
Still, in the scheme of things, this macro agenda offers so much more possibility to us, than the micro, "change the person" approach.
Conclusion
And so Justice Holmes was right after all. Any thinking human service advocate would do well to look at the opposite side of their community agenda. If we want to help people do meaningful things and get jobs, what are the judgments of the employers; if we want people to be engaged in the community, what are the judgments of the "typical" folks in those communities? This thinking reframes the target. How can we get the "typical" person in the community to change their perspective on disability, or aging, or any other situation that disconnects people?
There is much more that can and should be said about macro change, but it is clear to me now, the first step in this macro agenda, begins with the development of "social capital" or the relationships in a persons life. That is, rather than segregating people into programmatic systems, how can we develop opportunities for disconnected folks to build social capital in the greater community.
Al Condeluci
Lessons learned from the October 25 Symposium in Pittsburgh
INTRODUCTION
The challenge of self-determination, consumer satisfaction and community inclusion is front and center with most human service organizations today. Individuals and organizations have realized that the traditional public and private methodologies have not led way to the inclusive opportunities that are wanted. Consequently, new approaches must be sought and developed.
Interdependence is a concept that reframes the structure around human services. It is an approach that focuses on assets and looks to build partnerships and consensus. It suggests that the realities that surround people who use human services are often not the issues that services must be framed around. Rather, Interdependence appeals more to the realities of relationships and the basics of human values that we all crave as members of groups within our greater culture.
The concept of Interdependence uses a macro perspective that demands we understand culture, community and social capital. Using the metaphor of a bridge, we can better understand why people with differences remain in separate, offset places. Although a person’s difference might separate them from others, it is the passions, capacities and similarities of people that can create the foundation to build the bridge back to community. On the other side of this bridge is the community, with all of its customs, rituals and structure.
In order to be successful, we must look at community and how relationships are built. We define community as a “network of different people, who come together regularly, for something in common.” This definition helps us understand that building relationships is a process and as support people we can facilitate this process. The 4 key steps in the process are:
- Identify the passions, interests, hobbies, avocations of the person. (Find their similarity)
- Find a community or group that meets around the same commonality you found in the person you support. (explore www.meetup.com)
- Study, observe or discover the key behaviors that are expected in this group. (So you might coach or prepare the person for what is expected)
- Find a “gatekeeper” or influential member already in the group and ask them to introduce your client to the others. (so that their value spreads to your client)
It is important to appreciate the influence of these four steps. They create the process necessary for people to begin to develop social capital. The more time people spend and the more similarity they exchange, the greater the chances that a relationship will unfold.
More forward thinking individuals and groups are beginning to embrace and utilize the component parts of Interdependence to not only approach human service needs, but to build the very fabric of their communities. Such was the activity recently supported by the Milbank Foundation for Rehabilitation at the Interdependence Network Symposium in Pittsburgh on October 25, 2013.
Al Condeluci speaking the crowd at the october 25 symposium in Pittsburgh
SOCIAL CAPITAL AND COMMUNITY ENGAGEMENT: IDENTIFYING STRATEGIES
Should Do
The first task was to become clear on what we should (vision building) do individually and collectively to build opportunities for all people to be more active in the community. Using an interactive, nominal process the groups identified many strategies that they should do:
1. Ask individuals what they want (assess needs on individual and community level)
2. Start from the beginning to focus staff efforts toward building social capital (language of job description, hiring, training, etc.)
3. Resource allocation (focus mission and reflect social capital (government funding and board dialogue)
4. Connect with churches, charities, and other existing infrastructure to continue community-wide dialogue(share stories and process)
5. Engaging in community mapping (understanding “local” and matching interests)
6. Brainstorm better transportation options (getting people where they need and want to be)
7. Model and bridge community engagement and relationship-building
8. Create and find work opportunities people want to do, not just what “we” think they should do
9. Educational curriculum relevant to the individuals
10. Network with other agencies
11. Putting energy into on-line vehicles(i.e. social media) to grow and support all people with disabilities in communities of faith and inclusion
12. Be an ambassador of and for people by gathering and circulating empowering information that connects the community
13. Initiate weekly “community connection conversation party” (getting to know who lives in the neighborhood, what the needs are, where the resources are, etc.)
14. Discard acronyms
15. Engaging the business community (social capital in the workplace) through education, reaching out, catalyzing opportunities for meaningful employment, etc.
16. Better educate people around socially connecting patterns, norms, actions, and ways to feel and experience belonging (teach the hidden “rules” of belonging I and to a community)
17. Run a cost/benefit analysis of accessible transformation vs. isolation
18. Tap into the power of storytelling
19. Promotion of individuals with disabilities serving on boards, community action groups, etc.
20. Eliminate site-based services, and shift paradigm from “disability” service to people service
21. Adapting building / redesign of facilities promoting the arts to become more accessible and inviting to our populations
22. Maximize inclusive options of places to live
23. Acknowledge and discuss issues as an organization
24. Eliminate the “us” vs. “them” language and mentality
25. Increase dialogue/interactions across staff/participants
26. Increase time/opportunities to meet/plan with individuals and family to discuss possible community connections (done with intention)
27. Introduce concepts of social capital from the ground up (state government)
28. Educate the greater community on inclusion and social capital as well as the smaller community we are connected with
29. Asking the people we support about relationships
30. Find ways to keep people safe in the community (including safety)
31. Imbedding social capital into government funding RFP’s
32. Help providers and family members understand, value and embrace relational safety as opposed to system safety
33. Define our compass point, and measure our success
34. Train staff to be community connectors
35. Peer-run education, support groups with opportunities, consultation, and staff (seeing people as individuals rather than consumers)
36. Create opportunities to enhance and build already existing relationships
37. Stop focusing on group activities
38. Provide resources (booklet, Internet, etc.) to share with teams to ensure it is accurate and current
39. Educate the community on the integration and inclusion (campaign)
40. Continue to engage people beyond their presenting “need” to help them create strategies to build their social capital
41. Provide transportation into the community
42. Living support including support in the areas of living, learning, socializing, and working
43. Participants in every community activity/event/board/organization
44. Change the universal symbol for disability
45. Financial assistance for community events
46. Open Universities for persons with disabilities
Could Do
The next step was to reconvene and the same work groups converted their list of "shoulds" into ones they could actually do. This conversion created a new list of "coulds". This new list included real actions that group members think they can actually do in their daily life.
1. Individual assessment of social capital
2. Help non-profits to organize themselves into a symbiotic network of thought and positive action (connecting churches, charities, etc. to encourage a community-wide dialogue)
3. Refocus staff efforts (build bridges, consumer-focused lens, recruiting, training, etc. all reflecting social capital mission and take conversation to a board / state-funding level)
a. Engaging in community mapping (understanding what is in local communities and matching interests)
b. Regional events and education to shift perceptions
c. Model and bridge community engagement and relationships-building skills
d. Create and find work opportunities people want to do, not just what “we” think they should/could do
4. Be ambassadors of and for people by gathering and circulating information that empowers people and strengthens communities
5. Engage the business community (social capital in the workplace) through conversation, education, and advocacy to catalyze opportunities for meaningful employment
6. Better educate/inform people about social norms to help them feel more connected in social groups (teaching the “hidden rules” of belonging in and to a community)
7. Turn the focus of systems toward engaging people with disabilities and enhancing their social capital to facilitate social inclusion for all
8. Run a cost-benefit analysis of accessible transportation vs. isolation
9. Transportation (Information, access, spontaneous, on-call, staffing)
10. Inclusive recreation with in-place adaptations
11. Promotion of individuals with disabilities serving on boards, community action groups, etc.
12. Education on integration/inclusion/increasing comfort level of all individuals
13. Speak up (acknowledge and discuss collaboration amongst colleagues)
14. Educate stakeholders and community
15. Ask participants about their interests
16. Plan with intention of building relationships
17. Find ways to keep people safe in the community
18. Train staff on how to be community connectors
19. Define our compass (measure outcomes)
20. Stop focusing on group activities
21. Be more open and engaging when out in the community
Will Do
The third step of the process was to have the same workgroups identify the top 5 items that they "will" do when they left the meeting. The group then recorded their 5 "Wills”.
The final activity was a reconciliation of the "will do" strategies each group identified.
1. Ask individuals what they want (assessing social capital)
2. Educating the community about our work and finding a way to promote our specific populations through positive means
3. Refocus staff goals (build bridges to focus on consumers first i.e. recruitment, training, job descriptions, etc. to aim for reinvigorating social capital)
4. Engaged community mapping (encourage colleagues and find tools to share)
5. Network, Network, Network
6. Transportation and facilities maximize utilization
7. Speak up (acknowledge and discuss collaboration amongst colleagues
8. Ask participants – interests, participation so we can plan with the intention of building relationships
9. Define compass (measure outcomes)
10. Train staff on how to be community connectors
11. Measure success of social capital building
12. Formalize the measures (use of EHR, use of student interns, build structure to enhance focus, etc.)
13. Define our compass in the day programs, set goals, and measure outcomes
14. Empower individuals to self-advocate
15. Stop focusing on group activities
16. Conduct the social capital study in Central Pa
17. Work to share resources, natural supports networks, and information
18. Introduce the interdependence paradigm in the classroom
19. Being more open and engaging when out in the community
20. Peer-run education for community/peer-run support groups
21. Write a book about ASD and relationships
22. Create opportunities to enhance and build already existing relationships
23. Regular (weekly) communication (staff, families, people supported, community organizations) related to importance of relationships
It was exciting to see the similarity and diversity of opinion on this issue. One theme was abundantly clear, if we are to build a culture that truly finds opportunity for community inclusion, we must change some of our current behaviors.
THE PATH FORWARD
Change is never easy. People and organizations have a propensity to keep the status quo, reject new ideas and continue the course, even if it does not solve the problem. Yet to stay the same is to stagnate.
What you have just read is the fuel for change – the raw material of growth. The strategies listed offer us a map to a new place – one that is at higher ground, further evolved. Know, however, that the achievement of some of these solutions will not come easy. They require a conscious and direct effort. They also require that individuals and organizations have a warm and hospitable core.
Either way, we must step forward to address these issues. Rarely do people realize the opportunity we have to touch lives and, in turn, impact our culture. How fortunate we are – yet how serious the task. Thanks for all that you do and best of luck in continuing to build a community where each belongs.
Jeff Fromknecht & Al Condeluci