The field of Brain Injury Rehabilitation is at a key juncture. If you identify the initiation of this field with the advent of the NHIF in 1980, we are now turning our 30 year corner. Much has occurred and many advances have unfolded in this time. Still, as a discipline, we are hard pressed to say that that the goals, objectives, and wishes of survivors and their families have been realized. Far too many people with disabilities are unemployed, institutionalized, frustrated and socially isolated in their lives (Erickson & Lee., 2008).
This reality challenges us to remove our blinders and look more closely at our programs, services and approaches and consider a reformation of sorts. We know that any viable change is found at the borders of existing paradigms. When we consider new alternatives we must look beyond the status quo.
I am not so bold to suggest that I have the answers, but in my 40 years of advocating and providing services and supports to people with brain injuries I do know what questions to ask. Indeed, Steven Covey suggests that you start any endeavor by beginning with the end in mind (1989). In this spirit, then, I suggest that as we start our 31st year as a discipline we challenge ourselves to do just that. What do the people we serve want for themselves? What is the end they have in mind? I think these questions will reframe our challenge and offer new ideas, directions and possibilities, and in my experience the key answers to these questions are found in the elements of viability in community and the opportunity to build sustaining social capital (relationships).
To fully appreciate how we might change, we need to examine these concepts of community and social capital in a much more deliberate manner.
Primer on Community
Community is a network of people who regularly come together for some common cause or celebration. A community is not necessarily geographic, although geography can define certain communities. To come to an understanding of community is to appreciate that community really is based on the relationships that form, not on the space. 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 are relationships forged 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 or theme, you have community.
The term “culture” is analogous to community, but culture relates more to the behaviors manifested by the community. People bound together around a common cause create a community, but the minute they begin to establish behaviors around their common cause they develop a culture. In this way, culture is the learned and shared way that communities do particular things. Cultures and communities have many features, but one key ingredient is regularity. That is, for a community to be viable it must have some regular points of contact and connection. For a family community, this might be annual reunions or the celebration of holidays together. For a religious community, this would be weekly services and holy days for celebration. For organizations, this would be regular staff meetings or stakeholder gatherings. For clubs, groups or associations, regular meetings or gatherings formalize the group as a community.
The more people come together, the more they find other ways that they are linked. That is, when a person first comes to a community he or she is drawn by the common interest of the community. As she attends again and again she will find other similarities with people in the community and create a deeper sense of bonding.
Other features of community include the notions of consent, creativity and cooperation. Years ago Robert Nisbit (1969) suggested that community thrives on self-help and equal consent. He felt that people do not come together merely to be together, but to do something together that cannot be done in isolation. Others (Sussman, 1959) identified community for its sense of interdependence. McKnight (1988) described community as a collective association driven toward a common goal.
Indeed, if we think about communities that we know, they all work toward some identified goal. From teaching people new skills, to saving souls, to addressing a common problem, or to launching a government, all these ventures capture the power of community, and then, through their behavior, create a culture. The most vibrant and successful of these communities are the ones that have built more social capital.
This basic approach to community and culture blends three key features. One is the fact that community is a network of people. Often these people may have great differences or even distances 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 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, 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.
Again, these three key features are:
- Diversity of membership
- Commonality of celebration
- Regularity of gathering
One of the most important facets of community is that it promotes a sense of social capital for the members who belong. Social capital refers to the connections and relationships that develop around community and the value these relationships hold for the members. Like physical capital (the tools used by communities) or human capital (the people power brought to a situation), “social capital” is the value brought on by the relationships.
Primer on Social Capital
L.J. Hanifan first introduced the idea of social capital in 1916. He defined it as: “those tangible substances that count for most in the daily lives of people: namely good will, fellowship, sympathy, and social intercourse among the individuals and families who make up a social unit…The individual is helpless socially, if left to himself… If he comes into contact with his neighbor, and they with other neighbors, there will be an accumulation of social capital, which may immediately satisfy his social needs and which may bear a social potentiality sufficient to the substantial improvement of living conditions in the whole community. The community as a whole will benefit by the cooperation of all its parts, while the individual will find in his associations the advantages of the help, the sympathy, and the fellowship of his neighbors.”
Robert Putnam (2000) defined the concept of social capital as: “referring to connections among individuals-social networks and the norms of reciprocity and trustworthiness that arise from them… [It] is closely related to…civic…virtue…A society of many virtuous but isolated individuals is not necessarily rich in social capital.”
Other sociologists suggest that social capital is enhanced by social currency. This idea is how social fodder links people together. For example, a popular person who is the life of the party might be regularly included in activities. To this extent he is strong in social capital. His jokes and storytelling, the items that make him popular in the gathering, are the social currency he exchanges.
Think about the many communities with which you are involved. People who might be different from you in many ways surround you — your family, your work team, your church, or your clubs or associations—but the commonality of the community tends to override the differences you have and create a strong norm for connections. The exchange is based in social currency. Further, these relationships become helpful to you for social reasons. Sociologists call this helpfulness “social reciprocity.”
Social capital is critical to a community because it:
- allows citizens to resolve collective problems more easily
- greases the wheels that allow communities to advance
- widens our awareness of the many ways we are linked
- lessens pugnaciousness, or the tendency to fight or be
- increases tolerance
- enhances psychological processes, and as a result, biological processes
This last point prompts Putnam (2000) to assert: “If you belong to no groups, but decide to join one, you cut your risk of dying over the next year in half!”
The fact that social capital keeps us safe, sane and secure cannot be understated. Most of us tend to think that institutions or organizations are key to safety. Places like hospitals or systems like law enforcement are thought to keep us safe, but the bold truth is that these systems have never really succeeded in keeping us safe or healthy. Rather, it is the opportunity for relationships that community offers us as well as the building of social capital. Simply stated, your circles of support and the reciprocity they create are the most important element in your health, happiness and safety. In fact, it has been suggested that social isolation, or the opposite of social capital, is responsible for as many deaths per year as is attributed to smoking.
Social Capital and Brain Injury
One of the clear realities of social capital and brain injury is that, although we have not had any clear empirical studies, most professionals and family members will tell you that relationships often end after an injury. Marriages, partnerships and other unions are often impacted by divorce or separation. Even the loss of children or the separation of children from the parent with a brain injury is, unfortunately, commonplace. These losses are not just with families, but the broader notions of friendships are equally at risk. Individuals and their families report the powerful loneliness and isolation that unfolds after an injury or disability.
When we consider social capital for people with disabilities, we must recognize this void. We know that people with disabilities still are separated from the greater community and mostly involved in special programs or services designed for him or her. In these realities, the major outlet for social capital is found only within the borders of the special programs. To this extent then, the relationships that constitute the social capital of many people with disabilities are other people with disabilities. The narrowness of this reality leaves a significant void.
Consider the notion of reciprocity. The more you become connected with your community, the more people begin to watch out for each other. If one day a regular member of your group doesn’t show up, a natural inclination would be to check up on them. This sense of group reciprocity is what leads to individual safety.
If the major social capital outlet for people with disabilities is other people with disabilities, then the reciprocity factor can become narrow. The more narrow the confines of reciprocity, the less impact it offers.
Putnam’s ideas of how social capital builds tolerance and lessens pugnaciousness also fit closely to the concept of cultural shifting. Anthropologists have found that for communities to get better, new and different ideas, people or products are necessary. Yet intolerant and angry communities are not as open or as ready to absorb new things. Consequently, cultural shifting is more difficult when communities remain narrow. Social capital helps build tolerance because the exposure to others challenges us to consider new things. This developing openness then has an effect on both intolerance and pugnaciousness. Simply put, if you become more exposed to difference, anger levels have a greater potential to go down and openness goes up.
This notion of social capital and the blending of similarity of interest with natural diversity of the members create unique phenomena for growth and development in both people and organizations. The drive to find, create or be more than we had before is magically transformed when it is blended with community. The reciprocity developed through social capital is helpful as well for either specific or general reasons.
There are many other issues that might impact social capital when associated with disability. Along with the narrowness of exposure and the tendency to congregate people who have disabilities, the notion of basic physical issues and architectural barriers often preclude participation.
Many brain injuries bring associated physical disabilities and this creates a variety of problems. First might be the attendant needs of the person. It is hard to expect a developing friendship to sustain some of the personal care needs. Indeed, any family caretaker will tell you how exhausting it is to take the most routine of trips into the community.
In some cases where individuals require wheelchairs or other mobility devices the simple elements of access might be mitigated by a curb or staircase. The sheer time demands that follow can also compromise a simple trip to a restaurant or theater.
Beyond all of these issues are stark behavioral manifestations that can also be a part of the brain injury reality. An outburst or narrow perspective that might be a new reality for the person who has a brain injury can wreak havoc on any community outing.
Clearly the challenges of engaging community and building relationships are difficult at best and any person reading these words who has been on a community outing with a person who has physical or behavioral manifestations related to brain injury can offer testimony. Still, we must try. In a simple equation, if treatment or clinical intervention can not change the person, then the target of action must shift to the community.
Actions for Consideration
So, knowing what we do about community and social capital, what directions, actions, and new approaches might we consider in Brain Injury Rehabilitation? To this end I want to suggest some key adjustments and shifts in perspective that are much more from a macro framework than from a micro or clinical approach that the field currently uses to achieve its goals.
First we must understand that social capital is a cornerstone issue in experiencing success in the broader aspects of community. More than therapy or programs, friends provide the fulcrum in the following areas:
- Most people get jobs in the community via their social capital. In fact, one recent study found that 71% of respondents to a vocational rehabilitation survey reported that they got their first job through a friend or family member. In fact, we all know that the best way to get a new or better job is through your social networks — your social capital. Certainly, even if you find a job on your own, you still need to list references — friends that will vouch for you. Social capital is closely tied to vocational success, not only in getting but in keeping jobs as well. Most people lose jobs not because they cannot do the work, but because they have difficulty fitting into the social fabric.
- Housing is another area where social capital is critical. Most people reading these words are probably living with someone they chose from their social network. In fact, social capital is an absolute for people — no one, unless he or she is in an institutional model, lives with someone he or she has not chosen. Yet, most people with disabilities find themselves in housing “programs” where their roommates are selected for them by an agency, program, or case manager.
- Finally, transportation, the key to our ability to get around the community, is closely aligned with social capital. Unless you are poor or institutionalized you probably ride in your own car, and if your car breaks down, you call a friend.
Clearly the more social capital you have the better your chances for getting a job, finding someone to live with, and getting a ride. Social capital is directly related to the key goals that people with disabilities report that they want from systems. But there is more.
If you push the outcomes discussion to a higher level, and think about the most important quality of life indicators known to people in general, we find that again, social capital is directly connected as well. When sociologists ask people to identify the most important things they want for the people they love the top three answers are health, happiness, and longevity. These three things — health, happiness, and longevity — are the highest measure of life success - for all people.
To this end, studies over the past 40 years show clearly that our health, happiness, and longevity are all enhanced by our social capital. Quite simply, the more relationships in your life, the healthier you are, the happier you are — and listen to this — the longer you live.
So the facts are clear: The very things that people with disabilities want from the human service system can and are enhanced by social capital. Yet the very notion of social capital has not at all been embraced or understood by these very systems that relate to people with disabilities. In fact, we don’t even know the extent of social isolation (except in anecdotal ways) that people with disabilities experience.
So what does all of this mean for us? Clearly, if we want to see people with disabilities be more successful in community outcomes, we must start with a shift in perspective and consider the power and potency of relationships. To this extent I recommend the following key actions:
- We have to shift from a micro perspective where we look at the dysfunction of disability and begin to understand and build competence in the macro notion of community. All people have things that make them engaging. Let’s stop trying to “fix” people and start trying to connect them to the community via their affinities.
- We need to define community and understand the key elements related to community building. Most of us in human services give lip service to community but have not really explored the elements, notions, and aspects associated with it. We must try to shed our “clinical bent” and think more anthropological.
- We must appreciate that all social capital starts with basic affinities and commonalities that people have. These affinities or cultural commonalities are the first step to community and relationships When people begin to embrace that which is common, they begin to dismiss the differences that can get in the way.
- We need to explore community and find the places of association where people share their affinities. All communities are rich in assets and opportunities. We all want to gather around the things we like, and these gatherings offer the start point for our social capital.
- We need to gain competence in how communities operate. This means understanding that all communities meet on a regular basis and have rituals, patterns, jargon, and a shared sense of history. These elements are key things that can play an instrumental role in someone becoming a “part of the mix.”
- Finally, and maybe most important, we must understand the cultural power of gatekeepers who create the segue for newcomers to enter existing communities. All of us have experienced gatekeepers — people in our life who have welcomed us and shown us the ropes when we entered a new community or group.
All of these actions demand a new framework for human services in and of themselves, and we should all become students of this information. Suffice it to say, the single most important action any program or service that purports to serve people with disabilities must do is to focus actions on having people build more social capital.
Over the years we have put much time, energy, and money into services for people with disabilities. Yet the data suggests that we have not significantly moved the needle on community outcomes for the very people we serve. We must be bold enough to face these failures and have enough strength to move our actions from current programs to a focus on social capital and the actions that will build social capital. Until we do this, we will continue to fail the very people we are chartered to serve.
- Erickson, W., & Lee, C. 2007 Disability Status Report: United States. Ithaca, NY: Cornell University Rehabilitation Research and Training Center on disability Demographics and Statistics, 1987.
- Covey, S: The 7 Habits of Highly Effective People. New York: Free Press, 1989.
- Hanifan, L. J. (1916) as reported in Putnam, R: Bowling Alone. New York: Simon and Schuster, 2000.
- McKnighjt, J: The Careless Society. New York: Basic Books, 1988.
- Nisbit, R: The Quest for Community. Delaware, ISI Publishing, 1969.
- Sussman, M: Community Structure and Analysis. New York: Crowell, 1959.
About the Author
Al Condeluci is a lifelong resident of the Pittsburgh area. He received his masters and doctorate degrees at the University of Pittsburgh. For the past 38 years Al has been associated with UCP of Pittsburgh where he currently serves as Chief Executive Officer. Al holds faculty appointments with the University of Pittsburgh’s School of Health and Rehabilitation Sciences and Robert Morris University’s Graduate School of Business. Al serves as a consultant, collaborator and lectures extensivelyaround the country often on material from his books, Interdependence (1991, 1995), Beyond Difference (1996), Cultural Shifting (2002), Advocacy for Change (2004) and Together is Better (2008). Al and his wife, Liz, have 3 children, Dante, Gianna and Santino. They live on the family “hill” in McKees Rocks PA with some 17 other Condeluci families. Al can be reached at 412-683-7100 x 2122, firstname.lastname@example.org, www. alcondeluci.com.
From Brain Injury Professional, the official publication of the North American Brain Injury Society, Vol. 8, Issue 3. Copyright 2011. Reprinted with permission of NABIS and HDI Publishers. For more information or to subscribe, visit: www.nabis.org.
Brain Injury Professional is the largest professional circulation publication on the subject of brain injury and is the official publication of the North American Brain Injury Society. Brain Injury Professional is published jointly by NABIS and HDI Publishers. Members of NABIS receive a subscription to BIP as a benefit of NABIS membership. Click here to learn more about membership in NABIS.