Disability "Balkanization:” Thinking About Communities

On October 15, Courage Center hosted a conference on “The’ Balkanization’ of Disability: Examining the Disparities” for those interested in improving disability services. Several groups from the academic and service communities came together for this conference, including the Center on Aging, Minnesota Area Geriatric Education Center (MAGEC), Hubert H. Humphrey Institute of Public Affairs, Center for Bioethics, Institute for Community Integration, and Disability Services.

The conference gave me chance to think about issues in the disability community. As I now see it, “Balkanization,” means the dividing of the disability community into smaller, often competitive, groups. Historically, the disability community has organized into smaller groups of individuals who can relate to each other based upon similar circumstances (e.g. geography, type of disability, and/or age). Each of us may be a member of several groups. For example, as a 30-something individual experiencing effects of spinal muscular atrophy, I might participate in a local organization for young adults with spinal muscular atrophy. I may also be a member of a statewide organization, as well as a broader national group addressing all ages, such as the Muscular Dystrophy Association. On the other hand, because I experience depression, I may additionally be a member of a mental illness group.

Each of these groups may be advocating for a particular cause, such as transportation, housing, support services, economic assistance, or health care coverage. For example, the local young adult spinal muscular atrophy group may be working to ensure additional accessible and affordable housing. At the same time, the mental illness group may be working to expand mental health insurance coverage. Each cause requires resources (i.e. funding) from individuals, private organizations, community groups, or government. Unfortunately, because resources are limited, the groups often end up competing for those resources. Who decides how to divide resources toward each group’s project? In this case, because each would likely be a statewide initiative, they may be funded by the state government. The division of funds between health care and housing would be decided by the state’s budgetary process. Here, the groups would not literally be fighting over those resources. When the state is developing its budget and deciding how to divide resources, each group may approach their legislators or budget committee to try to get more resources for their programs. So, directly or indirectly, they do compete.

Generally, each group has specific sets of needs, works to develop specific sets of solutions, and requires resources. More groups may mean a greater variety of needs, solutions, and more resources required. They can become like a pack of 20 hungary wolves fighting over two pounds of hamburger a farmer threw out! The more aggressive wolves eat a little, the less aggressive may starve. Or, to use another cliché, the squeaky wheel gets the grease.

In the disability community, countless groups exist, resources are limited, and competition naturally results; hence, “Balkanization.” Furthermore, a fragmented community results in fragmented programs; groups with particular needs have advocated for specific solutions. The question addressed during the conference was: “is ‘Balkanization’ good or bad?” Obviously, a well-organized group with a large active membership can be more influential and will be more likely to satisfy its needs; such groups benefit. Other groups may be able to modify the solution to meet their needs; and may benefit as well. But what about groups that do not have the resources or membership to become well-organized and influential? What if they cannot adapt to larger groups’ solutions? Typically, they lose out.

What if several groups had similar needs and worked together, bargaining, negotiating, giving and taking, toward common solutions? For example, what if the Paralyzed Veterans of America, Muscular Dystrophy Association, National Multiple Sclerosis Society, United Cerebral Palsy, and National Spinal Cord Injury Association worked together to advocate for more affordable, accessible housing? They might be able to pool enough resources and participants to become more organized and influential, therefore more effectively satisfying their overall needs. True, the specific housing needs may vary from group to group, just as they do among individuals. No matter who develops the solution, individualized modification may be required. Nevertheless, several groups working together more efficiently satisfies the needs of each individual group and contributes to the greater good of society. “Balkanization,” on the other hand, discourages teamwork and therefore is undesirable because it does not promote societal efficiency.

Maybe a better approach is to identify a particular need (e.g., affordable and accessible housing), identify individuals and organizations impacted by the need (e.g., consumers, disability community groups, and representatives plus financiers, developers, and property managers), and work as a team to develop, implement, and maintain an overall solution. Each sub-group could devise and suggest alterations to meet their more specific needs.

No matter how beneficial teamwork could be, teams may be difficult to develop and maintain. Teamwork can be scary for individual groups. Would they have been better off working alone? More people involved may result in a slower decision-making process, longer development process, and more difficult maintenance. Some groups may lose power, influence, and recognition by working as part of a larger group; they may not feel they are reaping as many benefits. They may feel threatened by teamwork.

The answers are not easy or straightforward. Such topics have been discussed and debated within sociological, political, and economic circles for centuries. Political realities mean we must continue to give these issues our thoughts.