Developmental Disabilities Leadership Forum: Leadership Perspectives in Developmental Disability: An on-line Journal for Consumers, Professionals, Family and Friends
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Volume 1 , Issue 3 Date: Spring, 2001 Topic: Community Membership

Community Membership Across the Life Span

by The 2001 LEND Fellows

Have you ever wondered why solitary confinement is considered one of the worst forms of punishment for human beings to endure? How many of you have sung or heard sung the words, “No man is an island. No man stands alone. Each man has his job to do?” The original words “No man is an island entire of itself? Every man is a piece of the continent, a part of the main” were written as prose by John Donne in 1624. Almost 400 years later, membership or a sense of belonging continues to be vital if the human spirit is to thrive. If the whole of a community is to be greater than the sum of its parts, then the contribution of ALL of its members is essential.

Many of us take for granted our part in our communities. However, there are people today who are realizing that the pace and pressures of modern society are eroding their abilities to participate in their communities. Their growing sense of being disconnected has sent them in search of community. In a recent Boston Globe article, the editor of the magazine “Communities”, Diana Leafe Christian, described the many different forms of shared living communities that are being planned and built across the country (Dana Snyder-Grant. ‘Big Idea: The search for community’. Boston Globe March 4, 2001.). The reason these projects have developed is the feeling that, “It takes a village to make a worthwhile life.”

This year’s LEND Fellows at the Eunice Kennedy Shriver Center share this same belief in the importance of being a part of a community. As the ten of us worked together to create a theme for the summer edition of the on-line journal, we began to recognize that each of us shares the conviction that the communities to which we belong (pre-school, school, church, work, sports & recreation and retirement) help us define our lives. We began to realize that these communities are essential supports throughout our lives, for they encourage our sense of personal growth and self-determination. Using a new lens, we began to look more closely at these communities to better understand what “real community membership” looks like for all persons, including persons with developmental disabilities.

Through discussion, we came to the consensus that Community Membership across the Life Span would address the ideas and challenges that arise throughout life’s continuum for persons with developmental disabilities. However, developing a clearer understanding of the meaning of “community membership” would be essential to the conversation. The literature review became the catalyst for vibrant discussions between the LEND Fellows and their faculty advisors. Published stories about community membership illustrated that there are varied viewpoints on this critical issue. Presenting them openly and honestly became our difficult task. Using leadership as our lens, we chose to identify partnerships, programs or projects that would challenge others to think creatively and consider what it really means to have people with developmental disabilities fully participate in community life.

It became essential for us to connect with programs and the leadership that represented them at the local and national level, to present the diversity in programming and philosophy in the field of community membership. Each contact was asked to address the issues of what programs/approaches were working, which were not, and why?

As the responses began to arrive, it was exciting to learn about the inspiring work being done in the field of community membership and the dedicated people moving this issue and their great projects forward. For example, Judith Snow and others write about her support circles which illustrate the powerful impact that an individual and her immediate community (her “Joshua Circle”) can have on a challenging life situation (Judith Snow and Marsha Forest. Support Circles: Building a vision.). The international “Best Buddies” program Kathleen Burns, (Best Buddies reference to article in this issue of the DD On-line Journal, June 2001) helps facilitate community membership by connecting young people who have disabilities with peers in their communities to inspire the natural development of friendships and other connections within the community.

There were many common threads woven through these conversations. These became key words that highlighted the energy, passion and philosophy of the success stories. We discovered that community membership evolves when the following components are present:
  • Vision: The ability to envision at a global level, the ideal and common goal of a diverse and inclusive community.
  • Structure: Institutions are often seen as large, undesirable or impersonal organizations however, most communities need a framework, a structure that draws people together and enables them to remain together (e.g. schools, places of employment or worship, community groups, volunteer organizations).
  • Common Experience: Shared interests or schedules that bring people into contact with one another in a natural way.
  • Awareness: Sensitivity to people’s needs and the opportunities for community membership.
  • Individualization: Recognition that each person has unique interests and ways to relate to the community.
  • Expectation-free Relationships: The absence of pre-conceived notions of how one “should” behave or what one “should” look like to be a community member.
  • Social Relationships: The interpersonal interactions that begin to draw people together to form the foundations of community.
  • Facilitation: The process of people acting on behalf of others to encourage and enable relationship building among persons or members within a community.
  • Connections: The real and lasting bonds that build community.
  • Empowerment: Education and the provision of resources for persons with or without disabilities to develop leadership and self-advocacy skills.

In addition to identifying positive programs and accomplishments, a pattern of challenges emerged that could be barriers for people with developmental disabilities seeking community membership. These underlying themes or potential barriers included attitudes, the need for thoughtful planning, funding issues, staff training, role modeling and current public policy.

Attitudes are tied to an individual’s beliefs and impact his/her willingness to change. For most of us, change can be difficult to accept, especially when it involves expanding participation to members who are different from our understanding of a community member. Thoughtful planning, the ability to look beyond the initial vision to see how involving members with disabilities might affect individual membership or the community over time is often overlooked. Great ideas or programs implemented too quickly, without the necessary supports, have lead to the undesired outcome of resistance to future plans involving persons with disabilities.

President Roosevelt kept his disability hidden from the public, fearing that it would undermine people’s perception of him as a leader. This highlights the fact that historically there have been very few role models for persons with disabilities in the community, a situation that remains today. The opportunity for movement into positions that allow for power and recognition is also limited. As a result, the community or the person with a disability may not insist on full participation.

Funding and financial constraints are inherent in all new program ventures however, the cost of staffing, equipment and environmental modifications are often underestimated and ultimately may limit participation for persons with developmental disabilities. The needs of one person may eclipse the needs of others if adequate funding is not available.

Staff recruitment and training is also affected by funding. Currently local, state and federal programs provide funding at a rate that allows for only minimum wages and benefits to be paid to staff persons who work with individuals with disabilities. This makes hiring, training and retaining qualified workers a significant problem.

Public policy is an area in which some progress has been made, but not enough. The Americans with Disabilities Act (ADA) is the first public policy that demanded all persons, including those with disabilities, be allowed equal access to the community. While the ADA has been a bright spot, it will take many years to fulfill its promise. The key to acceptance is held in community education. Without an understanding of differences, barriers cannot be brought down.

Public policy does not change without significant work. In Massachusetts, for example, advocates are currently working very hard to convince State Legislators to increase the value of a Direct Care Salary Increase Reserve that is intended to address the chronic low salaries and high turn-over rates for direct care workers in the human services delivery system. This fund has lost almost 50% of its value in the last two budgetary processes, resulting in only very modest salary increases (pennies an hour) for roughly 27,000 direct care workers in Massachusetts. (People First: What Massachusetts Does for People with Disabilities. An Analysis of the Governor's House 1 Budget Recommendations for Fiscal Year 2002. Report produced by Massachusetts Human Services Coalition for The Massachusetts Developmental Disabilities Council. March 2001) Having the ability to establish a regular relationship (over time) with direct care workers would help many people who have disabilities to make important and meaningful connections to their own communities.

As a group, we LEND Fellows, followed a fascinating process to begin to arrive at a fuller understanding of the importance of community membership for all persons, as well as what “real community membership” entails. It does not mean just a “presence in the community”. It means a presence that includes a set of human relationships in one’s community that are meaningful to all who are involved.

Although the time of publication has arrived, our process is not yet complete. As editors of this journal issue, the Fellows hope to inspire you to think creatively about the prospects for community membership for people with disabilities. We hope these ideas and personal stories challenge you to action in your own communities. Action has many forms, participating in a church outreach program, making a new friend, contacting your local community center or legislator to advocate for programs that encourage community membership. All are ways to serve as a role model in the field of community membership. In the words of Eunice Kennedy Shriver, “The table has been set. It is your job to put food on it”.

2001 LEND FellowsThe 2001 LEND Fellows are: Alexandra Bonardi, Kathleen Boyd, Priscilla Hayden-Sloane, Cecelia Keller, Debora Lynn, Deirdra Murphy, Elizabeth Salvucci, Ann Smith, Anita Sutherland , Linda Tirella. Click here to read more about their role as guest editors

The Shriver Center

The Forum is a project of the UCE at the Shriver Center, a division of the University of Massachusetts Medical School. Technical Support is provided by New England INDEX. This is an Official Page/Publication of the University of Massachusetts Medical School

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