The Vision for Inclusion
As immediate past president of the board of directors, I would like to welcome you to the inaugural edition of Inclusion, a new ejournal of the American Association on Intellectual and Developmental Disabilities (AAIDD), and to share with you my vision for this exciting new venture. Inclusion is a peer-reviewed journal that provides a forum for the presentation and discussion of evidence- and research-based interventions and strategies that promote the full inclusion of people with intellectual and developmental disabilities in society. Inclusion will address the needs of administrators, clinicians, policy makers, and other professionals dedicated to improving the lives of people with intellectual and related developmental disabilities. In this introductory article, I'd like to reiterate some of the points I made in my presidential address about the meaning of inclusion, my vision for an inclusive society, steps to take to realize that vision, and benchmarks and outcomes of inclusion. It was the discussions generated by the focus on AAIDD's role in promoting inclusion during my presidential year that led to the idea for this ejournal, and I would like to share with you some of my thoughts on what we can, together, achieve through Inclusion.
What Does Inclusion Mean?
In the words of Shafik Asante, a former leader of New African Voices in Philadelphia, Pennsylvania,
Inclusion entails recognition of our universal oneness and interdependence. Inclusion is recognizing that we are one even though we are not the same. Fighting for inclusion involves assuring that support systems are in place to ease the person's entry in to social and civic life. Providing and maintaining support systems are civic responsibilities, not a favor to the less fortunate. We were all born in. Society will immediately improve at the point we honor this truth!! (Asante, 2002, p. 1)
So inclusion really means accepting, embracing, and celebrating the gifts, talents, and differences in all of us as a means of shaping communities that are welcoming places for all people.
Conceptually, inclusion has evolved from an aspiration linked to place to one tied to participation, choice, and relationships. Probably the earliest expression of the idea was advanced by Bengt Nirje (1969/1994). The notion was further elaborated on in 1972 by Wolf Wolfensberger in a discussion of the normalization principle. He used the concept of normalization or social role valorization to criticize, among other things, infantilizing decorations and language and inadequate day activities.
As the concept was refined and honed, it spawned more encompassing aspirations, such as community integration and community membership (Bradley, Ashbaugh, & Blaney, 1994). The notion of community integration was directly related to the movement of people out of institutions and implied a reentry by people who had been excluded. Likewise, community membership implied joining a fellowship from which one had been alienated.
Conceptions that stressed integration and community-based services also influenced public policy, which, in turn, influenced practice. Phrases such as “least restrictive environment” and “mainstreaming” emerged as part of the landmark right-to-education legislation. Class action lawsuits brought during the 1970s also echoed these notions, including the Halderman v. Pennhurst (1977) litigation, which found a right to habilitation in the community. These powerful legal ideals had a transformative impact on the delivery of educational services as well as residential and day services for people with intellectual and developmental disabilities. As fewer and fewer children and adults left their communities to receive services and as institutional populations began a precipitous decline, the ideals that emerged to challenge the system had less to do with opposition to a dominant norm (e.g., exclusion, extrusion, institutionalization, alienation, etc.) and more to do with affirmative notions of equality and the accommodation of differences. No longer was the system exhorted to provide better surroundings and opportunities than those available in the institutions, but it was to facilitate supports that would allow people with intellectual and developmental disabilities to lead lives available to all other citizens. In other words, to invite in people who had been traditionally locked out of our communities. The basis for judgment is now whether people with disabilities are able to enjoy commonly valued societal outcomes and opportunities, such as relationships, friendships, home ownership, real jobs, spiritual fulfillment, and the exercise of personal choice. These assumptions about what constitutes satisfying life have come to be known as “inclusion” (Bradley, 2000).
The concept of inclusion is relevant to the whole of society in that all people are unique with unique capacities. Every person can learn and grow. Every person has gifts to share and desires opportunities to make contributions. These assumptions apply to every person, no matter who he or she is. With this as a backdrop, the measure of inclusion for people with intellectual and developmental disabilities and their families is no different than what we would use for ourselves and our families.
Inclusion is about more than just placing people in neighborhoods, schools, family homes, places of worship, regular recreation activities, and so forth. It is about supporting people to become connected and to be a part of the place or activity.
What Would an Inclusive Community Look Like?
During its 2010 conference, the Tucson Commission on Disability Issues offered a vision of an inclusive community:
An inclusive community for people with disabilities is one that is open and accessible for all. In this community, each member is able to take an active part and is safe and empowered. In an inclusive community, citizens' voices are heard and their contributions acknowledged and valued by the community. In an inclusive community, each person is respected as a citizen who can fully exercise his or her rights and responsibilities. In an inclusive community, each member brings unique strengths, resources, abilities and capabilities.
Knoll and Peterson offered a slightly different vision of an inclusive community:
In inclusive communities, we move from focusing on services provided exclusively by agencies, to support for involvement in typical community activities, based on the needs and choices of the individual. Disability service agencies work in partnership with community services, support networks (friends, family, peers), and the person with a disability. The primary role is to help connect and support the individual in school, home, community, and work. (Knoll & Peterson, 1992, p. 5)
A vision of an inclusive community points in a different direction than would a vision of human services that meet all needs within specific buildings and boundaries. The search for the excellent self-contained service program leaves people wandering in a blind alley while the search for ways to build a more inclusive community directs attention to the network of streets and roads that can lead to opportunities for better lives for every person (McKnight, 1987).
In inclusive communities, everyone has an equal opportunity to live, learn, work, play, and grow on their own terms and in ways that are meaningful to them. In inclusive communities, all people are recognized and celebrated for their strength, beauty, courage, and inherent gifts. In inclusive communities, people belong. For children, this means being a part of a family and living in relationships with adults who nurture them, attending regular schools and being a part of classrooms with children without disabilities and participating in typical school activities, and engaging in community recreation activities and spiritual activities that include children without disabilities. For adults, inclusion means the opportunity to choose where one lives, works, goes for leisure activities, and worships. Those opportunities should include the same range of options available to every other person in society.
What Will It Take to Realize This Vision?
There are a number of steps necessary if we are to reach this vision:
There must be a shift in focus in planning supports for people with disabilities from deficiencies and limitations to a focus on strengths and capacities. All too often, what I have seen is that people with disabilities are defined and described in terms of deficits rather than capabilities. People need opportunities in community life to explore and share their gifts, capacities, and strengths and to pursue lifestyle choices and be provided with adequate supports to do so. Person-centered planning is a primary framework for ensuring that people are included in their communities and in social networks in a manner consistent with their preferences.
People who know and love the person best must be involved in supporting people to discover their desirable future and the paths to take to get there. We call that a “circle of friends.” Mount, O'Brien, and O'Brien (2002) help us to understand that the circle of friends is a group of people who care about change happening for the focus person and choose to give their time and resources to working for change.
The role of direct support professionals needs to be redefined from one of skills developer to one of community connecter. Community connectors introduce people to community life, support people in becoming involved in community and civic associations—both formal and informal—of their choosing, and support people in developing relationships with a growing number of others in their community. According to a recent report by DisAbility Services within the Victoria Department of Human Services in Australia (2002), one important marker of community inclusion is the range and number of friends and social contacts a person has. There is a growing body of evidence that suggests people with robust social networks lead healthier and happier lives. This is the case for all members of the community. Focusing on friendship networks for people with disabilities represents a paradigm shift from skills development to social inclusion.
Organizations providing supports to people with intellectual and developmental disabilities need to engage in a rigorous examination of their mission and purpose and recognize that they serve a role in connecting people and their communities. All too often, organizations become a substitute or artificial community, containing supports within their buildings and boundaries, and people live entirely in a world of paid service. Instead, organizations need to advocate for an array of supports throughout the community and figure out ways for the people they support to have a growing number and variety of relationships with others in the community who do not have disabilities and are not paid to be in their lives. Likewise, organizations should form partnerships with other community organizations to strengthen and enrich the fabric of community life for all of their members. Organizations also need to collect and analyze data on the quality of community life in their local communities and partner with others in the community to take action on issues affecting community life.
Research should be conducted to assist the field to understand the ways in which people with intellectual and developmental disabilities can be supported effectively.
The values of inclusion should be present in the public policy, in the missions of provider agencies, and in the expectations set by quality assurance and enhancement systems.
Both in our professional and personal lives, we must promote and practice the values of acceptance and hospitality for all people. If we don't, how can we expect it of others? Hospitality is not a heroic virtue, but a commonplace part of everyday life. We must all be active participants in making our communities welcoming places for all.
What Are the Benchmarks of Inclusion?
Affordable and accessible housing options in the community for all citizens
Employment available in the community for people who desire it based on their skills and preferences in regard to earning a living wage, acquiring benefits, advancing their careers, or planning for retirement
All students participating in regular schools with access to a general education curriculum in inclusive settings with peers of the same age
Recreation activities in the community available for all citizens
Faith communities that welcome and embrace all of their members
What Are the Outcomes of Inclusion?
Inclusion is not a new type of program, but it is a value that we should espouse. By embodying this value in our services and supports, we can hope for the following:
Acceptance of all people and their gifts
Full citizenship for all
Richer and deeper relationships
Greater cooperation and collaboration among all people
Greater and more diverse community options for people
A better world for all people
The whole is greater than the sum of its parts. This well-known adage applies to communities that embrace the diverse gifts and talents of all their citizens, including those with disabilities. With proper nurturing and care, an inclusive community flourishes and becomes more vibrant, making it a more desirable place for all to live, work, and play. Margaret Mead defines an ideal human culture as one in which there is a place for every human gift. In an ideal culture, people know each other well enough to acknowledge and support one other in the development of their individual gifts. That's community.