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by Bill Gaventa and Erik W. Carter
Being or becoming “well” is not necessarily about minimizing sickness or eliminating disease. Nor should it be conflated with the absence or healing of a disability, despite prevailing stereotypes out of both the medical model and some religious traditions. Theologians and clergy these days often make a distinction between “healing” and “cure,” noting that healing can occur even if a particular condition is not cured. Wellness, like healing, involves moving toward a healthier physical, mental, and spiritual way of living. Wellness is a journey. To be well and doing really well on that journey is, one might say, to flourish with or in spite of one’s limitations.
In her wonderful book, Flourish: People with Disabilities Living Lives of Passion, Karin Meiberg Schwier (2012) shares the life stories of a number of people with intellectual and developmental disabilities (IDD) who are seen as flourishing, on their own and in community with others. She names reflections on how to help flourishing happen by paying attention to the “spice of life,” “journeys of discovery,” “identifying passions,” “building on interests,” “picking up the pieces,” and “promoting passions.” Passion, belonging, and purpose emerge as key themes throughout these stories.
Flourishing is partly about knowing all of one’s options and having sufficient support to pursue those that matter most to you. But it also entails embracing all of what we have – our strengths, needs, limits, and gifts alike – and then living whole lives that do not rest on being perfect. Such lives are full of “spirit.” They are characterized by a positive sense of one’s identity; by doing things that are meaningful and enriching; by enjoying strong connections with people, places, and whatever is sacred or holy in one’s life; by having a sense of purpose; and by making a difference in the lives of others. These are aspects of what many call “spirituality.” It can be expressed through a community of faith, but it does not have to be. Spirituality is not so much a set of beliefs as it is a relationship – with oneself, others, God, tradition, and future. In the quality of life model that pays the most substantial attention to the place and prominence of spirituality, quality of life is about being, becoming, and belonging (Quality of Life Research Unit, n.d.).
In the past three decades, research at the intersection of spirituality and wellness has burgeoned. Hundreds of studies (Koenig, King & Carson, 2012) affirm what so many people can speak to first hand – spirituality and various indicators of flourishing often accompany one another. This connection is also evident among people with IDD. In their interviews with young people with disabilities, Liu and colleagues (2014) learned that thriving included the friendships young people forged within their congregations, the sense of belonging that came from membership in a faith community, and the opportunities they had to worship and serve alongside others. Biggs and Carter (in press) reported a similar pattern in their study involving almost 400 young people with disabilities – faith and quality of life were strongly correlated with one another. The importance of spiritual expression is not limited to just a handful of individuals. In a national survey, nearly 90% of adults with significant disabilities considered their faith to be an important aspect of their lives (NOD, 2004) and almost half of adults with IDD in another national study attended a place of worship at least once in the past month (Carter et al., in press). Supporting the spiritual lives of people with IDD appears to be an important element of enabling people to thrive.
How, then, might we tap the spiritual dimensions of people’s lives in their journey toward wellness? It starts first with listening to and supporting well the wishes, dreams, needs, and preferences of each individual. One can do that through one or more spiritual assessment processes, some of which have been developed specifically for and with people with IDD (see the Web site of the Collaborative on Faith and Disability at http://faithanddisability.org/resources/webinars-and-online-trainings). If we learn that a spiritual community, tradition, and religious identity is important to someone, then supporting these things well is simply a matter of good person-centered practices (see position statements by TASH, the Arc, and the American Association on Intellectual and Developmental Disabilities). And the forms these supports take might vary widely – from tapping into the network of people within their congregation to help find just the right job (Gaventa, Allen, Kleinert & Carter, 2014), to enabling them to serve others in their community, to supporting their time with friends with whom they share the deepest of connections, to providing space for them to explore or express things that matter most.
The efforts of congregations are also essential to ensuring people with IDD who want to be part of a faith community actually receive the invitations, encouragement, and supports needed to participate in valued ways. However, many congregation members feel reluctant or ill-prepared to extend hospitality in this direction – they are unsure what to say, unsure what to offer, and unsure where to begin. And uncertainty almost always leads to avoidance. Here is where the growing number of new resources can be so helpful for congregations that want to be welcoming, but wonder where to start (see http://www.faithanddisability.org for a searchable database of resources). Professionals steeped in the world of disability can also be effective advocates and guides for congregations.Spirituality and flourishing can be intimately linked. Supporting people well on their journey toward both is an important aspect of providing the very best services and supports to people with intellectual and developmental disabilities.
Biggs, E. E., & Carter, E. W. (in press). Quality of life for transition-age youth with autism or intellectual disability. Journal of Autism and Developmental Disorders.
Carter, E. W., Kleinert, H. L., LoBianco, T. F., Sheppard-Jones, K. A., Butler, L. N., & Tyree, M. S. (in press). Congregational participation of a national sample of adults with intellectual and developmental disabilities. Intellectual and Developmental Disabilities.
Gaventa, W., Allen, W., Kleinert, H., & Carter, E. W. (2014). Putting faith to work: The call and opportunity for faith communities to transform the lives of people with disabilities and their communities. Nashville, TN: Vanderbilt Kennedy Center.
Koenig, H. G., King, D. E., & Carson, V. B. (2012). Handbook of religion and health (2nd ed.). New York, NY: Oxford University Press.
Liu, E. X., Carter, E. W., Boehm, T. L., Annandale, N., & Taylor, C. (2014). In their own words: The place of faith in the lives of young people with intellectual disability and autism. Intellectual and Developmental Disabilities, 52, 388-404.
Meiberg-Schwier, K. (2012). Flourish: People with disabilities living lives of passion. Saskatoon, Saskatchewan, Canada: Copestone.
National Organization on Disability (NOD). (2004). 2004 NOD/Harris survey of Americans with disabilities. Washington, DC: Author.
Quality of Life Research Unit. (n.d.). The quality of life model. Toronto, Ontario, Canada: Author. Retrieved from http://sites.utoronto.ca/qol/qol_model.htm
Bill Gaventa is Director of the National Collaborative on Faith and Disability. He may be reached at email@example.com or 732/718-5875. Erik Carter is Professor of Special Education, Vanderbilt University, Nashville, Tennessee. He may be reached at firstname.lastname@example.org.
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Citation: Traci, M., Hsieh, K., Anderson, L., & Gaylord, V. (Eds.). (Winter 2016). Impact: Feature issue on supporting wellness for adults with intellectual and developmental disabilities, 29(1). [Minneapolis: University of Minnesota, Institute on Community Integration and Research and Training Center on Community Living]. Retrieved from https://ici.umn.edu/products/impact/291/
The PDF version of this Impact, with photos and graphics, is also online at http://ici.umn.edu/products/impact/291/291.pdf.
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