The most innovative projects in the country to support people with disabilities actually arise from common sense. All people need relationships with family, friends and extended community to be productive, engaged, and live safely in their homes and communities. How do we support this engagement in a service system that has incentivized payment for services and supports?
In 2009, the Georgia Council on Developmental Disabilities launched a statewide community organizing initiative called Real Communities, in order to support community-based projects that intentionally bring with and without disabilities together to create sustainable change. We wanted to learn more about the conditions that encourage all members of a community to contribute and meaningfully participate in civic and community life while enhancing their social connections through collaboration. By connecting people with disabilities to other members of their communities with common interests, we seek to build more avenues to natural supports and relationships outside of disability and other human services.
Our approach centers around people who live at the intersection of multiple marginalized identities, whether they have a disability or they are a person of color, LGBTQ, poor, an immigrant, a refugee, or have experienced homelessness or incarceration. We are finding ways to build solidarity and reciprocity across and among identity lines and become better allies with others working to overcome various injustices of social exclusion. Each community works on issues of importance to them and we have supported groups to work on issues as diverse as food justice, mass incarceration, the death penalty, family support for immigrant parents, neighborhood-based relationship building and connection projects, community based transportation in a rural area, and TimeBanks. To us, the “who” is more important than the “what.” We push groups to regularly ask themselves, “who is missing?” and “How do we reach out and engage more and more people?”
When I speak to others about my work, they are often baffled as to why a disability organization would invest significant personnel and financial resources in a community organizing initiative that by design does not primarily focus on disability. Over the past 25 years, there have been many policy changes that have significantly impacted the lives of people with disabilities and their families. Policies such as the Americans with Disabilities Act and legal decisions such as Olmstead, and the improvement and development of disability services intended to be integrated and person centered, have made undeniable changes to the lives of many people with disabilities. Despite these important advances and shifts in policies and services, the majority of people with disabilities are still overwhelmingly isolated and segregated from their non-disabled peers and neighbors, while navigating high levels of unemployment and poverty.
A few years ago, I attended a workshop presented by the Starfire Council. They introduced me to Jack Pealer’s 51 People. This was a simple research project done in the early 90s where Jack interviewed 51 people with disabilities and asked them one question: “Who is in your life?” Out of the 51 people with disabilities that he asked, people reported that they had an average of 7.76 family members, 68 other people with disabilities, 2.41 friends, 2.75 other citizens like church members or neighbors, and 24.39 human service professionals. Nine of the 51 people Jack interviewed reported they only had paid service professionals and other people with disabilities engaged in their lives. This confirms what I believe to be a huge unintended consequence of a long-term investment in building up specialized human services for people with disabilities without investing in or leveraging the many resources that exist in every community space. Social isolation is one of the biggest threats marginalized folks face. When we have friends and are seen for our gifts, talents and abilities, we are happier and healthier. This is especially true in terms of employment, for the relationships we have with people who acknowledge our gifts can lead us to secure and meaningful employment. Neighborhoods in which people know one another are consistently shown to be safer to live in. Human beings crave connections. When we isolate people, even with the best of intentions, we deny people access to the kinds of lives that we all need in order to thrive.
While I think there is great importance in continuing to make changes to policies and service system, we must find way to invest equal time and resources in building the capacity of communities, everyday people and natural supports. Services alone do not make a good life. No one I know wants to be surrounded only by people paid to be in their lives, no matter how much they may like and appreciate them. I deeply believe, and have seen, how communities rise to the occasion if given the opportunity to build reciprocal relationships. There’s a long journey ahead, but we can get there if we challenge ourselves to push, grow, take risks and think outside of the box.
Caitlin Childs was the Organizing Director for the Real Communities Initiative at the Georgia Council on Developmental Disabilities from 2009-2016. She lives in Atlanta, GA where she is currently working on a major writing project, reading lots of books and continuing her work for social justice as a consultant and organizer. You can learn more about her by visiting www.caitlinpetrakischilds.com