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Civic Engagement and People with Disabilities: A CIVIC ENGAGEMENT AND PEOPLE WITH DISABILITIES A Way Forward through Cross-Movement Building ˜urie Insiue or Disabili Polic Sillerman Cener or he dancemen o Philanhrop Civic engagement must be an essential element of democratic practice if government is ever to be “of the people, by the people, for the people.” Civic Engagement & People with Disabilities | 2 Contents Acknowledgments............................................... 4 Executive Summary ............................................ 5 Findings: Overview .............................................. 16 Introduction ........................................................... 18 I: Our Questions and Methods ......................... 21 II: Findings ............................................................... 21 III: Recommendations ......................................... 33 IV: Conclusion ....................................................... 36 Civic Engagement & People with Disabilities | 3 Acknowledgments Credits About the Sillerman Center Authors Sandy Ho, Susan Eaton, and Monika Mitra for the Advancement of Philanthropy Designer Finn Gardiner The Sillerman Center draws upon scholarship and This report would not be possible without our survey practitioner experience to inform philanthropic respondents, interview participants from disability practice and giving. Through publications, webinars, rights communities and civic engagement sectors, and public events, courses and fellowships, we Twitter chat contributors. We would like to extend engage emerging and established members of the our gratitude and appreciation to the following people philanthropic community across the United States. for their support and leadership: Dr. Monika Mitra, The Center was established in 2008 by a generous gift director of Lurie Institute for Disability Policy; Finn from Laura and Robert Sillerman ’69. The Sillerman Gardiner, communications specialist of Lurie Institute Center’s work includes publications on grantmaking for Disability Policy; Amy AbuShanab, assistant director for social justice, seminars and lectures on social of Lurie Institute for Disability Policy; Alice Wong, justice grantmaking, partnerships with foundations founder and director of Disability Visibility Project; Dr. and community leaders, support for graduate students Susan Eaton, director of the Sillerman Center for the interested in philanthropic careers, and technical Advancement of Philanthropy; Claribel Vidal, program assistance for youth philanthropy organizations in associate for the Civic Engagement and Government Massachusetts. Program at the Ford Foundation and Dr. Sanjiv Rao, director of the Civic Engagement and Government How to Cite This Report Program at the Ford Foundation. Sandy Ho, Susan Eaton, and Monika Mitra, “Civic About the Lurie Institute for Engagement and People with Disabilities: A Way Disability Policy Forward through Cross-Movement Building.” Waltham, MA: The Lurie Institute for Disability Policy, Brandeis The Lurie Institute for Disability Policy conducts University / New York, NY: Ford Foundation Civic multidisciplinary research on the needs, experiences, Engagement and Government Program, April 2020 and policy priorities of people with disabilities. Our work covers a wide range of topics, including the Funding Statement experiences of parents with disabilities; policies addressing long-term services and supports for people The authors received fnancial support from the Ford with disabilities; and health and healthcare outcomes. Foundation’s Civic Engagement and Government Moreover, the Lurie Institute houses two major Program. federally funded programs of research: the National Research Center for Parents with Disabilities and the Contact Us Community Living Policy Center. These programs Lurie Institute for Disability Policy: focus on salient issues afecting people with disabilities lurie.brandeis.edu | [email protected] and the communities around them to ensure the full integration of people with disabilities into society at Sillerman Center for the Advancement of Philanthropy: large. The Lurie Institute was created by a generous gift heller.brandeis.edu/sillerman | sillermancenter@ from the Nancy Lurie Marks Family Foundation brandeis.edu in 2007. Civic Engagement & People with Disabilities | 4 Executive Summary Civic engagement must be an essential element of from participation in our shared democracy. The lack democratic practice if government is ever to be “of of a stable foundation for disabled people to access the people, by the people, for the people.” But for meaningful civic engagement has meant disabled people with disabilities, this foundational practice people themselves hold disproportionately little power is replete with systemic barriers and challenges. with respect to their social, economic and political People of color with disabilities, compared to their progress. white disabled counterparts, experience even more limited access to existing pathways of participation Both historic and recent social movements teach us and meaningful infuence over government and civic that civic engagement practices must center people life. This is not surprising information, if we note that closest to the challenges those movements are trying research in education, health, and employment, has to address. But even the most progressive of eforts, long shown that people of color have limited access including contemporary civic engagement work, to opportunities and services. This social exclusion of still do not include people with disabilities as people with disabilities and people of color is directly active members and leaders. To disrupt the cycle of tied to underrepresentation in civic engagement.1 social, health, and economic disparities that people Consequently, even the public discourse and civic with disabilities experience, sustained representation engagement eforts that most directly afect the lives and participation of people with disabilities is of people with disabilities tend to center and privilege necessary. This must include and be led by disabled voices of white, nondisabled people. This directly people inside and outside of traditional democratic contributes to a systemic imbalance of power and processes. A truly democratic system that provides representation across all levels of US government and equitable opportunities for civic participation for civic life. people with disabilities, including the marginalized disabled communities requires relationship building Twenty-six percent and allyship across movements, and across the of the American public sector (civic, philanthropic, government, adult population etc.). Philanthropy holds the potential to catalyze has some type conversations around these necessary changes and of disability.2 ˜°% support eforts led by people with disabilities to However, even challenge ableist norms around power, representation, eforts designed of adults in the and participation and increase the infuence people to engage people US have a disability with disabilities have over systems, structures, policies with disabilities in and issues. civic participation and leadership This report presents a national overview of the barriers are not typically informed by the lived experiences to civic engagement that disabled people experience. of disabled people. As a result, members of the Drawing on our fndings from surveys, a Twitter disability community experience civic engagement as chat, and interviews, we ofer recommendations for fragmented, refective of ableist social attitudes, and the philanthropic sector and for civic engagement full of barriers to participation. This marginalization organizations aspiring to create a more inclusive and of disability community voices in civic life has led responsive democracy to build civic power among generations of the disability community to be excluded people with disabilities. Civic power in this report 1 Robert Wood Johnson Foundation, “Culture of Health Sentinel Community Insights: Health Equity” 2 Centers for Disease Control and Prevention, Disability Impacts All of Us Civic Engagement & People with Disabilities | 5 Civic engagement is an essential element of democratic practice, but for people with disabilities, this foundational practice is replete with barriers and challenges. Civic Engagement & People with Disabilities | 6 is conceptualized as opportunities for people with These questions were shaped by members of the disabilities to amplify, mobilize, and elevate their voices disability community and by our own assessments and infuence within democracy. of disability-related knowledge gaps, both in the philanthropic sector and among civic engagement This report centers the expertise, insights and lived practitioners. We sought data and insights from a) experiences of people with disabilities, including leaders disability rights leaders b) disabled people who are from various disability communities. Our fndings involved with the disability community in various reafrm that no disability rights issue exists outside capacities, and c) representatives from more broadly the sphere of civic engagement and no meaningful civic focused civic engagement organizations. engagement strategy can emerge without attention to disability rights. We gathered information through interviews, online engagement and an online survey. We conducted Supported by the Ford Foundation’s Civic Engagement 18 interviews across both Ford Foundation’s civic and Government (CEG) program, this report is a engagement grantees
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