CIVIC ENGAGEMENT AND PEOPLE WITH DISABILITIES
CIVIC ENGAGEMENT ANDPEOPLE WITH DISABILITIESA Way Forward through Cross-Movement Building urie Ins i u e or Disabili Polic Sillerman Cen er or he d ancemen o Philan hrop
Civic engagementmust be an essentialelement of democraticpractice if governmentis ever to be “of thepeople, by the people,for the people.”Civic Engagement & People with Disabilities 2
ContentsAcknowledgments. 4Executive Summary . 5Findings: Overview . 16Introduction . 18I: Our Questions and Methods . 21II: Findings . 21III: Recommendations . 33IV: Conclusion . 36Civic Engagement & People with Disabilities 3
AcknowledgmentsCreditsAuthors Sandy Ho, Susan Eaton, and Monika MitraDesigner Finn GardinerThis report would not be possible without our surveyrespondents, interview participants from disabilityrights communities and civic engagement sectors, andTwitter chat contributors. We would like to extendour gratitude and appreciation to the following peoplefor their support and leadership: Dr. Monika Mitra,director of Lurie Institute for Disability Policy; FinnGardiner, communications specialist of Lurie Institutefor Disability Policy; Amy AbuShanab, assistant directorof Lurie Institute for Disability Policy; Alice Wong,founder and director of Disability Visibility Project; Dr.Susan Eaton, director of the Sillerman Center for theAdvancement of Philanthropy; Claribel Vidal, programassociate for the Civic Engagement and GovernmentProgram at the Ford Foundation and Dr. Sanjiv Rao,director of the Civic Engagement and GovernmentProgram at the Ford Foundation.About the Lurie Institute forDisability PolicyThe Lurie Institute for Disability Policy conductsmultidisciplinary research on the needs, experiences,and policy priorities of people with disabilities. Ourwork covers a wide range of topics, including theexperiences of parents with disabilities; policiesaddressing long-term services and supports for peoplewith disabilities; and health and healthcare outcomes.Moreover, the Lurie Institute houses two majorfederally funded programs of research: the NationalResearch Center for Parents with Disabilities and theCommunity Living Policy Center. These programsfocus on salient issues afecting people with disabilitiesand the communities around them to ensure the fullintegration of people with disabilities into society atlarge. The Lurie Institute was created by a generous giftfrom the Nancy Lurie Marks Family Foundationin 2007.Civic Engagement & People with Disabilities 4About the Sillerman Centerfor the Advancement ofPhilanthropyThe Sillerman Center draws upon scholarship andpractitioner experience to inform philanthropicpractice and giving. Through publications, webinars,public events, courses and fellowships, weengage emerging and established members of thephilanthropic community across the United States.The Center was established in 2008 by a generous giftfrom Laura and Robert Sillerman ’69. The SillermanCenter’s work includes publications on grantmakingfor social justice, seminars and lectures on socialjustice grantmaking, partnerships with foundationsand community leaders, support for graduate studentsinterested in philanthropic careers, and technicalassistance for youth philanthropy organizations inMassachusetts.How to Cite This ReportSandy Ho, Susan Eaton, and Monika Mitra, “CivicEngagement and People with Disabilities: A WayForward through Cross-Movement Building.” Waltham,MA: The Lurie Institute for Disability Policy, BrandeisUniversity / New York, NY: Ford Foundation CivicEngagement and Government Program, April 2020Funding StatementThe authors received fnancial support from the FordFoundation’s Civic Engagement and GovernmentProgram.Contact UsLurie Institute for Disability Policy:lurie.brandeis.edu lurie@brandeis.eduSillerman Center for the Advancement of Philanthropy:heller.brandeis.edu/sillerman sillermancenter@brandeis.edu
Executive SummaryCivic engagement must be an essential element ofdemocratic practice if government is ever to be “ofthe people, by the people, for the people.” But forpeople with disabilities, this foundational practiceis replete with systemic barriers and challenges.People of color with disabilities, compared to theirwhite disabled counterparts, experience even morelimited access to existing pathways of participationand meaningful infuence over government and civiclife. This is not surprising information, if we note thatresearch in education, health, and employment, haslong shown that people of color have limited accessto opportunities and services. This social exclusion ofpeople with disabilities and people of color is directlytied to underrepresentation in civic engagement.1Consequently, even the public discourse and civicengagement eforts that most directly afect the livesof people with disabilities tend to center and privilegevoices of white, nondisabled people. This directlycontributes to a systemic imbalance of power andrepresentation across all levels of US government andcivic life.Twenty-six percentof the Americanadult populationhas some typeof disability.2However, evenof adults in theeforts designedUS have a disabilityto engage peoplewith disabilities incivic participationand leadershipare not typically informed by the lived experiencesof disabled people. As a result, members of thedisability community experience civic engagement asfragmented, refective of ableist social attitudes, andfull of barriers to participation. This marginalizationof disability community voices in civic life has ledgenerations of the disability community to be excluded %12from participation in our shared democracy. The lackof a stable foundation for disabled people to accessmeaningful civic engagement has meant disabledpeople themselves hold disproportionately little powerwith respect to their social, economic and politicalprogress.Both historic and recent social movements teach usthat civic engagement practices must center peopleclosest to the challenges those movements are tryingto address. But even the most progressive of eforts,including contemporary civic engagement work,still do not include people with disabilities asactive members and leaders. To disrupt the cycle ofsocial, health, and economic disparities that peoplewith disabilities experience, sustained representationand participation of people with disabilities isnecessary. This must include and be led by disabledpeople inside and outside of traditional democraticprocesses. A truly democratic system that providesequitable opportunities for civic participation forpeople with disabilities, including the marginalizeddisabled communities requires relationship buildingand allyship across movements, and across thepublic sector (civic, philanthropic, government,etc.). Philanthropy holds the potential to catalyzeconversations around these necessary changes andsupport eforts led by people with disabilities tochallenge ableist norms around power, representation,and participation and increase the infuence peoplewith disabilities have over systems, structures, policiesand issues.This report presents a national overview of the barriersto civic engagement that disabled people experience.Drawing on our fndings from surveys, a Twitterchat, and interviews, we ofer recommendations forthe philanthropic sector and for civic engagementorganizations aspiring to create a more inclusive andresponsive democracy to build civic power amongpeople with disabilities. Civic power in this reportRobert Wood Johnson Foundation, “Culture of Health Sentinel Community Insights: Health Equity”Centers for Disease Control and Prevention, Disability Impacts All of UsCivic Engagement & People with Disabilities 5
Civic engagement isan essential element ofdemocratic practice,but for people withdisabilities, thisfoundational practiceis replete with barriersand challenges.Civic Engagement & People with Disabilities 6
is conceptualized as opportunities for people withdisabilities to amplify, mobilize, and elevate their voicesand infuence within democracy.This report centers the expertise, insights and livedexperiences of people with disabilities, including leadersfrom various disability communities. Our fndingsreafrm that no disability rights issue exists outsidethe sphere of civic engagement and no meaningful civicengagement strategy can emerge without attention todisability rights.Supported by the Ford Foundation’s Civic Engagementand Government (CEG) program, this report is acollaboration between the Lurie Institute for DisabilityPolicy and the Sillerman Center for the Advancement ofPhilanthropy, both based at Brandeis University’s HellerSchool for Social Policy. The disability rights mantra“nothing about us, without us” informs the questions,methods and content in this report. We hope thefndings and recommendations will inspire new thinkingand action within philanthropy and civic engagementspaces, and spark courageous conversations and informpractices within the vital organizations working tostrengthen democracy in the United States.Our Questions & MethodsOur research is guided by four principal questions:How do people with disabilitiesand leaders in the disabilityrights community conceptualizeand define civic engagement?How do disabled people andleaders in the disability rightscommunity characterize currentopportunities and activity withinthe civic engagement ecosystem?To what extent do traditionalcivic engagement organizationsimplement disability rightsframeworks into their programs,and practices? What questionsdo existing civic engagementpractitioners have aboutdisability rights?These questions were shaped by members of thedisability community and by our own assessmentsof disability-related knowledge gaps, both in thephilanthropic sector and among civic engagementpractitioners. We sought data and insights from a)disability rights leaders b) disabled people who areinvolved with the disability community in variouscapacities, and c) representatives from more broadlyfocused civic engagement organizations.We gathered information through interviews, onlineengagement and an online survey. We conducted18 interviews across both Ford Foundation’s civicengagement grantees and with leaders from thedisability rights community.3 We also facilitated a#DisabilityCivics Twitter chat, co-hosted by Alice Wongof Disability Visibility Project. This moderated chatengaged 272 contributors who are a representative sliceof disability community members active on Twitter.Finally, an online survey of self-identifed people withdisabilities living in the U.S. resulted in responses from360 participants.The diversity of data sources provides amultidimensional understanding of the perceptions andpriorities of people with disabilities, illuminates ongoingharms, and informs our recommendations about howto begin to close these gaps. However, it is crucial toacknowledge the limitations of this research. Becauseof the layered systemic inequality that bars people withdisabilities from full participation and access to publiclife, many people with disabilities live in institutionsand/or have no access to the internet, on which muchof this research relies. In considering next-steps tofurther the work of building an inclusive democracy,we suggest that future research should purposefullyoversample disabled people of color and disabled peoplewho are LGBTQ, and identify with other marginalizedcommunities including disabled people living ininstitutional settings, and/or people with limited accessto the internet.How might philanthropy, civic engagementpractitioners, and disability rightsleaders work together to create moreopportunities for accessible, equitable,and meaningful civic engagement practice?3Among the 13 disabled people who were interviewed - 6 identify as a disabled person of color, and 3 identify as adisabled LGBTQ person of color.Civic Engagement & People with Disabilities 7
712Diverse datasources lead to.total participants,includingUnderstanding18 interviewsIlluminatingwith Ford Foundation civicengagement grantees anddisability rights leadersthe priorities andperceptions of peoplewith disabilitiesongoing harmsInforming272 participantsour recommendationsto support civicengagement amongpeople with disabilitiesin the #DisabilityCivicsTwitter chat360 respondentsto our online surveyCivic Engagement & People with Disabilities 8Further research thatbuilds on our findingsand includes disabledpeople who identifywith multiple marginalizedidentities
Findings: Disabled PeopleExperience Democracy asFragmented, Inaccessible, andAbleistOur data show that people with disabilities experienceour democracy as fragmented, inaccessible, and ableist.Despite the increased focus on inclusion across oursociety, when it comes to civic engagement, peoplewith disabilities and the disability rights communityrepeatedly describe being treated as “people withspecial needs.” Our data repeatedly showed that peoplewith disabilities feel welcome in civic spaces only toprovide solutions to immediate physical access barriersor to represent “disability issues,” such as those thatmanifest in health care or special education. But ofcourse, disabled people and the broader disability rightscommunity are also leaders and participants with ideas,experiences and knowledge to contribute on the fullrange of issues and challenges in our democracy. Lawsdesigned to integrate people with disabilities in societydo indeed exist. But our research illuminates the waysthat dominant social notions around disability shape selfidentity and limit civic power for people with disabilities.We fnd, too, that civic engagement practitioners tend tobe uninformed about the interconnectedness of disabilityidentity and social justice issues and thus, unsure abouthow to meaningfully incorporate disability rights intocurrent civic engagement strategies.As a disabled person,I face stereotypes andbigotry about people withdisabilities. My credibility isalways in question.No one presumes mycompetence.essential for theirsocial, political, andeconomic livelihoods,and as an integralmechanism thatenables a place and adegree of power in ademocratic society. %of respondentsexperiencedbarriers to civicengagementAcross interviewswith disability rightsleaders, responsesto descriptions ofcivic engagementand disability rightswere frequently tiedto social experiences of daily living. Several disabilityrights leaders shared stories about what compelledtheir initial involvement in disability rights and civicengagement. These stories often depicted momentswhen their rights as a disabled person were deniedand required them to become civically involved inorder to access basic opportunities at work, school andother settings. In listening to disabled people describewhat civic engagement means to them, it is clear thatwhether it is through voting, attending town halls,writing letters to public ofcials, joining rallies, comingtogether with other disabled people, or participatingin online discussions -- people with disabilities areconsciously motivated by gaining access to civic powerin order to meaningfully participate in, be representedby, and contribute their leadership towards a moreinclusive democracy. Despite this deep connection andcommitment to civic engagement, our survey responsesrevealed that 57 percent of respondents “Experiencedbarriers to participate in civic engagement.” This signifesthat the barriers and challenges to civic engagementprevent disabled people from accessing civic life, andhighlights the ways civic engagement practitioners areinefectual in engaging people with disabilities in theirwork.For the 61 million people in the U.S. who live witha disability4, democracy is a story about limited andunequal power, voice, and representation, proving thatour democracy has yet to fulfll its promise to all. Peoplewith disabilities conceptualize civic engagement as4Centers for Disease Control and Prevention, Disability Impacts All of Us, 1Civic Engagement & People with Disabilities 9
This word cloud represents barriers to civic engagement thatpeople with disabilities listed on our survey and in interviews.Civic Engagement & People with Disabilities 10
Discrete Networks, CivicEngagement & Disability Rights % % %of survey respondents withdisabilities work in disabilityrights with other members ofthe disability communityof survey respondents work withnon-disability civic engagementorganizationswork with civic engagementorganizations that addressdisability rightsAbleist AttitudesToward Civic EngagementOver O%of survey respondentsidentified inaccessibilityas a barrier to civicengagementCross-Movement AttitudesToward Civic EngagementLegally obligated to includedisability rightsFramework is incompletewithout disability inclusionIntention, but not action, toinclude disabled peopleIntention and partnership withdisability organizationsAct from preconceivedideas of disabilityElevate disabled leadersExpect disability groupsto come to themGo to the accessible spacesCivic Engagement & People with Disabilities 11
Our research highlights three principal barriers to civicengagement for people with disabilities.1. Social stigma and ableism are obstaclesto civic participation for people withdisabilities, and in particular for disabledpeople who also experience oppression dueto racism, homophobia, or transphobia andother forms of othering.Thirty-four percent of our survey respondentsindicated that “othering” related to various aspectsof their identity -- including religious afliation, race/ethnicity, disability status, gender identity, and/or sexualorientation – made them feel unwelcome or invisiblein civic engagement spaces. When asked to elaborate,one respondent wrote “As a disabled person I facestereotypes and bigotry about people with disabilities.My credibility is always in question. No one presumes mycompetence.” Ableist attitudes, including those that senda message that people with disabilities are not alreadyactive contributors towards a more inclusive democracy,discourage disabled people from participating indemocratic pathways. Additionally, more thantwenty percent of our survey respondents identifed“Inaccessibility” as a barrier of civic engagement.2. Discrete networks and lack of intentionaloverlap of civic engagement and disabilityrights ecosystems impede opportunities forshared learning, collaboration and equitable,effective allyship.Twenty percent of people with disabilities from oursurvey reported that they engage in disability rightswork with “Members of the disability community.”5This is compared to 8 percent who work with “Civicengagement organizations that are not disabilityrights groups,” and 13 percent who work with “Civicengagement organizations that are disability rightsgroups.” In other words, when it comes to civicengagement people with disabilities are more likely tobe involved in disability advocacy with other disabledpeople, and disability organizations than they arewith traditional civic engagement organizations. Thissuggests mainstream civic engagement organizationsare not engaged with, or informed by the insights andlived experiences of disability rights leaders, who deeplyunderstand and can act upon the inextricable link5This data point suggests the necessity of furtherresearch about groups and organizations disabled peoplework with to access opportunities.Civic Engagement & People with Disabilities 12between disability rights and civic engagement. This lackof overlap between movements creates silos that obstructcross-movement collaboration, and erect barriers tocivic participation for disabled people - many of whomelaborated on feelings of being “tokenized” in theirexperiences of civic participation.3. Leaders of civic engagement organizationsand movements recognize the need toinclude disability rights in their work.However, the realities of civic participationfor people with disabilities suggest that thisrecognition is not translated into practice.However, the realities of civic participation for peoplewith disabilities suggest that this recognition is nottranslated into practice. Interviews with both disabledleaders in community-based organizations, and leadersfrom nondisabled civic engagement organizations suggestthat the diferent types of organizations view each otheras existing in separate spheres. Disability rights leadersand community members emphasized that inclusivepractices require intentional, and meaningful allyshipthat infuse cross-movement collaboration. Disabledleaders shared that they observed typical disability rightspractices are often framed as an obligation, and not afundamental pathway to democracy and civic power.Civic engagement practitioners shared the gaps in theirknowledge around infusing disability rights withinexisting strategies beyond the framework of disabilityaccommodations. Despite the calls from people withdisabilities for cross-movement strategies, and efectiveallyship, embedding disability rights work in civicengagement strategies remains a challenge for the feld.RecommendationsOur respondents ofered several forward-looking ideasfor how to best advance the entwined goals of advancingdisability rights and empowering underrepresentedand marginalized people with disabilities to infuence,participate, and engage in democracy.Empower disability pride, voice, and identitythrough narrative change that includeelevation of stories/experiences thatchallenge the ableist norms that inhibit civicpower for people with disabilities.Our participants identifed stigma and ableism as barriersthat prevent, minimize, and dismiss the participationand contributions of disabled people in civic leadership.Reversing these entrenched biases requires more than
policy and rights enforcement, but a narrative shiftthat is disability-led, upends norms and challengesableism is needed. For instance, one disabled queerand Latinx woman described the impact a disabilitypride program had on the development of her own selfidentity, “At frst there was this fear that if I do anythingdisability-related that’s all I’ll ever do. And then I joinedthe program and I realized this whole other layer ofoppression that I didn’t even realize existed.”This particular program she noted was led by a disabledperson, and fundamentally changed her perceptionsaround who in our society have leadership roles.Traditional narratives about who holds power in ourdemocracy are rarely informed or led by people withdisabilities. Work that changes dominant narrativesaround power and roles in democracy, one thatelevates examples of people with disabilities leadingmovements, that is informed by the identities andhistories of the disability rights communities theyrefect, can as a result, foster notions of belongingand empower the disability community. Civicengagement is made more infuential through thepower a community wields to infuence systems ofgovernment. Thus, it is critical that a narrative strategyto advance disability leadership, power, and voiceis disabled-led and elevated as a value within crossmovement work. In the face of social stigma and ableistattitudes, grant makers can fund work that emboldensnarrative change within social justice movements andcivic engagement work to bolster disability pride andrepresentation.Come to where we are:the accessible spaces.Facilitate cross-movement collaboration toencourage knowledge sharing, relationshipbuilding, and to illuminate shared valuesand goals between disability rights andcivic engagement ecosystems.Philanthropy is well positioned to convene, inform, andresource movement leaders to encourage knowledgesharing that would mitigate the harm caused by thesiloed sectors of civic engagement and disability rights.A Twitter chat participant provided an example of howto structure cross-movement collaboration: “Come towhere we are: the accessible spaces.”Grantmakers who support work that advances civicengagement will need to also support intentionaleforts in cross-movement building and networkweaving. Suggestions from survey respondents fromboth disability and non-disability groups included“provide disability rights history workshops,” “Antiableism trainings, webinars,” and “Disability historyawareness, knowing how existing rights work, knowinghow existing systems work, training that actuallyprepares people for advocacy work.”At first there was this fearthat if I do anythingdisability-related that’sall I’ll ever do. And thenI joined the program andI realized this whole otherlayer of oppression that Ididn’t even realize existed.Support disabled leaders who also identifywith other marginalized communitiesacross all areas of social justice issues.Overwhelmingly, disability rights leaders sharedthat the limited or outright absence of a focus ondisability rights are manifestations of civic engagementpractices implemented without an intersectional lens.Repeatedly, marginalized disabled people emphasizedthat disability is embodied and represented across alldemographics and social issues. Marginalized disabledleaders, such as disabled leaders of color, experiencestark barriers in participation and representationacross social movements in comparison to their whitedisabled counterparts. This gap in disabled leadershipimpedes cross-movement growth because it leaves outthe vital intersectional expertise of disabled leadersof color who experience both ableism and racismfor example. For instance, many as twenty percentof prison inmates reportedly have a serious mentalillness.6 When considering police violence and thecriminal justice system across race, disability, and6Rebecca Vallas, Disabled Behind Bars: The Mass Incarceration of People with Disabilities inAmerica’s Jails and PrisonsCivic Engagement & People with Disabilities 13
poverty having the ability to apply multiple frameworkshelps to deeply understand the cause and impact of thesesystems. This understanding is important to creating thesolutions that will fght against, eliminate, and reimaginemore just and inclusive alternatives. This level ofknowledge and expertise can be provided by leadershipthat comes from disabled leaders of color and theircommunities who experience the greatest injustice withinincarceral systems. It is thus imperative that disabledleaders with marginalized identities have access tosustained support, training, and power to build coalitionsand initiatives across social justice movements. Someways this support can be bolstered and more intentionalis by examining the traditional internships and leadershipdevelopment opportunities in the civic engagement feldthat often are not geared towards people with disabilities.More specifcally, in interviews with marginalizeddisabled leaders, several recommended that existing civicengagement programs that have traditionally providedcoveted internships or other exclusive professionalopportunities should re-evaluate their outreach, andrecruitment processes to be inclusive and accessiblefor people with disabilities. Thus, increasing access todemocratic power.Empowerdisability pride, voice,and narrativesBuildcross-movementrelationships betweenphilanthrophy, civic engagement,and civil rights organizationsFosterleadership skills amongmarginalized disabled peopleDisability-LedCivic EngagementTraditionalCivic EngagementCrossMovementStrategiesPosition disabled-led organizations andcoalitions as valued, equal partners in effortsto build a more inclusive democracy.Disability rights is a powerful conduit for civicengagement as the history of the disability rights andindependent living movement has demonstrated.Still, in spite of those victories, disabled people havelimited access to power, privilege, and infuencewithin democratic processes compared to nondisabledcounterparts. Intentionally elevating disabled leadersand disabled-led organizations might help reverse thetendency to retroft disability rights as an afterthoughtto civic engagement strategies. Engaging people withdisabilities in the development of cross-movement workfrom the outset ensures that disabled people infuencethe priorities and strategies of the public sector, and make“nothing about us, without us” actualized in practice.Allywith people with disabilities fromstart to finish, rather than retrofittingdisability inclusion in public engagementCivic Engagement & People with Disabilities 14
Engaging people withdisabilities in thedevelopment of crossmovement work from theoutset ensures that disabledpeople influence thepriorities and strategies ofthe public sector, and make“nothing about us, withoutus” actualized in practice.Civic Engagement & People with Disabilities 15
MAKING CHANGE INOUR COMMUNITIESCourtesy of ADAPT/James O’ConnellMany disabled people work to make their communitiesbetter. Working to make your community better is called“civic engagement.” Civic engagement includesvoting, taking collective action, activism, and engagingwith your community.Civic engagement organizations often work with peoplewith disabilities, but they don’t always know exactly whatdisabled people want and need. We heard from over 700people who told us about the problems they had workingwith civic engagement organizations. They also sharedideas with us about how organizations can help themmake lasting change in their communities.Source: d-volunteeringPeople with disabilities face3 major problemswhen working with civicengagement organizations.Discrimination 23Discrimination makes it harder for people to feelconfident about using their own voice tochange the
tied to underrepresentation in civic engagement. 1 . Consequently, even the public discourse and civic engagement eforts that most directly afect the lives of people with disabilities tend to center and privilege voices of white, nondisabled people. This directly contributes to a systemic imbalance of power and
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