The history of disability activism proves that utopian imaginaries of policy change empower disabled people and undo ableist power structures.

One of the most famous centers was founded in Berkeley by students under the leadership of Ed Roberts (Levy, 1988). Roberts had successfully litigated his way into further education at the University of California, Berkeley, where he was influenced by the counterculture of the 1960s. The aim of the center was to serve the local community of disabled people, but it also played an influential role at the beginning of the disability rights movement, including in funneling federal and local funds towards supporting disabled people and activism and in forming a normative vision of a better society (Charlton, 2000, p. 132). The center offered one, important, launchpad for the leadership of the disability rights movement to launch protests, inform wider society about the efforts of the movement and changes to legal provisions for disabled people, and coordinate with other groups to develop and lobby for new legislative initiatives. The independent living centers are thus practical criptopias that used the material and ideational structures of their time (such as federal and local funding and consumer ideology) to produce concrete evidence that—with suitable community support for people with physical impairments to overcome social and physical barriers, such as inaccessible housing—a fully integrated society is possible and plausible.

Secondly, the movement pursued a grounded utopia by lobbying for the passing of legislation to enforce equal status as citizens and contributors to the economy. The focus on law may seem antithetical to the utopian project because laws serve to regulate conflict and disagreements which arise in imperfect societies, for instance about the distribution of limited resources. For this reason, classic writers such as More highlighted the absence of a comprehensive body of laws as a notable feature of their utopian society (Herman, 2016; More, 1685, p. 148). I introduced above how utopianism has since broadened beyond the articulation of universal blueprints of the perfect society and this move necessitates a greater concern with how to transform an unjust legal system. A broader conception of utopia also reveals the social dreaming that motivates legislation, most obviously in the articulation of, and struggle for the protection of, human and civil rights (cf. Moyn, 2012, p. 1).

Law’s utopian dimension has historically had a negative impact on disabled people. In the early 20th century, immigration and forced sterilization laws reflected societal anxieties about the decline of US society caused by rapid urbanization, immigration, and industrialization, and the subsequent popularity of eugenics (Nielsen, 2012, p. 100). Disability became a threat to the future wellbeing, or ‘purity’, of society (or specifically, elites) and laws served to manage or ideally eradicate the ‘problem’ of disability. However, just as citizenship was defined by excluding and controlling those deemed different, the dominated found in the language of rights and citizenship a framework to voice their oppression and how to transcend it (Nielsen, 2012, p. 133). The expanding welfare state both provided at times humiliating hurdles to a life of dignity and also a way to demand rights, services, and fund activism. Crucially, the emphasis on rights and discrimination within disability activism exploited a tension within the medical model: it assumes a neat connection between impairment, diagnosed by a medical practitioner or immigration officer, and disability; yet disability has a strong socio-cultural dimension to it as it serves to delineate moral behavior in modern mass society, for instance by associating certain disabilities with morally deviant behavior. Disabled people (especially those otherwise privileged) often experience this sleight of hand as they become subject to seemingly arbitrary decision-making on their ability to work or receive federal benefits (Longmore & Goldberger, 2000). Disability activists reverted the sleight of hand by focusing on disability and not impairment and claiming that it is a signifier of discrimination not diagnosis. This is visible in one of the early organizations founded in the 20th century, The League of Physically Handicapped. The name of the organization alludes to the fact that disabled people in New York were disqualified from work through the arbitrary requirement of physical examinations for all jobs—disabled people were stamped as ‘PH’ in their records (Fleischer et al., 2012). What characterized members was therefore a shared sense of discrimination rather than the specifics of their impairment and it is this discrimination that prevents their equal participation in the economy.

To exploit this weakness in the medical model, The League of Physically Handicapped employed strategies of civil disobedience familiar from the labor movements of the early 20 century—activists however consistently note the additional dimension that disability brings to these strategies, both for activists (e.g. getting to inaccessible places), and judges and police officers unsure how to deal with them. The focus deepened further as new generations of activists engaged with other civil rights struggles. The movement was ‘energized by, overlapping with, and similar to other civil rights movements across the nation, as disabled people experienced the 1960s and 1970s as a time of excitement, organizational strength, and identity exploration’ (Nielsen, 2012, p. 160). The public protests of the African American civil rights movement and landmark rulings such as Brown vs Education, Topeka, brought home the importance of litigation, legislation, and demonstrations and treating disability in terms of a rights issue (Winter, 2003).

The struggle for equal rights before the law often involved a focus on concrete, immediate issues. The Architectural Barriers Act (ABA) in 1968, for instance, offered the important requirement that buildings leased or built and altered using federal funds be accessible. The Civil Rights Act of 1964, which prohibited the discrimination on the basis of race, religion, sex, and country of origin but did not mention disability, sparked a decade of struggles across US states centered on extending the protections to disabled people (Patterson, 2018, p. 418). Activists used a 1972 reauthorization of the Federal Rehabilitation Act to advance their cause. Specifically, an initially little-discussed addition of section 504 to the legislation by a liberal Democratic Senator, prohibiting discrimination against disabled people by services and activities receiving federal funds, provided the legislative foothold for disability-centric anti-discrimination legislation (Erkulwater, 2018, p. 375). Cross-disability alliances lobbied for the implementation of 504 and on 5 April 1977 occupied a number of buildings of the US department for health, education, and welfare (Cone, 1996). The eventual implementation of section 504 was followed by other legislations and renewed activism, but the law’s provisions remained narrow in focus and weak in enforcement. The Americans with Disabilities Act (ADA) in 1990 promised to alleviate these problems by putting into place protections against discrimination based on, and requirements of reasonable accommodation of, disability (Bagenstos, 2009; Winter, 2003). Again, disability activists used common strategies to influence the ADA’s passing, including by setting up sophisticated lobbying networks in Washington and adding pressure through public protest. One example of this is activists in March 1990 ‘crawling up’ the US Capitol steps (Pelka, 2012, pp. 419, 515).

Litigation and legislation offered important means to utilize the toolkit developed by previous civil rights movements to make the utopian visions of the social model concrete. Together with the independent living centers, legislation helped normalize the model’s radical assumption that society needed to work towards enabling disabled people’s equal access to socio-economic activities. Acting ‘as if’, the movement helped shift the legislative focus from ‘managing’, erasing, or separating out disability from society towards changing society to include disabled people.

Thirdly, the movement actualized the emancipatory potential within existing power structures by challenging expectations of what disabled people can do. In their own words, we have ‘been through the worst kind of atrocities, attitudes towards us that see us as vegetables, that see us as sick and unable and having no future. I mean that got to piss you off’ (Roberts, cited in Pelka, 2012, p. 32). To challenge expectations, the activists had to become experts in areas central to the governance of society, from city planning to the lobbying of politicians: ‘we really needed to develop expertise. It couldn’t just be “we have the right to get on the bus, we have a right to go to school”’, ‘we needed to become experts in areas that we never thought about, you know, becoming architects, becoming involved in regional planning and things like that’ (Heumann, 2020; cf. Shaw, 1994, p. 166). Of particular importance were jobs held historically by non-disabled workers, and dealing with the lives and futures of disabled people. Denise Karuth served on the Massachusetts Governor’s Commission on Accessible Transportation, and Ed Roberts was appointed to the role of Director of the California Department of Vocational Rehabilitation. Deidre Davis-Butler and Judith Heumann worked for the US Department of Education. Many others founded and governed influential disability organizations, for example the Disability Rights Education and Defense Fund. The activists often had to learn these new roles and expertise as they went along, not least as disabled people are in many cases thrown into activism by changes in circumstances or moments of social discrimination. They sometimes gained important support and insight from their connections with other movements, while extending these frames of references in turn through the unique focus on disability. Lacy (1998, p. 102), for instance, moved from anti-poverty programs to working for the Center for Independent Living; Kitty Cone (1996, p. 64) helped organize women’s movements. The third example of groundedness speaks to the central role of agency in oppressed groups utopianism. It highlights that criptopias do not just change the world but ‘bring about (or seek to bring about) new forms of normalization, desire, and subjectivity’ (Cooper, 2014, p. 5). They change the activists in the process of imagining an alternative world.

The practical criptopia outlined in this section differs from the typical example of a practical utopia, the communes of the 1960s. Sargent terms these ‘intentional communities’ and defines them as consisting of a ‘group of five or more adults and their children, if any, who come from more than one nuclear family and who have chosen to live together to enhance their shared values or for some other mutually agreed upon purpose’ (Sargent, 1994, p. 15). The practical criptopias meet the criterion that they are not just a matter of convenience, but sustain a communal normative stance centered on the worth of disabled people as human beings. However, their emphasis on integration into society and autonomy necessarily counters the idea of a separate and separated commune. In this regard we may usefully describe them with Davina Cooper as everyday utopias, ‘networks and spaces that perform regular daily life, in the global North, in a radically different fashion’ (Cooper, 2014, p. 2). Unlike Cooper’s everyday utopias, however, these everyday criptopias combine utopian everyday practices with an explicit focus on pressuring and transforming political and legal institutions—precisely because these institutions have such an immediate impact on disabled people’s lives and utopian impulse. The divergence is typical of the acting ‘as if’ of oppressed group’s utopianism, which helps rethink the utopian process from the perspective of disability and disabled people.