What is design? Is it a professional pursuit, confined to specialties such as product design, graphic design, user-experience design, or architectural design? Or should we think of it more broadly, as a way to understand and transform our physical surroundings, as an act of world-building and world-changing? In either view, design happens when attention is paid to how things are used, how they look, and how they change some aspect of human experience.
Photo Richard Downing, Courtesy Sins Invalid
And each approach carries a different political meaning. The strictest definitions—those focused on professional design—tend to obscure the contributions of marginalized designers, especially those engaged with disability. Disabled people often lack access to design training, and at the same time, professional designers often neglect the access needs of disabled people, routinely assuming standard users. Meanwhile, design school curricula regularly fail to address disability issues.
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Where disability and design meet, however, the distinctions between professional design and design-as-world-building begin to unravel. Disability-inclusive designs typically aim to help disabled people adapt to existing environments, allowing people whose bodies or minds diverge from the norm to fit into the prevailing expectations of Western, capitalist societies. Plenty of tools might be designed to enable someone to show up at work at regular times, to produce in the same ways as nondisabled peers, and to sense the surrounding environment in conventional ways (such as by hearing or seeing). The words “disability” and “design” are most often paired in contexts where the desired outcome is a functional product—an assistive technology (such as a cane or wheelchair) or an architectural feature (such as a wheelchair ramp). In many cases, the types of accessibility that laws mandate relate to making a person a better worker and employee: George H.W. Bush signed such legislation into law in large part to help disabled people find employment, so as to keep them off welfare.
Designs that address disability range from straightforward peg legs to highly technological assistive devices like robotic body suits. These implements reflect the political and economic context in which they are produced, and accordingly, often reveal a lot about society’s perceptions of disabled people. In the 20th century, the United States military developed technologies to enable injured soldiers to rejoin the workforce. Designers also addressed the polio epidemic, as survivors sought access to education and employment. A social movement of disabled people—comprising in part these two populations—fought for legal rights for decades, their efforts culminating in the 1990 Americans with Disabilities Act (ADA). The ADA set some accessible design standards, but it focuses largely on certain types of disabilities. We have come to expect wheelchair ramps, automatic doors, and audiovisual signals because the public is most widely aware of people with sensory or mobility impairments, including wheelchair users, blind people, and Deaf or Hard of Hearing people.
Photos Michael Maloney/Design by Casey Gollan
In addition to the types of access mandated by law in public spaces, there is a separate realm of consumer products for purchase and use in private homes, spaces not regulated by the ADA. These products include everything from grab bars used in showers to OXO Good Grips kitchen products designed by Betsey Farber, a woman with arthritis. The consumer-based approach introduces economic barriers to disabled people who are low-income or unable to work. Both legally mandated accessibility and forms of assistive technology available on the market assume that the typical disabled person is able to (and wants to) conform to middle-class working and living norms. Numerous corporate accessibility departments, university research laboratories, and other sites of design development have grown around both the legal and market-based approaches to disability design.
A NEW PARADIGM surrounding disability and design has emerged since the 1970s—one that is led by disabled people making life meaningful and accessible on their own terms, celebrating difference rather than encouraging people to conform to ableist norms. In more recent years, alliances have formed among those with chronic illnesses, mental disability, and neurodivergence, creating cross-disability solidarity and acknowledging the impossibility of one-size-fits-all standards. The movement embraces disability justice as a framework. First introduced by disabled people of color, poor disabled people, and queer disabled people, disability justice challenges individualism and instead calls for intersectional and collective understandings of accessibility. It also pushes back against the idea that disabled people must become productive in capitalist terms.
Disability justice has influenced various approaches to design, resulting in what I call “disability culture design.” The term “disability culture” describes the forms of cultural production that emerge when disabled people come together (whether in person or virtually) to socialize, collaborate, and form communities. When this happens, we engage in design—in the broad, world-building sense of the term. Disability culture is both material and practical because navigating worlds that are not built for us prompts disabled people to hack, tinker with, and change our environment. And when we come together in disability communities, we are also often creating microworlds, where we can engage while having our needs met. From these microworlds come new ways of thinking and doing that are often unimaginable within communities that are predominantly nondisabled.
Disability culture design builds on a long tradition of disabled people pushing to broaden the concept of “design” beyond the professionalized realms of architecture, product design, graphic design, and user experience. Until recently, marginalized people have lacked access to training in these fields. But all the while, design has been happening in disabled communities. These practices do not take place in isolation, but with fellow community members or in collaboration with nondisabled allies. Projects such as Raymond Lifchez and Barbara Winslow’s book Design for Independent Living: The Environment and Physically Disabled People (1979), Bruce Bassett’s film A House for Someone Unlike Me (1984),and Caitrin Lynch and Sara Hendren’s online repository of life hacks, Engineering at Home (2016),have documented moments in which nondisabled designers have reflected on how their exposure to disability culture design has challenged their assumptions about who is an expert on the built environment.
Courtesy Bojana Coklyat and Shannon Finnegan
IN THE LAST DECADE, disabled artists have led the way in framing disability as a culture. The collective Sins Invalid doesn’t just put on provocative performances about disability, sex, climate change, and other subjects; its members also produce movement-defining documents, such as the primer Skin, Tooth, and Bone: The Basis of Movement is Our People (2016), with a key section called “Principles of Disability Justice.” There, the authors outline principles such as intersectionality, leadership by those most impacted, anti-capitalism, and collective access that have shaped the broader artistic and political movement.
Likewise, Alice Sheppard, a wheelchair dancer and scholar, focuses on the “cultural-aesthetic” dimensions of performances by disabled people. As Sheppard framed it recently in the New York Times, her work is part of a disability cultural community that treats “access as an ethic, as an aesthetic, as a practice, as a promise, as a relationship with the audience.” In 2016 Sheppard founded Kinetic Light, a disability arts ensemble that also includes Laurel Lawson, Michael Maag, and Jerron Herman. For the performance Descent (2017), Sheppard collaborated with Hendren and her students at Olin College of Engineering to design a ramped stage whose effect she described as “sensual, glorious, and inviting … every chair user’s dream, encouraging every ramp desire.” Audiences could watch the performance and/or opt for an audio app that provided multiple description tracks, ranging from literal to poetic. These technologies continue to be part of Kinetic Light’s work, such as the 2022 performance Wired, which includes both in-person and remote performances.
Disability culture design views the lived experience of disability as a design practice, reframing disabled people as design experts. Marta Rose of Divergent Design Studios, for example, puts neurodivergent thinking at the center of her strategies for interior design, landscape design, and other fields. While biomedical specialists say that neurodivergent people have deficiencies of “executive functioning,” such as making plans and completing tasks in the manner of a corporate manager, Rose argues instead that they are designers—people who solve problems in creative ways. Because design values iteration (failure, adaptation, re-invention), this reframing avoids treating neurodivergence as a problem to be solved. Rose’s approach includes support sessions, “body doubling” (coworking for better focus, a concept from ADHD communities), discussion groups, and other opportunities for long-distance connection. This kind of collaboration is a hallmark of disability culture design.
Disabled designers also push back against the prevalent culture of “design thinking.” In their project #CriticalAxis, Alex Haagaard and Liz Jackson examine representations of disability in corporate technology and product advertising for companies such as Samsung and LEGO. Haagaard and Jackson point out the negative stereotypes and tropes that linger even when the messaging appears to support disabled people. For example, they argue that an ad for “adaptive deodorant” from the company Degree prioritizes the representation of disabled people as athletes who “overcome” disabilities with athleticism. The pair also challenge the do-gooder intentions behind technologies that Jackson terms “disability dongles,” such as gloves that offer rudimentry translations of American Sign Language into spoken English or wheelchairs designed to climb stairs, which are “well intended elegant, yet useless solution[s] to a problem we never knew we had.”
DISABILITY CULTURE DESIGN treats design as “more than functional.” In the mainstream, much of disability design focuses on enabling (in the medical, functional, and assistive sense) certain types of “normal” and “productive” behaviors. But disability culture design starts in a different place: it’s about treating disability communities as places where design expertise exists and where accessibility is aesthetic and experiential, not just a tool for conforming to the norm. It centers around interdependence, particularly the ways that disabled people engage in forms of mutual aid, collective access, and “care work.” Disability culture design encourages disabled people to make things easier for one another, rather than relying on nondisabled people exclusively for help.
This participatory approach is evident in Bojana Coklyat and Shannon Finnegan’s ongoing project “Alt-Text as Poetry.” Building on methods advocated by blind scholar Georgina Kleege and performance art specialist Scott Wallin, the duo developed tools—workshops, workbooks, a website—for allowing multiple people to write descriptions of online images and videos, making them accessible to people who use screen reader technologies. This offers an opportunity for community participation: in 2020 Coklyat and Finnegan hosted an “Alt-Text Potluck,” where community members met and shared their best image descriptions. The focus of events such as the “Potluck” is less on the functionality of various technologies than on the types of protocols and interactions disability communities uphold as their standard of participation.
Disability culture design tends to emphasize pleasurable, artistic, or leisurely activities, often involving free online material and events with options for remote participation. The Remote Access Dance Party series, which began in 2020, appropriates tools intended for office productivity and uses them to engender joy and celebration. The term “remote access” refers to an accommodation that many disabled people request, whether due to chronic illness or the Covid-19 pandemic. Hosted by the Critical Design Lab, the parties are developed and organized by Kevin Gotkin (also known as DJ Who Girl), a disability arts organizer based in New York. The parties take place on Zoom and other digital platforms, and feature live DJ sets, disability arts showcases, karaoke, and other activities. They always include live captioning and American Sign Language interpretation, and partygoers collaborate to describe the sounds in a participatory and layered way. The production of access becomes a communal activity within the party. The collectives Sins Invalid and CRIP RAVE have hosted similar parties. In the context of the pandemic, these activities have resisted the pull toward “returning to normal” and highlighted the value of creative remote accommodations. They use design to show that disability-led remote and digital projects offer some of the same benefits as in-person activities, as well as additional benefits available only in virtual spaces.
Disability culture design shows and celebrates disability as difference, rather than hiding or trying to correct it. Designer Sky Cubacub’s Rebirth Garments feature clothing for bodies of wide-ranging disabilities, genders, sizes, and shapes. The garments, which can be custom-made to suit any individual, celebrate difference, drawing attention to the bodies they adorn with bright colors and loud, clashing patterns. Usually made of spandex, they accentuate, rather than conceal, body shapes. In fashion shows, Cubacub integrates practices from Gotkin’s Remote Access party, as well as Coklyat and Finnegan’s Alt-Text as Poetry method, where models perform to music with lyrics that incorporate image descriptions.
Finally, disability culture design is always political, in that it challenges the idea that everyone should try to conform to normative expectations of bodies and minds. Graphic designer Jen White-Johnson challenges the iconography typically associated with autism—such as the missing puzzle piece used by the organization Autism Speaks, which could be read as suggesting that something is “missing” from the minds of Autistic people—with alternative symbols that signify the value of Black disabled people like herself; White-Johnson is also the mother of an autistic child. Her Black Disabled Lives Matter logo superimposes an infinity sign on a Black Power fist, symbolizing possibility rather than brokenness. The symbol is a graphic manifestation of White-Johnson’s philosophy that “mothering as an act of Resistance means to redesign ableist visual culture.” Another of her graphics is a pink and silver “Autistic Joy” logo that she prints on shiny hologram stickers in a gesture toward greater visibility. Her work forms a visual language that diverges radically from standard icons such as the international symbol of access (the person-in-a-wheelchair icon used for accessible parking spots and bathrooms) or the puzzle piece. White-Johnson’s work instead roots itself in Black disability culture and activism, and carves space for celebrating and valuing Black disabled lives.
Courtesy Jen White-Johnson.
In recent years, schools training professional designers have shown growing interest in design for disability. However, as Black and Chicana feminists have argued, these schools and designers tend to simply “add and stir” disability into a mix of diversity, equity, and inclusion (DEI). But disability is not a technical problem to solve, nor is accessibility a simple standard to apply. Instead, we should allow disability culture design to restructure university laboratories and corporate research centers. New collectives of disabled designers and creative producers—Sins Invalid; the Critical Design Lab; the UC Berkeley “RadMad” Disability Lab; the Concordia University Access-in-the-Making Lab; Bodies in Translation: Activist Art, Technology, and Access to Life; the Disability Justice and Crip Culture Collaboratory; the Disability Justice Culture Club; Tangled Art + Disability Gallery; the Disability Visibility Project; the CripTech Incubator, and others—are fostering collaborative approaches, rooted in disability justice, that recognize the important role of interdependence in disability communities, and experiment with how it can shape design methods. Disability culture design turns attention to a central question of disability activism since the 1960s: why be normal?