(How) Does the Built Environment Create Disability?

Abigail Pipkin

This essay explores the disabled experience in relation to the built environment, aiming to strike a balance between structural and embodied, universal and specific. By considering a wide range of disabilities, I examine the ways in which the built environment does indeed impact the experiences of disabled people, and unpack the question of disability around the world (and outside of this world!) to think through the matter of when, where and how disability manifests. This essay also touches upon many of the debates of disability scholarship, analysing them through the lens of the anthropology of the built environment to illustrate that the study of the one has much to offer the study of the other.

Though there has been little formal anthropological work examining the relationship between the built environment and disabilities, each has much to offer the other. Architecture and its anthropological themes both shape and reflect modes and models of contemporary society. As a way of being in or experiencing the world, disability constantly vacillates between the universal and the specific. Universal because any person considered able-bodied or able-minded might themselves experience temporary or permanent disability during their lifetime. Specific because disability manifests in vastly different way across environments and societies, and individuals might experience a single disability or a whole range of disabilities. It is thus a futile task to separate disabilities for the purposes of this essay: disability is not discrete nor is it experienced discretely. Disability must always be situated within a context, and this essay will robustly examine the importance of the built environment for this context.

I shall begin this essay by stating my own position in relation to disability, before examining canonical themes in the built environment from a disability anthropology perspective, including structuralist arguments and their counterpoints. I shall then explore ways that disabled people experience different aspects of buildings and their infrastructures, supplementing existing anthropological literature with reporting from podcasts and newspapers throughout. Finally, I shall discuss the ways in which the current Covid-19 pandemic, restrictions on movement and confinement to the home have shed light on situations many disabled people face in their everyday lives, and posit that the built environment forms a singular but significant facet of a more holistic “Disability Worlds” (Ginsburg & Rapp 2013) perspective in the anthropology of disability.

A Point on Positionality

On this subject, it is of utmost importance that I outline my personal motivations and perspective. Positionality is vital to anthropological authorship and modern disability narratives strongly advocate “Nothing about us, without us”, regarding the historical dominance of medical anthropology in the anthropological study of disability with scepticism and suspicion. This maxim has a long history and has been the rallying cry of many marginalised communities in the 20th century. In the late 1990s it came to be associated with disability activism in particular thanks to a publication by James Charlton, charting the role of society in disabling individuals.

It is thus a customary courtesy for anthropologists (disabled and non-disabled alike) to detail how they came to the intersection of anthropology and disability. As Ginsburg and Rapp note (2011), the path often begins close to home. In writing this essay, I examine a topic that has been a part of my experience for nearly a decade. Eight years ago, my mother began to use mobility assistance and describe herself as disabled, due to chronic back pain and other health conditions. Before her retirement, she herself had worked as a community dentist, a role which provided accessible dentistry to those with physical and learning disabilities. It is my mother’s differing, day-to-day experiences that has led me now to consider the relationship between the built environment and disability.

Society, Structure and Space

The anthropology of the built environment has long grappled with the consequences of purely structuralist readings of buildings. The ripple effect of Morgan’s analysis of historical and contemporary First Nation societies in America is an assumption that one can understand a society’s stage in development (for Morgan, from savagery to civilisation) through its buildings (1965 [1881]). Compounding this is Bordieu’s gendered reading of the Berber House (1973), which is formalised in its dualism and stark in its absence of people. While Morgan faces criticisms for reading colonialist attitudes into buildings and societies, Bordieu might be censured for glossing over the observed practices of real people living in the Berber house. Of course, there is nuance here, as architects themselves are keenly aware of their role in shaping certain kinds of societies and sociality in the built environment.

Modern disability scholarship has likewise focused on examining the society itself rather than its material conditions, highlighting the ways in which societal attitudes, moral judgments and values have shaped disability in specific cultural contexts. Thus it has been argued that an American emphasis on individual independence has served to dis-able those who in other contexts might not be expected to go without the support of family, friends and society in their day-to-day lives (Murphy 2001). Commenting on their experience of navigating transportation systems and public spaces including buildings, two guests on the BBC’s “Ouch: Disability Talk” podcast (2018), exchange anecdotes about their different experiences in the U.K. and North America. Comedian and disability activist Tanyalee Davis observes: “Yeah, well I'm originally from Canada and I spent a lot of time in North America in general where, you know, there's so many laws and things that help people and you just have a lot more freedom. And coming to the UK it was always like, ‘You can't go there, you're disabled,’ you know, ‘that's against health and safety. Where's your carer?’ Like I can't be out by myself, I need to have a carer.” Later, one of the podcast’s hosts surmises: “It’s a very good point, and it’s the classic, there’s rules, there’s regulations, there’s environment, but it’s this attitudinal bit. Then you’re both saying it feels very different here to perhaps the States.”  For these speakers on disability, it is the attitudes, not the environment per se that indicates the difference in Morgan’s societal evolution or, more simply, progress.

Nonetheless, there is much to say that the disabled experience of the built environment is, to an extent, structurally formed. Extensive building codes and regulations are drafted and enacted by nations to mitigate, minimise or adapt the built environment to offer access to people with a range of disabilities. The U.K., for example, has issued statutory guidance totalling 155 pages across three PDF documents (covering dwellings, non-dwellings and later corrections to the approved documents) to ensure that owners and builders comply with building regulations for disability access. Those with experience of navigating the built environment while disabled understand well the ways in which a given building might obstruct their particular access to public and private spaces. Attending an on-campus job talk at Virginia Tech, for example, Twitter user @ashleyshoo snapped a picture of “surprise stairs” that she encountered (image 1). These stairs represent a physical impediment, making the room “obviously inaccessible” and barring access to the talk. Barriers to building access are thus understood to represent barriers to both working society and the academic community, and the structure of such buildings, as well as their “regular use” reflects an ableist society.

We should contrast this example with environments that are designed around maximising accessibility, such as a hospital. In another episode of “Ouch: Disability Talk” from 2017, Dr Hannah Barham-Brown discusses how the accessibility and design of hospitals enables the doctor (who is a wheelchair user) to attend to emergencies quicker than other doctors who must walk or run. Conversely, we can see that when a building is designed for access, and the assumption that accessibility needs are the norm, disability is no longer viewed as a lack or absence of ability.

When and Where is Disability?

Indeed, it has been observed that space travel and residence in Space is better suited for people with a wide range of disabilities, for differing reasons (Eveleth 2019). d/Deaf people, blind people, and those who use ostomy bags are all able to overcome major technical challenges (motion sickness, electrical failures, and defecating in space, respectively) that represent a burden to the normative, even idealised, bodies that tend to be selected to travel and live in micro gravity by space programmes (ibid.). Indeed, a key piece of furniture on the International Space Station is the treadmill, which astronauts must exercise for two hours each day in order mitigate the effects of bone muscle wastage in micro gravity (Physical Activity in Space, 2019). A large amount of the built environment of the ISS is therefore designed to solve the technical problems of the human body but, as these examples show, these problems may no longer exist in disabled bodies. Moreover, many physically disabled people are already well versed in harnessing technology to overcome problems in their environment. Thinking through the disabled body in space thus further complicates the relationship between the build environment and disability.

Turning towards examples in the developing world sparks further debate in how we might understand the roles of both the built environment and society in disabled people’s experiences. Whyte’s long term ethnographic work with disabled participants and their families in Uganda, a country with a strong reputation for progressive disability policies, illustrates how efforts to shift societal attitudes and include disabled members in a community ultimately does not have as great an impact on their “life projects” (i.e., landmark events and achievements) as might be presumed from a society-centric understanding of disability. One such life project is the acquisition and maintenance of housing: indeed, two of Whyte’s disabled informants directly link money earned through positions in local government with the purchase of a tin roof and the construction of their own house. Whyte’s blind informant compared the materiality of a thatch roof (which he cannot inspect for repairs) with the solid structure of a tin roof, ultimately concluding: “A house is better than money.” (Whyte 2020, p. S138). Nevertheless, the broader Ugandan social context is also important: the second informant wished to build her own house in order to gain a sense of independence from her husband and his younger, non-disabled second wife. Though for some disabled individuals, the structure and materiality of the built environment is both the medium and the message of ableism, for others it is the manifestation of a “life project”.

The privileging of societal attitudes in the disabling process over material conditions, including the role of the built environment, is further criticized in ethnographic analysis by Chaudhry (2019). Charting a rise in neoliberal attitudes to the body and disability in Indian politics and policy, Chaudhry illustrates how an World Bank’s project in rural India harnessed an empowerment model that disconnects the personal and structural by focusing on an evaluation of the change in “the life of the disabled person”. Under the assumption that the disabled individual will be more experienced and interested in helping other disabled people, they are made community leaders and organisers of disabled aid, effectively using the disabled to provide underpaid or totally unremunerated labour. With this model, policy makers can argue that they are providing income and meaning to disabled people’s lives, without providing meaningful structural changes, including improvements to rural infrastructure, that would have the potential to benefit the lives of a greater number of disabled people in India. The disability anthropologist is settled into a double bind: for while there is much truth to the fact that an ableist society creates disability through attitudes and behaviours, we must also confront the fact that the design and materiality of a building and its infrastructures can and does disable.

The relationship between society and infrastructure in the experience of the built environment also bears scrutiny from a disabled perspective. In her analysis of the ways in which people who have rheumatoid arthritis (a debilitating joint pain condition) negotiate their environments, Dokumaci (2020) coins the phrase “people as affordances”. Drawing on Gibson’s theory of affordances (1979), people as affordances is a frank reminder of the ways in which the built environment and infrastructure today either does not exist or ultimately fails for a range of disabled people. This results in a new sociality and complementarity between people (at least one of whom is disabled) and their environment as they find novel ways of engaging with each other and their surroundings. Thus it is that one informant places her grocery shopping down on a purposefully lowered countertop in the kitchen to await her husband who will place the items away: the informant, her husband and the lowered countertop all have their roles and relationships in this household (ibid., 103). Indeed, having rheumatoid arthritis herself, Dokumaci remarks on the relationship between her, her partner and her home: “The rest of our kitchen, our household and its physical organization, too, bear the blueprint of our shared pain and of ‘people as affordances.’” (ibid.) Likewise, Whyte shows how in some situations people (especially family members) may be considered preferable to more formal models of affordance and accessibility, and children are arguably the best accessibility insurance for disabled Ugandans. Whyte observes that one informant has parked her wheelchair provided by a Norwegian NGO “and her son carries her on a bicycle.” (Whyte 2020, p. S140)

Both Dokumaci and Whyte refer to “new kinship imaginaries” that transform a household when a member is discovered to have a disability. Drawing on long term ethnographic work with families encountering learning disabilities in their children (Ginsburg and Rapp 2011), new kinship imaginaries illustrate the vital role of parents in reconfiguring their social circles and expectations of the family’s future to better support and protect their children. Frequently parents begin to limit their social activities to within the home, even as they form a nexus of infrastructure that allows their own children access the outside world.

These adaptations and the new kinds of sociality they create are highly reminiscent of observations of “people as infrastructure” in anthropologies of the built environment. In her ethnography of a Vietnamese housing block, Schwenkel states that, in the event of water supply breakdown, “residents become the pillar of infrastructure” (2015, p.528). Moreover, she senses a deeper sense of solidarity amongst apartment-dwellers, centring around the hardships of their environment, forced to carry water up numerous flights of stairs to their apartments (ibid.).

Nonetheless, there is a key difference in temporality between the analyses of Dokumaci and Schwenkel. For Dokumaci, the disabled experience of people as affordances is one which ephemerally realises “accessible futures” in the present (Dokumaci 2020, p. S100). Schwenkel, on the other hand, refers back in time to the spectacular socialist infrastructure of Vietnam’s past building projects and emphasises the ambiguity and ambivalence with which is regarded in the present. Yet complicating the relationship between the “accessible futures”, infrastructure and disability is role of infrastructures in actively disabling people. It is feared that lead contaminated water supplies in Flint, Michigan in the U.S., for example, will result in learning disabilities for thousands of children (Gupta, Tinker & Hume 2016), while water contaminated with the solvent TCE, in Tucson, Arizona, has been connected with substantial birth defects (Taylor & Taylor 2006). Infrastructure then and now has the future potential to disable both the living and the not-yet-born. These three contexts are thus altogether diachronically opposed, illustrating the importance of the inclusion of disability narratives in the analyses of infrastructure and its limitations and breakdown within studies of the built environment.

Phenomenology, Embodiment and Disabled Experiences

As anthropologists explore phenomenological responses to the built environment, the disabled experience has considerable insights to offer the discipline. Helliwell’s critiques of visualism in her study of the Dayak longhouse illustrate the ways in which a privileging of the senses can be seen as a cultural bias in understanding how a given community relates to the built environment (Helliwell 1996). Commenting on their own personal experiences of house-hunting and selecting furniture for the home, two blind hosts of a 2018 episode of the “Ouch: Disability Talk” podcast explain the importance of sound in their housing and a strong dislike for places that are “echoey”. As Damon Rose and Lee Kumatat talk about their preferences, there is a certain hesitancy in their voices, and a careful selection of words to indicating ambivalence for the stereotypes of blind people and their sensory perceptions. Both blind commentators admit to some resistance to these stereotypes, particularly their appreciation of tactile sensations on furniture and walls, but also concede that there is ultimately some truth in them. Rose, for example, observes: “Yeah. … if anybody said to me, 'why don't you look at this? It's really nice. It feels really nice' I would sort of think oh god, they're thinking about me being blind. Feel - god, you think my life's all about feeling or something; what's going on here? And so I used to kind of reject that. But now I think I can openly say, yes I do buy things based on how they feel quite often.” As stated above, disability activists and anthropologists are wary of medicalizing the disabled body or mind at the expense of the individual experience of disability: disabled people are not, after all, their disability.

Themes of embodiment and phenomenology within the built environment take on new meaning when considering the role of the digital and its relationship to the built environment. In his extensive ethnographic research within the virtual world, Second Life, Boellstorff (2020) paints a vivid picture of how disability is equally mitigated and manifest in digital forms. Drawing on the Ethnographic Island project (a site of both enquiry and expression surrounding a range of disabilities set within Second Life and managed by Boellstorff, his researchers and participants), Boellstorff illustrates that many of his informants access virtual worlds precisely because their disability prevents or limits their participation in social interactions and spaces outside the home. Digital infrastructures thus become key to extending the self beyond the body, challenging a social constructionist reading of disability (Boellstorff 2020, p. S119). Nonetheless digital infrastructures themselves can serve to disable the participant. Second Life can be accessed through a number of different “viewers”, an interface which Boellstorff likens to an internet browser, which often have varying levels of accessibility. In general, the greater the range of flexibility in viewer features and functions, the more complicated and less accessible the viewer is (ibid., p. S114). In addition, virtual architecture itself might be considered disabling, as informants reported adverse effects of flashing lights or sound (ibid., p. S113) on those with post-traumatic stress disorder. Since virtual architecture is not bound to the physicality and materiality of the real world, workable solutions can include suspending the virtual buildings with “sound parcels” in the sky above the island, preventing the sudden and unexpected intrusion of noise. Virtual architecture is a source of contention but also self-expression: many of his informants choose to use the virtual built environment of Ethnographia Island, including buildings, furniture and interior decoration (such as paintings in a gallery), to convey the sense and meaning of embodying their specific kind of disability to other visitors to the island (ibid., p. S115). Disabled embodiment is therefore marked in both its presence and absence on Ethnographia Island.

Disability and the Covid-19 Pandemic

Thinking through virtual worlds and digital infrastructures and their meaning for the built environment takes on a strong sense of the universal in today’s times of Covid-19 global pandemic. For many around the world, confinement to the home through government lockdown measures has been a small taste of a wider disabled experience, with many spaces now inaccessible to them. In the U.K., there are some (including the actor Michael Palin) who strongly baulk against their designation for shielding (that is, total confinement to the home and social distancing for a proposed duration of 12 weeks), arguing that whole groups and identities will be conflated if the elderly are required to shield based on age and not physical health (Parveen 2020). From this view, inaccessibility is a result of state mandated confinement, not a material reality nor embodied experience. People in lockdown have begun to understand themselves as disabled by their environment (such as the social impacts of government directives and the material reality of Covid-19’s ability to spread quickly in large gatherings and public spaces) rather than by their bodies or mind.

It has also been observed that digital accessibility provisions for those in lockdown has been remarkably swifter now that it is no longer required by disabled people alone (Ryan 2020), indicating the fundamentally structural inequalities of the disabled experience in the built environment. Indeed, the entirety of this essay was inspired by my mother’s experiences continuing her educational courses of needlework during lockdown via video conferencing. Previously, she was required to travel miles across the country and stay overnight in a hotel to access courses and workshops with esteemed needlework teachers. Now, everything can be taught online, and my mother reports a higher degree of scrutiny over her work as the proximity of the web camera allows teachers pick up on finer details of technique than physically being in the room. Moreover,  the argument that digital infrastructures and remote access to other places - including theatres and museums, GP offices and higher education – are now only feasible for organisations because everyone needs them is counterposed with the surprising speed with which such digital workarounds were enacted. Indeed, claims that digital infrastructures are opening up “new” forms of sociality (such as birthday parties via Zoom) can be regarded as erasure of the disabled experience. Yet Covid-19 is a stark reminder that disability anthropology in the built environment is both universal and universalising: for anyone might enter disabled status at any point in their lifetime.

Conclusion

Disability anthropology has recently undergone a paradigm shift: one that acknowledges both the body and the mind, both the social and the material in the experiences of disability. In a sweeping literature review of the intersection of disability and anthropology, Ginsburg and Rapp (2013) advocate for a “Disability Worlds” view of disability within anthropology, illustrating that the disabled perspective is not only one of difference, but also commonality. This essay has posited that one can read disability through the built environment, even as one reads the built environment through disability. Just as themes of structuralism and constructivism, kinship and temporality, personhood and embodiment all jostle with each other for the anthropologist’s attention within the built environment, so too do they within anthropological discussion of disability. In light of today’s global pandemic, the disabled lens not only enriches analysis, but it is also vital for understanding every day human life and the built environment.

References

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