The Insensitivity of Sensitivity Studies

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THE INSENSITIVITY OF ALEXA VAUGHN

We live in a world where it took a pandemic to start thinking about stark access issues. The CDC’s recommendation to social distance and to keep a minimum of six feet between each other has taken precedence over providing enough space for Deaf people to sign, Blind folks to use canes or guide dogs, for neurodivergent folks to feel comfortable on public sidewalks, or for wheelchair users to move through any space at any time; and new barriers have continued to arise as restaurants create temporary, pandemic-safe dining options on public sidewalks.1,2 We live in a world where the medical model of disability still takes precedence over the transforming power of the social model – where we view the built environment as perfect and static, and disabled people as i> Ì Ì Li wÝi` À VÕÀi`] À>Ì iÀ Ì > the other way around.3 As designers and planners, we have the power to change this. What if we chose to create a world more adapted to disabled

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bodies, rather than forcing disabled people to adapt themselves to our designs?

As a Deaf woman,4 I have experienced life with the medical model p«> `i V ÃÌÞ ipwÀÃÌ > `. To me, this looks like: uncaptioned Zoom meetings, lectures, and events in which I am personally responsible for accommodating myself through thirdparty captioning. It includes awkwardly impossible conversations with masked mouths at the store or on the sidewalk, which prohibit my ability to lipread, but which I don’t want removed (!); and the refusal to use pen and paper instead of voice to describe things to me. We also can’t seem to shake the general and seemingly endless complaints of what we now call “Zoom fatigue.”5

“Zoom fatigue” is a phenomenon disabled people experience every day while being forced to accommodate ourselves to

SENSITIVITY STUDIES technology, everyday tasks, and built environments that were not created with us in mind. Designers and planners are still long at work in the creation of a barrier-free world, and the Disabled Community is exhausted by the constant need to ask for access or to otherwise adapt ourselves strenuously. The pandemic, with its focus on health and medical safety, has exacerbated this issue in many ways, by physically limiting disabled people’s participation in inperson studies, events, and activities.

While my personal access as a late-Deafened person has occasionally been improved through working from home and the increasing need to use text-based email, chat, and captioned video calls on platforms like Google Meets, which has built-in captions, others in the Disabled Community – > Ì Õ} i Þ Ài>« } Ã i Li iwÌ vÀ Ì i yiÝ L ÌÞ v Ü À } vÀ home – are in high-risk groups drastically affected by COVID’s presence, limiting their agency in the public realm. In

addition to the Deaf and Hard of Hearing folks being impacted by masks, it also includes the folks with immunocompromised systems and chronic illnesses who are not being prioritized for vaccination and cannot return to their everyday lives, folks on the neurodivergent spectrum who might be unable to pick up on social cues with masks covering faces or to keep their own masks on comfortably. Blind and DeafBlind folks who rely heavily on tactile elements in design and are Ü w ` } Ì i Ãi ÛiÃ Õ >L i Ì Ì ÕV anything with their bare hands. Despite these extra inaccessibilities brought on

by COVID, the Disabled Community is still tasked with collectively asking for our right to access, or we risk being excluded in conversations about technology, design, and access to public space. It is not, in fact, our responsibility to educate nondisabled people on how to be inclusive and accessible; but the burden continues to land on our shoulders as we shout (and sign and write) into the void.

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Today, it is still a radical choice to include disabled people in stakeholder meetings, design processes, and audits. Instead, when designing for disabled people, designers tend to rely on their personal comfort levels and assumptions over the lived experience and expertise of disabled people themselves. This denies the Disabled Community – the largest and most intersectional minority of over 1 billion persons, globally6 – its rights to agency and treats access to public space as a privilege to be granted by nondisabled designers and planners, in which their nondisabled voices and experiences are valued above those who are disabled.

In the early 1970s at the College of Environmental Design at UC Berkeley, Professor Emeritus Raymond Lifchez and Barbara Winslow led a radical course in which they brought physically disabled people into the studio, to critique and provide feedback to nondisabled architecture students’ studio projects.7 Today, in stark contrast – COVID or no COVID – designers, instead, rely predominantly on mimicking disability to test project and site accessibility (pre- and post-design). This testing process has long been called a “sensitivity study” and is still widely practiced today in landscape >ÀV ÌiVÌÕÀi > ` Ài >Ìi` wi `ð ÕÌ Ã this truly a sensitive or appropriate way to study site accessibility on behalf of the Disabled Community?

Sensitivity studies, or disability simulation practices, were (and still are)

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very common in rehabilitation research, driven by medical facilities aiming to bring disabled people back into society as close to society’s norms as possible.

Dr. Aimi Hamraie, in their book, Building Access, describes the phenomenon of the sensitivity study, perfectly: Disability simulation practices, in which nondisabled people would wear blindfolds or use wheelchairs for a day, were commonplace in rehabilitation research but increasingly challenged by disability activists, who claimed that these practices captured neither the adaptive resourcefulness of life with disability, nor the cultural dimensions of disability community.

Raymond Lifchez & Barbara Winslow’s user-led design practices, rich ethnographic data, and scenario planning reinforced the sense that simulation exercises were unnecessary if architects recognized disabled people as experts about their own lives, whose knowledge challenges what rehabilitation professionals or designers assume about disability.8 To reiterate Dr. Hamraie’s remarks, a sensitivity study is almost always conducted by nondisabled people on

behalf of disabled people, ostensibly Ì Ì i Li iwÌ v ` Ã>L i` «i « i° Sensitivity testing as nondisabled testers argue, is meant to put nondisabled designers “in the shoes” of disabled people. To do so, nondisabled sensitivity testers place themselves in wheelchairs and roll around the site to mimic physical disability, blindfold themselves and take up a tactile cane to mimic blindness, or (less commonly) wear earplugs to mimic deafness.

These tests take only a few hours in a day and nondisabled people are made to feel as if they have come to a complete understanding of the needs of disabled people by conducting the test, without having a single discussion with a disabled-identifying person.

Furthermore, they come to their own personal decision as to whether the site is complying to access requirements, or not, based on their simulated experience, which is very often an inaccurate experience.

Although the intent is good and meant to build empathy for disabled people, these simulations can very problematically affect public attitudes on disability and reinforce the medical model paradigm rather than the social model, and furthermore, reinforce feelings of pity towards disabled people and their experiences. This is due to the focus on hardships experienced in these simulations, rather than the often long yet successful process of adjustment that disabled people go through in living with their disabilities, which results

in their acclimation, normalization, and often, pride in their identity. These simulations are a clear-cut example of how nondisabled designers place their own assumption above true, lived experience.

As Dr. Hamraie puts it, if designers would instead choose to “recognize disabled people as experts about their own lives,”9 rather than rely on assumption through simulation, designers might make real, proactive change in the built environment and dismantle barriers.

Now more than ever, the Disabled Community needs nondisabled allies in the design and planning professions.

Nondisabled designers can become allies by consciously choosing to break out of their comfort zone and by reaching out to disabled people for participation in the design process.

This can be done through partnerships with local organizations and non«À wÌÃ] V Ãà à > ` L >À`à disability access, and by hiring disabled consultants. This can be taken a step further by hiring disabled designers to Ü À vÕ Ì i ÕÀ vwVià } ÌiÀ ° We should replace sensitivity studies or simulations with studies conducted by actual disabled people, and we should begin to name these studies plainly and clearly as “accessibility audits.”

Instead of simulating disabilities that a

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nondisabled designer does not identify with nor experience, why not simply and directly ask disabled people what they need; and then pull out a sketchbook or site map, camera, measuring tape, and digital level to proactively take note of inaccessible design elements within a site?

When thinking about access and inclusion in design, designers should not create anything for disabled people, without disabled people, because it is the Disabled Community who is most affected by these decisions. Designers can and should make it their goal to bring the Disabled Community and disabled experts to the table for each project, and above all else, center their needs and the removal of barriers to their experience of public space. Þ V Ã } Ì «À À Ì âi wÀÃÌ > ` listening and learning, nondisabled designers will clearly illustrate that they value Disabled Community members’ rights to public space and will create real, tangible change. The power of Universal Design (for both process and product) truly lies in its adaptability: nondisabled community members will > Ã ÃiÀÛi Ì Ài>« > ÞÀ >` v Li iwÌÃ when centering the disabled experience to create access.

Access is a legitimate civil right guaranteed by the Americans with Disabilities Act (ADA), to be granted to disabled people across the vast spectrum of physical, sensory,

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neurocognitive, and mental disabilities; thus, achieving access should be a prominent and attainable goal for every design and planning project.

As such, the ADA Standards should be met as bare minimum.

However, access is not meant to be a study of sensitivity or a metric of empathy, nor is it meant to appease charitable project goals. “Trying on” disability for the day is not accurate; it can be harmful and perpetuate false stereotypes of disabled people, no matter how good the intention Putting nondisabled opinions of what is accessible or inaccessible over the actual needs and opinions of disabled people is not sensitive, but completely insensitive. We cannot begin to create a more accessible world that accommodates as many people as possible until we include a diversity of disabled people in the process of its creation. It is our responsibility as designers and planners to begin to include disabled people in our `iw Ì v º` ÛiÀÃ ÌÞ]» > ` Üi V> ÕÃi this sense of responsibility to creatively drive our designs. If we choose to do this, we will create a better-designed and more inclusive public realm.

ENDNOTES CDC. “Social Distancing.” COVID-19: Your Health, CDC: Centers for Disease Control and Prevention, 17 Nov. 2020, https://www.cdc.gov/coronavirus/2019ncov/prevent-getting-sick/social-distancing.html.

1

Mailman, Erika. “As restaurants take over sidewalks to provide pandemic-safe dining, people with disabilities encounter barriers.” Health, Washington Post, 23 Aug. 2020, https://www.washingtonpost. com/health/coronavirus- sidewalk-seating-disabilitiesbarriers/2020/08/21/02ede6b8-e24c-11ea-8181606e603bb1c4_story.html.

2

Pineda, Victor Santiago. “Enabling Justice: Spatializing Disability in the Built Environment.”

Critical Planning 15 (Summer, 2008): 78-91.

3

Ì Ã >ÀÌ V i] ÕÃi `i Ì ÌÞ wÀÃÌ > }Õ>}i Ì describe disabled people (e.g., Deaf person, Blind person, Autistic or Neurodivergent person, physically disabled person). I feel that claiming disabled identity is empowering and a source of pride, which is particularly true for the Deaf community. With other cultural identities, the identity almost always V ià wÀÃÌ] > ` vii Ì i Ã> i Ã Õ ` Li ` i Ü Ì disability as it is just another form of identity (e.g., Black woman, Muslim man, queer person). Often, «iÀà wÀÃÌ > }Õ>}i à ÕÃi` ÃÌi>` ­i°}°] «iÀà with a disability, people with disabilities, PWD). This à V « iÌi Þ >VVi«Ì>L i > ` vwV > Þ ÀiV } âi` by the United Nations, but we should refrain from describing disabilities as impairments, disorders, or losses, which can carry negative medical-model connotations (e.g., woman with a hearing impairment / loss, child with Autism Spectrum Disorder, person V w i` Ì > Ü ii V > À®° Ì Ã > Ã Ü ÀÌ Ì } that we should avoid using outdated, derogatory language to describe disabled people (e.g., crippled, handicapped, handi-capable, deaf and dumb, the ‘R’ word).

4

See: Jiang, Manyu. “The Reason Zoom Calls Drain Your Energy.” BBC Worklife, BBC, 22 Apr. 2020, https://www.bbc.com/worklife/article/20200421-whyzoom-video-chats-are-so-exhausting.

5

6

World Health Organization (WHO), 2011.

See: Lifchez, Raymond and Barbara Winslow.

Design for Independent Living: The Environment and Physically Disabled People. New York: Whitney Library of Design, a division of Billboard Publications, Inc., 1979.

7

Hamraie, Aimi. Building Access: Universal Design and the Politics of Disability (p. 140). Minneapolis: University of Minnesota Press, 2017.

8

9

Ibid.

Some disabled folks have reclaimed derogatory language and made it their own, particularly with the term Crip, used by physically disabled people (e.g., Crip the Vote, Crip Elder); and Mad, used by mentally disabled, mentally ill, and some neurodivergent people (e.g., Mad Pride). The best way to come to the correct terminology is simply to ask the person identifying with the disability what their preference is, similar to asking for a person’s pronouns (she/he/ they/ze/xe, etc). Disability is a spectrum, and disabled people may identify in a myriad of ways and sometimes with several disabled identities.

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