Disability-Engaged Research: Capturing Invisibilized Access Needs
How do we measure disability?
Self-reporting is an unreliable metric of disability in a population. There are a variety of reasons why disabled people may not identify as such, and they are often linked to experiences of multiple marginalization. For example, a person may not feel entitled to claim disability identity because they have not yet received a diagnosis that validates the ways they are struggling, while poverty and medical discrimination (including ableism, misogyny, racism, fat antagonism and cissexism) are all factors that can contribute to delays in accessing diagnosis.
Some people may not feel safe or comfortable identifying with disability because of the violence or precarity they already experience due to other forms of oppression. Still others may simply not realize that their particular health conditions, support needs or struggles fall under the umbrella of ‘disability.’
Even those who do identify with disability may not recognize some of their access needs as such. For example, an informal survey of chronically ill and neurodivergent Twitter users last year revealed that even within disability-inclusive spaces, temporal access needs tend to be viewed as unavoidable personal limitations, rather than things that can and should be accommodated.
Looking at categories of experience
The United Nations Statistical Commission’s (UNSC) revised guidelines for disability data recommend assessing disability status through questions related to four functional domains: walking, seeing, hearing and cognition. They also note the possible utility of three additional domains: self-care, communication and upper-body functioning.
The assessment of disability through categories of experience rather than explicit self-identification is a useful starting point for considering how to approach disability-engaged design research. However, the specific categories identified by the UNSC were unsuitable for a number of reasons. First, these categories were defined with the goal of facilitating international and cross-cultural comparisons. While a discussion of their appropriateness for that purpose is complex and beyond the scope of this post, they are unquestionably too broad, too simplistic and too oriented to clinically accredited disability to resonate with the ways many product users and system stakeholders are likely to think and talk about their access needs.
A key limitation of these categories is their failure to adequately address access barriers and limitations that are likely to be associated with energy-limiting chronic illnesses and immune disorders. While walking, cognition and self-care may be presumed to cover the former, criteria for impairment in these categories are often designed with other experiences of disability in mind, and so they tend to be structured in absolute terms that do not capture the dynamic nature of many energy-limiting disabilities. For example, a person with myalgic encephalomyelitis may be able to walk 100 meters or take a shower without much difficulty in the moment, but they will be severely affected by that action for hours or days afterward. For someone like this, a question that asks, “are you able to walk 100 meters?” or “are you able to wash yourself?” can be difficult to know how to answer.
Moreover, none of these categories capture the temporal access barriers that tend to be associated with energy-limiting and dynamic disabilities, such as the challenge of making and adhering to plans and schedules. Similarly, they fail to capture many of the access barriers and needs that accompany immune disorders — such as food labeling, masking policies, availability of fragrance-free spaces and access to remote work — many of which can be expected to be particularly important in a pandemic work environment.
Finally, framing disability assessment in terms of functional limitations draws on a medical framework for thinking about disability, which raises a number of problems due to the entanglement of clinical violence with the social construction of disability. For disabled people who have experienced overmedicalization through the clinic — that is, those whose existences have been pathologized and thereby devalued on the basis of their diagnosis — functional language signals an understanding of disability that may be misaligned with their own and that of their community. This may create a rupture that could influence a survey participant’s confidence that their experiences will be understood and respected, and therefore their willingness to be open and vulnerable with their responses.
Conversely, disabled people who have experienced undermedicalization — that is, those who have been told their symptoms and struggles are psychosomatic, imagined or behavioral — may be inclined to underreport their access barriers and needs in response to functional language, because they are accustomed to messaging that their needs are irrelevant because others have it worse or because they simply need to try harder.
A case study: measuring invisibilized access needs on campus
On a recent project, I was tasked with assessing underrecognized disability experiences among faculty and staff at a postsecondary institution. To accomplish this, I asked respondents who did not already identify as having a disability or chronic health condition to rate their experiences with a range of common access barriers. I restricted these questions to those who did not identify with disability or a chronic health condition for three reasons:
- Asking disabled and/or chronically ill respondents to complete this section would make their survey experience impractically long for them, as they would be more likely to also complete one or more sections related to the formal workplace accommodations process
- Since disabled and/or chronically ill respondents would be more likely to complete sections related to the formal accommodations process, this section could be redundant for them, as they would also be asked later on to discuss the accommodations they sought
- The primary function of this section was to capture experiences of disability that specifically would be missed through self-identification, and responses from people who already self-identify with disability or chronic illness were not necessary to accomplish this
I provided the following guidance and definitions for the rating scale, to encourage respondents to assess their experiences strictly in terms of their personal impact, without making guesses about what is “normal” for other people:
The next few sets of questions will ask you about how certain things in your day-to-day environment affect you. We will be asking about things you probably encounter at work, but they may affect you outside of work as well.
Please answer regardless of whether you consider yourself disabled, or whether you have a diagnosed long-term health condition. We are interested in how these things affect the experiences of everyone responding to this survey.
We’d like you to think about how these things impact you when you encounter them, regardless of how often you encounter them, or what access supports or workarounds you have in place right now. If something doesn’t always impact you the same way, think about the worst impact it has on you and choose that option.
There are five options you can choose from to describe how these things impact you. They are:
Positive
This increases my comfort and/or my ability to participate in day-to-day activities
Neutral
This doesn’t affect me; I don’t tend to notice it
Slightly negative
I notice this in a negative way but I wouldn’t say it bothers me
It doesn’t affect my ability to participate in day-today activities
Moderately negative
It causes me pain or discomfort (physical, emotional or sensory) and/or
It interferes with my ability to participate in day-today activities as fully as I would like to
Very negative
It causes me debilitating pain and/or
It is dangerous for me and/or
It prevents me from participating in day-to-day activities
There is also a sixth option you can choose to say a certain thing is irrelevant to you, that is, if it’s not something you encounter in your day-to-day life, or if it’s something you’re not familiar with.
I asked about forty possible access barriers that one would be likely to encounter on a typical postsecondary campus (a list developed in consultation with disabled-identifying faculty at this and other institutions), distributed across the following five categories:
Sensory
including barriers related to chronic pain and fragrance sensitivity
Temporal
including barriers related to dynamic and energy-limiting disabilities, as well as executive dysfunction
Mobility/Exertional
including barriers related to physical fatigue
Cognitive
including barriers related to executive dysfunction and language processing
Social/Communicative
including barriers related to immune disorders and normative social interactions
The constituents of that last category may seem disparate, but what I realized through enumerating and thematically coding common potential access barriers was that barriers common to the experiences of immunocompromised people are indeed primarily social and communicative, such as implementation of and adherence to masking policies, and the provision of ingredient lists for food, particularly at events.In fact, this apparent discrepancy is an example of why it is useful to take a needs-and-barriers approach when trying to characterize disability at a population scale, rather than making assumptions about categories of experience, which may miss important nuances.
I coded responses of “moderately negative” or “very negative” as access needs. More than half of the people who responded to this section of the questionnaire indicated that they experience at least one access need. Some commonly reported access needs appeared to be connected to respondents’ roles as parents or caregivers, while others represented general hazards, such as icy or snowy paths.
It is likely that many of the respondents who reported access barriers would not be considered disabled, when considering disability as a form of global marginalization that pervasively shapes a person’s experiences of, and participation in, society. It is also likely that at least some of them would.
This is reinforced by the roughly 27 percent of respondents who indicated that despite reporting one or more access need, they did not identify with disability or chronic illness because it had never occurred to them that they could. A further 6 percent responded that they didn’t want to think of themselves that way, while 8 percent reported that they were concerned others might view them as less competent if they did identify as disabled.
That’s at least 20 percent of all respondents to the survey whose experiences substantially overlap with disability and chronic illness, and whose experiences would not have been captured by a survey relying on self-identification of disability.
