I spent yesterday afternoon and evening in urgent care because I’d been dealing with intractable craniofacial pain that had gotten so bad it had triggered a migraine and was making it difficult to move at all.

Why am I sharing this?

Because I think the strategies I used to access the care I needed (and the fact I needed to use them) are illustrative of the incredible systems thinking skills that chronic patients develop, the service and system design failures that force that skill development, and the leadership role that chronic patients should be playing in healthcare transformation organizations.

Part 1: The Pathological Gaze Is Bad and You Should Feel Bad

Part of the reason it is so difficult for patients with invisibilized illnesses to access diagnosis and care is that modern clinical medicine relies heavily on the pathological gaze, or “knowing through looking.” A disease is “organic” if we can find (and are willing to identify) a tangible pathology using a biopsy, a scan, a blood teset or a genetic sequence. When we can’t, it is labeled “functional” — and over the past 100 or so years, “functional” has come to be a synonym for “psychosomatic.” (Thanks Freud!)

Clinicians also acknowledge, albeit indirectly, the inefficiency of this approach: when discussing poorly understood illnesses such as myalgic encephalomyelitis and long Covid, they point to other conditions such as multiple sclerosis and lupus which, until relatively recently were not legible to the clinical gaze and were therefore poorly understood. Their solution to the ongoing problem of clinically invisible illnesses is to advocate for more research, to make these illnesses legible by finding the pathological signs by which clinicians can recognize them. They argue that we solved earlier medical mysteries by “following the science” and suggest that our response to contemporary medical mysteries is anomalous. But these arguments oversimplify the histories to which they refer.

They neglect the fact that, until the pathological signs of diseases like multiple sclerosis were identified, people did indeed receive functional and psychosomatic diagnoses, like neurasthenia and conversion disorder. They neglect that people with these conditions continued to receive psychosomatic diagnoses well after their pathological signs were identified and diagnostic criteria were standardized. They neglect that presence of a pathological sign does not guarantee clinical recognition-that still depends on whether a clinician orders the right test, how a technician performs and interprets it, and what conclusions the clinician draws from the technician’s interpretation. It also depends on luck, because false negatives can happen.

Finally, they neglect that healthcare is a capitalist enterprise, whether it operates in a free market system or is administered by a capitalist state, and that the process of getting from pathophysiological hypothesis to clinical costs an immense amount of time and money. This has a couple of major consequences. First, pathophysiological research tends to be conservative; the hypotheses that get funded and therefore explored are those that build upon established knowledge. This leaves little room for radical innovation of models and methods. Second, it disincentivizes research into the pathophysiologies of hard-to-visualize illnesses. When an illness requires entirely new methods and new technologies in order to find its pathological signs, it’s much more cost-effective just to call it biopsychosocial and then quietly bracket the “bio” part and suggest patients focus on diet and lifestyle and changing their thought patterns.

Except that in the long-term it isn’t. Setting aside the injustice and harm done by primarily psychosocial responses to somatic illnesses (which, to be clear, is a BIG thing to set aside), it’s an economically disastrous approach in the long-term. Consider, for example, the Great Resignation of early 2021. Most coverage emphasized shifting priorities as a primary driver of voluntary resignations among the labour force. What was not widely acknowledged was the fact that record numbers of people were reporting an inability to work due to illness.

Figures released in May 2022 by the United Kingdom’s Office of National Statistics and the Bank of England indicate that the number of people unable to work due to long-term illness had increased by one-fifth since the start of the pandemic, and is the highest it has been in the past thirty years. In Canada, the number of people who reported they were not looking for work due to illness during the second quarter of 2022 was 31 percent higher than it had been during the last quarter of 2019. This was second only to the record high that occurred during quarter 2 of 2020. In August 2022, a report from the Brookings Institution estimated that 3 million workers in the United States-1.8 percent of the country’s workforce-were unable to work due to long Covid.

Part 2: Patient Gaze, or Diagnosing Without Looking

Most chronically ill people are not clinicians, and we do not have access to the highly regulated and gatekept tools that scaffold clinical diagnosis. We cannot order their own CT scans or perform their own blood tests. Instead, we use literature reviews, systems thinking and inductive reasoning to work through a self-diagnostic process that generally involves 5 steps:

1. Embodied Experiences
2. Symptom Vocabulary
3. Targeted Research & Pattern Recognition
4. Etiological Model
5. Possible Treatments

In the case of my pain yesterday, that process looked like this:

1. Embodied Experiences

• This is different from my usual migraine symptoms (less light sensitivity, more motion sensitivity, more localized head pain)
• This is not responding to any of my rescue meds or self-management treatments
• The pain is radiating along a specific path starting in my neck
• I can trace the path by pressing on my scalp and feeling where it is tender

2. Symptom Vocabulary

Based on the tenderness, the radiating nature, the fact it won’t respond to heat treatment, gentle relocation of my shoulder, ribs and cervical vertebrae,* muscle relaxants or triptans, this is nerve pain.

*I have a connective tissue disorder and this is part of my usual self-management protocol.

3 & 4. Targeted Research, Pattern Recognition & Etiological Model

Based on the fact that my shoulder was out, I probably have a nerve that is flipping out due to being compressed either by the joint itself, or by the muscles that seized up in response.

Having traced the path of the pain, and compared it with anatomical diagrams, I’m pretty sure the issue is within one of the occipital nerves, most likely the greater occipital nerve. That would make this occipital neuralgia.

5. Possible Treatment

Based on what I already know about nerve pain as a result of my experience as a chronic patient, I suspected a nerve block might be in order. Armed with the clinical language of “occipital neuralgia” I checked out possible treatments and sure enough, the first line treatment most commonly mentioned is a combination nerve block-steroid injection.

Part 3: Strategic Communication, or Actually Getting the Care I Needed

Arriving at a plausible etiology and possible treatment is barely half the battle. Chronic patients have to be extremely tactful about how we communicate the insights we generate through this process. We need to balance being specific enough to effectively communicate what is happening and what we need, with being vague enough that we won’t be dismissed as having “spent too much time with Dr. Google.” (Never mind that Drs. Twitter, Wikipedia, Google Scholar and I are 6-nil going head-to-head with the Ontario healthcare system on actually diagnosing the chronic illnesses I have been dealing with since the age of 4 and identifying effective treatments for them.)

Seeking emergency treatment for chronic pain, especially if you are a marginalized patient, is especially risky because there is a strong chance that you will be labeled as “just” drug-seeking, attention-seeking, or both. (Never mind that if someone has substance use or psychiatric disorder that’s causing them excruciating pain…that is still an urgent medical issue that deserves urgent and compassionate care.)

The scripts I used yesterday were:

“I think I have a pinched nerve, this is something that’s happened to me before, and I’m hoping I can get a nerve block or whatever you’d recommend.”

“I have a connective tissue disorder so when things slip out of place or muscles seize up, they can end up pinching nerves. It’s happened a few times in my neck and this feels the same way as last time.”

“It started last Thursday, it’s gotten a bit better and worse at times but it’s never fully gone away. I’ve tried my muscle relaxants and triptans, as well as heat treatment and topicals and some of them have taken the edge off for a few hours but they’ve not been very effective.”

“It started out as pain radiating from the back of my neck and around the side of my scalp to just behind my eye. After a while I started getting more typical migraine symptoms and the triptan helped with those but not with the original pain.”

The reasons for choosing these scripts were as follows:

• Try not to be appear too confident about my self-assessment
• Emphasize that this is an ongoing problem (without mentioning that it’s not as yet a formally diagnosed problem)
• Emphasize my relevant diagnosed medical history
• Be as specific about the site and quality of the pain as I could be
• Be specific about duration and about what it had not been responsive to
• Specifically mention the treatment I was pretty sure would help while taking care to say that I was open to other options

These scripts are by no means foolproof; they still depend on the mood and prejudices of the on-call staff, which may in turn be affected by whatever else is going on in the clinic that day. I consider myself lucky that my local hospital system has a somewhat unusual arrangement, where one of the hospitals houses an urgent care clinic. Unlike most walk-in clinics, they are equipped to do more advanced tests and procedures (such as a nerve block), which allows me to avoid the ER where going in for chronic pain gets you compared to the person having the massive heart attack and puts you at greater risk of being judged for taking up resources you don’t technically need or deserve (after all, you’re not going to die from that migraine, even if that dying might actually feel preferable).

While recognizing that chronic patients shouldn’t have to play 4d chess in order to access the care they need to participate in their own lives, it is also worth recognizing that the fact that we have to do this makes us experts in communication and information design.

The Moral of the Story

Healthcare systems all over the globe are in crisis. This is unquestionably due to deliberate, systemic neglect from governments motivated by profit. As any chronic patient can tell you, it is also due to the fact that healthcare systems have NEVER been equipped to diagnose and treat us. We have always been a “bad investment” for healthcare, whether we get framed as an unacceptable risk by private insurers, or as unacceptable drains on the public wallet.

Here are just a couple of examples that I come back to whenever I’m in a POTS flare.

(Get it? They raise my blood pressure, is what I’m saying.)

Healthcare systems are in desperate need of change. Meanwhile, chronic patients want nothing more than to apply the insights that we have gained through years of suffering and fighting, so that no one else has to go through the same thing. I believe that handing us the reins is exactly the change that is needed.

This is the third part of a series on cognitively accessible survey design.

The first part of this series discussed the process of optimizing and considered how understanding and designing for survey respondents’ motivations can increase your chances of receiving optimized responses. The second part looked at some common access barriers that survey respondents may encounter when optimizing, and suggested some ways to mitigate them.

This third and final part will look at some factors that can affect the readability of a questionnaire as well as common access conflicts that may arise, and suggest some workarounds for both.

Readability

There are a variety of factors that can make questionnaires difficult for respondents sensory processing or cognitive access needs to read.

Likert scales can pose difficulties for screen reader users. Screen readers parse these questions as tables, which means that they need to be marked up in a particular way to create a logical reading order. Depending on the survey platform you are using, it may or may not be possible to ensure that this format is screen reader-accessible.

Even if it is, Likert scales can also be difficult to visually parse for some people who are Autistic, dyslexic, or who have eye movement disorders. These respondents may struggle with visual tracking across rows or differentiating between rows. This can make it difficult for them to be sure their ratings are corresponding with the right items. This in turn results in increased cognitive load for respondents, and can produce inaccurate survey data.

Instead of using typical Likert scales, consider using a series of single-select multiple choice questions to capture the same information.

People who experience access barriers related to readability may struggle with parsing forms in general. For these users, it is helpful to isolate distinct form elements using visual signifiers and blank space. One strength of digital forms, including most survey platforms, is the option to create page breaks.

Place question blocks, or even individual questions, onto separate pages. Used bold and italic text, headings and bulleted lists to visually differentiate explanatory information, such as when providing explanations of rating criteria.

When breaking up a long question block across multiple pages, it is a good idea to repeat relevant information about the question, such as context or explanations of ratings frameworks, at the top of the page. I provide an option at the start of the survey that respondents can select to forego these repeated explanations, if they prefer a more succinct experience.

Balancing Access Conflicts

Many considerations that can make a questionnaire more accessible for some respondents have the potential to pose access barriers for other respondents. It is good practice to try to identify and eliminate or mitigate these barriers.

Designing question blocks with a focus on supporting respondents to express themselves fully can result in a very long questionnaire which requires a greater time commitment and more cognitive effort to complete. This can be mitigated by making expressive questions optional, and separating them into distinct, clearly-identified blocks, on separate pages, so that respondents who want a more succinct experience can easily skip over them. Respondents should be informed of this possibility in the introduction to the questionnaire.

Repeating definitions, explanations and contextual information at the top of question blocks can be helpful for users with executive or cognitive dysfunction. However, it can also be distracting or tiring for respondents who are using screen readers or who struggle with visual processing. One way to navigate this conflict is to provide a question at the beginning of the survey allowing users to indicate whether they would like explanatory information to be repeated at the top of each page or question block, and to implement survey logic so that if they select no, the survey will skip over those repeated sections.

Similarly, some respondents may benefit from having detailed explanations about certain terms and concepts, while others may find this overwhelming. This can be addressed by including a question at the start of the survey asking whether they prefer a more comprehensive or concise survey experience, with survey logic that skips over the detailed explanations if they choose the latter.

It is not realistic to assume that any space, event, document or interface can be made “fully accessible,” not only because of access conflicts, but because any space, event, document or interface may be fundamentally inaccessible to someone. Therefore, while care should be taken to make a project’s primary mode of delivery as accessible as possible, it should also be recognized that there may be people who require an alternative mode of delivery, such as a verbal or email interview. These should be offered whenever possible, and their availability should be made known to prospective participants during the recruitment phase.

This is part two of a series on cognitively accessible survey design.

The first part of this series discussed the process of optimizing and considered how understanding and designing for survey respondents’ motivations can increase your chances of receiving optimized responses.

This post will look at some common cognitive access barriers that respondents may encounter when optimizing, and suggest some ways to mitigate them.

To recap, optimizing refers to the ideal cognitive process through which a person responds to an item on a questionnaire. It is generally accepted as a series of four steps:

• Interpreting a question and deciding what information it is asking for
• Remember and reflect on relevant opinions and/or experiences
• Synthesize those thoughts into a single conclusion
• Determine which of the available responses most closely matches that conclusion

Cognitive Barriers to Optimizing

The first step of optimizing constitutes a significant potential access barrier for neurodivergent survey participants. Many neurodivergent people find it especially challenging to attribute meaning to language used by other people. This can be due to a number of factors, such as use of metaphorical or imprecise language, complicated sentence structure, or uncommon vocabulary.

Some neurodivergent people frequently identify multiple possible meanings when reading a statement or question, and struggle with determining which is the intended meaning. This can substantially increase the cognitive burden and energetic cost of responding to a questionnaire, and some respondents may find that they are completely unable to respond to some questions. It can also create a rupture in trust with marginalized respondents who are accustomed to being misunderstood and misinterpreted.

Closed-ended questions, which require respondents to choose from a limited set of predefined responses, can also be an access barrier. Not only do they require another round of interpretation, but the available response options may fail to account for the distinct ways that neurodivergent people may experience and interpret certain things. The latter may also be a problem for other people whose experiences and perspectives are routinely marginalized, and it creates a risk of rupture with participants who are motivated by a desire for self-expression, recognition and understanding.

Techniques to Support Interpretation and Understanding

The following are approaches that can help facilitate interpretation and understanding:

• Use common vocabulary and simple sentence structure whenever possible
• Avoid use of metaphorical or idiomatic language
• Where uncommon or idiomatic vocabulary is needed for a particular reason, an explanation of its meaning should be provided
• Be precise with your language: when the wording of a question or a response option has multiple possible interpretations, alternative wording should be chosen or an explanation should be provided
• Where arbitrary frameworks are used to characterize subjective judgments, the parameters of the framework should be explained (for example, when asking respondents to “rate” an experience, each possible rating should be defined and the way that respondents are expected to assess their experience should be explained)
• Write-in, “don’t know,” and/or “uncertain” options should be provided for all closed-ended questions unless there is a specific reason they need to be excluded
• Open-ended questions should be provided for each question block, to allow respondents to add relevant context and/or clarify their interpretations of questions
• Include a back button so that respondents can revisit and amend previous answers if their understanding changes in responses to subsequent questions

Necessary Unnecessary Questions

Conventional wisdom says that every question in a questionnaire must serve the purpose of providing data that researchers can use to answer their research questions. [Vannette 2014] This is predicated on an assumption that the sole purpose of the questionnaire is to gather usable data (where the characteristics of ‘usability’ have already been decided).

However, if it is expected that a substantial number of respondents will be motivated by a desire for self-expression, the questionnaire must fulfill a second purpose: providing opportunities for that self-expression. Moreover, if respondents are being asked to reflect on experiences of marginalization, including questions that can make them feel recognized and understood may be useful both in enhancing their motivation and, even more importantly, in making the survey a positive experience for them.

With this in mind, question blocks dealing with these topics should be designed with the goal of facilitating an opportunity for respondents to provide a full and nuanced account of their experiences, rather than deciding in advance what questions will provide you with the most direct and concise answers to your research questions. This can be supported by one of the tactics discussed in the first part of this series: structuring question blocks to create a narrative flow that begins with concrete experiences, progresses to participants’ impressions of those experiences, asks for their interpretation, and offers an opportunity for contextual clarification.

This is part one of a series on cognitively accessible survey design.

A Survey Is a User Experience

A questionnaire is a tool for researchers to gather data in order to answer research questions, but it is also both an interface and an experience for respondents. Best practices for questionnaire design resemble best practices for user experience design, in that they are oriented toward considering how a user is likely to perceive and interpret aspects of an interface, and how their interactions with each part of an interface will impact their overall journey — what and how they do and experience things within it.</p>

It is still somewhat uncommon for user experience guidance to consider how disabled people may experience the world in non-normative ways. It is even less common to encounter such consideration within the literature on survey design.

In this series of posts, I will be discussing some established principles and best practices of both UX and survey design while rethinking others through a lens of disability ethnography. This first post will look at some approaches for understanding marginalized participants’ motivations and supporting them to optimize their responses.

Optimizing and Motivation

Optimizing refers to the ideal cognitive process through which a person responds to an item on a questionnaire. It is generally accepted as a series of four steps:

• Interpreting a question and deciding what information it is asking for
• Remember and reflect on relevant opinions and/or experiences
• Synthesize those thoughts into a single conclusion
• Determine which of the available responses most closely matches that conclusion

This is a cognitively, and potentially emotionally, demanding process. Therefore, a questionnaire must be designed to make the cost of optimizing worthwhile for its respondents. Doing this requires an understanding of respondents’ motivations for participating.

When a survey population is predefined, if possible, it is good practice to conduct small-scale, preliminary qualitative research to identify respondents potential motivations for participating. However, when this is not suitable or possible, it is reasonable to assume that marginalized participants may be motivated by any or all of these three common factors:

• A desire to express oneself, to be understood and recognized
• A desire to effect change in policies and practices
• Monetary compensation

In my practice, I adopt the following five tactics to ensure that my surveys are aligned with these motivations.

1. Structure questionnaires to create a narrative flow, beginning with concrete experiences, progressing to participants’ impressions of those experiences, asking for interpretation, and offering an opportunity for contextual clarification

When the questionnaire deals with a procedure or other sequential experience, it is useful to identify the possible user journey(s), and structure the questionnaire according to these, offering branching logic to accommodate each possible journey and following the experiences, impressions, interpretations and clarification approach for each step of the journey

2. Provide opportunities for respondents to explain their experiences and ideas in their own words, with optional open-ended questions for each section

This unquestionably adds time and complexity to the data analysis stage; however, if feasible within project parameters, it is a worthwhile tradeoff to establish trust with marginalized respondents who may be accustomed to being misunderstood and misinterpreted

3. Take care to explicitly acknowledge and validate the possibility of respondents’ pain or distress

This can be accomplished through content notes and informed consent language that makes clear what respondents can expect from the survey and that they are not obligated to complete the survey if it causes them distress, as well by including additional content notes at the top of question blocks that may be uncomfortable or distressing, and by making potentially distressing questions optional to answer

4. Respect the expertise and compensate the cognitive and emotional effort expended by respondents

Like all workers, survey respondents will put in the most effort when they are compensated fairly for it. As an aside, it’s worth keeping in mind that as researchers, we are learning from our respondents and asking them to share their expertise with us. Thank them for that rather than “their time.” And consider how you can go beyond lip service and demonstrate that you truly recognize and respect their expertise.

5. Cultivate a pool of respondents through long-term community engagement

One way to show respect for the lived and embodied expertise of research informants is by making your research an ongoing dialogue with them. Knowledge translation and research dissemination is an important recruitment tool that not only increases awareness of projects while recruitment is happening, but increases the likelihood that prospective respondents will be interested in the research and motivated to provide optimized responses.

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:

1. 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
2. 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
3. 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.

It’s often a lot easier to explain what not to do when it comes to disability engagement in research and design, than to tell people what they should be doing. Even though an estimated one in five adults in the United States are disabled, and the design field has made in-roads when it comes to (certain kinds of) web accessibility, there still aren’t a lot of examples to point to of what “good” disability-engaged design research and UX looks like.

Adding to this challenge is that doing good disability engagement in design often means making changes to established methods and processes, which is one thing when you’re working as part of a small startup team, and something else entirely when you’re working with a cross-functional team at a large enterprise that is navigating countless other projects, procedures and organizational priorities.

In my work leading research at The Disabled List, I spend most of my time walking this particular tightrope, with the added challenge of being an external consultant who has to quickly familiarize myself with all of those organizational dynamics in order to provide useful advice.

Drawing on my experiences managing a number of research projects across the tech, creative and educational sectors over the past year, here are 10 concrete things designers and researchers can do to make their engagement with disabled people more effective in 2023.

1. Involve Disabled People From the Very Beginning

That means bringing them before you have locked in your design problem or research questions. “Co-design” is supposed to mean that community members, such as disabled people, are treated as collaborators. But these community members are often only brought in to collaborate once the problem, scope and research questions of a project have been defined. They are brought in to supply data, but are rarely invited to analyze it, or critique and refine the synthesis. That isn’t genuine collaboration; it’s using them to rubber stamp the design team’s preconceived interpretations about what their lives are like and what they need.

This approach isn’t just disrespectful to disabled people and their unique expertise; it leads to wasted time, effort and resources. When nondisabled designers and researchers decide what problems disabled people need them to solve, they end up creating (and recreating) useless products that ultimately don’t get taken up.

2. Design Against Ableism, Instead of for (or With) Disability

In my practice, I’ve started advocating for something I call Designing Against. Most often when we talk about socially-oriented design, we talk about designing “for” something. Designing for disability. Designing for social innovation. Designing for health. Designing for justice. Designing for stuff we generally acknowledge is good and virtuous.

This approach does two things. First, it abstracts design problems from the social systems that are creating them. And second, it turns into a kind of feature creep. Our tendency when designing “for” is to try and solve problems by building something new and in doing so, we end up adding more and more features to the systems we’re working in and on, without addressing the structural issues that are causing problems in the first place.

When I say Design Against, I mean: whatever social issue or group you want to design for, identify the structural factors that are really, materially shaping those problems and design against those instead.

Instead of designing for trust, design against abuse and exploitation. Instead of designing for health equity or patient empowerment, design against medical racism and ableism and fat antagonism and misogyny. Design against the clinical gaze that says the only way to understand a sickness is to find the pathological lesion causing it. Instead of designing for rest, design against the things that prevent people from resting. Design against poverty and housing instability and hostile architecture.

3. Start Thinking About Power

This is probably the scariest entry on the list because the work we do, and the institutions and corporations we do it for, are all structured by power. And challenging established power structures is undeniably risky. But it’s also a necessary part of doing design and research that actually yields results, especially if you’re hoping for results that will draw in marginalized and neglected groups of users and customers.

One way to take the fear out of incorporating power into your design research framework is to recognize that thinking about power is really just thinking about systems. Power is what shapes the actions a person can and cannot take within a particular system. Understanding the range of possible interactions and their outcomes within a system is a crucial part of trying to create solutions for that system, so think of power analysis as part of your systems design toolbox.

4. Stop Ignoring Invisibilized Disability

I’m going to ask you to do something at this point. I’d like you to pause for a minute and write down as many example of design for (or with) disability as you can think of. It doesn’t matter how exactly they’re classified — universal, inclusive, barrier-free, adaptive, assistive — just whatever you can think of that’s a designed product, service or environment, created with disability in mind.

Next, I’d like you to write a second list beside your first one, identifying the categories or types of disability that were probably the focus of each of the examples in your first list. Again, don’t worry about being precise or getting the categories “just right.” Just write down who you think the designers of these things probably had in mind while designing them.

I’m going to make a guess here that most of the examples most of you came up with focus on what I would call hypervisible disabilities. The kinds of disabilities that are subject to overmedicalization — that society overall looks at as an inherent functional limitation. And what’s probably not very prominent on your lists are examples that address the distinct access needs of people whose disabilities tend to be invisibilized by the clinic and by society. People who experience chronic pain, chronic fatigue and brain fog. People who experience altered consciousness. People who struggle with temporal, rather than spatial access barriers. People with allergies, and environmental and chemical sensitivities.

There are an estimated 145 million people worldwide with long Covid, more than 200 million with fibromyalgia, more than 50 million with epilepsy, 17–24 million with myalgic encephalomyelitis and 3 million with narcolepsy. These are just a few of the clinical diagnoses that tend to be associated with invisibilized disability.

We call invisibilized disabilities “invisible” not because they are hard to recognize or easy not to notice. We call them invisible because society chooses not to recognize them. Invisibly disabled people are painfully familiar with being told that they are imagining or exaggerating their illnesses, or that they are causing them with poor lifestyle choices. And despite making up a substantial proportion of the “1 in 5” figure that is often cited as a reason for governments and business and third-sector organizations to care about disability, they are profoundly neglected even by brands that have sought to explicitly include disability in their marketing and product strategies.

5. Think About Accessibility in Terms of Time and Energy, Not Just Space and Matter

When we think about designing accessibly, we think in terms of spaces and physical things. One of the most effective ways designers could start engaging invisibly disabled people in their practices would be to start thinking about accessibility in terms of time and energy as well. Invisibly disabled people disproportionately deal primarily with things like fatigue, pain, hypersomnolence, cognitive and executive dysfunction — things that affect how you move in time, and how you interact with tasks and actions that take energy, rather than how you move in space and interact with physical objects.

Twitter has become a popular gathering space for chronically ill people, and a site for the production of chronic illness community and culture, in large part because of its design affordances. Its “digital public square” ethos is oriented to discoverability which makes it useful to those who are highly isolated in the physical world and not yet part of an established digital community. (As opposed to Facebook, for example, which consists of more discrete, insular spaces, where discovery happens more through established networks or targeted searches.) Its hashtags and trends function as “affiliative objects” that coordinate relational dynamics and thus facilitate knowledge-sharing and organizing. Its textual, brief, and mostly asynchronous format makes it uniquely accessible to many chronically ill folks with sensory, temporal and cognitive access needs, as well as neurodivergent and multiply marginalized folks who may be less comfortable with communicating through audiovisual media.

To create products and services that meet the needs of invisibilized disabled people, ask questions like:

• how can I provide access without requiring a person to do something or be somewhere at a specific time or within a specific timeframe?
• what are the steps involved in this interaction (including “hidden” cognitive steps) and how can I eliminate some of them?
• how does this interaction require users to expend cognitive or physical energy and how can I reduce those requirements?
• how can I limit the time this interaction requires from users?

6. Offer Remote and Asynchronous Facilitation

Design processes themselves are often temporally inaccessible. Interviews, workshops and co-design sessions have the default expectation that participants will be present in a certain digital or physical space, and engaging in physical or cognitive tasks, during a specific time period. Even recruitment processes involve a degree of temporal accessibility because they require a person to come across a call for participation “in time” to respond to it.

Consider how you can incorporate asynchronous modes of participation into your design processes. Can you set up a mailing list so that people interested in future co-design or research opportunities can be notified directly? Can you build temporal flexibility and deadline extensions into your timeline from the beginning? Can you offer to do interviews over instant messaging or email? Can you run a focus group on Slack or Teams chat? Can you provide workshop materials and interview questions in advance so that your participants have extra time for cognitive processing?

7. Be Deliberate About How You Categorize / Segment Disability

When design researchers decide to engage with disabled participants, one of the first questions they ask is, “What kind of disability do you have?”

This question — and the range of options provided to respondents — is powerful. It tells respondents how the researchers are thinking about disability. It also structures the data that researchers will be working with, shapes the conclusions they will draw, and the design choices they will make. Most of the design screeners and surveys I encounter offer up some version of the following categories for respondents to sort themselves into:

• Physical Disabilities
• Visual Disabilities
• Hearing Disabilities
• Mental Health Disabilities
• Intellectual Disabilities
• Learning Disabilities

There are many variations on this basic classification system. For example, “physical disabilities” may be broken down into “mobility disabilities” and “chronic illness,” or “learning disabilities” may be replaced by “cognitive disabilities” (which can be interpreted to include a much broader range of experiences, such as acquired brain injury or ‘brain fog’ resulting from chronic illness). But this variability rarely corresponds in any logical way to the apparent objective of the project.

I approach segmentation of disability by drawing on ethnographic and autoethnographic knowledge of disability to compile a list of access barriers that are likely to be relevant to the project I am working on. This can involve considering existing or proposed features of the service, system or product in question, and the potential access barriers they pose. I then thematically code these barriers into categories. Finally, I consider how to translate these categories into language that will be both concrete and flexible enough to resonate with the lived experiences of respondents when I distribute my screener. This means that, unless I am specifically concerned with how people identify, instead of asking “what kind of disability do you have,” I usually ask “which of these things are difficult or inaccessible for you?”

8. Reach the People Who Are Getting Left Out

Segmenting disability by asking about barriers and difficulties is also a useful way to reach people who routinely get left out of disability engagement. There are many reasons why people who are disabled may not identify as such, and these 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 “legitimizes” 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 poll of chronically ill and neurodivergent Twitter users that I conducted in 2021 revealed that even within disability-inclusive spaces, temporal access needs tend to be viewed as personal limitations, rather than things that can and should be accommodated.

Asking about access barriers, framing them as difficulties, and asking respondents to evaluate those difficulties in terms of how they affect their lives allows for designers and researchers to capture a much wider range of experiences and perspectives. In a recent project that I worked on, more than 30 percent of respondents who did not identify with disability or as having a chronic health condition nonetheless reported experiencing at least one relevant access barrier. (An access barrier was defined in this case as something that moderately or severely impacted their safety or their ability to do their work or to fully participate in their day-to-day lives).

9. Make Design Processes Mutually (and Comparably) Beneficial

I advocate for the recognition and adoption of lived and embodied expertise within professional and academic design. At the same time, I struggle with how that recognition and adoption often leads to exploitation. Design gets called inclusive when it recruits marginalized users, testers and “co-designers.” But these people do not receive the same benefits from their participation as the professionals who extract, commodify, and receive credit for their knowledge. The professionals who lead and facilitate a design process typically receive:

• stable income
• “valid” professional and technical experience (i.e. something you can put on a resume and have taken seriously)
• demonstrable research and/or design outcomes to put in their portfolio
• power to influence project agendas and priorities

Marginalized one-time participants receive none of these things. So for designers and researchers who sincerely want to support and empower disabled people, the question is: what changes can you make to your design (and hiring) processes, to address these disparities?

10. Stop Relying On Traditional Networking to Reach Disabled People

I’ve saved this one for last because it is the one that asks the most of you. In design as in so many other fields, recruiting and hiring — both for permanent roles and for research participation — happen largely through personal, professional and local networks. And this means that “disability inclusive” design processes are biased by their overrepresentation of certain disabled perspectives, while they systematically exclude some of the most vulnerable disabled people with some of the most important experiential knowledge.

To be someone who gets invited to things in disability design, scholarship and activism, you have to be someone who cultivates your own network. You have to DM with people regularly and have conversations that aren’t about a specific task or project. You have to gossip about other people. You have to be in group chats. You have to write blog posts and go to events that don’t pay so maybe you’ll get invited to do something that does pay later. All of this is specifically inaccessible to people who have energy-limiting chronic illnesses and whose neurodivergence makes navigating the nuances of unstructured social interaction physically painful.

When designers and academics branch out from their personal and professional networks to recruit, they typically do one of two things. Either they recruit via local community organizations or they go through big disability charities. The limitation of local community organizations is that, well, they’re local. Local to most universities and agencies and companies with in-house design and research teams means urban. And that means disabled people living in rural and suburban areas — who often end up living there specifically because they are too impoverished to afford to live in the city — are systematically excluded from disability engagement.

Meanwhile, large-scale disability charities seem appealing because they can afford SEO which means they’re easy to find, both for professionals and prospective participants, they have good name recognition and wide reach. But most disability charities have a very conservative way of thinking about disability. A lot of them place emphasis on improving diagnosis in specific ways that reinforce clinical power dynamics instead of challenging the ways we think about and do diagnosis, on finding new treatments without addressing how many existing treatments are just totally inaccessible to people or the power dynamics that lead to certain conditions being underresearched, underrecognized and undertreated, on fundraising to make very showy contributions to a very few disabled people rather than advocating for systematic changes that will support independent living.

And these are just the mediocre charities. There are also charities that block the people they purport to represent on social media when those people question their research agendas or the transparency of the financial records. There are the charities that collaborate with tech companies to conduct eugenicist research oriented to the “treatment” (that is, eradication) of a neurotype, and who provide directories for what is essentially conversion therapy for Autistic children. And if you look at the leadership of these charities they are always dominated by white nondisabled people from professional backgrounds. When they have “patient advisory boards”, those are almost uniformly white and economically privileged because those boards don’t pay. And impoverished, multiply-marginalized disabled people cannot afford to be giving their incredibly limited and energy away for free because they are already using all of it just to try and survive.

So the alternative model I propose to designers trying to find a better way to do things is this: hire a couple of disabled people as outreach coordinators. They should be disabled people who are politically engaged enough to be connected to small grassroots organizations, to be aware of current and ongoing issues within disability communities and how those need to be reflected in design research questions and recruitment profiles for research participants. And I don’t mean political in the sense of electoral politics but in the sense of understanding that disability is political and politicized and collective, not just neutral or individual.

Over time, have these outreach coordinators build a stable pool of similarly politically- and community-engaged disabled consultants who you can turn to on a recurring basis as new projects and new research questions come up. Those consultants will provide you with a critically-informed perspective that will be connected to trends and power dynamics and issues of concern within their communities. And their insights will be more useful than recruiting “users” for one-off engagements over and over, because they will be tailored to the specific organizational and design constraints you are dealing with, because over time these consultants will become familiar with your organizational culture and processes.

Disabled And Here is a disability-led stock image and interview series celebrating disabled Black, Indigenous, people of color (BIPOC).

A little over three years ago, we published The With List, a self-reflection exercise for designers beginning to engage with disability.

Over the past three years, a lot has obviously changed in the world, and a lot has changed in the work we do at The Disabled List as well.

We have realized that whereas “with” was originally meant to signal a commitment to supporting and uplifting disabled people within design spaces, it has become coopted as a branding exercise that protects companies from critiques of their so-called inclusive design.

We have realized that advocating for “more disabled people in design” without advocating structural changes to what design is, how it operates, and what problems it seeks to solve is just advocating for a select few people to gain more power within an unjust system, while allowing the marginalization of others by that system to become more entrenched.

We have realized that it is not enough to “design for” ideal outcomes or marginalized user groups; we must design against systems that warp and recuperate those outcomes, and that inflict violence on those user groups. We must name the authors of the problems we claim to want to solve.

To that end, we have created a new list of self-reflection questions for designers that reflects our evolving thinking about design and disability. The first set of questions are general in focus; they are for any designers to reflect on, whether or not they have yet done work with disabled people and communities. The second set of questions are for designers who have already worked, or are currently working, with disabled people and communities. The final section asks designers to critically reflect on certain ways of thinking that shape how disability-engaged design is done.

In the interest of citational justice, we have not arrived at these ideas on our own. We have been shaped and supported by other incredible designers and scholars doing critical work at the intersection of design, disability and race, including (and very much not limited to) George Aye, Jennifer Rittner and Rua Mae Williams.

Like the WITH List, this exercise is meant to be a starting point for an ongoing process — just like any kind of learning. It is also not meant to be comfortable. Meaningful allyship means challenging a status quo that has benefited you, but which harms marginalized people and communities. That in turn means interrogating how you have benefitted from that status quo, and perhaps reinforced it, and how you can use the relative power that you have to disrupt it instead. And that means being willing to get uncomfortable, and to sit with that discomfort.

We recommend that you print or write out the questions, or copy them into a text document, and record your answers. This way you can keep track of how your ideas develop over time.

Yours in friction,

Liz and Alex

****

Section 1

1. What is disability?
2. How did I arrive at this definition?
3. What does not “count as disability? Why not?
4. What are some things I know about disabled people and their experiences? Where did I learn these things?
5. How do I feel about engaging with disabled people and communities in my work?
6. What, if anything, is my relationship to disability? What assumptions might I bring to disability-engaged design work because of this?
7. How might having a medical diagnosis, or not having one, affect the way a disabled person experiences the world? How might it affect their relationship to disability-engaged design? How might it affect their needs as users of what I design?

****

Section 2

1. Who are the disabled users I have worked with and how were they recruited?
2. How do we categorize disability in our recruitment screeners and how do those categories relate to the user experiences we are researching?
3. Who are the disabled people who are getting left out by our recruitment practices?
4. What is my role as a designer whose work involves disabled people and communities? How do I feel about that role?
5. Who are all the people and organizations benefiting from this work and how are they benefitting?
6. Who am I hoping to impress with this work?
7. How will the accessibility of this project be maintained and sustained after it has been announced?

****

Section 3

1. The Charity Model is one way of thinking about disability. It says that disabled people are disadvantaged and in need of help. Under this model, good citizens feel pity for disabled people or inspired by their struggle, and these feelings motivate them to “help” in ways that risk undermining disabled people’s autonomy. What are some ways that the Charity Model show up in disability-engaged design spaces?
2. What are some ways you could challenge those dynamics when you encounter them in your own work?
3. Can you think of any design projects that have ended up harming a marginalized community they were meant to help? Has this happened with any of your own projects?
4. How would you recognize if a project you are working on is becoming harmful? What would you do about that?

The Against List was originally published in The Disabled List on Medium, where people are continuing the conversation by highlighting and responding to this story.

I have so many goddamn pieces of almost-published writing gathering digital dust in my Google Drive because I had a flare during the revision process and never met the deadline, or the editor needed a simpler narrative or I was writing for a publication that it turns out has a habit of bailing on disabled writers mid-way through the editorial process. Some of this stuff is actually pretty good if I do say so myself and we work on crip time here so it’s fine that it’s about something that was happening two or three years ago, right?

I’ve been sitting on this one since April 2020 and I need to cite it in something else now so, whatever. Here it is.

Before March 2020, the prospect of becoming housebound was probably not something most people had ever seriously considered. The freedom to go where we want, when we want, is such a fundamental part of adult life for the nondisabled and unincarcerated majority that we tend to take it for granted, until we don’t have it anymore. Then social distancing happened and, almost overnight, millions of us suddenly didn’t.

There has been a necessary preoccupation with the mechanics of daily life as chronically healthy people have been learning how to work, socialize and shop for necessities when the very act of stepping outside your home suddenly requires planning and economizing. For people living with chronic illness, there has been an ambivalent fascination in watching these conversations unfold. There is compassion for the steep learning curve that so many are now faced with. There is pain in knowing that they had to navigate that curve alone, fighting for accommodations that were deemed unreasonable but which are now being taken up on a massive scale. There is frustration that even as their lifestyle becomes normalized, chronically ill people themselves are still marginalized within coverage of the pandemic — seemingly the only role that is imagined for them is that of noble self-sacrifice. There is also hope, that society may recognize that it has something to learn from disabled and sick communities, and that we may emerge from this crisis with a more nuanced and humane understanding of what constitutes a valid body and a good life.

Chronically ill people understand the deep current of anxiety that runs beneath all the discussions of what to do and how to do it. In the articles outlining the importance of getting dressed every day, the corresponding quarantine style hashtags on Instagram, and the proliferation of social media posts documenting new hobbies and reading lists, they recognize the fear of losing oneself in isolation. There is a sense that in losing access to the things we normally do, we risk losing who we are, says Brianne Benness, a writer and researcher who curates chronic illness narratives via the No End In Sight podcast and blog collection.

“A lot of generally healthy, energetic people are losing access to the activities that they defined themselves by,” she explains. “And we develop our identities in community with other people. It’s not just that I’m a writer, it’s that I’m a member of a writing group. So there’s this double piece where losing your community often also means losing your identity all at once, in one fell swoop. And that is a huge source of pain and grief.”

Losing the normal rhythm of your daily activities can also lead to a feeling of being disconnected from reality. “You can really lose a sense of existence when you don’t have a routine, when you’re at home, you’re not seeing people regularly, when you’re dealing with stress and trauma. It makes you feel unmoored,” says Ace Ratcliff, a writer and artist whose “veritable plethora” of chronic illnesses cause severe chronic pain and fatigue.

For many people with chronic illness, selfies have become an important tool for combatting isolation and feelings of invisibility, which raises the question of whether they can serve a similar purpose for healthy people struggling to adapt to “life at home.”

Photographic self-portraiture has a long history of challenging norms of visibility. In her digital book SELFIE, journalist Rachel Syme considers the work of Marian “Clover” Hooper Adams, a 19th-century American socialite who taught herself photography, and documented herself and her social circle. Within her self-portraits, Hooper Adams typically obscured her face; Syme speculates that this was the artist’s way of confronting the invisibility and repression she experienced in her day to day life. After Hooper Adams’ death by suicide at age 42, her widower burnt her letters and omitted her from his autobiography. Her photographs, however, survived.

In a 2016 interview with The Establishment, Syme commented on how selfies are changing the way that we look at ourselves and others: “[they] are introducing a totally new way of seeing that doesn’t necessarily turn people into objects, but rather avatars…these avatars get to have adventures, to go off and speak for you, to collect and fact-find information.”

The selfie-avatars of people with chronic illness are less inclined to adventuring, but they do mediate new forms of social connection. Jameisha Prescod is a London-based filmmaker who founded the online platform You Look Okay To Me as a space to talk about chronic illness using creative visual media. She was diagnosed with lupus in 2014 and remembers searching for information and resources on illness-specific message boards and Facebook groups. Prescod believes that shifting to more visual and personal modes of communication has allowed for a greater sense of connection.

“When I started my page, there weren’t weren’t any pictures of me. It was mostly things like quotes. Someone told me that people respond more to faces — there’s a vulnerability there and it allows people to connect with you more. So I started posting selfies and I realized that it created this sense of closeness,” she says. “Sharing images of myself and watching people speak back, and then looking at other people’s selfies as well, it helps create that sense of identity, that sense of community.”

Ratcliff has used selfies as a therapeutic tool — a way of reconnecting with reality, when experiences of invisibility have left them questioning their own perceptions. “A diagnosis hunt is such a lonely place to be, especially when you’re not actively bleeding or actively bruised, or broken in a way that people can see. There is so much loneliness in having people disbelieve you. It can make you feel like you’re losing your mind, like you’re losing your sense of self,” they explain.

“When you deal with traumatic dissociation one of the things they teach you are grounding techniques, to pay attention to your surroundings, describe the cloth that’s touching you, or to describe your breathing or count your breathing. I think that a selfie feels a little bit like a grounding exercise. Proof of existence, proof of life. It’s proof that you were in a moment in time doing a specific thing.”

Karolyn Gehrig is a writer and artist whose #HospitalGlam project has become an icon of invisible illness self-representation. In 2014, Gehrig began photographing herself in clinical spaces, using the highly feminized visual language of fashion photography. It was a way of claiming agency within spaces where she had experienced trauma and disempowerment.

For Gehrig, selfies are more than tools for self-expression and reflection; they are talismans. “The practice of making that frame and imagining myself in the frame helps me mark out a space that is mine, and remove other people from violating my boundaries,” she says.

The wider applicability of this ritual, in a world newly captivated by personal boundaries, does not escape her notice: “Now we’re grappling with other people in our personal space. Social distancing, six feet. You can take your arm out and take a selfie and see, “who’s in my frame?” If there’s no one else in your frame, you’re probably good. Take a selfie, look around. And keep people out of your frame.”

As the practices of chronic illness selfie-taking become personally relevant to a much wider audience, there is also value in examining the stigmas attached to them. Prescod acknowledges that she still grapples with a sense of self-absorption whenever she records herself, and is nervous that she may someday be accused of being “attention-seeking” or “over the top” — two labels that are commonly attached to people who do not perform their chronic illness is a socially acceptable enough way.

Gehrig links this stigma to the wider association of disabled bodies with undesirability. “We’re not used to the idea of people documenting things that are thought of as undesirable. Because we attach images to desire,” she explains.

She suggests that by engaging with this tension, we are afforded an opportunity to reconsider what and how we desire: “What can you desire more than your own life? Whether it’s past or present, we want to live. We want to survive. If we are attaching images to desire, that desire doesn’t have to be aspirational. Desire and aspiration are not the same thing.”

In a cultural moment defined by uncertainty about who we are and what our future may look like, selfies that document our isolation and vulnerability have the potential to be more than a coping strategy; they can become a tool for radically changing the ways that we assign value to our bodies and our lives.

When we think about accessibility, we tend to do so in terms of spaces. The first, and sometimes the only, question we ask is: can people get into this space and move around it? The accommodations we think about at this stage are physical and concrete: things like ramps and push buttons and accessible bathroom stalls.

Next, hopefully, we ask: once people are in the space, are the things they came to the space to experience actually available to them? At this stage we think a lot about sensory barriers and accommodations: about making signs and wayfinding systems available in Braille, and providing captioning and sign language translation.

Sometimes, and this usually only happens within disability-led creative and activist spaces, we also ask: how are people experiencing the things that are available to them in this space? We think about cognitive and psychological and cultural barriers, whose accommodations may include things like plain language translations, content warnings and alt text as poetry.

When we think about making spaces accessible, we tend to ignore how those spaces exist in time. When the pandemic started a year ago, a lot of events started moving online. As someone who has been housebound for the better part of five years, it initially seemed like community and culture had suddenly become available to me in a way they hadn’t been in a very long time. And I think for a lot of disabled people, that did actually turn out to be true. In the past year, I’ve watched enviously as folks have organized and participated in an overwhelming number of amazing panels and workshops and watch parties and dance parties. I myself have attended exactly two non work-related events. Which is admittedly two more than in 2019.

I’ve come to realize that even when the barriers of physical space are rendered nonexistent, and when digital space is configured as accessibly as possible, with captioning and bathroom breaks and a cameras-optional policy, as long as a space is fixed in time, it remains fundamentally inaccessible to me.

In order to explain why that is, I need to explain a little bit about my particular experience of disability, at the intersection of chronic illness and neurodivergence. I am never not exhausted. And yeah, I know, we’re all exhausted, all the time, late capitalism fucking sucks, we all have the same hours in a day and it’s never, ever enough.

Except: we really don’t all have the same hours in a day, or even the same days in a week. Over the past couple weeks, I’ve lost about five days to an illness flare. When I say five days, I’m only counting the days where I was literally unable to function — unable to cook or do laundry or even distract myself from the pain by playing a videogame, never mind send emails or prepare for talks or read research articles. All I could do was lie in bed and watch The Office on Netflix. I don’t even like The Office all that much, which is exactly why it worked, because it offered background noise without requiring anything of me.

My flare was triggered because I had needed to leave my apartment to go sign some urgent paperwork, and the weather was bad, and the place was a mile from the bus stop and I hadn’t taken the snow tires off my wheelchair yet and those tires really fuck my shoulders up after a while. On top of that I had a meltdown when I realized the building that contained the papers I needed to sign did not have a wheelchair-accessible entrance. Unfortunately, both stress and pain are triggers for my immune disorder, and unfortunately I am also literally always stressed and in pain because the world is such a goddamn inaccessible hellscape.

So despite my best efforts to manage my immune disorder on a day-to-day basis, I end up in flares pretty routinely, often because I have to do stuff that I know is going to be inaccessible and harmful to me but is nonetheless unavoidable.

And this impacts my relationship to time in a few different ways. First, the obvious: I lose time to my flares. Five days out of 14 is a lot right off the bat. At the risk of sounding like I’m endorsing disability simulations (which I’m really, really not), just imagine that you’ve been told you now have 35 percent less time in which to finish your work projects, your errands, your chores. It’s pretty rough.

I also lose time in other ways. Because I am constantly aware of the fact that I am inevitably, eventually going to come up against more of these inaccessible, unavoidable things, I know I have to pad my temporal budget with time to prepare for and recover from them. So, for example, I know that if I have to go out to an appointment, that is the only thing I can do outside my apartment that week, and I should probably also see about limiting my video and phone calls to protect my energy levels. In the chronically ill community we call this pacing, but what it really boils down to is even fewer useful hours in a day.

When you have so few hours in a day, you end up in a state of perpetual temporal debt. You are never ahead of schedule or even just keeping on top of things. You are constantly playing catch-up. And then a flare hits, and you’re plunged even further into debt. And when you live in temporal poverty, it becomes really hard to imagine spending time on something that’s nonessential. And it becomes even harder to commit to doing so in advance. In her essay, “Why I Make Terrible Decisions, or Poverty Thoughts,” journalist Linda Tirado says, “When you never have enough money it ceases to have meaning…Poverty is bleak and cuts off your long-term brain.” Temporal poverty works in much the same way.

In November of last year, Twitter rolled out a feature called Fleets. These allow users to create time-limited posts that disappear after 24 hours. Disabled folks and accessibility professionals rightly called Twitter out on the feature’s faulty subtitling and apparent incompatibility with screenreaders at launch. No one called out the fundamental inaccessibility of a feature that is designed to disappear after a single day.

A few weeks ago, I made a Twitter poll, which asked other neurodivergent and chronically ill people whether virtual events that necessitate synchronous co-presence are accessible to them. Roughly 75 percent of the people who responded said either “yes” or “sort of” — but what was really interesting to me was how many of them followed up in my replies with some variation of, “it’s fine as long as I’m not having a tired day/migraine/sensory overload/etc.” Because what those people were telling me was that no, synchronous events are really not accessible to them, but they’ve been acclimated to the belief that it is unreasonable to expect accommodation for temporal access needs.

For roughly the past four decades, disability activism and advocacy have been underpinned by the idea that disability is not a functional problem located in individual bodyminds, but rather a form of oppression and exclusion located in society. But ask people about temporal access needs, and suddenly the problem is relocated right back into individual bodyminds.

There are a few likely reasons for this. One is the reflection of a particular flavour of ableism, that traces back to how the clinical gaze conceives of, and accredits, disability. When a group of symptoms or impairments — that is to say, functional differences that interfere with a person’s ability to be normatively productive under industrial capitalism — can be mapped to a specific, tangible and somatic site of pathology, the clinical gaze accredits them as disability, and seeks to correct the physical deviation it has identified — whether or not such “correction” is actually desired by the disabled person themself.

Symptoms that go unmapped are instead attributed to weakness of character and viewed as something to be managed behaviorally, by eating better, exercising more and practicing mind over matter. (I want you to read these words as I wrote them, while rolling your eyes dramatically.) These disabilities are unaccredited by the clinic.

Predominant historical and legislative approaches to accessibility can be understood as a response to the state’s coercive regulation of accredited disability through the regime of clinical intervention. Accessibility resists an orientation to cure by seeking to create a society in which cure is irrelevant.

But where does unaccredited disability fit in? Mainstream approaches to accessibility find nothing to accommodate, nothing to resist, because for the unaccredited, cure was never on the table.

There’s also the fact that accessibility, as produced through policy and design spaces, tends to be reactive. It adapts society to support the participation of (some) disabled people. But the society those people are invited into is still capitalist and white supremacist. Participation in such a society means something very particular, which is why the Americans With Disabilities Act (for example) enshrines disabled persons’ right to reasonable accommodation.

It is why reasonable accommodations enable a disabled person to approximate normative productivity under capitalism, and why unreasonable accommodations are those that accept the inherent worth of disabled bodyminds that work and think and communicate slowly, chaotically and atypically.

Reasonable accommodations are those that do not challenge the system of capitalist white supremacy in which we are enmeshed.

This is why it’s so difficult to so much as imagine what temporal accessibility might look like. We live in a society where productivity is a tacit requisite for personhood, and machine-like speed, efficiency and regularity are prized virtues. To imagine temporal accessibility is to imagine the dismantling of capitalism.

Technically this is about a week late but since I haven’t figured out how to hack my experience of time to work like a normal human’s, it’ll have to do. Also, like basically everything I write, this is fucking long so…be forewarned.

This is the 2 year anniversary of my successful experiment with biohacking my narcolepsy.

In April 2016, I moved back in with my parents after (barely) finishing out a research contract and being unable to find any more work in part because my inability to stay conscious for most of the previous 5 years had kind of fucked up my productivity in a ‘publish or perish’ field, and in part because I was at a point where I needed to commit full-time to accessing diagnosis and care for the chronic illnesses I’d been struggling with since age 4, which had been getting progressively more debilitating.

In June of that year, my fourth sleep specialist threw up his hands after I reported experiencing concerning side effects on dexedrine, and told me that maybe I just needed to accept that this was what my life would be like now. I was sleeping upwards of 16 hours a day at the time and my Epworth Sleepiness Scale score was 22 or 23 (a score of more than 10 is considered pathological; 24 is the maximum). I was not allowed to drive. There was no functional public transit in my rural hometown. I literally could not leave the house unless my parents escorted me. I could slip from consciousness into REM sleep in under 30 seconds, regardless of where I was or what I was doing. Even when I was nominally awake, after sleeping for 16 hours, my brain functioned the way most people’s would after being deprived of sleep for about 72 hours.

In spring of 2017, I was lucky enough to find a new sleep specialist who was experienced in treating both narcolepsy and patients with complex medical histories, including Ehlers Danlos, which I had been diagnosed with a few months earlier. He put me on Vyvanse, which yielded better results with a more tolerable side effect profile than any of the other six drugs I’d been tried on at that point. My ESS score went down to 13 and I began sleeping between 9 and 13 hours a day. I still had no sleep cycle to speak of — some days I’d be awake from morning til evening, some days I’d wake up at midnight and go to sleep around noon. I lost about 40 pounds because it killed my appetite and made me feel nauseated pretty much all the time. There was about one week per month where it paradoxically seemed to make my hypersomnolence and cataplexy worse. But it was better than what I’d been dealing with before and there weren’t really any other medications available to me to try.

In January 2018 I was diagnosed with mast cell activation syndrome, which I’d suspected for a while. I was also starting to suspect that my narcolepsy was secondary to my mast cell disorder, because I remembered that a new narcolepsy drug that had been released while I was living in the UK targeted an unusual histamine receptor in the brain. The medication was proposed to work for a subpopulation of narcolepsy patients who have constitutively decreased histamine production in their brains. This seemed counterintuitive based on the fact that MCAS involves mast cells dumping histamine throughout the body at frequent and erratic intervals, but it seemed like too much of a coincidence.

I developed a hypothesis that what was happening to me was a complete dysregulation of the 24 hour cyclical signalling that normally happens through two different kinds of histamine receptors in the brain — the kind of receptor that’s targeted by the new narcolepsy drug, and the kind that’s targeted by old-fashioned allergy meds like Benadryl. This would explain why I was not only hypersomnolent, but had absolutely no discernible pattern to when my body tended to be awake and when it tended to sleep. I suspected that I needed to artificially re-establish this cyclical signalling by targeting one of these receptors during the night-time, and the other one during the day. Half of this equation was easy to solve — Benadryl is easy to come by. But the new narcolepsy drug hadn’t yet been approved for use anywhere in North America. So I did a lot of reading and eventually got lucky and found a plant that contains a chemical that targets the same histamine receptor in more or less the same way.

I started taking Benadryl at night in early April of 2018, and found that I began waking up feeling more rested and refreshed than I had in a very long time. I discontinued it briefly after my allergist told me I should because “it makes you fall asleep but doesn’t give you good quality sleep” and warned me about studies that had linked chronic use to dementia-like cognitive deficits. After a few days of waking up again feeling like I’d never rested at all, I did some more reading, discovered the studies he had mentioned were exclusively conducted in elderly people (who are more likely to have constitutively decreased cholinergic tone, kind of a significant thing in dementia), who were taking Benadryl during the daytime. I also reflected on the fact that when I asked him about a possible relationship between my narcolepsy and MCAS he dismissively told me he’d never heard of histamine playing a role in sleep-wake regulation. Ultimately, I decided against following the advice of a dude who a) clearly doesn’t know how to read studies critically and b) doesn’t know 101-level stuff about the neuroimmune effects of the condition he purports to be a world-leading expert in. I started taking the Benadryl again, and received my order of the experimental plant a couple weeks later. And within a few days, I was sleeping 7 to 8 hours a night, going to sleep and waking up at the same time every day, and waking up feeling refreshed which was honestly not a feeling I’d ever really experienced.

I kept quiet about it for a few months because I’d had a couple of false starts with other meds that seemed like they were working reasonably well for a few weeks, before the effect gradually faded away or the side effects took over. This time, that didn’t happen. I’ve been on this regimen for two years now. I sleep between 6 and 9 hours a night, depending on what time of year it is, if I had caffeine too late in the afternoon, if I’m having a chronic pain flare, and how stressed I am about other shit. Almost like a person with a normal brain. If I’m not having a flare of one of my other chronic illnesses, I wake up feeling…awake. My ESS score is now 2. I got my driver’s license back last spring. I drove the three hours from my hometown back to my current city over the holidays on my own. I still take a low dose of Vyvanse to help with concentration but now I can take it at doses low enough, and with frequent enough ‘med holidays,’ to minimize the side effect profile.

I’ve also begun hacking my other symptoms and body parts. About six months after starting my narcolepsy regimen, I discovered that mast cells release heparin. This is interesting because the first chronic illness I ever received a “diagnosis” for was idiopathic thrombocytopenic purpura — elevated bleeding and low platelets of unknown etiology — at age 4. I had been told many times by my doctors that my platelet counts were not low enough to cause spontaneous bleeding. When I pointed out that I did experience spontaneous bleeding though, they never seemed to hear me. They never responded, at least. Later, when I’d offer to show them the pictures of spontaneous hematomas I had stored on my phone, they’d decline and end the discussion. As it turns out, heparin not only prevents clotting, long-term exposure to it can also reduce platelet counts. I found a very old, admittedly low quality study that suggested vitamin C may antagonize heparin. So I started taking a moderately high daily dose of vitamin C. My haematologist warned me that she could not endorse my self-medication because “we’ve had patients who take these natural supplements and end up coming in with liver or bone marrow failure.” I agreed that self-medicine carries potential risks and asked what other alternatives she could offer me. She repeated that she could not endorse me self-medicating and ended the appointment.

When I was in the ER for an emergency appendectomy last April, they ordered a PFA test to check my platelet function before taking me into surgery. For the first time that I know of, my PFA came back normal.

Over the past year, I’ve started experimenting with some plants and supplements to improve my muscles’ tolerance of, and recovery to, fatigue and injury, in addition to my daily doses of off-the-shelf mast cell stabilizers and antihistamines. I have literally never been able to exercise without experiencing flu-like symptoms that would linger for days and gradually accumulate until I’d develop a persistent wheeze and muscle pain that would barely let me get out of bed. I’d finally give up, and then a few weeks or months later, hit the gym or the pool and start the whole cycle over again. I’m now wheeling on the paths and bike trails near my building twice a day (wearing a mask and during low-traffic times!), gradually building up the distance that I’m going each day. I’m feeling less pain and fatigue after my workouts each day which is literally not a thing I have ever experienced before. Right now I’m wheeling about 7 kilometers every day.

I think this will probably always be the accomplishment I am most proud of: having found a way to save myself in the face of decades of utter neglect from my healthcare. I am acutely aware of lucky I am to have succeeded in this endeavour; I know there are other chronically ill folks who are dealing with the same neglect and who have not been able to find self-medicine options that work for them. I’m also angry that I had to do it, and even angrier that most of my doctors seem to a) think I did it out of some misguided ideology rather than absolute desperation and b) take its success as evidence that I was making all my symptoms up in the first place. (Credit to my current sleep doctor who remains the one medical professional who fully acknowledges both the risks and necessity of my biohacking practice and does his best to support me in being safe with it.)

Moral of the story: gentrified biohacking is boring and very ten years ago; respect, honour and support the trans and disabled folks who are hacking their bodies in defiance of the systems that have been structured to let them wither and die.