Chronically Under-Addressed: Considerations for HCI Accessibility Practice with Chronically Ill People

This post summarizes our research paper “Chronically Under-Addressed: Considerations for HCI Accessibility Practice with Chronically Ill People,” which was accepted to the ACM Conference on Accessible Computing (ASSETS) 2022. This work was written by co-first authors Emma J McDonnell*, Kelly Mack*, Leah Findlater, and Heather Evans. This paper also received an honorable mention, which recognizes the top 5% of ASSETS submissions.

Accessibility research has the potential to support the growing number of people with chronic illnesses by building technology to help meet their access needs. However, Human Computer Interaction (HCI) research until now has viewed chronically ill people through a medical lens, usually focusing on tracking or treatment. By viewing chronically ill people as having access needs, we reveal the role that HCI researchers can play in supporting chronically ill people in their daily lives. To do so, we developed three main principles that technology designers should consider when building technology with and for people with chronic illnesses. We then demonstrated the application of these principles in the co-first authors’ lives through autoethnographic case studies. Finally, we explain how chronic illness invites us to reconsider how we define accessibility to encompass consequences rather than solely people’s capacities.

Principle 1: Beyond Patients

We must view people with chronic illnesses as more than medical patients, but rather as people with valuable expertise and non-medical access needs.

While chronically ill people often require ongoing medical care, when HCI primarily focuses on medical technology for people with chronic illnesses, researchers miss opportunities to support people more holistically. Additionally, thinking about people as patients assumes they are not the expert on what they need. Chronically ill people are often treated poorly and discriminated against by medical providers, meaning that research with a clinical focus may miss many people’s perspectives. However, chronically ill people consistently demonstrate and share their expertise over their bodies, diagnoses, and ways they could be better supported in places like social media support groups and blogs. People do not just share strategies to manage medical care, but also ways to meet non-medical access needs (e.g., what kind of tablet is best for working while lying on the floor). We argue that HCI accessibility can and should design for chronically ill people and that our field’s non-medical approach and emphasis on participants’ expertise is a good match for areas where the community is currently not well-supported.

Principle 2: Variability of Ability

Chronic illness causes high variability in ability, which is crucial to consider when designing technology to meet chronically ill people’s access needs

Every body is different and has different abilities and experiences moving through daily life. It is especially important to recognize this variability in ability when considering people with chronic illnesses due to the wide fluctuation in ability that a single person might experience. A chronically ill person might have baseline variations in ability where, for example, during a flare, they wake up with less energy or more symptoms that limit their activities for the day. Additionally, actions in daily life can leave a person with a difference in their symptoms and abilities. For example, a common experience in the chronically ill community is being too drained or dizzy to do anything after showering. Because of these fluctuations in ability, people with chronic illnesses might interact with the world and technology differently from day to day, or even hour to hour, depending on their current state. To design technology that is useful to people with chronic illnesses, we need to keep this variability of ability front of mind.

Principle 3: Include the Body

Research with people with chronic illnesses must be done using a model of disability that accounts for both the physiological and sociopolitical barriers they face.

Academics within disability studies have historically separated ways of thinking about disability into two models: medical and social. Medical model thinking treats disability as something wrong with a person that needs to be fixed and prevented in the future. On the other hand, social model thinking sees disability as a problem of society not planning to accommodate the diversity of human ability. HCI accessibility has learned from social model thinkers in recent years to focus on ways that technology design can leave out large groups of users. However, neither of these models fully supports chronically ill people. While a more accommodating society that does not exclude chronically ill people is desirable, chronically ill people emphasize that attention to medical care and the daily fluctuations of their body is still necessary. Therefore, to better understand chronically ill people’s access needs, researchers must balance both bodily and social factors.

Case Study: TikTok Consumption

Our paper details three cases about Emma and Kelly’s technology use considering their chronically ill experience, including using text-to-speech tools to do readings and the benefits of remote work. Here we focus on one of those case studies: creating an accessible workflow for consuming social media content on TikTok.

The Scenario:

Emma is both deeply hooked on the social media platform TikTok and fond of sharing videos that she finds amusing. Kelly enjoys similar content as her friend, but does not usually use TikTok because the amount of videos with shaky camerawork leave her extremely nauseous. Taking inspiration from how she shares memes with blind friends, Emma began sharing TikToks with Kelly with a brief motion description of the contents of the video.

Now, when Emma comes across a TikTok with Kelly, she writes up a description like the following:

“This seems very up your alley though has a lot of motion. The camera is steady when it’s still but moves side to side to track the dancers (in fits and starts though, like it moves, stays, they move out of frame and it then follows, not continuous tracking), and they’re dancing at a reasonably close zoom so all the spins constitute motion on the screen. I will audio describe and pause for you tomorrow if you want”

When Kelly receives the TikTok and description, she can assess when and how she wants to consume it, if at all. For example, she may watch the video in the morning when she’s feeling well and risk the symptoms because she’s really interested in the content. Other times, she might choose to delay watching the video because she cannot risk being nauseous for an upcoming event.

Applying the Principles:

We can see how each principle can apply to understanding our experience:

Beyond patient: this case demonstrates a non-medical scenario where Kelly’s access needs were not met by medical providers’ expertise, but instead, her years of experience living in her body and learning what triggers her symptoms and to what severity. The solution that Emma and she created relied on Emma’s curiosity and willingness to understand Kelly’s needs and the deep trust they built overtime.

Variability of ability: whether or not Kelly chose to consume a video depended on her current abilities and her estimates of how the video would affect her. Emma’s descriptions aimed to give Kelly the information she needed to perform this consequence-calculus.

Include the body: understanding what videos to send to Kelly and how to consume them deeply relies on Kelly’s physical sensations. Leaving her body out of the conversation and focusing purely on social/technological solutions misses a key part of the picture.

Consequence-Based Accessibility

Traditionally, technology designers treat accessibility as a question of what people can and cannot do. To make something accessible, therefore, we create a tool that lets a disabled person do something they previously could not. However, this approach starts to break down when thinking about how to support chronically ill people. For many people, chronic illnesses create access needs because the consequences of taking a given action would be too high to manage (e.g., someone with blood pressure issues might pass out during hot yoga). These consequences are also not consistent — they may change due to illness-based variability or because someone is dealing with the effects of an action they took earlier in the day (e.g., because someone walked to campus for class, they may need more support while making dinner). Therefore, to design technology for chronically ill people, we must understand accessibility in terms of both someone’s capacity and the potential consequences they would experience based on a given action. Additionally, because people can choose to incur consequences, technology designers must anticipate the fact that chronically ill people will sometimes choose to take an action that will leave them with significant consequences (e.g., someone may get a migraine from continued screen use because there were no non-visual alternatives).

We hope that this work spurs interest in performing thoughtful research with people with chronic illnesses. We invite you to read our paper for more details about designing technology for people within this group.

Takeaways:

• Chronically ill people have extensive expertise about their bodies and experience with their condition; this knowledge should be viewed as valuable and considered in technology design.
• Chronically ill people have access needs outside of medical settings (e.g., they have jobs, social lives, etc.); not all technologies/interventions should look at only medical contexts.
• Chronically ill bodies vary in their symptoms and abilities, often frequently. This variability in ability affects how a person interacts with technology over time.
• To do research with and design technology with people with chronic illnesses, their physical sensations and experiences must be considered (not just social factors).
• Chronic illness emphasizes the benefit of using a framework of consequence-based accessibility, where accessibility is not just about capability (I can do this action) but is also about the consequences that a person will face after taking an action.