We usually think about disabled people’s experiences of access barriers as being about intensity and persistence. A minor inconvenience for someone without a related access need can be a blocker for someone who does. And while anyone can experience a situational access need, a disabled person’s access needs are usually thought of as permanent and consistent. The curb cut is a great example: an ambulatory person may find it more comfortable to step onto a gentle slope, but even without a slope, they can still step onto the curb. For many wheelchair users, the absence of a slope means being stuck in the roadway. The intensity of the inconvenience an ambulatory person experiences because of a missing curb cut may increase if, for example, they are pushing a stroller or a shopping cart. But for a wheelchair user, the intensity of the barrier persists as long as they are using their chair.*

* With the caveat that some manual wheelchair users may develop skill at jumping certain curb cuts, depending on their specific chair, upper body strength, joint stability, and level of experience as a wheelchair user.

This intensity-based understanding of accessibility gets complicated when it comes to the access needs of neurodivergent people and those with chronic pain and illness — what I collectively call neuro-accessibility, to encompass cognitive, temporal/energetic, pain/sensory hypersensitivity and emotional accessibility considerations.

In fact, I would argue one of the main things that differentiates ‘invisible’ disabilities from ‘visible’ ones is that the access barriers experienced by invisibly disabled people are rarely all-or-nothing blockers — at least in the moment they’re encountered. Instead, cognitive, energy and sensory barriers follow users through time, their effects combining with other barriers to enact a cumulative toll that eventually blocks them from completing other tasks.

The spoon theory is a well-known metaphor within the chronic illness community, used to describe how basic activities of daily living all pose this kind of access barrier to a person with an energy-limiting condition. It represents a person’s energy levels as a set number of spoons they have at the start of each day. Every task they complete depletes spoons from their reserve, and there are always more tasks to complete than there are spoons to spend.

Christine Miserandino, author of the spoon theory, writes:

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

The spoon theory has since been adopted and adapted by other disability groups, including some neurodivergent communities. Not all neurodivergent* experiences are inherently energy-limiting — that is, not all neurodivergent people necessarily start their day out with a very small spoon budget in the same way that someone with an energy-limiting chronic illness might. What happens instead is that navigating a world that is not built for how they think, feel and process sensory input means that tasks chew up more spoons that they do for most people. The result is more or less the same: there are always more things to do than spoons to spend on doing them, neurodivergent people have to make choices about which things to spend their spoons on, and at a certain point, they run out of spoons, which leaves them unable to do anything else until their spoon budget resets.

Thinking about access needs and barriers through the lens of spoon theory means focusing less on blockers and whether someone can strictly accomplish a task or interaction in the moment that they encounter it. Instead, we need to ask: what does this cost the user, in terms of physical, cognitive and emotional load?

* In my research and design, I use an expansive definition of neurodivergence, meaning anyone whose central nervous system works differently from the ways that society expects and accommodates by default. This includes the groups people most commonly think of when they mention neurodivergence, Autistic people and people with ADHD, but it also includes other groups who are often overlooked in conversations about neurodiversity, such as people with intellectual disabilities, people who identify as mad or mentally ill, and people with conditions like epilepsy, narcolepsy and atypical sleep cycles.

For both chronically ill and neurodivergent people, spoon budgets aren’t static. These disabilities are often dynamic, which means that people have varying levels of energy and physical, cognitive or emotional capacity from day to day, week to week, month to month and year to year. And energy and capacity levels are affected by people’s experiences.

Spoon theory gets a bit messy when trying to conceptualize what happens when someone has to do a task that requires more spoons than they have left. Maybe they’re a single parent and they still need to drop their child off at school and take them to doctor’s appointments. Maybe they really don’t have the capacity to work full-time but they can’t afford not to. Maybe they are having a pain flare-up but they need to travel to another city for the specialist appointment they’ve been waiting months to get.

When that happens, people end up having to take out a pay-day spoon loan. They borrow just enough spoons to get the thing done, knowing that when their spoon budget resets, the spoons they borrowed are going to come out of it with interest. A lot of interest.

And just like the predatory lending of real pay-day loans, pay-day spoon loans tend to trap people in a cycle of borrowing against capacity they don’t have, so that their baseline spoon budget gets smaller and smaller, and takes longer and longer to reset.

At a certain point, this turns into burnout.

The burnout experienced by neurodivergent and chronically ill people is superficially similar to, and often overlaps with the occupational burnout that nondisabled people may be more familiar with. But instead of being caused by workplace demands that exceed someone’s capacity, it’s caused by demands that exceed capacity in every domain of a person’s life, often over the course of years or decades. As a result, its impact on health can be more profound, and recovery can be slower and more challenging.

So what does this have to do with design?

For neurodivergent and chronically ill people, burnout is a product of design. It is caused by navigating a world where every interaction takes more effort than it should, and where there aren’t enough mechanisms that allow people to delay or step away from a task when they’ve reached the limit of their capacity.

Burnout also shapes how people engage with products and services. As their capacity decreases, the frequency and intensity of the access barriers they run into increases. They begin to avoid or delay tasks that they know will be too challenging to handle, and when those tasks are unavoidable, they make more errors, leading to more negative sentiment and greater reliance on support channels.

If burnout is made by design, then design can also help mitigate it. (I won’t say ‘prevent’ here, because the catch is that burnout is the cumulative product of design decisions made by every product, service and system that a person interacts with — there is only so much any one design team can do.)

When building neuro-accessible experiences, CX and UX teams should aim for two main goals:

1. Evaluate how much physical, emotional and cognitive effort users must spend when completing a journey, flow or interaction, and minimize non-essential expenditure.
2. Give users a penalty-free way to pause or delay their engagement with a journey or flow.