Invisible Stigma and its influence on UX Research with Persons with Disabilities
If you are in UX research or conducting usability tests, you probably already interviewed at least one person with disabilities before. An estimated 15% of the world's population is living with one.
On Monday, I guest-starred at technica11y with the German version of my invisible Stigma from Inclusive Design 24. In preparation, I revisited my presentation notes and lamented the jokes I didn’t fit into the live event. Can’t let them go to waste! You can read the extended version here or watch the talk on YouTube:
What is invisible stigma?
Before we can tackle that we have to learn about its parent. So: What is stigma? Besides that one BTS song, the word “stigma” mostly carries bad connotations:
Stigma was borrowed from Latin stigmat- , stigma, meaning "mark, brand," and ultimately comes from Greek stizein, meaning "to tattoo." Earliest English use hews close to the word's origin: stigma in English first referred to a scar left by a hot iron—that is, a brand. In modern use the scar is figurative: stigma most often refers to a set of negative and often unfair beliefs that a society or group of people have about something—for example, people talk about the stigma associated with mental illness, or the stigma of poverty.
From the Merriam-Webster Dictionary
A set of negative and unfair beliefs that a society or group of people have about something
A mark of shame or discredit
An association of disgrace or public disapproval with something, such as an action or condition: synonym: stain.
A visible indicator of disease.
A small bodily mark, especially a birthmark or scar, that is congenital or indicative of a condition or disease
Notice how most of the above relate to disease or negative reception? Not very cutesy.
Physical indicators
Sometimes it might be helpful to carry a physical indicator of one’s disability. For example in traffic, it is actually very important for pedestrian safety to have the white cane or the yellow arm badge with 3 dots well visible. It communicates to oncoming cars that they should not assume that you see them. Which, by the way, doesn’t only apply to not running someone over, but also to giving visual cues that the person can cross the road now. In her biography, Jasmin Ciplak mentioned one encounter in her orientational mobility training (white cane training) when a driver wanted to let her know that she could walk across now, by gesturing with their hand.
But in a coffee shop? Or when you’re just sitting on a park bench, waiting for your friends to get there? A visible indicator might be more annoying than helpful. People have reported that strangers just approach them and offer help, which while well-intentioned is not always elegantly done, especially if people assume to know what you need help with.
This is why many prefer to fold up their canes once they arrive at their place of interest. One participant explicitly told me that they always keep their cane in their bag when they sit down for coffee because “not everybody needs to know that I’m blind”.
So there is an element of caution involved too. Now add other concerns to the mix: for example pickpocketing, particularly if you need your phone to navigate aka to get back home. In our research for the Sixth Sense, this has been a repeated concern: “If I need to have my phone out all the time and my white cane in the other hand, I might be an easy target for pickpocketing” And it is a valid concern, as believing in the honor codex of thieves seems like a high-risk safety strategy.
And that’s a part of invisible stigma: The awareness of how you are being perceived by others, and constantly considering how you can manage that impression.
If stigma is a visible indicator, how do I spot invisible stigma?
You don’t. You experience it. That’s the catch with invisible stigma:
Discrimination is highly arbitrary and doesn’t care about specific markers. Think about what’s recommended for CV writing: no picture, no birthdate, no address, no hints at age, family, and ideally no hint at your gender because all of the above could lead to a subconsciously biased decision against you, without ever seeing you in person.
In a way, possessing an invisible stigma is an advantage compared to an obvious one. You have the option to decide if and when to disclose it and to whom. But if you choose not to (due to concerns for your safety, your public image, or future work opportunities, whatever) you then have to accommodate yourself without drawing attention to it. This comes with a heavier mental load. Think about masking in neurodivergent folks.
Invisible stigma: invisible disabilities
Quick recap: As invisible or hidden disabilities we understand any kind of disability that isn’t obvious to the naked eye. You may also know the Hidden Disability Sunflower, which aims to tackle exactly that: making invisible disabilities visible. However, as we already cleared up with physical indicators, this can also depend on the situation. Let’s stick with the same example:
Someone using a white cane walking from the bus stop towards that one new and hyped 3rd wave coffee shop is easy to recognize as having low vision, but imagine you pass by the same person while they are already enjoying an oat milk flat white inside said new and hyped coffee shop, with their white cane neatly folded up inside their messenger bag. Not so obvious now, right?
BUT, big but, invisible disabilities don’t equate 1 to 1 to invisible stigma. This is a far more individual matter. And it’s also important to note that invisible stigma doesn’t stop at disabilities:
Invisible stigmas are defined as characteristics of a person that are socially devalued but are not readily apparent to others, such as having a stigmatized sexual orientation, gender identity, religious affiliation, LGBT association, early pregnancy, disease, illness, etc.
The keyword is intersectionality. When discussing aspects of human identity, we tend to zoom in on one aspect, yet realistically not one person’s identity can be reduced to a singular defining marker. Yes, some may be more relevant than others in certain discussions, but completely ignoring the others would be a disservice.
How does it impact user research?
Now you may see how this can become an obstacle, especially if you are researching how to accommodate for specific disabilities.
In user interviews, this can look like users downplaying or compensating for their struggles. This can be achieved through rigorous preparation. Actually, many disabilities require you to spend extra time on preparation:
You’re blind and want to take public transport? You gotta check the route first, and it’s not just a quick Google Maps query on how to get from a to be. Some people memorize the number of stops and names until their destination or transfer point because it’s hard to check how many more stops there are before you need to get off. Especially with inconsistent underground connections, you can’t exactly pull up the map app and rely on GPS to tell you where you are. You would probably be somewhere in the middle of a river instead of 4 stops from your destination.
Another example would be using scripts for conversations, you might know this from some people on the autism spectrum, who rehearse conversations in their head or out loud in front of the mirror as preparation for having specific conversations.
The latter example might be a bit more extreme because the autistic person is likely still aware of the effort they put into preparation. It all depends on what is perceived as “normal” (in big air quotes) or expected or appropriate behavior. If you are used to planning your routes according to low-floor carriage availability, that might not strike you as unusual or extra effort anymore.
Masking
Both examples are compensation techniques for living with a disability in an inaccessible world, and this feels like the perfect timing to namedrop Masking here.
Masking is a defensive behavior in which an individual conceals their natural personality or behavior in response to social pressure, abuse, or harassment. It can happen subconsciously as a coping mechanism or trauma response, or it can be a conscious behavior an individual adopts in order to fit in within perceived societal norms.
One question I got at my inclusive design talk was, how I address it if I notice a participant obviously making an effort to mask during testing or interviews. I find this very delicate because of course, as a researcher, I want to get to the bottom of it and find out what my interviewees really think. But as a person, my ethical principles are to not make someone uncomfortable on purpose, so if my participants don’t feel comfortable unmasking and sharing their honest thoughts and feelings with me, then so be it. If they feel more comfortable showing up with a facade up, it is their good right to do so! I can try my best to make them feel comfortable and safe, but there is only so much trust you can build within a session. So I will take note of it, and not further press on it because: It’s just user research, at the end of the day it’s not that deep. (Fight me in the comments for engagement, if you disagree.)
What about UX research with no focus on disability status?
In my case, I grew aware of the influence it had on my interviews after I interviewed the same person a second time. The first interview was in person and in German, while the second one was online and in English, plus another colleague was there. The topic of the conversation started as something unrelated to the first conversation but soon developed some overlap. This is where I noticed that our interview participant downplayed certain aspects of their daily accommodations in comparison to what they had told me in the previous interview.
If you are in UX research or conducting usability tests, you probably already interviewed at least one person with a disability before. An estimated 15% of the world's population is living with a disability. But as mentioned above, most people have adapted their setup to their needs, preferences and for their own comfort. One very common example is simply cranking up the text zoom instead of getting prescription glasses.
And it’s not only you who may not be aware of it, your interview participant might also not be hiding it but may in fact not be aware that they have a disability. Think of late-diagnosed neurodivergence, POTS, and diabetic retinopathy (diabetes type 2 in general actually).
With acquired disabilities in particular, many people don’t realize the impact they have on their senses until they notice a drastic change, for example with diabetic retinopathy: It causes tiny damages on the retina which many don’t notice at first because the human brain does a very good job at automatically filling in the gaps. But once you look at an object you know well and it suddenly is missing a specific detail, that’s when you notice.
How to counter invisible stigma:
Unfortunately, there is no one specific trick to mitigate it in user research. But there are a few precautions you can take:
Listen to what people say. You know the drill: Don’t listen to seek confirmation, listen to understand. After that, enrich your findings with context from your due diligence desk research.
If you are researching disability accommodations in particular, read up online. In my case, I consulted medical journals for different eye conditions to develop an estimate of them before the interview. At least for eye conditions, I really like medical content to learn about them because medical research refrains from making absolute claims or blanket statements about symptoms as much as possible.
After that: prioritize the individual experience over the medical diagnosis.
Disabilities are so dynamic!
Everybody will have a different lived experience, and different setup of devices they use for work and leisure, possibly not even including any assistive devices, many people just go with the inbuilt features on their laptops and phones.
By now I have only talked to 2 individuals with the exact same level of sight (which is zero) but their experience of it and technological set ups were vastly different.
Play dumb: Now this is more of anecdotal advice, so take it with a grain of hesitation. Firstly it ties back into what I said above: Although you might go into the interview knowing the medical diagnosis and markers, don’t assume you know anything about it. The person in front of you is an expert on the lived experience with their disability, not you no matter how much you looked into it. This is why I like to say something along the lines of “Oh I read that this condition can manifest in this or that way, how is your experience of it?”
Be enthusiastic: I don’t hide it that I am fascinated by different eye diseases. Showing that you have a positive attitude towards your interview partner’s disability/diagnosis/condition can make them feel more at ease sharing personal experiences with you. Because it is very personal. Most settings don’t allow for diagnoses to be discussed in a lighthearted matter, and disability is still too often regarded as something that needs to be fixed. Being enthusiastic to learn more about it (while still being respectful, I cannot stress this enough!) can help participants feel more at ease discussing an integral aspect of their identity.
Respect the statistics: 15% The bigger your sample, the higher the chance of participants with disabilities being included. Unless you use a particularly inaccessible survey tool, then you by default will have fewer representations from certain access modes.
Invisible Stigma is a systemic issue. Especially if you grew up aware of the negative perceptions associated with the label of disability. There won’t be a definitive solution to it until disability status and other stigma markers are regarded as neutral characteristics with no relation to our identity at all.