The ‘guess who’ culture for Crohn’s — and why design ignores it.

Invisibility bias has long shadowed Crohn’s sufferers, meaning our inclusion for sufferers in society is largely unresolved. With the main symptom of IBD being bowel specific, why aren’t our toilets — particularly for male use — serving as adequate environments for IBD sufferers and how do we de-stigmatise the ‘guess who’ culture for sufferers in our own infrastructure?

Our lack of design is surprising, as Western culture has seen an uprise in Crohn’s Colitis cases; an autoimmune disease which causes inflammation of different areas in the digestive tract. In 2019, there was an estimated 1 in 650 people in the UK alone suffering from IBD related illnesses — in 2020, this had increased to 1 in 420 people with Ulcerative colitis alone. IBD can cause a wide range of debilitating symptoms with two main forms: Crohn’s and Colitis.

So, how does IBD effect genders differently in a public environment?

Cubical roulette.

On average, woman take 2.3 times longer statistically when visiting the toilet, whereas typical male journeys are quicker. However, for people with conditions such as Crohn’s disease, this is far from the average journey.

Excluding workplaces with non -gendered toilets, male toilets typically house 1 or 2 cubicles, without being occupied when needed. If a Crohn’s sufferer is an in dire need for the bathroom, which at the best of times is abrupt and difficult to make, and the 1 cubical in the male toilets is occupied then the Crohn’s sufferer is left with nowhere to go.

Accessible toilets have been at the forefront of social stigma challenges for IBD sufferers, most recently in 2019 when a story broke about one 21-year-old. Davis, who was fitted with a stoma after having her bowel removed due to suffering with Ulcerative Colitis, was questioned and accused of taking drugs after repeatedly going to the toilet due to her stoma care requirements whilst on a night out. The expectation of the bouncer was bias, as the only reasons that the bouncer could find for Davis frequency of using the toilets was illicit behaviour. This story emphasises a bigger bias facing invisible disabilities however it also highlights a new social change which is slow but nonetheless progressive. Two months later, Wetherspoons teamed up with Crohn’s Colitis UK to publicise a new initiative, installing a ‘Not every disability is visible’ signs their accessible toilet doors in every chain nationally.

The question is, how will this new initiative with a new visual aid effect the way society perceives invisible disabilities, and will this open a new tolerance to reduce social stigma?

Guess who.

Invisible disabilities are invisible since the person suffering with such disabilities often ‘look well’ and don’t display extreme physical ailments — to what society is used to perceiving as disabled. Sufferers can be all ages, meaning a 21-year-old male who on paper would appear ‘well’ would in fact be suffering from IBD symptoms.

An example is when my partner, who is a 28-year-old male who has suffers from Crohn’s was sitting on a bus at the time suffering from a flareup from the condition. He was publicly shamed for not giving up his accessible seat when asked to for an older woman when there was no accessibility or normal seats left on the bus. In turn, this exasperated by the stress he was going through and was forced to leave the bus, causing him to relapse and be given steroids to reset his condition when left on the street. Not to mention a fear of public transport.

A blind arrogance has been cultivated towards these issues. An invisible disability bias.

“I shouldn’t use a disabled toilet as I don’t look disabled…I’ll be judged for using them.”

I asked my partner, “How would you feel about using a disabled toilet?”. His answer: “That I shouldn’t be using it, in case I got judged for using them, which then makes me feel bad.”

It seems the social environment cultivated over his 10-year suffering from the condition has allowed for a social judgement being created around ‘non-visible’ disability bias. This social judgement in turn, self-afflicts a guilty condense. It’s the visual appearance and our association with the disabled amenity aesthetics which we feel need to match the person going to use such amenities. Almost like a game of guess who for stereotypes with disabilities.

18 going on 80.

“I feel old as everyone associates taking pills & doset boxes with the elderly.”

I undertook a client work placement as a student at Loughborough University in 2017, where we were looking to understand the behaviours and decision process behind customer consumption in the healthcare industry. My team & I found that one participant who suffered from Crohn’s disease was left feeling mentally ‘old’ as the activity of taking physical pills was commonly associated with an ‘elderly action’ — with the ironic reason behind taking medication was to make them feel ‘healthier’.

In society today, is health associated with ‘being’ younger or ‘feeling’ younger — and can conditions like Crohn’s disease change the social perception associated with actions typically taken by the elderly community including taking & organising medication and using disabled toilets?

So, what now?

Design plays an incremental role both in our building infrastructure and in shaping our social believes which have been intertwined into our workplace design. But what is the catalyst for social change? Healthcare brands sell us the idealistic notion that health means taking monthly vitamins to improve our ‘self-care’ and ‘wellness’. Make-up brands tell us a healthy complexion is paining a fake facade and using oils to cover-up ‘natural variances’ in our genetics.

Why can’t these industries change the narrative so that there is not one notion of what ‘health’ is in our society, so that office workers are liberated to see and believe there is unfiltered future for what health is — paving a visible road for invisible disabilities and acceptance in our future workplace design.

References

Crohn’s Colitus UK, charity website: http://s3-eu-west-1.amazonaws.com/files.crohnsandcolitis.org.uk/Publications/crohns-disease.pdf

NHS Crohn’s Colitus website: https://www.nhsinform.scot/illnesses-and-conditions/stomach-liver-and-gastrointestinal-tract/crohns-disease

University of Birmingham — Paper on ‘prevalence of IBD and covid-19 complications’: http://pure-oai.bham.ac.uk/ws/portalfiles/portal/96085056/apt.15769.pdf

News Article: Weatherspoons & Amber Davis: https://www.bbc.co.uk/news/uk-wales-49556333

Academic Journal; Westernized Diet is the Most Ubiquitous Environmental Factor in Inflammatory Bowel Disease by Mitsuro Chiba, MD, PhD Kunio Nakane, MD, PhD, and Masafumi Komatsu, MD, PhD1: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6326567/