About the campaign

Inspired by the fantastic young campaigner Grace Warnock, Crohn’s & Colitis UK launched Not Every Disability is Visible in 2016. We asked the UK’s major supermarkets to change their accessible toilet signs to highlight that Not Every Disability is Visible.

Thanks to our campaigners, nearly 2,500 branches in the UK’s five leading supermarkets, Asda, Morrisons, Tesco, Waitrose and Sainsbury’s, changed their signs nation-wide. In 2017, the campaign was expanded to travel hubs, with 15 of the UK’s major travel hubs installing the signage. The campaign continued to gain momentum, 150 shopping centres, among others, also getting onboard. (1-3)

We know these signs make a real difference to the lives of people with Crohn’s or Colitis. Over 80% of people with the conditions felt more comfortable visiting places with the Not Every Disability is Visible signs installed (4).

However, we also know that more needs to be done to ensure the signage is accepted as standard, so we can tackle this stigma once and for all.

One of the major anxieties for people living with Crohn’s or Colitis is being refused toilet access or being confronted as to why they are using a ‘disabled’ facility, and it’s easy to see the reason why (5):

  • 1 in 2 people have received negative comments for using accessible toilets (6)
  • 29% of people have been refused access to an accessible toilet because their disease isn’t visible (6)

95% of our supporters with Crohn’s or Colitis feel that the public has limited to no awareness or understanding of the conditions (7). They believe that if there was more awareness of these conditions, the public would have more understanding of the symptoms, which could help people with Crohn’s or Colitis feel less embarrassed (7).

What's our next mission?

With your help, we can achieve even more. This year, in partnership with Janssen-Cilag Limited, Not Every Disability is Visible is focusing on restaurants and pubs, encouraging them to make a positive contribution by changing their accessible toilet signage. 75% of people with Crohn’s or Colitis make choices about which restaurants, pubs and cafés they visit based on the accessibility of their toilet facilities (8).

Living with Crohn's or Colitis

Crohn’s and Colitis are a hidden – and growing – health crisis. It’s likely someone you know has one of these invisible conditions – More than 300,000 people in the UK have either Crohn’s or Colitis, but the real number could be almost double that (9).

When you have Crohn’s or Colitis, your immune system doesn’t work properly. Your body starts attacking itself, causing ulcers and inflammation in the gut. They don’t just affect the gut but almost every part of your body and every aspect of your life: from your joints and digestion to your energy levels and mental health (10).

But too few people who are unaffected by these conditions understand how devastating their effects can be (8).

  • 16% of people were made to feel worthless or ashamed by the public for using an accessible toilet (8)
  • 47% have experienced mental health issues due to their Crohn’s or Colitis (7)
  • 81% of people felt their condition impacted their ability to socialise (8)

It leaves many people struggling emotionally and psychologically, not just physically – managing a myriad of symptoms which can prevent them from leading normal lives. With many of these symptoms “invisible” and manifesting internally, it can appear that someone looks healthy, but they are in fact incredibly unwell. This creates stigma and misunderstanding surrounding these diseases with thousands of people suffering in silence (10).

We need to challenge this stigma. We need to stop people facing discrimination when using accessible toilets which can be vital for them in managing their condition and living a full and active life.

  • For people with Crohn’s or Colitis, 61% of negative experiences when using an accessible toilet included verbal and/or physical abuse (8)
  • 93% of people who said they would challenge a healthy-looking person for using accessible toilets because they believe they are ‘standing up’ for the rights of disabled people or that it’s ‘not fair’ on everyone else (11)
  • 81% of people with Crohn’s or Colitis think that the public have little understanding of the conditions and are quick to judge those living with invisible conditions (8)
  • More than half of the public said they were aware of Crohn’s and Colitis, but only 9% of these could correctly identify the five main symptoms of the conditions (11)

1. Crohn’s & Colitis UK. Supermarkets. Accessible at: https://www.crohnsandcolitis.org.uk/get-involved/campaigning/accessible-toilet-signs/supermarkets. Last accessed March 2019. 2. Crohn’s & Colitis UK. Travel with IBD – List of travel hubs. Accessible at: https://www.crohnsandcolitis.org.uk/get-involved/campaigning/accessible-toilet-signs/travel-with-ibd/list-of-travel-hubs. Accessed March 2019. 3. Crohn’s & Colitis UK. Have your say: Not every disability is visible. https://www.crohnsandcolitis.org.uk/news/your-views-on-not-every-disability-is-visible. Last accessed March 2019. 4. Immunology_DoF_30Jan2019_MI_PC_002 (unpublished data from Crohn’s and Colitis UK’ Not Every Disease is Visible Campaign Questionnaire, August 2018). 5. Immunology_DoF_25Jan2019_MI_PC_001 (unpublished data from Toilet Consortium UK’s 2017 Survey, July 2017). 6. Immunology_DoF_25Jan2019_MI_PC_002 (unpublished data from Crohn’s & Colitis UK’s 2017 Annual Survey, March 2017) 7. Immunology_DoF_19MAR2019_PC_004 (unpublished data from Not Every Disability is Visible 2019 Patient Survey, March 2019). 8. Crohn’s & Colitis UK. About Inflammatory Bowel Disease. Available at: www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease. Last accessed March 2019. 9. Crohn’s & Colitis UK. Crohn’s & Colitis Awareness Week. Available at: www.crohnsandcolitis.org.uk/get-involved/lottery/crohns-and-colitis-awareness-week Last accessed March 2019. 10. Immunology_DoF_30Jan2019_MI_PC_001 (unpublished data from Crohn’s & Colitis UK’s 2018 Annual Survey, March 2018). 11. Immunology_DoF_08MAR2019_PC_002 (unpublished data from Not Every Disability is Visible 2019 Public Survey, March 2019).