Meet the panel
We are calling for changes to be made within society. We want Wales to lead the way nationally and for Cardiff to become the capital of the UK for understanding the needs of people living with a stoma and more widely invisible illnesses.
Stoma since 2015 due to Ulcerative Colitis
“Recently, I encountered a particularly bad experience at a pub chain and was wrongly confronted and accused by door staff of using the accessible toilet for inappropriate reasons. It’s great to be involved in tackling the stigma and difficulty of having a stoma and/or hidden disability by taking on key issues such as changing toilet signage and developing specific waste collection services in order to better the lives of people living with a stoma.”
Stoma since 2010 due to Crohn’s Disease
“I’ve heard so many horror stories of ostomates being confronted when using an accessible toilet. As an ostomate this saddens me to think the general public can be so cruel. These stories have terrified me and caused me to never use an accessible toilet again.
Let’s be the change that this world needs.”
Stoma since 2010 due to Cancer
“Whilst having a stoma can be classed as a disability under the Equalities Act, I have never considered myself as having a disability, just having a different way of going to the toilet. It soon became apparent that suitable toilets for the disabled are not provided as the norm for instance in pubs and restaurants. As a result, I began to choose where I had an outing to ensure that I could access suitable disabled facilities.”
Stoma since 2000 due to Cancer
“I have to empty the bag fairly frequently; and will change the bag every 48 hours. Bag changing takes about 15 to 30 minutes and, if there has been a leak, requires me to undress to remove wet clothing, as well as to fit a new bag. The larger area inside accessible toilets is therefore very necessary as is a water supply to enable me to clean up. My wife, who also has a non-visible disability, has had adverse comments about ‘jumping the queue’. She also has had problems when requesting use of accessible changing rooms in shops.”
Rachel (Mum) and Jake Allen (Son)
Stoma since birth due to Hirschsprungs Disease
“What worries me as a parent of a child with a stoma is the society we live in where everyone is quick to judge and comment particularly when looking at Jake who appears to have nothing wrong.
Entering accessible changing rooms in shops and toilets, it may appear to some I am just doing so because I have a child and it’s easier, believe me when I say, I would give anything not to have to use these toilets.
Having the correct signage would take away the stigma and teach people to respect one another for if you don’t know or live with someone with a disability, I understand it can be hard to relate.”
Stoma since 2012 due to Ulcerative Colitis
“Our aim is to educate the public and change attitudes; hidden disabilities are just that – hidden, not non-existent. We want to open your eyes to what thousands of people go through every day.”
On the 22nd Jan 2020, we launched #BeTheChange campaign at Senedd, Cardiff . The launch was opened by the campaign’s sponsoring Member of the Senedd, Jenny Rathbone, followed by speeches from our Managing Director Mat Stratton, our panel members who make up the action group and Cardiff Metropolitan Graphic Communication Students, who are designing the toilet signage.