Accessibility and Clothing Design (Trigger warning: cancer, stoma)
In 2014 my lovely late mum was diagnosed with bowel cancer after many years of ignoring symptoms, sticking her head in the sand, and hoping it would all go away on its own. Unfortunately, the advanced nature of her illness meant surgery resulting in a permanent stoma bag (ostomy bag), which for those who don’t know, is a medical device used to collect bodily waste through a surgically created opening in the abdominal wall. Even above the need for radiotherapy, for her this was the most traumatic part of her illness, although she came to accept it as a small-ish price to pay, that many people both adults and child, incorporate into their daily lives as part of living with chronic conditions such as Crohn’s Disease and ulcerative colitis.
Once we were passed the initial shock associated with her diagnosis and surgery, the very real issue of clothes and what to wear to accommodate the bag while maintaining her dignity, allowing her the maximum independence, and feeling as good as possibly, became the next challenge. Even 10 years ago, there was nothing on the high street specifically designed for people like my mum, and we had to get creative with our own needle and thread or shop from specialist shops (hint, sometimes expensive and sometimes not the prettiest).
All of this to say that during a recent reconnaissance mission in Primark, which to me is always a joy anyway, I was delighted to see that in the women’s section they have launched a collection of around 50 pieces of adaptive clothing, with magnetic fastenings, poppers, access for feeding tubes and medical ports, discrete pouches for stoma bags, and cropped designs and zippers on sleeves to improve safety for wheelchair users. This was designed in collaboration with Victoria Jenkins, founder of the brand Unhidden – and they all look like items of clothing that anyone would be happy to wear, both casually and in the office. I’ve also seen that M&S have recently released a collection of underwear specifically for those with ostomies – I understand this came as a result of M&S colleagues living with stoma bags highlighting their specific needs to the company, who then collaborated with Colostomy UK to create the designs. I can only hope that these initiatives are expanded into the men’s section, and advanced by other high street vendors, at pace.
People with stoma bags also need to consider the issues of toilet facilities extremely seriously, and lack of inclusive facilities is a physical and psychological barrier to living life to the fullest. I am an advocate for having sanitary waste bins in both male and female toilets for the benefit of trans-men, and any man using sanitary protection. Accessible toilets in workplaces and public buildings are required to have sanitary waste bins suitable for stoma bag disposal. This is part of UK Building Regulations and accessibility standards (Approved Document M and BS8300-2:2018) If your workplace does not have a suitable bin, you can:
• Use a disposable bag and place it in the general waste bin.
• Request your employer to provide a clinical waste bin or access to a disabled toilet with appropriate facilities.
• Carry a RADAR key to access public disabled toilets when away from your desk
Between 160,000 to 200,000 people are living with permanent stomas in the UK, with around 21,000 undergoing stoma formation surgery each year, and its imperative that they be enabled to undertake whatever daily activities they wish to engage in. I’m a firm believer that disability should NOT be viewed not as an individual “them” problem, but as a result of barriers in society – lack of accessible environments, inclusive institutions and supportive attitudes – an “everyone” issue. In other words, the social not medical model. Let’s challenge and petition our favourite clothes shops to become more accessible, and demand better for our friends, colleagues and loved ones.
Gill Edwards, WUN Advocate, Skewb.
Colostomy UK – A UK charity supporting people with a stoma
Bowel Cancer | Bowel Cancer UK
Bowel cancer (including rectal cancer and colon cancer) | Macmillan Cancer Support