I wouldn’t say I had a typical upbringing - as the second of 6 children life for us was always loud, fun, and we were very lucky in many ways with our early childhood. I DID notice, in my early teens, that my stomach would bloat and become unbearably painful- I made my best friend leave many a party or night out when I couldn’t stand straight for the pain anymore. It never occurred to me to see a doctor about it, and I largely adapted my habits; learned what foods almost always led to trouble, not eating if I wanted to ‘do something’ that evening and eating Rennies at an alarming rate.
It wasn’t until my early 20’s and after leaving university (I studied fashion design) that I started to realise it wasn’t generally considered ‘normal’ to bloat that way, and that it was in fact really inconvenient when at work to have to either go home, choose not to eat at all or be off sick constantly - so I began seeing doctors. Lots of them. As any chronic patient will tell you - being young and female is 2 strikes against how serious ANY doctor will take you.
Eventually, an undiagnosed ulcer burst in my stomach in 2012 requiring life-saving surgery. I had classic ‘ulcer’ symptoms, and a camera was never used to check me because of my gender and age- bear in mind I saw more than 6 doctors over prolonged periods. Only 1 told me to persist until they had an answer, and they prescribed painkillers that are known to cause ulcers!
So, with a ‘diagnosis’ I thought I’d be recovering from the surgery and then would be ‘back to normal if not better’. That does almost make me laugh now - how silly of me, how unprepared, how ABLEIST my own thought process was.
So, when I wasn’t getting better, when I was struggling with nausea and pain and other delightful symptoms, I didn’t hold out much hope, but I was referred to a specialist at UCLH who quickly sent me for many tests, most of which gave some clues/ diagnosis.
The first was Gastroparesis, then came IBS, Diverticular Disease, Pelvic Congestion Syndrome… I had a diseased Gall bladder removed, a diseased appendix removed, and I now have a second exit from my stomach to my intestine that was created to help it drain.
In 2016 I was in the hospital for a prolonged stay due to pain before my appendix was removed.
A woman on my ward had survived ovarian cancer, but it had destroyed her digestive system, so she had a stoma, was receiving meds through a port in her arm and was there to be fitted with a port in her chest as well.
She founded a survivors’ community and sent her unused colostomy bags to charities around the world - a truly incredible woman. And yet she had to get naked every time the doctors came to see her. She was unable to wear ‘nice’ clothes. There was no choice, and little dignity.
I knew not only that I could help, but that I should have considered it before - didn’t my own clothes hurt me?! Didn’t I feel sloppy only wearing baggy clothing at home, or pushing myself to wear tight jeans and high heels to keep looking like I used to despite my discomfort?
I have worked in the fashion industry as a garment technologist for 12 years now - my whole career has been the construction and fit of clothes from high street to catwalk. I thought, surely, someone will be doing this already? In 2016 - no, they were not. Tommy Hilfiger was the only brand (and is still the biggest named brand) to make adaptive clothing. M&S dabbled briefly and then stopped.
Happily, in 2020 I know there are more and more brands starting to design adaptive wear or are building on their existing work- but Unhidden for me started on a hospital ward in 2016. This year, launching our website only a couple of weeks ago, I am reminded again and again of the inequality faced by people with Disabilities and the struggle of adaptive fashion.
Companies with vast resources, knowledge, creativity... companies with serious money who could put it to this use, that would help so many - and they don’t. They’ll hire a Disabled model and put them in non-adaptive clothing and then calmly never use them again because they ‘ticked that box’.
There are 13.9 million people with Disabilities in the UK alone, and the purple pound (Disabled spending power) is estimated at £247 billion.
So why are we still being ignored?
3 reasons, I believe.
- They have never hired us- and they know it. I have worked in A LOT of companies and I have never seen a visibly Disabled person on any creative team or in head office, anywhere. They wouldn’t be able to get in to half the buildings I have worked but they wouldn’t have even got an interview to start with and we all know why.
- Unit cost price would be higher because it would require more trims. (Never mind that they have access to the best resources, and it would not be as expensive for them as say)
- They are elitist, and in a lot of cases because they never SEE Disabled people - it doesn’t even cross their minds.
The most recent example I have of this; I posted in a WhatsApp group about Unhidden’s launch; a group of 200 fashion professionals. I had 3 people congratulate me. Moments later an UNLAUNCHED swimwear designer posted about their collection due out in February and 20 people piled in wanting to know more, see more, hear more, praise them for being sustainable - Unhidden is also sustainable although that is by far its least important aspect.
A bracing reminder to me of the challenge still faced by us, in a hostile industry that has never accommodated us, with media that uses us rather than including us.
Unhidden to me is about bringing our community together, but also about design that isn’t noticeably adaptive; ‘hidden’ alterations that allow the wearer to live a more normal, dignified life both at work and at home. I have so many more designs in my head that I hope to develop soon, and there are always more ways to be inclusive and add in more adaptations - the creativity within it is a challenge I thrive on.
We also hope to launch a service early next year to adapt our communities’ existing clothing - more fastenings, magnets, zips, Velcro, more cloth/less cloth - whatever they need so they don’t have to buy a new wardrobe and can keep well-loved clothing that will now fit them.
These alterations will be filmed and available for free so that we leave no one behind when it comes to accessing clothing, dignity, self-expression and style in a world that has so long not acknowledged us.#WeAreUnhidden