Our #BeTheChange Campaign

On Wednesday the 22nd January, we launched our #BeTheChange Campaign at The Senedd in Cardiff. The aim of this campaign is to call for changes to be made in society – tackling everyday challenges that ostomates and more widely those with invisible illnesses may face.

We aim to lead the way nationally and for Cardiff to become the capital of the UK for understanding the needs of those with invisible illnesses. With this in mind, we’re asking for changes to be made in daily society including, new signage to be used on all public toilets, and working with Local Authorities across Wales to adjust waste collections in recognition of the issues people with a stoma face. We want to help educate people and raise awareness that not all chronic illnesses and health issues can be seen.

We provided a platform for a group of ostomates to share their stories and the challenges they face. A big thank you to David Bevan, Amber Davies, Allan Jefferies, Angelina Truman, Keith Thomas and Rachel Allen and Jake!

Take a read of their speeches below.

Amber Davies

My names Amber, I’m 22 years old and I’m a pretty busy bee;

I’m a student, I work, I do social media, I recently ran the half, I’ve done a skydive, I’ve travelled, I socialise, amongst many other things.

I also tend to experience a lot of discrimination…

So, let’s set the scene. We’re in a bar, with a group of friends, we’re having a couple of drinks, a laugh and a generally nice time. I’ve been back and forth to the accessible toilet a few times now and I won’t lie, I’m getting rather frustrated with my body – I just want to enjoy my night. I’m pretty used to this by now so have switched off to anybody staring at me or giving me funny looks for being back and forth so often.

A couple of hours later and, we’re ready to move on. But I’m still experiencing issues. The facilities aren’t great and I could really do with a hand. My boyfriend comes with me to help where needed. Somebody keeps trying to open the door making a stressful and difficult task tenfold worse.

When everything’s eventually sorted and we leave, we both get grabbed and pulled in separate directions accused, shouted at and threatened.

That’s the thing, I’m 22 years old and I’m a pretty busy bee; I’m a student, I work, I do social media, I recently ran the half, I’ve done a skydive, I’ve travelled, I socialise, and, I have an invisible disability.

Now, I know what you’re thinking, fair enough that scenario may have seemed a little sketchy, but, that isn’t my point. Having finally been given an opportunity to explain myself; I have an invisible disability, I have IBD and a permanent stoma.

No, not enough.

I was faced with even further accusation and disbelief. There is no way I was disabled I was definitely in that toilet dealing drugs or selling myself. I mean, what?! I had no choice but to explain again. This time, more graphically in hope of some acceptance and understanding…

I have had my bowel removed and part of it pulled through the wall of my stomach. Here is where my poo comes out of in which I have no control over. I have to wear an appliance to collect my waste but at times, the appliance just doesn’t play ball and I am faced with the trauma that is, leaking. When you grabbed me I’d just dealt with a leak and had to change my bag. Your facilities are pretty awful but I had poo leaking everywhere – I needed a helping hand and the only person with me to do so was my boyfriend who I must add, showed far more compassion than you are right now despite it being incredibly humiliating. I showed them a stoma bag and a disability card and went on with my explanation.

Still not enough.

If I were in a wheelchair or had a visible impairment with let’s say, a middle-aged female carer, would I have still received this reception?

Anyway, I was eventually let out. With no apology or no developed willingness to understand or learn.

I was diagnosed at a naïve age 13. I didn’t really know what was going on with my body but, society definitely confirmed that whatever it was wasn’t normal. I have grown up facing assumptions, discrimination, dirty looks and now this. This is the point where I decided enough was enough.

I used my voice and spoke only to receive hundreds of messages of people in similar scenarios who have faced and, continue to face discrimination of varying sorts. Some, worse than night in question this with stories of being thrown out or banned from establishments and handled with verbal and sometimes even physical abuse.

Disability and its needs come in various shapes and forms and it’s saddening that in this day and age we cannot see beyond the obvious. This is why we’re here today as representatives for people like ourselves who don’t go out and about because of fear of facilities or how they’ll be treated. This is simply not fair – absolutely everybody is entitled to be accepted and have access to facilities they may need. It’s all about making a noise, raising awareness and educating so that in the future, those people like ourselves can go out and about and live their lives to the full without fear.

So, I’ll say it again; I’m Amber, I’m 22 years old and I’m a pretty busy bee;

I’m a student, I work, I do social media, I recently ran the half, I’ve done a skydive, I’ve travelled, I socialise, and, I also have an invisible disability. And if one thing is for sure, I will not stop using my voice to raise awareness and make a change.

Keith Thomas

My name is Keith Thomas, I currently live in Llanelli and I am a bus driver for First Cymru in Swansea.

I’d like to start off this afternoon with a question… and that question is if you saw me go into or come out of a ‘disabled’ toilet today, what would your first reaction be? Okay – hold that thought.

Now I’d like you to look at the picture of me – by the way, that photo was shown on Loose Women last year… Now after having seen that picture, you see me going into or coming out of a disabled toilet, has your thinking changed?

In 2012, I lost my bowel to Ulcerative Colitis and now I have a stoma for life following a procedure known as an ileostomy. Every day I wear an ostomy bag to collect waste matter; I, therefore, require the space and additional facilities a disabled toilet provides in order to empty or change my bag. On occasions I have had to use a normal toilet cubicle; this is admittedly not impossible, but believe me, it’s certainly extremely difficult.

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.

Rachel Allen

I am the mother of a beautiful boy called Jake. Jake was born with a genetically passed down disorder called Hirschsprungs Disease. This develops around 6 weeks in the womb where the vile (the hairs along the intestines used to move waste along) do not develop properly, causing the effected intestine unusable and in Jake’s case needing all his large colon and 5 cm of his small colon removed. As a result, he lives with a stoma bag and knows no different. He is also tube fed and relies on medication 4 times a day administered through a mickey button directly through the stomach.

He is a happy, confident, sociable little boy and at present senses no stigma or judgement which for that I am thankful. 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 appear to have nothing wrong.

Entering disabled 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. It is reassuring to see some premises are now using signage stating that not all disabilities are visible but unfortunately in most places, this is not the norm. I feel the eyes staring at me as I usher my little man in with either a stoma bag change brought on by a leak or at worst not catch it in time and requiring a quick wash, change of clothes and stoma bag change. As you can imagine this takes time and a changing table of sorts which is another problem I face within most disabled toilets, where it is impossible to carry out stuff without leaving me to go to my car and do it on the back seats which as you can imagine is a nightmare. 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.

As a result of starting an Instagram page to promote awareness of our condition known as ‘adventuresofmummumandjake’ it was when I started to talking to other mums alike that I learned of facilities and aids to help at home with a child like Jake. What is most worrying is it took that to find out such essential information. Examples include entitlement of Disabled Loving Allowance and Carers Allowance and hygiene waste collection. With a stoma the waste created is far greater than those without one and as a result, we saw our household waste double on a weekly basis. Not all homes have indoor or outdoor storage for this. For us, we already used every space available to store not only Jakes stoma equipment but also his medicines and feeding tube equipment. The waste is extremely unhygienic and weekly trips to the local tip found there wasn’t a designated hygiene waste skip meaning it had to go unto unrecyclable waste. It wasn’t until I wrote an Instagram post about how stressful the situation was that a local mum said didn’t I know in Newport they had a weekly hygiene waste collection.

I couldn’t believe I had gone by that time, a year, without knowing that we were entitled to such a service. The process was fairly straight forward and since then they have not missed a collection. Unfortunately, this service isn’t accessible for all which seems cruel and unfair. Due to have a second stoma myself and through my little man I understand how much having a stoma can change how you live and how you have to adapt your environment to work differently. Hygiene waste collection is something all should be aware of and have support in getting.

I hope today will be the start of change and work towards bettering the society Jake is growing up in and enable him to uses the facilities he is entitled to with no stigma or judgement.

For those of you living with a disability here today, I am in awe of you and wish you the very best.

David Bevan

My name is David Bevan, I am retired and live on Gower. We live on a smallholding so there has always been a lot of physical activity. I have had a urostomy for the past 20 years. The operation was for the removal of my bladder due to cancer and was carried out when I was 60.

The urostomy operation removed my bladder and diverted urine from my kidneys to an artificial reservoir, made from a section of my small intestine, opening on to my skin surface. This is called a stoma.

The urine produced by my kidneys is collected in a plastic bag which is adhered to my abdomen.

I have to empty the bag fairly frequently as otherwise the bag will overfill and could peel off my skin causing a disastrous leak.

I have occasional problems with leakage due to the seal between the bag and skin dissolving.

The other problem is that the skin surrounding the stoma will break down due to the constant contact with urine. This causes the skin to become very inflamed, sore and weeping and very itchy.

If this happens, I have to change the bag at least once per day.

I have not let the stoma hinder my life. My wife and I have travelled to Sri Lanka, Thailand, Singapore, USA, Australia and New Zealand as well as most of Europe. We always split my ostomy supplies between our hold cases and hand baggage just in case bags are lost. This has happened in the past.

Until about 5 years ago, I also did yacht deliveries – picking up a yacht in a Mediterranean port and sailing it to a marina in Wales. Just imagine how difficult it is changing a bag at sea in a force 9 gale! It is even more awkward changing bag in an aircraft toilet!

On the subject of travel, I always carry a doctor’s certificate giving details of my stoma and the equipment I carry. This has proved very helpful when going through Security and Customs. I always have to have a ‘pat-down’ search but rarely have had a problem. In my experience, Israeli Customs were the most thorough but Australian were the least courteous

Normally, I will change the bag every 48 hours.

I routinely keep a complete changing set in my car together with spare underpants in case of leaks.

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 the new bag.

The larger area inside Disabled 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 Disabled Changing Rooms in shops.

Regarding the disposal of used bags and wipes etc. Originally, I was told that the only method of disposal was in the fortnightly black sack collection. However, I have recently phoned the Swansea City Council Waste Management Department and have discovered that they will provide special medical waste bags which will be collected weekly. Swansea do not advertise this service at all and it takes a very determined effort to find it out.

I have also phoned Carmarthenshire County Council who say they offer a similar service. I hope you will have found this of interest and will support our endeavours to make Non-Visible Disabilities more accepted by the general public.

Allan Jefferies

My name is Allan Jefferies. I am 59 years of age and live in Blaina, Blaenau Gwent.

I am retired having been made redundant in 2016 following almost 40 years working in local government.

On 28th January 2010 I was diagnosed with a 5cm, stage 3, cancerous tumour in my rectum.

By the end of July that year having undergone radio and chemotherapy and following surgery I was left with a permanent stoma or colostomy.

I am a cancer survivor, however my life changed completely as I now had to collect my faecal waste in a pouch attached to my abdomen. Whilst my stoma saved my life, living with a stoma is both physically and emotionally challenging.

My stoma nurse advised that I could obtain a RADAR key which would allow me access to a network of toilets for the disabled in order that, when I was out and about, I could use the facilities to change my pouch if needed.

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.

My first big outing was for my birthday in December 2010 when my wife, son and I came to Cardiff. I was comforted by the fact that there would be disabled toilet facilities readily available, and they were, for instance in the St David Centre and Marks and Spencer.

However, 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.

As time went on, I became an expert in changing my pouch and was able to use ordinary toilet cubicles when disabled facilities were not available. Whilst some toilet cubicles can be in a poor state with no proper seat, no door lock, no toilet paper and no bins for disposal of a sealed waste bag I have learned to cope.

As I have stated provision of suitable toilets for the disabled is not as widespread as you would imagine and in 2013 these types of public facilities in my local area were diminished as the Borough Council, for financial reasons, closed all public toilet facilities throughout the Borough. Since then 3 facilities have been reopened by volunteer groups. In my town of Blaina the public facilities remain closed. The Council produced a Local Toilet Strategy in May 2019, the interim progress report is not expected until the end of November 2021.

Whilst public toilet facilities may not be widespread throughout Blaenau Gwent the authority does provide a very good weekly nappy and hygiene collection service.

The lack of fit for purpose readily available disabled toilet facilities has not greatly affected me as I have been able to adapt to changing my pouch in whatever toilet is available at the time.

However, when I have used toilets for the disabled, I have been met with some disapproving looks from those with visible disabilities waiting to use the facility after me. Although no one has yet said anything to me you can tell by the looks and general tutting in my direction that they disapprove of an apparently non-disabled person emerging from the toilet.

I understand from fellow ostomates that I have met over the years, that they have on occasions experienced verbal abuse from those waiting to use the disabled toilet and been questioned over why they have been in there when they are clearly not physically disabled. Some who are quite strong characters have said they have given a good response, but others have told me they felt embarrassed and intimidated and have been reluctant to use disabled toilet facilities.

If a person with a stoma faces negativity and in some cases verbal abuse from others waiting to use the disabled facility they may feel afraid to use them, even though they have every right to do so.

This is something that can have a massive effect on an ostomates quality of life as if they are not strong outgoing characters they may withdraw into themselves becoming reluctant to go out in fear of looks, comments or questions over them using disabled facilities. Elderly ostomates may be especially vulnerable as in some cases they get their stoma in later life and this in itself can be a massive hurdle to overcome.

I am grateful to have been given the opportunity to become involved with the project to raise awareness around the use of toilets for the disabled that not every disability is visible and perhaps we can change the perceptions of those within the disabled community.

Angelina Truman

My name is Angelina I’m 22 years old and I’m the founder of Aura Clothing, a company that creates clothing for those with an ostomy. But I’m more than just that… I’m also a student, I’m a friend, I’m a sister, I’m a girlfriend….I’m a proud ostomate and I AM DISABLED.

I may not look like the typical disabled person but I have what is called a “hidden disability”, and it is just that…HIDDEN. Hidden from your eyes but it consumes me on a daily basis.

I was diagnosed with Crohn’s Disease at age 12, and just after one year of trying different treatments, I was told that this disease was far too aggressive and that I needed to have an ostomy. I was shown videos and pictures of young adults with ostomies having fun and doing normal things. I thought to myself “let’s give this ago, how hard can it be?” Little did I know that it would be the hardest transition I’ve ever had to go through mentally and physically. It’s hard enough trying to be normal in a world that revolves around the usual beauty standards. It’s hard enough having to fit in and act normal, it’s hard enough changing your life to revolve around your ostomy. And it’s even harder when people give you dirty looks or confront you when leaving a disabled toilet – which may I add I am completely entitled to use.

I’ve heard so many horror stories of ostomates (people with an ostomy) getting confronted when using a disabled toilet. As an ostomate, this saddens me to think that the general public can be so cruel. These stories have terrified me and caused me to never use a Disabled toilet again. I now use a public toilet, which causes me major anxiety. Firstly, there isn’t enough room in the cubicles to change your bag if needed and there isn’t much privacy either. When I’m in the cubicle doing my thing, I’m always aware of people around me. If I hear just 1 person in that toilet I tend to not even empty my bag because I’m scared that they would know. Don’t get me wrong, I’m one of those people that wears my bag loud and proud. In fact, I’ve started a clothing company to help ostomates and raise awareness. But sometimes, you don’t want to have to explain your situation to others, you shouldn’t have to. But when you’re being confronted by an angry member of the public you kind of have to defend yourself.

Using a disabled toilet is my right. And I feel like I’ve been stripped of that right because of the lack of education in the community. Because when people don’t see you in a wheelchair they assume that you’re perfectly fine… Well, I’m not fine, and I won’t be fine until I am able to use Disabled toilets without feeling anxious.

This panel of lovely people are the perfect example of what Disability can look like. We are all taught to not judge a book by its cover, yet this is still happening to us.

Let’s be the change that this world needs!