A research study conducted by the Crohn’s and Colitis UK charity was published today, the study looked into the discrimination experienced by people suffering from invisible disabilities. This is of particular interest to Stripy Lightbulb and myself as an M.E./C.F.S. patient as M.E./C.F.S. is an invisible disability. The study concluded that Crohn’s and Colitis patients experienced discrimination when attempting to use disabled toilet facilities. This experience is not limited to sufferers of Crohn’s and Colitis.
Have you ventured to Waterloo station in London in the last decade or so? Have you noticed that the disabled toilet is on the platform level and the public toilet facilities are down 2 flights of stairs? I have and it gave me anxiety last month. I’ll explain.
In the past 6 months or so I have visited London more than usual for business. I usually force myself to use the public toilet facilities if necessary as I am always aware of disbelieving looks and stares. I do not look like there is anything wrong with me. However, my health was already a bit ropey when I set out on the day’s journey and it was something I had to consider on the train journey into Waterloo. I knew my Mum would be using the disabled facilities and had to decide whether I would do the same. As is usual for me, with my advocacy head on, I started a Twitter conversation.
So. My mum uses a walking stick to stabilise herself when she is out and about due to her arthritis. I have no outward sign of disability. When we get to
#Waterloo, my mum will use the platform level disabled loo and I will have to go down 2 flights of stairs to get to the public loo. I could fight for the right to use the disabled toilet but….. I don’t have the energy to argue.#invisibledisability#mecfsReply:
– Do it, lovely. They’re not allowed to question you. I’m in London myself, today, and have my stick, but sometimes I don’t and I’m past caring. Don’t make yourself feel awful because of ignorant strangers. Your health and wellbeing is more important. Don’t knacker yourself out x
Thanks. I know you are right but I could do without the stress today x
Reply:
I don’t know if I’ve just been lucky, but I’ve never been questioned at the station. I just take a deep breath, don’t look at anyone, and go in. If someone does ask, your mum can tell them while you’re in there x
Having an invisible disability means having to make conscious decisions about things that fit and healthy people take for granted. As it was, I did use the disabled toilet purely because I didn’t have the energy to be stubborn and people-please. The energy required to go down those 2 flights of stairs would have impacted on the reason I had travelled into London in the first place. For a business lunch. Saving energy on going down and then up 25 steps was the difference between being able to communicate, stumbling over words and losing my train of thought later in the day.
This was only the 2nd time in my disabled life (12 years) that I have used disabled facilities, not because I wouldn’t benefit from using them, but because being on the receiving end of stigma is not worth it for me personally. If I am too unwell I simply don’t leave the house. As it was, I received disbelieving looks from the woman stood behind me in the queue. It was low-level stress I could have done without. I am disabled. I have also chosen to not have a blue badge because I don’t want to have a stand-up row in a car park with an ignorant person. I choose to make myself unwell instead by having to walk further to get back to my car. You can’t see that my legs feel like lead, that my muscles are tremoring, that my heart is beating so fast I feel like I am going to have a heart attack, and that I feel sick. I ‘look fine’. You don’t see me when I am collapsed at home after a 30- minute shopping trip or in bed 2 days later when my 30 minutes of ‘normal’ catches up with me.
The research study states that –
90% of people think they are helping society by challenging people who don’t ‘look disabled’. More than one in ten would confront someone using a disabled toilet if they didn’t show any visible signs of a disability’.
Patients with invisible disabilities already know that, that’s why we are incredibly wary of using facilities that were designed and built to make our lives easier. Not all disabled people use mobility aids. Get aware.
