I have multiple chronic conditions and most of the time these are completely invisible. Whilst walking can sometimes be painful for me, it does not compare to the agony I am in when I have to stand still.
I may not appear to look weak, but I am. Most days I cannot stand in one position for longer than a minute without having to sit down. I am also more likely to have seizures when tired, and standing exhausts me.
We all know the frustration of having to queue to use the toilet, but seeing a long line at the ladies fills me with dread because of my inability to stand. When this occurs I use accessible toilets but I often feel anxious about doing so.
I have never used an accessible toilet without getting some kind of reaction. Not only do people roll their eyes and stare, they look me up and down as if they are searching for which part of me is disabled.
A few weeks ago I was having a particularly bad day, my legs were very weak and I knew I would not be able to walk up and down two flights of stairs to use the toilets at the museum I was visiting.
“Are you looking for the toilet?” asked a member of staff seeing me walking towards the accessible toilet. “Yes, is this one not available?” I replied. “That toilet is for disabled people, the ladies are just down those stairs.”
I could have lectured this person all day long, but simply said “I am” and walked into the bathroom.
Reactions like this make me feel incredibly self-conscious when I need to use accessible toilets. I am always anticipating that someone will make a comment and this makes me feel on edge.
The idea that disability is always visible is very common, I cannot tell you the amount of times I have been told that I do not ‘look’ disabled. Not only is this incredibly offensive, it is also ironic.
I believe that disability is socially constructed meaning that I am disabled by people’s attitudes and access barriers, rather than my medical conditions. Assuming I do not need to use an accessible toilet because I look a certain way is what is disabling me, rather than the fact I struggle to stand.
It is important for people to understand that whilst accessible toilets are designed with wheelchair users in mind, they may also need to be used by people who have invisible conditions.
I asked a good friend of mine for her opinions on this as a wheelchair user, she said: “Assuming that a disabled person doesn’t have access or support needs can be as disabling as doing too much for us without ever asking if support is needed. Research shows that there is much ignorance about the lives of disabled people – we should never assume.”
Supermarket chain ASDA addressed this very issue recently by changing the signs on their accessible toilets in stores across the country. In addition to the wheelchair user symbol, they now features two figures without mobility aids. The sign also says: ‘not every disability is visible’.
They were inspired to do this by five-year-old Evalynn Glennester who has autism and ADHD. As she left the Newark’s stores accessible toilet two customers questioned her saying “You don’t look disabled.”
Evalynn needs to use accessible toilets because queues and crowds of people (as well as the noise of the hand dryers) can cause a sensory reaction.
I think it is important to recognise that comments like these do not always come from those without disabilities, one of the people who questioned Evalynn was a wheelchair user. Personally, I always find derogatory comments made by disabled people much more hurtful because they know how it feels to face discrimination.
The last thing I want to do is offend wheelchair users as I know the majority are very understanding. But I feel the need to highlight that people with hidden conditions can also experience bad attitudes from other disabled people and this is incredibly isolating.
Instead of questioning people and accusing them of misusing accessible toilets, we need to assume people who use them need to, even if they do not ‘look’ disabled. Being questioned can be humiliating and people with invisible conditions should not have to justify themselves.
ASDA’s new scheme may seem like a small step, but this little sign represents something huge – it is challenging people’s perceptions of disability.
This post was guest written by Alice Kirby.
Alice is a disability rights activist, journalist, and co-founder of Disabled Survivors Unite. She is passionate about social justice, politics, and intersectional feminism. Alice lives in Sheffield, South Yorkshire.
You can follower her on twitter @Alice__Kirby