What does it feel like to be tutted at and criticised for using the 'wrong toilet'? A parent shares the way her daughter who suffers with an 'invisible disability' has been treated.

My eight year old daughter has both Asperger's and constipation with overflow soiling. I bet you can already picture the impact of that particular combination on our lives! This year we went as a family to a well known music festival, which of course meant portaloos. We agreed that due to her massive anxiety about the confined space; her hypersensitivity to smells; her worry about being rushed on the loo and her need to either get in there super fast or to sit on the loo for ages and ages...she should use the disabled loos.

Girl on a unicycleFinding a suitable loo 

Now, on first sight our daughter doesn't 'look disabled,' and we've had many a tut and a shake of the head when we exit disabled loos out and about. But, after lots of chivvying, we persuaded her to go to the disabled portaloo which was in a separate space from the other loos and which were all guarded (I suppose 'attended' is the actual term) by a staff member.

We've had many a tut and a shake of the head when we exit disabled loos out and about.

Encountering negative attitudes

Each and every time we went we were stopped, informed in loud voices that these loos are for disabled people, and pointed toward the main bank of toilets. Each time I had to explain that she has autism (too many blank faces when I've said Asperger's in the past) and that she can't use the main toilets.

The notion that this girl who was walking around could possibly be disabled in any way was alien to the staff.

Each time she was allowed in, sometimes immediately, sometimes with a friendly smile, but mostly with the attitude that they were doing her a favour and we shouldn't really push our luck in the future. Every time she needed the toilet we did this conversation, in public, with strangers. She was mortified. And very stressed out.

Hurtful comments

An interesting twist was the looks and mumbled comments we received from other disabled people in the queues. The 'proper disabled people' and their carers. We were told we were in the wrong queue and that other people should be allowed in front of her. I appreciate that disabled loos should be protected for disabled people and that people had a job to do, but clearly the notion that this girl who was walking around could possibly be disabled in any way was alien to the staff. She did try a normal sized loo after one particular comment from someone in the disabled line, ended up frozen in a panic attack, had to be lifted out of the cabin and threw up from the stress.

What’s the answer?

So, what's the answer? Raising awareness I suppose. The issues is that my daughter doesn't want everyone knowing her business. She's extremely private and found having her diagnosis and medical issues discussed repeatedly with strangers to be very embarrassing. Perhaps a card (or for children a badge) would be a good idea? Maybe I'll make her one in time for our next music festival at the end of the month.

Join the campaign for better signage on accessible toilets (led by Crohn's and Colitis UK)  

Accessible toilet sign

A stock image has been used for the child's photo in this blog.

If you would like to share your story, please email alina@eric.org.uk