In this Blog, Michelle Rebello-Tindall, Autism Ambassador, illustrator and founder of Minecraft and Meltdowns
writes about the frustrations of the "invisible family".
As I fumble to get my RADAR key out of my bag I look around nervously. People start to notice that I’m walking towards the accessible toilets with my child. Her medical bag is a lunch bag because it’s insulated and, why not, she’s 9 years old and loves Lego® Movie. She’s walking with me, pushing her ear defenders closer to her head as we pass the ladies’ toilets. Suddenly everyone has been promoted to DWP assessor, silently scoring our points. Confrontation for me is unbearable so we move quickly, chatting away and pretending not to notice. I produce my key as if it’s an Olympic torch, a common symbol for all to understand, hoping that it justifies our right to be here. It was offered to us by the lovely team at Southampton Shopmobility, so that’s ok, right?
My daughter, Emily, is autistic and type one diabetic. This means she needs to inject insulin after her immune system rudely killed her pancreas. She struggles to process sensory information so finds smells, crowds and loud hand driers are unbearable. She also struggles to recognize the need to use the toilet so every trip is a frantic dash. Her diabetes only adds to the drama. But it’s ok because I’ve mapped out all the public loos before I’ve even entered the shopping centre.
My whole family have invisible disabilities. My other 2 children and myself are also autistic. There is also anaphylaxis and ADHD thrown into the mix. We ignore the looks and tuts but talk about it at home. We prefer the public toilets with the ‘not every disability is visible’ sign. They are the one place in the busy shopping centre or restaurant where we can just take a 5 minute breather. In that space we can control the amount of noise and interaction. We can see to any embarrassing accidents, spillages or administer medicine in private. It enables us to go to public places knowing that there’s a tiny respite to reset and carry on with our day. Days out for us are infrequent. Often we are invisible because the public won’t see us hiding at home. It’s less like the O2 arena at home.
I won’t always be there support my children when they need to use accessible facilities. My eldest, Lauren, is 18 and in 2018 had an awful encounter at Southampton Central train station. She had opened the door with her RADAR key and after she closed it she heard a knock. Outside was a member of staff who had felt the need to make Lauren justify herself. She thought the staff member was trying to help so mentioned that the tap didn’t work. They replied sarcastically, “well, it works in there” and pointed to the ladies’ toilets. In her fear, selective mutism gripped Lauren’s voice and all she could do was run past the staring faces and to the train platform where she stood humiliated, alone and bursting to use the loo. She still looks over her shoulder every time she uses the public toilet. Later I couldn’t complain because she was unable to look at the uniform they were wearing.
Why has society become a place of judgement and entitlement? Why can’t people support others without assumption? Imagine you’ve gone to a private place only to have someone knock on the door or stare as you walk in. Accessible facilities are there for those who need it and no they should not be abused. But people should be more aware of what disability or difference really means. Accessible toilets are there for the person with the knee support under their trousers who doesn’t have enough room to get the door closed, the person with a bowel condition who deserves dignity, the person who can’t cope with the claustrophobia of noisy, pushy shoppers or the person seeing to a medical procedure with privacy. Just as equally as the visible person who uses a wheelchair, scooter or stick. Let’s be a little kinder to our fellow citizens and think before we act. On the one day that my family has to go out for school uniforms, let us regulate our day so we can get through it and return to our invisibility at home.