This post was originally published on Firefly Community. You can see the original here
Years ago, we had a disastrous meal out. Pearl was present but not yet born, perhaps my reactions to it were coloured by the 8 months of pregnancy hormones sloshing around my body.
Four of us, Father-to-be of Pearl, a small Rab and preteen Glory on holiday. Visiting a highly recommended gastropub. A treat.
As this is not trip advisor and was eleven years ago I shan’t share the location.
The manager did not seem keen on customers, the service was at a snail’s pace, nothing on the menu appeared to be available, and according to F-t-boP, the floor in the mens toilets was not safe for sandals wearers. Lovely.
As we sat fuming a couple arrived. A man, in a wheelchair with a neurological condition, and his partner. As we longed for distraction from the diabolical service, and we are inveterate people watchers, we were fascinated to see him using his computer to communicate. Ten years ago this was even more unusual than it would be today.
Of course, I mentioned it to the children, I was a Speech Therapist who specialized in neurological conditions, it was a break from moaning about the service, and it was educational.
After an argument about whether ice cream was available on its own, as well as with apple pie, we paid up, relieved to be escaping. The children got up and ran over to the couple and stood smiling at them shyly and looking at the computer. I quickly joined them
“I’m sorry they are interested in your communicator”
Mrs. scowled angrily at me.
“We are trying to eat”
We left, tails between our legs, a horrid end to an awful trip.
I’ve thought about this incident a lot since having Pearl. At the time I was deeply hurt, couldn’t they see we were really interested and trying to make a connection? Now I think I was probably unforgivably ableist.
Does every trip out for a disabled adult or child have to be an educational experience for society at large?
Do ‘the disabled’ (and if you hear anyone refer to a people group in that way, draw your own conclusions) have a responsibility to be charming, well presented, and approachable at all times? Should they be expected to represent not just themselves, but the whole disabled community every time they venture out to the supermarket? Hell no.
Personally I want the freedom to be messy, tidy, made up, fresh faced, happy, miserable, charming or sweary as the mood takes me. If I become disabled (and a fair percentage of us will, through ageing alone) I don’t think that is going to change.
The first time we had personal experience of this was during Pearl’s statementing process. I was speaking to the lovely Educational Psychologist and telling her I was fearful that Pearl’s mainstream nursery would struggle, as they had no experience of disability.
Her response, that it would be a very good experience for all of them, was no doubt true, but not what I wanted to hear.
‘I don’t want her to be a poster girl for disability, I just want her to be a little girl”
I told Father of Pearl when I got home.
Like it or not, wherever we go, whatever we do, we do attract interest. Admitedly this is added to by Pearl patting people on the shoulder or grabbing women’s handbags (I taught her well…)
So how do we deal with it?
I do not want to sit at home avoiding stares and questions. Nor do I always want to explain Pearl’s communication book or diagnosis, but I would rather she was out there in the world, than tucked away out of sight.
I suppose a balance has to be struck
A wise researcher once asked me what I wanted the world to be like in terms of inclusion.
“A CBeebies world” I answered.
Shortly before Pearl was born, thanks largely to Something Special and Mr Tumble, different abilities have been very well represented on childrens BBC. In all CBeebies programmes there is a huge range of children, glorious to behold, with frames, crutches, white sticks, hearing aids and all manner of genetic conditions. Graduate to adult TV and there are articles on how inclusive this soap is to have this or that actor, with a disability. Not on CBeebies. They are just there. No fanfare, no overt educational message, just included.
That in the end is what I want for my Pearl, her friends and the Pearls of this world.
Not the constant requirement to be an ambassador for disability.
A CBeebies world.