It is a powerful word, ‘disabling’. By its own definition, it would mean that someone who is ‘disabled’ lacks the ability to do anything. That is quite a frightening prospect for anyone.
But it is the process of ‘disabling’ which really interests me. Someone or something must have been the source of the disability. Is it the condition itself that forces the person in a wheelchair, or the rampless bus which the person can’t board, or is it the people who stare at the limbless man, the almond eyes, the slurred speech? What or who is disabling?
Our daughter, Trudy, had low muscle tone when she was younger, a condition associated with that extra chromosome which keeps rearing its ugly head. She couldn’t sit in standard wooden high chairs (popular in restaurants and pubs) without sliding through it like jelly and there was no chance we were going to feed her safely. So, we had to phone ahead to make sure that they had a plastic high chair with a cushioned insert and a bar between the legs. These were specific requests but, if they didn’t have one, we couldn’t go.
Trudy wanted to start gymnastics but we had to get a letter from her paediatrician to say that it was safe for her (appointments with paediatricians are not easy to get). She wanted to do dance classes but she had to wear tap shoes. Has anyone tried to get a hypotonic ankle into a tap shoe?! We started swimming lessons but the instructor said that we couldn’t go in with her because she was in the higher age group. I stated quite politely that she would drown if we didn’t go in with her. Needless to say, he let me in then. And then there’s childcare. We can’t just send Trudy to a holiday camp or a babysitter without having an in-depth conversation first in which we dissect and analyse Trudy’s needs.
Some of these things have to be in place to make sure our daughter is safe, like the paediatrician’s letter and the pre-activity chats. But the smart-looking high chair that doesn’t support the baby or indeed the backless swing at the park lead us to a swift conclusion: We can’t go out.
We can’t go to the playground because our child will just have to sit there watching the other children play, and that’s not fair. Have you ever wondered why there are few disabled people in parks? Lack of accessible equipment is a major factor.
We can’t go to the cafe because they don’t have the right equipment to feed our child safely.
We can’t go to that concert because our children can’t queue or stand the noise.
Or very sadly, we can’t go out because they’ll stare.
So, what is disabling our daughter? Well, it’s a combination of things. Her Down’s Syndrome prevents her from understanding, which means basic excursions are a challenge. The wrong equipment or the crowded places are an issue. But for the people who stare, who don’t understand that she is finding it difficult to wait or really doesn’t want to move, well, they’ve really no excuse in my opinion.
A person feels disabled when they can’t access the most basic of places such as the bus or the shops. So the buses have ramps and the shops have wheelchair-friendly trolleys, but not always. Blue badge users can park closer to shops but, who hasn’t been guilty of parking in a disabled spot when in a hurry?
A person feels disabled when there are too many barriers to doing what they want to do, like dance or gymnastics or swimming. Parents give up because there are just too many forms to fill in and nobody seems to read them anyway.
A person feels disabled when normal avenues are not available to them such as mainstream education or employment. Children are turned away from schools because they will be ‘detrimental to other children’*. Adults can’t get jobs because it requires just too much effort to adapt the workplace for a wheelchair user or a person with learning difficulties.
There is some great work out there and some great legislation around disability rights but, perhaps if we started considering the possibility that people are not ‘disabled’ but ‘enabled’, we might not assume what they can’t achieve and start concentrating on what they can.
*Standards in Scottish Schools Act, 2000