What does it mean to be disabled? To not be-able? Able to what? It’s such a broad and ugly term. I’d guarantee that any of the disabled tennis players at this summer’s Wimbledon are able to beat me at tennis. And I’d guarantee that every athlete at the Paralympic Games is able to beat me at any given sport. I mean compared to Olympic athletes, ‘able’ people are severely less than able. Really if we are to class people as ‘dis’abled, we should recognise those who are ‘more’abled than us?
I was once at some training where someone asked, ‘What would you call a child with Down’s Syndrome?’ The answer was one of the most simple answers you could possibly ever think of: ‘their name’. Obvious isn’t it!? There are only a few exceptions to the rule. For example, if you meet a man with a seagull on his head… he’s called Cliff. If you meet a man with a spade on his head… he’s called Doug.
I’ve been thinking about disabled parking and the Blue Badge Scheme. Isla by standard definition isn’t ‘disabled’ in that she is able-bodied and doesn’t use a wheelchair. Fingers crossed she will never need one. We do however have a Blue Badge. Isla can walk, but she can’t walk safely through a car park on her own. Being close to the entrance of where we’re going is great for Isla as she loves to be independent and being able to walk there herself is important. Due to hyper-mobility Isla has orthopaedic boots. In these boots every 1 step is the equivalent of 5! They’re great for helping her develop her muscles and give her the support she needs but again it means she can’t go far without wanting/needing picking up… and she’s getting heavy. The defibrillator we have to carry around is pretty bulky and also very heavy to carry around for a long time. The other crucial factor in why it’s useful to be close to the doors, is that we have oxygen in the car in case Isla has a seizure. We could cart the oxygen round with us, and we do when we suspect a seizure is imminent (as best we can guess anyway) but getting an oxygen tank out of the car requires room and it’s pretty heavy! Certainly wouldn’t want to bump a precious car doing that. Some people are obsessed with their cars and keeping them safe. I once saw a man with his steering wheel sticking out his pants, when I asked him what it was doing there, he replied, ‘it’s driving me nuts!’
There’s a few reasons that this topic of disability is resonating with me right now. We haven’t been abused for using a disabled space (God help the person with the balls to do so) but I know people who have. Well, they’ve had a note left on the window of their car calling them frauds, but the coward didn’t have the courage to actually say it in person. However, to them, the child must not have looked disabled enough. Bringing me back to my first point… what does a disability look like? Should someone who gets out of a car parked in disabled space immediately start walking like Keyser Söze? (Kudos if you get the reference, google it if you didn’t).
In July it was announced that people with hidden disabilities, including autism and mental health conditions will have access to Blue Badges. From 2019 those with ‘hidden disabilities’ will be able to apply for a Blue Badge. The new system isn’t going to mean they hand out Blue Badges willy nilly and as with most government applications having a doctorate in particle physics is recommended if you’re filling out the form. The extra inclusion of recognised conditions is music to the ears of most; but will it change the perception of the ignorant? I highly doubt it. The cynic in me can just see an increase of notes left on cars and more and more misunderstandings.
In my eyes, the problem is simply the poor wording and portrayal of the scheme. When it’s called a ‘disabled space’ and has a picture of a wheelchair painted on the ground, what should we expect Joe Public to expect? Three Tooth Trevor, fresh from storming out of Jeremy Kyle (because it turned out his sister was cheating on him all along, and the father of the baby, Lidaldi (named after the places of probable conception), is actually his cousin Bazza), will find it hard to understand without relevant picture clues. A long time ago (not in a galaxy far far away) there was talk of changing the term disabled toilets to ‘accessible’ toilets. Which would probably be a much better term with parking spaces.
I think until we have changed the image of a disability in general there are always going those who judge others. Isla might not need a Blue Badge forever but who could begrudge her one right now. She has survived 3 cardiac arrests, has clocked up 100s of seizures, has a global/social developmental delay, has hyper-mobility in at least 4 joints, has a defibrillator in tow and needs oxygen nearby; you can’t see any of that when you look at her. You can’t see her struggles. She might not have a wheelchair but she isn’t able to do the things most children her age do easily. She isn’t ‘dis’abled or unable, it’s just not easy. To me, it is Judgey McJudgerson, who struggles to understand this concept, that has the real ‘disability’.
The Long Cutie 