I’ve heard the phrase “Disability Top Trumps” quite a lot recently and it confused me for a while. I didn’t understand how someone could compare one condition with another. I was also confused by the idea of comparing one person’s experience with someone else’s. Different people cope with the same stimulus in different ways.
That’s something that I try to avoid in my posts. I really hope that I’m successful in it, and I want people to know that this blog is about my personal experience. Having joined a few AS support groups and forums etc… I know that I’m very lucky. I’m on the right treatment and have built a number of coping mechanisms (many of them without even realising that they’re coping mechanisms).
There are a lot of people with AS who can’t work. That doesn’t make them lazy, or me any better than they are. It just means that they’re affected differently. As I’ve been talking about in my #keepinitreal posts, a lot of people with invisible illnesses will hide the challenges – especially on social media. In fact, I’d say that pretty much everyone tries to show their best side.
But that “make do and mend” or “keep calm and carry on” attitude also causes confusion. If you have walking aids, an assistance dog, or a clear physical disability – people can see that. For invisible illnesses the visual clues aren’t there. (Which is probably why they’re called invisible illnesses!)
It’s very clear to see the one-upmanship on public transport. There are signs on seats close to the exits saying that they’re reserved for the elderly and people with disabilities. The Brits are known for manners, and so we will regularly offer our seat to someone who is clearly pregnant. But if your disability isn’t obvious then it can get a bit uncomfortable, and I’m sure that quite a few people with disabilities, especially my fellow Ankylosaurs and other people with “invisible illnesses” will nod in agreement.
With AS it can be confusing, especially for people who see you through the day. Out of bed climbs a little old man, hobbling to the bathroom and wardrobe. Grunts and other sound effects accompany getting dressed. Weird contortions assist in taking tablets and the 30 second walk to the bus stop takes four times longer than it should.
But as you get through the day the stiffness relaxes and you begin to move more freely. I’ve heard it described as looking like a man who’s lost twenty years. So, in the morning, I sit at the front of the bus. Normally it’s fine, I leave the house at 08:00, well before the elderly pass travellers are allowed to use their free travel. In the evening as I return home and am more mobile, I move further down the bus.
Sometimes however there’s an older person or two. Or the lady who carries a walking stick but doesn’t use it consistently. As I’ve mentioned before, I’m terribly vain and purposefully don’t use a stick because of the improvement during the day. I use brollies as they come in a huge range (to match my outfits) and don’t look as conspicuous in the afternoon tucked under my arm. So I’m absolutely aware that she needs a walking aid, but maybe hers is to assist her with distances. I’m not sure, and I don’t want to judge or diagnose her, I’m not qualified.
There’s been a number of times where these people have stood over me or asked me to move because “these seats are for the elderly and disabled”. In fact, it happened today. How can you respond to that without the word “actually…”? I just apologised and mumbled something about having a disability myself.
And this is the key to disability. We’re coming up to the Paralympics – where people with disabilities compete against each other and their own bodies to perform amazing feats of athleticism. They’re inspirational, but sometimes what one person can do another can’t.
It’s the same with AS. I know some awe inspiring Ankylosaurs who run marathons, triathlons and who do weights/bodybuilding. I know that I can’t do that, but then again I’m not housebound or unable to work.
That’s not to say that the athletes have it easier, or that their AS isn’t as bad as mine. Nor does it mean that those people who aren’t able to work a full time job are worse. It’s just different experiences.
So, if you see someone on the bus in the front seats, or if you meet someone with AS, don’t assume that they’re faking to get off quicker, or tell them that you know an amazingly attractive, intelligent and witty guy (what!? It’s my blog!) who’s able to get out of the house and so should they. Treat everyone as an individual. Because that’s what they are!