Stop saying I’m faking my disability

"Why would I lie about something so serious?"

Hannah 21

Hannah, 21, is in her third year at university. Her favourite book is Lewis Carroll's Alice's Adventures in Wonderland and like Alice, she says she gives herself very good advice but very seldom follows it.

If you were to look at me you’d see that I have red hair, I’m medium height, freckly, a tad too thin, and that I’m disabled. Actually, that’s a lie, you probably wouldn’t be able to tell I’m disabled and irritatingly enough, you might not even believe it.

Luckily, or unluckily, I can avoid paying extortionate prices for travel as I have a Freedom Pass. This allows disabled people and OAPs free admittance on London’s public transport. However, on my trek to the latest Reading Festival, the charming orange-vested attendant at the train station stopped me in my tracks as I flashed my pass to walk freely through the barrier. He laughed at me and said: “You’re disabled?” in a tone of voice that infuriated me to the point that I wanted to smack him in the mouth. “Well I certainly don’t have this because I’m over 60 do I?” is what I so wish my witty riposte was. Instead I lamely claimed: “Just because I don’t look disabled doesn’t mean I’m not.” To be fair, this is as true to the point as it gets.

I’m one of over 8,000 people in the UK with Cystic Fibrosis, which is a degenerative illness affecting (predominantly) the lungs and digestive system. Gradually, our lung capacity reduces due to a build up of mucus and damage from continuous chest infections, and consequently it can be harder to walk and even do day-to-day things. I’m classed by the state as ‘disabled’, yet I don’t look particularly so. In fact, I look what you would call ‘normal’ and I’m regularly subjected to prejudice and disbelief that I am actually disabled.

It absolutely maddens me when I’m not believed; it’s demeaning that (although indirectly) I’m being accused of lying about something so serious. What kind of a person do they think I am? Honestly, I have a very innocent face. But then it does feel amazing when you prove your adversary wrong, especially when they seem particularly evil. I was getting on the bus a few weeks back and swiped my Freedom Pass when the rudely spoken bus driver demanded to see the picture on my pass. I couldn’t believe he was serious, but after his second demand I cockily flipped open my pass holder and pressed it up against the glass between us. He thought he’d catch me out, well that showed you didn’t it Mister!

What’s more, on the very same bus journey I was sitting on the seats down the front – you know the ones that state that you should please offer your seat to the elderly or disabled. An old man walked towards me down the bus all the while giving me a hateful stare as if to say: “You disrespectful little girl, look at you sitting in my seat.” Well maybe I’m being paranoid but it was definitely a disgusted look. Sorry mate, these seats are for the disabled too.

But it’s not just being doubted altogether that frustrates me and other people with Cystic Fibrosis. There was a recent post on the CF Trust forum about coughing fits in public, a regular occurrence for us. When the tickle starts you off, you can’t control it and you really want to be able to stop it since you’re in a public place, but you just can’t. I can understand if people move away slightly, for all they know you might have a cold or the flu and they don’t want it. What upsets me is the stares. They look at you like you’re transmitting the plague or something and it’s humiliating. We aren’t disgusting creatures and we don’t pass on disgusting germs to you – you can’t catch a CF-related chest infection.

I just wish that people were a little more considerate; you don’t know me just as I don’t know you and as that old chestnut goes, don’t judge a book by its cover, because you don’t always know what lies underneath.

 

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Updated on 29-Sep-2015