Lucy is an award-winning charity campaigner, blogger, and dog trainer. For our End the Awkward campaign, she describes the day she was told she could walk again… by a physiotherapist who failed to spot her wheelchair in the corner of a room.
I have Ehlers-Danlos syndrome. Instead of my collagen being like glue it’s like over-chewed chewing gum, or at worst wet tissue paper. It stretches, gets thinner and sometimes tears, but never resumes its normal shape.
As a result, my gut has failed, my bladder has failed and I can’t eat or drink anything at all. I’m attached to a pump 24 hours a day which pumps all my nutrition, fluid and medicines straight into a line in my heart.
In most cases, people with Ehlers-Danlos can lead fairly normal lives. I have a really severe form which has led to organ failure and life-limiting complications. Nobody knows why. It’s just how it is.
My life philosophy
I had health problems growing up but I became disabled and very poorly when I was 14. In months, I went from being healthy to completely wheelchair bound, and then a year later bed bound.
I’m 21 now and my health is up and down. Sometimes I can get out and about, at other times I’m stuck in bed for up to a year at a time.
My philosophy is simple. You have to make the most of what you’ve got and not dwell on the things you haven’t, especially when your time is limited like mine is. To get by you also have to laugh, and find humour in even the most difficult situations.
Seriously, I can walk now?
Last year, I was in hospital recovering from a major hip operation. A physiotherapist breezed over and told me I’ll be walking again in no time. Hallelujah – a miracle!
I explained, patiently, that I haven’t walked for six years but she wasn’t listening. Apparently, I was going to make a full recovery. Five minutes went by before the penny dropped and she spotted my wheelchair. I watched her face turn as red as a beetroot. She must have felt seriously awkward, because that was the last time I saw her.
Molly, my assistance dog
Molly is my assistance dog in training. She picks up things I have dropped, puts clothes in the washing machine, takes my jacket, trousers, shoes and socks off, gets my mobile, fetches my medicine pouch and lets people know if I need help or alerts them if I’m poorly.
When I’m out with Molly, people will say to me: ‘Is she pulling you along then?’ or ‘You don’t need to worry if you break down do you?’ I try to smile, but when it’s most people I encounter saying it, it gets old.
I use an electric wheelchair. For some reason, people love to lean on, or next to, my joystick, so I am always sure to switch my chair off unless they fancy going for an unexpected ride!
Molly has driven me a few times as she likes to lay her head next to the joystick. I have to be careful when people hug me too. When I do leave my wheelchair switched on, the look of horror on people’s faces is priceless – you’d think they had committed a crime.
Why is disability so awkward?
When you’re in a wheelchair, most people don’t talk to you or even look at you – except the ones who stare. But when I got Molly, people started talking to me. She became the perfect icebreaker! Now, rather than being “that girl in the wheelchair” I’m the girl with the amazing dog.
Awkwardness comes from unfamiliarity. People are too scared to talk to me for fear of saying the wrong thing. So some cover their nerves with silly jokes and others just totally ignore me. When people are scared of saying the wrong thing to disabled people, they end up excluding us.
How to end the awkward
I wish people would treat disabled people like they would anyone else they meet. Our bodies may mobilise and/or communicate in a different way, but we’re still human beings with wants, needs, hopes, dreams, desires, hobbies, passions, outlooks and attitudes.
We’re as unique as the rest of you, and we all want to live the best life we can. I wish people knew how to talk to us, which of course, they literally do, but when they see a disabled person everything goes out the window.
I can guarantee that you can make a disabled person feel 100 per cent better if you walked up and talked to them about ‘normal’ things, rather than entering straight into deep, intrusive and personal questions.
I’m quite open. I don’t mind telling people about my disabilities. But it would be nice if one person just started a conversation with me for the sake of it. I’d love that.
Lucy is raising money for a custom-made electric wheelchair to help her regain some independence.
Have you got an awkward tale to tell? Share your story with us.