There’s no rule book for being disabled, nobody tells you what life is going to be like when you are diagnosed with a condition or you find that life has decide to take a detour. Your thrown in at the deep end and told to swim.
For a while, you seek a solace in others going through the same thing, and when I was born in the late 80’s my parents were encouraged to mingle with other parents who had children with disabilities, it helped them cope, when at the time, nobody knew what was going it happen.
I turned out OK, with a bonus of a blue badge, I attended a special school, at the age of three and those fellow wonky friends I made as a kid, became as close as family as I headed into adolescence. That bond that formed is one that is never lost, we grew into our faulty bodies, happily navigating our way through life with the ‘different’ label hanging around our necks.
We grew up, and as always happens I lost touch with many, most have passed away now, as heartbreakingly, there disability made it impossible for them to get to the age I am now. I decided that after years of associating with disabled people, it was time to broaden my social circles and attended a mainstream college.
I was nervous about this, I can remember my first day at college walking through the doors on that dank and dreary morning taking a deep breath and wondering if I’d ever make a new group of friends, who weren’t like me – It took a while for many to speak instead of stare, and after a few days, a friend of mine introduced me to the students in the year above. They greeted me with a smile and took me down the pub. I blossomed, and 13 years on, one of those friends has become my best friend.
I felt like I grew into the person I am now in those early years at college, I could see that there was more to me than my disability, the label that had hung around my neck was always going to be there, but the writing on the label was fading I realized I wasn’t just disabled, I was a creative, people liked me, my chair didn’t even factor into that conclusion, I’ve got more inside of me than what people see on the surface, I found a voice, and it wasn’t defined my disability.
I attended a School reunion a few years ago, with my close school friends deciding to skip the reunion or dead I found that some of the disabled community started to make me feel like I’m an alien in my own minority group. Some spend their lives being afraid to live, I come along, laughing loudly, loving deeply, I drink booze, swear a bit, and refuse to wear jogging bottoms and they act like I’m the Antichrist. They didn’t quite understand what had happened to me, I’d seen the big wide world and there’s no going back
I’ve become an advocate of disability, keen to show normality, rather than the brave, inspiring superhuman stereotype. I believe that Being open and honest about living with a disability is the key to empathy and understanding, once you get a handle on that, we can start to work on equality.
As a disabled person, I often find it very difficult to find common ground with disabled people these days. While I admire some, most aren’t helping the cause for equality. I really hate it when fellow disabled people speak for me or refer to us as a royal ‘we’ and try to implement a protocol for able bodied people to adhere to when they meet us, we are not royalty.
Personally, all I ask is that you respect me as a human being, show kindness, be honest, talk to me, don’t ask my friends questions I can answer (Yes, I would like milk in my tea).
I will tell strangers what is and isn’t acceptable to do toward me and other disabled people have no right to talk about etiquette around disabled people. We are not a gang. I am not your friend just because we are disabled, just as I don’t the only thing I have in common with a man I date to be our disabilities there’s more to us than a wheelchair emblem.
Stop acting like there’s a code of conduct. Nobody sat us all down and made us write rule book on how to communicate with disabled people, people who say there is are ridiculous, and make it hard for strangers to become mates – I’d always wondered who birthed the awkwardness that co exists between able bodied and disabled people, and maybe I’m starting to think, it’s disabled people?
I’ve heard disabled people, say ridiculous things like ‘you’re not supposed to kneel down to talk to a wheelchair user’
Able bodied people: Let me tell you, if you want to kneel and talk to me, that’s fine, you want to stand up, well that’s OK too. There are bigger things to worry about than whether you sit, stand or kneel when you speak to me. It doesn’t bother me, you are more importantly talking to me, offering a hand of friendship. Get to know me and feel as empowered as I do through our friendship to help make this world better for disabled people.
To my fellow disabled people, I say ‘get a grip and for the love of god, stop being petty’ if you really don’t like what the person you are talking to is doing and if it’s making you uncomfortable. Speak up, tell them. Don’t expect them to have been fully briefed on the imaginary dos and don’ts of disability. Friendship is not as difficult as you make it seem, we are all the same.
You think there’s a problem with society when it comes to disability? You might be fanning the flames.