Since I’ve decided to tell it like it is about my life with a disability, I thought I might write a post spelling out my perspective of what disability actually is.
This is not a general post on all disabilities. I’m aware that there are visible and invisible ones.
I can only speak from my own experience as a wheelchair-user.
Over the weekend, the fam and I went to a bookshop.
There was a steep, but useable ramp to get through the door with my wheelchair. With the help of an accommodating bookseller who perhaps realised I was there to spend some money, Neil moved furniture so I could get through to the books, and then took photos of the titles I couldn’t see from where I sat.
Not ideal, but it worked. I bought books.
When I was a kid, and either driving around in my purple wheelchair or walking around on my crutches, people would ask my parents what was wrong with me. Strangers said they would pray for me, they felt bad about the wheels. I had such a pretty face.
‘Nothing is wrong with her,’ said my Dad.
‘I fell off the back of a motorcycle,’ I answered for myself. I was 5, and 8 and 12, and my sarcasm was there even then.
My point is, unless you are one of my parents, or the very groovy orthopedist that I had when I was a kid, or you love me or came out of my body as an adult, my medical diagnosis is none of your damn business.
Since we are all friends here, I have CP. That is my medical condition. I am OK with it. It is a giant part of who I am, and I wouldn’t trade it. I do not need to overcome it or triumph over it, I prefer to work with it. And a positive attitude won’t change it.
For me, CP means that I use a wheelchair. All of my wheelchairs have been pretty badass vehicles that take a lot of shit from me.
My wheels and I have literally travelled the world on busses, trains, giant planes and a tiny Fiat.
My chair has taken me to two Universities, lots of pubs, and down the aisle.
I love my wheels. My wheels are not the problem. My CP is not the problem. My issues are inaccessible buildings, stupid policies, and other people’s willful ignorance.
I am disabled by my environment, not my CP. My way of thinking is not new and can be distilled in the social model of disability.
My career, when I had one, was spent advocating for accessible travel and inclusive education, for all disabled people.
When I write about my life as a disabled person I am not looking for kudos or sympathy.
Empathy sometimes, sympathy never.
I’m writing to share my experiences on wheels, my workarounds and access hacks, and yes, to highlight that the world needs to be a more accessible place.
Don’t read me and tell me I am superhuman for living my regular life. Don’t tell me that my life makes you examine what you take for granted.
Don’t tell me I’m not disabled.
Instead, don’t park in accessible parking (unless you need it), don’t use accessible toilets (unless you need them), don’t open the door but then stand in the way of someone’s wheels to get through it.
Talk to the person, not above their heads.
Don’t pray for me to walk, help make room for my wheels. Even if that’s something as simple as moving the furniture.
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Also published on Medium.