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Disability and Inclusivity

I would like to say that this post is different to my previous ones. I hope you enjoy this little insight into who I am and my take on diversity and inclusivity in literature.

This is one of my current reads and features a very diverse cast

My Background

I have a disability. I was born with Spina Bifida which means that, for me, I have always had a weakening in my limbs below the waist. Walking has always been a challenge, but I never wanted to be in a wheelchair. For me being in a wheelchair meant I was 'disabled'. It meant giving up. I would be 'othered' by the fact that I was on wheels so I fought it. I had my feet broken and reset 5 or six times each, my left leg was lengthened by 7cm to counteract my limp and numerous other spinal and patch up surgeries along the way. I was not going to be in a wheelchair.

When I was 33 the pain started. There was no warning, no aches and pains. It was like someone held a cattle prod to my lower back and the electricity would flow down through my legs making me collapse in agony. When the cattle prod sensations subsided my legs felt like they were on fire or ice cold; sometimes both at the same time. Wearing jeans, tights, anything tight fitting, would have me in tears but a girl has to look her best and so I persisted. At the time I was a middle school teacher and my colleagues would escort me from my car to my desk picking me up when I fell over. They tried to send me home. They dragged me to the staffroom when they could see my pain killers had hit me hard and I was slurring my words. They took very good care of me and it was at this stage I began to think that a wheelchair may be the only thing to take the pressure off my spine.

After lots of heartache and mobility assistants being less that helpful, my Dad found a company who built the racing chairs for the paralympics and I bought a chair made to fit me. Instead of this being the end, I was able to go to work and be more independent than I had been in years. I could do a full day's work, go to the supermarket, meet friends and not be exhausted, cranky and in unbearable pain.

I realised that being in a wheelchair was life affirming. I could 'do' everything. My friends and colleagues didn't treat me differently. The world didn't stop. I could go shopping and not only manage a couple of shops before I had to sit and rest. I was free. I would use the chair in the daytime when I was out and about and then use my crutches for round the house and when visiting friends.

Then I became pregnant. All pre-planned and given the go ahead by the consultants. At 7 months I was more wobbly than ever on my crutches so I made the decision to use my chair permanently. I hadn't come this far to hurt my baby by taking a tumble. I knew then that making that decision would mean my muscles would deteriorate and walking would be very difficult in future. Did I care? Hell, no! I knew I was making the best decision for me and my baby.

Baby is now 3 years old and she is my world. She's beginning to notice that I'm in a wheelchair, and it doesn't bother her at all; she laughs when I stand up because that not what her Mummy does - "Sit back down, Mummy, you can't walk!" she's not wrong and so perceptive. She knows I get out of my chair to reach things while holding on to whatever is to hand. She can tell when I hurt. She knows Mummy can spin better than anyone else she knows. She also knows that Mummy wins every race.

And Now for the Books...

I know that up until this point this post hasn't had anything to do with books and reading, and perhaps people have given up and not read to this point, but the point of sharing all this is that I do not see myself as disabled. I have a disability but I can get most things done. I work (I'm now a full time secondary teacher), I drive, I'm a mother. I may have to do things differently but I do what I can. There are hundreds of thousands of people like me. People who do their best with what they are given. But, where are we in books? We want and need to be 'seen'. I read so many books but I rarely see realistic disabled characters. I am heartened by all the LGBTQ+ positivity and awareness and it is high time people become more tolerant of difference. Difference is beautiful. Different means there are more stories to be told and heard. Different means there is more to learn. But disability is still so hidden in literature - you may see the scarred villain, the bitter disabled character, the token happy inspiration porn character who never lets shit get them down. There are very few realistic characterisations of disability in literature.

There are some, but not enough. How many disabled writers can you name? How many writers of colour can you name? How many writers from the LGBTQ+ community can you name? I have a feeling the last two questions are easier to answer. There are people out there who are striving to make diversity positive and visible. I will be including more posts about diversity in future because I wan't people to know my perspective and what I look for in literature. I'm not saying that I expect all characters to have disabilities but I want my daughter to grow up in a tolerant society where difference is seen and explored not hidden and secretive. I will teach her the best I can. Difference is beautiful.

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