A few years ago I would have rather called myself anything but disabled. I mean it’s not the sexiest thing to be called is it? Even though I was a bonafide blue badge holder and couldn’t walk unsupported I still didn’t see myself as disabled because I didn’t want to be disabled.
Being disabled was bad.
These are the sort of things I thought about disabled people. That they didn’t have enjoyable lives, they were weak, they didn’t have real relationships, they certainly didn’t have sex or kids, or go out dancing or get drunk
I was born with Spina Bifida which is a neuro tube defect. Basically the nerves in my spine are a bit kapooey (not a medical term) apart from a big lump on my lower back you wouldn’t have known I was any different. I crawled and walked (a little later than the norm) and had no real issues till I hit my teens. We realised after I got a cut that just wouldn’t heal that I had decreased sensation in my legs and feet. Over the next ten years I was in and out of hospital. Getting various toes amputated, and bones taken out and antibiotic drips put in for my many infections. It was pretty grim. Especially as all I wanted to do was fit in and not be seen as disabled because being disabled definitely wasn’t cool and that’s all most teenage girls want to be.
Things settled down when I reached my twenties. I became a Mum which forced me to really take care of myself and not ignore infections and still go down the pub like I did when I was 16. My walking got slower but not really noticeably and I’d only occasionally fall over.
Then my mobility really declined in my 30’s. I started off needing to use a walking stick then this progressed to crutches and I hated it. I hated how visibly disabled I now looked, the stares I’d get, the intrusive questions. People always assumed I’d had an accident, they’d ask What I’d done and I’d stutter and mumble about being born like this and they’d say they were sorry and walk away and it always felt super awkward and a bit demeaning and like I’d been forced to admit my dirty little disabled secret.
It’s exhausting. Constantly trying to hide a part of yourself. Always making sure my stick wasn’t in pictures, because I thought it made me look unattractive (which is ridiculous because I’m a total babe) Exhausting having all of these negative thoughts about myself about a part of my identity.
So what was my turning point? My Rocky montage? I think it was lots of things really. Having my third son Clark was a huge one. He’s got SB like me and he is bloomin magical. Just the right amounts of cheeky and charming and so kind and ridiculously smart. As I watched him grow I realised how his disability wasn’t a negative about him. It made him who he was. His empathy, his clever brain always trying to work out a way to do something that his legs wouldn’t allow him to do. I adore the lump on his back just as much as I do the freckles across his nose.
I joined forums and began to read the lives and experiences of other disabled people. People who just like me and Clark didn’t fit into the one size fits all ‘disability is terrible’ nonsense that’s been fed to us all for years.
Then a few things seemed to happen all at once. I began to connect with more and more disabled people online. Weirdly (not weirdly at all) our lives and conditions are just as varied and different as non disabled people. For me and others I’ve spoken to what disables us more than our actual impairments were other people and often our own negative views on disability. It was peoples attitudes, the stares, the questions, lack of access in public places. That all made my life harder, that caused me more anxiety and feeling like rubbish than not being able to walk did (Have you been in a wheelchair? That’s way more fun than walking) What’s actually empowering about that is the fact that when our voices get heard changes can and are happening. Just not quick enough for my liking.
Through connecting with other disabled people I learnt about ableism (discrimination in favour of abled bodied people) it was something I’d never heard of before yet I faced pretty much every single day. When people make assumptions about disability and disabled people, when we get over praised for doing regular things (Oh wow you made a jam sandwich you clever thing) like seriously? You should see my homemade lasagne it’ll blow your mind. When I can’t go to certain places because I can’t physically get inside. It’s all ableism and it’s managed to hide itself in plain sight for a very long time.
So I began to talk about it and write about it on Instagram. At first I did so tentatively, I still felt like I shouldn’t be moaning about this stuff or calling it out. My brain told me I was being dramatic and making a fuss over nothing. But then other people began to comment and tell me they related. Told me they felt ashamed to use their mobility aid and they hated it when strangers asked them intrusive questions too. We all began to share our stories and it was so validating.
I began to feel proud of who I was. Proud to be disabled. Proud of my resilience, proud of every challenge I’d tackled and proud of every time I’d got back up when life had knocked me down. Proud to be part of an online community of amazing disabled folk.
That’s not to say it doesn’t suck sometimes, but doesn’t everyone’s life suck at some points whether you’re disabled or not. There’s about 13 million disabled people in the UK alone. Some are born disabled, some become disabled, some disabilities you can’t even see. Each an every one of us completely unique with our own stories to tell.
The reason I’m here telling mine and will be sharing more in the future is because I finally decided it was time for me to get a wheelchair. I met the lovely Darren and Lenny from Lifestyle and Mobility who came out to fit me for for my chair. I was so nervous before hand and it certainly didn’t feel like a positive thing but they put me at ease straight away. They were so warm and funny and actually got me excited about getting a wheelchair. I also talked their ears off about how passionate I am about changing the perception of disability and disabled people. How passionate I am about getting our voices heard! Basically charmed them to bits and wangled myself this writing gig.
So then, I’m Nina, Ma to four pretty amazing boys, Wife (when we eventually get round to it) to one lovely Jason. One annoying cat who rules the roost and one dog who stinks it up. I adore all things kitsch, tattoos, the work and face of Benedict Cumberbatch, Harry Potter, Instagram, writing, daffodils and pudding. I’m a counsellor, disability mentor, massive nerd and very proudly disabled.
For any work enquires please email ninamarietame@gmail.com
You can follow me over on Instagram too @nina_tame