Nina Tame

When we got Clarks diagnosis. When the doctor suggested we end the pregnancy, it was pretty heavy shit. So when he was born, I wanted to sing about him from the rooftops. “LOOK ITS OK HES WONDERFUL. He’s not the sorrowful version of disabled, he’s differently-abled!” I shared every milestone, appointment, surgery and all the normal stuff in between. Every like and lovely comment about him felt so good and validating.

I didn’t know about ableism, even though my ‘Disabled = bad. Differently-Abled = Good’ mindset was ableist as fuck. We were so safe in our cosy bubble of social media likes that when he got older and we left that safety it was surprising to meet ableism (charming fellow likes to ask a lot of fucking questions)

Endless questions from class mates and strangers. What have you done? What happened to you? Its presumed sympathy when it’s not needed. Oh the pity smiles. The stares and sniggers. People only ever seeing the medical side of you. Only wanting to know about the medical side. What about the social side? Don’t you wanna know how crap it feels to be viewed like we are? Don’t you wanna know about accessibility and how shit it is and how much better we could make it? Don’t you wanna know how it feels to constantly be asked intrusive questions every day? No you just wanna know “What’s wrong with you?” And that’s exhausting.

I saw how this all affected him. How tired he got with constantly having to explain his disability. There’s a presumption that when someone asks we must tell them. we must be polite. That’s how I’d always felt, no one ever told me that actually it’s ok not to answer, that no one is entitled to know my personal medical details. So it was so important to us that he really understood he had a choice whether to share or not.

I wanted him to know the joy of trusting someone enough to give them his truth and them cherishing it like it was their own. Or the option to be a delicious mystery to someone if that’s what he wanted.

Disabled lives involve a lot of intrusion. It’s doctors and medical procedures and poking and prodding. You’re a body. You’re a set of medical diagnosis. You’re a bunch of tests. You’re a big pile of notes at the hospital and doctors who sometimes don’t even know your name. I wanted him to know that even though he had to answer those questions, he didn’t ever have to do that outside of a medical setting.

How can I tell him all of that if I’m still sharing his medical journey on here though?

“Babe you don’t have to answer that strangers question but he can pop on his phone right now and find out everything about you from my instagram anyway” Thats what hit me this week, sure I’d never shared anything I considered embarrassing but I was still sharing personal medical stuff justifying that I always ask his consent first. But how can a kid possibly know what it really means to have your info shared on the internet. They can’t.

He doesn’t need to be the poster kid for disability. It’s not his job to raise awareness or normalise it. How can I force that role on him when he doesn’t even truly know how he feels about it yet? Sometimes being disabled is shit and sometimes it’s brilliant and we want to always give him the safety and comfort to know he can explore these ever changing feelings in his own time.

Putting every single detail of his medical journey on here isn’t gonna normalise it or wipe out ableism. I could reason that surely seeing his journey comforts other parents of disabled kids but that’s not his bloody job either is it? Lose your privacy, your right to body autonomy but least you’re helping that person feel better about having a kid like you. That’s really grim.

I love the parents of disabled kids who post pics of their family and never explain why their kid is in a wheelchair or wears a leg brace. Just here’s all my lovely kids. What that says to me is we love and accept our disabled child but their diagnosis and medical condition are none of your bloody business. That’s such an important boundary to have in place for your disabled kid and I’m so grateful to have finally had my eyes opened to really understand that.

I’m not sure I can find the right words to explain how utterly freeing it is to call myself disabled.

I grew up wanting to be like everyone else (doesn’t every teenager?) So every time I got a foot ulcer and I was on crutches it was like my dirty little secret was revealed to the whole world (or my whole secondary school which for a 13 year old is much much worse)

I went to great lengths to fit in. First I tried the ol make em laugh trick. My version of this was to take my shoe off and repeatedly kick the wall as hard as I could. Can’t feel my legs so it didn’t even hurt and everyone thought it was brilliant. Until I got hospitalised for two weeks with a blood infection due to massively breaking my foot (obviously) and not even knowing.

Still I persisted, my first toe got amputated when I was 16 so naturally I was straight down the pub as soon as I got home.

Broke my foot again when I was 21. It wasn’t so bad, I ignored the resting part, I managed to walk for miles on the cast with no issues (what with not being able to feel it.) Cast on a broken foot still made me stand out though so I figured it doesn’t hurt, who needs to set broken bones anyway? So I made my housemate Spash help me into the bath and shower it whilst I cut it off with a pair of nail scissors. Then I went dancing. Ah to be 21 again with absolutely no regard of the consequences of really bad decisions.

I’d leave ulcers undressed and unrested just so I could keep going. Keep dancing. Keep fitting in and not being the disabled girl. One ulcer got so bad that I noticed a white thing inside it, gave it a little poke and it fell out. It was bone. It was a piece of my bone. I’d danced and walked so much on this ulcer that it had got deeper and deeper until I hit bone.

Spash remembers us going to a Doctors appointment and him putting his scalpel into the ulcer and he was able to touch my tendon and move my foot. I was a human puppet. Such fun!

I’d ignore infections and pain and swellings till inevitably I’d get hospitalised which always felt like the end of the world. That feeling of missing out. The feeling of being different. Feeling so alone.

I’m not disabled. That’s for other people. People who don’t go out dancing or have boyfriends or get drunk. I’m not disabled. I’m not disabled. I’m missing nearly all my toes. My feet are so fucked up I can’t even wear normal shoes anymore. I’m in and out of hospital but I’m not disabled. I’m not disabled.

Fast forward a billion years to having to use a walking stick. I’m not disabled. Ah I’m differently abled! That’s the one. Still not like the actual disabled people. Nope not me. Differently abled! It’s like a much better version of disabled. Differently abled people have social lives and sex and jobs and get high. Differently abled. That’s it. Not disabled though. Nope not me.

It kind of slapped me round the head when Cary was born. Not being able to walk unsupported. Not being able to stand up and rock my baby. Having to get one of the boys to bring him down the stairs for me. It’s ok though I just stayed in and didn’t see anyone except a handful of family and close friends.

Then Clark only went and started bloody school. Which frankly was a ridick idea. Suddenly I’m out in the world on the school run twice a day and it was clear I was very much disabled which when you’ve spent 38 years screaming in terror at the word was slightly anxiety inducing.

Hugely anxiety inducing actually. Panic attacks in the car the whole works.

I’m not even sure what changed? Actually yes I am. I stopped being such an ableist dickhead. This thing, this word, this identity. I didn’t want it to belong to me. I spent 38 trying to get rid of it like a persistent boggie that you just can’t shake off your finger.

My view of disability has caused me so much pain. My view of disability has caused me more emotional angst and depression and anxiety than my actual physical disability ever has.

What if my view of disability was wrong though? What even is the right view of disability? Who gets to decide if it’s a positive or negative thing?

Ooooh I do! I do! It me! I get to decide what it means to me. So I gave it a little try on to see how it felt. Turns out it contained all of my vulnerability.

Vulnerability is my let’s keep it hidden emotion. Vulnerability is gross. I’d shoved Vulnerability along with Disabled into some little dark room in my head not realising they absolutely did not belong there.

Once I let vulnerability out my depressive and anxious thoughts realised their gig was finally up and slumped off to into the little room and shut the door. Shame joined them too, didn’t even realise they were around that much in the first place but god I feel lighter since they fucked off.

My vulnerability and disabledness encourage me to speak my truth. It was, it IS still terrifying sometimes. Anxiety comes hurtling out of his room (like a toddler who you think is asleep but has actually found and eaten half an Easter egg and is buzzing round you like a puppy on speed) every time I go to press post. Vulnerability is weirdly soothing for me though, it’s the whispering in my ear that tells me it’s ok and it is.

I’m in a place now that I’ve feared I’d end up being all my life. It turns out It’s where I’m sposed to be though. It’s my truth.

It’s my home.

#WhenICallMyselfDisabled