My Disability Story [aka why disability representation matters] - Part One

As I was working on a future project I was trying to put into words why disability representation was so important. I realised that my life, my story, my disability story, illustrated the point. You may have heard me mention that I didn’t recognise myself as disabled until my early twenties. The fact is that I was born disabled. How did I go twenty years knowing I was disabled? Well that, dear readers is what I’m about to share with you.

The short answer is bad medical professionals and a lack of disability representation and education in society.

Now for the long answer…

As this is going to end up quite a long read I’m divided it into parts. Welcome to part covering my early childhood up to the end of primary school (11 years old).

The other parts of my disability story are:

Let’s start at the beginning

I was born in the mid-1980s, and I was twenty days early. A premature baby is born three weeks (21 days) early; I missed that official time scale by one day. Studies have shown that often even premature babies born close to term (referred to as “late preterm”) grow up to develop chronic illnesses in their adulthood. I found this out when I was searching for answers several years ago when I was diagnosed with ME/CFS. I had the same genetic makeup as my cousins and yet only I seemed to be collecting chronic health conditions like other people collect fridge magnets. Why me? What was different about ME? That’s when I found out that I was so close to the premature cut-off and the more I read about premature babies the more it mirrored my own childhood.

When I was born I was given a clean bill of health despite my birth being a bit of a struggle and being born with bent feet. Yep, apparently, my feet bending inwards were of no concern, a doctor told my parents. She’ll be fine, he told them.

Narrator: she was not fine.

Childhood

I don’t know when I first started being as a child. What I do know is a bucket in my room and the car known as “the sick bucket” quickly became my norm. I suffered from appalling travel sickness on any journey longer than 20 minutes. I caught everything and anything, including tonsillitis which I had constantly. As was the normal operating procedure in the 1990s I had my tonsils removed when I was 7, so far my only (*touch wood*) surgery to date. Removing my tonsils didn’t actually help my situation; I still got ill, I just got throat infections instead! A study in 2018 found that removing tonsils could lead to an increase in “the rate of upper respiratory infections and asthma they experience when they become adults” which I can attest to.

No one ever explained why I kept getting sick. I was just “a sicky kid”. There was never any mention of immune systems or anything like that instead doctors focused on my respiratory system because that was where the problem was, right? Up until I was 10 the family GP was convinced I was suffering from “catarrh” which is “build-up of mucus in an airway or cavity of the body”. I had to drink this ghastly medicine to relieve it and it was doing absolutely nothing. Thankfully he finally retired and it took only one appointment with the new young female (!) doctor taking over to diagnose me with asthma. That was my first diagnosis, and I honestly have no idea how long I had been suffering from asthma before she came along – or how long I’d have gone on if the old GP has not retired.

My disability story - Me as a child wearing straight toed shoes. A young girl of approximately 5 to 7 years of age standing in a garden in front of a slide. She is wearing a teal collared shirt and teal pleated skirt. On her feet are a pair of white ankle socks and straight-toed shoes.
Me as a child wearing straight-toed shoes.

Remember those bent feet that would never ever be a problem? Every parent has that one thing that is awkward to do with their child for whatever reason. For my parents it was shoe shopping and it wasn’t because I was misbehaved, oh no, it was because of my feet. You see, I couldn’t walk in round toed shoes without tripping over my own feet. I don’t know at what age I started doing it but I have very vivid memories of sitting in shoe shops for HOURS getting my feet measured over and over again by shop assistants, who most of the time were NOT nice about it. On top of not being able to wear the most popular design for girls at the time my feet were extremely narrow, which made them a really rare size.

Shoe shopping became stressful for my parents and traumatic for me. The problem was that because my feet bent inwards I wasn’t walking straight, I was walking into myself (see the diagram below). The rounder the toe of the shoes, the more inclined they made me do it. I needed straight toed shoes to help my feet point in the natural direction. I don’t know if I ever grew out of it or as I got older I progressed into shoes that were naturally more straight toed rather than round. I generally still avoid round-toed shoes anyway.

My disability story: My feet bend inwards which causes me trouble walking. A diagram showing two sets of footprints. On the left it reads "Normal person walking" and below are a set of footprints walking straight. On the right it says "Me walking" and shows a set of footprints where the feet bend inwards towards each other.

Those pesky feet would show themselves to be a bigger problem than just being awkward for shoe shopping when I stepped on a pebble and fractured my ankle.

Yes, you heard me. I stepped on a pebble. I was 11 in my final year of primary school, my days filled with working on our end of school play and thinking about heading off to secondary/high school. It was a Friday evening, which I only remember because I was a Guides and we were heading out for the night which was unusual. We didn’t often leave the church hall where we met. We were going to the local park, a park I knew well because I’d grown up going to it. As I walked out of the church gates and along the path chatting to my friends I stepped on a pebble.

I think I stopped for a moment because something went crunch. I slid over it, almost falling but straightened myself. It was one of those moments where you go “oww, what the hell?” and then just continue because it was a momentary thing. Over and done.

It wasn’t over and done. I didn’t feel anything while at the park, however, when I got home my ankle had swollen up like a balloon. This would be the first of many ER visits for me. X-Rayed, bandaged and sent home with it’s just a sprain, we thought it was all done and dusted. That night I was in terrible pain because the nurse forgot to tell us that you DON’T WEAR a tubular grip bandage at night. That’s a mistake I will never make again.

Life carried on as normal until the next week and I was back at school. I was called to the office; my mum had come to collect me. The hospital had called because a supervisor had checked my X-ray (standard procedure, they assured her) and found that my sprain was actually a hairline fracture. As it had been so long since the accident and I’d been walking around on a fracture (doing who knows what damage to it) they wanted to put it in plaster.

And that is how I managed to finish primary school in a plaster cast, which wasn’t a huge deal except that I was one of the behind the scenes tech on the play and had to literally climb (read: clamber and crawl) behind the scenes so I could hand out props during the scenes. I didn’t know it then but it would be my first lesson in adapting as a disabled person.

My Disability Story: Part One - Early Childhood - When trying to explain why disability representation is so important I realised I needed to tell my story, my disability story, to show why. This is part one.

Over to you

Thank you for reading part one of My Disability Story! As I’m sure you understand this is a deeply series. I’m not going to turn off because I am sharing this for a reason, however, please remember that I don’t have to share any of this and any passive agressiveness, nastiness or “well actually”‘s won’t be tolerated. You’re guests here so please act like it 😉 Genuine questions are welcome.

Join me for Part Two – Secondary/High School!

Psst! Have you head about GeekDis?


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Image Credits: Footsteps vector is from Vecteezy.

3 Comments


  1. Thanks for sharing! Disability representation is important because I think everyone thinks they are always “born” with a disability, not that people can come disabled over their lifetime. I think of the elderly population who can’t move like they used to or maybe people who are diagnosed later in life and need a wheelchair. I can’t understand why people aren’t emphathetic enough to allow for buildings to allow all people.

    1. Author

      Thank you for reading and taking the time to comment <3

      I think for a lot of people disability and even illness is something that they don't have a huge amount of experience with. I didn't just grow up being sick myself, my mum has a chronic illness too so it was always something I was aware of. I also have a cousin who has learning disabilities and when I was a Girl Guide we had two members who were disabled too.

      But thinking back, they all had very physical and very apparent disabilities. Where as someone like me who has what are known as "invisible" illnesses/disabilities there was no representation or awareness, and there still isn't much now 20 years on. That is why I feel it's important to talk about it. It can hopefully lead to people beginning to talk to us (disabled people), remember we are actual people and they'll feel more inclined to be empathtic about building access and wearing masks to keep immune compromised people safe etc. etc.

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