This week is Invisible Disability Awareness Week. Growing up I never actually saw my conditions as being ‘disabilities’. I always knew having epilepsy made me different but as far as I was aware it didn’t affect my abilities in any way. That was until GCSEs.
The Realisation
Without intending to be cocky, I was always bright. In class, I did well and I flew through the majority of my coursework like a tiger defying the laws of gravity. Yet when it came to exams I struggled. I never had the energy or focus to properly revise. And by the time I got to the exam hall, I’d already forgotten it all.
Although I came out with an acceptable collection of grades, the results were nowhere near as good as I’d expected. I felt disheartened. Like I wasn’t good enough, I wasn’t meeting my potential and there wasn’t anything else I could have done. And as I moved forward into my first year of A-Levels, in the autumn of 2011, things just got tougher. By the end of the first term, I was studying two instead of four subjects and barely coping with that.
So I decided to visit the deputy-head for some reassurance and guidance. In my first few years at school, he had been one of my main supports. We shared a passion for Holby City and would excitedly discuss it every Wednesday, but on that day our encounter was far different. I don’t remember what I said to him or even what he replied, all I heard was one word repeated continuously: ‘DISABLED’. No-one had ever called me that before, it wasn’t a word I’d ever use to describe myself. I left there feeling deflated, as though someone had just accused me of something terrible.
A week or so later I built up the courage to tell him how he’d made me feel and he apologised. But that discussion got me thinking.
The Acceptance
I don’t remember exactly when that conversation took place but in January of 2012, I had my first experience of Status Epilepticus. I nearly died and the experience sent me into a state shock leading to uncontrollable Non-Epileptic Attacks (NEAD). And then just a few months later, the headteacher unfairly forced me to leave school.
All of this combined lead to me accepting that my epilepsy was indeed a disability. I’d received my autism diagnosis less than a year before and still hadn’t fully accepted it. But as I began understanding my second condition, I realised that ASD affected me almost as much as my epilepsy and it too was a disability.
I was always on the SEN list in school but never received additional support. And it’s fair to say that hospitals have always felt like my safe place. I’d never doubted I was different or unwell but I didn’t see epilepsy or autism as a disability until it directly affected my life. I had to start looking at alternative forms of education, my dad applied for me to get Disability Living Allowance and it all started making sense. These conditions had been holding me back my whole life. They were making me less able.
However, as anyone who follows this blog will know, accepting that I had a disability didn’t make life any easier. Mainly because others still couldn’t see it, literally.
The Aftermath
In the years that followed, I completed my BTEC at college, got myself an undergraduate degree and everything seemed fine. I was getting support at uni and my friends were all very accepting and understanding of my situation. And then the government had a welfare reform, or should I say welfare destruction?
After my DLA was cut at the beginning of 2017, I began a 19 month long battle for Personal Independence Payment (PIP). I documented my full journey on my old site, mainly in poetic form, so if you want to read more click here. I spent over a year trying to prove that I was disabled enough to receive support. And if I hadn’t had a massive seizure in Tottenham Court Road tube station, I’d probably still be fighting that battle today.
In 2018, over 60% of people with epilepsy and 30% of those with learning difficulties were denied PIP. I really am one of the lucky few. Due to the benefits I recive, I now qualify for a blue badge and I don’t feel ashamed using it. Just because my disability is invisible it doesn’t make it less disabling.
In Sheldon Cooper like form, this put Esther McVey on my mortal enemies list. But benefit injustice isn’t the only evidence that the world still only accepts what it sees. I’ve had odd and scary arguments with mothers who think they’re more entitled to use disabled loos than me. Been denied a seat on the tube despite my blue card. And have very little faith in employment.
This is why I write, why I document all of my struggles. Because even if people can’t see them, at least they can read them. With everything going on in the world right now, it is more important than ever to keep on spreading awareness about invisible disabilities.
As I discussed in one of my previous posts, I’ve felt neglected during this pandemic. I’ve felt forgotten or even invisible. But I’ve also felt as though there is a gap in all the protests currently taking place for social justice. The whole world is standing up against racism but not ableism. A lot of my friends whom I’ve discussed this with weren’t even aware there was such a thing. More needs to be done, but the first step is always awareness.
So to help me change the way the world sees invisible disabilities. Subscribe to my blog and share my posts. Education is everything and we can only educate together. Thanks for all your support.