I am Disabled and I Still Matter

I’m used to living a very restricted life and even I’m struggling to manage. Before the pandemic hit us, I had started to venture outside more often and had managed to go in a shop. As you’ll see in my latest book, I didn’t even enter a shop for YEARS… I literally didn’t go into a shop until 2014 and even then I was laying on an ambulance stretcher with ear defenders and massive dark glasses and no one else in the shop…

So you can imagine my excitement at being able to go into a food shop for a few minutes and choose my own meal, or to go in the home department and choose something for our flat. I literally went through the cushion aisle beaming as I thought about the design of our living room.

Can you imagine dreaming of the home department in Sainsbury’s?!

I was managing to go out for a sensory class with my daughter once a week. Even though I spent hours having to lie flat afterwards because my body was so painful, I felt like I was doing something important for my daughter; I was making memories.

I enjoyed spending quality time visiting my sister and mum at their place in Faversham. We’d walk around the town (which is the most idyllic town in Kent) with me in my wheelchair, visit my Uncle’s art gallery Creek Creative and have the best homemade vegan scone ever. I couldn’t go often so when we did manage to go, it was so special.

I loved watching my sister play with a tiny Felicity and introduce her to her ‘cat cousin Fezzywig’ and having my mum fuss over making sure I had drunk enough.

I enjoyed the times when I woke up and felt well enough to meet up with my friend somewhere other than my home. I remember meeting up with one of my closest friends (who is pretty much like a second mum to me) and devouring a vegan crepe with ice cream and put the world to rights.

Basically… I enjoyed my life and my freedom of going outside once a week. In fact being able to go outside to a place made me feel alive, it made me feel excited. It made me want to come home and brainstorm ideas for books I’d like to write, pictures I’d like to paint and so much more…even though I always had to take extra medication and rest when I got home because I felt so physically unwell.

To many people, my life would probably have seemed to be a pretty simple existence. And I don’t mind people thinking that because I honestly think it would be hard for people to understand quite how much my disability has dictated my life for so many years. I don’t expect anyone to understand being so incredibly exhausted that you feel physically sick, that it hurts to move…to wake up feeling even more fatigued and unwell in the morning…

I never expected people to understand that. To an extent I think you literally have to have lived it to fully understand…

But then the pandemic hit the world and we were forced into lockdown time and time again. Suddenly everything became accessible and people started looking out for their neighbours and I even had someone I didn’t know offer to pick up my medication so I could keep safe.

A vast majority of people were kind and caring with an attitude of “we are in this together” and it made me breathe a sigh of relief.

Sadly that feeling didn’t last long. There was a clear difference firstly with the government and the public, then the government the public and the disabled community. It started with the prime minister implying that they’d have to make decisions as to who received the ICU beds if the NHS became overwhelmed. I mean that was a pretty shocking statement, can you imagine how terrifying it is when you know that you could quite possibly be one of those simply because you were disabled. My wonderful friend Lucy wrote an incredible blog post about that, which I’ve linked here.

There was a clear divide between people who thought lockdown was necessary and those who thought that it was a hoax that the government were using to control us. There were all sorts of people from journalists to celebrities and MPs who were abhorrent that we were all in lockdown measurements and that we should just “keep the vulnerable shielding whilst everyone else got on with life.”

It was as if mine and my disabled community’s lives didn’t matter quite as much, I mean we would be spoken about as “the vulnerable” or “the disabled” and it didn’t going unnoticed to me that the word “person” was often left out. 60% of deaths caused by COVID-19 have been disabled people, yet we aren’t seen, we aren’t represented. If someone young dies, it’s regarded that they “must have had an underlying health problem” as if that makes the death less shocking in some way.

This pandemic has been physically and mentally exhausting. It’s everywhere and it is terrifying. I mean the risk of me becoming seriously ill with COVID is real, yet still I’m having to fight for my rights. I’m used to having to fight for my life, but the prejudice is just knackering.

Then I watch something like the Big Questions on the BBC, I stupidly read all the comments on certain journalists and politicians who are basically saying that my life is worth less than another’s and it feels pretty damn hopeless. I have had read absolutely horrendous hate mail which a friend has received for appearing on a documentary about the disability hate crime in the UK. I read articles where again the whole consensus is that my disease is down to not being positive…and it makes me tired. So tired of the fight. So tired of not being seen.

I thought about what I could do…how could I be seen? How could I shine a light on the massive injustice? How could I show you that my life matters?

Well maybe it will take a little video of my eighteen month old daughter running into my arms and shouting excitedly “My mama!”…maybe it will be reading my books…or reading this blog.

But whatever way it is, I hope you can see that just because I’m disabled and have to use a wheelchair doesn’t mean that my life doesn’t mean anything. And even though at the minute this all feels rubbish, we will bounce back because one thing I do know about my community is we don’t go down without a fight.