Last week I sat down with Vix Meldrew for her awesome new podcast and discussed sex and disability, relationships, women that inspire me and how we can all do better at raising the voices of marginalised groups. Go listen to my episode here. I felt like I’d known Vix forever and I am pretty much in love with her now, so yeh, pop over and let me know what you think please mates.
As soon as she asked me about a woman I know that inspired me, I didn’t have to think, I knew who I was going to talk about right away. And even before my chat with Vix, I wanted to write about this but I’ve never really felt like I had enough strength to do so.
A lot of people ask me why I view disability the way I do, why I take everything in my stride and why I talk about it as much as I do…and the answer is simple, it’s because of my Nan.
So, a little background if you’re new round these parts; I lived with my younger brother, mum and grandparents from the age of five. My Nan was disabled all my life and in the latter part of hers, she lived in the living room. She had an array of conditions that I won’t bother listing because quite frankly I can’t remember them all but she certainly dealt with chronic pain and much more. My Mum was her main carer but my brother and I helped out when we could; mostly my bro.
She had an infectious personality, she would be laughing about something you had no clue about but it would draw you in and you’d end up in fits of giggles too. She gave the best advice, she took no shit and she was one of my best friends. My mates would come over after school and sit on the end of her bed to give her all the gossip and I think they enjoyed her company more than mine half of the time.
She was also really open and honest; she’d tell us when she was hurting or suffering but wasn’t the type of person to bang on about it or it be the only thing she talked about. She was also always more concerned with everyone else. My brother and I were lucky to grow up surrounded by her, my mum and grandad. We never missed out on anything and were thoroughly loved.
I’m also a chatterbox like she was. The woman was always on the bloody phone. The amount of little fights we had over the phone was ridiculous; she’d want to talk to her sister and I’d want to use the internet, and back in the dial-up days, this was a bit of a nightmare. If she wasn’t talking, she was having a brew. That’s one thing I didn’t get from her as I’m not a hot drink fan, but she loved a cuppa.
She also had this hilariously posh telephone voice that would crack me up, and sang You’ll Never Walk Alone in an old school tone that you’d think she was performing for royalty. She loved to sing and I can’t listen to certain songs without thinking of her and ending up in tears. She was also incredibly sassy and fought for what she believed in…sound like anyone we know?
Anyway, I’m going off on one; back to disability shiz.
Growing up not knowing what was wrong with me I spent many a night with my Nan rubbing my legs because they were hurting. We tried various medications and she’d experiment with different essential oils and heat therapies to help with my pain. Her and my Mum would have endless sleepless nights because I’d be crying desperate for some relief. It was tough, and looking back she was there for me every step of the way.
I ended up sharing a room with my Nan because we were both up all hours, both dealing with some kind of agony, both frustrated. But she was only ever focused on me, only ever wanted me to get some relief and feel better. And even then, in the midst of my tears she’d always manage to make me smile or laugh. She’d tell me that there wasn’t a decent working body part between us and we should ask for a refund.
I realise now that laughter was her coping mechanism, and I know it’s mine. I always try to make light of difficult situations and if I can laugh, I will. And that’s what she did. Her other way of dealing with things was distraction; the house was never empty and she always had us to help her through things. She’d have her friends visit or call them to cheer her up. And that’s exactly what I do too. My favourite distraction method is calling my bestie or my nephew, it doesn’t take away my pain but it makes me forget about it for a while.
For me (and her), it’s really important that I don’t dwell on my health, I’m not going to be miraculously cured and there’s no point beating myself up about it. She always used to say to me, ‘you’ve got one life, Tattyhead, don’t waste it on what you could have been.’ And I try to make that my mantra. I’m disabled, so what? I’m also a writer, a photographer, an auntie, a girlfriend, a friend. She taught me that it’s okay to be disabled, that it’s nothing to be ashamed of and it’s fine to be defined by it.
My Nan died eight years ago, six months after my Grandad, and I’ll never get over it. They were more than my grandparents; I didn’t see them every few weeks or on special occasions, I lived with them from a young age and I never thought they wouldn’t be here. I just hope I’m making them both proud, especially my Nan with all the disability advocacy. I don’t think I’d have been as vocal as I am about it without her.
I have an awful lot to thank her for. She inspired me in ways I’m still only realising now eight years after her death. She shaped me into who I am today. She influenced my outlook on disability massively, and I’m incredibly grateful for that.
From an abled outsiders perspective, there might not be much good to be taken from living with a disability, but in her I saw that it wasn’t a ‘death sentence’ so many people claim it to be, and yeh, I struggle and things are shit but I use wheels instead of legs so who is the real winner here!?