Easter approaching is these days a time of renewal and rethinking for me. Perhaps it would always have been anyway, I’m getting older, ruminating is one of the things age brings. But three years ago as Easter approached I began the decline that would bring me to the lowest moment physically I’ve ever been in my long journey with Multiple Sclerosis. I ignored all the signs and signals, I looked away as the car crash approached. Crash I did. But I had my wonderful MS nurse from Ninewells Hospital on my side and she got me through it. There were some scary moments. And some drug induced very nice ones too. But things haven’t been the same since.
Every day I ask myself – is this a good way to spend your life? Every day I look for the things that make the struggles worthwhile. Every day I don’t find them I worry. Every day I do I rejoice. But most of all, every day I work really really hard to get up and out and in the world. To work. Love. Laugh. Enjoy. It always feels somehow trite and cheap to say that what doesn’t kill you makes you stronger. And maybe it is those things. But it’s also true.
Growing up queer in small town 70s Scotland. Being isolated and excluded from ‘normal society’. Watching beautiful men all around you suffer and die in isolation as ‘normal society’ decided they couldn’t even have their partners in the room with them while it happened. Raging at the stupidity of a world that decided it was ok to tell you that your love was not equal, that your children were not your real children, that your family was not a real family. Watching night after night as the media and society repeatedly told you you are not equal. You are not one of us.
Then in 1994 I’m sitting in a hospital room and being told I have a progressive disease with no cure, a disease that might put you in a wheelchair, or render your helpless. Or might not. That might come and go, or come and come and come. That might bring pain and struggle that might be eased with drugs. Or might not. Drugs that might cause side effects worse than the thing they were meant to treat. Or might not. MS – the disease that makes the medical profession go *shrug*…
But just because it makes you stronger doesn’t mean it’s not hard. I still rage at the years I had to go through fighting to be seen as equal and I still struggle every day to cope with the effects of MS.
I am from a very long line of very tough women. The older I get the more I realise how much those largely Free Kirk Hebridean genes have shaped me. I am a Stoic whether I want to be or not. That has its good and its bad sides but as far as MS is concerned, its mostly good. It gets me up every day, it makes me fight through everything this stupid disease has thrown at me. But it also means like many disabled people I struggle to ask for help. I don’t want others to see me as weak or vulnerable or needy or ‘less’. And so as far as I possibly can, I don’t. Just like I can pass for straight, I can pass for ‘normal’… “The crutch? Oh just an old war wound you know!” (not far from the truth, I was I a war zone when it first flared up).
We seem to live in a time when the non-disabled have become hardened to the hardness of disability. Where the idea of levelling the playing field has become distorted into ‘spoiling’ us. Where somehow we are ‘getting away with it’ if we are helped to survive our days in a fashion a little closer to those without disability. Our hard won concessions are being chipped away at as if equality and inclusion are optional extras to be given or taken away at the whim of the non-disabled. It’s as if society cannot imagine a role for us other than ‘needy poor souls’ or ‘whining scroungers’.
I don’t want your hand. I don’t want your help. I don’t want your consideration. I don’t want your concessions. But I need them. We need them. We need you to care if we can get into that place safely and with dignity. We need you to care if we can read that important information. We need you to care if we can take part with everyone else. We need you to care if we can hear your announcements. We need you to help us make the most of what we have, be able to be the best that we can be. We need you to help us be able to be part of the world. To work, and get around, and be visible. To be part of your life.
We need you to do this because it is right. We need you to do this because it is just. We need you to do this because it is smart.
But you need to do this because one day it might be you.