I hate being disabled
Having lived with my disability for more than half my life now, at the ripe old age of 33 I’ve somewhat come to terms with my disability. I know my limitations. I know my abilities. I know what I need to do to cope and I know what to do when I feel like I’m not coping. I see the GOOD in my disability – I see how it’s made me a more empathetic person. I see that it’s given me a certain insight that I would never have had before. I see how it’s made me more creative in my approach to life. I see how it’s made me more interesting as a person.
Yet today I do not feel like this. Today I hate being a disabled person. Today I feel terrible.
For a quite a few years now I have been working on building my career and my business in television and it is a job that I do for the love and passion of it. The way I work means I don’t make much money out of it, but I am ok with that because the programmes I make change people’s perceptions of issues like disability and homelessness and ethnic minorities and all that stuff that MATTERS. But I want to build my career further and I have had my eye on a high-profile training scheme to help me to do just for a couple of years now. Last year I sucked up my anxieties and applied and, despite a rigorous interview process, somehow managed to get on and the last few days we began the training.
The training is amazing. The training is intense. We have had three days of leadership skills, getting in front of some of the most important people in television, masterclasses and more. And this is only the beginning. The scheme lasts for a year and we have blocks of time together like this regularly throughout the year.
The first day was tough but doable (mainly I guess because it was only half a day!) but yesterday was a killer. Some part of me over the last few years have wondered if I’ve actually been getting better – my bad days have been less, my ability to cope seems to have risen. However, yesterday made me realise that this isn’t the case. What I have actually done is spent years and years crafting my life around what I can and cannot do in order to avoid the ‘normal’ way people work which cause me huge problems. And yesterday I had to do a day of being ‘normal’ and it almost killed me. The day was long, it was in a cramped room where we had to sit for most of the day and then it ended with networking.
For a day and a half we got told how important networking was and how it is the key way to making contacts and getting jobs. So 6pm rolled around and I was already feeling in so much pain it was awful, but then I had to go and network. And of course networking is done standing up. People might say ‘well you can sit down’… yeah I probably could have but have you tried sitting down at a party where you need to talk to lots of different people who are standing up? It is a nightmare – I didn’t bring my wheelchair (should have done but that brings different challenges during these kinds of things) so I would have been sat on the edge of the room and then… wait for someone to come and talk to me? Or try and drag someone over then explain why I have to sit down and then have that awkwardness of when does the conversation end. URGH. It is the worst.
Not living in London the three of us decided to stay at Holly’s mums flat which was really kind of her, however it is located up two flights of stairs. On a good day I can do this once. On a bad day I could not do this at all. So I ended up climbing up the stairs on a combination of my bum and my hands and knees.
I have designed my life around what I can do, but when I am supposed to fit in with what most people do I realise just how disabled I am by ‘normal’ life. Going back into training today was one of the hardest things to do, and at the end of the day I had to take my daughter back home on the train up North while Holly went off to work. As I got on the train I just cried – pain was getting in the way of me being a ‘normal’ mum to Scout. It was getting in the way of being a ‘normal’ person on the course. It constantly gets in the way of doing a ‘normal’ job.
Tomorrow I will pick myself up and look again at how I can be positive again, but for now I hate it. I hate my disability.