Guest post by Cath, from Driffield, East Yorkshire. She’s sharing her story as part of our 100 days, 100 stories campaign.
Three years ago, I developed a motor neurone disorder. There’s no definite diagnosis, except that it will keep getting worse and that there is no treatment – a pretty grim prognosis.
In practical terms, it means that in three years I’ve gone from being able to do cartwheels and handsprings to needing a wheelchair to get more than a few paces.
I’m really independent – militantly independent, in fact – and while there are more and more things that I have to get help doing, I’m fighting it off for as long as possible.
Loss of control
For example, I really don’t like being pushed in my wheelchair. The only time I’ve ever allowed it was when we went off-roading, and I got my husband Phil to hang on to the wheelchair so I didn’t fall into a ditch!
But when I get on a train using the wheelchair ramp, I find that often the person assisting you starts pushing you up the ramp without asking. In other situations, I’ve even been moved out of the way without being asked.
It’s very strange – obviously people are trying to help, but it’s very dehumanising. It’s a bit like asking someone for directions, and them putting their hands on your shoulders and pushing you the right way, rather than telling you. It’s the loss of control that I find quite terrifying.
Assumptions people make
It’s automatically assumed that you’re not capable of doing things.The number of times I’ve spoken to someone in the street and mentioned work, and they’ve said, ‘You work?’
It’s even worse now that my condition has started to affect my speech. All of a sudden I get treated as if I’ve had 30 or 40 IQ points knocked off – and by people who never treated me like that before, which upsets me.
Unfortunately I’ve spent a lot of time off work and recently had to stop. This is mostly because my employer wasn’t prepared to make reasonable adjustments for me.
I’m not able to talk about it at the moment as I’m going through an employment tribunal, but it has been hugely stressful, and wasted a lot of my time during a period when I was in a much better physical state than I am now.
The attitude of too many people is that disability issues are all about benefits and illness.Yes, many of us do need benefits – often because of all the extra expense involved in being disabled – but that doesn’t mean we are all just sitting at home doing nothing.
Disability isn’t necessarily the same as infirmity. You can be disabled without being ill, and if you put all the right adjustments in place, a disabled person can be just as able to work and take part in society as a non-disabled person.
As a disabled person working with children, I hope I help them see that we’re all different – disabled or not, we all have different things to bring to life.
And it should be noted that we have as many faults as everyone else too. We’re not little suffering saints, as many people expect us to be. We can be just as arsey as everyone else!