By Jane Holmes
When my daughter was born, back in 2001 with severe disabilities, my biggest worry was curing her so that she could walk.
She had profound feeding difficulties and was tube fed so I wanted to make that better too.
Oh the wisdom of hindsight!
Now, at 21, she has still never walked nor eaten anything orally but I realise that those physical differences are of very little consequence. In short, disability doesn’t matter.
There is nothing wrong with it and it is not a bad thing, It’s just different. When we’re at home with the right support in place, we barely notice it.
What is often wrong and bad though, is society’s reaction to disability. Of course, there are kind people and, in general, we are warmly welcomed. But I think most parents of disabled children would agree with me, when I say that if I had to sum up the experience in one word, it would be ‘fight’.
This is what people don’t see. They see disabled people being given benefits or being members of the Motability scheme and assume we’ve got it made.
Ever since the Government announced benefit cuts for disabled people back in 2010, there has been a discernible shift in society’s perception of what disabled people should or shouldn’t be entitled to.
What hasn’t changed though is the constant battling we have to engage in with the various service providers in order to get what our children really need. I sometimes wonder whether those providers we hassle day in, day out, think we enjoy it.
As if spending time chasing people up hour after hour, day after day is something we do as a relaxing hobby. Or perhaps they think that our Machiavellian strategies or our issuing of high-handed threats in order to get our children’s basic needs met is what we do to while away the boredom of full-time caring.
If there’s one thing we ask people to understand, service providers or the general public, it’s that we are not on the scrounge for the sake of it.
We do not have time to waste and in many cases, carers are pushed to the absolute limit. Fighting for support on top of caring is really, really difficult. Those that don’t complain are not all finding life easy, they are just finding it too impossible to fight.
Disabled people are not a drain, they are not a nuisance, they are not taking money away from anyone else. They are living in a country that has committed to supporting them properly and in return they will enhance our society by contributing wisdom and a depth of experience rarely found anywhere else. They keep our values sound, challenging our preconceptions. They are important and to be valued. They just need to be given a chance.
According to Government statistics, 22% of our population is disabled. More than half of us will end up disabled before we die.
We are fortunate that we live in a country that has pledged to support us. As a society we need to do everything we can to make sure that happens, for all our sakes.
Jane Holmes is the CEO and founder of Building for the Future, a Wokingham-based parent-led charity for children with additional needs, offering activities, support and therapies. For more, log on to: www.bftf.org.uk
