I must have walked around with my eyes closed because if you’d asked me to describe a disabled person I’d have imagined an old person with a walking stick.
Maybe that is simply because severely disabled people weren’t seen in the community as much when I was growing up as they are now?
But because I had that image in my mind, I presumed that disabled toilets were suitable for all disabled people.
How wrong was I!
Now I have a severely disabled child in my life, I realise just how impractical most disabled toilets are.
Whoever designed them was probably catering for the same person I saw with a walking stick because if they’d met anyone like my son they’d have realised that a little extra space and some grab rails doesn’t mean it’s usable!
These days I know how important changing places style toilets are for disabled people and am saddened that there aren’t more of them in places that offer toilets to everyone else.
Supermarkets, cinemas, shopping centres, department stores, train stations etc all offer toilets to everyone apart from severely disabled people.
2 Carers allowance sucks
I mean I know I should probably be grateful that we get carers allowance at all but the current rate of £62.10 is pretty insulting really.
For that £62.10 carers of disabled people are expected to look after them for at least 35 hours a week – which works out to a pitiful £1.77 an hour!
Now, I obviously I don’t expect to be paid to look after my own child but what if you are caring for your mother in law or someone else you wouldn’t usually be expected to care for?
Is it really acceptable that carers are only given £1.77 an hour for 35 hours of care? And don’t forget that most carers do far more than 35 hours a week, but get paid no more.
Of course, you can go and get a job as well as caring, if the person you are looking after has someone else who can look after them while you’re off earning.
BUT… you are only allowed to earn £116 a week or you won’t be entitled to carers allowance at all!
I’m not sure that many people would choose to be a full time carer and have a second job but still only take home £178.10 a week would they? Especially when I point out that is way below minimum wage!
This was one of the biggest shocks to me when I first learnt about carers allowance. I honestly, naively, thought that carers would be given an allowance which reflected the level of care they provide to people.
Especially considering how much it would cost if they were no longer able to provide care and the person had to go into residential care.
Why aren’t the government doing more to look after unpaid carers?
3 There isn’t enough disabled parking
Before I had William, I will fully admit, I was one of those people that used to get really annoyed at the number of disabled bays there are in car parks and on the street.
It seemed like they were everywhere. And it also looked like there were far more disabled bays than disabled drivers. Again, wrong!
These days I have no choice but to park in a disabled bay in a car park because I cannot get William out of the van otherwise and if I am parking on the street I tend to park on double yellow lines because all those spaces I used to see seem to have vanished!
They are still there of course, it’s just that there really weren’t that many at all and there is a huge demand for them, a demand I was blind to.
4 Language matters.
I’ve never really put all that much thought into language if I’m honest, never really been that bothered about the origins of words, especially insults. Until William was born.
Now I understand how damaging language can be when used in the wrong way and terminology which was once used to define medical conditions is hurtful to many when used as an insult.
I cringe when I hear someone use the R word and have fallen out with friends who have refused to stop using certain words, that led me to writing this article recently.
Nowadays I am far more aware of how much language matters and how important it is that people consider how they use it.
5 Having a disabled child isn’t the worst thing in the world
Honestly if you’d have told me I would have a disabled child I would have been terrified and probably wouldn’t have had a child at all. That would have been such a mistake.
Having William has changed my world. He is the happiest child you’ll ever meet, his smile is amazing. His determination and positivity is inspirational and he changes the lives of everyone he meets.
Being his mum has changed my life so much and I have amazing people in my life now who I never would have crossed paths with had he not been disabled.
I think other people still think that having a disabled child must be the worst thing in the world as they still insist on telling me I am an inspiration, they couldn’t do it, and they don’t know how I do it.
But I’m sure they only say those things because they don’t know.
They don’t know that having a disabled child is just like having a non-disabled child, you love then the same as you would have if they weren’t disabled. You’re just their mum!