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How carers can get lost

I was telling a friend the other day about my first job I had as a fully fledged adult (pre kids).

I was young but full of confidence (even though I was new to the industry I was working in) and thought that I could do anything.

And I could, to a certain extent. My life was my own. No one was enforcing options on me or taking freedoms away or saying ‘ NO! You don’t fit in here’. Like they do now.

Being a parent carer now comes with a lot of ‘nos’ and doors and options and opportunities taken away from you.

Despite all the best will and intentions in the world, as a parent carer you don’t fully get the life you want and that’s longterm or just on the day-to-day.

It’s not because of the children, I must add, but society, authority and the way that people still disregard disability or don’t even think about it altogether.

It is sometimes like driving a car down a series of dead-ends. You’re all packed up and confidently on the road and then you turn down a street you can’t get through. So you try again, on a different street this time but you hit a wall. You’re always ‘heading somewhere’ with good intentions and everything is in place only to find out you can’t quite access it, or you are told no, or the route is longer and more complicated than anyone else’s, or you have to get out of the car and build the road yourself.

Our days are forever like this.

Anyway, I digress.

After a successful interview for this first job I was offered a job on the spot.

These were the days before email so it was a verbal offer and the boss of the company said: “We’d love to have you and pay you £8,000 a year.”

‘Pardon me?’ I said. Now, we’re going back a good few decades and a good wage for a twenty-something then would have been about that as a starting point but I said: “No. I want £10,000 or I’m not accepting.” Those words actually came out of my mouth.

When I think back I don’t recognise myself.

Anyway, the boss was taken aback a bit but later offered me the job at a higher rate and all went well.

I would never do that now. of course. Never squeak above the noise of everyone else’s every day life as my voice just isn’t that strong anymore, it doesn’t fit, I forever feel like I don’t belong.

That bolshy teenager who turned into a positive, ambitious, upbeat and confident twenty-year-old is forever lost due to years of being told ‘no’ as a parent carer.

After having my child I tried to get back into work only to discover that no nurseries that I approached would take on a child with disabilities.

My career came to a screeching halt.

So I tried a life of leisure, only to find out that if I dared go into an exercise class and my child cried, the nursery assistant would come rushing into the aerobics class, babe in out-stretched arms, saying ‘she won’t stop crying’.

Family and friends would help out occasionally but not on a regular basis as it’s just too tiring, this caring for a disabled child, so I could never regularly find part time work or attempt those silly exercise classes for a bit of ‘me time’.

No. Society was very firmly saying that my place was locked away at home with my child.

I applied to the great DWP for financial help only to be told I was doing okay and that my child ‘didn’t look that bad’ at the assessment to see how much money I could get as income support. I got a lowly £8 a week.

I tried to take my child to ‘regular’ playgroups and toddler classes but none are inclusive nor adapted for disability and I have to either give up on them or break out into a thousand sweats to ensure that my child keeps up with everyone else by lifting her and holding her and speaking for her.

Years later and you realise that your child has so few choices already in life. They are given one school to go to and one class within that school and physiotherapy is offered on site – but only in term time. Only in term time? So the disability goes away during school holidays?

Speaking of holidays and outings they require a military operation on a minute-- schedule. And you have to rely on third parties to assist you and that always goes wrong. From train staff not showing up with ramps to planes taking hours to board you to trying to get to use lifts in shopping centres that are full of kids or people who can’t be bothered to take the stairs.

The doors close and it’s ‘another no’.

And don’t get me started on parking in disabled bays. When you have a wheelchair accessible vehicle which is super large and a huge powerchair to unfold from out of the back of the van you HAVE To find a shopping complex with lots of available blue badge parking as it’s the only place to park. So choices are narrowed down again as to where you can go and if some idiot in a swish soft top (or large Land Rover) does their usual then they have taken the bays anyway.

Oh, how I’d like to drive a swish soft top or a large Land Rover.

So you see, a lifetime of ‘nos’ and blockages and preventions and crushing rejections due to my child’s disability has robbed me of the confidence that I once had.

It’s robbed me of the energy too, as all the energy I have in me goes towards caring for my child then fighting for her rights to get better health, social care and educational services. What little is left I use to fight ignorance in society but honestly, it’s so prevalent now that I don’t have the patience or the time or the willingness to get more abuse thrown at me.

So I grow meeker still as I grow older. I put my child to the front, while I go to the back. I shout with vigor for her equal rights but never give myself the same courtesy.

I didn’t realise all this was happening and if my twenty-something self saw me now she wouldn’t recognise herself.

I don’t either, actually. But I’m too exhausted to do anything about it.

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