"I could not exist, much less live a fulfilling life, without my carer"

Writing for National Carers Week, Hannah Buchanan explains why the role of carers in our society is so important, and why we should be more aware of what they do for us.

This week is National Carers Week. In my eyes, carers are a group of unsung heroes who do not get the recognition they deserve.

Of course, as human beings we all know what it means to care. We believe in things we are passionate about, we care about friends and those who mean something to us. But being a carer is something different altogether. It means taking responsibility for somebody else’s life while forgoing your own. It is not an easy job and is fraught with challenges but is one that is very rewarding not to mention necessary.

For example, I write regularly on many different subjects. But let me put a very simple question to you – how do I get to the computer to file my pieces? How do I get enough energy sustenance and nutrition to complete the task? If I fancy a night out clubbing with my friends, how do I get there and who is waiting for me when I come back?

In all three scenarios the answer would of course be with my carer’s help. I could not exist, much less live a fulfilling life, without my carer.

Having been born with cerebral palsy, the role of caregiving has always been extremely important to me. In the earlier part of my life my main caregiver was my mother, who brought me up as a single mother and undertook all the duties around caring for me. She did this with little help from the Government, and very little help from the outside world. She was one of the army of unpaid carers who devote their time and energy to their children with disabilities.

My mother nurtured me in many ways, encouraging my ability to read and write, and also musical abilities too. She wanted the best for me and fought to ensure I got it. This meant my mother made many sacrifices for me. She could not go out to work nor earn money because her life was consumed with looking after me. She knew there was nobody else to help and the buck stopped with her. Although we visited my grandparents regularly when I was younger, and I could be left with them for short periods, they were not in any position to offer long-term assistance.

When I was 18, I went away to boarding school to do my A-levels. I took them at Alton College and boarded at Lord Mayor Treloar National Specialist College, a facility specially equipped for those with disabilities. Once at university in Oxford, I was cared for firstly by in-house students on gap years, and then later on care was provided by specific agencies, enabling me to take full advantage of the rich academic and social programme Oxford had to offer. It was a beautiful city, a beautiful time and there was never a dull moment. It was the first time I felt truly alive.

Following university, I moved to a local authority facility in Hampshire where my freedom was somewhat curtailed due to staffing constraints. I existed but looking back I never really lived. This was nobody’s fault - it was just the circumstances I found myself in at the time.

But it was when I moved into my bungalow that caring really came into its own. After meeting many nice people I established a firm relationship with the carer and friend I have to this day. She encourages me to live life to the full and I couldn’t do what I do without her. She enables me to take risks - not risks that put me in mortal danger, but perhaps situations I have not faced before that I would benefit from. Can you believe that before I met her I had never experienced the London Underground?

I feel in control of my own life thanks to carers. I feel empowered and able to make choices. But at the same time,  I never take my carer for granted and miss an opportunity to appreciate them. It is true to say that disability is to some extent a social construct. Since I met my current carer I feel far less disabled than I used to. I feel stronger and more confident – ready to participate in life.

I used to struggle to come out the house. I didn’t have agoraphobia or anything like that – I was just frightened. I’d been cooped up in the disability hostel for a long time and was just out of practice with life. But my carer helped me to regain that confidence.

However, I also feel that carers are highly underestimated and underappreciated in patriarchal society. To me, the job of carer should be on par with that of doctor. Doctors save lives but carers maintain quality of life so that a hospital admission is not needed in the first place. They keep people clean, hydrated, well-fed and happy. They help them maintain their hygiene and dignity. In short, my carer enables me to be an active participant rather than a spectator in my own life. That is a great thing to help somebody do and I feel it is woefully undervalued, both financially and personally, in 2013.

We need to be kinder to carers, pay them better and value their contributions more. Without my carer’s help, I literally would not be able to get out of bed in the morning. Without her encouragement, I would never have whizzed around the Underground. I am glad she’s here.

 

Everyone needs a hand to hold. Photograph: Getty Images

Hannah Buchanan is a blogger with a specific interest in LGBT, disability, and feminist issues and the potential crossover between them. Follow her @HannahBoo3131

Photo: André Spicer
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“It’s scary to do it again”: the five-year-old fined £150 for running a lemonade stand

Enforcement officers penalised a child selling home-made lemonade in the street. Her father tells the full story. 

It was a lively Saturday afternoon in east London’s Mile End. Groups of people streamed through residential streets on their way to a music festival in the local park; booming bass could be heard from the surrounding houses.

One five-year-old girl who lived in the area had an idea. She had been to her school’s summer fête recently and looked longingly at the stalls. She loved the idea of setting up her own stall, and today was a good day for it.

“She eventually came round to the idea of selling lemonade,” her father André Spicer tells me. So he and his daughter went to their local shop to buy some lemons. They mixed a few jugs of lemonade, the girl made a fetching A4 sign with some lemons drawn on it – 50p for a small cup, £1 for a large – and they carried a table from home to the end of their road. 

“People suddenly started coming up and buying stuff, pretty quickly, and they were very happy,” Spicer recalls. “People looked overjoyed at this cute little girl on the side of the road – community feel and all that sort of stuff.”

But the heart-warming scene was soon interrupted. After about half an hour of what Spicer describes as “brisk” trade – his daughter’s recipe secret was some mint and a little bit of cucumber, for a “bit of a British touch” – four enforcement officers came striding up to the stand.

Three were in uniform, and one was in plain clothes. One uniformed officer turned the camera on his vest on, and began reciting a legal script at the weeping five-year-old.

“You’re trading without a licence, pursuant to x, y, z act and blah dah dah dah, really going through a script,” Spicer tells me, saying they showed no compassion for his daughter. “This is my job, I’m doing it and that’s it, basically.”

The girl burst into tears the moment they arrived.

“Officials have some degree of intimidation. I’m a grown adult, so I wasn’t super intimidated, but I was a bit shocked,” says Spicer. “But my daughter was intimidated. She started crying straight away.”

As they continued to recite their legalese, her father picked her up to try to comfort her – but that didn’t stop the officers giving her stall a £150 fine and handing them a penalty notice. “TRADING WITHOUT LICENCE,” it screamed.


Picture: André Spicer

“She was crying and repeating, ‘I’ve done a bad thing’,” says Spicer. “As we walked home, I had to try and convince her that it wasn’t her, it wasn’t her fault. It wasn’t her who had done something bad.”

She cried all the way home, and it wasn’t until she watched her favourite film, Brave, that she calmed down. It was then that Spicer suggested next time they would “do it all correctly”, get a permit, and set up another stand.

“No, I don’t want to, it’s a bit scary to do it again,” she replied. Her father hopes that “she’ll be able to get over it”, and that her enterprising spirit will return.

The Council has since apologised and cancelled the fine, and called on its officials to “show common sense and to use their powers sensibly”.

But Spicer felt “there’s a bigger principle here”, and wrote a piece for the Telegraph arguing that children in modern Britain are too restricted.

He would “absolutely” encourage his daughter to set up another stall, and “I’d encourage other people to go and do it as well. It’s a great way to spend a bit of time with the kids in the holidays, and they might learn something.”

A fitting reminder of the great life lesson: when life gives you a fixed penalty notice, make lemonade.

Anoosh Chakelian is senior writer at the New Statesman.