"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

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The Brexit Beartraps, #2: Could dropping out of the open skies agreement cancel your holiday?

Flying to Europe is about to get a lot more difficult.

So what is it this time, eh? Brexit is going to wipe out every banana planet on the entire planet? Brexit will get the Last Night of the Proms cancelled? Brexit will bring about World War Three?

To be honest, I think we’re pretty well covered already on that last score, but no, this week it’s nothing so terrifying. It’s just that Brexit might get your holiday cancelled.

What are you blithering about now?

Well, only if you want to holiday in Europe, I suppose. If you’re going to Blackpool you’ll be fine. Or Pakistan, according to some people...

You’re making this up.

I’m honestly not, though we can’t entirely rule out the possibility somebody is. Last month Michael O’Leary, the Ryanair boss who attracts headlines the way certain other things attract flies, warned that, “There is a real prospect... that there are going to be no flights between the UK and Europe for a period of weeks, months beyond March 2019... We will be cancelling people’s holidays for summer of 2019.”

He’s just trying to block Brexit, the bloody saboteur.

Well, yes, he’s been quite explicit about that, and says we should just ignore the referendum result. Honestly, he’s so Remainiac he makes me look like Dan Hannan.

But he’s not wrong that there are issues: please fasten your seatbelt, and brace yourself for some turbulence.

Not so long ago, aviation was a very national sort of a business: many of the big airports were owned by nation states, and the airline industry was dominated by the state-backed national flag carriers (British Airways, Air France and so on). Since governments set airline regulations too, that meant those airlines were given all sorts of competitive advantages in their own country, and pretty much everyone faced barriers to entry in others. 

The EU changed all that. Since 1994, the European Single Aviation Market (ESAM) has allowed free movement of people and cargo; established common rules over safety, security, the environment and so on; and ensured fair competition between European airlines. It also means that an AOC – an Air Operator Certificate, the bit of paper an airline needs to fly – from any European country would be enough to operate in all of them. 

Do we really need all these acronyms?

No, alas, we need more of them. There’s also ECAA, the European Common Aviation Area – that’s the area ESAM covers; basically, ESAM is the aviation bit of the single market, and ECAA the aviation bit of the European Economic Area, or EEA. Then there’s ESAA, the European Aviation Safety Agency, which regulates, well, you can probably guess what it regulates to be honest.

All this may sound a bit dry-

It is.

-it is a bit dry, yes. But it’s also the thing that made it much easier to travel around Europe. It made the European aviation industry much more competitive, which is where the whole cheap flights thing came from.

In a speech last December, Andrew Haines, the boss of Britain’s Civil Aviation Authority said that, since 2000, the number of destinations served from UK airports has doubled; since 1993, fares have dropped by a third. Which is brilliant.

Brexit, though, means we’re probably going to have to pull out of these arrangements.

Stop talking Britain down.

Don’t tell me, tell Brexit secretary David Davis. To monitor and enforce all these international agreements, you need an international court system. That’s the European Court of Justice, which ministers have repeatedly made clear that we’re leaving.

So: last March, when Davis was asked by a select committee whether the open skies system would persist, he replied: “One would presume that would not apply to us” – although he promised he’d fight for a successor, which is very reassuring. 

We can always holiday elsewhere. 

Perhaps you can – O’Leary also claimed (I’m still not making this up) that a senior Brexit minister had told him that lost European airline traffic could be made up for through a bilateral agreement with Pakistan. Which seems a bit optimistic to me, but what do I know.

Intercontinental flights are still likely to be more difficult, though. Since 2007, flights between Europe and the US have operated under a separate open skies agreement, and leaving the EU means we’re we’re about to fall out of that, too.  

Surely we’ll just revert to whatever rules there were before.

Apparently not. Airlines for America – a trade body for... well, you can probably guess that, too – has pointed out that, if we do, there are no historic rules to fall back on: there’s no aviation equivalent of the WTO.

The claim that flights are going to just stop is definitely a worst case scenario: in practice, we can probably negotiate a bunch of new agreements. But we’re already negotiating a lot of other things, and we’re on a deadline, so we’re tight for time.

In fact, we’re really tight for time. Airlines for America has also argued that – because so many tickets are sold a year or more in advance – airlines really need a new deal in place by March 2018, if they’re to have faith they can keep flying. So it’s asking for aviation to be prioritised in negotiations.

The only problem is, we can’t negotiate anything else until the EU decides we’ve made enough progress on the divorce bill and the rights of EU nationals. And the clock’s ticking.

This is just remoaning. Brexit will set us free.

A little bit, maybe. CAA’s Haines has also said he believes “talk of significant retrenchment is very much over-stated, and Brexit offers potential opportunities in other areas”. Falling out of Europe means falling out of European ownership rules, so itcould bring foreign capital into the UK aviation industry (assuming anyone still wants to invest, of course). It would also mean more flexibility on “slot rules”, by which airports have to hand out landing times, and which are I gather a source of some contention at the moment.

But Haines also pointed out that the UK has been one of the most influential contributors to European aviation regulations: leaving the European system will mean we lose that influence. And let’s not forget that it was European law that gave passengers the right to redress when things go wrong: if you’ve ever had a refund after long delays, you’ve got the EU to thank.

So: the planes may not stop flying. But the UK will have less influence over the future of aviation; passengers might have fewer consumer rights; and while it’s not clear that Brexit will mean vastly fewer flights, it’s hard to see how it will mean more, so between that and the slide in sterling, prices are likely to rise, too.

It’s not that Brexit is inevitably going to mean disaster. It’s just that it’ll take a lot of effort for very little obvious reward. Which is becoming something of a theme.

Still, we’ll be free of those bureaucrats at the ECJ, won’t be?

This’ll be a great comfort when we’re all holidaying in Grimsby.

Jonn Elledge edits the New Statesman's sister site CityMetric, and writes for the NS about subjects including politics, history and Brexit. You can find him on Twitter or Facebook.