"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: Getty
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The Prevent strategy needs a rethink, not a rebrand

A bad policy by any other name is still a bad policy.

Yesterday the Home Affairs Select Committee published its report on radicalization in the UK. While the focus of the coverage has been on its claim that social media companies like Facebook, Twitter and YouTube are “consciously failing” to combat the promotion of terrorism and extremism, it also reported on Prevent. The report rightly engages with criticism of Prevent, acknowledging how it has affected the Muslim community and calling for it to become more transparent:

“The concerns about Prevent amongst the communities most affected by it must be addressed. Otherwise it will continue to be viewed with suspicion by many, and by some as “toxic”… The government must be more transparent about what it is doing on the Prevent strategy, including by publicising its engagement activities, and providing updates on outcomes, through an easily accessible online portal.”

While this acknowledgement is good news, it is hard to see how real change will occur. As I have written previously, as Prevent has become more entrenched in British society, it has also become more secretive. For example, in August 2013, I lodged FOI requests to designated Prevent priority areas, asking for the most up-to-date Prevent funding information, including what projects received funding and details of any project engaging specifically with far-right extremism. I lodged almost identical requests between 2008 and 2009, all of which were successful. All but one of the 2013 requests were denied.

This denial is significant. Before the 2011 review, the Prevent strategy distributed money to help local authorities fight violent extremism and in doing so identified priority areas based solely on demographics. Any local authority with a Muslim population of at least five per cent was automatically given Prevent funding. The 2011 review pledged to end this. It further promised to expand Prevent to include far-right extremism and stop its use in community cohesion projects. Through these FOI requests I was trying to find out whether or not the 2011 pledges had been met. But with the blanket denial of information, I was left in the dark.

It is telling that the report’s concerns with Prevent are not new and have in fact been highlighted in several reports by the same Home Affairs Select Committee, as well as numerous reports by NGOs. But nothing has changed. In fact, the only change proposed by the report is to give Prevent a new name: Engage. But the problem was never the name. Prevent relies on the premise that terrorism and extremism are inherently connected with Islam, and until this is changed, it will continue to be at best counter-productive, and at worst, deeply discriminatory.

In his evidence to the committee, David Anderson, the independent ombudsman of terrorism legislation, has called for an independent review of the Prevent strategy. This would be a start. However, more is required. What is needed is a radical new approach to counter-terrorism and counter-extremism, one that targets all forms of extremism and that does not stigmatise or stereotype those affected.

Such an approach has been pioneered in the Danish town of Aarhus. Faced with increased numbers of youngsters leaving Aarhus for Syria, police officers made it clear that those who had travelled to Syria were welcome to come home, where they would receive help with going back to school, finding a place to live and whatever else was necessary for them to find their way back to Danish society.  Known as the ‘Aarhus model’, this approach focuses on inclusion, mentorship and non-criminalisation. It is the opposite of Prevent, which has from its very start framed British Muslims as a particularly deviant suspect community.

We need to change the narrative of counter-terrorism in the UK, but a narrative is not changed by a new title. Just as a rose by any other name would smell as sweet, a bad policy by any other name is still a bad policy. While the Home Affairs Select Committee concern about Prevent is welcomed, real action is needed. This will involve actually engaging with the Muslim community, listening to their concerns and not dismissing them as misunderstandings. It will require serious investigation of the damages caused by new Prevent statutory duty, something which the report does acknowledge as a concern.  Finally, real action on Prevent in particular, but extremism in general, will require developing a wide-ranging counter-extremism strategy that directly engages with far-right extremism. This has been notably absent from today’s report, even though far-right extremism is on the rise. After all, far-right extremists make up half of all counter-radicalization referrals in Yorkshire, and 30 per cent of the caseload in the east Midlands.

It will also require changing the way we think about those who are radicalized. The Aarhus model proves that such a change is possible. Radicalization is indeed a real problem, one imagines it will be even more so considering the country’s flagship counter-radicalization strategy remains problematic and ineffective. In the end, Prevent may be renamed a thousand times, but unless real effort is put in actually changing the strategy, it will remain toxic. 

Dr Maria Norris works at London School of Economics and Political Science. She tweets as @MariaWNorris.