Tag: Benefits

Carers Rights Day

Life with PAs

I have Ullrich congenital muscular dystrophy, and consequently require support from carers.

For over a decade, I have been hiring assistants (via Direct Payments) to help me with an array of tasks, including personal care.

I prefer to recruit my own staff rather than use agency workers. This has given me much more flexibility in terms of when, how and for the duration of time I use my PAs. It also means that I know exactly who will be providing my care, which is not always the case when going down the agency route. However, with this comes the added responsibility of being an employer, which in itself can be rather daunting and stressful.

I’m in the fortunate position of having a hugely supportive family who provide much of my everyday care. Since I live with my parents, I am unable to officially employ them as my carers, and so they carry out this role unpaid!

I do appreciate that not everyone has relatives to rely on. For these individuals, the only option is to pay others, often strangers, to assist with their care needs.

Like me, they might advertise, interview and hire independently, paying for their care with council funded Direct Payments (available in England, Scotland and Wales). Alternatively they may decide to use an agency.

For others though, in times of desperation, there’s no choice but to leave their residence and spend time in respite care. I know of cases where young people in their 20s have been placed in nursing homes for the elderly, where staff have no knowledge or experience of their condition and specialist needs. Personally, I can’t imagine such an experience and count myself lucky that I’ve never had to resort to this.

Over the years, I’ve employed around 10 carers/personal assistants, and interviewed many, many more! The most successful sources of recruitment for me are friends, neighbours, word of mouth and Facebook, though I also advertise locally (newsagents, post office, school newsletters, newspapers, etc).

Carer’s Allowance

If you are a full-time carer (at least 35 hours per week) you may be entitled to Carer’s Allowance.

You don’t need to be related to, or live with, the person you care for.

My Mum is in receipt of Carer’s Allowance (currently £64.60 per week) as she is my primary carer.

This may seem like a decent sum of money, but consider ~

£64.60 = 35+ hours care work. That equates to £1.80 per hour

This doesn’t include expenses, e.g. fuel/travel costs, parking fees (hospital appointments), etc.

My Open Letter to Carers/PAs

On behalf of all who require personal/social care, I invite anyone considering taking on the role of carer/personal assistant to think carefully about what it really means before you do apply.

Firstly, this is not a choice for us – it is a necessity! We’re not too busy or too lazy to do things for ourselves. When we advertise for carers, it’s because we NEED them and not necessarily because we want them.

As physically disabled individuals, many of us cannot independently carry out essential everyday tasks such as washing, dressing and toileting. To have no option but to entrust such intimate activities to another person – a stranger – is unnatural and unnerving. We are, in effect, placing our lives in your hands when you take on the vital role of personal carer.

Recruiting carers can be a lengthy and extremely stressful process for us. There’s the initial worry over whether there will be any applicants at all, followed by the dreaded interview process.

We often find ourselves waiting around for interviewees to attend, only for them to carelessly fail to show without any notification.

Please do bear in mind that disabled peoplehave busy, purposeful lives too, sodon’t waste our time. We appreciate there are valid reasons for failing to attend job interviews, but it’s no hardship making a quick phone call or sending a text message to let us know in advance.

As you would with any potential employer, be professional and courteous.

If and when we are able to successfully recruit, it can be incredibly frustrating and disheartening when that person flippantly decides to resign days later. You may wonder how and why this occurs, but the sad fact is that for many disabled people it is a reality. We are not afforded the luxury of being able to manage until a replacement is found. No, we can’t simply wait for the right person to show up.

Some of us even have to resort to respite and residential homes in the meantime, thereby taking us away from our own homes and everything we hold dear. Try to imagine if you will, how demoralising and distressing such a situation would be if it happened to you. I therefore reiterate how important it is to think before applying for a role as a personal carer.

Are you dedicated, trustworthy, reliable, able and willing to learn? Ask yourself: are you considering care work for the right reasons? (it is not an easy option!)

Your role as PA may be demanding and will involve a variety of tasks. You will be responsible for the safety and wellbeing of your potentially vulnerable client/employer.

So, if your attitude to care work is casual and indifferent, this is most definitely not a job for you!

#CarersRightsDay2018

Interview | Jackie Hagan

Disabled Poet and Performer

Award winning poet and performer Jackie Hagan’s latest show, ‘This is Not a Safe Space’, explores the impact of benefit cuts on disabled peopled and those living on the margins of society. The creative mix of poetry, puppetry, stand-up comedy and audience participation draws on first-person interviews with 80 working-class people. With an emphasis on class, mental health and disability, Hagan celebrates the weird and wonky lives of those excluded from the mainstream.

Jackie Hagan is herself a queer, bipolar amputee, raised on a council estate. Her work seeks to challenge the ways in which current society relentlessly stereotypes working-class, disabled individuals.

Following on from her previous success with the solo show ‘Some People Have Too Many Legs’ and her play ‘Cosmic Scallies’, this theatre maker once again intertwines spiky humour and quirky expression, resulting in a passionate, provocative and affecting production.

1. Jackie, could you please tell Disability Horizons readers about your disability and how it has affected you and your career?

In summer 2013 I suddenly had my leg amputated [following a series of blood clots and infections]. When I left the hospital they gave me a list of things to avoid, one of them was falling over. I toured a show that year called ‘Some People Have Too Many Legs’, which won some awards.

I had been writing and performing for some time and I had always been a disabled performer – I am partially sighted, have bipolar disorder and a life limiting autoimmune disease. But, having one leg is something people can get their heads around a lot better, people like something they can see. And so it attracted a lot of attention.

As such, when people invite me to diversity events to talk about the leg I often open with a leg gag and then go on to talk about invisible disabilities or class.

2. How and why did you become a poet and performer?

When my Mum was 16 she moved from the thrill and glitter of Liverpool to an isolated new town to have me and my brother. As such, she herself became a disco, she became thrill and glitter. How else are you meant to cope? It meant I grew up to be unafraid to speak my mind in the odd way i found natural. I wasn’t ever encouraged to toe the line or be normal.


3. How does your class, background and disability influence your work?

It means I’ve always got a cob on and I’ve got loads to say that doesn’t often get said. I’ve got council estate bones and they rattle when someone slags off a young lad for dealing or looting or having a big massive telly. I understand why this stuff happens. I’m not saying we’re saints: I’m not an idiot, but I’m closer to the action, I can talk in a measured way about the real reasons. I can give you stories and images that aren’t exaggerated or underplayed. I know what I’m on about.

Obviously it also means I come up against a tonne of prejudice and moments where people tilt their head to one side and use that sing song lilt to the voice “aw, are you in a wheelchair?” etc. It’s all total bollocks and the most satisfying way to show people is by being awesome.

4. Why did you decide to write this show, and why now?

Disabled people and those on benefits are represented in the media one dimensionally. Benefits claimants are shown as sinners: [the TV show] Benefits Street depicts us as if we’re stupid and should just try harder. Disabled people on the other hand are represented as saints, super-humans and paralympians. Real people just aren’t like that.

5. What is the meaning of the title of your new show?

I asked one of the lads I interviewed, “where do you feel the safest?”                 He thought for ages and eventually he said, “in my imagination”.

The government has messed up, massively. People are committing suicide and losing their homes. We’re obviously not safe. The new generation of kids have no security in their future, never mind jobs and homes. They’ve got climate change to worry about! Of course they are obsessed with safety, of course they need to create safe spaces.

People might be used to my old work where I would make hard topics fluffy and palatable. But in this show I need to give it to people straight. That doesn’t mean it’s unrelenting bleakness – no one can take that in, and audiences don’t deserve to have to put up with that. I know how to keep an audience with me. There’s lots of comedy and tenderness in the show, but i also know how to give an audience realities that need to be passed on. We desperately need people to empathise.

We are not safe. It is not fair. The world is not a safe space. The show is not a fairytale.

6. It celebrates and puts forth the lives and experiences of a section of society often misrepresented or ignored entirely by the mainstream. Why do you think that is?

If you [society] ‘other’ us, then you can feel less empathy and understanding. If you lack empathy, it gives people a free ride, it makes the problem go away, because it means we don’t matter.

7. Based on 80 interviews, your show intertwines poetry, DIY puppetry and stand-up comedy. That’s quite an eclectic mix! How do you begin to plan and produce such an original and engaging piece?

Humans don’t think in linear stories, we think in snippets and recurring images. It makes absolute sense to me to collect voices and stories and for me to keep on writing and writing. I then siphon it all down into central questions that I want the audience to think about, and eventually get right down into the essence which is the hour of the show.

In real talk that means A1 flipchart paper, post it notes, about a thousand gallons of tea and one amazing sound producer (Dave James who sat in a room and listened to 16 hours of interviews with me several times). I eat when I make stuff and put on about two stone. But I’d rather be a fat writer than frustrated and at my ideal weight!

8. What do you hope audiences will take away from the show?

  1. One person’s trying doesn’t look like your own.
  2. You don’t have to feel guilty for what you have. It’ll get in the way of you wanting to help.
  3. Classism is constant and as abhorrent as racism, sexism and homophobia! Learn to recognise it.

I’d like to thank Jackie Hagan for taking the time to speak with me.

My interview with Jackie was originally published by Disability Horizons, for whom I am a frequent contributor.

Connect with Jackie Hagan on Twitter and visit her website for news and more information.