Blog Action Day – Human Rights

Blog Action Day 2013Every year since 2007, thousands of bloggers have come together for one day to talk about one important issue. Previously, bloggers have focused on the issues of poverty, water and climate change. This year, we discuss Human Rights:

Recently a woman from Glasgow with primary progressive multiple sclerosis won a ruling (thought to be the first of its kind) that changes to housing benefit breached her human rights, paving the way for similar appeals.

Since April this year, social tenants who are deemed to have too many rooms have had their housing benefit cut, the so-called ‘spare room subsidy’ or ‘bedroom tax’. The woman in this case lives with her husband in a two bedroom house, and lost 14% of their housing benefit, resulting in arrears with their housing association.

However, tribunal judge Lyndy Boyd ruled that the woman’s case must be viewed within the context of the Human Rights Act 1998 and the Housing Benefit Regulations 2006, and ‘it would be incompatible with the appellant’s rights under Article 14 of the European Convention on Human Rights read with Article 1.’

Due to the woman’s severe disability, she is not able to share a bedroom with her husband (who also provides care during the night), and as such, their house is not under-occupied. The tribunal ruled that they required a bedroom each and a decision to cut their housing benefit therefore breached her human rights.

The woman’s bedroom measures 3.2m by 3.1m. Her ceiling tracking hoist is 3m by 3m, her hospital bed is 2.2m by 1m. She also needs her electric wheelchair next to her bed, a wheelchair ramp, remote power door entry, specially widened doors and a wet room. She is assisted by specialist carers three times a day who also need to be able to move around the room freely.

The Department of Work and Pensions have commented only to say ‘we will need to look at this particular decision in detail’ and that ‘tribunal decisions at this level do not set a precedent.’ Therefore anyone else in a similar situation could also have to endure the stress and humiliation of this process. We can only imagine what this couple went through whilst still having to live and cope with severe disability on a day-to-day basis.

I for one though am full of admiration that they found the strength to take the case to tribunal. The DWP may claim this is not a precedent, but this couple has surely given a much-needed voice to thousands.

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“Pity Is Just Another Form of Abuse”

when life hands you lemons‘Pity is just another form of abuse’ – a powerful and provocative statement. This is Michael J Fox, my childhood heartthrob, talking recently to The Guardian newspaper about some people’s reactions to his diagnosis of Parkinson’s at the age of 30.

He makes an interesting point though. I don’t want people to pity me either when they discover I have MS. Pity is disempowering and serves only to make the person feeling pity on my behalf more powerful and somehow superior to poor, suffering me. Just pat me on the head and ask my friend if I take sugar.

In fact, in common with many people who have experienced a life shattering event such as cancer, Michael J Fox believes that Parkinson’s has been ‘a gift, albeit one that keeps on taking’. MS seems to be unusual in that respect; I haven’t met many people with the condition who are willing to echo that sentiment, at least openly. Why not?

He also raises a subject I hadn’t previously given much thought to – ‘a lot of times, people who are in a health situation become the observed patient and other people project their own feelings on to them: ‘No, you’re too tired to go there,’ ‘No, you don’t want that.’  This very much adheres to an old-fashioned model of disability, where it was assumed that everyone else knew better than the person living with the condition themselves – perhaps a form of control disguised as benevolence.

He makes a further reflection which resonated deeply with me, ‘I talk about it (Parkinson’s) because it’s there, but it’s not my totality.’ I have had internal (and blog-based) debates about this – is MS taking up too much of my life? After much soul-searching, the answer I came to was a definite ‘No’. Sure, it’s there, but then so are many other facets of my life. My blog and campaigning are a slice of my life (and why deny MS? ) but I am a sum of all it’s parts.

I fell in love with Michael J Fox all over again when he says the best way to overturn pity is to find the humour in the otherwise doom-and-gloom situation. That’s exactly why my blog strapline is ‘….a funny old life with multiple sclerosis…’

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MS, DLA And Work….

MS, DLA and WorkLet’s get one thing straight. DLA is not an out-of-work benefit. In fact, it helps many people with MS stay in work.

The Government and media’s growing focus on ‘fairness for taxpayers’ leads many to believe that disabled people are a separate group who contribute nothing to society.

A Freedom of Information request, published in August this year, stated that the number of working age people receiving DLA is 1,839,000, of which the number of those in employment is 386,000 (21%). There are 127,000 people living with MS in the UK with just 50% of them claiming some form of DLA (63,680).

Working with a variable and unpredictable illness is difficult enough in a recession-hit economy and with hardening, right-wing attitudes towards anyone disabled, it’s no wonder the figures for those with MS in employment are so shocking:

  • Fact – more than 75% of those with MS say their condition has impacted their employment and career opportunities.
  • Fact – up to 80% of people with MS stop working within 15 years of the onset of the condition.
  • Fact – up to 44% of people with MS retire early due to their condition (the European average is 35%).
  • Fact – people with MS lose an average of 18 working years.

As DLA is phased out and replaced with PIP, people with MS will be forced to submit to humiliating re-assessments to check that we are indeed still living with a degenerative, incurable illness. Note the word ‘incurable’. Perhaps the Department of Work and Pensions should be renamed the Department of Miracles?

Working with MS means coping with reduced dexterity, cognitive impairment, limitations in mobility and overwhelming fatigue, among many other symptoms. Coupled with some employers lack of knowledge and understanding of MS and it’s easy to see how staying in the workplace can seem like an uphill struggle.

I’m fortunate. After a hideous year of relentless bullying by my previous employer and colleagues which ultimately led to me being sacked for having MS, I now work for someone who has taken time to learn about the condition yet is also aware of the strengths I can bring to my job.

DLA can make a real difference to people – just ask David Cameron, our venerable Prime Minister. The multi-millionaire (and son of millionaires and son-in-law of millionaires) once claimed it too…

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Free At Last…..

graduationThe books have been packed up, the paperwork has been shredded and my house has been cleared of post-it notes and last-minute scribbles.

I sat my last ever university exam on Wednesday and it’s all over bar the marking. It’s been a rocky old road to get here. It was a part-time six-year degree and as regular readers will know, I had a fully-functioning brain until two years ago when MS came along and messed around with it.

Since then, it’s been an uphill struggle. I nearly gave up after five years, but quite fancied the (Hons) after my name so ploughed on for another year. It was worth it though and the sense of achievement has been incredible, as was the bottle of bubbly I had waiting in the fridge.

I’ve been lucky. My MS nurse has written a letter in my defence, something along the lines of, ‘…please excuse Stumbling, her cat ate her study notes and her brain doesn’t work properly’. Which is just as well. I struggle to remember my shopping list, so how on earth was I supposed to remember a whole year’s worth of facts, ready to regurgitate onto blank paper? In my shaky handwriting?

It didn’t help when a fellow student emailed me the day before asking if I had revised Esping Anderson. If I knew what it/he/she was, perhaps I might have. As it was, to me it just sounded like an Ikea dining table.

Anyway, I arrived at the exam centre, ignored the last minute swotters, and took my seat. I set out my pens and bottle of water. The woman next to me set out a lucky teddy, three bottles of water, two packets of nuts and a bag of chocolate buttons (where did she think we were, a cinema?). The clock on the wall ticked round to 10am and we turned our papers over.

I was obviously in the wrong exam, sitting the wrong paper and toyed with the idea of pretending to faint. But as if by magic, the words rearranged themselves and they actually started to make sense. Three hours later, and with a lot of padding and random waffling, I was done. I clicked my pen off and shuffled the papers together.

As I left, I noticed the woman sadly pack her teddy away. I stumbled out the building, high on relief and headed home to google Esping Anderson.

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I’m Well Adjusted…

I've Got Your BackMy chiropractor called me the other day and said, ‘oi, your boss has just been in for an appointment and told me you don’t want to book in as you think you’re too fat. Don’t be daft, come in!’

‘Can’t. Too fat. Could break your bench, honestly. Potentially very, very embarrassing.’

I’ve been visiting the chiropractor for over 12 years now. He magically sorted out my neck problems, brought on by exiting a car through the roof at high speed (not classy, pretty painful) and he’s also treated The Teenager since he was a toddler.

That Fateful Day two years ago when I woke up unable to speak or walk properly, he was the first person I called. After talking gibberish, he summoned me to his clinic, ran through some neurological tests and quietly told me to go straight to hospital. He was the first to put MS on the table and helped keep me sane through the long, anxiety-ridden diagnostic process.

Anyway, I went to the clinic, putting all fears of rolling off the bench with an ungainly thud to one side. Thankfully, the chiropractor is a consummate professional and put me at ease straight away as I brought him up to speed with everything that had happened since I last saw him (the list was long and he was awfully patient). Then it was time to have the treatment. I pulled off my boots with an unladylike ‘Oof’ and popped (heaved) myself on to the bench.

On my front. On my back. On my side. Probably the most exercise I’ve had in a while. Turn neck this way and that. Leg up, arm down. Why do I always imagine those mice from ‘Bagpuss’ when I’m lying there? You know, the ones that sing ‘we will fix it, we will make it new, new, new?’ Marginally better than ‘The Flumps’ I guess.

I felt like a new woman after the treatment and mentally kicked myself for leaving it so long. My body felt unfurled, stronger. There’s not an awful lot that can be done to make living with MS easier, but having regular chiropractic sessions certainly helps. It’s like a great big sigh of relief running through my whole body.

Finally, I stood up and asked, ‘Lovely! Am I normal now?’

With good grace, the chiropractor declined to answer…

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