Tag Archives: disability

Mar 08 2019
8 Comments
Blogging

Writing The Wrongs

One of the best things about having a blog is encouraging others who also want to start one.

Over the years, since 2012 when I first signed up to WordPress, I’ve spoken with people all over the world about how to get started, how to keep up the momentum and just how to have a real idea about what it is they want to say – what they have to say.

Back then, in the dark old days, I wanted to express what was happening after my MS diagnosis, what I was feeling. I was disoriented, lost and experiencing an entire whirlwind of emotions. Plus, I was also being slowly bullied out of my job.

I reached out to a writer who had written a very personal account of her MS in a national newspaper, about her struggle to come to terms with a life with MS. It was raw and brutal, exactly how I felt. We communicated back and forward through emails and she encouraged me to start a blog. The rest is history. Thanks to her, I’ve gone from blog to PhD.

I always wanted to be a writer, so perhaps that is why I feel privileged to be following this path now. MS shunted me from the career I was building to a building career – I work as a project manager for a building company. The irony doesn’t escape me.

But I wanted something more. I love my job – it allows me the flexibility and creative talent to excel at what I do, but it’s not everything. It also has an end-point. My energy is limited, I fall asleep at awkward times, I trip over stray wires, I repeat stuff. Luckily, I work with my best friend who knows more about MS than anyone else.

Writing has allowed me to discuss, dissect and analyse every single niggle I’ve ever had with MS, and bringing up a Teenager throughout a life with MS. Abject loneliness has been replaced with a worldwide hug of immense proportions. You guys just … get me.

You’ve been through the ups and downs, you’ve seen The Teenager through the best and worst of times. You even took the time to send him messages of support when he was in a grim place and he read every single one with a smile on his face.

Writing is incredibly powerful and I didn’t realise that until I started. I poured out all the pent-up angst and you were with me through my epic Pity-Party-For-One.

It’s hard, baring your soul. But, you guys have shown me that it is so, so worth it.

If when I attain my PhD, you’re all invited. Without you, it wouldn’t happen.

Reach out and lift up …

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May 10 2017
10 Comments
Media

You Don’t Matter …

marchThere are 13 million disabled people in the UK, with 89% of them eligible to vote in the upcoming General Election.

13 million.

Have you heard any of the political parties address us and our needs directly during the election campaign?

Have you been overwhelmed with election promises about rolling back the savage cuts and stigma we have faced since the recession began way back in 2008?

Of course you haven’t. We don’t matter. Our purpose is purely as a scapegoat – when the chips are down, blame the people least likely to be able to fight back. It’s cheap but brutally effective. According to the tabloid newspapers, we all drive top-of-the-range free cars, doss around at home, unwilling to work and more than happy to leech off the state.

Yet this election is central to our future and we need to make our voices heard. A few facts:

  • 1 in 5 disabled people struggle to pay for food.
  • 1 in 6 wear a coat indoors as they are unable to afford heating.
  • The number of physically disabled people deemed homeless has increased almost 50% between 2010 and 2016.
  • Motability cars are being removed from disabled people at the rate of 700 a week – or 35,000 a year – due to reassessment from DLA to PIP.
  • 85% of people with MS will be unemployed within 10 years of diagnosis.

If I hear (No Saint) Theresa May appeal once more to ‘ordinary hard-working people’, I will scream. What is ordinary? Normal? What if I’m disabled and still work hard? Well, Theresa, I guess that makes me extraordinary, given the almost insurmountable barriers in my way.

At the last general election, I cornered one of our MP-hopefuls in the street as he was campaigning. I politely asked him what he was going to do about the disabled parking abuses rife in this area. He couldn’t get away quick enough. It’s a non-problem. I challenged someone who had parked, without a blue badge, in a supermarket car park on Monday at around 8am. His reply? ‘Disabled people don’t get up early, what’s your problem? Now **** off’.

It seems we face a battle on two fronts – being ignored by all the main political parties and the increasing hostility by the general public (whipped up to almost hysterical levels by the media, owned by billionaire political party donors).

I despair. Frankly, I’m worried.

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Jun 13 2015
6 Comments
My Ramblings

Who’s The Minority?

disabledDo you consider yourself to be disabled?

Well, if you have MS, you are disabled, according to The Government.

I’m not sure how I feel about this term.

What is disabled anyway? Unable to do what others can? Are we disabled by our own limitations or by society and our environment?

On the flip-side,what does healthy mean? Do you know a healthy person? I’m not sure I do and interestingly, a new study by the University of Washington throws up some truly gobsmacking results.

An analysis of 188 countries revealed that just 4.3% of the population have no health problems. 4.3%. Further, a third of the world’s population – 2.3 billion people – has at least five ailments.

Who’s disabled now?

If 95.7% of the population have at least one ‘disability’, even with my maths, it pretty much means we’re all in the same boat. We are a ‘disabled’ society.

In a way, I feel comfortable having a set-in-stone diagnosis. My random symptoms have been gathered under one umbrella, MS. There is legislation in place to ‘protect’ my rights. All well and good until an employer chooses to ignore them and bully you out of your workplace. I speak from experience.

Funnily enough, one of the people who took great pleasure in sacking me for my MS actually took many, many more sick days than I ever did (and unlike me, she had paid sick leave). So who’s the disabled one? She was off work so often, it was a surprise to see her in the office.

Why are those of us with a Confirmed Diagnosis of Something or Other lumped together into a group, best dealt with by suspicion, fear and enmity? Even though I worked just as hard/harder than anyone else, I became someone to be viewed with distrust.

If unhealthy (gah, what a term) people are the majority, where have we gone wrong as a society?

Years ago, I used to work in a tremendously busy office. So-and-so had a special cushion for her chair as she had backache. Another person had migraines and had to take frequent screen-breaks. Someone else had diabetes. A typical office then.

Perhaps it is time to recognise that as a society, we all deal with some pain or ailment on a daily basis and it is our duty to protect and nurture each other. We’re only human after all.

And the irony?

The job I was unceremoniously sacked from was within a care company, specialising in helping ‘disabled’ people to retain their independence.

You couldn’t make it up …

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Dec 07 2012
8 Comments
My Ramblings

But You Look So Well…

hunchbackFive words guaranteed to raise the blood pressure of us ‘invisible’ MSers, ‘but you look so well’ is normally accompanied by a sharply raised eyebrow and a sceptical look. Obviously I’ve been making the whole sorry saga up and have accepted help and sympathy under false pretenses.

The meaning behind these words is stark. You said you were ill, but you’re clearly not. Go away, you attention-seeking drama queen.

I get asked to explain my symptoms. Dodgy balance, extreme fatigue, wonky hands, difficulty walking in a straight line, falling over. They nod then say, ‘well, at least it’s not cancer, eh, bet you’re glad it’s nothing more serious?’  Would it be ok to beat them about the head with my walking stick?  It’s got to be useful for something. There is an illness hierarchy and MS languishes somewhere near the bottom.

Sure, on the surface I do look fine, and since being diagnosed with MS, it’s important to me to still look my best. Adapting to the role of a ‘sick person’ has been a difficult transition and one I am still going through. Yet, for society to regard you as an ill person or a person with a disability, you need to conform to their expectations, otherwise you can just whistle for support.

I should stop washing, start wearing baggy-kneed leggings bought in bulk from Primark, rub chip-fat into my hair and under no circumstances dare to put even the merest hint of make-up on. I must give up work, apply to go on the Jeremy Kyle show and start hanging out in Poundland, spending my benefits on cheap junk food.

A well-meaning friend joked that MS fatigue is a pretty cushy symptom. You get to doss around on the sofa all day, doing nothing more taxing than changing the telly channel. What they don’t see is the fear, the anxiety and the utter terror of an uncertain future. MS is sneaky. It’s symptoms can strike at any time and there’s no set pattern. You can be chatting away in Starbucks, feeling quite normal, enjoying your latte when suddenly the cup drops from your hand. Or you can be walking along the street when your foot just drops from under you. Socially, MS is dire. It steals your confidence.

So if you see a person with MS looking well, just think of the effort they’ve made despite everything. And don’t mention the Poundland carrier bag full of Frey Bentos pies and Bacon Bite crisps…

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