Tag Archives: disability

My poems in ‘Whose Flame Is It Anyway?’

“Whose Flame Is It Anyway?” Anthology
A celebration in words and pictures



Not my book, sadly, but an anthology by Disability Arts Cymru, with poetry, prose, art and pictures of various productions. I’ve been lucky enough to have two English poems accepted for the book, and I’m told there’s a very fetching pic of me in my ‘Queen of the Birds’ Eryr Euraid regalia 🙂

Here’s the official blurb: ‘Through “Whose Flame is it Anyway?” Disability Arts Cymru has uncovered a wealth of talent amongst young disabled people in Wales. For four years, our young poets, painters, performers and musicians have never ceased to amaze & inspire. This anthology is a celebration of their skill and passion.’

Good eh? I’ve been invited to the book launch, where I’ll be performing sign language poems, but sadly, the event is RSVP only. Sorry, folks! The poems – which I still need to compose… – will reflect the English poems I have in the book – ‘When the Dead Are Cured’ and ‘Lament of a Bilingual Poet’. If you wanna read them, you’ll have to buy the book! Speaking of which, you can order here: http://www.amazon.co.uk/Whose-Flame-Anyway-Macsen-McKay/dp/1907476091

Just to whet your appetite, here are the first three lines of ‘When the Dead are Cured’, affectionately known as the ‘Zombies Haiku’.

Zombies surround me:
Bodies, faces, say nothing.
Only their mouths move.

Ooh, I wonder what I could possibly be talking about? 🙂


I’m a fashionista! (And didn’t know it!)

The last week or so I’ve been a bit preoccupied, but enjoying the popularity of my last post, I had been a bit worried that revealing my inner, sarcastic voice might be too much, but it seems that far from it, I should let it out more often. Perhaps on a day-release basis.

Today, I’m thinking about Rod Liddle. Heard of him? As I type, he’s trending on twitter, and thus probably enjoying his own brand of popularity. He wrote a piece in The Sun that ostensibly attacks those who fraudulently claim benefits. I agree in principle – with the idea that those who fraudulently claim benefits should be put in the stocks. Where Rod and I differ, is his definition of a “not too serious disability”, the idea that there “is a lot of money to be made from being disabled” (excuse me while I cough up my coffee with helpless laughter), that being disabled is somehow fashionable (oh, so that’s why disability hate crime has gone up by 75%. It’s because people are jealous, and nothing to do with inflammatory articles like this), and that 80% of people on ‘incapacity’ are considered fit to work (erm, DLA fraud rate 0.5%, versus barely-qualified tick-boxing bureaucrats using a discredited assessment system? I know who I believe).

As a claimant of DLA, I invited Mr Liddle to spend a day in my shoes, or if he doesn’t like them, my mother’s shoes. My mother is one of those who “gets to park wherever she wants” thanks to a blue badge, and yes she does have motability car (which, by the way, is not free). Here follows a transcript of events during our day together. Enjoy.

“Arrrggh! It’s an earthquake!”
Actually, no, it’s my alarm clock. The buzzing is a vibrator – no, not that kind – under my pillow and the light is my clock. Just press the button to turn it off.
“Erm, thanks. What do I do now?”
Why don’t you try getting out of bed? That’s where I usually start.
And do be careful not to walk on your big toes.
“Excuse me?”
Well, a kink in my feet causes you to walk on the insides of your feet, distributing your body weight through your bunions and your big toes. But you see, if you keep doing that, it gets painful, as you noticed. Just make sure you focus on walking on the outside of your feet at all times OK? It’ll also help with the minor kinks in your legs if you walk that way. Just don’t forget yourself.
“All the time? What kinks?”
Well, currently the suspicion is on Hypermobility Syndrome, if so, it would explain a lot, like why my knees can dislocate, why I have raging Iliotibial Band Syndrome, and why I can do this *touches arms with thumbs on same hands while twisting arms around*
Sorry, I didn’t mean to scare you, that’s usually just a party trick.

*Later that day*
“Ow, my knee! My feet! My leg!”
Well, you decided you wanted to go shopping. If you’d told me you were planning on doing a lot of walking, I would have given you the knee brace and the walking stick. You’ve got to plan, my friend.

“Argh! What was that?”
You weren’t paying attention when you went down the stairs were you? If you misjudge the depth of a step, there’s a chance your knee will half-collapse, just to spite you. You’ve been warned.

“Hey! Why is that person looking at me like I’m a piece of dirt? What did I do?”
Erm, let me see…. ah yes, seems they asked you politely to excuse them, but you didn’t hear them, and so of course because the world revolves around them, they’ve assumed you’re ignoring them and pushed past you with a dirty look.
“What? But my earmoulds are blue for gods’ sake! Don’t they LOOK?”
Welcome to my life.

What’s going on?”
“I’m supposed to catch this train, but everyone’s walking off. What do I do?”
Quick, follow them! And see if you can pick out someone who might be easy to lip-read and ask them what the tannoy said.
“What tannoy? How do I know they’re easy to lip-read?”
Did you hear that sort of quiet white noise that sounded vaguely like Sauron gargling with a lawnmower? That’s the tannoy. You can’t, but things to avoid are beards and moustaches. After that it’s pot luck. Good luck!

“What the hell was that?”
Probably feedback from the hearing-aids. Or tinnitus. Or you’re going mad. Don’t worry too much about it.

“What’s this person saying? They keep moving their head around.”
Tell them you need to lip-read and ask them to keep their head still.
“I did, but they’re still doing it.”
Ask them again, and be a bit more firm.
“I don’t want to make a fuss.”
Sometimes you have to. Now ask them again.
“I did, now they’re treating me like it’s my fault.”
Sigh. You’ve got one of the arseholes. OK, there’s two ways you can go about this. Either give up the conversation as a bad job and wander off, which will be interpreted as rude, or try and educate them, possibly ending in a row, which will be interpreted as rude. Which do you want to do?
Is there anything I can do that won’t be interpreted as rude?”
Not if you don’t understand what they’re saying, no. You’re kind of trapped, really. Rather than put myself through the stress, I prefer to leave it. Unless they have information you need, in which case you’re definitely trapped. Try getting them to write it down.
“I did, but now they’re treating me like I’m completely stupid.”
Hmm. Wait until they’ve finished giving you the info you need, then repeat after me… ready? ‘I am an MA student, and it’s not my fault you don’t know how to communicate with deaf people. May I suggest a deaf and disability awareness course? And incidentally, fuck you.’ Now, run! Hobble, damn it. OK, you had to make a quick exit, but don’t you feel better?

“Oh, what a day. Why do my legs ache so much?”
Because you don’t walk right, even with the knee brace and the stick. Your muscles are always being pulled ever so slightly wrongly, not so much that they’ll do anything dramatic, occasional knee pop notwithstanding, but enough that they don’t like it and complain at the end of the day. I’ve found only two effective remedies; steaming hot baths and painkillers. Mind you, I’m probably not that disabled by your standards. I can still walk, after all.
“Whatever. It’s good enough for DLA, right? Where do I get it? What’s this?”
This is the paperwork. A half-inch thick form, and don’t forget to include submissions from all your consultants and doctors for every condition you cite, of course you’ll have to track them all down first, and they might charge you. but it’s worth it for the DLA right?
“I guess so…”
Well, here is how much DLA I get, and here a recent BSL interpreter invoice. Does anything strike you about them?
This one is per week, and this one is per hour. You’ll notice it’s roughly the same amount. One month’s DLA is about six hours of BSL interpreting, or 16 taxis, since public transport here is crap and I’m hardly going to walk to the train station. Let me know if you can figure out a profit margin. You’ll notice I’m actually losing money, hence why DLA was brought out in the first place. It’s because being disabled is actually bloody expensive. Are you getting it yet?
“Well, bugger me.”
There is someone here who gets more DLA than me though, perhaps you’d like to give her shoes a try before you go to bed?
“All right, then.”
Allow me to present my mother. I’m sure she’d love to let you borrow her shoes for a bit, oh, she’s already gone. Seems she’s enjoying her new-found freedom and decided to visit Westonbirt Arboretum, just for the hell of it.
I know, wild, huh? Anyway, here you go…

*A bit later*
“Wheezes… gasps… wheezes”
Oh, did I not mention? She has Chronic Obstructive Pulmonary Disease. Come on, it’s another step to get upstairs. You can make it.

“Oh, I’m so tired. Those stairs are so far.”
Well, this is what you have to do to get higher rate mobility. You want a car don’t you?
“I suppose so. Can I go to bed now?”
Certainly, just put this mask on first.
“What the hell is this?”
It’s an oxygen / breathing mask. She also has Sleep Apnoea, so if you don’t wear this, you’ll stop breathing. Come on, it’s easy to set the straps. I’ll show you how to switch on the machine…

Oh, what’s that? You’ve had enough of pretending to be disabled? You’d rather be able-bodied? But I thought it was so fashionable! Come on, you said a month, you haven’t even made it one day!

[DISCLAIMER: The above events did not happen. Maybe I’m being unfair to Mr Liddle, maybe he’d last longer than one day. But not as unfair as he’s been in his bloody article.]

Liddle’s article – http://politicalscrapbook.net/2012/01/rod-liddle-disabled-the-sun/

Diary of a Benefit Srounger’s great response – http://diaryofabenefitscrounger.blogspot.com/2012/01/sacrifice-more-hang-cheats-out-to-dry.html

Telling Our Stories

Tomorrow, I’m due to perform my BSL poetry at Bristol’s M Shed as part of Resistance: Telling Our Stories, an event that has been organised as a (slightly belated) nod to Disability History Month, with the backdrop of Resistance: Which Way The Future?, a media installation directed by Liz Crow of Roaring Girl Productions which is on at the M shed from 5th January to 5th February 2012. More info can be found here:

I was looking forward to this anyway, but with the twitterstorm that blew up over the #spartacusreport (which I gleefully added my little raindrops to) last monday, the triple defeat of the government in the House of Lords over the Welfare Reform Bill, which Lord Fraud, excuse me, Freud, then attempted to roll back as soon as the Labour peers had left* and the governments’ response which basically seemed to be that they were going to keep pressing ahead with the WRB, despite all protests, it seems to me that the themes of Resistance are just as relevant as ever.

*Mason Dixon gives a colourful and Hollywood-worthy version of events: http://masondixonautistic.blogspot.com/2012/01/us-and-them.html

Resistance looks at the Nazi eugenics program, Aktion T4, during which hundreds of thousands of disabled people… well, disappeared. They just went away in grey vans and didn’t come back. And apparently, not very many people questioned it at the time. It probably didn’t help that Nazi Germany was trying pull itself out of a recession, and the propagandists had done their best to tell everyone how much these ‘useless eaters’ were costing the state, via posters like this: http://en.wikipedia.org/wiki/File:EnthanasiePropaganda.jpg
The translation is: “60,000RM. This is what this person suffering from hereditary defects costs the Community of Germans during his lifetime.”

When some Minister or newspaper bangs on about benefit scroungers / how much the welfare state is costing / benefit fraud, while the coalition sits idly by while the HMRC aids and abets what have to be crimes against the treasury, I think of that poster.

And it’s working. Disability hate crime on the up, people living in terror of Work Capability Assessments, people with mental health issues having to be talked down by kind voices after receiving a particularly nasty letter from the DWP. Well fucking done.

A little fact-checking.
1) DWP own figures put fraud at less than 0.5%.
2) Of the “5.2 billion lost to error and fraud”, only 1.2 billion of that was fraud.
3) The coalition has said they want to cut payment of DLA by 20%.
4) They also say they want to ‘protect the most vulnerable’.
5) Unclaimed benefit in 08/09 was 17.7billion (12.7billion means tested, 5 billion tax credits).

Compare and contrast 3) and 4) with 1), 2) and 5). Conclusion: there are far less benefit scroungers out there than the coalition would have you believe. Am I wrong? Feel free to google it and check. In fact, I want you to google it and check. Challenge me. Challenge the coalition. Just please don’t ignore the Welfare Reform Bill.

And if, after reading the Spartacus Report, you think we should all take a deep breath and be allowed to look at the WRB proposals properly, go over to ‘Pat’s Petition’ and sign the petition to stop and review the cuts to benefits and services.

Spartacus Report/ Responsible Reform:
Pat’s Petition:

For my part, I hope lots of people will come and check out the Telling Our Stories event, there’s lots of happy stuff as well as serious stuff, and it promises to be at the very least an interesting day out! Plus, there’s my poetry 🙂 For those who can’t make it, the media installation will be on until 5th February.

Which Way The Future?, indeed.

Spartacus Report

The main event for me yesterday was the launch of the spartacusreport / Responsible Reform report on the proposed changes to DLA, funded, written by and supported by the very people the proposed changes affect, and ooh, does it make for enlightening reading.


For example, where 98% of respondents opposed the qualifying period being raised to 6 months from 3, this somehow got translated by the government document as “some organisations were in favour of our proposal to extend the Qualifying Period from 3 months to 6 months before benefit would be paid… However many organisations and some individuals were not in favour of this” Er, excuse me? 98% against gets translated to ‘many’ and ‘some’ and 2% for is translated to ‘some’? Making it look as though the numbers aren’t as damning as they are? Google it if you don’t believe me. Even Boris Johnson objected in his submission: http://blogs.telegraph.co.uk/news/danielknowles/100127807/boris-johnson-turns-his-fire-on-the-governments-reforms-to-disability-living-allowance/ I think I’m starting to like Boris. It’s a strange sensation.

What I find even more damning though, is that the #spartacusreport was trending on twitter yesterday, even at first place for a short while, then hovering in second for the whole afternoon. It received support from various celebrities, including Stephen Fry and Tim Minchin, and even John Prescott noticed. It attracted millions of tweets.

And yet, where is the BBC report on this amazing reponse to the Welfare Reform Bill? Where is the Daily Mail story on this socially-funded and researched report? This must be it: http://www.dailymail.co.uk/news/article-2084445/Incapacity-benefits-10-000-sick-Britons-abroad-claiming-1m-week.html
Oh, my mistake. Also, notice the ‘MAIL COMMENT: the welfare state has become a bonanza for the feckless’, mere days after being forced to print that, actually, the fraud rate for DLA is less than 0.5%: http://www.dailymail.co.uk/news/article-2083294/Boris-Johnson-attacks-Tory-plans-benefits-squeeze-disability-living-allowance.html?ito=feeds-newsxml
It’s like they’ve learned nothing.

Where is ANY mainstream news report on the twitterstorm that #spartacusreport inspired? It’s times like this that make me feel paranoid.

And how appropriate then, that the Resistance Exhibition Event: Telling Our Stories opens at M shed in Bristol this weekend, as a nod to Disability History Month. I’ll be performing BSL poetry in Studio 2 on Saturday as part of this event, all are welcome! http://mshed.org/whats-on/events/resistance-exhibition-event-telling-our-stories/ Check out the poster – how cool is that? Posed by none other than Liz Crow, the director of Resistance. Come on down!

Oh, and another thing: according to the pope, gay marriage is a threat to humanity’s future: http://www.reuters.com/article/2012/01/09/us-pope-gay-idUSTRE8081RM20120109
There’s a lot of things I could say in response to this, but a tweet by Patrick Strudwick has summed it up perfectly:

Today the pope said that gay marriage undermines “the future of humanity itself”. I say telling people not to use condoms already has.

Well, quite.


An hour after I published this, the Daily Mail posted this. They pretty much agree with everything I said, and more. They tear into Cameron and the WRB, defend the disabled and quote the Spartacus Report. Not only do I take back (some) of what I said about them in my previous post, I think I may need a lie-down to get over the shock.


Fan me, someone, fan me.

Riots or protests?

So the rioters have been going through the courts at a breakneck pace, and they’re being threatened with having their benefits taken away. I’m sure that will really worry the millionaire’s daughter, the primary school worker and the budding musician. Well, maybe the musician… It seems that the riots were truly classless, with many tearing up the town regardless of social background. Apparently these people were ‘protesting’ against the government and all its various stupid ideas since the coalition took power, and some people are arguing online that these protesters should be treated as wannabe freedom fighters rather than criminal idiots.

Here’s my view:

If they were protesting against government reforms and all the misery that the government has caused the little people since it took over, if they were protesting the rich tax-dodgers, the bank bonuses, the benefit reforms that have led to untold stress, the fact that it now appears that the police really did shoot an innocent man dead – again! – and the insane cuts to various vital services etc etc etc then…

Why didn’t we see ATOS centres and JobCentres in flames? Why weren’t the crowds marching on parliament demanding equality for all? Why didn’t we see people trying to do to Canary Wharf what the Daleks couldn’t? Why wasn’t every single RBS branch looted and decorated with symbolic effigies of Fred Goodwin? Why wasn’t the House of Commons pelted with paint and stones? Believe me, if the ATOS centres or JobCentres had gone up in smoke, some people would have happily toasted marshmallows in the ashes. (For the record, these are rhetorical questions not suggestions, so if the local ATOS centre gets torched, I had nothing to do with it. Honest.)

Instead, what did these protesters do? Indiscriminately attacked buses, police cars and firefighters. Burned shops and homes to the ground. Whatever didn’t burn, got looted. Homes burgled, passersby beaten up and mugged. Three men mown down. Petrol bombs hurled at police. Reporters hospitalised. In general, forgive me if I’m wrong, but they seemed to be picking the easy targets and hitting them up, much like this government has been doing.

Take for example that they have just admitted that their disability benefit reforms have been based on iffy figures, figures that have been clearly been, at best, not looked at properly, giving an unfair impression of the ‘rise’ in DLA caseloads: http://www.leftfootforward.org/2011/08/dwp-admits-disability-reform-based-on-dodgy-figures-as-reported-by-left-foot-forward/

Or the smearing of disability benefit claimants as ‘scroungers’: http://www.independent.co.uk/news/uk/politics/charities-angry-over-ministers-crackdown-on-disability-benefits-2326481.html

Or letting huge corporations avoid amazing amounts of tax while reducing the police, the fire service and the army.

And now, what have the protesters / rioters really achieved? A hell of a lot of mess, nervous tension, and ‘Call me Dave’ has given the police powers to disrupt social networks. Hoodies probably banned (I like hoodies, dammit), increased legal powers to deal with those who upset the state – for whatever reason. I bet ID cards are back on the agenda within a few months. The Daily Mail must be loving this. Now they’ve got an excuse to curtail more freedoms and for what? A free TV and some Basmati rice? I hope it was worth it.

On the upside though, it has been heartening to see communities pulling together, helping each other out and uniting in the face of the worst riots we’ve had since, well, the last Tory government. Community clean-ups, wombles, facebook support groups for the police / emergency services and fundraising for those who lost their homes in the riots make me feel like there’s some hope for us yet.

If only we could all get along like this without having to have a riot first.

Unusual Skills Week!

A couple of weeks ago, in the last week of July, I was lucky enough to attend Unusual Stage School’s skills week. A Disability Arts Cymru project, and with me based in Cardiff / Wales for my degree, I was able to gate-crash an amazing week with an amazing bunch of people. We worked on script development, performance, voice, singing (yes, singing) movement (where I tripped over the instructor) improv and physical theatre (not, as I had imagined, a sort of hippy wafting pretending-to-be-trees exercise, but in fact a type of improv). My fellow skills week attendees all knew each other with a couple of exceptions, but I was made to feel so welcome it was incredible. Usually, I struggle a lot with socialising with non-signers, but this lot were so patient, apparently happy to repeat themselves ad infinatum, and even better, a few of them knew a couple of signs and the manual alphabet, which in some cases can make or break a conversation. I even ended up staying over during the course, despite my misgivings (leaving my parents unsupervised and I typically don’t handle hearing social situations well) and I can honestly say that at the end of the week I didn’t want to leave. I wanted another week! Hell, I would have stayed for a month. We could call it ‘Big Brother DAC’ and sell the TV rights to the BBC…

One of the happiest moments had to be sitting on a makeshift bench in Cardiff Bay with the usual suspects, nibbling ‘starters’ we’d got from Tesco’s (chargrilled mushroom pasta and three bean salad, mmmm) and chatting in the evening sun while waiting for our accommodation to prepare our (somewhat unimaginative) supper. The less said about Hamgate, the better. But I couldn’t really complain as we were staying round the back of the Millennium Centre, an incredible location, and I was staying with a great bunch of people. Have I already said that? Well they were. From the bass tones of Richard, to the sweetness of Gwilym, to the cuteness of our youngest member, to the outgoing Laura, well you get the idea, I’d better stop here or I’ll make myself sick. But I loved them all, I really did. From my Persian General to the PAs.

And let’s not forget the reason we were all there – skills week! I now know that I naturally sing in a low pitch (no Katherine Jenkins then) that my speech / vocal pitch range is wider than I had thought, that there are many, many ways to say ‘yes’ when really you mean ‘no’, that physical theatre doesn’t necessarily involve pretending to be trees and improv in all its forms can be a lot of fun.

I learned that coffee and toffee are a nice combination for ice cream, that a buffalo burger actually tastes quite nice, and that a Strawberry Capirinha is a lovely cocktail. I also learned that it’s possible to put on four pounds in five days. I’ve lost those extra pounds though, thanks to the virus I picked up as a souvenir. One of those viruses that reduces your IQ level by half and makes it hard to think while you sniffle into your tissue.

It was still worth it though and I’d happily do it again! Love you guys!


The irony.

As I was forced to go through an ATOS medical last wednesday 11th, thousands of people were marching through London in protest at ATOS bullshit. As part of the Hardest Hit campaign, they marched to Parliament, and many went on to meet their MPs, and had imaginative posters with “ATOS don’t give a toss” and one with braille; “We’re being ……….. by the government!”. Apparently the braille word meant ‘screwed’…

But brilliant that people are rising up against ATOS, hopefully we can draw attention to how hopeless they are, and how completely inappropriate it is to give a company contracts to review benefits and then offer them bonuses for how many people they kick off said benefits. Biased much, anyone?

Their decisions in some cases have been outrageous, and their treatment of those who have mental disorders frankly shocking. How in heck is someone sitting at a computer clicking a mouse for half an hour supposed to assess someone’s mental health, especially if they’re not specifically trained to do so? Don’t we have psychologists for that sort of thing?

As for questions I was asked in the medical – almost word for word the form I filled in… oooh, must be 9 months ago now. That’s right, 9 months from initial claim to medical. And two months after last claim to medical. *Blows raspberry*

And the physical test at the end? Can I stand up? Can I raise my foot? Can I bend my knee? Can I stand on one leg and touch my nose whilst at the same time reciting the alphabet backwards? Well, maybe not that last one, but you get the idea.

I don’t think I have a future as a performing seal, but hopefully I have a future as Students With Disabilities officer at Cardiff University. That’s right, I’ve put my name down, no backing out now. Design meeting for posters this week, and gotta come up with a manifesto by Monday. Watch this space!