Monday, 25 April 2011

Busy Bank Holiday

I find myself with so much to blog about that I feel I may have to end up writing about nothing instead. I wanted to cover politics, that wedding, disability politics and a myriad of other things, but have had such a busy couple of weeks that I haven't had time. Now each subject has slipped to a position of equal importance and so I can't decide where to start.

I wanted to examine my recent experiences with various disabled people's organisations (DPO's) and how each one has different politics. What would this splintering of direction mean for the future of disabled people and our fight for equality? I also wanted to delve into what exactly we mean by "equality" and whether this fight might cause disabled people to end up worse off that we were went we found ourselves unequal. As a republican I am finding the way British society is ramping up the crazy as we run up to the 29th of April is obviously causing me to feel the need to write something. Just not sure how much of feelings I want to make known as everyone seems to have been swept up in the spirit of this "joyous" occasion. Then there was the whole question of assisted suicide that seems to have even found a supporter in the BBC. With Terry Pratchett making a documentary following a man's visit to Dignitas and claiming it to be a dispassionate study of the questions around the right to die, even though Sir Terry is a personal supporter of assisted death, those of us who who feel deeply against changing the current laws must make our voice heard or we will loose the debate. That's just the top three.

In the end I must admit I find myself so full of thoughts that I end up with my head spinning. Never the best time to write something that will exist forever in the ether of the world wide web. So instead I will knock out a short blog, with no rants or deep thought. No this time I feel just thought I'd mention that this bank holiday my wife and I have been busy building furniture for my recording studio. In fact we have been action painting some doors for a cupboard that will be the home of my unused analogue synth collection. Loads of fun throwing paint around in our living room, and they have come up great. So hopefully by the start of May I will have a studio that works and can start writing music again, after an age away.

Before going all arty, I did an interview for a new online magazine, called Sin Zine with the marvellous burlesque and performance artist Marnie Scarlet. I videoed the interview and it will be up on my Youtube page soon, and the Sin Zine interview will follow shortly too. I plan to do a series of these interviews, and put them online, so if you know anyone who you would like to see me chat with please get in touch.

Lastly, I have signed up to appear in the new Graeae show, Broadway Babes. It is going to be a crazy show like their famous Rhinestone Rollers show, but with Broadway musical numbers. I shall be dancing my way through a half hour set of classic musical tracks... and I shall be in drag! Yes all those years when I was a New Romantic, wearing tons of make up will finally come in handy. I don't think I'll be going the whole hog, mainly as I really don't have the figure for it. Instead I feel I'll be a kind of dancing tranny. Tee hee. Anyway, if you fancy seeing how it turns out, come along to the Greenwich festival this year and search us out. I'll keep you all posted when rehearsals start.

So I hope you are all enjoying the sunshine and are having fun this Bank Holiday? Today is the first day I've a minute to spare, and so I feel I may sign off now and go outside to soak up some sun before the weather goes back to it's default setting... of rain.



Wednesday, 13 April 2011

The Last Taboo? Pain - Why does it hurt us to admit to it?

Chronic pain has been part of my life for thirty years. I have always had periods of pain ever since I was born, but after my spinal collapse at 15 pain has been a constant companion. In fact I grew to treat it like a separate entity, that accompanies me where ever I go, one that has moods and throws strops if I ignore it or forget to treat it with respect. Having said that, I do not let this awkward unseen friend effect my life and what I do.

Through out my life I have met other people who experience chronic pain, and have found that they have tried to find their own ways of living with it. The one common thread that ran through all the discussions was they wanted to keep the pain they were in a secret. No matter how much the chronic pain haunted their lives, everyone I spoke to asked me not to tell anyone.

A few years ago I worked with someone, who I shall called X. One day they noticed me wincing behind some filling cabinets, and seeing signs they knew well invited me for a coffee. We sat and chatted about our secret relationship with pain. They admitted that no one in our office knew, and they wanted to keep it that way. To be able to go to work they self medicated with a mixture of morphine, a legal prescription drug, and Amphetamine, an illegal stimulant. At the weekend they took a legal cannabis derivative and fell into a pain free trippy sleep. They were sure that if our bosses found out about how they coped with their pain it would be the end of their career. Years later I met another fellow of the pain, I shall call them F, and they coped with it in a very different way. They swore by alternative methods, and found that some worked to great effect. They also asked me to keep their secret.

In the past I have always tried to keep it quiet, and have even over compensated for something that no one else knew about. During my years working with on the BBC's From The Edge program I tended to be considered their "action cripple" and was asked to do the items that involved doing crazy things. I always said "Yes", even though I knew they would cause my pain to flare up to almost unbearable levels. I could easily have turned the job down, but felt by doing I would be letting pain control my life. I never told a soul.

As I get older I no longer feel the need to hide anything. As I tend to admit that I have issues with pain I keep finding that so many people I know have similar problems. They nearly all want it kept a secret. What is at the root of the desire to hide how much pain we are in? Part of it is not wanting to conform to the stereotype that disabled people are sickly and weak, but this is a secret kept from everyone, even other disabled people. Another factor is that look of sympathy that we get if we do admit to it. Recently I saw an old colleague from the DPU and we had a chat about the old days. When I told them about the amount of shoots I went on while in agony, I saw that look. I also wonder if we are ashamed of the pride we feel by fighting our pain. I mean the world around us seems to buckle under a head ache yet we battle through in agony. See, we're tough. I know how great it makes me feel mentally when I do something that my pain should prevent me from even thinking about. So maybe I still an action cripple, just an ageing one.

Last weekend I met a gang of wheelchair using action junkies and one by one they all admitted that they had issues with pain. These discussions led to them all admitting that doing adrenaline fuelled stuff was their version of self medicating. One of the great parts of meeting these guys was being able to talk about pain openly. Pain and embarrassing hospital stories, but that is another blog.

Whatever the reason, chronic pain seems to be one of the last taboos of disability. Until those of us who live with it feel we can come clean, we can never really be ourselves and if we do come out with the chant of "in pain and proud" then I think we'll find that we aren't as alone as we imagine.

Sunday, 3 April 2011

Mother's Day Thanks

I just wanted to go on record as saying thank you to my fantastic Mother, Joyce. She has always been a wonderful mum, loving, caring and supportive. She has always been there for my brother Steve and me, and I am sure that growing up with the knowledge that we are loved unconditionally helped us become the people we are today. This is a photo of all three of us on holiday in Somerset, back in 1980. This is actually the last photograph of me (I'm the one in the middle) walking. The following year, my spine collapsed and I ended up using a wheelchair.

It's funny, but as you get older you gain an understanding of your parents that was beyond you when you were young. Recently I suddenly grasped how much strain it must have been for my Mother, having me as a son. Not only did she have to cope with her first child being born with cancer, but she was also told that she should not expect him to live beyond the gage of five. I obviously blew that prognosis out of the water, but it did mean that she brought up a child that might die at any point. Not only that but I did seem to keep being quite ill at key stages. Being clear of cancer for 15 years means you are totally cured, so when I was rushed off to hospital a few months after my 15th birthday it must have seemed like a cruel cosmic joke. Luckily it wasn't cancer, but it did mark a huge change in who I was and how I lived. Time and time again, life does seem to have thrown a spanner into the works whenever it seemed that my Mum could stop worrying about me.

So, even though my Mum won't see this (She is totally technophobic and has no computer) I felt I should tell the world that I am eternally thankful to my Mum. Through out my life I have had many people tell me that "It's all right for you" when talking about that apparent way I cope with my disability. I am always mystified by this, and even get quite cross as I do not see that I have some secret trick that makes a disabled person who actually loves what disability brings to my life. However maybe I do. Maybe being raised by someone who made me feel special for being me gave me the ability to feel good about myself all the time? That's my secret, the strength and confidence that my Mum gave me.

Thank you Mum.

Here's a poem I wrote for her. It's called "For Mum", and the photo is of her holding me while I was in hospital as a baby.