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Penny Pepper's Blog - disability arts online
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Penny Pepper on the dawn of her half century / 10 August 2010

Penny as the angel Gabriel, 1971, at 'Special' School © Penny Pepper

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It leaves me incredulous every passing day now, as the big event hurtles closer. That is, on 16 August I am 50. Oh my. It's as unreal as the recent diagnosis of Borderline Personality Disorder. I'm 50 and disordered? Maybe I'll simply be proud. I know I can pass as younger if I want. Vain, moi? Always.... As for BPD - that's me. Extreme and emotional and a happy drama queen. Mostly.

Apparently my death was predicted to be at around the age of 20 years (and almost occurred at 10 years) from my physical impairment, and the BPD is likely to have been swinging me on extremes since adolescence, so getting this far must be something of an achievement. That thing of surviving which counts as something.

Yet as I sit here in London listening to the drizzle - what consumes me most is how, as a creative practitioner, I continue to battle the system; that faceless monster who is harnessed to condemn those of us who dare to whisper, shout, step and wheel outside the box.

I am embroiled in an ongoing issue with Islington Council concerning housing benefit and council tax. I've made mistakes as I've struggled through their paperwork, forms and repetitive requirements, I will never deny this. Yet it seems to me they simply don't have a system that allows for someone like me to work and be self employed; to be designated 'severely disabled'; someone who is entitled to working tax credits and who overall earns very little as often happens to creatives. Someone who is on direct payments yet can create work...

I am quite convinced they would prefer me to give up work and make their lives easier. This is the reality behind the sombre statements politicians make about assisting 'the disabled' into work. They don't want it really, only on their own terms and if it's easy and convenient, and because it sounds good. It strikes me as farcical in a time of recession and spending cuts looming everywhere that they may indeed force me back on benefits.

I can't begin to describe the 10 months of farcical to-ing and fro-ing to benefit departments, debt officers, the great volumes of paperwork, of insensitive and even aggressive letters and responses to me. Kafka couldn't take it!

I've lost work and opportunities as the effects crushed my physical and mental health. I've been diagnosed with a heart condition and two 'breakdowns' in this time. I live hand to mouth on work that I've done in the past and the small things I can manage and develop now.

But I am Penny and somehow I will find resilience past the big 5-0. I will keep naming and shaming as far as I can go.  And of course I never stop working. I am a writer, a weaver of words, a teller of tales in as many forms as the world will let me.

Tell me if you've been there too!

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