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I woke up at 8am, unusual for me as I don’t move much at that time and need some time to be fully alert. My kitty, Bess, is quite surprised at my early rising. PA Jan helps me sit up and take medication. A little while later she assists me into my wheelchair. After some initial ablutions, it’s a cuppa; and today a wait by the phone as I psyche myself up to do an interview on BBC Radio 5 Live in regards to the court hearing about the Independent Living Fund.

The government announced its closure in December 2012 but even before then many of us and our organisations felt the bell tolling its doom. The lacklustre and often nonsensical consultation process seemed nothing but a tokenistic gesture, and that is why we brace ourselves for the judicial review to challenge it.

But I want to rewind five days. Last Saturday I was delighted to be performing a spoken word piece at Criptease, part of the Women of the World festival at the Southbank, in the Clore Ballroom. A neo-burlesque show celebrating disabled women’s bodies and sexuality, I’m proud of my involvement, past and present. This is me, one strand to my work, part of who I am. Defiant and unabashed. To talk sex and strip is as much of a political act to me as is going on a rally.

Another day and here we are fighting for freedoms so basic it is criminal we have to spell out the intimacies of our needs to make a case.

What do non-disabled people do in the mornings? Do they have a pee, a shower, breakfast? There are always variations on a theme, but what is so hard to grasp here? I do these things – with assistance. I leave my home – with assistance. I socialise – with assistance. I work – at the Southbank in a burlesque show – and very much beyond; with assistance.

Back to 8.35am this morning. Radio 5 Live call and I do my best for 4 minutes. What independent living is about; the realities; the hypocrisies from the government. I briefly mention my appearance at the Southbank – because the assistance to pursue my potential as a writer/performer, is as fundamentally important as that support to get out of bed.

It’s a cold day on The Strand as I manage to find parking in an area where Blue Badges cannot be automatically used. There’s a decent gathering by The Royal Courts of Justice, with its iconic facades. The press cram through us, steely for photo-opportunities. I speak to any who ask – this is not a day to be sniffy. I say a few words to Tracey and Ellen from Inclusion London, see many friends and old campaigners.

Speeches are made, we are roused and rallied. I feel that deep glow of pride that comes from unity. Together we are stronger, a cliche but true. Soon it is my turn; to read out an ironic sketch penned for the vigil, by me and Sophie Partridge, close friend and comrade in the cause. The clouds gather in darkness and sharp white hail falls on my red hair and green coat. Unperturbed, I deliver ‘Eau de Piss’, to laughter and good effect.

More on that tomorrow. And the surreal experience of going into the court room with so many other wheelchair users.

I’m tired now. I am ‘severely disabled’ after all…

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