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Weary for many reasons, so my activist feathers are not so erect after the excitement on Wednesday March 13th, at the Independent Living Fund vigil and the start of court proceedings to challenge the legality of the government’s consultation.

I started this blog on Thursday while watching Channel 4’s programme ‘Born to Be Different’. This documentary has followed a group of disabled children since birth.  Zoe, a disabled girl of 11, trots off to mainstream secondary school for her first time. She is a bubbly child, stoical with a cheeky smile.

I’ll write about this programme in another blog.  For now I want to note the poignancy of Zoe’s journey into adulthood. It will be fraught with extra difficulty against the backdrop of what we were fighting for on Wednesday, and the hideous ideology that has lead to it. I’m apprehensive at what awaits these young people. How the mainstream can coo in awe at them now, the seeming heroism of their battles with their impairments; yet the polarization is plain. After all, some people out there espouse that disabled children should be put down as too expensive. Whatever else, hit past 16 and voila, from cute kid to scrounging crippled adult.

I will never forget Wednesday. The morning passed in a very British mix of sunshine, rain, hail and blustery wind. During the speeches at the vigil, I delivered this ironic piece penned by myself and Sophie Partridge (both current receivers on Independent Living Fund) for the occasion.

We would like to announce to you advance notice of a new perfume range. 

“Parfum de piss” – the authentic aroma of the neglected disabled person, capturing the fragrance of the lavatoire, fresh from the soiled bed and chair.

This scent is for those special enforced moments, hours, and days, when the care funding and independence is cut.

Available to you now in several varieties.  

“Damn-You Dew”, the delightful smell of meaningless lives and empty existence.

“Non-Veggie”, with the top note stench of the individual disabled person starved of fresh food.

“Bouquet de midnuit”, an essence of frustration that encapsulates captivity – within your bed, your four walls, set against the happy aroma of folk living their lives.

“Desperation”, the ultimate scent, full of the final inevitable pong of condemned worthlessness.

Available shortly from Ex-recipients of the Independent Living Fund

Manufacture supported in the UK by the Department of Work and Pensions.

People laughed where we hoped and the point was made. Expect to hear this skit again in various guises over coming months.

The rest of Wednesday was bathed in a grey indecisive light. We were lead past road-works and cobbles to the side of the court; the famous front entrance not accessible (of course). Inside we clogged up the security checks, and filled the corridor in our wheelchairs; lawyers in their gowns nervous in picking through such an outlandish, unprecedented gathering of the disabled. An usher guided us graciously in the right direction. We are informed the accessible toilet is three floors up. I predict a queue, as on the occasion we went to the central lobby in Westminster, after the Hardest Hit March last year. Never had the like been seen.

Today, we are in a modern court room, a sterile place. I scribble notes in my journal – and hope I’ve distilled them into some decent shape below.

How far they (the legal folk) seem from us, I muse, as we, disabled people, fight for basics they can scarcely understand. Rows of books stand attentive on uniform shelves. I wonder if you are real, you books in the court? The Royal Courts of Justice. Do you groan with helpful law, while we sit, sit, sit, most certainly sit, defiant-stony, fitted into any reasonable corner we find, a bristling company of wheelchair-users and allies.

It’s a modern room and disappointing to my writer’s sensibilities. The lights are insipid boxes on the ceiling, white and characterless. Microphones hang high by the wigs, barristers and judge alike.

Our barrister begins. A spiel of sub-clause, tab, contexts and M’Lord. We sit, as we must, in the best effort of silence we can manage. Page 54: he quotes, elucidating the judge. Panglossian: a word not liked.

Independent Living is the jargon term: so says our barrister. A sharp thought hooks my mind at those words: independent living. Does any of this truly link to whether I am condemned to sleep in my own pee? To live with dignity, to be the most I can be?

The benches look new, horribly, squeaky new in a strange shiny flat-pack wood appearance. I sit next to my ex-husband, and good friend Gabriel Pepper, who is one of ‘the five’ bringing the challenge to court. With a secret smile I think of the dusty pews, church fonts, standing stones and endless ancient wonders I have seen on holidays with him over the years. Holidays possible because I have ILF funding…

Words and more words from barrister, from the judge. I dismiss the ugly carpet with its prissy pretend gothic motifs and realise how alien we are in this august environment. Stubborn and made radical, not so polite with our flaunted impairments.

In the chill dry air, solicitors pass notes; the defendants – the DWP – shake heads, faces emotionless. The tedious technicalities of the process plod on.

Sly naps threaten us as points are picked over, paired to strange bones we cannot recognize. We cough, gurgle, swallow, yawn, fidget. We are what we are and make the effort to listen, as the legal process begins the tentative untangling of our lives, our survival. I leave when nature calls, causing a pleasing rearrangement of the court space; this is our reality, we shall not apologise for it.

That was the end of my involvement in day one of our battle regarding ILF, as it strained into the public eye. Not public enough; the new Pope hogged far too much time regarding TV coverage. But we will be back and we will prevail.

So, as I prepare for bed (with assistance), let me say this; we fit uneasily into the labels you give us; the ‘severely’ disabled. But do not for one moment believe that term equals meekness and our silence – it never will.

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