The following article is written by Penny Smith for The Guardian.
Tomorrow, my one-woman show Lost in Spaces launches an exciting campaign, Quality Writing for All, run by the Literary Consultancy, which will raise my profile as a writer/performer and create much-needed opportunities for others.
Like anyone in a similar position, I grasp these chances. But such events – as with appearing on Newsnight during the election campaign – are entirely reliant on my care support. Never mind doing the work I love, this support starts at the moment I wake up, when my care worker Emma, helps me out of bed, to use the toilet, to have breakfast, get dressed and so on.
I pay for some of my assistance from the independent living fund (ILF). It’s terrifying that this closes on 30 June, after 27 years of supporting severely disabled people like myself, to live in their own homes. Let’s be plain, I’m frightened.
I’ve been on ILF since 1998 when my first marriage ended. Before that, my husband did the bulk of my care. It worked for a while but when we split up, ILF allowed me to remain fully supported at home.
This was the true beginning of my adult life. A rebirth, underpinned by my new understanding of disability activism, and my involvement in disability arts. ILF, through the care workers it paid for to match my needs and lifestyle, was a revelation. I had the same three people helping me wash and dress; the choice to change my mind in what I wore, what I ate, in when I got up – and the freedom to go to the toilet when I needed. It’s impossible to overstate the effect of this liberation.
ILF endorses independent living, not merely a feeding-watering approach, and has radicalised the support available. What it feels like now, as the closure looms, is that whether you work like me, or have defied expectations to stay in the community, you are being punished.
From day one I’ve wondered why the Tories decided to close the ILF, especially as the model works so well
Forget any consistency in the handover to local authority funding – my situation highlights the lack of uniformity. In the past 10 days my transition letter finally came: my local authority will cover my funding so I am “safe” until March 2016. But in the same week, friends on ILF have reported panicked assessments, confused social workers, serious cuts (one friend will lose 30% of his funding) and threats of being sent to live in care homes.
I’m angry with the government’s rhetoric, including the recent letter from Justin Tomlinson claiming Aditya Chakrabortty’s article about welfare cuts was full of inaccuracies about ILF. The government is constantly telling untruths and contradicting itself on this issue. ILF users know this – we are on the harsh end of the deception.
From day one I’ve wondered why the Tories decided to close the ILF, especially as the model works so well. I don’t believe it saves money. As my colleagues at Disabled People Against Cuts have noted, ILF funding averages £324 per week compared to an average of £3,500, for example, for the abuse-ridden care home Winterbourne View. And don’t believe, as the government repeats, that local authorities will manage things better; this is another lie. There is a postcode lottery in social care already and the ILF closure will make it far worse.
There is also a sickening hypocrisy. ILF has enabled me to sustain self-employment, giving me the 24/7 support to facilitate this in a way that means I can manage complex impairments – starting with appropriate personal care. But it’s hard to focus on longer-term creative projects when I have no idea what will happen next March. A friend feels the same: she wonders what is the point of getting a doctorate if she can’t take any job offers “because the care funding is crap”.
I’ve fought against the closure since its announcement in December 2012, at the high court, and blockading the Department for Work and Pensions on several occasions, including a tea party with my 78-year-old mother. I was too ill to join friends who occupied Westminster Abbey grounds, but when I can’t attend, I support them from social media.
If the government thought we were a soft target, I hope they now know better. I know I won’t stop protesting to make sure our right to independent living goes on – even if next year, it is a battle I fight from my pee-sodden bed. As for tomorrow, it’s Lost in Spaces, people who respect me, and another audience to get on the side of the ILF.
• Penny Pepper’s Lost in Spaces is at the Free Word Centre in London on 16 June