On 13th December 2010 I wrote a post entitled ‘Not Much Choice’. In light of what I’m about to describe, that title now seems eerily prescient.
In the post I gave a brief description of a conversation with a man in a pub. He thought I was lucky to have Tourettes because it meant I could say whatever I liked. I pointed out it actually meant the opposite and that I say lots of things I don’t choose to. I wrote, ‘It’s ‘not lucky or unlucky – it’s just how it is.’ Even though my tics have intensified dramatically since then I still don’t feel hard done by. But I do feel sad and unlucky to be living at a time when hard-won support for disabled people is being systematically dismantled.
What I didn’t know when I wrote my post that December evening back in 2010 was that earlier on the same day an announcement had been made that would greatly restrict my future choices and those of many other disabled people living in the UK. The announcement was that the Independent Living Fund (ILF) was being closed to new applicants. In October last year the Government took the final step, announcing that the Fund would close completely, even to existing beneficiaries in 2015.
The ILF was established in 1988 to enable severely disabled people to live more independently. Funding additional support-worker hours, it allowed thousands of disabled people to live in their communities rather than in residential care.
I wouldn’t have been eligible for support from the ILF at the time its closure was announced. But I might well be now, if it were still accepting applications.
My reduced mobility and ‘ticcing fits’ mean that to be truly safe and independent I need someone with me all the time. The reality is, despite the personal budget provided by my social care team and the support I have at work funded by Access to Work, I still need to negotiate support (or manage without it) for an additional 45 hours every single week.
I realised the other day that the time when I feel most independent is when I’m at work. It’s no coincidence that this is where I have constant and consistent support. At home the situation’s become noticeably harder since my flatmate Poppy moved out two weeks ago.
At the moment, rather than look forward to weekends, I find myself panicking towards the end of each week as I struggle to make arrangements for reliable unpaid support, which mainly has to be from friends who live nearby and are willing to be on call. But this arrangement isn’t reliably safe, as the incident the other week demonstrated, nor does it give me choice or control over what I can do.
These issues were thrown into sharp focus yesterday after a brief conversation with Leftwing Idiot. He’s my main carer and meets the majority of my shortfall in hours. He does this out of friendship, necessity and because he cares.
He’s been given an opportunity to go away for a whole month in the summer, but he’s not yet decided whether to take this up. I’m ashamed to say I found it hard to listen to him talking about it. Rather than feel happy and excited for him, I felt the grip of fear. The thought of how hard it would be for me to manage without his help made it hard for me to discuss it with him objectively. This in turn made me feel horribly selfish.
If Leftwing Idiot does choose to go away I know there’ll be a way to make it work – there always is. But having thought about it more deeply, I realise my reaction doesn’t reflect badly on my character, but it does reveal a bigger problem. I don’t really have the support I need to live a safe, full and independent life. And should my wellbeing and quality of life be dependent on the kindness of my friends?
Justine, who shared her story on the Disabled People Against Cuts website, summed up the problem very well when she said, ‘The basic care given by the local authority is to maintain your primary needs to survive (washing, dressing and eating). But life is so much more than that.’
This was the gap that the ILF filled. It’s a gap I’m often very conscious of when I have to sit on my bed during my spare time, when I wake up from nightmares about living in residential care, when I put off taking annual leave so I don’t have to face finding support, when I watch guiltily as my friends make sacrifices for me, and when I try not to burst with frustration when I can’t do the things I’d like to.
The Government says local authorities will take over the responsibility for supporting people who were or would’ve been supported by the ILF. But the idea that councils will be able to finance these complex care packages in a climate of relentless cuts seems ridiculous. Current ILF recipients know this and a group of ten are taking the Government to the High Court next month to challenge the consultation on the ILF closure.
I know it already costs a lot to keep me safe, working, and living in my community, but the alternative is injury, unemployment, frequent trips to hospital and living in an institution. It’s worth remembering that I don’t just consume resources. The support I get means I’m an employer, an employee, a taxpayer, and fully involved in my community.
At the moment my wellbeing’s very dependent on one or two people and this doesn’t seem fair on them or me. I’m fortunate to have incredible friends but surely the wellbeing of disabled people needs to depend on more than just good luck.
It’s not my disability that stops me being independent and in control of my life, it’s a lack of resources and support.
Please help defend the ILF by emailing your MP using this template, or if you live in London by joining this vigil on 13th March supporting those taking legal action in the high court. The closure of the ILF doesn’t just affect the 19,373 people who’ve benefitted from it. It must surely be an issue for anyone who believes in equal opportunities and human rights.