I remain creative and really pleased with my progress on many projects. But over the last month all efforts and actions have more or less been consigned to the bin of wasted effort.
I'm fighting Them. The faceless indifferent Them. It is horrible, undermining, and frightening to be in this battle. At this point They come in the form of ILF. Independent Living Funds. Some of you will know about ILF, many will not. In essence, ILF contribute to the costs, shared with my local authority, that enable me to employ Personal Assistants. This is called Direct Payments and many disabled people are on such a scheme. The key issues around Direct Payments are flexibility, choice and control in how 'care support' is given.
PAs enable me to have my basic functions attended to, but also to effectively live a life, to go from A to B to Z if I need to. PAs remove barriers by their faciliation of tasks I cannot physically perform. Let there be no misunderstanding: without a PA I do not take part in society or have a rounded full life. Forget being an artist, a creator, a story teller! A PA, under my direct supervision, actions the flow of my life, so that I CAN be that creative force.
Without warning, my ILF funding was suspended, and demands for mountains of paperwork were made to me. Instead of working and finishing my novel, instead of giving focus and attention to developing my property business, I have sat here for days, replicating information to send to ILF as if in some Kafka-esque nightmare. Information given to them already, also from my local authority, by my social worker, and their social worker. This pile will go to individuals who show no understanding of using PAs, or the intricacies of managing Direct Payments. I, on the other hand, have 15 years actual experience.
ILF is funded by the DWP and I have found out that ILFs budget was cut last year. All this nonsense is really about saving money, and as usual when there is an economic crises, disabled people are seen as an easy target from whom money can be withheld.
I hate saying we are powerless, but in some senses we are. Such a situation will not hit the national media easily, and this is because there is still a tendency to see us as being within the health sector and having no importance other than our statistical role within a welfare state. If equivalent funding cuts and approaches were made to individuals so unilaterally within education, or towards MPs and their pay packets perhaps, I am sure it would be across the press and beyond.
The reality is I work. I took the leap into self-employment, encouraged by New Deal and Working Tax Credits for disabled people. I came off Incapacity Benefit. I pay tax and national insurance contributions. The contradictions must be obvious. ILF, with their sudden action, risk putting me out of work. If I cannot pay for the assistance to get out of bed, what do they think will happen? The situation highlights not only the hypocritical views towards disabled people, but also the confusion and ambiguity. Who works? Who can work? How is it decided who can work?
I'm fighting ILF, of course. But it should not be necessary. I do have an impairment that affects my stamina, and should be conserving my energy to WORK happily on what I do well, with the creative skills and talents I am fortunate enough to possess.
Rest assured, this is not the end.