Anne’s ILF story
My partner of 20 years left me in 1984. I am ashamed to say that until this time I knew nothing about disability rights let alone Disabled Peoples User Led Organisations. When I informed my social services department they hadn’t a clue as to how they were going to support me.
From 1984 until 1988 was four years of hell, never knowing who was going to get me up in the morning, put me to bed and all the other bits in between. I joined a Local Authority Strategy group with whom I visited a conference in London. It was there I met Jane Campbell who introduced me to the ILF.
To begin with I had only 14 hours ILF funding which in the early days I used to do some social things and join a local DPULO becoming chair after six months. However I was still having home care, districts nurses to put me to bed and a bath nurse once a week except on Bank Holidays when I could miss a bath for three weeks. During this period of my life I was forced into having a hysterectomy because with the limited amount of support I received I was unable to keep myself clean. One evening whilst entertaining two friends the nurse arrived and donned a plastic piny and gloves to undress me. Seemingly cerebral palsy had become contagious, this is when I decided to use some of my precious ILF funding to support me to go to bed.
As the years went on and my impairment grew worse I eventually got 24/7 funding half of which is paid for by the ILF. This package has enabled me to run local, national and European DPULO’s. The latter gave me the opportunity to travel all over Europe supporting people to fight for their rights to independent living. During the 28 years I have been part of many nongovernmental organisations, fed into countless government “think tanks” etc none of which would have been possible without the ILF because Local Authorities will or can only support basic care needs.
When you read my story you may think what a drain I have been on society but let me remind you that I keep six Personal Assistants in work, pay employers National Insurance, contribute both economically and mentally to society, run a web based organisation for disabled people who employ their own PAs, carers or support workers – none of which I could do without the support of ILF.