My Journey started in 1984 when my partner and main carer left after 20 years, although I gave Social Services 3 months notice three days before he went they phoned me to tell me they didn’t know what to do with me. As the end of our relationship was a complete shock to me I was left without any support and an emotional wreck.
Although my partner was a disabled man neither of us had been very political and the next 7 years gave me a tremendous shake-up when I realised that services we not in place for me or anyone else. At this time in my life I had never been left alone in the house overnight. My first experience with the home help services from the Local Authority was a wakeup call. When I asked her if she would get my bread out of the pantry her reply was “I’m only here to get you up”. In the evening I was subject to the district nurse who could arrive any time between 7pm and midnight consequently I had no social life. Then there was “the bath nurse” which fell on a Monday the result of which meant that every Bank Holiday resulted in no shower.
In 1987 –by which time I had joined many committees locally – as I had no transport – I was asked to accompany the Joint Strategy committee of the LA which took me to the Kings Fund which introduced me to Jane Campbell. She spoke about the Independent Living Fund and it was through this chance encounter I received fourteen hours in 1989. This meant that I was able to buy in a little social time – however this was soon reduced when one evening call from a district nurse left me feeling dehumanised and tearful, I was entertaining a couple of friends when the district nurse came. As she was taking rather along time to come in I went to the kitchen to see what she was up to. You can imagine my horror when I found her donning a plastic pinny and rubber gloves, asking her why she said cross contamination” to which I said “never knew cerebral palsy was contagious”! As a result of this i decided to use 7 hrs of my precious ILF to pay for support to get me into bed. It was about this time that I decided on having a hysterectomy as I did not have the support to keep clean.
During the following two years I decided I would challenge the Local Authority to swop their in-house homecare for cash. This took me 2.5 years lots of stress and angst and finally resulting in 35 disabled people getting an award called Independent Living Project or third party funding. As many of you will remember it was disabled people who fought and won this right.
From 1989 onwards as my impairment along with aging meant that I now have 24/7 care package funded by my LA and the Independent Living Fund which has enabled me to do the things I want to do and achieve. Just a brief overview of some of the things I have done – would include Chairing the UK Disability Forum for Europe, finding funding to instigate one of the first disabled women’s committees called edf women where we launched a website called edf.women.co.uk. This committee is now long gone but being Chair enabled me to meet many wonderful women and produce the Disabled Women’s Manifesto; you can take a look at this on the website. ILF gave me the opportunity to travel over Europe and Sth Africa to speak and join in conferences and hold workshops on independent living and violence against disabled women.
At this moment I employ six Personal Assistants 24/7 but like many of us I fear for our future. The closing of the ILF in 2010 has been a bitter blow to many people who would have been leading a fuller life. Unfortunately despite our efforts we are unsure how many this is. In 2010 the ILF was also threatened with closure – five of us decided to challenge the government decision we lost our first challenge but decided to appeal and won, however I feel the battle is far from over and 18,000 recipients feel they are living on a time bomb. This present government have decided to pick on the most vulnerable members of our society because they think we will back down. Let me leave you with this message – amongst us today we have some very strong women – on our own we are nothing together we can win.