Rescare has been part of our family’s lives for over thirty years, and so it is with sadness and pride that I write this. Doctors hid the fact that my baby daughter had Downs Syndrome from me for five days, and the midwives were banned from telling me the truth. So when on the fifth morning the doctor arrived at 9am with six medical students to break the news, he said, “I’m sorry to say that your baby has Downs, and no matter what therapies you do, it will not make much difference.” I was alone in the woods with my 7-year-old son in the Wye Valley, because Isabel’s father was working abroad. So you can imagine my joy when my GP drove all the way down from Abergavenney to advise me to seek a Camphill residential school for Isabel. I thought it would be easy.
Not so. But fast forward a few years and I approached the Camphill Sheiling School in Ringwood, who then put me in touch with founding Rescare trustee Mary Pearson. I started to subscribe to Resnews and enjoyed the feisty articles questioning the “normalisation” regime, the “social model of disability,” and dodgy “care in the community.” Mary advised me well and I found an educational psychologist to recommend the Steiner type of education for Isabel when I began my battle with Bristol City Council. I’d moved here because of the refusal of Gwent to even contemplate Camphill. But Bristol insisted that foster care “with a family” was far superior to what they said was an “institution,” despite the fact that the live-in co-worker model in Ringwood enjoyed an extended family model of care. During this time I would call Stockport and speak to our late chair Richard Jackson, who, in his booming voice, was always at the end of the phone with good advice.
Isabel’s doctors were proven wrong about how much certain therapies and settings could help Isabel. After a torturous route, she was finally made a Looked-After Child, which allowed social services to pay two-thirds of the school fees in Ringwood, and she and our family enjoyed some of the best ten years of her life.
She won national prizes for her artwork and was one of the first people to draw speech from her roommate with autism. I then became a trustee for Camphill Families and Friends, and was later hired by the Camphill Village Trust (CVT) to set up their first press office, long overdue.
Sadly, the prejudice of the authorities, including the CQC, against village communities like Camphill, coupled with a hostile managerial takeover of the CVT, led to the vicious battle in which the live-in co-workers were driven out of their communities. Villagers lost the families who had shared their lives for decades.
I am proud of the role which Rescare played during the battle to save Botton Village co-worker leaders, including David and Marie-Reine Adams and others. We provided legal and moral support, and helped to get Action for Botton an excellent PR, Kay Clark, from Bristol, to place exposes in Private Eye. I helped the BBC to produce an extended news item, where the takeover managers prevented them from filming on site, thus winning sympathy nationwide for the co-workers and residents. Eventually the CVT, fearful of the bad publicity, were brought to the negotiating table. And the result of that was that today a new Camphill, with a number of former Botton co-workers and their families, occupies a number of houses on the Botton site. Based on the Shared Lives model, of three residents per house, the Esk Valley Camphill Community is thriving. They bought the local health food store, a new house and now run a market garden.
They recently organised an ambitious Community Earth Festival, with over 200 people attending, including the local mayor, choirs, clog dancers, poets, Steiner eurythmists. This led to a workshop on how the community can restore biodiversity and resilience to the Esk Valley. As co-worker, Mark Barber, concluded in his article describing the event: “However, in the Camphill movement we are well acquainted with the creative, healing power of community. When a group of people begin to identify with each other, to root themselves in a landscape, to reckon wit the forces that shape it, and to assert a claim to a common future, then we are dealing with power bigger than all of us.”
Community. We families of the learning disabled are a community, and we often speak the same language, face the same obstacles. We help each other. Which brings me to the present day evolution of Rescare. After four decades, like many other small charities, we are facing new challenges with a falling, elderly membership.
Despite turnaround over the past five years, with the invaluable addition of trustee Dr. Katie Booth, we have started fundraising and expanded our services. Most importantly, we have finally returned to the lobbying, fighting roots of our early Rescare years, by helping to set up Our Life Our Choice.
First, Maurice Collins contacted us, from the Ravenswood families fighting against the closure of that village community, and shortly afterwards our new trustee, Antonia Field, from the Save Furlong Close campaign, got in touch. And from there, one of the architects of the family buyout of HFT’s Stanley Grange, David Wilks, joined our Zoom calls. He, too, is now a Rescare trustee. We have had various meetings with the CQC to challenge their ban on setting up any new village communities. Not only did the eminent Dr. Hilary Cass, former President of the Royal College of Paediatrics, join our meeting with the CQC. Our Life Our Choice’s Paul Collins has just produced a devastating critique of the flawed conclusions of the research which the CQC has based its anti-choice agenda. Our Life Our Choice estimates that we have lost over 40% of residential homes for the learning disabled. Just this week a family member from Walberton advised Antonia Field that 22 Leonard Cheshire Homes are now facing closure.
There is a desperate need for families and society to fight these closures and open the way for new forms of communities to flourish. And so now that Rescare has helped to set up a much wider coalition of family lobby groups, we can feel happy, and celebrate the evolution of our work into Our Lives Our Choice.
In closing, I want to thank all of our members, donors, trustees, past and present, our tireless Helpline stalwart of fifteen years, James Reid, Molly Turner on looking after the Our Life Choice Campaign and Nicola Zielinski-Gray, without whom we would not have succeeded in continuing our Rescare legacy into the future.
Thank you so very much for supporting me as Chair for these past eleven years. I look forward to working with you all through Our Lives Our Choice for the next years ahead.