‘Seven decades later people still languish in the corners of our community exiled in our own land, still not free with lives crippled by the manacles of segregation’ Gary Bourlet
Suzie Fothergill (co-chair of Skills for Care) opening the conference with Gary Bourlet (People First England founder and co-chair) was one of those “forgotten people” in Prudoe hospital. Her poem introducing the book No Going Back – Forgotten Voices from Prudoe Hospital says all too clearly the pain experienced, as do her and others’ stories in the book.
“Institutions stink
They make you want to puke
Doctors think they’re it
And they’ll read you like a book”
“I was kicked around and used,
Insulted and abused;
They messed with my mind right from the start,
Treated me like a dirty tart”
but ends with her “second life” as a parent, “So now I’ll tell you”
“I’ve got a voice
I’ve got a right to make a choice
I’m not a toy for you to abuse
I’m a woman of spirit and now I’ll refuse…
To take that abuse any more”
Suzie said we all have challenging behaviour but people get lost put behind barred windows. In contributing to the book, she said at first some people were frightened to talk about it, but by getting together and relaxing , ‘we were able to get it off our chests and into our book’. Lessons must be learnt ‘to teach our children that we’re all the same’ – it’s just ‘some don’t walk or hear the same’, but everyone needs a life and to be involved.
Gary’s powerful campaigning speech set the tenor for the conference. The ‘No Going Back’ theme highlighted the frail progress made since Prudoe and other long-stay hospitals closed, given the shocking revelations across the recent past such as Winterbourne View and Connor Sparrowhawk’s death. Housing and Support Alliance (H&SA) have committed to this theme, representing Providers on the new Learning Disability Alliance (LDA) which launched the following day in Manchester – a strong alliance of people with learning disabilities, families, and providers ,hosted by the Campaign for a Fair Society (England).
Gary reminded us how recently our welfare state was formed, despite the then crippling post-war debt. It was ‘a beacon of hope in a state battered and bruised by the ravages by war’, but it still took another 25 yrs before disabled people took the ‘long road to freedom’. However, ‘seven decades later people still languish in the corners of our community exiled in our own land, still not free, with lives crippled by the manacles of segregation’, he said.
He said disabled people would never be satisfied as long as their rights are under threat and they remember….the ‘torture in Winterbourne View carried out by those paid to care; the unspeakable horrors perpetrated on people by services; Connor Sparrowhawk, left alone to drown in the bath in an NHS hospital; Stephen Neary ripped away from his life and the family he loved’.
People are people first with hopes and dreams, who can all learn, grow and play together, he said, but people with learning disabilities needed to get the right to be free, to have their differences and talents embraced and to have the dreams others have. His demands were for equal access to transport, leisure, places and for ‘our children’ not to be segregated, and denied appropriate opportunities. ‘Only when all adults see a world of ability not disability, with the right to have basic needs met, will we start to believe’.
He spoke of a new power emerging in the disability community which included people outside it. ‘As we travel, we will travel together – led by those with disabilities and supported by those who are paid to provide’.’ It’s about choices, and the voices of disabled people, made with families, supporters and carers but always with disabled people at the heart of their lives.’
Judith North (Orenda consultancy) and Katherine Simmons, a mum, whilst supporting ‘no going back‘, wondered whether we are now seeing “modern day institutions” in the community. Katherine reminded delegates of Irving Goffman’s definition of the total institution as a place where people spend all their time sleeping, working, playing; tightly scheduled, with rules enforced by a group of officials from whose judgement there’s no escape, surrounded by narrow stereotypes and where plans belong to staff, not the person. ..
Kyle had been a typically fit, healthy, intelligent and active twelve year old boy who suffered a massive brain haemorrhage in 2009. Defying the odds, he survived, but had lost everything that we take for granted like walking, talking, eating etc. Without any rehabilitation facility for children under 16 anywhere in Wales, the nearest in England being 160 miles away, until she met Judith in 2011, Katherine walked the ‘corridors of “he may not..” ‘.
Kyle now lives with mum, goes to school supported by 2 staff with a 24 hours service. However, despite their best efforts, it’s not made things better. 25 organisations are involved who’ve all had ‘a little piece of our lives’…. with a ‘massive lack of coordination’ between them. What’s worked has been the incredible circle of support, the loyal, handpicked support, 3000 followers on their social network, a lead therapist and help in a way which actually helps. Not working is the bureaucracy, communication, relationships, reporting and fighting, being taken over by ‘the crushing weight’ of organisational systems and procedures (‘used to excuse errors or omissions’) and a service design ‘that noone reads’. The constant surveillance over the family’s lives and lifestyles, creates a strain and stress undermining wellbeing and eroding identity.
A few years ago, they started Kyle’s goal to fund-raise for the legal costs that got the support he needed. They are now fund-raising for a local facility – a hub – and for a service with the skills/service support needed. It has no state support, but they have a design for a building which young people want to be in, but designed for its purpose.
So for Katherine, ‘modern day institutions’ are services which encompass their whole life and are inescapable. What Kyle’s journey teaches is that what’s needed for Kyle and those who love and care about him, is to be part of an holistic, person centred and positive endeavour to maximise his potential. Who wouldn’t want that for their child? http://www.kylesgoal.org.uk/
Out there in the services, Tom Noon (Chief Executive Cordis Bright) presented the worrying picture, as he looked ahead. He felt that as the cuts bite ‘you won’t be able to rely on the state’ unless you have very complex needs. He saw housing is the single biggest obstacle, along with the inconsistency of what you can expect from Local Authorities with very different funding positions and ways to manage the cuts, and differently committed to moving people out of residential care and newer service models. His six big challenges to rights and greater independence were money, commissioning behaviours, the workforce, the population and fragmentation.
He suggested that people will need to decide what they’ll compromise and what they’ll campaign for. He suggested compromises might be around security of tenure, density of population, pay levels for people providing support, levels of support, families’ financial contributions and acceptable levels of risk, whilst campaigns might concentrate on getting social housing, the living wage and the rights of people with learning disability.
Andrea Pope North (joint chair ADASS learning disability network) said ‘We know what works – the answers are really very simple. Getting there has proven really really hard’. She wanted to see honesty and sharing of ideas about how to break down the barriers and a real engagement of all key stake-holders in solutions and decisions. She said it’s not an adult only issue – it’s all ages, and artificial age barriers need removing. Community-based services underpinned by Positive Behaviour Management skills and integrated joined up care do work, and individual success stories should be shared. The money MUST follow the person she believed across health and social care in a timely and safe way. Assessment and treatment beds must reduce, with effective crisis support where people live. Workforce issues must be addressed alongside using the rights-based approach coming out of Sir Stephen Bubb’s work.
The energy to ensure people get supported in their communities with real rights came from all directions on the day. There were workshops from providers showing how innovation is happening and ideas being generated, as well as dramatic reminders of individuals’ more negative experiences.
Change’s conference “Our voices our choices our freedom”, whose report from people with learning disabilities has shaped and informed the government report, was highlighted as one of the most exciting developments this last year by Neil Crowther (Independent equality and human rights consultant) on the Panel. He talked of the opportunity for people with learning disabilities to pay more active parts – peer to peer and self advocacy, but also on employing people with learning disabilities to deliver services. Shaun Webster (Change trainer/consultant) “When I take my power, my co-worker is free to take theirs” Neil reminded delegates that whilst there has been European concern about Bulgaria for example where people have been isolated, deprived of their liberty, and had inhuman and degrading treatment, this has been found far from unusual in the UK. Andrea Pope North (ADASS) saw councils driven by Central Government cuts, running out of “magic tricks” but still with the ‘energy and heart’ to look for ideas about how to make services work for local people. There was no lack of challenge from the delegates to the Panel. One parent/carer had been through “11 months of hell” ending up an emotional wreck from the tussles, and accused some on the panel and politicians of ‘living in a dream world’;. Other issues included the need for professionals to learn how to co-work; closing services without “opening up the world” to include people; the need to generate relationships and networks – the big killer being loneliness and isolation; the incompetent work capability system & high cost of some in prison; and why don’t we see adults with learning disabilities working in UK schools.
(see http://www.housingandsupport.org.uk/hsa-annual-conference-2014 for reports)
