Participants promoting their festival. Photo: Stephen CandyA few images here from an innovative digital arts festival due to take place this weekend (10-12 July). The interactive event, which I wrote about today for the Guardian’s online social care pages, will feature giant portraits of learning disabled people projected onto buildings, a game played with an accessible mapping app and an inclusive, high-tech design workshop to re-imagine a town centre.
Creating percussion sounds for the music element of the festival. Photo: Annalees Lim.Mixing music for the festival. Photo: Annalees Lim .SprungDigi crew member mixing SprungDigi theme song. Photo: Stephen Candy.
People with learning disabilities will help stage the innovative art installations and music and dance performances that they have created alongside digital and community arts practitioners. The inaugural SprungDigi Festival in Horsham, West Sussex, runs from Friday until Sunday.
The name of the free event reflects the concept that digital technology and online activity can be a springboard to social inclusion. The aim is to ensure that people with learning disabilities are more visible and feel more connected to their local areas. Read the rest of the piece here and check this festival page for more information about the weekend.
This weekend, I watched a film that should never have had to be made, about a young man who should never have died, featuring people who should never have experienced what they’ve been through.
If you follow this blog regularly, you’ve probably already seen the powerful film, The Tale of Laughing Boy, which was released on Saturday.
If you haven’t seen it then, for the reasons stressed in my opening lines, please spare 15 minutes to watch it.
Better still, watch, imagine and act, as the film’s concluding message urges its viewers.
The film is about the life of Connor Sparrowhawk (aka Laughing Boy). Connor, who had autism, a learning disability and epilepsy, was 18 when he died just over two years ago in Slade House, an assessment and treatment unit run by Southern Health NHS Foundation Trust.
He drowned in the bath on 4 July 2013, an entirely preventable death, as proved by an independent report demanded by his family. I covered the family’s experience here and if you don’t know his mother Sara Ryan’s blog, these extracts published in the Guardian reflect a little of what the family has been through.
Two years after Connor died, the family is still waiting for answers, a police investigation is ongoing and the outrage over his death has led to a powerful campaign, Justice for LB. It has also driven proposals for a new bill to boost the rights of people with learning disabilities and their families (see also this brilliant gallery featuring artwork created as part of the campaign).
The Tale of Laughing Boy should be required viewing for – well, for everyone, actually.
The issues it raises touch not just families of people with learning disabilities or people with learning disabilities themselves. The film is relevant not simply to professionals who work in health and social care or to politicians and policy makers who focus on these areas. In fact, Connor’s story begs the question of how society values (or rather, undervalues) people with learning disabilities and how we, as a collective bunch of human(e) beings, can (and should) positively respond.
The film, produced by self-advocacy charity My Life My Choice and Oxford Digital Media paints a warm, affectionate picture of Connor from childhood to young adulthood. Interviews, photographs and home movies celebrate Connor’s life as well as demanding answers about his death. It is a short, clear, accessible, arresting film – warm, beautiful, funny, and moving.
Connor’s family and friends speak with searing honesty about about the impact he made on their lives, and about the difficulty in his support (which is what triggered his admission into the unit). The teenager emerges as an engaging, entertaining, popular young character with a love of humour and a passion for music and buses.
Inspiring and amusing anecdotes show how much loved Connor was and is by his parents, siblings, grandparents, friends and support staff; one of his brothers recalls Connor’s claim that their mother was breaching his human rights by getting him to do the washing up.
Rich, Connor’s stepfather, describes the proposed new bill that the Justice for LB movement has sparked.
Rich explains that the objective is “to change the way in which the law works…At the moment local authorities and the NHS and other providers can pretty much put people where they want, what our bill proposes is that you simply will not be able to do that you will have to take full regard of the individual’s desire and wishes into account before making them a placement in residential accomodation…the bill tries to at least ensure or encourage that the knowledge, the love, the affection, the care, the experience that families have isn’t ignored by providers and is a full part of the process”
As Connor’s mother Sara says, it is “shameful” that there is a need to campaign “to give a certain set of people the same rights as everybody else”. Her son’s death, she adds, was terrible, wasteful, careless and preventable.
I wasn’t able to attend the launch of the film but Kate at My Life My Choice was kind enough to ask two of the contributors to the film, Tyrone and Shane, both of whom have learning disabilities, for their thoughts so I could add them to this post. Tyrone said: “Connor was a happy person – always talking about buses. I feel sorry that he died and wish it didn’t happen.” He also said that “taking part in the filming was fun.” Shane just wanted to reiterate “It’s terrible that this happened.”
In the film, it is another My Life My Care trustee, Tommy, who makes a powerful statement of the obvious; someone with epilepsy should never have been left alone in the bath. He says simply: “It’s not rocket science”.
Social inclusion: being “more busy” with people, places and projects is vital
“More busy”. This quote from Kelvin Burke of Rocket Artists reflects what people with learning disabilities need in order to be more included in society; people want to be busier with opportunities to do, make and see more things, to have more time to spend with people (incidentally, that’s people who hang out with you by choice and because they share your interests, not simply because they’re paid to support you).
Kelvin shared his words at a Tate Modern seminar on inclusive arts that I was involved in earlier this week. The event’s title – “a research discussion bringing together practitioners and academics to explore issues around inclusive arts practice” – doesn’t do it full justice.
This engaging, creative, interactive, collaborative and fun event (yes, fun! There was golden ink! Stickers! Sewing patterns! And cake – both drawn and real!) encouraged participants (academics as well as artists and performers with learning disabilities and without) to explore the barriers to social inclusion, within the context of the arts sector.
People on the table I chaired talked about what stopped them from being more involved in society as well as what needs to happen to change that.
Although these issues are something I’ve looked at before (see, this piece or an opinion piece here about the unequal treatment of learning disabled people), until Monday I’d not explored them with marker pens, golden ink, coloured stickers, gargantuan Post-it notes, A4 size speech bubbles and dressmaking patterns.
But there’s a first time for everything (and now I only ever want to write in golden ink).
More seriously, the method and materials were necessary if the discussion about access and inclusion was to be accessible and inclusive, so everyone had an equal opportunity to contribute thoughts, words, doodles and designs.
I can’t faithfully describe all the challenges and solutions identified in a room buzzing with the ideas of around 50 people, but a few ideas are captured in the images on this page. (unfortunately I wasn’t able to take a shot of the “Bolloxometer” designed, I believe, to slice through meaningless rhetoric purveyed by those in authority, but I’m first in the queue for this should it ever go into production).
Segment of a sewing pattern for a coat, decorated with hopes and solutions for the future for people with learning disabilitiesAnother segment of the coat pattern, reflecting how people with learning disabilities should be seen as people first, rather than being defined by their support needsOne idea to help celebrate differences…
Time was, however, a big theme for discussion. Those who work with people who have learning disabilities said they wanted more time for sustainable projects (rather than be caught in commissioners’ and grant-makers’ short-term funding cycles). People with learning disabilities said they wanted more time to do things they enjoy, as Kelvin said.
Words like “equality”, “access”, “value” and “listen” cropped up a lot. As did the importance of celebrating differences and valuing people for what they can do, not defining them by what they can’t. While the challenge of funding and cuts (both to social care and the arts sector) was a major concern, people were generally unwilling to focus on money alone as a problem or solution, when so much rests on changing the perception of people with learning disabilities.
Barriers to people with learning disabilities being included in society
Rocket Artists performed towards the end of the day, captured in this lovely shot shared on Twitter by Brighton arts organisation Phoenix:
— Phoenix Brighton (@PhoenixBrighton) June 1, 2015
The event also included the launch of a thought-provoking and beautifully produced new book, Inclusive Arts Practice. Authored by the University of Brighton’s Alice Fox (also artistic director of Rocket Artists) and Hannah Macpherson, it was created through interviews with and guidance from learning-disabled and non-learning-disabled artists. The book looks at inclusive arts – defined as “creative collaborations between leaning disabled and non-learning-disabled artists” – and its “socially transformative potential for collaborators and audiences”.
It addresses difficult questions, such as the differences between art therapy, occupational therapy and inclusive arts and clearly sets out the practical steps to create more collaborative art. The book acknowledges the fact that the term inclusive arts “presupposes exclusion” and asks how such collaborations between artists of different abilities can have real, cultural value (something I’ve blogged about before and which the Creative Minds project is exploring).
The book makes a persuasive case for everyone to have a cultural life in their communities; Southbank Centre director Jude Kelly, for example, comments in the book on how “we believe in cultural rights as a profound part of human rights”. Creative collaborations with the use of time, trust, skills and choice, are presented as “a force for societal good”:
“People with learning disabilities tend to be undervalued members of society, are much more likely to live in poverty, and are much more likely to suffer hate crime than their non-disabled counterparts. It is estimated that around 1.5 million people in the UK have a learning disability and over 3,000 of these people have spent over a year in an ‘assessment centre’, often a long way from family, and which is not designed to be a permanent residence. Many people with learning disabilities do not have access to any regular creative leisure activity outside their residential environment, despite the proven benefits of such activities for health, well-being and resilience…”
Inclusive arts can make audiences “feel differently about the people whose work they see and they can feel differently about themselves”, that is one powerful message in Inclusive Arts Practice.
Which is why the inclusive arts movement has an important place when it comes to equality for people with a learning disability. “We want greater powers to be seen, to vote, to be included, have the same opportunities in social life, education and employment as everyone else,” as campaigner Gary Bourlet says, or as the rights set out in the campaigning LB Bill show).
As for the sewing pattern that everyone contributed to on the day, one stylish spark made the beautiful observation that the final garment, emblazoned with words and images setting out some ways to break down social barriers, should have a sliver lining; the team from Brighton now plans to make the dream coat a real life action mac.
Anila Jolly and her older brother Sunil pictured recently
I’m so grateful to Anila Jolly (pictured above, with her brother Sunil) for speaking so frankly about her relationship with her sibling.
As she says, siblings of disabled adults are “largely invisible” to care providers, but their “insight and perspective can be valuable”.
There’s more on these issues in a piece on the Guardian’s social care network today; 1.7 million adults in the UK have grown up with a disabled brother or sister but campaigners say their support needs and caring role are overlooked.
My piece today focuses on the work of Sibs, the UK’s only charity for siblings of children and adults with a lifelong learning disability.
Sibs’ call for greater recognition for this comparatively invisible group is timely given the next tranche of welfare cuts, says its chief executive Monica McCaffrey – “people who don’t have critical or substantial need will have little or no support … siblings will have to ensure people are safe and we want them to have a voice within adult social care.”
In addition, the role of siblings should be seen in the context of Carers Week next week and the are growing calls for families to be fully involved in the care of disabled relatives (take the campaigning LB bill , for example).
You can read more here about siblings’ distinct role and how care providers and commissioners often underestimate their contribution.
Depictions of friendship, cityscapes and natural images are among the powerful photographs in an international arts competition reflecting the world from a disabled person’s perspective.
Photographers with Down’s syndrome from the UK, Greece, Japan, New Zealand and America have entered the Down’s Syndrome Association’s annual My Perspective competition which, this year, challenged people with the learning disability to go behind the lens.
As the association says: “In years gone by, people with Down’s syndrome were photographed as exhibits; the viewer was not supposed to see the person, just the difference. The Down’s syndrome Association’s My Perspective competition turns the camera around and gives people with Down’s syndrome the chance to show the world from their point of view.”
I’m sharing some of the 25 shortlisted images in the competition, which was launched in 2010, here (more can be seen here) and the winner will be announced on 11 June by a panel of judges including photographer Richard Bailey, curator of the groundbreaking Shifting Perspectives project.
The pictures reflect a beautifully wide range of subjects.
Ready for a ride, by Daniel HarrisonCoco by Kyle McKayBlue Body, by Rory DaviesThe Old Tree, by Emily Buck-The Park, by Takis KoumentakisSwimming with frogs, by Klay GreenCheeky Robin, by Steven PadmoreShadow Stories, by Lillie DaviesHello, by Takeo Niikura
Richard Ward has barely taken a day off sick since he started working 15 years ago. His friendly nature and keen eye for detail suit his role at a Boots store in Coventry, date-checking food, stacking shelves and helping customers find what they want. Ward, 33, says: “I like earning my own money, getting on well with the staff, seeing different people every day and it gets me out of the house.” Ward earns £600 a month, just over the national minimum wage.
Ward lives with his parents in Walsgrave, Coventry, and was referred to a local jobs support service by his special school; mainstream job agencies and government-run employment schemes would consider him unemployable. His mother Jane says he would be on benefits without the specialist job advice, coaching and long-term support from Coventry city council’s The Employment Support Service (TESS) for people with learning disabilities or mental health issues.
Learning disability is not on most politicians’ radars, despite people who have learning disabilities, or who have someone with a learning disability in their immediate family, making up 10% of the electorate. A recent poll of 100 MPs by social care provider Dimensions suggests 60% do not believe that learning disabled people can be supported into employment.
However, Ward’s job is under threat, along with those of another 100 people TESS currently supports to maintain employment and the 30 it helps annually into new jobs. The Labour-run council has earmarked the nationally acclaimed 22-year-old service for closure, a victim of public sector cuts. Its future after this December is unclear.
Coventry is not unique; supported employment is a Cinderella service, not a local government statutory requirement. A 2011 poll by the British Association for Supported Employment (BASE) of 50 of its members found half face council funding cuts of at least 15% and a quarter fear 50% to 100% cuts.
The situation in Coventry has sparked worries for families of younger disabled people elsewhere. They warn that supported employment cuts are at odds with special educational needs and disability reforms aimed at raising the aspirations of future generations.
In a joint comment Sherann Hillman co-chair of the National Network of Parent Carer Forums (NNPCF) and Sue North from Contact a Family said: “Parent carers of young people with disabilities and special educational needs say fear for their child’s future is one of their top concerns. This is because young people with special educational needs and disability are less likely to find employment and live independently – and face other additional barriers as they grow up. Any threats to provisions such as supported employment schemes, will inevitably compound these fears and worries.
People TESS supports spoke in its defence at a public meeting last week organised by local unions. Among them was Hayley Archer, who has a learning disability. Her mother, Suzanne, stresses the wider impact of supported employment must be recognised: “People like Hayley are changing society’s attitudes by having a role in the workplace and by working alongside people without learning disabilities.”
Archer herself, an administrative apprentice at the council, has a simple request for her future: “I really want to keep working.”
Robin Kitt Callender who died after missed opportunities to save her life (pic: Callender family)
By the time Robin Kitt Callender died, she had endured eight weeks of intermittent vomiting and diarrhoea, and her weight had fallen to five stone. In the four months before she collapsed at her Essex care home, the 53-year-old had visited her GP six times and A&E twice, but her inflammatory bowel disease remained undiagnosed.
Callender, who was severely autistic and partially sighted, with communication difficulties, died on 23 May 2012, less than 24 hours after finally being admitted to hospital.
An inquest last week concluded that she died from natural causes contributed to by neglect, with failings by her GP and hospital staff and missed opportunities to save her. Care home staff took her to the doctor, but failed to tell her sister (who usually accompanied her to medical appointments) of the severe symptoms until the day before she died.
There are 1,200 avoidable deaths of learning-disabled people in the NHS every year, according to Mencap’s research into “death by indifference”. A government-commissioned confidential inquiry into the premature deaths of people with a learning disability found that, on average, people die 16 years sooner than in the general population, with many deaths avoidable.
Among the families seeking answers and lobbying for change is that of Connor Sparrowhawk. Two years ago this month, the 18-year-old, who had a learning disability and epilepsy, was admitted to a specialist NHS inpatient unit in Oxford and drowned in the bath less than four months later. His preventable death led to the Justice for LB campaign and an inquest is due this summer.
The circumstances in the cases of Sparrowhawk and Callender are very different, but the principle is the same: people with a learning disability are dying because they do not receive the same quality of care as other people.
Beverley Lewis House is the only refuge in the UK that caters for women who have learning disabilities. Photograph: Beverley Lewis House
Barbara Davis’s abusive boyfriend burned her fingers on the stove when he discovered her packed suitcase under the bed and realised she was trying to leave. He had controlled Davis, 36, who has a mild learning disability, for years. He isolated her from family and friends, verbally abusing her parents until they stopped visiting. He locked her in the privately rented London flat they shared, goading her to kill herself. She recalls: “He told me to strangle myself with a wire … he wanted me to die.”
Davis (who eventually escaped) told her story to researchers from the Tizard Centre as part of a project to explores the experiences women with learning disabilities who suffer domestic violence. The work, which also looks at the attitudes and practices of professionals who support such women, is featured in my Guardian piece.
There are some shocking – although perhaps not surprising (given the low profile of learning disability as an issue) – facts included in the piece. Among them, that the UK has just one specialist domestic violence refuge for women with learning disabilities. What’s more, most police officers (often the first point of contact in a domestic abuse incident) do not believe that a learning disability makes women more vulnerable to domestic violence.
Powerful and rarely seen archive images of life in institutional care form part of a new exhibition that opens today.
The history of long-stay hospitals in Wales is the focus of Mencap Cymru’s Hidden Now Heard project that documents life for people with learning disabilities in the region.
The striking shots of the long-since closed institutions include rarely seen images of Hensol Hospital, Vale of Glamorgan, taken by renowned photographer Jürgen Schadeberg in 1967.
Schadeberg’s Welsh photographs range from the surprising to the thought-provoking and the unsettling. They focus on individual faces and personalities at a time when people with learning disabilities were invisible, herded into high-walled hospitals, hidden away for years.
The images hint at stark reality of life in long-term care, reflecting some of the isolation and inactivity that were its hallmarks. They show patients in workshops and in and around the hospital grounds. However, the photographs also depict some of the positive bonds between staff and children in their care.
Hensol opened in 1930 as a “colony” for the care of 100 male “mental defectives” (standard terminology at the time) with buildings added to raise numbers 460 male, female and child patients in 1935. The move towards community care meant that patient numbers eventually reduced and the institution closed in 2003. Some of the buildings are now luxury flats.
The project provokes the public to consider how we care for and treat people with learning disabilities today.
The exhibition, which runs until March at Swansea Museum, is based on oral history testimonies from people who lived in hospitals, their relatives and staff, and is run by and funded by the Heritage Lottery. All the stories from across the region will eventually be deposited in the archive at St Fagan’s, the Museum of Welsh Life.
Phyllis Jones, a patient at Hensol for over 40 years, said of her involvement in the project: “I wanted to tell everyone about Hensol, the good times and bad. They had good staff there but overall I didn’t like living there. I prefer living in my own house”.
Mencap Cymru, which has was involved in helping close many of the area’s hospitals, spent three years researching the project. It wants to record and acknowledge the stories and experiences of former patients and offer people a chance to talk about the past.
Mencap Cymru director Wayne Crocker said of the exhibition: “I very much hope that those who visit will be impressed by the stories they see but more importantly will see the amazing contributions people with a learning disability make to our communities in Wales.”
Anyone recognising the people in the photos or who have stories to tell should contact Mencap Cymru.
You can find out more on Twitter @hiddennowheard or visit the Facebook page.
Back home, a song by Tianze Ni. Tianze, who has autism, lives in a specialist unit 200 miles away from his family (image credit: Nina Ni).
The handwritten song above (typed transcript below) is by Tianze Ni, 17. For the last six months Tianze has lived in a hospital unit in Middlesborough, 200 miles away from his family in Fife, Scotland.
Tianze is desperate to be home. His parents are desperate to have him back. The local council that has placed him in the unit says there is nowhere appropriate for his needs nearby.
I mentioned Tianze’s case in a piece for the Guardian recently on the 2,600 people with learning disabilities stuck in specialist institutions miles from home (you can read more in this post too).
A report commissioned by NHS England attempts to find solutions to the problem. In addition there is a growing grassroots campaign for new legislation – the disabled people (community inclusion) bill 2015, also known as the LB bill) to prevent people from being sent to these places in the first place.
Tianze Ni, who is living at a specialist hospital unit. pictured during a previous Christmas with his mother NIna (photo: Nina Ni).
Tianze’s mother, Nina, describes the “inhuman treatment” of keeping Tianze away from home. “We are suffering day and night,” she says.
She is not alone. Leo Andrade-Martinez, for example, whose son Stephen, is also miles from home in a similar unit: “No one should suffer like this”.
The stark words of families and of people with learning disabilities are more powerful than anything I can write here.
Here are Tianze’s words; they need to be read and shared widely:
Miss home, back home, by Tianze Ni
Back home,
Back home,
Back home,
I miss home,
I dream home,
I miss mum,
I miss Dad,
My home is in Scotland…..
I miss home
I dream home.
I miss home food
I miss home family together,
I count days to back home …..
Back home,
Back home,
Back home.
* See also Tianze’s petition on Change.org, and Stephen’s.
* See here for information on the “LB Bill“, a draft private members bill that aims to boost the rights of people with learning disabilities so health or social care authorities will find it harder to transfer people to assessment and treatment units miles from home.
