Category Archives: Young people

In limbo: life for people with learning disabilities moving out of hospital units

Today's Guardian article
Today’s Guardian article

The government promised four years ago to move people from treatment and assessment units following BBC Panorama’s exposure of abuse at the privately run Winterbourne View.

The preventable death of 18-year-old Connor Sparrowhawk, who drowned in a Southern Health trust unit in Oxfordshire three years ago, and the subsequent Justice for LB campaign, further fuelled demands for action and accountability over the treatment of learning disabled people. In October, NHS England and council leaders set out a £45m plan to close England’s last NHS hospital for people with learning disabilities, plus up to half the 2,600 beds in the units.

But according to the latest figures, in June more than 2,500 people were still languishing in such units as the pace of change is so slow.

My piece in the Guardian today focuses on what happens to people as they are moved out of these secure hospital facilities and back “home” – “into the community”.

Some, like Ben Davis, who has autism and complex needs, are passed from pillar to post as suitable local support just doesn’t exist. Family-led research published today by charities Bringing Us Together and Respond highlights the problems for people like Ben.

Ben was admitted to an assessment and treatment unit (ATU) miles from his home after his first supported living placement broke down. After the ATU, he moved to a newly built flat nearer his family but that support has now also broken down. He has to move again, into temporary accommodation, while care commissioners organise the next option.

When I interviewed Ben’s mother, Catherine, she was both eloquent and outspoken as she described how the human rights of her son were being eroded after he was repeatedly failed by the very system designed to support him.

This is where we are today. Upwards of 2,500 people stuck in inappropriate, discredited care, and the strong will to get them out is being undermined by the lack of a clear way.

And meanwhile, many parents – every single one of whom has spent years relentlessly fighting for the right support – feel they cannot always openly challenge the authorities, such is the fragile and often hostile relationship between families and commissioners of care.

* Names and details in the article have been changed

* Read the full Guardian piece here and the check this for reports by Bringing Us Together and Respond on which the article is based

Arts festival offers a focus on equal opportunities for disabled young musicians

Performers from integrated circus company Extraordinary Bodies will be at the Fast Forward Festival next week. The event will highlight arts accessibility and, hope campaigners, boost calls for a new centre for training for disabled young musicians.
Integrated circus company Extraordinary Bodies performs at the Fast Forward Festival next week. The event will highlight arts accessibility (pic credit: Rachel Lambert).

Across the country, there are a dozen government-funded centres for advanced training, providing specialist education for young musicians. But there is no such equivalent for their young disabled counterparts.

However, it is hoped that an arts festival, which opens next Friday, will strengthen a campaign for the first ever such facility for musicians with special education needs and disabilities.

Next week, Colston Hall in Bristol will be home to the second Fast Forward Festival, which champions accessible music making and arts. Performances include those from the Paraorchestra, the world’s first professional ensemble of disabled musicians, founded by conductor Charles Hazlewood in 2012. Integrated circus company Extraordinary Bodies is another headliner.

Extraordinary Bodies performance of Weighting Photo credit: Richard Davenport
Extraordinary Bodies performance of Weighting Photo credit: Richard Davenport

The return of the festival, which was launched last year, reflects the venue’s aim to champion arts accessibility and to contribute to a shift in perceptions of disability. As part of next week’s event, Colston Hall, run by Bristol Music Trust, is holding an exhibition involving the One Handed Musical Instrument Trust (the trust’s aim is to remove the barriers to music-making faced by disabled people).

Ruth Gould, artistic director of Liverpool based disability arts organisation DaDaFest, summed up the situation when I interviewed her recently, highlighting how negative assumptions about disability linger on in popular culture (“Lack of training, lack of educational opportunities, lack of work, lack of media and arts representation, demise of independent support, cuts in mobility allowance and personal assistance”.)

Colston Hall, run by independent charity Bristol Music Trust, wants to be home to the UK’s first centre for advanced training for disabled young musicians, both to encourage more opportunities for them to get qualifications and pursue a career in music, or just to be able to enjoy music. The aim of the campaign for a new centre, launched at the House of Commons earlier this year, is for the centre to train 2,500 young people from across England, and set a national benchmark for music accessibility.

Musicians at Colston Hall, Bristol
Musicians at Colston Hall, Bristol

The centre would form part of a £45m revamp of Colston Hall – Bristol council, the government and Arts Council have committed a total £25m so far – with new classrooms, state-of-the-art technology lab. The technology would include cutting edge instruments, such as those played by the flicker of an eye, or software that uses facial movements to control music.

Bristol Music Trust currently trains young disabled and special needs musicians, but the redevelopment would add new classrooms and a state-of-the-art technology lab will set new national accessibility standards. The venue, currently not accessible to disabled people, is due to close next summer for redevelopment; the plan is for it to reopen in 2019, fully accessible and home to the UK’s first specialist centre for the training of young disabled musicians.

Young pianist Ashleigh Turley at the launch of a campaign to create a new training centre for talented young musicians with disabilities
Young pianist Ashleigh Turley at the launch of a campaign to create a new training centre for talented young musicians with disabilities

The area is already home to the South-West Open Youth Orchestra which is the UK’s only disabled-led regional youth orchestra. The Paraorchestra also recently relocated to Bristol. The addition of a centre for advanced training at Colson Hall, supporters hope, would turn the region into a beacon for accessibility and equal opportunity.

* On the same topic of accessible arts, integration and young people, I recently came across an innovative music project that aims to raise awareness about visual impairment and sight loss. Musician Marie Naffah, a 23-year-old singer/songwriter, was inspired to explore blindness after her grandmother developed age-related macular degeneration. Marie wrote, recorded and performed a song while blindfolded and then collaborated with a group of six blind and visually impaired musicians to record the track, ‘Blindfold‘. Disability is not an obstacle to creativity or talent, as Marie says in a TEDx Talk at the Courtauld Institute that went live this week.

How ballet can break down barriers

An inclusive ballet session at  ballet school Flamingo Chicks (photo: Flamingo Chicks)
An inclusive ballet session at ballet school Flamingo Chicks (photo: Flamingo Chicks)

A Bristol-based dance project is spreading its inclusive arts campaign, training teachers to run ballet sessions for disabled children and their non-disabled counterparts.

UK-based Flamingo Chicks dance school ran pilot sessions in Ghana earlier this month (photo: Flamingo Chicks)
UK-based Flamingo Chicks dance school ran pilot sessions in Ghana earlier this month (photo: Flamingo Chicks)

My piece on the Flamingo Chicks dance school, which launched two years ago as a community interest company, is on the Guardian site today. Its weekly classes in Bristol, Leeds, York and London reach 1200 three to 19-year-olds with or without disabilities, and those with illnesses such as cancer. Classes offer access to mainstream dance activity (often, such classes are segregated), develop confidence, social skills, co-ordination, communication and concentration.

Now, the sessions are launching in Ghana – dubbed “the worst place in the world to be disabled” – sessions reaching 200 children and training 10 teachers to put on classes. Founder Katie Sparkes has contacts in Africa thanks to her work supporting charities with corporate social responsibility.

UK-based Flamingo Chicks dance school ran pilot sessions in Ghana earlier this month (photo: Flamingo Chicks)
A pilot dance session in Ghana (photo: Flamingo Chicks)

Sparkes says of the work in Ghana earlier this month: “We did lots of workshops with children aged two to 25 and also did a teachers’ training session where teachers and childcare workers from a variety of schools and orgs attended. We left them with lesson plans, equipment and a host of ideas. We’ve also set up an online ‘Global Chicks’ group where we can provide on-going outreach support. Any questions, ideas or motivation they need, our teachers will respond and coach them, also providing video tips or tutorials.”

Ballet, with its discipline and formal image, might not seem an obviously accessible art form, but Sparkes says it can improve body awareness, muscle strength and core stability. Its storytelling aspects and focus on character are also accessible.

Dance school Flamingo Chicks runs inclusive ballet classes for children of all abilities.
Dance school Flamingo Chicks runs inclusive ballet classes for children of all abilities.

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The school has eight teachers who focus on trips and performances as goals and benchmarks, instead of exams. The 45-minute or hour-long sessions include drama, dance and yoga using sensory equipment like feathers, dance ribbons, scarves and flashcards for deaf children, or hula-hoops to teach arm movements to a blind child. The relaxed atmosphere means children may wander around or makes noises without fear of flouting any rules.

There are an estimated 770,000 children with disabilities in the UK. Three quarters of families with disabled children feel so isolated that it has caused anxiety, depression and breakdown, according to charity Contact A Family. Four in ten (38%) parents of disabled children say their child ‘rarely’ or ‘never’ have the opportunity to socialise with children who aren’t disabled, according to a 2014 Mumsnet and Scope survey.

The full piece is on the Guardian’s social care network.

How English councils are supporting unaccompanied child asylum seekers

Ports of entry like Kent and Croydon look after a disproportionate number of child asylum seekers, and government funding doesn’t cover all the costs, as I explain in a piece on the Guardian’s social care pages.

Many concerns were raised at the National Children’s and Adults Services Conference in Bournemouth in October, and are reflected in recent research from Brighton University. This describes “an extremely uneven distribution” of unaccompanied minors. A Freedom of Information request reveals that seven out of 150 English councils look after 43% of all unaccompanied asylum-seeking children.

In Kent, there are 1,384 unaccompanied asylum-seeking young people, including 982 under-18s; more than a third of all looked-after children.

Peter Oakford, cabinet member for specialist children’s services says: “It’s been the most difficult year Kent county council has ever experienced regarding unaccompanied asylum seeking children … This places enormous pressures on staff in services within the council, foster carers and education services as well as all our partner agencies like the police and health.”

Amid the debate about dispersal schemes and funding shortfalls, Kent’s latest figures reveal the human cost; 180 children do not have an allocated social worker and are still waiting for a full assessment.

Read on here.

Play is a post code lottery for deafblind children like Ruby

Ruby Barcham, her mother Lesley is campaigning for accessible play opportunities
Ruby Rogers, her mother Lesley is campaigning for accessible play opportunities

Guest blogger Lesley Rogers is chairing the charity Sense’s inquiry, The Case for Play into the lack of access to play opportunities for under-fives with multiple needs. Lesley is involved alongside co chair David Blunkett, the former education secretary, and Julie Jennings from RNIB as an expert advisor.

Play is an important part of childhood, it’s where children learn about the world around them, build relationships and friendships. But I know from experience with my eight-year-old Ruby that children with multiple needs often don’t get the same opportunities to play as other children.

Ruby was born with a rare condition called CHARGE syndrome and is consequently deafblind, she also has a heart condition and feeding problems.

We struggled from the very beginning to find appropriate play opportunities for Ruby. From finding accessible play groups to swimming pools and play parks. Every activity and opportunity for play has to be checked it’s accessible and appropriate beforehand, if it’s not, I have to ask for adaptations – and if those can’t be made, we can’t go and Ruby misses out.

But for children like Ruby, play is even more important. It was through play that we learnt to communicate with each other through basic sign language, through play Ruby is developing her muscle tone and through play she’s learning to connect with others around her.

We initially struggled to find appropriate play and activity groups. When Ruby was younger I wouldn’t take her to regular toddler groups, I felt vulnerable and isolated. I didn’t want to explain Ruby’s condition to other parents, and I wanted to go to places where I could meet people who would understand.

When Ruby was 18 months we were introduced to the deafblind charity Sense, it was a lifeline. We started going to the Sense play group, Sparkles, in Barnet. It used to take me 40 minutes to get there, but it was worth it. You didn’t need to explain to anybody what was wrong; if you came along with a feeding pump and a suction machine, it was accepted. I found everything I needed there, support from other parents and expert knowledge from staff.

Over the years I have spent so much time researching activities and play opportunities on the internet. I don’t want Ruby to miss out so I have thoroughly explored my borough but nowhere fully meets her needs. I’ve learnt that you have to be very proactive; I approach establishments, tell them about Ruby and ask if they are willing to make adjustments.

I hope that the inquiry will raise awareness of the challenges families like ours face every day. I hope that the government listens to the evidence and the recommendations that Sense presents and that appropriate changes are made following this. I hope that families get more support, particularly in the early years when parents could be feeling overwhelmed and confused. The earlier they receive help, the sooner they can provide the right support to their children.

With the right support, Ruby has the chance to enjoy play and leisure activities. She loves swimming. She goes once a week with school. It’s a great achievement that Ruby is able to attend the sessions. Ruby doesn’t like cold water so together with the school we contacted the leisure centre to see if they would be willing to open the jacuzzi and smaller warmer pool for us, we also needed an extra life guard and extra time in the changing rooms which they agreed to.

Ruby goes to the pool with her intervenor, her intervenor is basically her eyes and ears, she shows Ruby how to do things in a way that she understands. The intervenor will take toys into the pool, she’ll flick a ball to Ruby and Ruby will flick it back. Through swimming Ruby is strengthening her muscle tone, she’s also learning to socialise with her classmates which is great to see.

The most common barriers in terms of access to play settings for children with multiple needs is that there just aren’t enough places that are accommodating to children with multiple needs so accessibility is a big one.

There is a lack of information about play groups and activities that are suitable. For example we got introduced to Sense when Ruby was 18 months, it was a lifeline for us and I wish we knew about them earlier. Quite often you find out about things through word of mouth, this shouldn’t be the way. Parents need support as much as the children. It’s vital, particularly in the beginning.

Also I don’t often have confidence in the staff to leave Ruby with them. For example, I need to know that the staff can feed her and that they can sign. The reality is these places are few and far between, I have fully explored my borough and there is nowhere that fully meets her needs, this means I have to go with her all the time. Or use an intervenor.

What more can be done to boost such opportunities? Parents should have better access to information and advice on how to play with their child. Disabled children and their families should be involved in the design of play spaces and sessions to ensure they meet their needs.

There should be better training of staff and management at play groups etc. Often parents of children with complex needs have to come in and train staff how to care for their child’s medical needs. Every local authority should provide accessible play opportunities that meet a range of needs, in both specialist and mainstream settings.

All children and their families should have early access to support from specialist workers. Local authorities should make early intervention through play a funding priority.

A focus on play just isn’t seen as a big priority in the current financial climate. It’s turned into a kind of post code lottery for families, local authorities can now make their own choices about whether to prioritise play – some local authorities still have a local play strategy and continue to invest in play whilst others do not. This is despite the fact that funding early intervention and development is the best way to make a saving in the long term.

* Sense is calling for evidence from parents of children with multiple needs, specialists from the disability sector and practitioners. Visit the Sense website to get involved. For more information about the inquiry, email playinquiry@sense.org.uk

Tailor made theatre for an overlooked audience

The Forest, by theatre company Frozen Light, immerses the audience is in the multi-sensory world of  (pic: JMA Photography)
The Forest, by theatre company Frozen Light, immerses the audience is in the multi-sensory world of (pic: JMA Photography)

“Today is different” is a recurrent phrase in the latest show from theatre group Frozen Light. But the refrain is more than just part of the script; the words also reflect the innovative company’s hope for young people with profound disabilities.

The plot of the accessible, inclusive and multi-sensory play involves a journey of self-discovery for the main characters, Thea (Amber Onat Gregory) and Robin (Al Watts). Both dream of escaping their humdrum hometown existence, and a series of unexpected events, explained by narrator Ivy (Lucy Garland), result in a forest adventure, which changes their lives.

Frozen Light, led by co-artistic directors Garland and Gregory, is among a handful of companies that devise productions especially for people with profound and multiple learning disabilities (PMLD). While cultural access and inclusion have improved in recent years (projects like Autism Friendly Screenings are part of a burgeoning movement), the arts barrier remains down to people with complex physical and cognitive issues.

The group is currently on a nationwide tour of high street theatres and arts spaces. Garland and Gregory say many of their audience members have never before been into a mainstream theatre: “We want to enable people who rarely attend high street arts venues to experience the theatre. With our 26-date tour, we hope to reach as many people with PMLD as possible…We want people with profound needs to be more visible in their local areas.”

Recent work from the Lancaster Centre of Disability Research suggests there are over 16,000 people in England with PMLD, with an average area home to 78 adults with such needs. Think about where you live, when did you last see someone with profound disabilities on your high street, let alone any of your arts and community venues?

Performing to a maximum of 12 people – six people with disabilities, each supported by a carer, the three-strong cast accompanies the audience from the foyer into the performance space, ensuring a smooth transition into the theatre environment. One-to-one interactions include actors singing or talking directly to an audience member, or offering a prop to be touched. The specially composed music is pitched at an appropriately sensitive level.

In the audience for the opening performance of the tour at the Gulbenkian in Canterbury, Kent, I was drawn into the show’s multi-sensory world; swathed by leaves with a warm breeze on my skin, I could smell forest fruits and the scent of a wood after rainfall (I’m not taking poetic liberties – this is a factual description of how the show sparks your senses). The actors captivate the audience with the use of simple props and, I won’t spoil it, but the combined effect of helium balloons, LEDs, torches and white discs is quite hypnotic.

It was noticeable how much time the actors spent with each person, adapting their interactions – language and behaviour – according to need, ability and interest. One young boy who particularly enjoyed the feel of rain drops on his hands was allowed time to explore the sensations and appearance of drizzle. His joyful reaction was priceless.

Given I write and read so much about (warning: social care jargon alert) “choice and control” and “person-centred planning” or “personalisation” (ie when the unambitious “choice and control” box ticking basically means offering someone the choice between water or tea to drink..) – this was truly “person-centred” performance.

I did some editorial support work the company some months ago and, having come across the show in its conceptual infancy, I was blown away – almost literally, given the multi-sensory context – to see the fully fledged performance (a note of transparency here: this blogpost is mine and mine alone, written in my own time and, like every post on this site, independent, unsolicited and unpaid for).

Talking to parents and carers in the foyer after the show, several told me how their young people are starved of theatre that is tailor-made with complex needs in mind, but which also manages to be high quality and pitched at the right level for the audience (ie unpatronising).

One father told me his visually impaired son’s attention span was short, but he was moved to see the teenager captivated by sound, scent, taste and touch during the performance.

After the show’s premiere at the New Wolsey Theatre, Norwich, website The Public Reviews described The Forest as “the ultimate 3D live interactive performance”, and this detailed review by Max J Freeman is worth reading too for its reflection of the audience’s thoughts. And this Guardian piece by Frozen Light explains how the group stages its work for its audience.

Provoking some thought and evoking the senses, The Forest leaves you wondering why every day can’t be as different for its audience as “today”.

Arts festival uses digital tech for social inclusion

Participants promoting their festival. Photo: Stephen Candy
Participants promoting their festival. Photo: Stephen Candy
A 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.
Creating percussion sounds for the music element of the festival. Photo: Annalees Lim.
Mixing music for the festival. Photo: Annalees Lim .
Mixing music for the festival. Photo: Annalees Lim .
SprungDigi crew member mixing SprungDigi theme song. Photo: Stephen Candy.
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.

Rocket science and reality: The Tale of Laughing Boy

The Tale of Laughing Boy from My Life My Choice on Vimeo.

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”.

* You can read more here and follow the Justice for LB campaign on Twitter.

The role of siblings in the care of disabled adults

Anila Jolly and her older brother Sunil pictured recently
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.

Exhibition reveals hidden history of learning disability

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All images copyright Jürgen Schadeberg

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 Castle Hospital

Hensol Castle Hospital

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.

While life in the community is meant to have replaced segregation in institutions, some 2,600 people with learning disabilities or autism are stuck in the kind of units meant to be consigned to the history books. These include assessment and treatment centres run by the NHS and private companies, like the Winterbourne View unit. The preventable death of Connor Sparrowhawk (aka Laughing Boy or LB) in one of these “waste bins of life” sparked the Justice for LB campaign and the LB Bill, demanding more rights for people with disabilities and their families.

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.