Crowdsourced art project maps our democratic history

Digital art project Democracy Street allows users to share pictures taken on mobiles.

Digital art project Democracy Street allows mobile users to share pictures reflecting the country’s parliamentary history.

With the election a few weeks away, democracy is the timely subject of a new digital art project designed to shed light on Britain’s parliamentary history.

Democracy Street is curated by artist Jon Adams who has Asperger’s syndrome – a form of autism – and I wanted to briefly mention the crowdsourced project today, on World Autism Awareness Day. Adams’ work focuses “on arts sciences and creativity as a person with Aspergers, including synaesthesia, systemising and sequencing”.

Participants in Democracy Street can use mobiles to take photos that contribute to the digital project.

Participants in Democracy Street can use mobiles to take photos that contribute to the digital project.

The Houses of Parliament have commissioned the project with support from The Speaker’s Art Fund and Arts Council England. A mobile web app allows users to explore and discover streets that have a connection to democracy and upload their own images. Images can include, for example, streets that share the same name as a Parliamentarian or that reflect events in democratic history. Adams will use the data generated by users to create new artistic maps of the UK and as users upload information, it appears on the web app, so you can see the crowdsourced project developing in real time.

The participatory scheme also coincides with the 800th anniversary of Magna Carta and the 750th birthday of Parliament.

More information here.

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Why are stroke survivors being written off?

Paul Luscombe rises confidently from his wheelchair, sets one foot in front of the other and walks steadily between the parallel bars in the rehabilitation gym of his care home.

The simple task is, as Luscombe says, amazing, given that a stroke five years ago left him unable to walk. When he moved into the home from hospital, he spent most days in a wheelchair, hunched over the weaker right side of his body.

Today the 50-year-old’s speech is limited and he cannot yet walk unaided, but he is proud of his “gradual progress” at the Peter Gidney Neurodisability Centre in Dartford, Kent. Luscombe’s care at the privately run home is funded by his local clinical commissioning group, NHS Dartford Gravesham and Swanley CCG, and the possibility that he may live independently again is, he says, thanks to the physiotherapy that is “so important” in that care.

I saw for myself how determined Paul was and how vital the role of physiotherapy is in his care when I met him last week. The full piece is in the Guardian tomorrow and online today and explains how research by the Stroke Association and the Chartered Society of Physiotherapy (CSP) shows that stroke survivors entering care homes are “written off” and not offered adequate rehab treatment.

New residents, according to the study, do not get a stroke-specific assessment within 72 hours of their admission, ignoring National Institute for Health and Care Excellence (Nice) stroke guidelines.

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Poor care for people with learning disabilities

Robin Kitt Callender who died after missed opportunities to save her life (pic: Callender family)

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.

There’s more of my piece in The Guardian.

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Mental health: using song to break stigma

The project Creative Madness in Song raises awareness about mental ill health (pic: Song in the City)

The project Creative Madness in Song raises awareness about mental ill health (pic: Song in the City)

Yanamah was “drowning in the depths of despair…yearning for a glimpse of kindness and a friendly gesture”. Before her mental health deteriorated, as she wrote in a recent poem, she was “a woman of distinction” but now she is “forgotten and lost”. Her words, set to classical song, form part of a groundbreaking arts project to break down barriers about mental health and introduce audiences to a new genre of music.

The Creative Madness in Song project is run by charity Song in the City with The Maudsley Charity, part of the South London and Maudsley NHS Foundation Trust. The awareness-raising drive involves composers working with texts written by people with experience of conditions such as schizophrenia and depression; the songs are performed by classically-trained singers and pianists.

Young composers and people with experience of mental illness have collaborated to produce songs that include compelling descriptions of being sectioned and frank accounts of life with mental illness. There are two two free public concerts in London this week, tomorrow at St Mary’s Church, near Lewisham Hospital, and Wednesday 25 March at Guy’s Chapel, Guy’s Hospital.

The concerts are in partnership with Breathe Arts Health Research, a social enterprise that develops artistic projects in healthcare.

My full piece on the innovative programme can be read here on the social care pages of the Guardian.

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The hidden victims of domestic violence

Beverley Lewis House is the only refuge in the UK that caters for women who have learning disabilities. Photograph: Beverley Lewis House

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.

You can read the rest of the piece here.

The Tizard Centre project can be accessed here and information on Beverley Lewis House here.

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Art show celebrates diversity

Painting by Chantelle Bellinger, from the Nexus art group, Surrey.

Painting by Chantelle Bellinger, from the Nexus art group, Surrey.

The graceful depiction of birds, above, is among the art works on display in a new exhibition celebrating diversity.

I’m sharing some of the pieces here because I was taken by the broad range of subjects and contrasting styles of the artists. Most of the pieces are inspired by nature and natural landscapes.

The paintings were created by participants in the Nexus project, run by care organisation Surrey Choices, and are being exhibited at the Sunbury Embroidery Gallery until March 1 (entry is free). Nexus provides specialist support and activities for adults with physical disabilities and mild learning disabilities.

Work by Bryan Aldridge

Work by Bryan Aldridge

By Chantelle Bellinger

By Chantelle Bellinger

Painting by Marc Leosing

Painting by Marc Leosing

Artwork by Michael Somers

Artwork by Michael Somers

By Terry Prosser

By Terry Prosser

For information, see the gallery website.

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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.

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Innovative project redistributes surplus food to needy

Food donated to FoodHub, for distribution to charities and food banks (pic: FoodHub)

Food donated to FoodHub, for distribution to charities and food banks (pic: FoodHub)

Christmas – for some a time of year to overindulge, for others a desperate effort to feed the family.

With a huge rise in the number of people in the UK relying on food banks, a new London project that is making good use of food left behind when people moving house by collecting it and donating it to food banks and charities.

The organisers, a company specialising in overseas moves, explains: “MoveHub and their partners noticed that families were forced to just throw large volumes of food when they moved abroad – due to customs restrictions – and decided that instead, this food should find its way to people who really needed it.”

The project estimates that the food thrown away during moves across the UK could fill 160 supermarket delivery vans each week. While it acknowledges it “can’t reverse food poverty in the UK”, the scheme is an attempt to “contribute to the organisations helping people get back on their feet”.

Among the charities benefitting from FoodHub is homeless charity Centrepoint.

It is estimated that around 3.5m tonnes of food is wasted every year in the UK and this latest drive is a welcome addition to schemes like the “community supermarket” plan, under which unwanted supermarket food is already re-distributed to needy families.

* This is the last Social Issue post for 2014 – the blog will be back in January. Thanks to everyone who has read, shared, contributed to, commented on and got in touch over the last 12 months, your support’s very much appreciated.

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Mental health on TV: entertainment vs realism and sensitivity

If someone’s arm was broken on TV we would see it bandaged up. If someone had diabetes we would see them receiving insulin. If we see someone had a heart condition we would see them wired up to an ECG machine.

So why when we see people displaying symptoms of mental illness do we usually see this depicted as violent or histrionic, with a focus on the challenge and not the solution?

Christmas is next week – a time of year that can brings an unbearable pressure to people with mental health issues. We are all very familiar with seeing mental illness portrayed in cliched, negatively stereotypical ways on our TV screens. The storyline involving the character Steve McDonald’s unfolding depression in the TV ‘soap’ Coronation Street is generating much interest currently .

I am watching closely as this storyline unfolds, not least because we at Time To Change are advising on this to try to ensure as much sensitivity and realism as possible.

Although only in the early stages of the illness, Steve’s behaviour is causing both consternation and confusion for those close to him, and not so close. People are trying to make sense of it all at the moment. Classic symptoms pointing to clinical depression can often be overlooked in the early stages. The programme is cleverly highlighting this and showing the insidious nature of the illness.

I believe it is all around finding the right balance between providing drama for the viewers but also ensuring mental health is not further stigmatised through lazy, damaging scriptwriting. It is a win-win situation for everyone to have mental health storylines depicted with responsibility, authenticity and maturity:
• viewers will gain more awareness of symptoms and treatment
• the programme will receive positive publicity for the research and efforts made
• a powerful anti stigma message will be ultimately delivered.

It is critical to present as authentic a picture of mental health symptoms and treatment as possible to de stigmatise mental illness. The media plays a role that must never be underestimated. It will educate and challenge opinions, it will inform. The viewers opinions and impressions are often influenced by what they see and hear on their TV screens. In advising on the Zak Dingle depression storyline in Emmerdale, I was at pains to reinforce how the illness not only impacts on the sufferer but also the family and significant others.

This is the reality.

The person who is ill does not usually suffer alone, their families/partners have usually cared for them before they seek help and continue to provide care afterwards. I will be watching the Coronation Street storyline to see how those near to Steve are effected by his own deterioration. It must also be realistic in showing the time span of the illness. It would be ludicrous for the viewers to see a decline into severe clinical depression undermined by a miraculous recovery within weeks.

Unfortunately drama that portrays a swift recovery only serves to misinform and mislead. Realism and credibility is then left on the cutting room floor. This is why good research is the key alongside learning the lessons of the past. Lessons need to be learnt and I strongly believe this will be the case in the Coronation Street plot.

Recent research by Time To Change has shown that attitudes are changing as a consequence of responsible media portrayals of mental health. We must not become complacent though and continue to build on the good work so far.

Coronation Street is a very popular soap. Many will be watching for the drama and entertainment element, while others will be scrutinising closely to look for a positive, realistic depiction.

I want these reasons to combine.

I hope nobody is left disappointed or disillusioned. I am excited by this storyline and so should others be. Excited because the storyline will, if successful, leave a seed of hope and a motivation for change in everyone’s minds. That seed will eventually grow into a realisation that when covering the topic of mental health, it is crucial this is responsibly portrayed in the media.

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Campaigning new disability rights network for London

Disability campaigners in west London have long fought against cuts

Disability campaigners in west London have long fought against cuts

A new organisation bringing together disabled people’s organisations in west London has just been launched. The launch of Hammersmith and Fulham Disabled People’s Organisations Network was made on the International Day of Persons with Disabilities last week and coincided with the local authority’s decision to abolish home care charges – something that the campaigners behind the new network (Hammersmith and Fulham Coalition Against Cuts HAFCAC), has long fought for.

The new network will collaborate with the council “to ensure disabled people’s involvement in the design and delivery of new policies and programmes”. In this guest post, Kevin Caulfield, who chairs HAFCAC, and fellow campaigner Debbie Domb, explain more about the new organisation and you can read more here.

Why we launched the Hammersmith and Fulham Disabled People’s Organisations Network:
DD: Our main aims are to promote the rights of disabled people, to support local disabled people to speak up and get their voices heard and to promote the social model of disability.
KC: This is hopefully dawn of new era in Hammersmith and Fulham. We want to work in equal partnership where we can with the new council. Bringing together the borough’s disabled people’s organisations (DPOs) unites our experiences, expertise providing peer organisational support.

How the new group will be different to existing organisations:
KC: We believe it’s the first local network of DPOs certainly in London. We need more than ever to work together to defend and promote inclusion human rights of disabled people.

We believe there’s something of a “tipping point” in disability rights at the moment:
KC: We have had enough of the scapegoating, punitive policy changes pushing us back to the margins and some of us over the edge to desperation, isolation, destitution and in some cases suicide or death by negligence.
DD: In the borough of Hammersmith and Fulham, these factors were magnified as we were ‘David Cameron’s favourite borough.’ (Thankfully no longer ) Policies were implemented here prior to being rolled out nationwide. Disabled people were treated with total contempt by [Tory former council leader] Greenhalgh et al; we were laughed at in council meetings and not allowed to speak. cuts to our services were disguised as ‘efficiencies’ and we were treated as cash generators.
HAFCAC started as a grassroots campaigning group that was entirely self funded. Since then many grassroots campaign groups of disabled people have formed. Ian Duncan Smith particularly targeted disabled people as we were perceived as unable to fight back, groups like DPAC (Disabled People Against Cuts) which spearheaded actions by hundreds of disabled activists show he was mistaken.

There is a raft of issues locally that disabled people are concerned about:
KC: Nearly every aspect of our lives [concern us] but locally
· Hospital closures
· Accessible and truly affordable housing
· The breaking up of schools making inclusion of disabled students less likely
· Charging for services
· Eligibility for state support
· Cuts to standard of living, destruction of the welfare state.
· Closure independent living fund
· Taking our direct payment support service in house with no consultation
· Quality of home ‘care contracts.

HAFCAC is currently campaigning on a number of issues:
DD: Hospital closures, continuing to work with other activists with DPAC and other DPOs currently on saving ILF; we’re waiting for judgement any day now [a high court case has since been lost but campaigners are determined to fight on].

We have a vision for the future work of our new organisation:
KC: I hope we have created a new model for working effectively with a council that is different from involving us just when the decision is about to be made that we are seen as a flagship borough all over for promoting disabled people equality and starting to make it really happen. That we can expose austerity for what it is a calculated pernicious opportunity used to demonise, discriminate, worsen life chances by punishing the poor and marginalised.
DD: Finally we have a council that wants to engage and work with us, the relationship is mutually beneficial. It will be fantastic if Hammersmith and Fulham can be seen as a flagship borough for disabled people’s equality, as rather than as previously the borough who ‘put disabled residents last.’

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