Category Archives: Social exclusion

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.

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.’

Exhibition: from exclusion to empowerment

Shankarlal in his shop.
Shankarlal in his shop.

Some striking photographs here of the social inclusion work in India and Africa by the charity Sightsavers. Shot by Guardian photographer Graeme Robertson, the images show “empowered lives and the impact of exclusion”, tying in with International Day of Persons with Disabilities and the international charity’s Put Us in the Picture campaign.

Campaigning in my community for mental health

Each time I return to my childhood village the memories come flooding back.

Memories of football in the street and endless walks along rugged cliffs that are some of the highest in the country. A sense of innocence from another era now gone forever.

My native town is Staithes, a small fishing village nestling beneath cliffs on the north Yorkshire coast. A tourist attraction in summer, Staithes is synonymous with Captain James Cook who worked and lived there prior to setting sail to discover Australia.

My childhood growing up in the village was mostly uneventful but rocked by my parents’ separation and my father’s mental health issues. Mental illness was very much misunderstood in the village and this was no different to any other village in England at that time.

Over 50 years later, and nearer to the grave than the cradle, I now want to return to my roots to try to bring about change, however small, around attitudes to mental health. I want to raise awareness in the village of the stigma of mental health and how it impacts on the sufferer and their families. A stigma as dangerous as the high cliffs I would climb as a child and the raging sea that batters the village in winter.

Stigma and discrimination of mental illness exists in all villages and towns. Time To Change, England’s largest mental health anti-stigma programme seeks to change all that. I volunteer for Time To Change and use my qualified psychiatric nurse knowledge and and personal ‘lived experience’ to try to bring about more awareness, understanding and tolerance of mental health.

I feel confident that the event next Thursday (24 July) will be successful. Why? A sense of community exists to this day in Staithes, which I believe is part of being from North Yorkshire and who we are as a people. A down to earth friendliness, community spirit, and willingness to help others in time of need.

What I have organised is an informal evening in the village hall to raise awareness, educate, and de- mystify some of the negative and damaging misconceptions of mental health; SOS Staithes Opposes Stigma of mental health (the title “SOS” reflects the international distress signal ‘Save Our Souls’ which the village, a once thriving port, uses so I thought that would be an apt title).

I will also talk about my advisory work with Steve Halliwell, who played the character Zak Dingle in the television soap Emmerdale , to help craft the award winning depression storyline. This was done with the aim of making mental health depictions on TV more realistic and sensitive. People here in identify with Zak Dingle as the programme is Yorkshire-based.

So far the response to my evening event has been very positive. I have visited the village and left posters everywhere. I have spoken to some people I already knew and strangers who I can now call friends. They have been very open and honest about their own mental health issues or spoke of people they know and care for. This has enthused me all the more. I appreciate their being so open and trusting very much.

I wish I had possessed the same feelings of acceptance, understanding, and trust all those years ago as a child around my fathers illness. Small rural communities such as this are more isolated than the larger towns and cities and as a consequence people are often left feeling more alienated and lacking support. I often say as a child I did not understand the word stigma but I certainly knew how it felt.

My aim is simple. I would like the people in the village to be more aware of mental health issues and how mental illness it is indiscriminate. How it effects one in four of the population and that nobody is immune.

I would like the young people to see me as a positive role model and for them to be influenced to try to bring about change themselves in whatever way they can. I would like everyone to understand that Time To Change is a social movement for change and they can all play a part, no matter how small, in this ground breaking campaign.

The young people are the future of the village. They can all make a difference to the villagers of tomorrow as well as today by their words and their actions.

• SOS: STAITHES OPPOSES STIGMA of mental health. Thursday 24th July 7 – 9pm held in Staithes village hall – An informal evening of interaction and discussion around mental health. Free entry by ticket. Refreshments available and free promotional Time To Change materials. Tickets from Lol Butterfield on 07958064025, Veronica Foster on 07891607786 or members of the village hall committee.

No-one should ever have to feel like they are not worth helping

Richard Turner and his volunteer befriender, Delia Jones
Richard Turner and his volunteer befriender, Delia Jones

“No-one should ever have to feel like they are not worth helping…”

I saw these striking words on a postcard displayed at a recent event to celebrate volunteering. With the massive cuts in public spending and the unprecedented reform of welfare, it’s not hard to see why vulnerable people might think they don’t deserve any support.

The words, written by someone with experience of volunteering, referred to the vital work of London-based charity the Octavia Foundation. In full, the handwritten postcard read: “No-one should ever have to feel like they are not worth helping and Octavia does such a good job of making sure that doesn’t happen.”

The event was Octavia’s annual volunteer awards, honouring some of the 250 local people who have given their time to others through the charity over the last year. Actor Tamsin Greig presented awards to those who support work with local people affected by ill health, social isolation, unemployment or poverty.

The foundation operates in the west London boroughs of Westminster, Kensington and Chelsea, Hammersmith and Fulham, supporting older people, working with young people, focusing on training and employment and debt advice. It runs regular groups and activities as well as some inspiring one-off projects which I’ve written about in the past.

The foundation works in one of the most affluent parts of the capital, but there is much for the charity to do in the pockets of deprivation that also exist.

I helped judge the charity’s awards, reading some incredible testimonies from people who benefit from the help of volunteers.

Delia Jones, who volunteers as a befriender for example, was highly commended. Delia was nominated by Richard, who she visits and who was involved in a serious car accident almost 40 years ago – both are pictured above.

Richard’s mother Joyce Turner, 95, who also nominated Delia, explained: “What Delia does for Richard is vital. He will tell Delia what kind of book he wants, as we have a lot of different kinds and we arrange them alphabetically so she can find them. Delia seems exactly right, and we love her visits because it gives Richard such pleasure to see her. The importance of her visit every week is that he only goes out three times a week, and if its raining or bad weather, she is the only thing that he looks forward to. She never lets us down and we can trust her.”

With welfare cuts and a squeeze on public sector funding, many support services are under threat so the work of volunteers is vital in helping society’s most vulnerable people. Some of the most innovative ideas – and inspiring, unsung heroes – are found in small, community-based projects that often don’t get the attention they deserve. The recent Octavia awards are an opportunity to put that right and focus on the important work carried out in local areas.

A full list of winners and background to the awards is on the Octavia Foundation website.

Telling the untold stories of austerity


Women in Croxteth, Liverpool, discuss the impact of cuts on communities, part of the research for the new book, Austerity Bites

Do you know what austerity really means?

Here’s a definition from the Collins Dictionary, as quoted in Mary O’Hara’s commanding new book on the subject, Austerity Bites: “…difficult economic conditions created by government measures to reduce the budget deficit, especially by reducing public expenditure: a period of austerity/austerity measures.”

But that literal definition, and the words of politicians using the rhetoric of austerity to mask the harsh impact of public spending cuts, conveys nothing of the human cost of the unprecedented reform of the welfare state.

Austerity Bites redresses that imbalance. I don’t usually do reviews on this site, but this timely book demands attention.

Reading this book means you join the award-winning journalist O’Hara in her “journey to the sharp end of cuts in the UK”. Based on a 12-month trip around the country meeting diverse people affected by cuts as reforms were introduced in 2012 and 2013, O’Hara gives a platform to untold stories of hardship.

O’Hara’s book suggests, “austerity” has become an acceptable rhetoric, one that glosses over the harsh impact of welfare reform – as in “cuts hurt but in the age of austerity, what else can we do?” The creeping normalisation of food poverty and food banks, as explored in this book, is shameful.

While an intricate explanation is given of the political and economic context, it is the lives of those whose voices are rarely given a platform – the homeless, the disabled, the young among them – that are the focus here.

Crisscrossing the country, the picture is one of political classes living in a “bubble” untouched by the harsh reality of life on the front line of Austerity UK; a massive chasm between the people suffering from the impact of cuts and abolition of vital benefits and the people making the decisions to abolish that support.

People talk of “breaking point”, “existing not living”, their “desperate situation”; the book does much to explode the myth of benefit Britain. A fairly comprehensive catalogue of unfairness is chronicled in Austerity Bites – the disabled, for example, are shown to be bearing the brunt of cuts, the vulnerable are made more vulnerable and the poorer become poorer.

As one man, Dec, who O’Hara meets on a Luton estate tells the author: “Do I deserve better? Do other people deserve better? I think they do.”

Unsettling, but vital, reading, this book lays bare the real, true story of austerity.

We need to listen to the quieter voices

Weaving, Raana Salman
Weaving, Raana Salman

Today is the start of Learning Disability Week 2014, the annual campaigning and awareness drive run by Mencap.

This year’s campaign week celebrates people overcoming adversity, prejudice and ignorance and it’s a welcome moment to focus on the positive amid the social and political inequity faced by people with learning disabilities (you can follow events and issues on Twitter using the hashtag #LDWeek14).

I’m thinking specifically of just two issues I’ve recently reported on; the needless death of young Connor Sparrowhawk and the consequent #justiceforLB campaign, and the related fact that people with learning disabilities feel ignored by politicians.

So today’s post is linked to something I’ve blogged here before, in a piece on a thought-provoking arts project run by the charity Creative Minds. There is growing – although unfortunately as yet not mainstream – debate about “learning disability arts”, and the quality of work being produced by people with learning disabilities.

Firstly, I want to share some of my sister Raana‘s artwork.

Obvious bias and sibling pride aside, so many friends and family have been genuinely surprised and impressed – and no, not in a patronising way – when I’ve revealed the creation they’re admiring has been crafted by my sister. Seriously – why would I hang crap on my walls (unless from an elephant and painted by Chris Ofili)?

She may not be a conversationalist or a writer, but pictures speak a thousand words and what she’s made is bold and beautiful. That said, Raana still produces her signature lozenge-shaped bullet cars and blobby, squat people (the hair is always spiky – a hangover from her boyband-loving days…these pieces are most definitely not on my walls), but here’s a taster of why I love what she does:

Mosaic collage, Raana Salman
Mosaic collage, Raana Salman
Felt work, Raana Salman
Felt work, Raana Salman
Detail from landscape, Raana Salman
Detail from landscape, Raana Salman
Pottery, Raana Salman
Pottery, Raana Salman
Church, Raana Salman
Church, Raana Salman

Secondly, while thinking about an art-related post, I came across some powerful pieces of work produced by members of Outside In. Based at Pallant House Gallery in Chichester, the project is a platform for artists “who find it difficult to access the art world either because of mental health issues, disability, health, social circumstance or because their work does not conform to what is normally consider as art”.

The pieces here are by artists who happen to have learning disabilities.

Aeroplanes & Spades, by Manuel Bonifacio
Aeroplanes & Spades, by Manuel Bonifacio
Musicians, by Michelle Roberts
Musicians, by Michelle Roberts
Hippo, by Neville  Jermyn
Hippo, by Neville Jermyn
Harry Potter Books, by Josie Goddard
Harry Potter Books, by Josie Goddard

The works should trigger some questions about “outsider art” and the gap between the treatment of and attitudes towards people who have learning disabilities and those who do not. What the Outside In project calls “the idea of there being an ‘us’ and ‘them’”. As one of the project’s award-winning artists, Carlo Keshishian, believes that “Outside In can function as a mouthpiece to project the voices of quieter people.”

That’s what we need – more people listening to and acting on the wishes of those whose voices (and by voice I mean profile, choice, representation, status) are not as loud as those in the “mainstream”.

And finally, take another look at the photographs of the artwork on this page. Ask yourself this, if you didn’t know, how many of the pieces would you genuinely have thought were produced by people with learning disabilities?

* I can’t end this post without signposting you to the colourful creations here by “industrious artist” Connor Sparrowhawk, aka LB, currently being sold in postcard and print form to raise funds for legal representation at the inquest. Connor died in a specialist NHS unit last year and the #JusticeforLB campaign is pushing for answers about his death and raising awareness about learning disability – this letter signed by more than 500 people, explains the issues and necessary action.

Colour, Connor Sparrowhawk
Colour, Connor Sparrowhawk

Charity helpline supports abuse victims with learning disabilities

If Simon Tovey gets anxious before using the bathroom, you might assume his panic is linked to his learning disability. Maybe the public convenience is unfamiliar?

Yet Tovey’s fear is the result of the abuse he suffered at Winterbourne View assessment and treatment unit. He featured in the 2011 Panorama expose of the privately run unit near Bristol where he was kicked, punched, verbally tormented – and threatened with having his head put down the toilet.

Tovey’s mother, Ann Earley, says of her son, 40: “The Simon that returned to us was not the same one who left. He was profoundly affected and unable to put into words how he felt. He has a long-term fear of toilets – that’s just one small thing. The other impact is incalculable, like his fear about what’s going to happen next.”

Three years on from the Winterborne View scandal, the effect on residents has been huge – but a specialist helpline offers support for them and their families. Read the rest of my piece on the work of the charity Respond on the Guardian’s social care network.

Ann Earley and her son Simon, who was abused at Winterbourne View specialist unit in 2011
Ann Earley and her son Simon, who was abused at Winterbourne View specialist unit in 2011

Development and disability: new report urges action

Hazrat Bilal and family, Bangladesh (pic: Sightsavers)
Hazrat Bilal and family, Bangladesh (pic: Sightsavers)

Hazrat Bilal from Narshingdi, Bangladesh, has been blind since birth, but it was only in 2008 at the age of 33, with support from Bangladeshi charity Action for Blind Children, that he was officially registered as permanently disabled. That led to more support from services for the visually impaired; Hazrat got to know other people with sight problems and began to gain confidence.

The 39-year-old now runs his own grocery shop and has helped form a self-help group. It was only after help from the local charity, a partner of international charity Sightsavers, that his life was transformed but if more international development and aid plans were disability-inclusive, there would be many more stories like Hazrat’s.

One billion people all over the world – 15 per cent of the population – have a disability, according to the World Health Organisation. Of that total, 80 per cent live in developing countries.

Despite the fact that one of the eight Millennium Development Goals that world leaders agreed in 2000 was that every child should have a full primary education by 2015, more than a third of the 57 million children worldwide missing out on school have disabilities (see this stunning picture story about blind schoolchildren in Uganda). It seems incredible but disability was not included in the Millennium Development Goals.

Disabilities contribute to global economic, political and social development but it is well documented that development programmes overlook disability issues. That may change if a new report by the International Development Select Committee on disability and development has any impact. Today’s report urges the Department for International Development (DFID) to strengthen its work to include people with disabilities and calls for a focus on disability as a development issue.

The report’s recommendations echoes some of the actions outlined in international charity Sightsavers’ Put Us in the Picture campaign. Launched last year, the campaign calls on policymakers and politicians to include disabled people in international aid and development plans, highlighting the links between disability and poverty.

Specifically, the campaign says the government must ensure people with disabilities participate in, and benefit from, international development programmes and must talk, listen to and work with people with disabilities and their families. It also argues that DFID staff should be trained to include people with disabilities in their work.

You can support the Put Us in the Picture campaign here or follow it on Twitter with the hashtag #InThePicture

In style and inclusive

Natalie Birch, left, and Jazz Nightingale at a Find My Style session (pic: Flamingo Foundation)
Natalie Birch, left, and Jazz Nightingale at a Find My Style session (pic: Flamingo Foundation)

Disability and dress sense aren’t mutually exclusive. Take the first-ever New York fashion week model to work the runway in a wheelchair. It’s an obvious (and frequently made) point but, as wheelchair-using model Danielle Sheypuk said during her first New York Fashion week, people with disabilities are consumers of fashion.

There’s already plenty of good debate out there about the fashion industry’s attitudes to disability (see also the BBC’s Britain’s Missing Top Model) but alongside the more high profile attempts at awareness, it’s important to see some smaller, community-based projects aiming for change from the ground up.

A charity-led project recently launched in Hertfordshire, hoping to change preconceptions about fashion and disability and encourage young adults with physical and/or learning disabilities to be more confident with their style.

The Flamingo Foundation charity has launched Find My Style with Hannah Jean, a fashion stylist and image consultant.

Stevenage teenager Jazz Nightingale took part in the first fashion styling session recently. Jazz, who tried a session at Oaklands College in St Albans. The 19-year-old says “I was interested in the session because I like to follow fashion just like other young people. It helps me express myself and my favourites are patterns, sparkly clothes and scarves….The session with Hannah helped me think about what sort of styles are on trend at the moment and what would suit me. Learning how you could alter your clothes to suit your own needs was great too. It really helped boost my self-confidence.”

Natalie Birch, also 19, has a learning disability and while she admits she is “happiest in hoodies, t-shirts, trainers and joggers”, she says the styling session gave her fresh ideas about style. She ends, “The fashion industry could do more to support disabled people by using more disabled models in magazines.”

The project was funded by London bar Embargo 59 with proceeds from a fundraising cocktail evening during London Fashion Week in February.

* Read more about the sessions here or contact info@flamingofoundation.org to run a session for a group of young adults