Tag Archives: charity

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.

Photographs offer fresh perspective on disability

Alliance by Tim Beale
Alliance by Tim Beale

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 Harrison
Ready for a ride, by Daniel Harrison
Coco by Kyle McKay
Coco by Kyle McKay
Blue Body, by Rory Davies
Blue Body, by Rory Davies
The Old Tree, by Emily Buck-
The Old Tree, by Emily Buck-
The Park, by Takis Koumentakis
The Park, by Takis Koumentakis
Swimming with frogs, by Klay Green
Swimming with frogs, by Klay Green
Cheeky Robin, by Steven Padmore
Cheeky Robin, by Steven Padmore
Shadow Stories, by Lillie Davies
Shadow Stories, by Lillie Davies
Hello, by Takeo Niikura
Hello, by Takeo Niikura

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.

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.

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.

Groundbreaking digital project to tackle domestic violence

With today the United Nations’ International Day for the Elimination of Violence Against Women, I was interested to hear of a scheme from the States that aims to help abused women find support online within seconds.

The web is full of information about domestic violence, but searching for local, reliable and relevant services often means trawling through and weeding out old information and advert-laden sites.

The recently launched American resource Domestic Shelters seeks to put that right. “Aggregating an ocean of information into a single place” is how project leaders refer to the scheme.

The newly launched project, a partnership between the American National Coalition Against Domestic Violence and charity Theresa’s Fund, says it is the first and largest fully searchable directory of domestic violence projects in the US, and includes around 3,000 places for women to find help quickly and easily.

Users enter their location, language and service preferences (emergency shelter, for example, or advice), and at a click, can find the nearest, most appropriate support. Recognising the fact that people increasingly use phones and tablets to conduct searches website is optimised for such devices.

I don’t know enough about the American support system to comment on the quality of resources people find via the new website, nor their accessibility, but the project got my interest as it comes at a time when domestic violence refuges in the UK are at crisis point.

One in four women (and one in six men) in the UK will be a victim of domestic violence during their lifetime, according to research. Two women a week are killed by a current or former male partner.

This is what one domestic violence campaigner and writer, Sarafina Bianco, has said about the project: “If this site had been around while I was searching for help, I probably could have started my healing journey much sooner.”

She adds: “When I was preparing to leave my abuser, I did not know there were non-profits working to support survivors of domestic abuse, so I secretly planned by myself, hoping my logic would surface at a time when I was truly panicking and in a traumatic state. That was five years ago. Even after leaving and finding out there were resources, it took several Google searches to find the local non-profits in my area.

“Still, I couldn’t help but wonder, if it was difficult for me to find them after leaving, how someone still in their abusive relationship could find them without getting caught…Domesticshelters.org streamlines a very important process for any person, at any point in their recovery, to find the nearest service providers who will help them begin thriving in society once more.”

While the project only launched a couple of months ago, you can see how its benefit may go beyond the immediate goal of signposting to the right support; in time, depending on how its search terms and traffic are analysed and the results shared, it might shed some light on the kinds of services the country needs more of.

Tech two: UK charity recycles computers to Africa

African students benefit from the UK's unwanted, recycled computers (pic: IT Schools Africa)
African students benefit from the UK’s unwanted, recycled computers (pic: IT Schools Africa)
Stories of public sector waste and inefficiency are commonplace, not least amid the current climate of cuts and the notion of “doing more with less”. Which is why I was interested to hear of a project in Gloucestershire that collects old computers from police, NHS and other public bodies and charities, gives them a new lease of life and distributes them to African schools.

IT Schools Africa, which celebrated its 10th anniversary last week, collects old, used machines in the UK, refurbishes them – dismantling them and fixing software problems, for example – before sending them to schools in Africa.

Given the recent news of dodgy tech hardware – and frankly even dodgier tech opinions – it’s a good time to be reminded about IT’s positive impact.

The charity has sent more than 44,000 recycled computers to eight African countries since its launch, allowing an estimated 3m children access to technology. It also delivers technical support and IT teacher training in the schools.

Schools in Africa benefit from the UK's revamped computers (pic: IT Schools Africa)
Schools in Africa benefit from the UK’s revamped computers (pic: IT Schools Africa)

Manufacturing a PC, as the charity points out, consumes 240kg of fossil fuels, 22 kg of chemicals and 1.5 tonnes of water. So re-using the machines not only benefits young people in Africa, but helps the environment (once the computers have reached the end of the lives in Africa, the charity also recycles the materials and parts).

In the UK, the charity offers work experience to local students and to young people with special educational needs as well as to the long-term unemployed. It works with three prisons – Cardiff, Whitemoor and Winchester – where prisoners work to refurbish computers.

Work experience students working to refurbish computers for Africa  (pic: IT Schools Africa)
Work experience students working to refurbish computers for Africa (pic: IT Schools Africa)

Over the last three year Gloucestershire Constabulary has donated 275 computers, the local NHS Trust 194 computers and charity donors include the Wildfowl and Wetlands Trust (147 machines), the Order of St Johns Care Trust (208 computers) and the Royal Hospital Chelsea, which gave 21 computers.

Private sector firms and individuals are also among those donating machines, and the charity is using its 10 year landmark to renew its fundraising dive, hoping to expand its network of donors and its work with prisons.

Find out more here.

Immigration: what is it like for a child?

An image from the new book Billu Leaves India! (Artist: Iain MacLeod-Brudenell)
An image from Gersh Subhra’s book Billu Leaves India! illustrated by Iain MacLeod-Brudenell

How does a young child cope when he is suddenly uprooted from the people and places he loves and confronted with a new home in a distant, completely alien land? What was it like for a child to be among the first immigrants moving to Britain from the Indian subcontinent in the 1960s?

I like the idea behind a new children’s book, Billu Leaves India!, because it presents the rarely told story – from the perspective of a child – of the impact of immigration on younger members of the family. Launched yesterday at the University of Derby’s multi-faith centre , it aims to help children of immigrant families “make sense of the feelings of dislocation and strangeness, which are part of the immigrant’s journey”.

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Although fictional, the storybook for children aged seven upwards is loosely based on the childhood experiences of its author, University of Derby associate lecturer Gersh Subhra, who left his small Indian village in 1964 aged four; the family settled in Coventry. Profits from the book go to Oxfam and Derby Open Centre, which promotes better understanding between cultures in the city. The author volunteers with both organisations.

drawing copy

The book tells the tale of six-year-old Billu, who leaves his beloved village in India to emigrate to England in the 60s with his family. The book focuses on the boy’s relationship with his beloved uncle Tyaa. Tyaa makes his nephew a copper bowl as a leaving gift, symbolising the pair’s long-distance relationship.

openingdoor(E) copy

Subhra, a former youth and community worker and ex-head of the university’s Centre for Community Regeneration, explains: “ “As a boy, I grew up with stories about India and the journey that many in our community made from there to England. These anecdotes were filled with all of the emotions one can imagine; the doubts, as well as the hopes and aspirations involved in moving to a new life.

“Because it was a long time before I went back to the village of my birth in India, I’ve added into my story a fictional perspective on what it might have been like. I even had an uncle who was a bit like Billu’s who, unfortunately, I never saw again after I left for England.”

boyandlady(E) copy

Billu Leaves India! is illustrated by artist Iain MacLeod-Brudenell – also a former University of Derby lecturer – and is published through Matador, part of Troubador Publishing. Copies can be bought via the publisher’s website or on Amazon.

Specialist dementia care for black and ethnic minority families

“They should not suffer in silence”, says Amina Begum, a full time carer for her mother, of why we need more culturally specific dementia services for black and South Asian communities.

Speaking to me for a Guardian piece published today ahead of World Alzheimer’s Day on Sunday, Amina spoke about the contrast in support between when her father had Alzheimer’s (he died seven years ago) and today, as she cares for her mother, Jahanara, who has vascular dementia.

Amina is lucky; there is strong targeted support in Tower Hamlets for the area’s Somali, Chinese and Bengali communities. But while there are pockets of great practice, such as the Alzheimer’s Society’s monthly “dementia cafes” that Amina and her mother attend, such specialist care is not widespread. This is despite the fact that African-Caribbean and South Asian UK communities are at greater risk of developing dementia than the indigenous white population.

Amina Begum, a full time carer for her mother who has dementia (photo: Alzheimer's Society)
Amina Begum, a full time carer for her mother who has dementia (photo: Alzheimer’s Society)

Amina told me that as she hears her mother swaps childhood stories with her peers at the Sylheti-speaking dementia cafe, she sees another side to her 65-year-old parent. Jahanara is at ease and animated instead of being confused and frustrated. The pair are among around 200 regulars at the social club for the area’s Bengali community based at the East London Mosque. Continue reading the full piece here.

*Amina and her two daughters are taking part in the fundraising Memory Walk on Saturday 28 September which aims to raise money for research into dementia.

Why did the Salvation Army fail to act on my claims of sexual abuse?

A woman who complained 16 years ago of being abused by charity personnel in the 1970s now wants an inquiry:

The Salvation Army failed to investigate allegations of historical child abuse, according to a woman who told the charity 16 years ago that four of its members had sexually assaulted her in the 1970s.

In 1998, Lucy Taylor (not her real name) told the Salvation Army that four men at her local branch of the charity in the north of England had abused her. Her story suggests she was groomed from the age of 10, assaulted from 12 years old and the abuse continued for eight years until she left the organisation.

Taylor says her complaints were not handled seriously either at the local branch, known as a “citadel”, which was at the centre of her allegations, or at the national headquarters in London. When she later approached police, an investigation resulted in two of the four men being arrested on suspicion of indecent assault. They were later released without charge. For legal reasons the Guardian cannot name the alleged victim, now in her 50s, or the men.

Taylor says: “I want somebody to take me seriously – listen to my problem and help me sort this out”. She adds of her alleged abusers: “I just want them to realise what they’ve done to me [but] part of me doesn’t, part of me doesn’t want them to know how it’s upset me and ruined my life.” Read the rest of my interview and report on the Guardian website.