Category Archives: Disability

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.

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.’

Tianze: dreaming of home

Back home, a poem by Tianze Ni. Tianze, who has autism, lives in a specialist unit 200 miles away from his family in Scotland (pic: Nina Ni)
Back home, a song by Tianze Ni. Tianze, who has autism, lives in a specialist unit 200 miles away from his family (image credit: Nina Ni)
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The handwritten song above (typed transcript below) is by Tianze Ni, 17. For the last six months Tianze has lived in a hospital unit in Middlesborough, 200 miles away from his family in Fife, Scotland.

Tianze is desperate to be home. His parents are desperate to have him back. The local council that has placed him in the unit says there is nowhere appropriate for his needs nearby.

I mentioned Tianze’s case in a piece for the Guardian recently on the 2,600 people with learning disabilities stuck in specialist institutions miles from home (you can read more in this post too).

A report commissioned by NHS England attempts to find solutions to the problem. In addition there is a growing grassroots campaign for new legislation – the disabled people (community inclusion) bill 2015, also known as the LB bill) to prevent people from being sent to these places in the first place.

Tianze Ni, who is living at a specialist hospital unit. pictured during a previous Christmas with his mother NIna (photo: Nina Ni).
Tianze Ni, who is living at a specialist hospital unit. pictured during a previous Christmas with his mother NIna (photo: Nina Ni).

Tianze’s mother, Nina, describes the “inhuman treatment” of keeping Tianze away from home. “We are suffering day and night,” she says.

She is not alone. Leo Andrade-Martinez, for example, whose son Stephen, is also miles from home in a similar unit: “No one should suffer like this”.

The stark words of families and of people with learning disabilities are more powerful than anything I can write here.

Here are Tianze’s words; they need to be read and shared widely:

Miss home, back home, by Tianze Ni

Back home,
Back home,
Back home,

I miss home,
I dream home,
I miss mum,
I miss Dad,
My home is in Scotland…..

I miss home
I dream home.
I miss home food
I miss home family together,
I count days to back home …..

Back home,
Back home,
Back home.

* See also Tianze’s petition on Change.org, and Stephen’s.
* See here for information on the “LB Bill“, a draft private members bill that aims to boost the rights of people with learning disabilities so health or social care authorities will find it harder to transfer people to assessment and treatment units miles from home.

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.

Exhibition: how young people with a learning disability picture themselves

Chim, in a photograph for the halow project's new art show (pic: Kitty Day)
Chim, in a photograph for the halow project’s new art show (pic: Kitty Day)

Young photographer Kitty Day, whose sister has a learning disability, wanted to to offer an alternative way for her sibling to express herself – visually.

The result is an exhibition of photographs, entitled This is me, my Voice, my Choice, involving her sister and other young people supported by the Surrey-based charity halow (sic). The show, which opens today, includes portraits of the young people where they present themselves purely as they wish. I’m sharing two of the images, of Chim and Tommy, here.

Tommy, photographed as part of the halow project's new exhibition (pic: Kitty Day)
Tommy, photographed as part of the halow project’s new exhibition (pic: Kitty Day)

Some participants also altered their images with colour or other materials (images not included shown) “to show themselves as they wanted to be seen”, says the charity which works with young people aged 16-35.

Young people from the halow project (pic: Kitty Day)
Young people from the halow project (pic: Kitty Day)

halow, based in Guildford, supports young people with a learning disability “to have the same life choices and chances as any other young person”.

“I wanted to give them the power to express their personality and who they really are, without someone trying to do it for them,” adds Kitty.“I had little control in the studio but I had even less in the editing. The project was done in two stages – one when the group visited me at the studio at City of Westminster College. The second stage was when control was totally given to them. They had a day to personalise their images through cutting, sticking, colouring – whatever they wanted, and I saw the photographs change completely and come to life…I learnt so much about the young people, their perception of themselves and the power of control.”

The exhibition also includes paintings where people depict themselves as a superhero of their choice.

* The exhibition runs at St Mary’s church, Quarry Street, Guilford, from Tuesday until Thursday – contact halow for opening times. Entry is free, says the charity, but donations would be appreciated. On Friday, the exhibition changes venue and culminates in a choir concert at Holy Trinity church in the High Street. Tickets cost £10.00 and are available from halow or tickets can be purchased from the Tourist Information Centre in the High Street.

Disability: trailblazing technology vs. the computer (store) says no

Products designed by disabled students using SHIVA, a pioneering 3D design and print system (pic: Livability)
Products designed by disabled students using SHIVA, a pioneering 3D design and print system (pic: Livability)

Right now feels something like a pivotal moment in disability rights – and specifically for people with learning disabilities – I state this cautiously because we all know that grand plans and wise words still need to translate into deeds.

If you’ve been following the debate about turning the rhetoric of community integration into reality and the plans to tackle the failures in supporting people who have a learning disability, you’ll know there’s a massive gulf between what should happen and what actually happens; between what national policy sets out as “good practice” ideals and what takes place on the ground.

This was brought home to me not only through what I’ve been researching and writing recently, but when I was told of the experience of a group of young people with complex physical disabilities in south east London.

The group from Family Link, Bromley, a charity that offers supports outside school and at weekends, visited a computer store on a Saturday morning. They were looking forward to seeing the latest gadgets and testing some of the equipment on display.

But,they were barely there a few minutes when they were asked by a member of staff to “move on” if they weren’t actually buying anything – despite the fact that there were plenty of their (non-disabled, non-wheelchair using) peers browsing just as they were.

Computer says no.

In fact, the computer your face/body doesn’t fit – so get out.

The group leader protested but, clearly made to feel unwelcome, they left. The charity has since complained to the company, which has apparently noted its objection. Family Link is awaiting a reply. The organiser of the group says she still feels cross thinking about it several days after the event.

She’s not alone, it’s hard not to feel angry about incidents like this, where people with disabilities are made to feel inferior or unwelcome in public places – as I know and have blogged before. And how ironic that the charity had the misfortune to meet such a backward-thinking dinosaur in an evnironment championing the forward-moving digital world.

I won’t name the store here as I’ve not approached it for comment, so to point the finger at the company without offering a right to reply would be shoddy treatment (though, for the record, not as shoddy as the two fingers apparently flicked at the vulnerable young people simply enjoying a morning out).

Maybe there was a misunderstanding. Maybe it simply a rogue sales assistant who didn’t know his Disability Discrimination Act from his disk drive. Maybe there’s lax management at play that allows such attitudes to prevail.

Or maybe it’s because, as I’ve blogged before, despite years of good practice, policy and guidelines, the real pace of change out here in the real world for people with complex needs is slow.

The computer store incident is also regrettable, given what technology offers not only through its assistive form but through its educational benefits (in fact a new report today from the National Literacy Trust and Pearson underlines how touch-screen systems could tackle low literacy among boys and disadvantaged children). There’s the social aspect to technology too; something as simple as a smart phone allows easy use of text and email, for example, meaning my phone-call shunning youngest sister and I can stay in touch more easily.

This stark contrast between practice and possibility was underlined when I heard of an innovative new technology enabling disabled children to design and print objects in 3D – using only their eyes.

The SHIVA design and print system can be used by students with complex disabilities (pic: Livability)
The SHIVA design and print system can be used by students with complex disabilities (pic: Livability)

Disability charity Livability is currently using SHIVA (Sculpture for Health-care: Interaction and Virtual Art in 3D) at its Victoria Education Centre, a school for children with physical disabilities.

The ground breaking collaborative project was created by a group including Mark Moseley, assistive technologist at the school, the National Centre for Computer Animation at Bournemouth University and researchers from the University of Lille.

In a nutshell, “eye-gaze technology tracks where a user is looking and translates it into screen coordinates so that on screen cells or buttons can be selected”. Around 15 pupils with varying levels of disability have used the software and many models have already been produced.

3D design created by "eye-gaze" technology, used by students with disabilities supported by the charity Livability (pic: Livability)
3D design created by “eye-gaze” technology, used by students with disabilities supported by the charity Livability (pic: Livability)

The creators now hope that new funding can be found so that the software can be further developed and used by more young people.

I hope so.

More people with disabilities should – if they want to – be free to road test interesting existing and new technologies, trying out software in high street computer stores, for example, rather than being asked to leave them.

No one should suffer like this

Connor Sparrowhawk, who died a preventable death in a Southern Health NHS Foundation Trust unit.
Connor Sparrowhawk, who died a preventable death in a Southern Health NHS Foundation Trust unit.
Stephen Andrade-Martinez is detained in an inpatient unit 80 miles from his London home. He is pictured (right) with his brother Josh.
Stephen Andrade-Martinez is detained in an inpatient unit 80 miles from his London home. He is pictured (right) with his brother Josh.
Tianze Ni, from Fife, stuck in a Middlesborough inpatient unit miles from home.
Tianze Ni, from Fife, stuck in a Middlesborough inpatient unit miles from home.

It is now three years since the abuse inflicted on people with learning disabilities at Winterbourne View highlighted the desperate need to get people out of such institutional settings.

In those three years, we know of two people who have died in these kind of assessment and treatment units since then (Connor Sparrowhawk, pictured at the top of the page, and Stephanie Bincliffe). Many more – Tianze and Stephen (also pictured above) among them – are still being placed by health and social care authorities in such places.

The “abject failure” to move people out of these woeful environments is clear. The piece in today’s Guardian looks at this issue, including a report today by Sir Stephen Bubb, Winterbourne View – Time to Change and the momentum for change driven by families and campaigners.

Assessment and treatment centres are inappropriate institutions, modern day versions of the prison-like settings we thought we’d dismantled years ago – holding pens in which to warehouse some of society’s most vulnerable people.

Read that first sentence again – two people died (they had no life-threatening illnesses) in a clinical environment where they were placed for care, assessment and treatment – and ask how it is possible that we can let this happen?

Why “we”? Because of the collective responsibility: public and private sector funders enable these places to be created; health and social care providers run them; commissioners place people in them; politicians and policy makers seem unable to hold anyone to account for them; there is little mainstream interest media reporting in this area and the public – beyond shock at the odd high profile headline – is generally apathetic.

The fact that there have been two deaths in the three years since we’re meant to have eradicated these kinds of places is starkly made by Sara Ryan in today’s Guardian. She describes such units as “waste bins of life”.

Sara’s son Connor Sparrowhawk (aka Laughing Boy or LB) died a preventable death last year in a Southern Health NHS unit, and the widespread outrage that followed created the Justice for LB campaign with the related 107 Days drive, and draft disability rights legislation in LB’s name, the LB Bill.

It’s hoped that a green paper in February next year will reflect some elements of the bill.

Disability and human rights barrister Steve Broach, who is helping to draft the bill alongside Connor’s parents (Sara Ryan and Richard Huggins), Mark Neary and George Julian, says the project is using social media to galvanise a diverse community, including people with disabilities, professionals, families and academics. “We’re trying to crowdsource changes to the law – people are patronised and it’s wrongly assumed that disabled people and their families cannot understand their legal rights,” says Broach.

Kevin Healey, campaigner for autism rights who has supported three of the families mentioned in the piece today, says that people are effectively “penalised for having a learning disability or autism”. He says the successful campaigns to return people home are vital, but rare.

Healey adds: “It’s like we’re going back to the days of the 1940s when people with autism used to be institutionalised, but this is the 21st century.” Healey warns that where the authorities return people home, it is important to protect and preserve any new community-based packages of care amid the sweeping welfare cuts.

One mother, Leo Andrade-Martinez, told me of the son she is campaigning for (Stephen has been moved 80 miles away from home and restricted to a two-hour weekly visit from his parents) that “no one should suffer like this”.

Her words are horribly familiar to anyone interested in disability rights.

For more than 20 years – from 1993’s Mansell Report to the 2006 Our Health, Our Care, Our Say white paper, it’s been clear what “good looks like” when it comes to supporting people with learning disabilities. But still, seeing it in practice is the exception and not the rule.

You can read the full piece in The Guardian here.

Links for further reading:
* Petitions for Tianze Ni and Stephen Andrade-Martinez, both in units miles from their families. Website for campaigner Kevin Healey involved in the family campaigns.

* New Justice for LB website from where you can access different parts of the campaign and the latest updates, including news on the private members bill for disability rights

* The story of how the LB Bill is being shaped through crowdsourcing

Janet Carr: They used to say ‘they’re never likely to walk or talk’

Amazing, incredible, inspiring…overused words but I found myself unable to avoid using them when describing my meeting with the pioneering psychologist Janet Carr, who has just finished the world’s longest study (50 years) of people with Down’s syndrome. Carr’s life’s work has been a commitment to changing attitudes about learning disability, and in particular Down’s syndrome.

As I explain in an interview published in The Guardian today, Carr’s longitudinal study began with 54 babies born in the year to November 1964 and living with their families in a part of south-east England. Carr’s aim was to establish the children’s educational needs using intelligence tests such as pattern-matching. The research, which began when the babies were six weeks old, was conceived by the Medical Research Council psychiatric genetics research unit at London’s Maudsley Hospital. It was initially intended to last just 10 months but the young researcher wanted to look longer term and explore family interactions.

“I thought, as well as looking at how the little people are, I’d like to look at how it affected their families. It was widely accepted that having a baby with a disability meant that it would be a disaster, that families would break up. That’s what I expected to find,” she recalls. In fact Carr discovered that, while the babies’ development was slower than their non-disabled peers, families coped well as the children grew, with youngsters bonding and developing good relationships with their brothers and sisters.

You can read the rest of my interview with Janet Carr here.

Festival season: access a few more areas

Music festivals and accessibility: image from the Chase Park Festival 2013
Music festivals and accessibility: the Chase Park Festival 2013

Summer festival season is underway and in just over a week, a new event in the North East will help grow the burgeoning accessible live music scene.

Inclusivity and access are not (yet) par for the course at live arts venues and events (as my family and I have found out), but the concepts are at least becoming more commonplace at music festivals.

The Middlehaven Festival in Middlesborough on Saturday 23, run by care specialists Keiro, builds on the success of the Chase Park Festival in Gateshead (the Gateshead event was established by Paul Belk; Belk, who has used a wheelchair since his brain injury, was supported at the Keiro rehabilitation centre that lent the Chase Park festival its name).

Middlehaven offers level boardwalks and wheelchair access, specialist toilets, hoisting and changing facilities, a hearing loop and a sensory “chill out” area and on-site medical services.

The images here, taken from last year’s Chase Park Festival, give you a flavour of what to expect- and what other venues and events should aspire to. For more information, check the Middlehaven website and Attitude is Everything, which works with the live music sector to improve access for deaf and disabled people.

* This is the last Social Issue post till September as the blog takes a summer break.