Category Archives: Community

Potential, not prejudice: photo project challenges disability stereotypes

Mark, on his wedding day
Mark, on his wedding day

When newlywed Tessa got back to the hotel with husband Mark after their wedding, she found he’d arranged a surprise – he had scattered flowers and balloons around the room.

As Tessa recalls in a new project and book, Great Interactions by photographer Polly Braden: “I kept laughing at Mark – he was trying to throw the flowers around me…He’s happy now he’s married. We love each other. Being married doesn’t feel any different. That’s it. It makes me feel happy. Mark’s already got his name, so his wife will be Tessa Jane Ahrens, that’s mine and Mark’s choice. I used to be Warhurst – not anymore now. When my bus pass has run out they’re going to change my name on it.”

Tessa and Mark on their wedding day, Tring Church, Hertfordshire
Tessa and Mark on their wedding day, Tring Church, Hertfordshire

The couple’s story is one of many documented in Braden’s book and exhibition. The project aims to capture the daily lives of people with learning disabilities, from everyday interactions to landmark events like Mark and Tessa’s wedding. The book will be published next month and the images will also be featured in an exhibition at the National Media Museum, Bradford.

Polly Braden spent two years working with social care charity MacIntyre and the people it supports across the UK. The resulting work, refreshingly, offers a glimpse of the diverse, individual, ordinary lives of people with learning disabilities – around 1.5m people in the UK have a learning disability, but the population, usually seen as a homogeneous mass or single statistic, is defined by needs and lack of ability, as opposed to current or future potential.

Braden’s project also comes at a time when public sector funding cuts threaten vital support services and, as I’ve written before, families fear that the long-promised improvements to the care of people with learning disabilities may never happen.

Caroline and David, Holmewood Community Centre
Caroline and David, Holmewood Community Centre

Braden’s work does not gloss over the problems, but offers a different perspective. She explains: “The people I have met all have stories about the barriers, prejudice and ignorance they and their loved ones have faced in simply trying to have fair opportunities in life. But their stories are also inspiring and filled with heart-warming moments which would have seemed impossible to imagine earlier in their lives – from being active and using public transport to graduating from high school and getting married.”

Aja with Farah, MacIntyre No Limits, Oxfordshire
Aja with Farah, at an Oxfordshire support scheme
Raymond and Peter, Christmas Party 2014, Civic Hall, Ellesmere Port, Cheshire
Raymond and Peter, Christmas Party 2014, Civic Hall, Ellesmere Port, Cheshire

The photographer’s aim was to try to take photos about support “at the best it can be, but not to gloss over the profound problems in the provision of care and support and the challenges around this as well”. The project tries to look at what can be achieved for people when they are given good support, “and to talk about what happens when they are not”.

The aim of the project is “to challenge out-dated, institutionalised images and improve public awareness by recognising and highlighting the every day interactions and life changing experience of people with a learning disability”. It also focuses on social care professionals’ attitudes towards and relationship with the people they support. As one support worker, Raul, told Braden of the person he works with: “Mikey needs this kind of support: he needs to be around people who know and understand him, who are willing to go a step further and discover the bright and amazing person he is.”

Becky, Stephanie and Lesley, dance and movement class, St Elphin’s community centre
Becky, Stephanie and Lesley, dance and movement class, St Elphin’s community centre
Sarah and Zoe, Great Holm Coffee Shop, Milton Keynes
Sarah and Zoe, Great Holm Coffee Shop, Milton Keynes
Lucie, Milton Keynes Sports Centre
Lucie, Milton Keynes Sports Centre
Charles with Callum, MacIntyre School, Wingrave, Buckinghamshire
Charles with Callum, MacIntyre School, Wingrave, Buckinghamshire

* All photographs by Polly Braden, the book Great Interactions is out in March and the six-week exhibition at the National Media Museum, Bradford, opens on 27 February.
* To mark the book’s launch, the National Media Museum and MacIntyre are asking people to share photos of “everyday moments that make life matter” on Instagram, using the hashtag #IamMe – see the website for more information
* For more reading, see this Guardian feature published at the weekend..

This blog was amended on Monday 29 February to include the Great Interactions Live website

How ballet can break down barriers

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

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

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

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

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

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

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

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

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

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

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

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

Homes, hospitals, ambition and actuality

Claire Dyer's family campaigned for her release from an inpatient unit 250 miles away (photo: Cath Dyer)
Claire Dyer’s family campaigned for her release from an inpatient unit 250 miles away. Claire features in today’s Guardian piece (thanks to Cath Dyer for the photo of Claire, who loves both music and Christmas)
Four years after the abuse of people with learning disabilities at Winterbourne View (and 30 years after the start of care in the community and 20 years after the influential Mansell Report), NHS England recently unveiled a £45m plan to move people out of institutional care and back into communities. “Homes not hospitals”, is the laudable vision.

This is where grand ambition contrasts with grim actuality, as I explain in a piece in today’s Guardian.

A report leaked to the BBC and sparked by the preventable death of 18-year-old Connor Sparrowhawk in a Southern Health Trust inpatient unit, revealed that the trust failed to investigate some 1,000 deaths in its care over a four year period.

Then yesterday, the Learning Disability Census Report 2015 from the Health and Social Care Information Centre revealed there 3,000 people in inpatient units – 3,500 if you count those “unreported” in the figures (more on this here from Mencap and the Challenging Behaviour Foundation, and the HSCIC explains the discrepancy under its editors’ note number eight here).

Déjà vu? In 2013, according to the HSCIC, there were also around 3,000 people in inpatient units (in fact half those in units today, were also there for the 2013 headcount). And a previous £2.86m government-funded improvement programme from the Local Government Association and NHS England tried but failed to move everyone out of such units by 1 June 2014.

The census, established in response to the abuse at Winterbourne View, also shows the average length of patients’ stay is five years, there is heavy use of antipsychotic medication (almost three-quarters of people – despite the fact that less than a third have a diagnosed psychotic disorder) and more than half self-harm, have accidents or suffer assault, restraint or seclusion. Around a fifth of all inpatients are at least 100km from home.

Reading these stark facts would lead most of us to conclude that if you have a learning disability, you’re less likely to be cared for properly in life, unlikely to have your premature death investigated thoroughly – but if you’re lucky, you might be included in a census (depending on the data collection methodology etc etc).

I’m more pragmatic than negative. My sister, Raana, who has a learning disability, leads a busy, active life where her choice is central to her daily life. There are many organisations out there doing great stuff. I’ve met people who have moved from institutions into supported housing in towns and cities, with the help of truly brilliant, hardworking care staff. I’ve spoken to families who feel involved in shaping the care of their son, daughter or sibling, some with very complex needs. I’ve read – and written – reports outlining good practice in ensuring people get out of these places. While there’s still a postcode lottery at play, “we know what good looks like”, as stressed by many social care experts I speak to.

So as I began writing today’s Guardian piece, I’d expected a narrative of cautious optimism. As I came to finishing it, the Mazars report was leaked and new figures showed little change in the number of people in inpatient units, hence the headline above this post.

The report into Southern Health by auditors Mazars – which as I write, is still not published, despite making headlines and being debated in parliament – has renewed concerns over institutional disablism, led to calls for a national inquiry and, as this piece by Andy McNicoll underlines, provoked widespread criticism over the response of the trust and its chief executive (for links to some powerful blogging and commentary, search Twitter for #mazars or #JusticeforLB).

Katherine Runswick-Cole, senior research fellow at Manchester Metroplitan University’s research institute for health and social change, suggests that until the dehumanisation of people with learning disabilities ends, inadequate care – irrespective of care setting – may linger (related issues include, for example, a hospital listing a patient’s learning disability among reasons for sticking a “do not resuscitate” order on his file).

Recent cases in supported living and residential care – non-institutional environments – reflect this concern.

In January, Thomas Rawnsley’s family will attend a pre-inquest meeting into his death. The 20-year-old, who had Down’s syndrome and autism, was taken to hospital from a residential care home in Sheffield earlier this year, but died two days later.

His mother, Paula, says: “Thomas had great empathy and compassion, he always wanted to make people laugh. If people had taken time to get to know him they would’ve found that out.”

Robin Kitt Callender, a care home resident 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 in March ruled that she died from natural causes contributed to by neglect, with failings by her GP and hospital staff. Robin’s sister Karen has since launched the Casualties of Care campaign for better rights for people and families.

Dismissive attitudes towards people with learning disabilities extend to their families. As Deborah Coles, director of Inquest, has said, the Mazars report only came about “because of the tireless fight for the truth by the family of Connor Sparrowhawk”.

Meanwhile, back with the grand vision – well meaning and welcome as it is – NHS England says it is working closely with regulator the Care Quality Commission to prevent any new assessment and treatment institutions from being created. But in yet more ambition vs. actuality, the Public Accounts Committee has just criticised the CQC for being ineffective.

Connor Sparrowhawk’s mother Sara Ryan, a senior researcher and autism specialist at Oxford University’s Nuffield department of primary care health sciences, says that the Mazars report “confirms that learning disabled people don’t count in life or death” (see more on this on Sara’s blog). And this post by Chris Hatton suggests some “required reading for anyone wanting to understand the issues involved in premature deaths of people with learning disabilities”.

Hard to disagree with the conclusion of Katherine Runswick-Cole who said when I interviewed her, “the pattern is abuse, inquiry, report, repeat”.

Tailor made theatre for an overlooked audience

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

People with learning disabilities are not scroungers or superheroes

The MBE recently won by Shaun Webster is, he says “two fingers” to the bullying colleagues who tormented him when he worked in a warehouse some years ago.

You can’t disagree with the 43-year-old’s use of frank language – his deeply unpleasant workmates once used sticky tape to bind Webster, who has a learning disability, and stuffed a rag in his mouth. This was done “as a joke”, he recalls in an interview I did for today’s Guardian. Little wonder he has devoted his life since then to fighting for inclusion and equality.

As explained in today’s piece, the international project worker for Leeds-based human rights charity Change is a sought-after speaker and trainer in the UK and overseas. His work includes advising government departments about inclusive employment, promoting access to sex and health education for learning disabled people and recent visits to Thailand and Croatia to train health, social care and charity professionals about independent living and disability rights.

Shaun talks passionately and persuasively about issues like employment rights and independent living for people with learning disabilities, making the point (usually missed by policy makers and politicians) that the two issues must be seen together; earning your own money and having a role and responsibility supports independence.

Shaun’s current work involves a partnership with children’s charity Lumos, supporting young people to leave institutions and gain independence, choice and control. Linked to that piece of work is the report Shaun wrote, Leaving Institutions, a really great example of a publication written with a clear focus on people (not targets or statistics, or a homogeneous mass) by authors who truly know about and have experience of what they’re talking about.

The entire interview can be read here and the film below is worth a watch too:

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.

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.’

Eyesore to eyecatching: art transforms boarded up London shops

Shoe shop: an empty unit in Streatham, south London, gets a makeover.
Shoe shop: an empty unit in Streatham, south London, gets a makeover.

I usually run a mile from any sniff of a town or city rebranding (anyone remember “Staines-upon-Thames” or indeed “Proud to be Slough“?).

But I’m interested in the bold focus on street art and local artists in the drive to return a sliver of London to its retail glory – “Streatham – the West End of South London” no less.

Streatham architects and design company, Beep Studio, is collaborating with the local Business Improvement District, InStreatham, to create a “voids trail” that reflects the area’s local personalities “in a bid to encourage more people to explore Streatham High Road”.

The campaign features artwork on shop fronts inspired by seven famous celebrities who lived in Streatham – shoppers will explore the area’s shops via the trail, visiting each unit and stamping their trail maps to show they have visited the shop.

No prizes for guessing which South London-born model inspired the vertiginous platform depicted on one empty front.

I’ve fond memories of the longest high street in Europe (Streatham High Road), up the road from my former home in Brixton – oh, sorry, of course I mean “Brixton Village”.

Anyway, in terms of the Streatham campaign, I like the idea of the installations and light displays by local artists that accompany the campaign. This all coincides with Small Business Saturday, a non-political drive to encourage people to shop locally.

The Streatham shopfront trail launches on Saturday along with the Christmas light switch on.