The Social Issue’s on a summer break

As you may have spotted, I’m on a blogging break for July and August, but will be tweeting (@Saba_Salman) when I can and will definitely be back to full speed in early September.

Thanks v much to everyone who’s been following the blog, sharing the posts and suggesting topics and projects to cover.

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Disability, demonstration and debate: Jane Campbell

“The cabbage has a brain,” is, it’s safe to say, not the response that Jane Campbell’s prospective employers expected when they commented on her encyclopedic knowledge of social care during an interview for a new job.

That job, as founding executive chair of the Social Care Institute for Excellence in 2001, is just one of many high profile roles the 56-year-old cross bench peer (Baroness Jane Campbell of Surbiton, to give her the full title) has had in a career spanning some of the most pivotal moments in disability rights.

Campbell is one of the most influential figures in UK disability rights but there is still more than a hint of origins as a grassroots activist about her, as I explain in an interview for today’s Guardian.

For example, she recently resisted the temptation, she says, to join a protest she spotted against the government’s closure of the independent living fund (ILF) on her way into the House of Lords. The £320m programme that funds 18,000 disabled people’s community-based care was axed last month; Campbell, who campaigned for its creation 30 years ago, had spearheaded the fight to save it.

She is a determined speaker on how austerity measures and welfare reforms adversely affect disabled people. As she told the Lords in response to the recent Queen’s speech, “it doesn’t feel like a great time to be disabled”.

Those who are already the most marginalised in our communities risk being further left behind. This false economy, as Campbell last year suggested, means the government “risks sleepwalking towards the status of a systematic violator of these same rights”.

This is why, as Campbell told me, it is vital that disability be seen as a human rights issue: “If I can do anything in my life, it is to bring disability out of the medical model and dump it where it should be – right back in society.”

One recent success was to bring a private members bill to ensure that people with disabilities who are supported by councils will still get that support if they move to another local authority.

The full interview is here but, just for the record, this potted version of Campbell’s CV reflects why she has been awarded not one, but two, lifetime achievement awards (from human rights organization Liberty in 2009 and this week’s one from social justice thinktank Bevan Foundation), an MBE, a DBE and two honorary degrees:
June 2015-present: member, post-legislative scrutiny select committee, Equality Act 2010, disability provisions
2007-present: independent crossbench peer, House of Lords
2006-09: chair, disability committee, and commissioner, Equality and Human Rights Commission
2008-2014: co-chair, All Party Parliamentary Disability Group
2008-2013: member, House of Lords appointments commission
2010-2012: member, House of Lords joint committee on human rights
2009-2011: chair, Independent Living Scrutiny Group, Office for Disability Issues (ODI), DWP
2008-2012: chair, Advisory Group on Right to Control, ODI
2008-2009: member, standing commission on Carers
2006-2009: chair, Disability Committee, and commissioner, Equality and Human Rights Commission
2006-2007: chair of the Independent Living Review Expert Panel, ODI
2001-2005: executive chair, Social Care Institute for Excellence
2000-2007: commissioner, Disability Rights Commission
1996-2012: co-director (to 2000), then trustee, National Centre for Independent Living
1994-1996: independent consultant on direct payments
1991-1995: co-chair British Council of Disabled People
1988-1994: director of training, London Boroughs Disability Resource Team
1987-1988: principal disability advisor, London Borough of Hounslow
1986-1987: disability training development officer, London Boroughs Disability Resource Team
1984-1986: equal opportunities liaison officer, Greater London Council

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Arts festival uses digital tech for social inclusion

Participants promoting their festival. Photo: Stephen Candy

Participants promoting their festival. Photo: Stephen Candy

A few images here from an innovative digital arts festival due to take place this weekend (10-12 July). The interactive event, which I wrote about today for the Guardian’s online social care pages, will feature giant portraits of learning disabled people projected onto buildings, a game played with an accessible mapping app and an inclusive, high-tech design workshop to re-imagine a town centre.

Creating percussion sounds for the music element of the festival. Photo: Annalees Lim.

Creating percussion sounds for the music element of the festival. Photo: Annalees Lim.

Mixing music for the festival. Photo: Annalees Lim .

Mixing music for the festival. Photo: Annalees Lim .

SprungDigi crew member mixing SprungDigi theme song. Photo: Stephen Candy.

SprungDigi crew member mixing SprungDigi theme song. Photo: Stephen Candy.

People with learning disabilities will help stage the innovative art installations and music and dance performances that they have created alongside digital and community arts practitioners. The inaugural SprungDigi Festival in Horsham, West Sussex, runs from Friday until Sunday.

The name of the free event reflects the concept that digital technology and online activity can be a springboard to social inclusion. The aim is to ensure that people with learning disabilities are more visible and feel more connected to their local areas. Read the rest of the piece here and check this festival page for more information about the weekend.

Posted in Disability, Learning disability, Local government, media & communication, Mental health, Social care, Social exclusion, Uncategorized, Young people | Tagged , , , , | Leave a comment

Rocket science and reality: The Tale of Laughing Boy

The Tale of Laughing Boy from My Life My Choice on Vimeo.

This weekend, I watched a film that should never have had to be made, about a young man who should never have died, featuring people who should never have experienced what they’ve been through.

If you follow this blog regularly, you’ve probably already seen the powerful film, The Tale of Laughing Boy, which was released on Saturday.

If you haven’t seen it then, for the reasons stressed in my opening lines, please spare 15 minutes to watch it.

Better still, watch, imagine and act, as the film’s concluding message urges its viewers.

The film is about the life of Connor Sparrowhawk (aka Laughing Boy). Connor, who had autism, a learning disability and epilepsy, was 18 when he died just over two years ago in Slade House, an assessment and treatment unit run by Southern Health NHS Foundation Trust.

He drowned in the bath on 4 July 2013, an entirely preventable death, as proved by an independent report demanded by his family. I covered the family’s experience here and if you don’t know his mother Sara Ryan’s blog, these extracts published in the Guardian reflect a little of what the family has been through.

Two years after Connor died, the family is still waiting for answers, a police investigation is ongoing and the outrage over his death has led to a powerful campaign, Justice for LB. It has also driven proposals for a new bill to boost the rights of people with learning disabilities and their families (see also this brilliant gallery featuring artwork created as part of the campaign).

The Tale of Laughing Boy should be required viewing for – well, for everyone, actually.

The issues it raises touch not just families of people with learning disabilities or people with learning disabilities themselves. The film is relevant not simply to professionals who work in health and social care or to politicians and policy makers who focus on these areas. In fact, Connor’s story begs the question of how society values (or rather, undervalues) people with learning disabilities and how we, as a collective bunch of human(e) beings, can (and should) positively respond.

The film, produced by self-advocacy charity My Life My Choice and Oxford Digital Media paints a warm, affectionate picture of Connor from childhood to young adulthood. Interviews, photographs and home movies celebrate Connor’s life as well as demanding answers about his death. It is a short, clear, accessible, arresting film – warm, beautiful, funny, and moving.

Connor’s family and friends speak with searing honesty about about the impact he made on their lives, and about the difficulty in his support (which is what triggered his admission into the unit). The teenager emerges as an engaging, entertaining, popular young character with a love of humour and a passion for music and buses.

Inspiring and amusing anecdotes show how much loved Connor was and is by his parents, siblings, grandparents, friends and support staff; one of his brothers recalls Connor’s claim that their mother was breaching his human rights by getting him to do the washing up.

Rich, Connor’s stepfather, describes the proposed new bill that the Justice for LB movement has sparked.

Rich explains that the objective is “to change the way in which the law works…At the moment local authorities and the NHS and other providers can pretty much put people where they want, what our bill proposes is that you simply will not be able to do that you will have to take full regard of the individual’s desire and wishes into account before making them a placement in residential accomodation…the bill tries to at least ensure or encourage that the knowledge, the love, the affection, the care, the experience that families have isn’t ignored by providers and is a full part of the process”

As Connor’s mother Sara says, it is “shameful” that there is a need to campaign “to give a certain set of people the same rights as everybody else”. Her son’s death, she adds, was terrible, wasteful, careless and preventable.

I wasn’t able to attend the launch of the film but Kate at My Life My Choice was kind enough to ask two of the contributors to the film, Tyrone and Shane, both of whom have learning disabilities, for their thoughts so I could add them to this post. Tyrone said: “Connor was a happy person – always talking about buses. I feel sorry that he died and wish it didn’t happen.” He also said that “taking part in the filming was fun.” Shane just wanted to reiterate “It’s terrible that this happened.”

In the film, it is another My Life My Care trustee, Tommy, who makes a powerful statement of the obvious; someone with epilepsy should never have been left alone in the bath. He says simply: “It’s not rocket science”.

* You can read more here and follow the Justice for LB campaign on Twitter.

Posted in Disability, Health, Learning disability, Social care, Uncategorized, Young people | Tagged , , , , | 1 Comment

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:

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Social inclusion, sewing patterns and silver linings

Social inclusion: being "more busy" with people, places and projects is vital

Social inclusion: being “more busy” with people, places and projects is vital

“More busy”. This quote from Kelvin Burke of Rocket Artists reflects what people with learning disabilities need in order to be more included in society; people want to be busier with opportunities to do, make and see more things, to have more time to spend with people (incidentally, that’s people who hang out with you by choice and because they share your interests, not simply because they’re paid to support you).

Kelvin shared his words at a Tate Modern seminar on inclusive arts that I was involved in earlier this week. The event’s title – “a research discussion bringing together practitioners and academics to explore issues around inclusive arts practice” – doesn’t do it full justice.

This engaging, creative, interactive, collaborative and fun event (yes, fun! There was golden ink! Stickers! Sewing patterns! And cake – both drawn and real!) encouraged participants (academics as well as artists and performers with learning disabilities and without) to explore the barriers to social inclusion, within the context of the arts sector.

People on the table I chaired talked about what stopped them from being more involved in society as well as what needs to happen to change that.

Although these issues are something I’ve looked at before (see, this piece or an opinion piece here about the unequal treatment of learning disabled people), until Monday I’d not explored them with marker pens, golden ink, coloured stickers, gargantuan Post-it notes, A4 size speech bubbles and dressmaking patterns.

But there’s a first time for everything (and now I only ever want to write in golden ink).

More seriously, the method and materials were necessary if the discussion about access and inclusion was to be accessible and inclusive, so everyone had an equal opportunity to contribute thoughts, words, doodles and designs.

I can’t faithfully describe all the challenges and solutions identified in a room buzzing with the ideas of around 50 people, but a few ideas are captured in the images on this page. (unfortunately I wasn’t able to take a shot of the “Bolloxometer” designed, I believe, to slice through meaningless rhetoric purveyed by those in authority, but I’m first in the queue for this should it ever go into production).

Segment of a sewing pattern for a coat, decorated with hopes and solutions for the future for people with learning disabilities

Segment of a sewing pattern for a coat, decorated with hopes and solutions for the future for people with learning disabilities

People with learning disabilities should be seen as people first, with potential and talents, rather than being defined by their support needs

Another segment of the coat pattern, reflecting how people with learning disabilities should be seen as people first, rather than being defined by their support needs

One idea to help celebrate differences...

One idea to help celebrate differences…

Time was, however, a big theme for discussion. Those who work with people who have learning disabilities said they wanted more time for sustainable projects (rather than be caught in commissioners’ and grant-makers’ short-term funding cycles). People with learning disabilities said they wanted more time to do things they enjoy, as Kelvin said.

Words like “equality”, “access”, “value” and “listen” cropped up a lot. As did the importance of celebrating differences and valuing people for what they can do, not defining them by what they can’t. While the challenge of funding and cuts (both to social care and the arts sector) was a major concern, people were generally unwilling to focus on money alone as a problem or solution, when so much rests on changing the perception of people with learning disabilities.

Barriers to people with learning disabilities being included in society

Barriers to people with learning disabilities being included in society

Rocket Artists performed towards the end of the day, captured in this lovely shot shared on Twitter by Brighton arts organisation Phoenix:

The event also included the launch of a thought-provoking and beautifully produced new book, Inclusive Arts Practice. Authored by the University of Brighton’s Alice Fox (also artistic director of Rocket Artists) and Hannah Macpherson, it was created through interviews with and guidance from learning-disabled and non-learning-disabled artists. The book looks at inclusive arts – defined as “creative collaborations between leaning disabled and non-learning-disabled artists” – and its “socially transformative potential for collaborators and audiences”.

It addresses difficult questions, such as the differences between art therapy, occupational therapy and inclusive arts and clearly sets out the practical steps to create more collaborative art. The book acknowledges the fact that the term inclusive arts “presupposes exclusion” and asks how such collaborations between artists of different abilities can have real, cultural value (something I’ve blogged about before and which the Creative Minds project is exploring).

The book makes a persuasive case for everyone to have a cultural life in their communities; Southbank Centre director Jude Kelly, for example, comments in the book on how “we believe in cultural rights as a profound part of human rights”. Creative collaborations with the use of time, trust, skills and choice, are presented as “a force for societal good”:

“People with learning disabilities tend to be undervalued members of society, are much more likely to live in poverty, and are much more likely to suffer hate crime than their non-disabled counterparts. It is estimated that around 1.5 million people in the UK have a learning disability and over 3,000 of these people have spent over a year in an ‘assessment centre’, often a long way from family, and which is not designed to be a permanent residence. Many people with learning disabilities do not have access to any regular creative leisure activity outside their residential environment, despite the proven benefits of such activities for health, well-being and resilience…”

Inclusive arts can make audiences “feel differently about the people whose work they see and they can feel differently about themselves”, that is one powerful message in Inclusive Arts Practice.

Which is why the inclusive arts movement has an important place when it comes to equality for people with a learning disability. “We want greater powers to be seen, to vote, to be included, have the same opportunities in social life, education and employment as everyone else,” as campaigner Gary Bourlet says, or as the rights set out in the campaigning LB Bill show).

As for the sewing pattern that everyone contributed to on the day, one stylish spark made the beautiful observation that the final garment, emblazoned with words and images setting out some ways to break down social barriers, should have a sliver lining; the team from Brighton now plans to make the dream coat a real life action mac.

I can’t wait to see it.

Posted in Cuts, Disability, Learning disability, media & communication, Music & arts, Social care, Social exclusion, Uncategorized | Tagged , , | Leave a comment

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.

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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

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Employers’ public health role

Working-age ill-health costs the UK economy an annual £100bn, and in a piece for the Guardian online, I give a snapshot of what some employers are doing to improve the health of their staff.

It might be easy to dismiss lunchtime yoga sessions or in-house physio clinics as optional extras (or a “perk”) but the stats on workplace illness suggests a focus on wellbeing makes economic sense. More days are lost through staff sickness in the NHS than elsewhere in the public sector (according to the government’s 2009 Boorman Report) and sick leave costs the health service £1.7bn a year.

Employers are starting to recognise their public health role; almost 400 organisations have, according to latest figures, pledged support for the Department of Health’s public health “responsibility deal”.

You can read the full piece, part of a supplement on physiotherapy, here.

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Cutting employment support for learning disabled people is a false economy

Richard Ward has barely taken a day off sick since he started working 15 years ago. His friendly nature and keen eye for detail suit his role at a Boots store in Coventry, date-checking food, stacking shelves and helping customers find what they want. Ward, 33, says: “I like earning my own money, getting on well with the staff, seeing different people every day and it gets me out of the house.” Ward earns £600 a month, just over the national minimum wage.

Ward lives with his parents in Walsgrave, Coventry, and was referred to a local jobs support service by his special school; mainstream job agencies and government-run employment schemes would consider him unemployable. His mother Jane says he would be on benefits without the specialist job advice, coaching and long-term support from Coventry city council’s The Employment Support Service (TESS) for people with learning disabilities or mental health issues.

As I explain in the Guardian, while the general unemployment rate is falling, the number of out of work adults with severe learning disabilities or mental health issues who don’t have a job is on the rise. Last year, only 6.8% of learning disabled people using social care were in work compared with 7% in 2012-13. The corresponding rate for people using acute mental health services was 7.1% in 2014, compared with 7.7% the previous year.

Learning disability is not on most politicians’ radars, despite people who have learning disabilities, or who have someone with a learning disability in their immediate family, making up 10% of the electorate. A recent poll of 100 MPs by social care provider Dimensions suggests 60% do not believe that learning disabled people can be supported into employment.

However, Ward’s job is under threat, along with those of another 100 people TESS currently supports to maintain employment and the 30 it helps annually into new jobs. The Labour-run council has earmarked the nationally acclaimed 22-year-old service for closure, a victim of public sector cuts. Its future after this December is unclear.

Coventry is not unique; supported employment is a Cinderella service, not a local government statutory requirement. A 2011 poll by the British Association for Supported Employment (BASE) of 50 of its members found half face council funding cuts of at least 15% and a quarter fear 50% to 100% cuts.

The situation in Coventry has sparked worries for families of younger disabled people elsewhere. They warn that supported employment cuts are at odds with special educational needs and disability reforms aimed at raising the aspirations of future generations.

In a joint comment Sherann Hillman co-chair of the National Network of Parent Carer Forums (NNPCF) and Sue North from Contact a Family said: “Parent carers of young people with disabilities and special educational needs say fear for their child’s future is one of their top concerns. This is because young people with special educational needs and disability are less likely to find employment and live independently – and face other additional barriers as they grow up. Any threats to provisions such as supported employment schemes, will inevitably compound these fears and worries.

People TESS supports spoke in its defence at a public meeting last week organised by local unions. Among them was Hayley Archer, who has a learning disability. Her mother, Suzanne, stresses the wider impact of supported employment must be recognised: “People like Hayley are changing society’s attitudes by having a role in the workplace and by working alongside people without learning disabilities.”

Archer herself, an administrative apprentice at the council, has a simple request for her future: “I really want to keep working.”

You can read the full piece here.

Posted in Cuts, Disability, Employment, Learning disability, Local government, Uncategorized | Tagged , , , , , , | Leave a comment