Tag Archives: disability

Storytelling for people with learning disabilities: ‘We just natter away’

Lisa Johnson of the writing group Story Balloons (pic: Jonathan Raimondi)
Lisa Johnson of the writing group Story Balloons (pic: Jonathan Raimondi)
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Lisa Johnson is a writer. The 30-year-old from Sheffield recently had a book published, a collection of poems, songs and stories put together with fellow authors from her writing collective. Today she will take part in a workshop in her home city, explaining the creative process and encouraging others to write.

She says of Story Balloons, her weekly writing group: “It is something I look forward to.” Uptown Boy, her poem about love, she adds, makes her feel “very happy”. “I always wanted to write,’ she says, adding that writing has changed her: “I feel more confident, proud of what I’ve achieved.”

Story Balloons helps counter stereotypes and improve confidence, and has led to a published book – read more in my piece in the Guardian

Jon Snow: simplify news to encourage voting

Shanna Lau discusses voting and accessibility with Channel 4 news anchor Jon Snow
Shanna interviews Channel 4 news anchor Jon Snow about current affairs, voting and accessibility

News, current affairs and politics are inaccessible to people with learning disabilities, as campaigner Gary Bourlet recently told me.

If it is rare to see learning disabled people interviewed or mentioned in the mainstream media (unless they’re involved in a care scandal), then it is completely unheard of to see someone with a learning disability conducting an interview.

Which is why I’m posting these images of Shanna Lau and Jermaine Williams who visited Channel 4 last month (to coincide with the local and European elections) to interview Jon Snow. The news anchor talked about accessibility in the news and voting and their interview is published today in the bi-monthly Easy News, the first accessible news magazine for people with learning disabilities which is supported by United Response.

Shanna Lau and  Jermaine Williams at Channel 4 news
Shanna Lau and Jermaine Williams at Channel 4 news

Shanna and Jermaine are part of the team that produces the magazine; launched last year, it uses simple words and images to create easy to explain big news stories and help people engage with current affairs and politics.Stories include the death of Nelson Mandela, the Winter Olympics and Paralympics and the 2014 Budget. By the sixth edition, 3,272 people had downloaded it – 250 per cent over target. According to United Response, 90 per cent of readers say it is easier to understand than other news sources while 78 per cent feel politics is now relevant to their lives, compared to 31 per cent a year previously.

L-R, Shanna Lau, Jon Snow and Jermaine Williams at Channel 4
L-R, Shanna Lau, Jon Snow and Jermaine Williams at Channel 4

Jon Snow told Easy News: “I think sometimes [news is] happening in places in the world that [people] have never heard of…And it’s very difficult to explain to people in a short space of time – because you only have a very short time in the news – it’s very difficult to give them all the facts. And sometimes you need a lot of facts to understand what a story is all about.

“I certainly think that [news can help people to vote]. If you are able to simplify it, which we very often do not, we assume a level of understanding which often isn’t out there. But I think if you can simplify it, it will make it very much easier for people to vote.”

An easy read version of the full interview, which was set up by United Response with help from disability campaigner, Kaliya Franklin, is in the ninth edition of Easy News published today. To download the latest edition of Easy News and to sign up for future editions, go to the United Response website.

We need to listen to the quieter voices

Weaving, Raana Salman
Weaving, Raana Salman

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Colour, Connor Sparrowhawk
Colour, Connor Sparrowhawk

Why is it OK for politicians to ignore people with learning disabilities?

More than one million people with learning disabilities are eligible to vote – so why are they ignored by politicians?

My interview with Gary Bourlet in today’s Guardian explains how the veteran disability campaigner wants to give people like himself, with learning disabilities, a greater voice and presence so they feature in places other than “secret footage on Panorama”, referring to Winterbourne View, where the abuse of patients with learning disabilities was exposed by the BBC in 2011. To this end, he has set up People First England, to encourage adults with learning disabilities, rather than care professionals, to participate in politics and appear on TV and radio discussing stories that affect them.

“We want people speaking for themselves about issues that concern them, rather than the professionals,” he says. “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.” Bourlet, 55, has launched the user-led charity with disability rights activist Kaliya Franklin.

You can read the rest of the piece here while my post from yesterday adds some more context to Bourlet’s message.

Investigation into bullying at special school sparks questions for Winterbourne improvement scheme

Fresh questions are being asked about the government’s beleaguered post-Winterbourne drive to improve care for learning disabled people. An investigation is underway into “bullying accusations” at a special school run by a charity whose chief executive is trying to reinvigorate the flagging £2.86m government improvement scheme.

Bill Mumford, chief executive of MacIntyre which runs Womaston School and Children’s Home in Wales, offered to stand down as director of the Winterbourne improvement programme after allegations of mistreatment at Womaston. The government programme launched after the abuse of learning disabled patients at the Winterbourne View privately run unit in south Gloucestershire, abuse that was exposed by BBC’s Panorama in 2011. It aims to move individuals out of institutional, large-scale, long-stay units and into community-based accommodation.

Concerns about the behaviour of some staff towards children at MacIntyre’s specialist residential service were reported by a member of staff to the school principal in March and police and social services are investigating the claims. The school, home to students aged aged 10-19 with autism, complex behavioural needs and learning disabilities, will close in July with the young people moved to alternative placements. Staff have been suspended, other staff drafted in and, says MacIntyre in a statement, “the alleged behaviours are not occurring in the service now”.

The investigation into Womaston is expected to last several months and there are no more details about what the allegations involve. A BBC online story refers to “physical abuse”, a statement from MacIntyre describes “concerns” about the “behaviour of some other staff members” while a personal statement from Mumford mentions “a small group of my staff…suspended following accusations of bullying”.

The incident has sparked fresh criticism of the Winterbourne programme run jointly by the Local Government Association and NHS England. It aimed to move everyone out of such assessment and treatment units by 1 June 2014 but after little progress (3,250 people with learning disabilities and autism are still in private or NHS-run settings like Winterbourne View), its previous heads left and Mumford took over in January, on secondment from MacIntyre. New NHS figures show only 256 out of 2,615 in-patitents with learning disabilities or autism have dates for transfer into community settings and more are being admitted to NHS settings than moved out.

The death of Connor Sparrowhawk recently reignited debate about the use of such units that cost around £3,500 per person per week and leave people at serious risk of neglect and abuse.

Mumford has issued a personal statement “re the investigation at MacIntyre and my continuing role in support of the Winterbourne prog” (that’s a statement taken from Twitter). In it, he accepts concerns that while he is charged with a national role to improve the care and support of learning disabled people, employees of the organisation he presides over were carrying out exactly kind of behaviour he’s trying to stamp out. He also addresses the fact the drive has been less than successful.

He says in his statement (the square brackets are mine): “It is a very real concern to me and the [Winterbourne improvement programme] partners that the trauma experienced by individuals and families at Winterbourne View and elsewhere should not be exacerbated by the thought that the person responsible for the programme [is] being tainted with serious problems in his own organisation. Indeed it is the unacceptable stories of individuals and families that motivate and challenge us all to step up and do better. Therefore my second decision was to contact the Joint Improvement Partners, including personal phone calls to the representatives of people with learning disabilities and families, to inform them of the situation and offered to voluntarily step down. This couldn’t come at a worse time for the programme partners as it is well know[n] that complexity of achieving the original concordat commitments has been a struggle.”

The MacIntyre chief executive adds that the charity took immediate action: “There has been no cover up, no prior issues of this nature have been raised before and the families and placing local authorities and alerting member of staff are all completely satisfied with MacIntyre’s actions to date. Therefore MacIntyre is dealing with a very serious situation exactly as they should – it is an example of how things should happen and maybe this is an important lesson for the programme to share.”

While the investigation by Powys social services and police continues, Mumford says he is “not only restricted about what I can say but actually what I know. However as soon as it is completed I will share what we have learnt regardless of how painful that might be.”

Discussion (so far mainly on social media) involves support for Mumford and the Winterbourne programme’s aims as well as criticism about why a statement was only made public this morning and why there was not more immediate public transparency after the claims were lodged with the relevant authorities.

*This post was updated this evening in an attempt to clarify “bullying accusations” and add figures and links relating to the number of in-patients with learning disabilities.

Raana, a real bread maker

Today is the last day of Real Bread Maker Week, not too high profile as far as awareness weeks go, but it seemed an opportune moment to share a one minute video of the best real bread maker I know – my sister Raana.

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Raana works in the Lantern Bakery at the Camphill community in Hampshire where she lives. You can see and hear her and the other bakers in action in this audio slideshow I did for the Guardian. The video was put together last year as a little token of sunshine for family and friends after we did the slideshow, but following in-depth research and consultation (I asked Raana and our parents), we decided it would be fun to post it here.

Spliced together with not much time (but a lot of warmth and a fair sprinkling of my sister’s sense of humour), we hope it leaves you with at least one of four things:
1. A clear impression that my talents do not lie in shooting video
2. An understanding that my sister – and her fellow bakers – are damn good at what they do (and why shouldn’t they be?)
3. A smile
4. A hunger for (organic, wholesome, additive-free, made with skill) freshly baked bread

The bread maker week that ends today, run by the food and farming charity Sustain, champions “real” bakers’ “rightful place at the hearts of our local communities” and encourages people bake or buy real bread from local, independent bakeries. Just like my sister’s (she bakes a mean chocolate brownie too; if you’re passing by Ringwood, go taste…).

Charity helpline supports abuse victims with learning disabilities

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

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

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

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

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

Indignation and initiative vs institutional inertia

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This is a post that originally appeared on the #107days of action campaign site, raising awareness about the death of Connor Sparrowhawk who died a preventable death in specialist NHS unit last year:

Imagine if you had £3,500 a week to run a campaign, consider the awareness you could raise with even a tenth of that.

Now multiply £3,500 – the average weekly cost of a place at an assessment and treatment unit (ATU) – by 3,250 – the number of learning disabled people in such units. That’s an indicator of the costs involved in using controversial Winterbourne View-style settings.

Just over a year ago, 18-year-old Connor Sparrowhawk, aka Laughing Boy or LB, was admitted to a Southern Health NHS Trust ATU where he died an avoidable death 107 days later.

In contrast to the vast amounts spent by commissioners on places like the one where LB died, the #JusticeforLB campaign sparked by his death is ‘funded’ solely by goodwill. No PR team crafting on-message missives, no policy wonks collating information, no consultants advising on publicity.

#107days of action began on Wednesday 19 March, a year to the day Connor went into Slade House, and continues until the first anniversary of his death, Friday 4 July 2014. Half the aim – and I’ll come to the other half at the end of this post – is to “inspire, collate and share positive actions being taken to support #JusticeforLB and all young dudes”. The goal is to capture the “energy, support and outrage” ignited by LB’s death.This post, around halfway through #107days and written from the perspective of having reported on #JusticeforLB at the start of the campaign, looks at what’s been achieved so far.

I’m not describing the “abject failure” of progress to rid social care of Winterbourne-style settings – care minister Norman Lamb’s words – the sort of apologies for care where compassion is often as absent as any actual assessment or treatment. Nor do I write about the errors at Southern (you can read here about the enforcement action from health regulators after a string of failures). I want to explain, from my interested observer’s standpoint, the impact of #107days and what might set it apart from other awareness drives.

It’s a timely moment to do this. It is now three years since Winterbourne, less than a week after Panorama yet again highlighted abuse and neglect in care homes and a few days since new information on the use of restraint and medication for people in units like LB’s. The campaign reflects not only the importance of #JusticeforLB, but also an unmet need to finally change attitudes towards vulnerable people (and it’s not as if we don’t know what “good care” looks like).

There is a palpable sense that the #107days campaign is different. Talking to journalists, families, activists, academics, bloggers and social care providers, the word “campaign” doesn’t adequately define #107days. It’s an, organic, evolving movement for change, a collaborative wave of effort involving a remarkably diverse range of folk including families, carers, people with learning disabilities, advocates, academics and learning disability nurses.

It’s worth noting the campaign’s global reach. LB’s bus postcard has been pictured all over the UK and as far away as Canada, America, Ireland, France, Majorca and São Paulo. LB has touched a bus driver in Vancouver and brownies in New Zealand.

Because of the blog run by Connor’s mother Sara Ryan (launched long before his death), LB and his family are not mere statistics in a report or anonymised case study “victims” in yet another care scandal. Instead we have Connor: a son, brother, nephew, friend, schoolmate, neighbour – and much more – deprived of his potential. We forget neither his face and personality nor the honest grief of a family facing “a black hole of unspeakable and immeasurable and incomprehensible pain”.

Yet while anger and angst has sparked and continues to fan #107days, the overwhelming atmosphere is optimistic. There is the sense that outrage, can should and will force action (and it’s worth mentioning, as #JusticeforLB supporters have stressed, exposing bad care begs a focus on good care – lest we forget and tar all professional carers with the same apathetic brush).

Both in its irreverent attitude and wide-ranging activity, this is no orthodox campaign. It is human and accessible because of its eclectic and inclusive nature (see, for example, Change People’s easy read version of the report into Connor’s death). And at the heart of the campaign lie concrete demands. In its bottom-up, social media-driven, grassroots approach and dogged determination, #107days has a hint of the Spartacus campaign against welfare cuts (Spartacus activist Bendy Girl is supporting #JusticeforLB through her work with the newly formed People First England).

As for impact so far, daily blogposts have attracted over 25,000 hits with visitors from 63 countries. There have been 7,000 or so tweets (which pre-date #107days) 1,380 followers, the #justiceforLB hashtag has been used more than 3,560 times and the #107days hashtag more than 2,000 times in the last month (thanks to George Julian for the number crunching). So far, the total amount raised for Connor’s family’s legal bills is around £10,000.

I can’t list each #107day but suffice it to say that the exhaustive activities and analysis so far include creative and sporting achievements highlighting the campaign as well as education-based events (or as Sara described progress on only Day 6 of #107: “Tiny, big, colourful, grey, staid, chunky, smooth, uncomfortable, funny, powerful, mundane, everyday, extraordinary, awkward, shocking, fun, definitely not fun, political, politically incorrect, simple, random, harrowing, personal, in your face, committed, joyful, loud, almost forgettable, colourful and whatever events”).

Along with blogs, beach art and buses in Connor’s name, there’s an LB truck, the tale of two villages’ awareness-raising, a hair-raising homage, autobiographical posts about autism, siblings’ stories, sporting activities, and lectures. And patchwork, postcards, pencil cases, paddling (by a 15-year-old rower) and petition-style letters (open to signatures).

It’s worth noting that while learning disability should be but isn’t a mainstream media issue, there have been pieces in the Guardian and Daily Telegraph plus important coverage on Radio 4 , BBC Oxford and in the specialist press. BBC Radio Oxford‘s Phil Gayle and team have followed developments relentlessly and Sting Radio produced an uplifting show on the first day of the campaign. While some of this coverage pre-dates #107days, it reflects how media attention has been captured solely thanks to the efforts of Connor’s family and supporters (links to other coverage are on Sara’s blog).

As for reaching the key figures who could help make the changes #107days wants, the campaign has had contact with health secretary Jeremy Hunt, care minister Norman Lamb, chief inspector of adult social care Andrea Sutcliffe and Winterbourne improvement programme director Bill Mumford, care provider organisations and staff.

Earlier, I described the first half of #107days’ aims to “inspire, collate and share positive actions” and capture the “energy, support and outrage” ignited by LB’s death. Based on the efforts and impact so far, and the campaign is clearly on track.

But the remaining target – to “ensure that lasting changes and improvements are made” – is more elusive, largely because it lies outside the responsibility and remit of members of the #107days campaign.

Contrast the collective nerve, verve, indignation and initiative of the last 46 days to what Norman Lamb calls the historic “institutional inertia” of NHS and local government commissioners, a cultural apathy undermining plans to move more people out of Winterbourne-style units.

The existence and continued use of ATUs might be a challenging and seemingly intractable problem. But that’s not good enough a reason for commissioners – and those who run and govern such places – to ignore the problem. There are good intentions coming from some in authority; people just need to put their collective muscles where their mouths are. Doing that sometime during the remaining 60 days of the campaign for Connor seems like the right thing to do.

Development and disability: new report urges action

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

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

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

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

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

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

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

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

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

In style and inclusive

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

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

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

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

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

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

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

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

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