Tag Archives: blogging

Scrounger or superhero, and little in between: learning disability in the media

Scrounger or superhero – and little in between. This is how people like my sister, who happens to have a learning disability, are generally seen in society and the media.

The missing part of the equation is what led me to develop the book Made Possible, a crowdfunded collection of essays on success by high-achieving people with learning disabilities. I’m currently working on the anthology with the publisher Unbound and it’s available for pre-order here.

I’ve just spoken about the role of media in shaping attitudes to disability, and how and why is this changing at an event – Leaving No One Behind at Birmingham City University. The day was organised by the charity Include Me Too and community platform World Health Innovation Summit.

I wanted to support the event because of its aim to bring together a diverse range of people, including campaigners, families, self-advocates and professionals (check out #LeavingNoOneBehind #WHIS to get a feel for the debate).

This post is based on the discussions at the event, and on my views as the sibling of someone with a learning disability and as a social affairs journalist. I’ve focused on print and online media influences perceptions; broadcast media clearly has a major role – but it’s not where my experience over the past 20 years lies.

Firstly, here’s Raana:

With my sister Raana, (left) pic: Maya Gould

Raana’s 28. She loves Chinese food. She adores listening to music (current favourite activity: exploring Queen’s back catalogue – loud). She’s a talented baker and has just started a woodwork course. She has a wicked, dry sense of humour (proof here).

She also also has the moderate learning disability fragile x syndrome. She lives in supported housing and will need lifelong care and support.

The way I describe Raana – with her character, abilities first, diagnosis, label and support needs second, is how I see her. It’s how her family, friends and support staff see her.

But it’s not how she would be portrayed in the mainstream press.

Instead, this comment from the writer and activist Paul Hunt, reflects how she and other learning disabled people are seen:

Quote from writer and activist Paul Hunt

“We are tired of being statistics, cases, wonderfully courageous examples to the world, pitiable objects to stimulate funding”. Paul Hunt wrote these words in 1966 – his comment is 51 years old, but it’s still relevant (charity fundraising has changed since then, but the rest of the words are spot on – sadly).

Say the words “learning disability” to most people and they will think of headlines about care scandals or welfare cuts.

These reinforce stereotypes of learning disabled as individuals to be pitied or patronised. The middle ground is absent; the gap between Raana’s reality and how she’s represented is huge.

How often, for example, do you read an article about learning disability in the mainstream media which includes a direct quote from someone with a learning disability?

Stories are about people, not with people.

Caveat: as a former national newspaper reporter, I know only too well that the fast-pace of the newsroom and the pressure of deadlines mean it’s not always possible to get all the interviews you’d like. This is harder for general news reporters reacting to breaking stories than it is for specialists or feature writers who have just the right contacts and/or the time to reflect every angle of the story. But there’s still more than can be done – and much of it is very simple.

Take the language used in news and features.

There’s a huge amount of research shows how media influences public attitudes. One focus group project by Glasgow University a few years ago showed people thought up to 70% of disability benefit claims were fraudulent. People said they came to this conclusion based on articles about ‘scroungers’.

The real figure of fraudulent benefit claims? Just 1 per cent.

Research from Glasgow University on disability in the media

The language used in mainstream media is often problematic. I wince when I read about people “suffering from autism” – “coping with a learning disability” – or being “vulnerable”.

Images used in stories often don’t help.

As a quick – but very unscientific – litmus test – I typed the words “learning disability” into Google’s image search.

This is a flavor of what I found – the most common pictures that came up were the dreadful “headclutcher” stock image that often accompanies articles about learning disability.

Typical results from a Google image search on “learning disability”

These images say, defeat, frustration, confusion, negativity.

This is not how I see my sister, her friends or the learning disabled campaigners I know.

This is more how I see them:

Portrait of Martin Bell, used in my recent Guardian article


This shot is from a story I did a few days ago about Martin, Martin’s 22 and works part-time as a DJ at a local radio station (you can read about him here). Martin also happens to have a moderate learning disability and cerebral palsy.

We need more of this.

An obvious – but nonetheless important – point to make here is about the disability and employment gap. A more diverse workforce in the creative sector will impact on representation. Only 6% of people with learning disabilities work, for example, but around 65% want to (I wrote about this issue in the Guardian recently)

But there is cause for optimism. There is a slow but significant shift in the representation of learning disabled people thanks to the rise in grassroots activism, family campaigning, self-advocacy and the growing empowerment agenda.

Social media is helping spread awareness and spread a different narrative.

This rise in self-advocacy is what led me to develop Made Possible. The book’s aim is to challenge stereotypes; it targets a mainstream readership and introduces readers to learning disabled people in areas like arts, politics and campaigning. Their achievements are impressive regardless of their disability.

The book I’m editing, Made Possible, featured recently in the Guardian

While I’m researching the book, I’m trying to keep three words in mind – attitude, ability, aspiration:

Am I sharing experiences that help shift public attitudes?

Am I reporting people’s abilities, not just their disabilities?

Am I reflecting people’s potential – what do they aspire to achieve, and how can this happen?

And although I’m focusing on positive representation of learning disability, it’s worth stressing that there’s an equally vital need to highlight the challenges.

Challenges like the impact of austerity, for example, or the health inequalities, or the fact that over 3,000 people are still locked away in inappropriate institutional care.

The two go hand – a more authentic portrayal of people’s lives (their qualities, hopes and aspirations) and reporting the inequalities they face.

Because readers are more likely to care about the inequality and support the need to solve it if they feel closer to the real people experiencing that inequality – if they stop seeing learning disabled people as “the other”, or as statistics (as Paul Hunt wrote over 50 years ago..) and as people first.

It’s often said that media should reflect, serve and strengthen society. Which means we have to be more accurate and authentic about how we include and portray a huge section of that society – including my sister – which happens to have a disability.

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.

12 days of Christmas, Social Issue-style

Season’s greetings from The Social Issue – to mark the jollities, here’s a snapshot of some of the upbeat posts and pictures about people, projects and places featured over the last 12 months. This festive pick is by no means the best of the bunch – the inspiring stories below are included as they’re accompanied by some interestin and images and almost fit with a festive carol, if you allow for a little the poetic and numerical licence…

Very huge thanks to the Social Issue’s small band of regular and guest bloggers, all contributors, supporters, readers and everyone who’s got in touch with story ideas and feedback. See you in January.

On the first day of Christmas, the blogosphere brought to me:

A tiger in an art show

Batik Tiger created by a student at specialist autism college, Beechwood

Two JCBs

The Miller Road project, Banbury, where agencies are tackling youth housing and training. Pic: John Alexander

Three fab grans

Hermi, 85: “I don’t really feel like an older woman.”

Four working teens

From antisocial behaviour to force for social good; Buzz Bikes, Wales.

Five(ish) eco tips

Eco hero Phil uses a “smart plug” to monitor domestic energy use

Six(ty) volunteers

Young volunteer with City Corps, Rodney WIlliams

Seven(teen) pairs of wellies

Abandoned festival rubbish, Wales, gets recycled for the homeless, pic credit: Graham Williams

Eight(een-years-old and over) people campaigning

Participants in the Homeless Games, Liverpool

1950s hall revamping

"The kid who talked of burning down the place is now volunteering to paint it."

10 lads a leaping

11-year-olds integrating

Children's al fresco activiites at the Big Life group summer scheme

12(+) painters painting

View from the Southbank of Tower Bridge, Aaron Pilgrim, CoolTan Arts

Merry Christmas and Happy New Year!

The Social Issue on the Guardian’s radar

Less than a week since its launch and The Social Issue gets onto the radar of the Guardian’s Society Daily blog; Patrick Butler, the paper’s editor of society, health and education policy was clearly blown away with the irresistible combination of Shaks Ghosh and Groucho Marx (Shaks wrote the guest blog, Groucho provided the SocialSpeak quote).

Thanks to everyone who’s commented on the blog so far, either on the site or via email – the feedback’s been helpful and, as a result, there are a few gentle tweaks and subtle additions here and there. Spot the difference.