If you need social care support, why can’t services respond better to your individual aspirations – instead of fitting you into what’s already on offer?
This aim – shifting traditional social work practice to “community led” methods – is at the heart of a new programme I’ve just reported on.
Leeds is one of nine local authorities changing adult social care by developing community-led social work (in a nutshell – more local solutions). The councils are being supported in this drive by social inclusion charity National Development Team for Inclusion’s community-led support (CLS) programme. NDTi has just published an evaluation from the first year of delivery in the participating areas
Gail*, for example, has a learning difficulty, mobility problems and is prone to angry outbursts. Leeds council adult social care staff have supported her intermittently over a few years, helping with self-care and chaotic living conditions.
Recently, it considered commissioning weekly visits from a support worker to help Gail manage her home. But instead, under a new approach launched in Leeds last year, Gail met social work staff at community “talking points” – venues such as libraries and churches instead of at home or at the council. The neutral environment sparked different conversations about support. Gail said she wanted to volunteer and staff felt able to be more creative with her care.
A social worker supported Gail to explore opportunities at her community centre, where she began volunteering. Her self-esteem has grown, her personal appearance has improved and she has begun anger management classes.
Feedback from people like Gail involved in the new support method includes comments about staff such as “they listened to me” and “we did talk about the important things”.
The concept of community social work is not new, but demand for social care, pressure on staff and funding cuts mean less time and freedom to develop innovative solutions. The 2014 Care Act encourages community-focused support, but this has been hard to achieve. A difficulty in developing “strengths-based” solutions is well documented, for example, in recent guidance from Think Local Act Personal.
At Leeds, adult social services director Cath Roff says the council had two choices: “Either we go down the road of ever-tightening interpretation of eligibility criteria to manage resources, or try a new approach. Social work services are increasingly becoming the ‘border patrol’, policing in order to manage reducing budgets. None of us came into social care to do that.”
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 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:
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:
“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.
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.
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:
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.
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.
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.
Martin, who has a mild learning disability and cerebral palsy, recently interviewed two engineers from the PWL production company and the experience boosted his confidence. “That was my first interview. I was nervous but I nailed it,” he says. “We recorded it first and then we edited it. I enjoyed coming up with questions.”
He also won the station’s producer of the year award for 2016-17. What would he do if was not at the station? “I wouldn’t know everyone here – they are like my family. I would be at home doing nothing or going out and spending money, but I want to save and become more independent.”
Online station Direction Radio is part of social care provider Surrey Choices’ day service programme. It helps people with physical or learning disabilities to develop skills in broadcast and production.
Some 19 DJs produce and present the shows reflecting all musical genres – from rock to pop, R&B and classical. Station manager Chris Fenn (who does not have a disability) explains that DJs have “a blank canvas” to create their slots, which last between one and three hours, and decide on everything from the jingle to the playlist. “I say to all the guys, ‘You do what you want to do with it’,” says Fenn. “It’s all their choice and that’s why it’s so diverse.”
You can read my report on Martin and his fellow DJs on the Guardian website (all photos from Surrey Choices).
A play that celebrates people with learning disabilities and that was written for an actor with Down’s syndrome is being revived this week at Bristol’s Tobacco Factory Theatres.
Myrtle Theatre Company’s show is a sequel to the company’s Up Down Boy, which was first performed in 2013 at the National Theatre and then toured the country. Nathan Bessell, an actor with Down’s syndrome, plays Matty Butler in the play inspired by real stories from families of young people with Down’s syndrome.
As part of the run from this Wednesday (Nov 8) to November 18th, Tobacco Factory Theatres will host an evening of free events for young adults, led by REACT, the theatre’s team of young producers aged 14-25. There will be a series of free pre-show events and a post-show debate on the play’s themes. There will also be a series of relaxed performances which offer a welcoming environment for theatre-goers with additional needs.
Last year, when I interviewed the theatre company’s director, Heather Williams, she described the necessary adjustments to the production process when working with a learning disabled actor. This includes going at a slightly slower place, trying to follow “rather than lead”, being flexible and – above all – listening.
All of this, she told me, allows Nathan to grow as a performer: “You just need the right conditions to flourish.” This approach – creating an environment where people can more easily meet their potential – is one I wholeheartedly support (and a belief that drives my latest project, the book Made Possible). Find out more about the play here.
Photos of the 2016 run of Up Down Man, shot by Richard Davenport
As a qualified nurse I have seen at first hand the impact of bullying on a person’s self esteem and self worth. I have seen people self harm – colleagues and staff – and lost friends through suicide. I never become desensitised to this and hope I never will.
Although as a nurse I have to be dispassionate it is never easy to not ask myself could more have been done? Should more have been done? The nurse has feelings too. My lifetime’s work as a mental nurse has not only been confined to the hospital.
It is with this in mind that I have tried to creatively tackle stigma and discrimination away from the usual clinical set up. To normalise mental health is to eradicate the myths and bring it out from the inner walls of the percieved ‘asylum’ It is all about encouraging people to view mental health as being no different to physical health, both sides of the same coin so to speak. More importantly neither working as effectively without the other, each influencing the other.
This work was well received by the viewers, yet there were still people who criticised me online, so called ‘keyboard warriors’ who challenged my views and questioned my knowledge and nursing experience. I had to quickly develop a thicker skin and told myself that even if people are critical, even if they are dismissive of what I do, at least it is encouraging discussion of mental health. it is bringing the subject into the open which is required to break down the myths and misconceptions. Often the criticism echoes people’s own inner fears about opening up. It is a struggle for them to acknowledge their own mental health immunity, especially in my own profession, particularly amongst men.
In spreading the anti-stigma message I have found myself in a range of diverse places. From the Houses of Parliament, universities and colleges across the country to the social clubs of the industrial north east where I live. The places may be different but the message remains the same. I have worked with scholars and gangsters, actors and musicians, writers and poets. Mental illness does not discriminate and any one of us could be the next victim. It does not respect sexual gender, social class, religion, ethnicity or culture. This is why my work has to reach out to all areas of society if it is to make a difference.
I am now liasing with the former MMA fighter Alex Reid to explore writing a book to reach out to men. Alex has also been on the receiving end of bullying through the media and we both share a passion to positively promote healthy mental and physical health. Maybe combining our life experiences will touch a chord with men? We are poles apart and yet we are so alike. We have both experienced bullying and both share a desire and determination to help others.
Alex’s world of MMA fighting attracts the kind of man I am trying to reach out to with my message. Men who dismiss mental illness or stress as being anathema to them and only affecting women. Physical strength and a ‘macho’ attitude to life is no defence against mental illness. I see a strength in men sharing their emotions and opening up about their feelings.
My own world of mental health nursing includes many men who are in denial of their own feelings and whose ‘big boys don’t cry’ outlook on life serves to perpetuate the stigma and misunderstanding of mental health even more.
Six weeks ago I launched a crowdfunding campaign for Made Possible, a groundbreaking collection of essays on success by high-achieving people with learning disabilities.
The book is inspired by my sister, who has the learning disability fragile x syndrome, as well as by some of the remarkable, succesful people I’ve met and interviewed over the last few years – all of whom happen to have a learning disability.
I’m delighted to say the book is now 100% funded, such has been the fast pace and mounting enthusiasm for the project. More than 200 diverse people and organisations have got behind the book since its launch on 6 September.
Made Possible presents the authentic experiences of a range of professionals who have a learning disability in different areas like theatre, music, art and campaigning. And, for the first time, these high achievers tell their own personal stories of success, in their own words.
It is a book to change the current narratives about learning disabled people, narratives that mean they are talked about as somehow less than human.
Thank you to everyone who’s got involved and backed this book. I can’t wait to start working on it. To find out more, follow the book’s progress and to pre-order a copy, see Made Possible on the Unbound website.
I’ve written a piece for the Guardian on what people who have experienced mental health issues, campaigners and mental health sector professionals want from new legislation.
The promise to overhaul the Mental Health Act 1983 is one of the few Conservative party manifesto pledges to survive the election. The decision to reform the act, which appeared in the Queen’s speech in June, means the government is committed to taking steps to overhaul the legislation in the next 12 months.
The 1983 act, which outlines how people can be involuntarily detained and treated in hospital for mental health issues, was amended in 2007. This included introducing the right to an independent advocate while in hospital; and the controversial community treatment orders that were criticised for failing to safeguard patients’ rights.
However, 30 years on, the legislation is regarded as outdated and in need of reform, and as one commentator says in today’s article: “The best way to prevent someone being detained is to prevent them from falling into a crisis in the first place.”
Anxiety and mobility issues mean that 76-year-old Anna Bolton* is usually housebound. But regular calls to a free, confidential helpline for older people have helped her “feel normal”.
Bolton’s mental health deteriorated after she was widowed two years ago. Although she has had some support from local mental health counsellors in her native north-east England, help from Blackpool-based The Silver Line was “invaluable” and more immediate than waiting months for a counselling referral.
The Silver Line, created in 2013 by Esther Rantzen (who also created Childline), is a free, 24-hour, 365-day-a-year helpline offering information and friendship, and signposts people to local organisations for support or social activities.
“There’s still stigma about mental health,” says Bolton. “It’s often easier to speak to a stranger, and nice to know you can call day or night.”
Bolton, who has no family nearby, contacted the helpline after it was mentioned by a receptionist at her GP surgery. She is among the 10,000 people who call the helpline – often referred to as the Childline for older people – every week.
It’s taken less than four weeks for the book I’m editing, Made Possible, to become more than 50% crowdfunded – and this is all down to the project’s incredible and growing band of supporters.
The anthology includes the experiences of people with learning disabilities in their own words – it challenges the current narratives on learning disability which dictate that people are pitied, patronised, and not heard from directly. It presents the authentic experiences of a range of professionals who have a learning disability; these high achievers tell their own personal stories of success.
Attitudes must change – and that’s why we need this book, which is already halfway to being published (click here to make a pledge to help publish the book and join its community of supporters).
To hit such a milestone so soon reflects a determination of so many people to shift negative attitudes towards learning disabled people.
Made Possible also considers the wider context that undermines people’s talents and aspirations. For example, we’re in party conference season and the Conservatives are gathering in Manchester as I write. Yet most politicians (with a few rare exceptions) overlook learning disabled people – despite the fact that more than a million people with learning disabilites are entitled to vote. This is not only an equality issue – why does the political world seem to bypass people who have both a right and a desire to go to the polls? – but vote-needy politicians could do with wooing this signifcant chunk of the electorate.
Many of this book’s supporters (scroll down on this page to “Supporters”) including campaigners, activists, self-advocates and support providers – are among a strong and growing lobby working hard (all year round – not just during conference season) to change this. I’m looking forward to reflecting the vital growth in this kind of activism and awareness-raising in Made Possible.
* This post is based on an update originally published on the Unbound website
There has been surge of support for Made Possible, the non-fiction book challenging learning disability stereotypes I’m crowdfunding with the award-winning publisher Unbound. The crowdfunding campaign has been so popular that the anthology is more than halfway to being published – just three weeks after launch. Wow (the background to the book is in this previous post).
I’m so grateful to everyone who’s pre-ordering Made Possible (all supporters get their name printed in the book), as well as sharing its aims and inviting others to get involved. As I write this update, there are 127 people in our Made Possible community, and I’m absolutely delighted that the book’s incredible range of supporters includes learning disability self-advocates, family members, campaigners, professionals, support organisations and people interested in human rights.
If you’re on social media, do follow #MadePossible and connect on Twitter, Facebook, LinkedIn or Instagram – I’d welcome the chance to hear from you if you fancy saying hello.
During Unbound’s recent Anthology Week, which offered a social media focus on the publisher’s essay or story collections, some Made Possible makers tweeted about why they decided to help publish Made Possible:,
Thanks so much to everyone for joining the growing campaign to publish this book; I’m looking forward to seeing what the next week brings.