Category Archives: Uncategorized

Bomb in my brain: new blog on living with a brain tumour

What’s it like living with a brain tumour?

My friend Jude Bissett can tell you – she first got the news in 2003 and has just launched a new blog about life with a brain tumour, Bomb in my brain. The site is pretty new, but it’s easy to see how Jude’s powerful and honest testimony of a life changing experience will be an important resource for others undergoing the same thing. And even if the issue isn’t something you’ve experience of, it’s an engaging and insightful read.

Jude explains: “I evaded writing about what happened for 15 years. Why? I don’t really know. It was in my head for all that time, usually safely in the background, largely ignored but with occasional flashbacks and incidents that forced it forward. And this time it’s back in a way I can’t ignore and the time feels right to document it, in part therapy, in part to have an accurate record and in part to help anyone else who may face a similar situation and be seeking clues as to what they might expect. Though it will only be clues, we are all different, we all experience life differently.”

Here’s a recent extract from September:

By the end of my “break” I am feeling basically back to normal. The summer holidays have been particularly long with glorious weather, it felt like they would go on for ever. Then before I know it, Posy has her birthday and I am due back at hospital for round two. No tears for me this time, not now I know the drill. I fair skip into the Colney Centre, ready for my spot in a comfy chair and a nice cup of tea from a McMillan volunteer. During the week I had a blood test done at my local surgery. As ever they found it difficult to squeeze much out of me but there was enough apparently for them to check my platelets which were excellent, thank you smoothies! They need to check the white count but they have a machine on site to do this.

My Portacath is used to get the blood and I am delighted it can be used both to get blood out as well as do the infusion, what a clever device, how smug I feel for getting it put in!After a few minutes the nurse returns. She is very sorry but they can’t proceed with my treatment. This news comes as an absolute shock to me, this is not something I thought would happen. It seems my white count is too low. It has to be over 1 and mine is languishing at 0.24. But I feel fine! What has gone wrong? What have I been doing wrong? I’ve had all the smoothies with spinach and seeds and other shite, why hasn’t that been good enough? “it’s just the treatment” the nurse keeps repeating. I don’t understand and I feel unaccountably upset. The nurse tells me they’ll defer me a week and my count will come back up. I should be pleased at the reprieve but I am fretful as I’ve plans to attend a good friend’s 50th at the end of the summer and I’m worried this will throw out my timing. But I calculate the next week will still be ok and I defer for the week and return home.

You can read more of this extract at Bomb in my brain by Jude Bissett and please share widely.

Snooker, skiing and smuggling in cider – lessons from a long-stay hospital

A new heritage project aims to dispel misconceptions about learning disability and the lives of people who lived in long-stay institutions. The charity CASBA (Citizen Advocacy South Birmingham Area) spent a year collating stories and archive material relating to Birmingham’s Monyhull Hospital. Myth and rumour about the hospital was rife; it was referred to as the local madhouse and the term ‘Mony’ was used as a playground insult at local schools. In what is Birmingham’s first learning disability heritage project, the free event From Institution to Community, runs on Saturday October 6th.

Guest post by Joe Peacock, heritage project coordinator, CASBA

Roland Clewley was 16 when he was first admitted to Monyhull Hospital, a long-stay institution for people with learning disabilities. It was 1966 and before Monyhull, Roland been in a pupil referral unit in North Wales for 18 months and had grown up in a care home in South Birmingham. He quickly grew to hate being locked up.

Roland spent almost 15 years in institutional care.

Former Monyhull Hosptial resident Roland Clewley today

Roland says: “It was okay at first, but I wanted to get out, you see. I wanted my own place – a flat or something. I said that to them, but they said; ‘They’re all the same, just like you’ so I started running away.”

This was not the easiest thing to do, but he remembers: “I got through the window and then went down the pipes and ran off along the canal. It was dark down there and you couldn’t see what you were doing. We didn’t get very far, then we got picked up by the police. They put us in a van and put us in a cell for a few hours until Monyhull picked us up.”

Such attempts weren’t looked upon kindly by the hospital. Contrary to local myths, there was no alarm that went off when someone ran away, but they were punished on their return. “They put me in a side room. It was like a cell. It was a bare room with just sheets and blankets on the floor to sleep on. The first time, I did a week in there, then the next time two and then three weeks at a time.” He was let out to go to the toilet and to eat, but it was a severe punishment for someone who just wanted his freedom.

He was then sent to a stricter institution called Moss Side: “Terrible, that place was” he recalls; “You were locked in all the time. You could go out in the grounds, but there were walls all the way around – it was like a prison. I was there for nearly eleven years.” In fact, Moss Side was a high security psychiatric hospital and later merged with another similar institution to form Ashworth Hospital. Roland is reluctant to disclose much of his experiences there and it is hard to imagine how tough it would have been for him. Roland was then sent back Monyhull, and it must have been quite a relief in comparison.

“It was a bit better second time – it changed a lot. When we used to be on the ward it was a male ward and you’d have male staff, but the next time I was there it was all mixed – you’d got male and female staff working there.”

He also felt more optimistic that he would be allowed out with the increased emphasis on care in the community and deinstitutionalisation in the 1980s: “What else changed is that they were taking the patients out of there. Before, you don’t know how long you’re there for, or anything like that. I thought I was going to be there until I was about 80.”

He began to be given more responsibilities, helping the physiotherapist to get patients to appointments and was even paid for working with the porters; collecting laundry from the wards. Some of the porters befriended him and they would socialise as well as work together.

He was quite a decent sportsman, too, who won a snooker tournament and has a photograph on his wall of him being presented with the trophy to remember it by. There was a table in his ward and he’d play with anyone who was up for it or just practice on his own. He also played table tennis, football and was keen to try any other activities on offer.

Roland Clewley winning a snooker competition (photo: CASBA)

Perhaps, one of the most surprising things he did, due to his close work with the physiotherapist was to go skiing in Italy. “Went for a week. I kept on standing up when I fell over all the time. You want to do it – it’s a laugh.”

Another way in which he’d try to beat the boredom of institutional life was to sneak off to the local pub, the Cartland Arms. More often, though, he remembers that they would smuggle cans of cider in from a nearby shop and sit in bed drinking those after lights out.

In 1980, he was moved out of the hospital into a hostel and then into a flat where he still lives. Ironically, for a man desperate to escape the hospital, his flat overlooks the site of the former institution he was in. Surprisingly, he continued going back to Monyhull to work with the porters them even after he’d moved out and right up until the time it was closed down and demolished. He retained his income, was fed and had a social life.

Now, in his late 60s, Roland seems happy enough with his life, although when I asked when he’d last been on holiday, he replied that it was 25 years ago. With limited mobility, he must be in danger of becoming more and more isolated.

The biggest shame of his life for me, though, is all those wasted years when he was locked away. With the right support and encouragement, he was capable of doing so much more.

• Joe Peacock is heritage project coordinator at learning disability advocacy charity CASBA
• CASBA’s From Institution to Commununity is at Monyhull Church from 1.30pm on Saturday October 6th and you can watch a trailer about the project here

Changing perceptions of learning disability: an update on my book, Made Possible

With my sister Raana (left), who has influenced my book Made Possible.

So I’ve spent the last few months working with some incredible essayists for my crowdfunded book Made Possible. The book is a collection of essays on success by (note: ‘by” and not “about”) high achieving people with learning disabilities. Some pieces are still being written while others are almost complete. I’m delighted – but not surprised – to say that the ideas and stories across the essay collection are quite astounding.

The pieces of writing cover very different successes in a range of contrasting areas like the arts, campaigning and sports. But what unites these varied essays is the fact that the writers’ voices are so honest, powerful and at times just plain funny (intentionally so). This is how Made Possible will give a two-fingered salute to the outdated perceptions that exist about learning disability. The book will not only document the hugely impressive achievements of talented people with learning disabilities, but will do so in an engaging, authentic way.

On the issue of talent, my sister Raana’s always been a creative type, from her childhood fancy dress days to her current love for woodwork and baking. When she was younger though, art was her thing, and I’m delighted that a creation she made a few years ago featured in the recent national disability conference at Lancaster University.

‘Mosaic’, by Raana Salman

The ninth biennial Lancaster Disability Conference run by the Centre for Disability Research (CeDR) incorporates Raana’s intricate Mosaic in its event information and publicity. If you follow #cedr18 and @CeDRLancs on Twitter you might get a glimpse of my sister’s handiwork which usually hangs in my hallway (so as many people as possible get to see it). Raana’s family and friends are so proud to see Mosaic shared more widely – a big thank you to Lancaster University and its Made Possible supporters for the opportunity to show more people what our sister – daughter – aunt – cousin – niece – friend – housemate – colleague- neighbour (because Raana is many things) can do.

The fact that learning disabled people’s talents are overlooked is an issue that cropped up in a recent interview I did for the Guardian. In conversation with Sam Clark, the new chief executive of campaigning organisation Learning Disability England, Sam’s words reflect what lies at the heart of my book: “We all bring gifts and talents, and I think it would be brilliant if we could understand that’s the case for everyone.”

I think it would be brilliant too. When I launched the crowdfunding campaign for Made Possible, I explained that shattering the tired stereotypes of “superhero” and “scrounger” is what drives this book. It also influences my articles on disability issues, some of which were recently shortlisted for a British Journalism Award for Specialist Media. Specialist writers cover issues that can be otherwise overlooked in mainstream media – my focus is the 1.5m people in the UK with a learning disability, the inequality they face and their untapped potential.

Thanks, as ever, to everyone who’s helping to get Made Possible published; by backing this book you’re helping create something that challenges the current narratives.

If you’ve not done so already, do link up with me on Twitter, LinkedIn, Facebook or Instagram or using the hashtag #MadePossible

How a national scandal goes unnoticed

Tomorrow is the seventh anniversary of an event that reflects an enduring national scandal. A long-running scandal that doesn’t trigger public or political outrage.

I’ve written an opinion piece for the Guardian about this today.

On May 31 2011 BBC’s Panorama exposed the abuse of people with learning disabilities at the NHS-funded Winterbourne View assessment and treatment unit (ATU) in Gloucestershire.

There are around 1.5m learning disabled people in the UK, including my sister, Raana. But the general disinterest in learning disability means that tomorrow’s anniversary will not trouble the national consciousness.

Rewind to 2011, and Winterbourne View seemed like a watershed moment. The promise that lessons would be learned was reflected in the government’s official report [pdf], and in its commitment to transfer the 3,500 people in similar institutions across England to community-based care by June 2014. Yet the deadline was missed, and the programme described by the then care minister Norman Lamb, as an “abject failure”.

Since then, various reports and programmes have aimed to prevent another Winterbourne View. These include NHS England’s “transforming care” agenda, which developed new care reviews aimed at reducing ATU admissions.

Yet despite welcome intentions, government figures [pdf] for the end of April 2018 reveal that 2,370 learning disabled or autistic people are still in such hospitals. While 130 people were discharged in April, 105 people were admitted.

This month, an NHS investigation reflected how poor care contributes to the deaths of learning disabled people. It found that 28% die before they reach 50, compared to 5% of the general population.
Unusually, this “world first” report commissioned by NHS England and carried out by Bristol University came without a launch, advance briefing or official comment. It was released on local election results day ahead of a bank holiday. Just before shadow social care minister Barbara Keeley asked in the Commons for a government statement about the report, health secretary Jeremy Hunt left the chamber.

The most recent report was partly a response to the preventable death of 18-year-old Connor Sparrowhawk at a Southern Health NHS Foundation Trust ATU. The Justice for LB (“Laughing Boy” was a nickname) campaign fought relentlessly for accountability, sparking an inquiry into how Southern Health failed to properly investigate the deaths of more than 1,000 patients with learning disabilities or mental health problems. The trust was eventually fined a record £2m following the deaths of Sparrowhawk and another patient, Teresa Colvin.

Recently, other families whose learning disabled relatives have died in state-funded care have launched campaigns, the families of Richard Handley, Danny Tozer and Oliver McGowan to name just three. Andy McCulloch, whose autistic daughter Colette McCulloch died in an NHS-funded private care home in 2016, has said of the Justice for Col campaign: “This is not just for Colette… we’ve come across so many other cases, so many people who’ve lost children, lost relatives”. Typically, the McCullochs are simultaneously fighting and grieving, and forced to crowdfund for legal representation (families do not get legal aid for inquests).

To understand the rinse and repeat cycle means looking further back than 2011’s Winterbourne View. Next year will be 50 years since the 1969 Ely Hospital scandal. In 1981, the documentary Silent Minority exposed the inhumane treatment of people at long-stay hospitals, prompting the then government to, “move many of the residents into group homes”. Sound familiar? These are just two historic examples.

If there is a tipping point, it is thanks to learning disabled campaigners, families, and a handful of supportive human rights lawyers, MPs and social care providers. Grassroots campaigns such as I Am Challenging Behaviour and Rightful Lives are among those shining a light on injustice. Care provider-led campaigns include Certitude’s Treat Me Right, Dimensions’ My GP and Me, Mencap’s Treat Me Well.

Pause for a moment to acknowledge our modern world’s ageing population and rising life expectancy. Now consider the parallel universe of learning disabled people. Here, people get poorer care. Consequently, some die earlier than they should. And their preventable deaths aren’t properly investigated.
You can read the full article here.

What would a truly accessible city look like?

Sweetwater Spectrum, austim-friendly housing in Sonoma, California (pic: Leddy Maytum Stacy Architects)

By 2050, an estimated 940 million disabled people will be living in cities, lending an urgency to the UN’s declaration that poor accessibility “presents a major challenge”.

The Convention on the Rights of Persons with Disabilities and laws like the Americans with Disabilities Act, the UK’s Equality Act or Australia’s Disability Discrimination Act, aim to boost people’s rights and access. Yet the reality on the ground can be very different, as Guardian Cities readers recently reported when sharing their challenges in cities around the world.

Barriers for physically disabled people range from blocked wheelchair ramps to buildings without lifts. The cluttered metropolitan environment, meanwhile, can be a sensory minefield for learning disabled or autistic people.

Cities benefits from accessibility; one World Health Organisation study described how people are less likely to socialise or work without accessible transport. Cities also miss out on economic gains; in the UK the “purple pound” is worth £212bn , and the accessible tourism market for disabled visitors is worth £12bn.

My Guardian report today looks at some of the most innovative city-based developments in the UK, Europe, Asia, America and Australia. These include skyscrapers built using universal design principles to the retrofitting of rails, ramps and lifts in transport services or digital trailblazers that help disabled people navigate their city.

For example, mapping apps make navigating cities a doddle for most people – but their lack of detail on ramps and dropped kerbs mean they don’t always work well for people with a physical disability. The University of Washington’s Taskar Center for Accessible Technology has a solution: map-based app AccessMap, allowing pedestrians with limited mobility to plan accessible routes.

Wheelchair user John Morris, who runs advice site Wheelchair Travel, says: “Seattle’s geography, with changes in elevation, sidewalk and street grade on a block-by-block basis, often make it difficult to navigate in a wheelchair. AccessMap combines grade measurements with information on construction-related street closures and the condition of sidewalks to plot the most accessible course, pursuant to the user’s needs. I would like to see AccessMap included as part of a holistic accessible route planner that includes the city’s public transportation services in building the most effective journey. Pairing AccessMap with the city’s route planner tool or with transit directions from Google Maps would make getting around Seattle easier for people with disabilities.”

Steve Lewis, a 69-year-old manual wheelchair-user who has helped co-design the Seattle technology, adds: “I spend a lot of time in downtown Seattle and am well aware of what a barrier the hills are to wheelchair travel. I have learned from experience how to navigate the downtown corridor. The best routes for someone in a wheelchair will take advantage of elevators in buildings entering on one street and exiting several stories higher on the adjacent street. AccessMap is an effort to automate and make accessible the knowledge I have acquired through experience. It currently shows graphically the steepness of the terrain. The Taskar Centre is involved in a major effort to automatically display the best routes for wheelchair users with knowledge of elevators and mass transit including the hours they are available.”

Through its related OpenSidewalks project, the Taskar Centre is developing a system to crowdsource extra information like pavement width, or the location of handrails. Nick Bolten, AccessMap and OpenSidewalks project technical lead, says: “AccessMap tackles a neglected problem: how can you get around our pedestrian spaces, especially if you’re in a wheelchair? AccessMap lets users answer this question for themselves, and OpenSidewalks will help add the information they need.”

In another US-based project, this time in Sonoma, California, a $6.8m supported-housing project, Sweetwater Spectrum, is a pioneering example of autism-friendly design. Autistic people can be hypersensitive to sound, light and movement, and become overwhelmed by noisy, cluttered or crowded spaces. However, the scheme is designed according to autism-specific principles recommended by Arizona State University. The complex, which opened in 2013, includes four 4-bed homes for 16 young adults, a community centre, therapy pools and an urban farm – all designed by Leddy Maytum Stacy Architects.

Noise is minimum thanks to quiet heating and ventilation systems and thoughtful design – like locating the laundry room away from the bedrooms. Fittings and décor reduce sensory stimulation and clutter, with muted colours, neutral tones and recessed or natural light used rather than bright lighting. Marsha Maytum, a founding principal at Leddy Maytum Stacy, says the design “integrates autism-specific design, universal design and sustainable design strategies to create an environment of calm and clarity that connects to nature and welcomes people of all abilities”.

And there’s another great project from Leddy Maytum Stacy in nearby Berkeley, the Ed Roberts Campus, “a national and international model dedicated to disability rights and universal access”. The fully accessible building, named after the pioneering disability rights activist Ed Roberts, is home to seven disability charities, a conference, exhibition and fitness spaces, plus a creche and cafe. Features include a central ramp winding up to the second floor, wide corridors and hands–free sensors and timers to control lighting.

Ed Roberts Campus – a fully accessible building iN Berkeley (pic: Leddy Maytum Stacy Architects)

No city is wholly accessible and inclusive, but there are groundbreaking examples leading the way – and we just need more of them.

Read the full piece in the Guardian here.

Success – as written by people with learning disabilities

People with learning disabilities are pitied or patronised, but rarely heard from in their own words.

Made Possible is an attempt to challenge this and change attitudes – it’s the crowdfunded book I’m editing, featuring essays on success by high achieving people with learning disabilities.

It was very cool to see Made Possible sweep into 2018 with a feature in the January issue of disability lifestyle magazine Enable. In the print edition, Enable used this shot of my baseball-cap loving sister (who has partly inspired the book) looking thoughtful and determined:

Enable magazine feature on Made Possible (photo of Raana Salman by Rob Gould)

The article describes the book’s aim of putting learning disabled people’s personalities and potential before their disability. The editorial also reflects Made Possible’s diverse range of essay contributors, and explains its goal of challenging stereotypes: “Many traditional texts focusing on disability, be it physical, sensory or learning, are factual in a medical or academic context. Made Possible is set to change this narrative by appealing to a wider audience in a bid to open the world of creativity, talent, varied skills and experiences to the general public.”

The book’s contributors have also been busy developing and working on the essays, and we’ve been unpicking the concept of success in the process. As the Enable article says of Made Possible’s theme, “success is different for everyone”, and although we’re at the inital stages, it’s already fascinating (and often surprising) to discover the essayists’ views on achievement – and who defines this.

At a time when disabled people bear the brunt of society’s inequalities, from healthcare to housing and employment, redressing the imbalance and describing how people can fulfil their ambitions is more vital than ever (you can read more about the timely aspects of this book in this recent Guardian piece by scrolling down to “Why do we need this book?”).

It’s also been superb to see new supporters pre-ordering copies of the book – thank you! If you’ve recently joined us, do connect if you’d like to on Twitter, LinkedIn, Facebook or Instagram using the hashtag #MadePossible.

Also much gratitude to those of you already in touch and mentioning the book on social media, it’s a tip top way to keep #MadePossible on the radar. Do continue to share the Made Possible page with others you think might be interested in what we’re trying to do.

To find out more, check out Made Possible on the website of its publisher, Unbound or see this page elsewhere on the blog.

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.

I nailed it: DJs with disabilities take to the air

Martin Bell, DJ and part-time assistant radio station manager

I met DJ Martin Bell (“not the man in the white suit!)” at the station where he works, Direction Radio in Epsom, Surrey, for a Guardian story published today.

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).

L-R station manager Chris Fenn and DJ Martin Bell
L-R Chris Fenn and presenter Nick Walewski
L-R Martin Bell, Nick Walewski

Revival for play that celebrates learning disability

Nathan Bessell and Heather Williams in Up Down Man at Salisbury Playhouse 2016 (Credit Richard Davenport)

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

Men and mental health

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.

Many years ago I realised that my work needed to reach out to all areas of society if real change was to happen. Over the past 10 years I have spread the anti bullying message through the media, and promoted more understanding of mental health.

I have used my clinical knowledge and personal “lived experience” to de-stigmatise mental illness and encourage people to be more open and seek help at the earliest opportunity. This is particularly pertinent with young men who are statistically half less likely to visit their GPs for mental health concerns than women. Unfortunately, alcohol abuse, drugs, self harm and suicide is often the ‘coping’ mechanism of men to mental illness. Many are in denial and this denial can often be fatal.

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.

A long time ago I realised the power of the media to inform and form opinions, and challenge damaging stereotypes. I decided to focus my mental health anti stigma approach on tv, radio and in the newspapers. I advised the Zak Dingle ‘depression’ storyline in the TV soap opera Emmerdale to try to bring as much realism and sensitivity to the role as possible.

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.