Tag Archives: communication

Unique art from survivors of brain injury

Artist Nick Mayers, a member of the Submit to Love studio collective.
Artists Nick Mayers, a member of the Submit to Love studio collective.

A unique art collective in London consisting of brain injury survivors is exhibiting its “unguarded, emotive” work for the first time.

The Submit to Love Studios, supported by brain injury charity Headway East London, is a creative space in Hackney for over 50 survivors of brain injury – barely any of the artists had practiced art before their injuries. The work of around 30 of the collective’s members is featured in a new exhibition that runs until 23 February at Stratford Circus Arts Centre.

MRI, by Graham Naylor, showing as part of an exhibition by brain injury survivors (credit: Headway east London)
MRI, by Graham Naylor, showing as part of an exhibition by brain injury survivors (credit: Headway east London)
Artist Jon Barry's work, Lady in Green, in progress.
Artist Jon Barry’s work, Lady in Green, in progress.
Birds, by Laura Wood
Birds, by Laura Wood

While many of the creatives have had solo exhibitions since joining the project, this is the first time they are showing work that outlines how their experiences, including recovery, have influenced their art. The show asks visitors to consider the question “how far can one life-changing incident be seen in the artistic work you create?”.

In a related event this Saturday, the collective, which began 10 years ago, is involved in an free art workshop at London’s Southbank Centre. The event involves the artists encouraging the public to participate in on the theme of “what love means to you” with contributions acting as the basis for a collaborative piece at the Submit to Love studio. The workshop takes place in the Clore Ballroom at Royal Festival Hall on Saturday 11am – 2pm and is recommended for ages six upwards.

Freckle Face, by Chippy Aiton
Freckle Face, by Chippy Aiton
Elvis in London, by Cecil Waldron
Elvis in London, by Cecil Waldron
Creature, by Ad
Creature, by Ad

According to Headway, survivors of brain injury are often excluded from society, have lost skills, occupations and cannot communicate as they used to; art is an outlet for communication and self-expression. The charity is keen to reposition art from a simple rehabilitation activity to “both a vocation and passion project”.

Three Chicks Going to a Do, by Tony Allen
Three Chicks Going to a Do, by Tony Allen

* The exhibition, sponsored by Hyphen Law, is open 9am-6pm (Mon-Sat) and 09.30am–2pm (Sun) until Tuesday 23 February 2017 and entry is free. Venue: Stratford Circus Arts Centre, Theatre Square, London E15

Campaign for the capital’s first sensory bus

Kay Alston's campaign for London's first sensory bus was inspired by her use of sensory books (photo: Kay Alston/Outward)
Kay Alston’s campaign for London’s first sensory bus was inspired by her use of sensory books (photo: Kay Alston/Outward)

Responding to a lack of relaxing, interactive spaces for disabled people, Londoner Kay Alston has decided to launch her own campaign for the capital’s first ever sensory bus.

The 32-year-old, who has moderate learning disabilities, is backed in her social enterprise project to create a mobile sensory room by Outward, the care and support charity that runs her supported living in Camden, north London.

Kay needs to raise £28,245 towards creating the project. A sensory room is a relaxing environment designed to focus on specific senses through special objects, and sound and visual effects. It enables people to interact with, and control the environment around them and is particularly beneficial for people with sensory impairments, complex needs and those with autism.

Kay Alston in her sensory room at home in London.
Kay Alston in her sensory room at home in London.

The idea is that people would pay a minimal fee to use the bus, with the money being reinvested into the social enterprise. The accessible vehicle would include elements like interactive carpets, star ceiling and LED Projectors.

Here, Kay explains why her project is so vital:

“Someone once said that sensory rooms have effects of taking medication without taking the medication. The room would be a stimulating place for people, and it could help to reduce anxiety and stress, and help to improve their concentration. People with disabilities should come to sensory rooms because it’s fun and fascinating.

“The sensory room on a bus will be an interactive and a calming environment. It will have an interactive floor, platform swing, bubble tubes and light projectors with music playing in the background too. The bus will be accessible to wheelchair users. It’s purpose would be to calm and stimulate people, by giving them an interactive and visually stimulating environment.

My idea was inspired by the Autism Show. I went to in 2014 where I got a sensory tactile book, and I have been to other sensory rooms and they’re lots of fun. I have been to day centres and nursing homes where people with high needs simply get parked on the side and have nothing to do. Outward was running a Dragon’s Den competition and staff who already knew of my idea encouraged me to enter. Outward invested in my idea and said they will help me set it up. Outward staff spoke to me about the online fundraising campaign, and helped put it online and I handed out over 100 leaflets to places I shop in, people I know and places where I use their services. It’s also nice to be a little famous.

I hope the bus will be a fun and interactive place for people to learn new things. People with high needs find it difficult to get out, and can’t easily go to a place like a sensory room. Everyone can do what they want and behave in a way where they won’t be judged, sometimes I walk along the street and laugh and people look at me funny and it makes me think I want more control. In a sensory bus I could have more control.

I want to run it through a social enterprise to make it bigger and better, to add new inventions and more equipment to use. The bus will drive around to different places to give more people a chance to experience and use it.

There isn’t a sensory bus in London, and there aren’t many sensory rooms in London. The sensory rooms in London aren’t properly maintained, so I have only been to sensory rooms outside of London. But some people can’t travel that far or outside of London, so a sensory bus would make it easier by going to them. People haven’t thought of a sensory room in London to be on a bus, and there isn’t a sensory room with an interactive floor.

The most difficult thing so far has been getting enough people to pledge as I don’t have many connections. But it is a unique idea because there isn’t a sensory bus in London. If we could make this happen it would be a great achievement for me and would help lots of people in London.”

My campaign to change attitudes, one event at a time

We have just ‘celebrated’ World Mental Health day (10 October). I, and many like me, hope that as each year passes so does the stigma and discrimination of mental health. Stigma impacts like a disease – if left untreated, the result is devastating.

Attitudes are certainly changing around mental health, although slowly. As pointed out by Time to Change, the mental health campaign I’m involved in, perceptions are changing. The National Attitudes to Mental Illness survey shows that since 2011, an estimated two million people – or 4.8% of the population – have improved attitudes towards people with a mental illness.
In addition, the data suggests that more people are acknowledging they know someone with a mental health problem (64% in 2013 compared with 58% in 2009). However nearly half (49%) of respondents said they would feel uncomfortable talking to an employer about their own mental health.

Anti stigma work has taken up a large part of my life in psychiatric nursing. And, although it sometimes feels like two steps forward and one back (as the research quoted above hints), the long and winding journey is worth the taking and the rewards are for the benefit of everyone.

I have seen the impact of stigma. I have also felt it. I have seen the destruction it causes people who experience mental illness and their loved ones. This is the motivation for my work.

The recent news about the impact of isolation underlines the need for more work along these lines. Both young people and older folk are affected by severe loneliness.

These issues provided the context for a talk I organised in my childhood village in July, and which I blogged about on these pages.

My talk was about the stigma of mental health and aimed to promote Time To Change. I wanted to raise awareness of the insidious impact of stigma and its long-term damage, and explore how we can all make a difference to the lives of others through our daily interactions. I wanted my message to reach across the village and, more personally, make a mark in the place where I spent my childhood years.

For me going back to my former home, which I left almost 40 years ago, was quite an emotional occasion. It had been the culmination of a life long ambition, a seed borne in childhood that had finally flowered. In the dark corners of my mind has sat the repressed thoughts from childhood of my father’s mental health issues, and the attitudes of others at the time to this.

Assembled in the room of around 50 people were faces from my childhood, alongside faces of the present. An eclectic range of people and experiences, young and old. Friends and family sat beside strangers. I will always be very grateful for the efforts they made to attend and help me to achieve my ambition.

Social contact and interaction is a powerful weapon in challenging ignorance and the myths surrounding mental health. Breaking down the invisible barriers we put up and accepting people as people, rather than defining them by their mental health condition is critical. The two-hour event was informal and interactive thereby providing the ‘safe’ space for those who wished to be open and share their personal experiences, or the experiences of others they hold close.

I started with a mythbusting quiz about mental health to highlight the misconceptions that exist, then spoke about my work in mental health nursing, my anti-stigma initiatives, and also my own experience of depression. I covered my work in the media with the TV soap Emmerdale, advising on the award winning depression storyline of one of the main characters, Zak Dingle.

I stressed it was my hope to encourage the viewers to empathise with Zak’s plight, to see him as being vulnerable and a victim of his circumstances rather than a danger to others, and criminalized

To contrast with this I also explained my advisory role with the character Darrell Makepeace in BBC Radio 4 The Archers. This character had not been received positively by listeners because the producer had decided to criminalise this character. Despite this, I stressed this at the very least ensured people were talking about mental health.

It was a success. I was at pains to ensure it went well because it meant so much to me. I have delivered many talks and presentations previously to large and small audiences but this one was more personal.

Since that summer’s evening I have spoken to people to gauge how things went. Did it make a difference? Has it changed their views? Inspired them? Where do we go from here? The responses have enthused me.

I intend to arrange a follow up event to build on this and plant another seed for the future. A seed for the young people, some who, sadly, will inevitably grow up with the same experiences I had.

Hopefully there will be some changes in attitudes resulting from that evening. It might seem to many just a single, small event, but if it can change just a handful of attitudes and encourage people to talk about mental health, it will be a success. Change drips slowly, but it will come all the same. One day.

Enlightenment at the end of the tunnel of love

Tilley, Heart n Soul's Tunnel of Love
Singer Tilley Hughes, pictured for arts charity Heart n Soul’s Tunnel of Love

“Flirty, playful love” is not, so the general perception goes, the realm of people who happen to have a learning disability.

But that concept is being turned joyfully on its head via a heart-shaped door, a “tunnel of love”, mirrors, multi-media installations and a healthy dose of cheeky humour on London’s Southbank this summer.

Wayne, Heart n Soul's Tunnel of Love
Wayne, Heart n Soul’s Tunnel of Love

The theme of love, as perceived by artists with learning disabilities, is explored in arts organisation Heart n Soul’s latest venture at the Southbank Centre.

I’ve blogged and written articles before about the arts charity’s collaborative, awareness-raising, thought-provoking and frankly bloody good fun events and projects. Its latest move, Tunnel of Love, part of the Southbank’s Festival of Love, gives a conceptual nod and a wink to the fairgrounds of yesteryear – and it is more of the inclusive, stereotype-shattering same stuff that the arts outfit has a reputation for.

According to the London-based organisation, Tunnel of Love “raises a rare opportunity to consider a notion that seems to put society back in the 60’s once again: our attitudes to how people with learning disabilities conduct personal relationships and develop sexual behaviour”.

The Fish Police perform at a recent gig
The Fish Police perform at a recent gig

On Wednesdays until the end of August, Tunnel of Love will also feature live performance from a host of Heart n Soul artists, there are sessions from the likes of artists like singer Tilley Hughes (pictured) and the project includes the chance to catch three-piece band The Fish Police (pictured). For full information, check the Heart n Soul website.

The festival and related events run until the end of August and the charity’s annual club night multi-media extravaganza, the Beautiful Octopus Club will be back at the Royal Festival Hall on Saturday 6 September for the sixth year running.

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

Social networks and mental health: supportive environment or a stalking ground for cyber-bullies?

Bullying crushes a child’s self esteem and confidence. It can leave a child feeling alone, totally helpless, and with no one to turn to. In their childhood innocence and naivety some even blame themselves for their torment. Many schools now have robust anti bullying policies in the form of bullying charters.

We live in an age where teachers acknowledge widely the emotional needs of children more than ever before. Resources such as SEAL (social and emotional aspects of learning) provide increased emotional support in many schools.

As a consequence bullying has now left many classrooms, but not all. This is commendable but, not only do schools’ attitudes and actions in response to bullying vary considerably, is it enough?

And now in the age social networking sites it has insidiously entered the sanctuary of children’s bedrooms. Running away from the school environment and threatening bullies now leads straight to the bedroom, a once safe haven where a child’s computer suddenly provides no way of escape. Computers are the contemporary child’s toy and some may say the innocence of youth has died as a result. This year’s forthcoming Anti-bullying Week, for example, has a special focus on cyber-bullying.

These issues have been on my mind since the death of 14-year-old Hannah Smith who suffered relentless bullying online. Her death was not a stark reminder of how vulnerable our children are not protected from bullies even in the supposed safety of their own homes. There has been intense speculation and much knee-jerking as a result of her death, but the bottom line is that social media played a part in her suicide. Whatever happened, she was a vulnerable child.

But social networking sites can be so liberating for many providing an outlet for those who lack self confidence in face to face interactions and who might have smaller social networks than usual. Many can make friends and form relationships online that they would otherwise struggle to in school.

These sites can be very helpful, especially for those who lack social contact, or may have poor social skills, agoraphobia etc, but the flip side of the coin is the bullying issue. Reaching an acceptable compromise regarding social networking will not be easy because the genie has now been let out of the box, so to speak.

When experiencing low moods, your reality becomes alien to that of everyone else. I have always advised people to seek help at the earliest opportunity to prevent depression reaching this critical stage. And this is where social sites that support mental health can help.

There is the social site launched by comedian Ruby Wax, for example, Black Dog Tribe, “a place in which like-minded people can find their own ‘tribe’ and share experiences in a supportive online community through forums, blogs, daily news and mental health information”. Another example is Kent and Medway NHS Trust, for example, which is piloting Buddy, an online system that records mood changes. And there are a raft of support-specific online forums linked to various charities and support groups which can make all the difference to vulnerable people.

This is the positive aspect of these sites.

Yet it is too simplistic an argument that social media and networks alone can help prevent depression. An holistic approach can include talking therapies, physical exercise and medication, if appropriate. These therapies can support each other – medication, as I know from personal experience and from my nursing career, has its down side. It can also make your mood fluctuate wildly, become disinhibited and even suicidal. Having easy access to online support can, at times like this, be vital. These issues are brought into sharp focus by the news today that the number of people needing treatment for mental health issues will have increased by more than 2 million by 2030.

We should look closely at both the negatives and positives about social media and networks in relation to mental health – and ignore them at our peril. While it is also wrong to assume that social media alone can push someone towards mental health problems, excessive use of social sites, as is often reported, can itself lead to problems.

Children sitting for hours in front of a screen removes them from the social contact of others that will improve their face to face communication skills and confidence in later life. Effective communication involves eye contact, body language, and gesturing. All ignored when lying in bed hitting a keyboard in silent and lonely surroundings.

Cyber bullies and unpoliced social media sites populated by children (or those posing as children) are not part of a civilised society. We must make it all stop. Now.

Teens teach peers about respect and relationships

Oii My Size, a web-based project to raise awareness about respect in teen relationships
Oii My Size, a web-based project to raise awareness about respect in teen relationships

Late night on the estate, London. Two hooded and capped teen boys hang out, waiting for a couple of teen girls. Nervously the girls approach. Tiana used to go out with Stigz, but she’s not sure about this new guy he’s brought along. She thought they were going out to a party, but the boys lead them to this new guy’s place. His parents are out. Tiana fights her instincts to run. The door shuts. The boys start to grab them. The girls resist but they won’t stop. Everything happens so fast…

Thankfully these events are just part of an awareness-raising film for Oii My Size, a youth-led project targeting teens. The Oii My Size project. For those not down with the kids, “my size” means “my kind of girl”. The project is based on a colourful website full of videos and pictures to help teens understand what makes relations between teen boys and girls appropriate and respectful.

Storyboard-2b

The scenario described above is, however, based on a true story and reflects the reality of life for many teen girls. From serious assault like this, to sharing naked pictures of them (sexting) and being spoken to disrespectfully, life can be a minefield for girls when it comes to teen boys. A recent study by the NSPCC reported up to 40 per cent of young people had been involved in sexting, mainly under pressure from other schoolchildren while a conference in Manchester run by the area’s Safeguarding Children Board heard reports from schools that sexting had become a “daily problem” affecting girls as young as 11 years old.

No one knows this better than the group of 12 teen girls who have shaped Oii My Size.

The girls, aged 16, from Pimlico, London, met to socialise until becoming involved in a Peabody Staying Safe campaign. The girls had previously worked with youth arts company Dream Arts to produce a warning video about staying safe around boys and jumped at the chance to spread the message about safe relationships and the dangers of sexting (sending indecent images to an under-18 is illegal). The video, which starred the girls themselves, is now on the Oii My Size site.

All of the girls had some kind of personal experience with the topic – whether affected directly, like the events in the video, or having friends who had to move schools due to sexting, or being exposed to abuse such as a Blackberry Messenger “slags list” – where girls are publicly named and shamed.

The girls were supported by Peabody, Dream Arts and youth-led media social enterprise Mediorite, which I volunteer with. Peabody worked with the girls under its Staying Safe campaign, Dream Arts supported them to work together and provided them with a specialist support worker for two hours each week after school.

As well as tackling issues such as sexting , Oii My Size focuses on disrespectful chat-up lines (or “churpz”) and when to say no in teen relationships. The magazine-style website also has light-hearted videos of teen boys trying out their best (read:worst) churpz on the unimpressed girls, like “Do you work at Subway? Cos you got me on a foot-long” and invites users to “rate my churpz”. This cleverly avoids preaching by demonstrating that the disrespectful churpz just make girls feel embarrassed, intimidated and degraded. In other words –boys- they do not work.

oimysize_screengrab

The website also contains a video of Althia Legal-Miller, a doctoral research student at King’s College, London, and an expert in female adolescence and violence. She explains the dangers of sexting, promoting the key message of “trust your instincts” to teenage girls in relationships.

The girls behind the project say they “have chosen this topic as we have realized that we feel intimidated and disrespected due to our gender.” Team member Shanice George explains that “hopefully the website will educate young girls and boys that sexting is illegal, cos we didn’t even know it was illegal until we started the project, and if we didn’t know how were other people to know? Also we wanted to educate boys on how they talk to girls… and we are now working with a domestic violence woman from Peabody and we would like to make girls aware about domestic violence too.”

Lucy Ferguson from Mediorite adds that the girls felt the topic “was a real, urgent issue that just wasn’t being tackled at school, and that no one was tackling it…The project was a success because the girls really challenged themselves to think about the audience.”

The girls not only gained new skills from the project but also won a Silver Arts Award, an Open College Network accreditation in project management via Peabody and a Nominet internet safety award. The website got 2000 hits in 24 hours the day after they won the award, and has been promoted at school assemblies by the girls to over 3000 people.

The project’s audience will undoubtedly grow, as Lucy Ferguson explains: “Most youth groups don’t really explore what someone who doesn’t know them is going to think of their project, they don’t think about how to sell and engage the audience, but these girls really got that. So ‘rate my churpz’ – as a traffic-driver is a really sophisticated idea. It shows they understood the need to engage boys too, and draw people in with a sense of humour, and then engage them with the harder content. Most youth groups are completely unforgiving to the audience. This was a much more sophisticated approach.”

A perspective on the Paralympics

Singer and rapper Dean Rodney, part of the Games Through Our Eyes website
There’s no shortage of media coverage of the Olympics and Paralympics, but one new online platform offers a unique and important perspective on the games.

Games Through Our Eyes is an accessible website for the 2012 Paralympic Games created by young reporters with learning disabilities. The team is supported by arts group Heart n’ Soul and social enterprise communications agency Poached Creative.

Games Through Our Eyes is covering wheelchair rugby, the three Paralympic sports open to people with learning disabilities (swimming, athletics and table tennis) as well as the Cultural Olympiad. This year is first time in 12 years that people with learning disabilities have been allowed to compete after Spain’s basketball team faked their disabilities in the 2000 Sydney games.

The reporting team includes Dean Rodney, a 22-year-old singer and rapper with autism whose audio-visual project, the Dean Rodney Singers, is part of the Cultural Olympiad. Dean, who has honed his performing talents through Heart n’Soul and who I’ve blogged about before, is part of the Unlimited showcase at London’s Southbank Centre starting today. Unlimited is staging cultural events alongside the Paralympic Games, having made major new commissions in disability, arts, culture and sport (for artist Rachel Gadsen’s contribution to the Cultural Olympiad, for example, see this previous post).

As far as the new website goes, Lilly Cook, one member of the reporting team, says the aim is for everyone with disabilities and learning disabilities “to be able to find out about them and all the other amazing things going on around them.” As Lilly adds in a recent blogpost: “Paralympic sports are just as exciting, professional and emotional as the Olympics.”

Alongside Lilly and Dean, the other reporters are Nicola Holley, Poppy Collie, Shalim Ali, and Laura Jarvis.

Expect some good coverage of Dean’s installation; the Dean Rodney Singers is an international digital collaboration of 72 musicians and dancers with and without disabilities from countries including Japan, China, South Africa, Germany, Brazil, Croatia and the UK. Their online interaction results in new music, dance and video and 23 of their pieces will be launched at the Southbank Centre today, with audience participation promised through interactive technology (the idea is viewers and listeners engage with the performers).

As well as the Dean Rodney Singers, other Heart n Soul artists perform in events during the Paralympics – the fabulous Lizzie Emeh at the Trafalgar Square Live Site this Sunday – fresh from accompanying Beverly Knight at the Paralympics opening ceremony – and The Fish Police (which Dean Rodney also fronts) at the Potters Field Live Site on Monday. The arts group’s spectacular multi-media club night The Beautiful Octopus Club (created by and for people with learning disabilities) is on Friday 7th September at Southbank Centre, the final weekend of Southbank’s Paralympic Games celebrations.

Keep up with the news on Twitter by following the Games Through Our Eyes team at @ourparagames

Face the facts, not the film fiction

It’s an uphill struggle for those with so-called invisible difficulties (people with conditions on the autistic spectrum, for example,) to achieve mainstream representation or indeed capture the attention of broadcasters, newspaper editors, politicians and the public.

So imagine the challenge for those with more visible differences.

If you see facial disfigurement in movies, its usually a handy hint just in case you have trouble figuring out the baddie (think Nightmare on Elm Street’s Freddie Kreuger and just about every Bond villain). Trying to see if I could disprove this theory, I randomly remembered Liam Neeson in Darkman – scarred, with a grudge, ultimately fighting for justice – but then looked up the tagline” “hideously scarred and mentally unstable scientist seeks revenge against the crooks who made him like that”. Ouch.

Movie memo to kids (they might not know Freddie Kreuger but you can be sure they know Batman’s The Joker or Harry Potter’s Voldemort): look bad on the outside, and you’re bad inside.

Today, Changing Faces, the charity for people and families whose lives are affected by appearance-altering conditions, marks or scars, launches a nationwide film campaign. Please watch it, it’s powerful, elegantly produced and only a minute long.

You might already have spotted the charity’s poster campaign not so long ago which aimed to stop people in their tracks long enough to make them think (instead of simply staring). Today’s Face Equality on Film campaign, it is hoped, will go some way towards tackling the prejudice and crass assumptions experienced by people with facial disfigurement.

The campaign calls for balanced portrayals of people with disfigurements on screen and the film, which will be shown in 750 Odeon cinemas, invites audiences to challenge their assumptions about Leo Gormley, a man with burn scars. It also stars Downton Abbey actor Michelle Dockery.

As a teenager in the ’80s, my first foray into the mind-boggling world of skincare and “beauty” products involved a desperate desire to cover barely perceptible blemishes, inspired by the seemingly zit-free stars on my Smash Hits front cover. But since, then the concept of “beauty” has become even more extreme, and digital wizardry can clear imperfections in the blink of a heavily-made-up eye.

I’m conscious that my seven-year-old daughter, for example, is growing up in a media environment dominated by images of identikit, airbrushed, photoshopped lovelies projecting an unobtainable and flawless version of “looking good”.

In a world where older women are elbowed off the television news because their faces, rather than their news judgement, start to sag, what hope for those whose features even further removed from what is deemed be aesthetically pleasing? Changing Faces has already worked with Channel Five news to shatter such stereotypes.

But if women, ethnic minorities and people with disabilities are under-represented in television, then people whose differences are more obvious are, ironically, even more invisible.

And if facial differences feature on television, they do so in a medical capacity, in documentaries that present abnormality as something to be gawped at or “put right”. While the concept behind The Undateables might have been well-intentioned, it was the title of the show that put me off.

As Changing Faces’ chief executive James Partridge said in response to that Channel 4 series: “TV series with derisory titles makes life just that bit more difficult – it’s so unnecessary and it’s unfair. Very good factual and sensitive documentaries on disfigurement-related topics are frequently spoiled by offensive titles such as ‘Freak show family’, ‘The man with tree trunks for legs’ and ‘Bodyshock’. They are contrived to attract audiences but actually label the human being in the film in a sensationalist and voyeuristic way, treating him or her as an object rather than a person.”

At the risk of getting sidetracked down this road, I remember gritting my teeth a few years ago to get past the utterly ludicrous title of The Strangest Village in Britain. It was, was in fact a sensitive portrayal of life at Camphill’s Botton village which featured much of the good support that has made a difference to my family’s life – not that you’d know that from the objectionable title.

Back to today’s campaign launch; a YouGov survey of 1,741 adults commissioned by the charity last month found that bad teeth, scars, burns and other conditions affecting the face are viewed as the most common indicators of an evil film character. According to the poll, ethnic minorities, bald and disabled people are all thought to be portrayed in more diverse ways than those with disfigurements.

Responding to the poll, 66% said people with bad teeth mainly play evil characters
and 48% said that people with conditions altering their appearance mainly play evil characters. Meanwhile, 30% said that bald people mainly play evil such roles compared to 13% who felt those from ethnic minorities mainly portrayed bad characters.
Interestingly, 6% said that people with physical disabilities (in a wheelchair or have missing limbs) mainly play evil characters.

Partridge adds of today’s campaign: “It would seem as if all the film industry has to do to depict evil and villainy is apply a scar or a prosthetic eye socket or remove a limb and every movie goer knows that it’s time to be suspicious, scared or repulsed…Freddie Krueger, Scarface and Two-Face are just some of the names that our clients get called at school, on the street and at work. They have to put up with people laughing at them, recoiling, running away or staring in disbelief that they can and do live a normal life.”

* You can sign the charity’s online petition demanding an end to the stigma reinforced on screen.

Writing about wrongs: can social affairs journalism make a difference?

Louis Tickle, freelance journalist
As a journalist writing on social affairs I often wonder if my articles make any difference or whether this kind of journalism is essentially exploitative. The dilemma isn’t original. Journalists and photographers struggle with it all the time. Mostly I ignore it. But it niggles.

So, I’m commissioned by a children’s charity to interview a single mum it’s been working with. She’s got five kids; black mould spreads thickly across her kitchen ceiling and down the back wall. One of her daughters, a little girl with asthma, sleeps in a pink bedroom so icily cold I feel my skin shrink when we look in. A single photograph of a baby lost to cot death is unobtrusively placed among the many pictures of her other children displayed in the front room.

There’s a housing association building site at the end of the terraced row, but this woman can’t get hold of the £400 she needs to secure one of the warm, dry family houses that will soon be available.

I write my piece feeling angry and hopeless. My fee is more than the money she needs for that deposit. I wrestle with the thought that I should give it to her. I don’t.

A year on, I still wonder if I should have done. This is hardly war reporting, but these are people living on a front line. They’re who I write about. And then I disappear off, my notebook full, my deadline pressing. I rarely see them again.

Does this kind of journalism change anything? I don’t know. It’s what I do, what I can do, what I have time to do. I know it’s not enough.

Though what’s playing out in the Leveson enquiry means that rotten practices are being dragged through the mire, the level of underlying suspicion about journalism saddens me, because it’s based on a misunderstanding of what any kind of serious journalism is about.

I don’t do this job because I want to stiff as many people as possible in the name of selling papers. I do it because stuff goes badly wrong in certain bits of public life, and in the small way that writing articles allows, I want to ask why – then persuade, cajole, flatter or embarrass people into giving me the answer.

The judgements I make in writing a piece may be taken fast, but they aren’t taken lightly. For instance…

I’m constantly examining the ethics of how I go about writing a piece. Particularly if an interviewee is vulnerable or not media savvy, I know that I can’t get across their tone of voice, or give every bit of background about their situation, so which quote I pick really matters.

I’ve written a fair bit about young single mothers. Asked why they got pregnant, why they chose to keep the baby, how they manage. And sometimes you’ll get a teenager replying along the lines of: ‘Some girls do get pregnant to get a council house, yeah, absolutely.’

What do I do with that? I know those words will make a strong headline. But if I use them rather than the less instantly “good value” comments, I don’t do this young mother’s entire situation justice. So I will think very, very hard about how to treat that kind of quote, and whether to include it at all.

Occasionally, I do stuff I know an editor wouldn’t like. National news organisations do not give interviewees the chance to see or approve copy before publication. There are practical reasons for this – deadlines, for example – but mostly, it’s about retaining editorial independence. Otherwise people ring up and say, “actually, I’d prefer it if you didn’t write about such-and-such a thing I told you about, it’ll make life really awkward.”

That, I’m afraid, is tough. If you don’t want me to write something, then don’t tell me, or alternatively, negotiate when you want to go off the record carefully and in advance.

But when a charity puts me in touch with someone struggling to rebuild their life, and they talk frankly about the hell they’ve been through, I’m aware a clumsily phrased comment about their situation could knock their confidence at best and make life even more difficult for them at worst. So sometimes I will read back quotes to an interviewee to make sure I have accurately reflected their views and they’re happy to go public with them.

On one occasion, I spent an afternoon with a young recovering drug addict who had spent four years on the game to fund her and her former boyfriend’s habit. She’d had her eldest daughter taken from her by social services: now pregnant again and with a new partner, she was on track to being allowed to keep her baby.

Given what she told me about the horrors of her previous lifestyle and job, I don’t know how she’d found the strength to kick her habit, but I was damned sure that nothing I wrote was going to set her back. The finished piece was written entirely in the first person; the risk of misrepresenting someone when you do this is real, no matter how good your intentions.

So I sent her the finished piece to look at. In this specific situation, editorial independence wasn’t going to trump her right to have her life described accurately and in a way that wasn’t going to put her recovery at risk.
Unlike many ‘important’ people who cavil at tiny bits of phrasing, this woman didn’t ask for a single change. And when my editor told me to go back and ask her a question – how much did she charge for each particular “service”? – (something I regard as the low point of my journalistic career) she didn’t get offended or slam the phone down. She told me. And, as I was finishing the call, she said thank you.

I loved doing that piece of work. The access and insight journalists get is central to why I am still entranced by this job.

But returning to my original question, does this kind of journalism change anything?

Well, that piece was published in The Times. A lot of people would have read it. The charity that supported her would have got some publicity.

What they really needed though was money to support more girls as they tried to get off the game. Maybe the piece helped them twist a few funders’ arms. Whatever it did, it’s nothing in comparison to the work done by dedicated experts at the coalface of disadvantage, poverty, suffering and violence.

When I try to answer the ‘does it make a difference’ question, I feel a bit like when you donate to charity online. Do you pick £2, £10, £25 or a bigger sum that means you won’t be able to buy that dress you had your eye on? Whatever you put is something, but it’s probably not as much as you could have given, and it’s certainly never enough.