Category Archives: media & communication

Social inclusion, sewing patterns and silver linings

Social inclusion: being "more busy" with people, places and projects is vital
Social inclusion: being “more busy” with people, places and projects is vital

“More busy”. This quote from Kelvin Burke of Rocket Artists reflects what people with learning disabilities need in order to be more included in society; people want to be busier with opportunities to do, make and see more things, to have more time to spend with people (incidentally, that’s people who hang out with you by choice and because they share your interests, not simply because they’re paid to support you).

Kelvin shared his words at a Tate Modern seminar on inclusive arts that I was involved in earlier this week. The event’s title – “a research discussion bringing together practitioners and academics to explore issues around inclusive arts practice” – doesn’t do it full justice.

This engaging, creative, interactive, collaborative and fun event (yes, fun! There was golden ink! Stickers! Sewing patterns! And cake – both drawn and real!) encouraged participants (academics as well as artists and performers with learning disabilities and without) to explore the barriers to social inclusion, within the context of the arts sector.

People on the table I chaired talked about what stopped them from being more involved in society as well as what needs to happen to change that.

Although these issues are something I’ve looked at before (see, this piece or an opinion piece here about the unequal treatment of learning disabled people), until Monday I’d not explored them with marker pens, golden ink, coloured stickers, gargantuan Post-it notes, A4 size speech bubbles and dressmaking patterns.

But there’s a first time for everything (and now I only ever want to write in golden ink).

More seriously, the method and materials were necessary if the discussion about access and inclusion was to be accessible and inclusive, so everyone had an equal opportunity to contribute thoughts, words, doodles and designs.

I can’t faithfully describe all the challenges and solutions identified in a room buzzing with the ideas of around 50 people, but a few ideas are captured in the images on this page. (unfortunately I wasn’t able to take a shot of the “Bolloxometer” designed, I believe, to slice through meaningless rhetoric purveyed by those in authority, but I’m first in the queue for this should it ever go into production).

Segment of a sewing pattern for a coat, decorated with hopes and solutions for the future for people with learning disabilities
Segment of a sewing pattern for a coat, decorated with hopes and solutions for the future for people with learning disabilities
People with learning disabilities should be seen as people first, with potential and talents, rather than being defined by their support needs
Another segment of the coat pattern, reflecting how people with learning disabilities should be seen as people first, rather than being defined by their support needs
One idea to help celebrate differences...
One idea to help celebrate differences…

Time was, however, a big theme for discussion. Those who work with people who have learning disabilities said they wanted more time for sustainable projects (rather than be caught in commissioners’ and grant-makers’ short-term funding cycles). People with learning disabilities said they wanted more time to do things they enjoy, as Kelvin said.

Words like “equality”, “access”, “value” and “listen” cropped up a lot. As did the importance of celebrating differences and valuing people for what they can do, not defining them by what they can’t. While the challenge of funding and cuts (both to social care and the arts sector) was a major concern, people were generally unwilling to focus on money alone as a problem or solution, when so much rests on changing the perception of people with learning disabilities.

Barriers to people with learning disabilities being included in society
Barriers to people with learning disabilities being included in society

Rocket Artists performed towards the end of the day, captured in this lovely shot shared on Twitter by Brighton arts organisation Phoenix:

The event also included the launch of a thought-provoking and beautifully produced new book, Inclusive Arts Practice. Authored by the University of Brighton’s Alice Fox (also artistic director of Rocket Artists) and Hannah Macpherson, it was created through interviews with and guidance from learning-disabled and non-learning-disabled artists. The book looks at inclusive arts – defined as “creative collaborations between leaning disabled and non-learning-disabled artists” – and its “socially transformative potential for collaborators and audiences”.

It addresses difficult questions, such as the differences between art therapy, occupational therapy and inclusive arts and clearly sets out the practical steps to create more collaborative art. The book acknowledges the fact that the term inclusive arts “presupposes exclusion” and asks how such collaborations between artists of different abilities can have real, cultural value (something I’ve blogged about before and which the Creative Minds project is exploring).

The book makes a persuasive case for everyone to have a cultural life in their communities; Southbank Centre director Jude Kelly, for example, comments in the book on how “we believe in cultural rights as a profound part of human rights”. Creative collaborations with the use of time, trust, skills and choice, are presented as “a force for societal good”:

“People with learning disabilities tend to be undervalued members of society, are much more likely to live in poverty, and are much more likely to suffer hate crime than their non-disabled counterparts. It is estimated that around 1.5 million people in the UK have a learning disability and over 3,000 of these people have spent over a year in an ‘assessment centre’, often a long way from family, and which is not designed to be a permanent residence. Many people with learning disabilities do not have access to any regular creative leisure activity outside their residential environment, despite the proven benefits of such activities for health, well-being and resilience…”

Inclusive arts can make audiences “feel differently about the people whose work they see and they can feel differently about themselves”, that is one powerful message in Inclusive Arts Practice.

Which is why the inclusive arts movement has an important place when it comes to equality for people with a learning disability. “We want greater powers to be seen, to vote, to be included, have the same opportunities in social life, education and employment as everyone else,” as campaigner Gary Bourlet says, or as the rights set out in the campaigning LB Bill show).

As for the sewing pattern that everyone contributed to on the day, one stylish spark made the beautiful observation that the final garment, emblazoned with words and images setting out some ways to break down social barriers, should have a sliver lining; the team from Brighton now plans to make the dream coat a real life action mac.

I can’t wait to see it.

Photographs offer fresh perspective on disability

Alliance by Tim Beale
Alliance by Tim Beale

Depictions of friendship, cityscapes and natural images are among the powerful photographs in an international arts competition reflecting the world from a disabled person’s perspective.

Photographers with Down’s syndrome from the UK, Greece, Japan, New Zealand and America have entered the Down’s Syndrome Association’s annual My Perspective competition which, this year, challenged people with the learning disability to go behind the lens.

As the association says: “In years gone by, people with Down’s syndrome were photographed as exhibits; the viewer was not supposed to see the person, just the difference. The Down’s syndrome Association’s My Perspective competition turns the camera around and gives people with Down’s syndrome the chance to show the world from their point of view.”

I’m sharing some of the 25 shortlisted images in the competition, which was launched in 2010, here (more can be seen here) and the winner will be announced on 11 June by a panel of judges including photographer Richard Bailey, curator of the groundbreaking Shifting Perspectives project.

The pictures reflect a beautifully wide range of subjects.

Ready for a ride, by Daniel Harrison
Ready for a ride, by Daniel Harrison
Coco by Kyle McKay
Coco by Kyle McKay
Blue Body, by Rory Davies
Blue Body, by Rory Davies
The Old Tree, by Emily Buck-
The Old Tree, by Emily Buck-
The Park, by Takis Koumentakis
The Park, by Takis Koumentakis
Swimming with frogs, by Klay Green
Swimming with frogs, by Klay Green
Cheeky Robin, by Steven Padmore
Cheeky Robin, by Steven Padmore
Shadow Stories, by Lillie Davies
Shadow Stories, by Lillie Davies
Hello, by Takeo Niikura
Hello, by Takeo Niikura

Crowdsourced art project maps our democratic history

Digital art project Democracy Street allows users to share pictures taken on mobiles.
Digital art project Democracy Street allows mobile users to share pictures reflecting the country’s parliamentary history.

With the election a few weeks away, democracy is the timely subject of a new digital art project designed to shed light on Britain’s parliamentary history.

Democracy Street is curated by artist Jon Adams who has Asperger’s syndrome – a form of autism – and I wanted to briefly mention the crowdsourced project today, on World Autism Awareness Day. Adams’ work focuses “on arts sciences and creativity as a person with Aspergers, including synaesthesia, systemising and sequencing”.

Participants in Democracy Street can use mobiles to take photos that contribute to the digital project.
Participants in Democracy Street can use mobiles to take photos that contribute to the digital project.

The Houses of Parliament have commissioned the project with support from The Speaker’s Art Fund and Arts Council England. A mobile web app allows users to explore and discover streets that have a connection to democracy and upload their own images. Images can include, for example, streets that share the same name as a Parliamentarian or that reflect events in democratic history. Adams will use the data generated by users to create new artistic maps of the UK and as users upload information, it appears on the web app, so you can see the crowdsourced project developing in real time.

The participatory scheme also coincides with the 800th anniversary of Magna Carta and the 750th birthday of Parliament.

More information here.

Mental health on TV: entertainment vs realism and sensitivity

If someone’s arm was broken on TV we would see it bandaged up. If someone had diabetes we would see them receiving insulin. If we see someone had a heart condition we would see them wired up to an ECG machine.

So why when we see people displaying symptoms of mental illness do we usually see this depicted as violent or histrionic, with a focus on the challenge and not the solution?

Christmas is next week – a time of year that can brings an unbearable pressure to people with mental health issues. We are all very familiar with seeing mental illness portrayed in cliched, negatively stereotypical ways on our TV screens. The storyline involving the character Steve McDonald’s unfolding depression in the TV ‘soap’ Coronation Street is generating much interest currently .

I am watching closely as this storyline unfolds, not least because we at Time To Change are advising on this to try to ensure as much sensitivity and realism as possible.

Although only in the early stages of the illness, Steve’s behaviour is causing both consternation and confusion for those close to him, and not so close. People are trying to make sense of it all at the moment. Classic symptoms pointing to clinical depression can often be overlooked in the early stages. The programme is cleverly highlighting this and showing the insidious nature of the illness.

I believe it is all around finding the right balance between providing drama for the viewers but also ensuring mental health is not further stigmatised through lazy, damaging scriptwriting. It is a win-win situation for everyone to have mental health storylines depicted with responsibility, authenticity and maturity:
• viewers will gain more awareness of symptoms and treatment
• the programme will receive positive publicity for the research and efforts made
• a powerful anti stigma message will be ultimately delivered.

It is critical to present as authentic a picture of mental health symptoms and treatment as possible to de stigmatise mental illness. The media plays a role that must never be underestimated. It will educate and challenge opinions, it will inform. The viewers opinions and impressions are often influenced by what they see and hear on their TV screens. In advising on the Zak Dingle depression storyline in Emmerdale, I was at pains to reinforce how the illness not only impacts on the sufferer but also the family and significant others.

This is the reality.

The person who is ill does not usually suffer alone, their families/partners have usually cared for them before they seek help and continue to provide care afterwards. I will be watching the Coronation Street storyline to see how those near to Steve are effected by his own deterioration. It must also be realistic in showing the time span of the illness. It would be ludicrous for the viewers to see a decline into severe clinical depression undermined by a miraculous recovery within weeks.

Unfortunately drama that portrays a swift recovery only serves to misinform and mislead. Realism and credibility is then left on the cutting room floor. This is why good research is the key alongside learning the lessons of the past. Lessons need to be learnt and I strongly believe this will be the case in the Coronation Street plot.

Recent research by Time To Change has shown that attitudes are changing as a consequence of responsible media portrayals of mental health. We must not become complacent though and continue to build on the good work so far.

Coronation Street is a very popular soap. Many will be watching for the drama and entertainment element, while others will be scrutinising closely to look for a positive, realistic depiction.

I want these reasons to combine.

I hope nobody is left disappointed or disillusioned. I am excited by this storyline and so should others be. Excited because the storyline will, if successful, leave a seed of hope and a motivation for change in everyone’s minds. That seed will eventually grow into a realisation that when covering the topic of mental health, it is crucial this is responsibly portrayed in the media.

Eyesore to eyecatching: art transforms boarded up London shops

Shoe shop: an empty unit in Streatham, south London, gets a makeover.
Shoe shop: an empty unit in Streatham, south London, gets a makeover.

I usually run a mile from any sniff of a town or city rebranding (anyone remember “Staines-upon-Thames” or indeed “Proud to be Slough“?).

But I’m interested in the bold focus on street art and local artists in the drive to return a sliver of London to its retail glory – “Streatham – the West End of South London” no less.

Streatham architects and design company, Beep Studio, is collaborating with the local Business Improvement District, InStreatham, to create a “voids trail” that reflects the area’s local personalities “in a bid to encourage more people to explore Streatham High Road”.

The campaign features artwork on shop fronts inspired by seven famous celebrities who lived in Streatham – shoppers will explore the area’s shops via the trail, visiting each unit and stamping their trail maps to show they have visited the shop.

No prizes for guessing which South London-born model inspired the vertiginous platform depicted on one empty front.

I’ve fond memories of the longest high street in Europe (Streatham High Road), up the road from my former home in Brixton – oh, sorry, of course I mean “Brixton Village”.

Anyway, in terms of the Streatham campaign, I like the idea of the installations and light displays by local artists that accompany the campaign. This all coincides with Small Business Saturday, a non-political drive to encourage people to shop locally.

The Streatham shopfront trail launches on Saturday along with the Christmas light switch on.

Exhibition: how young people with a learning disability picture themselves

Chim, in a photograph for the halow project's new art show (pic: Kitty Day)
Chim, in a photograph for the halow project’s new art show (pic: Kitty Day)

Young photographer Kitty Day, whose sister has a learning disability, wanted to to offer an alternative way for her sibling to express herself – visually.

The result is an exhibition of photographs, entitled This is me, my Voice, my Choice, involving her sister and other young people supported by the Surrey-based charity halow (sic). The show, which opens today, includes portraits of the young people where they present themselves purely as they wish. I’m sharing two of the images, of Chim and Tommy, here.

Tommy, photographed as part of the halow project's new exhibition (pic: Kitty Day)
Tommy, photographed as part of the halow project’s new exhibition (pic: Kitty Day)

Some participants also altered their images with colour or other materials (images not included shown) “to show themselves as they wanted to be seen”, says the charity which works with young people aged 16-35.

Young people from the halow project (pic: Kitty Day)
Young people from the halow project (pic: Kitty Day)

halow, based in Guildford, supports young people with a learning disability “to have the same life choices and chances as any other young person”.

“I wanted to give them the power to express their personality and who they really are, without someone trying to do it for them,” adds Kitty.“I had little control in the studio but I had even less in the editing. The project was done in two stages – one when the group visited me at the studio at City of Westminster College. The second stage was when control was totally given to them. They had a day to personalise their images through cutting, sticking, colouring – whatever they wanted, and I saw the photographs change completely and come to life…I learnt so much about the young people, their perception of themselves and the power of control.”

The exhibition also includes paintings where people depict themselves as a superhero of their choice.

* The exhibition runs at St Mary’s church, Quarry Street, Guilford, from Tuesday until Thursday – contact halow for opening times. Entry is free, says the charity, but donations would be appreciated. On Friday, the exhibition changes venue and culminates in a choir concert at Holy Trinity church in the High Street. Tickets cost £10.00 and are available from halow or tickets can be purchased from the Tourist Information Centre in the High Street.

Disability: trailblazing technology vs. the computer (store) says no

Products designed by disabled students using SHIVA, a pioneering 3D design and print system (pic: Livability)
Products designed by disabled students using SHIVA, a pioneering 3D design and print system (pic: Livability)

Right now feels something like a pivotal moment in disability rights – and specifically for people with learning disabilities – I state this cautiously because we all know that grand plans and wise words still need to translate into deeds.

If you’ve been following the debate about turning the rhetoric of community integration into reality and the plans to tackle the failures in supporting people who have a learning disability, you’ll know there’s a massive gulf between what should happen and what actually happens; between what national policy sets out as “good practice” ideals and what takes place on the ground.

This was brought home to me not only through what I’ve been researching and writing recently, but when I was told of the experience of a group of young people with complex physical disabilities in south east London.

The group from Family Link, Bromley, a charity that offers supports outside school and at weekends, visited a computer store on a Saturday morning. They were looking forward to seeing the latest gadgets and testing some of the equipment on display.

But,they were barely there a few minutes when they were asked by a member of staff to “move on” if they weren’t actually buying anything – despite the fact that there were plenty of their (non-disabled, non-wheelchair using) peers browsing just as they were.

Computer says no.

In fact, the computer your face/body doesn’t fit – so get out.

The group leader protested but, clearly made to feel unwelcome, they left. The charity has since complained to the company, which has apparently noted its objection. Family Link is awaiting a reply. The organiser of the group says she still feels cross thinking about it several days after the event.

She’s not alone, it’s hard not to feel angry about incidents like this, where people with disabilities are made to feel inferior or unwelcome in public places – as I know and have blogged before. And how ironic that the charity had the misfortune to meet such a backward-thinking dinosaur in an evnironment championing the forward-moving digital world.

I won’t name the store here as I’ve not approached it for comment, so to point the finger at the company without offering a right to reply would be shoddy treatment (though, for the record, not as shoddy as the two fingers apparently flicked at the vulnerable young people simply enjoying a morning out).

Maybe there was a misunderstanding. Maybe it simply a rogue sales assistant who didn’t know his Disability Discrimination Act from his disk drive. Maybe there’s lax management at play that allows such attitudes to prevail.

Or maybe it’s because, as I’ve blogged before, despite years of good practice, policy and guidelines, the real pace of change out here in the real world for people with complex needs is slow.

The computer store incident is also regrettable, given what technology offers not only through its assistive form but through its educational benefits (in fact a new report today from the National Literacy Trust and Pearson underlines how touch-screen systems could tackle low literacy among boys and disadvantaged children). There’s the social aspect to technology too; something as simple as a smart phone allows easy use of text and email, for example, meaning my phone-call shunning youngest sister and I can stay in touch more easily.

This stark contrast between practice and possibility was underlined when I heard of an innovative new technology enabling disabled children to design and print objects in 3D – using only their eyes.

The SHIVA design and print system can be used by students with complex disabilities (pic: Livability)
The SHIVA design and print system can be used by students with complex disabilities (pic: Livability)

Disability charity Livability is currently using SHIVA (Sculpture for Health-care: Interaction and Virtual Art in 3D) at its Victoria Education Centre, a school for children with physical disabilities.

The ground breaking collaborative project was created by a group including Mark Moseley, assistive technologist at the school, the National Centre for Computer Animation at Bournemouth University and researchers from the University of Lille.

In a nutshell, “eye-gaze technology tracks where a user is looking and translates it into screen coordinates so that on screen cells or buttons can be selected”. Around 15 pupils with varying levels of disability have used the software and many models have already been produced.

3D design created by "eye-gaze" technology, used by students with disabilities supported by the charity Livability (pic: Livability)
3D design created by “eye-gaze” technology, used by students with disabilities supported by the charity Livability (pic: Livability)

The creators now hope that new funding can be found so that the software can be further developed and used by more young people.

I hope so.

More people with disabilities should – if they want to – be free to road test interesting existing and new technologies, trying out software in high street computer stores, for example, rather than being asked to leave them.

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