New campaign for autism-friendly libraries

Brody Ginn, who features in a training video to help create a network of autism-friendly libraries (pic: Dimensions)

Brody Ginn, in a still shot from a training video shot at Chelmsford library – the video is part of a new initiative to create a network of autism-friendly libraries (pic: Dimensions)

“Please be friendly and non judgemental. Don’t be shocked if I’m noisy and unpredictable. Smile, and please be nice to my mum, going out can be stressful for us all!”

“This is the way I am and sometimes I find it difficult not to talk to myself in the library so please be patient with me. Don’t keep staring at me. Please be kind to me.”

“Sometimes I can be noisy but I don’t like noise. Please don’t shush me or ask me to leave. These things hurt my feelings and can make me noisier. Be patient. Maybe even provide a small sensory room with soundproofing so I can calm down safely without causing problems with noise in your quiet library.”

These are among the comments made by people with autism as part of research that has led to a new campaign, launched today, for a network of autism-friendly libraries.

As I explain in a piece for the Guardian, a survey of 460 people with autism and their families by social care provider Dimensions suggests that 90% of people with autism would use their library more if adjustments were made.

Responding to concerns, Dimensions and the Association of Senior Children’s and Education Librarians (ASCEL) are collaborating to develop a network of autism-friendly libraries. The aim of the initiative – which is launching at the annual seminar of the Society of Chief Librarians – is to turn England’s 3,000 or so public libraries into more welcoming venues for people who have autism.

A poster available as part of the autism-friendly libraries campaign

A poster available as part of the autism-friendly libraries campaign

The drive, backed by £7,000 from the Arts Council, includes free resources for staff such as training videos, fact sheets, posters and social stories (short, informative descriptions of situations, so people know what to expect when they visit). The work in libraries builds on the model already developed by Dimensions with cinemas,

Being judged, being stared at or told to be quiet are among the main reasons people with autism and their families avoid going to their local library. “Libraries are quiet places so my son could make a noise and I would know others weren’t judging me as a parent,” as one parent told researchers developing the campaign.

In the current funding climate, with cutbacks to services and a downturn in borrowing, it makes financial sense to cater to more people, as well as creating a wider social benefit and encouraging inclusion and equality.

Libraries should be open to all sections of our communities, or as one person with autism explained about the experience of visiting the library: “Don’t tell me to shh! Or look at me like I am a criminal”.

* For more information about autism-friendly libraries follow #autismlibraries on Twitter or check the ASCEL or Dimensions websites

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‘She had a life worth living – she was comprehensively failed’

Robin Kitt Callender was 53 when she died following a treatable illness

Robin Kitt Callender was 53 when she died following a treatable illness

How do families of people with learning disabilities or autism feel they are treated by health and social care professionals? According to Karen Callender Caplan, who I interviewed for the Guardian, “You feel dismissed, you feel ignored … you have to gird your loins, you have to be ready to be bullish and persistent.”

Caplan’s sister Robin, who was severely autistic, had mild spina bifida and was partially sighted, died four years ago. She had been ill for over three months with intermittent vomiting and diarrhea, but the first her family heard of her condition was on the day before she died. In the months before collapsing at her Essex care home, the 53-year-old, visited her GP surgery six times and A&E twice. Yet her inflammatory bowel disease – a treatable illness – remained undiagnosed.

Despite says bereaved relatives must become campaigners, pursuing answers from disparate agencies.

An inquest last May at Walthamstow coroner’s court, in east London, concluded Robin died of natural causes contributed to by neglect, with expert witnesses noting missed opportunities to save her. However, there is be a second inquest this autumn as new evidence is to be presented about Callender’s medical care. The pre-inquest hearing takes places next week.

Caplan hopes the new development will reignite the family’s campaign for a “Robin’s law”. This would make it a criminal offence for a care home not to inform next of kin if someone they support, who lacks capacity to act in their own best interests, has an ongoing illness, and then dies. They also want there to be a duty on medical staff to inform relatives when treating such patients.

Equally important are more rights for the individuals supported so they have more control over their own lives. This is what the ongoing campaign for the LB Bill -sparked by the preventable death of Connor Sparrowhawk – would put in place.

Robin’s story is among the latest (but by no means the only) evidence that people with learning disabilities receive poorer care, are at higher risk of dying, and that professionals do not fully involve families in their care. To take just one example, data released to the Guardian under freedom of information showed that English hospitals investigated just 222 out of 1,638 deaths of patients with learning disabilities since 2011.

You can read the entire piece here.

* See more information about Robin’s Law on Karen’s campaign website or on Facebook

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Arts festival offers a focus on equal opportunities for disabled young musicians

Performers from integrated circus company Extraordinary Bodies will be at the Fast Forward Festival next week. The event will highlight arts accessibility and, hope campaigners, boost calls for a new centre for training for disabled young musicians.

Integrated circus company Extraordinary Bodies performs at the Fast Forward Festival next week. The event will highlight arts accessibility (pic credit: Rachel Lambert).

Across the country, there are a dozen government-funded centres for advanced training, providing specialist education for young musicians. But there is no such equivalent for their young disabled counterparts.

However, it is hoped that an arts festival, which opens next Friday, will strengthen a campaign for the first ever such facility for musicians with special education needs and disabilities.

Next week, Colston Hall in Bristol will be home to the second Fast Forward Festival, which champions accessible music making and arts. Performances include those from the Paraorchestra, the world’s first professional ensemble of disabled musicians, founded by conductor Charles Hazlewood in 2012. Integrated circus company Extraordinary Bodies is another headliner.

Extraordinary Bodies performance of Weighting Photo credit: Richard Davenport

Extraordinary Bodies performance of Weighting Photo credit: Richard Davenport

The return of the festival, which was launched last year, reflects the venue’s aim to champion arts accessibility and to contribute to a shift in perceptions of disability. As part of next week’s event, Colston Hall, run by Bristol Music Trust, is holding an exhibition involving the One Handed Musical Instrument Trust (the trust’s aim is to remove the barriers to music-making faced by disabled people).

Ruth Gould, artistic director of Liverpool based disability arts organisation DaDaFest, summed up the situation when I interviewed her recently, highlighting how negative assumptions about disability linger on in popular culture (“Lack of training, lack of educational opportunities, lack of work, lack of media and arts representation, demise of independent support, cuts in mobility allowance and personal assistance”.)

Colston Hall, run by independent charity Bristol Music Trust, wants to be home to the UK’s first centre for advanced training for disabled young musicians, both to encourage more opportunities for them to get qualifications and pursue a career in music, or just to be able to enjoy music. The aim of the campaign for a new centre, launched at the House of Commons earlier this year, is for the centre to train 2,500 young people from across England, and set a national benchmark for music accessibility.

Musicians at Colston Hall, Bristol

Musicians at Colston Hall, Bristol

The centre would form part of a £45m revamp of Colston Hall – Bristol council, the government and Arts Council have committed a total £25m so far – with new classrooms, state-of-the-art technology lab. The technology would include cutting edge instruments, such as those played by the flicker of an eye, or software that uses facial movements to control music.

Bristol Music Trust currently trains young disabled and special needs musicians, but the redevelopment would add new classrooms and a state-of-the-art technology lab will set new national accessibility standards. The venue, currently not accessible to disabled people, is due to close next summer for redevelopment; the plan is for it to reopen in 2019, fully accessible and home to the UK’s first specialist centre for the training of young disabled musicians.

Young pianist Ashleigh Turley at the launch of a campaign to create a new training centre for talented young musicians with disabilities

Young pianist Ashleigh Turley at the launch of a campaign to create a new training centre for talented young musicians with disabilities

The area is already home to the South-West Open Youth Orchestra which is the UK’s only disabled-led regional youth orchestra. The Paraorchestra also recently relocated to Bristol. The addition of a centre for advanced training at Colson Hall, supporters hope, would turn the region into a beacon for accessibility and equal opportunity.

* On the same topic of accessible arts, integration and young people, I recently came across an innovative music project that aims to raise awareness about visual impairment and sight loss. Musician Marie Naffah, a 23-year-old singer/songwriter, was inspired to explore blindness after her grandmother developed age-related macular degeneration. Marie wrote, recorded and performed a song while blindfolded and then collaborated with a group of six blind and visually impaired musicians to record the track, ‘Blindfold‘. Disability is not an obstacle to creativity or talent, as Marie says in a TEDx Talk at the Courtauld Institute that went live this week.

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Mental health beds shouldn’t be so hard to find

Mersey Care's Clock View development, which helps boost local mental health provision

Mersey Care’s Clock View development, which helps boost local mental health provision

About 500 mentally ill people travel more than 30 miles for an inpatient bed every month, such is the scarcity of local provision.

My piece in the Guardian today reflects longstanding concerns most recently outlined in a report from the independent commission into adult acute mental healthcare, supported by the Royal College of Psychiatrists and led by ex-NHS chief executive Nigel Crisp. The report demands include a deadline of October 2017 to stop the practice of sending severely ill patients miles from home.

Some areas are blazing a trail, however, when it comes to boosting local acute beds. Existing examples of good practice include Mersey Care NHS trust’s £25m purpose-built, short-stay mental health inpatient unit, Clock View. Then there’s Tile House supported living project in King’s Cross, London, which reduces hospital admissions for people with serious mental health conditions, aiming to move them into independent housing and work.

For more, read the piece the full Guardian piece here

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What an ex-gangster taught me about standing up to stigma

Reformed hardman Chris  (centre) with Lol and his partner Clair at the Ley centre

Reformed hardman Chris (centre) with Lol and his partner Clair at the Ley centre

What do a mental health nurse and an ex-gangster have in common?

That was the question I was asking myself as I visited the Ley Community, a residential drug and alcohol rehab centre, with Chris Lambrianou, former henchman to the Kray twins.

I visited the Ley at the invitation of Chris, who volunteers at the centre; his life now is about as far removed from his past as is possible. The Krays ruled London’s gangland in the 1960s and were imprisoned for murder. Chris was present on the night Jack ‘the hat’ Mcvittie was stabbed to death. His presence and silence that night in naming Reggie Kray as the murderer resulted in Chris being jailed for 15 years.

Whilst in prison Chris, now 78-years-old, reflected on his life and the mistakes he had made. He wondered how he had found himself to be in such a position. Like many other prisoners Chris ‘found’ God. But unlike many others who use this as a cynical ploy to seek freedom early, Chris knew his life had to change and was determined to make that happen. He wanted to make a difference to others. On his release in the early 1980s he began working at the Ley. His voluntary work there includes accompanying people to court and generally giving them the encouragement to try and turn their lives around.

I had read about Chris’s work in his autobiography, The Kray Madness, and contacted him to discuss our mutual interest in helping people to turn their lives around. After a few phone calls, he invited me to Oxfordshire to a look around the Ley. The centre initially struck me as quite regimented, but it has to be that way to encourage the residents to make the efforts to come off drugs and show self discipline and determination. There is a strong emphasis on group discussions, peer pressure and support, openness and self responsibility.

We have different backgrounds and seemingly different areas of interest – me with mental health campaigning and Chris supporting the rehabilitation of people with addiction issues. Yet we both have a desire to use our life experiences to make a positive difference for others.

Chris has an influential role among young men because of his Kray connections, with much recent interest in his life thanks to the Tom Hardy film Legend – Chris advised on the movie. Chris is not volunteering as much at the Ley due to his age, but when he does he accompanies people to court, and generally encourages them to try to transform their lifestyles and behaviours. They see him as a positive role model and he can relate to them.

Supportive networks are vital to recovery and a focus on relationships is the theme of Mental Health Awareness Week next week. Social contact is the best way of breaking down barriers, misunderstanding, and ignorance of mental illness. It is important for us to have good relationships for our own mental health in the sense of talking and listening to each other.

My own work, for example, has been aimed at encouraging men to seek help early for mental health issues and self-harm. My most recent media advisory role was advising the storyline involving the ‘macho’ character Zak Dingle in TVs Emmerdale during his depression storyline.

Tragically we have very high rates of self-harm among young men in my native north east. Much of this is a consequence of the damaging ‘Big boys don’t cry’ attitude among men, and the damaging misperception that men expressing their feelings is a sign of weakness. This is something Chris would relate to in his own work.

Challenging stigma and addressing feelings of shame is something Chris and I share as a common goal.

Through social media, Facebook, and social contact, we are both starting to chip away at the damaging defensive layering common to all tough guys. We are trying to convince men who think they are somehow immune from mental illness that nothing could be further from the truth.

We have discussed the idea of a joint project, perhaps a book, to try to reach out to men in particular who self harm and feel stigmatised because of having mental illness. Together we are determined to make a difference; we have more in common then we think.

* You can find Lol on Facebook

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The disability activist fighting injustice

Social policy professor Peter Beresford once described Doug Paulley, who I interviewed for today’s Guardian, as as a “caped care home crusader”.

Paulley is known for his wheelchair priority case against transport company FirstGroup, hinging on whether bus firms are required to force people with pushchairs to vacate wheelchair spaces.

His initial win was overturned on appeal and is due to be heard in the Supreme Court in June in a move that could, as campaign group Transport for All says, “set a legal precedent for enforceable priority over wheelchair space”. The Equality and Human Rights Commission (EHRC) supports Paulley’s case, and his awareness-raising helped win him the Sheila McKechnie Foundation award for campaigner of the year 2015.

Paulley has won almost all the 40 disability discrimination cases he has launched over the last decade. Paulley, who lives in a care home and uses a wheelchair, is an activist, not a lawyer. He has represented himself in all but three actions, challenging equality and accessibility barriers in organisations from pub chains to supermarkets and theatre firms. He has won around £10,000 in compensation over 10 years, he estimates, by bringing complaints under the Equality Act in the small claims court.

He welcomes last weeks damning Lords select committee report on the Equality Act 2010 and disability, which chastises the government for failing disabled people in its duty of care. Paulley was invited to give evidence to the select committee and is quoted in the report.

He answers critics who claim he’s motivated by money or that he enjoys being “a bully” – in fact he often donates damages to activist groups and stresses that the compensation amounts involved are “dwarfed by legal fees” – a reference to high-earning lawyers who represent service providers (the small claims court maximum award is £10,000 but discrimination-related claims generally fall between £600 and £6,000).

The full piece on Paulley, who volunteers at a local Oxfam and has fundraised for disability charity the Calvert Trust, is here.

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How cuts affect disabled people: “We’re going backwards – and fast”

Public artwork from DaDaFest in January (photo: DaDaFest)

Public artwork from DaDaFest in January (photo: DaDaFest)

Coverage of the budget has been dominated by a focus on George Osborne’s headline-grabbing sugar tax, although it’s not quite enough to detract from the unfair deal for the embattled social care sector (check Twitter for #carecrisis to get a flavour of the feeling). The chancellor’s other measures are regarded as the ‘last straw’ for disabled people, already being hit by cuts, and he is now under fire from rebellious backbenchers opposing the £4.4bn cuts to disability benefits.

As Ruth Gould, the artistic director of the UK’s biggest disability arts event, DaDaFest, pointed out in an interview I did with her for the Guardian, the latest cuts threaten to make disabled people “more invisible”. The work of disabled artists, as she says, is also at risk, thanks to sharp reductions in funding from local authorities and Arts Council England (Ace).

In 2001, Gould organised a one-off community arts event for Liverpool city council to mark International Disabled Peoples’ Day. As the head of the North West Disability Arts Forum (NWDAF), Gould, who is deaf, argued a single day was inadequate, and designed a groundbreaking week-long festival.

Fifteen years on, DaDaFest is the UK’s biggest disability arts event and Gould its artistic director. The NWDAF eventually adopted the name of the jewel in its crown (“DaDa” refers to the initial letters of each word in the phrase “disability and deaf arts”), so DaDaFest refers to both the festival and its parent charity. Each biennial extravaganza draws 10,000 visitors and participants. It has launched the careers of comedian Laurence Clark and actor Liz Carr, and helped Liverpool win European Capital of Culture 2008.

Last week, as something of a curtain raiser to 2016’s two-week festival in November, DaDaFest held a seminar on the barriers to disability arts for black and minority ethnic people (BME). The awareness raising event complemented DaDaFest’s play, Unsung, recently performed at the Everyman theatre, based on the life of 18th century blind Liverpool poet, abolitionist and disability rights pioneer Edward Rushton.

Gould commends the Arts Council’s Creative Case for Diversity, launched in 2014 to encourage more BME, deaf and disabled people into arts, but fears such efforts are a drop in the ocean. She explains: “We don’t have the disabled people who put people on the stage – the producers, the casting directors, curators, decision makers.” She adds of DaDaFest’s recent BME seminar: “We tried to attract those we see as gatekeepers…[to] look at the barriers and issues and use them to try and influence change by identifying benchmarks that we can reflect onto to see if change if happening.”

Recent figures show just 2% of the arts workforce is disabled, an increase of 0.2% on previous year. With 19% of the UK registered disabled and the employment rate among disabled people at 46% (around 30% lower than the rate among able bodied people), this highlights the poor representation of disabled people in the arts.

You can read the rest of the interview here.

DaDaFest 2016 takes place in November.

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Play puts life with a learning disability centre stage

Nathan Bessell rehearsing for Up Down Man at the Salisbury Playhouse. Pic: Laura Jane Dale

Nathan Bessell rehearsing for Up Down Man at the Salisbury Playhouse. Pic: Laura Jane Dale

“I always wanted it to be about dance, drama, feelings”, said actor Nathan Bessell recently of the new play he has inspired and collaborated on.

The 31-year-old stars in Up Down Man, at the Salisbury Playhouse until March 12. The play, as I explain in this piece on the Guardian’s social care network today, is about Matty, a young adult with Down’s syndrome. Bessell, who plays Matty, has influenced the script, which also draws on stories from families of people who have a learning disability.

Nathan Bessell and Heather Williams in Up Down Man. Pic: Richard Davenport

Nathan Bessell and Heather Williams in Up Down Man. Pic: Richard Davenport

To explore the issues raised, there will be three discussion forums for professionals in health or social care, theatre managers and families, with the first of these happening this weekend.

The show, by Bristol-based Myrtle Theatre Company, involves dialogue, original music and dance, and is a sequel to the company’s Up Down Boy, which I featured on the blog some time ago. The original play, also starting Bessell and written by his mother, Sue Shields, was performed in 2013 at the National Theatre and toured the country. The sequel, written by Brendan Murray, is not autobiographical, but follows the same character into adulthood and is presented from his perspective.

The two years of research and development involved in the new play currently running at the Salisbury Playhouse Murray involved the views and experiences of families and carers, with the process tailored to enable Bessell, who has limited vocabulary and a hearing impairment, to contribute.

Heather Williams, the artistic director of the Mytrle Theatre Company, has known Bessell since she began working with him when he was 16. Williams

Williams says her fellow actor’s influence has led to a more thoughtful, and gradual method of making theatre. However, as she stresses in today’s piece, the aim is also to produce a high quality piece of entertainment: “I hope people won’t think, ‘I’m going to see an issue-based play’, but come and see a damn good piece of theatre that changes the way they think.”

Nathan Bessell and Vic Llewellyn in rehearsals for Up Down Man. Pic: Laura Jane Dale

Nathan Bessell and Vic Llewellyn in rehearsals for Up Down Man. Pic: Laura Jane Dale

* Full story on the Guardian website

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Why the NHS needs more district nurses

The ageing population combined with the ongoing drive to keep people at home, not in hospital, reinforces the vital role of community nursing.

Yet as figures from the Royal College of Nursing show, the number of community nurses working in the NHS in England have almost halved in a decade; from 12,620 in 2003 to 6,656 in 2013.

As my piece on the Guardian website today explains, community nurses can be employed by NHS trusts, GPs, charities such as Dementia UK or private providers delivering NHS services. However, their numbers are falling. The decline might be attributed to primary care trusts transferring provision to other organisations under the government’s Transforming Community Services programme because those nurses moving to non-NHS providers are not captured in relevant workforce data.

The fall in numbers coincides with healthcare reforms that make their role even more important. “District nurses will be likely to play a significant role in the NHS reforms, particularly around new models of care that shift more care into the community,” according to Rachael Addicott, senior research fellow at health thinktank The King’s Fund.

Read the full piece here.

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Potential, not prejudice: photo project challenges disability stereotypes

Mark, on his wedding day

Mark, on his wedding day

When newlywed Tessa got back to the hotel with husband Mark after their wedding, she found he’d arranged a surprise – he had scattered flowers and balloons around the room.

As Tessa recalls in a new project and book, Great Interactions by photographer Polly Braden: “I kept laughing at Mark – he was trying to throw the flowers around me…He’s happy now he’s married. We love each other. Being married doesn’t feel any different. That’s it. It makes me feel happy. Mark’s already got his name, so his wife will be Tessa Jane Ahrens, that’s mine and Mark’s choice. I used to be Warhurst – not anymore now. When my bus pass has run out they’re going to change my name on it.”

Tessa and Mark on their wedding day, Tring Church, Hertfordshire

Tessa and Mark on their wedding day, Tring Church, Hertfordshire

The couple’s story is one of many documented in Braden’s book and exhibition. The project aims to capture the daily lives of people with learning disabilities, from everyday interactions to landmark events like Mark and Tessa’s wedding. The book will be published next month and the images will also be featured in an exhibition at the National Media Museum, Bradford.

Polly Braden spent two years working with social care charity MacIntyre and the people it supports across the UK. The resulting work, refreshingly, offers a glimpse of the diverse, individual, ordinary lives of people with learning disabilities – around 1.5m people in the UK have a learning disability, but the population, usually seen as a homogeneous mass or single statistic, is defined by needs and lack of ability, as opposed to current or future potential.

Braden’s project also comes at a time when public sector funding cuts threaten vital support services and, as I’ve written before, families fear that the long-promised improvements to the care of people with learning disabilities may never happen.

Caroline and David, Holmewood Community Centre

Caroline and David, Holmewood Community Centre

Braden’s work does not gloss over the problems, but offers a different perspective. She explains: “The people I have met all have stories about the barriers, prejudice and ignorance they and their loved ones have faced in simply trying to have fair opportunities in life. But their stories are also inspiring and filled with heart-warming moments which would have seemed impossible to imagine earlier in their lives – from being active and using public transport to graduating from high school and getting married.”

Aja with Farah, MacIntyre No Limits, Oxfordshire

Aja with Farah, at an Oxfordshire support scheme

Raymond and Peter, Christmas Party 2014, Civic Hall, Ellesmere Port, Cheshire

Raymond and Peter, Christmas Party 2014, Civic Hall, Ellesmere Port, Cheshire

The photographer’s aim was to try to take photos about support “at the best it can be, but not to gloss over the profound problems in the provision of care and support and the challenges around this as well”. The project tries to look at what can be achieved for people when they are given good support, “and to talk about what happens when they are not”.

The aim of the project is “to challenge out-dated, institutionalised images and improve public awareness by recognising and highlighting the every day interactions and life changing experience of people with a learning disability”. It also focuses on social care professionals’ attitudes towards and relationship with the people they support. As one support worker, Raul, told Braden of the person he works with: “Mikey needs this kind of support: he needs to be around people who know and understand him, who are willing to go a step further and discover the bright and amazing person he is.”

Becky, Stephanie and Lesley, dance and movement class, St Elphin’s community centre

Becky, Stephanie and Lesley, dance and movement class, St Elphin’s community centre

Sarah and Zoe, Great Holm Coffee Shop, Milton Keynes

Sarah and Zoe, Great Holm Coffee Shop, Milton Keynes

Lucie, Milton Keynes Sports Centre

Lucie, Milton Keynes Sports Centre

Charles with Callum, MacIntyre School, Wingrave, Buckinghamshire

Charles with Callum, MacIntyre School, Wingrave, Buckinghamshire

* All photographs by Polly Braden, the book Great Interactions is out in March and the six-week exhibition at the National Media Museum, Bradford, opens on 27 February.
* To mark the book’s launch, the National Media Museum and MacIntyre are asking people to share photos of “everyday moments that make life matter” on Instagram, using the hashtag #IamMe – see the website for more information
* For more reading, see this Guardian feature published at the weekend..

This blog was amended on Monday 29 February to include the Great Interactions Live website

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