Last Christmas was the first time in 14 years that Alex (not his real name) had spent the season with his family. It was the first time his parents had come to his house for Christmas dinner, the first time the 46-year-old had shopped for the meal, prepared it, laid the table and chosen the wine.
The event would have been inconceivable just a year before when, Alex, who has a severe learning disability, was living in a care home in Kent. He had already spent many years in a long-stay hospital ward. His challenging behaviour ranged from kicking to spitting and usually resulted in him being restrained by four members of staff, one pinning down each of his limbs, for up to 45 minutes.
Alex’s story, which outlines his path to appropriate social care, is among the powerful testimonies published in a report today by the Voluntary Organisations Disability Group (VODG). I was involved in producing the report for the VODG, which brings together more than 50 voluntary sector disability organisations, and I also manage the group’s blog.
Gavin Harding, who co-chairs the National Forum for People with Learning Disabilities and chairs self-help advocacy group Voices for People, writes in the foreword to the publication: “There is another way, which is presented in this report. It’s about putting people with learning disabilities and their families at the centre of planning and delivery of care.” Harding adds: “Care is about people, it’s not just a process.”
The VODG report outlines the key elements that can contribute to high quality, cost-effective care.
You can read more about the report via this blogpost.
William Wright left his Somerset school with a handful of GCSEs. Confused about what to do after school, he felt his teachers had “given up” on him. Wright found temporary work as a plasterer but lacked the qualifications for a permanent job. Unemployed and uncertain, he fell into a vicious circle; being jobless destroyed his confidence and made him feel depressed, which made it difficult to find work. Now 26, he says: “I felt like a failure. Unemployment knocked my self-esteem and made me feel like I wasn’t good enough at anything.”
One million 16- to 24-year-olds in the UK are not in education, employment or training, just as William was. Read more here in my piece from the Guardian on Saturday.
And in the same youth supplement this piece by Kate Murray, who also blogs on this site, explores how to restore young people’s faith and involvement in politics with comments from MPs – including children’s minister, Tim Loughton – youth workers and community activists.
Chances are you’ve never heard of the world’s most common inherited learning disability – it was news to me until my sister was diagnosed with it several years ago.
Today is Fragile X Awareness Day in 16 European countries including the UK. The syndrome affects least one in 4,000 girls or women and one in 6,000 boys or men, as my family discovered in 2003 when my sister was diagnosed at 14.
Late diagnosis of Fragile X, as in my sister’s case, is sadly all too common – but it’s still better than the condition remaining undiagnosed (again, common due to it being misdiagnosed as autism or misunderstood by many professionals).
Recognised just 30 years ago, it is diagnosed by a blood test revealing the abnormal “fragile” site on the X chromosome. Symptoms include social, language and emotional problems, mild to severe learning disabilities, and autism-like behaviour.
Professor Jeremy Turk, who advises the support charity the Fragile X Society on the psychiatric and psychological aspects of the syndrome, is calling for people diagnosed as autistic who also show signs of developmental delay to be tested for Fragile X. “The relatively low levels of diagnosis of Fragile X Syndrome is a matter of extreme concern as it prevents families from receiving the correct support, understanding their condition and restricts their ability to make informed decisions about their lives,” says Turk. “A lack of awareness of Fragile X Syndrome amongst health professionals, and society in general, contributes to this low level of diagnosis and the failure to understand the links with, and important differences from, autism.”
As with any complex need, the symptoms of Fragile X vary hugely, making a single template of care impossible (even if the current drive towards person-centred care would allow it) and “the system” a minefield for parents and families. With children, as we found in my sister’s case, the multi-agency support can include the health visitor, GP, paediatrician, school special educational needs coordinator, social worker, care manager, speech and language therapist, occupational therapist and physiotherapist. That’s if you’re lucky, have the time, energy and the wherewithal to negotiate the system.
And, as is par for the course in social care, just when you think you’ve secured the right tailor-made support, it’s dismantled and you have to start all over again once your child moves from children’s to adult services. All too often the “transition” – a catch-all term that makes it sound like an elegant, seamless move, oh the irony – to adult care is as relentlessly bumpy as that first roller coaster of diagnosis and the initial securing of provision.
I explained my family’s experience in a Guardian piece several years ago, from the furtive glances from strangers at her “inappropriate” behaviour to the fact that family excursions would involve packing a few small towels, just in case Raana got so stressed that she vomited. Since then have described my sister’s Raana’s path to the right care and support on this blog. We have been fortunate; our experience has always been more of a series of battles than full-blown crises, but I know others are not so lucky.
In 2006 Alison Davies jumped from the Humber Bridge with her 12-year-old son, Ryan, who had fragile X. She had complained that Ryan was not receiving his entitlement of respite care, although this was investigated and found not to be the case. The contrast between the chink of optimism my family and I had just started seeing in my sister’s case, with her tentative moves towards independence and finding her own voice, and the total, utter despair and isolation that Alison Davies must have felt was horribly stark.
After that incident on the Humber Bridge, Labour MP Betty Williams went on to table an early day motion in Parliament, criticising the insufficient support for families of children with Fragile X and autistic spectrum disorders that pushes many to “crisis point”. Just recently I read an extremely moving piece by a mother who admitted that “as a parent you feel guilty, and then you feel alone”.
Half a dozen years after Williams tabled her motion, I wonder how much has really changed for families affected by Fragile X, while remaining hopeful about the impact of today’s awareness day.
* read about Fragile X on twitter using the hashtag #fragilexday
The painting here, depicting the torment of a lost past and an unknown future, is among the intriguing works in a new exhibition opening in London today which focuses on mental health. The arts event by charity CoolTan Arts, an organistion run for and by people with experience of mental health issues that I’ve blogged about before, includes collage, painting, sculpture to batik and drawing.
William Ball, the artist behind the piece above, In a Room, says his use of black and yellow reflects concepts of death and danger. Another of Ball’s pieces, Through a Window, meanwhile, represents the optimism and growth he found at CoolTan; it is no coincidence that the artist also cares for the garden at the arts charity.
Ball has been a CoolTan regular since 2003 after a mental health crisis sparked by his mother’s death a few years previously, redundancy and relationship breakdown. “My future looked very bleak, at 51-years-old my life seemed as if it was over.” Almost sectioned and prescribed “heavy medication”, Ball was introduced to CoolTan Arts by a friend: “The people were warm and supportive. I soon visited regularly and enjoyed being part of it.”
The artist’s story is testament to the charity’s work which aims to change perceptions of mental ill health. The organisation, based in Southwark, south London, believes that mental wellbeing is enhanced by creativity.
Here are a few of the other pieces on show until November 30th at Carnegie Library in Herne Hill, south London.
Geometric Patterns, Marjorie McLeanView from the Southbank of Tower Bridge, Aaron PilgrimUntitled, Graham NewtonThrough a Window, William Ball
The free exhibition opens today at a Library, 188 Herne Hill Road, SE24 0AG, and runs until November 30. For information call 0207 701 2696 or email: suzie@cooltanarts.org.uk
When I asked my kids to tell me how they felt about visiting their grandma, who has dementia, in her care home, they were honest. “It can be a bit spooky because there are a lot of people there who can’t remember things,” said my eight-year-old. “It’s sad sometimes when we see her, especially when she says she thinks you’re her sister. I don’t really like hearing that. I remember when she was in her own house and she could make herself a cup of tea.”
Hard as it was to hear those words, I can’t say I find my daughter’s reaction surprising. I often find a visit to my mum “spooky” too. Although her care home is very good, it’s not somewhere I’d ever wanted her to be. It’s tough seeing her now, so different from the active person she once was, and the behaviour of people with dementia can be disconcerting and at times downright distressing. I initially found the resident who repeatedly cries out: “I feel terrible” very upsetting – and I’m supposed to be the adult.
The children and I have talked about how my mother used to be, why she gets confused now and why it’s so important that we spend the time that we do with her. My five-year-old summed it up well: “If we didn’t go, she’d be upset and she’s your mum.” But although we have often talked about dementia, and how it makes them feel, I’ve sometimes felt I was struggling to explain what was going on.
That’s why I was so impressed to find The Milk’s In The Oven, a booklet published by the Mental Health Foundation, to help children understand a bit more about dementia. Simply written, with practical exercises to encourage children to think about what it might be like to lose their memory, it’s an effective tool both for the classroom and for families affected by dementia.
Toby Williamson, head of development and later life at the Mental Health Foundation, explains that the booklet, originally published more than a decade ago but updated this autumn, is designed to help address some of the stigma surrounding dementia. “What we are trying to do is help young people understand what dementia is and how it affects the person,” he says. “It addresses the fears children might experience and the feelings they might have of being embarrassed or angry. What it is saying is actually you might well have those feelings, it’s understandable and you can talk about it. We want to reduce the fear of going to visit people with dementia. Social relationships are incredibly important for people with dementia – even in the final stages, a bit of contact, just holding hands, can mean so much.”
As Williamson points out, most families in the UK will, at some stage, have a relative or friend with dementia. It’s important, he stresses, that people know more about the disease, both so that they can support the person affected and so that they can encourage relatives to get an early diagnosis, often so valuable in terms of treatment and preparing for what’s ahead. And even for those children who don’t know anyone with dementia, there’s huge value in learning more about it.
Schools are increasingly teaming up with health professionals to build the links which can foster greater understanding. One impressive project is in Doncaster, where pupils from three schools now visit day centres across the town, taking part in activities like baking, sewing, singing and playing dominoes with people with dementia.
Mary Beardsley, the team manager for the local NHS trust’s Doncaster Community Memory Therapy Service says, the youngsters involved, who are aged between nine and 11, usually don’t have any personal experience of dementia. But thanks to the project they have built strong relationships with the service users, gaining a real respect for them as individuals. For the older people too, it’s been an overwhelmingly positive experience.
“Our patients gain so much confidence – it puts them in a position of power being able to teach the children something,” says Beardsley. “When you get dementia, you lose your confidence and you don’t think you are good enough. Seeing the interaction between children and patients is fantastic. The children grow to love them and the patients can’t wait for them to come.”
That recipe for a better understanding of dementia through building new relationships is one I can see developing in my own children. As they talk with some of the residents at my mum’s home, I hope they are seeing that older people with dementia need our support and respect. It’s a lesson that, as the numbers with dementia rise, more of the younger generation will need to learn.
This evening the charity YoungMinds hosts its annual debate in London on the controversial topic of whether our target driven schools system is damaging children’s wellbeing. The charity aims to improve the mental health and emotional well-being of children and young people.
The discussion will be chaired by the BBC’s Home Editor, Mark Easton with panellists including Fiona Millar, journalist and education campaigner, Matthew Taylor, chief executive of the Royal Society of Arts, Karen Robinson, head of education and equality at the National Union of Teachers, Ian Morris, Head of Wellbeing at Wellington College and Adele Eastman, senior policy specialist at the Centre for Social Justice.
After what promises to be a controversial debate, the event will conclude with a short film made by young people who are part of the Very Important Kids (VIK) participation group – of which I am a member – on this subject and the stigma faced by young people with mental health difficulties.
A still from tonight's VIK film about schooling and mental health. Pic: VIK
The film to be shown tells the story of a schoolgirl called Jessie who, though having no diagnosed mental illness is experiencing a great deal of emotional distress and finding it increasingly difficult to cope with the amount of stress she is under, especially with exams looming and pressure from school and family to perform well. Every year around exam time we hear of the stress young people are being placed under to achieve top grades, sometimes to the detriment of their mental health. Our film hopes to shine a light on this issue, promote debate and emphasise the importance of good emotional wellbeing to prevent future mental health difficulties.
A film made by youth mental health campaigners considers if targets damage pupil's wellbeing?Pic: VIK
Acted, directed and produced by members of the VIK group we aim to produce a trilogy of films centred on the theme of young people’s mental health, ranging from emotional problems to more severe forms of mental illness. The message we endeavour to get across is that every one of us is susceptible to mental health difficulties; we all exist on a continuum from happiness, to sadness, to an inability to cope and then mental illness.
Mental health is not simply an affliction of the few but something one in four of us can expect to experience in our lifetime. Because of this understanding how to take care of your emotional wellbeing and building resilience from a young age is vital and another theme which will be interweaved through the trilogy.
Having mental health difficulties from a young age can bring with it its own stigma. Young people can feel stigmatised against in society anyway, for a whole host of reasons and when you add on to that the stigma of having a mental health problem it can be really difficult to trust anyone enough to talk to them about what you are experiencing, or even find someone willing to listen and empathise.
All the young people involved in making this film have experience of mental health difficulties and the desire to challenge old ideas about mental health is something we feel passionately about. Demystifying what it’s like to be a young person with mental health difficulties can go a long way to tackling stigma and educating future generations that mental health isn’t just about mental illness and definitely not something to be afraid of.
* This evening we will also celebrate the launch of a new project, YoungMinds in Schools, to improve the emotional wellbeing of children and young people in school. The programme aims to improve outcomes for children and young people with behavioural, emotional and social difficulties by bringing together professionals, parents, children and young people to create a comprehensive suite of learning resources.
The project seeks to maximise the potential to positively influence the emotional wellbeing and mental health of the whole school community, adults and children, as well as addressing the specific needs of pupils identified as having behavioural, emotional and social difficulties (BESDs).
The programme will work collaboratively with clusters of primary and secondary schools and the services that link to those schools, providing training and consultancy support to schools and gathering the views of professionals, parents and pupils to shape innovative resources. YoungMinds has received two years funding from the Department for Education (DfE) through its Special Educational Needs and Disability (SEND) programme for the YoungMinds in Schools project.
This film should stop you in your tracks. Its power to move puts it almost on a par, as Channel Four’s Jon Snow said at its launch today, with the seminal Cathy Come Home.
The short film by the charity the Private Equity Foundation (PEF) features 11-year-old Luke, one of the 1.6m children living in poverty today. As Luke explains his hopes for the future (or rather, his lack of hope) the film also focuses on the issue of NEETs (young people not in education, employment or training).
The film is part of the Luke’s World campaign to draw attention to the lack of opportunity facing children and young people and explain how their lives can be improved by creating better links between education and employment. As PEF chief executive Shaks Ghosh writes over on the campaign blog, Luke lets us briefly into his world and “gives us a glimpse of a national scandal: what life is like for the 1.6 million children still growing up in poverty in the UK today.”
He may only be 11, but already he knows that his dream to become a vet might never be fulfilled. The poverty he suffers, as Ghosh stresses, isn’t simply “the damp and peeling paint, the depressing tower blocks, the absent father, the 16-year-old sister who has left school to look after her baby and the mother who hasn’t worked for four years”. No, what Luke lacks is life chances and consistent support which will help him stay on the path from school into work.
The PEF has launched ThinkForward, a scheme to plug the gap between school and work. The aim is to support young people hand from 14 to 19, allocate them a personal ‘coach’ to support them with an action plan that encourages them to access local projects and work opportunities.
The launch of the campaign featuring Luke coincides with a report published today by The Work Foundation and the PEF that has uncovered 10 blackspots for youth disengagement – cities where between one in five and one in four young people are not in education, employment or training. The recession exacerbated this problem, with the largest increases in neet rates in those cities which already had high levels. Read more about it here.
As Ghosh has argued on this blog before, early intervention is vital unless today’s Lukes become tomorrow’s neets.
Back to school after the half term break today and while some children will have enjoyed days out or trips away, two million live in families that can’t afford a day trip to the seaside, never mind a holiday.
Today is also the day that an All Party Parliamentary Group on social tourism is due to publish its findings. Its remit over the last few months has been “to investigate and promote the social and economic benefits of social tourism”, social tourism generally meaning that families on low incomes are helped to afford a break. Family breaks, say supporters of social tourism, can lead to children being more engaged at school, boost social integration, help with health issues and encourage economic growth in under-used resorts or regions which suffer from the ebb and flow of seasonal tourism.
But while not being able to take holidays has been used as a poverty indicator by the government since 2003, it’s easy to see why social tourism is a contentious issue. After all, why should you have a holiday if you don’t have a job to take a break from? Why should the taxpayer fund your vacation if you don’t earn enough to pay for your own?
The debate also touches on issues such as allowing children out of school during term time (to take advantage of off-peak breaks) as well as notions of charity handouts to jobless families and their “naughty children”. As one teacher commented in a Guardian piece earlier this year on charity holidays “There was resentment from some of the families not chosen…We were accused of ‘taking the naughty children’. We didn’t, but perhaps it was understandable that they thought so.”
The Family Holiday Association, the charity where that two million statistic I quoted above came from, helps low income families have time away. The organisation takes referrals from welfare agencies like social services and children’s charities, helping those with a yearly household income of below £26,000 access holidays and who have not had a break for four years.
While social tourism in the UK is somewhat ad-hoc – the Family Holiday Association relies on voluntary donations to fund families in need of a break and invidivual social services departments might have case-by-case funding for respite breaks – the rest of Europe has state-aided social tourism.
French “holiday cheques”, for example, can be used for accommodation, food, transport, leisure and culture. Employees get help to make regular savings, supplemented by employers and social organisations which get reduced taxes in return. The employee redeems the total value of the savings and supplementary contributions in the form of holiday cheques. In Spain, a state and benificiary-funded holiday programme funds breaks for older people which also tackle seasonality in the tourism sector. It gives older people the chance for holidays in off-peak areas with a warm climate.
Lynn Minnaert, lecturer in tourism at Surrey University who runs a programme for the Economic and Social Research Council on social tourism, has contributed to the APPAG report. She argues that while the policy concept is on the UK’s political agenda as a talking point, there is little clear action on social tourism.
Minnaert’s Europe-wide research includes schemes where people have improved their family relationships and been helped into employment or boosted their mental health (this, although published a while ago, is an interesting article by Clare Allen on why people with mental health problems rarely take holidays). Minnaert argues the time is right for the UK to embrace the concept of social tourism but acknowledges that “the misconception that the government will pay people to go on holidays” makes proper debate difficult.
But Minnaert adds that social tourism isn’t simply about “state-funded holidays”; the state could provide a service to put people in touch with holiday and leisure venues that stand empty, from barely occupied seaside B&Bs to underused cafes and restaurants. Resorts with low occupancy could specialize on a more organised basis in holidays for those coming out of hospital, she adds (after all, the health benefits of seawater is what made resorts like Brighton became fashionable in the late 18th century) and be involved in more respite care projects for families with disabled children.
Minnaert says she hopes the APPG report due today will show social tourism is cost-effective and encourage a new social policy to the UK, getting past the “government paying for unemployed to go on holiday” school of thought to a more grown-up debate on the issue.
In terms of practical action, next steps include a forum or network between tourism sector and policy – “on both sides there is willingness to look into this, but no vehicle” – and mapping of under-used holiday provision. Minneart also suggests new joint procurement for people who cannot travel independently or who have not travelled before, transport providers could get involved.
The Family Holiday Association has complied comments from those they have helped, among them a family where the youngest child needed regular hospital treatment and where the father was unemployed and had cancer. The family had a seaside break in Skegness, and although a world away from the hot, faraway destinations most people refer to when they say they “need a holiday”, the long-term impact of the break was priceless. As the family’s support worker said: “I could see that the three week build up to the holiday was as important as the holiday itself. And for the next six months the family lived off the break.”
Tom Hodson at the Ancient Technology Centre, Dorset. He has just won a BTCV Green Hero award. Credit: Professional ImagesTom Hodson used to live on the streets, his was a peripatetic lifestyle that did little to help him overcome his depression and manic episodes. Diagnosed bipolar, even when he got a roof over his head, he often went for a week without proper sleep.
Today he is honoured as a Green Hero in an annual awards scheme, having made a difference to the local environment through volunteering and transforming his life in the process. The 21-year-old from Salisbury has has won in the natual health category in the awards run by practical conservation charity British Trust for Conservation Volunteers (BTCV), recognising how he’s changed his own life and inspired others. The Green Hero awards show the positive impact of those who give their time for community-based conservation projects.
Environmental charity BTCV volunteer Tom Hodson a "green hero". Credit: Professional Images
Tom’s hands-on, practical work with the charity has had, he says, huge benefits on his sleep issues. Without his role, he adds “I’d be doing nothing..going nowhere with my life.”
The scheme has given him “direction and purpose” and has boosted his mental health. As well as becoming more confident, he has learned time keeping, healthy eating and how to use a computer. He leads groups of volunteers and is looking forward to coming off benefits and into paid work.
Environmental award-winner Tom Hodson at the Ancient Technology Centre, Dorset. Credit: Professional Images
Tom’s fellow Green Heroes include Michael Rogerson, 20, who won the volunteer of the year award. Michael, who has been deaf since birth, joined BTCV after 15 months without work, he was depressed and had very low self esteem. He has now got his dream job as a gardener and is learning to speak after having a cochlear implant and one day hopes to set up a dry stone walling business.
And the benefit of supporting and including a diverse volunteer workforce is not simply on the inviduvual themselves; having such a diverse team of volunteers improves social inclusion and breaks stigmas.
There are of course specific schemes that offer people with disabilities or those with mental health problems the opportunity to donate their time to the community with support. Schemes like the Respect Us project, run by charity Community Service Volunteers (CSV) that help young learning disabled people to volunteer as they move from school to becoming a young adult.
It might seem like the current financial climate is the worst time to invest in extra support for volunteers who might be vulnerable in some way, but supported volunteering, pays dividends. Check here for great little film showing how Jenny, with Asperger’s found new confidence and skills and boosted intergenerational contact between local youth and older people through supported volunteering).
At BTCV, volunteer officers are aware of the impact of “green heros” likes Michael and Tom. Senior project officer Rachel Miller, who nominated Michael says: “His can-do attitude, where there are no barriers, has been an example to us all.” Tara Hares, volunteer officer who works with Tom, adds: “He turns up raring to go, he doesn’t allow his issues to affect the work he is doing..I feel proud working with Tom, knowing what he has been through and he is still funny, and brilliant at what he does. I’m pleased and proud to work with him.”
Watch this quite lovely film, introduced by Sir David Attenborough, which features both Tom and Michael and other inspiring volunteers:
http://youtu.be/GSCattrH3bA
* On a related note, the Hardest Hit campaign run jointly by the Disability Benefits Consortium and the UK Disabled People’s Council has organised several events tomorrow, Saturday 22nd, in protest about the impact of cuts on society’s most vulnerable – a community that includes people whose needs echo those of Tom and Michael, above. More information on what’s happening tomorrow is here.
We need more of this: young audiences enjoy accessible and inclusive performance at London's Unicorn Theatre. Pic: Alastair Muir
Anger, frustration, embarrassment, guilt and despair. Depending on what unfolds on the stage, the range of emotions you experience at the theatre can be extraordinary. But what if those emotions are triggered not by the actors, but by a fellow audience member, or a member of the theatre’s staff?
This can be the fate awaiting theatre-goers with a learning disability or those who have the temerity to attend a show with someone who happens to have a learning disability, as the father of autistic 12-year-old Gregor Morris found to his disgust earlier this year.
I had an unpleasant experience when I took my sister to a West End musical, although our shoddy treatment was at the hands of small-minded fellow punters, not any members of staff.
Something similar happened when four-year-old James Geater from West Sussex went to the Theatre Royal Drury Lane in London in August. As James’ mother Karen said at the time, James is part of society and children and adults are losing out through no fault of their own – and Gregor’s and James’ stories are only those that have been reported.
As for the family of Gregor Morris, they took their campaign to the internet, and now they have more than 4,100 supporters on Facebook. Earlier this week, their awareness-raising drive, backed by the National Autistic Society, culminated in a major event at London’s Unicorn Theatre. The day-long forum, Autism and Theatre: An Industry Inspiration Day, brought together theatre staff and autism experts.
It was apt that the Unicorn hosted the day; it specialises in theatre for children and young people and has long been an inclusive and accessible arts venue with autism friendly performances.
Suspended from a hanging chair with an arial performer at Unicorn's recent Something in the Air show. Pic: Alastair Muir
The hope, say organisers is that the event will create “long-lasting cultural change” and help spread the word about existing access work in the theatre industry. They hope to spark similar awareness days regionally and lead to better interaction between local venues and families affected by autism.
I wasn’t at the event but apparently around 200 theatre industry types attended to learn more about autism, hear from the families affected by access and inclusion issues and discuss best practice. Actor Jane Asher, president of the National Autistic Society spoke about the fact that simple adjustments in theatres could boost access while training staff can also make a huge difference.
There are, of course, various initiatives to make the arts more accessible, the Autism Friendly Films project is just one. The Unicorn Theatre has pioneered sign-interpreted and autism-friendly screenings and performances.
Awestruck and at ease, watching at the Unicorn Theatre. Pic: Alastair Muir
Unicorn staff get autism awareness training and performances feature smaller audience sizes and a chill-out room with activities for anyone who needs some time out. A “familiarisation visit” is available the night before a show, to reduce anxiety and stress for first-time theatre-goers (this, I think, is utter genuis – and so simple and inexpensive for other venues to adopt) and the theatre has a dedicated access manager. This weekend sees the latest access-friendly show, Billy the Kid and the venue is also hosting the Art for Autism exhibition that I’ve blogged about before.
While the mind boggles as to why this kind of large-scale theatre industry event hasn’t happened before and why it took pressure from a parent campaigner to mount, it’s better late than never. The great practice and partnership that exists needs to be widely shared, so the work of the most accessible and inclusive venues trickles down regionally and locally, reaching beyond the big towns and cities that boast the biggest venues.
If the theatre sector debate translates into visible action, people with learning disabilities and their families can see shows they love without paying through the nose for a half empty box, going out of their way to attend midweek matinees which tend to be less busy and therefore often less stressful or – worst of all – having to leave before the end, either by request or because they feel unwelcome.
And more accessibility combined with a welcoming and understanding attitude should make commerical sense in theatreland. The economy might be suffering but the Society of London theatre estimates that box office takings totalled half a billion pounds last year, so there’s a bums on seats reason to attract more and younger theatre-goers into the auditorium (staff just have to be prepared for the bums to defy convention and to wriggle on and off seats during the performance).
I’m eager to see how this week’s event is followed up although I wonder if the organisers missed a trick when they tagged the day only on autism. While those with autistic spectrum conditions can require very specialised care and a unique, tailor-made approach, I’d hope that theatres can appreciate the needs of all of those with special needs, many of whom don’t necessarily have a label for what makes them different.
It’s a niggling point however, and if the event fires debate and pushes theatreland to develop a more consistent approach to its treatment of all audience members, then what matter? It’s worth noting that event co-chairman Jonathan Meth, a theatre consultant, arts tutor at Goldsmiths, University of London, and parent trustee at Ambitious About Autism, acknowledged the need to broaden the debate’s remit, saying after the event: “While the day was focussed on those with autistic spectrum conditions, we hope it was both an inspiring and practical day for all those who want to make the experience of different people coming into their theatres an excellent one.”
The other side of the theatre access and inclusion coin involves seeing more actors of all abilities onto the stage. A combination of user-friendly theatres and more integrated performances would support the kind of cultural shift discussed at the Unicorn earlier this week. How can people who behave, sound or move differently or don’t look quite like “us” be fully welcome in an audience that has never had the chance to see them perform?
I’ve blogged before about the great work of Heart n Soul, for example. On a more general disability arts tip, I’ve also just been reading about the work of another group, Accentuate, supporting projects encompassing the arts, culture and sport to change the way disabled people are viewed, the project is hooked on the Paralympic Games.
When I heard about the Autism and Theatre event, I was reminded of the innovative work of Speakeasy Theatre Company, which aims to integrate actors and audiences of all abilities. The simple words of artistic director Andy Reeves on a recent piece of work could be a motto for the companies that run theatres: “Our goal is for everyone – disabled, non-disabled, young, old – to come out with a smile on the outside and a warm feeling inside.”
A well-known playwright once compared life to a play. If all the world was a stage, movement between the two might be more fluid, giving us a better chance of reflecting society’s many facets on the stage and in the auditorium.
* The Facebook campaign and debate sparked by Gregor’s experience is at www.facebook.com/groups/greenwicked
