Gold Run, an opera at Glyndebourne (pic: David Illman)
“People say to me how great it is that I ‘help’ people with learning disabilities to make their own films but I don’t do this out of charity. Far from it. I do what I do because I am excited by the amazing talents of the people I work with. Filmmakers with learning disabilities have an ability to offer a view of the world that I don’t. I couldn’t even dream of the scripts that our members write.” So says Will Sadler from Beacon Hill Arts in Newcastle, reflecting just one view about “learning disability arts”.
It’s the same sentiment expressed by Richard Phoenix, who runs music organisation Constant Flux, and who I’ve quoted elsewhere on this site : “Often when I talk to people about working with people with learning disabilities in music I encounter the “Aww…. That’s so nice” attitude, which isn’t intrinsically wrong in any way but it seems to me to represent a feeling that people with learning disabilities are only capable of emotionally neutered art, of things that are ‘nice’ and ‘happy’ which from my experience is completely off the mark.”
So what does that phrase “learning disability arts” mean to the public? What constitutes “good art” is a notoriously subjective and personal view, but what is the quality of work being produced by people with learning disabilities? How is such art produced, judged, presented or received differently to “mainstream” art? How far do non-learning disabled artists who collaborate with people who have a learning disability lead the project – and what standard of art is produced?
The Brighton-based project, Creative Minds, is hoping to lead a much-needed national debate about these kinds of issues. Funded by the Arts Council, Brighton and Hove city council and the John Ellerman and Paul Hamlyn foundations, Creative Minds is run by a committee of learning disabled artists who want to “challenge perceptions of their work being labeled as ‘good therapy’ and have a national discussion about its quality and how that can be defined”.
Horse, watercolour by Carol Chilcott
Leading arts charity Carousel is facilitating the project with some good food for thought already given a platform via the Creative Minds website and the first in a series of conferences will be held in Brighton a week today, on Monday 10 March.
The aim is for learning disabled artists to showcase their work and lead discussions about it. The conferences are targeted at their peers, arts organisations, critics, funders, venue programmers and anyone interested in learning disability led arts
Performances, art and discussion includes Action Space London, Chris Pavia and Stop Gap Dance Company, Corali Dance Company, Face Front Theatre Company, Oska Bright Film Festival and Rocket Artists.
Laundry Boy, Face Front Theatre
The Creative Minds steering committee explains that “as individual artists and performers we have had our work not taken seriously when we have shown it in theatres, galleries and on stage”. The group’s aim is “to change peoples ideas and perceptions and the way they see us”.
Hopefully the project and conferences will lead to a high profile debate that reaches beyond the learning disability arts sector.
As performer Bethan Kendrick writes on the Creative Minds site, “Having a learning disability informs your art and helps you produce work of a high quality. I have found that my confidence has grown because I perform my work to audiences. Thinking about quality will help you develop your skills, especially as you work with your company and your director. I take my performance work very seriously. This gives me great confidence in my art.”
• The Creative Minds conference is on Monday 10 March, 10am to 5pm at the Brighton Dome, Church St, Brighton (the venue is wheel chair accessible)
• Constant Flux presents the Fish Police on tour from next month, see website
How blurred are the lines between work and leisure, thanks to the impact of technology on our working lives? Does anyone still really work only an eight hour day? And what about the rising numbers of self-employed people in our changing economy?
These are among the questions prompted by a new exhibition about the world of work, Time & Motion: Redefining working life, from FACT (Foundation for Art and Creative Technology) and the Royal College of Art’s Creative Exchange Hub.
The show uses art and archive materials to look at everything from clocking on at the factory gates to remote, online ways of working.
Among the varied works is a piece from Cohen van Balen about mass-manufacturing, 75 Watt. The video commission focuses on a product with no useful purpose (apart from to choreograph a dance performed by the labourers making it). 75 Watt, from Time & Motion
Another piece, Electroboutique’s iPaw, shows a dog who passively scrolls through apps on his tablet, reflecting how technology might trap its users. Electroboutique’s iPaw, from Time & Motion
Irony dictates that I can’t get to the exhibition due to work deadlines, but, fittingly, I’ve checked out the exhibition online. It’s worth a look.
* Time & Motion: Redefining Working Life is at FACT in Liverpool until 9 March.
I recall listening to Radio 4’s The Archers as a teenager on long hot summer afternoons; the “heatwave” summer of 1976 springs to mind. As with listening to cricket, the radio soap helped me to relax and I warmed to its quaint and easy listening style. I would not have envisaged all these years later that I would be involved with the programme – and with such a controversial storyline.
I’ve been advising The Archers on the storyline about the depression experienced by the character Darrell Makepeace. The Archers is moving with the times. It remains a quintessentially English portrayal of village life, but also has to echo the modern age and remain current. Just yesterday, new figures were published on use of the Mental Health Act in England, showing that the number of detentions, which has increased by 12 per cent in the last five years, exceeded 50,000 in 2012/13.
Controversial, contemporary plotlines will appeal to the listeners, but Radio 4 must get the balance right by keeping its traditional support base whilst acquiring a younger audience. The Archers is the world’s longest running radio soap opera and the station’s most popular non-news show with more than 5 million listeners.
With this in mind, I began offering advice on the character Darrell and his spiralling fall into depression about three months ago. As part of the Time To Change media advisory service, my role was to try to add as much realism and sensitivity to his presentation. This differed so much from my previous advisory role for the character Zak Dingle in the soap Emmerdale. Why is this so?
Well, Darrell is a character who has hit rock bottom and, in doing this, has not only caused much pain to himself but also to those around him. Chaotic and unpredictable would be just two words to describe this. He is also very manipulative. The Archers’ listeners appear divided in their opinions about this. I remain very enthused that we have highlighted the devastation of depression, its indiscriminate nature, and the “loose cannon” impact.
Emmerdale’s Zak endeared himself to the viewers as he was deemed a “loveable rogue” The fans empathised with his plight. But Darrell is not so endearing and his manipulative behaviour has only served to isolate him from most fans.
Therein lies the challenge for me, and the producers themselves – to promote more understanding and acceptance of mental illhealth, and its indiscriminate nature. I received praise and criticism – in equal measure – from listeners, and that’s fine. I no longer lose sleep at night worrying about criticism; it opens up a debate and encourages more dialogue around mental health that so far there is a reluctance to do.
This work is challenging because, by my very nature, I am a sensitive person. I have had to grow a thicker skin since to take the blows but the praising comments helps to ease the pain. The criticism at times to my role and advice taken has been quite personal, but I can only give advice from my own perspective.
I have a passion to promote more understanding of mental health and eradicate stigma from society. I hope The Archers’ storyline will help transform people’s attitudes to mental health.
* The first national Time to Talk Day takes place on 6 February, aiming to spark a million conversations about mental health. Part of Time to Change, it highlights how little things – sending a text, a chat over a cup of tea- can make a big difference to someone with mental health problems.
Ashwani and Didi laughing, from Love, Loss and Laughter by Cathy Greenblat
I was entranced by some of Cathy Greenblat’s photographs of people with Alzheimer’s, which I came across when researching a recent piece about dementia.
Dementia is a major global challenge – health experts describe it as the next global pandemic. One in three of us will develop it – 135 million people by 2050, according to Alzheimer’s Disease International (ADI), and its annual worldwide health and social-care cost is around £400bn.
Yet Greenblat’s work goes behind the headlines to present the human aspect of the disease.
The images in the book Love, Loss and Laughter present a rare view of the illness, shattering the stereotypical image of people as personality-free empty shells, discarded and forgotten by society.
Marie-Therese at a party (photo: Cathy Greenblat)
Greenblat’s thought-provoking project to document the lives of people with Alzheimer’s is endorsed by ADI and has taken her all over the world for over a decade (it was published in 2011).
An academic and photographer whose grandparents and mother all developed Alzheimer’s, the sociologist’s work combines a large scale vision and research expertise with a very personal focus on human relationships and societal attitudes. Many of her photographs reveal the characters behind the disease, presenting people with Alzheimer’s in a social or familial context and among friends and carers.
The hundred or so photographs taken in care homes, private houses, clinics and day centres all over the world show how it is possible for people with dementia and their families and carers to experience some joy as they lose their cognitive functions (the “love” and “laughter” in the “loss”). The images show how people can maintain both independence and quality of life.
It is worth pointing out, however, the images do not shirk from touching on the frustration, anxiety and isolation – particularly at the end of life – which Alzheimer’s brings.
As Greenblat, Professor Emerita of Sociology at Rutgers University, writes in the book, “people with dementia retain vital capacities”. She reinforces the notion that our attitudes to dementia must change if the experience of those with the illness is to improve; her book quotes Michael Verde, president of American dementia organisation Memory Bridge, who says People with dementia don’t disappear unless we disappear from them”. It is possible, as Verde has said, “to change what is referred to as ‘the long goodbye’ into ‘a long hello’”.
The photographer tells me that people are often surprised to hear that the subjects of her pictures have the disease, she says: “I’m often struck by the responses of viewers of my photos at exhibits who ask with some astonishment, ‘But does this person really have Alzheimer’s?” They have only seen images that show people who are sad, dispirited, disconnected, and it takes them time to accept that that is not the necessary condition.
“People who are treated as hopeless lose hope; people who are treated as being unable to do things lose confidence. We don’t treat a sense of hopelessness or lack of confidence with medication: we do it by helping them to feel needed, cared about, being stimulated, communicating differently with them.”
Greenblat will be in Australia in late February to photograph more care settings and explore how to create “joy filled residential communities for people with dementia”. She hope this will result in a multimedia project with interviews, photographs and videos. Some more of her work is included in the gallery below:
“Laughter from the heart”
“Renu (left) and her cousin, Mrs Kumar, India “
“Liliane with a photo of her grandson, France”
“Elsie (left) at a Laughter Yoga session with Jody, USA
“Woman drumming at Uchida music therapy session, Japan”
“Big hug, Japan”
“Anna (left) with her daughter Louanna and Dr Peter Whitehouse, Canada”
“Home visit to the woman in the turquoise room, India”
Andy celebrates his 70th birthday, Canada
Marie-Therese at a Christmas party
• I asked Cathy a few more questions about her work, here’s what she said:
“Perceptions of Alzheimer’s are changing in the time since I’ve been photographing.One of the big changes is that there is so much more talk about Alzheimer’s, in the press, in books of all sorts, on the internet in the form of webinars and connections that are global.
Of importance is the greater participation in the dialogue by people living with dementia – people with diagnoses and people who are their care partners. This is no longer just the medical community telling us about what they know, but sharing of experience…Not everyone is listening to these new voices, but those who do have learned that there are ways to continue a quality life for much longer than has generally been believed.
How has my academic background helped me in my work? Probably the most important thing is that I came to this work with a knowledge of doing research… I knew how to go into new situations and places and learn from people about their lives. Now I was adding a camera to my “tool kit”, as I believe that seeing is so important in changing one’s mind… I speak in an early chapter in the book about ‘Changing people’s minds about people’s changing brains’ – that’s what I have been doing. And I think that is crucial.
I thoroughly believe that we need to distinguish between the physiological changes as we become ill, and the primary symptoms brought about by that. But there are many secondary symptoms such as apathy, aggression, social isolation, that are not caused by the disease but by the way people are treated and come to see themselves .
People who are treated as hopeless lose hope; people who are treated as being unable to do things lose confidence. We don’t treat a sense of hopelessness or lack of confidence with medication: we do it by helping them to feel needed, cared about, being stimulated, communicating differently with them… It is what the photos illustrate. This is not a new perspective… it has been discussed by scholars around the world, but the addition of visual evidence in photos that clearly are not posed has given them wider acceptance.
Many people “run away” from dementia. Surely some people run away from family members or friends who begin acting strangely and are difficult to deal with because they are don’t want to deal with the problem. We all know of siblings who fight about the care to be given to a parent, leaving the responsibility on someone else’s shoulders. They say they are too busy, they had poorer relations before, they have other responsibilities..
But many people are not selfish and ill informed – rather, they are frightened, they don’t know what to do they don’t know what they can do, they believe that there is nothing that can be done until a cure is found. That is simply not true. There is so much we know how to do now to engage people in continuing stimulating activities. There is so much to be gained through creating partnerships with professionals and other groups that provide day care activities, memory centers, art and music therapy, etc.
We need to help people know that there is a great deal to do and inspire them to find resources near their homes or on the internet. Many friends and family want to be engaged and helpful but they don’t know how to do that. There are excellent books, pamphlets from the Alzheimer’s associations and other groups. This can not only help the person who is ill, but it makes the friends and family feel more empowered… They can learn what to say and how to act in ways that let the person feel they are understood, which in turn reduces the aggression which so often is the result of feeling they can’t clearly express their needs and desires.”
• You can watch some films on Love, Loss and Laughter here and here or visit the website to find out more about upcoming events related to the book and photography project. You can also follow Cathy on Twitter @CathyGreenblat
A groundbreaking support scheme run by care leavers for care leavers is hoping to help vulnerable young people for a second year Christmas running.
Named in memory of a 23-year-old care-leaver, Topé, who took his life several years ago, the Tope Project helps care leavers and held its first festive event last year, allowing those who live alone to enjoy Christmas Day in a safe environment (the pictures here are from last year’s event).
Youth worker, Shalyce Lawrence, 24, who was in care for 10 years and considered Topé “like a brother”, started the volunteer-run project because some of Topé’s friends had nowhere to go. The group is raising £5,000 to make the Christmas event happen for around 80 young people. While the law was recently changed to allow young people in care to be supported beyond 18, Christmas and New Year – times when most people are with family – can be an isolating and difficult experience for many young people in care.
You can follow the project on Twitter: @TheTopeProject or find it on Facebook and help raise the £5,000 needed to run this important event again this year via JustGiving.
It is a disease one in three of us will develop – 135 million people will have it by 2050 and its worldwide health and social-care cost in 2010 was estimated at £400bn…yet no one is ready for the worldwide pandemic that is dementia.
My Guardian interview with leading microbiologist Peter Piot today, coinciding with the G8 Summit on dementia, underlines why international action is vital. Piot, who spent four decades investigating the world’s deadliest diseases and whose pioneering work made HIV/Aids a global priority, is in no doubt that dementia is now the world’s greatest social, economic and moral challenge.
“There’s not enough awareness of how bad the problem is,” warns Piot, a global health expert and director of the London School of Hygiene and Tropical Medicine. Like most of us who know someone who has had or is living with dementia (my grandfather had it), Piot’s father-in-law had the illness, so he knows first hand of the denial and stigma it brings: “It is the most neglected of all the neglected health problems and it’s a hidden problem because people are at home – they’re already written off by society”.You can read the rest of my piece is here.
When Piot argues that the discrimination faced by people with dementia is tantamount to a “human rights violation” and more than just a medical problem, I couldn’t agree more.
Funding and focus on research is essential, but this has to be accompanied by a change in attitudes – and the latter will be an uphill struggle for a society fails to have older people on its radar, regardless of whether or not they have dementia.
How can someone with learning disabilities or mental health issues possibly own their own home? With a long-established but seldom-used form of housing called shared ownership.
The power of the part-rent, part-buy scheme to transform lives is illustrated in a new report, Space to live, published today by social care and housing provider Advance and Disability Rights UK. I was involved in writing part of the report and met home owners like Xenia Kyriacou, who is non-verbal and has complex needs.
Once asked to leave a restaurant after showing challenging behaviour and overturning a table in frustration (she was overwhelmed), only a few months ago, in another local restaurant near the two-bedroom flat she part-owns in east London, Xenia enjoyed a birthday lunch, was presented with a card from the owners and offered a discount on her return.
The change has happened since she moved out of residential care and into her own place.
Home ownership encourages confidence and independence, as was obvious when I met some of the home owners like Xenia and learned more about their experiences. The increased stability can reduce the costs of social care packages and help people get involved in their local areas. The timely report comes as the government considers funding plans for housing for post-2015, including its home ownership for learning disability (HOLD) programme.
Artist Rachel Gadsden’s works on her new project in parliamentDid you know Big Ben isn’t the name of the clock or the tower at the Houses of Parliament, but refers to the great bell inside the building?
How about the fact that the word “parliament” comes from the French, “parler”, meaning “to talk” (and yes, politicians could do with less rhetoric and more action).
These were just two facts my eight-year-old daughter pounced on during a recent family-friendly project at the Houses of Parliament.
This week is Parliament Week, a country-wide series of events that aim to engage people with parliamentary democracy. While the Houses of Parliament is one of the most instantly recognisable buildings in the world and children know its name, what goes on inside it is usually either a mystery or rather dull (unless, my daughter points out, you’re talking about Guy Fawkes).
Our recent visit was part of this year’s Big Draw event, although it reflects the ethos of Parliament Week. It involved an art workshop led by artist Rachel Gadsden to create four new works. Gadsden (who I’ve written about before here and here) is known for disability awareness raising work.
Saint image, by Rachel Gadsden
Gadsden’s ground-breaking project – the first time that the public has had the opportunity to contribute to artworks that will form part of the parliament art collection – is sponsored the Speaker’s Art Fund. The scheme involves the artist combining her own art with pieces created by the public in a series of workshops in Westminster Hall. The aims is to create new contemporary images based on mosaics of the UK’s four patron saints, St George, St David, St Andrew and St Patrick, which are in parliament’s central lobby.
Out visit included a “family-friendly” guided tour about the history, architecture and artwork in the Houses of Lords and Commons. The tour, according to my eight-year-old reviewer was “interesting but a bit too long” (I’d have to agree, despite the engaging anecdotes, an hour and 15 minutes with one stop to sit down can be difficult for most primary school pupils).
However, she “liked the information, like hearing that alarm bells sound in some buildings around parliament to call the MPs to vote”. She was loved some of the Tudor portraits after studying the period at school and was intrigued by the Queen’s robing room. Looking around the Commons and Lords has made some rather woolly concepts a little more accessible and real; she spotted the Commons on television recently, commenting that she had stood in the same room as the MPs.
After the tour, we joined workshop members creating everything from pencil drawings to mosaics based on the art they’d seen in parliament. As Gadsden says, “the subject matter is not set in stone and this is above all an ‘imaginative’ project, and participants contributed a range of drawings to which include interpretations, but also creations which express their personal identities.” Now the workshops are completed – participants’ original drawings were photocopied and included within the saints paintings that Gadsden is creating – the artist is working on the pieces and the public and MPs will have the chance to view them next year.
Work in progress in Westminster Hall, Houses of Parliament
Gadsden, who has the eye disorder retinoschisis and lost the sight in her left eye this year, explains that her work is “underpinned by the notion of disability, viewed from a positive perspective.” As she says, “I just take every day at a time and concentrate on my inner vision rather than what I see with my eye”.
Gadsden has always championed the belief that disability is not regarded as a barrier to success; in 2007 she became the first contemporary artist in residence at Hampton Court Palace and was commissioned for London 2012 by Unlimited, the arts and disability programme launched for the four-year arts programme, the Cultural Olympiad.
Art workshop in parliament
The artist adds: “I hope that my artistic practice stands as an example of the importance of the right of freedom of expression: addressing issues relating to disability and, by doing so, contributing to the process of bringing about cultural change. So this commission has given me the opportunity to not only collaborate with the public at large to create the new ‘Saints’ paintings…but also to give a new younger audience the opportunity to visit parliament for the first time, and to have the chance to see the House of Lords and Commons and learn about the procedure of parliament as part of the overall process…it is vital for young people to have the opportunity to understand parliament”.
Given the current debate about increasing social mobility and aspiration, part of the solution is not only making “authority” more accessible – encouraging young people and people with disabilities to visit the, for example, the government’s seat of power, – but inviting people, once they set foot inside, to take part in something as creative and inclusive as an arts workshop.
* Rachel Gadsden tweets at @rachelgadsden
* Information about parliament’s education service is here, including its latest plans to create a dedicated education centre for children and young people.
* Social care provider Dimensions is hosting an accessible Question Time event this week, which I’m involved in, more details here
These candid images of caring are among the photographs in a new exhibition that focuses on the role of carers and disability.
Capturing the bond between disabled children and young adults and their parents, professionals, siblings and friends, tonight’s show from the charity Netbuddy raises awareness of the challenges faced by young disabled people ahead of the UN’s Children’s Day on Wednesday. The photographs are a refreshing take on the images of disability which usually appear in the public domain; although representing the difficulties experienced by the children and young people and their families and carers, they also present disability and caring in a family and social context.
The Faces of Caring exhibition by Netbuddy, an online community for parents, carers and professionals looking after people with special needs, includes photographs of people with complex medical needs and a range of learning disabilities.
* Faces of Caring starts at 6pm today The Hub, Tanner Street, London SE1. For more information, contact Netbuddy
David BraunsbergMy experience proves the benefits of volunteering for people with autism. I was born in 1959 and diagnosed with autism in 1963, at age four. I was one of Sybil Elgar’s first pupils at her progressive school. She was a pioneer in autism and helped develop my language and communication skills.
I then attended a local primary school in Edinburgh, where my mother and I moved, and a mainstream secondary school in London when we moved back to England in 1972. Art was my strongest subject (I passed several O Levels) and I studied furnishing design and textiles at the London College of Furniture. I got a diploma in art and design. I took more courses after that at a local art college and learned things like etching and print making. My most recent works are computer generated greetings cards (see the website).
Following a traumatic event in 2008, I developed severe depression and anxiety . After some time attending a psychiatric unit, social services support and help from my GP, a social worker suggested volunteering and I was put in touch with Volunteer Centre Camden.
It was through the volunteer centre that I started working at the Holy Cross Centre Trust in July 2011. It is a secular organisation in King’s Cross, London, which supports mental health recovery as well as homeless people, refugees and asylum seekers.
I hadn’t volunteered before although I’d had some experience of work. The place where I worked previously was a company providing unpaid employment for people with mental health issues and was run as a social service. The aim was to manufacture and distribute large volumes of greeting cards to the mass market but I wasn’t happy there. The tasks I was involved in were printing and packing greeting cards and using Photoshop on a computer for designing cards for later use and batch production.
I did not get satisfaction there as I was mostly restricted to printing other people’s designs and this did not allow me to express my own ideas. Their bias was to produce Christmas cards and my inspiration for designs comes from many sources which are irrelevant for Christmas. The repetitive tasks were soul-destroying.
But at the Holy Cross where I am now, my role is to help and encourage people to draw and paint, also to set up and tidy the art materials. I work noon to 3pm. Everyone is kind and friendly and there is a positive buzz to the place. Not only is helping out so satisfying and rewarding, it helps me to gain significantly in confidence and the thrill of feeling respected and valued as part of a team is fantastically liberating. I have made many friends and can see myself thriving there well in the future.
Suitable volunteering should be open to more autistic people as the skills required such as attention to detail, reliability or some special talents are well suited to the autistic trait and may prove to be great assets for the workplace. On their part autistic people can benefit from mixing and socialising with people of different nationalities and backgrounds and feeling respected and valued. To me the regular routines, the structure to the week and the sense of purpose in society are most satisfying.
Autistic people may encounter some difficulties. For example, travelling on public transport, especially long distances, or unintentional and misinterpreted challenging behaviour may cause problems. But with foresight, awareness about autism, guidance and the right support I see no reason why autistic people should not be accepted and be very successful doing voluntary work. I am quite sure that, giving the right conditions, volunteering can be “autism friendly”.
The fact I am high functioning autistic has presented no problems in my volunteering. One of the benefits of working there is that it has a knock-on effect on my closeness, love and affection towards members of the family. I now feel so optimistic about the future. Socialising now comes with ease. I am thrilled with life!
