Saba Salman is a social affairs journalist and commissioning editor who writes regularly for The Guardian. Saba is a trustee of the charity Sibs, which supports siblings of disabled children and adults, and an RSA fellow. She is a former Evening Standard local government and social affairs correspondent.
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
Pat McGuigan, Smash Up The Workhouse Smash up Workfare
Noel Smith, Star of David
Aaron WJ Pilgrim, Michael Drawing Futuristic Cars
Sarah Davies, Leicester Square Busker
Liz Innes, Lake district landscape
Sarah Davies, Black and White Man Dr Salter
William Ball, Face to Face
Ese Imonioro, Gotcha
Aaron WJ Pilgrim, Grace
Graeme Newton, Help
Hope is the focus of a new exhibition by artists from the CoolTan arts and mental health charity.
Stayin’ Alive, which opens today, includes works in different media including oil on canvas, acrylic, printmaking and sculpture. The stigma-breaking south London-based organisation is run by and for people with mental health issues and encourages the idea that mental wellbeing is inspired by creativity. The recent World Mental Health Day was the impetus for the artworks.
Aaron Pilgrim has four pictures in the exhibition and has been involved in CoolTan for five years. His Warhol-like Music (Martika) (above) is about the impact of music on mental health (“and I love listening to the 80’s pop star Martika”). Aaron’s last picture, Drawing futureristic cars (Michael), reflects how he helped to frame the exhibition and taught two volunteers how to mount, cut and frame pictures in the exhibition.
He says of The Globe Theatre & The Tate Modern “the arts help keep me well, especially painting, and these two places represent the arts. This picture is in the style of Turner.
Another of Aaron’s picture, My beautiful daughter Grace is about “being a good dad & my family help keep me well”.
Liz Innes, who has been attending art classes at CoolTan for around seven years, shows piece depicting a Lake District landscape. Liz adds: “I wanted to submit my landscape painting which was inspired by a photograph I took 20 years ago. I enjoyed painting this as it reminds me of my younger, more lively days when I often went walking with friends. I have really enjoyed my work in pen and ink recently and feel it is developing well. I have received a lot of encouragement from the staff and tutors at CoolTan.”
Marjorie Mclean, who has been involved with CoolTan for eight years, is showing her watercolour My Allotment. “For me going to the allotment, being in the sunshine and seeing things grow, producing food, makes me feel hopeful and happy”, she says.
Marjorie McLean, My AllotmentEse Imonioro, Gotcha
Ese Imonioro’s work in collage and felt-tip was done about a difficult time in her life” “At that moment I felt quite persecuted, but I could not convince anyone of what was happening. The painting is of a doctor who helped me during this period and made everyone see the truth. I will always be eternally grateful to him for that and for giving me my freedom.”
Lynn Hughes, Kingfisher
* The CoolTan exhibition runs until 26th November, Monday to Thursday 10-5:45, Fridays 10-5 at CoolTan Arts, third Floor, 224-236 Walworth Road, SE17 1JE
As it’s Fragile X Awareness Day, I wanted to re-post this poem about my sister, Raana. I wrote it as a hearty nod to the fantastic film Mission to Lars which I wrote about for the Guardian.
Fragile X is the most common cause of inherited learning disability in the world – but my sister’s a rare character, as you’ll read here.
My sister, Raana
The Fabulous Raana Salman
What does “puck off” mean, you asked,
When a playground jibe you misheard,
It’s an insult, we said, with a bittersweet laugh,
And “puck” is quite a rude word.
You’re older now, and more in the know,
And you’re still just brilliantly funny,
We love how you call my other half “bro”,
And our mother is always called “mummies!”
You constantly amaze us with all that you do,
You garden, you cook and you bake,
You’re a music fan who likes her tunes loud,
Full volume – bloody early – at dawn break.
You love Chinese food and movie nights in,
And sometimes the pub if it’s near,
Remember your fury when we ordered you juice,
And you indignantly cried: “I want beer!”
“You’re fried!” you shout, knowingly wrong,
After watching The Apprentice on telly,
You say it when angry or to make us smile,
And it shows you’ve fire in your belly.
You’re creative and busy and do stuff we can’t,
You’ve woven and painted and grown,
I love having you stay so you’re able to see
How your art brightens up my home.
You’re thoughtful with gifts, matching present to person,
(You know I like peppermint tea)
We joke how “mummies” foots the bill sometimes,
And you say of your gifts: “They’re for free!”
You love baggy sweatshirts, they comfort and cloak,
You categorically refuse a posh frock,
You know your own mind, you’re fabulous and kind,
And basically Raans, you rock.
Follow the hashtag #FragileXAwarenessDay on Twitter to find out more about the syndrome, or try the Fragile X Society and Mission to Lars.
Punk band PKNShouty, sweary, noisy chaos, big stage personas, a self-proclaimed kick-ass attitude, loud drums, screeching guitars and songs about fighting and sex.
That this is a description of two punk bands currently touring the UK will hardly come as a shock. But the bands confound expectations in other ways; the gigs by Pertti Kurikan Nimipaivat (PKN), from Finland and Zombie Crash, a Brighton heavy metal band, represent the first time that two learning disabled bands will tour the country.
I’ve blogged before about PKN, the band is as likely to write lyrics arguing for respect and equality as it is to sing about avoiding trips to the pedicurist or to complain about residential care homes.
The four date tour, which began on Tuesday, is funded by the Arts Council England and organized by, Constant Flux, an arts organisation that provides opportunities to learning disabled musicians.
Richard Phoenix, who runs Constant Flux, explains: “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.
“This tour is a perfect example to present people with something that totally challenges those perceptions, nothing about the bands music or performance is going to be ‘nice’ in any way shape or form. There will be shouting and swearing, with songs about not wanting to live in residential care, demands for respect and equality, songs about fighting, songs about sex.”
Richard says that the musicians’ uncompromising attitudes musical ability will shatter the stereotypical view of what people with learning disabilities can achieve, “this in turn will hopefully help positively affect attitudes toward those with learning disabilities”.
The fact the bands are touring is a vital part of the project, adds Richard. “Touring is something which is such a huge part of what it is to be a musician and being in a band, but for so long it has been extremely difficult to achieve within the learning disabled music scene because it can be such a financial and logistical nightmare.”
Kalle, who supports PKN, sums up the band’s gung-ho attitude: “They’re feeling very excited about this. They are used to playing gigs in tight schedules but never done this tight… but they don’t think about it. They love going abroad, even though some of them don’t really know, or care, where they are globally.”
Ryan, lead guitarist and vocalist with Zombie Crash, offers this response to the tour: “Metal unleashed from the learning disabled community! It means the ultimate activity for any band to put themselves through, to go on tour, to be as active as you possibly can. The fact that we’re doing this in the month of October and Halloween is the perfect timing for us to unleash hell!”
The fact the tour has promoted as a regular event – rather than as simply a “good cause” – should help “create situations where people with learning disabilities at a gig is normalised, where it’s not unusual or exceptional”, says Richard.
On a practical level, the touring musicians have to be supported. “Making this tour viable for learning disabled artists involved ensuring that, as vulnerable adults, the musicians were supported properly,” explains Richard, “so there are 22 of us on the tour, 10 band members and various members of support, some people require one-on-one support, there are members of creative support and musical facilitation, drivers and myself managing the tour.”
Safe, reliable accommodation has been booked in advance each night, unlike in the DIY touring network where you play a gig and don’t necessarily know where you’re staying that night. “The Arts Council was so important in making this whole thing happen…we’ve been able to book everything in advance and ensure that as much risk as possible is removed, also it has taken away the dimension of the tour being a success in a financial sense and has created a situation where it can be judged on it’s artistic merits.”
One interesting byproduct of the tour planning is that it has created debate about how best to promote the gigs. Richard adds: “The main question that is asked is that if the music can stand on its own then why does the element of disability have to come into the equation? There definitely is weight behind this argument, however in discussion with several artists with learning disabilities and parents and carers of artists, the over-riding feeling is that it is more important for these artists to be strong, empowered representatives of a largely under-represented and marginalised section of society.”
• The remaining tour dates are today, October 3, at Sheffield at Heeley Sport and Social Club (with Skiplickers and Amarous Dialogues) and Friday, October 4, in Brighton at The Green Door Store (with Good Throb and The Soft Walls). Both venues are accessible with accessible toilets and prices are £3 (carers free/donation only).
David Bailey with his stormtrooper helmet for Art Wars, an exhibition to raise awareness about the disappearance of Tom Moore, brother of Art Wars creator Ben.
Tom Moore, who went missing in 2003, his family is now renewing the search to find him.
July 17 2003, Ancona, northern Italy. A 31-year-old Englishman withdraws 150 Euros from a cash point. This everyday event just over a decade ago has huge significance for the Moore family because it was the last financial transaction Tom Moore is known to have made; the last sign his parents and siblings have that he was still alive. Tom has not been seen or heard or from since.
Next week, Tom’s brother Ben is renewing the search for his sibling with an art exhibition featuring high profile artists as well as rising stars of the art world. The aim is to raise both awareness and funds to mark the tenth year since Tom’s disappearance. Proceeds from Art Wars, a collection of Star Wars stormtrooper helmets transformed by internationally-renowned artists, will be auctioned for the Missing Tom fund.
A note written by Tom Moore before he went missing.
Ben, founder of public art enterprise Art Below, has collaborated with Andrew Ainsworth, creator of the original 1976 stormtrooper helmet, to produce the show. Art Wars launches at the inaugural Strarta Art Fair at the Saatchi Gallery next Wednesday (October 9), with works showcased via a series of billboard posters at Regent’s Park underground, coinciding with Frieze London.
“Stormtrooper helmets are iconic, international, instantly recognisable and timeless,” explains Ben of the medium and the message. “I’d been working with Andrew Ainsworth since 2007 and it was always in my mind to do this show with big artists; I had access to these iconic objects and I knew that there were artists who would like to be involved because it’s something we all grew up with [the Star Wars films]. When I realized it was the 10th anniversary of Tom going missing, I needed to catapult myself into action and do something to get the search for Tom re-energized.”
Artists, all of whom were issued with a helmet cast from the original 1976 moulds, include Damien Hirst, Jake and Dinos Chapman, Paul Fryer, Mat Collishaw and David Bailey. Other participants are English multimedia street artist D*Face, Portuguese artist Joana Vasconcelos, Turner prize nominee Yinka Shonibare, street artist Inkie, Mr.BrainWash, East London’s Alphabet Street creator Ben Eine, BP Portrait Award winner Antony Micallef and upcoming star Oliver Clegg.
The money raised from Art Wars will enable the family to travel in the search and to publicise their efforts to find Tom. Ben also hopes to bring attention to the Missing People charity, which has supported his family. There is also a new website Missing Tom to help locate the now 41-year-old.
‘StormOffSki’: Stormtrooper head encrusted in Swarowksi crystals by Ben Moore
As Diana Brown, Ben and Tom’s older sister, writes on the Missing Tom website, the Moores were, and are, a close knit family. “Tom and I growing up, had been as close as it possible to be as brother and sister,” Diana writes. “There was a curious closeness that comes, from having a brother seven years before another two brothers arrived. We were the lucky products of a military family [the sibling’s father was a colonel in the Royal Marines]…We moved house frequently, but were always secure in the knowledge we had loving parents and family all around us.”
Tom was, by all accounts, a genial child (“Tom was blonde, small for his age, good-looking, with a quirky sense of humour, a born actor, musical…with his beaming smile and his floppy fringe. He was thoughtful, kind and never hurt a soul”, writes Diana) but he found it tough at his all-boys school.
Antony Micallef with his ‘Peace Maker’ helmet, for the Art Wars show
After school came a gap year to India where Tom “full of hope and promise”, as Diana writes, grew “disheartened at the huge confusion that India presented to him” and was affected by the drugs he found in Goa. He returned to live with his parents before going to Lancaster University to study theology. There, as Diana found, his mental turmoil was obvious. “He played music, he studied and he went about his daily routines, but he found life very hard. I found my brother, confused and suffering from the onset of mental illness. He left university early and came to live at home.”
The following few years sound like a fragile mixture of travels, doctors and medication, with Tom’s family struggling to find the right balance between supporting their son’s desire for freedom and realising that medication might help bring some stability to his mental health, the “daily dark thoughts” which Diana describes on the website.
A few months before he went missing, Tom had travelled to a shrine in Bosnia, where Ben eventually found him in a nearby town. Ben explains: “When he went away again a few months later, I thought I could find him – but the months started turning into years.”
“The last time I saw Tom, we had game of chess and although I didn’t usually beat him, on this occasion I was winning,” says Ben. “It was a particularly slow game and now I look back at it I realise he wasn’t mentally present, he was quiet and absorbed in other thoughts. I often wonder if I should have kept the pieces how they were, so we can finish the game one day.”
Ben spent the three years following his brother’s disappearance looking for him, visiting well known religious sites across Europe knowing of his brother’s interest in religion, and following various trails (like the cash point transaction). At one point, he says, he was only two weeks behind him, but the demands of work and his own young family meant he eventually had to put the search on hold.
“I still have great hope, confidence and faith that I am going to see Tom again, but we need to get out there and figure out where he is,” says Ben. He wants his brother to know that his aim is to make sure he’s okay, rather than simply dragging him back home against his will. The disappearance of Tom, says Ben, has left a gaping hole in their lives: “I used to rely on Tom for certain things – he was there for me, I wouldn’t go to my dad in a certain situation, or my sister or mother – there things that only he had the remedy for, I miss that.”
As Ben explains in a short video (above and on the Missing Tom site), life as a family of a missing person means struggling with constant uncertainty mixed with optimism: “Searching for Tom is like searching for the holy grail…I see homeless people in the street and wonder if they are on the same journey.” Although a memorial has been held for Tom since he disappeared, his brother refused to grieve for his missing sibling: “He is still alive, that is what I believe.”
Up Down Boy: Nathan-Bessell as Matty and Heather Williams as Odette (photo: Richard Davenport)“I wanted our sons to see that they could aspire to more than retrieving trolleys from ASDA’s carpark. Thank you…”
This comment, albeit tongue in cheek, from someone who watched the Myrtle Theatre Company’s performance of Up Down Boy, reflects some of the appeal of a play praised for both being honest, amusing and uplifting.
The central character, Matty, is played by Nathan Bessell, the playwright Sue Shield’s son. Shield’s semi-autobiographical story, about the peaks and troughs of bringing up her child, aims to present a real picture of parenting a young person with a learning disability.
Nathan Bessell in Up Down Boy (photo: Richard Davenport)
Originally performed at Bristol’s Tobacco Factory Theatre, Up Down Boy is on national tour from September to November, starting with a relaxed performance at The Shed at the National Theatre tomorrow.
The premise is that Matty’s imminent departure for college sparks mixed emotions in his mother: “You’ve got to stop living on Planet Matty. You’re going away. You’re going to have to live in the real world”
As Shields has said: “The day we were told our son had Down’s syndrome we felt like the bottom had dropped from our world. I have now found from my own experiences that having a child with special needs gets you straight to the back of the queue, and that the special needs are often blatantly ignored. I found then that I had a choice – sink or swim. Stand up and fight for what I believed to be rightfully his or stay at the back of that line and accept what was handed out to him. I think too much of him to let this happen.”
