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.
* The film Mission to Lars will be released on 8 April, with proceeds going to Mencap to help support people with a learning disability and their families. The film follows Tom Spicer who has Fragile X syndrome, a form of autism. He has a dream to meet his hero – Lars Ulrich – and his sister Kate tries to make that happen.
Young people who have helped transform their neighbourhoods despite are among those being celebrated in today’s Prince’s Trust annual awards.
Amid recent figures showing youth unemployment has nearly hit 1m, it is inspiring to hear how teenagers and young adults are determinedly pursuing work, training or volunteering, despite the kinds of experiences that would lead some to write them off as “hard to reach”.
The trust’s Celebrate Success event honours young people who, supported by one of the trust’s many programmes, have overcome challenges like homelessness or unemployment to make a difference to their communities or to the lives of others.
The community impact award in particular (there are various categories in today’s awards) recognises how young people around the country have breathed new life into a neglected area of a block of flats, launched a support scheme for young carers and turned a disused part of a children’s centre into a a play space. While their projects might not have led all of them into full-time employment, many are on a more secure path to independence.
Young people in Glasgow transformed a disused space in Helenvale Flats (photo: Prince’s Trust)
A group of eight unemployed young people, supported by the Prince’s Trust Get Started programme, revitalised an area in a block of flats in the deprived east end of Glasgow. They created flower beds and benches, built a willow hut for children to play in and sprayed a giant snakes and ladders board on the ground.
The Caring Alone project helps support young carers.
Steven Bland was among the four young carers who created the Liverpool-based Caring Alone Support Service, backed by a cash award from the trust, for a Community Cash Award. They matched the funding with support from other organisations launched the online support support for young carers, offering advice and a forum for information exchange.
A team of young people from Birmingham helped improve Fox Hollies children’s centre .
While participating in the Prince’s Trust Team programme, 10 young people made a disused outdoor space at the Fox Hollies children’s centre in Birmingham into a beach play area. They raised the cash through donations from local businesses and activities including bag packs and car washes.
A stereotype-shattering art project, which uses photography to counter negative mainstream attitudes towards people with Down’s syndrome, is showcasing the last eight years of its work.
Shifting Perspectives Photographic Exhibition 2005 – 2013 is at the South Bank in London until Sunday (31 March) and aims to portray people with the learning disability as individuals, rather than people with a specific syndrome. Carol Boys, chief executive of the Down’s Syndrome Association, believe that the project has shown how people with Down’s syndrome have “the same hopes and dreams as everyone else”.
Down’s syndrome is a genetic condition caused by the presence of an extra chromosome and affects one in every 1,000 babies; there are around 60,000 people with the condition in the UK.
The small group of photographers whose work forms the exhibition all have experience of having had children with Down’s syndrome; the collective came together 10 years ago to create a series of works for Down’s Syndrome Awareness Week (this year’s awareness week ended yesterday).
Among the photographers involved in the ongoing project is Kayte Brimacombe, who documents social issues and whose previous images for the awareness week can be viewed here.
The art and awareness project has toured the UK and Ireland since then, visiting seven different countries. This week’s show reflects the body of work created so far and coincides with a special book marking the work created so far.
A wider range of images can be seen on the project website and admission to the show is free. It’s open from 11am – 6pm until Sunday 31 at the gallery@oxo and Bargehouse.
If only more people had the chance to develop in confidence like Laura Minett.
Laura, who I interviewed for a Guardian social care piece today, works as an expert by experience. Her part-time role through the charity which supports her, Choice Support, means monitoring and inspecting social care services on behalf of social care watchdog the Care Quality Commission. The self-assurance she has developed thanks to the job means that when I misspelt her surname during our interview, she politely – but firmly – asked for my pen so that she could write it out for me herself.
Laura, who has a learning disability, told me she is driven by helping improve support for people who may be less independent than her. As she says in today’s piece in the Guardian: “I like getting out and about meeting people and thinking ‘maybe that’s good maybe that’s bad’. I like having a job and talking to the service users – it’s about their quality of life.”
The views of people who use social and health care services are so often not taken into account, something which a major inquiry into health treatment of people with learning disabilities found this week. Involving people who use services in improving the health and social care sector is vital, but so often consultation is nothing more than lip service.
Not so with the experts programme it seems. Another expert I met, Laura Broughton, stressed that paid work and the recognition that her opinion is valuable has made a huge difference to her life. Both the experts explained they have spotted things that could be improved in residential care (simple things, even, like offering people a better choice of food and drink) and told me that individuals in care tell them their concerns or wishes much more freely than they would a professional or full-time inspector without their personal experience.
Laura Broughton volunteering at London 2012
She has been an expert for just two years, but already speaks in public and to social care professionals about her role. She walked into our meeting relaxed and confident. “I was quite different before doing this,” Laura told me. “I’d never had job before, certainly not in offices, I was more shy. Now I’ve done the experts work, Choice Support is getting me involved in slightly different things as well. I’m training [Choice Support staff and CQC inspectors] and have done presentations and workshops. It’s exciting…I’m travelling quite a lot and getting to know the country.”
Here is some more from the two experts in their own words, which both women previously shared on the CQC and Choice Support websites.
Laura MinettLaura Minett: “If someone said, “What is an expert by experience?” I would answer that I am a person who has a disability and who has first hand experience of using services provided by both health providers and social care providers. I use my experience to talk to others to find out what they think about the care they are getting and if it is good enough for each individual using the service.
I work with different inspectors and have already visited lots of different services like hospitals, a residential college, care homes, assessment and treatment units and secure units. I have recently been part of inspection teams involved in the National Review of Learning Disability services.
My main job is to find out about people’s experiences of the care they receive. The inspector tells me which of the 16 outcomes I need to prepare questions on to ask on the inspection. We arrange a meeting time for the day and go to the service unannounced. This means the provider doesn’t know we are coming. I use my experience to find out what they think about the care they are getting and if it is good enough for each individual using the service.”
Laura BroughtonLaura Broughton: “Being part of this review was a good experience for me. It gave me the experience of what it is really like for other people who have a learning disability. What happened at Winterbourne View was terrible and should have never happened.
Working as part of a team with inspectors was exciting. The work was exciting but difficult too. Sometimes some of the places I visited were not pleasing , they were challenging.
Some of the people I met should have more help in getting a better life. They were often bored and distressed and staff talked to them not as adults but as though they were children. Some of the people weren’t treated as individuals and certainly not in a person centred way. I felt some people didn’t get the opportunities they should have because they couldn’t speak or because others felt their behaviour was challenging.
It was good for me because I’m now a lot more confident, I’ve got a paid job as an Expert by Experience. Having a paid job is new for me as it is with a lot of people who have a learning difficulty. I have a voice and I was able to help other people living in these services to have a voice.
I hope things will change. All people who have a learning disability have the right to good safe services, choices and a good life.”
By Liz Naylor of the charity AddactionWhen I first met Linda, she told me: “When I was growing up I couldn’t imagine being anything”.
I met Linda when I was delivering a training course aimed at former substance misusers who wanted to become “recovery champions” and better support their peers engage in that service.
Although Linda didn’t speak with any great volume, there was something so utterly powerful and authentic in her statement that for a second the room stopped and focussed upon her. It was not a statement of self-pity, or an attempt to claim the title of the bleakest life experience; it was simply a statement of fact – here was a 48-year-old woman who had never thought she would “be” anything.
I would later learn that Linda had “been” sexually abused from an early age by a string of boyfriends that her mother, working as a street sex worker, had brought into the home. She herself had “been” a street sex worker for most of her life. She had “been” trapped in misuse of heroin and crack on and off for the last 25 years. She had “been” the mother of a small child who died due to swallowing Linda’s methadone prescription.
At some point during the day, we were discussing recovery capital and specifically, the idea of people holding different levels of cultural capital. Many participants talked about how when they were young what they had imagined their lives might be – and the kinds of things that had got in the way of these ordinary dreams. I recall that none of the participants had held any particularly grand or unrealistic hopes, just the usual – jobs, children, and a place to call home.
I guess the power of Linda’s statement was that although she had been many things she had never imagined what she might be.
I am proud to work as part of Addaction’s London training team. It’s a small team of three full time workers and one part time volunteer. The major part of our job is delivering something called the Next Project.
This is a 12-week training course providing the necessary skills and training to people who have been affected by substance misuse and, since August 2010, carers or those affected by the substance misuse of someone close to them.
Some might call it a back to employment scheme that really works (imagine that!), which is fine, except quite a lot of the people who do the course have never even officially had a job. We call it a personal development course that supports the participants to make the kind of changes needed to move their lives forward so they can enjoy the kind of lives that meets their human potential.
Rather than work from the assumption that our trainees are “addicts” or “victims” or “burdened with care” – we work from the belief that our trainees are smart enough to be interested in examining their own behavioural patterns. It is, if you like, a psychology course based upon study of self and the personal changes made possible with this knowledge.
We know this works because since 2005 when the Project started to April 2012, 338 people have attended it and 261 have completed it, a success rate of 77%. This has increased to 87% in the last four years as the project has evolved. 9 out of 10 people finishing Next in the last four years have completed qualifications and gone on to further education/training and volunteering. 31% of those that have finished since 2008 are now in full-time employment. This figure increases steadily over time as Next graduates gain experience and confidence from volunteering and further study that enables them to start applying for jobs
The course is purposefully demanding and intense – giving the participants a real sense of achievement when they complete the course. Next is a proven success story, and is heavily oversubscribed, with waiting lists of up to six months. Referral is from the London boroughs (Islington, Greenwich, Wandsworth and Southwalk funding through Terra Firma) that currently fund places, and a place isn’t cheap at £2,500 but the impact of successful completion reaches much further than the individual (Addaction estimates that each person dependent on illegal drugs costs the country around £44,000 a year, compared to £2,500 for each trainee, for a nine month period). In fact the benefits will extend as far as their children, families and the wider community.
Linda secured funding to do the Project. She completed the course. She did not miss one single session. I don’t think she missed a single minute.
We watched Linda transform – her physical presence, body language, voice projection, intellectual reasoning, confidence, self awareness. It was a transformation that Linda initiated within herself, we provided the right kind of knowledge, support, (the occasional) challenge and encouragement. It was as if she understood the importance of the moment. The moment when she finally could see who she deserved to be.
* For more on the effectiveness of the Next Project and its employment outcomes, see this recent piece in the Guardian.
Christmas isn’t all it’s cracked up to be. Pic: The Topé Project (see end of article for info)
Hooray, it’s Christmas! Yes, the season to be jolly is upon us once again. But that’s OK because everyone loves Christmas, right? Well, I’m not a fan and I know I won’t be the only one shunning the Christmas cheer, preferring instead to hide away with old Ebenezer Scrooge until the tinsel is put away and a new year begins.
This Christmas will be a difficult time for many people, even more so for those with mental health problems. Our society expects a lot from us at Christmas; shops, TV, advertisements and jolly newsreaders perpetuate the myth that we all have to be happy simply because it’s ‘that time of year’.
Being unwell at Christmas as a result of a mental health problem is rarely spoken about since the expectation is that everyone ought to be enjoying themselves; quaffing wine, eating too much and watching the Eastenders Christmas special. Knowing that people are suicidal or spending Christmas locked up in a psychiatric ward distorts this myth and exposes the reality of what Christmas is like for many of us.
Why aren’t you happy? It’s Christmas!
Telling people to ‘get a grip’ or ‘pull themselves together’ doesn’t help, ever, but especially not at Christmas when people are no doubt already chastising themselves for not being in the Christmas spirit and feeling like they are letting friends/family down. If this was possible there would be no such illness as depression, nor any other mental health problem. Making someone feel guilty over how they’re not feeling helps no one.
Having a mental health problem is a lonely experience and can make you feel like an outsider. It can be difficult to find people who ‘get it’ and are willing to listen, especially at Christmas when most people would rather be thinking about what presents they are going to buy.
It becomes less acceptable for people to speak honestly because we’re all supposed to so happy. People are more likely to keep quiet about how they are feeling at Christmas because of the pressure to be positive and have everything ‘perfect’ for the day itself. This quest for perfection can be dangerous because it is unattainable and doesn’t allow for people to let others know they are struggling.
Between Christmas and the New Year the usual support systems that people rely on aren’t available. Mental health services close during this period and on Christmas Day itself even places like coffee shops are closed. This may seem like a trivial complaint to some but when you rely on little things to help you get through the day – such as being able to go out each day and sit in the local coffee shop – not having the opportunity to do this can make it more difficult to cope with existing mental health problems and the stress of Christmas.
The disruption to regular appointments with a mental health service can make it difficult for people to know where to turn if things get tough over Christmas. Thankfully there are helplines available, such as the Samaritans, which do a fantastic job supporting people over the holidays. Generally people are told to go to A&E if they are struggling with a mental health problem in lieu of other mental health services being closed, but as you can imagine going into that environment when you’re in emotional distress can be inappropriate and frightening.
A great service in Leeds which offers face to face and telephone support for people experiencing a mental health crisis is the Leeds Survivor Led Crisis Service. Set up by people with direct experience of mental ill health they will be open Christmas Day and throughout the holiday season, providing an alternative to A&E and helping prevent hospital admissions with their helpline and crisis house.
It would be great if more of these services were available to people across the country, particularly at Christmas when many have nowhere else to turn.
* Project supports care-leavers at Christmas, writes Saba Salman
“Christmas conjures up thoughts of a big massive dinner, presents, fun… and then I think about so many young people who don’t have that. For me it’s really important that young people, especially the most vulnerable, have a good Christmas.” These are the words of youth worker Shalyce Lawrence, 24, who was in care for 10 years and who, along with several peers, has launched a project to support young care-leavers who are alone at Christmas.
Shalyce and a group of volunteers in their 20s have created the Topé Project, in memory of a 23-year-old care-leaver, Topé, who took his life several years ago. The scheme’s launch event, Christmas in the Crypt, is a Christmas Day celebration in London for 70 care-leavers from across the capital. Organisations supporting the scheme include the charity Crisis and five London councils, and the group has also been gathering donations to fund the drive.
The aim of the scheme is to create an “atmosphere of belonging”, positive memories and to help young people form constructive relationships. Young people in care are not supported by social services after the age of 18, unless they are in education and based on 2011 figures, as the project points out, 44% of 19-year-old care leavers in London were living in independent accommodation.
Shalyce adds: “It doesn’t mean you are going to be affected by suicidal thoughts just because you have been in care, you can be anyone and go through that. Think about how you can support the people around you, so it doesn’t have to happen to you.”
Read more about the project on The Independent website, find out more via email thetopeproject@gmail.com Twitter: @thetopeproject or on Facebook.
Carved stone hands reading braille, on the exterior of the former Royal School for the Indigent Blind, Hardman Street, Liverpool. The Grade II listed school was built in 1850 (pic: English Heritage)A gap in a church wall speaks volumes about the history of disability in England; lepers’ squints allowed people with leprosy to see the pulpit and hear the service through a small chink in the stonework, without coming into contact with the congregation.
Images of churches with lepers’ squints are among hundreds included in a web-based project launched today by English Heritage. The Disability in Time and Place resource encourages the public to understand changing social attitudes to disability via England’s architecture and shows the influence of disability on the built environment.
As Rosie Sherrington, policy adviser at English Heritage says of Disability in Time and Place: “In essence we can track disabled in and out of the community and back in again by looking at the range of buildings they inhabited.”
The image-led project features institutions and landmarks, among them the Le Court Leonard Cheshire Home, often taken as the first meeting place of the disability rights movement where Paul Hunt began campaigning with other residents in care. The pictures are from English Heritage’s archive and also draw on historical images lent by the charity’s partner organisations.
Disability in Time and Place is being launched at the Graeae Theatre, Hackney (among the country’s leading fully accessible theatres) this afternoon with speakers including Tara Flood, ex-paralympian and director of ALLFIE (the Alliance for Inclusive Education), and architect and access expert Dr David Bonnett, whose pioneering work includes the refurbishment of the Royal Festival Hall.
Guild of the Poor Brave Things, Braggs Lane, Bristol (pic: Brave and Poor Ltd)
Among the places featured is the Guild of Brave Poor Things in Bristol (above), the first meeting places for disabled self-help groups. The visual history also includes the Liverpool School for Indigent Blind, opened in 1791 by Edward Rushton, who was blind. Rushton’s school was the first in Britain that aimed to give people the skills to be more independent.
Other sites featured are churches designed for deaf congregations such as St Bede’s Church in Clapham and St Saviour’s in Acton, both in London (the latter is still used as a deaf church). They have dual pulpits, one for the chaplain and one for the interpreter, as well as bright lighting and raked seating to boost visibility.
English Heritage’s web resource is divided into six sections, each taking a specific historical period – the Tudors or the early 20th century, for example – and looks at the building types associated with it.
Sherrington adds: “In the medieval period we have the idea that disability was a direct consequence of mankind’s sin, and therefore a religious matter. However disability as a result of disease such as leprosy was widespread, and an ordinary part of everyday life. It was not understood in the same way as we see it today.”
Moving onto Tudor times, she says, much of the care provided by monasteries and the church was destroyed during the dissolution, having disastrous consequences on the lives of disabled people. Paradoxically, Henry VIIIs “fools” were people with learning disabilities paid to entertain the court. It was a privileged role and they were thought to have divine wisdom.
“The 18th century saw the idea of disability being a matter of physicality rather than morality,” according to Sherrington, “and providing for the disabled became a matter of civic pride. As such many private asylums and enormous hospitals for the war disabled (like the Chelsea Pensioners) were built.”
With the rise of asylums and workhouses, disabled people were hidden away (although Sherrington adds “ this was though of as a positive move enabling disabled people to receive the ‘treatment’ they needed”). With the 20th century came the attitude that many people had incurable conditions (Sherrington draws our attention to the rise of eugenics “and the perceived need to separate those who were ‘healthy’ from those believed to be ‘inferior’”). But then two World Wars resulted in the notion of “heroic disabled” and the emergence of memorial villages and specialist rehabilitation hospitals.
According to Baroness Andrews, who chairs English Heritage, the project “is a history of the nation’s buildings and of a significant proportion of our population which, until now, has gone unexamined and untold. It is the part of the history of every town and city, with the schools, chapels and hospitals which surround us all each day but it has remained invisible and silent.”
English Heritage worked with a disability history steering group which included disabled employees, disability history academics including Jan Walmsley from the Open University’s Social History of Learning Disability Group and Dr Julie Anderson from the University of Kent who specialises in war disability. Partners included ALLFIE (the Alliance for Inclusive Education). Other sources of advice, information and images include the Greater Manchester Coalition of Disabled People, Disability History Month, the Centre for Disability Studies in Leeds, Leonard Cheshire, the Epilepsy Society, New College Worcester. All the content has been translated into British sign language videos by deaf interpreters.
* English Heritage has also updated its, Easy Access to Historic Buildings, available to download.
Okay, so it isn’t yet December, but can you really look at this this frosty little fellow and fail to feel even a tiny bit festive? He’s just one artistic entry in the charity Netbuddy’s Christmas e-card competition
The charity, which runs an award-winning website and online community for parents, carers and learning disability professionals, invites people to vote via its Facebook site for the design they think should be its e-card for 2012, and the image on Netbuddy’s Facebook site withe most “likes”, wins. All the artwork has been created by children and people with learning disabilities.
The deadline for voting for the seasonal greeting e-card is 10 December and the winning artist will receive a chocolate hamper. Here are some of the other entries – click here to see them all and vote for your favourite:
An image from the Roma and new migrants photo project
The intriguing photographs here are from those in a new exhibition created by children from Roma, Slovak and Polish communities in east London,
The works, created using pinhole photography, have been produced by 12 young people aged eight to 14 from Roma or new migrant backgrounds. The show is part of a Children’s Society project, the Roundabout Arts Project, and the images reflect the children’s views of their heritage and the summer of Olympic sport. The young people from Newham created 20 pinhole photographs and an animated film (below).
An Olympic-related image from the Roundabout Project exhibition
The project, a partnership between the Children’s Society New Londoners Roma/New Migrants Project, art group Click Academy, aims to promote a greater understanding of European migrants and Roma culture, showing the communities’ contribution to London life.
Artist Marta Kotlarska’s Click Academy uses pinhole photography to encourage social change (with the aim of showing it is possible to “make something out of nothing” and at little cost). As Kotlarska has blogged on the Children’s Society website: “Our hopes for the children to learn the realities of the creative process and have the opportunity to express their creativity were realised. Roma children often don’t have access to the arts because of discrimination and social exclusion and we wanted to change this.”
* The Roundabout Arts Project exhibition is open for three weeks at The Hub, 123 Star Lane, London, E16 4PZ, 9am-8pm from Friday 19 October to Thursday 8 November.
July 1984, a Sussex school swimming gala; my 12-year-old self is poised above the sunlight-dappled pool, ready to slice through and glide under the surface like an elegant water nymph.
Sneaking a glance at my competitors, I’m surprised to see them positioned to dive rather than bottom-shuffle off the edge (my trademark style). I can’t really dive. Ah well, arms aloft, knees bent – how hard can it be?
Whistle goes and I spring like a bird through the air..and hit the water horizontally – a plank of wood thudding onto a sheet of thin ice. The impact sends globlets of water over the spectators and shots of pain into my middle. Struggling to regain composure I lumber through the water, more walrus than swan, before finishing 10th. Out of 10.
For the first time in 28 years since that belly flop, I’m bracing myself for a competitive swim.
Water good cause: we're swimming for learning disability charity Netbuddy
My friends and I (collectively known as the Merladies) are taking to the water in October, leaving the keyboard and going overboard, making a splash to raise some cash (donate and we’ll stop the crap puns) in aid of a very good cause, a Dares challenge for the learning disability charity Netbuddy
As the sibling of a (very fabulous) sister with a learning disability, the kind of support Netbuddy offers would have been invaluable when we were growing up.
Our aim is to zip through as many lengths as possible in half an hour and improve that total every week this month.
Merladies? Because we’re too mature to be mermaids. Swimming? Apart from the chance to redeem myself, my recent jaw op means my surgeon’s banned me from anything more hardcore than flailing about in a pool. Otherwise we’d be halfway up Everest. Obviously.
We began our splash for cash this week..here’s how it went:
Week one of the big lather household (anyone got a decent water-related Big Brother pun please?) and my fellow fundraiser Dr Ruth Evans, aka Evans the Eel, joins me at the water’s edge.
Eel bemoans the fact she was always in the ‘bottom swimming group’ at school (bottom stroke – new Olympic sport, sounds kinda fun!) but hopes to rise like a phoenix from the flumes, er flames, with the Netbuddy challenge.
I, meanwhile, am looking forward to what will be the most exercise I’ve done in the fortnight since my jaw op (apart from flexing a bicep to mash chocolate cake into easily digestible clumps).
And we’re off! Eel does indeed power through the water and – ah the indignity – swaps from my slow lane into the fast one.
30 minutes later, we’ve totted up 1500m – China’s Sun Yang set a new world record at London 2012, taking 14 minutes to do the same distance so really, by my, um, scientific reckoning, we’re halfway to matching Olympic record! Huzza!
* See our fundraising page for more info and how to donate to our charity challenge, any amount, no matter how small, would be very much appreciated.
