Had to share these images from a forthcoming exhibition created with people who have learning disabilities.
The show, The Girl With The Heart Shaped Hands, opens on Tuesday March 20th and has been organised by learning disability charity Outreach 3Way. The aim is to improve the mainstream representation of the 1m or so people in the UK with learning disabilities and reflect the personalities of each participant.
The eponymous girl of the show’s title is 38-year-old Samantha Wheeler who lives in Crawley and uses Outreach 3Way’s day centre.
Samantha Wheeler , whose pose lends itself to the title of the art exhibition
The images were taken by photographer Maria-Aurelia Riese who says she hopes the pieces “act as a gentle way of building understanding”: “There is a natural human reaction to feel awkward around those who look and behave differently from what we are used to. Once you really see someone for who they are that melts away. I very much hope this exhibition has that effect.”
Tom Ogle, also featured in the new art show
Participants in the exhibition submitted mini-profiles of themselves, to show the person behind the photo. Tom, 43, above, for example, enjoys “sports, drama, swimming, bicycle riding, listening to my music, walking into town and eating out” and is proud of his drama work. His dream for the future is to do more drama and “get married to my girlfriend.”
Portait of Matthew Dawson
The girl with the heart-shaped hands runs from 20th March to 1st April at Chichester’s Oxmarket Centre Of Arts. You can find out more about the free exhibition here or on the website for learning disability charity Dimensions, which Outreach 3 Way is part of.
Think homelessness and film and you can’t fail but think of Cathy Come Home. While the social action that followed Ken Loach’s cinematic call to arms was a one-off, the film project The Truth About Stanley could be a modern take on that artistic tradition; a visually striking and thought-provoking piece of social realism that seeks to raise not only awareness about homelessness, but funding.
Just today the government’s new homelessness figures showed 48,510 households were classed as homeless in 2011, a 14% rise on 2010. The situation has led one charity chief executive, Leslie Morphy, of Crisis, to demand action from the government amid the “perfect storm” – a combination of economic downturn, joblessness, soaring demand for affordable housing, housing benefit reform and cuts to homelessness services.
This is the dire social and economic backdrop to the forthcoming film shot by award-winning director Lucy Tcherniak. The Truth About Stanley tells the story of two rough sleepers who make unlikely friends; Stanley, an elderly Congelese man, and Sam, 10.
Still from The Truth About StanleyStanley (Oliver Litondo) in The Truth About Stanley
The non-linear narrative is intriguing, opening as it does with the death of Stanley and developing into questions about Stanley’s past and the reasons for Sam being on the streets.
Sam (Raif Clarke), The Truth About StanleySam, The Truth About Stanley
The lines between reality and fiction are blurred as the pair’s friendship develops and Stanley regales his young runaway companion with stories from his past. Or, as the website neatly puts it: “No home, no belongings, plenty of baggage. A short film about a man, his stories and the boy who listened.”
The project, a twist on more traditional donation campaigns, aims to raise money for two homelessness organisations, social enterprise The Big Issue Foundation and charity Anchor House.
The film offers a much-needed focus on the twin issues of older and younger rough sleepers. Entrenched rough sleeping is common among older rough sleepers but accurate figures on the issue and that of homelessness among older people are hard to come by, partly because of the hidden homelessness and the lack of age breakdown in head counts.
According to Homeless Link, however, the 2010 total of street counts in authorities with a known or suspected rough sleeping problem was 440 and generally around 18% are over 50-years-old.
As for children sleeping rough, again the figures lack accuracy, but according to the charity Railway Children, at least 100,000 children runaway in the UK every year and many are not reported as missing by their parents or carers. According to youth homelessness charity Centrepoint, 80,000 young people experience homeless in the UK each year.
The 20-minute film is being produced in association with Oscar-winning Trademark Films and features songs by Radiohead and Mumford and Sons. Stanley is played by renowened Kenyan actor Oliver Litondo, the lead from the international feature film The First Grader and Sam by 12-year-old Raif Clarke. This Guardian piece from last year tells you a bit more.
The trailer and shots here (photographs by Ben Millar Cole) have been released ahead of the premiere on April 2 at the Rich Mix cinema in Shoreditch. The film will be and released online on April 4th.
*To donate text STANLEY2, 3 or 6 to 70300 to give £2, £3 OR £6 to The Truth About Stanley fund or visit the project’s Just Giving page.
100% of the donation will go to homeless charities Anchor House and The Big Issue Foundation. Follow the film on Twitter.
Simon after winning his award for public speaking on autism from learning disability charity Dimensions
By Simon Smith
My mum and dad realised something was different about me when I was about two to three-years-old, because I played differently to other children. I didn’t engage and interact with others. I didn’t cuddle or give eye contact. I had difficulties with speech and hated change.
I started realising from the age of 14-15 that people were treating me differently and this is when I first realised that I was different. At first I felt kind of annoyed about and wondered why I was getting all the attention. I then asked my mother what was going on with me. She told me I was different to the other kids. First of all she told me all the good things about me; such as my brilliant memory and amazing empathy with animals. She also explained why I was having difficulties in certain areas such as making friends and interacting .
I was diagnosed when I was five. I went to a mainstream school with a statement of special educational needs. At school had I one-to-one support, speech and language therapy. I also attended a behaviour unit and later on had support from the Autistic Spectrum Condition Support Services which came into my school to give advice and support.
Being autistic means I am someone who feels and sees the world in more detail then people without autism. I have heightened senses such as sight, taste, touch ,smell and hearing . This means that I can find things incredibly annoying that wouldn’t bother other people or in some cases it means that I find things more interesting.
Looking back, it was when I started school things became a huge challenge. People often thought I was a trouble-maker (mostly the teachers due to their lack of understanding of my autism and my behaviours). Other students often found me very strange and in some cases would be cruel; bullying me because I was different. Being treated badly by people who didn’t understand me made me very negative about my ambitions and myself which still affects me today. The other thing that makes me different is my obsessions, but I’ve used to help guide me through tough times and they have also created opportunities and brought me success, like the award.
At the moment I have no support except from my parents because the local authority says I don’t meet the criteria.
At the end of last year, I won an Erica Award from learning disability support organisation Dimensions for the talks I do about autism. The annual awards celebrate people with autism who help others. It’s nice to feel appreciated for the hard work I do. I’m very honoured by it and I still can’t believe I won it.
Simon, who loves animals, at home with Rona, the family's dog
My talks came about when my mum was working with pre-school children with autism so when one day she asked for some advice on how to support a child, it made me think back to when I was a child of the same age. I looked back on what made things hard for me and told my mum what it was like from my perceptive. I told mum what it was like for me being autistic and how it affected my everyday life.
My mum said she learnt so much more about autism from me that day that she thought it would be really helpful for other parents. She arranged for me to do a talk to the parents of other children like me.
My talks cover a lot of areas including sensory issues, how my brain works, how I learn to communicate and socialise, my repetition,imitation, obsessions and my behaviour issues. I also offer general advice and strategies to help support people and the opportunity to ask questions. I give out evaluation sheets so people can comment on my talk if they want me to add or change anything.
The feedback is amazing. One parent has written: “I got home yesterday and saw my son from a completely different perspective, thanks to your insight and inside knowledge of autism” and a professional commented: “Simon’s talk was super every trainee teacher/nursery/pre-school worker in the country should meet Simon and hear his experiences. I learnt more in one hour about autism that 20 years as a teacher have ever done. I feel very uplifted and look forward to sharing/reflecting to my colleagues.”
I feel happy that I am going to try and give advice which might help people that I’m talking too. Afterwards I feel mentally tired as it takes a lot out of me and I need feedback from people because I find it hard to tell how well I’ve done.
The feedback from my first talk made me want to help more parents, so my mum asked Amaze – an advice service for parents of children with special needs – if they could help. Through Amaze I did a talk to 27 parents. These parents requested that I spoke to the professionals that they have to deal with because they felt that they were often not listened to. So my mum arranged for me to do talks for professionals such as respite services, PRESENS (Pre-School SEN Services) and two local special schools. I do talks for professional services and parent support groups and have done two workshops at a conference.
It makes me feel uplifted to know how much people appreciate my talks, to be told how much of a difference I am making in helping them to understand more about autism from a personal perspective and this encourages me to do more. I believe that information about autism is better when it comes from someone who is autistic.
My plan is to do more talks and to encourage other people with autism to do them with me and to continue my mentoring. My biggest aim would be to form a group of people with autism who would be confident to be able to attend any meeting regarding anything that might affect people who have autism because I feel it’s very important to have individuals with the problems to speak out and have a voice.
I would like to make councils and governments have someone with the learning disabilities or someone with autism actually on board, attending meetings and giving their own personal input which I think we can all benefit from. If I could get the government to do one thing it would be to consult more with the people that experience the conditions that they are making policies about to get their points of view.
* Simon Smith, 23, from Brighton, won the 2011 Erica Award because of his outstanding contribution to helping others understand what it is like to experience autism.
Season’s greetings from The Social Issue – to mark the jollities, here’s a snapshot of some of the upbeat posts and pictures about people, projects and places featured over the last 12 months. This festive pick is by no means the best of the bunch – the inspiring stories below are included as they’re accompanied by some interestin and images and almost fit with a festive carol, if you allow for a little the poetic and numerical licence…
Very huge thanks to the Social Issue’s small band of regular and guest bloggers, all contributors, supporters, readers and everyone who’s got in touch with story ideas and feedback. See you in January.
On the first day of Christmas, the blogosphere brought to me:
A tiger in an art show Batik Tiger created by a student at specialist autism college, Beechwood
Two JCBs The Miller Road project, Banbury, where agencies are tackling youth housing and training. Pic: John Alexander
Three fab grans Hermi, 85: “I don’t really feel like an older woman.”
Four working teens From antisocial behaviour to force for social good; Buzz Bikes, Wales.
Five(ish) eco tips Eco hero Phil uses a “smart plug” to monitor domestic energy use
Last Christmas was the first time in 14 years that Alex (not his real name) had spent the season with his family. It was the first time his parents had come to his house for Christmas dinner, the first time the 46-year-old had shopped for the meal, prepared it, laid the table and chosen the wine.
The event would have been inconceivable just a year before when, Alex, who has a severe learning disability, was living in a care home in Kent. He had already spent many years in a long-stay hospital ward. His challenging behaviour ranged from kicking to spitting and usually resulted in him being restrained by four members of staff, one pinning down each of his limbs, for up to 45 minutes.
Alex’s story, which outlines his path to appropriate social care, is among the powerful testimonies published in a report today by the Voluntary Organisations Disability Group (VODG). I was involved in producing the report for the VODG, which brings together more than 50 voluntary sector disability organisations, and I also manage the group’s blog.
Gavin Harding, who co-chairs the National Forum for People with Learning Disabilities and chairs self-help advocacy group Voices for People, writes in the foreword to the publication: “There is another way, which is presented in this report. It’s about putting people with learning disabilities and their families at the centre of planning and delivery of care.” Harding adds: “Care is about people, it’s not just a process.”
The VODG report outlines the key elements that can contribute to high quality, cost-effective care.
You can read more about the report via this blogpost.
William Wright left his Somerset school with a handful of GCSEs. Confused about what to do after school, he felt his teachers had “given up” on him. Wright found temporary work as a plasterer but lacked the qualifications for a permanent job. Unemployed and uncertain, he fell into a vicious circle; being jobless destroyed his confidence and made him feel depressed, which made it difficult to find work. Now 26, he says: “I felt like a failure. Unemployment knocked my self-esteem and made me feel like I wasn’t good enough at anything.”
One million 16- to 24-year-olds in the UK are not in education, employment or training, just as William was. Read more here in my piece from the Guardian on Saturday.
And in the same youth supplement this piece by Kate Murray, who also blogs on this site, explores how to restore young people’s faith and involvement in politics with comments from MPs – including children’s minister, Tim Loughton – youth workers and community activists.
Chances are you’ve never heard of the world’s most common inherited learning disability – it was news to me until my sister was diagnosed with it several years ago.
Today is Fragile X Awareness Day in 16 European countries including the UK. The syndrome affects least one in 4,000 girls or women and one in 6,000 boys or men, as my family discovered in 2003 when my sister was diagnosed at 14.
Late diagnosis of Fragile X, as in my sister’s case, is sadly all too common – but it’s still better than the condition remaining undiagnosed (again, common due to it being misdiagnosed as autism or misunderstood by many professionals).
Recognised just 30 years ago, it is diagnosed by a blood test revealing the abnormal “fragile” site on the X chromosome. Symptoms include social, language and emotional problems, mild to severe learning disabilities, and autism-like behaviour.
Professor Jeremy Turk, who advises the support charity the Fragile X Society on the psychiatric and psychological aspects of the syndrome, is calling for people diagnosed as autistic who also show signs of developmental delay to be tested for Fragile X. “The relatively low levels of diagnosis of Fragile X Syndrome is a matter of extreme concern as it prevents families from receiving the correct support, understanding their condition and restricts their ability to make informed decisions about their lives,” says Turk. “A lack of awareness of Fragile X Syndrome amongst health professionals, and society in general, contributes to this low level of diagnosis and the failure to understand the links with, and important differences from, autism.”
As with any complex need, the symptoms of Fragile X vary hugely, making a single template of care impossible (even if the current drive towards person-centred care would allow it) and “the system” a minefield for parents and families. With children, as we found in my sister’s case, the multi-agency support can include the health visitor, GP, paediatrician, school special educational needs coordinator, social worker, care manager, speech and language therapist, occupational therapist and physiotherapist. That’s if you’re lucky, have the time, energy and the wherewithal to negotiate the system.
And, as is par for the course in social care, just when you think you’ve secured the right tailor-made support, it’s dismantled and you have to start all over again once your child moves from children’s to adult services. All too often the “transition” – a catch-all term that makes it sound like an elegant, seamless move, oh the irony – to adult care is as relentlessly bumpy as that first roller coaster of diagnosis and the initial securing of provision.
I explained my family’s experience in a Guardian piece several years ago, from the furtive glances from strangers at her “inappropriate” behaviour to the fact that family excursions would involve packing a few small towels, just in case Raana got so stressed that she vomited. Since then have described my sister’s Raana’s path to the right care and support on this blog. We have been fortunate; our experience has always been more of a series of battles than full-blown crises, but I know others are not so lucky.
In 2006 Alison Davies jumped from the Humber Bridge with her 12-year-old son, Ryan, who had fragile X. She had complained that Ryan was not receiving his entitlement of respite care, although this was investigated and found not to be the case. The contrast between the chink of optimism my family and I had just started seeing in my sister’s case, with her tentative moves towards independence and finding her own voice, and the total, utter despair and isolation that Alison Davies must have felt was horribly stark.
After that incident on the Humber Bridge, Labour MP Betty Williams went on to table an early day motion in Parliament, criticising the insufficient support for families of children with Fragile X and autistic spectrum disorders that pushes many to “crisis point”. Just recently I read an extremely moving piece by a mother who admitted that “as a parent you feel guilty, and then you feel alone”.
Half a dozen years after Williams tabled her motion, I wonder how much has really changed for families affected by Fragile X, while remaining hopeful about the impact of today’s awareness day.
* read about Fragile X on twitter using the hashtag #fragilexday
The painting here, depicting the torment of a lost past and an unknown future, is among the intriguing works in a new exhibition opening in London today which focuses on mental health. The arts event by charity CoolTan Arts, an organistion run for and by people with experience of mental health issues that I’ve blogged about before, includes collage, painting, sculpture to batik and drawing.
William Ball, the artist behind the piece above, In a Room, says his use of black and yellow reflects concepts of death and danger. Another of Ball’s pieces, Through a Window, meanwhile, represents the optimism and growth he found at CoolTan; it is no coincidence that the artist also cares for the garden at the arts charity.
Ball has been a CoolTan regular since 2003 after a mental health crisis sparked by his mother’s death a few years previously, redundancy and relationship breakdown. “My future looked very bleak, at 51-years-old my life seemed as if it was over.” Almost sectioned and prescribed “heavy medication”, Ball was introduced to CoolTan Arts by a friend: “The people were warm and supportive. I soon visited regularly and enjoyed being part of it.”
The artist’s story is testament to the charity’s work which aims to change perceptions of mental ill health. The organisation, based in Southwark, south London, believes that mental wellbeing is enhanced by creativity.
Here are a few of the other pieces on show until November 30th at Carnegie Library in Herne Hill, south London.
Geometric Patterns, Marjorie McLeanView from the Southbank of Tower Bridge, Aaron PilgrimUntitled, Graham NewtonThrough a Window, William Ball
The free exhibition opens today at a Library, 188 Herne Hill Road, SE24 0AG, and runs until November 30. For information call 0207 701 2696 or email: suzie@cooltanarts.org.uk
When I asked my kids to tell me how they felt about visiting their grandma, who has dementia, in her care home, they were honest. “It can be a bit spooky because there are a lot of people there who can’t remember things,” said my eight-year-old. “It’s sad sometimes when we see her, especially when she says she thinks you’re her sister. I don’t really like hearing that. I remember when she was in her own house and she could make herself a cup of tea.”
Hard as it was to hear those words, I can’t say I find my daughter’s reaction surprising. I often find a visit to my mum “spooky” too. Although her care home is very good, it’s not somewhere I’d ever wanted her to be. It’s tough seeing her now, so different from the active person she once was, and the behaviour of people with dementia can be disconcerting and at times downright distressing. I initially found the resident who repeatedly cries out: “I feel terrible” very upsetting – and I’m supposed to be the adult.
The children and I have talked about how my mother used to be, why she gets confused now and why it’s so important that we spend the time that we do with her. My five-year-old summed it up well: “If we didn’t go, she’d be upset and she’s your mum.” But although we have often talked about dementia, and how it makes them feel, I’ve sometimes felt I was struggling to explain what was going on.
That’s why I was so impressed to find The Milk’s In The Oven, a booklet published by the Mental Health Foundation, to help children understand a bit more about dementia. Simply written, with practical exercises to encourage children to think about what it might be like to lose their memory, it’s an effective tool both for the classroom and for families affected by dementia.
Toby Williamson, head of development and later life at the Mental Health Foundation, explains that the booklet, originally published more than a decade ago but updated this autumn, is designed to help address some of the stigma surrounding dementia. “What we are trying to do is help young people understand what dementia is and how it affects the person,” he says. “It addresses the fears children might experience and the feelings they might have of being embarrassed or angry. What it is saying is actually you might well have those feelings, it’s understandable and you can talk about it. We want to reduce the fear of going to visit people with dementia. Social relationships are incredibly important for people with dementia – even in the final stages, a bit of contact, just holding hands, can mean so much.”
As Williamson points out, most families in the UK will, at some stage, have a relative or friend with dementia. It’s important, he stresses, that people know more about the disease, both so that they can support the person affected and so that they can encourage relatives to get an early diagnosis, often so valuable in terms of treatment and preparing for what’s ahead. And even for those children who don’t know anyone with dementia, there’s huge value in learning more about it.
Schools are increasingly teaming up with health professionals to build the links which can foster greater understanding. One impressive project is in Doncaster, where pupils from three schools now visit day centres across the town, taking part in activities like baking, sewing, singing and playing dominoes with people with dementia.
Mary Beardsley, the team manager for the local NHS trust’s Doncaster Community Memory Therapy Service says, the youngsters involved, who are aged between nine and 11, usually don’t have any personal experience of dementia. But thanks to the project they have built strong relationships with the service users, gaining a real respect for them as individuals. For the older people too, it’s been an overwhelmingly positive experience.
“Our patients gain so much confidence – it puts them in a position of power being able to teach the children something,” says Beardsley. “When you get dementia, you lose your confidence and you don’t think you are good enough. Seeing the interaction between children and patients is fantastic. The children grow to love them and the patients can’t wait for them to come.”
That recipe for a better understanding of dementia through building new relationships is one I can see developing in my own children. As they talk with some of the residents at my mum’s home, I hope they are seeing that older people with dementia need our support and respect. It’s a lesson that, as the numbers with dementia rise, more of the younger generation will need to learn.
This evening the charity YoungMinds hosts its annual debate in London on the controversial topic of whether our target driven schools system is damaging children’s wellbeing. The charity aims to improve the mental health and emotional well-being of children and young people.
The discussion will be chaired by the BBC’s Home Editor, Mark Easton with panellists including Fiona Millar, journalist and education campaigner, Matthew Taylor, chief executive of the Royal Society of Arts, Karen Robinson, head of education and equality at the National Union of Teachers, Ian Morris, Head of Wellbeing at Wellington College and Adele Eastman, senior policy specialist at the Centre for Social Justice.
After what promises to be a controversial debate, the event will conclude with a short film made by young people who are part of the Very Important Kids (VIK) participation group – of which I am a member – on this subject and the stigma faced by young people with mental health difficulties.
A still from tonight's VIK film about schooling and mental health. Pic: VIK
The film to be shown tells the story of a schoolgirl called Jessie who, though having no diagnosed mental illness is experiencing a great deal of emotional distress and finding it increasingly difficult to cope with the amount of stress she is under, especially with exams looming and pressure from school and family to perform well. Every year around exam time we hear of the stress young people are being placed under to achieve top grades, sometimes to the detriment of their mental health. Our film hopes to shine a light on this issue, promote debate and emphasise the importance of good emotional wellbeing to prevent future mental health difficulties.
A film made by youth mental health campaigners considers if targets damage pupil's wellbeing?Pic: VIK
Acted, directed and produced by members of the VIK group we aim to produce a trilogy of films centred on the theme of young people’s mental health, ranging from emotional problems to more severe forms of mental illness. The message we endeavour to get across is that every one of us is susceptible to mental health difficulties; we all exist on a continuum from happiness, to sadness, to an inability to cope and then mental illness.
Mental health is not simply an affliction of the few but something one in four of us can expect to experience in our lifetime. Because of this understanding how to take care of your emotional wellbeing and building resilience from a young age is vital and another theme which will be interweaved through the trilogy.
Having mental health difficulties from a young age can bring with it its own stigma. Young people can feel stigmatised against in society anyway, for a whole host of reasons and when you add on to that the stigma of having a mental health problem it can be really difficult to trust anyone enough to talk to them about what you are experiencing, or even find someone willing to listen and empathise.
All the young people involved in making this film have experience of mental health difficulties and the desire to challenge old ideas about mental health is something we feel passionately about. Demystifying what it’s like to be a young person with mental health difficulties can go a long way to tackling stigma and educating future generations that mental health isn’t just about mental illness and definitely not something to be afraid of.
* This evening we will also celebrate the launch of a new project, YoungMinds in Schools, to improve the emotional wellbeing of children and young people in school. The programme aims to improve outcomes for children and young people with behavioural, emotional and social difficulties by bringing together professionals, parents, children and young people to create a comprehensive suite of learning resources.
The project seeks to maximise the potential to positively influence the emotional wellbeing and mental health of the whole school community, adults and children, as well as addressing the specific needs of pupils identified as having behavioural, emotional and social difficulties (BESDs).
The programme will work collaboratively with clusters of primary and secondary schools and the services that link to those schools, providing training and consultancy support to schools and gathering the views of professionals, parents and pupils to shape innovative resources. YoungMinds has received two years funding from the Department for Education (DfE) through its Special Educational Needs and Disability (SEND) programme for the YoungMinds in Schools project.
