Some thoughtful and attention-grabbing images on display this week at The Big Issues exhibition, a project that forms part of prison outreach work at Surrey’s recently restored Watts Gallery.
Peace on Earth, Louise HMP Send
The exhibition is the result of the Compton-based gallery’s Art for All project. The outreach scheme involves artist-led workshops with inmates in prisons including Send and Coldingly in Surrey and Bronzefield in Middlesex – the pieces featured here are by female offenders at Send and Bronzefield.
Everyone Deserves A Chance, Amanda HMP Bronzefield
The inclusive arts project is in keeping with the beliefs of the gallery’s namesake, Victorian artist George Frederic Watts. Watts and his artist wife Mary Watts supported penal and social reform, believing in widening access to art, using the medium to benefit individuals and the community and arguing against prejudice towards ex-offenders. The couple’s aim of transforming lives through encouraging the socially excluded to engage with art underlines the gallery’s current outreach work.
Mother and Child, Juliet HMP Bronzefield
Art for All aims to build confidence and self-worth in people usually deemed socially excluded – prisoners, young offenders, addicts, and those with mental health issues or experiencing homelessness housing. One former prisoner at HMP Send, for example, was released before Christmas and been accepted on a foundation course at Brighton University. Another participant described the project as “some light in the dull, grey prison world”.
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
“Homelessness doesn’t have a face,” says Janet Marsh, “it can happen to anyone, anywhere.” Marsh, 65, from east London, lost her privately rented home in her 50s after her marriage ended, then became ill with epilepsy and arthritis. “People think homelessness is something you’ve done to yourself, there’s stigma and misconception,” she says.
Though Marsh is now living in temporary accommodation in Newham, her housing situation could not contrast more with the popular image of a tenure defined by shoddy, unregulated properties and unscrupulous private landlords. Marsh is a tenant of Local Space, an innovative housing association that uses private finance to buy homes on the open market, refurbishes the properties and leases them back to the council as temporary accommodation. Read the rest of my piece on the Guardian’s housing network.
Last year Ian Leech, who lost his student daughter to non-Hodgkin’s lymphoma, successfully campaigned for financial support for students whose treatment for illnesses such as cancer forced them to interrupt their studies. As a result of his work, young people no longer have to use student loans for support in such situations. In this guest post, he describes what happened – and why his campaign is far from over.
By Ian Leech
In 2007, having been diagnosed at the age of 20 with non-Hodgkin’s lymphoma, my daughter Melissa decided to suspend her university studies for a year to recover from this life changing illness and concentrate on getting well. It was a huge decision for Mel; she loved university and embraced all that university life had to offer (see this earlier post for Mel’s story).
The original prognosis was positive. Six rounds of chemotherapy three weeks apart, maybe some radiotherapy and it would, in the words of the consultant, just be a bad memory. It doesn’t take a mathematician to work out that treatment would last probably around 20 weeks. In that time Mel would endure extreme tiredness, confusion, have breathing difficulties, mouth ulcers and all that on top of the psychological aspect of being told that at 20 years of age, you have cancer.
Ian Leech and his daughter Mel
Having made the decision to suspend her studies, she applied for financial support. She hadn’t drawn on her student loan and had no savings. The response from the government was that she should either suspend her studies or use her student loan.
I wrote to my MP explaining the psychological effects of her having to abandon her studies and explained that I was under the impression a student loan was to support study and not act as a health insurance.
So began a battle with first, the Labour government and latterly the Conservatives to bring about a change in the law. It was nearly six months before Melissa received any financial support. Three months later she sadly passed away. I wanted to ensure that any student suspending their studies to recover from long term illness would receive immediate financial support.
As more emails arrived from parents and students relating similar stories, I continued the fight after Mel’s death. Eventually, the government listened and on November 1st 2010 the deeming rule was changed. Students were no longer assumed to have drawn on their student loan when suspending their studies. Therefore they could now apply for Employment Support Allowance (ESA). Victory for the little man!
As usual though, the government officials making the decisions had not thought the change through and they failed to remove the long-standing clause that to qualify for ESA, a student must be in receipt of Disability Living Allowance. This meant that the majority of students, when suspending their studies to recover from a long term illness still would not receive any financial support.
It is incredible that in this day and age our government treat people in this way. Mel never wanted hundreds of pounds, just a few quid to enable her to buy a bar of chocolate or other every day items without having to ask mum and dad. She wanted just enough to give her a bit of self-respect during a horrible time.
In my last letter to the Department of Work and Pensions (DWP) I asked Sir Iain Duncan Smith how a student in Melissa’s position was supposed to live. The answer I received from the DWP was that people in Melissa’s situation are a minority and therefore they would do nothing more.
I wrote to David Cameron back in 2007 when he was in opposition. His reply, which I still have, stated that “the Conservative Party are committed to helping the most vulnerable in society”. How times change! Power really does change people!
My battle with the government continues. There are other avenues I am exploring to resolve this. Camping outside St. Paul’s Cathedral isn’t one of them, well, not yet! I still receive emails from parents and students who are experiencing similar problems. In order to receive DLA, you have to have had the condition for three months and it needs to be ongoing for a further six months.
One lady told me how her 20-year-old daughter, diagnosed with cancer, was told she wouldn’t receive DLA because her chemotherapy finished in four months and therefore her condition didn’t meet the six month criteria required for receiving it. It is unbelievable that those making decisions on financial support for seriously ill people think that a cancer patient’s illness ends when the last drop of chemotherapy goes through the veins.
The important matter in all of this is that when a student finds themselves in the position that Melissa did and decides to suspend their studies, they have access to financial support and they don’t have to wait nearly six months for financial support.
I recently received a letter from a lady who had been trying for nearly 12 months to get support for her daughter. Sadly, earlier this year the family were told her condition was incurable. The financial support quite rightly came flooding in, but as she said, “it’s a shame you have to be dying to get the help you needed in the beginning”.
I am all for getting rid of the cheats and scroungers that play the system, but whilst doing that, the government must not lose sight of why the welfare system was originally put in place, to look after those in need, or as David Cameron put it whilst leader of the opposition, in a letter to me in 2009, “to help the most vulnerable in society”
The fight goes on.
* You can read more about Ian’s work and campaigning on his website Mad4Mel. For information about lymphoma visit the Lymphoma Association website.
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
This evening the charity YoungMinds hosts its annual debate in London on the controversial topic of whether our target driven schools system is damaging children’s wellbeing. The charity aims to improve the mental health and emotional well-being of children and young people.
The discussion will be chaired by the BBC’s Home Editor, Mark Easton with panellists including Fiona Millar, journalist and education campaigner, Matthew Taylor, chief executive of the Royal Society of Arts, Karen Robinson, head of education and equality at the National Union of Teachers, Ian Morris, Head of Wellbeing at Wellington College and Adele Eastman, senior policy specialist at the Centre for Social Justice.
After what promises to be a controversial debate, the event will conclude with a short film made by young people who are part of the Very Important Kids (VIK) participation group – of which I am a member – on this subject and the stigma faced by young people with mental health difficulties.
A still from tonight's VIK film about schooling and mental health. Pic: VIK
The film to be shown tells the story of a schoolgirl called Jessie who, though having no diagnosed mental illness is experiencing a great deal of emotional distress and finding it increasingly difficult to cope with the amount of stress she is under, especially with exams looming and pressure from school and family to perform well. Every year around exam time we hear of the stress young people are being placed under to achieve top grades, sometimes to the detriment of their mental health. Our film hopes to shine a light on this issue, promote debate and emphasise the importance of good emotional wellbeing to prevent future mental health difficulties.
A film made by youth mental health campaigners considers if targets damage pupil's wellbeing?Pic: VIK
Acted, directed and produced by members of the VIK group we aim to produce a trilogy of films centred on the theme of young people’s mental health, ranging from emotional problems to more severe forms of mental illness. The message we endeavour to get across is that every one of us is susceptible to mental health difficulties; we all exist on a continuum from happiness, to sadness, to an inability to cope and then mental illness.
Mental health is not simply an affliction of the few but something one in four of us can expect to experience in our lifetime. Because of this understanding how to take care of your emotional wellbeing and building resilience from a young age is vital and another theme which will be interweaved through the trilogy.
Having mental health difficulties from a young age can bring with it its own stigma. Young people can feel stigmatised against in society anyway, for a whole host of reasons and when you add on to that the stigma of having a mental health problem it can be really difficult to trust anyone enough to talk to them about what you are experiencing, or even find someone willing to listen and empathise.
All the young people involved in making this film have experience of mental health difficulties and the desire to challenge old ideas about mental health is something we feel passionately about. Demystifying what it’s like to be a young person with mental health difficulties can go a long way to tackling stigma and educating future generations that mental health isn’t just about mental illness and definitely not something to be afraid of.
* This evening we will also celebrate the launch of a new project, YoungMinds in Schools, to improve the emotional wellbeing of children and young people in school. The programme aims to improve outcomes for children and young people with behavioural, emotional and social difficulties by bringing together professionals, parents, children and young people to create a comprehensive suite of learning resources.
The project seeks to maximise the potential to positively influence the emotional wellbeing and mental health of the whole school community, adults and children, as well as addressing the specific needs of pupils identified as having behavioural, emotional and social difficulties (BESDs).
The programme will work collaboratively with clusters of primary and secondary schools and the services that link to those schools, providing training and consultancy support to schools and gathering the views of professionals, parents and pupils to shape innovative resources. YoungMinds has received two years funding from the Department for Education (DfE) through its Special Educational Needs and Disability (SEND) programme for the YoungMinds in Schools project.
This film should stop you in your tracks. Its power to move puts it almost on a par, as Channel Four’s Jon Snow said at its launch today, with the seminal Cathy Come Home.
The short film by the charity the Private Equity Foundation (PEF) features 11-year-old Luke, one of the 1.6m children living in poverty today. As Luke explains his hopes for the future (or rather, his lack of hope) the film also focuses on the issue of NEETs (young people not in education, employment or training).
The film is part of the Luke’s World campaign to draw attention to the lack of opportunity facing children and young people and explain how their lives can be improved by creating better links between education and employment. As PEF chief executive Shaks Ghosh writes over on the campaign blog, Luke lets us briefly into his world and “gives us a glimpse of a national scandal: what life is like for the 1.6 million children still growing up in poverty in the UK today.”
He may only be 11, but already he knows that his dream to become a vet might never be fulfilled. The poverty he suffers, as Ghosh stresses, isn’t simply “the damp and peeling paint, the depressing tower blocks, the absent father, the 16-year-old sister who has left school to look after her baby and the mother who hasn’t worked for four years”. No, what Luke lacks is life chances and consistent support which will help him stay on the path from school into work.
The PEF has launched ThinkForward, a scheme to plug the gap between school and work. The aim is to support young people hand from 14 to 19, allocate them a personal ‘coach’ to support them with an action plan that encourages them to access local projects and work opportunities.
The launch of the campaign featuring Luke coincides with a report published today by The Work Foundation and the PEF that has uncovered 10 blackspots for youth disengagement – cities where between one in five and one in four young people are not in education, employment or training. The recession exacerbated this problem, with the largest increases in neet rates in those cities which already had high levels. Read more about it here.
As Ghosh has argued on this blog before, early intervention is vital unless today’s Lukes become tomorrow’s neets.
Big society in action is how civil society minister Nick Hurd described the award-winning Paddington Development Trust (PDT) which he chose for his first ministerial visit in May 2010. “Residents have real sense of ownership and power,” he enthused on Twitter about the west London regeneration organisation that supports residents to volunteer a total of 5,000 hours through 350 different volunteering opportunities.
But shortly after Hurd’s praise, the organisation was among the first victims of public spending cuts when £350,000 was axed as the government scrapped its neighbourhood programmes. The trust’s chief executive, Neil Johnston, has spent the last year figuring out how to continue its groundbreaking work. Read the rest of my piece for the Guardian’s Society pageshere.
