Ever considered what someone who’s homeless wears to a job interview?
If you’re trying to get back on your feet and into work or training, whether you’re homeless, long-term unemployed or disadvantaged, what you need is smart clothes, but what you make do with is mis-matched separates in the wrong size or style.
Charities, night shelters and hostels receive donations – from food to clothing and practical kit like sleeping bags – and there are plenty of great schemes that support people into volunteering, training or work (that’s if there are jobs to come by and employers willing to hire). But while someone might have the skills and experience for employment, what’s often missing is the confidence-boosting garb to help them look and feel the part.
So I was interested to hear that the second annual Suit Amnesty launches next month and lasts throughout May. The aim is to help homeless jobseekers back into work by encouraging people to gift their unwanted suits.
More than 2,000 suits were collected in last year’s campaign, going to 22 different charities. Sian Thomas, marketing officer at Newcastle charity The Cyrenians describes last year’s donated suits as “perfect for our back-to-work projects which are all about getting people off the streets and preparing them for working life”. She adds: “Owning a suit makes a massive difference and will help our service users achieve their full potential.”
The scheme works with charities like The Cyrenians and Manchester’s Booth Centre that run back to work schemes.
Businesses can take part, acting as drop off points, and boosting their social responsibility profile in the process (apparently some of the firms that took part last year reported up to 14% increase in web hits during the campaign).
Accessible drop-off points include a variety of businesses including The Marketers’ Forum in London, the Malmaison hotel in Newcastle,retailer T.M. Lewin in London and various health clubs, hotels, bars and banks. More information on the Suit Amnesty website.
By coincidence, as I was reading about the project, I also came across a great scheme, Undergarments for Everyone, started by University of the West of England student Ed Tolkien to distribute new underwear and socks to homeless people in the Bristol area.
Last December, Tolkien collected and redistributed hats, scarves and gloves to local people on the streets, but he says many told him the hardest thing to come by was underwear.
Cash donated via collection boxes at the university and at two Salvation Army charity shops in Bristol, will be spent on new pants and socks and given to two Bristol homelessness charities, St Mungo’s and the Julian Trust night shelter.
Sometimes the simplest of ideas can have a big impact.
It’s an uphill struggle for those with so-called invisible difficulties (people with conditions on the autistic spectrum, for example,) to achieve mainstream representation or indeed capture the attention of broadcasters, newspaper editors, politicians and the public.
So imagine the challenge for those with more visible differences.
If you see facial disfigurement in movies, its usually a handy hint just in case you have trouble figuring out the baddie (think Nightmare on Elm Street’s Freddie Kreuger and just about every Bond villain). Trying to see if I could disprove this theory, I randomly remembered Liam Neeson in Darkman – scarred, with a grudge, ultimately fighting for justice – but then looked up the tagline” “hideously scarred and mentally unstable scientist seeks revenge against the crooks who made him like that”. Ouch.
Movie memo to kids (they might not know Freddie Kreuger but you can be sure they know Batman’s The Joker or Harry Potter’s Voldemort): look bad on the outside, and you’re bad inside.
Today, Changing Faces, the charity for people and families whose lives are affected by appearance-altering conditions, marks or scars, launches a nationwide film campaign. Please watch it, it’s powerful, elegantly produced and only a minute long.
You might already have spotted the charity’s poster campaign not so long ago which aimed to stop people in their tracks long enough to make them think (instead of simply staring). Today’s Face Equality on Film campaign, it is hoped, will go some way towards tackling the prejudice and crass assumptions experienced by people with facial disfigurement.
The campaign calls for balanced portrayals of people with disfigurements on screen and the film, which will be shown in 750 Odeon cinemas, invites audiences to challenge their assumptions about Leo Gormley, a man with burn scars. It also stars Downton Abbey actor Michelle Dockery.
As a teenager in the ’80s, my first foray into the mind-boggling world of skincare and “beauty” products involved a desperate desire to cover barely perceptible blemishes, inspired by the seemingly zit-free stars on my Smash Hits front cover. But since, then the concept of “beauty” has become even more extreme, and digital wizardry can clear imperfections in the blink of a heavily-made-up eye.
I’m conscious that my seven-year-old daughter, for example, is growing up in a media environment dominated by images of identikit, airbrushed, photoshopped lovelies projecting an unobtainable and flawless version of “looking good”.
In a world where older women are elbowed off the television news because their faces, rather than their news judgement, start to sag, what hope for those whose features even further removed from what is deemed be aesthetically pleasing? Changing Faces has already worked with Channel Five news to shatter such stereotypes.
But if women, ethnic minorities and people with disabilities are under-represented in television, then people whose differences are more obvious are, ironically, even more invisible.
And if facial differences feature on television, they do so in a medical capacity, in documentaries that present abnormality as something to be gawped at or “put right”. While the concept behind The Undateables might have been well-intentioned, it was the title of the show that put me off.
As Changing Faces’ chief executive James Partridge said in response to that Channel 4 series: “TV series with derisory titles makes life just that bit more difficult – it’s so unnecessary and it’s unfair. Very good factual and sensitive documentaries on disfigurement-related topics are frequently spoiled by offensive titles such as ‘Freak show family’, ‘The man with tree trunks for legs’ and ‘Bodyshock’. They are contrived to attract audiences but actually label the human being in the film in a sensationalist and voyeuristic way, treating him or her as an object rather than a person.”
At the risk of getting sidetracked down this road, I remember gritting my teeth a few years ago to get past the utterly ludicrous title of The Strangest Village in Britain. It was, was in fact a sensitive portrayal of life at Camphill’s Botton village which featured much of the good support that has made a difference to my family’s life – not that you’d know that from the objectionable title.
Back to today’s campaign launch; a YouGov survey of 1,741 adults commissioned by the charity last month found that bad teeth, scars, burns and other conditions affecting the face are viewed as the most common indicators of an evil film character. According to the poll, ethnic minorities, bald and disabled people are all thought to be portrayed in more diverse ways than those with disfigurements.
Responding to the poll, 66% said people with bad teeth mainly play evil characters and 48% said that people with conditions altering their appearance mainly play evil characters. Meanwhile, 30% said that bald people mainly play evil such roles compared to 13% who felt those from ethnic minorities mainly portrayed bad characters. Interestingly, 6% said that people with physical disabilities (in a wheelchair or have missing limbs) mainly play evil characters.
Partridge adds of today’s campaign: “It would seem as if all the film industry has to do to depict evil and villainy is apply a scar or a prosthetic eye socket or remove a limb and every movie goer knows that it’s time to be suspicious, scared or repulsed…Freddie Krueger, Scarface and Two-Face are just some of the names that our clients get called at school, on the street and at work. They have to put up with people laughing at them, recoiling, running away or staring in disbelief that they can and do live a normal life.”
* You can sign the charity’s online petition demanding an end to the stigma reinforced on screen.
One of my biggest regrets is that I didn’t take down more of my mother’s stories before her slide into dementia accelerated. I would have liked to know more about her brief engagement to a Vietnamese diplomat, or the time she visited Benidorm when it only had two hotels, or what more she could tell me about her older brother who was killed in the war.
That’s why I was fascinated to meet David Clegg, the man behind an inspirational project dedicated to collecting the life stories of people with dementia. His Trebus Project has collected a huge range of stories, some of which have been published in two books and collected on a record and some of which have formed the basis for a Radio 4 series, produced by Paul Whitehouse and Charlie Higson. He’s now working on a short film.
The prime minister is due to announce a major funding boost for dementia research, reaching £66m by 2015, from £26.6m 2010. He is due to say that “the quiet crisis” is one that “steals lives and tears at the hearts of families”
David Clegg’s Trebus Project is about revealing the fascinating and rich histories of people with dementia; it is about celebrating the lives that appear to have been lost.
Trebus began after Clegg closed down the art gallery he used to run and began working on art projects with care home residents. The very first person he met happened to be a woman with a fascinating tale to tell: she’d once been the girlfriend of the notorious acid bath murderer John Haigh.
“Nobody knew it,” he recalls. “They saw to her needs – it took two people to get her into a hoist for example, but they didn’t know anything about the fact that she was bohemian beyond belief. She would have given William Burroughs a run for his money – she’d hung around with Princess Margaret and made her way back from the south of France wearing only a fur coat and high heels.”
Sheila, one of the Trebus "storytellers" in her extrovert younger daysSheila socialising (note she's standing in front of cricketer Fred Truman)Sheila at her care home, in front of a portrait of her younger self
Clegg is full of anecdotes about the people he’s spoken to. One of my favourites comes from an elderly gay man, who remembered celebrating VE day in London. “I asked him: ‘Did you go to the Palace and see them on the balcony?'”, Clegg says. “He replied: ‘No I was in the toilets – I got off with seven soldiers that day and one more in the tube.’”
It’s a perfect illustration of Clegg’s point that far too often we try to sanitise the lives of people with dementia. “A person with dementia is presented as someone fading away, leached out, who’s a shadow,” he says. “But many of the people I’ve worked with are not shadows – they are trying to make sense of their lives in difficult circumstances. They are not any less as people – they can be as funny, vibrant, passionate and randy as they ever were.”
His is a refreshingly unsentimental view of dementia. “We need a new story on dementia. We either present it as a global epidemic or a tragedy,” he says. “But we have got to get the message across that these are people who were not always old, who have lived lives that were full and eventful. Sometimes we might disagree with what they did or the opinions they held but dementia care needs to grow up and embrace some of the complications.”
Clegg, who did a stint working as a carer to see what it was like, plays down talk of being an agitator for the human rights of people with dementia. “I go in and listen and keep coming back,” he simply says. But his project does shine a light on the appalling way older people can sometimes be treated.
A striking shot from the Trebus Project, this time of Marianne, another storyteller
Take the story of John, a man with no living relatives, who when Clegg first saw him was lying on a bed staring at the ceiling, in a completely bare room without even a clock to mark the passage of time. When care home staff were asked by Clegg to bring him a clock they did – but then fixed it on the wall behind his head.
Clegg says the vast majority of care workers do their best, reserving his ire for the lack of resources to stimulate residents and the managers or directors who only want to fill their beds – and who have sometimes banned him from their premises because they were nervous about what he was doing.
His main motivation, he says is to collect words that would otherwise be lost. In the process, he is putting together something incredibly powerful: stories that are sometimes funny, sometimes moving, sometimes, as he recognises, almost like a Samuel Beckett play in their bleakness.
The Trebus Project provokes you into looking behind dementia stereotypes
It also, says Alison Wray of Cardiff University, has very real benefits for the person with dementia, putting them at the centre of the process and allowing both them and their carers to reconnect with their identity. In Clegg’s recent work, he has been doing less editing to give the stories a traditional narrative structure. Instead they are presented as fragments. Says Clegg: “It can show what dementia is like from the inside.”
To buy the publications or to donate to support the work of the Trebus Project, go to the website or email information@trebusprojects.org
Whose pants do you pop on? Whose name’s in your knickers? Who’s behind your briefs? Who styled your smalls? And just where is this intro going?
Enough already. While retail guru Mary Portas last night kicked off her pledge to reignite the UK clothing industry with a range of 100% British knickers, one campaigning social entrepreneur in the south of England has slowly, steadily and rather stylishly been making ethical underwear since 2009.
Becky John in the Who Made Your Pants factory, Southampton
Who Made Your Pants is based in Southampton and run by Becky John. Each pair of pants is sent out with a tag which allows you to find out who made them. There’s something of an interactive knicker-namechecker where you punch in the date on the tag and check who made your pants.
The organisation’s quirky name belies its strong, pro-woman campaigning zeal and while it’s less bra-burning and more pants-producing, the ethos is simply “amazing pants, and amazing women”.
The business is a women’s co-operative which employs seven women, mostly refugees. From the fabric that goes to make the underwear (recycled from end of season lingerie stock sold by big companies that would otherwise go to waste) to the working conditions in the small factory, the company is ethically-run.
The women are from Afghanistan, Somalia, the Sudan and potential workers come via refugee support agencies (although the firm now has a waiting list for employees). There is training and support as well as a computer suite for the women to use email and the internet, so the factory is something of a social and community space as well as a workplace.
While ethical clothing ranges are nothing new (and neither, for that matter, are undies with a social conscience), the Southampton women’s co-op commands attention as a small but perfectly formed community-based drive to make a difference.
Some of the UK’s most inspiring performers are taking part in a two-day disability arts showcase that kicks off in Leicester tomorrow.
Embrace Create Connect, 15-16 March, is a national conference for performers with a learning disability and for those who work with people who have a learning disability.
Movers Theatre Company (pictured here performing The Sorting Office, 2009) feature in the two day arts extravaganza
The event, which takes place at Embrace Arts, Leicester University’s arts centre aims to share learning and present the huge and rich range of learning disability arts work, connecting performers, producers and promoters.
A scoping document for the event, Written by Andy Reeves, artistic director of the Leicester-based Speakeasy Theatre Company (I featured the participatory arts company’s great work here) describes the East Midlands as “an interesting region in terms of performing arts and disability” because activity from the sector has learning disability, rather than physical disability, as its primary focus.
Anna Pearce and Hanna Sampson in Shadowed Voices, part of StopGAP Dance Company’s trainee programme
As Reeves acknowledges in his scoping report, while there is “a wealth of interesting learning disability practice happening nationally and regionally”, connecting up this kind of work “is much trickier”. Tomorrow’s unprecedented event will, buoyed by the strong vision of the companies and artists in the region, kickstart a learning disability performing arts network in the region.
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.
Whenever I arrived to read with patients at the psychiatric hospital, David was always alone. I approached him a few times but the weeks went by and he seemed unreachable, saying nothing and making no eye contact. One evening, I came on to the ward to find him lying on a sofa with the lights off, his hood up and his earphones in. All the barriers were up. I handed him a poem and, to my amazement, he took his earphones out, his hood down and said: “Can you turn on the light?”
The poem I gave to David was Release, by R.S. Gwynn. It goes:
Slow for the sake of flowers as they turn
Toward sunlight, graceful as a line of sail
Coming into the wind. Slow for the mill-
Wheel’s heft and plummet, for the chug and churn
Of water as it gathers, for the frail
Half-life of spraylets as they toss and spill.
For all that lags and eases, all that shows
The winding-downward and diminished scale
Of days declining to a twilit chill,
Breathe quietly, release into repose:
Be still.
I think the poem’s stillness broke David’s silence. After that, he joined the reading group on his ward, where we enjoyed short stories, such as Saki’s The Lumber Room and Doris Lessing’s Through the Tunnel; extracts from novels including Jane Eyre and The Old Man and the Sea and poems old and new. We read Release with the group and David said he loved the last two lines, especially. He said: “Poems can move you even though you’re sat still. Probably you actually have to be still like it says there. It’s different from feeling manic.”
Weekly Get Into Reading groups bring people together to read aloud. Pic: The Reader project
David has instructed me to always approach him: “Come and knock on my door, even when I’m in the dark and I’ve got my back to you.” This is the essence of why the reading project exists: to knock on doors, bringing light and lightness through reading.
David’s group is one of about 280 Get Into Reading (GIR) groups across the UK. GIR brings people together through weekly read aloud groups, where people can choose to read and are invited to give personal responses. We have groups in locations such as care homes, libraries, prisons, mental health drop-in centres, community centres, schools, hostels, refugee centres and workplaces. Sessions are an opportunity for people of all ages, backgrounds and abilities to engage with reading for pleasure. The work aims to bring about, what we call, a Reading Revolution. This means we want to make literature available to those most in need in our society, as a way of fostering individual wellbeing and social cohesion.
Reading as part of a group can bring mental health benefits. Pic: The Reader project
I work specifically within mental health settings so my groups are in a variety of health-care environments: older people’s care homes; psychiatric units; secure hospitals and addictions services. This type of work is an innovation. The medical director of Mersey Care NHS Trust has said that “Get Into Reading is one of the biggest developments in mental health practice in the last 10 years.” We believe our model is a pioneering way of using creative partnership to deliver meaningful activity to patients. Reading should not be merely an additional intervention; I would identify it as an integral part of the care provision for mental health patients.
My grandmother was an occupational therapist in the 1960s and 70s, and she remembers reading aloud with some of the people with whom she came into contact. It’s just that we are only now really realising the full extent of the potential that literature has to help people- and that this can amount to the transformation of lives and communities.
We have recently carried out some evaluation so have statistics to substantiate this. 54 reading group attendees, both inpatients and outpatients, filled in a questionnaire. The results showed very encouraging responses to their experience of the reading groups.
There were some overwhelmingly positive results, for example, 94% of people agreed with the statement ‘The reading group has given me a chance to take part in interesting discussions’ – but the results form our research are particularly relevant in the context of mental health. In response to the statement “reading has improved my mood”, 78% agreed, 18% neither agreed nor disagreed and just 4% disagreed. And in reaction to the statement that “in the group I’m able to be myself”, 79% agreed, 19% neither agreed nor disagreed and just 2% disagreed. Our research showed 85% agreed with the comment “I’m more able to relax” while 11% neither agreed nor disagreed and 5% disagreed.
I find my work extremely rewarding, primarily because of qualitative, individualised stories like David’s, but this is verified by a growing evidence base, pointing to cost-effective, lasting benefits for our readers.
* Eleanor McCann is a project worker with Mersey Care Reads, a collaboration between The Reader Organisation and Mersey Care NHS Trust. The organisation was a runner-up in last year’s Guardian Public Service Award. Eleanor’s work involves delivering weekly reading groups in mental health settings across Merseyside. She is also studying for a masters in Reading in Practice, a course combining literature and health science, at the University of Liverpool and is co-editor of The Reader magazine. Eleanor can be contacted at eleanormccann@thereader.org.uk
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.
