If only more people had the chance to develop in confidence like Laura Minett.
Laura, who I interviewed for a Guardian social care piece today, works as an expert by experience. Her part-time role through the charity which supports her, Choice Support, means monitoring and inspecting social care services on behalf of social care watchdog the Care Quality Commission. The self-assurance she has developed thanks to the job means that when I misspelt her surname during our interview, she politely – but firmly – asked for my pen so that she could write it out for me herself.
Laura, who has a learning disability, told me she is driven by helping improve support for people who may be less independent than her. As she says in today’s piece in the Guardian: “I like getting out and about meeting people and thinking ‘maybe that’s good maybe that’s bad’. I like having a job and talking to the service users – it’s about their quality of life.”
The views of people who use social and health care services are so often not taken into account, something which a major inquiry into health treatment of people with learning disabilities found this week. Involving people who use services in improving the health and social care sector is vital, but so often consultation is nothing more than lip service.
Not so with the experts programme it seems. Another expert I met, Laura Broughton, stressed that paid work and the recognition that her opinion is valuable has made a huge difference to her life. Both the experts explained they have spotted things that could be improved in residential care (simple things, even, like offering people a better choice of food and drink) and told me that individuals in care tell them their concerns or wishes much more freely than they would a professional or full-time inspector without their personal experience.
She has been an expert for just two years, but already speaks in public and to social care professionals about her role. She walked into our meeting relaxed and confident. “I was quite different before doing this,” Laura told me. “I’d never had job before, certainly not in offices, I was more shy. Now I’ve done the experts work, Choice Support is getting me involved in slightly different things as well. I’m training [Choice Support staff and CQC inspectors] and have done presentations and workshops. It’s exciting…I’m travelling quite a lot and getting to know the country.”
Here is some more from the two experts in their own words, which both women previously shared on the CQC and Choice Support websites.
Laura Minett: “If someone said, “What is an expert by experience?” I would answer that I am a person who has a disability and who has first hand experience of using services provided by both health providers and social care providers. I use my experience to talk to others to find out what they think about the care they are getting and if it is good enough for each individual using the service.
I work with different inspectors and have already visited lots of different services like hospitals, a residential college, care homes, assessment and treatment units and secure units. I have recently been part of inspection teams involved in the National Review of Learning Disability services.
My main job is to find out about people’s experiences of the care they receive. The inspector tells me which of the 16 outcomes I need to prepare questions on to ask on the inspection. We arrange a meeting time for the day and go to the service unannounced. This means the provider doesn’t know we are coming. I use my experience to find out what they think about the care they are getting and if it is good enough for each individual using the service.”
Laura Broughton: “Being part of this review was a good experience for me. It gave me the experience of what it is really like for other people who have a learning disability. What happened at Winterbourne View was terrible and should have never happened.
Working as part of a team with inspectors was exciting. The work was exciting but difficult too. Sometimes some of the places I visited were not pleasing , they were challenging.
Some of the people I met should have more help in getting a better life. They were often bored and distressed and staff talked to them not as adults but as though they were children. Some of the people weren’t treated as individuals and certainly not in a person centred way. I felt some people didn’t get the opportunities they should have because they couldn’t speak or because others felt their behaviour was challenging.
It was good for me because I’m now a lot more confident, I’ve got a paid job as an Expert by Experience. Having a paid job is new for me as it is with a lot of people who have a learning difficulty. I have a voice and I was able to help other people living in these services to have a voice.
I hope things will change. All people who have a learning disability have the right to good safe services, choices and a good life.”
When I first met Linda, she told me: “When I was growing up I couldn’t imagine being anything”.
I met Linda when I was delivering a training course aimed at former substance misusers who wanted to become “recovery champions” and better support their peers engage in that service.
Although Linda didn’t speak with any great volume, there was something so utterly powerful and authentic in her statement that for a second the room stopped and focussed upon her. It was not a statement of self-pity, or an attempt to claim the title of the bleakest life experience; it was simply a statement of fact – here was a 48-year-old woman who had never thought she would “be” anything.
I would later learn that Linda had “been” sexually abused from an early age by a string of boyfriends that her mother, working as a street sex worker, had brought into the home. She herself had “been” a street sex worker for most of her life. She had “been” trapped in misuse of heroin and crack on and off for the last 25 years. She had “been” the mother of a small child who died due to swallowing Linda’s methadone prescription.
At some point during the day, we were discussing recovery capital and specifically, the idea of people holding different levels of cultural capital. Many participants talked about how when they were young what they had imagined their lives might be – and the kinds of things that had got in the way of these ordinary dreams. I recall that none of the participants had held any particularly grand or unrealistic hopes, just the usual – jobs, children, and a place to call home.
I guess the power of Linda’s statement was that although she had been many things she had never imagined what she might be.
I am proud to work as part of Addaction’s London training team. It’s a small team of three full time workers and one part time volunteer. The major part of our job is delivering something called the Next Project.
This is a 12-week training course providing the necessary skills and training to people who have been affected by substance misuse and, since August 2010, carers or those affected by the substance misuse of someone close to them.
Some might call it a back to employment scheme that really works (imagine that!), which is fine, except quite a lot of the people who do the course have never even officially had a job. We call it a personal development course that supports the participants to make the kind of changes needed to move their lives forward so they can enjoy the kind of lives that meets their human potential.
Rather than work from the assumption that our trainees are “addicts” or “victims” or “burdened with care” – we work from the belief that our trainees are smart enough to be interested in examining their own behavioural patterns. It is, if you like, a psychology course based upon study of self and the personal changes made possible with this knowledge.
We know this works because since 2005 when the Project started to April 2012, 338 people have attended it and 261 have completed it, a success rate of 77%. This has increased to 87% in the last four years as the project has evolved. 9 out of 10 people finishing Next in the last four years have completed qualifications and gone on to further education/training and volunteering. 31% of those that have finished since 2008 are now in full-time employment. This figure increases steadily over time as Next graduates gain experience and confidence from volunteering and further study that enables them to start applying for jobs
The course is purposefully demanding and intense – giving the participants a real sense of achievement when they complete the course. Next is a proven success story, and is heavily oversubscribed, with waiting lists of up to six months. Referral is from the London boroughs (Islington, Greenwich, Wandsworth and Southwalk funding through Terra Firma) that currently fund places, and a place isn’t cheap at £2,500 but the impact of successful completion reaches much further than the individual (Addaction estimates that each person dependent on illegal drugs costs the country around £44,000 a year, compared to £2,500 for each trainee, for a nine month period). In fact the benefits will extend as far as their children, families and the wider community.
Linda secured funding to do the Project. She completed the course. She did not miss one single session. I don’t think she missed a single minute.
We watched Linda transform – her physical presence, body language, voice projection, intellectual reasoning, confidence, self awareness. It was a transformation that Linda initiated within herself, we provided the right kind of knowledge, support, (the occasional) challenge and encouragement. It was as if she understood the importance of the moment. The moment when she finally could see who she deserved to be.
Hooray, it’s Christmas! Yes, the season to be jolly is upon us once again. But that’s OK because everyone loves Christmas, right? Well, I’m not a fan and I know I won’t be the only one shunning the Christmas cheer, preferring instead to hide away with old Ebenezer Scrooge until the tinsel is put away and a new year begins.
This Christmas will be a difficult time for many people, even more so for those with mental health problems. Our society expects a lot from us at Christmas; shops, TV, advertisements and jolly newsreaders perpetuate the myth that we all have to be happy simply because it’s ‘that time of year’.
Being unwell at Christmas as a result of a mental health problem is rarely spoken about since the expectation is that everyone ought to be enjoying themselves; quaffing wine, eating too much and watching the Eastenders Christmas special. Knowing that people are suicidal or spending Christmas locked up in a psychiatric ward distorts this myth and exposes the reality of what Christmas is like for many of us.
Why aren’t you happy? It’s Christmas!
Telling people to ‘get a grip’ or ‘pull themselves together’ doesn’t help, ever, but especially not at Christmas when people are no doubt already chastising themselves for not being in the Christmas spirit and feeling like they are letting friends/family down. If this was possible there would be no such illness as depression, nor any other mental health problem. Making someone feel guilty over how they’re not feeling helps no one.
Having a mental health problem is a lonely experience and can make you feel like an outsider. It can be difficult to find people who ‘get it’ and are willing to listen, especially at Christmas when most people would rather be thinking about what presents they are going to buy.
It becomes less acceptable for people to speak honestly because we’re all supposed to so happy. People are more likely to keep quiet about how they are feeling at Christmas because of the pressure to be positive and have everything ‘perfect’ for the day itself. This quest for perfection can be dangerous because it is unattainable and doesn’t allow for people to let others know they are struggling.
Between Christmas and the New Year the usual support systems that people rely on aren’t available. Mental health services close during this period and on Christmas Day itself even places like coffee shops are closed. This may seem like a trivial complaint to some but when you rely on little things to help you get through the day – such as being able to go out each day and sit in the local coffee shop – not having the opportunity to do this can make it more difficult to cope with existing mental health problems and the stress of Christmas.
The disruption to regular appointments with a mental health service can make it difficult for people to know where to turn if things get tough over Christmas. Thankfully there are helplines available, such as the Samaritans, which do a fantastic job supporting people over the holidays. Generally people are told to go to A&E if they are struggling with a mental health problem in lieu of other mental health services being closed, but as you can imagine going into that environment when you’re in emotional distress can be inappropriate and frightening.
A great service in Leeds which offers face to face and telephone support for people experiencing a mental health crisis is the Leeds Survivor Led Crisis Service. Set up by people with direct experience of mental ill health they will be open Christmas Day and throughout the holiday season, providing an alternative to A&E and helping prevent hospital admissions with their helpline and crisis house.
It would be great if more of these services were available to people across the country, particularly at Christmas when many have nowhere else to turn.
* Project supports care-leavers at Christmas, writes Saba Salman
“Christmas conjures up thoughts of a big massive dinner, presents, fun… and then I think about so many young people who don’t have that. For me it’s really important that young people, especially the most vulnerable, have a good Christmas.” These are the words of youth worker Shalyce Lawrence, 24, who was in care for 10 years and who, along with several peers, has launched a project to support young care-leavers who are alone at Christmas.
Shalyce and a group of volunteers in their 20s have created the Topé Project, in memory of a 23-year-old care-leaver, Topé, who took his life several years ago. The scheme’s launch event, Christmas in the Crypt, is a Christmas Day celebration in London for 70 care-leavers from across the capital. Organisations supporting the scheme include the charity Crisis and five London councils, and the group has also been gathering donations to fund the drive.
The aim of the scheme is to create an “atmosphere of belonging”, positive memories and to help young people form constructive relationships. Young people in care are not supported by social services after the age of 18, unless they are in education and based on 2011 figures, as the project points out, 44% of 19-year-old care leavers in London were living in independent accommodation.
Shalyce adds: “It doesn’t mean you are going to be affected by suicidal thoughts just because you have been in care, you can be anyone and go through that. Think about how you can support the people around you, so it doesn’t have to happen to you.”
Read more about the project on The Independent website, find out more via email email@example.com Twitter: @thetopeproject or on Facebook.
“I quite clearly remember being tied to the cot sides,” recalls Florence, now in her 70s, of the childhood she spent in hospital. “Literally, two wrists tied to the cot sides with cotton tape so as I couldn’t get up and I couldn’t sit up because they – the doctors – had decided that if there’s something wrong with your back, you have to lie prone.”
Florence’s memories are among those featured in a project that encourages schools to create theatrical performances based on real stories of disability from people born in the 1940s, 60s and 80s. The Changing Lives, Changing Times project involved workshops at three Leeds schools over five weeks last summer and led to the development of teaching packs. These help teachers run awareness-raising workshops about disability and are being sent out to UK schools by the end of the year.
The drive coincides with Disability History Month, which starts today.
The rest of my piece in the Guardian’s social care pages is here, and I’m devoting the remainder of this post to extracts from the stories of Florence and Dan, both born in the 1940s, Poppy, born in the 1960s, and Holly, born in the 1980s, reflecting the contrasting experiences of disabled people in different eras.
Florence was born in the late 1940s, the daughter of a single parent, but when doctors diagnosed that she would never walk, her birth mother left her. Florence attended mainstream schools throughout the 1950s. She left school and entered her first paid job in the mid 1960s as a telephonist and clerk. Her second job was as a typist. Florence is a trained social worker. She is single, she has no children, she drives her own car:
“There were all sorts of problems of having a child that wasn’t going to be able to get do things normally. The children’s home really wasn’t ideal and they decided that they would foster me out because there were too many kids running about in the children’s home and because I wasn’t mobile I was getting picked on, getting hit, getting spat at by the other children.
I then went to foster parents who, although they knew that I wasn’t going to be able to walk, said: “Oh yeah, we’ll manage that fine”. And they didn’t, and after two months I was back in the children’s home. The children’s home said “no, we can’t cope with her here because she’s not mobile” so I went back into hospital, where I didn’t really need to be but because there was nowhere else suitable and they couldn’t find another foster placement, so that’s where I went.
My mother still was saying, “I don’t want anything to do with this child’, which was really difficult for her because any time that I needed any surgery or any intervention they had to get hold of her, and every time I needed something obviously it brought it back to her that I wasn’t living with her. So that must have been really difficult for her.
A relative of a child that was in the next bed to me for quite a while came in and after a couple of times coming in she realised that there wasn’t anybody visiting me, because nobody from the children’s home came, my mother didn’t come, so nobody came. So she said; “Well could I still continue to visit after my niece goes home?”. And they [hospital staff] said: “Yeah if you want to”. You know: Why would you want to do this? And she said: “I just seem to have got on with her and she’s got a really nice smile”. And so after a couple of visits she’d sort of said to the nursing staff “Is there anything else I can do?” And the nursing staff had obviously said, “Well, you know, it’d be nice if you maybe spoke to the social worker”, and so they set up an appointment with the social worker – and I ended up going out to them. Initially short-term fostering and then it turned out as adoption eventually. So that was really just luck and chance.
I had absolutely no idea where I was going because there was no proprietary work done – no photograph of the house, nothing. They didn’t do things like that then, they just assumed that a child would cope with it, you know. So we ended up at this house and there were like two steps at the front door. Although they knew I couldn’t walk it just didn’t register. I suppose because they felt I could stand up, I could walk, and the two are not at all related, but to people that have not known disability … why would you think about it?
I don’t think my adoptive brother was really consulted that much about it and I think he just took the attitude, “well, I’m an adult, it’ll not bother me”. And so, because there was such a big gap there really wasn’t a very close bonding at all and there still isn’t, but there is with his children, so that’s okay.
Apparently one day when we were in the town shopping … my adoptive mother saw my other, saw my natural mother coming in the door … … and we turned and walked away. Now I have not even got any memory of what my natural mother looks like. I have nothing.”
Dan, born in the 1940s:
“I can remember, I should imagine possibly 7 or 8, being in and out of hospital and, it was suggested by the medical profession that I should go to a special school, and I always remember it was a real big old type of building and we used to be taken on a… on a blue single decker bus and this school was um, it… it was more about doing this like making raffia baskets and playing with you know, clay and they… they had gardens at the back and used to let us potter about, digging things up or planting things, but it didn’t seem to be you know, really academic type of thing, it was all about… and I always thought I was the least disabled person there to be honest.
You were sort of cotton-woolled, you went in and there was always lots of people to help you, you know go to your classroom, help you if you needed it, sitting down, people brought things to you all the time to your desk or whatever, and um, it was… you knew you was different and you had this all the time, you knew that you were, you was different from anybody else, those outside, your friends at ordinary school, you needed this particular facility because you had a disability, and it was always the physical disability that was sort of, you know, important. That’s why I’m sure you know, it was as though you were limited, your mental capacity was limited.”
Poppy, born in the 1960s, went to residential special school at the age of four until she was 16. The school became her social world and she remembers feeling bored and lonely at home during the summer holidays. Her ability to move around independently was limited by an inaccessible environment. At school there was a strict institutional regime of normalisation including intensive physio and speech therapy (“the more dependent you were, the less privileges you got”) and there was corporal punishment for non-compliance and allegations of sexual abuse from some children: “I knew it wasn’t right, but there was no one to tell”. Poppy also saw changes towards a more enlightened attitude in the late 1970’s and whilst academic expectations for the pupils were not high she was able to gain enough basic qualifications to enrol at a further education college. Here is Poppy’s story:
“My first memory of school was crawling down the corridor after my mum and dad had gone, and I was in tears, because I didn’t really understand what was happening. I never walked, I was on the floor, I always crawled, so I crawled down the corridor. So the headmistress picked me up, shouted at me and put me on my feet. They had bars on the walls, and she said ‘we don’t crawl here, we walk’ and I had to walk and I’ll never forget that. It was pretty traumatic at the time.
The school was very institutionalised, and you got up at 7 every day, including weekends, which I wasn’t too happy about, and they had set meals, you had set bath times, set bed times, the day completely structured. Luckily we did have lessons, they did try to educate you, as much as they though was possible, but I still think we had a substandard education. It wasn’t very tasking.
I remember one child getting hit around the head, and I knew it wasn’t right, but I was too scared to tell anyone.
A new headmistress came, and she had very new ideas about disabled children, and I think she had higher expectations of us, and she taught us about classical music, how to appreciate the arts, I think we responded to that quite well. We would go to the theatre or we would go on days out to the Tate Gallery.
The aim was to get us as independent as possible, but not independent to use a wheelchair to get about; you must walk, you must talk. I had speech therapy, although you couldn’t tell now. I had speech therapy, and , I had physiotherapy, and we had to dress ourselves, we had to feed ourselves, and some people weren’t able to do that; the more dependent you were, the less privileges you got. So because I could get dressed on my own, I could sneak a few minutes in bed longer in the morning, I had more freedom, you know, I could do as much as anyone, I could come and go as I pleased.
I think young people have a lot of pressure today, I think it’s harder, I know one lad, he’s at a non-disabled school and he finds it really hard to kind of be part of the whole system, because he is different, he knows he is different and in some ways, his school mates treat him differently and he hates that. I didn’t get that at school, we were all the same.
College was like a right of passage. It was where I learnt to become who I am now. The way I learnt to become, I think, an independent adult, not in the sense of learning to walk, dress and all that stuff but to think for myself, to have the choices that I wanted, and to be able to make those choices. Also it made the selection process more powerful because you knew you’d been selected because of your intelligence, and not someone patting you on the head.
I majored in English and my minor was in Sociology and we studied ethnicity, racism, and sexism, and different kinds of religions and beliefs, and age discrimination and class, nothing about disability, so at that point I wasn’t even aware I had a political identity as a disabled person.”
Holly was born, several months prematurely, in the 1980s. She was not expected to live for more than a few days and doctors advised her parents not to bond with her. Her parents separated after her impairment was diagnosed, so Holly lived with her mother, who gave up her career, and a step-brother from a previous marriage. Her mother re- married. Holly was sent to a residential special school when she was two-years-old, and stayed there until she was 18. When she left school, at the age of 18, Holly also left home, partly because she had become more distant from her parents, and because she had experienced some domestic violence and abuse. She went to a mainstream college to study dance, but never finished due to back problems. Holly lives alone in a council flat. She works as a volunteer for a local disability organization and a charity that supports children who have been abused. Holly has aspirations to do a paid job and marry her boyfriend:
“Some people are completely ignorant, not through malice but they are ignorant when it comes to disability. Somebody’s already formed in their own head what a disability means and if you kind of break their train of thought about what a disability is, you kind of completely shock them.
I think it’s changing very, very slowly but I don’t think it’s changing at the pace that it should be. I think there’s still an awful lot of undertone, tokenism, you know, people still get patronised when they’ve got a disability. I actually find the worst people for it are teenage girls – like girls in between the ages of let’s say fifteen to early twenties. I don’t know whether it’s because you know, I don’t quite understand, but I’ve experienced really quite bad attitudes with that kind of age group.
I still find it absolutely disgusting that women that need to access places like women’s refuges are turned away on the basis of their disability. I think people are still like –what do you mean domestic violence? Well, you’re disabled. Because they either think that you – that you are completely spoilt and wrapped up in cotton wool as a child, and obviously you can’t experience domestic violence from a partner because disabled people don’t have sex. I find the – worst thing a parent can do is pull a child away when they want to know why that lady is in a wheelchair. I wish to god parents would just let their children ask. And then maybe we could start educating from that age.”
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:
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.”
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.
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 firstname.lastname@example.org
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.
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:
Janet Down only realised she was a full-time carer for her disabled husband when she fell ill a few years ago and could not look after him. Suffering back pain from lifting and depression from coping unsupported, her inability to care for 65-year-old Dave exposed just how much she did for him. This prompted her to recognise her role, accept she needed help and find leaflets about caring at her library.
Carer aware, an innovative project that Down subsequently participated in and designed by Dudley borough council, is making it easier for carers like Down to get support. The online mini-training toolkit offers an explanation of carers’ rights, better access to support and reassurance that professionals are recognising carers’ issues. Down now champions the scheme as chair of Dudley Carers Forum. “Knowing how and what the carer is entitled to receive is empowering,” she says. Read the full piece here on the Guardian Social Care Network.
Over 30 years ago as a young man I first set foot in a psychiatric hospital. It was an old Victorian “asylum” in the rolling countryside of Bedfordshire. I had travelled to the south of England from my native north east to find work, and here I found myself.
I wandered down the endless dimly lit corridors and found myself surrounded by staring, pain-etched faces with wild curious eyes. It felt like I had stumbled onto the set of the film One Flew Over the Cuckoos Nest. There was a sense of unreality to it all, but also of mystique. It was so stereotypical of all I had previously read in books and seen on television about asylums – those places others and never ourselves, of course, will be sent to for being “mad”.
Next year, it will be 50 years since the first steps towards community care for mental health (see this useful mental health timeline on the Mind website) this “anniversary” has made me revisit my early experiences as a mental health care professional and look afresh at the history of mental health care.
After 1962’s Hospital plan for England and Wales, large psychiatric hospitals closed and local authorities developed community services. That was, of course, the theory – not all local areas had adequate community services as we know, so there were still long-stay patients in hospitals up and down the country.
So it was more than three decades ago in that psychiatric hospital that my understanding and awareness of mental illness grew. I came to realise that the staring faces and wild eyes were ordinary people who had found themselves in extraordinary circumstances. They had been incarcerated many years before.
As a consequence of the debilitating illnesses they had, such as schizophrenia, and the horrendous medication side effects, they were displaying mannerisms that drew unwanted attention. Mannerisms that perpetuated the stigmatising process further. They had lost their self confidence, their motivation, and probably more importantly their daily living skills to function independently outside of the hospital confines. They had become institutionalised. The hospital was their home and they would eventually die there. Within the walls of the hospital the behaviour became normalised, the wandering up and down corridors, the staring at strangers and the shuffling gait. Outside in the local town it was polarised.
In the early 1990s many of the old asylums were closed. They had become anachronistic. More people were now being rehabilitated with the government’s proposal for care in the community, a radical shift in policy and approach essentially moving most of the care emphasis from the hospitals into the communities. People were discharged from the hospitals back into their communities with follow up planned support and care (in most cases).
Sadly some slipped through the safety net of care. And in the years that followed the medication improved and the stigmatising side effects became less. There was an increased acknowledgement of the importance of social inclusion, of recovery from illness, and of empowerment – treating people as individuals with informed choice and promoting equality.
Flashforward to 2011 and yet we still have stigma. We still have misunderstanding and we still have inequality in many sections of society for those 1 in 4 of the population who experience mental illhealth.
What is my long term vision of stigma and discrimination and where we will be in the next 50 years? I believe that stigma will have been eradicated completely following the success of campaigns such as Time To Change. I hope for a realisation that both our physical and mental wellbeing work in correlation and, as such, cannot and must not be split. I believe the strength and vision of those who have fought so hard will be acknowledged one day and in schools across the country their stories will be lesson material. Leading figures in the anti-stigma movement will be seen more positively as vehicles for social change. Mental health stigma will be seen in the same unacceptable light as racism and homophobia.
I have campaigned for many years, most of my adult life even, and no doubt ruffled a few feathers in the process. But I would rather stand up and be counted for saying something I passionately believe in than silently watch and do nothing. This I cannot do alone and I am always motivated by the support I get from others, more so from the victims of stigma and discrimination themselves.
As Philip Larkin wrote in The Mower, “We should be kind while there is still time”. In the case of mental health and tackling stigma and discrimination this kindness will hopefully continue through campaigning. We have come a long way, but we are not there yet.
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.
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: email@example.com