Christmas isn’t all it’s cracked up to be. Pic: The Topé Project (see end of article for info)
Hooray, it’s Christmas! Yes, the season to be jolly is upon us once again. But that’s OK because everyone loves Christmas, right? Well, I’m not a fan and I know I won’t be the only one shunning the Christmas cheer, preferring instead to hide away with old Ebenezer Scrooge until the tinsel is put away and a new year begins.
This Christmas will be a difficult time for many people, even more so for those with mental health problems. Our society expects a lot from us at Christmas; shops, TV, advertisements and jolly newsreaders perpetuate the myth that we all have to be happy simply because it’s ‘that time of year’.
Being unwell at Christmas as a result of a mental health problem is rarely spoken about since the expectation is that everyone ought to be enjoying themselves; quaffing wine, eating too much and watching the Eastenders Christmas special. Knowing that people are suicidal or spending Christmas locked up in a psychiatric ward distorts this myth and exposes the reality of what Christmas is like for many of us.
Why aren’t you happy? It’s Christmas!
Telling people to ‘get a grip’ or ‘pull themselves together’ doesn’t help, ever, but especially not at Christmas when people are no doubt already chastising themselves for not being in the Christmas spirit and feeling like they are letting friends/family down. If this was possible there would be no such illness as depression, nor any other mental health problem. Making someone feel guilty over how they’re not feeling helps no one.
Having a mental health problem is a lonely experience and can make you feel like an outsider. It can be difficult to find people who ‘get it’ and are willing to listen, especially at Christmas when most people would rather be thinking about what presents they are going to buy.
It becomes less acceptable for people to speak honestly because we’re all supposed to so happy. People are more likely to keep quiet about how they are feeling at Christmas because of the pressure to be positive and have everything ‘perfect’ for the day itself. This quest for perfection can be dangerous because it is unattainable and doesn’t allow for people to let others know they are struggling.
Between Christmas and the New Year the usual support systems that people rely on aren’t available. Mental health services close during this period and on Christmas Day itself even places like coffee shops are closed. This may seem like a trivial complaint to some but when you rely on little things to help you get through the day – such as being able to go out each day and sit in the local coffee shop – not having the opportunity to do this can make it more difficult to cope with existing mental health problems and the stress of Christmas.
The disruption to regular appointments with a mental health service can make it difficult for people to know where to turn if things get tough over Christmas. Thankfully there are helplines available, such as the Samaritans, which do a fantastic job supporting people over the holidays. Generally people are told to go to A&E if they are struggling with a mental health problem in lieu of other mental health services being closed, but as you can imagine going into that environment when you’re in emotional distress can be inappropriate and frightening.
A great service in Leeds which offers face to face and telephone support for people experiencing a mental health crisis is the Leeds Survivor Led Crisis Service. Set up by people with direct experience of mental ill health they will be open Christmas Day and throughout the holiday season, providing an alternative to A&E and helping prevent hospital admissions with their helpline and crisis house.
It would be great if more of these services were available to people across the country, particularly at Christmas when many have nowhere else to turn.
* Project supports care-leavers at Christmas, writes Saba Salman
“Christmas conjures up thoughts of a big massive dinner, presents, fun… and then I think about so many young people who don’t have that. For me it’s really important that young people, especially the most vulnerable, have a good Christmas.” These are the words of youth worker Shalyce Lawrence, 24, who was in care for 10 years and who, along with several peers, has launched a project to support young care-leavers who are alone at Christmas.
Shalyce and a group of volunteers in their 20s have created the Topé Project, in memory of a 23-year-old care-leaver, Topé, who took his life several years ago. The scheme’s launch event, Christmas in the Crypt, is a Christmas Day celebration in London for 70 care-leavers from across the capital. Organisations supporting the scheme include the charity Crisis and five London councils, and the group has also been gathering donations to fund the drive.
The aim of the scheme is to create an “atmosphere of belonging”, positive memories and to help young people form constructive relationships. Young people in care are not supported by social services after the age of 18, unless they are in education and based on 2011 figures, as the project points out, 44% of 19-year-old care leavers in London were living in independent accommodation.
Shalyce adds: “It doesn’t mean you are going to be affected by suicidal thoughts just because you have been in care, you can be anyone and go through that. Think about how you can support the people around you, so it doesn’t have to happen to you.”
Read more about the project on The Independent website, find out more via email thetopeproject@gmail.com Twitter: @thetopeproject or on Facebook.
Self-harm has always been a taboo subject and in my many years of mental health nursing probably provided more challenges than anything else for me.
It touches at the very core of who we are and how we deal with stress. Our mental strength, or resilience to cope when under pressure, will prevail in many cases but not all.
Back to primary care; self-harm is still very much misunderstood by many, and the wider general public. As a mental health nurse, I confess at times to having felt at a loss myself as to how to respond to repeated self harm behaviours. You question your own approach if the problem remains despite intense nursing intervention.
But given that 10 per cent of 15 to 16 year olds are thought to have self-harmed, usually by cutting themselves, if GPs are offering a lacklustre response to the issue (not referring for counselling or for more specific mental health support), this is woefully inadequate.
I have worked with some excellent professionals. However, I have also seen others who are in a privileged position to help but who try to look the other way. Or dismiss this as attention seeking behaviour.
In a profession known for its primary focus on the treatment of physical diseases, being presented with a self-harming patient provides an emotional litmus test for many GPs. Why do they get this so wrong sometimes?
Although I don’t want to generalize, I believe that some view this behaviour with frustration and a sense of hopelessness. By this I mean some medical professionals might not feel confident of their own training or understanding to be in a position to deal with things effectively.
Some GPs are too dismissive or refer to mental health services in the knowledge that more specialised knowledge will be available to plan appropriate treatment. Or they automatically reach for the prescription pad to prescribe medication without really asking themselves if a psychological approach would be the more helpful first option.
And yet all too often, just a listening ear will help, to allow the person to “offload” within the surgery. This is where the therapeutic relationship between the GP and patient is pivotal to treatment and recovery.
The power of talking openly about concerns face to face cannot be underestimated. A prescription for anti-depressants may be helpful in the long term but we should not rule out even a basic “talking and listening” opportunity as a first option (given GP’s have to stick to set consultation slots, I can see why this might seem an impossible idea – but an approach that encourages people to talk is the right one).
If a person with low self esteem tells the GP they are a “bad person” or “unloved”, the GP can use a simple cognitive behavioural approach of questioning the evidence to support this there and then, of which there is usually very little. And stress to the person that a thought is just a thought, not a fact. Simple but effective initial intervention to encourage someone to question their own negative thought processes.
So what to do?
Going back to my opening thoughts, while professionally I’ve found self-harming behavior extremely challenging, one thing I’ve never doubted is my empathy to try to look beyond the physical act of self harm to try to identify its underlining cause.
A behaviour as challenging as self-harm can distract you from seeing the person behind the behavior; what is the emotional conflict driving this kind of behaviour. People can change self-harming behaviours. Being positive and maintaining hope is the starting point of any intervention – and that goes for the professional as well as the individual.
Carved stone hands reading braille, on the exterior of the former Royal School for the Indigent Blind, Hardman Street, Liverpool. The Grade II listed school was built in 1850 (pic: English Heritage)A gap in a church wall speaks volumes about the history of disability in England; lepers’ squints allowed people with leprosy to see the pulpit and hear the service through a small chink in the stonework, without coming into contact with the congregation.
Images of churches with lepers’ squints are among hundreds included in a web-based project launched today by English Heritage. The Disability in Time and Place resource encourages the public to understand changing social attitudes to disability via England’s architecture and shows the influence of disability on the built environment.
As Rosie Sherrington, policy adviser at English Heritage says of Disability in Time and Place: “In essence we can track disabled in and out of the community and back in again by looking at the range of buildings they inhabited.”
The image-led project features institutions and landmarks, among them the Le Court Leonard Cheshire Home, often taken as the first meeting place of the disability rights movement where Paul Hunt began campaigning with other residents in care. The pictures are from English Heritage’s archive and also draw on historical images lent by the charity’s partner organisations.
Disability in Time and Place is being launched at the Graeae Theatre, Hackney (among the country’s leading fully accessible theatres) this afternoon with speakers including Tara Flood, ex-paralympian and director of ALLFIE (the Alliance for Inclusive Education), and architect and access expert Dr David Bonnett, whose pioneering work includes the refurbishment of the Royal Festival Hall.
Guild of the Poor Brave Things, Braggs Lane, Bristol (pic: Brave and Poor Ltd)
Among the places featured is the Guild of Brave Poor Things in Bristol (above), the first meeting places for disabled self-help groups. The visual history also includes the Liverpool School for Indigent Blind, opened in 1791 by Edward Rushton, who was blind. Rushton’s school was the first in Britain that aimed to give people the skills to be more independent.
Other sites featured are churches designed for deaf congregations such as St Bede’s Church in Clapham and St Saviour’s in Acton, both in London (the latter is still used as a deaf church). They have dual pulpits, one for the chaplain and one for the interpreter, as well as bright lighting and raked seating to boost visibility.
English Heritage’s web resource is divided into six sections, each taking a specific historical period – the Tudors or the early 20th century, for example – and looks at the building types associated with it.
Sherrington adds: “In the medieval period we have the idea that disability was a direct consequence of mankind’s sin, and therefore a religious matter. However disability as a result of disease such as leprosy was widespread, and an ordinary part of everyday life. It was not understood in the same way as we see it today.”
Moving onto Tudor times, she says, much of the care provided by monasteries and the church was destroyed during the dissolution, having disastrous consequences on the lives of disabled people. Paradoxically, Henry VIIIs “fools” were people with learning disabilities paid to entertain the court. It was a privileged role and they were thought to have divine wisdom.
“The 18th century saw the idea of disability being a matter of physicality rather than morality,” according to Sherrington, “and providing for the disabled became a matter of civic pride. As such many private asylums and enormous hospitals for the war disabled (like the Chelsea Pensioners) were built.”
With the rise of asylums and workhouses, disabled people were hidden away (although Sherrington adds “ this was though of as a positive move enabling disabled people to receive the ‘treatment’ they needed”). With the 20th century came the attitude that many people had incurable conditions (Sherrington draws our attention to the rise of eugenics “and the perceived need to separate those who were ‘healthy’ from those believed to be ‘inferior’”). But then two World Wars resulted in the notion of “heroic disabled” and the emergence of memorial villages and specialist rehabilitation hospitals.
According to Baroness Andrews, who chairs English Heritage, the project “is a history of the nation’s buildings and of a significant proportion of our population which, until now, has gone unexamined and untold. It is the part of the history of every town and city, with the schools, chapels and hospitals which surround us all each day but it has remained invisible and silent.”
English Heritage worked with a disability history steering group which included disabled employees, disability history academics including Jan Walmsley from the Open University’s Social History of Learning Disability Group and Dr Julie Anderson from the University of Kent who specialises in war disability. Partners included ALLFIE (the Alliance for Inclusive Education). Other sources of advice, information and images include the Greater Manchester Coalition of Disabled People, Disability History Month, the Centre for Disability Studies in Leeds, Leonard Cheshire, the Epilepsy Society, New College Worcester. All the content has been translated into British sign language videos by deaf interpreters.
* English Heritage has also updated its, Easy Access to Historic Buildings, available to download.
A performance by secondary school pupils based on the stories of disabled people from post-war Britain to modern day (photo: Jon Legge/University of Leeds)
“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.”
An image from the Roma and new migrants photo project
The intriguing photographs here are from those in a new exhibition created by children from Roma, Slovak and Polish communities in east London,
The works, created using pinhole photography, have been produced by 12 young people aged eight to 14 from Roma or new migrant backgrounds. The show is part of a Children’s Society project, the Roundabout Arts Project, and the images reflect the children’s views of their heritage and the summer of Olympic sport. The young people from Newham created 20 pinhole photographs and an animated film (below).
An Olympic-related image from the Roundabout Project exhibition
The project, a partnership between the Children’s Society New Londoners Roma/New Migrants Project, art group Click Academy, aims to promote a greater understanding of European migrants and Roma culture, showing the communities’ contribution to London life.
Artist Marta Kotlarska’s Click Academy uses pinhole photography to encourage social change (with the aim of showing it is possible to “make something out of nothing” and at little cost). As Kotlarska has blogged on the Children’s Society website: “Our hopes for the children to learn the realities of the creative process and have the opportunity to express their creativity were realised. Roma children often don’t have access to the arts because of discrimination and social exclusion and we wanted to change this.”
* The Roundabout Arts Project exhibition is open for three weeks at The Hub, 123 Star Lane, London, E16 4PZ, 9am-8pm from Friday 19 October to Thursday 8 November.
Imagine an actor delivering a monologue in the complete opposite of a quiet carriage. Imagine audience members coming and going as they please throughout the show, standing up, sitting down, and making as much noise as they want. Forget bums on seats, this is bums being allowed to wiggle on seats, shuffle, fidget and move. And neither cast nor crew can protest.
It sounds like every actor’s worst nightmare – and every learning disabled theatre-goer’s absolute dream.
The atmosphere in the auditorium will be relaxed to provide “a more supportive environment”, as the NT says of the laissez-faire attitude to audience behavior. The theatre has provided “visual stories” to anyone coming to the performance – essentially support material to help people know what to expect from the visit.
The Curious Incident of the Dog in the Night-Time, Paul Ritter as Ed, Luke Treadway as Christopher Boone (photo: Manuel Harlan)
Crucially, there is to be no change in the content (why should an audience member be patronised or cheated on the drama simply because he or she has a learning disability?) and the play, adapted by Simon Stephens, has not been specifically adapted for the special performance. As the NT puts it, despite the relaxed atmosphere, “this play is most suitable for those who will enjoy a narrative-driven performance”.
Luke Treadway as Christopher Boone and Niamh Cusack as Siobhan (photo: Manuel Harlan)
The theatre already runs audio-described and captioned performances and free touch tours for the visually impaired, but the new venture is the first of its kind for the venue.
Ros Hayes, the NT’s head of access, explains why it’s been launched: “We’ve watched the pioneering work on relaxed performances done by theatres like the Unicorn and West Yorkshire Playhouse with great interest and admiration and are now taking the opportunity to run a pilot relaxed performance. It’s something we’ve been wanting to introduce for some time and Curious spurred us into action.”
Given that a persistent cough or a rustling sweet wrapper is, in most theatres, an eyebrow-raising offence and not a ringing mobile phone could have you ejected faster than you can say “out damned spot”, how is the cast preparing for the distraction that a relaxed performance will inevitably result in? Hayes adds: “We’ve been working with a consultant with experience in this field and she will fully brief the company about what they might expect and how to handle any interruptions (many of the cast visited schools with pupils on an autistic spectrum in preparation for the play).” Crucially, it’s not just actors who are signed up to the idea: “Our box office and front of house teams have also been fully briefed.”
Hayes explains that the video, sound and lighting teams will adjust the effects for the performance – for example, softening and reducing lighting, sound and other special effects. The cast is rehearsing with these adjusted effects and adjusting some of their moves, so they don’t move too closely among the audience for example.
Interestingly, the NT is keen to encourage more performances for adults along these lines. Comparatively speaking, there is much more provision in the theatre and arts sector for children with special needs or disabilities – the Unicorn and special autism-friendly film screenings, to name but two, and I recently came across a learning disability-friendly panto via East Kent Mencap too.
Hayes says: “Curious Incident, although suitable for 13 years upwards, also very much appeals to an adult audience, so we are really keen to see if we can make this work successfully for an older age group. Put simply, we want as many people as possible to be able to enjoy our shows, whatever their needs.”
Encore. Definitely encore.
* The NT’s next relaxed performance, Hansel and Gretel, will be on Saturday 19 January 2013
Meher Salman“Oh really? But she’s so good at dance” was the response of an acquaintance who misheard my explanation that my daughter Raana has fragile X syndrome – she thought I’d said “fragile legs”.
It is European fragile X awareness day next week, Wednesday 10 October, and the aim is to raise the profile of the syndrome in 16 countries across Europe.
Above, Kate Spicer and her brother Tom at a concert in the fragile x film Mission to Lars (photo: Mission to Lars)
I recently went to a screening of the film Mission To Lars, which features a man with the syndrome as its central subject, and I didn’t quite know what to expect.
But in fact all of us who are affected by fragile X can identify with this film in so many ways. The main reason I feel it’s such an important film is that it raises awareness of fragile X in a touching and moving way.
Tom’s obsession with Lars reminded me of my daughter’s obsession with the singer Noel Sullivan which began after she watched Popstars, the 2001 reality TV show that he was featured in. Even now she’ll mention him randomly in conversations, imagining what song he’ll be singing, or incorporate him in doodles, and likes to look up his latest show on the internet.
On the plus side, her obsession gives her something to talk about and do (from printing off photos to flicking through show brochures) and it’s definitely sparked an interest in musical theatre and music. The flip side is that she constantly repeats herself when talking about him (“when are we going to see the show?”) and it’s totally removed from reality.
The scenes in the film which show Tom hesitating to meet the drummer he hero-worships reminded me of the time when Raana went to see her own idol in a West End show but then got cold feet and refused to go backstage to meet him. I was left standing opposite him – he’d very kindly come out to say hello to her – holding a mug she’d made for him in a pottery class while Raana ran to the other end of the pavement, waving shyly.
Another striking similarity was when Tom relaxes when, during the filming, he “helps” with sound recording. Raana also feels more comfortable when she has something to do, like helping with cooking when the whole family’s together. She likes to have a role rather than feel like a spare part.
The relationship between the three siblings (the love and support Kate and Will give their brother Tom was very touching) reminded me of the relationship between Raana and her two older sisters.
What moved me most was Tom’s bravery and how he overcame his anxiety. Routine is very important to people with fragile X and for him to leave his familiar surroundings and travel hundreds of miles on this adventure was admirable.
If you see the film, it’ll give you a better understanding of fragile X and of how it affects not only the individual, but the family dynamics and siblings. For people who have a FX member of family, it makes you feel are if you’re not alone. Watching some of Tom’s reactions, I couldn’t help but think “I’ve been there”.
Although I saw Mission to Lars before the Paralympics, the summer’s sporting events did make me hope that more people would be more aware of disability and learning disability issues, and people’s attitudes should change for the long-term. Films like Mission to Lars will help bring about this change.
July 1984, a Sussex school swimming gala; my 12-year-old self is poised above the sunlight-dappled pool, ready to slice through and glide under the surface like an elegant water nymph.
Sneaking a glance at my competitors, I’m surprised to see them positioned to dive rather than bottom-shuffle off the edge (my trademark style). I can’t really dive. Ah well, arms aloft, knees bent – how hard can it be?
Whistle goes and I spring like a bird through the air..and hit the water horizontally – a plank of wood thudding onto a sheet of thin ice. The impact sends globlets of water over the spectators and shots of pain into my middle. Struggling to regain composure I lumber through the water, more walrus than swan, before finishing 10th. Out of 10.
For the first time in 28 years since that belly flop, I’m bracing myself for a competitive swim.
Water good cause: we're swimming for learning disability charity Netbuddy
My friends and I (collectively known as the Merladies) are taking to the water in October, leaving the keyboard and going overboard, making a splash to raise some cash (donate and we’ll stop the crap puns) in aid of a very good cause, a Dares challenge for the learning disability charity Netbuddy
As the sibling of a (very fabulous) sister with a learning disability, the kind of support Netbuddy offers would have been invaluable when we were growing up.
Our aim is to zip through as many lengths as possible in half an hour and improve that total every week this month.
Merladies? Because we’re too mature to be mermaids. Swimming? Apart from the chance to redeem myself, my recent jaw op means my surgeon’s banned me from anything more hardcore than flailing about in a pool. Otherwise we’d be halfway up Everest. Obviously.
We began our splash for cash this week..here’s how it went:
Week one of the big lather household (anyone got a decent water-related Big Brother pun please?) and my fellow fundraiser Dr Ruth Evans, aka Evans the Eel, joins me at the water’s edge.
Eel bemoans the fact she was always in the ‘bottom swimming group’ at school (bottom stroke – new Olympic sport, sounds kinda fun!) but hopes to rise like a phoenix from the flumes, er flames, with the Netbuddy challenge.
I, meanwhile, am looking forward to what will be the most exercise I’ve done in the fortnight since my jaw op (apart from flexing a bicep to mash chocolate cake into easily digestible clumps).
And we’re off! Eel does indeed power through the water and – ah the indignity – swaps from my slow lane into the fast one.
30 minutes later, we’ve totted up 1500m – China’s Sun Yang set a new world record at London 2012, taking 14 minutes to do the same distance so really, by my, um, scientific reckoning, we’re halfway to matching Olympic record! Huzza!
* See our fundraising page for more info and how to donate to our charity challenge, any amount, no matter how small, would be very much appreciated.
Mason Milne takes part in schemes that boost his social skills and confidence (pic: Dimensions)
Making eye contact is difficult for Mason Milne, who has autism, and making friends is even harder. Yet the 11-year-old has met both challenges while at a special needs holiday club near his home in Colchester, Essex, over the last year.
“He’s come out of himself,” says his mother, Mandy. “He’s made a friend at his club and we’ve noticed how he will come up and speak a little more.” Mandy, 47, and husband, Gordon, 48, meanwhile, get some respite from caring, reassured that Mason is enjoying activities like swimming or roller skating.
Read more about how the Buddies programme for youngsters with learning disabilities and autism goes beyond providing respite care on the Guardian website.
Singer and rapper Dean Rodney, part of the Games Through Our Eyes websiteThere’s no shortage of media coverage of the Olympics and Paralympics, but one new online platform offers a unique and important perspective on the games.
Games Through Our Eyes is an accessible website for the 2012 Paralympic Games created by young reporters with learning disabilities. The team is supported by arts group Heart n’ Soul and social enterprise communications agency Poached Creative.
Games Through Our Eyes is covering wheelchair rugby, the three Paralympic sports open to people with learning disabilities (swimming, athletics and table tennis) as well as the Cultural Olympiad. This year is first time in 12 years that people with learning disabilities have been allowed to compete after Spain’s basketball team faked their disabilities in the 2000 Sydney games.
The reporting team includes Dean Rodney, a 22-year-old singer and rapper with autism whose audio-visual project, the Dean Rodney Singers, is part of the Cultural Olympiad. Dean, who has honed his performing talents through Heart n’Soul and who I’ve blogged about before, is part of the Unlimited showcase at London’s Southbank Centre starting today. Unlimited is staging cultural events alongside the Paralympic Games, having made major new commissions in disability, arts, culture and sport (for artist Rachel Gadsen’s contribution to the Cultural Olympiad, for example, see this previous post).
As far as the new website goes, Lilly Cook, one member of the reporting team, says the aim is for everyone with disabilities and learning disabilities “to be able to find out about them and all the other amazing things going on around them.” As Lilly adds in a recent blogpost: “Paralympic sports are just as exciting, professional and emotional as the Olympics.”
Alongside Lilly and Dean, the other reporters are Nicola Holley, Poppy Collie, Shalim Ali, and Laura Jarvis.
Expect some good coverage of Dean’s installation; the Dean Rodney Singers is an international digital collaboration of 72 musicians and dancers with and without disabilities from countries including Japan, China, South Africa, Germany, Brazil, Croatia and the UK. Their online interaction results in new music, dance and video and 23 of their pieces will be launched at the Southbank Centre today, with audience participation promised through interactive technology (the idea is viewers and listeners engage with the performers).
As well as the Dean Rodney Singers, other Heart n Soul artists perform in events during the Paralympics – the fabulous Lizzie Emeh at the Trafalgar Square Live Site this Sunday – fresh from accompanying Beverly Knight at the Paralympics opening ceremony – and The Fish Police (which Dean Rodney also fronts) at the Potters Field Live Site on Monday. The arts group’s spectacular multi-media club night The Beautiful Octopus Club (created by and for people with learning disabilities) is on Friday 7th September at Southbank Centre, the final weekend of Southbank’s Paralympic Games celebrations.
Keep up with the news on Twitter by following the Games Through Our Eyes team at @ourparagames
