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.”
Huge lashes sweeping over her eyelids, face framed by diamante and skin shining gold, this is a photographic portrayal of how Samona Naomi Williams feels some days: valuable, not a burden to society.
Yet Samona, a wheelchair user who Ehlers-Danlos syndrome (EDS) type 3 which, amongst other things, affects her mobility, also has days where she feels trapped by her condition, vulnerable and delicate. Outwardly, on some days, she may show little sign of her disability. This is reflected in a portrait where she is bound to her chair with tape emblazoned with the word ‘fragile’.
Then there are times, she recalls, referring to a shot of her on a mattress strewn with medication, that her bed is a “marshmallow prison”: “There is no rest for me here. Yet I’m tied to it. I’m bound to it. There’s nothing sexy about being bed bound, though I wish to see it differently.”
Samona has turned her experience of disability into an art project, Bound, documenting her story with photographer friend Anthony David King. The pair recently exhibited the works at the Brick Gallery in east London and the pieces are available to view online at Saatchi with an exhibition tour of London planned for later this year.
Until her diagnosis in 2009, Samona was a TV, music video and film producer, producing and directing a short film screened at Cannes. With her condition, she felt she had “nothing to give”: “I was just this ‘disabled person’. I cannot write, I cannot do my films, I cannot work – that’s when Anthony and I sat down and had a discussion about what can I do to use to use my skills and illness. We came up with photographic project which we could make work around my disability.”
Anthony, who met Samona as a student, adds: “When she became ill, the impact on me as a friend, seeing her go through this…I could see she felt she didn’t have much to offer. We decided to do something together, an opportunity to do something not just for her but to tell her story that may be encouraging to others, looking at ways we could express her experiences.”
Samona’s condition means that everyday tasks – taking a shower or making a cup of tea – can be difficult. She uses a wheelchair when she goes out due to weakness, dizziness, a heart condition and pain when she walks. She often suffers fortnight long “crashes” where she remains in bed, exhausted and in pain. She describes these episodes as “being crushed by bricks”.
Yet the images are bold and provocative – Bed and Gold, for example, portray an attractive woman. Samona adds: “I may be sitting there [in bed or in the wheelchair], but in my head, I’m imagining something else, a feeling of fantasty. I was keen to get away from any stereotypical views that are out there; this is something that we don’t talk about – I’m still a woman…I know lot of people living with illness and we can infiltrate popular culture and can present beautiful images.
“Disability in the media is about benefit culture, it’s a negative thing, and also a lot of the time I feel people [without disabilities] cannot relate to disabled people, they have one of two reactions – they look away or they overcompensate. But we are just normal people who have an illness – it does not change you as person. I can’t get up every morning and do my hair but it doesn’t take away the desire to be who I am and who I was before. We all suffer from some kind of weakness and vulnerability; some wear it on the outside and some on the inside.”
The project, says Samona, also stemmed from a desire to draw attention to the lack of support for disabled people and how the current welfare reforms are a threat to vulnerable people.
Samona, who has home care, adds: “It is important, especially after the Paralympics, to keep attention on disability – not say ‘well, the Paralympics was a positive thing, and now let’s move on’…we are not miserable people who don’t want to work and who are in chairs and who are a burden on society.” She worries about the government cuts. “Of course they pick on the most vulnerable members of society, most disabled people are suffering.. it’s difficult to get out of bed some days, let alone write a letter to make a complaint. They kick you while you’re down.”
The artists stress that their exhibition portrays the the challenging side of Samona’s experience, but has a positive message. “The full set of images we shot try to keep a balance of reality – so the truth is that there are great moments and we tried to show that in images like Gold, Samona still has something to offer, still a valuable person,” says Anthony.
Samona explains the story behind the shots above: Gold:
“When I realised that I wasn’t going to recover easily, quickly or perhaps not at all from this illness, I didn’t know what to do. I had so many dreams and goals and suddenly it felt as if I would no longer be an asset to this world. I was going to be a burden. A burden to my family, a burden to society, incapable of contributing anything to anyone. I sat and contemplated this new existence, I felt completely worthless and couldn’t really see the point of carrying on, I may as well end it, I thought. However the caterpillar struggles through its cocoon before it can become a butterfly and a rock undergoes immense pressure before it becomes a diamond. I slowly began to see this illness as less of a torment and more of a metamorphosis, a struggle into something greater than I was before. I saw my worth in a different way. I could still contribute to my family and I still have so much to give to society. How? By allowing myself to be me regardless of this illness and realising that rather than being worthless, I am worth more than ever before. I am valuable. I can still shine and I will still go on.”
“I sometimes wish I were wearing this fragile warning tape when I go out in the wheelchair so that people would heed the signage and treat me delicately. Being in a wheelchair means you are exposed and on show and people often have reactions, judgments and lack consideration. They may see you as an inconvenience or worst still behave like they don’t see you in a clumsy and nervous fashion. In my case, people behave confused ‘what exactly is wrong with her’. I see their questioning and it feels almost accusing sometimes, ‘You’re not really disabled.’ ‘You don’t look ill’. Imagine how that makes me feel. The physical pain is enough but this is coupled with emotional pain whenever I go out. I feel the need to explain, ‘Hey, I might look ok but I’m suffering every day’. I am broken physically and mentally and I wish people would understand. It would be easier if I could just wear the tape.”
“I have found a new relationship with my bed. It’s like a marshmallow prison, necessary, uncomfortable, restricting and binding. It’s where I spend most of my time, in complete agony and pain. I feel restless, unable to sleep and too weak to stay awake. It’s a mind- numbing, agonizing, maddening experience being unable to move from the bed. Despite its billows of softness, feathered stage and relaxing countenance, it is not the pleasure pen that I wish it could be. There is no rest for me here. Yet I’m tied to it. I’m bound to it. There’s nothing sexy about being bed bound, though I wish to see it differently.”
“Decision-makers are cheaters, they suck..they don’t give a sh*t about us disabled”
“I don’t want to live in a group home, I don’t want to live in an institution”
“They make promises in Parliament and break them every day”
Not the words from a campaign against welfare cuts or disability rights, but lyrics from a Finnish punk band whose learning disabled members star in a new film and are about to embark on a UK tour.
The Punk Syndrome, already being shown in selected cinemas and out on DVD next month, is a documentary about the band Pertti Kurikka’s Name Day (see the trailer with subtitles at the end of this post).
The documentary by filmmakers Jukka Kärkkäinen and J-P Passi follows the members – Pertti Kurikka on guitar, Kari Aalto, vocals, Sami Helle on bass and drummer Toni Välitalo – as they record, fight, find love and gradual fame. Guitarist Pertti, who lends his name to the group, composes the music and writes the lyrics with vocalist Kari. The band members’ learning disabilities include Down’s syndrome and autism.
The film bills itself as painting a “frank, edgy and funny portrait of the individual band members” and you can believe the hype; this is one film that does what it says on the tin.
It is warm, refreshingly raw, poignant and laugh-out-loud funny. Watch out for some awkward issues around personal hygiene, a comically honest complaint from one musician to another that the music he’s writing is, well, a little too difficult to play, and an al fresco gig in a shopping area where the audience, pensioners included, is encouraged to “wave your hands in the air like you don’t give a f..”.
This isn’t a portrait of vulnerable people undergoing music therapy (although, even the band originated through music therapy workshops, does it matter if the end result brings their story and their experiences as adults with learning disabilities to light?) but charts the bust ups and the brotherly respect between the musicians (although there’s more of the former than the latter).
My favourite song? The one about one band member’s trip to the pedicurist, a regular event that inspires an angry song. On one level a darkly comic diatribe against yet another appointment that has to be kept, on another, a spitting rage against a lack of choice and control; being forced to do things you don’t really want to do at times when you don’t really want to do them.
The band was formed in 2009 in a workshop arranged by Lyhty, a non-profit organization that provides housing and education services. The group came together on punk fan Pertti’s name day [the tradition of celebrating the day associated with your given name] the band’s name was born. Pertti won the silver medal in the Nordic countries’ street organ championships in 2008.
As for Pertti’s fellow musicians, Kari is into motorcycles and has a girlfriend who he one days hopes to move in with. He hates group residential living, a sentiment he puts into his lyrics: “I live in a group home in Töölö, but I don’t like it because the area is too quiet. People in Kallio are nicer and there are record stores and bars.” As he says in the film: “Everyone has the right to make a decision about where and how they would like to live.”
Bass player Sami, a volunteer campaigner with the political party he supports, lives in the same group home as Kari. Toni lives with his parents who want him to move into group living, but he wants to stay at home.
Pertti, who describes touring as “terribly lovely” says he has been surprised “to see how many people dig us and say ‘Hey, that band plays damn well.’ We played a gig and they really liked our band.”
If anything, I’d have liked to have known more about their families, a bit more about the process that brought them together, but that would have been a different film. Cinematographer J-P Passi, has said of the documentary: “I hope that our film will show people that these people shouldn’t be though of as defective or inadequate, but rather as individual and complete human beings. I’d like the audience to see them as people who lack certain knowledge and skills but also lack the ability to act destructively against other people.”
To borrow Pertti’s words when he describes his band, this is one “kick-ass” documentary.
* The film is playing in selected venues, see the list of screenings here.
* If Pertti Kurikka’s Name Day and the film are of interest, then check out Stay Up Late, founded by the band Heavy Load. The Brighton charity brings disability arts to the mainstream and advocates for the rights of people to lead the lives they want to. Stay Up Late’s gig buddies scheme, for example, gets people with and without learning disabilities going to gigs together through a love of the same music. You can also check out this link to a documentary about Heavy Load.
Okay, so it isn’t yet December, but can you really look at this this frosty little fellow and fail to feel even a tiny bit festive? He’s just one artistic entry in the charity Netbuddy’s Christmas e-card competition
The charity, which runs an award-winning website and online community for parents, carers and learning disability professionals, invites people to vote via its Facebook site for the design they think should be its e-card for 2012, and the image on Netbuddy’s Facebook site withe most “likes”, wins. All the artwork has been created by children and people with learning disabilities.
The deadline for voting for the seasonal greeting e-card is 10 December and the winning artist will receive a chocolate hamper. Here are some of the other entries – click here to see them all and vote for your favourite:
“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.”
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.
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”.
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
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.
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.
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
A damp squib of a sticking plaster, or what health secretary Andrew Lansley has said is the “most comprehensive overhaul [of social care] since 1948” and an end to the care lottery?
Most early reaction to today’s long awaited care and support white paper and its associated draft bill is firmly on the side of the former view.
I’ve yet to read all the detail, but while there’s a much-needed focus on elderly care, there’s not enough of a recognition for other sections of society needing care and support, and nothing to plug the funding gap.
As Merrick Cockell, chairman of the Local Government Association, told Radio 4’s Today programme this morning: “We haven’t got time to tinker around…We’ve got to look at radical change.” The LGA has said there is a £1.4bn gap this year between the money available and the cost of maintaining social care services. There’s a good run down of the council perspective on the LGC website and while this post from Ermintrude2 was written before the publication of the white paper, it’s a really good explanation of the issues.
While today’s announcement picks up some from the Dilnot report (Dilnot suggested a system for the elderly where the total cost of care would be capped to £35,000 and support to old people should be extended to those with assets of £100,000), any “victory” for common sense and civil society is bittersweet because it fails to lacks the cash to make real far-sighted change a reality. The proposals might well show good will, but there’s no financial way (this communitycare.co.uk piece relates to the vision for social work, which could be undermined by the lack of cash).
It is, as shadow health secretary is quoted in the Guardian’s politics live blog as saying, “a pick and mix approach to the Dilnot package”. So the government hasn’t taken up the “once in a lifetime opportunity” that Dilnot mentioned when he launched his vision of how to fix the social care system.
Among today’s main points are plans for an optional social insurance scheme under which people pay the government premiums to ensure that their costs for care and accommodation are capped, and a “universal deferred payments” system where councils lend money to those needing care, then recover the cash when the house is sold after death. Sound sensible – perhaps even familiar? That’s because it’s already in use – around 9,000 people already used deferred payments.
Today’s government press statement suggests we watch this space: “The government will continue to work with stakeholders to consider in more detail variants under the principles of the Dilnot commission’s model, before coming to a final view in the next spending review.”
Having already waited with bated breath for today’s long overdue white paper and draft bill, it’s unlikely that many will hold it much longer.
Here’s a flavour (by no means a comprehensive round up) of reaction on Twitter and the web to today’s social care white paper:
Richard Humphries, senior fellow at the King’s Fund: “There is a financial vacuum at the heart of these proposals which undermines the bold and ambitious vision for a reformed system set out in the White Paper.”
Julia Unwin, chief executive of the Joseph Rowntree Foundation: “Successive governments have failed to act. Without a sense of urgency more of us face insecurity and uncertainty as we age. The failure to address social care properly will only mean more pressure on the NHS thereby destroying all hopes of a sustainable and functioning health system in the future.”
Clare Pelham, chief executive of disability charity Leonard Cheshire Disability: “It is a question of fundamental decency that disabled and older people should be able to live their lives with dignity in Britain in the 21st century. We hear a great deal about the need to support older people through dignified social care, but it is important that the needs of younger disabled people are not overlooked.”
Mark Goldring, chief executive of Mencap:”The social care system is in crisis. Years of underinvestment and cuts to services have left one in four adults with a learning disability literally stuck in the home, isolated and at risk, with family carers at breaking point and scared about the future…We are reassured to see that the Government has committed to fund immediate reforms, but this promising blue print will never get off the ground if it fails to address the chronic underfunding in social care. The Government cannot delay any longer, and must now outline an urgent plan of how it intends to fund social care reform in the long term.”
Carers UK chief executive Heléna Herklots: “The measures set out in the draft Care and Support Bill would move from piecemeal carers’ rights legislation to the establishment of carers’ rights in government legislation and, for the first time, equalise carers’ rights with disabled people rights…But to make these rights a reality, what carers also need is a social care system with the resources to overcome years of chronic underfunding and rapidly growing demand. Those who face soaring care bills, service cuts and a daily struggle to access even basic support from the social care system, may see new rights in legislation as empty promises without the funding to back them up.”
David Orr, chief executive of the National Housing Federation: “We’re pleased the White Paper recognises that housing is crucial to the integration of health and social care, and welcome the investment to build more supported housing for older people and younger disabled adults…We need a health service that invests in services that keep people out of hospital, not one that simply treats them when they get there….the Department of Health needs to encourage local government and the NHS to pool budgets, focus on housing-based preventative services and set out its full proposals for the funding of social care – for today and for tomorrow.”
Nick Young, chief executive of the British Red Cross: “That the Government is accused of failing to address the social care crisis is no surprise. The scale of the funding problem is enormous and growing. It will take courage, creativity and tremendous degree of political will to solve. That isn’t going to happen overnight.”
@ageuklondon Though it contains some good ideas, the #carewhitepaper doesn’t go far enough. The problem of care will not go away and is getting worse!
@Sensetweets Deafblind people continue to be abandoned, as funding fails to materialise – our response to the #carewhitepaper
@TonyButcher #carewhitepaper – like excitedly looking forward to your birthday but then only getting a cheap pair of Primark socks – disappointing
@gary_rae If this is a “watershed moment” for #ukcare then we’re clearly drowning. #carecantwait #dilnot
@Marc_Bush Care crisis demanded decisive action. Today we got a holding statement…’ @scope rspnd 2 @DHgovuk #carewhitepaper http://tiny.cc/scopetocare
@WoodClaudia focus on deferred payments in #carewhitepaper due to absence of other funding ideas. It is option for some, not THE solution being proposed
@Ermintrude2 Disappointed that headlines about #carewhitepaper all seem to concentrate on selling houses to pay for care. System about so much more.