I launched this blog as a platform for some of the excellent, uplifting, often unsung, good practice in social and public policy.
In contrast, this week I’ve been finding out about some of the worst care possible.
The opposite of “care”, in fact.
A host of very adept, passionate bloggers and campaigners have been demanding not only answers, but action after the death last year of Connor Sparrowhawk. Connor, 18, died while “being cared for” at a Southern Health Trust in-patient unit in Oxfordshire for people with learning disabilities.
As Connor’s mother Sara has said, “He should never have died and the appalling inadequacy of the care he received should not be possible in the NHS.” Sara’s powerful blog includes links to bloggers and commentators whose words are well worth reading.
Much has been written about Connor, and more will be – although clearly we need more action than words alone – but taken together, Sara’s slideshow and these stark words from the independent report published last week tell you much of what you need to know: “the death of [Connor] was preventable”.
* Follow #JusticeforLB on Twitter @JusticeforLB
* Read more on Sara’s blog and sign up for email updates here
“People say to me how great it is that I ‘help’ people with learning disabilities to make their own films but I don’t do this out of charity. Far from it. I do what I do because I am excited by the amazing talents of the people I work with. Filmmakers with learning disabilities have an ability to offer a view of the world that I don’t. I couldn’t even dream of the scripts that our members write.” So says Will Sadler from Beacon Hill Arts in Newcastle, reflecting just one view about “learning disability arts”.
It’s the same sentiment expressed by Richard Phoenix, who runs music organisation Constant Flux, and who I’ve quoted elsewhere on this site : “Often when I talk to people about working with people with learning disabilities in music I encounter the “Aww…. That’s so nice” attitude, which isn’t intrinsically wrong in any way but it seems to me to represent a feeling that people with learning disabilities are only capable of emotionally neutered art, of things that are ‘nice’ and ‘happy’ which from my experience is completely off the mark.”
So what does that phrase “learning disability arts” mean to the public? What constitutes “good art” is a notoriously subjective and personal view, but what is the quality of work being produced by people with learning disabilities? How is such art produced, judged, presented or received differently to “mainstream” art? How far do non-learning disabled artists who collaborate with people who have a learning disability lead the project – and what standard of art is produced?
The Brighton-based project, Creative Minds, is hoping to lead a much-needed national debate about these kinds of issues. Funded by the Arts Council, Brighton and Hove city council and the John Ellerman and Paul Hamlyn foundations, Creative Minds is run by a committee of learning disabled artists who want to “challenge perceptions of their work being labeled as ‘good therapy’ and have a national discussion about its quality and how that can be defined”.
Leading arts charity Carousel is facilitating the project with some good food for thought already given a platform via the Creative Minds website and the first in a series of conferences will be held in Brighton a week today, on Monday 10 March.
The aim is for learning disabled artists to showcase their work and lead discussions about it. The conferences are targeted at their peers, arts organisations, critics, funders, venue programmers and anyone interested in learning disability led arts
Performances, art and discussion includes Action Space London, Chris Pavia and Stop Gap Dance Company, Corali Dance Company, Face Front Theatre Company, Oska Bright Film Festival and Rocket Artists.
The Creative Minds steering committee explains that “as individual artists and performers we have had our work not taken seriously when we have shown it in theatres, galleries and on stage”. The group’s aim is “to change peoples ideas and perceptions and the way they see us”.
Hopefully the project and conferences will lead to a high profile debate that reaches beyond the learning disability arts sector.
As performer Bethan Kendrick writes on the Creative Minds site, “Having a learning disability informs your art and helps you produce work of a high quality. I have found that my confidence has grown because I perform my work to audiences. Thinking about quality will help you develop your skills, especially as you work with your company and your director. I take my performance work very seriously. This gives me great confidence in my art.”
• The Creative Minds conference is on Monday 10 March, 10am to 5pm at the Brighton Dome, Church St, Brighton (the venue is wheel chair accessible)
• Constant Flux presents the Fish Police on tour from next month, see website
How can someone with learning disabilities or mental health issues possibly own their own home? With a long-established but seldom-used form of housing called shared ownership.
The power of the part-rent, part-buy scheme to transform lives is illustrated in a new report, Space to live, published today by social care and housing provider Advance and Disability Rights UK. I was involved in writing part of the report and met home owners like Xenia Kyriacou, who is non-verbal and has complex needs.
Once asked to leave a restaurant after showing challenging behaviour and overturning a table in frustration (she was overwhelmed), only a few months ago, in another local restaurant near the two-bedroom flat she part-owns in east London, Xenia enjoyed a birthday lunch, was presented with a card from the owners and offered a discount on her return.
The change has happened since she moved out of residential care and into her own place.
Home ownership encourages confidence and independence, as was obvious when I met some of the home owners like Xenia and learned more about their experiences. The increased stability can reduce the costs of social care packages and help people get involved in their local areas. The timely report comes as the government considers funding plans for housing for post-2015, including its home ownership for learning disability (HOLD) programme.
Did you know Big Ben isn’t the name of the clock or the tower at the Houses of Parliament, but refers to the great bell inside the building?
How about the fact that the word “parliament” comes from the French, “parler”, meaning “to talk” (and yes, politicians could do with less rhetoric and more action).
These were just two facts my eight-year-old daughter pounced on during a recent family-friendly project at the Houses of Parliament.
This week is Parliament Week, a country-wide series of events that aim to engage people with parliamentary democracy. While the Houses of Parliament is one of the most instantly recognisable buildings in the world and children know its name, what goes on inside it is usually either a mystery or rather dull (unless, my daughter points out, you’re talking about Guy Fawkes).
Our recent visit was part of this year’s Big Draw event, although it reflects the ethos of Parliament Week. It involved an art workshop led by artist Rachel Gadsden to create four new works. Gadsden (who I’ve written about before here and here) is known for disability awareness raising work.
Gadsden’s ground-breaking project – the first time that the public has had the opportunity to contribute to artworks that will form part of the parliament art collection – is sponsored the Speaker’s Art Fund. The scheme involves the artist combining her own art with pieces created by the public in a series of workshops in Westminster Hall. The aims is to create new contemporary images based on mosaics of the UK’s four patron saints, St George, St David, St Andrew and St Patrick, which are in parliament’s central lobby.
Out visit included a “family-friendly” guided tour about the history, architecture and artwork in the Houses of Lords and Commons. The tour, according to my eight-year-old reviewer was “interesting but a bit too long” (I’d have to agree, despite the engaging anecdotes, an hour and 15 minutes with one stop to sit down can be difficult for most primary school pupils).
However, she “liked the information, like hearing that alarm bells sound in some buildings around parliament to call the MPs to vote”. She was loved some of the Tudor portraits after studying the period at school and was intrigued by the Queen’s robing room. Looking around the Commons and Lords has made some rather woolly concepts a little more accessible and real; she spotted the Commons on television recently, commenting that she had stood in the same room as the MPs.
After the tour, we joined workshop members creating everything from pencil drawings to mosaics based on the art they’d seen in parliament. As Gadsden says, “the subject matter is not set in stone and this is above all an ‘imaginative’ project, and participants contributed a range of drawings to which include interpretations, but also creations which express their personal identities.” Now the workshops are completed – participants’ original drawings were photocopied and included within the saints paintings that Gadsden is creating – the artist is working on the pieces and the public and MPs will have the chance to view them next year.
Gadsden, who has the eye disorder retinoschisis and lost the sight in her left eye this year, explains that her work is “underpinned by the notion of disability, viewed from a positive perspective.” As she says, “I just take every day at a time and concentrate on my inner vision rather than what I see with my eye”.
Gadsden has always championed the belief that disability is not regarded as a barrier to success; in 2007 she became the first contemporary artist in residence at Hampton Court Palace and was commissioned for London 2012 by Unlimited, the arts and disability programme launched for the four-year arts programme, the Cultural Olympiad.
The artist adds: “I hope that my artistic practice stands as an example of the importance of the right of freedom of expression: addressing issues relating to disability and, by doing so, contributing to the process of bringing about cultural change. So this commission has given me the opportunity to not only collaborate with the public at large to create the new ‘Saints’ paintings…but also to give a new younger audience the opportunity to visit parliament for the first time, and to have the chance to see the House of Lords and Commons and learn about the procedure of parliament as part of the overall process…it is vital for young people to have the opportunity to understand parliament”.
Given the current debate about increasing social mobility and aspiration, part of the solution is not only making “authority” more accessible – encouraging young people and people with disabilities to visit the, for example, the government’s seat of power, – but inviting people, once they set foot inside, to take part in something as creative and inclusive as an arts workshop.
* Rachel Gadsden tweets at @rachelgadsden
* Information about parliament’s education service is here, including its latest plans to create a dedicated education centre for children and young people.
* Social care provider Dimensions is hosting an accessible Question Time event this week, which I’m involved in, more details here
These candid images of caring are among the photographs in a new exhibition that focuses on the role of carers and disability.
Capturing the bond between disabled children and young adults and their parents, professionals, siblings and friends, tonight’s show from the charity Netbuddy raises awareness of the challenges faced by young disabled people ahead of the UN’s Children’s Day on Wednesday. The photographs are a refreshing take on the images of disability which usually appear in the public domain; although representing the difficulties experienced by the children and young people and their families and carers, they also present disability and caring in a family and social context.
The Faces of Caring exhibition by Netbuddy, an online community for parents, carers and professionals looking after people with special needs, includes photographs of people with complex medical needs and a range of learning disabilities.
* Faces of Caring starts at 6pm today The Hub, Tanner Street, London SE1. For more information, contact Netbuddy
My experience proves the benefits of volunteering for people with autism. I was born in 1959 and diagnosed with autism in 1963, at age four. I was one of Sybil Elgar’s first pupils at her progressive school. She was a pioneer in autism and helped develop my language and communication skills.
I then attended a local primary school in Edinburgh, where my mother and I moved, and a mainstream secondary school in London when we moved back to England in 1972. Art was my strongest subject (I passed several O Levels) and I studied furnishing design and textiles at the London College of Furniture. I got a diploma in art and design. I took more courses after that at a local art college and learned things like etching and print making. My most recent works are computer generated greetings cards (see the website).
Following a traumatic event in 2008, I developed severe depression and anxiety . After some time attending a psychiatric unit, social services support and help from my GP, a social worker suggested volunteering and I was put in touch with Volunteer Centre Camden.
It was through the volunteer centre that I started working at the Holy Cross Centre Trust in July 2011. It is a secular organisation in King’s Cross, London, which supports mental health recovery as well as homeless people, refugees and asylum seekers.
I hadn’t volunteered before although I’d had some experience of work. The place where I worked previously was a company providing unpaid employment for people with mental health issues and was run as a social service. The aim was to manufacture and distribute large volumes of greeting cards to the mass market but I wasn’t happy there. The tasks I was involved in were printing and packing greeting cards and using Photoshop on a computer for designing cards for later use and batch production.
I did not get satisfaction there as I was mostly restricted to printing other people’s designs and this did not allow me to express my own ideas. Their bias was to produce Christmas cards and my inspiration for designs comes from many sources which are irrelevant for Christmas. The repetitive tasks were soul-destroying.
But at the Holy Cross where I am now, my role is to help and encourage people to draw and paint, also to set up and tidy the art materials. I work noon to 3pm. Everyone is kind and friendly and there is a positive buzz to the place. Not only is helping out so satisfying and rewarding, it helps me to gain significantly in confidence and the thrill of feeling respected and valued as part of a team is fantastically liberating. I have made many friends and can see myself thriving there well in the future.
Suitable volunteering should be open to more autistic people as the skills required such as attention to detail, reliability or some special talents are well suited to the autistic trait and may prove to be great assets for the workplace. On their part autistic people can benefit from mixing and socialising with people of different nationalities and backgrounds and feeling respected and valued. To me the regular routines, the structure to the week and the sense of purpose in society are most satisfying.
Autistic people may encounter some difficulties. For example, travelling on public transport, especially long distances, or unintentional and misinterpreted challenging behaviour may cause problems. But with foresight, awareness about autism, guidance and the right support I see no reason why autistic people should not be accepted and be very successful doing voluntary work. I am quite sure that, giving the right conditions, volunteering can be “autism friendly”.
The fact I am high functioning autistic has presented no problems in my volunteering. One of the benefits of working there is that it has a knock-on effect on my closeness, love and affection towards members of the family. I now feel so optimistic about the future. Socialising now comes with ease. I am thrilled with life!
Shouty, sweary, noisy chaos, big stage personas, a self-proclaimed kick-ass attitude, loud drums, screeching guitars and songs about fighting and sex.
That this is a description of two punk bands currently touring the UK will hardly come as a shock. But the bands confound expectations in other ways; the gigs by Pertti Kurikan Nimipaivat (PKN), from Finland and Zombie Crash, a Brighton heavy metal band, represent the first time that two learning disabled bands will tour the country.
I’ve blogged before about PKN, the band is as likely to write lyrics arguing for respect and equality as it is to sing about avoiding trips to the pedicurist or to complain about residential care homes.
The four date tour, which began on Tuesday, is funded by the Arts Council England and organized by, Constant Flux, an arts organisation that provides opportunities to learning disabled musicians.
Richard Phoenix, who runs Constant Flux, explains: “Often when I talk to people about working with people with learning disabilities in music I encounter the “Aww…. That’s so nice” attitude, which isn’t intrinsically wrong in any way but it seems to me to represent a feeling that people with learning disabilities are only capable of emotionally neutered art, of things that are ‘nice’ and ‘happy’ which from my experience is completely off the mark.
“This tour is a perfect example to present people with something that totally challenges those perceptions, nothing about the bands music or performance is going to be ‘nice’ in any way shape or form. There will be shouting and swearing, with songs about not wanting to live in residential care, demands for respect and equality, songs about fighting, songs about sex.”
Richard says that the musicians’ uncompromising attitudes musical ability will shatter the stereotypical view of what people with learning disabilities can achieve, “this in turn will hopefully help positively affect attitudes toward those with learning disabilities”.
The fact the bands are touring is a vital part of the project, adds Richard. “Touring is something which is such a huge part of what it is to be a musician and being in a band, but for so long it has been extremely difficult to achieve within the learning disabled music scene because it can be such a financial and logistical nightmare.”
Kalle, who supports PKN, sums up the band’s gung-ho attitude: “They’re feeling very excited about this. They are used to playing gigs in tight schedules but never done this tight… but they don’t think about it. They love going abroad, even though some of them don’t really know, or care, where they are globally.”
Ryan, lead guitarist and vocalist with Zombie Crash, offers this response to the tour: “Metal unleashed from the learning disabled community! It means the ultimate activity for any band to put themselves through, to go on tour, to be as active as you possibly can. The fact that we’re doing this in the month of October and Halloween is the perfect timing for us to unleash hell!”
The fact the tour has promoted as a regular event – rather than as simply a “good cause” – should help “create situations where people with learning disabilities at a gig is normalised, where it’s not unusual or exceptional”, says Richard.
On a practical level, the touring musicians have to be supported. “Making this tour viable for learning disabled artists involved ensuring that, as vulnerable adults, the musicians were supported properly,” explains Richard, “so there are 22 of us on the tour, 10 band members and various members of support, some people require one-on-one support, there are members of creative support and musical facilitation, drivers and myself managing the tour.”
Safe, reliable accommodation has been booked in advance each night, unlike in the DIY touring network where you play a gig and don’t necessarily know where you’re staying that night. “The Arts Council was so important in making this whole thing happen…we’ve been able to book everything in advance and ensure that as much risk as possible is removed, also it has taken away the dimension of the tour being a success in a financial sense and has created a situation where it can be judged on it’s artistic merits.”
One interesting byproduct of the tour planning is that it has created debate about how best to promote the gigs. Richard adds: “The main question that is asked is that if the music can stand on its own then why does the element of disability have to come into the equation? There definitely is weight behind this argument, however in discussion with several artists with learning disabilities and parents and carers of artists, the over-riding feeling is that it is more important for these artists to be strong, empowered representatives of a largely under-represented and marginalised section of society.”
• The remaining tour dates are today, October 3, at Sheffield at Heeley Sport and Social Club (with Skiplickers and Amarous Dialogues) and Friday, October 4, in Brighton at The Green Door Store (with Good Throb and The Soft Walls). Both venues are accessible with accessible toilets and prices are £3 (carers free/donation only).
The central character, Matty, is played by Nathan Bessell, the playwright Sue Shield’s son. Shield’s semi-autobiographical story, about the peaks and troughs of bringing up her child, aims to present a real picture of parenting a young person with a learning disability.
Originally performed at Bristol’s Tobacco Factory Theatre, Up Down Boy is on national tour from September to November, starting with a relaxed performance at The Shed at the National Theatre tomorrow.
The premise is that Matty’s imminent departure for college sparks mixed emotions in his mother: “You’ve got to stop living on Planet Matty. You’re going away. You’re going to have to live in the real world”
As Shields has said: “The day we were told our son had Down’s syndrome we felt like the bottom had dropped from our world. I have now found from my own experiences that having a child with special needs gets you straight to the back of the queue, and that the special needs are often blatantly ignored. I found then that I had a choice – sink or swim. Stand up and fight for what I believed to be rightfully his or stay at the back of that line and accept what was handed out to him. I think too much of him to let this happen.”
I’ve never thought of my sister, above, as a saleswoman – she can be engaging, encouraging, persuasive and talkative, but she’s never actually sold me anything other than an idea (usually about what film to watch; invariably a Bond movie).
So my family and I were impressed – and proud – to see Raana in marketing mode (above, resplendent with pot for raffle ticket cash) for the first time on Saturday (scroll down for a gallery of snapshots).
Raana, along with some of her peers, formed a veritable raffle mafia – but not only was parting with cash in a good cause, it was impossible to say no when the ticket sellers assured you “this one’s a winner!” (this was clearly a sales spiel – neither I nor anyone in my family won a single thing…).
The open day in the Lantern’s grounds – with flowers, plants and fruit and veg in early autumnal bloom, stalls, food and live music – marked the opening of a new house, Silver Birches, for adults with learning disabilities. The day was also a celebration of the charity merger between the Lantern and Seahorses. Seahorses is four-star holiday accommodation on the Isle of Wight run by, with and for people with disabilities (as well as for those without) – a B&B with a bonus, as I explained in a recent Guardian piece.
From the fruit, vegetables and plants on sale and display to the bakery produce and the range of arts and crafts including pottery and woodwork, the day showcased the talents of a creative and inspiring group of people. And one of them, running from stall to stall with a book of pink tickets and a broad smile, refusing to stop to chat to me (“I’m busy! I’m working!”), was my saleswoman of a sister.
Talking to my eight-year-old daughter about the fact I was going to blog about our day with Raana, she immediately suggested a title for the story. It’s so neat and accurate, I think it rounds off the post and sums up the event perfectly: The Lantern Stars.