An inclusive ballet session at ballet school Flamingo Chicks (photo: Flamingo Chicks)
A Bristol-based dance project is spreading its inclusive arts campaign, training teachers to run ballet sessions for disabled children and their non-disabled counterparts.
UK-based Flamingo Chicks dance school ran pilot sessions in Ghana earlier this month (photo: Flamingo Chicks)
My piece on the Flamingo Chicks dance school, which launched two years ago as a community interest company, is on the Guardian site today. Its weekly classes in Bristol, Leeds, York and London reach 1200 three to 19-year-olds with or without disabilities, and those with illnesses such as cancer. Classes offer access to mainstream dance activity (often, such classes are segregated), develop confidence, social skills, co-ordination, communication and concentration.
Now, the sessions are launching in Ghana – dubbed “the worst place in the world to be disabled” – sessions reaching 200 children and training 10 teachers to put on classes. Founder Katie Sparkes has contacts in Africa thanks to her work supporting charities with corporate social responsibility.
A pilot dance session in Ghana (photo: Flamingo Chicks)
Sparkes says of the work in Ghana earlier this month: “We did lots of workshops with children aged two to 25 and also did a teachers’ training session where teachers and childcare workers from a variety of schools and orgs attended. We left them with lesson plans, equipment and a host of ideas. We’ve also set up an online ‘Global Chicks’ group where we can provide on-going outreach support. Any questions, ideas or motivation they need, our teachers will respond and coach them, also providing video tips or tutorials.”
Ballet, with its discipline and formal image, might not seem an obviously accessible art form, but Sparkes says it can improve body awareness, muscle strength and core stability. Its storytelling aspects and focus on character are also accessible.
Dance school Flamingo Chicks runs inclusive ballet classes for children of all abilities.
The school has eight teachers who focus on trips and performances as goals and benchmarks, instead of exams. The 45-minute or hour-long sessions include drama, dance and yoga using sensory equipment like feathers, dance ribbons, scarves and flashcards for deaf children, or hula-hoops to teach arm movements to a blind child. The relaxed atmosphere means children may wander around or makes noises without fear of flouting any rules.
There are an estimated 770,000 children with disabilities in the UK. Three quarters of families with disabled children feel so isolated that it has caused anxiety, depression and breakdown, according to charity Contact A Family. Four in ten (38%) parents of disabled children say their child ‘rarely’ or ‘never’ have the opportunity to socialise with children who aren’t disabled, according to a 2014 Mumsnet and Scope survey.
Claire Dyer’s family campaigned for her release from an inpatient unit 250 miles away. Claire features in today’s Guardian piece (thanks to Cath Dyer for the photo of Claire, who loves both music and Christmas)Four years after the abuse of people with learning disabilities at Winterbourne View (and 30 years after the start of care in the community and 20 years after the influential Mansell Report), NHS England recently unveiled a £45m plan to move people out of institutional care and back into communities. “Homes not hospitals”, is the laudable vision.
This is where grand ambition contrasts with grim actuality, as I explain in a piece in today’s Guardian.
A report leaked to the BBC and sparked by the preventable death of 18-year-old Connor Sparrowhawk in a Southern Health Trust inpatient unit, revealed that the trust failed to investigate some 1,000 deaths in its care over a four year period.
Then yesterday, the Learning Disability Census Report 2015 from the Health and Social Care Information Centre revealed there 3,000 people in inpatient units – 3,500 if you count those “unreported” in the figures (more on this here from Mencap and the Challenging Behaviour Foundation, and the HSCIC explains the discrepancy under its editors’ note number eight here).
Déjà vu? In 2013, according to the HSCIC, there were also around 3,000 people in inpatient units (in fact half those in units today, were also there for the 2013 headcount). And a previous £2.86m government-funded improvement programme from the Local Government Association and NHS England tried but failed to move everyone out of such units by 1 June 2014.
The census, established in response to the abuse at Winterbourne View, also shows the average length of patients’ stay is five years, there is heavy use of antipsychotic medication (almost three-quarters of people – despite the fact that less than a third have a diagnosed psychotic disorder) and more than half self-harm, have accidents or suffer assault, restraint or seclusion. Around a fifth of all inpatients are at least 100km from home.
Reading these stark facts would lead most of us to conclude that if you have a learning disability, you’re less likely to be cared for properly in life, unlikely to have your premature death investigated thoroughly – but if you’re lucky, you might be included in a census (depending on the data collection methodology etc etc).
I’m more pragmatic than negative. My sister, Raana, who has a learning disability, leads a busy, active life where her choice is central to her daily life. There are many organisations out there doing great stuff. I’ve met people who have moved from institutions into supported housing in towns and cities, with the help of truly brilliant, hardworking care staff. I’ve spoken to families who feel involved in shaping the care of their son, daughter or sibling, some with very complex needs. I’ve read – and written – reports outlining good practice in ensuring people get out of these places. While there’s still a postcode lottery at play, “we know what good looks like”, as stressed by many social care experts I speak to.
So as I began writing today’s Guardian piece, I’d expected a narrative of cautious optimism. As I came to finishing it, the Mazars report was leaked and new figures showed little change in the number of people in inpatient units, hence the headline above this post.
The report into Southern Health by auditors Mazars – which as I write, is still not published, despite making headlines and being debated in parliament – has renewed concerns over institutional disablism, led to calls for a national inquiry and, as this piece by Andy McNicoll underlines, provoked widespread criticism over the response of the trust and its chief executive (for links to some powerful blogging and commentary, search Twitter for #mazars or #JusticeforLB).
Katherine Runswick-Cole, senior research fellow at Manchester Metroplitan University’s research institute for health and social change, suggests that until the dehumanisation of people with learning disabilities ends, inadequate care – irrespective of care setting – may linger (related issues include, for example, a hospital listing a patient’s learning disability among reasons for sticking a “do not resuscitate” order on his file).
Recent cases in supported living and residential care – non-institutional environments – reflect this concern.
In January, Thomas Rawnsley’s family will attend a pre-inquest meeting into his death. The 20-year-old, who had Down’s syndrome and autism, was taken to hospital from a residential care home in Sheffield earlier this year, but died two days later.
His mother, Paula, says: “Thomas had great empathy and compassion, he always wanted to make people laugh. If people had taken time to get to know him they would’ve found that out.”
Robin Kitt Callender, a care home resident who was severely autistic and partially sighted, with communication difficulties, died on 23 May 2012, less than 24 hours after finally being admitted to hospital. An inquest in March ruled that she died from natural causes contributed to by neglect, with failings by her GP and hospital staff. Robin’s sister Karen has since launched the Casualties of Care campaign for better rights for people and families.
Dismissive attitudes towards people with learning disabilities extend to their families. As Deborah Coles, director of Inquest, has said, the Mazars report only came about “because of the tireless fight for the truth by the family of Connor Sparrowhawk”.
Meanwhile, back with the grand vision – well meaning and welcome as it is – NHS England says it is working closely with regulator the Care Quality Commission to prevent any new assessment and treatment institutions from being created. But in yet more ambition vs. actuality, the Public Accounts Committee has just criticised the CQC for being ineffective.
Connor Sparrowhawk’s mother Sara Ryan, a senior researcher and autism specialist at Oxford University’s Nuffield department of primary care health sciences, says that the Mazars report “confirms that learning disabled people don’t count in life or death” (see more on this on Sara’s blog). And this post by Chris Hatton suggests some “required reading for anyone wanting to understand the issues involved in premature deaths of people with learning disabilities”.
Hard to disagree with the conclusion of Katherine Runswick-Cole who said when I interviewed her, “the pattern is abuse, inquiry, report, repeat”.
Michael Baron, a National Autistic Society founder parent, whose son Timothy is 60, says of the concept of “a good death”: “At the age of 86, I want that for myself, but just as much I want that end of life conversation for people on the autism spectrum like my son.”
Michael, who is frequently asked to speak at conferences on the issue of ageing, autism and end of life care, has just contributed to what he calls “necessary and timely” guidance on end of life care for people with autism or a learning disability which is to be published on Friday – my Guardian piece here explains more.
The guidance from the British Institute of Learning Disability (BILD), Peaceful, Pain Free and Dignified: palliative and end-of-life-care for people on the autism spectrum, is unique due to its autism-specific focus and its step-by-step descriptions of how health and social care staff can offer better care.
“As his family, we don’t want the manner of Timothy’s death to be decided solely by others,” explains Michael. “He may be disabled and lack legal capacity but nonetheless, a ‘good death’ involves meaningful conversations [between individuals, families and staff] that acknowledge the absence of legal rights but the enduring presence of human rights. Families should be consulted [throughout end of life care] and no decision should be made which has not already been discussed, that is the minimum human right to which someone is entitled to.”
The UK is home to around 1.5 million learning disabled people, but the real figure, including the undiagnosed, may be higher. BILD says that by 2030, there will be a 30% increase in the number of adults with learning disabilities over 50 using social care (no figures exist for older autistic adults). This population faces health inequalities; the 2013 Department of Health-funded confidential inquiry into premature deaths of people with learning disabilities found that people die on average 16 years earlier than they should, because of poor diagnosis and treatment.
“We all wish for a pain free, peaceful and dignified end to our lives,” says Lesley Barcham, BILD’s ageing well project manager, “but for people with learning disabilities or autism, who may not be able to speak up for themselves, it can feel like this isn’t something they can control.”The publication stresses how autism or a learning disability affects end-of-life care. People may have verbal and non-verbal communication difficulties, for example.
Some support exists – advice on helping bereaved people with learning disabilities and the voluntary PCPLD Network (Palliative Care for People with Learning Disabilities) connecting disability and palliative care professionals – but learning disability end-of-life care has a low profile. A recent European Association for Palliative Care taskforce report on people with intellectual disabilities, describes “a largely invisible population with hidden needs”, warning of “a risk that their needs are therefore not seen as a priority, or even as a problem”.
As Ferguson says, there is a much wider question at stake. “It’s a much bigger issue about early diagnosis and early treatment planning for vulnerable individuals who struggle with self-advocacy…People with a learning disability or autism should have access to the same care that the rest of us do”.
* You can read more about how Timothy Baron and the first Society for Autistic Children – which became the National Autistic Society – in this good piece by his sister, Saskia, a journalist and TV producer.
Kim Wolf on her birthday, she inspired her brother’s poetry (photo: Rogan Wolf)
A poetry exhibition opening today aims to challenge attitudes about learning disability and mental ill-health.
The learning disability poems are partly a tribute to the late Kim Wolf, who had Down’s syndrome; the collection includes writing inspired by her and which reflects her perspective on life.
A collaboration between Kim’s brother, former mental health social worker and poet Rogan Wolf, and disability charity United Response, the exhibition, entitled Dignity and Light, aims to “address and challenge the stigma and stereotypes and fears still associated with learning disability and – even more – with mental ill health”. As Rogan explains: “If I can see what life is actually like for you, then I am more likely to recognise and not just dismiss you”.
The poetry has been “written with, by and about people with learning disabilities and mental health needs” (United Response explains more of the background to the project here).
Kim Wolf pictured as a newborn; she partly inspired a new poetry project (photo: Rogan Wolf)
The poems, part of the Poems for project that supplies poem-posters for public display free of charge, are on display at Bristol’s Paintworks from today until Thursday. The collection will then be available online, as an illustrated book and, it is hoped, used in schools to raise awareness.
Rogan says of the project’s aims: “There is still this common urge to treat people who are in some way ‘different’ as dangerous aliens, or objects of scorn or mockery, people we need to keep separate. Thus, learning disability and mental ill-health are both experienced by a minority of people in our society and, though the experiences are very different, the stigmatisation both can meet is the same. It cripples lives. It shuts them off.”
While acknowledging that poems are no substitute for policy or resources, Rogan says “they can connect and can enlighten”: “Politicians keep emphasising the urgency of the need for better mental health services and better understanding – I suspect to relatively little effect. There is a crisis here and it just continues. And reports keep emphasising the need for better mental health education and resources in schools, so that children already struggling can seek help at an early stage…[the poems] can help children who are struggling recognise what might be happening and what might help.”
The collections draw on poetry written or collected over the last four decades including through Rogan’s work, personal connections, creative writing workshops and the Postcards from the Edge project run by United Response.
The poem “Other People” by Shiraz, who is supported by United Response, was part of the postcards campaign: “People are like apples or eggs. They look all right on the surface, but you don’t know what’s going on inside.”
In another poem, “A father to his son (with Down’s syndrome)”, the author, John Mclorinan, describes his child as “wonderfully irreverent, irrelevant, inappropriate, spontaneous, topsy turvey, upside down. vulnerable, perceptive, aware, eager to communicate, willing to please”.
The collections that launch today, writes United Response’s director of policy Diane Lightfoot in the illustrated book that contains them, “shine a light on those who too often remain unseen in the shadows and on the fringes of our society”.
The poem below is by Rogan, written from the perspective of his late sister Kim. The poet explains: “We often went out together. Some of the words and phrases above are Kim’s own. Somehow she had to make sense of the way people looked at her, in the street, or when she entered a public room.”
Shall we go for a walk ? When I go for a walk people look round at me.
Will you come too ?
Will you hold my hand ?
They look round at me. There’s something wrong.
Will you come too ?
Perhaps I’ll put my ear-phones in and play my music extra loud.
I am going for a walk. What’s wrong ?
Will you come too ?
Will you hold my hand ?
* See Poemsfor.org to read more or read about the exhibition opening times here.
“Laws are all very well, but it’s people’s attitudes that need to change.” This comment from actor and Mencap ambassador Sarah Gordy pretty well sums up opinions about the impact of the Disability Discrimination Act (DDA) 1995.
The act, 20 years old this autumn, was regarded as weaker than hoped for by campaigners – not least because its ideals were hard to enforce – and it was replaced by the Equality Act 2010 combining all anti-discrimination legislation under one law.
Back in 1995, beginning my working life, I remember talk and action relating to the most visible aspects of the new law – the installation of ramps in the workplace, for example, and accessibility on public transport.
Recent research, such as a report by Demos and Scope, Destination Unknown, outlines the disproportionate effect on disabled people of cuts to benefits including Disability Living Allowance (DLA), Employment and Support Allowance and housing benefit. Other reforms include the closure of the Independent Living Fund (ILF) and changes to unemployment benefit.
Speaking to disability campaigners and activities for a Guardian piece recently was a good litmus test for the act’s legacy. For example, Debbie Domb, of Hammersmith and Fulham Disabled People’s Organisations Network, “welfare cuts are pushing us further out of sight to the margins of society”. Activist Wendy Perez of LDA (Learning Disability Alliance) England says disabled people are now “treated like scroungers and as people who just take”: “In the last few years it feels like things have gone backwards. There used to be a lot of hope; but now it feels like hope is gone.”
As mental health campaigner Lol Butterfield, who has blogged on this site, says: “The Disability Discrimination Act has provided protection and support for people experiencing mental health conditions but we can never become complacent. We must always be reviewing its use and strength in these times of discrimination against the mentally ill. I have witnessed many positive changes within mental health services and society over all these years. But sadly we still have a long way to go.”
Baroness Jane Campbell, crossbench peer, disability rights campaigner, chair of the All-Party Parliamentary Disability Group, adds: “I was extremely privileged to be part of shaping and helping implement the Disability Discrimination Act (DDA). This brought rights into disabled peoples’ lives, gradually replacing the culture of welfare and charity. Sadly, the momentum was never maintained as we had dreamed.
For Clenton Farquharson, disability and equality campaigner and director of community interest company Community Navigator Services, the DDA meant suddenly he was not longer invisible: “I had a right to be noticed…But 20 years on, sadly, there is still no monitoring or enforcing of the Act, leaving us to fight as individuals for our legal rights — and that is a daunting, expensive, and dispiriting process.”
The DDA still symbolises a turning point for disability rights but while it was launched in a hopeful fanfare, two decades on for many people, the legislation rings hollow.
The Forest, by theatre company Frozen Light, immerses the audience is in the multi-sensory world of (pic: JMA Photography)
“Today is different” is a recurrent phrase in the latest show from theatre group Frozen Light. But the refrain is more than just part of the script; the words also reflect the innovative company’s hope for young people with profound disabilities.
The plot of the accessible, inclusive and multi-sensory play involves a journey of self-discovery for the main characters, Thea (Amber Onat Gregory) and Robin (Al Watts). Both dream of escaping their humdrum hometown existence, and a series of unexpected events, explained by narrator Ivy (Lucy Garland), result in a forest adventure, which changes their lives.
Frozen Light, led by co-artistic directors Garland and Gregory, is among a handful of companies that devise productions especially for people with profound and multiple learning disabilities (PMLD). While cultural access and inclusion have improved in recent years (projects like Autism Friendly Screenings are part of a burgeoning movement), the arts barrier remains down to people with complex physical and cognitive issues.
The group is currently on a nationwide tour of high street theatres and arts spaces. Garland and Gregory say many of their audience members have never before been into a mainstream theatre: “We want to enable people who rarely attend high street arts venues to experience the theatre. With our 26-date tour, we hope to reach as many people with PMLD as possible…We want people with profound needs to be more visible in their local areas.”
Performing to a maximum of 12 people – six people with disabilities, each supported by a carer, the three-strong cast accompanies the audience from the foyer into the performance space, ensuring a smooth transition into the theatre environment. One-to-one interactions include actors singing or talking directly to an audience member, or offering a prop to be touched. The specially composed music is pitched at an appropriately sensitive level.
In the audience for the opening performance of the tour at the Gulbenkian in Canterbury, Kent, I was drawn into the show’s multi-sensory world; swathed by leaves with a warm breeze on my skin, I could smell forest fruits and the scent of a wood after rainfall (I’m not taking poetic liberties – this is a factual description of how the show sparks your senses). The actors captivate the audience with the use of simple props and, I won’t spoil it, but the combined effect of helium balloons, LEDs, torches and white discs is quite hypnotic.
It was noticeable how much time the actors spent with each person, adapting their interactions – language and behaviour – according to need, ability and interest. One young boy who particularly enjoyed the feel of rain drops on his hands was allowed time to explore the sensations and appearance of drizzle. His joyful reaction was priceless.
Given I write and read so much about (warning: social care jargon alert) “choice and control” and “person-centred planning” or “personalisation” (ie when the unambitious “choice and control” box ticking basically means offering someone the choice between water or tea to drink..) – this was truly “person-centred” performance.
I did some editorial support work the company some months ago and, having come across the show in its conceptual infancy, I was blown away – almost literally, given the multi-sensory context – to see the fully fledged performance (a note of transparency here: this blogpost is mine and mine alone, written in my own time and, like every post on this site, independent, unsolicited and unpaid for).
Talking to parents and carers in the foyer after the show, several told me how their young people are starved of theatre that is tailor-made with complex needs in mind, but which also manages to be high quality and pitched at the right level for the audience (ie unpatronising).
One father told me his visually impaired son’s attention span was short, but he was moved to see the teenager captivated by sound, scent, taste and touch during the performance.
After the show’s premiere at the New Wolsey Theatre, Norwich, website The Public Reviews described The Forest as “the ultimate 3D live interactive performance”, and this detailed review by Max J Freeman is worth reading too for its reflection of the audience’s thoughts. And this Guardian piece by Frozen Light explains how the group stages its work for its audience.
Provoking some thought and evoking the senses, The Forest leaves you wondering why every day can’t be as different for its audience as “today”.
Participants promoting their festival. Photo: Stephen CandyA few images here from an innovative digital arts festival due to take place this weekend (10-12 July). The interactive event, which I wrote about today for the Guardian’s online social care pages, will feature giant portraits of learning disabled people projected onto buildings, a game played with an accessible mapping app and an inclusive, high-tech design workshop to re-imagine a town centre.
Creating percussion sounds for the music element of the festival. Photo: Annalees Lim.Mixing music for the festival. Photo: Annalees Lim .SprungDigi crew member mixing SprungDigi theme song. Photo: Stephen Candy.
People with learning disabilities will help stage the innovative art installations and music and dance performances that they have created alongside digital and community arts practitioners. The inaugural SprungDigi Festival in Horsham, West Sussex, runs from Friday until Sunday.
The name of the free event reflects the concept that digital technology and online activity can be a springboard to social inclusion. The aim is to ensure that people with learning disabilities are more visible and feel more connected to their local areas. Read the rest of the piece here and check this festival page for more information about the weekend.
This weekend, I watched a film that should never have had to be made, about a young man who should never have died, featuring people who should never have experienced what they’ve been through.
If you follow this blog regularly, you’ve probably already seen the powerful film, The Tale of Laughing Boy, which was released on Saturday.
If you haven’t seen it then, for the reasons stressed in my opening lines, please spare 15 minutes to watch it.
Better still, watch, imagine and act, as the film’s concluding message urges its viewers.
The film is about the life of Connor Sparrowhawk (aka Laughing Boy). Connor, who had autism, a learning disability and epilepsy, was 18 when he died just over two years ago in Slade House, an assessment and treatment unit run by Southern Health NHS Foundation Trust.
He drowned in the bath on 4 July 2013, an entirely preventable death, as proved by an independent report demanded by his family. I covered the family’s experience here and if you don’t know his mother Sara Ryan’s blog, these extracts published in the Guardian reflect a little of what the family has been through.
Two years after Connor died, the family is still waiting for answers, a police investigation is ongoing and the outrage over his death has led to a powerful campaign, Justice for LB. It has also driven proposals for a new bill to boost the rights of people with learning disabilities and their families (see also this brilliant gallery featuring artwork created as part of the campaign).
The Tale of Laughing Boy should be required viewing for – well, for everyone, actually.
The issues it raises touch not just families of people with learning disabilities or people with learning disabilities themselves. The film is relevant not simply to professionals who work in health and social care or to politicians and policy makers who focus on these areas. In fact, Connor’s story begs the question of how society values (or rather, undervalues) people with learning disabilities and how we, as a collective bunch of human(e) beings, can (and should) positively respond.
The film, produced by self-advocacy charity My Life My Choice and Oxford Digital Media paints a warm, affectionate picture of Connor from childhood to young adulthood. Interviews, photographs and home movies celebrate Connor’s life as well as demanding answers about his death. It is a short, clear, accessible, arresting film – warm, beautiful, funny, and moving.
Connor’s family and friends speak with searing honesty about about the impact he made on their lives, and about the difficulty in his support (which is what triggered his admission into the unit). The teenager emerges as an engaging, entertaining, popular young character with a love of humour and a passion for music and buses.
Inspiring and amusing anecdotes show how much loved Connor was and is by his parents, siblings, grandparents, friends and support staff; one of his brothers recalls Connor’s claim that their mother was breaching his human rights by getting him to do the washing up.
Rich, Connor’s stepfather, describes the proposed new bill that the Justice for LB movement has sparked.
Rich explains that the objective is “to change the way in which the law works…At the moment local authorities and the NHS and other providers can pretty much put people where they want, what our bill proposes is that you simply will not be able to do that you will have to take full regard of the individual’s desire and wishes into account before making them a placement in residential accomodation…the bill tries to at least ensure or encourage that the knowledge, the love, the affection, the care, the experience that families have isn’t ignored by providers and is a full part of the process”
As Connor’s mother Sara says, it is “shameful” that there is a need to campaign “to give a certain set of people the same rights as everybody else”. Her son’s death, she adds, was terrible, wasteful, careless and preventable.
I wasn’t able to attend the launch of the film but Kate at My Life My Choice was kind enough to ask two of the contributors to the film, Tyrone and Shane, both of whom have learning disabilities, for their thoughts so I could add them to this post. Tyrone said: “Connor was a happy person – always talking about buses. I feel sorry that he died and wish it didn’t happen.” He also said that “taking part in the filming was fun.” Shane just wanted to reiterate “It’s terrible that this happened.”
In the film, it is another My Life My Care trustee, Tommy, who makes a powerful statement of the obvious; someone with epilepsy should never have been left alone in the bath. He says simply: “It’s not rocket science”.
Social inclusion: being “more busy” with people, places and projects is vital
“More busy”. This quote from Kelvin Burke of Rocket Artists reflects what people with learning disabilities need in order to be more included in society; people want to be busier with opportunities to do, make and see more things, to have more time to spend with people (incidentally, that’s people who hang out with you by choice and because they share your interests, not simply because they’re paid to support you).
Kelvin shared his words at a Tate Modern seminar on inclusive arts that I was involved in earlier this week. The event’s title – “a research discussion bringing together practitioners and academics to explore issues around inclusive arts practice” – doesn’t do it full justice.
This engaging, creative, interactive, collaborative and fun event (yes, fun! There was golden ink! Stickers! Sewing patterns! And cake – both drawn and real!) encouraged participants (academics as well as artists and performers with learning disabilities and without) to explore the barriers to social inclusion, within the context of the arts sector.
People on the table I chaired talked about what stopped them from being more involved in society as well as what needs to happen to change that.
Although these issues are something I’ve looked at before (see, this piece or an opinion piece here about the unequal treatment of learning disabled people), until Monday I’d not explored them with marker pens, golden ink, coloured stickers, gargantuan Post-it notes, A4 size speech bubbles and dressmaking patterns.
But there’s a first time for everything (and now I only ever want to write in golden ink).
More seriously, the method and materials were necessary if the discussion about access and inclusion was to be accessible and inclusive, so everyone had an equal opportunity to contribute thoughts, words, doodles and designs.
I can’t faithfully describe all the challenges and solutions identified in a room buzzing with the ideas of around 50 people, but a few ideas are captured in the images on this page. (unfortunately I wasn’t able to take a shot of the “Bolloxometer” designed, I believe, to slice through meaningless rhetoric purveyed by those in authority, but I’m first in the queue for this should it ever go into production).
Segment of a sewing pattern for a coat, decorated with hopes and solutions for the future for people with learning disabilitiesAnother segment of the coat pattern, reflecting how people with learning disabilities should be seen as people first, rather than being defined by their support needsOne idea to help celebrate differences…
Time was, however, a big theme for discussion. Those who work with people who have learning disabilities said they wanted more time for sustainable projects (rather than be caught in commissioners’ and grant-makers’ short-term funding cycles). People with learning disabilities said they wanted more time to do things they enjoy, as Kelvin said.
Words like “equality”, “access”, “value” and “listen” cropped up a lot. As did the importance of celebrating differences and valuing people for what they can do, not defining them by what they can’t. While the challenge of funding and cuts (both to social care and the arts sector) was a major concern, people were generally unwilling to focus on money alone as a problem or solution, when so much rests on changing the perception of people with learning disabilities.
Barriers to people with learning disabilities being included in society
Rocket Artists performed towards the end of the day, captured in this lovely shot shared on Twitter by Brighton arts organisation Phoenix:
— Phoenix Brighton (@PhoenixBrighton) June 1, 2015
The event also included the launch of a thought-provoking and beautifully produced new book, Inclusive Arts Practice. Authored by the University of Brighton’s Alice Fox (also artistic director of Rocket Artists) and Hannah Macpherson, it was created through interviews with and guidance from learning-disabled and non-learning-disabled artists. The book looks at inclusive arts – defined as “creative collaborations between leaning disabled and non-learning-disabled artists” – and its “socially transformative potential for collaborators and audiences”.
It addresses difficult questions, such as the differences between art therapy, occupational therapy and inclusive arts and clearly sets out the practical steps to create more collaborative art. The book acknowledges the fact that the term inclusive arts “presupposes exclusion” and asks how such collaborations between artists of different abilities can have real, cultural value (something I’ve blogged about before and which the Creative Minds project is exploring).
The book makes a persuasive case for everyone to have a cultural life in their communities; Southbank Centre director Jude Kelly, for example, comments in the book on how “we believe in cultural rights as a profound part of human rights”. Creative collaborations with the use of time, trust, skills and choice, are presented as “a force for societal good”:
“People with learning disabilities tend to be undervalued members of society, are much more likely to live in poverty, and are much more likely to suffer hate crime than their non-disabled counterparts. It is estimated that around 1.5 million people in the UK have a learning disability and over 3,000 of these people have spent over a year in an ‘assessment centre’, often a long way from family, and which is not designed to be a permanent residence. Many people with learning disabilities do not have access to any regular creative leisure activity outside their residential environment, despite the proven benefits of such activities for health, well-being and resilience…”
Inclusive arts can make audiences “feel differently about the people whose work they see and they can feel differently about themselves”, that is one powerful message in Inclusive Arts Practice.
Which is why the inclusive arts movement has an important place when it comes to equality for people with a learning disability. “We want greater powers to be seen, to vote, to be included, have the same opportunities in social life, education and employment as everyone else,” as campaigner Gary Bourlet says, or as the rights set out in the campaigning LB Bill show).
As for the sewing pattern that everyone contributed to on the day, one stylish spark made the beautiful observation that the final garment, emblazoned with words and images setting out some ways to break down social barriers, should have a sliver lining; the team from Brighton now plans to make the dream coat a real life action mac.
Anila Jolly and her older brother Sunil pictured recently
I’m so grateful to Anila Jolly (pictured above, with her brother Sunil) for speaking so frankly about her relationship with her sibling.
As she says, siblings of disabled adults are “largely invisible” to care providers, but their “insight and perspective can be valuable”.
There’s more on these issues in a piece on the Guardian’s social care network today; 1.7 million adults in the UK have grown up with a disabled brother or sister but campaigners say their support needs and caring role are overlooked.
My piece today focuses on the work of Sibs, the UK’s only charity for siblings of children and adults with a lifelong learning disability.
Sibs’ call for greater recognition for this comparatively invisible group is timely given the next tranche of welfare cuts, says its chief executive Monica McCaffrey – “people who don’t have critical or substantial need will have little or no support … siblings will have to ensure people are safe and we want them to have a voice within adult social care.”
In addition, the role of siblings should be seen in the context of Carers Week next week and the are growing calls for families to be fully involved in the care of disabled relatives (take the campaigning LB bill , for example).
You can read more here about siblings’ distinct role and how care providers and commissioners often underestimate their contribution.
