Laura’s piece, Post Party, is one of 1,240 chosen from 12,000 submissions and the original was snapped up by a buyer on the second private viewing day.
Having her submission chosen for the annual show, says Laura, who has a learning disability, has made her feel “equal”. She adds that it was a “massive goal” to be accepted for the exhibition but that she was also “scared, excited, amazed”.
Laura explains what she enjoys about her work: “l lose my difficulties in the moment of creating. I feel from finding life difficult, it becomes clearer. As l make decisions in my drawing l just feel my way through and fill it with colour and drawing .
Although Laura’s artistic work was not one of our interview topics, we chatted afterwards about her art studies, progress and plans. I remember Laura explaining how important the creative process was to her and how important it was for her to develop and succeed. Three years on, she is fulfilling her ambitions by being accepted for the Royal Academy event; it is the biggest open art exhibitions in the UK and has taken place every year since 1769.
Laura says of making art: “l lose my difficulties in the moment of creating. I feel from finding life difficult it becomes clearer. As l make decisions in my drawing, l just feel my way through and fill it with colour and drawing.”
This is Laura’s artist statement: “I tend to notice social interaction. People’s characteristics are often displayed externally. As I draw following the line I somehow see inside as well as outside and clothing adds its own story. I draw to enjoy and convey something of the often, quirky nature of how I see and to provide a wry smile. I invent using colour and line and I am experimental in the way I use line and create structure. I choose different paper surfaces to do this.”
And here are some more examples of Laura’s work:
* Laura can be contacted on firstname.lastname@example.org
The website laurabroughtonartist.weebly.com shows some of Laura’s earlier work and will be updated with more current work in coming weeks.
Responding to a lack of relaxing, interactive spaces for disabled people, Londoner Kay Alston has decided to launch her own campaign for the capital’s first ever sensory bus.
The 32-year-old, who has moderate learning disabilities, is backed in her social enterprise project to create a mobile sensory room by Outward, the care and support charity that runs her supported living in Camden, north London.
Kay needs to raise £28,245 towards creating the project. A sensory room is a relaxing environment designed to focus on specific senses through special objects, and sound and visual effects. It enables people to interact with, and control the environment around them and is particularly beneficial for people with sensory impairments, complex needs and those with autism.
The idea is that people would pay a minimal fee to use the bus, with the money being reinvested into the social enterprise. The accessible vehicle would include elements like interactive carpets, star ceiling and LED Projectors.
Here, Kay explains why her project is so vital:
“Someone once said that sensory rooms have effects of taking medication without taking the medication. The room would be a stimulating place for people, and it could help to reduce anxiety and stress, and help to improve their concentration. People with disabilities should come to sensory rooms because it’s fun and fascinating.
“The sensory room on a bus will be an interactive and a calming environment. It will have an interactive floor, platform swing, bubble tubes and light projectors with music playing in the background too. The bus will be accessible to wheelchair users. It’s purpose would be to calm and stimulate people, by giving them an interactive and visually stimulating environment.
My idea was inspired by the Autism Show. I went to in 2014 where I got a sensory tactile book, and I have been to other sensory rooms and they’re lots of fun. I have been to day centres and nursing homes where people with high needs simply get parked on the side and have nothing to do. Outward was running a Dragon’s Den competition and staff who already knew of my idea encouraged me to enter. Outward invested in my idea and said they will help me set it up. Outward staff spoke to me about the online fundraising campaign, and helped put it online and I handed out over 100 leaflets to places I shop in, people I know and places where I use their services. It’s also nice to be a little famous.
I hope the bus will be a fun and interactive place for people to learn new things. People with high needs find it difficult to get out, and can’t easily go to a place like a sensory room. Everyone can do what they want and behave in a way where they won’t be judged, sometimes I walk along the street and laugh and people look at me funny and it makes me think I want more control. In a sensory bus I could have more control.
I want to run it through a social enterprise to make it bigger and better, to add new inventions and more equipment to use. The bus will drive around to different places to give more people a chance to experience and use it.
There isn’t a sensory bus in London, and there aren’t many sensory rooms in London. The sensory rooms in London aren’t properly maintained, so I have only been to sensory rooms outside of London. But some people can’t travel that far or outside of London, so a sensory bus would make it easier by going to them. People haven’t thought of a sensory room in London to be on a bus, and there isn’t a sensory room with an interactive floor.
The most difficult thing so far has been getting enough people to pledge as I don’t have many connections. But it is a unique idea because there isn’t a sensory bus in London. If we could make this happen it would be a great achievement for me and would help lots of people in London.”
When newlywed Tessa got back to the hotel with husband Mark after their wedding, she found he’d arranged a surprise – he had scattered flowers and balloons around the room.
As Tessa recalls in a new project and book, Great Interactions by photographer Polly Braden: “I kept laughing at Mark – he was trying to throw the flowers around me…He’s happy now he’s married. We love each other. Being married doesn’t feel any different. That’s it. It makes me feel happy. Mark’s already got his name, so his wife will be Tessa Jane Ahrens, that’s mine and Mark’s choice. I used to be Warhurst – not anymore now. When my bus pass has run out they’re going to change my name on it.”
The couple’s story is one of many documented in Braden’s book and exhibition. The project aims to capture the daily lives of people with learning disabilities, from everyday interactions to landmark events like Mark and Tessa’s wedding. The book will be published next month and the images will also be featured in an exhibition at the National Media Museum, Bradford.
Polly Braden spent two years working with social care charity MacIntyre and the people it supports across the UK. The resulting work, refreshingly, offers a glimpse of the diverse, individual, ordinary lives of people with learning disabilities – around 1.5m people in the UK have a learning disability, but the population, usually seen as a homogeneous mass or single statistic, is defined by needs and lack of ability, as opposed to current or future potential.
Braden’s work does not gloss over the problems, but offers a different perspective. She explains: “The people I have met all have stories about the barriers, prejudice and ignorance they and their loved ones have faced in simply trying to have fair opportunities in life. But their stories are also inspiring and filled with heart-warming moments which would have seemed impossible to imagine earlier in their lives – from being active and using public transport to graduating from high school and getting married.”
The photographer’s aim was to try to take photos about support “at the best it can be, but not to gloss over the profound problems in the provision of care and support and the challenges around this as well”. The project tries to look at what can be achieved for people when they are given good support, “and to talk about what happens when they are not”.
The aim of the project is “to challenge out-dated, institutionalised images and improve public awareness by recognising and highlighting the every day interactions and life changing experience of people with a learning disability”. It also focuses on social care professionals’ attitudes towards and relationship with the people they support. As one support worker, Raul, told Braden of the person he works with: “Mikey needs this kind of support: he needs to be around people who know and understand him, who are willing to go a step further and discover the bright and amazing person he is.”
* All photographs by Polly Braden, the book Great Interactions is out in March and the six-week exhibition at the National Media Museum, Bradford, opens on 27 February.
* To mark the book’s launch, the National Media Museum and MacIntyre are asking people to share photos of “everyday moments that make life matter” on Instagram, using the hashtag #IamMe – see the website for more information
* For more reading, see this Guardian feature published at the weekend..
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.”
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.
By 2025 there will be one million people with dementia in the UK, according to the Alzheimer’s Society; a project I reported on today for the Guardian online is proving the impact of arts-based therapy on people with the condition.
Take Eddie (not his real name). When he first met arts practitioner Jill, from London-based arts group Age Exchange, he was withdrawn and uncommunicative.
Eyes downcast, head bowed, hands clasped and legs crossed; Eddie, an introverted wheelchair user, had been in a dementia care home for a decade when he began sessions Jill.
Over six weekly reminiscence arts sessions – work that explores memories using creative activity – Jill noticed how Eddie became “awake, sitting upright in his wheelchair, trying to talk, being better at regulating his mood and behaviour … He felt safe enough to allow himself to express some of these stored up energies and feelings through movement and making sounds which freed him and allowed him to start opening up and connecting with people.”
A simple gesture after the final session – previously unimaginable – reflected the transformation. Jill recalls: “I was very touched as we said goodbye; he extended his right hand towards me, I took it and we shook hands.”
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.
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”.
The MBE recently won by Shaun Webster is, he says “two fingers” to the bullying colleagues who tormented him when he worked in a warehouse some years ago.
You can’t disagree with the 43-year-old’s use of frank language – his deeply unpleasant workmates once used sticky tape to bind Webster, who has a learning disability, and stuffed a rag in his mouth. This was done “as a joke”, he recalls in an interview I did for today’s Guardian. Little wonder he has devoted his life since then to fighting for inclusion and equality.
As explained in today’s piece, the international project worker for Leeds-based human rights charity Change is a sought-after speaker and trainer in the UK and overseas. His work includes advising government departments about inclusive employment, promoting access to sex and health education for learning disabled people and recent visits to Thailand and Croatia to train health, social care and charity professionals about independent living and disability rights.
Shaun talks passionately and persuasively about issues like employment rights and independent living for people with learning disabilities, making the point (usually missed by policy makers and politicians) that the two issues must be seen together; earning your own money and having a role and responsibility supports independence.
Shaun’s current work involves a partnership with children’s charity Lumos, supporting young people to leave institutions and gain independence, choice and control. Linked to that piece of work is the report Shaun wrote, Leaving Institutions, a really great example of a publication written with a clear focus on people (not targets or statistics, or a homogeneous mass) by authors who truly know about and have experience of what they’re talking about.
The entire interview can be read here and the film below is worth a watch too:
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.
Paul Luscombe rises confidently from his wheelchair, sets one foot in front of the other and walks steadily between the parallel bars in the rehabilitation gym of his care home.
The simple task is, as Luscombe says, amazing, given that a stroke five years ago left him unable to walk. When he moved into the home from hospital, he spent most days in a wheelchair, hunched over the weaker right side of his body.
Today the 50-year-old’s speech is limited and he cannot yet walk unaided, but he is proud of his “gradual progress” at the Peter Gidney Neurodisability Centre in Dartford, Kent. Luscombe’s care at the privately run home is funded by his local clinical commissioning group, NHS Dartford Gravesham and Swanley CCG, and the possibility that he may live independently again is, he says, thanks to the physiotherapy that is “so important” in that care.
I saw for myself how determined Paul was and how vital the role of physiotherapy is in his care when I met him last week. The full piece is in the Guardian tomorrow and online today and explains how research by the Stroke Association and the Chartered Society of Physiotherapy (CSP) shows that stroke survivors entering care homes are “written off” and not offered adequate rehab treatment.
New residents, according to the study, do not get a stroke-specific assessment within 72 hours of their admission, ignoring National Institute for Health and Care Excellence (Nice) stroke guidelines.