Category Archives: Third sector

Social work: the next generation

Rashmi Becker, disability advocate and founder of inclusive dance project Step Change
A guest post by Rashmi Becker

Against a backdrop of funding cuts, headlines about poor practice and high staff turnover in the sector, it is easy to see how the personal aspect of ‘care’ can become lost. The increased focus on efficiencies, paperwork and risk avoidance can often shift the focus from people to process.

These were among the issues discussed when I recently spoke to BA and MA students at Coventry University as a visiting lecturer. I was interested in what expectations and views people preparing to enter the world of social work had of the sector, and what had motivated their choice of career.

I have spent two decades working for central government, social care providers and now, as a PhD researcher at the University of Cambridge examining what quality of life means to people with learning disabilities in residential care. An advocate for disability sport, I also recently co-founded an inclusive dance company that provides disabled and non-disabled people with the chance to learn in an inclusive environment. In addition, I am guardian to my older brother who has autism. So I started by asking the student-filled lecture theatre to indicate if they had a relative with a disability. Almost everyone raised their hand.

I was struck by the maturity, insight, and engagement of the students I met. They wanted to work in social care because they see themselves as caring. But already so early into their careers, many had met with challenges and wanted guidance and support but were not sure how to access this.

I spoke about the duty of every individual to take ownership of better practice, and not to allow poor practice to happen around them by saying nothing. A student approached me during the break. She said she had witnessed physical abuse in a care home during her placement but she was so junior she felt unable to do anything. I advised her of the regulatory authority and how to report abuse confidentially but there was wider concern among students that in a tight-knit environment where staff know each other well and there is a culture of solidarity, it would be difficult to report poor practice without being identified and singled-out. There was an echo of support for one student’s view that one can feel disempowered to make a difference when the scale of the challenge seems so vast or as she put it: ‘what difference can I make when the system is so broken’.

Hearing comments like this, I was heartened by the students’ willingness to self-reflect on how they can make a personal impact on people’s lives in spite of the wider challenges. We discussed what quality of life and identity means for people with disabilities. I shared case studies of support workers and how they had enabled people to achieve their potential by making efforts to engage on a personal, individual level and thinking about what someone can do not what they can’t.

I spoke about my work around inclusive dance through Step Change Studios, which provides disabled and non-disabled people with the chance to learn in an inclusive environment, and the feedback from disabled people on what being active and participating in society on an equal platform means to them. I was really pleased to receive feedback which showed that students understood that inclusion was not simply about taking part in an activity but goes much deeper. As one student said: ‘The description of the woman with a disability who said as a dancer she could feel like a beautiful woman was powerful and made me realise that people with disabilities often don’t ever get to see themselves in this way’.

As another student commented after the lecture: ‘I was really struck by the way Rashmi spoke about social work becoming ‘transactional’ – this is my experience of how a lot of learning disabilities services are. Relationships happen, but the emphasis that managers have is ticking boxes.’

The students also asked for advice on how to cope with challenging situations and people, I reflected on what I have learned during difficult times: identify good people who can inspire you and don’t be distracted by negative people; focus on potential not obstacles; making a small difference is better than doing nothing; and look after your wellbeing because you cannot be of value to someone else if you do not value yourself.

* Rashmi Becker’s Step Change Studios is holding a ‘Strictly’ style competition at Stratford Circus, East London, today (Monday 24th April) with care provider East Thames involving people with learning disabilities. The event is being held in advance of the UNESCO International Day of Dance next Saturday, 29 April. Contact Step Change for more information.

* A previous post on wheelchair dance can be read here.

Unique art from survivors of brain injury

Artist Nick Mayers, a member of the Submit to Love studio collective.
Artists Nick Mayers, a member of the Submit to Love studio collective.

A unique art collective in London consisting of brain injury survivors is exhibiting its “unguarded, emotive” work for the first time.

The Submit to Love Studios, supported by brain injury charity Headway East London, is a creative space in Hackney for over 50 survivors of brain injury – barely any of the artists had practiced art before their injuries. The work of around 30 of the collective’s members is featured in a new exhibition that runs until 23 February at Stratford Circus Arts Centre.

MRI, by Graham Naylor, showing as part of an exhibition by brain injury survivors (credit: Headway east London)
MRI, by Graham Naylor, showing as part of an exhibition by brain injury survivors (credit: Headway east London)
Artist Jon Barry's work, Lady in Green, in progress.
Artist Jon Barry’s work, Lady in Green, in progress.
Birds, by Laura Wood
Birds, by Laura Wood

While many of the creatives have had solo exhibitions since joining the project, this is the first time they are showing work that outlines how their experiences, including recovery, have influenced their art. The show asks visitors to consider the question “how far can one life-changing incident be seen in the artistic work you create?”.

In a related event this Saturday, the collective, which began 10 years ago, is involved in an free art workshop at London’s Southbank Centre. The event involves the artists encouraging the public to participate in on the theme of “what love means to you” with contributions acting as the basis for a collaborative piece at the Submit to Love studio. The workshop takes place in the Clore Ballroom at Royal Festival Hall on Saturday 11am – 2pm and is recommended for ages six upwards.

Freckle Face, by Chippy Aiton
Freckle Face, by Chippy Aiton
Elvis in London, by Cecil Waldron
Elvis in London, by Cecil Waldron
Creature, by Ad
Creature, by Ad

According to Headway, survivors of brain injury are often excluded from society, have lost skills, occupations and cannot communicate as they used to; art is an outlet for communication and self-expression. The charity is keen to reposition art from a simple rehabilitation activity to “both a vocation and passion project”.

Three Chicks Going to a Do, by Tony Allen
Three Chicks Going to a Do, by Tony Allen

* The exhibition, sponsored by Hyphen Law, is open 9am-6pm (Mon-Sat) and 09.30am–2pm (Sun) until Tuesday 23 February 2017 and entry is free. Venue: Stratford Circus Arts Centre, Theatre Square, London E15

Using tech to transform philanthropy

Tech entrepreneur Alexandre Mars is known in his native France as the French Bill Gates. Having made his fortune creating and selling tech startups, Mars, 41, founded Epic Foundation two years ago. In an interview for The Guardian, Mars explains how his orgnaisation aims to encourage tech-savvy investors to donate to children’s and young people’s charities it has selected.

The UK was recently ranked eighth in an annual global league table for individual giving. Figures from the National Council for Voluntary Organisations suggest we donated £19.4bn to the UK voluntary sector in 2013-14. This is 44% of the voluntary sectors’ income.

Mars believes a debate is needed “to explore opportunities and strategies for increasing giving”. At at time when trust in charities is at an all-time low following criticism of some traditional fundraising practices, new ways of engaging donors through technology is surely needed. Such challenges are expected to feature in next year’s House of Lords select committee report on charities, with its focus on digital innovation and financial sustainability.

How does he define the role of philanthropists versus the state? “We need policymakers, we need strong leaders … [but] they don’t have enough money, so where is it [the money]? It’s with the corporate world most of the time, so how can we [business] just step up?”

Read the rest of the interview here.

Street theatre focuses on social isolation

Two characters in a scene from pop-up street show The Loneliness Street Cabaret.
Two characters in a scene from pop-up street show The Loneliness Street Cabaret.

Are you too busy with tech to talk? How well do you know your older neighbours? Do you think your local community involves everyone in it?

A pop-up street theatre performance this week will focus on the epidemic of loneliness and the growing isolation of older people, as I explain on the Guardian website today.

A young audience member gets involved in a recent performance of the Loneliness Street Cabaret.
A young audience member gets involved in a recent performance of the Loneliness Street Cabaret.

The Loneliness Street Cabaret, an outdoor street performance from the Beautiful Mess Theatre Company, is showing from Tuesday to Thursday (4 to 7 October) as part of the month-long Age UK Lambeth’s Celebrating Age Festival in London.

The theatre performance, which takes place in different public spaces across the south London borough, is inspired by the fact that loneliness is increasing at a time when our our cities are becoming ever more crowded. The show has been developed using anecdotes, opinions and experiences of older people in south London.

A character is chastised in the Loneliness Street Cabaret for being too distracted by his phone to interact with people.
A character is chastised in the Loneliness Street Cabaret for being too distracted by his phone to interact with people.

The shows are performed in public spaces, from outside tube stations to public squares, in the hope that the shared experience of performance will spark the audience to have conversations and take action based on the show’s themes. Osborne says the aim is to provoke people to consider the issues highlighted by the performance: “It’s about your local community and how you fit within it,” says creative producer Chloe Osborne, “but also about what your responsibility is for ensuring that others belong in it too.”

You can read the entire piece here.

* All photos from the Beautiful Mess Theatre Company

Designing for dementia

This year, 225,000 people will develop dementia – that’s one person every three minutes – and 70 per cent of people in care homes have dementia or severe memory problems.

There are 850,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2025. This will soar to 2 million by 2051, according to the Alzheimer’s Society.

Despite the prevalence of the issue, a recent report raised serious questions over how prepared we are for the needs of the ageing population. And other research suggests dementia patients are subject to a care postcode lottery ; a further study published yesterday (World Alzheimer’s Day) showed there is no reduction in the use of antipsychotic drugs in dementia care, despite government guidance.

Encouraging dementia-friendly design is an important part of the debate and some of the innovative developments in this area are a welcome contrast to the lack of progress elsewhere.

Care and support charity the Abbeyfield Society has unveiled a £9m new development, Abbeyfield Winnersh, in Berkshire. Early images give one an idea of how design can be used to support people with dementia. Granted, the images look a bit eerie on account of the noticeably absent people, but they at least offer a glimpse of what the new developments in dementia design can offer.

abbeyfield-households-with-their-dementia-friendly-window-memory-spaces
Each of the 60 residents in Abbeyfield Winnersh will have their own ‘window’ next to their front door (pictured above) – effectively a memory box with instantly recognisable, personal items to help them identify their own door.

winnersh-view-reva-960x276
All bedrooms – all leading onto an outdoor space – are arranged in six, circular clusters of 10 ‘households’ aiming to offer a more homely, community feel.

castleoak-winnersh-56
The furniture and furnishings have been chosen to reduce anxiety with, says Abbeyfield “calming colours and textures chosen to stimulate the senses and promote reminiscent memories”.

castleoak-winnersh-23
Facilities for family and friends include a playground for young children, above.

Involving the friends and relatives of care home residents in the life of a care home is a crucial and not often acknowledged issue in dementia support. As a previous post on this blog by Kate Murray stresses, the importance of helping children understand and be aware of dementia cannot be underestimated.

London artist Laura beats thousands vying for Royal Academy spot

Post Party, pencil drawing by Laura Broughton
Post Party, pencil drawing by Laura Broughton

This beautiful pencil drawing by artist Laura Broughton is among those chosen for the highly competitive Royal Academy Summer Exhibition.

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 .

I met Laura three years ago when I covered her work as an “expert by experience”. Laura’s role as an inspector of social care services, supported by charity Choice Support, led to her involvement in a themed review of 150 learning disability services after the Winterbourne View scandal.

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:

Two people, by Laura Broughton
Two people, by Laura Broughton
Couple in London, by Laura Broughton
Couple in London, by Laura Broughton
People walking, by Laura Broughton
People walking, by Laura Broughton

* Laura can be contacted on laurabroughtonartist@live.com
The website laurabroughtonartist.weebly.com shows some of Laura’s earlier work and will be updated with more current work in coming weeks.

* The RA Summer Exhibition is open daily until the August 12; Laura’s piece, Post Party, is piece number 196 and is on display in the Harry & Carol Djanogly Room.

Campaign for the capital’s first sensory bus

Kay Alston's campaign for London's first sensory bus was inspired by her use of sensory books (photo: Kay Alston/Outward)
Kay Alston’s campaign for London’s first sensory bus was inspired by her use of sensory books (photo: Kay Alston/Outward)

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.

Kay Alston in her sensory room at home in London.
Kay Alston in her sensory room at home in London.

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.”

Weather-inspired inclusive art on public display

Redstart Arts weatherSCAPE project is on display in London this week (photo: Redstart Arts)
Redstart Arts weatherSCAPE project is on display in south London this week (all photos: Redstart Arts/Sinead Kempley)

Clouds suspended from the ceiling and lighting bolt sculptures form part of a new installation from a London-based inclusive art collective.

Redstart Arts: stencilling work in preparation for this week's exhibition
Redstart Arts: stencilling work in preparation for the exhibition (all photos: Redstart)

Redstart Arts, a collaborative group of artists with learning disabilities, have been developing weatherSCAPE for several months and the works are now open for public view, coinciding with Learning Disability Week.

The aim of Redstart is to encourage its members’ creativity, critical thinking and also to challenge public preconceptions about artists with learning disabilities. The artists do this through producing high quality pieces of art for public exhibition and by using community arts venues to create the works.

Artist Colleen Campbell says she enjoys “drawing on big paper, being with my friends”. For fellow Redstart member Uduehi Imienwarin, it is “using the stencil to make the weather words” that is particularly interesting. Byron McCarthy, meanwhile, says he loves the “purple lightning” and, referring to the research behind the installation, “books on weather”.

Another participant, David Quan, has no speech but likes to do printing using bubble wrap. Gerard Allen is similarly non-verbal, but Cash Aspeek, an inclusive arts specialist who launched the group in 2011, says that his mood and behaviours reflect that he is especially taken by the opportunity to perform with the Redstart group “whenever the opportunity arises”.

Drawing and detailing at Redstart Arts
Drawing and detailing at Redstart Arts

Redstart Arts has a residency at the Deptford Lounge and the Horniman Museum. The group meets weekly and involves up to 10 artists with learning disabilities aged 25 to 29 who collaborate with other artists. For example, local artist Chris Marshall has worked with the group on the weather project, which was mostly funded by the Arts Council.

Sculpture produced for weatherSCAPE by Redstart Arts
Sculpture produced for weatherSCAPE by Redstart Arts

Cash and Chris say the inspiration for “came from the artists in the 6o’s who worked with inflatables and free form events, breaking barriers in terms of art being inclusive, including people and communities”…Redstart Arts have responded to the environment of the Deptford Lounge, they discovered the atrium space at the back of the building and got excited by its height and drama…[and wished] to explore this space to its fullest potential creating floating free forms derived out of our discussions and observations of our local dramatic weather.”

Cash explains how the project is led by the people involved: “They come in with ideas; we have a lot of art materials available and such a lot of room for each artist to express themselves in a way they really want. We do a lot of experimenting with materials and then seeing what people are drawn to, really observing what each person leans towards.”

In 2012, the artists created figures for the Olympics which were displayed on the rooftop of ATP gallery in Deptford. The collective’s next project involves creating discovery boxes – participants’ personal box of made objects for public display – for the Horniman Museum.

* weatherSCAPE can be seen 10am-5pm from Wednesday 22 June to Sunday 3 July at the Atrium, Deptford Lounge, Deptford SE8 4RJ

New campaign for autism-friendly libraries

Brody Ginn, who features in a training video to help create a network of autism-friendly libraries (pic: Dimensions)
Brody Ginn, in a still shot from a training video shot at Chelmsford library – the video is part of a new initiative to create a network of autism-friendly libraries (pic: Dimensions)

“Please be friendly and non judgemental. Don’t be shocked if I’m noisy and unpredictable. Smile, and please be nice to my mum, going out can be stressful for us all!”

“This is the way I am and sometimes I find it difficult not to talk to myself in the library so please be patient with me. Don’t keep staring at me. Please be kind to me.”

“Sometimes I can be noisy but I don’t like noise. Please don’t shush me or ask me to leave. These things hurt my feelings and can make me noisier. Be patient. Maybe even provide a small sensory room with soundproofing so I can calm down safely without causing problems with noise in your quiet library.”

These are among the comments made by people with autism as part of research that has led to a new campaign, launched today, for a network of autism-friendly libraries.

As I explain in a piece for the Guardian, a survey of 460 people with autism and their families by social care provider Dimensions suggests that 90% of people with autism would use their library more if adjustments were made.

Responding to concerns, Dimensions and the Association of Senior Children’s and Education Librarians (ASCEL) are collaborating to develop a network of autism-friendly libraries. The aim of the initiative – which is launching at the annual seminar of the Society of Chief Librarians – is to turn England’s 3,000 or so public libraries into more welcoming venues for people who have autism.

A poster available as part of the autism-friendly libraries campaign
A poster available as part of the autism-friendly libraries campaign

The drive, backed by £7,000 from the Arts Council, includes free resources for staff such as training videos, fact sheets, posters and social stories (short, informative descriptions of situations, so people know what to expect when they visit). The work in libraries builds on the model already developed by Dimensions with cinemas,

Being judged, being stared at or told to be quiet are among the main reasons people with autism and their families avoid going to their local library. “Libraries are quiet places so my son could make a noise and I would know others weren’t judging me as a parent,” as one parent told researchers developing the campaign.

In the current funding climate, with cutbacks to services and a downturn in borrowing, it makes financial sense to cater to more people, as well as creating a wider social benefit and encouraging inclusion and equality.

Libraries should be open to all sections of our communities, or as one person with autism explained about the experience of visiting the library: “Don’t tell me to shh! Or look at me like I am a criminal”.

* For more information about autism-friendly libraries follow #autismlibraries on Twitter or check the ASCEL or Dimensions websites

‘She had a life worth living – she was comprehensively failed’

Robin Kitt Callender was 53 when she died following a treatable illness
Robin Kitt Callender was 53 when she died following a treatable illness

How do families of people with learning disabilities or autism feel they are treated by health and social care professionals? According to Karen Callender Caplan, who I interviewed for the Guardian, “You feel dismissed, you feel ignored … you have to gird your loins, you have to be ready to be bullish and persistent.”

Caplan’s sister Robin, who was severely autistic, had mild spina bifida and was partially sighted, died four years ago. She had been ill for over three months with intermittent vomiting and diarrhea, but the first her family heard of her condition was on the day before she died. In the months before collapsing at her Essex care home, the 53-year-old, visited her GP surgery six times and A&E twice. Yet her inflammatory bowel disease – a treatable illness – remained undiagnosed.

Despite says bereaved relatives must become campaigners, pursuing answers from disparate agencies.

An inquest last May at Walthamstow coroner’s court, in east London, concluded Robin died of natural causes contributed to by neglect, with expert witnesses noting missed opportunities to save her. However, there is be a second inquest this autumn as new evidence is to be presented about Callender’s medical care. The pre-inquest hearing takes places next week.

Caplan hopes the new development will reignite the family’s campaign for a “Robin’s law”. This would make it a criminal offence for a care home not to inform next of kin if someone they support, who lacks capacity to act in their own best interests, has an ongoing illness, and then dies. They also want there to be a duty on medical staff to inform relatives when treating such patients.

Equally important are more rights for the individuals supported so they have more control over their own lives. This is what the ongoing campaign for the LB Bill -sparked by the preventable death of Connor Sparrowhawk – would put in place.

Robin’s story is among the latest (but by no means the only) evidence that people with learning disabilities receive poorer care, are at higher risk of dying, and that professionals do not fully involve families in their care. To take just one example, data released to the Guardian under freedom of information showed that English hospitals investigated just 222 out of 1,638 deaths of patients with learning disabilities since 2011.

You can read the entire piece here.

* See more information about Robin’s Law on Karen’s campaign website or on Facebook