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Loneliness among older people: a new epidemic

Roy Warman’s wife, Phyllis, died in January 2015. Buoyed by well-wishers in the first few weeks of bereavement, the visits and telephone calls gradually dwindled, and he felt increasingly alone. Many of his friends have passed away, he does not have any family nearby and the couple never had children. He explains: “The longer it goes without speaking to someone, the harder it gets.” He describes loneliness as “one of the hardest things that you will encounter in life”, likening feeling low to “living in a void”.

Roy Warman credits Age UK with helping to turn his life around Photograph: Amanda Searle/Guardian

Today he is part of the charity Age UK’s telephone befriending service that matches older people with like-minded volunteers for friendship or phone calls. Roy has weekly phone calls with a volunteer he describes as “like the daughter I never had” and he also has regular visits from another volunteer as part of Age UK’s face-to-face befriending scheme.

The kind of weekly phone call or visit that Roy gets are among the solutions to help ease the loneliness epidemic affecting 1.2 million older people in England; I’ve written about this for the Guardian today.

Age UK says that 1.2 million older people are chronically lonely and that this has an adverse impact on mental health, and the challenge will increase as our population ages. In the next 20 years, England’s over-85 population is set to rise from nearly 1.3 million people to just under 2.8 million.

Read the full story here.

Growth of inclusive project to break barriers to ballet

The UK’s Flamingo Chicks also delivers inclusive dance workshops overseas, this is a session at the Multikids Academy school in Accra, Ghana (photograph: Flamingo Chicks)

 

“It is the one place she can be herself” is how one parent described the inclusive dance school I wrote about for the Guardian last year.

I’ve been following the progress of the Bristol-based Flamingo Chicks, which has just published its latest impact report and is now preparing for its spring show tomorrow, Saturday (you can read more about the background to the organisation in this original piece).

An inclusive dance session run by Flamingo Chicks (photograph: Flamingo Chicks)
The three-year-old community interest company, which has English National Ballet artistic director Tamara Rojo as a patron, brings disabled and non-disabled children together to do ballet.

Over 2000 children and young people aged 2 to 25 attended the classes and workshops in 2016-17 through workshops across the UK and regular classes in Bradford, York, Bristol, Cardiff, Leeds and London. The campaigning slogan is “ballet not barriers” and while the majority of young participants have a range of physical disabilities, learning disabilities and autism, 22% are not disabled.

The need for more more inclusive arts groups is reflected in a recent survey by charity Scope and parenting website Mumsnet. It showed that four in 10 parents of disabled children say their child rarely or never has the opportunity to play with non-disabled children.

Josie and her helper Joe at an inclusive dance session (photograph: Flamingo Chicks)

Josie Wilkins, who has a learning disability, attended mainstream dance classes with the help of her older sister, but as she got older the “gap” between her and the other pupils became wider and she had to leave. The family found Flamingo Chicks, where Josie, 10, who is also visually impaired, is a regular. She recently had major surgery but returned to class as soon as she was out of hospital, wearing, Ingrid adds “a pink tutu, and dancing in her wheelchair using just one arm!”

Recognising that preconceptions about ballet may put off boys, Flamingo Chicks launched boys only groups and introduced more male teachers and volunteers (in the last year, 38% of participants were boys). The company’s recent Dad & Me campaign also focused on the challenges fathers face when caring for a disabled child. Of 250 fathers who participated in a survey as part of the campaign, only 10% had told their boss they had a disabled child, mostly due to fear that it affect their career.

Alfie Pearson, who attends the inclusive dance sessions, with his dad and sister (photograph: Flamingo Kids)

The organisation has also delivered training and workshops overseas (I’ve blogged about this before), so its model can be emulated elsewhere. The overseas work includes collaborations with the special school in Ghana (pictured at the top of this post), a country once described as “the worst place in the world to be disabled”.

Find out more about Flamingo Chicks and its #balletnotbarriers campaign on the website, Facebook or Twitter

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.

Campaigner Jonathan Andrews on the talents and skills of autistic people

Jonathan Andrews was once advised to hide his autism from prospective employers. Instead, he is making his name by doing just the opposite.

The 22-year-old recently won campaigner of the year at the European Diversity Awards 2016 and talked to me about his work for a Guardian interview.

He’s involved in a plethora of awareness-raising projects, including sitting on the first parliamentary commission on autism. He also advised the government on its green paper on work, health and employment, which is out to consultation until later this month.

The graduate, who is an academic high-flyer, starts a trainee solicitor role later this year. He believes a law career will enable him to create practical change, but says combining law with campaigning is crucial. As he explains: “There is only so far legislation can go…you need to be winning hearts and minds to get change.” For his views on work and disability, see the full interview here.

He credits his family for their supportive role in his campaigning and he speaks powerfully about how his younger brother defended him against school bullies (“It was words like ‘retard’”). Jonathan stressed that it was in fact his brother who found it harder to deal with the verbal abuse: “I developed a thick skin, people used to tease me, but I always felt there would always be people like that and it was best not to focus on them. I came out in a better state than my brother, because I could shut it out and carry on – but for people who love you, it [trying to rise above verbal abuse directed at a relative] can be harder.”

An autism diagnosis at nine was, he says, useful in understanding his needs, but some of his parents’ friends reacted with sympathy. “The instant reaction was ‘I’m so sorry’. My mum would say ‘why?’ She said ‘my son hasn’t become autistic because of this diagnosis – it lets me understand it [autism] better; he’s always been my boy and is the same person he always was’.”

What struck me about Jonathan’s work – aside from the huge amount of awareness-raising at such a young age – is that he works on a range of diversity issues; along with autism, he raises awareness of mental health issues and LGBT equality. For example, he’s launching a best practice autism toolkit with the Commonwealth disability working group in April and hosting a related Commonwealth Day event in March.

He is also involved in promoting LGBT rights as co-founder of professional network the London Bisexual Network, challenging the idea that an autistic person “is not a sexual being because you are somehow ‘other’”. He adds of his campaigning on autism as well as LGBT issues: “People often think with autism you have to be interested in one thing and this means that you are great in one area and terrible at everything else.”

He also works to educate young people about domestic violence. He explains: “When I was child and I saw something that was wrong, I wanted to correct it and when I see something that is blatant injustice I just want to do what I can to help…[with domestic violence campaigning] I know what is is like to have a stable family, family that loves you, and I want others to be able to experience that.”

In fact, his broad range of campaigning interests reflects the change in attitudes which he is trying to achieve through his work: “People often think with autism you have to be interested in one thing and this means that you are great in one area and terrible at everything else.

The full interview is here.
You can follow Jonathan on Twitter @JonnyJAndrews

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

A nod to National Poetry Day

Reposting this, on National Poetry Day, from something I wrote a while back, just because I watched A World Without Down’s Syndrome last night and it got me thinking about, amongst many other things, what family and diversity mean (scroll down for a summary of what I thought…). Most doctors (academic and otherwise) discuss learning disability in terms of medicine and a list of conditions, in contrast to personality and character, so:

The Fabulous Raana Salman

What does “puck off” mean, you asked,
When a playground jibe you misheard,
It’s an insult, we said, with a bittersweet laugh,
And “puck” is quite a rude word.

You’re older now, and more in the know,
And you’re still just brilliantly funny,
We love how you call my other half “bro”,
And our mother is always called “mummies!”

You constantly amaze us with all that you do,
You garden, you cook and you bake,
You’re a music fan who likes her tunes loud,
Full volume – bloody early – at dawn break.

You love Chinese food and movie nights in,
And sometimes the pub if it’s near,
Remember your fury when we ordered you juice,
And you indignantly cried: “I want beer!”

“You’re fried!” you shout, knowingly wrong,
After watching The Apprentice on telly,
You say it when angry or to make us smile,
And it shows you’ve fire in your belly.

You’re creative and busy and do stuff we can’t,
You’ve woven and painted and grown,
I love having you stay so you’re able to see
How your art brightens up my home.

You’re thoughtful with gifts, matching present to person,
(You know I like peppermint tea)
We joke how “mummies” foots the bill sometimes,
And you say of your gifts: “They’re for free!”

You love baggy sweatshirts, they comfort and cloak,
You categorically refuse a posh frock,
You know your own mind, you’re fabulous and kind,
And basically Raans, you rock.

————————————————————————————————————-

And, some (very) brief thoughts on Sally Phillips’ documentary here:

European Diversity Awards

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Really pleased to be on the shortlist for this year’s European Diversity Awards in the journalism category.

Previous winners in the awards, which cover a range of areas and were launched in 2010, include TV presenter Ade Adepitan, trans-activist April Ashley MBE, Baroness Doreen Lawrence OBE, Lord Cashman of Limehouse, and a range of organisations that support and promote equality and diversity.

The shortlisting is based on work that “recognises achievement in all areas of diversity: race, age, sexual orientation, disability, gender identity and belief”, according to the organisers.

Winners will be announced at the end of November.
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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.

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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.