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.
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?”
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.
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.
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.
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”.
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.
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 email@example.com
The website laurabroughtonartist.weebly.com shows some of Laura’s earlier work and will be updated with more current work in coming weeks.
Ben was admitted to an assessment and treatment unit (ATU) miles from his home after his first supported living placement broke down. After the ATU, he moved to a newly built flat nearer his family but that support has now also broken down. He has to move again, into temporary accommodation, while care commissioners organise the next option.
When I interviewed Ben’s mother, Catherine, she was both eloquent and outspoken as she described how the human rights of her son were being eroded after he was repeatedly failed by the very system designed to support him.
This is where we are today. Upwards of 2,500 people stuck in inappropriate, discredited care, and the strong will to get them out is being undermined by the lack of a clear way.
And meanwhile, many parents – every single one of whom has spent years relentlessly fighting for the right support – feel they cannot always openly challenge the authorities, such is the fragile and often hostile relationship between families and commissioners of care.
* Names and details in the article have been changed
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.”
Dance, says WDSA patron Rashmi Becker, has no boundaries: “It is for everyone and can be enjoyed anywhere….Dance can make us think, smile, relate to one another, it can be a positive motivating force and simply, it is good for our well-being.”
All photos: WDSA
For more information, watch the short film Motion, recently commissioned by WDSA:
I visited the Ley at the invitation of Chris, who volunteers at the centre; his life now is about as far removed from his past as is possible. The Krays ruled London’s gangland in the 1960s and were imprisoned for murder. Chris was present on the night Jack ‘the hat’ Mcvittie was stabbed to death. His presence and silence that night in naming Reggie Kray as the murderer resulted in Chris being jailed for 15 years.
Whilst in prison Chris, now 78-years-old, reflected on his life and the mistakes he had made. He wondered how he had found himself to be in such a position. Like many other prisoners Chris ‘found’ God. But unlike many others who use this as a cynical ploy to seek freedom early, Chris knew his life had to change and was determined to make that happen. He wanted to make a difference to others. On his release in the early 1980s he began working at the Ley. His voluntary work there includes accompanying people to court and generally giving them the encouragement to try and turn their lives around.
I had read about Chris’s work in his autobiography, The Kray Madness, and contacted him to discuss our mutual interest in helping people to turn their lives around. After a few phone calls, he invited me to Oxfordshire to a look around the Ley. The centre initially struck me as quite regimented, but it has to be that way to encourage the residents to make the efforts to come off drugs and show self discipline and determination. There is a strong emphasis on group discussions, peer pressure and support, openness and self responsibility.
We have different backgrounds and seemingly different areas of interest – me with mental health campaigning and Chris supporting the rehabilitation of people with addiction issues. Yet we both have a desire to use our life experiences to make a positive difference for others.
Chris has an influential role among young men because of his Kray connections, with much recent interest in his life thanks to the Tom Hardy film Legend – Chris advised on the movie. Chris is not volunteering as much at the Ley due to his age, but when he does he accompanies people to court, and generally encourages them to try to transform their lifestyles and behaviours. They see him as a positive role model and he can relate to them.
Supportive networks are vital to recovery and a focus on relationships is the theme of Mental Health Awareness Week next week. Social contact is the best way of breaking down barriers, misunderstanding, and ignorance of mental illness. It is important for us to have good relationships for our own mental health in the sense of talking and listening to each other.
My own work, for example, has been aimed at encouraging men to seek help early for mental health issues and self-harm. My most recent media advisory role was advising the storyline involving the ‘macho’ character Zak Dingle in TVs Emmerdale during his depression storyline.
Tragically we have very high rates of self-harm among young men in my native north east. Much of this is a consequence of the damaging ‘Big boys don’t cry’ attitude among men, and the damaging misperception that men expressing their feelings is a sign of weakness. This is something Chris would relate to in his own work.
Challenging stigma and addressing feelings of shame is something Chris and I share as a common goal.
Through social media, Facebook, and social contact, we are both starting to chip away at the damaging defensive layering common to all tough guys. We are trying to convince men who think they are somehow immune from mental illness that nothing could be further from the truth.
We have discussed the idea of a joint project, perhaps a book, to try to reach out to men in particular who self harm and feel stigmatised because of having mental illness. Together we are determined to make a difference; we have more in common then we think.
As Ruth Gould, the artistic director of the UK’s biggest disability arts event, DaDaFest, pointed out in an interview I did with her for the Guardian, the latest cuts threaten to make disabled people “more invisible”. The work of disabled artists, as she says, is also at risk, thanks to sharp reductions in funding from local authorities and Arts Council England (Ace).
In 2001, Gould organised a one-off community arts event for Liverpool city council to mark International Disabled Peoples’ Day. As the head of the North West Disability Arts Forum (NWDAF), Gould, who is deaf, argued a single day was inadequate, and designed a groundbreaking week-long festival.
Fifteen years on, DaDaFest is the UK’s biggest disability arts event and Gould its artistic director. The NWDAF eventually adopted the name of the jewel in its crown (“DaDa” refers to the initial letters of each word in the phrase “disability and deaf arts”), so DaDaFest refers to both the festival and its parent charity. Each biennial extravaganza draws 10,000 visitors and participants. It has launched the careers of comedian Laurence Clark and actor Liz Carr, and helped Liverpool win European Capital of Culture 2008.
Gould commends the Arts Council’s Creative Case for Diversity, launched in 2014 to encourage more BME, deaf and disabled people into arts, but fears such efforts are a drop in the ocean. She explains: “We don’t have the disabled people who put people on the stage – the producers, the casting directors, curators, decision makers.” She adds of DaDaFest’s recent BME seminar: “We tried to attract those we see as gatekeepers…[to] look at the barriers and issues and use them to try and influence change by identifying benchmarks that we can reflect onto to see if change if happening.”
As my piece on the Guardian website today explains, community nurses can be employed by NHS trusts, GPs, charities such as Dementia UK or private providers delivering NHS services. However, their numbers are falling. The decline might be attributed to primary care trusts transferring provision to other organisations under the government’s Transforming Community Services programme because those nurses moving to non-NHS providers are not captured in relevant workforce data.
The fall in numbers coincides with healthcare reforms that make their role even more important. “District nurses will be likely to play a significant role in the NHS reforms, particularly around new models of care that shift more care into the community,” according to Rachael Addicott, senior research fellow at health thinktank The King’s Fund.
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..