Award-winning sports enthusiast Adam Hayes has already won medals at boccia events, a target ball sport similar to petanque and bowls. As a keen footie fan and Chelsea supporter, the 20-year-old also enjoys a bit of hockey and football too. So it’s no surprise to his mates that he’s participating in the second ever Brighton Marathon next month.
Not only is Adam adding another string to his sporting bow, but he’s making history – Adam will be the first participant in a wheelchair to complete the 26-mile course.
Joining Adam on the start line on April 10th and pushing him along the course will be three Fethneys care staff, Gavin Parrish, Ollie Orchard and Lucie Hammond.
Adam Hayes, seated, the first wheelchair participant in the Brighton Marathon , pictured with (l-r) marathon teammates Ollie, Lucie and Gavin
The foursome is aiming to raise a target of £2,000 for Fethneys, which accommodates 10 young disabled people at a time, teaching them life skills like cooking, managing bills or cleaning and supporting them towards independent living.
“I feel very honoured to be the first wheelchair user in the whole of the country to take part in the Brighton Marathon,” says Adam. He adds of his boccia playing, “I competed in the GB championships and have won medals in regional and national athletics competitions. I also take part in wheelchair hockey and wheelchair football as a hobby.”
Moving into Fethneys five months ago from a local specialist college for disabled people, Adam says he loves his new home: “The staff here are teaching me the skills I need to live totally independently. Thanks to Fethneys I am really looking forward to living in my own flat in the near future – they are helping me to make my dream become a reality.”
To sponsor Adam, Lucie, Gavin, and Ollie visit their fundraising page.
Leonard Cheshire Disability has places on the 10 mile Great South Run on 30 October 2011. Contact the events team at events@LCDisability.org,
Peter White must be the only chartered accountant in the country with a corporate slogan that could belong to a social exclusion charity – “Nobody left behind” – a clutch of charity partnerships under his belt and a network of neighbourhood activists whose grassroots knowledge helps him do his job. Read my Society Guardian interview here with Peter White, the head of the BBC’s digital switchover scheme who is trying to ensure nobody is left with a blank TV screen.
The cuts agenda combined with local government red tape means forcing vulnerable people (and their families and carers) through hoops if they want to move from one council area to another – and there’s no guarantee of success if you attempt this. But learning disablity campaigners are calling for funding to follow individuals. A sort of portable personalised budget and assessment system is what’s needed.
The film is part of the charity’s submission to the government-appointed Commission on the Funding of Care and Support which is due to report back in July. The scenes here offer a snapshot of the sort of rich community life that my sister is thriving in at The Lantern Camphill community.
Liz Astor, mother to 18-year-old Olivia, who has autism, realised how desperate her daughter was to socialize on nights out with her peers when, in response to being offered a packet of dates to snack on, the teenager blurted out (entirely seriously and with great indignation): “I want to go on a date! I don’t want to eat one!”
Many similarly amusing moments tinged with a serious edge have been enjoyed in my family thanks to my youngest sister’s grappling with the vagaries of the English language and her inability to take words anything other than literally.
There was the time she stormed home from school, complaining that she had been told to “puck off!” in the playground. My mother was caught between the pedant’s reaction of correcting my sister for mishearing the word (“Actually darling, it’s not ‘puck off’ it’s…”) and an anger-fuelled desire to advise her to tell her potty-mouthed peers to puck right off back (coining a new breed of Shakespearean insult in the process perhaps?). Instead, we checked there was no bullying involved and told my sister to maintain a dignified silence.
The silent treatment shut those stupid playground puckers right up, I can tell you.
I digress. Thanks to her daughter’s literal take on the date conversation, Liz Astor realized how much Olivia wanted to enjoy the sort of nights out her mainstream peers take for granted.
Spotting a gap in provision for young autistic adults in her local area on the Surrey-Kent borders, she launched a not-for-profit group, Disco Dreams, late last year. The specialist nights in a community hall in Oxted, Surrey, are aimed at 18-30-year-olds with autism or moderate learning difficulties. “Why shouldn’t young people with autism have the same opportunities as others their age?” asks Liz.
Autism charities offer vital support for the autistic and their families, and there’s some great work being done by inclusive arts charities, but even without taking into account the fact their future is under threat in the funding cuts, opportunities for young adults with autism to socialise is patchy around the country.
The Disco Dreams nights are tailored specifically for those with autism; the DJ is aware of when noise levels overwhelm the young people, a chill-out zone provides a quiet space and entry is £10 but free to carers.
Aside from the social benefits, the positive impact of music, exercise and dance in relation to a host of health-related conditions is well-documented. For example, there was a great BBC documentary last year, Autism, Disco and Me, which showed how disco dancing transformed a young autistic boy’s life
Back on the Kent-Surrey borders, the next Disco Dreams night is scheduled for tomorrow night, Friday 21, if there is enough interest (email email@example.com for more information). The whole project is funded entirely by Liz, Lady Astor of Hever. Plugging a gap in provision in this way is very big society, but not every community is lucky enough to have such philanthropic verve in its midst. Let’s hope the venture is successful and inspires similar events elsewhere, so Olivia gets to eat her date and have one too.
I’m supporting the two-day online campaign, One Month Before Heartbreak, that took place this weekend against planned reforms to Disability Living Allowance (DLA), the disability benefit that allows tens of thousands of disabled people to get out and about from residential homes. The DLA consultation period ends on February 14th, Valentine’s Day.
In the words of blogger Brianb: “Many of us, concerned at the way the coalition government is bullying, victimising, stereotyping, abandoning and, stigmatising those of us who live with disability, have decided to publish blogs almost simultaneously to draw attention to these injustices being perpetrated”.
Given the warm glow the government wants to create with its big society approach, the cut seems even more unfair, and shortsighted, and as The Guardian’s David Brindle has highlighted, the cut is not only “the meanest and nastiest cut of all in the carnage that is sweeping through our public services” but is based on flawed reasoning.
Although individual campaigning organisations within the disability sector might have a history of being vocal, as a whole, individuals with disabilities and their carers aren’t much known for taking off their gloves and sticking their heads above the parapet. Until now. A huge, vibrant and persuasive online community of writers and campaigners is fighting injustice through blogging and on twitter.
As blogger Ned Ludd Carer points out, the cuts are “about locking up disabled people in their own homes and taking away the desperately needed care…This doesn’t have to happen. We need to stop these cuts before they do any more damage. We carers need to get our heads out of the sand and start shouting. We need to stop being the silent, heroic martyrs the press and TV love to wheel out for a nice heartwarming end to the programme. We need to be Carers With Attitude.” The gloves are off.
As the One Month Before Heartbreak campaign stresses, 100 years ago “disabled people were institutionalised and kept out of the public eye so that the public would need not feel embarrassed to look upon a disabled person.” The removal of DLA will trap the disabled in their care homes. And that’s something best consigned to the history books.
It is Saturday morning and 13-year-old James Hope is desperate to get to his activity club. His dad, Jim, reaches for his coat, but James is frustrated at having to wait. He stomps off to the car and waits silently, brows furrowed.
This scene takes place most Saturdays but rather than tiring of what other parents might regard as a mild teenage strop, Jim and his wife, Alison, celebrate it. James has autism and they are grateful that their son not only has a regular weekend activity but that he is keen to get to it.
When the revolution of care in the community took place, the decision to close long stay institutions resulted in a new, big idea; normal lifestyles, in normal houses, in normal streets.
People found themselves discharged from hospitals into small group homes in virtually every town in the UK. These were shared houses registered as care homes operating effectively as shared supported housing in the days before the supported living drive but without the important security of a tenancy. For many it felt like not only a new life, but a better one.
But now, just as people are looking forward to enjoying this life, due to bureaucratic, regulatory and financial reasons, people are trapped in unwanted small registered care homes. These homes are now closing because of running costs or the need to meet national minimum standards and changes in commissioning practice which prefer supported housing over ‘care homes’.
The problem is these closures are not happening in a strategic or orderly way, so the people living there face the prospect of another move into the unknown.
Take John, for example. He has a complex disability and moved from a long stay institution in 1986 to live in the community. His funding came from the council (let’s call it council A) where his parents lived although his new home was based in a different local authority area (council B).
In 1990 John moved to a smaller house, still registered as a care home (as it was before the supported living options became available), but less rural and with more to do in the community. The new house was still based in council B’s area and the funding arrangements continued.
Over the last 15 years John and his housemates have enjoyed a settled and fairly contented life building up their local support networks. Recently, two of the other people living there have moved on, leaving behind John and a fellow housemate, Mary (she is funded by council C).
The problem is that the charity that runs the home cannot find new people to move in to fill the vacancies – it has continued to run the service at a loss for the past two years.
The inability to find people to join John and Mary has been largely due to the understandable reluctance of authorities to make referrals to registered care placements.
As a solution, the charity could de-register the accommodation so it is no longer classed as a care home, but if it does so, it will come up against two bureaucratic barriers. Firstly, local government ‘ordinary residence’ rules mean council B would have to take on the support costs for John and Mary (while councils A and C would relinquish all funding). Secondly, council B is reluctant to open up its procurement arrangements to recognise the charity as a preferred contractor so will not place people there under contract for supported living!
Unknown to John and Mary, the home is likely to close and they will be faced with a move back to authorities A and C, a part of the country they haven’t lived in for over 20 years where not many family members remain. The costs to authorities A and C are very likely to increase while authority B will lose a good resource that could meet local needs.
Our 2007 report titled No Place Like Home recommended three actions: firstly to agree the principle of a person-centred approach to funding and placement, secondly for the government to issue guidance and thirdly to put in place a framework for funding to transfer between authorities.
In October the VODG published Not in My Backyard as a follow up and found that despite the fact that new guidance had been issued there was little evidence of good practice. VODG demands the government include the concept of portability of social care entitlement in the white paper on social care due to be published next year.
We must do right by people like John and Mary; they represent a particularly wronged generation of people. Regardless of promises for future reform we need a kind of national amnesty, one that ensures funding is in the right place, providers and commissioners are working in partnership and individuals are given a proper voice. Because putting people first is not just a one off action, it is an enduring commitment.
When, where, why and how much were you last really happy? It’s important, because the government plans to spend £2m on measuring our happiness.
For me, it was 2pm last Saturday in a checkout queue in Sainsbury’s, Ringwood, Hampshire. The standout moment of happiness was thanks to my youngest sister, who has Fragile X syndrome, and the charity Camphill. As for how happy I was (forgive the veering into Tom Cruise-esque sofa-jumping territory), it was a pure, punch-the-air-feelgood that catapulted my stomach upwards and made me want to hug my fellow shoppers.
While I avoid supermarkets on Saturdays – they are the next rung down on the ladder of hell from a weekend family trip to Ikea – I would join that checkout queue every week if it made me as happy as I was a few days ago.
So, happiness policy wonks, here’s one way to spread the love.
It’s Saturday and I’m visiting my 21-year-old sister, Raana, at the Camphill Lantern Community in Ringwood which she moved to in September from a Camphill college in Wadhurst, East Sussex. The Lantern is an adult community for the learning disabled which aims to foster greater independence in those who live and work there. Supported by staff and volunteers, Raana enjoys life in a shared house, is proud of her work in the shop and of her new skills in the bakery, has joined a local gym and is planning her Christmas shopping in Bournemouth.
Saturday is her shopping day so we’re at the supermarket. I’m impressed that my crowd-hating sister ducks and dives through bodies and baskets like a retail pro while I’m all at sea in an unfamiliar store. My sister’s enthusiasm and confidence hint at what is to follow…
We queue and, as her shopping is scanned, I remember she needs to top up her phone card and buy stamps. From ordering in restaurants to buying train tickets, communication with strangers has always been tricky so, like the rest of my family, I’ve become used to speaking up for her. We usually encourage her to make a stab at speaking for herself but, with the queue snaking behind us, for practical as well as historical reasons, I launch into support-mode autopilot: “And can we have…”
But suddenly my sister pierces the air with: “Can I have some stamps please?’ and I’m left gawping while an unprecedented exchange takes place:
Checkout girl: “Of course – what sort?”
Me (eyes wide as you’d like the checkout aisle to be): “…….!”
My sister: “Book of 12, first class please.”
Checkout girl: “Anything else?”
My sister (nonchalant, in control, ignoring my beaming face): “Yes, a top up on my phone card please.”
Checkout girl: “That’s it?”
My sister: “Yes, I’m paying on a card.”
Me: (grinning, restraining a high five, elbowing Tom off Oprah’s sofa): “RAANA! YOU’VE DONE YOUR OWN SHOPPING!”
Checkout girl and my sister look at me. I feel silly, but very happy.
My sister was clear, confident, polite and – and here’s the thing – her behaviour would have appeared to most people to be entirely unremarkable. She fitted in.
It’s the little things in life that matter – running errands might not be your idea of achievement, but for my sister, making a shopping list or paying for something herself reflects her growing independence. She is benefitting from the holistic approach to social care and education that she has enjoyed since the age of 16, when we first came across the Camphill movement.
“You’ve not replied to emails this week,” I say later. “I’m very busy!” she replies, indignantly. Raana is sometimes too busy working, learning and socialising to contact us – this is a sign of independence and security because when stressed, she bombards us with texts (my sister is phone-phobic, but I hope one day to have a telephone conversation with her). For the first time, she shares some common ground with her mainstream peers – the “too busy to phone home” line is not dissimilar to the one I’ve peddled since I was her age.
But the spending squeeze threatens to undermine the support provided by organisations like Camphill because the councils which fund those who live there will be reluctant to keep footing the bill. Local government bureaucracy and money wrangles along with government cuts to councils are huge threats to disability organisations.
To return to the happiness survey, the correlation between happiness and strong welfare and social support is well-documented. For example, as social policy professor Alan Walker notes, ‘social quality’ is key to measuring happiness; he defines social quality as how much people are able to participate in society under conditions that enhance their individual potential and wellbeing. Social quality is commonly used in European social policy and, says Walker, the essential foundations of social happiness include health care, housing, employment-related benefits and additional forms of social assistance.
Money alone won’t ever make you happy, but taking it away from social support, and from those who need it most, not only adversely affects their well-being, but that of others around them. And what’s more, the support my sister and her peers receive today unlocks their potential, enabling them to play their part in society tomorrow.
I’m sure the £2m plan to measure the nation’s happiness will include complex statistical science and a multitude of boxes to tick but I quite like this rather more simple equation:
Vulnerable person + resources x specialised support = happiness
From my Society Guardian feature this morning: Anna McNaughton fell in love with the West Sussex seaside town of Worthing when she moved there two years ago. It’s a stone’s throw from Brighton, around an hour by train from London, and its bars, cafes and restaurants are edged by a tree-lined promenade. Having had a room in a shared house since moving, the 23-year-old wants her own space.
Some interesting comments posted about this article by Guardian readers are here.
Rapper Dean Rodney has a soulful strut, a powerful pair of lungs and a learning disability. Dark shades, smooth black suit, definitely supercool. I’ll be at the Royal Festival Hall on London’s South Bank tonight to see his band, the Fish Police, a fired-up trio that fuses hip hop with funk and punk and lists Japanese anime and fast food among its eclectic inspirations.
Fish Police met when musician and lyricist Charles Stuart trained two learning disabled youngsters, Dean (now Fish Police singer, rapper, bass and lyrics) and Matthew Howe (the trio’s equally cool rhythm guitarist) as part of a youth band based at disability arts organisation Heart n Soul.
Next month the Fish Police will be releasing their debut album, Cheeseburger Man (Herbie Hancock’s Watermelon Man for the McDonald’s generation?), performing at the Lincoln Center in New York and at Liverpool’s DaDa Fest, the UK’s largest disability and deaf arts festival. Their music is a fresh and freestyling antidote to the conveyor-belt fodder jostling for space in today’s uninspiringly plastic charts.
I came across Heart n Soul over a year ago when I heard about one of its artists, soul singer Lizzie Emeh. Lizzie broke new ground by becoming what’s thought to be the first learning disabled solo artist to release an album to the general public. Loud and Proud was three years in the making and produced with the support of Heart n Soul, 33 years after Lizzie’s parents were told never she would never walk or talk following complications at birth.
In 1984, musician Mark Williams (now Heart n Soul’s director) wanted to explore how music and art could make a difference in communities. He began running creative sessions in east London for a group of people with learning disabilities who went to the local day centre, The Mulberry Centre. Eventually The Mulberry Crew, as they came to be known, moved into a bigger arts complex in Deptford and became Heart n Soul, with the aim of working towards professional productions – not simply, as was then the norm, undergoing art therapy.
The charity now runs a hugely popular club night for people with learning disabilities, the Beautiful Octopus club, and has a consultancy arm to advise other organisations on setting up cultural events for those with special needs. It also employs people with a learning disability and markets arts events to the learning disabled.
The Fish Police, Lizzie Emeh and their other talented peers are also regulars at Heart n Soul’s summer arts festival which is based on the Beautiful Octopus club night. The event isn’t on most people’s summer festival radars, but it should be. Along with live music, the event a couple of months ago boasted a comedy stage, improv and open mic sessions, face painting, a massage tent, a chill out zone designed by the Brockley Jack Studio Theatre, cinema room, dance floor and VJs and DJs. Performance art is notoriously hard to pull off, but the trio of artists performing as Live Heart did so with panache, demonstrating why the Tate Modern recently invited them to perform. K:DNA showed off their inspired blend of funk, reggae and classical music while the Riki Jodelko Band were an amazingly tight soul-pop outfit, astounding when they covered Bill Withers’ Lovely Day and Bob Marley’s Could You Be Loved.
Best of all, I loved the inclusive nature of the event. The Beautiful Octopus invites everyone to have a good time, regardless of ability or special need. When you enter the world of Heart n Soul’s festivals or club nights, when you immerse yourself in the melee of fancy dress, fairy wings and face paints, when someone in a clown outfit tumbles head over heels into a perfect cartwheel right in front of you, whether they have a learning disability or not is irrelevant – what’s important is that they’re having fun. And it’s infectious.
Frankly, in this environment (compared to other events I’ve blogged about) it’s impossible not to roll with the good times. I’m working on my cartwheel for next summer…for tonight, the shades and soulful strut will have to do.
* The Beautiful Octopus Club is at the Royal Festival Hall, Southbank Centre, tonight (Friday 8 Oct) 7pm-12am. Entry is free.