Chim, in a photograph for the halow project’s new art show (pic: Kitty Day)
Young photographer Kitty Day, whose sister has a learning disability, wanted to to offer an alternative way for her sibling to express herself – visually.
The result is an exhibition of photographs, entitled This is me, my Voice, my Choice, involving her sister and other young people supported by the Surrey-based charity halow (sic). The show, which opens today, includes portraits of the young people where they present themselves purely as they wish. I’m sharing two of the images, of Chim and Tommy, here.
Tommy, photographed as part of the halow project’s new exhibition (pic: Kitty Day)
Some participants also altered their images with colour or other materials (images not included shown) “to show themselves as they wanted to be seen”, says the charity which works with young people aged 16-35.
Young people from the halow project (pic: Kitty Day)
halow, based in Guildford, supports young people with a learning disability “to have the same life choices and chances as any other young person”.
“I wanted to give them the power to express their personality and who they really are, without someone trying to do it for them,” adds Kitty.“I had little control in the studio but I had even less in the editing. The project was done in two stages – one when the group visited me at the studio at City of Westminster College. The second stage was when control was totally given to them. They had a day to personalise their images through cutting, sticking, colouring – whatever they wanted, and I saw the photographs change completely and come to life…I learnt so much about the young people, their perception of themselves and the power of control.”
The exhibition also includes paintings where people depict themselves as a superhero of their choice.
* The exhibition runs at St Mary’s church, Quarry Street, Guilford, from Tuesday until Thursday – contact halow for opening times. Entry is free, says the charity, but donations would be appreciated. On Friday, the exhibition changes venue and culminates in a choir concert at Holy Trinity church in the High Street. Tickets cost £10.00 and are available from halow or tickets can be purchased from the Tourist Information Centre in the High Street.
If you’ve been following the debate about turning the rhetoric of community integration into reality and the plans to tackle the failures in supporting people who have a learning disability, you’ll know there’s a massive gulf between what should happen and what actually happens; between what national policy sets out as “good practice” ideals and what takes place on the ground.
This was brought home to me not only through what I’ve been researching and writing recently, but when I was told of the experience of a group of young people with complex physical disabilities in south east London.
The group from Family Link, Bromley, a charity that offers supports outside school and at weekends, visited a computer store on a Saturday morning. They were looking forward to seeing the latest gadgets and testing some of the equipment on display.
But,they were barely there a few minutes when they were asked by a member of staff to “move on” if they weren’t actually buying anything – despite the fact that there were plenty of their (non-disabled, non-wheelchair using) peers browsing just as they were.
Computer says no.
In fact, the computer your face/body doesn’t fit – so get out.
The group leader protested but, clearly made to feel unwelcome, they left. The charity has since complained to the company, which has apparently noted its objection. Family Link is awaiting a reply. The organiser of the group says she still feels cross thinking about it several days after the event.
She’s not alone, it’s hard not to feel angry about incidents like this, where people with disabilities are made to feel inferior or unwelcome in public places – as I know and have blogged before. And how ironic that the charity had the misfortune to meet such a backward-thinking dinosaur in an evnironment championing the forward-moving digital world.
I won’t name the store here as I’ve not approached it for comment, so to point the finger at the company without offering a right to reply would be shoddy treatment (though, for the record, not as shoddy as the two fingers apparently flicked at the vulnerable young people simply enjoying a morning out).
Maybe there was a misunderstanding. Maybe it simply a rogue sales assistant who didn’t know his Disability Discrimination Act from his disk drive. Maybe there’s lax management at play that allows such attitudes to prevail.
Or maybe it’s because, as I’ve blogged before, despite years of good practice, policy and guidelines, the real pace of change out here in the real world for people with complex needs is slow.
The computer store incident is also regrettable, given what technology offers not only through its assistive form but through its educational benefits (in fact a new report today from the National Literacy Trust and Pearson underlines how touch-screen systems could tackle low literacy among boys and disadvantaged children). There’s the social aspect to technology too; something as simple as a smart phone allows easy use of text and email, for example, meaning my phone-call shunning youngest sister and I can stay in touch more easily.
This stark contrast between practice and possibility was underlined when I heard of an innovative new technology enabling disabled children to design and print objects in 3D – using only their eyes.
The SHIVA design and print system can be used by students with complex disabilities (pic: Livability)
Disability charity Livability is currently using SHIVA (Sculpture for Health-care: Interaction and Virtual Art in 3D) at its Victoria Education Centre, a school for children with physical disabilities.
The ground breaking collaborative project was created by a group including Mark Moseley, assistive technologist at the school, the National Centre for Computer Animation at Bournemouth University and researchers from the University of Lille.
In a nutshell, “eye-gaze technology tracks where a user is looking and translates it into screen coordinates so that on screen cells or buttons can be selected”. Around 15 pupils with varying levels of disability have used the software and many models have already been produced.
3D design created by “eye-gaze” technology, used by students with disabilities supported by the charity Livability (pic: Livability)
The creators now hope that new funding can be found so that the software can be further developed and used by more young people.
I hope so.
More people with disabilities should – if they want to – be free to road test interesting existing and new technologies, trying out software in high street computer stores, for example, rather than being asked to leave them.
Connor Sparrowhawk, who died a preventable death in a Southern Health NHS Foundation Trust unit.Stephen Andrade-Martinez is detained in an inpatient unit 80 miles from his London home. He is pictured (right) with his brother Josh.Tianze Ni, from Fife, stuck in a Middlesborough inpatient unit miles from home.
It is now three years since the abuse inflicted on people with learning disabilities at Winterbourne View highlighted the desperate need to get people out of such institutional settings.
In those three years, we know of two people who have died in these kind of assessment and treatment units since then (Connor Sparrowhawk, pictured at the top of the page, and Stephanie Bincliffe). Many more – Tianze and Stephen (also pictured above) among them – are still being placed by health and social care authorities in such places.
Read that first sentence again – two people died (they had no life-threatening illnesses) in a clinical environment where they were placed for care, assessment and treatment – and ask how it is possible that we can let this happen?
Why “we”? Because of the collective responsibility: public and private sector funders enable these places to be created; health and social care providers run them; commissioners place people in them; politicians and policy makers seem unable to hold anyone to account for them; there is little mainstream interest media reporting in this area and the public – beyond shock at the odd high profile headline – is generally apathetic.
The fact that there have been two deaths in the three years since we’re meant to have eradicated these kinds of places is starkly made by Sara Ryan in today’s Guardian. She describes such units as “waste bins of life”.
Sara’s son Connor Sparrowhawk (aka Laughing Boy or LB) died a preventable death last year in a Southern Health NHS unit, and the widespread outrage that followed created the Justice for LB campaign with the related 107 Days drive, and draft disability rights legislation in LB’s name, the LB Bill.
It’s hoped that a green paper in February next year will reflect some elements of the bill.
Disability and human rights barrister Steve Broach, who is helping to draft the bill alongside Connor’s parents (Sara Ryan and Richard Huggins), Mark Neary and George Julian, says the project is using social media to galvanise a diverse community, including people with disabilities, professionals, families and academics. “We’re trying to crowdsource changes to the law – people are patronised and it’s wrongly assumed that disabled people and their families cannot understand their legal rights,” says Broach.
Kevin Healey, campaigner for autism rights who has supported three of the families mentioned in the piece today, says that people are effectively “penalised for having a learning disability or autism”. He says the successful campaigns to return people home are vital, but rare.
Healey adds: “It’s like we’re going back to the days of the 1940s when people with autism used to be institutionalised, but this is the 21st century.” Healey warns that where the authorities return people home, it is important to protect and preserve any new community-based packages of care amid the sweeping welfare cuts.
One mother, Leo Andrade-Martinez, told me of the son she is campaigning for (Stephen has been moved 80 miles away from home and restricted to a two-hour weekly visit from his parents) that “no one should suffer like this”.
Her words are horribly familiar to anyone interested in disability rights.
Amazing, incredible, inspiring…overused words but I found myself unable to avoid using them when describing my meeting with the pioneering psychologistJanet Carr, who has just finished the world’s longest study (50 years) of people with Down’s syndrome. Carr’s life’s work has been a commitment to changing attitudes about learning disability, and in particular Down’s syndrome.
As I explain in an interview published in The Guardian today, Carr’s longitudinal study began with 54 babies born in the year to November 1964 and living with their families in a part of south-east England. Carr’s aim was to establish the children’s educational needs using intelligence tests such as pattern-matching. The research, which began when the babies were six weeks old, was conceived by the Medical Research Council psychiatric genetics research unit at London’s Maudsley Hospital. It was initially intended to last just 10 months but the young researcher wanted to look longer term and explore family interactions.
“I thought, as well as looking at how the little people are, I’d like to look at how it affected their families. It was widely accepted that having a baby with a disability meant that it would be a disaster, that families would break up. That’s what I expected to find,” she recalls. In fact Carr discovered that, while the babies’ development was slower than their non-disabled peers, families coped well as the children grew, with youngsters bonding and developing good relationships with their brothers and sisters.
You can read the rest of my interview with Janet Carr here.
Really enjoyed talking to the brilliant actor Sarah Gordy for today’s interview in The Guardian.
As I explain in the piece, the established theatre and television professional, who has Down’s syndrome, is breaking new ground by playing a character without a disability.
She has just appeared in Manchester play Crocodiles, combining this with charity work, including as Mencap’s first celebrity ambassador with a learning disability, a role she took on a year ago.
If Gordy looks familiar, it’s because she’s already starred in high-profile BBC roles in Call the Midwife and in Upstairs Downstairs as well as being involved in the Shifting Perspectives exhibition, an annual project from the Down’s Syndrome Association, where she posed for the striking portrait below, entitled After Vermeer (and I blogged about the exhibition here).
Sarah Gordy in ‘After Vermeer’, shot by Richard Bailey
As Gordy told me, “I’m just a normal person who lives a normal life.” You can follow Sarah on Twitter @sarah_gordy
The Middlehaven Festival in Middlesborough on Saturday 23, run by care specialists Keiro, builds on the success of the Chase Park Festival in Gateshead (the Gateshead event was established by Paul Belk; Belk, who has used a wheelchair since his brain injury, was supported at the Keiro rehabilitation centre that lent the Chase Park festival its name).
Middlehaven offers level boardwalks and wheelchair access, specialist toilets, hoisting and changing facilities, a hearing loop and a sensory “chill out” area and on-site medical services.
The images here, taken from last year’s Chase Park Festival, give you a flavour of what to expect- and what other venues and events should aspire to. For more information, check the Middlehaven website and Attitude is Everything, which works with the live music sector to improve access for deaf and disabled people.
Music festivals and accessibility: image from the Chase Park Festival 2013
* This is the last Social Issue post till September as the blog takes a summer break.
But that concept is being turned joyfully on its head via a heart-shaped door, a “tunnel of love”, mirrors, multi-media installations and a healthy dose of cheeky humour on London’s Southbank this summer.
Wayne, Heart n Soul’s Tunnel of Love
The theme of love, as perceived by artists with learning disabilities, is explored in arts organisation Heart n Soul’s latest venture at the Southbank Centre.
I’ve blogged and written articles before about the arts charity’s collaborative, awareness-raising, thought-provoking and frankly bloody good fun events and projects. Its latest move, Tunnel of Love, part of the Southbank’s Festival of Love, gives a conceptual nod and a wink to the fairgrounds of yesteryear – and it is more of the inclusive, stereotype-shattering same stuff that the arts outfit has a reputation for.
According to the London-based organisation, Tunnel of Love “raises a rare opportunity to consider a notion that seems to put society back in the 60’s once again: our attitudes to how people with learning disabilities conduct personal relationships and develop sexual behaviour”.
The Fish Police perform at a recent gig
On Wednesdays until the end of August, Tunnel of Love will also feature live performance from a host of Heart n Soul artists, there are sessions from the likes of artists like singer Tilley Hughes (pictured) and the project includes the chance to catch three-piece band The Fish Police (pictured). For full information, check the Heart n Soul website.
The festival and related events run until the end of August and the charity’s annual club night multi-media extravaganza, the Beautiful Octopus Club will be back at the Royal Festival Hall on Saturday 6 September for the sixth year running.
Women in Croxteth, Liverpool, discuss the impact of cuts on communities, part of the research for the new book, Austerity Bites
Do you know what austerity really means?
Here’s a definition from the Collins Dictionary, as quoted in Mary O’Hara’s commanding new book on the subject, Austerity Bites: “…difficult economic conditions created by government measures to reduce the budget deficit, especially by reducing public expenditure: a period of austerity/austerity measures.”
But that literal definition, and the words of politicians using the rhetoric of austerity to mask the harsh impact of public spending cuts, conveys nothing of the human cost of the unprecedented reform of the welfare state.
Austerity Bites redresses that imbalance. I don’t usually do reviews on this site, but this timely book demands attention.
Reading this book means you join the award-winning journalist O’Hara in her “journey to the sharp end of cuts in the UK”. Based on a 12-month trip around the country meeting diverse people affected by cuts as reforms were introduced in 2012 and 2013, O’Hara gives a platform to untold stories of hardship.
O’Hara’s book suggests, “austerity” has become an acceptable rhetoric, one that glosses over the harsh impact of welfare reform – as in “cuts hurt but in the age of austerity, what else can we do?” The creeping normalisation of food poverty and food banks, as explored in this book, is shameful.
While an intricate explanation is given of the political and economic context, it is the lives of those whose voices are rarely given a platform – the homeless, the disabled, the young among them – that are the focus here.
Crisscrossing the country, the picture is one of political classes living in a “bubble” untouched by the harsh reality of life on the front line of Austerity UK; a massive chasm between the people suffering from the impact of cuts and abolition of vital benefits and the people making the decisions to abolish that support.
People talk of “breaking point”, “existing not living”, their “desperate situation”; the book does much to explode the myth of benefit Britain. A fairly comprehensive catalogue of unfairness is chronicled in Austerity Bites – the disabled, for example, are shown to be bearing the brunt of cuts, the vulnerable are made more vulnerable and the poorer become poorer.
As one man, Dec, who O’Hara meets on a Luton estate tells the author: “Do I deserve better? Do other people deserve better? I think they do.”
Unsettling, but vital, reading, this book lays bare the real, true story of austerity.
Lisa Johnson of the writing group Story Balloons (pic: Jonathan Raimondi).
Lisa Johnson is a writer. The 30-year-old from Sheffield recently had a book published, a collection of poems, songs and stories put together with fellow authors from her writing collective. Today she will take part in a workshop in her home city, explaining the creative process and encouraging others to write.
She says of Story Balloons, her weekly writing group: “It is something I look forward to.” Uptown Boy, her poem about love, she adds, makes her feel “very happy”. “I always wanted to write,’ she says, adding that writing has changed her: “I feel more confident, proud of what I’ve achieved.”
Story Balloons helps counter stereotypes and improve confidence, and has led to a published book – read more in my piece in the Guardian
If it is rare to see learning disabled people interviewed or mentioned in the mainstream media (unless they’re involved in a care scandal), then it is completely unheard of to see someone with a learning disability conducting an interview.
Which is why I’m posting these images of Shanna Lau and Jermaine Williams who visited Channel 4 last month (to coincide with the local and European elections) to interview Jon Snow. The news anchor talked about accessibility in the news and voting and their interview is published today in the bi-monthly Easy News, the first accessible news magazine for people with learning disabilities which is supported by United Response.
Shanna Lau and Jermaine Williams at Channel 4 news
Shanna and Jermaine are part of the team that produces the magazine; launched last year, it uses simple words and images to create easy to explain big news stories and help people engage with current affairs and politics.Stories include the death of Nelson Mandela, the Winter Olympics and Paralympics and the 2014 Budget. By the sixth edition, 3,272 people had downloaded it – 250 per cent over target. According to United Response, 90 per cent of readers say it is easier to understand than other news sources while 78 per cent feel politics is now relevant to their lives, compared to 31 per cent a year previously.
L-R, Shanna Lau, Jon Snow and Jermaine Williams at Channel 4
Jon Snow told Easy News: “I think sometimes [news is] happening in places in the world that [people] have never heard of…And it’s very difficult to explain to people in a short space of time – because you only have a very short time in the news – it’s very difficult to give them all the facts. And sometimes you need a lot of facts to understand what a story is all about.
“I certainly think that [news can help people to vote]. If you are able to simplify it, which we very often do not, we assume a level of understanding which often isn’t out there. But I think if you can simplify it, it will make it very much easier for people to vote.”
An easy read version of the full interview, which was set up by United Response with help from disability campaigner, Kaliya Franklin, is in the ninth edition of Easy News published today. To download the latest edition of Easy News and to sign up for future editions, go to the United Response website.
