Category Archives: Disability

Fragile X on film: how Mission to Lars could change attitudes

Meher Salman
“Oh really? But she’s so good at dance” was the response of an acquaintance who misheard my explanation that my daughter Raana has fragile X syndrome – she thought I’d said “fragile legs”.

Amusing though this incident from a few years ago is, it demonstrates how few people know about fragile X, the most common form of inherited learning disability estimated to affect at least 1 in 4000 males and 1 in 6000 females.

It is European fragile X awareness day next week, Wednesday 10 October, and the aim is to raise the profile of the syndrome in 16 countries across Europe.

Above, Kate Spicer and her brother Tom at a concert in the fragile x film Mission to Lars (photo: Mission to Lars)

I recently went to a screening of the film Mission To Lars, which features a man with the syndrome as its central subject, and I didn’t quite know what to expect.

But in fact all of us who are affected by fragile X can identify with this film in so many ways. The main reason I feel it’s such an important film is that it raises awareness of fragile X in a touching and moving way.

Tom’s obsession with Lars reminded me of my daughter’s obsession with the singer Noel Sullivan which began after she watched Popstars, the 2001 reality TV show that he was featured in. Even now she’ll mention him randomly in conversations, imagining what song he’ll be singing, or incorporate him in doodles, and likes to look up his latest show on the internet.

On the plus side, her obsession gives her something to talk about and do (from printing off photos to flicking through show brochures) and it’s definitely sparked an interest in musical theatre and music. The flip side is that she constantly repeats herself when talking about him (“when are we going to see the show?”) and it’s totally removed from reality.

The scenes in the film which show Tom hesitating to meet the drummer he hero-worships reminded me of the time when Raana went to see her own idol in a West End show but then got cold feet and refused to go backstage to meet him. I was left standing opposite him – he’d very kindly come out to say hello to her – holding a mug she’d made for him in a pottery class while Raana ran to the other end of the pavement, waving shyly.

Another striking similarity was when Tom relaxes when, during the filming, he “helps” with sound recording. Raana also feels more comfortable when she has something to do, like helping with cooking when the whole family’s together. She likes to have a role rather than feel like a spare part.

The relationship between the three siblings (the love and support Kate and Will give their brother Tom was very touching) reminded me of the relationship between Raana and her two older sisters.

What moved me most was Tom’s bravery and how he overcame his anxiety. Routine is very important to people with fragile X and for him to leave his familiar surroundings and travel hundreds of miles on this adventure was admirable.

If you see the film, it’ll give you a better understanding of fragile X and of how it affects not only the individual, but the family dynamics and siblings. For people who have a FX member of family, it makes you feel are if you’re not alone. Watching some of Tom’s reactions, I couldn’t help but think “I’ve been there”.

Although I saw Mission to Lars before the Paralympics, the summer’s sporting events did make me hope that more people would be more aware of disability and learning disability issues, and people’s attitudes should change for the long-term. Films like Mission to Lars will help bring about this change.

Who dares, swims…

July 1984, a Sussex school swimming gala; my 12-year-old self is poised above the sunlight-dappled pool, ready to slice through and glide under the surface like an elegant water nymph.

Sneaking a glance at my competitors, I’m surprised to see them positioned to dive rather than bottom-shuffle off the edge (my trademark style). I can’t really dive. Ah well, arms aloft, knees bent – how hard can it be?

Whistle goes and I spring like a bird through the air..and hit the water horizontally – a plank of wood thudding onto a sheet of thin ice. The impact sends globlets of water over the spectators and shots of pain into my middle. Struggling to regain composure I lumber through the water, more walrus than swan, before finishing 10th. Out of 10.

For the first time in 28 years since that belly flop, I’m bracing myself for a competitive swim.

Water good cause: we're swimming for learning disability charity Netbuddy

My friends and I (collectively known as the Merladies) are taking to the water in October, leaving the keyboard and going overboard, making a splash to raise some cash (donate and we’ll stop the crap puns) in aid of a very good cause, a Dares challenge for the learning disability charity Netbuddy

As the sibling of a (very fabulous) sister with a learning disability, the kind of support Netbuddy offers would have been invaluable when we were growing up.

Our aim is to zip through as many lengths as possible in half an hour and improve that total every week this month.

Merladies? Because we’re too mature to be mermaids. Swimming? Apart from the chance to redeem myself, my recent jaw op means my surgeon’s banned me from anything more hardcore than flailing about in a pool. Otherwise we’d be halfway up Everest. Obviously.

We began our splash for cash this’s how it went:

Week one of the big lather household (anyone got a decent water-related Big Brother pun please?) and my fellow fundraiser Dr Ruth Evans, aka Evans the Eel, joins me at the water’s edge.

Eel bemoans the fact she was always in the ‘bottom swimming group’ at school (bottom stroke – new Olympic sport, sounds kinda fun!) but hopes to rise like a phoenix from the flumes, er flames, with the Netbuddy challenge.

I, meanwhile, am looking forward to what will be the most exercise I’ve done in the fortnight since my jaw op (apart from flexing a bicep to mash chocolate cake into easily digestible clumps).

And we’re off! Eel does indeed power through the water and – ah the indignity – swaps from my slow lane into the fast one.

30 minutes later, we’ve totted up 1500m – China’s Sun Yang set a new world record at London 2012, taking 14 minutes to do the same distance so really, by my, um, scientific reckoning, we’re halfway to matching Olympic record! Huzza!

* See our fundraising page for more info and how to donate to our charity challenge, any amount, no matter how small, would be very much appreciated.

A perspective on the Paralympics

Singer and rapper Dean Rodney, part of the Games Through Our Eyes website
There’s no shortage of media coverage of the Olympics and Paralympics, but one new online platform offers a unique and important perspective on the games.

Games Through Our Eyes is an accessible website for the 2012 Paralympic Games created by young reporters with learning disabilities. The team is supported by arts group Heart n’ Soul and social enterprise communications agency Poached Creative.

Games Through Our Eyes is covering wheelchair rugby, the three Paralympic sports open to people with learning disabilities (swimming, athletics and table tennis) as well as the Cultural Olympiad. This year is first time in 12 years that people with learning disabilities have been allowed to compete after Spain’s basketball team faked their disabilities in the 2000 Sydney games.

The reporting team includes Dean Rodney, a 22-year-old singer and rapper with autism whose audio-visual project, the Dean Rodney Singers, is part of the Cultural Olympiad. Dean, who has honed his performing talents through Heart n’Soul and who I’ve blogged about before, is part of the Unlimited showcase at London’s Southbank Centre starting today. Unlimited is staging cultural events alongside the Paralympic Games, having made major new commissions in disability, arts, culture and sport (for artist Rachel Gadsen’s contribution to the Cultural Olympiad, for example, see this previous post).

As far as the new website goes, Lilly Cook, one member of the reporting team, says the aim is for everyone with disabilities and learning disabilities “to be able to find out about them and all the other amazing things going on around them.” As Lilly adds in a recent blogpost: “Paralympic sports are just as exciting, professional and emotional as the Olympics.”

Alongside Lilly and Dean, the other reporters are Nicola Holley, Poppy Collie, Shalim Ali, and Laura Jarvis.

Expect some good coverage of Dean’s installation; the Dean Rodney Singers is an international digital collaboration of 72 musicians and dancers with and without disabilities from countries including Japan, China, South Africa, Germany, Brazil, Croatia and the UK. Their online interaction results in new music, dance and video and 23 of their pieces will be launched at the Southbank Centre today, with audience participation promised through interactive technology (the idea is viewers and listeners engage with the performers).

As well as the Dean Rodney Singers, other Heart n Soul artists perform in events during the Paralympics – the fabulous Lizzie Emeh at the Trafalgar Square Live Site this Sunday – fresh from accompanying Beverly Knight at the Paralympics opening ceremony – and The Fish Police (which Dean Rodney also fronts) at the Potters Field Live Site on Monday. The arts group’s spectacular multi-media club night The Beautiful Octopus Club (created by and for people with learning disabilities) is on Friday 7th September at Southbank Centre, the final weekend of Southbank’s Paralympic Games celebrations.

Keep up with the news on Twitter by following the Games Through Our Eyes team at @ourparagames

Sticking plasters, surgery and spending reviews

A damp squib of a sticking plaster, or what health secretary Andrew Lansley has said is the “most comprehensive overhaul [of social care] since 1948” and an end to the care lottery?

Most early reaction to today’s long awaited care and support white paper and its associated draft bill is firmly on the side of the former view.

I’ve yet to read all the detail, but while there’s a much-needed focus on elderly care, there’s not enough of a recognition for other sections of society needing care and support, and nothing to plug the funding gap.

As Merrick Cockell, chairman of the Local Government Association, told Radio 4’s Today programme this morning: “We haven’t got time to tinker around…We’ve got to look at radical change.” The LGA has said there is a £1.4bn gap this year between the money available and the cost of maintaining social care services. There’s a good run down of the council perspective on the LGC website and while this post from Ermintrude2 was written before the publication of the white paper, it’s a really good explanation of the issues.

While today’s announcement picks up some from the Dilnot report (Dilnot suggested a system for the elderly where the total cost of care would be capped to £35,000 and support to old people should be extended to those with assets of £100,000), any “victory” for common sense and civil society is bittersweet because it fails to lacks the cash to make real far-sighted change a reality. The proposals might well show good will, but there’s no financial way (this piece relates to the vision for social work, which could be undermined by the lack of cash).

It is, as shadow health secretary is quoted in the Guardian’s politics live blog as saying, “a pick and mix approach to the Dilnot package”. So the government hasn’t taken up the “once in a lifetime opportunity” that Dilnot mentioned when he launched his vision of how to fix the social care system.

Among today’s main points are plans for an optional social insurance scheme under which people pay the government premiums to ensure that their costs for care and accommodation are capped, and a “universal deferred payments” system where councils lend money to those needing care, then recover the cash when the house is sold after death. Sound sensible – perhaps even familiar? That’s because it’s already in use – around 9,000 people already used deferred payments.

Today’s government press statement suggests we watch this space: “The government will continue to work with stakeholders to consider in more detail variants under the principles of the Dilnot commission’s model, before coming to a final view in the next spending review.”

Having already waited with bated breath for today’s long overdue white paper and draft bill, it’s unlikely that many will hold it much longer.

Here’s a flavour (by no means a comprehensive round up) of reaction on Twitter and the web to today’s social care white paper:

Richard Humphries, senior fellow at the King’s Fund: “There is a financial vacuum at the heart of these proposals which undermines the bold and ambitious vision for a reformed system set out in the White Paper.”

Julia Unwin, chief executive of the Joseph Rowntree Foundation: “Successive governments have failed to act. Without a sense of urgency more of us face insecurity and uncertainty as we age. The failure to address social care properly will only mean more pressure on the NHS thereby destroying all hopes of a sustainable and functioning health system in the future.”

Clare Pelham, chief executive of disability charity Leonard Cheshire Disability: “It is a question of fundamental decency that disabled and older people should be able to live their lives with dignity in Britain in the 21st century. We hear a great deal about the need to support older people through dignified social care, but it is important that the needs of younger disabled people are not overlooked.”

Mark Goldring, chief executive of Mencap:”The social care system is in crisis. Years of underinvestment and cuts to services have left one in four adults with a learning disability literally stuck in the home, isolated and at risk, with family carers at breaking point and scared about the future…We are reassured to see that the Government has committed to fund immediate reforms, but this promising blue print will never get off the ground if it fails to address the chronic underfunding in social care. The Government cannot delay any longer, and must now outline an urgent plan of how it intends to fund social care reform in the long term.”

Carers UK chief executive Heléna Herklots: “The measures set out in the draft Care and Support Bill would move from piecemeal carers’ rights legislation to the establishment of carers’ rights in government legislation and, for the first time, equalise carers’ rights with disabled people rights…But to make these rights a reality, what carers also need is a social care system with the resources to overcome years of chronic underfunding and rapidly growing demand. Those who face soaring care bills, service cuts and a daily struggle to access even basic support from the social care system, may see new rights in legislation as empty promises without the funding to back them up.”

David Orr, chief executive of the National Housing Federation: “We’re pleased the White Paper recognises that housing is crucial to the integration of health and social care, and welcome the investment to build more supported housing for older people and younger disabled adults…We need a health service that invests in services that keep people out of hospital, not one that simply treats them when they get there….the Department of Health needs to encourage local government and the NHS to pool budgets, focus on housing-based preventative services and set out its full proposals for the funding of social care – for today and for tomorrow.”

Nick Young, chief executive of the British Red Cross: “That the Government is accused of failing to address the social care crisis is no surprise. The scale of the funding problem is enormous and growing. It will take courage, creativity and tremendous degree of political will to solve. That isn’t going to happen overnight.”

Reaction on Twitter using hashtags #carewhitepaper, #ukcare and #carecantwait (also check out ‏@sim89 Storify‬ compilation of early responses):

@ageuklondon Though it contains some good ideas, the #carewhitepaper doesn’t go far enough. The problem of care will not go away and is getting worse!
‏@Sensetweets Deafblind people continue to be abandoned, as funding fails to materialise – our response to the #carewhitepaper
‏@TonyButcher #carewhitepaper – like excitedly looking forward to your birthday but then only getting a cheap pair of Primark socks – disappointing
‏@gary_rae If this is a “watershed moment” for #ukcare then we’re clearly drowning. #carecantwait #dilnot
‏@Marc_Bush Care crisis demanded decisive action. Today we got a holding statement…’ @scope rspnd 2 @DHgovuk ‪#carewhitepaper‬
‏@WoodClaudia focus on deferred payments in ‪#carewhitepaper‬ due to absence of other funding ideas. It is option for some, not THE solution being proposed
@Ermintrude2 Disappointed that headlines about #carewhitepaper all seem to concentrate on selling houses to pay for care. System about so much more.

“People aren’t cases, they’re individuals”

Debbie Walker is “a guardian angel”, according to Julie Mason, whose 86-year-old mother, Elizabeth, has Alzheimer’s.

Two years ago, when Walker, a Sheffield Council care manager, met them, Elizabeth’s care involved daily agency staff plus Julie and her sister as unpaid carers. The family felt Elizabeth lacked choice and control, spent a lot of time with nothing to do and had little social interaction. Read the rest of my piece on how one council is letting external organisations lead on support planning on the Community Care website.

A support planning session at Sheffield city council (pic: Sheffield city council)

Art fights social taboos

Living with chronic health problems and facing social taboos are issues at the heart of an international artistic collaboration about HIV/AIDS as part of the Cultural Olympiad.

Portrait by Rachel Gadsen © Rachel Gadsden

© Rachel Gadsden

The powerful images here are part of the Unlimited Global Alchemy project
which launches today as part of the London 2012 Festival. After today’s launch at the Museum of Archaeology & Anthropology in Cambridge, the exhibition culminates at the Southbank Centre during the Paralympic Games.

The project has been produced by Artsadmin and commissioned by the Unlimited programme launched to celebrate arts, culture and sport by deaf and disabled people.

© Rachel Gadsden

Artist Rachel Gadsden, who has lived with disability all her life and whose inspiring work I came across last year, began the project after seeing the work of South African artist Nondumiso Hlwele at the museum in Cambridge – Body Map, below, reflects Hlwele’s experience of living with HIV.

Body Map © Nondumiso Hlwele

Gadsen travelled to the Khayelitsha Township, Cape Town, pictured below, to collaborate with the artist-activist collective which Hlwele leads. The works in today’s exhibition were created over a six week residency in Cape Town in October last year.

Khayelitsha township where today's works were developed

Together, the striking pieces show what it’s like to live with disabling conditions and social prejudice. “At the heart of this life-affirming and timely collaboration is a celebration of survival against the odds,” say the artists. “It is also about access to art in a very broad sense, participation, and the potential for bridges to be built across cultural, educational and geographical divides.”

You can follow the project on Twitter with the hashtag 
#UGAlchemy and the exhibition is at the Museum of Archaeology & Anthropology in Cambridge until 18 August before it transfers to the Southbank Centre, London in September as part of the Unlimited Festival. There will also be a collaborative performance work once the project transfers to the Southbank.