Tag Archives: learning disability

“I am valuable. I can still shine and I will still go on”

Gold, from Bound, Anthony David King and Samona Naomi Williams
‘Gold’, from Bound, Anthony David King and Samona Naomi Williams

Huge lashes sweeping over her eyelids, face framed by diamante and skin shining gold, this is a photographic portrayal of how Samona Naomi Williams feels some days: valuable, not a burden to society.

Yet Samona, a wheelchair user who Ehlers-Danlos syndrome (EDS) type 3 which, amongst other things, affects her mobility, also has days where she feels trapped by her condition, vulnerable and delicate. Outwardly, on some days, she may show little sign of her disability. This is reflected in a portrait where she is bound to her chair with tape emblazoned with the word ‘fragile’.

Fragile, from Bound, by Anthony David King and Samona Naomi Williams
‘Fragile’, from Bound, by Anthony David King and Samona Naomi Williams

Then there are times, she recalls, referring to a shot of her on a mattress strewn with medication, that her bed is a “marshmallow prison”: “There is no rest for me here. Yet I’m tied to it. I’m bound to it. There’s nothing sexy about being bed bound, though I wish to see it differently.”

Bed, from Bound, Anthony David King and Samona Naomi Williams
‘Bed’, from Bound, Anthony David King and Samona Naomi Williams

Samona has turned her experience of disability into an art project, Bound, documenting her story with photographer friend Anthony David King. The pair recently exhibited the works at the Brick Gallery in east London and the pieces are available to view online at Saatchi with an exhibition tour of London planned for later this year.

Until her diagnosis in 2009, Samona was a TV, music video and film producer, producing and directing a short film screened at Cannes. With her condition, she felt she had “nothing to give”: “I was just this ‘disabled person’. I cannot write, I cannot do my films, I cannot work – that’s when Anthony and I sat down and had a discussion about what can I do to use to use my skills and illness. We came up with photographic project which we could make work around my disability.”

Anthony, who met Samona as a student, adds: “When she became ill, the impact on me as a friend, seeing her go through this…I could see she felt she didn’t have much to offer. We decided to do something together, an opportunity to do something not just for her but to tell her story that may be encouraging to others, looking at ways we could express her experiences.”

Samona’s condition means that everyday tasks – taking a shower or making a cup of tea – can be difficult. She uses a wheelchair when she goes out due to weakness, dizziness, a heart condition and pain when she walks. She often suffers fortnight long “crashes” where she remains in bed, exhausted and in pain. She describes these episodes as “being crushed by bricks”.

Yet the images are bold and provocative – Bed and Gold, for example, portray an attractive woman. Samona adds: “I may be sitting there [in bed or in the wheelchair], but in my head, I’m imagining something else, a feeling of fantasty. I was keen to get away from any stereotypical views that are out there; this is something that we don’t talk about – I’m still a woman…I know lot of people living with illness and we can infiltrate popular culture and can present beautiful images.

“Disability in the media is about benefit culture, it’s a negative thing, and also a lot of the time I feel people [without disabilities] cannot relate to disabled people, they have one of two reactions – they look away or they overcompensate. But we are just normal people who have an illness – it does not change you as person. I can’t get up every morning and do my hair but it doesn’t take away the desire to be who I am and who I was before. We all suffer from some kind of weakness and vulnerability; some wear it on the outside and some on the inside.”

The project, says Samona, also stemmed from a desire to draw attention to the lack of support for disabled people and how the current welfare reforms are a threat to vulnerable people.

Samona, who has home care, adds: “It is important, especially after the Paralympics, to keep attention on disability – not say ‘well, the Paralympics was a positive thing, and now let’s move on’…we are not miserable people who don’t want to work and who are in chairs and who are a burden on society.” She worries about the government cuts. “Of course they pick on the most vulnerable members of society, most disabled people are suffering.. it’s difficult to get out of bed some days, let alone write a letter to make a complaint. They kick you while you’re down.”

The artists stress that their exhibition portrays the the challenging side of Samona’s experience, but has a positive message. “The full set of images we shot try to keep a balance of reality – so the truth is that there are great moments and we tried to show that in images like Gold, Samona still has something to offer, still a valuable person,” says Anthony.

Samona explains the story behind the shots above:

Gold:
“When I realised that I wasn’t going to recover easily, quickly or perhaps not at all from this illness, I didn’t know what to do. I had so many dreams and goals and suddenly it felt as if I would no longer be an asset to this world. I was going to be a burden. A burden to my family, a burden to society, incapable of contributing anything to anyone. I sat and contemplated this new existence, I felt completely worthless and couldn’t really see the point of carrying on, I may as well end it, I thought. However the caterpillar struggles through its cocoon before it can become a butterfly and a rock undergoes immense pressure before it becomes a diamond. I slowly began to see this illness as less of a torment and more of a metamorphosis, a struggle into something greater than I was before. I saw my worth in a different way. I could still contribute to my family and I still have so much to give to society. How? By allowing myself to be me regardless of this illness and realising that rather than being worthless, I am worth more than ever before. I am valuable. I can still shine and I will still go on.”

Fragile:
“I sometimes wish I were wearing this fragile warning tape when I go out in the wheelchair so that people would heed the signage and treat me delicately. Being in a wheelchair means you are exposed and on show and people often have reactions, judgments and lack consideration. They may see you as an inconvenience or worst still behave like they don’t see you in a clumsy and nervous fashion. In my case, people behave confused ‘what exactly is wrong with her’. I see their questioning and it feels almost accusing sometimes, ‘You’re not really disabled.’ ‘You don’t look ill’. Imagine how that makes me feel. The physical pain is enough but this is coupled with emotional pain whenever I go out. I feel the need to explain, ‘Hey, I might look ok but I’m suffering every day’. I am broken physically and mentally and I wish people would understand. It would be easier if I could just wear the tape.”

Bed:
“I have found a new relationship with my bed. It’s like a marshmallow prison, necessary, uncomfortable, restricting and binding. It’s where I spend most of my time, in complete agony and pain. I feel restless, unable to sleep and too weak to stay awake. It’s a mind- numbing, agonizing, maddening experience being unable to move from the bed. Despite its billows of softness, feathered stage and relaxing countenance, it is not the pleasure pen that I wish it could be. There is no rest for me here. Yet I’m tied to it. I’m bound to it. There’s nothing sexy about being bed bound, though I wish to see it differently.”

* See the Bound website for more information or find Anthony and Samona on Twitter

Pertti, punk and pedicures

Pertti Kurikka's Name Day, a film about punk rockers with attitude
Pertti Kurikka’s Name Day, a film about punk rockers with attitude

“I need a little respect and equality in my life”

“Decision-makers are cheaters, they suck..they don’t give a sh*t about us disabled”

“I don’t want to live in a group home, I don’t want to live in an institution”

“They make promises in Parliament and break them every day”

Not the words from a campaign against welfare cuts or disability rights, but lyrics from a Finnish punk band whose learning disabled members star in a new film and are about to embark on a UK tour.

The Punk Syndrome, already being shown in selected cinemas and out on DVD next month, is a documentary about the band Pertti Kurikka’s Name Day (see the trailer with subtitles at the end of this post).

The documentary by filmmakers Jukka Kärkkäinen and J-P Passi follows the members – Pertti Kurikka on guitar, Kari Aalto, vocals, Sami Helle on bass and drummer Toni Välitalo – as they record, fight, find love and gradual fame. Guitarist Pertti, who lends his name to the group, composes the music and writes the lyrics with vocalist Kari. The band members’ learning disabilities include Down’s syndrome and autism.

Kari, left, and Pertti
Kari, left, and Pertti

The film bills itself as painting a “frank, edgy and funny portrait of the individual band members” and you can believe the hype; this is one film that does what it says on the tin.

It is warm, refreshingly raw, poignant and laugh-out-loud funny. Watch out for some awkward issues around personal hygiene, a comically honest complaint from one musician to another that the music he’s writing is, well, a little too difficult to play, and an al fresco gig in a shopping area where the audience, pensioners included, is encouraged to “wave your hands in the air like you don’t give a f..”.

This isn’t a portrait of vulnerable people undergoing music therapy (although, even the band originated through music therapy workshops, does it matter if the end result brings their story and their experiences as adults with learning disabilities to light?) but charts the bust ups and the brotherly respect between the musicians (although there’s more of the former than the latter).

My favourite song? The one about one band member’s trip to the pedicurist, a regular event that inspires an angry song. On one level a darkly comic diatribe against yet another appointment that has to be kept, on another, a spitting rage against a lack of choice and control; being forced to do things you don’t really want to do at times when you don’t really want to do them.

Pertti and his band members
Pertti and his band members

The band was formed in 2009 in a workshop arranged by Lyhty, a non-profit organization that provides housing and education services. The group came together on punk fan Pertti’s name day [the tradition of celebrating the day associated with your given name] the band’s name was born. Pertti won the silver medal in the Nordic countries’ street organ championships in 2008.

As for Pertti’s fellow musicians, Kari is into motorcycles and has a girlfriend who he one days hopes to move in with. He hates group residential living, a sentiment he puts into his lyrics: “I live in a group home in Töölö, but I don’t like it because the area is too quiet. People in Kallio are nicer and there are record stores and bars.” As he says in the film: “Everyone has the right to make a decision about where and how they would like to live.”

Bass player Sami, a volunteer campaigner with the political party he supports, lives in the same group home as Kari. Toni lives with his parents who want him to move into group living, but he wants to stay at home.

Pertti, who describes touring as “terribly lovely” says he has been surprised “to see how many people dig us and say ‘Hey, that band plays damn well.’ We played a gig and they really liked our band.”

If anything, I’d have liked to have known more about their families, a bit more about the process that brought them together, but that would have been a different film. Cinematographer J-P Passi, has said of the documentary: “I hope that our film will show people that these people shouldn’t be though of as defective or inadequate, but rather as individual and complete human beings. I’d like the audience to see them as people who lack certain knowledge and skills but also lack the ability to act destructively against other people.”

To borrow Pertti’s words when he describes his band, this is one “kick-ass” documentary.

* The film is playing in selected venues, see the list of screenings here.

* If Pertti Kurikka’s Name Day and the film are of interest, then check out Stay Up Late, founded by the band Heavy Load. The Brighton charity brings disability arts to the mainstream and advocates for the rights of people to lead the lives they want to. Stay Up Late’s gig buddies scheme, for example, gets people with and without learning disabilities going to gigs together through a love of the same music. You can also check out this link to a documentary about Heavy Load.

Panto and parity

Happy New Year – and seeing as we’ve just had panto season (oh yes we have – sorry, couldn’t resist) here’s one fairy tale I wish would come true: Once upon a time, in a land far away, people who have a learning disability face don’t face discrimination, prejudice and abuse.

In reality over the last few weeks alone there have been comments from a former UKIP candidate that that mothers carrying foetuses with Downs syndrome or spina bifida should be forced to have abortions and someone from Mensa (the organisation for intelligent people) making what I can only describe as an unintelligent comment describing people with low IQs as “carrots”.

While my fairy tale sounds far fetched, there is at least a happy story emerging in the theatre sector, where venues and theatre groups are trying to be more inclusive of “non-mainstream” audiences.

Although theatre arts have long and well-documented therapeutic links to learning disability, what’s often lacking is understanding on the part of audiences and venues, as has been reported and and as I’ve had the personal misfortune to find out.

Which brings me back to panto, the latest theatrical genre to benefit from the burgeoning growth of the relaxed performance (see my last post on this back in October ).

You’d have thought that the slapstick shows, with their badwy humour, audience participation and rolling-about-it-the-aisles atmosphere is just about as informal a theatre experience as you can get, but even pantos can do with a more understading attitude to audiences that are different. Not only that, but often the noisy environment of panto is a huge challenge for people with sensory issues – you might want to take part in the family experience, but need time out to gather yourself if you feel overwhelmed.

Relaxed performances are aimed at families with children with autism or learning disability. There’s a more relaxed attitude to noise in the auditorium (staff receive training from the National Autistic Society) and before the show, audience members get detailed information and photos or might attend a “familiarisation meeting” in the theatre and make use of a chill-out zone during the performance.

Ambassador Theatre Group (ATG) announced pilot plans for relaxed pantomimes last year. Hopefully ATG will judge the scheme to have been a success and will embark on a relaxed panto performance at one of its West End theatres later this year.

My sister Raana had a great panto experience recently – it wasn’t because of the show itself, or because it was a relaxed performance (it wasn’t) but it because of how she was treated outside the auditorium, not just in it. A “relaxed performer” and understanding and accommodating staff, in fact, made all the difference.

My mum took Raana to see her hero, singer Noel Sullivan (onetime member of reality TV pop group Hear’Say) peform in panto at the Hawth Theatre, Crawley. Raana was desperate to meet him; for 10 years or so she has listened to his songs, watched him on YouTube, seen his shows, always talked about meeting him but never quite plucked up the nerve to try, even after waiting backstage after a show.

She had a stage door opportunity once but bottled out at the last minute – as our teenybop hero turned musical theatre performer emerged from the exit, off Raans scampered down the road, leaving my 60-year-old mother brandishing a mug as a gift and an awkward smile.

But, hey presto, the long-awaited meeting finally happened in December, thanks to some understanding members of staff who accommodated her request (replying promptly and sensitively to my mother’s telephone calls) – and to an understanding performer who gave his time to a painfully shy, awestruck, silent, nervous, overexcited fan just minutes before the curtain went up. Her wish was granted and she was incredibly proud of “her moment”.

My sis surely isn't going to meet her idol in panto? Oh yes she is!
My sis surely isn’t going to meet her idol in panto? Oh yes she is!

This time, despite the palpable anxiety, fidgeting and refusal to eat (nerves) she actually managed to meet him. As usual, my mother was prepared for her daughter to feel so overwhelmed that she’d throw up – despite this being something Raana desperately wanted to do. But it speaks volumes for my sister’s determination and self-possession that she waited patiently to meet him (I know we’re not quite talking about an audience with the Pope but with a man in pancake make up in Crawley – but the fact is she had this dream, and it was fulfilled).

Relaxed performer: panto fan Raana backstage with Aladdin, aka Noel Sullivan.
Relaxed performer: panto fan Raana meets Aladdin, aka Noel Sullivan.

Even weeks later, she is still buzzing from the experience, still mentioning to anyone who’ll listen (actually, even if they don’t listen) that she’s met her idol, still waving around her laminated (yes, for posterity) A4 colour copy of the photo of Noel posing with her.

This was, undoubtedly, her equivalent of Mission to Lars – only not quite as transatlantic, nor epic in scope, arduous in execution nor indeed as hardcore musically (just as well; I’m struggling to picture my mother at a metal gig).

This is what she said immediately afterwards (thanks to my leg man of a mum for taking down her verbatim words afterwards): “I met the biggest star in the world – couldn’t believe it was him! I got two big hugs from him and he posed for two photos with me. I was very happy to meet him. He is still my favourite!” (By the by, she is now planning her next meeting with him, rather than treating this as a one-off miracle, it’s boosted her confidence in the theory that her dreams can come true).

While the theatre in Crawley isn’t part of the relaxed performance scheme, general manager Dave Whatmore says that if someone needs a carer or companion – through having a visual impairment, learning disability or using a wheelchair – ticket concessions are available.

He adds: “Over the years staff have received training courses to raise their awareness of disability in general – although autism awareness as a specific training course hasn’t been offered, we’d certainly consider something for the future if it were available.” The theatre already hosts events for children with learning disabilities, working with Crawley council’s arts development team on organising inclusive events.

So while it’s heartening to see that the official relaxed performance drive is gathering apace, it’s also worth noting the difference that can be made through individual actions, good old fashioned customer communication, courtesy and simple awareness and understanding.

As for the days of people with learning disabilities being frowned upon in mainstream theatre, let’s hope they’re behind us (panto pun fully intended).

* For more information on accessible shows and venues, you can also checkout the Time Out with Netbuddy listings or follow @timeoutnetbuddy on Twitter

Bricks and mobility: buildings and disability history

Carved stone hands reading braille, on the exterior of the former Royal School for the Indigent Blind, Hardman Street, Liverpool. The Grade II listed school was built in 1850 (pic: English Heritage)
A gap in a church wall speaks volumes about the history of disability in England; lepers’ squints allowed people with leprosy to see the pulpit and hear the service through a small chink in the stonework, without coming into contact with the congregation.

Images of churches with lepers’ squints are among hundreds included in a web-based project launched today by English Heritage. The Disability in Time and Place resource encourages the public to understand changing social attitudes to disability via England’s architecture and shows the influence of disability on the built environment.

Eleanor House, Buckinghamshire, the Epilepsy Society, opening ceremony 1896 (pic: Epilepsy Society)

As Rosie Sherrington, policy adviser at English Heritage says of Disability in Time and Place: “In essence we can track disabled in and out of the community and back in again by looking at the range of buildings they inhabited.”

The image-led project features institutions and landmarks, among them the Le Court Leonard Cheshire Home, often taken as the first meeting place of the disability rights movement where Paul Hunt began campaigning with other residents in care. The pictures are from English Heritage’s archive and also draw on historical images lent by the charity’s partner organisations.

Disability in Time and Place is being launched at the Graeae Theatre, Hackney (among the country’s leading fully accessible theatres) this afternoon with speakers including Tara Flood, ex-paralympian and director of ALLFIE (the Alliance for Inclusive Education), and architect and access expert Dr David Bonnett, whose pioneering work includes the refurbishment of the Royal Festival Hall.

Guild of the Poor Brave Things, Braggs Lane, Bristol (pic: Brave and Poor Ltd)

Among the places featured is the Guild of Brave Poor Things in Bristol (above), the first meeting places for disabled self-help groups. The visual history also includes the Liverpool School for Indigent Blind, opened in 1791 by Edward Rushton, who was blind. Rushton’s school was the first in Britain that aimed to give people the skills to be more independent.

Other sites featured are churches designed for deaf congregations such as St Bede’s Church in Clapham and St Saviour’s in Acton, both in London (the latter is still used as a deaf church). They have dual pulpits, one for the chaplain and one for the interpreter, as well as bright lighting and raked seating to boost visibility.

English Heritage’s web resource is divided into six sections, each taking a specific historical period – the Tudors or the early 20th century, for example – and looks at the building types associated with it.

Sherrington adds: “In the medieval period we have the idea that disability was a direct consequence of mankind’s sin, and therefore a religious matter. However disability as a result of disease such as leprosy was widespread, and an ordinary part of everyday life. It was not understood in the same way as we see it today.”

Moving onto Tudor times, she says, much of the care provided by monasteries and the church was destroyed during the dissolution, having disastrous consequences on the lives of disabled people. Paradoxically, Henry VIIIs “fools” were people with learning disabilities paid to entertain the court. It was a privileged role and they were thought to have divine wisdom.

“The 18th century saw the idea of disability being a matter of physicality rather than morality,” according to Sherrington, “and providing for the disabled became a matter of civic pride. As such many private asylums and enormous hospitals for the war disabled (like the Chelsea Pensioners) were built.”

With the rise of asylums and workhouses, disabled people were hidden away (although Sherrington adds “ this was though of as a positive move enabling disabled people to receive the ‘treatment’ they needed”). With the 20th century came the attitude that many people had incurable conditions (Sherrington draws our attention to the rise of eugenics “and the perceived need to separate those who were ‘healthy’ from those believed to be ‘inferior’”). But then two World Wars resulted in the notion of “heroic disabled” and the emergence of memorial villages and specialist rehabilitation hospitals.

According to Baroness Andrews, who chairs English Heritage, the project “is a history of the nation’s buildings and of a significant proportion of our population which, until now, has gone unexamined and untold. It is the part of the history of every town and city, with the schools, chapels and hospitals which surround us all each day but it has remained invisible and silent.”

English Heritage worked with a disability history steering group which included disabled employees, disability history academics including Jan Walmsley from the Open University’s Social History of Learning Disability Group and Dr Julie Anderson from the University of Kent who specialises in war disability. Partners included ALLFIE (the Alliance for Inclusive Education). Other sources of advice, information and images include the Greater Manchester Coalition of Disabled People, Disability History Month, the Centre for Disability Studies in Leeds, Leonard Cheshire, the Epilepsy Society, New College Worcester. All the content has been translated into British sign language videos by deaf interpreters.

* English Heritage has also updated its, Easy Access to Historic Buildings, available to download.

Learning disability charity needs your vote in e-card competition

Okay, so it isn’t yet December, but can you really look at this this frosty little fellow and fail to feel even a tiny bit festive? He’s just one artistic entry in the charity Netbuddy’s Christmas e-card competition

The charity, which runs an award-winning website and online community for parents, carers and learning disability professionals, invites people to vote via its Facebook site for the design they think should be its e-card for 2012, and the image on Netbuddy’s Facebook site withe most “likes”, wins. All the artwork has been created by children and people with learning disabilities.

The deadline for voting for the seasonal greeting e-card is 10 December and the winning artist will receive a chocolate hamper. Here are some of the other entries – click here to see them all and vote for your favourite:

Bums on seats? Not in a “relaxed performance”

Imagine an actor delivering a monologue in the complete opposite of a quiet carriage. Imagine audience members coming and going as they please throughout the show, standing up, sitting down, and making as much noise as they want. Forget bums on seats, this is bums being allowed to wiggle on seats, shuffle, fidget and move. And neither cast nor crew can protest.

It sounds like every actor’s worst nightmare – and every learning disabled theatre-goer’s absolute dream.

The scenario is pretty much what the cast and crew at the National Theatre are expecting on Saturday as the venues holds its first “relaxed performance” of Mark Haddon’s The Curious Incident of the Dog in the Night-Time.

It is the perfect antidote to the treatment meted out to some families – I speak from (unpleasant) experience with my sister and recall the fate that befell 12-year-old Gregor Morris last year and many more besides.

The atmosphere in the auditorium will be relaxed to provide “a more supportive environment”, as the NT says of the laissez-faire attitude to audience behavior. The theatre has provided “visual stories” to anyone coming to the performance – essentially support material to help people know what to expect from the visit.

The Curious Incident of the Dog in the Night-Time, Paul Ritter as Ed, Luke Treadway as Christopher Boone (photo: Manuel Harlan)

Crucially, there is to be no change in the content (why should an audience member be patronised or cheated on the drama simply because he or she has a learning disability?) and the play,
adapted by Simon Stephens, has not been 
specifically adapted for the special performance. As the NT puts it, despite the relaxed atmosphere, “this play is most suitable for those who will enjoy a narrative-driven performance”.

Luke Treadway as Christopher Boone and Niamh Cusack as Siobhan (photo: Manuel Harlan)

The theatre already runs audio-described and captioned performances and free touch tours for the visually impaired, but the new venture is the first of its kind for the venue.

Ros Hayes, the NT’s head of access, explains why it’s been launched: “We’ve watched the pioneering work on relaxed performances done by theatres like the Unicorn and West Yorkshire Playhouse with great interest and admiration and are now taking the opportunity to run a pilot relaxed performance. It’s something we’ve been wanting to introduce for some time and Curious spurred us into action.”

Given that a persistent cough or a rustling sweet wrapper is, in most theatres, an eyebrow-raising offence and not a ringing mobile phone could have you ejected faster than you can say “out damned spot”, how is the cast preparing for the distraction that a relaxed performance will inevitably result in? Hayes adds: “We’ve been working with a consultant with experience in this field and she will fully brief the company about what they might expect and how to handle any interruptions (many of the cast visited schools with pupils on an autistic spectrum in preparation for the play).” Crucially, it’s not just actors who are signed up to the idea: “Our box office and front of house teams have also been fully briefed.”

Hayes explains that the video, sound and lighting teams will adjust the effects for the performance – for example, softening and reducing lighting, sound and other special effects. The cast is rehearsing with these adjusted effects and adjusting some of their moves, so they don’t move too closely among the audience for example.

Interestingly, the NT is keen to encourage more performances for adults along these lines. Comparatively speaking, there is much more provision in the theatre and arts sector for children with special needs or disabilities – the Unicorn and special autism-friendly film screenings, to name but two, and I recently came across a learning disability-friendly panto via East Kent Mencap too.

Hayes says: “Curious Incident, although suitable for 13 years upwards, also very much appeals to an adult audience, so we are really keen to see if we can make this work successfully for an older age group. Put simply, we want as many people as possible to be able to enjoy our shows, whatever their needs.”

Encore. Definitely encore.

* The NT’s next relaxed performance, Hansel and Gretel, will be on Saturday 19 January 2013

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 week..here’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.

Buddies: social skills for children with special needs

Mason Milne takes part in schemes that boost his social skills and confidence (pic: Dimensions)

Making eye contact is difficult for Mason Milne, who has autism, and making friends is even harder. Yet the 11-year-old has met both challenges while at a special needs holiday club near his home in Colchester, Essex, over the last year.

“He’s come out of himself,” says his mother, Mandy. “He’s made a friend at his club and we’ve noticed how he will come up and speak a little more.” Mandy, 47, and husband, Gordon, 48, meanwhile, get some respite from caring, reassured that Mason is enjoying activities like swimming or roller skating.

Read more about how the Buddies programme for youngsters with learning disabilities and autism goes beyond providing respite care on the Guardian website.

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