Tag Archives: disability

Puck, peppermint and posh frocks (again)

As it’s Fragile X Awareness Day, I wanted to re-post this poem about my sister, Raana. I wrote it for Mencap’s blog and as a hearty nod to the fantastic film Mission to Lars which I also wrote about for the Guardian.

Fragile X is the most common cause of inherited learning disability in the world – but my sister’s a rare character, as you’ll read here.

My sister, Raana
My sister, Raana

The Fabulous Raana Salman

What does “puck off” mean, you asked,
When a playground jibe you misheard,
It’s an insult, we said, with a bittersweet laugh,
And “puck” is quite a rude word.

You’re older now, and more in the know,
And you’re still just brilliantly funny,
We love how you call my other half “bro”,
And our mother is always called “mummies!”

You constantly amaze us with all that you do,
You garden, you cook and you bake,
You’re a music fan who likes her tunes loud,
Full volume – bloody early – at dawn break.

You love Chinese food and movie nights in,
And sometimes the pub if it’s near,
Remember your fury when we ordered you juice,
And you indignantly cried: “I want beer!”

“You’re fried!” you shout, knowingly wrong,
After watching The Apprentice on telly,
You say it when angry or to make us smile,
And it shows you’ve fire in your belly.

You’re creative and busy and do stuff we can’t,
You’ve woven and painted and grown,
I love having you stay so you’re able to see
How your art brightens up my home.

You’re thoughtful with gifts, matching present to person,
(You know I like peppermint tea)
We joke how “mummies” foots the bill sometimes,
And you say of your gifts: “They’re for free!”

You love baggy sweatshirts, they comfort and cloak,
You categorically refuse a posh frock,
You know your own mind, you’re fabulous and kind,
And basically Raans, you rock.

Follow the hashtag #FragileXAwarenessDay on Twitter to find out more about the syndrome, or try the Fragile X Society and Mission to Lars.

Groundbreaking gigs for artists with attitude

Punk band PKN
Punk band PKN
Shouty, sweary, noisy chaos, big stage personas, a self-proclaimed kick-ass attitude, loud drums, screeching guitars and songs about fighting and sex.

That this is a description of two punk bands currently touring the UK will hardly come as a shock. But the bands confound expectations in other ways; the gigs by Pertti Kurikan Nimipaivat (PKN), from Finland and Zombie Crash, a Brighton heavy metal band, represent the first time that two learning disabled bands will tour the country.

I’ve blogged before about PKN, the band is as likely to write lyrics arguing for respect and equality as it is to sing about avoiding trips to the pedicurist or to complain about residential care homes.

The four date tour, which began on Tuesday, is funded by the Arts Council England and organized by, Constant Flux, an arts organisation that provides opportunities to learning disabled musicians.

Richard Phoenix, who runs Constant Flux, explains: “Often when I talk to people about working with people with learning disabilities in music I encounter the “Aww…. That’s so nice” attitude, which isn’t intrinsically wrong in any way but it seems to me to represent a feeling that people with learning disabilities are only capable of emotionally neutered art, of things that are ‘nice’ and ‘happy’ which from my experience is completely off the mark.

“This tour is a perfect example to present people with something that totally challenges those perceptions, nothing about the bands music or performance is going to be ‘nice’ in any way shape or form. There will be shouting and swearing, with songs about not wanting to live in residential care, demands for respect and equality, songs about fighting, songs about sex.”

Richard says that the musicians’ uncompromising attitudes musical ability will shatter the stereotypical view of what people with learning disabilities can achieve, “this in turn will hopefully help positively affect attitudes toward those with learning disabilities”.

The fact the bands are touring is a vital part of the project, adds Richard. “Touring is something which is such a huge part of what it is to be a musician and being in a band, but for so long it has been extremely difficult to achieve within the learning disabled music scene because it can be such a financial and logistical nightmare.”

Kalle, who supports PKN, sums up the band’s gung-ho attitude: “They’re feeling very excited about this. They are used to playing gigs in tight schedules but never done this tight… but they don’t think about it. They love going abroad, even though some of them don’t really know, or care, where they are globally.”

Ryan, lead guitarist and vocalist with Zombie Crash, offers this response to the tour: “Metal unleashed from the learning disabled community! It means the ultimate activity for any band to put themselves through, to go on tour, to be as active as you possibly can. The fact that we’re doing this in the month of October and Halloween is the perfect timing for us to unleash hell!”

The fact the tour has promoted as a regular event – rather than as simply a “good cause” – should help “create situations where people with learning disabilities at a gig is normalised, where it’s not unusual or exceptional”, says Richard.

On a practical level, the touring musicians have to be supported. “Making this tour viable for learning disabled artists involved ensuring that, as vulnerable adults, the musicians were supported properly,” explains Richard, “so there are 22 of us on the tour, 10 band members and various members of support, some people require one-on-one support, there are members of creative support and musical facilitation, drivers and myself managing the tour.”

Safe, reliable accommodation has been booked in advance each night, unlike in the DIY touring network where you play a gig and don’t necessarily know where you’re staying that night. “The Arts Council was so important in making this whole thing happen…we’ve been able to book everything in advance and ensure that as much risk as possible is removed, also it has taken away the dimension of the tour being a success in a financial sense and has created a situation where it can be judged on it’s artistic merits.”

One interesting byproduct of the tour planning is that it has created debate about how best to promote the gigs. Richard adds: “The main question that is asked is that if the music can stand on its own then why does the element of disability have to come into the equation? There definitely is weight behind this argument, however in discussion with several artists with learning disabilities and parents and carers of artists, the over-riding feeling is that it is more important for these artists to be strong, empowered representatives of a largely under-represented and marginalised section of society.”

• The remaining tour dates are today, October 3, at Sheffield at Heeley Sport and Social Club (with Skiplickers and Amarous Dialogues) and Friday, October 4, in Brighton at The Green Door Store (with Good Throb and The Soft Walls). Both venues are accessible with accessible toilets and prices are £3 (carers free/donation only).

• Listen to more PKN on Soundcloud

Fetes, fundraising and firsts

Raffle ticket seller Raana Salman at the Lantern Community open day
Raffle ticket seller Raana Salman at the Lantern Community open day
I’ve never thought of my sister, above, as a saleswoman – she can be engaging, encouraging, persuasive and talkative, but she’s never actually sold me anything other than an idea (usually about what film to watch; invariably a Bond movie).

So my family and I were impressed – and proud – to see Raana in marketing mode (above, resplendent with pot for raffle ticket cash) for the first time on Saturday (scroll down for a gallery of snapshots).

We spent the day with Raana at a fundraising fete and open day at the Lantern Community in Ringwood, Hampshire, where she lives and works.

Raana, along with some of her peers, formed a veritable raffle mafia – but not only was parting with cash in a good cause, it was impossible to say no when the ticket sellers assured you “this one’s a winner!” (this was clearly a sales spiel – neither I nor anyone in my family won a single thing…).

The open day in the Lantern’s grounds – with flowers, plants and fruit and veg in early autumnal bloom, stalls, food and live music – marked the opening of a new house, Silver Birches, for adults with learning disabilities. The day was also a celebration of the charity merger between the Lantern and Seahorses. Seahorses is four-star holiday accommodation on the Isle of Wight run by, with and for people with disabilities (as well as for those without) – a B&B with a bonus, as I explained in a recent Guardian piece.

From the fruit, vegetables and plants on sale and display to the bakery produce and the range of arts and crafts including pottery and woodwork, the day showcased the talents of a creative and inspiring group of people. And one of them, running from stall to stall with a book of pink tickets and a broad smile, refusing to stop to chat to me (“I’m busy! I’m working!”), was my saleswoman of a sister.

Talking to my eight-year-old daughter about the fact I was going to blog about our day with Raana, she immediately suggested a title for the story. It’s so neat and accurate, I think it rounds off the post and sums up the event perfectly: The Lantern Stars.

Here’s a small taster of a very successful day:

Thrill seeker James leads beach accessibility campaign

Beaches are no barrier for James Smith

If you’ve spent any time on a beach this summer, you’ll know that a wheelchair isn’t a common sight on the sand. Unless, that is, the wheelchair belongs to 16-year-old James Smith, above.

James, who has duchenne muscular dystrophy, is, according to his family “a bit of a thrill seeker”. Tomorrow, coinciding with National Paralympic Day, James will steer his high-tech, all-terrain wheelchair through a sandy obstacle course in Tynemouth to raise awareness about beach accessibility.

James Smith in his all-terrain wheelchair in Tynemouth
James Smith in his all-terrain wheelchair in Tynemouth

Saturday’s Longsands Beach Challenge – what organisers say is the first ever beach wheelchair event of its kind – will see disabled and able-bodied participants negotiate a beach-based race circuit.

North Tyneside council has given permission for the event to take place and is supporting the “beaches for all” campaign. The aim is to have power beach chairs available for loan at the beach all year round.

The event is being organised by two companies, Dolphin Lifts and Mobility and Shape Adaptations. Shape director Stephen Smith is James’ father – he was inspired to organise the event by his son.

The free event runs between 10am-4pm on Saturday with races on the hour and prizes for the winners.

* A separate event in London tomorrow marks a year since the Paralympics; artist Rachel Gadsden (whose powerful, awareness-raising work has previously featured on this blog) and artistic director and choreographer Marc Brew present a free new show for National Paralympic Day and Liberty Festival at the Queen Elizabeth Olympic Park. The show is called Cube of Curiosity.

From the Cube of Curiosity performance
Image from the Cube of Curiosity

Image 2 - Version 2

An invisible population: older people with autism

A resident of Hinnerup Kollegiet, a Danish community of older people with autism (pic: Hinnerup Kollegiet)
A resident of Hinnerup Kollegiet, a Danish community of older people with autism (pic: Hinnerup Kollegiet)

Timothy Baron was among the first children in the UK to be diagnosed with autism just over 50 years ago. Timothy was in need of specialist education but autistic children then had no right to schooling, so his father, Michael, opened his own school, the movement became the Society for Autistic Children – now the National Autistic Society (NAS).

That was the 1960s; today, Timothy, who lives in residential care, is nearing 60. The first generation of children to be diagnosed with autism is now moving into older age. Ageing with autism brings not only the particular challenges of the condition – communication, social interaction or sensory issues – but the social, physical and mental health issues often experienced in old age.

Policymakers are aware of the impact on society of the ageing population, but the same focus has not been given to people with learning disabilities and autism.

Read the rest of my piece about the need for more work on autism and growing older in the Guardian’s social care pages.

Lizzie: people should see me with no limits, no barriers, no name tags

Lizzie in the studio
Lizzie in the studio

It’s no surprise that soul singer Lizzie Emeh has called her forthcoming second album See Me: “I want people to see me and accept me as I am. I want people to see me as a disabled person with no limits, no barriers, no name tags. I want to inspire other people with disabilities, for them to say– if she can do that, so can we. People with disabilities are always told, you can’t do this, you can’t do that. I want to change all that!”

Lizzie became the first person with a learning disability to release an album in 2009, now she hopes to complete her second, breaking new ground by using crowdfunding to produce it. Lizzie’s first album, Loud and Proud, took three years to make, produced with the support of arts organisation Heart n Soul, which she is still working with.

Lizzie, who was never expected to walk or talk following complications at birth, has performed at Number 10 and at the London 2012 Paralympic Games Opening Ceremony. She is hoping for more donations ahead of her crowd funding deadline for donations on Saturday – this week has been the final push for support. You can find out more and see Lizzie talking about her work and what her second album means to her here.

Singer Lizzie Emeh

Heart n Soul’s long-running multimedia club night Beautiful Octopus takes place on Friday 13 September on London’s Southbank, with live performances, DJs and “interactive zones” where the audience can participate in the music, dance and other art-related events and activities showcased.

* To donate to Lizzie’s campaign for her second album, see this link

Tailor-made technology: systems and support in social care

Julie Heightley was so worried about her son Thomas suffering an epileptic fit at night that for two years she slept on a camp bed outside his room. The broken sleep and constant supervision of Thomas, who has autism and global developmental delay, was adversely affecting both Julie’s role as a carer and any prospect of independence for her son.

I came across Julie and Thomas’ story while researching a new report published today by the Voluntary Organisations Disability Group and the National Care Forum.

Now, thanks to a discrete network of wireless sensors dotted around the four-bedroom family home just outside Wolverhampton, Julie and Thomas, now five, are enjoying what Julie calls “a new lease of life”. Since the home was kitted out with the assistive technology two years ago, Thomas has been able to safely play and walk about the house independently without needing his mother’s 24-hours-a-day supervision. As well as having a slightly more hands-off approach to her five-year-old, Julie, a lone parent, has more time to spend her two older children who are in their teens.

Julie and Thomas with his older siblings
Julie and Thomas with his older siblings

Assistive – or personalised – technology includes a wide-range of supportive but unobtrusive services and equipment, from personal alarms for elderly people, to seizure monitors and more sophisticated fingerprint recognition systems that allow you to open the door without keys. It can also include computer software, hand held devices or video call systems that increase social interaction and family contact.

As fans of such services and systems point out, the traditional view of this technology is that it involves a medical and prescriptive approach (see the comments on the related VODG blogpost), but the key issue is to bring it to the consumer market, widen its use among the general public and raise awareness about its potential.

As the publication stresses, the social care sector has embraced a huge amount of innovation in assistive technology, using new methods to complement the physical work of support staff. it is transforming lives for the better. But the use of such services, systems and equipment does not enjoy the higher profile of our counterparts in the health sector, despite the fact it is entirely in line with the “person-centred” approach that care providers are working towards and encourages choice, control and independence – social care watchwords.

Today’s report, with its real life stories of how technology is transforming the lives of vulnerable people, aims to change that: “Put simply, technology is part of our modern landscape. We use it for work, leisure, at home and on the move. It makes our lives easier. People with life-long disabilities or age related conditions should share that experience, benefitting from the advantages that tailor-made technological support can bring.”

* Read more on the VODG website and download the report Using assistive technology to support personalisation in social care

The artists redrawing our perceptions of disability

Bengali Welcome, by David Constantine

Photographer David Constantine – he’s the creator of the arresting and uplifting image above, Bengali Welcome, above – has a theory as to why his subjects relax once they’re in front of his lens; his wheelchair breaks the ice.

Constantine’s work is being shown as part of the inaugural Bloomsbury Art Fair that opens today at the Goodenough College, Mecklenburgh Square, London. As well as works by popular artists Banksy and Damien Hirst, there are pieces for sale by new and emerging artists. The three-day charitiable event raises money for spinal injury-related charities.

Constantine, for example, began taking pictures as a teenager and sold his bike to buy his first camera. While on a working holiday in Australia in 1982 he broke his neck in a diving accident and became quadriplegic. Paralysed from the shoulders down, he gave up photography for a year. But while he wasn’t able to pick up his camera, he continued to “see” images. As he writes on his website: “During that year I realised that I was still ‘seeing’ pictures, choosing images in my head even to the point of deciding on film types and composition I would use for a particular shot. The only thing I lacked was the physical ability to use a camera. I realised that this was a ridiculous reason for giving up and all it need take was some adaptations to my camera and wheelchair to enable me to take pictures.”

Exactly a year to the day of his injury he began the process of taking pictures again. He travels with his work for Motivation, the international disability charity he co-founded, and his main subjects are people in their own environments. As he says, “the disadvantages I foresaw with my photography after becoming a wheelchair user have turned into advantages.” He has developed different skills and enhanced others: “I am so conspicuous that it has made me bolder, I am happy to go and ask someone for their picture. If I can’t communicate verbally I make it very obvious that I would like to take their picture, people make it quite clear whether they are happy for me to photograph them or not.”

Love, by Sophie Morgan

Among the participating artists is Sophie Morgan, who was runner up to Britain’s Missing Top Models. Morgan had a car accident in 2003 that left her paralysed and in a wheelchair for life. Her beautiful piece, Love, is above.

Morgan’s website declares that she is (in this order) an “Artist, Portraitist, Writer, Arts Psychoth