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).
The central character, Matty, is played by Nathan Bessell, the playwright Sue Shield’s son. Shield’s semi-autobiographical story, about the peaks and troughs of bringing up her child, aims to present a real picture of parenting a young person with a learning disability.
Originally performed at Bristol’s Tobacco Factory Theatre, Up Down Boy is on national tour from September to November, starting with a relaxed performance at The Shed at the National Theatre tomorrow.
The premise is that Matty’s imminent departure for college sparks mixed emotions in his mother: “You’ve got to stop living on Planet Matty. You’re going away. You’re going to have to live in the real world”
As Shields has said: “The day we were told our son had Down’s syndrome we felt like the bottom had dropped from our world. I have now found from my own experiences that having a child with special needs gets you straight to the back of the queue, and that the special needs are often blatantly ignored. I found then that I had a choice – sink or swim. Stand up and fight for what I believed to be rightfully his or stay at the back of that line and accept what was handed out to him. I think too much of him to let this happen.”
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).
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.
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.
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 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.
How many people aspire to be ordinary? Success is usually defined success as standing out from the crowd, being the focus of attention or doing something extraordinary.
But Shairaz’s wish is different.
Shairaz wants to be regarded as ordinary because, as he says, he and his peers are usually regarded as scroungers or superheroes.
Shiraz, who has a learning disability, says of the stereotypical perception of disabled people: “We shouldn’t only be portrayed when we do something amazing or something bad. We should also be portrayed when we are doing ordinary things. Most of us are not scroungers. It’s the government that has decided to offer us support, it’s not us begging. Many people can’t work and that’s not their fault, we shouldn’t be called scroungers.”
Shiraz is taking part in a new campaign launched today by the social care charity United Response. Along with a survey and a new report on attitudes to disability, there is an art project and exhibition from next week, Postcards From The Edges which focuses on the everyday lives and achievements of disabled people (see the examples on this page, view more on the charity’s dedicated project site and via this Guardian gallery).
The survey, report and artworks coincide with National Paralympic Day on Saturday, marking a year since the Paralympics – but the event’s impact may be fading, according to United Response’s survey. The aim of the survey, report and art project is to transform how the public sees disabled people.
For example, two thirds of the 1000 people surveyed say they see more disabled people in the real world than in the media, while four out of five say that the public does not know enough about disability.
While the research shows the Paralympics was a memorable event – Ellie Simmonds’ four gold medals is named as the best memory by 31% of respondents – less than one in five of respondents could name a disabled person who has become well-known in the year since the Paralympics. Meanwhile, 40% found it difficult to name a well known physically disabled person and only one in five could name a person with a learning disability.
The postcards, many of which will be showcased in an exhibition at Bankside Gallery in London, complements this research. The charity asked people – well-known or “ordinary”, with or without disabilities – to write or draw cards in any creative style. The only proviso was that the card design in some way responded to the question: “What do you want to tell the world?”.
United Response has collated the cards over the last eight months and the results – more than 550 pieces of art – are a snapshot of thoughts, hopes, fears, ambitions and everyday experiences of a wide range of people. There are submissions from older people with mental health needs, parents of children with autism, people with physical disabilities, children and social workers. Among the postcard designers are Paralympians Hannah Cockroft and Dame Sarah Storey, Olympian Sally Gunnell, Suede singer Brett Anderson and actor Emma Thompson.
The report from the charity’s campaigns panel (which Shairaz is a member of) underlines the messages from the survey and the art project. The publication, Superhumans or Scroungers, reveals the gap between the portrayal of the superhuman Paralympians and media coverage of disabled people.
“We shouldn’t be portrayed in just one light, as superheroes or scroungers,” says Shairaz about the report. “People should know more about our lives overall… I would just like to see us portrayed more as ordinary people. Yes we’re special in some ways, but so is everyone. It would be good to see television not just concentrating on our disability but on who we are and what matters to us, like the place we live. That would give everyone a chance to learn from different experiences and that might help everyone to stop generalising.”
The aim of the report and panel, Shairaz adds, is “to make people more aware of what disability is about…A lot of people have the wrong impression of people with disabilities. They think disabled people are all the same and should be classed under one branch. They don’t understand hidden disabilities, like my mental disability. A lot of people think that people with mental disabilities are crazy or stupid, but that’s not true.
“People make assumptions because they don’t understand. So I think the panel is about helping people understand and also telling them that we have rights and views and opinions. Our opinions count as much as able people’s opinions.”
The report stresses that media coverage of disability tends to focus on people with physical disabilities, meaning that people with learning disabilities, autism, mental health needs and other hidden disabilities are “almost invisible”.
Shairaz and his fellow campaigns panel members also worry about the growth in news stories about welfare with, as the report states, a simplistic representation of disability creating “a polarisation of who is ‘deserving’ or ‘undeserving’ of support”. The report explains, “it means there is very little attention given to ordinary disabled people or the positive contributions that they make”.
The postcards project ties into this, says Shairaz, because it offers people a wider vision of disability and of the achievements of disabled people in a positive, creative way. He adds: “It’s also good to tell people your experience, but nice to do it in a fun way… Life isn’t always serious and spilling your heart out. When people ask about my life I don’t say “Oh, I just mope about and feel sorry for myself”, I say I have fun too.”
Su Sayer, United Response’s chief executive co-founded the organisation 40 years ago when it was the norm for people with learning disabilities to be hidden away in large institutions. She adds: “While the last four decades have seen huge changes for many people with learning disabilities, there is still widespread prejudice and lack of understanding from the broader public. Many people still don’t understand much about disability or the lives of disabled people, let alone their achievements.”
Sayer adds that the two extremes of how disabled people are portrayed – lionised as superhuman or criticised as scroungers – is “far, far from the reality of the overwhelming majority of disabled people today…’ordinary’ disabled people are still very absent from public life”.
Shairaz agrees. “It’s important to know that it’s not just the people who can do great things at sport who are important,” he says. “Everyone is a hero in themselves. My girlfriend says I can be a hero sometimes, because of the support I give her.”
* The Postcards from the Edges exhibition opens at Bankside Gallery in London on Tuesday 10 September and runs until Sunday 15 September. It will be followed by a showcase at the Sage in Gateshead (1- 4 October), the Grant Bradley Gallery in Bristol (private view on the evening of 23 September) and the Camp and Furnace Gallery in Liverpool (4-10 November).
* Find out more about the project by visiting the Postcards website.
Public transport – by definition involves “buses, trains, and other forms of transport that are available to the public, charge set fares, and run on fixed routes”. While the network is meant to be for the use of the general public, a significant section of that population – people with a learning disability – faces challenges when using the system.
While people with a physical disability are often literally unable to get onto vehicles, someone with a learning disability might be physically capable of stepping onto a train, but might find the system as a whole impossible to negotiate.
My sister, for example, likes using buses, trains or Tubes but it would be impossible for her to safely work her way round any of those modes of transport alone; her anxiety would leave her rooted to the spot and she’d be unable to cope with making sense of the numerous changes and confusing timetables..multiple folded leaflets, tiny print, lots of abbreviations..forget it, it’s difficult enough for the rest of us, let alone someone with Fragile X syndrome. So her journeys are accompanied or she’s driven from A to B by us but for other people with learning disabilities, there are not many other options for getting about.
Take Kevin Preen, without public transport, he says he would be “stuck in doors all day”. Kevin, 52, has a learning disability and Perthes’ disease, which led to a hip replacement when he was seven-years-old.
Kevin is supported by and is a peer-advocate for Oxford-based learning disability charity My Life My Choice (he has also represented Oxfordshire’s learning disabled community at the National Forum). He is now spearheading a travel and transport campaign for My Life My Choice during Learning Disability Week, which starts today.
The 52-year-old, who is currently awaiting an Atos assessment for work capacity, adds”: “Without public transport…I could make a few short journeys a week by taxi but I couldn’t afford to do much.”
His awareness-raising mission, known as the End to End trip, involves Kevin and a fellow peer advocate, Michael Edwards, travelling by train from John O’Groats to Lands End to highlight the importance of public transport to learning disabled people amid the cuts.The social exclusion often faced by people with learning disabilities is being exacerbated by the cuts as day services close and public transport becomes even more important in boosting people’s independence.
Kevin adds: “It will be a new experience. I’m getting excited about meeting people on the train and raising awareness of how important public transport is to people with learning disabilities”
Kevin and his fellow “transport champion” Michael will stay in B&B’s and hotels along the route with travel passes issued by train firm First Great Western. Accompanied by the charity’s champions coordinator Dan Harris – who will be capturing their journey online – the aim is to record the good and bad aspects of the trip. Dan adds that even if the experience involves getting on the wrong train, “as long as it isn’t going to seriously impact our journey, it would be good to capture that and explore the challenges that led to the mistake”.
Michael, 59, who has very limited vision, epilepsy and a learning disability. He lives with his brother who acts as his carer. Michael helped found the self-help charity and is a trustee of My Life My Choice. He says: “Trains bring me a lot of pleasure. I have been planning my own routes and taking trips as far away as Devon for 15 years. I’ve been watching trains on platforms since 1967…I like trains, I’ve got myself a hobby.”
According to the charity, among the main travel issues faced by the people it supports is the difficulty in being unable to understand timetables and dealing with confusing platform changes. Kevin, for example, once ended up getting on a train heading for Penzance instead of his home area of Oxford because of making a wrong platform change. Another major problem is that of bullying on public transport.
Bus and train drivers are also not always aware of the needs of disabled passengers. Just last month, for example, Jackie, who is also supported by My Life My Choice was travelling independently on a bus. On boarding, the driver asked her to reverse her wheel chair into the disabled space, but didn’t give her time to reverse before moving off. The jolt as he pulled away meant Jackie’s jacket got caught and tore. She pressed the bell well in advance of her stop but the bus driver didn’t stop until she was past where she wanted to get off (he told her she hadn’t pressed the bell well enough in advance).
The End to End trip schedule takes in Glasgow, Manchester, Swansea and Paddington before arriving in Land’s End on Sunday August 25th. In each place, the travel champions will meet local learning disability organisations.
My Life My Choice hopes to publish an easy read document about learning disability and public transport as a result of the End to End campaign and you can follow the trip on Twitter.
* More information about the trip can be found on the charity’s website and you can view a gallery of photographs about the trip here here.
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.
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.
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
Under the proposals, victims of miscarriages of justice like Gerry Conlon, one of the Guilford Four, or Mark Neary, who fought his local council’s decision to send his son into care 300 miles away from home, would never have brought their cases before the courts.
Legal aid, and the individual’s right to challenge authority and unfair decisions is a bedrock of the British legal system, often described as “the envy of the world“. Dismantle that foundation, and, as the people and families I spoke to for today’s piece make clear, you increase the likelihood of wrongful convictions and greater unrest among the prison population, and you give the authorities carte blanche to bring in sweeping changes (to welfare, for example) with impunity.
The government’s Transforming Legal Aid proposals include new competitive tendering of solicitors’ contracts and a fixed fee system which, say lawyers, will preclude many from bidding for work and force them out of the market. The government will also prevent prisoners from using legal aid to challenge their treatment inside (see the words of ex-offender Leroy Skeete in the Guardian piece to see what effect this could have) and a new residency test will withhold legal aid from trafficking victims or those recently arrived in the UK who suffer domestic abuse.
Justice secretary Chris Grayling is due to give evidence this morning to the justice select committee regarding the price competitive tendering proposals in his Transforming Legal Aid consultation.
As reported, Grayling has said in a statement: “I have always been clear this is a genuine consultation and I will continue to listen to views.” (He may listen – but will he act on what he hears?) He may be dropping his plans to remove defendants’ rights to choose their own solicitor but, while the safeguarding of choice is welcome, that choice is useless if the pool from which to chose dries up. In addition, if the system is so restricted under the changes that would-be claimants don’t get permission to launch appeal cases anyway, they won’t even get as far as having to make a choice.
Below are two more testimonies which explain just what a difference legal aid makes – and what would happen if the changes go through:
Blessing (not her real name), 36, a domestic worker from Nigeria:
“My employers hadn’t paid me properly, or paid any tax, for the nine months I worked for them. I was paid £250 a month and worked seven days a week. I never had rest days or fixed hours. They called me to work at any time. I normally started working at 7am and would work until after 11pm as my employers would return home late and expect me to cook for them.
During the day I looked after their children and cooked and cleaned. At the weekends I also had to clean my employers’ business. It was hard work and I had no life of my own.
Legal aid helped me to go to court for an employment tribunal and win. I won my claim to be paid the national minimum wage for my work.
Without legal aid I wouldn’t have got anything. I didn’t know how to help myself. I didn’t know about my rights in the UK until I went to Kalayaan, which advises migrant domestic workers. They explained my rights to me and were able to find me a lawyer to take my case.
My case shows that domestic work is real work and that work in a private household should have proper hours and be fairly paid – like any work.
The proposed residency test under the legal aid changes will stop people like me from getting help [the proposals mean applicants need to be lawfully resident in the UK and to have lived here continuously for at least a year at some stage]. This is on top of new immigration rules that mean domestic workers are given a tied migrant domestic worker visa, the rules of which also makes getting help impossible [the visa means migrant domestic staff in private households cannot change employer or stay longer than six months].
Employers will be able to treat these workers however they like as they will know that they won’t be able to challenge any mistreatment. Many are not paid at all for many months work in the UK. With no legal aid they won’t be able to do anything about this.”
Tracey Lazard, chief executive Inclusion London, a pan-London Deaf and disabled peoples organisation:
“Disabled people need access to justice now more than ever.
Entitlements to independent living and social care are being dismantled and reduced and the right to challenge is through judicial review – and that, to all intents and purposes, is going to be removed [the reforms make it harder to bring a judicial review].
Increasingly, local authorities are – in order to make budgets work – squeezing individual care packages…it’s only when a disabled person’s legal aid lawyer threatens the local authority with action, do we see them carrying out statutory duties.
It’s less likely that public bodies will be held to account [under the reforms] and in this climate of frenzied cuts, that’s more important than ever. Judicial review is a key challenge to ensure that public bodies meet their duties under the Equalities Act and due regard is paid to vulnerable groups.
Without legal aid funded judicial reviews, the recent work capability assessment and bedroom tax policies wouldn’t have been challenged.
We’ll have a huge percentage of the population without redress, and that is a dangerous system to be in.”
*Previous posts on legal aid can be found here and here