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
There’ll be more from the bakers of Camphill on this blog in the next week or so – they really are an inspiring, welcoming and talented bunch of people and work in what has to be one of the buzziest bakeries I’ve ever been to (listen to the audio slideshow – especially my sister’s numerous interjections – and you’ll see what I mean..).
For now, however, the slideshow photographs and the words of the bakers themselves speak volumes and do a better job than I could in a long piece of writing to reflect the bakery’s ethos and prove why schemes like this are so vital. Plus they make the most amazing things so, I’d like leave the last word to my sister, “ahhh the whiff of that bread!”
“Disabled people in residential care who want to live more independently are being prevented from doing so by funding wrangles between local authorities” – that’s taken from a piece I wrote three years ago, but since then little has changed.
Here’s the mess: an individual’s “ordinary residence” is usually in his or her original local authority area, so if a council places someone in residential care outside the area, it remains financially responsible.
But when someone decides to move from that residential care in the new area into supported accommodation within the same (ie “new”) area, their original authority argues that it is no longer responsible for funding. However, the new authority – where the person actually lives – argues against funding someone not originally from the area. The result – limbo.
Confusing? Not really, what it boils down to is that councils are passing the buck over people’s care, effectively dictating where people should live -and all the while, individuals themselves appear to have no say. And quibbling over the care bill will only get worse as local authority cuts continue to bite.
I’ve been involved in a piece of work published today by social care organisation Voluntary Organisations Disability Group. The VODG has previously demanded action to resolve such ordinary residence dilemmas and, this time, it argues that the Care Bill offers ample opportunity to finally tackle the challenge. The new briefing, Ordinary residence, extraordinary mess, is available from the VODG website, with this post outlining how the situation has become “business as usual” in many areas.
One way forward, which the bill could accommodate, is strengthening the duty on local authorities to cooperate with providers and with each other to prevent delays in funding when people want to move from one care setting to another. The Epilepsy Society, for example, which contributed to today’s publication, estimates that in the last three years it has covered gaps in fees totalling £350,000 and “staff time involved in chasing fees over the same period has amounted to approximate 340 days across all departments including senior and service managers, finance and administrative staff”.
Here’s just one story from today’s publication, from a social care provider in central England: “Joe moved out of residential care into supported living accommodation nearby, run by the same charity provider. Council A, where Joe is now ordinarily resident, is refusing to take over funding from Council B which had previously paid his out of county residential care fees. Some 14 months later, the social care provider (a medium sized charity) is owed nearly £50,000 from Council A for this one client. Members of the charity’s finance team chase Council A each week and include copies of previous correspondence and agreements. Council A continues to delay payments, giving the provider different reasons for not paying and passes the query around different council departments. The charity has continued to provide care and covered this gap in fees.”
While the powers-that-be seem unwilling to either acknowledge the scale of the problem or indeed have the confidence to untangle the mess, vulnerable people across the country remain in limbo, unable to move to the place of their choice because of bureaucratic wrangles.
As Anna McNaughton’s mother told me three years ago: “All Anna wants is to live in a suitable home – it’s a basic human need, not a luxury.” It’s a desperate situation that three years on, her words still have the same resonance.
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.
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.
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.”
Stanley Holes is, says his little brother Albie in the brief video diary above, simply “the best brother I could ever have.” Albie’s love for his 16-year-old brother is reflected in this short film which I just watched and wanted to share. Produced for Autism Wessex, the charity that supports Stanley, it stands out for me because it’s presented from a sibling’s perspective: “I love him very much,” says 11-year-old Albie of his teenage brother, “and he is very important to me and my family.”
Diagnosed with autism at three, with no speech and, as Albie says, “little understanding of the world that surrounds him”, Stanley hadn’t been to an autism-specifc setting until last year when he started Autism Wessex’s Portfield School in Dorset. Underlining the vital need for autism-specific support, only now is Stanley receiving proper speech and language therapy – and he’s thriving on the specialist care and education. In one of the previous schools he was at, his family was told that as Stanley was autistic, there was no point in him getting speech therapy since his condition made communication impossible.
Stanley was regarded as a child whose behaviour challenges, his complex needs mean he is prone to anger and violent outbursts (“episodes”, as Albie explains in the film). Yet his story shows that even in complex cases, positive outcomes are possible.
Stanley has started to shows more awareness of his surroundings, and is becoming more independent, using signing with more confidence. Younger brother Albie, meanwhile, is more assured about talking to people about his older brother and how autism affects him and his family’s life.
Stanley’s family realised after a few short months that he seemed much happier at his new school compared to previous special needs environments; as Albie says in the film, “It’s important for me to know that while I’m having fun, Stanley is having a great time too.”
Stanley is a weekly boarder at Portfield, coming home for the weekend, where Albie his parents, plus fellow siblings Mabel, 15, and Elsie, 7, are keen to spend time with him. Before starting at the school, as their father Paul says, Stanley’s behaviour was having an adverse impact on his siblings. Now, says Paul, the change in the family dynamic and in Stanley is “the difference between living and existing”.