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.
For Streetwise course participant Peter Lomas, the harassment came in the form of kids throwing stones. Another participant on Peter’s course had been so shaken by the shouting and swearing she faced when getting a bus that she was too scared to leave her own home. Others had been conned by people they thought were friends who persuaded them to lend them money they then never saw again.
Bullying of people with learning disabilities can take many forms. According to the charity Mencap, as many as nine out of 10 nationally have been a victim of some form of hate crime or harassment.
That’s why Connect in the North, a Leeds-based organisation led by people with learning disabilities, has been running Streetwise, a tailor-made course to boost the confidence and independence of people with learning disabilities who might be vulnerable to harassment.
The course, which ran last summer and is being provided again this August, it’s run in the summer to allow people who go to college to attend. It brings participants together in a supportive atmosphere to talk through strategies for staying safe when they’re out and about in the city.
In the gaps between the four sessions, held once a week, those on the course are encouraged to go by themselves and then report back on their experiences, with their goals very much tailored to their own experience and capacity so that they are not putting themselves at risk. It’s a simple idea, but an effective one.
For, as Connect in the North consultant and trainer Sarah Wheatley explains, even just a little bit more independence can make a huge difference to people’s lives.
“Some people went from always being met by their support worker at home to meeting them at the bus stop,” she says, “that might not look like big progress but that was incredible for them, that they were starting to get independent. And one woman who had been so knocked back by her awful experience of abuse said on the last day she was going to go to the theatre with a friend and get the bus there herself. She did it.”
A report published by Connect in the North last year showed that, among the successful outcomes experienced by 22 people on the course, one person who often got lost planned and practiced a new journey, another travelled in taxis without support while others used buses, train and a coach for the first time.
Being on the receiving end of verbal abuse – or worse – can be incredibly frightening, But it’s also the fear of the unknown which can prevent people with learning disabilities from getting out on their own. “It’s things like who do you go to if you get horribly lost,” says Sarah. “It’s about building strategies to keep safe rather than thinking the only person I can call on is my support worker or the police. So if you’re on the bus and you miss the stop, then you could just go round again. And in Leeds we’ve got a Safe Places scheme, so there are shops and other buildings people can go in if they’re lost or need help.”
Streetwise also addresses the issue of “mate crime”, an all-too common experience for those with learning disabilities. “It’s the biggest risk – there are probably more cases than somebody being abused,” says Sarah. “People will pretend to be their friend and then borrow money and not pay it back. It’s about teaching the people on the course that that is not all right and they are worth more than that.”
It’s a sad fact that with social care resources ever more stretched, the one-to-one support available for people with learning disabilities for activities deemed non-essential is unlikely to increase any time soon. But who can put a value on being able to take a stroll to the shops or a bus trip to a community get-together?
Peter, who’s one of the directors of Connect in the North, relishes his own independence and is a powerful advocate for the Streetwise model after being on the course himself. “I’d tell anyone it’s a good thing to do,” he says. “It tells you what is safe and not safe.”
Jenny Dimmock works in a pathology lab. She and her scientist colleagues handle between 3,000-4,000 blood samples a day. The 21-year-old is also an ambassador for younger students, speaking about her experiences at conferences, like how part of her job involves placing specimens on a robot. Handling the robot, however, as her workmates say, is probably the easiest part of her working life.
Jenny, who has Down’s syndrome, trained on the job with the Project Choice scheme at City Hospitals Sunderland NHS Foundation Trust before she won her paid post.
As colleagues point out, while she was learning about the intricacies of the path lab, she was also learning about everyday practicalities like getting to and from her job on time or how to interact in the workplace. This week, her achievements are recognised with an award to celebrate Adult Learners’ Week this week.
We are more used to hearing about the failings of the NHS when it comes to its treatment of people with a learning disability. Only today the NHS ombudsman outlined the catalogue of mistakes which contributed to the death of Tina Papalabropoulos, a young woman with physical and learning disabilities.
If attitudes are to change among organisations which fail the vulnerable, one way forward is to make them more inclusive as employers so they reflect individuals from all walks of life. It’s one thing to stick up a learning disability awareness sign to help staff recognise vulnerable patients – as I spotted in my local hospital (it’s a good start) – but it’s entirely another to have people with learning disabilities on your radar as potential work experience students, interns or trainees.
Public sector organisations especially are encouraged to be more inclusive and diverse through their board membership and recruitment policies, with the Equality Act binding organisations to develop a more diverse workforce and uphold equal rights. But people with learning disabilities are one of most overlooked groups in the labour market with most employers unaware of – or perhaps put off by – the kind of support that learning disabled employees might need.
As Mencap points out in its campaigning material, people with a learning disability are more excluded from the workplace than any other group of disabled people. According to Mencap, less than one in five people with a learning disability work (compared with one in two disabled people in general), but at least 65% of people with a learning disability want to work. Of those people with a learning disability that do work, most only work part time and are low paid. Just one in three people with a learning disability take part in education and/or training.
Project Choice in Sunderland shows what can happen when employers take a more inclusive approach to recruitment and training. The scheme aims to provide work-based learning and experience for young people with learning disabilities.
The project starts with 16-21-year olds doing half a day a week work experience for six weeks. Students have one to one sessions with a mentor to help develop an understanding of the world of work. Next is an unpaid internship for four days a week in a work place and one day in college. Students, who can have up to three placements in the year, again have a named mentor and progress to working independently. Learning is reinforced in the classroom and interns undertake a work qualification like a Foundation Learning Programme or NVQ.
The final part of the scheme is, hopefully, an apprenticeship, job – as Jenny has proved – or further learning.
Jenny started with work experience under Project Choice and did an internship in 2010 when she left school. She spent a year as an intern in three departments: on a clinical ward where, among other things, she used her sign language skills to communicate with deaf patients, then in the hospital pharmacy and in the laboratory. She learnt on the job but also had one day a week at college learning about things like employment health and safety. As she says, “I have had amazing times since starting my work experience and have fulfilled my ambition of getting a permanent job.”
Project Choice isn’t, of course, the only supported employment scheme of its kind but it’s a pathway to work and training in a sector not usually open to people with learning disabilities. It’s the kind of scheme that can change attitudes both within healthcare and in wider society. We just need more like it.
* New figures released for Adult Learners’ Week, which ends on Friday, showed that the proportion of young people aged 17 – 24 taking part in learning has fallen by seven percentage points in the last year. There has also been a fall of six percentage points in the proportion of unemployed people participating in learning. The survey for NIACE interviewed 5,253 adults, aged 17 and over, in the UK 13 February–3 March 2013.
When I first met Linda, she told me: “When I was growing up I couldn’t imagine being anything”.
I met Linda when I was delivering a training course aimed at former substance misusers who wanted to become “recovery champions” and better support their peers engage in that service.
Although Linda didn’t speak with any great volume, there was something so utterly powerful and authentic in her statement that for a second the room stopped and focussed upon her. It was not a statement of self-pity, or an attempt to claim the title of the bleakest life experience; it was simply a statement of fact – here was a 48-year-old woman who had never thought she would “be” anything.
I would later learn that Linda had “been” sexually abused from an early age by a string of boyfriends that her mother, working as a street sex worker, had brought into the home. She herself had “been” a street sex worker for most of her life. She had “been” trapped in misuse of heroin and crack on and off for the last 25 years. She had “been” the mother of a small child who died due to swallowing Linda’s methadone prescription.
At some point during the day, we were discussing recovery capital and specifically, the idea of people holding different levels of cultural capital. Many participants talked about how when they were young what they had imagined their lives might be – and the kinds of things that had got in the way of these ordinary dreams. I recall that none of the participants had held any particularly grand or unrealistic hopes, just the usual – jobs, children, and a place to call home.
I guess the power of Linda’s statement was that although she had been many things she had never imagined what she might be.
I am proud to work as part of Addaction’s London training team. It’s a small team of three full time workers and one part time volunteer. The major part of our job is delivering something called the Next Project.
This is a 12-week training course providing the necessary skills and training to people who have been affected by substance misuse and, since August 2010, carers or those affected by the substance misuse of someone close to them.
Some might call it a back to employment scheme that really works (imagine that!), which is fine, except quite a lot of the people who do the course have never even officially had a job. We call it a personal development course that supports the participants to make the kind of changes needed to move their lives forward so they can enjoy the kind of lives that meets their human potential.
Rather than work from the assumption that our trainees are “addicts” or “victims” or “burdened with care” – we work from the belief that our trainees are smart enough to be interested in examining their own behavioural patterns. It is, if you like, a psychology course based upon study of self and the personal changes made possible with this knowledge.
We know this works because since 2005 when the Project started to April 2012, 338 people have attended it and 261 have completed it, a success rate of 77%. This has increased to 87% in the last four years as the project has evolved. 9 out of 10 people finishing Next in the last four years have completed qualifications and gone on to further education/training and volunteering. 31% of those that have finished since 2008 are now in full-time employment. This figure increases steadily over time as Next graduates gain experience and confidence from volunteering and further study that enables them to start applying for jobs
The course is purposefully demanding and intense – giving the participants a real sense of achievement when they complete the course. Next is a proven success story, and is heavily oversubscribed, with waiting lists of up to six months. Referral is from the London boroughs (Islington, Greenwich, Wandsworth and Southwalk funding through Terra Firma) that currently fund places, and a place isn’t cheap at £2,500 but the impact of successful completion reaches much further than the individual (Addaction estimates that each person dependent on illegal drugs costs the country around £44,000 a year, compared to £2,500 for each trainee, for a nine month period). In fact the benefits will extend as far as their children, families and the wider community.
Linda secured funding to do the Project. She completed the course. She did not miss one single session. I don’t think she missed a single minute.
We watched Linda transform – her physical presence, body language, voice projection, intellectual reasoning, confidence, self awareness. It was a transformation that Linda initiated within herself, we provided the right kind of knowledge, support, (the occasional) challenge and encouragement. It was as if she understood the importance of the moment. The moment when she finally could see who she deserved to be.
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.
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.
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.
“I quite clearly remember being tied to the cot sides,” recalls Florence, now in her 70s, of the childhood she spent in hospital. “Literally, two wrists tied to the cot sides with cotton tape so as I couldn’t get up and I couldn’t sit up because they – the doctors – had decided that if there’s something wrong with your back, you have to lie prone.”
Florence’s memories are among those featured in a project that encourages schools to create theatrical performances based on real stories of disability from people born in the 1940s, 60s and 80s. The Changing Lives, Changing Times project involved workshops at three Leeds schools over five weeks last summer and led to the development of teaching packs. These help teachers run awareness-raising workshops about disability and are being sent out to UK schools by the end of the year.
The drive coincides with Disability History Month, which starts today.
The rest of my piece in the Guardian’s social care pages is here, and I’m devoting the remainder of this post to extracts from the stories of Florence and Dan, both born in the 1940s, Poppy, born in the 1960s, and Holly, born in the 1980s, reflecting the contrasting experiences of disabled people in different eras.
Florence was born in the late 1940s, the daughter of a single parent, but when doctors diagnosed that she would never walk, her birth mother left her. Florence attended mainstream schools throughout the 1950s. She left school and entered her first paid job in the mid 1960s as a telephonist and clerk. Her second job was as a typist. Florence is a trained social worker. She is single, she has no children, she drives her own car:
“There were all sorts of problems of having a child that wasn’t going to be able to get do things normally. The children’s home really wasn’t ideal and they decided that they would foster me out because there were too many kids running about in the children’s home and because I wasn’t mobile I was getting picked on, getting hit, getting spat at by the other children.
I then went to foster parents who, although they knew that I wasn’t going to be able to walk, said: “Oh yeah, we’ll manage that fine”. And they didn’t, and after two months I was back in the children’s home. The children’s home said “no, we can’t cope with her here because she’s not mobile” so I went back into hospital, where I didn’t really need to be but because there was nowhere else suitable and they couldn’t find another foster placement, so that’s where I went.
My mother still was saying, “I don’t want anything to do with this child’, which was really difficult for her because any time that I needed any surgery or any intervention they had to get hold of her, and every time I needed something obviously it brought it back to her that I wasn’t living with her. So that must have been really difficult for her.
A relative of a child that was in the next bed to me for quite a while came in and after a couple of times coming in she realised that there wasn’t anybody visiting me, because nobody from the children’s home came, my mother didn’t come, so nobody came. So she said; “Well could I still continue to visit after my niece goes home?”. And they [hospital staff] said: “Yeah if you want to”. You know: Why would you want to do this? And she said: “I just seem to have got on with her and she’s got a really nice smile”. And so after a couple of visits she’d sort of said to the nursing staff “Is there anything else I can do?” And the nursing staff had obviously said, “Well, you know, it’d be nice if you maybe spoke to the social worker”, and so they set up an appointment with the social worker – and I ended up going out to them. Initially short-term fostering and then it turned out as adoption eventually. So that was really just luck and chance.
I had absolutely no idea where I was going because there was no proprietary work done – no photograph of the house, nothing. They didn’t do things like that then, they just assumed that a child would cope with it, you know. So we ended up at this house and there were like two steps at the front door. Although they knew I couldn’t walk it just didn’t register. I suppose because they felt I could stand up, I could walk, and the two are not at all related, but to people that have not known disability … why would you think about it?
I don’t think my adoptive brother was really consulted that much about it and I think he just took the attitude, “well, I’m an adult, it’ll not bother me”. And so, because there was such a big gap there really wasn’t a very close bonding at all and there still isn’t, but there is with his children, so that’s okay.
Apparently one day when we were in the town shopping … my adoptive mother saw my other, saw my natural mother coming in the door … … and we turned and walked away. Now I have not even got any memory of what my natural mother looks like. I have nothing.”
Dan, born in the 1940s:
“I can remember, I should imagine possibly 7 or 8, being in and out of hospital and, it was suggested by the medical profession that I should go to a special school, and I always remember it was a real big old type of building and we used to be taken on a… on a blue single decker bus and this school was um, it… it was more about doing this like making raffia baskets and playing with you know, clay and they… they had gardens at the back and used to let us potter about, digging things up or planting things, but it didn’t seem to be you know, really academic type of thing, it was all about… and I always thought I was the least disabled person there to be honest.
You were sort of cotton-woolled, you went in and there was always lots of people to help you, you know go to your classroom, help you if you needed it, sitting down, people brought things to you all the time to your desk or whatever, and um, it was… you knew you was different and you had this all the time, you knew that you were, you was different from anybody else, those outside, your friends at ordinary school, you needed this particular facility because you had a disability, and it was always the physical disability that was sort of, you know, important. That’s why I’m sure you know, it was as though you were limited, your mental capacity was limited.”
Poppy, born in the 1960s, went to residential special school at the age of four until she was 16. The school became her social world and she remembers feeling bored and lonely at home during the summer holidays. Her ability to move around independently was limited by an inaccessible environment. At school there was a strict institutional regime of normalisation including intensive physio and speech therapy (“the more dependent you were, the less privileges you got”) and there was corporal punishment for non-compliance and allegations of sexual abuse from some children: “I knew it wasn’t right, but there was no one to tell”. Poppy also saw changes towards a more enlightened attitude in the late 1970’s and whilst academic expectations for the pupils were not high she was able to gain enough basic qualifications to enrol at a further education college. Here is Poppy’s story:
“My first memory of school was crawling down the corridor after my mum and dad had gone, and I was in tears, because I didn’t really understand what was happening. I never walked, I was on the floor, I always crawled, so I crawled down the corridor. So the headmistress picked me up, shouted at me and put me on my feet. They had bars on the walls, and she said ‘we don’t crawl here, we walk’ and I had to walk and I’ll never forget that. It was pretty traumatic at the time.
The school was very institutionalised, and you got up at 7 every day, including weekends, which I wasn’t too happy about, and they had set meals, you had set bath times, set bed times, the day completely structured. Luckily we did have lessons, they did try to educate you, as much as they though was possible, but I still think we had a substandard education. It wasn’t very tasking.
I remember one child getting hit around the head, and I knew it wasn’t right, but I was too scared to tell anyone.
A new headmistress came, and she had very new ideas about disabled children, and I think she had higher expectations of us, and she taught us about classical music, how to appreciate the arts, I think we responded to that quite well. We would go to the theatre or we would go on days out to the Tate Gallery.
The aim was to get us as independent as possible, but not independent to use a wheelchair to get about; you must walk, you must talk. I had speech therapy, although you couldn’t tell now. I had speech therapy, and , I had physiotherapy, and we had to dress ourselves, we had to feed ourselves, and some people weren’t able to do that; the more dependent you were, the less privileges you got. So because I could get dressed on my own, I could sneak a few minutes in bed longer in the morning, I had more freedom, you know, I could do as much as anyone, I could come and go as I pleased.
I think young people have a lot of pressure today, I think it’s harder, I know one lad, he’s at a non-disabled school and he finds it really hard to kind of be part of the whole system, because he is different, he knows he is different and in some ways, his school mates treat him differently and he hates that. I didn’t get that at school, we were all the same.
College was like a right of passage. It was where I learnt to become who I am now. The way I learnt to become, I think, an independent adult, not in the sense of learning to walk, dress and all that stuff but to think for myself, to have the choices that I wanted, and to be able to make those choices. Also it made the selection process more powerful because you knew you’d been selected because of your intelligence, and not someone patting you on the head.
I majored in English and my minor was in Sociology and we studied ethnicity, racism, and sexism, and different kinds of religions and beliefs, and age discrimination and class, nothing about disability, so at that point I wasn’t even aware I had a political identity as a disabled person.”
Holly was born, several months prematurely, in the 1980s. She was not expected to live for more than a few days and doctors advised her parents not to bond with her. Her parents separated after her impairment was diagnosed, so Holly lived with her mother, who gave up her career, and a step-brother from a previous marriage. Her mother re- married. Holly was sent to a residential special school when she was two-years-old, and stayed there until she was 18. When she left school, at the age of 18, Holly also left home, partly because she had become more distant from her parents, and because she had experienced some domestic violence and abuse. She went to a mainstream college to study dance, but never finished due to back problems. Holly lives alone in a council flat. She works as a volunteer for a local disability organization and a charity that supports children who have been abused. Holly has aspirations to do a paid job and marry her boyfriend:
“Some people are completely ignorant, not through malice but they are ignorant when it comes to disability. Somebody’s already formed in their own head what a disability means and if you kind of break their train of thought about what a disability is, you kind of completely shock them.
I think it’s changing very, very slowly but I don’t think it’s changing at the pace that it should be. I think there’s still an awful lot of undertone, tokenism, you know, people still get patronised when they’ve got a disability. I actually find the worst people for it are teenage girls – like girls in between the ages of let’s say fifteen to early twenties. I don’t know whether it’s because you know, I don’t quite understand, but I’ve experienced really quite bad attitudes with that kind of age group.
I still find it absolutely disgusting that women that need to access places like women’s refuges are turned away on the basis of their disability. I think people are still like –what do you mean domestic violence? Well, you’re disabled. Because they either think that you – that you are completely spoilt and wrapped up in cotton wool as a child, and obviously you can’t experience domestic violence from a partner because disabled people don’t have sex. I find the – worst thing a parent can do is pull a child away when they want to know why that lady is in a wheelchair. I wish to god parents would just let their children ask. And then maybe we could start educating from that age.”
The intriguing photographs here are from those in a new exhibition created by children from Roma, Slovak and Polish communities in east London,
The works, created using pinhole photography, have been produced by 12 young people aged eight to 14 from Roma or new migrant backgrounds. The show is part of a Children’s Society project, the Roundabout Arts Project, and the images reflect the children’s views of their heritage and the summer of Olympic sport. The young people from Newham created 20 pinhole photographs and an animated film (below).
The project, a partnership between the Children’s Society New Londoners Roma/New Migrants Project, art group Click Academy, aims to promote a greater understanding of European migrants and Roma culture, showing the communities’ contribution to London life.
Artist Marta Kotlarska’s Click Academy uses pinhole photography to encourage social change (with the aim of showing it is possible to “make something out of nothing” and at little cost). As Kotlarska has blogged on the Children’s Society website: “Our hopes for the children to learn the realities of the creative process and have the opportunity to express their creativity were realised. Roma children often don’t have access to the arts because of discrimination and social exclusion and we wanted to change this.”
* The Roundabout Arts Project exhibition is open for three weeks at The Hub, 123 Star Lane, London, E16 4PZ, 9am-8pm from Friday 19 October to Thursday 8 November.
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 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.
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”.
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