Tag Archives: social care

Public transport should be for all members of the public

Kevin Preen and Michael Edwards embark on their campaign to raise awareness about travel and learning disability
Kevin Preen and Michael Edwards embark on their campaign to raise awareness about travel and learning disability

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.

End To End Infographic

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.

An invisible population: older people with autism

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

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

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

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

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

Storytelling in senility: revealing dynamic personalities beneath the dementia

One of my biggest regrets is that I didn’t take down more of my mother’s stories before her slide into dementia accelerated. I would have liked to know more about her brief engagement to a Vietnamese diplomat, or the time she visited Benidorm when it only had two hotels, or what more she could tell me about her older brother who was killed in the war.

That’s why I was fascinated to meet David Clegg, the man behind an inspirational project dedicated to collecting the life stories of people with dementia. His Trebus Project has collected a huge range of stories, some of which have been published in two books and collected on a record and some of which have formed the basis for a Radio 4 series, produced by Paul Whitehouse and Charlie Higson. He’s now working on a short film.

It is estimated that over the next decade, the number of people with dementia will hit one million and today the prime minister is due to launch a “national challenge” on the illness, describing it as a “scandal” that the UK has not done more to address dementia. The cost to UK society is estimated at £23bn.

The prime minister is due to announce a major funding boost for dementia research, reaching £66m by 2015, from £26.6m 2010. He is due to say that “the quiet crisis” is one that “steals lives and tears at the hearts of families”

David Clegg’s Trebus Project is about revealing the fascinating and rich histories of people with dementia; it is about celebrating the lives that appear to have been lost.

Trebus began after Clegg closed down the art gallery he used to run and began working on art projects with care home residents. The very first person he met happened to be a woman with a fascinating tale to tell: she’d once been the girlfriend of the notorious acid bath murderer John Haigh.

“Nobody knew it,” he recalls. “They saw to her needs – it took two people to get her into a hoist for example, but they didn’t know anything about the fact that she was bohemian beyond belief. She would have given William Burroughs a run for his money – she’d hung around with Princess Margaret and made her way back from the south of France wearing only a fur coat and high heels.”

Sheila, one of the Trebus "storytellers" in her extrovert younger days
Sheila socialising (note she's standing in front of cricketer Fred Truman)
Sheila at her care home, in front of a portrait of her younger self

Clegg is full of anecdotes about the people he’s spoken to. One of my favourites comes from an elderly gay man, who remembered celebrating VE day in London. “I asked him: ‘Did you go to the Palace and see them on the balcony?'”, Clegg says. “He replied: ‘No I was in the toilets – I got off with seven soldiers that day and one more in the tube.’”

It’s a perfect illustration of Clegg’s point that far too often we try to sanitise the lives of people with dementia. “A person with dementia is presented as someone fading away, leached out, who’s a shadow,” he says. “But many of the people I’ve worked with are not shadows – they are trying to make sense of their lives in difficult circumstances. They are not any less as people – they can be as funny, vibrant, passionate and randy as they ever were.”

His is a refreshingly unsentimental view of dementia. “We need a new story on dementia. We either present it as a global epidemic or a tragedy,” he says. “But we have got to get the message across that these are people who were not always old, who have lived lives that were full and eventful. Sometimes we might disagree with what they did or the opinions they held but dementia care needs to grow up and embrace some of the complications.”

Clegg, who did a stint working as a carer to see what it was like, plays down talk of being an agitator for the human rights of people with dementia. “I go in and listen and keep coming back,” he simply says. But his project does shine a light on the appalling way older people can sometimes be treated.

A striking shot from the Trebus Project, this time of Marianne, another storyteller

Take the story of John, a man with no living relatives, who when Clegg first saw him was lying on a bed staring at the ceiling, in a completely bare room without even a clock to mark the passage of time. When care home staff were asked by Clegg to bring him a clock they did – but then fixed it on the wall behind his head.

Clegg says the vast majority of care workers do their best, reserving his ire for the lack of resources to stimulate residents and the managers or directors who only want to fill their beds – and who have sometimes banned him from their premises because they were nervous about what he was doing.

His main motivation, he says is to collect words that would otherwise be lost. In the process, he is putting together something incredibly powerful: stories that are sometimes funny, sometimes moving, sometimes, as he recognises, almost like a Samuel Beckett play in their bleakness.

The Trebus Project provokes you into looking behind dementia stereotypes

It also, says Alison Wray of Cardiff University, has very real benefits for the person with dementia, putting them at the centre of the process and allowing both them and their carers to reconnect with their identity. In Clegg’s recent work, he has been doing less editing to give the stories a traditional narrative structure. Instead they are presented as fragments. Says Clegg: “It can show what dementia is like from the inside.”

To buy the publications or to donate to support the work of the Trebus Project, go to the website or email information@trebusprojects.org