Category Archives: Disability

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.

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

Lizzie in the studio
Lizzie in the studio

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

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

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

Singer Lizzie Emeh

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

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

A huge percentage of the population without redress – that is dangerous

The government’s plan to slash £220m from the UK’s legal aid budget has rightly been condemned for its sweeping scale but, in this series of interviews I’ve done for the Guardian, the very human impact – the effect on the individual – is laid bare.

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 has helped to right countless wrongs since its inception as part of the post-war welfare state but the plans for change render it unrecognisable and inaccessible.

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 of deaf and disabled people's organisation Inclusion
Tracey Lazard of deaf and disabled people’s organisation Inclusion

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

“Ah the whiff of that bread!”: my sister the baker

Raana (left, centre) and her fellow bakers hard at work in the Lantern Bakery
Raana (left, centre) and her fellow bakers hard at work in the Lantern Bakery

My talented sister and her colleagues allowed us to document a day in their working lives at the Lantern Bakery based at the Camphill community where she lives. The bakery offers work and training to people with learning disabilities. You can watch and listen to the talented team of bakers in this Guardian audio slideshow we created after our visit.

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!”

Ordinary residence, extraordinary mess

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.

The original piece is on the Guardian website:

"Caught in a trap: disabled people can't move out of care",  The Guardian October 2010
“Caught in a trap: disabled people can’t move out of care”, The Guardian October 2010

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.

Tailor-made technology: systems and support in social care

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

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

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

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

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

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

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

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

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

“It’s important that while I’m having fun, Stanley is having a great time too”

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”.

Art thinks outside the box

Head of David Rushbrook, James Lake's sculpture of the baritone
Head of David Rushbrook, James Lake’s sculpture of the baritone

One glance at James Lake’s giant 3D portrait of baritone David Rushbrook, and you may never look at a cardboard box the same way again.

Lake’s showstopping sculpture, created through the painstaking layering of cardboard, is intended to move, sing and perform alongside the other performers on stage (the head has already featured alongside the opera singer in Glyndebourne).

As the artist explains on his website, he chose the “inexpensive, commonplace and recyclable” medium because he “wanted to sculpt beyond the traditional materials and without the need of an arts studio”. Lake’s right leg was amputated after bone cancer at the age of 17 and his work focuses on humanity, strength, and vulnerability. His aim is to create work that breaks down the barriers in the art world.

The giant piece of Rushbrook, who has a learning disability, is just one big reason to visit Shape Arts‘ pop up multimedia gallery in London, Shape in the City, which is now open until May. The disability-led arts charity works to improve access to culture for disabled people and Lake is one of 30 disabled or deaf artists featured over five floors and 60,000 feet of exhibition space.

Lake’s 3D work head is shown alongside prints, paintings, film and video, poetry, performance art and installations. The showcase features established as well as up and coming artists plus pieces from the London 2012 Cultural Olympiad programme: ‘Unlimited’.

Here’s a bit more information about three other pieces on display:

Sitting Without Purpose’, James Lake's depiction of his father
Sitting Without Purpose’, James Lake’s depiction of his father

Lake’s life-size Sitting without Purpose depicts his father during redundancy, aiming to reflect a man contemplating the challenges of life.

Noemi Lakmaier paints 500 pairs of shoes in  paint used used to mark accessible parking bays
Noemi Lakmaier paints 500 pairs of shoes in paint used used to mark accessible parking bays

Visitors to the exhibition can watch Noemi Lakmaier live or via webcam painting 500 pairs of shoes in the kind of paint used to mark accessible parking bays in homage to her 2008 piece Experiment in Happiness. Lakmaier’s work explores ideas of the “other”, such as how the individual relates to surroundings and identity. By the time the pop up gallery closes, it will be filled with hundreds of painted shoes.

Chrisopher Sacre's 'See What This Man Gave Birth to After Using 2000 Condoms in 22 Days'
Chrisopher Sacre’s ‘See What This Man Gave Birth to After Using 2000 Condoms in 22 Days’

Chrisopher Sacre‘s artistic epiphany, as he himself has said,”may have arrived in an unexpected form” – but his work has been transformed since discovering “a happy marriage between condoms and plaster”.

* Shape in the City, in partnership with Photovoice and Action Space, 40 Gracechurch Street, London, EC3V 0BT, 10:00am to 2:00pm. For more information email popupgallery@shapearts.org.uk

Puck, peppermint tea and posh frocks: my fabulous sister

With my fabulous sister, Raana
With my fabulous sister, Raana

Learning disability charity Mencap has a marvellous blog, which features, amongst other things, some very personal contributions. The site recently featured a lovely and touching piece from journalist and Mission to Lars filmmaker Kate Spicer on her brother Tom (he has Fragile X syndrome, like my sister Raana) and I contributed some thoughts too, so here’s Raana, in rhyme:

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

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

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

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

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

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

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

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

* The film Mission to Lars will be released on 8 April, with proceeds going to Mencap to help support people with a learning disability and their families. The film follows Tom Spicer who has Fragile X syndrome, a form of autism. He has a dream to meet his hero – Lars Ulrich – and his sister Kate tries to make that happen.