Potential, not prejudice: photo project challenges disability stereotypes

Mark, on his wedding day

Mark, on his wedding day

When newlywed Tessa got back to the hotel with husband Mark after their wedding, she found he’d arranged a surprise – he had scattered flowers and balloons around the room.

As Tessa recalls in a new book, Great Interactions by photographer Polly Braden: “I kept laughing at Mark – he was trying to throw the flowers around me…He’s happy now he’s married. We love each other. Being married doesn’t feel any different. That’s it. It makes me feel happy. Mark’s already got his name, so his wife will be Tessa Jane Ahrens, that’s mine and Mark’s choice. I used to be Warhurst – not anymore now. When my bus pass has run out they’re going to change my name on it.”

Tessa and Mark on their wedding day, Tring Church, Hertfordshire

Tessa and Mark on their wedding day, Tring Church, Hertfordshire

The couple’s story is one of many documented in Braden’s book and exhibition. The project aims to capture the daily lives of people with learning disabilities, from everyday interactions to landmark events like Mark and Tessa’s wedding. The book will be published next month and the images will also be featured in an exhibition at the National Media Museum, Bradford.

Polly Braden spent two years working with social care charity MacIntyre and the people it supports across the UK. The resulting work, refreshingly, offers a glimpse of the diverse, individual, ordinary lives of people with learning disabilities – around 1.5m people in the UK have a learning disability, but the population, usually seen as a homogeneous mass or single statistic, is defined by needs and lack of ability, as opposed to current or future potential.

Braden’s project also comes at a time when public sector funding cuts threaten vital support services and, as I’ve written before, families fear that the long-promised improvements to the care of people with learning disabilities may never happen.

Caroline and David, Holmewood Community Centre

Caroline and David, Holmewood Community Centre

Braden’s work does not gloss over the problems, but offers a different perspective. She explains: “The people I have met all have stories about the barriers, prejudice and ignorance they and their loved ones have faced in simply trying to have fair opportunities in life. But their stories are also inspiring and filled with heart-warming moments which would have seemed impossible to imagine earlier in their lives – from being active and using public transport to graduating from high school and getting married.”

Aja with Farah, MacIntyre No Limits, Oxfordshire

Aja with Farah, at an Oxfordshire support scheme

Raymond and Peter, Christmas Party 2014, Civic Hall, Ellesmere Port, Cheshire

Raymond and Peter, Christmas Party 2014, Civic Hall, Ellesmere Port, Cheshire

The photographer’s aim was to try to take photos about support “at the best it can be, but not to gloss over the profound problems in the provision of care and support and the challenges around this as well”. The project tries to look at what can be achieved for people when they are given good support, “and to talk about what happens when they are not”.

The aim of the project is “to challenge out-dated, institutionalised images and improve public awareness by recognising and highlighting the every day interactions and life changing experience of people with a learning disability”. It also focuses on social care professionals’ attitudes towards and relationship with the people they support. As one support worker, Raul, told Braden of the person he works with: “Mikey needs this kind of support: he needs to be around people who know and understand him, who are willing to go a step further and discover the bright and amazing person he is.”

Becky, Stephanie and Lesley, dance and movement class, St Elphin’s community centre

Becky, Stephanie and Lesley, dance and movement class, St Elphin’s community centre

Sarah and Zoe, Great Holm Coffee Shop, Milton Keynes

Sarah and Zoe, Great Holm Coffee Shop, Milton Keynes

Lucie, Milton Keynes Sports Centre

Lucie, Milton Keynes Sports Centre

Charles with Callum, MacIntyre School, Wingrave, Buckinghamshire

Charles with Callum, MacIntyre School, Wingrave, Buckinghamshire

* All photographs by Polly Braden, the book Great Interactions is out in March and the six-week exhibition at the National Media Museum, Bradford, opens on 27 February.
* To mark the book’s launch, the National Media Museum and MacIntyre are asking people to share photos of “everyday moments that make life matter” on Instagram, using the hashtag #IamMe
* For more reading, see this Guardian feature published at the weekend..

Posted in Community, Cuts, Disability, Learning disability, Social care, Uncategorized | Tagged , , , , | Leave a comment

How ballet can break down barriers

An inclusive ballet session at  ballet school Flamingo Chicks (photo: Flamingo Chicks)

An inclusive ballet session at ballet school Flamingo Chicks (photo: Flamingo Chicks)

A Bristol-based dance project is spreading its inclusive arts campaign, training teachers to run ballet sessions for disabled children and their non-disabled counterparts.

UK-based Flamingo Chicks dance school ran pilot sessions in Ghana earlier this month (photo: Flamingo Chicks)

UK-based Flamingo Chicks dance school ran pilot sessions in Ghana earlier this month (photo: Flamingo Chicks)

My piece on the Flamingo Chicks dance school, which launched two years ago as a community interest company, is on the Guardian site today. Its weekly classes in Bristol, Leeds, York and London reach 1200 three to 19-year-olds with or without disabilities, and those with illnesses such as cancer. Classes offer access to mainstream dance activity (often, such classes are segregated), develop confidence, social skills, co-ordination, communication and concentration.

Now, the sessions are launching in Ghana – dubbed “the worst place in the world to be disabled” – sessions reaching 200 children and training 10 teachers to put on classes. Founder Katie Sparkes has contacts in Africa thanks to her work supporting charities with corporate social responsibility.

UK-based Flamingo Chicks dance school ran pilot sessions in Ghana earlier this month (photo: Flamingo Chicks)

A pilot dance session in Ghana (photo: Flamingo Chicks)

Sparkes says of the work in Ghana earlier this month: “We did lots of workshops with children aged two to 25 and also did a teachers’ training session where teachers and childcare workers from a variety of schools and orgs attended. We left them with lesson plans, equipment and a host of ideas. We’ve also set up an online ‘Global Chicks’ group where we can provide on-going outreach support. Any questions, ideas or motivation they need, our teachers will respond and coach them, also providing video tips or tutorials.”

Ballet, with its discipline and formal image, might not seem an obviously accessible art form, but Sparkes says it can improve body awareness, muscle strength and core stability. Its storytelling aspects and focus on character are also accessible.

Dance school Flamingo Chicks runs inclusive ballet classes for children of all abilities.

Dance school Flamingo Chicks runs inclusive ballet classes for children of all abilities.

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The school has eight teachers who focus on trips and performances as goals and benchmarks, instead of exams. The 45-minute or hour-long sessions include drama, dance and yoga using sensory equipment like feathers, dance ribbons, scarves and flashcards for deaf children, or hula-hoops to teach arm movements to a blind child. The relaxed atmosphere means children may wander around or makes noises without fear of flouting any rules.

There are an estimated 770,000 children with disabilities in the UK. Three quarters of families with disabled children feel so isolated that it has caused anxiety, depression and breakdown, according to charity Contact A Family. Four in ten (38%) parents of disabled children say their child ‘rarely’ or ‘never’ have the opportunity to socialise with children who aren’t disabled, according to a 2014 Mumsnet and Scope survey.

The full piece is on the Guardian’s social care network.

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The Social Issue will be back in January

Cheeky Robin, by Steven Padmore

Cheeky Robin, by Steven Padmore


Thanks to all who read, shared, contributed to or commented on the blog this year.

I originally posted the image above in a piece back in May, on the Down’s Syndrome Association’s annual photography competition which challenged people with the learning disability to go behind the lens.

Always up for hearing about ideas and issues for 2016 – just drop me a note.

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Homes, hospitals, ambition and actuality

Claire Dyer's family campaigned for her release from an inpatient unit 250 miles away (photo: Cath Dyer)

Claire Dyer’s family campaigned for her release from an inpatient unit 250 miles away. Claire features in today’s Guardian piece (thanks to Cath Dyer for the photo of Claire, who loves both music and Christmas)

Four years after the abuse of people with learning disabilities at Winterbourne View (and 30 years after the start of care in the community and 20 years after the influential Mansell Report), NHS England recently unveiled a £45m plan to move people out of institutional care and back into communities. “Homes not hospitals”, is the laudable vision.

This is where grand ambition contrasts with grim actuality, as I explain in a piece in today’s Guardian.

A report leaked to the BBC and sparked by the preventable death of 18-year-old Connor Sparrowhawk in a Southern Health Trust inpatient unit, revealed that the trust failed to investigate some 1,000 deaths in its care over a four year period.

Then yesterday, the Learning Disability Census Report 2015 from the Health and Social Care Information Centre revealed there 3,000 people in inpatient units – 3,500 if you count those “unreported” in the figures (more on this here from Mencap and the Challenging Behaviour Foundation, and the HSCIC explains the discrepancy under its editors’ note number eight here).

Déjà vu? In 2013, according to the HSCIC, there were also around 3,000 people in inpatient units (in fact half those in units today, were also there for the 2013 headcount). And a previous £2.86m government-funded improvement programme from the Local Government Association and NHS England tried but failed to move everyone out of such units by 1 June 2014.

The census, established in response to the abuse at Winterbourne View, also shows the average length of patients’ stay is five years, there is heavy use of antipsychotic medication (almost three-quarters of people – despite the fact that less than a third have a diagnosed psychotic disorder) and more than half self-harm, have accidents or suffer assault, restraint or seclusion. Around a fifth of all inpatients are at least 100km from home.

Reading these stark facts would lead most of us to conclude that if you have a learning disability, you’re less likely to be cared for properly in life, unlikely to have your premature death investigated thoroughly – but if you’re lucky, you might be included in a census (depending on the data collection methodology etc etc).

I’m more pragmatic than negative. My sister, Raana, who has a learning disability, leads a busy, active life where her choice is central to her daily life. There are many organisations out there doing great stuff. I’ve met people who have moved from institutions into supported housing in towns and cities, with the help of truly brilliant, hardworking care staff. I’ve spoken to families who feel involved in shaping the care of their son, daughter or sibling, some with very complex needs. I’ve read – and written – reports outlining good practice in ensuring people get out of these places. While there’s still a postcode lottery at play, “we know what good looks like”, as stressed by many social care experts I speak to.

So as I began writing today’s Guardian piece, I’d expected a narrative of cautious optimism. As I came to finishing it, the Mazars report was leaked and new figures showed little change in the number of people in inpatient units, hence the headline above this post.

The report into Southern Health by auditors Mazars – which as I write, is still not published, despite making headlines and being debated in parliament – has renewed concerns over institutional disablism, led to calls for a national inquiry and, as this piece by Andy McNicoll underlines, provoked widespread criticism over the response of the trust and its chief executive (for links to some powerful blogging and commentary, search Twitter for #mazars or #JusticeforLB).

Katherine Runswick-Cole, senior research fellow at Manchester Metroplitan University’s research institute for health and social change, suggests that until the dehumanisation of people with learning disabilities ends, inadequate care – irrespective of care setting – may linger (related issues include, for example, a hospital listing a patient’s learning disability among reasons for sticking a “do not resuscitate” order on his file).

Recent cases in supported living and residential care – non-institutional environments – reflect this concern.

In January, Thomas Rawnsley’s family will attend a pre-inquest meeting into his death. The 20-year-old, who had Down’s syndrome and autism, was taken to hospital from a residential care home in Sheffield earlier this year, but died two days later.

His mother, Paula, says: “Thomas had great empathy and compassion, he always wanted to make people laugh. If people had taken time to get to know him they would’ve found that out.”

Robin Kitt Callender, a care home resident who was severely autistic and partially sighted, with communication difficulties, died on 23 May 2012, less than 24 hours after finally being admitted to hospital. An inquest in March ruled that she died from natural causes contributed to by neglect, with failings by her GP and hospital staff. Robin’s sister Karen has since launched the Casualties of Care campaign for better rights for people and families.

Dismissive attitudes towards people with learning disabilities extend to their families. As Deborah Coles, director of Inquest, has said, the Mazars report only came about “because of the tireless fight for the truth by the family of Connor Sparrowhawk”.

Meanwhile, back with the grand vision – well meaning and welcome as it is – NHS England says it is working closely with regulator the Care Quality Commission to prevent any new assessment and treatment institutions from being created. But in yet more ambition vs. actuality, the Public Accounts Committee has just criticised the CQC for being ineffective.

Connor Sparrowhawk’s mother Sara Ryan, a senior researcher and autism specialist at Oxford University’s Nuffield department of primary care health sciences, says that the Mazars report “confirms that learning disabled people don’t count in life or death” (see more on this on Sara’s blog). And this post by Chris Hatton suggests some “required reading for anyone wanting to understand the issues involved in premature deaths of people with learning disabilities”.

Hard to disagree with the conclusion of Katherine Runswick-Cole who said when I interviewed her, “the pattern is abuse, inquiry, report, repeat”.

Posted in Abuse, Community, Disability, Health, Learning disability, Local government, Social care, Uncategorized | Tagged , , , , , , | Leave a comment

How English councils are supporting unaccompanied child asylum seekers

Ports of entry like Kent and Croydon look after a disproportionate number of child asylum seekers, and government funding doesn’t cover all the costs, as I explain in a piece on the Guardian’s social care pages.

Many concerns were raised at the National Children’s and Adults Services Conference in Bournemouth in October, and are reflected in recent research from Brighton University. This describes “an extremely uneven distribution” of unaccompanied minors. A Freedom of Information request reveals that seven out of 150 English councils look after 43% of all unaccompanied asylum-seeking children.

In Kent, there are 1,384 unaccompanied asylum-seeking young people, including 982 under-18s; more than a third of all looked-after children.

Peter Oakford, cabinet member for specialist children’s services says: “It’s been the most difficult year Kent county council has ever experienced regarding unaccompanied asylum seeking children … This places enormous pressures on staff in services within the council, foster carers and education services as well as all our partner agencies like the police and health.”

Amid the debate about dispersal schemes and funding shortfalls, Kent’s latest figures reveal the human cost; 180 children do not have an allocated social worker and are still waiting for a full assessment.

Read on here.

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Equal rights at the end of life for people with autism

Michael Baron, a National Autistic Society founder parent, whose son Timothy is 60, says of the concept of “a good death”: “At the age of 86, I want that for myself, but just as much I want that end of life conversation for people on the autism spectrum like my son.”

Michael, who is frequently asked to speak at conferences on the issue of ageing, autism and end of life care, has just contributed to what he calls “necessary and timely” guidance on end of life care for people with autism or a learning disability which is to be published on Friday – my Guardian piece here explains more.

The guidance from the British Institute of Learning Disability (BILD), Peaceful, Pain Free and Dignified: palliative and end-of-life-care for people on the autism spectrum, is unique due to its autism-specific focus and its step-by-step descriptions of how health and social care staff can offer better care.

“As his family, we don’t want the manner of Timothy’s death to be decided solely by others,” explains Michael. “He may be disabled and lack legal capacity but nonetheless, a ‘good death’ involves meaningful conversations [between individuals, families and staff] that acknowledge the absence of legal rights but the enduring presence of human rights. Families should be consulted [throughout end of life care] and no decision should be made which has not already been discussed, that is the minimum human right to which someone is entitled to.”

The UK is home to around 1.5 million learning disabled people, but the real figure, including the undiagnosed, may be higher. BILD says that by 2030, there will be a 30% increase in the number of adults with learning disabilities over 50 using social care (no figures exist for older autistic adults). This population faces health inequalities; the 2013 Department of Health-funded confidential inquiry into premature deaths of people with learning disabilities found that people die on average 16 years earlier than they should, because of poor diagnosis and treatment.

“We all wish for a pain free, peaceful and dignified end to our lives,” says Lesley Barcham, BILD’s ageing well project manager, “but for people with learning disabilities or autism, who may not be able to speak up for themselves, it can feel like this isn’t something they can control.”The publication stresses how autism or a learning disability affects end-of-life care. People may have verbal and non-verbal communication difficulties, for example.

Some support exists – advice on helping bereaved people with learning disabilities and the voluntary PCPLD Network (Palliative Care for People with Learning Disabilities) connecting disability and palliative care professionals – but learning disability end-of-life care has a low profile. A recent European Association for Palliative Care taskforce report on people with intellectual disabilities, describes “a largely invisible population with hidden needs”, warning of “a risk that their needs are therefore not seen as a priority, or even as a problem”.

As Ferguson says, there is a much wider question at stake. “It’s a much bigger issue about early diagnosis and early treatment planning for vulnerable individuals who struggle with self-advocacy…People with a learning disability or autism should have access to the same care that the rest of us do”.

* You can read more about how Timothy Baron and the first Society for Autistic Children – which became the National Autistic Society – in this good piece by his sister, Saskia, a journalist and TV producer.

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Play is a post code lottery for deafblind children like Ruby

Ruby Barcham, her mother Lesley is campaigning for accessible play opportunities

Ruby Rogers, her mother Lesley is campaigning for accessible play opportunities

Guest blogger Lesley Rogers is chairing the charity Sense’s inquiry, The Case for Play into the lack of access to play opportunities for under-fives with multiple needs. Lesley is involved alongside co chair David Blunkett, the former education secretary, and Julie Jennings from RNIB as an expert advisor.

Play is an important part of childhood, it’s where children learn about the world around them, build relationships and friendships. But I know from experience with my eight-year-old Ruby that children with multiple needs often don’t get the same opportunities to play as other children.

Ruby was born with a rare condition called CHARGE syndrome and is consequently deafblind, she also has a heart condition and feeding problems.

We struggled from the very beginning to find appropriate play opportunities for Ruby. From finding accessible play groups to swimming pools and play parks. Every activity and opportunity for play has to be checked it’s accessible and appropriate beforehand, if it’s not, I have to ask for adaptations – and if those can’t be made, we can’t go and Ruby misses out.

But for children like Ruby, play is even more important. It was through play that we learnt to communicate with each other through basic sign language, through play Ruby is developing her muscle tone and through play she’s learning to connect with others around her.

We initially struggled to find appropriate play and activity groups. When Ruby was younger I wouldn’t take her to regular toddler groups, I felt vulnerable and isolated. I didn’t want to explain Ruby’s condition to other parents, and I wanted to go to places where I could meet people who would understand.

When Ruby was 18 months we were introduced to the deafblind charity Sense, it was a lifeline. We started going to the Sense play group, Sparkles, in Barnet. It used to take me 40 minutes to get there, but it was worth it. You didn’t need to explain to anybody what was wrong; if you came along with a feeding pump and a suction machine, it was accepted. I found everything I needed there, support from other parents and expert knowledge from staff.

Over the years I have spent so much time researching activities and play opportunities on the internet. I don’t want Ruby to miss out so I have thoroughly explored my borough but nowhere fully meets her needs. I’ve learnt that you have to be very proactive; I approach establishments, tell them about Ruby and ask if they are willing to make adjustments.

I hope that the inquiry will raise awareness of the challenges families like ours face every day. I hope that the government listens to the evidence and the recommendations that Sense presents and that appropriate changes are made following this. I hope that families get more support, particularly in the early years when parents could be feeling overwhelmed and confused. The earlier they receive help, the sooner they can provide the right support to their children.

With the right support, Ruby has the chance to enjoy play and leisure activities. She loves swimming. She goes once a week with school. It’s a great achievement that Ruby is able to attend the sessions. Ruby doesn’t like cold water so together with the school we contacted the leisure centre to see if they would be willing to open the jacuzzi and smaller warmer pool for us, we also needed an extra life guard and extra time in the changing rooms which they agreed to.

Ruby goes to the pool with her intervenor, her intervenor is basically her eyes and ears, she shows Ruby how to do things in a way that she understands. The intervenor will take toys into the pool, she’ll flick a ball to Ruby and Ruby will flick it back. Through swimming Ruby is strengthening her muscle tone, she’s also learning to socialise with her classmates which is great to see.

The most common barriers in terms of access to play settings for children with multiple needs is that there just aren’t enough places that are accommodating to children with multiple needs so accessibility is a big one.

There is a lack of information about play groups and activities that are suitable. For example we got introduced to Sense when Ruby was 18 months, it was a lifeline for us and I wish we knew about them earlier. Quite often you find out about things through word of mouth, this shouldn’t be the way. Parents need support as much as the children. It’s vital, particularly in the beginning.

Also I don’t often have confidence in the staff to leave Ruby with them. For example, I need to know that the staff can feed her and that they can sign. The reality is these places are few and far between, I have fully explored my borough and there is nowhere that fully meets her needs, this means I have to go with her all the time. Or use an intervenor.

What more can be done to boost such opportunities? Parents should have better access to information and advice on how to play with their child. Disabled children and their families should be involved in the design of play spaces and sessions to ensure they meet their needs.

There should be better training of staff and management at play groups etc. Often parents of children with complex needs have to come in and train staff how to care for their child’s medical needs. Every local authority should provide accessible play opportunities that meet a range of needs, in both specialist and mainstream settings.

All children and their families should have early access to support from specialist workers. Local authorities should make early intervention through play a funding priority.

A focus on play just isn’t seen as a big priority in the current financial climate. It’s turned into a kind of post code lottery for families, local authorities can now make their own choices about whether to prioritise play – some local authorities still have a local play strategy and continue to invest in play whilst others do not. This is despite the fact that funding early intervention and development is the best way to make a saving in the long term.

* Sense is calling for evidence from parents of children with multiple needs, specialists from the disability sector and practitioners. Visit the Sense website to get involved. For more information about the inquiry, email playinquiry@sense.org.uk

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How arts therapy can support people with dementia

Working with memory triggers in a reminiscence arts session (photograph: Age Exchange)

Working with memory triggers in a reminiscence arts session (photograph: Age Exchange)

By 2025 there will be one million people with dementia in the UK, according to the Alzheimer’s Society; a project I reported on today for the Guardian online is proving the impact of arts-based therapy on people with the condition.

Take Eddie (not his real name). When he first met arts practitioner Jill, from London-based arts group Age Exchange, he was withdrawn and uncommunicative.

Eyes downcast, head bowed, hands clasped and legs crossed; Eddie, an introverted wheelchair user, had been in a dementia care home for a decade when he began sessions Jill.

Over six weekly reminiscence arts sessions – work that explores memories using creative activity – Jill noticed how Eddie became “awake, sitting upright in his wheelchair, trying to talk, being better at regulating his mood and behaviour … He felt safe enough to allow himself to express some of these stored up energies and feelings through movement and making sounds which freed him and allowed him to start opening up and connecting with people.”

A simple gesture after the final session – previously unimaginable – reflected the transformation. Jill recalls: “I was very touched as we said goodbye; he extended his right hand towards me, I took it and we shook hands.”

My piece today highlights the specialist practice of reminiscence arts; Eddie was among 200 older people involved in research into the method in Lambeth and Southwark, evaluated by experts at Royal Holloway, University of London. You can read the rest of the piece on the Guardian’s social care network.

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Shattering stigma with the power of poetry

KIm Wolf on her birthday, she inspired her brother's poetry (photo: Rogan Wolf)

Kim Wolf on her birthday, she inspired her brother’s poetry (photo: Rogan Wolf)

A poetry exhibition opening today aims to challenge attitudes about learning disability and mental ill-health.

The learning disability poems are partly a tribute to the late Kim Wolf, who had Down’s syndrome; the collection includes writing inspired by her and which reflects her perspective on life.

A collaboration between Kim’s brother, former mental health social worker and poet Rogan Wolf, and disability charity United Response, the exhibition, entitled Dignity and Light, aims to “address and challenge the stigma and stereotypes and fears still associated with learning disability and – even more – with mental ill health”. As Rogan explains: “If I can see what life is actually like for you, then I am more likely to recognise and not just dismiss you”.

The poetry has been “written with, by and about people with learning disabilities and mental health needs” (United Response explains more of the background to the project here).

Newborn Kim Wolf, who partly inspired a new poetry project (photo: Rogan Wolf)

Kim Wolf pictured as a newborn; she partly inspired a new poetry project (photo: Rogan Wolf)

The poems, part of the Poems for project that supplies poem-posters for public display free of charge, are on display at Bristol’s Paintworks from today until Thursday. The collection will then be available online, as an illustrated book and, it is hoped, used in schools to raise awareness.

Rogan says of the project’s aims: “There is still this common urge to treat people who are in some way ‘different’ as dangerous aliens, or objects of scorn or mockery, people we need to keep separate. Thus, learning disability and mental ill-health are both experienced by a minority of people in our society and, though the experiences are very different, the stigmatisation both can meet is the same. It cripples lives. It shuts them off.”

While acknowledging that poems are no substitute for policy or resources, Rogan says “they can connect and can enlighten”: “Politicians keep emphasising the urgency of the need for better mental health services and better understanding – I suspect to relatively little effect. There is a crisis here and it just continues. And reports keep emphasising the need for better mental health education and resources in schools, so that children already struggling can seek help at an early stage…[the poems] can help children who are struggling recognise what might be happening and what might help.”

The collections draw on poetry written or collected over the last four decades including through Rogan’s work, personal connections, creative writing workshops and the Postcards from the Edge project run by United Response.

The poem “Other People” by Shiraz, who is supported by United Response, was part of the postcards campaign: “People are like apples or eggs. They look all right on the surface, but you don’t know what’s going on inside.”

In another poem, “A father to his son (with Down’s syndrome)”, the author, John Mclorinan, describes his child as “wonderfully irreverent, irrelevant, inappropriate, spontaneous, topsy turvey, upside down. vulnerable, perceptive, aware, eager to communicate, willing to please”.

The collections that launch today, writes United Response’s director of policy Diane Lightfoot in the illustrated book that contains them, “shine a light on those who too often remain unseen in the shadows and on the fringes of our society”.

The poem below is by Rogan, written from the perspective of his late sister Kim. The poet explains: “We often went out together. Some of the words and phrases above are Kim’s own. Somehow she had to make sense of the way people looked at her, in the street, or when she entered a public room.”

Shall we go for a walk ?
When I go for a walk people look round at me.
Will you come too ?
Will you hold my hand ?
They look round at me. There’s something wrong.
Will you come too ?
Perhaps I’ll put my ear-phones in and play my music extra loud.
I am going for a walk. What’s wrong ?
Will you come too ?
Will you hold my hand ?

poems-for-bridges-to-disability-poster-inviteA4 copy

* See Poemsfor.org to read more or read about the exhibition opening times here.

Posted in Disability, Learning disability, media & communication, Mental health, Music & arts, Uncategorized | Tagged , , , , , | 1 Comment

Bittersweet birthday for landmark disability law

“Laws are all very well, but it’s people’s attitudes that need to change.” This comment from actor and Mencap ambassador Sarah Gordy pretty well sums up opinions about the impact of the Disability Discrimination Act (DDA) 1995.

The act, 20 years old this autumn, was regarded as weaker than hoped for by campaigners – not least because its ideals were hard to enforce – and it was replaced by the Equality Act 2010 combining all anti-discrimination legislation under one law.

Back in 1995, beginning my working life, I remember talk and action relating to the most visible aspects of the new law – the installation of ramps in the workplace, for example, and accessibility on public transport.

But while such physical impact of the landmark law may be easy to spot in terms of the act’s legacy, what of the law’s less tangible elements, such as cultural attitudes to disability? Then there are the current welfare reforms and austerity measures that threaten to undermine the progress of anti-discrimination legislation and human rights.

Recent research, such as a report by Demos and Scope, Destination Unknown, outlines the disproportionate effect on disabled people of cuts to benefits including Disability Living Allowance (DLA), Employment and Support Allowance and housing benefit. Other reforms include the closure of the Independent Living Fund (ILF) and changes to unemployment benefit.

Speaking to disability campaigners and activities for a Guardian piece recently was a good litmus test for the act’s legacy. For example, Debbie Domb, of Hammersmith and Fulham Disabled People’s Organisations Network, “welfare cuts are pushing us further out of sight to the margins of society”. Activist Wendy Perez of LDA (Learning Disability Alliance) England says disabled people are now “treated like scroungers and as people who just take”: “In the last few years it feels like things have gone backwards. There used to be a lot of hope; but now it feels like hope is gone.”

As mental health campaigner Lol Butterfield, who has blogged on this site, says: “The Disability Discrimination Act has provided protection and support for people experiencing mental health conditions but we can never become complacent. We must always be reviewing its use and strength in these times of discrimination against the mentally ill. I have witnessed many positive changes within mental health services and society over all these years. But sadly we still have a long way to go.”

Baroness Jane Campbell, crossbench peer, disability rights campaigner, chair of the All-Party Parliamentary Disability Group, adds: “I was extremely privileged to be part of shaping and helping implement the Disability Discrimination Act (DDA). This brought rights into disabled peoples’ lives, gradually replacing the culture of welfare and charity. Sadly, the momentum was never maintained as we had dreamed.

For Clenton Farquharson, disability and equality campaigner and director of community interest company Community Navigator Services, the DDA meant suddenly he was not longer invisible: “I had a right to be noticed…But 20 years on, sadly, there is still no monitoring or enforcing of the Act, leaving us to fight as individuals for our legal rights — and that is a daunting, expensive, and dispiriting process.”

The DDA still symbolises a turning point for disability rights but while it was launched in a hopeful fanfare, two decades on for many people, the legislation rings hollow.

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