His initial win was overturned on appeal and is due to be heard in the Supreme Court in June in a move that could, as campaign group Transport for All says, “set a legal precedent for enforceable priority over wheelchair space”. The Equality and Human Rights Commission (EHRC) supports Paulley’s case, and his awareness-raising helped win him the Sheila McKechnie Foundation award for campaigner of the year 2015.
Paulley has won almost all the 40 disability discrimination cases he has launched over the last decade. Paulley, who lives in a care home and uses a wheelchair, is an activist, not a lawyer. He has represented himself in all but three actions, challenging equality and accessibility barriers in organisations from pub chains to supermarkets and theatre firms. He has won around £10,000 in compensation over 10 years, he estimates, by bringing complaints under the Equality Act in the small claims court.
He answers critics who claim he’s motivated by money or that he enjoys being “a bully” – in fact he often donates damages to activist groups and stresses that the compensation amounts involved are “dwarfed by legal fees” – a reference to high-earning lawyers who represent service providers (the small claims court maximum award is £10,000 but discrimination-related claims generally fall between £600 and £6,000).
The full piece on Paulley, who volunteers at a local Oxfam and has fundraised for disability charity the Calvert Trust, is here.
As Ruth Gould, the artistic director of the UK’s biggest disability arts event, DaDaFest, pointed out in an interview I did with her for the Guardian, the latest cuts threaten to make disabled people “more invisible”. The work of disabled artists, as she says, is also at risk, thanks to sharp reductions in funding from local authorities and Arts Council England (Ace).
In 2001, Gould organised a one-off community arts event for Liverpool city council to mark International Disabled Peoples’ Day. As the head of the North West Disability Arts Forum (NWDAF), Gould, who is deaf, argued a single day was inadequate, and designed a groundbreaking week-long festival.
Fifteen years on, DaDaFest is the UK’s biggest disability arts event and Gould its artistic director. The NWDAF eventually adopted the name of the jewel in its crown (“DaDa” refers to the initial letters of each word in the phrase “disability and deaf arts”), so DaDaFest refers to both the festival and its parent charity. Each biennial extravaganza draws 10,000 visitors and participants. It has launched the careers of comedian Laurence Clark and actor Liz Carr, and helped Liverpool win European Capital of Culture 2008.
Last week, as something of a curtain raiser to 2016’s two-week festival in November, DaDaFest held a seminar on the barriers to disability arts for black and minority ethnic people (BME). The awareness raising event complemented DaDaFest’s play, Unsung, recently performed at the Everyman theatre, based on the life of 18th century blind Liverpool poet, abolitionist and disability rights pioneer Edward Rushton.
Gould commends the Arts Council’s Creative Case for Diversity, launched in 2014 to encourage more BME, deaf and disabled people into arts, but fears such efforts are a drop in the ocean. She explains: “We don’t have the disabled people who put people on the stage – the producers, the casting directors, curators, decision makers.” She adds of DaDaFest’s recent BME seminar: “We tried to attract those we see as gatekeepers…[to] look at the barriers and issues and use them to try and influence change by identifying benchmarks that we can reflect onto to see if change if happening.”
As my piece on the Guardian website today explains, community nurses can be employed by NHS trusts, GPs, charities such as Dementia UK or private providers delivering NHS services. However, their numbers are falling. The decline might be attributed to primary care trusts transferring provision to other organisations under the government’s Transforming Community Services programme because those nurses moving to non-NHS providers are not captured in relevant workforce data.
The fall in numbers coincides with healthcare reforms that make their role even more important. “District nurses will be likely to play a significant role in the NHS reforms, particularly around new models of care that shift more care into the community,” according to Rachael Addicott, senior research fellow at health thinktank The King’s Fund.
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.
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
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.”
The MBE recently won by Shaun Webster is, he says “two fingers” to the bullying colleagues who tormented him when he worked in a warehouse some years ago.
You can’t disagree with the 43-year-old’s use of frank language – his deeply unpleasant workmates once used sticky tape to bind Webster, who has a learning disability, and stuffed a rag in his mouth. This was done “as a joke”, he recalls in an interview I did for today’s Guardian. Little wonder he has devoted his life since then to fighting for inclusion and equality.
As explained in today’s piece, the international project worker for Leeds-based human rights charity Change is a sought-after speaker and trainer in the UK and overseas. His work includes advising government departments about inclusive employment, promoting access to sex and health education for learning disabled people and recent visits to Thailand and Croatia to train health, social care and charity professionals about independent living and disability rights.
Shaun talks passionately and persuasively about issues like employment rights and independent living for people with learning disabilities, making the point (usually missed by policy makers and politicians) that the two issues must be seen together; earning your own money and having a role and responsibility supports independence.
Shaun’s current work involves a partnership with children’s charity Lumos, supporting young people to leave institutions and gain independence, choice and control. Linked to that piece of work is the report Shaun wrote, Leaving Institutions, a really great example of a publication written with a clear focus on people (not targets or statistics, or a homogeneous mass) by authors who truly know about and have experience of what they’re talking about.
The entire interview can be read here and the film below is worth a watch too:
Anila Jolly and her older brother Sunil pictured recently
I’m so grateful to Anila Jolly (pictured above, with her brother Sunil) for speaking so frankly about her relationship with her sibling.
As she says, siblings of disabled adults are “largely invisible” to care providers, but their “insight and perspective can be valuable”.
There’s more on these issues in a piece on the Guardian’s social care network today; 1.7 million adults in the UK have grown up with a disabled brother or sister but campaigners say their support needs and caring role are overlooked.
My piece today focuses on the work of Sibs, the UK’s only charity for siblings of children and adults with a lifelong learning disability.
Sibs’ call for greater recognition for this comparatively invisible group is timely given the next tranche of welfare cuts, says its chief executive Monica McCaffrey – “people who don’t have critical or substantial need will have little or no support … siblings will have to ensure people are safe and we want them to have a voice within adult social care.”
In addition, the role of siblings should be seen in the context of Carers Week next week and the are growing calls for families to be fully involved in the care of disabled relatives (take the campaigning LB bill , for example).
You can read more here about siblings’ distinct role and how care providers and commissioners often underestimate their contribution.
Powerful and rarely seen archive images of life in institutional care form part of a new exhibition that opens today.
The history of long-stay hospitals in Wales is the focus of Mencap Cymru’s Hidden Now Heard project that documents life for people with learning disabilities in the region.
The striking shots of the long-since closed institutions include rarely seen images of Hensol Hospital, Vale of Glamorgan, taken by renowned photographer Jürgen Schadeberg in 1967.
Schadeberg’s Welsh photographs range from the surprising to the thought-provoking and the unsettling. They focus on individual faces and personalities at a time when people with learning disabilities were invisible, herded into high-walled hospitals, hidden away for years.
The images hint at stark reality of life in long-term care, reflecting some of the isolation and inactivity that were its hallmarks. They show patients in workshops and in and around the hospital grounds. However, the photographs also depict some of the positive bonds between staff and children in their care.
Hensol opened in 1930 as a “colony” for the care of 100 male “mental defectives” (standard terminology at the time) with buildings added to raise numbers 460 male, female and child patients in 1935. The move towards community care meant that patient numbers eventually reduced and the institution closed in 2003. Some of the buildings are now luxury flats.
The project provokes the public to consider how we care for and treat people with learning disabilities today.
The exhibition, which runs until March at Swansea Museum, is based on oral history testimonies from people who lived in hospitals, their relatives and staff, and is run by and funded by the Heritage Lottery. All the stories from across the region will eventually be deposited in the archive at St Fagan’s, the Museum of Welsh Life.
Phyllis Jones, a patient at Hensol for over 40 years, said of her involvement in the project: “I wanted to tell everyone about Hensol, the good times and bad. They had good staff there but overall I didn’t like living there. I prefer living in my own house”.
Mencap Cymru, which has was involved in helping close many of the area’s hospitals, spent three years researching the project. It wants to record and acknowledge the stories and experiences of former patients and offer people a chance to talk about the past.
Mencap Cymru director Wayne Crocker said of the exhibition: “I very much hope that those who visit will be impressed by the stories they see but more importantly will see the amazing contributions people with a learning disability make to our communities in Wales.”
Anyone recognising the people in the photos or who have stories to tell should contact Mencap Cymru.
You can find out more on Twitter @hiddennowheard or visit the Facebook page.
The organisers, a company specialising in overseas moves, explains: “MoveHub and their partners noticed that families were forced to just throw large volumes of food when they moved abroad – due to customs restrictions – and decided that instead, this food should find its way to people who really needed it.”
The project estimates that the food thrown away during moves across the UK could fill 160 supermarket delivery vans each week. While it acknowledges it “can’t reverse food poverty in the UK”, the scheme is an attempt to “contribute to the organisations helping people get back on their feet”.
Among the charities benefitting from FoodHub is homeless charity Centrepoint.
It is estimated that around 3.5m tonnes of food is wasted every year in the UK and this latest drive is a welcome addition to schemes like the “community supermarket” plan, under which unwanted supermarket food is already re-distributed to needy families.
* This is the last Social Issue post for 2014 – the blog will be back in January. Thanks to everyone who has read, shared, contributed to, commented on and got in touch over the last 12 months, your support’s very much appreciated.
