Development and disability: new report urges action

Hazrat Bilal and family, Bangladesh (pic: Sightsavers)

Hazrat Bilal and family, Bangladesh (pic: Sightsavers)

Hazrat Bilal from Narshingdi, Bangladesh, has been blind since birth, but it was only in 2008 at the age of 33, with support from Bangladeshi charity Action for Blind Children, that he was officially registered as permanently disabled. That led to more support from services for the visually impaired; Hazrat got to know other people with sight problems and began to gain confidence.

The 39-year-old now runs his own grocery shop and has helped form a self-help group. It was only after help from the local charity, a partner of international charity Sightsavers, that his life was transformed but if more international development and aid plans were disability-inclusive, there would be many more stories like Hazrat’s.

One billion people all over the world – 15 per cent of the population – have a disability, according to the World Health Organisation. Of that total, 80 per cent live in developing countries.

Despite the fact that one of the eight Millennium Development Goals that world leaders agreed in 2000 was that every child should have a full primary education by 2015, more than a third of the 57 million children worldwide missing out on school have disabilities (see this stunning picture story about blind schoolchildren in Uganda). It seems incredible but disability was not included in the Millennium Development Goals.

Disabilities contribute to global economic, political and social development but it is well documented that development programmes overlook disability issues. That may change if a new report by the International Development Select Committee on disability and development has any impact. Today’s report urges the Department for International Development (DFID) to strengthen its work to include people with disabilities and calls for a focus on disability as a development issue.

The report’s recommendations echoes some of the actions outlined in international charity Sightsavers’ Put Us in the Picture campaign. Launched last year, the campaign calls on policymakers and politicians to include disabled people in international aid and development plans, highlighting the links between disability and poverty.

Specifically, the campaign says the government must ensure people with disabilities participate in, and benefit from, international development programmes and must talk, listen to and work with people with disabilities and their families. It also argues that DFID staff should be trained to include people with disabilities in their work.

You can support the Put Us in the Picture campaign here or follow it on Twitter with the hashtag #InThePicture

Posted in Disability, Education, Employment, Health, Housing, Learning disability, Poverty, Social exclusion, Uncategorized | Tagged , , , , , , , , , | 1 Comment

In style and inclusive

Natalie Birch, left, and Jazz Nightingale at a Find My Style session (pic: Flamingo Foundation)

Natalie Birch, left, and Jazz Nightingale at a Find My Style session (pic: Flamingo Foundation)

Disability and dress sense aren’t mutually exclusive. Take the first-ever New York fashion week model to work the runway in a wheelchair. It’s an obvious (and frequently made) point but, as wheelchair-using model Danielle Sheypuk said during her first New York Fashion week, people with disabilities are consumers of fashion.

There’s already plenty of good debate out there about the fashion industry’s attitudes to disability (see also the BBC’s Britain’s Missing Top Model) but alongside the more high profile attempts at awareness, it’s important to see some smaller, community-based projects aiming for change from the ground up.

A charity-led project recently launched in Hertfordshire, hoping to change preconceptions about fashion and disability and encourage young adults with physical and/or learning disabilities to be more confident with their style.

The Flamingo Foundation charity has launched Find My Style with Hannah Jean, a fashion stylist and image consultant.

Stevenage teenager Jazz Nightingale took part in the first fashion styling session recently. Jazz, who tried a session at Oaklands College in St Albans. The 19-year-old says “I was interested in the session because I like to follow fashion just like other young people. It helps me express myself and my favourites are patterns, sparkly clothes and scarves….The session with Hannah helped me think about what sort of styles are on trend at the moment and what would suit me. Learning how you could alter your clothes to suit your own needs was great too. It really helped boost my self-confidence.”

Natalie Birch, also 19, has a learning disability and while she admits she is “happiest in hoodies, t-shirts, trainers and joggers”, she says the styling session gave her fresh ideas about style. She ends, “The fashion industry could do more to support disabled people by using more disabled models in magazines.”

The project was funded by London bar Embargo 59 with proceeds from a fundraising cocktail evening during London Fashion Week in February.

* Read more about the sessions here or contact info@flamingofoundation.org to run a session for a group of young adults

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Ageing and art: tackling isolation among older people

Photographer-led workshop, part of the Meet me at the Albany project

Photographer-led workshop, part of the Meet me at the Albany project

One in six of us – that’s 10 million people in the UK – are over 65 years old. By 2050, this number will have nearly doubled to around 19 million, or one in four, according to government figures.

In a recent Age UK survey, more 77% of respondents said they are looking forward to living longer but 91% said something needs to be done to help us all lead a better later life. The survey of 1,480 adults also suggested that most of us (83% of those questioned) believe negative perceptions of later life must change.

The onus is largely on health and social care organisations – hospitals and care homes – to improve the treatment of older people (not least as cuts decimate support for the most vulnerable). But communities themselves and some innovative local projects are also doing much to tackle social isolation and change attitudes.

One unusual scheme in London is doing just that. I know the Albany arts centre in south east London through the work of the fantastic charity Heart n Soul, one of almost 30 groups that use the venue as a base (read more about Heart n Soul in this previous post).

The centre is now hosting a creative day club for the over 60s – the kind of stereotype-smashing thing that sticks two knitting needles up at anyone who dares assume day care for older people is about flower arranging and endless cups of tea.

Proving that older people can be just as innovative, artistically edgy and downright clown-like as their younger counterparts, the Meet me at the Albany project involves everything from circus skill tasters, to neo soul music performances and spoken word sessions with “poet from the pub” Simon Mole and fellow leading wordsmith Malika Booker.

The image above is from a recent workshop with photographer Manuel Vason, an artist who sees his practice as a constant battle against the impossibility of reaching ‘presence’. Think cutting edge rather than Kodak moment.

The project is produced by the Albany and participatory arts company Entelechy Arts, which has worked for more than two decades with people in care, younger people and those with learning difficulties and complex disabilities. It is also a direct response to the issue of loneliness among our ageing population and has been created with the support of Lewisham council’s adult social care staff “to ensure the effective dovetailing of the programme with targeted provision for those with greatest need”.

As well as creative workshops and performances from established artists, participants can have a home cooked hot meal and drinks. Sessions take place every Tuesday at a cost of £6 (all materials are included in the price and there is no charge for personal assistants and carers). The scheme is targeted – rather wonderfully I thought – at “anyone over 60 who’d like another place to call home”.

At 80, Velda is the sole carer for her husband Henderson who recently had a severe stroke. She is fully signed up to the Albany ethos: “[It's]…good to leave your home, to get away from your four walls and come together, use your imagination and do things that are worthwhile rather than just housework. I enjoy making new friends – people you never knew before. [My husband has]… known me for 51 years and he never knew I could draw.”

Just last week Age UK launched its Love later life campaign encouraging people to think differently about getting older, and demonstrate that older people have a valued role in society (see clip below).

The campaign urges us all to think that it’s never too late to try something new. Down at the Albany, Velda and her peers are ahead of the game.


“Ageing is not an illness”: Age UK’s new television advert

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Video: we need to change how we support and see people with learning disabilities

After writing about the avoidable death of Connor Sparrowhawk for the Guardian and posting on this blog, I wanted to share this short video from Gary Bourlet from self advocacy group People First England.

As Gary says: “A young man who was looking forward to the rest of his life died in a unit without any support…He should have had the right support at the right time. This is happening not just to Connor, but to other people who have been in units before and we want to see these big institutions, asylums closed so people like Connor could be part of society and communities we all want to live in.”

You can read more from the self advocacy group on Connor’s death and the need for change here.

* The “Connor Manifesto” outlines what “justice for LB” looks like (Laughing Boy was Connor’s nickname). You can find out more about the campaign by following #JusticeforLB or @JusticeforLB and @sarasiobhan on Twitter, or checking out the 107 Days site and Sara Ryan’s blog.

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Papers, policies, progress and people

While researching a recent piece about the preventable death of teenager Connor Sparrowhawk in a specialist NHS unit, I re-read a lot of old – very good and still very relevant – policy and reports.

As the piece yesterday stated, an independent report found 18-year-old Connor’s death at a Southern Health NHS Foundation Trust assessment and treatment unit was avoidable – reigniting criticism of care for people with learning disabilities.

But for more than 20 years – from 1993′s influential Mansell Report to its 2007 revised version, to the 2001 report Valuing People and the 2006 Our Health, Our Care, Our Say white paper, it’s been clear what “good looks like”.

I started this blog specifically to look at good projects, people and places, mostly related to social care. I spend some of my time finding out and writing about the good stuff that goes on – it was what I was doing before I turned to “the Connor Report“. It was a cataclysmic shift from one extreme of care to another (that brilliant, easy read version of the report is from Change Peopleby the way).

I know some brilliant folk who support people with learning disabilities and complex needs. I’ve seen first hand some of the excellent and groundbreaking support that exists for autism, learning disability and for people with challenging needs. My sister’s benefitted from the right support (albeit after a bit of a fight).

Yet despite the good practice, great intentions, campaigns, official frameworks and guidelines and reams of evidence, the pace of change for people with complex needs is slow. And poor practice remains.

When you find out about the experience of Connor’s family – his mother Sara Ryan and stepfather Richard Huggins – it is impossible not to compare it with what’s meant to happen.

Below, are just three areas I very quickly plucked from some of the papers I’ve been revisiting:
- commissioning of care services
- the concept of personalisation (tailoring care to the individual rather than a “one size fits all” approach)
- the wider issue of the status of people with learning disabilities in society (something that angers me enormously).

The gap between the rhetoric and the reality – most notably when it comes to people with “challenging behaviour” and complex needs – is clear. Cast your eyes over these “then” and “now” juxtaposed extracts and comments.

Then – commissioning of care services:
Mansell Report 2007 :
“Combining the different elements of services to ensure that people with learning disabilities whose behaviour presents a challenge are served well is the job of commissioning. Models of good practice have been demonstrated and service providing organisations committed to good practice exist. However, in the period since 1993 development has not kept pace with need. Placement breakdown continues to be a widespread problem in community services; people are excluded from services; assessment and treatment facilities cannot move people back to their own home; some of the placements eventually found are low value and high cost. What is it that commissioners need to do to tackle these problems? …Failure to develop local services threatens the policy of community care. Doing nothing locally is not an option. Out-of-area placements will `silt up’ and reinstitutionalisation (through emergency admissions to psychiatric hospitals or via the prisons) will occur. Special institutions and residential homes for people whose behaviour presents a challenge will be expensive but of poor quality and will attract public criticism. Overall, the efficiency of services will decrease because of the widespread lack of competence in working with people who have challenging behaviour. Commissioners will have less control over and choice of services. Individuals, carers and staff will be hurt and some individuals whose behaviour presents a challenge will be at increased risk of abuse. Staff will be at increased risk from the consequences of developing their own strategies and responses and managers will be held accountable where well-intentioned staff operate illegal, dangerous or inappropriate procedures.”

Now – commissioning of care services 2014:
Sara Ryan: “How can the commissioners not do anything [with reference to why assessment and treatment units are still commissioned]…If you commission a young person to staying in a £3,500 a week unit, then it is your duty to go and make sure that is worth it.”
Richard Huggins: “Commissioners commission public services on our behalf..Clinical commissioning group decide between competing NHS provision, so you can’t have model like that [where you buy a service and then when it goes wrong] say ‘well it’s not our fault’.”

Then – being ‘person-centred’
Valuing People, A New Strategy for Learning Disability for the 21st Century (2001) :
“A person-centred approach will be essential to deliver real change in the lives of people with learning disabilities. Person-centred planning provides a single, multi-agency mechanism for achieving this. The Government will issue new guidance on person-centred planning, and provide resources for implementation through the Learning Disability Development Fund.”

Now – being ‘person-centred’ 2014
Sara Ryan: “There is no personalisation in these units…”
Richard Huggins: “We thought they’d say ‘this is what Connor needs this is what we should do’. How that would be achieved, we had no preconception. But we thought he’d come back with a better plan, we wanted an outcome that would suit Connor.”

Then – the status of people with learning disabilities in society
Valuing People (2001) :
“People with learning disabilities are amongst the most vulnerable and socially excluded in our society. Very few have jobs, live in their own homes or have choice over who cares for them. This needs to change: people with learning disabilities must no longer be marginalised or excluded. Valuing People sets out how the Government will provide new opportunities for children and adults with learning disabilities and their families to live full and independent lives as part of their local communities.”

Now – the status of people with learning disabilities in society 2014
Sara Ryan: “There is a prevailing attitude about learning disability that somehow, if you’re born ‘faulty’ you cannot expect to lead a full life. What is really upsetting is fact that Connor and most young people I know are learning disabled have so much to contribute, and so much people can learn from them, but people can’t see any value in them and don’t see them as human beings, I find that really distressing.”
Richard Huggins: “There are three issues here. What happened to Connor – the care he received and how he was treated, which is still not accounted for – the way Southern Health Trust behaved as an organisation, and then there is a more general issues about the status of learning disabled people in British society.”

I could add more examples, but I think the contrast is clear.

There is a strong and growing momentum for action following Connor’s death. There is also anger but, as someone wisely told me yesterday, the anger can be channelled into action. There is also, as one chief executive of a care organisation tweeted about Connor earlier today “an onus on all of us who care to stand together alongside families seeking justice”.

* There is a “Connor Manifesto” which outlines what needs to happen next and you can find out more about the campaign on the 107 Days site and Sara Ryan’s blog.

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Why did Connor Sparrowhawk die in a specialist NHS unit?

Connor Sparrowhawk (photo: Sara Ryan)

Connor Sparrowhawk (photo: Sara Ryan)

The death of 18-year-old Connor Sparrowhawk at Slade House assessment and treatment unit was avoidable, according to a recently published report. What happened to Connor, who was admitted to the specialist care in Oxfordshire a year ago today, has reignited debate about the use of these units – Winterbourne View was a privately run unit where the abuse of patients with learning disabilities was exposed by BBC’s Panorama in 2011.

The full piece I wrote for today’s Guardian is here – please read it alongside the words of Connor’s mother, Sara Ryan, who describes the fight for justice for her son.

From today for 107 days (the length of time Connor was in Slade House), there is a campaign to raise awareness of what happened to Connor. Building on the palpable sense of anger and injustice, it is hoping to push for action.

You can follow the campaign on Twitter @JusticeforLB #JusticeforLB. Connor’s mother’s blog is here.

I’m posting some additional contributions from a few interviewees here as there wasn’t space in the published piece.

Sandie Keene, president of the Association of the Directors of Adult Social Services, stressed the fact that it’s not just social care commissioners who are responsible for the continued use of units like Slade House:
“Commissioning these days is a complex environment [it’s within] NHS England, clinical commissioning groups, social care commissioning.” Keene adds that the solution is partly “to find better ways of cascading the best practice”.

Mark Neary won a legal fight to get his autistic son, Steven, out of the kind of care Connor was in. He explained what these units are like for individuals and families: “After Steven’s experience in an assessment and treatment unit where he was unlawfully held for the whole of 2010, I question what the purpose of these places is. In our case, the judge remarked about the lack of assessment when Steven was first taken there and there didn’t appear to be any treatment taking place. The unit appeared to me to be a holding container. And a very expensive holding container at that. The other aspect of the unit that shocked me was how much families were excluded. On a major medical document, I wasn’t even mentioned as Steven’s next of kin – his keyworker at the unit was. To have my whole 20 years experience of Steven negated was quite terrifying. And worst of all, it must be awful for the person detained there to be cut off from the people who have cared for them all their life. Steven has autism. Does that need treatment? And even if it does, is it good for a person for whom routine is everything to be kept in one of these places?”
* You can read Mark’s blog and his stories of his son’s time in an assessment and treatment unit

Jenny Morris, an independent consultant who advised the previous government on disability, puts the lack of progress on moving people out of units and into the community down to two things: “There are negative attitudes in society in general toward people with learning disabilities plus ignorance or lack of understanding about how denying people the ability to communicate their needs, and failure to meet their needs, leads to “challenging behaviour. When things go wrong the response is to write new or updated standards and codes of practice etc instead of paying attention to how to recruit, retain and value people who can – because of their values – provide good care and empower people. If we paid more attention to the characteristics of people who provide good care, plus how to support them with training and good working conditions etc, and less to problematising the needs of people with learning disabilities we might not see the kind of institutional disablism that persists in so many services.”

A senior contact, who didn’t wish to be named but who runs a large care organisation, talked about the closure of long-stay hospitals and how what’s developed in their place is almost as bad: “We closed closed them and some pretty similar things have replaced them. The policy context for working with people with challenging behaviour has been clear for over 20 years..the best way to develop servives for people with challenging behaviour is individualised services around the person and it needs to be small scale local and in the community. It has been out there [ie known about and practised by the best care providers] for years, but seldom happens.”

I interviewed Katrina Percy, the chief executive of Southern Health, which ran the now-closed unit that Connor was in. Southern was criticised in an independent report into Connor’s death and is currently being investigated by health regulator Monitor.

Asking why units like Slade House exist, I mentioned the buck passing that families feels goes on between ‘stakeholders’ – with commissioners of services and clinicians complaining about the lack of community-based alternatives, and service providers for people with learning disabilities suggesting commissioners don’t know about, or cannot afford, existing alternatives. Percy replied: “I feel it’s got to be a joint piece of work, so often the experts [who sit on commissioning boards] come from our organisation, but the commissioners need to make the decision that they wish to commission this new [community-based] model of care”.

I asked if concerned the trust is worried about losing its healthcare licence given the critical reports (the report into Connor’s death and inspections by the care sector regulator, as the piece today explains). Percy responded that she did not know about a potential breach of licence, but said the trust had been in discussion with Monitor and “the organisation overall has an awful lot of strengths”. She added: “One of the hardest thing in my job is about enabling focus where things go wrong, but not allowing that to pervade a very big organisation where lots of things go very right [where] in fact we’re seen as leading edge and my job as chief exec is to absolutely make sure that we get that that balance and prioritisation and focus right.”

On the calls for her resignation, Percy replied that she would like to “meet the family and talk to them directly so they actually see what I’m like as an individual and as a chief executive.” She added: “There are many things we are very proud of in this organisation and we provides services to millions of people and therefore I think my best place is to help us continue to improve services for every single person who needs to use them.” Asked to clarify, Percy replied: “I don’t see that it’s approporiate that I would resign, no.”

Responding to what she would say if she met Connor’s family, specifically his mother Sara Ryan, Percy said: “I would apologise unreservedly that her son and her family were let down by our services…I would ask her when she feels ready, if that is what she would like to do, to continue to campaign and work with us to design a set of services where this will never happen again.”

* Seven members of staff who worked at the now-closed Slade House are subject to a “human resources investigation”, with the first disciplinary hearing due to take place this month. In an email after the Guardian piece went to press, Southern Health confirmed “three members of staff have been suspended”.

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Which way now for public services in Scotland?

In September, Scottish residents will vote in an independence referendum. I asked experts working in housing, local authorities, social work, charities and public health what impact a yes vote might have on social policy – for the full piece, head over to the Guardian.

The piece looks primarily at social policy, but I’m including two important comments that look at related issues of economic and business impact:

Jeremy Peat, director, David Hume Institute
The referendum campaign to date is characterised by masses of material from the interested parties on both sides, but still an inadequate flow of clear information and evidence-based and objective analysis. On the economic front the key, inter-related, issues are regarding currency and the extent of enhanced freedom on monetary and fiscal policy that independence would bring. The choices on the currency front are fourfold.
If a sterling currency union were agreed – not impossible despite the Chancellor’s protestations – then monetary policy would be set by the Bank of England in the interests solely of the rest of the UK. There would be very severe constraints imposed on the fiscal front, both on the level of deficit and (some) specific taxes and policies. Any ‘sterlingisation’ – unofficial use of the pound – would again mean severe constraints, this time to keep the international markets happy. There would be a host of other risks.
1Adopting a new currency would allow more freedoms in principle, but in practice a really tight policy stance would be required if the currency were to be pegged to sterling (as would make sense) at least until credibility in the markets was achieved. A new Scottish currency is seen by many nationalists as the real route to independence. There is logic to this, but also heavy costs in terms of getting there and staying stable – especially as this would be a petro-currency and liable to high volatility.
2Adopting the euro used to be Plan A, but ‘events’ in recent years have reduced its popularity. If Scotland took up the euro, then monetary policy would be set by Europe and fiscal policy would be mightily constrained.
There is no straightforward solution on currency that also achieves strong policy independence. Another key point to note is the fact that the rest of the UK is far and away Scotland’s strongest trading market. Any outcome that introduced currency uncertainty into that trade and/or heavy transaction costs would be deeply unwelcome. Finally, it is important that a degree of certainty be achieved ‘ere too long, to reduce the risks of corporate and capital flight.

Liz Cameron chief executive of the Scottish Chambers of Commerce
“The full implications of Scottish independence would, of course, not be known until post-referendum negotiations were completed between Scotland and the rest of the UK and between Scotland and international bodies such as the EU. Social policy would not be known until the outcome of elections for the government of an independent Scotland was apparent. Equally, the full implications of a ‘no’ vote are also unknown as the outcome of the 2015 General Election is a variable, as is the result of any future UK-wide referendum on the UK’s continued membership of the EU. What can be said with certainty is that Scottish businesses will continue to adapt to change, from whatever source, just as they have done with the advent of devolution and with the effects of the financial crisis and recession.
“Whatever the outcome of the referendum, Scotland will continue to face major challenges as the economic recovery gains momentum. Skills issues are important for businesses and we are keen to ensure that potential skills gaps are addressed before they result in barriers to growth. Similarly, businesses are keen to ensure that young people do not get left behind as the jobs market continues to improve. Scottish Chambers of Commerce is currently working with businesses across the country to identify new opportunities for young people to gain employment at a suitable skill level within Scotland’s small and micro businesses. Scottish businesses are ambitious for growth and we need to make best use of our most valuable resource: our people. Some of the relevant powers are devolved whilst others currently rest with the UK Government. Either way we must ensure that businesses are supported to grow, to create wealth and jobs and to secure Scotland’s economic success.”

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British-Brazilian music project tackles social inclusion

Research from Goldsmiths University recently suggested that wealthier people are more musical. While it’s obvious that higher income families find it easier to stump for private piano lessons and expensive instruments, music has a place in boosting inclusion and there are some great community-based projects that not only make music more accessible, but aim for social impact in the process.

Take the Sage Gateshead, which is halfway through a four-year cultural exchange scheme with a Brazilian government programme called Santa Marcelina Cultura (Santa Marcelina Cultura manages São Paulo state government’s music education and cultural inclusion project – Projeto Guri). The project aims to improve arts education and boost social inclusion in both Sao Paulo and the North East.

The scheme is funded by the British Council’s transform arts and creativity programme. The Sage’s musicians and teachers have travelled to Sao Paulo to find out how music, learning and social inclusion are combined in Brazil, while a Brazilian team came to the North East last year. Below, two participants – one from each country – explain the benefits of their innovative musical scheme:

Kat Davidson from the Sage Gateshead

Kat Davidson from the Sage Gateshead


Kathryn Davidson, 29, from Fenham, Newcastle, folk strand leader, learning and participation, Sage Gateshead
“We’re about to enter the second leg of the second year of the project. Each visit is around two weeks long and involves observing practice, learning from each other, sharing ideas around social pedagogy and music education, and teaching. The two weeks are incredibly intense and informative.

For me, the first leg in 2012 was about getting to know Guri and what they do and weighing that up next to what we do. There are many differences but also many similarities in our own teaching styles but there is always the underlying theme that everyone deserves high quality music education. I was very proud when the Guri team came to Gateshead, I was proud to ‘show off’ the Learning and Participation department. The second trip to Sao Paulo was where I really began to understand my role and understand how the music that I teach and that I love is relevant.

We had a ceilidh for over 200 Guri young people and in the run up, the Guri staff reflected that they don’t use much, if any, Brazilian folk music. Much of it disappeared when the Portuguese invaded, and the post Portuguese music is often full of religion. What some people said is that seeing how British folk music can be used to teach rhythm, pulse, work in choirs, to teach intervals, to be a story for no other reason than to sing a good story, will make them investigate further their own traditions.

The ceilidh was my most favourite moment of both my times in Sao Paulo. My Brazilian colleague Paulo and I co-led this ceilidh even though he has never ‘called’ ceilidh dancing before and I speak minimal Portuguese! We had a ceilidh band made up of Sage Gateshead musicians and we had guest spots from some of the youth groups that we’d been working with… a wind band of young Brazilian musicians on saxophone and horns playing traditional Northumbrian music. Over a cold beer afterwards we all reflected that our own traditions are so close that they are normal, they’re ordinary. Placing the ordinary in an extraordinary context allows it to be fresh again.

The main challenges are in the circumstances that the young people who come to Guri live in. The Guri social team, who are absolutely outstanding, work with each and every young person to enable them to get the best from their learning, to fully engage with the programme. Sometimes that means holding their place for them for a few weeks whilst they have time to deal with the outside world. Sometimes it can take the social team visiting their home and working with their family, and sometimes it can be as simple as making sure they’ve had a good meal in their stomachs so that they can concentrate.

Often these young people will travel three hours to Saturday rehearsals, their transport is paid for and they receive meals and snacks to sustain them. Sao Paulo is a wonderful city but like all cities it is full of contrast, of huge wealth and incomprehensible poverty.

My own personal learning was huge, from trusting the music that I am passionate about to my confidence in my own teaching. Lots of the wider learning is still on-going, ‘what is a democratic music education?’ has become the research question. Both Sage Gateshead and Guri Santa Marcelina promote social inclusion and help people from different background to mix. How many Brazilian teenagers get the chance to work with a group of musicians from the North of England?

How many teenagers from Gateshead get the chance to work with musicians from Brazil? But it’s more than social inclusion, it’s about the promotion of social mobility and the belief that if you seize the opportunities offered to you, and you work hard, then there is no reason that you can’t succeed. If we can instill that within music education, be that in the formal classroom or in an out of school club, then that learning stays with the young person and seeps in to their self belief in English or Maths and they believe that if they set their mind to it and work hard they can accomplish anything.”

Daniele De Almeida

Daniele De Almeida

Santa Marcelina student – Daniele de Almeida, 17
“I am currently enrolled as a music student at Guri Santa Marcelina (GuriSM) education programme and member of GuriSM Youth Choir, an auditioned choir in the institution. The Sage Gateshead team was invited to work with GuriSM Youth Choir in October last year.

The exchange project between GuriSM and Sage Gateshead is focused on “what is a democratic and inclusive music education?” and also involves many diverse activities like workshops, seminars and performances. A real highlight for me was when we held and took part in a Ceilidh dance. There were so many people and so many English tunes. I really felt as if I was over here in a traditional English Ceilidh.

During the exchange I have found the most challenging moments the discussions around democratic and inclusive music education, particularly around the questions of what it is and how to promote it? It is a very emotive subject and you can explore it very deeply. It was also the first times students had participated in discussions about education in Guri Santa Marcelina. The size of both projects (Guri Santa Marcelina and Sage Gateshead) means the subject and the work that goes on is much more complex than I thought. However, this complexity drives both institutions to look for solutions and not give up.

Projects like this foster the contact among people of different backgrounds. With such contact I believe the horizons broaden; and this encourages inclusion to take place.

I believe that this sort of music exchange between great partners brings about knowledge of culture from different places. I think collectively it can better inform citizens than if you are trying to do it by yourself. It is much more than just entertainment!

One of the moments that sticks in my head is that one day Ed Milner, head of music learning at Sage Gateshead, was on the bus with all of us students and we asked him what he had enjoyed the most. He answered “You all!”

It has been an amazing, life-changing experience.”

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He should never have died

I launched this blog as a platform for some of the excellent, uplifting, often unsung, good practice in social and public policy.

In contrast, this week I’ve been finding out about some of the worst care possible.

The opposite of “care”, in fact.

A host of very adept, passionate bloggers and campaigners have been demanding not only answers, but action after the death last year of Connor Sparrowhawk. Connor, 18, died while “being cared for” at a Southern Health Trust in-patient unit in Oxfordshire for people with learning disabilities.

As Connor’s mother Sara has said, “He should never have died and the appalling inadequacy of the care he received should not be possible in the NHS.” Sara’s powerful blog includes links to bloggers and commentators whose words are well worth reading.

I had to share Sara’s beautiful and powerful slideshow here; please watch it if you’ve not seen it before. And if you have already seen it, watch it again to remind yourself of the very real people and families behind the astonishing inequalities in care experienced by people with learning disabilities.

Much has been written about Connor, and more will be – although clearly we need more action than words alone – but taken together, Sara’s slideshow and these stark words from the independent report published last week tell you much of what you need to know: “the death of [Connor] was preventable”.

* Follow #JusticeforLB on Twitter @JusticeforLB
* Read more on Sara’s blog and sign up for email updates here

Posted in Blogging, Disability, Health, Learning disability, Social care, Uncategorized, Young people | Tagged , , , | Leave a comment

Creative minds drive debate about learning disability art

Gold Run, an opera at Glyndebourne (pic: David Illman)

Gold Run, an opera at Glyndebourne (pic: David Illman)

“People say to me how great it is that I ‘help’ people with learning disabilities to make their own films but I don’t do this out of charity. Far from it. I do what I do because I am excited by the amazing talents of the people I work with. Filmmakers with learning disabilities have an ability to offer a view of the world that I don’t. I couldn’t even dream of the scripts that our members write.” So says Will Sadler from Beacon Hill Arts in Newcastle, reflecting just one view about “learning disability arts”.

It’s the same sentiment expressed by Richard Phoenix, who runs music organisation Constant Flux, and who I’ve quoted elsewhere on this site : “Often when I talk to people about working with people with learning disabilities in music I encounter the “Aww…. That’s so nice” attitude, which isn’t intrinsically wrong in any way but it seems to me to represent a feeling that people with learning disabilities are only capable of emotionally neutered art, of things that are ‘nice’ and ‘happy’ which from my experience is completely off the mark.”

So what does that phrase “learning disability arts” mean to the public? What constitutes “good art” is a notoriously subjective and personal view, but what is the quality of work being produced by people with learning disabilities? How is such art produced, judged, presented or received differently to “mainstream” art? How far do non-learning disabled artists who collaborate with people who have a learning disability lead the project – and what standard of art is produced?

The Brighton-based project, Creative Minds, is hoping to lead a much-needed national debate about these kinds of issues. Funded by the Arts Council, Brighton and Hove city council and the John Ellerman and Paul Hamlyn foundations, Creative Minds is run by a committee of learning disabled artists who want to “challenge perceptions of their work being labeled as ‘good therapy’ and have a national discussion about its quality and how that can be defined”.

Horse, watercolour by Carol Chilcott

Horse, watercolour by Carol Chilcott


Leading arts charity Carousel is facilitating the project with some good food for thought already given a platform via the Creative Minds website and the first in a series of conferences will be held in Brighton a week today, on Monday 10 March.

The aim is for learning disabled artists to showcase their work and lead discussions about it. The conferences are targeted at their peers, arts organisations, critics, funders, venue programmers and anyone interested in learning disability led arts

Performances, art and discussion includes Action Space London, Chris Pavia and Stop Gap Dance Company, Corali Dance Company, Face Front Theatre Company, Oska Bright Film Festival and Rocket Artists.

Laundry Boy, Face Front Theatre

Laundry Boy, Face Front Theatre

The Creative Minds steering committee explains that “as individual artists and performers we have had our work not taken seriously when we have shown it in theatres, galleries and on stage”. The group’s aim is “to change peoples ideas and perceptions and the way they see us”.

Hopefully the project and conferences will lead to a high profile debate that reaches beyond the learning disability arts sector.

As performer Bethan Kendrick writes on the Creative Minds site, “Having a learning disability informs your art and helps you produce work of a high quality. I have found that my confidence has grown because I perform my work to audiences. Thinking about quality will help you develop your skills, especially as you work with your company and your director. I take my performance work very seriously. This gives me great confidence in my art.”

• The Creative Minds conference is on Monday 10 March, 10am to 5pm at the Brighton Dome, Church St, Brighton (the venue is wheel chair accessible)
• Constant Flux presents the Fish Police on tour from next month, see website

Posted in Disability, Learning disability, Music & arts, Third sector, Uncategorized | Tagged , , , , | Leave a comment