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.
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
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 email@example.com to run a session for a group of young adults
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.
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.
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”.
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.
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
“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”.
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.
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
How can someone with learning disabilities or mental health issues possibly own their own home? With a long-established but seldom-used form of housing called shared ownership.
The power of the part-rent, part-buy scheme to transform lives is illustrated in a new report, Space to live, published today by social care and housing provider Advance and Disability Rights UK. I was involved in writing part of the report and met home owners like Xenia Kyriacou, who is non-verbal and has complex needs.
Once asked to leave a restaurant after showing challenging behaviour and overturning a table in frustration (she was overwhelmed), only a few months ago, in another local restaurant near the two-bedroom flat she part-owns in east London, Xenia enjoyed a birthday lunch, was presented with a card from the owners and offered a discount on her return.
The change has happened since she moved out of residential care and into her own place.
Home ownership encourages confidence and independence, as was obvious when I met some of the home owners like Xenia and learned more about their experiences. The increased stability can reduce the costs of social care packages and help people get involved in their local areas. The timely report comes as the government considers funding plans for housing for post-2015, including its home ownership for learning disability (HOLD) programme.
Did you know Big Ben isn’t the name of the clock or the tower at the Houses of Parliament, but refers to the great bell inside the building?
How about the fact that the word “parliament” comes from the French, “parler”, meaning “to talk” (and yes, politicians could do with less rhetoric and more action).
These were just two facts my eight-year-old daughter pounced on during a recent family-friendly project at the Houses of Parliament.
This week is Parliament Week, a country-wide series of events that aim to engage people with parliamentary democracy. While the Houses of Parliament is one of the most instantly recognisable buildings in the world and children know its name, what goes on inside it is usually either a mystery or rather dull (unless, my daughter points out, you’re talking about Guy Fawkes).
Our recent visit was part of this year’s Big Draw event, although it reflects the ethos of Parliament Week. It involved an art workshop led by artist Rachel Gadsden to create four new works. Gadsden (who I’ve written about before here and here) is known for disability awareness raising work.
Gadsden’s ground-breaking project – the first time that the public has had the opportunity to contribute to artworks that will form part of the parliament art collection – is sponsored the Speaker’s Art Fund. The scheme involves the artist combining her own art with pieces created by the public in a series of workshops in Westminster Hall. The aims is to create new contemporary images based on mosaics of the UK’s four patron saints, St George, St David, St Andrew and St Patrick, which are in parliament’s central lobby.
Out visit included a “family-friendly” guided tour about the history, architecture and artwork in the Houses of Lords and Commons. The tour, according to my eight-year-old reviewer was “interesting but a bit too long” (I’d have to agree, despite the engaging anecdotes, an hour and 15 minutes with one stop to sit down can be difficult for most primary school pupils).
However, she “liked the information, like hearing that alarm bells sound in some buildings around parliament to call the MPs to vote”. She was loved some of the Tudor portraits after studying the period at school and was intrigued by the Queen’s robing room. Looking around the Commons and Lords has made some rather woolly concepts a little more accessible and real; she spotted the Commons on television recently, commenting that she had stood in the same room as the MPs.
After the tour, we joined workshop members creating everything from pencil drawings to mosaics based on the art they’d seen in parliament. As Gadsden says, “the subject matter is not set in stone and this is above all an ‘imaginative’ project, and participants contributed a range of drawings to which include interpretations, but also creations which express their personal identities.” Now the workshops are completed – participants’ original drawings were photocopied and included within the saints paintings that Gadsden is creating – the artist is working on the pieces and the public and MPs will have the chance to view them next year.
Gadsden, who has the eye disorder retinoschisis and lost the sight in her left eye this year, explains that her work is “underpinned by the notion of disability, viewed from a positive perspective.” As she says, “I just take every day at a time and concentrate on my inner vision rather than what I see with my eye”.
Gadsden has always championed the belief that disability is not regarded as a barrier to success; in 2007 she became the first contemporary artist in residence at Hampton Court Palace and was commissioned for London 2012 by Unlimited, the arts and disability programme launched for the four-year arts programme, the Cultural Olympiad.
The artist adds: “I hope that my artistic practice stands as an example of the importance of the right of freedom of expression: addressing issues relating to disability and, by doing so, contributing to the process of bringing about cultural change. So this commission has given me the opportunity to not only collaborate with the public at large to create the new ‘Saints’ paintings…but also to give a new younger audience the opportunity to visit parliament for the first time, and to have the chance to see the House of Lords and Commons and learn about the procedure of parliament as part of the overall process…it is vital for young people to have the opportunity to understand parliament”.
Given the current debate about increasing social mobility and aspiration, part of the solution is not only making “authority” more accessible – encouraging young people and people with disabilities to visit the, for example, the government’s seat of power, – but inviting people, once they set foot inside, to take part in something as creative and inclusive as an arts workshop.
* Rachel Gadsden tweets at @rachelgadsden
* Information about parliament’s education service is here, including its latest plans to create a dedicated education centre for children and young people.
* Social care provider Dimensions is hosting an accessible Question Time event this week, which I’m involved in, more details here
These candid images of caring are among the photographs in a new exhibition that focuses on the role of carers and disability.
Capturing the bond between disabled children and young adults and their parents, professionals, siblings and friends, tonight’s show from the charity Netbuddy raises awareness of the challenges faced by young disabled people ahead of the UN’s Children’s Day on Wednesday. The photographs are a refreshing take on the images of disability which usually appear in the public domain; although representing the difficulties experienced by the children and young people and their families and carers, they also present disability and caring in a family and social context.
The Faces of Caring exhibition by Netbuddy, an online community for parents, carers and professionals looking after people with special needs, includes photographs of people with complex medical needs and a range of learning disabilities.
* Faces of Caring starts at 6pm today The Hub, Tanner Street, London SE1. For more information, contact Netbuddy
My experience proves the benefits of volunteering for people with autism. I was born in 1959 and diagnosed with autism in 1963, at age four. I was one of Sybil Elgar’s first pupils at her progressive school. She was a pioneer in autism and helped develop my language and communication skills.
I then attended a local primary school in Edinburgh, where my mother and I moved, and a mainstream secondary school in London when we moved back to England in 1972. Art was my strongest subject (I passed several O Levels) and I studied furnishing design and textiles at the London College of Furniture. I got a diploma in art and design. I took more courses after that at a local art college and learned things like etching and print making. My most recent works are computer generated greetings cards (see the website).
Following a traumatic event in 2008, I developed severe depression and anxiety . After some time attending a psychiatric unit, social services support and help from my GP, a social worker suggested volunteering and I was put in touch with Volunteer Centre Camden.
It was through the volunteer centre that I started working at the Holy Cross Centre Trust in July 2011. It is a secular organisation in King’s Cross, London, which supports mental health recovery as well as homeless people, refugees and asylum seekers.
I hadn’t volunteered before although I’d had some experience of work. The place where I worked previously was a company providing unpaid employment for people with mental health issues and was run as a social service. The aim was to manufacture and distribute large volumes of greeting cards to the mass market but I wasn’t happy there. The tasks I was involved in were printing and packing greeting cards and using Photoshop on a computer for designing cards for later use and batch production.
I did not get satisfaction there as I was mostly restricted to printing other people’s designs and this did not allow me to express my own ideas. Their bias was to produce Christmas cards and my inspiration for designs comes from many sources which are irrelevant for Christmas. The repetitive tasks were soul-destroying.
But at the Holy Cross where I am now, my role is to help and encourage people to draw and paint, also to set up and tidy the art materials. I work noon to 3pm. Everyone is kind and friendly and there is a positive buzz to the place. Not only is helping out so satisfying and rewarding, it helps me to gain significantly in confidence and the thrill of feeling respected and valued as part of a team is fantastically liberating. I have made many friends and can see myself thriving there well in the future.
Suitable volunteering should be open to more autistic people as the skills required such as attention to detail, reliability or some special talents are well suited to the autistic trait and may prove to be great assets for the workplace. On their part autistic people can benefit from mixing and socialising with people of different nationalities and backgrounds and feeling respected and valued. To me the regular routines, the structure to the week and the sense of purpose in society are most satisfying.
Autistic people may encounter some difficulties. For example, travelling on public transport, especially long distances, or unintentional and misinterpreted challenging behaviour may cause problems. But with foresight, awareness about autism, guidance and the right support I see no reason why autistic people should not be accepted and be very successful doing voluntary work. I am quite sure that, giving the right conditions, volunteering can be “autism friendly”.
The fact I am high functioning autistic has presented no problems in my volunteering. One of the benefits of working there is that it has a knock-on effect on my closeness, love and affection towards members of the family. I now feel so optimistic about the future. Socialising now comes with ease. I am thrilled with life!