Tag Archives: disability

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.

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”.

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

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

Home ownership for vulnerable people

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.

You can read more about the report here on the Voluntary Organisations Disability Group website and on the Advance website.

Drawing and democracy: painting project to boost interest in politics

Artist Rachel Gadsden's works on her new project in parliament
Artist Rachel Gadsden’s works on her new project in parliament
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.

Saint image, by Rachel Gadsden
Saint image, by Rachel Gadsden

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.

Work in progress in Westminster Hall, Houses of Parliament
Work in progress in Westminster Hall, Houses of Parliament

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.

Art workshop in parliament
Art workshop in parliament

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

Images of caring captured on camera

Example image 2

Example image 3

Example image 1

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

More autistic people should be able to volunteer

David Braunsberg
David Braunsberg
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!

* See more of David’s work on his website

Puck, peppermint and posh frocks (again)

As it’s Fragile X Awareness Day, I wanted to re-post this poem about my sister, Raana. I wrote it for Mencap’s blog and as a hearty nod to the fantastic film Mission to Lars which I also wrote about for the Guardian.

Fragile X is the most common cause of inherited learning disability in the world – but my sister’s a rare character, as you’ll read here.

My sister, Raana
My sister, Raana

The Fabulous Raana Salman

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

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

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

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

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

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

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

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

Follow the hashtag #FragileXAwarenessDay on Twitter to find out more about the syndrome, or try the Fragile X Society and Mission to Lars.

Groundbreaking gigs for artists with attitude

Punk band PKN
Punk band PKN
Shouty, sweary, noisy chaos, big stage personas, a self-proclaimed kick-ass attitude, loud drums, screeching guitars and songs about fighting and sex.

That this is a description of two punk bands currently touring the UK will hardly come as a shock. But the bands confound expectations in other ways; the gigs by Pertti Kurikan Nimipaivat (PKN), from Finland and Zombie Crash, a Brighton heavy metal band, represent the first time that two learning disabled bands will tour the country.

I’ve blogged before about PKN, the band is as likely to write lyrics arguing for respect and equality as it is to sing about avoiding trips to the pedicurist or to complain about residential care homes.

The four date tour, which began on Tuesday, is funded by the Arts Council England and organized by, Constant Flux, an arts organisation that provides opportunities to learning disabled musicians.

Richard Phoenix, who runs Constant Flux, explains: “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.

“This tour is a perfect example to present people with something that totally challenges those perceptions, nothing about the bands music or performance is going to be ‘nice’ in any way shape or form. There will be shouting and swearing, with songs about not wanting to live in residential care, demands for respect and equality, songs about fighting, songs about sex.”

Richard says that the musicians’ uncompromising attitudes musical ability will shatter the stereotypical view of what people with learning disabilities can achieve, “this in turn will hopefully help positively affect attitudes toward those with learning disabilities”.

The fact the bands are touring is a vital part of the project, adds Richard. “Touring is something which is such a huge part of what it is to be a musician and being in a band, but for so long it has been extremely difficult to achieve within the learning disabled music scene because it can be such a financial and logistical nightmare.”

Kalle, who supports PKN, sums up the band’s gung-ho attitude: “They’re feeling very excited about this. They are used to playing gigs in tight schedules but never done this tight… but they don’t think about it. They love going abroad, even though some of them don’t really know, or care, where they are globally.”

Ryan, lead guitarist and vocalist with Zombie Crash, offers this response to the tour: “Metal unleashed from the learning disabled community! It means the ultimate activity for any band to put themselves through, to go on tour, to be as active as you possibly can. The fact that we’re doing this in the month of October and Halloween is the perfect timing for us to unleash hell!”

The fact the tour has promoted as a regular event – rather than as simply a “good cause” – should help “create situations where people with learning disabilities at a gig is normalised, where it’s not unusual or exceptional”, says Richard.

On a practical level, the touring musicians have to be supported. “Making this tour viable for learning disabled artists involved ensuring that, as vulnerable adults, the musicians were supported properly,” explains Richard, “so there are 22 of us on the tour, 10 band members and various members of support, some people require one-on-one support, there are members of creative support and musical facilitation, drivers and myself managing the tour.”

Safe, reliable accommodation has been booked in advance each night, unlike in the DIY touring network where you play a gig and don’t necessarily know where you’re staying that night. “The Arts Council was so important in making this whole thing happen…we’ve been able to book everything in advance and ensure that as much risk as possible is removed, also it has taken away the dimension of the tour being a success in a financial sense and has created a situation where it can be judged on it’s artistic merits.”

One interesting byproduct of the tour planning is that it has created debate about how best to promote the gigs. Richard adds: “The main question that is asked is that if the music can stand on its own then why does the element of disability have to come into the equation? There definitely is weight behind this argument, however in discussion with several artists with learning disabilities and parents and carers of artists, the over-riding feeling is that it is more important for these artists to be strong, empowered representatives of a largely under-represented and marginalised section of society.”

• The remaining tour dates are today, October 3, at Sheffield at Heeley Sport and Social Club (with Skiplickers and Amarous Dialogues) and Friday, October 4, in Brighton at The Green Door Store (with Good Throb and The Soft Walls). Both venues are accessible with accessible toilets and prices are £3 (carers free/donation only).

• Listen to more PKN on Soundcloud