Fresh perspectives on social care: a new exhibition

What does someone who is supported by social care look like?

Transforming stereotypical perceptions of social care is the aim of a new photography exhibition showing in London this month – some of the featured images are shown below.

SELF Season 2 is a collaboration between photographer Dean Belcher and social care provider Certitude.

Everyone featured in the exhibition is either connected with Certitude or with activities offered by Age UK Hounslow, west London. The project’s ambition is to use imagery “to depict the commonalities between people within social care rather than reinforcing the often-imposed barriers and roles that people are given”.

The new show follows the success of an exhibition (SELF: Portraits in Social Care) held in Brixton earlier this year.

* SELF: Portraits in Social Care is running until Thursday 28th September at Montague Hall, 30 Montague Rd, Hounslow TW3 1LD, Monday to Friday 3pm – 5pm. For further details, contact jmeyer@certitude.org.uk

Challenging perceptions about learning disability: a personal piece

My sister Raana (left) and me (photo: Rob Gould)
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When I tell people that my youngest sister has the learning disability fragile x syndrome, there are usually two common responses. People either ask what fragile x is, or they want to know kind of support she needs.

Not many people ask my sister’s name (Raana) or how old she is (28). They do not ask about her skills (baking, ceramics), what she likes doing in her free time (zumba, movie nights), or her achievements (so many to choose from – her artwork, her college course, her public speaking, how she looks after her nephews and niece).

In a piece today for Learning Disability Today, I explain how the focus on my sister’s disability, rather than her ability, is a symptom of wider negative public perceptions about learning disability. Such perceptions mean that people with learning disabilities are regarded as devoid of personality, passive recipients of care or deserving of pity.

Overturning these attitudes and challenging stereotypes about people like my sister is the aim of the new book I have just launched, Made Possible. Made Possible is a crowdfunded collection of essays by high-achieving people with learning disabilities. The book, with the award-winning publisher Unbound, features the experiences of talented professionals in different areas like film, theatre, music, art and campaigning.

To read more, see the blog in Learning Disability Today.
To help the crowdfunding effort, see Made Possible on the Unbound website, follow #MadePossible on social media and @Saba_Salman on Twitter

Made Possible: diverse individuals united by a common cause

Just 11 days since launch and Made Possible is already more than 40% crowdfunded – that’s down to 100 brilliantly supportive people so far helping to create this groundbreaking book by pledging and pre-ordering it.

I’m working with award-winning publisher Unbound on Made Possible, a collection of essays by successful people with learning disabilities. It’s incredible that it’s almost half way to being published and has hit the 100 supporter landmark, something that is entirely down to a group of diverse individuals united by a common cause.

People with learning disabilities are pitied or patronsised, but this new book challenges the current narratives. It presents the authentic experiences of a range of professionals who have a learning disability and, for the first time, they tell their own personal success stories in their own words.

You can read more about the book here and check the latest updates here.

Follow me on Twitter @Saba_Salman and #MadePossible to keep up to date with progress.

You can also check out the #UnboundAnthology thread this week (and if you’ve already made a pledge to help create this unique book, then thank you!)

Attitudes must change: launching Made Possible

This update was originally posted on Unbound on Sunday 10 Sept:

First off, a HUGE thank you to all you brilliant early bird pledgers for getting Made Possible off the ground – I’ve been blown away by your support, feedback, encouragement and enthusiasm.

Your help in creating this book means that Made Possible reached a major crowdfunding milestone after just 2 days – the 25% mark. Sensational – we’ve not even been going for a week and we’re a quarter funded!

Thanks too to those of you who’ve fearlessly embraced the unfamiliar waters of crowdfunding; this is all new to me too, so we’re in it together.

Some of you have asked why this method to create Made Possible. Good question. Unbound felt right, not least because it’s an award-winning publishing company, but because it connects readers directly with the books they want to see written. In a nutshell, you support the book you want to read – without your pledge, the book can’t get published. And Unbound breaks the traditional boundary between reader and writer – an approach that overturns the status quo seemed like absolutely the right fit for a book that aims to do the same thing.

So here we all are, this is now our Made Possible community! Thank you for being a part of it – it’s going to grow, and as it does, we get closer to the aim of challenging some very outdated mindsets about learning disability.

If you’ve pledged, please do share the news about what you’re helping to create, and encourage others to help make this happen. You can use #MadePossible on social media and see who else is talking about what we’re trying to do.

Thanks everyone, and more soon,
Saba

Made Possible: challenging attitudes to learning disability

So pleased to launch this today with crowdfunding publishers Unbound – a book challenging perceptions of learning disability .

Have you ever heard a person with a learning disability talk about their talent, or share the secret of their success?

No. That’s why Made Possible needs to be published. It’s a collection of essays on success by people with a learning disability.

There are 1.5m people with learning disabilities in the UK today – my sister among them. But our society – media, politicians and the public – barely gives them lip service. If ever learning disabled people do get a mention, they are usually talked about as scroungers who are a burden on the state, or superhumans who have triumphed over adversity.

People with learning disabilities are pitied or patronised, but rarely heard from in their own words.

This new book challenges the current narratives.

This book needs your support to get published – find out how to help here, and please share widely.

Thank you!

How to get more learning disabled people into paid work

When I recently met Anthony Knight, an arboretum horticulturalist at Kew Gardens, his enthusiasm for work was infectious. Anthony’s knowledge about plants and trees is impressive – as is the determination with which he’s pursued his passion for gardening.

It took him nine attempts over five years before finally landing the job in November, despite having done work experience and an apprenticeship at the world-renowned botanical gardens in south-west London.

While in theory Knight, 38, was a strong contender for the job – having previously worked at Kew, at a local nursery and in garden maintenance – he has a moderate learning disability that affects how he communicates, so job interviews were a barrier. “I was not able to portray myself in the best possible light,” he says.

Knight was only successful once Kew adjusted the application process, giving him more information about the general subjects to be covered so he could better prepare for the interview. He also had support from learning disability charity Mencap.

As someone who has a learning disability and is in paid employment, Knight is rare. In the UK, just 5.8% of people with a learning disability who are known to social care services are in paid work, compared with 74% of non-disabled people. But the most up-to-date figures from a 2009 government report show that 65% of learning disabled people want paid work but have been unable to get a job.

There’s also a growing call for more people with learning disabilities to have a paid role at and a stronger influence on the kind of organisations that support them.

For more, read the full piece here.

Prejudice and inadequate support: the situation for minority ethnic children with learning disabilities

Callum and Parmi Dheensa (photo: Parmi Dheensa)

When Parmi Dheensa’s son Callum kissed a classmate on the cheek not long after starting at a special needs primary school, a teacher asked his mother if this was “culturally appropriate”. Dheensa said that as long as the classmate was happy, nothing in her son’s Punjabi heritage forbade such displays of affection.

It is just one example over many years of professionals leaping to incorrect conclusions based on the ethnicity of her severely learning disabled son, who is now 19, says Dheensa. They also assume she does not work and is supported by an extended family when in fact she is a lone parent who works full-time. Dheensa, 43, was once told that her son’s support – he lives at home and is at a special school – was “better than it would be in India”. Fair point maybe, she says, but irrelevant to a British-born, Midlands-based family.

My Guardian article focuses on Parmi’s charity, Include Me Too, which works with 1,500 families a year. It has launched a campaign for the government to review its equality duties in relation to special needs education and support for BAME communities.

The charity has now launched a campaign asking the government to review BAME representation in government decision-making (existing involvement is, says Dheensa, “tokenistic”) and a new disability and equality strategy to ensure families get better support. The criticism is that professionals do not fully involve parents in reviews of the support they require, or in drawing up education, health and care plans, and parents or carer forums are predominately white British.

Read the article on the Guardian website.

Murals with a message need a new home

The access for all mural, east London (photo: Vision)
Para athletes mural, east London (photo: Vision)
Para athletes mural, east London (photo: Vision)

The public is being asked to suggest permanent homes for a trio of murals created to highlight disability issues.

A group of disabled artists, the Vision collective, created the collaborative art boards which have been displayed for a limited time on the Shoreditch Art Wall, east London, to mark the recent World Para Athletics Championships. The collective’s mission is “to inspire artists with disabilities to have an integral voice in their community through their artwork”.

Murals with a message on display in east London (photo: Vision)

A fourth mural, created with children supported by the Action for Children charity, is earmarked for use by the charity.

The murals are up until this Sunday, and the artists are inviting ideas for their relocation. The Vision group’s facilitator, Sarah Hughes, says: “We feel they are suitable for play areas, shared community space, special schools, hospitals, the Olympic Park- there are lots of possibilities.”

The Vision artists include Michelle Baharier, Dawn Barber, Dwain Bryan, Julie Cordell, David Elton, Lynda Evans, Lorraine Peacock and Sandra Pink.

For more information see the website or to suggest a location, contact sarah@murals4mankind.org

Breaking barriers: new event in UK festival calendar

2Decks, who will be on stage at the Rock House Festival (photo by Paul Mansfield)
A new festival opens this weekend, featuring some of the biggest names in the integrated music scene, uniting learning disabled and non-learning disabled musicians.

The Rock House Festival in Brighton, promoted by learning disability-led arts charity Carousel, is expected to attract a crowd of 150-200 people.

The line-up includes Zombie Crash – the groundbreaking metal band that I’ve written about in the past (I was impressed back then by their “shouty, sweary, noisy chaos, big stage personas, a self-proclaimed kick-ass attitude, loud drums, screeching guitars and songs about fighting and sex”…who wouldn’t be?).

Zombie Crash, who will perform at Saturday’s Rock House Festival (photo by Paul Mansfield)

Other names at the new festival, which takes place at music venue The Green Door Store, include 2Decks, The Daniel Wakeford Experience,(who some might recognise from the Channel 4 show The Undateables). Fellow performers include prince vaseline and Sauna Youth. The festival’s wide ranging musical genres include rock, punk, blues, soul, jazz and rock/rap crossover.

Daniel Wakeford, performing at Saturday’s Rock House Festival (photo: Carousel Arts)
The band prince vaseline (photo Carousel Arts)

The inaugural event has been sparked by the successful monthly Rock House nights at music venue The Green Door Store.

For the last eight years, the accessible Rock House nights have attracted crowds of up to 100 and feature one non-learning disabled band, alongside up to five learning disabled bands.

Musician Tom Cook and promoter Richard Phoenix, who runs community interest company Constant Flux, launched the monthly band nights eight years as a showcase for the learning disabled musicians they worked with.

It’s hoped the new festival will become an annual fixture in the UK summer festival scene.

* Festival venue The Green Door Store has wheelchair access and wheelchair accessible toilets. For ticket information, see the festival website.

MS treatments: life-changing, but hard to access

More than 100,000 people in the UK have multiple sclerosis (MS), the most common cause of serious physical disability in working age adults, according to the MS guidelines set out by the National Institute for Health and Care Excellence.

My write up in the Guardian today looks at the condition, which is regarded as relatively rare. Public awareness of MS is low, but recent innovations in treating and assessing MS are creating a fresh focus on the disease.

Research suggests, for example, that MRI scans – already used in diagnosis – may be useful in predicting how MS will progress. In addition, a new drug therapy just approved in the US offers help for symptoms in the most chronic form of the condition. But, given that the drug has yet to be licensed in Europe, can the UK keep up with the latest innovations in the treatment of MS?

This was the backdrop to a recent roundtable discussion, supported by biotech company Sanofi Genzyme. Are the tools for assessing MS fit for purpose? How can early diagnosis and treatment be sped up? What matters to patients?

You can read the views of MS specialists, health experts, campaigners and people with MS on these issues in the full piece here.

Saba Salman on social affairs