Category Archives: Disability

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!)

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.

Pioneering performers: festival season for inclusive dance studio

Adrienne Armorer at a Step Change Studios session (photo: Step Change Studios)

Step Change Studios is the first dedicated pan-disability inclusive Latin and Ballroom dance class in London.

On Saturday, the Westminster-based school kicks off one of many summer season showcases at the Liberty festival at the Olympic Park .

Forthcoming summer appearances include performances and workshops at the Together Fest at the Arts Depot in North London on July 22. The school will also put on an inclusive dance demo at the Disability Sports Coach Summer Festival in West London on July 28.

The pioneering project’s last class before the summer break is on Saturday, and founder Rashmi Becker stresses there are no restrictions on ability, in terms of who can join in.

Step Change, which is based at the Abbey Centre and launched earlier this, is open to all. As Rashmi, a disability advocate as well as a dance specialist, explains: “We have people with learning disabilities, autism, wheelchair users with different physical and neurological conditions such as MS and cerebral palsy, people with visual impairments, young and older people…There are simple things I do to enable people to join in – for example I meet people with visual impairments at the station and support them to the dance space”.

Adrienne Armorer, for example, gave up her beloved salsa 10 years ago after developing the physically debilitating condition multiple sclerosis (MS). But she has taken up dancing again through Step Change, after hearing about the project through her local MS society.

Here’s how Adrienne, who details her experience in full on this blog, described her first Step Change class: “Wow – a 50:50 mix of wheelchair dancers and those without. Cool! A little warm-up and then we were off. I’m not a regular wheelchair user and get fatigued quite easily, so I was worried I wouldn’t be able to keep up. It was fine. Nuno and Rashmi [the instructors] are on hand to help and answer any questions. I also needed to ask one of the other wheelchair dancers how he was managing to turn his chair using just one hand. The hour flew by. What a great afternoon. We left on a high.”

For more information contact Step Change Studios Founder Rashmi Becker on 07976 363861, or email contact@stepchangestudios.com

Election: voting support for people with learning disabilities

Campaigner and self-advocate Gary Bourlet on politicians

The Conservatives’ manifesto pledges on social care have been both controversial and muddled, but at least the issue of support (and how we pay for it) is finally a subject for mainstream national debate. Campaigners have long argued that plans to fix the broken social care system must be high on the political agenda, but many of the people who rely on it most are rarely wooed by politicians – as the above quote from Gary Bourlet makes clear.

And while more than a million people with a learning disability are entitled to vote on June 8, according to social care provider Dimensions, only around 10% of people with learning disabilities vote. This is generally, as campaigner Gary Bourlet once told me about politicians, because “they don’t make it accessible to us … they talk in jargon.”

The links below offer accessible resources and general voting guides to support people to vote and find out more about election issues (I’ll update this roundup as – hopefully – more is added).

The manifestos (to be updated):
Liberal Democrats – easy read version available pdf

Labour – accessible formats here.

Conservatives – easy read and accessible formats manifestos here.

The Green Party – “All manifestos and alternative formats” here, including easy read, braille and audio.

There is no mention of how to get an accessible version of the UKIP manifesto.

Campaign for accessible manifestos from Mencap: “We want people with a learning disability to feel part of this election. But we need your help.”

Guides to voting:
Easy read guide to voting in the general election published by the Electoral Commission and Mencap – pdf: “People with a learning disability have as much right to vote as anyone else. Don’t let anyone else tell you different.” (See also this pdf from the Electoral Commission on disabled people’s voting rights).

Easy read guide to voting from Inclusion North: “The guide has lots of links to lots of information about how to vote.”

Love Your Vote is “a campaign run by Dimensions to support people with learning disabilities and autism to understand and exercise their right to vote.”

Every Vote Counts from United Response is “aimed specifically at making the process easier to understand for people with learning disabilities and those that support them”.

Video guide to voting from Brandon Trust is a video guide that “explains how things work in the UK, what you need to do to register to vote, and the different ways you can vote”.

Link to a short film made by BTM’s learning disability group “encouraging everyone to register to vote by May 22”

Easy read summary of social care issues that all parties should consider, from VODG: “Our General Election statement sets out the issues VODG wants all political parties to consider during the General Election 2017 campaign.”

Event at 10.30am Sat 3 June University of East Anglia: “Learning Disability nursing students at the School of Health Sciences have organised an information day for people with learning disabilities so that they can find out more about voting in the upcoming general election…The political parties will be represented at this drop-in session and will provide accessible information and discuss their policies with people with learning disabilities.” Also see the related Facebook group.

RNIB on voting and elections for the visually impaired: “All voters have a right to vote independently and in secret, and local authorities have to ensure that polling stations are accessible to people with sight loss.”

Scope’s guide to accessible voting: “Accessible voting..Make sure your voice is heard this June.”

An “unbiased, easy read guide to party manifestos” from United Response

On social media:
You can also follow the hashtags #LoveYourVote #EveryVoteCounts #LDvote #EasyReadElection #LDVote2017 on Twitter.

* This post was updated on Mon 22 May with information on the University of East Anglia event, Green Party manifesto and Conservative Party manifesto, on Fri 26 May with RNIB info and Scope’s voting guide and on Fri 2 June with the United Response resource.

Related video: Kathy Mohan angrily asks what Theresa May intends to do to help people with mental health problems and learning disabilities.

Why we need to save sheltered housing from more cuts

“A certain amount of support has gone, so this has made people themselves more involved with each other – we get together more.”

I spoke to older people like Val, Rene and Jane, who live in sheltered housing on the south coast, for a piece in the Guardian this morning; the comment above reflects how the kind of housing they live in has changed radically in recent decades.

Rene spoke to me about the shock felt by residents as support services are cut, their criticism of government and the need to rally round and adapt (with peer-to-peer support, for example) as help is scaled back.

Over 20 years ago, for example, the Worthing Homes sheltered complex I visited had housing staff onsite who ran activities. Now, thanks to years of government cutbacks to sheltered housing support, there are three frontline staff rotating across up to 2,000 homes in the region, depending on need, and drop-in sessions run by external experts.

General sheltered housing, like that run by Worthing Homes, offers low-level support and self-contained accommodation for low income people aged 55 or older. Benefits include greater independence and less reliance on health and social care.

But this kind of housing has suffered thanks to historic and widespread cuts to the supporting people fund (the national programme for housing related support available to councils). Now, it is at further risk. The government was forced last year to defer its unpopular decision to impose a cap on housing benefit to supported housing; the proposal was included in a recent government consultation and is due to covered in a forthcoming green paper. Campaigners including the National Housing Federation (NHF) have been challenging the funding plans, with Age UK warning of “uncertainty about the future of sheltered housing in the social rented sector”.

Residents’ concerns over the loss of on site staff in sheltered housing are well documented, but years of central and local government cuts mean that it is now the norm for on-site staff to be axed in favour of telecare and floating support (short-term help with specific problems like benefits). There are no precise figures, but a 2012 review by Joseph Rowntree Foundation noted that as far back as 2009, local authorities estimated that by 2011, 38% of sheltered housing would have floating support, not on-site provision.

The approach in the Worthing region, an area known for its high proportion of older people, underlines the value of sheltered housing as the population ages, and mirrors similar moves across the country.

Communal garden, Pearson’s Court sheltered housing scheme in Worthing, West Sussex.

Simon Anderson, Worthing Homes head of customer services, says the landlord and residents have tried to work together since the council funding cut: “We were asked to do much more work for less money…but ultimately this is a housing provider and its residents coming together [through agreeing new initiatives] at a time of austerity”.

A 2012 Age UK report, Making it Work for Us [pdf] suggests “listening and responding to the views of residents should be fundamental in shaping what sheltered and retirement housing offers”. Simon explains: “Some people who moved in when there was someone [staff] here all the time…Now they’ll be thinking ‘I didn’t sign up for this’…So in conjunction with them, we began discussions on what the future service would look like. Social isolation was a significant issue for many”.

With the green paper on such issues due after the election, and further funding changes looming, Simon acknowledges “the lack of clarity and certainty”, yet he is resolute: “We have no plans to withdraw our sheltered schemes as they bring significant benefits to our residents as well as savings to the public purse by maintaining our residents’ health, tenancies and independence.”

You can read the full piece here.