Tag Archives: disability

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!)

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.

Growth of inclusive project to break barriers to ballet

The UK’s Flamingo Chicks also delivers inclusive dance workshops overseas, this is a session at the Multikids Academy school in Accra, Ghana (photograph: Flamingo Chicks)

 

“It is the one place she can be herself” is how one parent described the inclusive dance school I wrote about for the Guardian last year.

I’ve been following the progress of the Bristol-based Flamingo Chicks, which has just published its latest impact report and is now preparing for its spring show tomorrow, Saturday (you can read more about the background to the organisation in this original piece).

An inclusive dance session run by Flamingo Chicks (photograph: Flamingo Chicks)
The three-year-old community interest company, which has English National Ballet artistic director Tamara Rojo as a patron, brings disabled and non-disabled children together to do ballet.

Over 2000 children and young people aged 2 to 25 attended the classes and workshops in 2016-17 through workshops across the UK and regular classes in Bradford, York, Bristol, Cardiff, Leeds and London. The campaigning slogan is “ballet not barriers” and while the majority of young participants have a range of physical disabilities, learning disabilities and autism, 22% are not disabled.

The need for more more inclusive arts groups is reflected in a recent survey by charity Scope and parenting website Mumsnet. It showed that four in 10 parents of disabled children say their child rarely or never has the opportunity to play with non-disabled children.

Josie and her helper Joe at an inclusive dance session (photograph: Flamingo Chicks)

Josie Wilkins, who has a learning disability, attended mainstream dance classes with the help of her older sister, but as she got older the “gap” between her and the other pupils became wider and she had to leave. The family found Flamingo Chicks, where Josie, 10, who is also visually impaired, is a regular. She recently had major surgery but returned to class as soon as she was out of hospital, wearing, Ingrid adds “a pink tutu, and dancing in her wheelchair using just one arm!”

Recognising that preconceptions about ballet may put off boys, Flamingo Chicks launched boys only groups and introduced more male teachers and volunteers (in the last year, 38% of participants were boys). The company’s recent Dad & Me campaign also focused on the challenges fathers face when caring for a disabled child. Of 250 fathers who participated in a survey as part of the campaign, only 10% had told their boss they had a disabled child, mostly due to fear that it affect their career.

Alfie Pearson, who attends the inclusive dance sessions, with his dad and sister (photograph: Flamingo Kids)

The organisation has also delivered training and workshops overseas (I’ve blogged about this before), so its model can be emulated elsewhere. The overseas work includes collaborations with the special school in Ghana (pictured at the top of this post), a country once described as “the worst place in the world to be disabled”.

Find out more about Flamingo Chicks and its #balletnotbarriers campaign on the website, Facebook or Twitter