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.
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!)
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.
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.
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.
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.
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.
Step Into Dance is a partnership between grant-making organisation the Jack Petchey Foundation and the Royal Academy of Dance. The scheme runs extra-curricular classes and performance opportunities across London and Essex, enabling young dancers to develop their talent and mix with a diverse range of people.
The project reaches 200 mainstream and special needs schools a year and since its launch 10 years ago, has worked with hover 50,000 young people.
The gallery of images here show the project’s regional performance events and last year’s live festival.
“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).
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 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.
These were among the issues discussed when I recently spoke to BA and MA students at Coventry University as a visiting lecturer. I was interested in what expectations and views people preparing to enter the world of social work had of the sector, and what had motivated their choice of career.
I have spent two decades working for central government, social care providers and now, as a PhD researcher at the University of Cambridge examining what quality of life means to people with learning disabilities in residential care. An advocate for disability sport, I also recently co-founded an inclusive dance company that provides disabled and non-disabled people with the chance to learn in an inclusive environment. In addition, I am guardian to my older brother who has autism. So I started by asking the student-filled lecture theatre to indicate if they had a relative with a disability. Almost everyone raised their hand.
I was struck by the maturity, insight, and engagement of the students I met. They wanted to work in social care because they see themselves as caring. But already so early into their careers, many had met with challenges and wanted guidance and support but were not sure how to access this.
I spoke about the duty of every individual to take ownership of better practice, and not to allow poor practice to happen around them by saying nothing. A student approached me during the break. She said she had witnessed physical abuse in a care home during her placement but she was so junior she felt unable to do anything. I advised her of the regulatory authority and how to report abuse confidentially but there was wider concern among students that in a tight-knit environment where staff know each other well and there is a culture of solidarity, it would be difficult to report poor practice without being identified and singled-out. There was an echo of support for one student’s view that one can feel disempowered to make a difference when the scale of the challenge seems so vast or as she put it: ‘what difference can I make when the system is so broken’.
Hearing comments like this, I was heartened by the students’ willingness to self-reflect on how they can make a personal impact on people’s lives in spite of the wider challenges. We discussed what quality of life and identity means for people with disabilities. I shared case studies of support workers and how they had enabled people to achieve their potential by making efforts to engage on a personal, individual level and thinking about what someone can do not what they can’t.
I spoke about my work around inclusive dance through Step Change Studios, which provides disabled and non-disabled people with the chance to learn in an inclusive environment, and the feedback from disabled people on what being active and participating in society on an equal platform means to them. I was really pleased to receive feedback which showed that students understood that inclusion was not simply about taking part in an activity but goes much deeper. As one student said: ‘The description of the woman with a disability who said as a dancer she could feel like a beautiful woman was powerful and made me realise that people with disabilities often don’t ever get to see themselves in this way’.
As another student commented after the lecture: ‘I was really struck by the way Rashmi spoke about social work becoming ‘transactional’ – this is my experience of how a lot of learning disabilities services are. Relationships happen, but the emphasis that managers have is ticking boxes.’
The students also asked for advice on how to cope with challenging situations and people, I reflected on what I have learned during difficult times: identify good people who can inspire you and don’t be distracted by negative people; focus on potential not obstacles; making a small difference is better than doing nothing; and look after your wellbeing because you cannot be of value to someone else if you do not value yourself.
* Rashmi Becker’s Step Change Studios is holding a ‘Strictly’ style competition at Stratford Circus, East London, today (Monday 24th April) with care provider East Thames involving people with learning disabilities. The event is being held in advance of the UNESCO International Day of Dance next Saturday, 29 April. Contact Step Change for more information.
* A previous post on wheelchair dance can be read here.