Category Archives: Autism

Made Possible is a month old

It’s taken less than four weeks for the book I’m editing, Made Possible, to become more than 50% crowdfunded – and this is all down to the project’s incredible and growing band of supporters.

The anthology includes the experiences of people with learning disabilities in their own words – it challenges the current narratives on learning disability which dictate that people are pitied, patronised, and not heard from directly. It presents the authentic experiences of a range of professionals who have a learning disability; these high achievers tell their own personal stories of success.

As a social affairs journalist, most of my work over the last 20 years has been influenced by the fact that I have a learning disabled sister. I know that her learning disability doesn’t define her, but society inflexibly labels her in terms of her condition, instead of recognising her personality, skills and abilities.

Attitudes must change – and that’s why we need this book, which is already halfway to being published (click here to make a pledge to help publish the book and join its community of supporters).

To hit such a milestone so soon reflects a determination of so many people to shift negative attitudes towards learning disabled people.

Made Possible also considers the wider context that undermines people’s talents and aspirations. For example, we’re in party conference season and the Conservatives are gathering in Manchester as I write. Yet most politicians (with a few rare exceptions) overlook learning disabled people – despite the fact that more than a million people with learning disabilites are entitled to vote. This is not only an equality issue – why does the political world seem to bypass people who have both a right and a desire to go to the polls? – but vote-needy politicians could do with wooing this signifcant chunk of the electorate.

Many of this book’s supporters (scroll down on this page to “Supporters”) including campaigners, activists, self-advocates and support providers – are among a strong and growing lobby working hard (all year round – not just during conference season) to change this. I’m looking forward to reflecting the vital growth in this kind of activism and awareness-raising in Made Possible.

* This post is based on an update originally published on the Unbound website

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

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!

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.

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

The disability and employment gap: interview


Around 49% of disabled people in the UK aged 16–64 are in work, compared with 81% of non-disabled people, according to government figures.

The government has said it wants to narrow this gap (the figure has remained the same for decades) but at the same time its various policies and cuts relating to disabled people undermine this aim. A recent government green paper on work, health and employment, proposes to help at least 1 million disabled people into work, but has met with a lukewarm response from campaigners.

This was the context to a recent interview with Gareth Parry, the chief executive of employment organisation Remploy, which has £50m of contracts from central and local government to help disabled people get jobs or support them back into work.

Parry, who worked his way up Remploy after starting as a trainee almost 30 years ago, has depression, something that he says gives him a more personal insight into his job running employment support organisation (“It reinforced the importance of organisations like Remploy; work gave me routine, structure, focus, when everything else in my life was in chaos”).

He is a forthright speaker about how his personal experience influences his role at the helm of an organisation aiming to support people with mental health issues; he wants more senior executives to be open about mental ill-health, for example.

The organisation, however, has its critics. While Remploy was launched by the postwar government in 1945 to give disabled second world war veterans sheltered employment, the last factories closed in 2013 in line with the idea that mainstream employment was preferable to segregated jobs. Yet many felt the closures abandoned disadvantaged people.

More recently, in April 2015, Remploy was outsourced to a joint venture between US-born international outsourcing giant Maximus – which has come under fire as the provider of the Department for Work and Pensions’ controversial “fit for work” tests – and Remploy’s employees, who have a 30% stake in the business. Critics say that being owned by Maximus undermines Remploy’s status as a champion of disabled people.

Parry rejects such suggestions: “I can understand why people would see it that way, but we have a strong social conscience, the employee ownership keeps us focused on that, the profits don’t go overseas to America, they go back into the [Remploy] business.”

Longer term, Parry believes Remploy could take on international work, like advising other countries on closing sheltered factories. He adds: “Our mission around equality in the workplace has always been and is within the confines of the UK, but if we want to make a real difference in society in the UK, the opportunity we have now is to say ‘why stop there?’” Future issues in employment support, he adds, include sustaining an ageing workforce, with help for issues like dementia in the workplace and other age-related conditions.

In terms of other changes, Parry’s words on the rise of online support (as opposed to face to face advice) reflect a general trend towards more online and digital support: “I’m not suggesting online will replace face-to-face services, but the idea of giving the power of choice to the individual as to how they access services is meaningful”.

Remploy is almost unrecognisable in terms of its remit, ownership structure and operations since its inception more than 70 years ago; as the government and local government contracts on which it once relied are dwindling, it will be interesting to see where the next few years take Remploy – and, most importantly, those it helps.

The full interview is here.

Campaigner Jonathan Andrews on the talents and skills of autistic people

Jonathan Andrews was once advised to hide his autism from prospective employers. Instead, he is making his name by doing just the opposite.

The 22-year-old recently won campaigner of the year at the European Diversity Awards 2016 and talked to me about his work for a Guardian interview.

He’s involved in a plethora of awareness-raising projects, including sitting on the first parliamentary commission on autism. He also advised the government on its green paper on work, health and employment, which is out to consultation until later this month.

The graduate, who is an academic high-flyer, starts a trainee solicitor role later this year. He believes a law career will enable him to create practical change, but says combining law with campaigning is crucial. As he explains: “There is only so far legislation can go…you need to be winning hearts and minds to get change.” For his views on work and disability, see the full interview here.

He credits his family for their supportive role in his campaigning and he speaks powerfully about how his younger brother defended him against school bullies (“It was words like ‘retard’”). Jonathan stressed that it was in fact his brother who found it harder to deal with the verbal abuse: “I developed a thick skin, people used to tease me, but I always felt there would always be people like that and it was best not to focus on them. I came out in a better state than my brother, because I could shut it out and carry on – but for people who love you, it [trying to rise above verbal abuse directed at a relative] can be harder.”

An autism diagnosis at nine was, he says, useful in understanding his needs, but some of his parents’ friends reacted with sympathy. “The instant reaction was ‘I’m so sorry’. My mum would say ‘why?’ She said ‘my son hasn’t become autistic because of this diagnosis – it lets me understand it [autism] better; he’s always been my boy and is the same person he always was’.”

What struck me about Jonathan’s work – aside from the huge amount of awareness-raising at such a young age – is that he works on a range of diversity issues; along with autism, he raises awareness of mental health issues and LGBT equality. For example, he’s launching a best practice autism toolkit with the Commonwealth disability working group in April and hosting a related Commonwealth Day event in March.

He is also involved in promoting LGBT rights as co-founder of professional network the London Bisexual Network, challenging the idea that an autistic person “is not a sexual being because you are somehow ‘other’”. He adds of his campaigning on autism as well as LGBT issues: “People often think with autism you have to be interested in one thing and this means that you are great in one area and terrible at everything else.”

He also works to educate young people about domestic violence. He explains: “When I was child and I saw something that was wrong, I wanted to correct it and when I see something that is blatant injustice I just want to do what I can to help…[with domestic violence campaigning] I know what is is like to have a stable family, family that loves you, and I want others to be able to experience that.”

In fact, his broad range of campaigning interests reflects the change in attitudes which he is trying to achieve through his work: “People often think with autism you have to be interested in one thing and this means that you are great in one area and terrible at everything else.

The full interview is here.
You can follow Jonathan on Twitter @JonnyJAndrews

In limbo: life for people with learning disabilities moving out of hospital units

Today's Guardian article
Today’s Guardian article

The government promised four years ago to move people from treatment and assessment units following BBC Panorama’s exposure of abuse at the privately run Winterbourne View.

The preventable death of 18-year-old Connor Sparrowhawk, who drowned in a Southern Health trust unit in Oxfordshire three years ago, and the subsequent Justice for LB campaign, further fuelled demands for action and accountability over the treatment of learning disabled people. In October, NHS England and council leaders set out a £45m plan to close England’s last NHS hospital for people with learning disabilities, plus up to half the 2,600 beds in the units.

But according to the latest figures, in June more than 2,500 people were still languishing in such units as the pace of change is so slow.

My piece in the Guardian today focuses on what happens to people as they are moved out of these secure hospital facilities and back “home” – “into the community”.

Some, like Ben Davis, who has autism and complex needs, are passed from pillar to post as suitable local support just doesn’t exist. Family-led research published today by charities Bringing Us Together and Respond highlights the problems for people like Ben.

Ben was admitted to an assessment and treatment unit (ATU) miles from his home after his first supported living placement broke down. After the ATU, he moved to a newly built flat nearer his family but that support has now also broken down. He has to move again, into temporary accommodation, while care commissioners organise the next option.

When I interviewed Ben’s mother, Catherine, she was both eloquent and outspoken as she described how the human rights of her son were being eroded after he was repeatedly failed by the very system designed to support him.

This is where we are today. Upwards of 2,500 people stuck in inappropriate, discredited care, and the strong will to get them out is being undermined by the lack of a clear way.

And meanwhile, many parents – every single one of whom has spent years relentlessly fighting for the right support – feel they cannot always openly challenge the authorities, such is the fragile and often hostile relationship between families and commissioners of care.

* Names and details in the article have been changed

* Read the full Guardian piece here and the check this for reports by Bringing Us Together and Respond on which the article is based

Campaign for the capital’s first sensory bus

Kay Alston's campaign for London's first sensory bus was inspired by her use of sensory books (photo: Kay Alston/Outward)
Kay Alston’s campaign for London’s first sensory bus was inspired by her use of sensory books (photo: Kay Alston/Outward)

Responding to a lack of relaxing, interactive spaces for disabled people, Londoner Kay Alston has decided to launch her own campaign for the capital’s first ever sensory bus.

The 32-year-old, who has moderate learning disabilities, is backed in her social enterprise project to create a mobile sensory room by Outward, the care and support charity that runs her supported living in Camden, north London.

Kay needs to raise £28,245 towards creating the project. A sensory room is a relaxing environment designed to focus on specific senses through special objects, and sound and visual effects. It enables people to interact with, and control the environment around them and is particularly beneficial for people with sensory impairments, complex needs and those with autism.

Kay Alston in her sensory room at home in London.
Kay Alston in her sensory room at home in London.

The idea is that people would pay a minimal fee to use the bus, with the money being reinvested into the social enterprise. The accessible vehicle would include elements like interactive carpets, star ceiling and LED Projectors.

Here, Kay explains why her project is so vital:

“Someone once said that sensory rooms have effects of taking medication without taking the medication. The room would be a stimulating place for people, and it could help to reduce anxiety and stress, and help to improve their concentration. People with disabilities should come to sensory rooms because it’s fun and fascinating.

“The sensory room on a bus will be an interactive and a calming environment. It will have an interactive floor, platform swing, bubble tubes and light projectors with music playing in the background too. The bus will be accessible to wheelchair users. It’s purpose would be to calm and stimulate people, by giving them an interactive and visually stimulating environment.

My idea was inspired by the Autism Show. I went to in 2014 where I got a sensory tactile book, and I have been to other sensory rooms and they’re lots of fun. I have been to day centres and nursing homes where people with high needs simply get parked on the side and have nothing to do. Outward was running a Dragon’s Den competition and staff who already knew of my idea encouraged me to enter. Outward invested in my idea and said they will help me set it up. Outward staff spoke to me about the online fundraising campaign, and helped put it online and I handed out over 100 leaflets to places I shop in, people I know and places where I use their services. It’s also nice to be a little famous.

I hope the bus will be a fun and interactive place for people to learn new things. People with high needs find it difficult to get out, and can’t easily go to a place like a sensory room. Everyone can do what they want and behave in a way where they won’t be judged, sometimes I walk along the street and laugh and people look at me funny and it makes me think I want more control. In a sensory bus I could have more control.

I want to run it through a social enterprise to make it bigger and better, to add new inventions and more equipment to use. The bus will drive around to different places to give more people a chance to experience and use it.

There isn’t a sensory bus in London, and there aren’t many sensory rooms in London. The sensory rooms in London aren’t properly maintained, so I have only been to sensory rooms outside of London. But some people can’t travel that far or outside of London, so a sensory bus would make it easier by going to them. People haven’t thought of a sensory room in London to be on a bus, and there isn’t a sensory room with an interactive floor.

The most difficult thing so far has been getting enough people to pledge as I don’t have many connections. But it is a unique idea because there isn’t a sensory bus in London. If we could make this happen it would be a great achievement for me and would help lots of people in London.”

New campaign for autism-friendly libraries

Brody Ginn, who features in a training video to help create a network of autism-friendly libraries (pic: Dimensions)
Brody Ginn, in a still shot from a training video shot at Chelmsford library – the video is part of a new initiative to create a network of autism-friendly libraries (pic: Dimensions)

“Please be friendly and non judgemental. Don’t be shocked if I’m noisy and unpredictable. Smile, and please be nice to my mum, going out can be stressful for us all!”

“This is the way I am and sometimes I find it difficult not to talk to myself in the library so please be patient with me. Don’t keep staring at me. Please be kind to me.”

“Sometimes I can be noisy but I don’t like noise. Please don’t shush me or ask me to leave. These things hurt my feelings and can make me noisier. Be patient. Maybe even provide a small sensory room with soundproofing so I can calm down safely without causing problems with noise in your quiet library.”

These are among the comments made by people with autism as part of research that has led to a new campaign, launched today, for a network of autism-friendly libraries.

As I explain in a piece for the Guardian, a survey of 460 people with autism and their families by social care provider Dimensions suggests that 90% of people with autism would use their library more if adjustments were made.

Responding to concerns, Dimensions and the Association of Senior Children’s and Education Librarians (ASCEL) are collaborating to develop a network of autism-friendly libraries. The aim of the initiative – which is launching at the annual seminar of the Society of Chief Librarians – is to turn England’s 3,000 or so public libraries into more welcoming venues for people who have autism.

A poster available as part of the autism-friendly libraries campaign
A poster available as part of the autism-friendly libraries campaign

The drive, backed by £7,000 from the Arts Council, includes free resources for staff such as training videos, fact sheets, posters and social stories (short, informative descriptions of situations, so people know what to expect when they visit). The work in libraries builds on the model already developed by Dimensions with cinemas,

Being judged, being stared at or told to be quiet are among the main reasons people with autism and their families avoid going to their local library. “Libraries are quiet places so my son could make a noise and I would know others weren’t judging me as a parent,” as one parent told researchers developing the campaign.

In the current funding climate, with cutbacks to services and a downturn in borrowing, it makes financial sense to cater to more people, as well as creating a wider social benefit and encouraging inclusion and equality.

Libraries should be open to all sections of our communities, or as one person with autism explained about the experience of visiting the library: “Don’t tell me to shh! Or look at me like I am a criminal”.

* For more information about autism-friendly libraries follow #autismlibraries on Twitter or check the ASCEL or Dimensions websites