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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

Unique art from survivors of brain injury

Artist Nick Mayers, a member of the Submit to Love studio collective.
Artists Nick Mayers, a member of the Submit to Love studio collective.

A unique art collective in London consisting of brain injury survivors is exhibiting its “unguarded, emotive” work for the first time.

The Submit to Love Studios, supported by brain injury charity Headway East London, is a creative space in Hackney for over 50 survivors of brain injury – barely any of the artists had practiced art before their injuries. The work of around 30 of the collective’s members is featured in a new exhibition that runs until 23 February at Stratford Circus Arts Centre.

MRI, by Graham Naylor, showing as part of an exhibition by brain injury survivors (credit: Headway east London)
MRI, by Graham Naylor, showing as part of an exhibition by brain injury survivors (credit: Headway east London)
Artist Jon Barry's work, Lady in Green, in progress.
Artist Jon Barry’s work, Lady in Green, in progress.
Birds, by Laura Wood
Birds, by Laura Wood

While many of the creatives have had solo exhibitions since joining the project, this is the first time they are showing work that outlines how their experiences, including recovery, have influenced their art. The show asks visitors to consider the question “how far can one life-changing incident be seen in the artistic work you create?”.

In a related event this Saturday, the collective, which began 10 years ago, is involved in an free art workshop at London’s Southbank Centre. The event involves the artists encouraging the public to participate in on the theme of “what love means to you” with contributions acting as the basis for a collaborative piece at the Submit to Love studio. The workshop takes place in the Clore Ballroom at Royal Festival Hall on Saturday 11am – 2pm and is recommended for ages six upwards.

Freckle Face, by Chippy Aiton
Freckle Face, by Chippy Aiton
Elvis in London, by Cecil Waldron
Elvis in London, by Cecil Waldron
Creature, by Ad
Creature, by Ad

According to Headway, survivors of brain injury are often excluded from society, have lost skills, occupations and cannot communicate as they used to; art is an outlet for communication and self-expression. The charity is keen to reposition art from a simple rehabilitation activity to “both a vocation and passion project”.

Three Chicks Going to a Do, by Tony Allen
Three Chicks Going to a Do, by Tony Allen

* The exhibition, sponsored by Hyphen Law, is open 9am-6pm (Mon-Sat) and 09.30am–2pm (Sun) until Tuesday 23 February 2017 and entry is free. Venue: Stratford Circus Arts Centre, Theatre Square, London E15

A nod to National Poetry Day

Reposting this, on National Poetry Day, from something I wrote a while back, just because I watched A World Without Down’s Syndrome last night and it got me thinking about, amongst many other things, what family and diversity mean (scroll down for a summary of what I thought…). Most doctors (academic and otherwise) discuss learning disability in terms of medicine and a list of conditions, in contrast to personality and character, so:

The Fabulous Raana Salman

What does “puck off” mean, you asked,
When a playground jibe you misheard,
It’s an insult, we said, with a bittersweet laugh,
And “puck” is quite a rude word.

You’re older now, and more in the know,
And you’re still just brilliantly funny,
We love how you call my other half “bro”,
And our mother is always called “mummies!”

You constantly amaze us with all that you do,
You garden, you cook and you bake,
You’re a music fan who likes her tunes loud,
Full volume – bloody early – at dawn break.

You love Chinese food and movie nights in,
And sometimes the pub if it’s near,
Remember your fury when we ordered you juice,
And you indignantly cried: “I want beer!”

“You’re fried!” you shout, knowingly wrong,
After watching The Apprentice on telly,
You say it when angry or to make us smile,
And it shows you’ve fire in your belly.

You’re creative and busy and do stuff we can’t,
You’ve woven and painted and grown,
I love having you stay so you’re able to see
How your art brightens up my home.

You’re thoughtful with gifts, matching present to person,
(You know I like peppermint tea)
We joke how “mummies” foots the bill sometimes,
And you say of your gifts: “They’re for free!”

You love baggy sweatshirts, they comfort and cloak,
You categorically refuse a posh frock,
You know your own mind, you’re fabulous and kind,
And basically Raans, you rock.

————————————————————————————————————-

And, some (very) brief thoughts on Sally Phillips’ documentary here:

European Diversity Awards

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Really pleased to be on the shortlist for this year’s European Diversity Awards in the journalism category.

Previous winners in the awards, which cover a range of areas and were launched in 2010, include TV presenter Ade Adepitan, trans-activist April Ashley MBE, Baroness Doreen Lawrence OBE, Lord Cashman of Limehouse, and a range of organisations that support and promote equality and diversity.

The shortlisting is based on work that “recognises achievement in all areas of diversity: race, age, sexual orientation, disability, gender identity and belief”, according to the organisers.

Winners will be announced at the end of November.
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Street theatre focuses on social isolation

Two characters in a scene from pop-up street show The Loneliness Street Cabaret.
Two characters in a scene from pop-up street show The Loneliness Street Cabaret.

Are you too busy with tech to talk? How well do you know your older neighbours? Do you think your local community involves everyone in it?

A pop-up street theatre performance this week will focus on the epidemic of loneliness and the growing isolation of older people, as I explain on the Guardian website today.

A young audience member gets involved in a recent performance of the Loneliness Street Cabaret.
A young audience member gets involved in a recent performance of the Loneliness Street Cabaret.

The Loneliness Street Cabaret, an outdoor street performance from the Beautiful Mess Theatre Company, is showing from Tuesday to Thursday (4 to 7 October) as part of the month-long Age UK Lambeth’s Celebrating Age Festival in London.

The theatre performance, which takes place in different public spaces across the south London borough, is inspired by the fact that loneliness is increasing at a time when our our cities are becoming ever more crowded. The show has been developed using anecdotes, opinions and experiences of older people in south London.

A character is chastised in the Loneliness Street Cabaret for being too distracted by his phone to interact with people.
A character is chastised in the Loneliness Street Cabaret for being too distracted by his phone to interact with people.

The shows are performed in public spaces, from outside tube stations to public squares, in the hope that the shared experience of performance will spark the audience to have conversations and take action based on the show’s themes. Osborne says the aim is to provoke people to consider the issues highlighted by the performance: “It’s about your local community and how you fit within it,” says creative producer Chloe Osborne, “but also about what your responsibility is for ensuring that others belong in it too.”

You can read the entire piece here.

* All photos from the Beautiful Mess Theatre Company

Designing for dementia

This year, 225,000 people will develop dementia – that’s one person every three minutes – and 70 per cent of people in care homes have dementia or severe memory problems.

There are 850,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2025. This will soar to 2 million by 2051, according to the Alzheimer’s Society.

Despite the prevalence of the issue, a recent report raised serious questions over how prepared we are for the needs of the ageing population. And other research suggests dementia patients are subject to a care postcode lottery ; a further study published yesterday (World Alzheimer’s Day) showed there is no reduction in the use of antipsychotic drugs in dementia care, despite government guidance.

Encouraging dementia-friendly design is an important part of the debate and some of the innovative developments in this area are a welcome contrast to the lack of progress elsewhere.

Care and support charity the Abbeyfield Society has unveiled a £9m new development, Abbeyfield Winnersh, in Berkshire. Early images give one an idea of how design can be used to support people with dementia. Granted, the images look a bit eerie on account of the noticeably absent people, but they at least offer a glimpse of what the new developments in dementia design can offer.

abbeyfield-households-with-their-dementia-friendly-window-memory-spaces
Each of the 60 residents in Abbeyfield Winnersh will have their own ‘window’ next to their front door (pictured above) – effectively a memory box with instantly recognisable, personal items to help them identify their own door.

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All bedrooms – all leading onto an outdoor space – are arranged in six, circular clusters of 10 ‘households’ aiming to offer a more homely, community feel.

castleoak-winnersh-56
The furniture and furnishings have been chosen to reduce anxiety with, says Abbeyfield “calming colours and textures chosen to stimulate the senses and promote reminiscent memories”.

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Facilities for family and friends include a playground for young children, above.

Involving the friends and relatives of care home residents in the life of a care home is a crucial and not often acknowledged issue in dementia support. As a previous post on this blog by Kate Murray stresses, the importance of helping children understand and be aware of dementia cannot be underestimated.

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.”

Arts festival offers a focus on equal opportunities for disabled young musicians

Performers from integrated circus company Extraordinary Bodies will be at the Fast Forward Festival next week. The event will highlight arts accessibility and, hope campaigners, boost calls for a new centre for training for disabled young musicians.
Integrated circus company Extraordinary Bodies performs at the Fast Forward Festival next week. The event will highlight arts accessibility (pic credit: Rachel Lambert).

Across the country, there are a dozen government-funded centres for advanced training, providing specialist education for young musicians. But there is no such equivalent for their young disabled counterparts.

However, it is hoped that an arts festival, which opens next Friday, will strengthen a campaign for the first ever such facility for musicians with special education needs and disabilities.

Next week, Colston Hall in Bristol will be home to the second Fast Forward Festival, which champions accessible music making and arts. Performances include those from the Paraorchestra, the world’s first professional ensemble of disabled musicians, founded by conductor Charles Hazlewood in 2012. Integrated circus company Extraordinary Bodies is another headliner.

Extraordinary Bodies performance of Weighting Photo credit: Richard Davenport
Extraordinary Bodies performance of Weighting Photo credit: Richard Davenport

The return of the festival, which was launched last year, reflects the venue’s aim to champion arts accessibility and to contribute to a shift in perceptions of disability. As part of next week’s event, Colston Hall, run by Bristol Music Trust, is holding an exhibition involving the One Handed Musical Instrument Trust (the trust’s aim is to remove the barriers to music-making faced by disabled people).

Ruth Gould, artistic director of Liverpool based disability arts organisation DaDaFest, summed up the situation when I interviewed her recently, highlighting how negative assumptions about disability linger on in popular culture (“Lack of training, lack of educational opportunities, lack of work, lack of media and arts representation, demise of independent support, cuts in mobility allowance and personal assistance”.)

Colston Hall, run by independent charity Bristol Music Trust, wants to be home to the UK’s first centre for advanced training for disabled young musicians, both to encourage more opportunities for them to get qualifications and pursue a career in music, or just to be able to enjoy music. The aim of the campaign for a new centre, launched at the House of Commons earlier this year, is for the centre to train 2,500 young people from across England, and set a national benchmark for music accessibility.

Musicians at Colston Hall, Bristol
Musicians at Colston Hall, Bristol

The centre would form part of a £45m revamp of Colston Hall – Bristol council, the government and Arts Council have committed a total £25m so far – with new classrooms, state-of-the-art technology lab. The technology would include cutting edge instruments, such as those played by the flicker of an eye, or software that uses facial movements to control music.

Bristol Music Trust currently trains young disabled and special needs musicians, but the redevelopment would add new classrooms and a state-of-the-art technology lab will set new national accessibility standards. The venue, currently not accessible to disabled people, is due to close next summer for redevelopment; the plan is for it to reopen in 2019, fully accessible and home to the UK’s first specialist centre for the training of young disabled musicians.

Young pianist Ashleigh Turley at the launch of a campaign to create a new training centre for talented young musicians with disabilities
Young pianist Ashleigh Turley at the launch of a campaign to create a new training centre for talented young musicians with disabilities

The area is already home to the South-West Open Youth Orchestra which is the UK’s only disabled-led regional youth orchestra. The Paraorchestra also recently relocated to Bristol. The addition of a centre for advanced training at Colson Hall, supporters hope, would turn the region into a beacon for accessibility and equal opportunity.

* On the same topic of accessible arts, integration and young people, I recently came across an innovative music project that aims to raise awareness about visual impairment and sight loss. Musician Marie Naffah, a 23-year-old singer/songwriter, was inspired to explore blindness after her grandmother developed age-related macular degeneration. Marie wrote, recorded and performed a song while blindfolded and then collaborated with a group of six blind and visually impaired musicians to record the track, ‘Blindfold‘. Disability is not an obstacle to creativity or talent, as Marie says in a TEDx Talk at the Courtauld Institute that went live this week.