Season’s greetings from The Social Issue – to mark the jollities, here’s a snapshot of some of the upbeat posts and pictures about people, projects and places featured over the last 12 months. This festive pick is by no means the best of the bunch – the inspiring stories below are included as they’re accompanied by some interestin and images and almost fit with a festive carol, if you allow for a little the poetic and numerical licence…
Very huge thanks to the Social Issue’s small band of regular and guest bloggers, all contributors, supporters, readers and everyone who’s got in touch with story ideas and feedback. See you in January.
On the first day of Christmas, the blogosphere brought to me:
A tiger in an art show Batik Tiger created by a student at specialist autism college, Beechwood
Two JCBs The Miller Road project, Banbury, where agencies are tackling youth housing and training. Pic: John Alexander
Three fab grans Hermi, 85: “I don’t really feel like an older woman.”
Four working teens From antisocial behaviour to force for social good; Buzz Bikes, Wales.
Five(ish) eco tips Eco hero Phil uses a “smart plug” to monitor domestic energy use
Last Christmas was the first time in 14 years that Alex (not his real name) had spent the season with his family. It was the first time his parents had come to his house for Christmas dinner, the first time the 46-year-old had shopped for the meal, prepared it, laid the table and chosen the wine.
The event would have been inconceivable just a year before when, Alex, who has a severe learning disability, was living in a care home in Kent. He had already spent many years in a long-stay hospital ward. His challenging behaviour ranged from kicking to spitting and usually resulted in him being restrained by four members of staff, one pinning down each of his limbs, for up to 45 minutes.
Alex’s story, which outlines his path to appropriate social care, is among the powerful testimonies published in a report today by the Voluntary Organisations Disability Group (VODG). I was involved in producing the report for the VODG, which brings together more than 50 voluntary sector disability organisations, and I also manage the group’s blog.
Gavin Harding, who co-chairs the National Forum for People with Learning Disabilities and chairs self-help advocacy group Voices for People, writes in the foreword to the publication: “There is another way, which is presented in this report. It’s about putting people with learning disabilities and their families at the centre of planning and delivery of care.” Harding adds: “Care is about people, it’s not just a process.”
The VODG report outlines the key elements that can contribute to high quality, cost-effective care.
You can read more about the report via this blogpost.
Chances are you’ve never heard of the world’s most common inherited learning disability – it was news to me until my sister was diagnosed with it several years ago.
Today is Fragile X Awareness Day in 16 European countries including the UK. The syndrome affects least one in 4,000 girls or women and one in 6,000 boys or men, as my family discovered in 2003 when my sister was diagnosed at 14.
Late diagnosis of Fragile X, as in my sister’s case, is sadly all too common – but it’s still better than the condition remaining undiagnosed (again, common due to it being misdiagnosed as autism or misunderstood by many professionals).
Recognised just 30 years ago, it is diagnosed by a blood test revealing the abnormal “fragile” site on the X chromosome. Symptoms include social, language and emotional problems, mild to severe learning disabilities, and autism-like behaviour.
Professor Jeremy Turk, who advises the support charity the Fragile X Society on the psychiatric and psychological aspects of the syndrome, is calling for people diagnosed as autistic who also show signs of developmental delay to be tested for Fragile X. “The relatively low levels of diagnosis of Fragile X Syndrome is a matter of extreme concern as it prevents families from receiving the correct support, understanding their condition and restricts their ability to make informed decisions about their lives,” says Turk. “A lack of awareness of Fragile X Syndrome amongst health professionals, and society in general, contributes to this low level of diagnosis and the failure to understand the links with, and important differences from, autism.”
As with any complex need, the symptoms of Fragile X vary hugely, making a single template of care impossible (even if the current drive towards person-centred care would allow it) and “the system” a minefield for parents and families. With children, as we found in my sister’s case, the multi-agency support can include the health visitor, GP, paediatrician, school special educational needs coordinator, social worker, care manager, speech and language therapist, occupational therapist and physiotherapist. That’s if you’re lucky, have the time, energy and the wherewithal to negotiate the system.
And, as is par for the course in social care, just when you think you’ve secured the right tailor-made support, it’s dismantled and you have to start all over again once your child moves from children’s to adult services. All too often the “transition” – a catch-all term that makes it sound like an elegant, seamless move, oh the irony – to adult care is as relentlessly bumpy as that first roller coaster of diagnosis and the initial securing of provision.
I explained my family’s experience in a Guardian piece several years ago, from the furtive glances from strangers at her “inappropriate” behaviour to the fact that family excursions would involve packing a few small towels, just in case Raana got so stressed that she vomited. Since then have described my sister’s Raana’s path to the right care and support on this blog. We have been fortunate; our experience has always been more of a series of battles than full-blown crises, but I know others are not so lucky.
In 2006 Alison Davies jumped from the Humber Bridge with her 12-year-old son, Ryan, who had fragile X. She had complained that Ryan was not receiving his entitlement of respite care, although this was investigated and found not to be the case. The contrast between the chink of optimism my family and I had just started seeing in my sister’s case, with her tentative moves towards independence and finding her own voice, and the total, utter despair and isolation that Alison Davies must have felt was horribly stark.
After that incident on the Humber Bridge, Labour MP Betty Williams went on to table an early day motion in Parliament, criticising the insufficient support for families of children with Fragile X and autistic spectrum disorders that pushes many to “crisis point”. Just recently I read an extremely moving piece by a mother who admitted that “as a parent you feel guilty, and then you feel alone”.
Half a dozen years after Williams tabled her motion, I wonder how much has really changed for families affected by Fragile X, while remaining hopeful about the impact of today’s awareness day.
* read about Fragile X on twitter using the hashtag #fragilexday
Tom Hodson at the Ancient Technology Centre, Dorset. He has just won a BTCV Green Hero award. Credit: Professional ImagesTom Hodson used to live on the streets, his was a peripatetic lifestyle that did little to help him overcome his depression and manic episodes. Diagnosed bipolar, even when he got a roof over his head, he often went for a week without proper sleep.
Today he is honoured as a Green Hero in an annual awards scheme, having made a difference to the local environment through volunteering and transforming his life in the process. The 21-year-old from Salisbury has has won in the natual health category in the awards run by practical conservation charity British Trust for Conservation Volunteers (BTCV), recognising how he’s changed his own life and inspired others. The Green Hero awards show the positive impact of those who give their time for community-based conservation projects.
Environmental charity BTCV volunteer Tom Hodson a "green hero". Credit: Professional Images
Tom’s hands-on, practical work with the charity has had, he says, huge benefits on his sleep issues. Without his role, he adds “I’d be doing nothing..going nowhere with my life.”
The scheme has given him “direction and purpose” and has boosted his mental health. As well as becoming more confident, he has learned time keeping, healthy eating and how to use a computer. He leads groups of volunteers and is looking forward to coming off benefits and into paid work.
Environmental award-winner Tom Hodson at the Ancient Technology Centre, Dorset. Credit: Professional Images
Tom’s fellow Green Heroes include Michael Rogerson, 20, who won the volunteer of the year award. Michael, who has been deaf since birth, joined BTCV after 15 months without work, he was depressed and had very low self esteem. He has now got his dream job as a gardener and is learning to speak after having a cochlear implant and one day hopes to set up a dry stone walling business.
And the benefit of supporting and including a diverse volunteer workforce is not simply on the inviduvual themselves; having such a diverse team of volunteers improves social inclusion and breaks stigmas.
There are of course specific schemes that offer people with disabilities or those with mental health problems the opportunity to donate their time to the community with support. Schemes like the Respect Us project, run by charity Community Service Volunteers (CSV) that help young learning disabled people to volunteer as they move from school to becoming a young adult.
It might seem like the current financial climate is the worst time to invest in extra support for volunteers who might be vulnerable in some way, but supported volunteering, pays dividends. Check here for great little film showing how Jenny, with Asperger’s found new confidence and skills and boosted intergenerational contact between local youth and older people through supported volunteering).
At BTCV, volunteer officers are aware of the impact of “green heros” likes Michael and Tom. Senior project officer Rachel Miller, who nominated Michael says: “His can-do attitude, where there are no barriers, has been an example to us all.” Tara Hares, volunteer officer who works with Tom, adds: “He turns up raring to go, he doesn’t allow his issues to affect the work he is doing..I feel proud working with Tom, knowing what he has been through and he is still funny, and brilliant at what he does. I’m pleased and proud to work with him.”
Watch this quite lovely film, introduced by Sir David Attenborough, which features both Tom and Michael and other inspiring volunteers:
http://youtu.be/GSCattrH3bA
* On a related note, the Hardest Hit campaign run jointly by the Disability Benefits Consortium and the UK Disabled People’s Council has organised several events tomorrow, Saturday 22nd, in protest about the impact of cuts on society’s most vulnerable – a community that includes people whose needs echo those of Tom and Michael, above. More information on what’s happening tomorrow is here.
We need more of this: young audiences enjoy accessible and inclusive performance at London's Unicorn Theatre. Pic: Alastair Muir
Anger, frustration, embarrassment, guilt and despair. Depending on what unfolds on the stage, the range of emotions you experience at the theatre can be extraordinary. But what if those emotions are triggered not by the actors, but by a fellow audience member, or a member of the theatre’s staff?
This can be the fate awaiting theatre-goers with a learning disability or those who have the temerity to attend a show with someone who happens to have a learning disability, as the father of autistic 12-year-old Gregor Morris found to his disgust earlier this year.
I had an unpleasant experience when I took my sister to a West End musical, although our shoddy treatment was at the hands of small-minded fellow punters, not any members of staff.
Something similar happened when four-year-old James Geater from West Sussex went to the Theatre Royal Drury Lane in London in August. As James’ mother Karen said at the time, James is part of society and children and adults are losing out through no fault of their own – and Gregor’s and James’ stories are only those that have been reported.
As for the family of Gregor Morris, they took their campaign to the internet, and now they have more than 4,100 supporters on Facebook. Earlier this week, their awareness-raising drive, backed by the National Autistic Society, culminated in a major event at London’s Unicorn Theatre. The day-long forum, Autism and Theatre: An Industry Inspiration Day, brought together theatre staff and autism experts.
It was apt that the Unicorn hosted the day; it specialises in theatre for children and young people and has long been an inclusive and accessible arts venue with autism friendly performances.
Suspended from a hanging chair with an arial performer at Unicorn's recent Something in the Air show. Pic: Alastair Muir
The hope, say organisers is that the event will create “long-lasting cultural change” and help spread the word about existing access work in the theatre industry. They hope to spark similar awareness days regionally and lead to better interaction between local venues and families affected by autism.
I wasn’t at the event but apparently around 200 theatre industry types attended to learn more about autism, hear from the families affected by access and inclusion issues and discuss best practice. Actor Jane Asher, president of the National Autistic Society spoke about the fact that simple adjustments in theatres could boost access while training staff can also make a huge difference.
There are, of course, various initiatives to make the arts more accessible, the Autism Friendly Films project is just one. The Unicorn Theatre has pioneered sign-interpreted and autism-friendly screenings and performances.
Awestruck and at ease, watching at the Unicorn Theatre. Pic: Alastair Muir
Unicorn staff get autism awareness training and performances feature smaller audience sizes and a chill-out room with activities for anyone who needs some time out. A “familiarisation visit” is available the night before a show, to reduce anxiety and stress for first-time theatre-goers (this, I think, is utter genuis – and so simple and inexpensive for other venues to adopt) and the theatre has a dedicated access manager. This weekend sees the latest access-friendly show, Billy the Kid and the venue is also hosting the Art for Autism exhibition that I’ve blogged about before.
While the mind boggles as to why this kind of large-scale theatre industry event hasn’t happened before and why it took pressure from a parent campaigner to mount, it’s better late than never. The great practice and partnership that exists needs to be widely shared, so the work of the most accessible and inclusive venues trickles down regionally and locally, reaching beyond the big towns and cities that boast the biggest venues.
If the theatre sector debate translates into visible action, people with learning disabilities and their families can see shows they love without paying through the nose for a half empty box, going out of their way to attend midweek matinees which tend to be less busy and therefore often less stressful or – worst of all – having to leave before the end, either by request or because they feel unwelcome.
And more accessibility combined with a welcoming and understanding attitude should make commerical sense in theatreland. The economy might be suffering but the Society of London theatre estimates that box office takings totalled half a billion pounds last year, so there’s a bums on seats reason to attract more and younger theatre-goers into the auditorium (staff just have to be prepared for the bums to defy convention and to wriggle on and off seats during the performance).
I’m eager to see how this week’s event is followed up although I wonder if the organisers missed a trick when they tagged the day only on autism. While those with autistic spectrum conditions can require very specialised care and a unique, tailor-made approach, I’d hope that theatres can appreciate the needs of all of those with special needs, many of whom don’t necessarily have a label for what makes them different.
It’s a niggling point however, and if the event fires debate and pushes theatreland to develop a more consistent approach to its treatment of all audience members, then what matter? It’s worth noting that event co-chairman Jonathan Meth, a theatre consultant, arts tutor at Goldsmiths, University of London, and parent trustee at Ambitious About Autism, acknowledged the need to broaden the debate’s remit, saying after the event: “While the day was focussed on those with autistic spectrum conditions, we hope it was both an inspiring and practical day for all those who want to make the experience of different people coming into their theatres an excellent one.”
The other side of the theatre access and inclusion coin involves seeing more actors of all abilities onto the stage. A combination of user-friendly theatres and more integrated performances would support the kind of cultural shift discussed at the Unicorn earlier this week. How can people who behave, sound or move differently or don’t look quite like “us” be fully welcome in an audience that has never had the chance to see them perform?
I’ve blogged before about the great work of Heart n Soul, for example. On a more general disability arts tip, I’ve also just been reading about the work of another group, Accentuate, supporting projects encompassing the arts, culture and sport to change the way disabled people are viewed, the project is hooked on the Paralympic Games.
When I heard about the Autism and Theatre event, I was reminded of the innovative work of Speakeasy Theatre Company, which aims to integrate actors and audiences of all abilities. The simple words of artistic director Andy Reeves on a recent piece of work could be a motto for the companies that run theatres: “Our goal is for everyone – disabled, non-disabled, young, old – to come out with a smile on the outside and a warm feeling inside.”
A well-known playwright once compared life to a play. If all the world was a stage, movement between the two might be more fluid, giving us a better chance of reflecting society’s many facets on the stage and in the auditorium.
* The Facebook campaign and debate sparked by Gregor’s experience is at www.facebook.com/groups/greenwicked
Supporting people to make the most of their community, pic: CareTech
Seven years ago, no one could have imagined Martin* living anywhere but in residential care. The then 24-year-old, who is autistic and has a moderate learning disability, was exploited by ‘friends’ who dealt drugs from his housing association flat in London, leading him to lose his tenancy. Head to the Guardian Social Care Network for the rest of my piece on the importance of transition services when supporting the vulnerable to move from residential care towards more independent living.
It was the sort of toxic mixture of elements and multiple assault on the senses that would until recently have triggered some challenging behaviour in my sister; a bustling crowd, loud music, the company of strangers and – to add insult to injury – an extraordinary day with no familiar routine.
But not only was 22-year-old Raana Salman at the very heart of the carnival throng in my parents’ Sussex hometown during the recent Bank Holiday weekend, she was loving every noisy, overcrowded minute.
Wearing a pink fairy costume and a wide, joyous grin, she was a proud participant in the Ferring Country Centre carnival entry as part of the learning disability charity’s float in the Worthing carnival. She even featured in a photograph in the local newspaper.
My sister, Raana, in her Ferring Country Centre tee-shirtRaana Salman - carnival queen
The hand elegantly pointing at onlookers with a homemade wand (beautifully fashioned from a battered old Christmas tree star and a cardboard wrapping paper roll) was the same one that would flap incessantly or claw at my mother on fractious days out when something was unfamiliar or overwhelming.
It was the same hand that several years ago would frantically gouge out the skin on her other arm during an anxiety attack. This is what happened the time I mistakenly thought she’d be pleased with a trip to my new place in London; her worry and tears escalated the closer we got to my front door, and failing to placate her, I just drove her back to Sussex.
And I’m delighted to say my shameless promotion of her progress continues apace. This summer, she spent a few days at the Ferring Country Centre, learning social and life skills through activities and enjoying day trips that boosted her independence and widened her horizons enough for her to join in the carnival parade.
The centre has grown since its launch in 1986 by a group of like-minded parents who recognised the need for a workplace-based setting for vulnerable adults. The aim is to boost social inclusion for the learning disabled, supporting them to play a valued role in society through training and work experience.
The scheme’s garden centre grows plants and vegetables for sale to the public with the project’s participants helping in every aspect of production. The riding therapy lessons are taken up by 600 learning and physically disabled adults and children every month. People with disabilities also work in the café and the scheme’s small animals farm while off-site, they get involved in community projects, including newspaper collection and gardening.
When I asked Raana if she’d mind me writing about her latest experience, she nodded: “I loved it. I want to do it again next year.” And when I asked what the best thing about the Ferring centre was, she said proudly “my top”. Her answer didn’t really surprise me; the logoed tee-shirt and matching fleece are badges of honour for my sister as they demonstrate that she belongs to a community and they make her feel – very officially – valued. Do check out the Ferring project’s gallery to see more pictures of what this excellent centre does and to the team there – thank you, you’ve made our summer.
However, as grateful as I am for my sister’s progress, I never take it for granted. While she is currently so well-supported, others are in unhappier situations and the funding future is less than rosy for disability services. As campaigning organisations like the Learning Disability Coalition (LDC) and Voluntary Organisations Disability Group (VODG – note of transparency here as I also manage the group’s blog) have made clear, government cuts are a massive threat to disabled people while current funding rules are in desperate need of an overhaul.
Next week, 13 September, the Welfare Reform Bill has its second reading in the House of Lords and there is a very real fear that people with disabilities will lose out in the changes. Disability Living Allowance (DLA), for example, is used by the disabled for daily living costs but the government plans to replace it with Personal Independence Payment (PIP), which will save it money. But a recent survey of 2,200 people by charity the Papworth Trust, shows that the changes under PIP would mean 86% of disabled people would be forced to cut back on food or transport. There is a growing fear – and now growing evidence to suggest – that cuts are unfairly falling on the disabled.
For how long will young disabled adults be able to access the same activities and support as my sister in such a climate?
This week, Raana is back in Hampshire, getting stuck back into living, learning, socialising and working. Her work in the Lantern Community’s amazing shop, for example, now includes more responsibility for stock pricing, something of which she is very proud. Raana has so far not only achieved more any of us can have hoped for, but there’s a very real sense that there’s much more to come.
And I think for my parents, who know they shouldn’t but can’t help but compare Raana’s development with that of her two older siblings, it’s worth noting that I’ve certainly never been in a carnival parade and now I’m not the only one in my family to make the front page (note the tiny pink and white wand-holding figure in the centre of the throng). The only difference is that while I can write the news, I’ve never actually made it.
A mini-post to bring you something I wish I could say I’d made earlier (given it’s the summer holidays and my kids are off school…). I mentioned this campaign on Twitter a few weeks ago, but liked the idea enough to share a couple of images of the creations already made:
The images here are from the Make With Me campaign, learning disability charity Mencap’s new make and bake appeal. The campaign encourages people to get creative with fundraising parties to show their support and raise money for the UK’s 1.5m learning disabled people.
For more inspiring pics and creative ideas check the campaign’s Facebook page along with some images on the online gallery, including a Bob the Builder in gingerbread..(this might have to become something of a pictorial theme for The Social Issue).
Hardly earth shattering news that teenagers like playing music, chatting at coffee shops, learning to cook (if their parents are lucky) and hanging out with their mates – but how often do you see learning disabled teens doing the same things?
Young people with learning disabilities can face massive barriers when it comes to enjoying the same things as their mainstream peers – often because of prejudice rather than because of a physically inability to cope with the task involved.
I’ve had the misfortune to experience this prejudice with my sister, as have the family of 12-year-old Gregor Morris – forced to leave a West End show for laughing too loudly (it was Wicked for crying out loud – not Chekov).
Which is why we need more of the kind of ad campaign that Mencap’s just launched. The learning disability charity filmed Ellen Goodey, Ben Morse, Kirstie Andrews, Matthew McCarthy and Dharmesh Ladd carrying out everyday tasks like any other young people.
Now I can’t stand reality TV, but frankly, I’ve never been more pleased to watch a bunch of young unknowns doing extremely ordinary things.
Ben Morse at the keyboards in the Mencap ad
Mencap’s new ad, says Mark Goldring, the charity’s chief executive, is a step towards a more inclusive society: “We need to see more positive role models of people like Ellen, Ben, Kirstie, Matthew and Dharmesh on our TVs and in public life to help remove the stigmas associated with disability.”
Matthew McCarthy cooks in the Mencap film
The national TV, radio and print advertising campaign aims to raise £300,000 – the short film explains that if you buy any Procter and Gamble products available at Co-operative Food and Co-operative Pharmacy stores, you help raise funds for Mencap and sister charity ENABLE Scotland as part of The Co-operative’s Charity of the Year Partnership. The promotion will run for six weeks nationwide, with Procter and Gamble donating 3p on each product sold from over 20 of their brands. So now (can’t resist this…) you can wash, and go raise awareness.
Mencap's Ellen Goodey stars in the new ad
Money raised will go towards launching a programme called Inspire Me, aimed at working with young people with a learning disability aged 16-25, their parents, carers, and local communities, to overcome the exclusion and prejudice by providing activities and training, together with volunteering and employment opportunities.
You can watch the ad here:
Ben, one of the stars of the new ad campaign, also features in this previous Mencap film where he and his mother explain how he’s been verbally abused, spat on, pelted with stones and “too scared to leave the house” because of bullying. As his mother, Charlotte says, you can’t wrap a child with learning disabilities in cotton wool “because they’re not learning any of those things they need to learn to be indepdendent”. No better words to show why the campaign is worth supporting.
I recently blogged about Create! Art for Autism, a national art competition run by Beechwood College, a specialist residential college in Wales. The aim of the project was to show that art can not only encourage learning and instill lifelong skills but boost quality of life and future prospects.
The awards ceremony took place at the weekend – more than 350 entries were received from 52 different schools from all over the UK, and as far away as India and Croatia – and a couple of the very worthy winners are here:
Angel, by Sam Fitzgerlad, Create! Art for Autism winner (pic credit: Huw Evans Agency)
The Digital Category was won by Sam Fitzgerald, above. Angel, the work by the 18-year-old from St Cenydd School in Caerphilly, was praised by judges as having a haunting and metaphysical quality.
Esther Whitney, Aged 24 from Birmingham City University won the 3D Category prize for her sculpture, A Thimble Full. Esther’s work was inspired by her difficulties with social interaction, with the thimbles representing that a thimble full of relationships can be enough for young people with an autistic spectrum disorder. The award was presented by Lucinda Bredin, Editor at Bonhams Magazine and member of the judging panel, who complimented Esther and the other finalists on the “detail, depth and complexity of their work.”
A Thimble Full by Esther Whitney, winner, Create Art for Autism
The prize for the Teacher’s Choice Award was presented by Darren Jackson, Principal of Beechwood College to Alexander Fox-Robinson, aged 15 from Pembroke School, Pembroke for his pencil drawing, The Blitz, which featured in my previous blogpost on the competition.
The Blitz, by Alex Fox-Robinson
The finalists’ work is on display at The Old Library, Cardiff until Sunday August 7 and will move to London early in the autumn. For more information contact Create! Art for Autism. The amazing amount of entries to the competition shows the vital nature of platforms to showcase the talent of young people like Sam and Esther and the organisers say that next year’s competition will include even more categories.
