Category Archives: Learning disability

All-embracing arts

Some of the UK’s most inspiring performers are taking part in a two-day disability arts showcase that kicks off in Leicester tomorrow.

Embrace Create Connect, 15-16 March, is a national conference for performers with a learning disability and for those who work with people who have a learning disability.

Movers Theatre Company (pictured here performing The Sorting Office, 2009) feature in the two day arts extravaganza

The event, which takes place at Embrace Arts, Leicester University’s arts centre aims to share learning and present the huge and rich range of learning disability arts work, connecting performers, producers and promoters.

A scoping document for the event, Written by Andy Reeves, artistic director 
of the Leicester-based Speakeasy Theatre Company (I featured the participatory arts company’s great work here) describes the East Midlands as “an interesting region in terms of performing arts and disability” because activity from the sector has learning disability, rather than physical disability, as its primary focus.

Anna Pearce and Hanna Sampson in Shadowed Voices, part of StopGAP Dance Company’s trainee programme

There’s tons of good stuff on the conference agenda. Performances include Heavy Load, StopGAP Dance Company, Club Soda and Movers Theatre Company. Other artists include Bamboozle and Salamanda Tandem.

Participants can get involved in workshops and debate with Action Space Mobile, DIY Theatre Company, Stay Up Late, Unanima, Oska Bright and more.

Tomorrow’s event is more positive movement in the field of inclusive arts. Events like this should help discourage the kinds of assumptions that leave many people with a learning disability excluded not just from the stage, but from the audience.

As Reeves acknowledges in his scoping report, while there is “a wealth of interesting learning disability practice happening nationally and regionally”, connecting up this kind of work “is much trickier”. Tomorrow’s unprecedented event will, buoyed by the strong vision of the companies and artists in the region, kickstart a learning disability performing arts network in the region.

Netbuddy: the special needs Mumsnet

Netbuddy's Emma Sterland and her brother, Ben (pic: Netbuddy)
When Emma Sterland’s older brother Ben, who has Down’s syndrome, was three, their mother saw another child with Down’s walking past their Surrey house. Back then, in the late 1950s, learning disabled people were hidden away in institutional care, and it was the first time June had seen another child like Ben; she ran into the street to shouting: “I’ve got a son like that!”

In the absence of today’s official support networks, a lasting friendship began between the two mothers.

June could have done with Netbuddy, the self-styled “special needs Mumsnet” managed by her daughter, Emma. Just 18 months old, it crowdsources tips, attracting 6,000 new visitors a month and reaching 4,000 people a month via Facebook. Continue reading the rest of my piece on the Guardian’s social care network.

Netbuddy founder Deborah Gundle and son, Zach (pic: Netbuddy)

A photographic platform for learning disability

Had to share these images from a forthcoming exhibition created with people who have learning disabilities.

The show, The Girl With The Heart Shaped Hands, opens on Tuesday March 20th and has been organised by learning disability charity Outreach 3Way. The aim is to improve the mainstream representation of the 1m or so people in the UK with learning disabilities and reflect the personalities of each participant.

The eponymous girl of the show’s title is 38-year-old Samantha Wheeler who lives in Crawley and uses Outreach 3Way’s day centre.

Samantha Wheeler , whose pose lends itself to the title of the art exhibition

The images were taken by photographer Maria-Aurelia Riese who says she hopes the pieces “act as a gentle way of building understanding”: “There is a natural human reaction to feel awkward around those who look and behave differently from what we are used to. Once you really see someone for who they are that melts away. I very much hope this exhibition has that effect.”

Tom Ogle, also featured in the new art show

Participants in the exhibition submitted mini-profiles of themselves, to show the person behind the photo. Tom, 43, above, for example, enjoys “sports, drama, swimming, bicycle riding, listening to my music, walking into town and eating out” and is proud of his drama work. His dream for the future is to do more drama and “get married to my girlfriend.”

Portait of Matthew Dawson

The girl with the heart-shaped hands runs from 20th March to 1st April at Chichester’s Oxmarket Centre Of Arts. You can find out more about the free exhibition here or on the website for learning disability charity Dimensions, which Outreach 3 Way is part of.

“Information about autism is better coming from someone who is autistic”

Simon after winning his award for public speaking on autism from learning disability charity Dimensions

By Simon Smith

My mum and dad realised something was different about me when I was about two to three-years-old, because I played differently to other children. I didn’t engage and interact with others. I didn’t cuddle or give eye contact. I had difficulties with speech and hated change.

I started realising from the age of 14-15 that people were treating me differently and this is when I first realised that I was different. At first I felt kind of annoyed about and wondered why I was getting all the attention. I then asked my mother what was going on with me. She told me I was different to the other kids. First of all she told me all the good things about me; such as my brilliant memory and amazing empathy with animals. She also explained why I was having difficulties in certain areas such as making friends and interacting .

I was diagnosed when I was five. I went to a mainstream school with a statement of special educational needs. At school had I one-to-one support, speech and language therapy. I also attended a behaviour unit and later on had support from the Autistic Spectrum Condition Support Services which came into my school to give advice and support.

Being autistic means I am someone who feels and sees the world in more detail then people without autism. I have heightened senses such as sight, taste, touch ,smell and hearing . This means that I can find things incredibly annoying that wouldn’t bother other people or in some cases it means that I find things more interesting.

Looking back, it was when I started school things became a huge challenge. People often thought I was a trouble-maker (mostly the teachers due to their lack of understanding of my autism and my behaviours). Other students often found me very strange and in some cases would be cruel; bullying me because I was different. Being treated badly by people who didn’t understand me made me very negative about my ambitions and myself which still affects me today. The other thing that makes me different is my obsessions, but I’ve used to help guide me through tough times and they have also created opportunities and brought me success, like the award.

At the moment I have no support except from my parents because the local authority says I don’t meet the criteria.

At the end of last year, I won an Erica Award from learning disability support organisation Dimensions for the talks I do about autism. The annual awards celebrate people with autism who help others. It’s nice to feel appreciated for the hard work I do. I’m very honoured by it and I still can’t believe I won it.

Simon, who loves animals, at home with Rona, the family's dog

My talks came about when my mum was working with pre-school children with autism so when one day she asked for some advice on how to support a child, it made me think back to when I was a child of the same age. I looked back on what made things hard for me and told my mum what it was like from my perceptive. I told mum what it was like for me being autistic and how it affected my everyday life.

My mum said she learnt so much more about autism from me that day that she thought it would be really helpful for other parents. She arranged for me to do a talk to the parents of other children like me.

My talks cover a lot of areas including sensory issues, how my brain works, how I learn to communicate and socialise, my repetition,imitation, obsessions and my behaviour issues. I also offer general advice and strategies to help support people and the opportunity to ask questions. I give out evaluation sheets so people can comment on my talk if they want me to add or change anything.

The feedback is amazing. One parent has written: “I got home yesterday and saw my son from a completely different perspective, thanks to your insight and inside knowledge of autism” and a professional commented: “Simon’s talk was super every trainee teacher/nursery/pre-school worker in the country should meet Simon and hear his experiences. I learnt more in one hour about autism that 20 years as a teacher have ever done. I feel very uplifted and look forward to sharing/reflecting to my colleagues.”

I feel happy that I am going to try and give advice which might help people that I’m talking too. Afterwards I feel mentally tired as it takes a lot out of me and I need feedback from people because I find it hard to tell how well I’ve done.

The feedback from my first talk made me want to help more parents, so my mum asked Amaze – an advice service for parents of children with special needs – if they could help. Through Amaze I did a talk to 27 parents. These parents requested that I spoke to the professionals that they have to deal with because they felt that they were often not listened to. So my mum arranged for me to do talks for professionals such as respite services, PRESENS (Pre-School SEN Services) and two local special schools. I do talks for professional services and parent support groups and have done two workshops at a conference.

It makes me feel uplifted to know how much people appreciate my talks, to be told how much of a difference I am making in helping them to understand more about autism from a personal perspective and this encourages me to do more. I believe that information about autism is better when it comes from someone who is autistic.

My plan is to do more talks and to encourage other people with autism to do them with me and to continue my mentoring. My biggest aim would be to form a group of people with autism who would be confident to be able to attend any meeting regarding anything that might affect people who have autism because I feel it’s very important to have individuals with the problems to speak out and have a voice.

I would like to make councils and governments have someone with the learning disabilities or someone with autism actually on board, attending meetings and giving their own personal input which I think we can all benefit from. If I could get the government to do one thing it would be to consult more with the people that experience the conditions that they are making policies about to get their points of view.

* Simon Smith, 23, from Brighton, won the 2011 Erica Award because of his outstanding contribution to helping others understand what it is like to experience autism.

12 days of Christmas, Social Issue-style

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

Six(ty) volunteers

Young volunteer with City Corps, Rodney WIlliams

Seven(teen) pairs of wellies

Abandoned festival rubbish, Wales, gets recycled for the homeless, pic credit: Graham Williams

Eight(een-years-old and over) people campaigning

Participants in the Homeless Games, Liverpool

1950s hall revamping

"The kid who talked of burning down the place is now volunteering to paint it."

10 lads a leaping

11-year-olds integrating

Children's al fresco activiites at the Big Life group summer scheme

12(+) painters painting

View from the Southbank of Tower Bridge, Aaron Pilgrim, CoolTan Arts

Merry Christmas and Happy New Year!

“Care is about people, it’s not just a process”

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.

Another Way: transforming people’s lives through good practice in social care, is a response to the Winterbourne View scandal earlier this year which involved the abuse of people with complex learning disabilities at a care unit in Bristol.

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.

The world’s most common – but least known – inherited learning disability

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

From homeless to hero

Tom Hodson at the Ancient Technology Centre, Dorset. He has just won a BTCV Green Hero award. Credit: Professional Images
Tom 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.

Autism and theatre: good work waiting in the wings

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 event was a partnership between the Ambassador Theatre Group (the largest owner of theatres in the UK – making great amends as owners of the theatre Gregor Morris was ejected from), the Unicorn Theatre, National Autistic Society, Action for Children’s Arts, Theatrical Management Association and the Society of London Theatre.

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

* All images of Something in the Air at the Unicorn Theatre, London, by Alastair Muir

* Click here for information about the Unicorn’s current accessible performance, Billy the Kid and here for information on the Art for Autism event.

The vital role of creative thinking in care

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.