A Thpethial evening

Ria Lina.  Mother, Phd level scientist. Producer of West End cabaret. Performer. Comedian. Singer and musician.  In 2012, I personally added something else to her list of personal properties, all achieved before hear early 30’s.  Ria is on the spectrum.

When I first explained to Ria whom and what she was, I had no idea she would translate it into performance.  Silly me.  She proceeded to use the medium of stand up comedy to reflect on her new found reality.  But typically for these things, the motivation was due to a bad incident.

This year Ria’s joking about the difference between the term ‘special’ and the slang expression ‘Thpethial’ (said in a way that denoted low IQ and overall capacity) caused some controversy. Which caused Ria to think about why this had happened and to produce an entire show focused around the debate. 

We are led into a world of neurodiversity, something she explains she’d had no idea about, through the entertaining mediums of jokes (wry comments you have to react to) and deft use of a ukulele.  Ria is no ordinary woman commenting on a diagnosis.  Having previewed her show in the basement of the National Autistic Society, she took it to a prime Edinburgh Fringe venue and did a well received three week run. 

The concept and particularly the title have already attracted more criticism.  Ria’s show is not offensive at all, rather she tries to make sense of her new found reality – which actually has always been the case.  Who or what are you as someone of her accomplishments and ability when it turns out you personally are ‘special’?

One major point Ria makes is that in order to express the reality that we both share, you have to use phrases and terms reserved for people quite unlike us.  But so far, that is as much as our society has given us.  Ria’s show represents a start in bringing a whole new frame of reference to our society, and very funnily too.  She is to be congratulated in her first attempt to express, as nicely as possible, what it is like to find the answer to a question you never knew your family and yourself faced?  What are we?  Why are we the way we are?  

So don’t worry about the title.  Because ultimately Ria challenges that even the ‘special needs’ amongst us should accept that they are not so totally sacred and precious that they cannot be targets for comedy.  Far from it.  All through our ‘special’ lives, we people living with autism are constantly facing ridicule and the attempts of others to express how our reality can be perceived.  Ria tries to show that these taunts are also perfectly valid and universal perspectives.  

We who are relatively disabled cannot bury our heads in the politically correct sand, and pretend the rest of the world is not out there.  Ria’s show is ultimately an attempt to ‘get real’ about ourselves.  I think it works too.  I challenge anyone to find anything quite like it. 

Review by Paul Wady

Ria is performing 'Thpethial' on 12 and 14 November at The Lounge at Leicester Square Theatre. You can buy tickets here: http://leicestersquaretheatre.ticketsolve.com/shows/873503418/events

A social group for adults with Asperger Syndrome in Somerset receives funding boost

The Yeovil Pub Hub has been running successfully covering the South Somerset area for more than eight years but has had no funding for the last 18 months.

 

The group is run by three volunteers, Deborah Gingell, Tara Gibson and Martin Doyle and after funding was withdrawn they continued to run the group which holds monthly meetings at a pub in Yeovil.

 

With no money to organise nights out such as bowling or barbecues, the volunteers applied for a competition run by local newspaper The Western Gazette.

 

Called the “Wish For Cash” campaign, organised by the Yeovil Round Table, entrants had to write about their club/organisation and say why they needed some funding.

 

The Yeovil Pub Hub was selected as one of the 30 finalists and volunteers and members then spent the next four weeks actively campaigning in the local area to raise awareness of their group.

 

Voting vouchers printed in the paper had to be collected with local readers voting for which group they felt most deserved the cash.

 

Deborah said:

“We were up against some very stiff competition with some very deserving causes and groups and we were amazed to find we had been placed in the top 10.

 

“As a result of collecting hundreds of votes we were told we had been awarded £400 which is a massive amount of money for our group.

 

“Due to the publicity we received we have also been given a kind donation of a further £100 from Shape Financial based in Stoke-sub-Hamdon which will be spent wisely and provide some fun nights out for our members.”

 

The Yeovil Pub Hub is a fantastic group which is regularly attended by around 20 members who meet up to enjoy a drink or a meal and enjoy a social night out.

 

For many it is their only form of social contact and provides a friendly and supportive atmosphere where they can go out to the pub and know they will feel secure among friends.

 

Some of the members and volunteers were invited to attend a special ceremony where they were presented with a cheque by the chairman of Yeovil Round Table (pictured).

 

Deborah Gingell, Yeovil

MY LIFE AS AN ASPEY

Hello everyone, my name is Orlando Bolt; I am 25 years old from West London, England. I am a professional dancer, actor, model, singer and designer. I have Asperger’s Syndrome. I was diagnosed with the condition when I was 14 years old and life for me growing was a hard one and a challenge. I am writing this because I want to share my story to others that have Asperger’s and to parents/families or carers.

I would say that the beginning of my life was a strange, difficult time in my life. As a child my world was different and interesting in my head. My world which I call now “Orlandoland” was my security and sanctuary. My family are the best. There is so much love and fun. My mum and dad gave me so much love and support growing up that I felt safe. I was very close with my baby brother, grandparents, cousins, aunties and uncles that things didn’t seem so bad and because of that I had a joyful and fun childhood.

But outside of the family unit, I felt alone, insecure and afraid. I felt like the whole world was my enemy and I found it difficult to make friends. Only certain adults I could speak to and tell them my fears.

I love performing arts and I started doing it when I was around six. I loved watching Michael and Janet Jackson when I grew up and I see Janet as a big inspiration to be. Her music has helped me through so many difficult times, struggles and obstacles. My mum enrolled me at Sylvia Young’s Drama School in 1992 on a Saturday doing Tap dance and speech therapy to help me with my speaking. Performing for me was a god send and I could express myself and be a star, forgetting those insecurities I had.

Through high school,l which was one of the most difficult times in my life, I put my energy into Art which is my natural talents and drama, music and dance.

After seeing Janet Jackson MTV ICON show, I wanted to be a performer in the future and I was determined to make that dream of mine happen.

Getting a diagnosis was hard - I remember as a kid going to a counselling session with my mum and not understanding why I was there, why I had to go and not my brother. I felt different and worthless, like I was a moron. I was frightened and angry. I hated who I was and with other tough and difficult things I was facing in my life at that moment, I kept asking myself, why is this happening to me, why is God punishing me. That’s when I started to rebel. Other kids influenced me to not good places and fell off the tracks of positive thoughts.

I understood now why I was being judged and treated differently by others and began closing into a shell. Luckily for me, the only people I could rely on or talk to was my family. My older cousins are mostly girls and they are like my older sisters and I felt comfortable talking to them about anything.

By the time I was 18,, I had more of any understanding about society and being an adult and I felt it was time to do what made me feel happy. I told my mum and dad that I wanted to performing arts and not art and design, it doesn’t make me happy. That rebellious side began to evolve even more. So I enrolled at WAC Performing Arts and Media College - it was a different experience from any other I have ever faced. I knew that if I wanted to do my own thing, I had to speak up and face my fears. I did drama and singing and for the first time, I found somewhere where I felt safe but could express myself. I loved it and I would go there without fail

Whilst I was at WAC, there were different projects for different people. One of the ones that were there was Wonder WAC, which provided projects for young people with Asperger’s and Autism throughout the spectrum.The day of my first project - I was scared and didn’t know what to expect. I was paired up with another worker on the trip to take care of a young Autistic boy over the week. He seemed as fearful  of me as I was scared of him, but after a while, I felt comfortable and this autistic vibe helped me understand him. After the trip, I wanted to know more about Asperger’s Syndrome and the aspects of it.

My dad sent me to this autistic workshop in Islington, North London, called Prospects which was run by the National Autistic Society. I met my social worker called Justin; He was nice, friendly, made bad jokes and had a real passion for me to succeed. In the beginning, Justin and I worked one-on-one to help me find employment after I quit my job. Through the sessions, I began to develop life skills and employment advice. 

I asked Justin if I could work in a special school for Autistic people, he said he would help me get my request. He thought it would be good for me. I did a work experience at the Acton Day Centre in West London for a week and experienced what Autistic and Asperger’s people who weren’t as independent as me did an on daily basis.

I found a new found respect for Autistic/Asperger’s people as well as carers and support workers. These experiences through that whole year changed my life.

Now that I had an understanding of what Asperger’s Syndrome was about and how others lived their lives, I had to fight and drive forward.. In 2007, I began starring in productions such as the musical Dreamgirls, Jim Cartwright’s play Road and feature in music videos and feature films like Doomsday and Franklyn. My parts weren’t big but I was starting out and loved every moment of it. I felt that I needed to do professional training even though I did so many short courses. If I look in my folder of certificates I have probably 10 of them woooooooooooooowwwwwww!!!!!!!

I went back to WAC on its newly accredited National Diploma course in Musical Theatre.

I was thrown into the deep end as this was training I’ve never experienced before but me being the fighter that I am, I didn’t want any hand outs or special treatment. I wanted to be a normal student and trust me I got my licks. The course had a lot of financial troubles where I had to stop and take a year out. I didn’t quit performing, I just continued and began going to open-mic nights and finding other productions to get involved with. In that time, I began meeting more people than I probably I have ever met in my life. I started promoting myself in the industry through Facebook and Twitter.

I remember doing some productions on the diploma and the feedback was amazing that I was inspiring a lot of young boys to become somebody, I didn’t really acknowledge it, and I thought people were being nice to be nice.

Now that I have finished my diploma, I have been in many productions including the London 2012 Paralympic Opening Ceremony as a dancer. Life for me is so good right now and I still work with Autistic people on projects.

I write this story as how I overcame obstacles and life experiences of what a positive outcome Asperger’s has and to be honest the lucky ones are those children who have been diagnosed very early, they have a better chance than I did. With the right people in your life, you can make mistakes and not feel bad. I just want to thank all my beautiful family and friends and enemies for making me stronger and excel into becoming a strong and happy individual.

IF I CAN DO IT, ANYBODY CAN DO IT, YOU LIVE ONCE, MAKE SURE YOU HAVE A LIFE, IT ONLY HAPPENS ONCE. Xxxx

Orlando Bolt

                                    The End.

Karen's campaigning in Cheshire East

SEN Provision for children without a statement

In March 2012 we had a meeting with Child and Adolescent Mental Health Services (CAMHS) to discuss next steps for our son as we had been told about Individual Pupil Funding (IPF) as a stepping stone to a statement. Whilst at the meeting it became apparent that IPF was ending the following April so they suggested that we go for a statement.

You can imagine my surprise then, when in February 2013 a parent posted a letter on our parents/carers forum on Facebook that she had received from Cheshire East informing them that IPF was ending in the April 2013  –  talk about short notice! I was shocked that the council had waited until February to notify parents when CAMHS obviously knew last year!

I have recently discovered that IPF was a Cheshire East initiative to cut down on the wait for pupils to access funding for support, so for it to have stopped so suddenly is outrageous.

The amount of posts on the forum was phenomenal; I knew I needed to act. So as part of my role as an Ambassador for The National Autistic Society, I contacted our local MP.

Luckily our MP has been very supportive of parents with children with Special Educational Needs (SEN), especially those with Autism. In my letter I included comments from the forum so that he could see what impact the cuts were having on everyone, not just children but also teaching assistants losing their jobs.

He was fully behind our concerns and I received a letter reassuring me that as part of the revised SEN Code of Practice it will have to show how they are going to meet the needs of children who don't require an Education and Health Care Plan.

Funding

But following a letter from my son's school, it became apparent that there was a funding issue which also needed to be addressed. The letter explained how the Government state that schools receive on average £10,000 which is made up of basic entitlement and additional pupil funding for children identified as SEN, but in reality the primary school’s allocation is £5,216.55.

Cheshire East is one of the most poorly-funded authorities in the country which means that SEN allocation is much lower than other authorities. I wanted to know why and get more information for parents.

So I got in touch with our MP again with the concerns over the cuts in funding and how it will affect children without a statement. He replied with the following attached reply from our Director of Children, Families and Adults:

“In order to attempt to further mitigate some of the funding pressures upon schools, I have taken the decision to release an additional £2m for SEN from the DSG contingency. Whilst this in itself does not eradicate the current pressures experienced, it does reduce some of the pressures and ensures that schools will have the SEN resources to meet the needs of those pupils with SEN with Statements.”

This was really good news but we were still concerned about the pupils without statements who have SEN, so we were encouraged to receive another letter from our MP. This time he said that he was organising a meeting with the Minister of State for Schools, Cheshire East Council and another MP to discuss the funding issues in Cheshire.

In the meantime I tried to encourage parents to be patient as they were eager to do protests about what was happening. I reassured them that while going down this route may take time, it might have a better outcome. Should this avenue fail, we could then involve media and protests.

I was then invited to attend a meeting with our MP, accompanied by another parent who was also concerned about these issues. He was pleased to inform us that after the meeting with the Minister and others, they had agreed to focus on three main areas which will hopefully help.

These are:

1) Autism school provision – they are now pushing for an answer from the Department for Education on the go-ahead
2) Capital funding for post-16 to be made available
3) Transitional arrangement funding for post-16

We were really pleased about this but there were other issues unresolved, such as job losses and cuts in funding for children with SEN without statements, the lack of information from Cheshire East Council and schools in general and the need to push for a meeting. He was fully behind this and was surprised that Cheshire East Council hadn't been forthcoming in providing information.

On the back of this, I’m now putting in a request for a meeting and listing the issues that he could try and help us with.

Making a difference as a Councillor

It has been over three weeks since I was officially elected as Councillor in South Heaton, in Newcastle. And what an exciting and busy time it’s been over the last few months, with a well-fought election campaign and many hours of pounding the streets and meeting people beforehand to gain the welcomed success achieved on 25 April. Not least grasping the opportunity to raise awareness for The National Autistic Society in personal campaign literature along the way. Every little helps!

It was great to be out and about meeting residents in the ward and feeling able to share my personal story and purpose for wanting to become involved in local politics in the city. As many families and individuals know there have been huge amounts of excellent work undertaken up and down the country by the NAS, other charities and public sector organisations over the years to support those individuals and their families living with autism, but as with all things more can be done to improve things such as levels of awareness, access to services, therapies, pathways to diagnosis, training for staff and real choice, to name but a few. The approach to all of the aforementioned is ever more important in the current economic climate where funding is limited and organisations are feeling the pressure.

Running for Council was a natural step for me personally, and one where I felt I could make my best contribution, having been inspired at the NAS training event in London by speakers, NAS staff and fellow Ambassadors. Being able to make a positive impact and contribution to improve the lives of people and families living with autism was the way I hoped to go forward and so the journey began.

Since being elected I’ve managed to take part in a ‘round the table discussion’ along with others about ‘Making Rights a Reality for Disabled People’ meeting Liam Byrne MP and Anne McGuire MP. It feels rewarding to see that the hard work to gain election success has provided the opportunity to feed into such discussion and perhaps even future policy. It is important to me that the views of real people, tackling and facing issues on a daily basis are shared with those who can make things happen! Even in the smallest steps.

For me this is just the beginning of a two year journey as Councillor (more beyond if I’m re-elected) to progress work towards a better life for all residents in the ward and across the city –impacting, challenging and debating where I can across health, social care and education and other services to improve quality and choice. As part of that work remit I intend to keep the vision of individuals and families in mind as I evolve into my new role and take on the great responsibility of serving the public.

Denise

Raising Awareness of iss facing those with autism from Black and Ethnic Minority (BME) Communities

Campaigning is a crucial part of raising awareness. Being on the spectrum or being the carer of someone on the spectrum is an experience that most people find difficult to comprehend. Therefore as difficult as it may be, we need to be the driving force behind campaigns that highlight autism and how it affects everyone around us.

On 12 February, the NAS, with the support of Diane Abbot, MP, launched a new project to raise awareness of the specific issues facing those with autism from Black and Ethnic Minority (BME) Communities. This was a one of a kind event which had a fantastic turnout and achieved attendance from MPs and Peers from across the political spectrum.

So why have a BME specific campaign?

In a report by NAS (Missing out, 2007) it found that 24% of BME children had been excluded from schools, while 78% said their local authority did not provide support to their children during exclusion and more than half of parents from ethnic minorities whose children have autism did not have a choice of school. BME parents were also “significantly” less satisfied with their child’s academic and social progress compared to their white counterparts. This painted a stark picture of access to educational services within the BME autism community.

Seven years on and these issues are still pertinent; more so, given that resources are rapidly declining and unfortunately those who demand services are more likely to gain access to them.

There are clear issues which highlight the plight of many people with autism within the BME community. Firstly, evidence about the prevalence of autism in various communities and its impact on family life is inconsistent. Evidence has highlighted that communities may not be aware of autism, their rights and relevant services. Finally, services that are available do not always meet the needs of these families.

For me personally, I have never thought about the link between ethnicity and disability and how a substantial amount of the autism community is currently facing double discrimination. I suppose this is more of a reflection of how insular the fight becomes for you on a daily basis that you lose sight of the bigger picture. Going to the event, was an opportunity for me to think about the greater impact current changes are, and most certainly will be, having on all of us. If members within our community are not able to access even the most basic help with regards to finding much needed support then we clearly are failing in our own roles as advocates and champions. I hope this event is one of many that will pave the way for highlighting this issue more and make accessibility to information that little bit easier.

I am delighted that we were able to get a substantial presence for autism within parliament and I am extremely hopeful that it will provide some much needed support to our fringe members who do on a daily basis feel even more marginalised.

PigPen tribute for Gabriel

PigPen held it’s first show in 9 months at the end of February in memory of it’s co-founder Gabriel Hardisty-Miller who passed away last year. It was held at the spiritual home of PigPen- The Macbeth, Hoxton. If you’ve been to The Macbeth and you’ve been to PigPen, you’ll know why.

Gabriel was the brilliant taste-maker and curator behind PigPen. He was a non-verbal young man with autism. During the four years of PigPen he chose a plethora of electric and excellent acts using his yes/no comm device. He was a tireless campaigner with the National Autistic Society, a role model for raising awareness and encouraging people to think differently about disability.

It was only fitting that all profits form the PigPen Memorial Show went to the NAS.

The proceedings kicked off with a poignant procession from Gabriel’s estate down the road to the Macbeth. The procession was part of the Dron Festival at Hundred Years Gallery, Gabriel’s famous PigPen throne (that he always sat on during the shows) was decorated with garlands of flowers and lights and processed with bell ringing family and friends.



From here the marathon of performances began. The first half of the show saw PP stalwarts Eddie Halliday, Robyn Steward, Bram Arnold, Captain Spoon and Charlotte Young take to the stage for acoustic and performance art sessions. Then followed a beautiful tribute to Gabriel by jazz singer Sarah Niles with Rob Grundel on keys. For anyone that remembers the Roy Davies Jr, Peven Everett dance floor classic- ‘Gabriel’, Sarah did the most moving version of this.

As ever, DJ’s Brian Turner (AKA Bram Arnold) and Good Grief kept the crowd bubbling in between acts with a trademark blend of soul, indie pop and odd music from their varied record collection. The vegan chilli ran out within the first couple of hours and there was the latest edition of ‘Snizz Comics’ by myself.

Christine Binnie (with help from Tom Madders of the NAS) ran the PigePen Art Raffle with gusto. With such a fantastic array of prizes it’s not surprising this alone raised £250. We had artworks by Robyn Steward, Lewis Heriz, Martin Kingdom and myself, Dean Atta’s debut poetry collection plus a £150 meal voucher at a fancy restaurant up for grabs. Needless to say, all prizes went to very happy winners!

The first half of the show ended with one of South London’s finest voices and began with the same- Mr Joel Culpepper (one to watch people), following him PigPen legend with a capital L- Tim Ten Yen, poet extraordinaire Dean Atta and despite motor troubles- Honkeyfinger with their trippy, sweltering blend of psych -swamp rock. How could we possibly fit in anymore you say? Well we did.

United Vibrations opened their set with their beautiful and moving piece ‘Don’t Be Sad’ and continued to uplift us all in a way only UV could. Finally DJ/Producer Noel Eeteks (who grew up in the house next door to Gabriel) took the helm on the ones and twos and saw PigPen well into the night.

Not only was this a very special night that managed to raise £520.60 in Gabriel’s name, it was also a show that saw Gabriel very much present. The acts he chose and nights he curated were an extension of his unique personality, it felt as though the PigPen Memorial Show was as close as we could get to having him with us again. It was a blast from an entertainment point of view, also spiritual to feel his presence again. A huge thanks to all involved- far too many to mention.

On a final note, many people have been asking me on the future of PigPen and Snizz comics, all I can say for now is watch this space….

Ben Connors