Category Archives: Uncategorized

Drawing and democracy: painting project to boost interest in politics

Artist Rachel Gadsden's works on her new project in parliament
Artist Rachel Gadsden’s works on her new project in parliament
Did you know Big Ben isn’t the name of the clock or the tower at the Houses of Parliament, but refers to the great bell inside the building?

How about the fact that the word “parliament” comes from the French, “parler”, meaning “to talk” (and yes, politicians could do with less rhetoric and more action).

These were just two facts my eight-year-old daughter pounced on during a recent family-friendly project at the Houses of Parliament.

This week is Parliament Week, a country-wide series of events that aim to engage people with parliamentary democracy. While the Houses of Parliament is one of the most instantly recognisable buildings in the world and children know its name, what goes on inside it is usually either a mystery or rather dull (unless, my daughter points out, you’re talking about Guy Fawkes).

Our recent visit was part of this year’s Big Draw event, although it reflects the ethos of Parliament Week. It involved an art workshop led by artist Rachel Gadsden to create four new works. Gadsden (who I’ve written about before here and here) is known for disability awareness raising work.

Saint image, by Rachel Gadsden
Saint image, by Rachel Gadsden

Gadsden’s ground-breaking project – the first time that the public has had the opportunity to contribute to artworks that will form part of the parliament art collection – is sponsored the Speaker’s Art Fund. The scheme involves the artist combining her own art with pieces created by the public in a series of workshops in Westminster Hall. The aims is to create new contemporary images based on mosaics of the UK’s four patron saints, St George, St David, St Andrew and St Patrick, which are in parliament’s central lobby.

Out visit included a “family-friendly” guided tour about the history, architecture and artwork in the Houses of Lords and Commons. The tour, according to my eight-year-old reviewer was “interesting but a bit too long” (I’d have to agree, despite the engaging anecdotes, an hour and 15 minutes with one stop to sit down can be difficult for most primary school pupils).

However, she “liked the information, like hearing that alarm bells sound in some buildings around parliament to call the MPs to vote”. She was loved some of the Tudor portraits after studying the period at school and was intrigued by the Queen’s robing room. Looking around the Commons and Lords has made some rather woolly concepts a little more accessible and real; she spotted the Commons on television recently, commenting that she had stood in the same room as the MPs.

After the tour, we joined workshop members creating everything from pencil drawings to mosaics based on the art they’d seen in parliament. As Gadsden says, “the subject matter is not set in stone and this is above all an ‘imaginative’ project, and participants contributed a range of drawings to which include interpretations, but also creations which express their personal identities.” Now the workshops are completed – participants’ original drawings were photocopied and included within the saints paintings that Gadsden is creating – the artist is working on the pieces and the public and MPs will have the chance to view them next year.

Work in progress in Westminster Hall, Houses of Parliament
Work in progress in Westminster Hall, Houses of Parliament

Gadsden, who has the eye disorder retinoschisis and lost the sight in her left eye this year, explains that her work is “underpinned by the notion of disability, viewed from a positive perspective.” As she says, “I just take every day at a time and concentrate on my inner vision rather than what I see with my eye”.

Gadsden has always championed the belief that disability is not regarded as a barrier to success; in 2007 she became the first contemporary artist in residence at Hampton Court Palace and was commissioned for London 2012 by Unlimited, the arts and disability programme launched for the four-year arts programme, the Cultural Olympiad.

Art workshop in parliament
Art workshop in parliament

The artist adds: “I hope that my artistic practice stands as an example of the importance of the right of freedom of expression: addressing issues relating to disability and, by doing so, contributing to the process of bringing about cultural change. So this commission has given me the opportunity to not only collaborate with the public at large to create the new ‘Saints’ paintings…but also to give a new younger audience the opportunity to visit parliament for the first time, and to have the chance to see the House of Lords and Commons and learn about the procedure of parliament as part of the overall process…it is vital for young people to have the opportunity to understand parliament”.

Given the current debate about increasing social mobility and aspiration, part of the solution is not only making “authority” more accessible – encouraging young people and people with disabilities to visit the, for example, the government’s seat of power, – but inviting people, once they set foot inside, to take part in something as creative and inclusive as an arts workshop.

* Rachel Gadsden tweets at @rachelgadsden
* Information about parliament’s education service is here, including its latest plans to create a dedicated education centre for children and young people.
* Social care provider Dimensions is hosting an accessible Question Time event this week, which I’m involved in, more details here

Images of caring captured on camera

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These candid images of caring are among the photographs in a new exhibition that focuses on the role of carers and disability.

Capturing the bond between disabled children and young adults and their parents, professionals, siblings and friends, tonight’s show from the charity Netbuddy raises awareness of the challenges faced by young disabled people ahead of the UN’s Children’s Day on Wednesday. The photographs are a refreshing take on the images of disability which usually appear in the public domain; although representing the difficulties experienced by the children and young people and their families and carers, they also present disability and caring in a family and social context.

The Faces of Caring exhibition by Netbuddy, an online community for parents, carers and professionals looking after people with special needs, includes photographs of people with complex medical needs and a range of learning disabilities.

* Faces of Caring starts at 6pm today The Hub, Tanner Street, London SE1. For more information, contact Netbuddy

More autistic people should be able to volunteer

David Braunsberg
David Braunsberg
My experience proves the benefits of volunteering for people with autism. I was born in 1959 and diagnosed with autism in 1963, at age four. I was one of Sybil Elgar’s first pupils at her progressive school. She was a pioneer in autism and helped develop my language and communication skills.

I then attended a local primary school in Edinburgh, where my mother and I moved, and a mainstream secondary school in London when we moved back to England in 1972. Art was my strongest subject (I passed several O Levels) and I studied furnishing design and textiles at the London College of Furniture. I got a diploma in art and design. I took more courses after that at a local art college and learned things like etching and print making. My most recent works are computer generated greetings cards (see the website).

Following a traumatic event in 2008, I developed severe depression and anxiety . After some time attending a psychiatric unit, social services support and help from my GP, a social worker suggested volunteering and I was put in touch with Volunteer Centre Camden.

It was through the volunteer centre that I started working at the Holy Cross Centre Trust in July 2011. It is a secular organisation in King’s Cross, London, which supports mental health recovery as well as homeless people, refugees and asylum seekers.

I hadn’t volunteered before although I’d had some experience of work. The place where I worked previously was a company providing unpaid employment for people with mental health issues and was run as a social service. The aim was to manufacture and distribute large volumes of greeting cards to the mass market but I wasn’t happy there. The tasks I was involved in were printing and packing greeting cards and using Photoshop on a computer for designing cards for later use and batch production.

I did not get satisfaction there as I was mostly restricted to printing other people’s designs and this did not allow me to express my own ideas. Their bias was to produce Christmas cards and my inspiration for designs comes from many sources which are irrelevant for Christmas. The repetitive tasks were soul-destroying.

But at the Holy Cross where I am now, my role is to help and encourage people to draw and paint, also to set up and tidy the art materials. I work noon to 3pm. Everyone is kind and friendly and there is a positive buzz to the place. Not only is helping out so satisfying and rewarding, it helps me to gain significantly in confidence and the thrill of feeling respected and valued as part of a team is fantastically liberating. I have made many friends and can see myself thriving there well in the future.

Suitable volunteering should be open to more autistic people as the skills required such as attention to detail, reliability or some special talents are well suited to the autistic trait and may prove to be great assets for the workplace. On their part autistic people can benefit from mixing and socialising with people of different nationalities and backgrounds and feeling respected and valued. To me the regular routines, the structure to the week and the sense of purpose in society are most satisfying.

Autistic people may encounter some difficulties. For example, travelling on public transport, especially long distances, or unintentional and misinterpreted challenging behaviour may cause problems. But with foresight, awareness about autism, guidance and the right support I see no reason why autistic people should not be accepted and be very successful doing voluntary work. I am quite sure that, giving the right conditions, volunteering can be “autism friendly”.

The fact I am high functioning autistic has presented no problems in my volunteering. One of the benefits of working there is that it has a knock-on effect on my closeness, love and affection towards members of the family. I now feel so optimistic about the future. Socialising now comes with ease. I am thrilled with life!

* See more of David’s work on his website

Groundbreaking gigs for artists with attitude

Punk band PKN
Punk band PKN
Shouty, sweary, noisy chaos, big stage personas, a self-proclaimed kick-ass attitude, loud drums, screeching guitars and songs about fighting and sex.

That this is a description of two punk bands currently touring the UK will hardly come as a shock. But the bands confound expectations in other ways; the gigs by Pertti Kurikan Nimipaivat (PKN), from Finland and Zombie Crash, a Brighton heavy metal band, represent the first time that two learning disabled bands will tour the country.

I’ve blogged before about PKN, the band is as likely to write lyrics arguing for respect and equality as it is to sing about avoiding trips to the pedicurist or to complain about residential care homes.

The four date tour, which began on Tuesday, is funded by the Arts Council England and organized by, Constant Flux, an arts organisation that provides opportunities to learning disabled musicians.

Richard Phoenix, who runs Constant Flux, explains: “Often when I talk to people about working with people with learning disabilities in music I encounter the “Aww…. That’s so nice” attitude, which isn’t intrinsically wrong in any way but it seems to me to represent a feeling that people with learning disabilities are only capable of emotionally neutered art, of things that are ‘nice’ and ‘happy’ which from my experience is completely off the mark.

“This tour is a perfect example to present people with something that totally challenges those perceptions, nothing about the bands music or performance is going to be ‘nice’ in any way shape or form. There will be shouting and swearing, with songs about not wanting to live in residential care, demands for respect and equality, songs about fighting, songs about sex.”

Richard says that the musicians’ uncompromising attitudes musical ability will shatter the stereotypical view of what people with learning disabilities can achieve, “this in turn will hopefully help positively affect attitudes toward those with learning disabilities”.

The fact the bands are touring is a vital part of the project, adds Richard. “Touring is something which is such a huge part of what it is to be a musician and being in a band, but for so long it has been extremely difficult to achieve within the learning disabled music scene because it can be such a financial and logistical nightmare.”

Kalle, who supports PKN, sums up the band’s gung-ho attitude: “They’re feeling very excited about this. They are used to playing gigs in tight schedules but never done this tight… but they don’t think about it. They love going abroad, even though some of them don’t really know, or care, where they are globally.”

Ryan, lead guitarist and vocalist with Zombie Crash, offers this response to the tour: “Metal unleashed from the learning disabled community! It means the ultimate activity for any band to put themselves through, to go on tour, to be as active as you possibly can. The fact that we’re doing this in the month of October and Halloween is the perfect timing for us to unleash hell!”

The fact the tour has promoted as a regular event – rather than as simply a “good cause” – should help “create situations where people with learning disabilities at a gig is normalised, where it’s not unusual or exceptional”, says Richard.

On a practical level, the touring musicians have to be supported. “Making this tour viable for learning disabled artists involved ensuring that, as vulnerable adults, the musicians were supported properly,” explains Richard, “so there are 22 of us on the tour, 10 band members and various members of support, some people require one-on-one support, there are members of creative support and musical facilitation, drivers and myself managing the tour.”

Safe, reliable accommodation has been booked in advance each night, unlike in the DIY touring network where you play a gig and don’t necessarily know where you’re staying that night. “The Arts Council was so important in making this whole thing happen…we’ve been able to book everything in advance and ensure that as much risk as possible is removed, also it has taken away the dimension of the tour being a success in a financial sense and has created a situation where it can be judged on it’s artistic merits.”

One interesting byproduct of the tour planning is that it has created debate about how best to promote the gigs. Richard adds: “The main question that is asked is that if the music can stand on its own then why does the element of disability have to come into the equation? There definitely is weight behind this argument, however in discussion with several artists with learning disabilities and parents and carers of artists, the over-riding feeling is that it is more important for these artists to be strong, empowered representatives of a largely under-represented and marginalised section of society.”

• The remaining tour dates are today, October 3, at Sheffield at Heeley Sport and Social Club (with Skiplickers and Amarous Dialogues) and Friday, October 4, in Brighton at The Green Door Store (with Good Throb and The Soft Walls). Both venues are accessible with accessible toilets and prices are £3 (carers free/donation only).

• Listen to more PKN on Soundcloud

Artists re-imagine iconic Star Wars design to launch new search for missing man

David Bailey with his capped stormtrooper helmet for the Art Wars exhibition
David Bailey with his stormtrooper helmet for Art Wars, an exhibition to raise awareness about the disappearance of Tom Moore, brother of Art Wars creator Ben
.

Tom Moore, who went missing in 2003, his family is now renewing the search to find him.
Tom Moore, who went missing in 2003, his family is now renewing the search to find him.

July 17 2003, Ancona, northern Italy. A 31-year-old Englishman withdraws 150 Euros from a cash point. This everyday event just over a decade ago has huge significance for the Moore family because it was the last financial transaction Tom Moore is known to have made; the last sign his parents and siblings have that he was still alive. Tom has not been seen or heard or from since.

Next week, Tom’s brother Ben is renewing the search for his sibling with an art exhibition featuring high profile artists as well as rising stars of the art world. The aim is to raise both awareness and funds to mark the tenth year since Tom’s disappearance. Proceeds from Art Wars, a collection of Star Wars stormtrooper helmets transformed by internationally-renowned artists, will be auctioned for the Missing Tom fund.

A note written by Tom Moore before he went missing.
A note written by Tom Moore before he went missing.

Ben, founder of public art enterprise Art Below, has collaborated with Andrew Ainsworth, creator of the original 1976 stormtrooper helmet, to produce the show. Art Wars launches at the inaugural Strarta Art Fair at the Saatchi Gallery next Wednesday (October 9), with works showcased via a series of billboard posters at Regent’s Park underground, coinciding with Frieze London.

“Stormtrooper helmets are iconic, international, instantly recognisable and timeless,” explains Ben of the medium and the message. “I’d been working with Andrew Ainsworth since 2007 and it was always in my mind to do this show with big artists; I had access to these iconic objects and I knew that there were artists who would like to be involved because it’s something we all grew up with [the Star Wars films]. When I realized it was the 10th anniversary of Tom going missing, I needed to catapult myself into action and do something to get the search for Tom re-energized.”

Artists, all of whom were issued with a helmet cast from the original 1976 moulds, include Damien Hirst, Jake and Dinos Chapman, Paul Fryer, Mat Collishaw and David Bailey. Other participants are English multimedia street artist D*Face, Portuguese artist Joana Vasconcelos, Turner prize nominee Yinka Shonibare, street artist Inkie, Mr.BrainWash, East London’s Alphabet Street creator Ben Eine, BP Portrait Award winner Antony Micallef and upcoming star Oliver Clegg.

The money raised from Art Wars will enable the family to travel in the search and to publicise their efforts to find Tom. Ben also hopes to bring attention to the Missing People charity, which has supported his family. There is also a new website Missing Tom to help locate the now 41-year-old.

'StormOffSki': Stormtrooper head encrusted in Swarowksi crystals by Ben Moore
‘StormOffSki’: Stormtrooper head encrusted in Swarowksi crystals by Ben Moore

As Diana Brown, Ben and Tom’s older sister, writes on the Missing Tom website, the Moores were, and are, a close knit family. “Tom and I growing up, had been as close as it possible to be as brother and sister,” Diana writes. “There was a curious closeness that comes, from having a brother seven years before another two brothers arrived. We were the lucky products of a military family [the sibling’s father was a colonel in the Royal Marines]…We moved house frequently, but were always secure in the knowledge we had loving parents and family all around us.”

Tom was, by all accounts, a genial child (“Tom was blonde, small for his age, good-looking, with a quirky sense of humour, a born actor, musical…with his beaming smile and his floppy fringe. He was thoughtful, kind and never hurt a soul”, writes Diana) but he found it tough at his all-boys school.

Antony Micallef with his 'Peace Maker’ helmet,  for the Art Wars show
Antony Micallef with his ‘Peace Maker’ helmet, for the Art Wars show

After school came a gap year to India where Tom “full of hope and promise”, as Diana writes, grew “disheartened at the huge confusion that India presented to him” and was affected by the drugs he found in Goa. He returned to live with his parents before going to Lancaster University to study theology. There, as Diana found, his mental turmoil was obvious. “He played music, he studied and he went about his daily routines, but he found life very hard. I found my brother, confused and suffering from the onset of mental illness. He left university early and came to live at home.”

The following few years sound like a fragile mixture of travels, doctors and medication, with Tom’s family struggling to find the right balance between supporting their son’s desire for freedom and realising that medication might help bring some stability to his mental health, the “daily dark thoughts” which Diana describes on the website.

A few months before he went missing, Tom had travelled to a shrine in Bosnia, where Ben eventually found him in a nearby town. Ben explains: “When he went away again a few months later, I thought I could find him – but the months started turning into years.”

“The last time I saw Tom, we had game of chess and although I didn’t usually beat him, on this occasion I was winning,” says Ben. “It was a particularly slow game and now I look back at it I realise he wasn’t mentally present, he was quiet and absorbed in other thoughts. I often wonder if I should have kept the pieces how they were, so we can finish the game one day.”

Ben spent the three years following his brother’s disappearance looking for him, visiting well known religious sites across Europe knowing of his brother’s interest in religion, and following various trails (like the cash point transaction). At one point, he says, he was only two weeks behind him, but the demands of work and his own young family meant he eventually had to put the search on hold.

“I still have great hope, confidence and faith that I am going to see Tom again, but we need to get out there and figure out where he is,” says Ben. He wants his brother to know that his aim is to make sure he’s okay, rather than simply dragging him back home against his will. The disappearance of Tom, says Ben, has left a gaping hole in their lives: “I used to rely on Tom for certain things – he was there for me, I wouldn’t go to my dad in a certain situation, or my sister or mother – there things that only he had the remedy for, I miss that.”

As Ben explains in a short video (above and on the Missing Tom site), life as a family of a missing person means struggling with constant uncertainty mixed with optimism: “Searching for Tom is like searching for the holy grail…I see homeless people in the street and wonder if they are on the same journey.” Although a memorial has been held for Tom since he disappeared, his brother refused to
 grieve for his missing sibling: “He is still alive, that is what I believe.”

Tom Moore, who went missing in 2003
Tom Moore, who went missing in 2003

* FInd out more on the Art Wars website and more about the Moore family’s search for Tom on the Missing Tom website.

Social networks and mental health: supportive environment or a stalking ground for cyber-bullies?

Bullying crushes a child’s self esteem and confidence. It can leave a child feeling alone, totally helpless, and with no one to turn to. In their childhood innocence and naivety some even blame themselves for their torment. Many schools now have robust anti bullying policies in the form of bullying charters.

We live in an age where teachers acknowledge widely the emotional needs of children more than ever before. Resources such as SEAL (social and emotional aspects of learning) provide increased emotional support in many schools.

As a consequence bullying has now left many classrooms, but not all. This is commendable but, not only do schools’ attitudes and actions in response to bullying vary considerably, is it enough?

And now in the age social networking sites it has insidiously entered the sanctuary of children’s bedrooms. Running away from the school environment and threatening bullies now leads straight to the bedroom, a once safe haven where a child’s computer suddenly provides no way of escape. Computers are the contemporary child’s toy and some may say the innocence of youth has died as a result. This year’s forthcoming Anti-bullying Week, for example, has a special focus on cyber-bullying.

These issues have been on my mind since the death of 14-year-old Hannah Smith who suffered relentless bullying online. Her death was not a stark reminder of how vulnerable our children are not protected from bullies even in the supposed safety of their own homes. There has been intense speculation and much knee-jerking as a result of her death, but the bottom line is that social media played a part in her suicide. Whatever happened, she was a vulnerable child.

But social networking sites can be so liberating for many providing an outlet for those who lack self confidence in face to face interactions and who might have smaller social networks than usual. Many can make friends and form relationships online that they would otherwise struggle to in school.

These sites can be very helpful, especially for those who lack social contact, or may have poor social skills, agoraphobia etc, but the flip side of the coin is the bullying issue. Reaching an acceptable compromise regarding social networking will not be easy because the genie has now been let out of the box, so to speak.

When experiencing low moods, your reality becomes alien to that of everyone else. I have always advised people to seek help at the earliest opportunity to prevent depression reaching this critical stage. And this is where social sites that support mental health can help.

There is the social site launched by comedian Ruby Wax, for example, Black Dog Tribe, “a place in which like-minded people can find their own ‘tribe’ and share experiences in a supportive online community through forums, blogs, daily news and mental health information”. Another example is Kent and Medway NHS Trust, for example, which is piloting Buddy, an online system that records mood changes. And there are a raft of support-specific online forums linked to various charities and support groups which can make all the difference to vulnerable people.

This is the positive aspect of these sites.

Yet it is too simplistic an argument that social media and networks alone can help prevent depression. An holistic approach can include talking therapies, physical exercise and medication, if appropriate. These therapies can support each other – medication, as I know from personal experience and from my nursing career, has its down side. It can also make your mood fluctuate wildly, become disinhibited and even suicidal. Having easy access to online support can, at times like this, be vital. These issues are brought into sharp focus by the news today that the number of people needing treatment for mental health issues will have increased by more than 2 million by 2030.

We should look closely at both the negatives and positives about social media and networks in relation to mental health – and ignore them at our peril. While it is also wrong to assume that social media alone can push someone towards mental health problems, excessive use of social sites, as is often reported, can itself lead to problems.

Children sitting for hours in front of a screen removes them from the social contact of others that will improve their face to face communication skills and confidence in later life. Effective communication involves eye contact, body language, and gesturing. All ignored when lying in bed hitting a keyboard in silent and lonely surroundings.

Cyber bullies and unpoliced social media sites populated by children (or those posing as children) are not part of a civilised society. We must make it all stop. Now.

One in 200,000: my son and his rare syndrome

Christopher at 17, with Sue
Christopher at 17, with Sue
Most doctors and geneticists have not even heard of the condition that my 21-year old son Christopher has – Pitt Hopkins Syndrome (PTHS).

Christopher was probably the first British person to be diagnosed with Pitt Hopkins Syndrome with the first blood test developed for it. PTHS is a rare neurodevelopmental disorder caused by a spontaneous mutation on the 18th chromosome.

When Christopher was diagnosed the main rare disease charities hadn’t heard of it and only seven children in the world had ever been formally diagnosed with it before the blood test was developed.

Christoper and Sue in July this year at the Olympics anniversary games
Christoper and Sue in July this year at the Olympics anniversary games

Today is the first annual international Pitt Hopkins awareness day (18th September, to reflect the relevance of the 18th chromosome) and the official launch of the UK support group’s website.

Today, nearly 300 families across the globe who are carers for young people with one of the most rare medical conditions in the world will be reaching out to try to find other people who have the same condition. We have produced a short slideshow to help raise the profile and understanding of the condition. I am aware of 33 people in the UK with Pitt Hopkins Syndrome (PTHS). I believe that there could be as many as 250, as the incidence is thought to be 1 in 200,000 to 300,000.

This is a condition so rare that there are no official records of people who have the disease and geneticists who diagnose it are restricted by confidentiality from sharing patient specific information with all but close members of the families.

Yet for parents coping with the shattering realization that their child has a rare condition, sharing experiences, supporting each other and finding ways to help is absolutely essential – that’s why it often falls to the families of patients themselves to find and support each other.

Christopher in his new bed, age 10
Christopher in his new bed, age 10

Christopher, who is 5ft 5in, has severe learning disabilities and in development terms is described as having the same physical and mental abilities as a toddler of 12 to 18 months. When he was diagnosed at almost age 16, I could find no one who knew anyone with PTHS. I put a message on a rare diagnosis website and almost six months later a mother in the States found it and we started our online support group. This was the first ever PTHS group.

When your child has a serious and rare disease, you’re desperate to get as much information as you can – information that can help your child. When literally no one can help – you find the determination to go and seek that information yourself.

I also feel it’s important that I share my positive experiences of how my husband and I have helped Christopher.

All through his life, my husband Brian and I have spent sometimes up to 5 hours a day working with Christopher to help him reach the normal milestones that you’d expect a baby and toddler to reach before age two.

Christopher learned to walk at the age of nine – which was a massive achievement for him. He learned to feed himself with a spoon at 11, and we are working with him getting to standing on his own. We’re trying to toilet train him. He can ascend and descend stairs or steps with supervision. Every small step is such a massive step for him, and for us. I feel it’s more rewarding for us as parents that we’ve had to fight for every small development. We like to say: “Never say never “ for Christopher.

I have met some wonderful families through Christopher. We want to reach everyone who knows a child with PTHS that we can. We want, of course, to reach the parents whose children are undiagnosed. We are using social media a lot to do this. You can reach a lot of people this way but there are still lots of families who don’t use social media, who don’t know how or don’t want to know how or just do not have the time. We are hoping to reach these parents through doctors, health centres, schools, daycares and other parents.

Each parent is doing this locally with their local health providers and raising awareness in local papers if they can.

We are a very small but very determined bunch of parents!

We are also raising awareness around the world to raise funds for research. Audrey, another mother, used her skills as a writer and journalist to find top scientists willing to start new research for us.

Dr David Sweatt, an US-based researcher into the mechanisms underlying learning and memory, has stated: “In essence, knowledge gained from studying the orphan disease PTHS would potentially allow broad understanding of a wide variety of learning and memory disabilities that afflict many families.”

We are very excited about the beginning of real research into finding a therapeutic approach to help our children. There are such exciting advances in genetics and neurogenetics and we are at the start of a long but pioneering journey.

In the UK, members of the International support group are fundraising too. We hope to send about £8,500 over soon towards the research. We are in the process of setting up a small charity – Pitt Hopkins UK.

The Dutch Pitt Hopkins group, founded in 2008, has funding to create a detailed ongoing questionnaire for Pitt Hopkins Syndrome. It is only in Dutch and English at the moment but we hope that it will be translated into other languages, as we make links across the world. This data will be indispensable to research and to everyone’s understanding of PTHS but can only be provided by those we know about and can invite to complete the online questionnaire.

Christopher has sensory therapy at age 12
Christopher has sensory therapy at age 12

I also want to find those other mothers and fathers to tell them that having a child with a rare disease like Pitt Hopkins can be an overwhelmingly positive experience. Christopher is such a happy person with a great sense of humour, despite being non-verbal. I’m intensely proud of him and his achievements. Brian and I get so many more opportunities to celebrate his achievements than we would with a typically developing child.

I feel I have gained a lot from Christopher. I have learned a lot about brain development; I have learned when to say no, when to fight and when to let things go. I have learned to prioritise, I am stronger emotionally and I am more organised. I have learned that the best advocate for your child is you, their mother.

• For more information about Pitt Hopkins Syndrome, please see our website or go to Facebook
• Raise awareness of rare disease by clicking on www.raiseyourhand.co.uk

Breaking taboos about birth

Helen Knowles, "Birth with Orgasm" (image courtesy of the artist and GV Art gallery)
Helen Knowles, “Birth with Orgasm” (image courtesy of the artist and GV Art gallery)

Hyper-real images that question cultural attitudes towards women and childbirth form part of a new exhibition opening today.

The show at the GV Art gallery by Helen Knowles, Private View: Public Birth, features both figurative and abstract images of women “in the transcendental state of birth”; Knowles founded the Birth Rites Collection in 2008, the first collection of contemporary art dedicated to the subject.

Knowles has used screen grabs from YouTube videos to show women at the crowning stage of birth, when the baby’s head beings to emerge. By using footage from social media platforms – films usually reserved for private viewing – Knowles hopes to question the discomfort some audiences have with certain images.

The Birthing of Azheyo Aeoro (Image courtesy of artist and GV Art)
The Birthing of Azheyo Aeoro (Image courtesy of artist and GV Art)

The concept is a refreshing and thought-provoking one. Most public perceptions of new mothers involve images of immaculately groomed famous women whose bodies magically snap back into place and while “beautiful” is a word often used to describe babies, it’s rarely associated with birth itself (and certainly not linked to images of the birth process).

Yet the pieces of work on display in today’s exhibition are intriguing and often ethereal, reflecting notions of female strength.

Knowles has also recently been researching Native American and British contemporary perspectives on public birth. The Birth Rites Collection itself is on permanent public display in the midwifery department, University of Salford and the Royal College of Obstetricians and Gynaecologists in London.

* Private View: Public Birth, a curatorial collaboration between Poppy Bowers and Helen Knowles, runs from 16-22 September at the
 GV Art gallery, Marylebone, London.

Thrill seeker James leads beach accessibility campaign

Beaches are no barrier for James Smith

If you’ve spent any time on a beach this summer, you’ll know that a wheelchair isn’t a common sight on the sand. Unless, that is, the wheelchair belongs to 16-year-old James Smith, above.

James, who has duchenne muscular dystrophy, is, according to his family “a bit of a thrill seeker”. Tomorrow, coinciding with National Paralympic Day, James will steer his high-tech, all-terrain wheelchair through a sandy obstacle course in Tynemouth to raise awareness about beach accessibility.

James Smith in his all-terrain wheelchair in Tynemouth
James Smith in his all-terrain wheelchair in Tynemouth

Saturday’s Longsands Beach Challenge – what organisers say is the first ever beach wheelchair event of its kind – will see disabled and able-bodied participants negotiate a beach-based race circuit.

North Tyneside council has given permission for the event to take place and is supporting the “beaches for all” campaign. The aim is to have power beach chairs available for loan at the beach all year round.

The event is being organised by two companies, Dolphin Lifts and Mobility and Shape Adaptations. Shape director Stephen Smith is James’ father – he was inspired to organise the event by his son.

The free event runs between 10am-4pm on Saturday with races on the hour and prizes for the winners.

* A separate event in London tomorrow marks a year since the Paralympics; artist Rachel Gadsden (whose powerful, awareness-raising work has previously featured on this blog) and artistic director and choreographer Marc Brew present a free new show for National Paralympic Day and Liberty Festival at the Queen Elizabeth Olympic Park. The show is called Cube of Curiosity.

From the Cube of Curiosity performance
Image from the Cube of Curiosity

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Public transport should be for all members of the public

Kevin Preen and Michael Edwards embark on their campaign to raise awareness about travel and learning disability
Kevin Preen and Michael Edwards embark on their campaign to raise awareness about travel and learning disability

Public transport – by definition involves “buses, trains, and other forms of transport that are available to the public, charge set fares, and run on fixed routes”. While the network is meant to be for the use of the general public, a significant section of that population – people with a learning disability – faces challenges when using the system.

While people with a physical disability are often literally unable to get onto vehicles, someone with a learning disability might be physically capable of stepping onto a train, but might find the system as a whole impossible to negotiate.

My sister, for example, likes using buses, trains or Tubes but it would be impossible for her to safely work her way round any of those modes of transport alone; her anxiety would leave her rooted to the spot and she’d be unable to cope with making sense of the numerous changes and confusing timetables..multiple folded leaflets, tiny print, lots of abbreviations..forget it, it’s difficult enough for the rest of us, let alone someone with Fragile X syndrome. So her journeys are accompanied or she’s driven from A to B by us but for other people with learning disabilities, there are not many other options for getting about.

Take Kevin Preen, without public transport, he says he would be “stuck in doors all day”. Kevin, 52, has a learning disability and Perthes’ disease, which led to a hip replacement when he was seven-years-old.

Kevin is supported by and is a peer-advocate for Oxford-based learning disability charity My Life My Choice (he has also represented Oxfordshire’s learning disabled community at the National Forum). He is now spearheading a travel and transport campaign for My Life My Choice during Learning Disability Week, which starts today.

The 52-year-old, who is currently awaiting an Atos assessment for work capacity, adds”: “Without public transport…I could make a few short journeys a week by taxi but I couldn’t afford to do much.”

His awareness-raising mission, known as the End to End trip, involves Kevin and a fellow peer advocate, Michael Edwards, travelling by train from John O’Groats to Lands End to highlight the importance of public transport to learning disabled people amid the cuts.The social exclusion often faced by people with learning disabilities is being exacerbated by the cuts as day services close and public transport becomes even more important in boosting people’s independence.

End To End Infographic

Kevin adds: “It will be a new experience. I’m getting excited about meeting people on the train and raising awareness of how important public transport is to people with learning disabilities”

Kevin and his fellow “transport champion” Michael will stay in B&B’s and hotels along the route with travel passes issued by train firm First Great Western. Accompanied by the charity’s champions coordinator Dan Harris – who will be capturing their journey online – the aim is to record the good and bad aspects of the trip. Dan adds that even if the experience involves getting on the wrong train, “as long as it isn’t going to seriously impact our journey, it would be good to capture that and explore the challenges that led to the mistake”.

Michael, 59, who has very limited vision, epilepsy and a learning disability. He lives with his brother who acts as his carer. Michael helped found the self-help charity and is a trustee of My Life My Choice. He says: “Trains bring me a lot of pleasure. I have been planning my own routes and taking trips as far away as Devon for 15 years. I’ve been watching trains on platforms since 1967…I like trains, I’ve got myself a hobby.”

According to the charity, among the main travel issues faced by the people it supports is the difficulty in being unable to understand timetables and dealing with confusing platform changes. Kevin, for example, once ended up getting on a train heading for Penzance instead of his home area of Oxford because of making a wrong platform change. Another major problem is that of bullying on public transport.

Bus and train drivers are also not always aware of the needs of disabled passengers. Just last month, for example, Jackie, who is also supported by My Life My Choice was travelling independently on a bus. On boarding, the driver asked her to reverse her wheel chair into the disabled space, but didn’t give her time to reverse before moving off. The jolt as he pulled away meant Jackie’s jacket got caught and tore. She pressed the bell well in advance of her stop but the bus driver didn’t stop until she was past where she wanted to get off (he told her she hadn’t pressed the bell well enough in advance).

The End to End trip schedule takes in Glasgow, Manchester, Swansea and Paddington before arriving in Land’s End on Sunday August 25th. In each place, the travel champions will meet local learning disability organisations.

My Life My Choice hopes to publish an easy read document about learning disability and public transport as a result of the End to End campaign and you can follow the trip on Twitter.

* More information about the trip can be found on the charity’s website and you can view a gallery of photographs about the trip here here.