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
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.
Up Down Boy: Nathan-Bessell as Matty and Heather Williams as Odette (photo: Richard Davenport)“I wanted our sons to see that they could aspire to more than retrieving trolleys from ASDA’s carpark. Thank you…”
This comment, albeit tongue in cheek, from someone who watched the Myrtle Theatre Company’s performance of Up Down Boy, reflects some of the appeal of a play praised for both being honest, amusing and uplifting.
The central character, Matty, is played by Nathan Bessell, the playwright Sue Shield’s son. Shield’s semi-autobiographical story, about the peaks and troughs of bringing up her child, aims to present a real picture of parenting a young person with a learning disability.
Nathan Bessell in Up Down Boy (photo: Richard Davenport)
Originally performed at Bristol’s Tobacco Factory Theatre, Up Down Boy is on national tour from September to November, starting with a relaxed performance at The Shed at the National Theatre tomorrow.
The premise is that Matty’s imminent departure for college sparks mixed emotions in his mother: “You’ve got to stop living on Planet Matty. You’re going away. You’re going to have to live in the real world”
As Shields has said: “The day we were told our son had Down’s syndrome we felt like the bottom had dropped from our world. I have now found from my own experiences that having a child with special needs gets you straight to the back of the queue, and that the special needs are often blatantly ignored. I found then that I had a choice – sink or swim. Stand up and fight for what I believed to be rightfully his or stay at the back of that line and accept what was handed out to him. I think too much of him to let this happen.”
Building relationships with children at risk of care helps keep them at home (pic Includem/Warren Media).
The fate of children in care in Scotland has recently his the headlines; care leavers need more support, say experts, if their life chances are to improve. And today Michael Gove has criticised the care home system in England. But what if some vulnerable children could be prevented from going into care in the first place? In a joint guest post, Daniel* and the support worker who helped him describe how a Scottish community-based alternative to custody and secure care helped him turn his life around.
Daniel*, 21, describes how he was supported by the charity Includem:
“I don’t even know if I would be alive had it not been for Includem. I was drinking all the time and taking drugs, valium, cannabis, ecstasy. I was fighting a lot with my mum and other people and ‘doing turns’ – theft, breaking and entering offences – to get money to spend on food and clothes. Things started to go wrong when I left primary school and when I was about 12.
I had a bad relationship with my mum – we argued all the time – and I was constantly getting thrown out of the house. I had nowhere to go so ended up on the streets. I was always in front of children’s panels and going into temporary care and then home again.
I wasn’t happy and could see that this [drinking and taking drugs] wasn’t the right thing to do but it was what was happening in my life at the time. I felt guilty about what I was doing. I wanted things to change but didn’t now how to make changes. I wanted things to be normal and to have a normal family life.
A social worker referred me to Includem; I worked with a few project workers until I clicked with my project worker who became the person who I felt I could work with. We spoke about goals and how to get there and how I was worthy of a better life.
My worker helped me when things were really bad at home; I could call the helpline at any time and Includem would come out and talk to me and my mum and make it ok for me to stay at home. They would meet with me at times when no one else would be able to – at the weekend, when I needed them I would contact the helpline and they would be there.
Includem helped me stay at home and they helped me get into training and never gave up on me. I respected them and they respected me. I felt hopeful that things could be different. They helped with all sorts of things – planning how to spend money on food and clothes to helping with how to deal with bad situations at home and how to get training to help to get a job.
They were there through everything – even during the night – when I lived at home, when I was homeless and then moving into my own place. They made me think that I was worthwhile.
Before I would just go out and steal things to sell so that I could buy new clothes. I learnt how to save money and how to spend it on food so that I would last. They taught me how to deal with situations with my mum – how to walk away from violent situations and how to stay calm.
Things changed for me because my worker listened and respected me so I trusted and listened to my worker. I got on with her and established a relationship – I started to feel hopeful that things could change. Includem listened and didn’t give up on me, even at the start when I didn’t want to work with them.
Now I live with my daughter and girlfriend and I have my own home. I try hard to be a good dad that my daughter can be proud of – I want her to feel loved and cared for and safe. I want a routine for my family and my daughter and I am trying to find a job.”
Karen McCulloch, Includem project worker, on how she supported Daniel:
“Daniel was referred to Includem at the age of 15 due to his drug and alcohol misuse, anger, aggression, and difficult family relationships. He was a persistent high tariff offender and was facing homelessness due to a chaotic relationship with his mother.
When we meet a young person for the first time we listen to what they have to say and let them know what we can offer. We talk through their lives and identify the areas that aren’t working the way they should and start to look at how these could get better. We identity goals and talk to them about A Better Life – a unique toolkit that we use. We let them know we will meet them on a frequent basis and that we will plan normal social activities where we can meet and talk.
We let them know we put them first and they can trust us – that we want the best for them. Often this is a first for young people who haven’t had proper care in their lives or someone to talk to and look out for them.
We gave Daniel intensive support in managing his anger, including practical support on issues such as how to remove himself from volatile situations. Daniel’s relationship with his mother was difficult, and Includem worked with her to set clear and consistent boundaries within the home.
Daniel and his mother used Includem’s 24 hour helpline, not only at times of crisis but for advice and support. Includem supported Daniel for whilst he was on an electronic tag, a period in secure care for his own safety, and voluntary transitional support into adulthood. Throughout this time, Includem supported and liaised with Daniel’s mother to maintain their relationship.
Daniel didn’t gel with his first project worker so we changed workers to someone that Daniel clicked with. Our model is relationship based therefore we are flexible and will try different workers with different young people for the right relationship to be established.
My first visit to meet Daniel was on a Friday night when Daniel was out with his care home – Daniel had none of his own clothes so I went to his home and picked these up and took them to him. We visited him throughout the weekend and supported him. We talked about ways to change things – and assured Daniel that his life could change with the right support and direction. We put a plan in place that we would work through together in order to meet outcomes.
We started to see real changes. We taught Daniel to listen to his “inner speak” – the voice within that said he deserved a better life and that he could make it happen. When he started to realise that he did deserve better, and how to achieve it, things started to change.
Daniel used the 24/7 helpline regularly as a support – he would phone if he had been thrown out of the house or was in trouble. He would call if he was arguing with his mother – on one occasion an Includem worker would be speaking to Daniel on the phone in one room, another would be speaking to his mother on the phone in another room and a worker would be driving to the house to help calm the situation face to face.
Daniel would forget basic things such as when to eat as sometimes he was living between people’s houses – we would remind him that this was essential and give him practical support on what to eat and how to budget his money. We would plan our contact visits with him around when he would receive money and would take him to the supermarket and show him how to spend the money wisely and make it last.
Daniel moved into his own home under a mainstream tenancy at 19 (he is now 21), and is in a settled relationship and doing well. He has created his own family – he and his girlfriend have a baby, and there is no social work involvement with the family at all. Daniel has accrued no court charges or pending court charges for fouryears. He’s very keen to get a job. His partner is looking to start college and his main aim is to build on his progress and continue to provide a happy and loving environment for his child and partner.
We have a “scaffold of support” in place – a team of three – a project worker, an assistant project worker and a mentor – assigned to each young person so that they can build links and relationships with more than one person. Every service we provide is unique for that young person – we fit our service to them, not the other way round.
Among our successful outcomes is the fact that 90% of young people we worked with in a project with Strathclyde police reduced their violent offending. And with 72% of referrals from the Clackmannanshire area, Includem prevented family or community placement breakdown.
The biggest challenge is usually at the outset when young people are wary of accepting help and opening up about issues. Another challenge is actually meeting up with young people on planned visits at the start– often they don’t turn up for planned meetings and we have to go looking for them.
You learn to be creative in situations like this – finding solutions to challenges such as this and others – and speaking to colleagues for advice and ideas in order to make contact. We constantly refer to our A Better Life toolkit for support and advice.
Includem operates 24 hours a day, 365 days a year. We accept any referrals via social work departments, courts and police. We never turn any vulnerable young person away – no matter what their situation is and how chaotic it may be.
‘Stickability’ is a word we have coined – it’s a key part of our service and is at the heart of what we do – we are persistent, we won’t give up on a young person and we will stick with them at all times during the support we give them.”
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
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. Image from the Cube of Curiosity
Oii My Size, a web-based project to raise awareness about respect in teen relationships
Late night on the estate, London. Two hooded and capped teen boys hang out, waiting for a couple of teen girls. Nervously the girls approach. Tiana used to go out with Stigz, but she’s not sure about this new guy he’s brought along. She thought they were going out to a party, but the boys lead them to this new guy’s place. His parents are out. Tiana fights her instincts to run. The door shuts. The boys start to grab them. The girls resist but they won’t stop. Everything happens so fast…
Thankfully these events are just part of an awareness-raising film for Oii My Size, a youth-led project targeting teens. The Oii My Size project. For those not down with the kids, “my size” means “my kind of girl”. The project is based on a colourful website full of videos and pictures to help teens understand what makes relations between teen boys and girls appropriate and respectful.
The scenario described above is, however, based on a true story and reflects the reality of life for many teen girls. From serious assault like this, to sharing naked pictures of them (sexting) and being spoken to disrespectfully, life can be a minefield for girls when it comes to teen boys. A recent study by the NSPCC reported up to 40 per cent of young people had been involved in sexting, mainly under pressure from other schoolchildren while a conference in Manchester run by the area’s Safeguarding Children Board heard reports from schools that sexting had become a “daily problem” affecting girls as young as 11 years old.
No one knows this better than the group of 12 teen girls who have shaped Oii My Size.
The girls, aged 16, from Pimlico, London, met to socialise until becoming involved in a Peabody Staying Safe campaign. The girls had previously worked with youth arts company Dream Arts to produce a warning video about staying safe around boys and jumped at the chance to spread the message about safe relationships and the dangers of sexting (sending indecent images to an under-18 is illegal). The video, which starred the girls themselves, is now on the Oii My Size site.
All of the girls had some kind of personal experience with the topic – whether affected directly, like the events in the video, or having friends who had to move schools due to sexting, or being exposed to abuse such as a Blackberry Messenger “slags list” – where girls are publicly named and shamed.
The girls were supported by Peabody, Dream Arts and youth-led media social enterprise Mediorite, which I volunteer with. Peabody worked with the girls under its Staying Safe campaign, Dream Arts supported them to work together and provided them with a specialist support worker for two hours each week after school.
As well as tackling issues such as sexting , Oii My Size focuses on disrespectful chat-up lines (or “churpz”) and when to say no in teen relationships. The magazine-style website also has light-hearted videos of teen boys trying out their best (read:worst) churpz on the unimpressed girls, like “Do you work at Subway? Cos you got me on a foot-long” and invites users to “rate my churpz”. This cleverly avoids preaching by demonstrating that the disrespectful churpz just make girls feel embarrassed, intimidated and degraded. In other words –boys- they do not work.
The website also contains a video of Althia Legal-Miller, a doctoral research student at King’s College, London, and an expert in female adolescence and violence. She explains the dangers of sexting, promoting the key message of “trust your instincts” to teenage girls in relationships.
The girls behind the project say they “have chosen this topic as we have realized that we feel intimidated and disrespected due to our gender.” Team member Shanice George explains that “hopefully the website will educate young girls and boys that sexting is illegal, cos we didn’t even know it was illegal until we started the project, and if we didn’t know how were other people to know? Also we wanted to educate boys on how they talk to girls… and we are now working with a domestic violence woman from Peabody and we would like to make girls aware about domestic violence too.”
Lucy Ferguson from Mediorite adds that the girls felt the topic “was a real, urgent issue that just wasn’t being tackled at school, and that no one was tackling it…The project was a success because the girls really challenged themselves to think about the audience.”
The girls not only gained new skills from the project but also won a Silver Arts Award, an Open College Network accreditation in project management via Peabody and a Nominet internet safety award. The website got 2000 hits in 24 hours the day after they won the award, and has been promoted at school assemblies by the girls to over 3000 people.
The project’s audience will undoubtedly grow, as Lucy Ferguson explains: “Most youth groups don’t really explore what someone who doesn’t know them is going to think of their project, they don’t think about how to sell and engage the audience, but these girls really got that. So ‘rate my churpz’ – as a traffic-driver is a really sophisticated idea. It shows they understood the need to engage boys too, and draw people in with a sense of humour, and then engage them with the harder content. Most youth groups are completely unforgiving to the audience. This was a much more sophisticated approach.”
Parenting, at the best of times, can be as difficult as it is rewarding, but what happens if what you take to be your religious values muddy the water when it comes to raising your family? If you’re brought up thinking your religion bans any talk about sex, what do you do when your child asks where babies come from?
This kind of question was at the nub of a recent course for Muslim parents – Islamic Values and the Parenting Puzzle – I reported on. Some of the cultural “learnings” that were mistaken as religious teaching included issues such as not talking about sex or ignoring the child’s opinion about family matters.
The course stems from the work of a very forward thinking family practitioner called Arifa Naeem. Naeem used an established course devised by the charity Family Links, which trains parenting support workers, and added extracts from the Qur’an and the Prophet Mohammad’s sayings.Family Links now employs Naeem
One concern among parents is how to reconcile western values and life with their religious or cultural upbringing. The course, as Naeem says, supports parents towards adopting positive practices consistent with Islamic religious values, helping them be “good Muslim British citizens”.
Although I did the story before the murder of Lee Rigby and the ensuing reports about a rise in Islamaphobia, anyone with any assumptions about Islam and Muslims would do well to listen to the words of the many mothers on the course, with their unanimous aim of raising “good Muslim British citizens” and reconciling their eastern heritage with their western context.
I’d like to thank the women, like Ifat, who shared their family stories and their time:
Ifat Nisa feared her teenage son was hanging out with “the wrong crowd”, drinking, smoking or experimenting with drugs – but when she questioned him, they always argued.
Brought up not to challenge her own parents, Nisa was confused about how to parent an apparently disrespectful teenager. She heard about a parenting course at her mosque in Slough, Berkshire, and despite initially dismissing it – “My reaction was ‘it’s not Islamic'” – when she discovered it was tailored for Muslim parents, decided to try it out.
Nisa recalls: “I was worrying I wasn’t a good parent. I was confused why my son was reacting like he did; the course helped me understand his emotions and feelings.” Nisa learned about empathy and stopped blaming and constantly questioning her son. She credits the course for their strong, healthy relationship now.
Julie Heightley was so worried about her son Thomas suffering an epileptic fit at night that for two years she slept on a camp bed outside his room. The broken sleep and constant supervision of Thomas, who has autism and global developmental delay, was adversely affecting both Julie’s role as a carer and any prospect of independence for her son.
Now, thanks to a discrete network of wireless sensors dotted around the four-bedroom family home just outside Wolverhampton, Julie and Thomas, now five, are enjoying what Julie calls “a new lease of life”. Since the home was kitted out with the assistive technology two years ago, Thomas has been able to safely play and walk about the house independently without needing his mother’s 24-hours-a-day supervision. As well as having a slightly more hands-off approach to her five-year-old, Julie, a lone parent, has more time to spend her two older children who are in their teens.
Julie and Thomas with his older siblings
Assistive – or personalised – technology includes a wide-range of supportive but unobtrusive services and equipment, from personal alarms for elderly people, to seizure monitors and more sophisticated fingerprint recognition systems that allow you to open the door without keys. It can also include computer software, hand held devices or video call systems that increase social interaction and family contact.
As fans of such services and systems point out, the traditional view of this technology is that it involves a medical and prescriptive approach (see the comments on the related VODG blogpost), but the key issue is to bring it to the consumer market, widen its use among the general public and raise awareness about its potential.
As the publication stresses, the social care sector has embraced a huge amount of innovation in assistive technology, using new methods to complement the physical work of support staff. it is transforming lives for the better. But the use of such services, systems and equipment does not enjoy the higher profile of our counterparts in the health sector, despite the fact it is entirely in line with the “person-centred” approach that care providers are working towards and encourages choice, control and independence – social care watchwords.
Today’s report, with its real life stories of how technology is transforming the lives of vulnerable people, aims to change that: “Put simply, technology is part of our modern landscape. We use it for work, leisure, at home and on the move. It makes our lives easier. People with life-long disabilities or age related conditions should share that experience, benefitting from the advantages that tailor-made technological support can bring.”
Young people who have helped transform their neighbourhoods despite are among those being celebrated in today’s Prince’s Trust annual awards.
Amid recent figures showing youth unemployment has nearly hit 1m, it is inspiring to hear how teenagers and young adults are determinedly pursuing work, training or volunteering, despite the kinds of experiences that would lead some to write them off as “hard to reach”.
The trust’s Celebrate Success event honours young people who, supported by one of the trust’s many programmes, have overcome challenges like homelessness or unemployment to make a difference to their communities or to the lives of others.
The community impact award in particular (there are various categories in today’s awards) recognises how young people around the country have breathed new life into a neglected area of a block of flats, launched a support scheme for young carers and turned a disused part of a children’s centre into a a play space. While their projects might not have led all of them into full-time employment, many are on a more secure path to independence.
Young people in Glasgow transformed a disused space in Helenvale Flats (photo: Prince’s Trust)
A group of eight unemployed young people, supported by the Prince’s Trust Get Started programme, revitalised an area in a block of flats in the deprived east end of Glasgow. They created flower beds and benches, built a willow hut for children to play in and sprayed a giant snakes and ladders board on the ground.
The Caring Alone project helps support young carers.
Steven Bland was among the four young carers who created the Liverpool-based Caring Alone Support Service, backed by a cash award from the trust, for a Community Cash Award. They matched the funding with support from other organisations launched the online support support for young carers, offering advice and a forum for information exchange.
A team of young people from Birmingham helped improve Fox Hollies children’s centre .
While participating in the Prince’s Trust Team programme, 10 young people made a disused outdoor space at the Fox Hollies children’s centre in Birmingham into a beach play area. They raised the cash through donations from local businesses and activities including bag packs and car washes.
A stereotype-shattering art project, which uses photography to counter negative mainstream attitudes towards people with Down’s syndrome, is showcasing the last eight years of its work.
Shifting Perspectives Photographic Exhibition 2005 – 2013 is at the South Bank in London until Sunday (31 March) and aims to portray people with the learning disability as individuals, rather than people with a specific syndrome. Carol Boys, chief executive of the Down’s Syndrome Association, believe that the project has shown how people with Down’s syndrome have “the same hopes and dreams as everyone else”.
Down’s syndrome is a genetic condition caused by the presence of an extra chromosome and affects one in every 1,000 babies; there are around 60,000 people with the condition in the UK.
The small group of photographers whose work forms the exhibition all have experience of having had children with Down’s syndrome; the collective came together 10 years ago to create a series of works for Down’s Syndrome Awareness Week (this year’s awareness week ended yesterday).
Among the photographers involved in the ongoing project is Kayte Brimacombe, who documents social issues and whose previous images for the awareness week can be viewed here.
The art and awareness project has toured the UK and Ireland since then, visiting seven different countries. This week’s show reflects the body of work created so far and coincides with a special book marking the work created so far.
A wider range of images can be seen on the project website and admission to the show is free. It’s open from 11am – 6pm until Sunday 31 at the gallery@oxo and Bargehouse.
Daniel*, 21, describes how he was supported by the charity 
Karen McCulloch, Includem project worker, on how she supported Daniel:
