Panto and parity

Happy New Year – and seeing as we’ve just had panto season (oh yes we have – sorry, couldn’t resist) here’s one fairy tale I wish would come true: Once upon a time, in a land far away, people who have a learning disability face don’t face discrimination, prejudice and abuse.

In reality over the last few weeks alone there have been comments from a former UKIP candidate that that mothers carrying foetuses with Downs syndrome or spina bifida should be forced to have abortions and someone from Mensa (the organisation for intelligent people) making what I can only describe as an unintelligent comment describing people with low IQs as “carrots”.

While my fairy tale sounds far fetched, there is at least a happy story emerging in the theatre sector, where venues and theatre groups are trying to be more inclusive of “non-mainstream” audiences.

Although theatre arts have long and well-documented therapeutic links to learning disability, what’s often lacking is understanding on the part of audiences and venues, as has been reported and and as I’ve had the personal misfortune to find out.

Which brings me back to panto, the latest theatrical genre to benefit from the burgeoning growth of the relaxed performance (see my last post on this back in October ).

You’d have thought that the slapstick shows, with their badwy humour, audience participation and rolling-about-it-the-aisles atmosphere is just about as informal a theatre experience as you can get, but even pantos can do with a more understading attitude to audiences that are different. Not only that, but often the noisy environment of panto is a huge challenge for people with sensory issues – you might want to take part in the family experience, but need time out to gather yourself if you feel overwhelmed.

Relaxed performances are aimed at families with children with autism or learning disability. There’s a more relaxed attitude to noise in the auditorium (staff receive training from the National Autistic Society) and before the show, audience members get detailed information and photos or might attend a “familiarisation meeting” in the theatre and make use of a chill-out zone during the performance.

Ambassador Theatre Group (ATG) announced pilot plans for relaxed pantomimes last year. Hopefully ATG will judge the scheme to have been a success and will embark on a relaxed panto performance at one of its West End theatres later this year.

My sister Raana had a great panto experience recently – it wasn’t because of the show itself, or because it was a relaxed performance (it wasn’t) but it because of how she was treated outside the auditorium, not just in it. A “relaxed performer” and understanding and accommodating staff, in fact, made all the difference.

My mum took Raana to see her hero, singer Noel Sullivan (onetime member of reality TV pop group Hear’Say) peform in panto at the Hawth Theatre, Crawley. Raana was desperate to meet him; for 10 years or so she has listened to his songs, watched him on YouTube, seen his shows, always talked about meeting him but never quite plucked up the nerve to try, even after waiting backstage after a show.

She had a stage door opportunity once but bottled out at the last minute – as our teenybop hero turned musical theatre performer emerged from the exit, off Raans scampered down the road, leaving my 60-year-old mother brandishing a mug as a gift and an awkward smile.

But, hey presto, the long-awaited meeting finally happened in December, thanks to some understanding members of staff who accommodated her request (replying promptly and sensitively to my mother’s telephone calls) – and to an understanding performer who gave his time to a painfully shy, awestruck, silent, nervous, overexcited fan just minutes before the curtain went up. Her wish was granted and she was incredibly proud of “her moment”.

My sis surely isn't going to meet her idol in panto? Oh yes she is!
My sis surely isn’t going to meet her idol in panto? Oh yes she is!

This time, despite the palpable anxiety, fidgeting and refusal to eat (nerves) she actually managed to meet him. As usual, my mother was prepared for her daughter to feel so overwhelmed that she’d throw up – despite this being something Raana desperately wanted to do. But it speaks volumes for my sister’s determination and self-possession that she waited patiently to meet him (I know we’re not quite talking about an audience with the Pope but with a man in pancake make up in Crawley – but the fact is she had this dream, and it was fulfilled).

Relaxed performer: panto fan Raana backstage with Aladdin, aka Noel Sullivan.
Relaxed performer: panto fan Raana meets Aladdin, aka Noel Sullivan.

Even weeks later, she is still buzzing from the experience, still mentioning to anyone who’ll listen (actually, even if they don’t listen) that she’s met her idol, still waving around her laminated (yes, for posterity) A4 colour copy of the photo of Noel posing with her.

This was, undoubtedly, her equivalent of Mission to Lars – only not quite as transatlantic, nor epic in scope, arduous in execution nor indeed as hardcore musically (just as well; I’m struggling to picture my mother at a metal gig).

This is what she said immediately afterwards (thanks to my leg man of a mum for taking down her verbatim words afterwards): “I met the biggest star in the world – couldn’t believe it was him! I got two big hugs from him and he posed for two photos with me. I was very happy to meet him. He is still my favourite!” (By the by, she is now planning her next meeting with him, rather than treating this as a one-off miracle, it’s boosted her confidence in the theory that her dreams can come true).

While the theatre in Crawley isn’t part of the relaxed performance scheme, general manager Dave Whatmore says that if someone needs a carer or companion – through having a visual impairment, learning disability or using a wheelchair – ticket concessions are available.

He adds: “Over the years staff have received training courses to raise their awareness of disability in general – although autism awareness as a specific training course hasn’t been offered, we’d certainly consider something for the future if it were available.” The theatre already hosts events for children with learning disabilities, working with Crawley council’s arts development team on organising inclusive events.

So while it’s heartening to see that the official relaxed performance drive is gathering apace, it’s also worth noting the difference that can be made through individual actions, good old fashioned customer communication, courtesy and simple awareness and understanding.

As for the days of people with learning disabilities being frowned upon in mainstream theatre, let’s hope they’re behind us (panto pun fully intended).

* For more information on accessible shows and venues, you can also checkout the Time Out with Netbuddy listings or follow @timeoutnetbuddy on Twitter

The season to be jolly?

Christmas isn't all it's cracked up to be. Pic: The Topé Project (see end of article for info)
Christmas isn’t all it’s cracked up to be. Pic: The Topé Project (see end of article for info)

Hooray, it’s Christmas! Yes, the season to be jolly is upon us once again. But that’s OK because everyone loves Christmas, right? Well, I’m not a fan and I know I won’t be the only one shunning the Christmas cheer, preferring instead to hide away with old Ebenezer Scrooge until the tinsel is put away and a new year begins.

This Christmas will be a difficult time for many people, even more so for those with mental health problems. Our society expects a lot from us at Christmas; shops, TV, advertisements and jolly newsreaders perpetuate the myth that we all have to be happy simply because it’s ‘that time of year’.

Being unwell at Christmas as a result of a mental health problem is rarely spoken about since the expectation is that everyone ought to be enjoying themselves; quaffing wine, eating too much and watching the Eastenders Christmas special. Knowing that people are suicidal or spending Christmas locked up in a psychiatric ward distorts this myth and exposes the reality of what Christmas is like for many of us.

Why aren’t you happy? It’s Christmas!

Telling people to ‘get a grip’ or ‘pull themselves together’ doesn’t help, ever, but especially not at Christmas when people are no doubt already chastising themselves for not being in the Christmas spirit and feeling like they are letting friends/family down. If this was possible there would be no such illness as depression, nor any other mental health problem. Making someone feel guilty over how they’re not feeling helps no one.

Having a mental health problem is a lonely experience and can make you feel like an outsider. It can be difficult to find people who ‘get it’ and are willing to listen, especially at Christmas when most people would rather be thinking about what presents they are going to buy.

It becomes less acceptable for people to speak honestly because we’re all supposed to so happy. People are more likely to keep quiet about how they are feeling at Christmas because of the pressure to be positive and have everything ‘perfect’ for the day itself. This quest for perfection can be dangerous because it is unattainable and doesn’t allow for people to let others know they are struggling.

Between Christmas and the New Year the usual support systems that people rely on aren’t available. Mental health services close during this period and on Christmas Day itself even places like coffee shops are closed. This may seem like a trivial complaint to some but when you rely on little things to help you get through the day – such as being able to go out each day and sit in the local coffee shop – not having the opportunity to do this can make it more difficult to cope with existing mental health problems and the stress of Christmas.

The disruption to regular appointments with a mental health service can make it difficult for people to know where to turn if things get tough over Christmas. Thankfully there are helplines available, such as the Samaritans, which do a fantastic job supporting people over the holidays. Generally people are told to go to A&E if they are struggling with a mental health problem in lieu of other mental health services being closed, but as you can imagine going into that environment when you’re in emotional distress can be inappropriate and frightening.

A great service in Leeds which offers face to face and telephone support for people experiencing a mental health crisis is the Leeds Survivor Led Crisis Service. Set up by people with direct experience of mental ill health they will be open Christmas Day and throughout the holiday season, providing an alternative to A&E and helping prevent hospital admissions with their helpline and crisis house.

It would be great if more of these services were available to people across the country, particularly at Christmas when many have nowhere else to turn.

* Project supports care-leavers at Christmas, writes Saba Salman
“Christmas conjures up thoughts of a big massive dinner, presents, fun… and then I think about so many young people who don’t have that. For me it’s really important that young people, especially the most vulnerable, have a good Christmas.” These are the words of youth worker Shalyce Lawrence, 24, who was in care for 10 years and who, along with several peers, has launched a project to support young care-leavers who are alone at Christmas.

Shalyce and a group of volunteers in their 20s have created the Topé Project, in memory of a 23-year-old care-leaver, Topé, who took his life several years ago. The scheme’s launch event, Christmas in the Crypt, is a Christmas Day celebration in London for 70 care-leavers from across the capital. Organisations supporting the scheme include the charity Crisis and five London councils, and the group has also been gathering donations to fund the drive.

The aim of the scheme is to create an “atmosphere of belonging”, positive memories and to help young people form constructive relationships. Young people in care are not supported by social services after the age of 18, unless they are in education and based on 2011 figures, as the project points out, 44% of 19-year-old care leavers in London were living in independent accommodation.

Shalyce adds: “It doesn’t mean you are going to be affected by suicidal thoughts just because you have been in care, you can be anyone and go through that. Think about how you can support the people around you, so it doesn’t have to happen to you.”

Read more about the project on The Independent website, find out more via email thetopeproject@gmail.com Twitter: @thetopeproject or on Facebook.

Self-harm: the power of talking face to face

Self-harm has always been a taboo subject and in my many years of mental health nursing probably provided more challenges than anything else for me.

It touches at the very core of who we are and how we deal with stress. Our mental strength, or resilience to cope when under pressure, will prevail in many cases but not all.

Recently, new research by the charity YoungMinds suggested that many doctors do not know how to support young people who self-harm. And today comes the news that mental health patients are to be given the right to chose their consultant. As reported today, this will help end what can be a “like it or lump it” service – unlike patients with physical health issues, mental health patients can’t currently chose which psychiatrist they see.

Back to primary care; self-harm is still very much misunderstood by many, and the wider general public. As a mental health nurse, I confess at times to having felt at a loss myself as to how to respond to repeated self harm behaviours. You question your own approach if the problem remains despite intense nursing intervention.

But given that 10 per cent of 15 to 16 year olds are thought to have self-harmed, usually by cutting themselves, if GPs are offering a lacklustre response to the issue (not referring for counselling or for more specific mental health support), this is woefully inadequate.

The mental health charity Mind, suggests that if your GP doesn’t help, you contact the Patient Advice and Liaison Services – and you have a right to change your GP. Mind has some useful practical information on where to get help.

I have worked with some excellent professionals. However, I have also seen others who are in a privileged position to help but who try to look the other way. Or dismiss this as attention seeking behaviour.

In a profession known for its primary focus on the treatment of physical diseases, being presented with a self-harming patient provides an emotional litmus test for many GPs. Why do they get this so wrong sometimes?

Although I don’t want to generalize, I believe that some view this behaviour with frustration and a sense of hopelessness. By this I mean some medical professionals might not feel confident of their own training or understanding to be in a position to deal with things effectively.

Some GPs are too dismissive or refer to mental health services in the knowledge that more specialised knowledge will be available to plan appropriate treatment. Or they automatically reach for the prescription pad to prescribe medication without really asking themselves if a psychological approach would be the more helpful first option.

And yet all too often, just a listening ear will help, to allow the person to “offload” within the surgery. This is where the therapeutic relationship between the GP and patient is pivotal to treatment and recovery.

The power of talking openly about concerns face to face cannot be underestimated. A prescription for anti-depressants may be helpful in the long term but we should not rule out even a basic “talking and listening” opportunity as a first option (given GP’s have to stick to set consultation slots, I can see why this might seem an impossible idea – but an approach that encourages people to talk is the right one).

If a person with low self esteem tells the GP they are a “bad person” or “unloved”, the GP can use a simple cognitive behavioural approach of questioning the evidence to support this there and then, of which there is usually very little. And stress to the person that a thought is just a thought, not a fact. Simple but effective initial intervention to encourage someone to question their own negative thought processes.

So what to do?

Going back to my opening thoughts, while professionally I’ve found self-harming behavior extremely challenging, one thing I’ve never doubted is my empathy to try to look beyond the physical act of self harm to try to identify its underlining cause.

A behaviour as challenging as self-harm can distract you from seeing the person behind the behavior; what is the emotional conflict driving this kind of behaviour. People can change self-harming behaviours. Being positive and maintaining hope is the starting point of any intervention – and that goes for the professional as well as the individual.

Bricks and mobility: buildings and disability history

Carved stone hands reading braille, on the exterior of the former Royal School for the Indigent Blind, Hardman Street, Liverpool. The Grade II listed school was built in 1850 (pic: English Heritage)
A gap in a church wall speaks volumes about the history of disability in England; lepers’ squints allowed people with leprosy to see the pulpit and hear the service through a small chink in the stonework, without coming into contact with the congregation.

Images of churches with lepers’ squints are among hundreds included in a web-based project launched today by English Heritage. The Disability in Time and Place resource encourages the public to understand changing social attitudes to disability via England’s architecture and shows the influence of disability on the built environment.

Eleanor House, Buckinghamshire, the Epilepsy Society, opening ceremony 1896 (pic: Epilepsy Society)

As Rosie Sherrington, policy adviser at English Heritage says of Disability in Time and Place: “In essence we can track disabled in and out of the community and back in again by looking at the range of buildings they inhabited.”

The image-led project features institutions and landmarks, among them the Le Court Leonard Cheshire Home, often taken as the first meeting place of the disability rights movement where Paul Hunt began campaigning with other residents in care. The pictures are from English Heritage’s archive and also draw on historical images lent by the charity’s partner organisations.

Disability in Time and Place is being launched at the Graeae Theatre, Hackney (among the country’s leading fully accessible theatres) this afternoon with speakers including Tara Flood, ex-paralympian and director of ALLFIE (the Alliance for Inclusive Education), and architect and access expert Dr David Bonnett, whose pioneering work includes the refurbishment of the Royal Festival Hall.

Guild of the Poor Brave Things, Braggs Lane, Bristol (pic: Brave and Poor Ltd)

Among the places featured is the Guild of Brave Poor Things in Bristol (above), the first meeting places for disabled self-help groups. The visual history also includes the Liverpool School for Indigent Blind, opened in 1791 by Edward Rushton, who was blind. Rushton’s school was the first in Britain that aimed to give people the skills to be more independent.

Other sites featured are churches designed for deaf congregations such as St Bede’s Church in Clapham and St Saviour’s in Acton, both in London (the latter is still used as a deaf church). They have dual pulpits, one for the chaplain and one for the interpreter, as well as bright lighting and raked seating to boost visibility.

English Heritage’s web resource is divided into six sections, each taking a specific historical period – the Tudors or the early 20th century, for example – and looks at the building types associated with it.

Sherrington adds: “In the medieval period we have the idea that disability was a direct consequence of mankind’s sin, and therefore a religious matter. However disability as a result of disease such as leprosy was widespread, and an ordinary part of everyday life. It was not understood in the same way as we see it today.”

Moving onto Tudor times, she says, much of the care provided by monasteries and the church was destroyed during the dissolution, having disastrous consequences on the lives of disabled people. Paradoxically, Henry VIIIs “fools” were people with learning disabilities paid to entertain the court. It was a privileged role and they were thought to have divine wisdom.

“The 18th century saw the idea of disability being a matter of physicality rather than morality,” according to Sherrington, “and providing for the disabled became a matter of civic pride. As such many private asylums and enormous hospitals for the war disabled (like the Chelsea Pensioners) were built.”

With the rise of asylums and workhouses, disabled people were hidden away (although Sherrington adds “ this was though of as a positive move enabling disabled people to receive the ‘treatment’ they needed”). With the 20th century came the attitude that many people had incurable conditions (Sherrington draws our attention to the rise of eugenics “and the perceived need to separate those who were ‘healthy’ from those believed to be ‘inferior’”). But then two World Wars resulted in the notion of “heroic disabled” and the emergence of memorial villages and specialist rehabilitation hospitals.

According to Baroness Andrews, who chairs English Heritage, the project “is a history of the nation’s buildings and of a significant proportion of our population which, until now, has gone unexamined and untold. It is the part of the history of every town and city, with the schools, chapels and hospitals which surround us all each day but it has remained invisible and silent.”

English Heritage worked with a disability history steering group which included disabled employees, disability history academics including Jan Walmsley from the Open University’s Social History of Learning Disability Group and Dr Julie Anderson from the University of Kent who specialises in war disability. Partners included ALLFIE (the Alliance for Inclusive Education). Other sources of advice, information and images include the Greater Manchester Coalition of Disabled People, Disability History Month, the Centre for Disability Studies in Leeds, Leonard Cheshire, the Epilepsy Society, New College Worcester. All the content has been translated into British sign language videos by deaf interpreters.

* English Heritage has also updated its, Easy Access to Historic Buildings, available to download.

Learning disability charity needs your vote in e-card competition

Okay, so it isn’t yet December, but can you really look at this this frosty little fellow and fail to feel even a tiny bit festive? He’s just one artistic entry in the charity Netbuddy’s Christmas e-card competition

The charity, which runs an award-winning website and online community for parents, carers and learning disability professionals, invites people to vote via its Facebook site for the design they think should be its e-card for 2012, and the image on Netbuddy’s Facebook site withe most “likes”, wins. All the artwork has been created by children and people with learning disabilities.

The deadline for voting for the seasonal greeting e-card is 10 December and the winning artist will receive a chocolate hamper. Here are some of the other entries – click here to see them all and vote for your favourite:

Disability history: “I quite clearly remember being tied to the cot sides”

A performance by secondary school pupils based on the stories of disabled people from post-war Britain to modern day (photo: Jon Legge/University of Leeds)

“I quite clearly remember being tied to the cot sides,” recalls Florence, now in her 70s, of the childhood she spent in hospital. “Literally, two wrists tied to the cot sides with cotton tape so as I couldn’t get up and I couldn’t sit up because they – the doctors – had decided that if there’s something wrong with your back, you have to lie prone.”

Florence’s memories are among those featured in a project that encourages schools to create theatrical performances based on real stories of disability from people born in the 1940s, 60s and 80s. The Changing Lives, Changing Times project involved workshops at three Leeds schools over five weeks last summer and led to the development of teaching packs. These help teachers run awareness-raising workshops about disability and are being sent out to UK schools by the end of the year.

The drive coincides with Disability History Month, which starts today.

The rest of my piece in the Guardian’s social care pages is here, and I’m devoting the remainder of this post to extracts from the stories of Florence and Dan, both born in the 1940s, Poppy, born in the 1960s, and Holly, born in the 1980s, reflecting the contrasting experiences of disabled people in different eras.

Florence was born in the late 1940s, the daughter of a single parent, but when doctors diagnosed that she would never walk, her birth mother left her. Florence attended mainstream schools throughout the 1950s. She left school and entered her first paid job in the mid 1960s as a telephonist and clerk. Her second job was as a typist. Florence is a trained social worker. She is single, she has no children, she drives her own car:

“There were all sorts of problems of having a child that wasn’t going to be able to get do things normally. The children’s home really wasn’t ideal and they decided that they would foster me out because there were too many kids running about in the children’s home and because I wasn’t mobile I was getting picked on, getting hit, getting spat at by the other children.

I then went to foster parents who, although they knew that I wasn’t going to be able to walk, said: “Oh yeah, we’ll manage that fine”. And they didn’t, and after two months I was back in the children’s home. The children’s home said “no, we can’t cope with her here because she’s not mobile” so I went back into hospital, where I didn’t really need to be but because there was nowhere else suitable and they couldn’t find another foster placement, so that’s where I went.

My mother still was saying, “I don’t want anything to do with this child’, which was really difficult for her because any time that I needed any surgery or any intervention they had to get hold of her, and every time I needed something obviously it brought it back to her that I wasn’t living with her. So that must have been really difficult for her.

A relative of a child that was in the next bed to me for quite a while came in and after a couple of times coming in she realised that there wasn’t anybody visiting me, because nobody from the children’s home came, my mother didn’t come, so nobody came. So she said; “Well could I still continue to visit after my niece goes home?”. And they [hospital staff] said: “Yeah if you want to”. You know: Why would you want to do this? And she said: “I just seem to have got on with her and she’s got a really nice smile”. And so after a couple of visits she’d sort of said to the nursing staff “Is there anything else I can do?” And the nursing staff had obviously said, “Well, you know, it’d be nice if you maybe spoke to the social worker”, and so they set up an appointment with the social worker – and I ended up going out to them. Initially short-term fostering and then it turned out as adoption eventually. So that was really just luck and chance.

I had absolutely no idea where I was going because there was no proprietary work done – no photograph of the house, nothing. They didn’t do things like that then, they just assumed that a child would cope with it, you know. So we ended up at this house and there were like two steps at the front door. Although they knew I couldn’t walk it just didn’t register. I suppose because they felt I could stand up, I could walk, and the two are not at all related, but to people that have not known disability … why would you think about it?

I don’t think my adoptive brother was really consulted that much about it and I think he just took the attitude, “well, I’m an adult, it’ll not bother me”. And so, because there was such a big gap there really wasn’t a very close bonding at all and there still isn’t, but there is with his children, so that’s okay.

Apparently one day when we were in the town shopping … my adoptive mother saw my other, saw my natural mother coming in the door … … and we turned and walked away. Now I have not even got any memory of what my natural mother looks like. I have nothing.”

Dan, born in the 1940s:

“I can remember, I should imagine possibly 7 or 8, being in and out of hospital and, it was suggested by the medical profession that I should go to a special school, and I always remember it was a real big old type of building and we used to be taken on a… on a blue single decker bus and this school was um, it… it was more about doing this like making raffia baskets and playing with you know, clay and they… they had gardens at the back and used to let us potter about, digging things up or planting things, but it didn’t seem to be you know, really academic type of thing, it was all about… and I always thought I was the least disabled person there to be honest.

You were sort of cotton-woolled, you went in and there was always lots of people to help you, you know go to your classroom, help you if you needed it, sitting down, people brought things to you all the time to your desk or whatever, and um, it was… you knew you was different and you had this all the time, you knew that you were, you was different from anybody else, those outside, your friends at ordinary school, you needed this particular facility because you had a disability, and it was always the physical disability that was sort of, you know, important. That’s why I’m sure you know, it was as though you were limited, your mental capacity was limited.”

Poppy, born in the 1960s, went to residential special school at the age of four until she was 16. The school became her social world and she remembers feeling bored and lonely at home during the summer holidays. Her ability to move around independently was limited by an inaccessible environment. At school there was a strict institutional regime of normalisation including intensive physio and speech therapy (“the more dependent you were, the less privileges you got”) and there was corporal punishment for non-compliance and allegations of sexual abuse from some children: “I knew it wasn’t right, but there was no one to tell”. Poppy also saw changes towards a more enlightened attitude in the late 1970’s and whilst academic expectations for the pupils were not high she was able to gain enough basic qualifications to enrol at a further education college. Here is Poppy’s story:

“My first memory of school was crawling down the corridor after my mum and dad had gone, and I was in tears, because I didn’t really understand what was happening. I never walked, I was on the floor, I always crawled, so I crawled down the corridor. So the headmistress picked me up, shouted at me and put me on my feet. They had bars on the walls, and she said ‘we don’t crawl here, we walk’ and I had to walk and I’ll never forget that. It was pretty traumatic at the time.

The school was very institutionalised, and you got up at 7 every day, including weekends, which I wasn’t too happy about, and they had set meals, you had set bath times, set bed times, the day completely structured. Luckily we did have lessons, they did try to educate you, as much as they though was possible, but I still think we had a substandard education. It wasn’t very tasking.

I remember one child getting hit around the head, and I knew it wasn’t right, but I was too scared to tell anyone.

A new headmistress came, and she had very new ideas about disabled children, and I think she had higher expectations of us, and she taught us about classical music, how to appreciate the arts, I think we responded to that quite well. We would go to the theatre or we would go on days out to the Tate Gallery.

The aim was to get us as independent as possible, but not independent to use a wheelchair to get about; you must walk, you must talk. I had speech therapy, although you couldn’t tell now. I had speech therapy, and , I had physiotherapy, and we had to dress ourselves, we had to feed ourselves, and some people weren’t able to do that; the more dependent you were, the less privileges you got. So because I could get dressed on my own, I could sneak a few minutes in bed longer in the morning, I had more freedom, you know, I could do as much as anyone, I could come and go as I pleased.

I think young people have a lot of pressure today, I think it’s harder, I know one lad, he’s at a non-disabled school and he finds it really hard to kind of be part of the whole system, because he is different, he knows he is different and in some ways, his school mates treat him differently and he hates that. I didn’t get that at school, we were all the same.

College was like a right of passage. It was where I learnt to become who I am now. The way I learnt to become, I think, an independent adult, not in the sense of learning to walk, dress and all that stuff but to think for myself, to have the choices that I wanted, and to be able to make those choices. Also it made the selection process more powerful because you knew you’d been selected because of your intelligence, and not someone patting you on the head.

I majored in English and my minor was in Sociology and we studied ethnicity, racism, and sexism, and different kinds of religions and beliefs, and age discrimination and class, nothing about disability, so at that point I wasn’t even aware I had a political identity as a disabled person.”

Holly was born, several months prematurely, in the 1980s. She was not expected to live for more than a few days and doctors advised her parents not to bond with her. Her parents separated after her impairment was diagnosed, so Holly lived with her mother, who gave up her career, and a step-brother from a previous marriage. Her mother re- married. Holly was sent to a residential special school when she was two-years-old, and stayed there until she was 18. When she left school, at the age of 18, Holly also left home, partly because she had become more distant from her parents, and because she had experienced some domestic violence and abuse. She went to a mainstream college to study dance, but never finished due to back problems. Holly lives alone in a council flat. She works as a volunteer for a local disability organization and a charity that supports children who have been abused. Holly has aspirations to do a paid job and marry her boyfriend:

“Some people are completely ignorant, not through malice but they are ignorant when it comes to disability. Somebody’s already formed in their own head what a disability means and if you kind of break their train of thought about what a disability is, you kind of completely shock them.

I think it’s changing very, very slowly but I don’t think it’s changing at the pace that it should be. I think there’s still an awful lot of undertone, tokenism, you know, people still get patronised when they’ve got a disability. I actually find the worst people for it are teenage girls – like girls in between the ages of let’s say fifteen to early twenties. I don’t know whether it’s because you know, I don’t quite understand, but I’ve experienced really quite bad attitudes with that kind of age group.

I still find it absolutely disgusting that women that need to access places like women’s refuges are turned away on the basis of their disability. I think people are still like –what do you mean domestic violence? Well, you’re disabled. Because they either think that you – that you are completely spoilt and wrapped up in cotton wool as a child, and obviously you can’t experience domestic violence from a partner because disabled people don’t have sex. I find the – worst thing a parent can do is pull a child away when they want to know why that lady is in a wheelchair. I wish to god parents would just let their children ask. And then maybe we could start educating from that age.”

Taken from Changing Lives, Changing Times, a Leeds University-led project and published with thanks to Dr Sonali Shah.

How back office benchmarking can improve efficiency

When social housing provider One Vision Housing (OVH) reduced its total management costs by £2.8m in five years, it was partly due to the fact it had been benchmarking its back office functions.

The Merseyside-based group spends less now on what it terms its regularly recurring front and back office management than it did in 2006, when it was formed after a housing stock transfer from Sefton council. As a large transfer organisation with a very tight business plan, benchmarking to encourage efficiency was key, says operational director of finance Gaynor Robinson. However, Robinson emphasises that “it’s not just about identifying savings, it is about improving business processes and prioritising your resources … it’s about quality and governance”. Read the rest of my piece on the Guardian’s voluntary sector network pages.

Prevention, partnership, proofing against the future

With less than six months to go before councils adopt responsibility for public health from the NHS in April 2013, much depends on successful collaboration between cross-sector agencies.

As the date approaches, the latest Guardian public health seminar gathered together an expert panel and audience of 50 stakeholders to discuss the changeover. The debate focused on partnership between the public and private sectors and barriers to integration. Read the rest of my piece on the Guardian website.

Photo project promotes Roma and new migrant culture

An image from the Roma and new migrants photo project

The intriguing photographs here are from those in a new exhibition created by children from Roma, Slovak and Polish communities in east London,

The works, created using pinhole photography, have been produced by 12 young people aged eight to 14 from Roma or new migrant backgrounds. The show is part of a Children’s Society project, the Roundabout Arts Project, and the images reflect the children’s views of their heritage and the summer of Olympic sport. The young people from Newham created 20 pinhole photographs and an animated film (below).

An Olympic-related image from the Roundabout Project exhibition

The project, a partnership between the Children’s Society New Londoners Roma/New Migrants Project, art group Click Academy, aims to promote a greater understanding of European migrants and Roma culture, showing the communities’ contribution to London life.

Artist Marta Kotlarska’s Click Academy uses pinhole photography to encourage social change (with the aim of showing it is possible to “make something out of nothing” and at little cost). As Kotlarska has blogged on the Children’s Society website: “Our hopes for the children to learn the realities of the creative process and have the opportunity to express their creativity were realised. Roma children often don’t have access to the arts because of discrimination and social exclusion and we wanted to change this.”

* The Roundabout Arts Project exhibition is open for three weeks at The Hub, 123 Star Lane, London, E16 4PZ, 9am-8pm from Friday 19 October to Thursday 8 November.

Saba Salman on social affairs