Season’s greetings to everyone – this is me with my sister Raana, thanking everyone who’s collaborated on stories, projects and posts this past year – here’s to more of the same in 2019.
Big thanks also to all of you who’ve supported or helped publicise the crowdfunded book I’m editing, Made Possible, about the talents of people with learning disabilities. It’s
partly inspired by my sister, who has the learning disability fragile X syndrome, and aims to shatter the lazy stereotypes we have about learning disability.
Here’s hoping 2019 will bring more action, instead of just more rhetoric, as I’ve written before, and the people who have to spend the festive break in inpatient care are reunited with their families soon.
Just over a year ago I launched the crowdfunding campaign for Made Possible – and now I’m delighted to say that I’ve just delivered the manuscript to the publisher, Unbound.
And I know I’ve mentioned this before, but I can’t stress it enough – I’m hugely grateful to everyone who has backed Made Possible, or who has shared news about its progress to ensure it gets made.
It still amazes me to think that this project – a collection of essays on success by people with learning disabilities – was fully funded within just six weeks. The speed with which the book hit its funding target proves how much this stereotype-shattering title is needed.
There are 1.5m people with learning disabilities in the UK today but people with learning disabilities aren’t asked to talk about their talent, or share the secret of their success – that’s why I wanted to create this book.
Society barely gives them lip service; they are pitied or patronsised, and rarely heard from in their own words.
Now that the manuscript’s done, I’ll be working with Unbound’s editorial team over the coming months and I’m looking forward to seeing the title take shape. People with learning disabilities face huge inequalities in everything from healthcare to education and employment (not to mention barbaric treatment, locked away in ‘care’ institutions, as reflected in recent media coverage). This book of powerful and entertaining essays by learning disabled high achievers will show an alternative approach to treating and supporting people, and the benefits of that approach.
You can find out more about the book in this Guardian piece.
Isn’t it about time that learning disabled people enjoyed the same access to cultural lives and work as everyone else?
This is one question that Venture Arts (VA) and our speakers will be asking the heritage and cultural sectors at our symposium, Making the Case, at the Grand Hall, Whitworth Art gallery on the 25th May. VA is an organisation that specialises in visual arts in the North West.
“People with autism can do things like other people that don’t have autism in society. Society should be more accepting of people and not assume people can’t do things.” This is what Amber Opka Stother says – Amber (pictured above) chairs the VA steering group, has worked at Manchester Museum and arts centre HOME Manchester and is an ambassador for learning disabled people in the heritage and culture sector.
Our symposium will showcase the experiences of learning disabled people who have formed VA’s Cultural Enrichment Programme, funded through the Heritage Lottery Fund. The programme has seen over 20 people undertake 16 week work placements in some of Manchester’s best known cultural and heritage venues.
On the day we will also be seeing and hearing about other projects from across the country and highlighting areas of best practice.
“Unfortunately, our experience shows that people often don’t feel that big cultural institutions are for them or know how best to welcome people into their buildings. In my view we need to see more learning disabled people working within culture to be able to start to overcome this and make real change happen”, says Amanda Sutton, VA director.
This kind of inclusion makes sense, adds Amanda: “You are going to feel much more comfortable about going into a building, that can otherwise feel quite austere and foreboding, if you can relate to and identify with the people welcoming you and working within the venue.”
In 2015, researchers Lemos and Crane looked at learning disabled people’s access to museums and galleries (pdf). It stated: “Despite longstanding commitments to access, participation, learning, equality and diversity, museums, galleries and arts venues are not currently required by funders or policy makers specifically to promote access for people with intellectual disabilities as they are in relation to other groups…Mainstream arts organisations did not seem always to have a clear framework of good practice for improving access for people with a learning disability. This was perhaps the consequence of widespread uncertainty and anxiety among those with little personal or professional experience of people with learning disabilities.”
So Venture Arts aims to rectify this through working with cultural institutions to introduce learning disabled people to every aspect of their working operations. We reckon that if we can get people in “through the back door”, they will gradually change attitudes and integrate into institutions. Through our work so far, this has indeed happened. People have been back stage, in the conservation rooms, behind the scenes, delivering tours, in museum shops, in the staff room and are now well known by all the staff and visitors alike.
Here’s what Amber thinks about her experiences with VA so far:
At Manchester Museum, I volunteered and worked in the shop and in the postroom and in the vivarium as well. I ended up doing a tour for my friends and family which they really, really enjoyed, it boosted my confidence about speaking to people. It was really nice meeting lots of new people I did things that most people don’t . It’s nice to see the different parts of the museum.
People were, very welcoming and I think I am helping them to learn more about working with people with autism too, maybe like how people communicate or something.
Now I’ve started a new placement at HOME, an arts centre, which I’m really enjoying. We get to go behind the scenes and see how the cinema works which is really interesting and we have worked at the front of house and we get to see some free shows as well and that’s really, really good.
I think it’s important to have people with autism working in these places to see what great skills people have and how it makes a difference to volunteering. They will be more interested in employing people with autism, it will make a big difference.
On a personal level, it has helped me to be more confident and it’s helped me to become more confident in doing other jobs and things. I also work in a school and this experience has influenced how I am with the children, I feel more confident because I had to speak to people and that has lifted my confidence.
Last year I also delivered a workshop about making galleries accessible at a conference called Creative Minds and I loved every minute of it. I probably wouldn’t have been able to do this if I hadn’t worked at the Manchester Museum beforehand. There were a lot of people there too so I was really happy with myself.
I’m really looking forward to the symposium at the Whitworth as well and to interviewing people from museums and galleries. I’m going to interview them about the job and what we do. It will be really important to come to the symposium because you will get to hear about the great work that museums do with people with disabilities.
Even though I’ve got autism I try and do things that people without autism think that people can’t do like drive, I’ve passed my driving test that was a big achievement for me because I’ve always loved cars. People with autism can do things like other people that don’t have autism in society. We need to celebrate difference and make sure that people recognise what great things people with disabilities can do. I get upset sometimes if people don’t understand me, like my driving instructor who didn’t think I could pass my test. It’s important to listen so people can know what message people are trying to get across.
My advice for other museums? People have really great skills and they should give people the chance. People with disabilities can be really good at doing lots of great things and have skills that other people without a disability might not have, which can be valuable in a workplace. For example, people can be more understanding of other people.
It would make me happy to see people with disabilities working in museums because it’s good to see people with great skills doing a good job. If people give them a chance it would be a great place to start when people don’t feel comfortable about going into a museum.
Barriers for learning disabled people in going into a museum can be the staff of a museum because they might be a bit rude towards them or can’t understand if someone has no speech or something. It might not have a ramp or the lift might not be working or someone might be deaf as well so that could be a barrier. Museums should be more accessible to people with disabilities and people should make sure they don’t put jargon and put language that people understand on their walls.
I’m looking forward to the 25th to hear about what people are going to say. I’m looking forward to meeting everyone and to what people have to say about their experiences at the museums and it should be a great day.
I’ve written a piece for the Guardian on what people who have experienced mental health issues, campaigners and mental health sector professionals want from new legislation.
The promise to overhaul the Mental Health Act 1983 is one of the few Conservative party manifesto pledges to survive the election. The decision to reform the act, which appeared in the Queen’s speech in June, means the government is committed to taking steps to overhaul the legislation in the next 12 months.
The 1983 act, which outlines how people can be involuntarily detained and treated in hospital for mental health issues, was amended in 2007. This included introducing the right to an independent advocate while in hospital; and the controversial community treatment orders that were criticised for failing to safeguard patients’ rights.
However, 30 years on, the legislation is regarded as outdated and in need of reform, and as one commentator says in today’s article: “The best way to prevent someone being detained is to prevent them from falling into a crisis in the first place.”
Anxiety and mobility issues mean that 76-year-old Anna Bolton* is usually housebound. But regular calls to a free, confidential helpline for older people have helped her “feel normal”.
Bolton’s mental health deteriorated after she was widowed two years ago. Although she has had some support from local mental health counsellors in her native north-east England, help from Blackpool-based The Silver Line was “invaluable” and more immediate than waiting months for a counselling referral.
The Silver Line, created in 2013 by Esther Rantzen (who also created Childline), is a free, 24-hour, 365-day-a-year helpline offering information and friendship, and signposts people to local organisations for support or social activities.
“There’s still stigma about mental health,” says Bolton. “It’s often easier to speak to a stranger, and nice to know you can call day or night.”
Bolton, who has no family nearby, contacted the helpline after it was mentioned by a receptionist at her GP surgery. She is among the 10,000 people who call the helpline – often referred to as the Childline for older people – every week.
The inaugural event has been sparked by the successful monthly Rock House nights at music venue The Green Door Store.
For the last eight years, the accessible Rock House nights have attracted crowds of up to 100 and feature one non-learning disabled band, alongside up to five learning disabled bands.
Musician Tom Cook and promoter Richard Phoenix, who runs community interest company Constant Flux, launched the monthly band nights eight years as a showcase for the learning disabled musicians they worked with.
It’s hoped the new festival will become an annual fixture in the UK summer festival scene.
* Festival venue The Green Door Store has wheelchair access and wheelchair accessible toilets. For ticket information, see the festival website.
Guest post by Ross Hendry, chief executive of Spurgeons Children’s Charity
New research, which we launch today, paints a picture of far too many young families struggling.
Parents with children under the age of 18 are increasingly anxious, according to Spurgeons’ Parent Report, and many feel that there is little support available.
The research shows half of parents worry their children have low self-esteem or are unhappy (46%) or are being bullied (46%)*; whilst 42% of parents think there is little to no support available from statutory, community or voluntary services to help with family challenges.
And it is many of the most vulnerable who are struggling the most. The ones who cannot or do not have a strong, stable and supportive network of family and friends to turn to. These are the families we work with, day in, day out – their children are among the 4 million living in poverty in the UK today. They are the families for whom support seems very distant and hard to attain just when their needs seem to be increasing.
What’s important is that families get the support they need when they need it. And that’s where charities like ours come in. Spurgeons Children’s Charity is driven by its mission to improve the lives of families and children who are struggling to cope; and to see every child given the chance of a hope filled future.
It is 150 years since we were first founded, but we still work at the heart of communities to improve the life chances of some of the most vulnerable children and families in England. Our focus is supporting families who struggle to support themselves through intervention and help that centres on the child.
The reality is, despite the immense wealth and opportunities for social mobility, life for some families is as tough today as it was when we were first established. Inequality today may look different; we may know more about causes and solutions; we may spend more time talking and writing about it; but it is still an enduring social and economic scar on our society.
We offer a range of different services across the country. For example, our 23 children’s centres support parents with young children to access the help they need, ensuring poverty and deprivation don’t become barriers to a better future. We work with local partners in communities with high levels of deprivation across the UK, supporting parents and their children from pre-natal stage up to the age of five.
When parents need to develop new strategies for dealing with issues; or they feel they maybe aren’t coping as well as they could, our support worker teams are there. Sometimes just to listen; but often to provide practical support and advice too. There are a range of parenting courses; opportunities to stay and play and a chance to meet and talk with other parents.
The chance to access peer to peer support can be invaluable and a life line for many parents who often feel alone. This is true for both mums and dads and we’re keen to recognise the important roles fathers play in their children’s lives. Our Saturdads project, which started in 2009 and worked with 89 dads last year alone, helps fathers develop stronger, positive relationships; build peer support networks; and generally build their confidence as a parent. Too often public funded services are portrayed as places of dependency when the reality is a timely intervention can be the route to flourishing, maturity and development for parents and children.
The Parent Report we publish today gives us an opportunity to compare the views of the wider parent population to our own insight. From parent feedback at our services, through to safeguarding reporting, we are able to draw out comparisons and identity some common themes. What we do know from the work taking place is that it’s not always easy for families to reach out.
All too often, parents are afraid to engage. For whatever reason, whether its concern over how they will be perceived, or feeling like they have somehow failed, we’re often the last place they turn. It’s not uncommon for us to be told by parents that they wished they’d reached out sooner. But the question we need to ask is ‘why aren’t they?’
We need our services, and those offered by others like us – from government, charities, schools and GPs – to be recognised as the safe and reassuring places we believe them to be. Where parents can take their children and be free from judgement at a time in their life when they need it most.
It’s only fair that we all accept some responsibility with this – if parents don’t feel that they can access the support available, what can we do differently to help them on their way? More awareness maybe; more accessibility for the isolated and hard to reach groups most definitely; but maybe it’s more than that.
In a world where they are so many expectations and pressures, living up to a perfect ideal can make a tough job even harder. From our part, we want to ensure there is always someone there to support families – especially those in greatest need – with good information, advice and meaningful support.
About the research All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 1,842 GB parents with children under 18 years of age. Fieldwork was undertaken between 21st – 27 April 2017. The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+). * When asked about the three issues they are most concerned about for their children, either now or in the future.
But that concept is being turned joyfully on its head via a heart-shaped door, a “tunnel of love”, mirrors, multi-media installations and a healthy dose of cheeky humour on London’s Southbank this summer.
The theme of love, as perceived by artists with learning disabilities, is explored in arts organisation Heart n Soul’s latest venture at the Southbank Centre.
I’ve blogged and written articles before about the arts charity’s collaborative, awareness-raising, thought-provoking and frankly bloody good fun events and projects. Its latest move, Tunnel of Love, part of the Southbank’s Festival of Love, gives a conceptual nod and a wink to the fairgrounds of yesteryear – and it is more of the inclusive, stereotype-shattering same stuff that the arts outfit has a reputation for.
According to the London-based organisation, Tunnel of Love “raises a rare opportunity to consider a notion that seems to put society back in the 60’s once again: our attitudes to how people with learning disabilities conduct personal relationships and develop sexual behaviour”.
On Wednesdays until the end of August, Tunnel of Love will also feature live performance from a host of Heart n Soul artists, there are sessions from the likes of artists like singer Tilley Hughes (pictured) and the project includes the chance to catch three-piece band The Fish Police (pictured). For full information, check the Heart n Soul website.
The festival and related events run until the end of August and the charity’s annual club night multi-media extravaganza, the Beautiful Octopus Club will be back at the Royal Festival Hall on Saturday 6 September for the sixth year running.
Today is the last day of Real Bread Maker Week, not too high profile as far as awareness weeks go, but it seemed an opportune moment to share a one minute video of the best real bread maker I know – my sister Raana.
Spliced together with not much time (but a lot of warmth and a fair sprinkling of my sister’s sense of humour), we hope it leaves you with at least one of four things:
1. A clear impression that my talents do not lie in shooting video
2. An understanding that my sister – and her fellow bakers – are damn good at what they do (and why shouldn’t they be?)
3. A smile
4. A hunger for (organic, wholesome, additive-free, made with skill) freshly baked bread
The bread maker week that ends today, run by the food and farming charity Sustain, champions “real” bakers’ “rightful place at the hearts of our local communities” and encourages people bake or buy real bread from local, independent bakeries. Just like my sister’s (she bakes a mean chocolate brownie too; if you’re passing by Ringwood, go taste…).
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 email@example.com Twitter: @thetopeproject or on Facebook.