Service user, client, customer, patient, ex-offender, offender, prisoner, criminal, A1726AY, number, addict, junkie, coke head, alcoholic, drunk, referral, claimant, benefit scrounger, benefit cheat, resident, occupant, mentally ill, manic depressive, nutter, blind, blind idiot, partially sighted, visually impaired, four eyes, disabled, Spastic, Dyslexic, problem child, brain dead, stupid, thick, naughty.
These are just a few labels that have been given to me over last 30 years by many people and some professionals. Well I am Darren yes I am a person like yourselves, just with few added extras, also I am a citizen, citizen of Stoke-on-Trent an Expert citizen with lots of lived experience in the field off multiple complex needs. I don’t remember much about my childhood! However I do remember been given these labels and still to this day at 42 years old aim still been labelled!! I was told at such an early age that I was stupid thick naughty and I would never amount to nothing. I struggle to understand why no one would ever think this would affect me later on in life. The labels given to me over many years have taken away my personal identity and I have struggled to know who I am and how I fit into what some professionals would call mainstream society, these barriers I face on a day-to-day basis and it’s really difficult to understand who I’m meant to be in society.
One my first childhood memories is back in late 70’s… I was about six years old, I remember a dark green Rover car pulled up outside my mum’s house, a tall man got out the car, dressed in light gray suit green over coat brown shoes smelling of cigarettes and extra strong mints, I could even tell you what was playing on the radio, on a memorable September day! I was pushed into the back of the car and then we drove off, I was told that I was going away for short while to a special needs school in Coventry – to stop crying and shut up -naughty blind spastic! This was my first experience with someone who was meant to be supporting me!
Oh by the way, the short time was 11 years from then… I found myself mixed up in the world off addiction and crime for almost 20 years. I went to prison in 2010 for conspiracy to supply class A drugs. In prison there was no real support for me with my disabilities, however I found myself fitting in to the regime perfectly… yes, you could say I was the perfect model prisoner. I was released from prison December 2012, I really didn’t know what I was going to do with myself!
Well let’s not look back at the past too much, it’s about looking forward to the future and all of us coming together and supporting each other to make this city of ours, a much better place for everyone to live and get the right support they need to carry on their journey to recovery and more fulfilled lives. I was invited to attend focus group in 2013 where I was told about a great new amazing vision that someone like myself, a real person living with multiple complex needs, as a voice of real lived experience, to help others in this city (of Stoke).
Since becoming an expert citizen my life has become so much better, and I have achieved so much over the last 18 months – an NVQ level 3 Advice and Guidance, which to me, is the biggest achievement in my life apart from my children. Also I enrolled on an ICT level 2 Functional Skills, also completed my brighter futures foundation in support work and for the first time in my life I am looking forward to the future. Now I’ve been given the opportunity to share my story and experiences to help promote service change in the city.
Wow what a vision… that I Darren, Expert Citizen with a real opportunity to be able to give something back to the community off Stoke-on-Trent which for many years I helped to destroy.
I am one of the lucky ones who got the right support at the right time on my release from prison, support that has been tailor-made for myself, to me this is massively important. However I keep asking myself the question – where was this support all them years ago? We all need to remember we all experts in our own lives and not one cap fits all and we all need to remember to listen to the voices of our own expert citizens to help and make Stoke-on-Trent the lead city in supporting people with multiple complex needs. All of us today have the passion, the vision, the voice, the lived experience, to make a difference. I would like to ask you this question in your eyes – Who Am I Now Today?
Big Music Project Hub champion Sean Kinsley on what inspires him and why his work’s the real deal…
Rap musician Sean, 24, volunteers at The Big Music Project hub, The Street, where he organises gigs workshops and events. We caught up with Sean at The Big Music Project Live event in London.
As a Big Music Project champion, Sean stages events that use music to glue the community together.
“I get a lot out of The Big Music Project,” he says. “I like to help people through issues and I also like music and to be able to connect them is amazing.”
Scarborough-based The Street, holds regular gigs, runs recording sessions, workshops and a production course for young musicians and plans to add music video directing, fashion design and drama. It put on an event with Oxjam Music Festival, this Autumn, which spanned genres like hip hop, punk, acoustic, pop and grunge.
One thing Sean’s especially proud of helping is new recording artists find their feet.
“We’ve got some people whose self-esteem is really low,” he explains. “Getting them to do things like record a simple chorus, even if there’s nobody there, they find it very nerve-wracking. So I eke them into it in the studio by building their confidence.”
One person he’s helped recently played a gig at Moj
o’s Music Café in Scarborough. “That’s a pretty big thing because they’ve gone from being scared to even sing a note in front of people to doing gigs for 60 people. It was amazing.”
With his own music, authenticity is everything. “I rap about my life and the things that inspire me.” Shunning mainstream hip-hop fodder like girls, guns and gangsters, Sean raps about real people’s struggles. “I don’t rap about girls and clubbing because that would be lying. I’m in a committed relationship. I’m just a normal guy who feels for people who have it rougher than me. That’s what I write about.”
One such person is a friend who felt pushed out by her mother’
s new boyfriend and ran away from home and lived rough. “She said things like that change you because people look at you and judge you. They don’t ask your story, but instantly think you’re a druggy, an alcoholic or a waste of space. I wrote a song about that.
Besides building confidence in new artists, Sean also uses music to help other young people cope with personal issues such as bullying.
He says The Big Music Project has come at the right time. “More people want to be involved in the music industry and not just on stage. More want to work backstage. You wouldn’t have the artist if you didn’t have the people helping out back stage, so it’s an amazing thing to see.”
At The Big Music Live London Sean spoke to the Big Lottery Fund about the live event, volunteering and his busy schedule.
The last of the four national Big Music Project Live events is in Belfast this Saturday. They have attracted thousands of young people and major artists. But it doesn’t stop there. The Big Music Project is also running an internship and work-experience programme, including online listings and associated careers advice called The Big Music Project On Track Scheme for young people who want a career in music.
Community groups are so busy doing their day-to-day work that they have little time or money left for their staff and trustees to learn new skills or focus on long-term goals, grant holders have told us.
So we’ve decided to offer extra money to organisations who are applying to our Reaching Communities programme to help them develop their skills, knowledge and confidence.
This money is available for all stage two applicants to Reaching Communities and stage three applicants to Reaching Communities buildings. You can ask for up to 10 per cent of the grant you’re applying for – up to £15,000. We’ll send you full details when we invite you to apply.
You don’t have to use this money just on staff involved in your Reaching Communities project. We want there to be a lasting benefit to your organisation, so we’d like you to use the money to look at your organisation as a whole. Can you think of areas of your work that could be a whole lot better with some extra support or training?
If you are just starting to plan your project, or you’re filling out a stage one form, you don’t need to worry about this yet. The money will be added to your grant if your stage two application is successful.
If you are completing a stage two application now, find out more by downloading the Building Capabilities guidance notes.
Find out more about our approach to supporting organisations to increase skills and confidence.
It struck me one day – why should artists that have a disability or condition, such as Down syndrome be treated any differently to other artists? We all have our eccentricities, it’s what makes us unique, especially creatively minded souls – they thrive on being different! Why therefore, should a piece of work created by an individual with Down syndrome be given any less, in regards to respect, an honest critique or it’s worth…. The Big Lottery Fund agreed with me and my project Heart & Sold was awarded £10,000 for a special event.
In 2007 we had a son, Max, born with Down syndrome. I spent the first two years of his life in part time educational counselling courses. This eventually led to an MA in Art Psychotherapy of which the first academic year brought all my demons to the surface, through necessary self-study. As hard as this was, it allowed me to quickly come to terms with my son’s condition. I deferred due to the fact I wanted to focus on enjoying him and his older sister (they now both have a younger sister too).
Content as a full time mum, I soon found a gap once Max started school. This allowed me precious time to reflect on previous years, especially my short time analysing the various art works produced by those with a condition, disability or mental illness during the first year of my MA. That’s when it struck me; art comes from within and shouldn’t be judged on conditioning, prejudice or wrongful perception. In fact, it shouldn’t be judged on outward or inward appearances at all, but on whether or not you like what you see.
My project, Heart & Sold, was created specifically for artists that have Down syndrome. It’s an arts organisation established to help celebrate, support and promote an international collective of creative talent, which now includes artists from America, Nigeria, Australia and the U.K.
We ran a small pilot exhibition in 2012 and its success led to the creation of a fully interactive website, allowing the public the opportunity to read about the artists and purchase limited edition prints of their works. A great PR opportunity then came when the Duke & Duchess of Cambridge accepted one of our artist’s original works for Prince George’s nursery last year. This made headlines around the world, firmly establishing us as a professional arts organisation and advocate for disability art.
This success gave us the confidence and ambition to organise something special – the Heart & Sold exhibition launch! It was called The Reveal and included original works selected from our international collective of artists, but it needed funding…that’s where the Big Lottery Fund came in.
Their belief in our organisation enabled us to produce a professional arts exhibition in the heart of London, allowing our largely unknown and unappreciated artists, the platform they so deserved – to create, educate, inspire, sell and most importantly promote the idea that art is from the heart and has nothing to do with the condition. Find out more about Heart & Sold here.
Build-it is a Big Lottery-funded programme led by London Youth. It will give 1,500 young people in the London Borough of Lambeth the chance to learn construction skills and get work experience through building and repairing social housing and other facilities across the borough.
The film features the Right Track project – part of the Oasis Children’s Venture charity in Stockwell. Build-it has played a vital role in refurbishing a facility popular with young people from the area.
The film includes interviews with Build-it participant Jamie Simpson, Build-it delivery officer Claude Murray, and Right Track manager Jean-Pierre Moore.
For more information on the work of London Youth call Abdullah Mahmood, Communications Support Officer on 020 7549 8815.
London Youth supports a network of over 400 community youth organisations, reaching 75,000 young people across every London borough.
Christine Squires has spent over 10 years volunteering with disability organisations in Gateshead, helping people fight for the services they are entitled to. She used her experiences as an advocate in helping Big Lottery Fund to develop its Ageing Better investment
I lost my mum to cancer nearly six years ago; she was my only family. When I returned to the home we shared knowing she would never come back, I felt all alone for the first time in my life. I had two options, either to continue with my voluntary work or isolate myself by staying in away from people. I decided to help others who feel lonely and isolated.
I am a wheelchair user, so, after my mum died, I was fortunate enough to get an assistance dog called Kina through Dogs for the Disabled. Kina picks things up for me, empties my washing machine, opens and closes doors, takes off my shoes and socks and brings me my post when it drops through the letterbox. Kina is very, very special to me and with him around I never feel alone – he is my best buddy.
When I am out walking my dog I come across many older people who live on their own. It costs nothing to stop and say hello or share a smile with them. It’s the small things that can make a huge difference to someone’s day.
It was a great privilege to be part of the team of 14 older people that helped develop the Big Lottery Fund’s Ageing Better investment by contributing our knowledge of the challenges older people face. I was involved in discussing ideas about social isolation and how people could be more involved within their communities.
I was on the interviewing panel to select the contractors that will support the funded areas and was also involved in the meetings to choose the 15 areas where the investment will happen. My involvement with Ageing Better over the last three years has made me feel more confident in my own skills, knowledge and abilities.
The funded areas now need to reach out and find the many older people who feel lonely and isolated. I believe this funding will mean that fewer older people will feel isolated and feel more connected to their communities.
Ageing Better is funding 15 projects across England to tackle social isolation among older people.