out of past nine and that is the reality
for many people with learning disability
to require support to go out in the
evening I’m going to talk about the work
I do in our charity stay up late that
we’re doing about that and how I got
into it for 15 years I was the bass
player in this punk band heavy load and
three of the members of heavy load had
learning disabilities and we used to
play all over the country and and other
places and we had particularly anarchic
chaotic very joyful and very loud sound
this is this is one of our early gigs
and the audience weren’t always
appreciative of our anarchy but we
didn’t care because we always rocked in
2008 everything changed for us the film
director Jerry Rothwell had been
following us around for two and a half
years and made the feature documentary
heavy load about us which told the tale
of us trying to get out of those social
care they send to style gates where
people weren’t particularly digging our
thing into into the music mainstream
this film came out in 2008 Mark Kermode
made it film of the week on 5 Live we
got some lovely praise from Kylie the
the real actual goddess of pop and and
the film told that story of how we were
trying to take our sound into a more
mainstream setting although Jerry
himself said on reflection maybe the
film was just the story of five blokes
going through a midlife crisis and their
there is that in there and as a result
at the film we went on we play to
Glastonbury festivals we played in
New York we released three albums the
Queen Mother’s dead
shut it and WHAM we had punk anthems
that we’ve written like is Bruce Forsyth
dead
we love George Michael everything is
bollocks very insightful stuff and then
we even got asked to write a theme tune
for the channel 4 drama series castoffs
but the one of the stories in the film
was how we were getting fed up with our
audiences leaving just as we got on
stage it was so like a spinal tap moment
that we didn’t think this has anything
to do with our anarchic sound as soon as
we get on stage half the audience leaves
we fought no there’s got to be a
fundamental flaw of social care systems
and luckily we were proved to be right
some some of the time so we started up
this this campaign ten years ago next
month called stay up late which really
challenged this issue white widest staff
have to finish work at 10 o’clock at
night when people are out enjoying
seeing their favorite bands or going to
the movies or going to the pub with
their mates why the rigid rotors stop
people from doing the stuff that most of
us probably find that we take for
granted so here we are in in Trafalgar
Square this was our last ever gig 2012
as part of the Paralympic celebrations
and by this time we’d set up the charity
stay up late to carry on the work that
we’d started and we try and keep that
punk attitude going throughout our work
and as a charity we do two main things
we’re a punk charity with two main
things
campaigning and our volunteer
befriending project campaigning against
those rigid systems and our volunteer
befriending project is a practical
solution to that mother Teresa said the
most terrible poverty is loneliness and
the feeling of being unloved and in this
country there’s around about 1.4 million
last year ray James from the association
of directors of adult social services
said that in the last five years they’ve
been a real terms cut of 30% to adults
adult social care budgets so that means
money has to be spent on what is seen as
the essentials so budgeting keeping a
roof over your head having support to
take your medication not support to go
out and see your mates and have fun and
socialize in 2010 the learning
disability coalition did some research
to find out what what people what they
thought was going to be the impact of
austerity cuts on people with learning
disabilities so they went out and they
asked people with learning disabilities
how they spent their time and 47% of
them said they spent most of their time
at home 51 percent said they feel lonely
and 64 percent said they don’t get to
see their friends we did a survey last
year to find out what was going on now
and we found that 72 percent of people
said if they don’t get to go out in the
evenings and this isn’t just about
austerity as I said we started our
campaign ten years ago that was two
years before the global banking crisis
so you know there’s a there’s a an
ingrained institutional problem around
this if this inflexible support
and last year the campaign and lonliness
said they came up with a statistic that
loneliness is a bigger risk to health
than smoking 15 cigarettes a day for
your life which is absolutely staggering
and I think the British Heart Foundation
said there’s a 30% increase in the risk
of of heart disease through loneliness
and social isolation so this this is a
picture of probably what many of your
lives
looks like you’ve got you happy you at
the center you’ve got your family your
close family around you then the next
circle out is your your close friends
the people you go to at a time of crisis
and then the wider circle you’ve got
people who have a shared interests or
maybe you’re in the same football team
or go to the same choir or place of
worship or whatever those sorts of
looser connections we have and then in
the outside circle there’s people who
are paid to be in your life so that
could be your your plumber your your
hairdresser or your counselor those
people you pay to be there and then on
the outskirts as people you know but not
by name so people you might bump into in
the street this is what that picture
looks like for many people with learning
disabilities they’ve got close family at
the very center and then people who are
paid to be in their lives on the outside
and avoid in the middle so we thought we
would set up our volunteer befriending
project to try and do something about
this the blocks that are getting in the
way of people going out are like I’ve
mentioned the lack of support people’s
worry about being safe in their
community accessible transport or
transport that doesn’t run at the right
time of day people not having the
confidence or the motivation or anybody
to go with and I wouldn’t go to a gig on
my own I like to go with somebody else
so I can enjoy the time with them and
also a lack of information not knowing
what’s going on but we also know that
there is an absolute desire by people
with learning disabilities to be
active in their communities and be part
of everything that we we take for
granted so there might well be some
local government types in the audience
today I don’t know you can keep that
secret if you like but they’re probably
getting really excited by this slide
because it’s full of words that that get
them excited like community capacity and
well-being and assets based approaches
and all of that sort of stuff blah blah
blah
because try try um trying to excite
somebody a gig to get involved in your
volunteer friending project by using
that kind of language so we own use that
sort of language we called our project
dig buddies and gig buddies works really
simply we match up socially isolated
people with learning disabilities and/or
autism with a volunteer who loves the
same kind of music as they do or other
cultural interests so we could think
about the connections that might exist
in this room there’s probably people up
there who love musical theater and maybe
maybe some some over there who love
musical theater or this there’s
definitely some some some punks are
punks down here there’s probably some
over there bizarrely I think there was
some Phil Collins fans in the in the
silent disco but we won’t ask you to
reveal yourselves but the point is that
you’ve got things in common in this room
with people who are strangers at the
moment but you could end up through
those shared connections making
friendships and that’s how gig buddy’s
works so I think there’s three main
reasons why people don’t volunteer one
is they don’t want to to is they don’t
have the time and three is they don’t
know what to do and big buddies tries to
at least solve the second two you can’t
do anything about people who don’t want
to do something nice but if you can turn
if you can turn what you’re doing
already into a volunteering opportunity
then you know that’s a win-win isn’t it
going out to a gig
seeing a band that you love and taking
somebody else with you to enjoy it as
well that’s that’s even better so we try
and make volunteering as easy as
possible we do do all of the the
criminal record checks and all of that
sort of thing but we try and cut through
as much of the red tape as possible
hence the awful visual pun this for me
is a picture of what being a gig body is
all about just an ordinary scene of two
people Ryan and Natalie sitting in a pub
talking about heavy metal eating pizza
and enjoying beer that’s what it’s about
just ordinary stuff when we started gig
buddies we started in 2012 with 2,000
pounds in our pockets we’ve now got 80
pairs of buddies across Sussex we’ve
supported an organisation in Sydney to
set one up another one in Edinburgh and
then we’ve got projects starting in
Portsmouth and Halifax next year and
really all it’s trying to do is support
people to do ordinary stuff earlier this
year I was asked to depict what our
charity does in a picture and I came up
it’s the most ordinary thing I could
possibly think of
[Applause]
don’t dunk those at home people it’s all
we’re doing is just trying to make life
ordinary for people and as I returned
took writing this speech I was also
thinking about we wrote a manifesto for
change last year where people with
learning disabilities had told us what
they wanted from their lives much like
the birds involved food drink sets but
it also involved seeing their friends
and going out in the evenings choosing
their bedtimes
and just regular stuff like that and
lost last month the the Care Quality
Commission published a state of care
report which said that good quality
support can be the small things like
handing out the post and making people
cups of tea
I disagree no it isn’t we need to set up
our sights a lot higher it is about
supporting people to have friendships
develop relationships have sex lives
have paid work and all of those kind of
so thinking about the theme of heroes I
got thinking about Clark Kent and how he
goes into the phone box and transforms
himself into Superman here’s our project
manager Madeline going into our local
phone box and look what happens when she
comes back out she looks exactly the
same and that’s what gig budding is all
about you don’t have to do anything
different you just be yourself just be a
nice person and share time with people
but if you do think that going to gigs
is an act of heroism then we can all be
heroes and not just for one day thank
you very much [Applause]