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