[Music]
Chloe and I are here to share with you
why we believe arguments for inclusion
should be based on gain not pity I am a
linguistic being and my halving of
language bias is my view of the world
I’ll be presenting verbally Chloe is a
sensory being her view of the world is
just as bias as my own and she will be
presenting through her expression and
presence here today and a linguistic
being is just somebody who has acquired
and uses language to experience and
frame meaning and a sensory being is a
person whose primary experience of the
world and meaning within it is sensory
and Chloe and I are each just one
example of two very diverse groups so I
believe that pity erodes life
that’s how I signed off my first letter
of application to teach children with
severe and profound special educational
needs and disabilities and when I was
cool to interview I was told that I had
been invited there not because of my
professional qualifications or personal
experience but because they’d wanted to
see if I had really written that letter
my lack of pity for the people I work on
behalf of at the sensory projects does
not stem from a lack of understanding I
regularly meet children who lead
foreshortened lives
I witnessed the struggles they face and
through the window of Facebook once
those lives are over I watched their
families and I see their parents snapped
smiling by friends at parties the light
in their eyes is gone
I watched the color drain out of though
world’s and people ask them how they
cope people say they couldn’t cope if it
happened to them they couldn’t even
imagine it and for the record I’ve known
enough of these families now to know
that coping isn’t a thing they do coping
is a thing that is done to them by the
continuation of life beyond that first
decision not to follow your child into
the grave and that’s no small one beyond
that there is no doing coping happens
life happens and so no my lack of pity
does not stem from naivety have a naive
I’m a look my lack of pity is down to
its lack of utility it certainly has no
use in breaking down the barriers to
inclusion and we’re going to explain why
everyone lives their lives on a scale of
one to ten good to bad and our scale
stretches according to our experience
it’s a bit like when medics attending
trauma victims asked them to rate their
pain from 1 to 10 and then medicate
accordingly it’s very subjective but
it’s very real and when we ask someone
who currently believes their life to be
running at a stress level 8 – pity
we’re asking them to give some think
they do not believe they have and sure
you know a gift is being given here
we’re great who wouldn’t want to hang
out with us it’s best not to check that
part of the argument too closely if the
gift goes both ways
how much more open with those ears
beyond that stress level 8 person if
instead of asking them to give we were
offering them a gift we tend to think
about the barriers to inclusion as being
physical things like ramp access and
specialist wheelchairs or hearing aids
or funky pieces of equipment and these
things are important changing places for
example a disabled toilet is
accessible to those who can shift
themselves from chair to toilet and if
you can’t then super Josh on my slide is
showing you what a disabled toilet means
to you how can it be that in 2017 in a
country like ours we are still asking
for toilets for some members of our
society just you know just imagine if
you’d been invited here today and told
how fantastic the event is gonna be just
one thing to take note of before you
come the toilets will be out of action
but don’t worry because we will be
handing out nappy pads on the door and
if you want to change you can go and lie
on the toilet floor to do it you’d have
still come right that would be fine no
if it’s not okay for you why is it okay
for somebody who uses a wheelchair these
things are important but if we had all
of these things would that be inclusion
acheived know the real barriers to
inclusion are those of understanding and
awareness it’s not a lack of ability in
them it’s a lack of insight in us and
the argument for inclusion should be
made based on the extraordinariness of
these lives
the brilliance to the moment shared the
unique perspective they bring you’ve met
Larry we’d like to introduce you to some
of her friends this is Shannon Shannon
can teach you about joy and connection
and the present moment this is Hannah
Hannah can teach you wonder curiosity
and persistence and this was Harry Harry
was a super skilled communicator who
used the limited set of resources he was
given to communicate a thousand things
in his short life and I’m devastated
that I won’t get to
from Harry anymore I’m not saying these
things to be nice these talents are real
when we first planned this presentation
we plan to present you with a list of
reasons based on gain not pity why
people like Chloe and her friends should
be included but we’ve decided not to
we’re gonna start the list and we want
you to continue it and together we will
create a petition for inclusion a
thousand ideas long so here’s one to get
you going our society goes through
emotional phases just like a person does
and currently we are living through an
age of anxiety with nearly a quarter of
the UK population reporting feeling
anxious all the time
corresponding to this rise in anxiety
we’re seeing increased interest in
mindfulness practice with places as
prestigious as Oxford University
dedicating time to its study mindfulness
has been shown to be a tonic for anxiety
mindfulness is the nun judgemental
attention to the present and in the
population of people who are sensory
beings we meet a great many people who
lead lives of constant non-judgmental
attention to the present and who often
find those lives joyful thinking in this
way you quickly come up with ideas of
what we all gain from inclusion and you
also realize that the line between those
doing the including and those being
included is distinctly blurry which side
of the line do you fall on will you
always fall on that side which side of
the line do I fall on have you assumed
that I’m neurotypical I’m not I’m
autistic do we want a world where
everyone is the same
a world without people with Down
syndrome without people with autism
without people with Tourette’s without
without without you know the assumption
that is made when trying to eliminate
diversity is one of hierarchy we assume
that because some lives are different
they are necessarily better or worse
than our own in the idea that some lives
for their own good should not be lived
is just shocking the arrogant you know
our lives is your life so good that you
think one’s different – it should be
prevented Chloe’s life is hers to live
not yours hers to judge she’s living it
and getting every ounce of life out of
it are you doing the same with yours
could you learn a thing or two from
hanging out with Chloe I bet no one who
had knows Chloe has a bad hair day and
ranks her innate treat her pain saw out
her seizures tackle medical difficulties
sure but eliminate difference is that
really what we want to do acknowledging
difference does not necessarily mean the
creation of a hierarchy difference
brings gifts as a linguistic being I see
my life in this way and as a sensory
being Chloe views her life in this way
and when we work together to share our
views we each see more if we try and
make everyone’s view the same or try and
shut people out from our way of seeing
we see less different and included we
gained different and excluded we lose
here’s one more for the list this one I
hear a lot from people who care directly
for individuals with profound
disabilities complex needs autism Down
syndrome fragile X Noonan syndrome
charge
Rhett’s you know on and on into this
one’s this is what they say I have
learned so much from them and people
find it hard to articulate this learning
but it is a stretching of the ha
an extension to one’s limits a depth of
experience unanticipated an ability to
function without sleep people give out
free phorus worries and selfish
preoccupations and focus on a bigger
picture and time runs out for insecurity
and bad hair days I believe when we
think about inclusion we should consider
evolution and how we want progress to be
measured you have body survival of the
fittest and as a species we’re living
into our 80s and 90s it’s done for us so
then you have mind commentators talk
about horizontal evolution about
promoting survival through the
horizontal exchange of knowledge and we
have the World Wide Web so perhaps it’s
time for a third as society diversifies
does it not call for an evolution of the
soul for an increased capacious honest
at the heart for more caring for more
awareness and understanding think about
how you want progress to be measured you
want to see us becoming ever stronger
and more symmetrical or knowing more and
more stuff what about more understanding
more empathetic more loving when we seek
to include those who are different to
ourselves no matter what that difference
might be this is the future we all gain
our future for ourselves and for our
children be those children neurotypical
physically typical or otherwise
inclusion is for everyone thank you for
your attention
you
you
Chloe and I are here to share with you
why we believe arguments for inclusion
should be based on gain not pity I am a
linguistic being and my halving of
language bias is my view of the world
I’ll be presenting verbally Chloe is a
sensory being her view of the world is
just as bias as my own and she will be
presenting through her expression and
presence here today and a linguistic
being is just somebody who has acquired
and uses language to experience and
frame meaning and a sensory being is a
person whose primary experience of the
world and meaning within it is sensory
and Chloe and I are each just one
example of two very diverse groups so I
believe that pity erodes life
that’s how I signed off my first letter
of application to teach children with
severe and profound special educational
needs and disabilities and when I was
cool to interview I was told that I had
been invited there not because of my
professional qualifications or personal
experience but because they’d wanted to
see if I had really written that letter
my lack of pity for the people I work on
behalf of at the sensory projects does
not stem from a lack of understanding I
regularly meet children who lead
foreshortened lives
I witnessed the struggles they face and
through the window of Facebook once
those lives are over I watched their
families and I see their parents snapped
smiling by friends at parties the light
in their eyes is gone
I watched the color drain out of though
world’s and people ask them how they
cope people say they couldn’t cope if it
happened to them they couldn’t even
imagine it and for the record I’ve known
enough of these families now to know
that coping isn’t a thing they do coping
is a thing that is done to them by the
continuation of life beyond that first
decision not to follow your child into
the grave and that’s no small one beyond
that there is no doing coping happens
life happens and so no my lack of pity
does not stem from naivety have a naive
I’m a look my lack of pity is down to
its lack of utility it certainly has no
use in breaking down the barriers to
inclusion and we’re going to explain why
everyone lives their lives on a scale of
one to ten good to bad and our scale
stretches according to our experience
it’s a bit like when medics attending
trauma victims asked them to rate their
pain from 1 to 10 and then medicate
accordingly it’s very subjective but
it’s very real and when we ask someone
who currently believes their life to be
running at a stress level 8 – pity
we’re asking them to give some think
they do not believe they have and sure
you know a gift is being given here
we’re great who wouldn’t want to hang
out with us it’s best not to check that
part of the argument too closely if the
gift goes both ways
how much more open with those ears
beyond that stress level 8 person if
instead of asking them to give we were
offering them a gift we tend to think
about the barriers to inclusion as being
physical things like ramp access and
specialist wheelchairs or hearing aids
or funky pieces of equipment and these
things are important changing places for
example a disabled toilet is
accessible to those who can shift
themselves from chair to toilet and if
you can’t then super Josh on my slide is
showing you what a disabled toilet means
to you how can it be that in 2017 in a
country like ours we are still asking
for toilets for some members of our
society just you know just imagine if
you’d been invited here today and told
how fantastic the event is gonna be just
one thing to take note of before you
come the toilets will be out of action
but don’t worry because we will be
handing out nappy pads on the door and
if you want to change you can go and lie
on the toilet floor to do it you’d have
still come right that would be fine no
if it’s not okay for you why is it okay
for somebody who uses a wheelchair these
things are important but if we had all
of these things would that be inclusion
acheived know the real barriers to
inclusion are those of understanding and
awareness it’s not a lack of ability in
them it’s a lack of insight in us and
the argument for inclusion should be
made based on the extraordinariness of
these lives
the brilliance to the moment shared the
unique perspective they bring you’ve met
Larry we’d like to introduce you to some
of her friends this is Shannon Shannon
can teach you about joy and connection
and the present moment this is Hannah
Hannah can teach you wonder curiosity
and persistence and this was Harry Harry
was a super skilled communicator who
used the limited set of resources he was
given to communicate a thousand things
in his short life and I’m devastated
that I won’t get to
from Harry anymore I’m not saying these
things to be nice these talents are real
when we first planned this presentation
we plan to present you with a list of
reasons based on gain not pity why
people like Chloe and her friends should
be included but we’ve decided not to
we’re gonna start the list and we want
you to continue it and together we will
create a petition for inclusion a
thousand ideas long so here’s one to get
you going our society goes through
emotional phases just like a person does
and currently we are living through an
age of anxiety with nearly a quarter of
the UK population reporting feeling
anxious all the time
corresponding to this rise in anxiety
we’re seeing increased interest in
mindfulness practice with places as
prestigious as Oxford University
dedicating time to its study mindfulness
has been shown to be a tonic for anxiety
mindfulness is the nun judgemental
attention to the present and in the
population of people who are sensory
beings we meet a great many people who
lead lives of constant non-judgmental
attention to the present and who often
find those lives joyful thinking in this
way you quickly come up with ideas of
what we all gain from inclusion and you
also realize that the line between those
doing the including and those being
included is distinctly blurry which side
of the line do you fall on will you
always fall on that side which side of
the line do I fall on have you assumed
that I’m neurotypical I’m not I’m
autistic do we want a world where
everyone is the same
a world without people with Down
syndrome without people with autism
without people with Tourette’s without
without without you know the assumption
that is made when trying to eliminate
diversity is one of hierarchy we assume
that because some lives are different
they are necessarily better or worse
than our own in the idea that some lives
for their own good should not be lived
is just shocking the arrogant you know
our lives is your life so good that you
think one’s different – it should be
prevented Chloe’s life is hers to live
not yours hers to judge she’s living it
and getting every ounce of life out of
it are you doing the same with yours
could you learn a thing or two from
hanging out with Chloe I bet no one who
had knows Chloe has a bad hair day and
ranks her innate treat her pain saw out
her seizures tackle medical difficulties
sure but eliminate difference is that
really what we want to do acknowledging
difference does not necessarily mean the
creation of a hierarchy difference
brings gifts as a linguistic being I see
my life in this way and as a sensory
being Chloe views her life in this way
and when we work together to share our
views we each see more if we try and
make everyone’s view the same or try and
shut people out from our way of seeing
we see less different and included we
gained different and excluded we lose
here’s one more for the list this one I
hear a lot from people who care directly
for individuals with profound
disabilities complex needs autism Down
syndrome fragile X Noonan syndrome
charge
Rhett’s you know on and on into this
one’s this is what they say I have
learned so much from them and people
find it hard to articulate this learning
but it is a stretching of the ha
an extension to one’s limits a depth of
experience unanticipated an ability to
function without sleep people give out
free phorus worries and selfish
preoccupations and focus on a bigger
picture and time runs out for insecurity
and bad hair days I believe when we
think about inclusion we should consider
evolution and how we want progress to be
measured you have body survival of the
fittest and as a species we’re living
into our 80s and 90s it’s done for us so
then you have mind commentators talk
about horizontal evolution about
promoting survival through the
horizontal exchange of knowledge and we
have the World Wide Web so perhaps it’s
time for a third as society diversifies
does it not call for an evolution of the
soul for an increased capacious honest
at the heart for more caring for more
awareness and understanding think about
how you want progress to be measured you
want to see us becoming ever stronger
and more symmetrical or knowing more and
more stuff what about more understanding
more empathetic more loving when we seek
to include those who are different to
ourselves no matter what that difference
might be this is the future we all gain
our future for ourselves and for our
children be those children neurotypical
physically typical or otherwise
inclusion is for everyone thank you for
your attention
you
you
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