[Music]
it’s not you it’s me
no wait a moment it’s it’s actually damn
you’re fine
I utter every word slowly with precision
not in a manner of good by the way none
lovers do up on breaking the others
heart I speak slowly fragmenting each
syllable so you know so I do too that
it’s not you it’s them that you’re fine
by smiling at me with no good reason by
mixing up the hours of the day by making
up 1,001 excuses for not counting
backwards as they say and after all this
testing they produce a number at first
two digits then just one one digit to
define the substance the content of a
person that is gone but why is this a
tragedy I asked with all sincerity that
I can master as if they haven’t told me
yet as if they haven’t asked will you
get it too how do you watch Phil Alice
you should probably run some genetic
tests so you don’t have the illness to
your kids my kids I don’t have kids I do
still have my mom so what is so
distressing about this illness I
questioned their premise I challenge it
at the core my social attire of
rebellion would not accept the letting
go I longed to redefine this definition
of gloom and hopelessness and doom what
do you mean what’s distressing
they retort with authorial conviction no
hesitation in their voice how can you
see the trouble in your own situation
your mother is fading away her brain is
full of holes like Swiss cheese melting
away every time and your empire still
warm a flame soon enough she won’t
recognize her husband or you nor herself
she’s not fading away doctor she’s very
much present she’s right here next to me
in front of you look at her she is even
gaining weight the entire 24 pounds and
still you can’t see her or talk to her
instead you talk about her you see right
through her sweetie sweetie you’re so
lucky your mother is dying my mother my
my mom my mom is dying that’s the final
diagnosis the bottom line based on what
an unusual behavior problematic you say
or trying to be more maybe less
politically correct behavioral
disturbance that must be managed as if
you don’t suffer from moods and bad days
besides aren’t we all dying from the
moment that we’re born you didn’t even
look inside her to see and if you did
what would you see scar tissue burn
bridges massacres hunger or would you
see a cemetery of dying cells or nothing
to go with a metaphorical empty shell a
lost soul perhaps perhaps it’s us who
lose our souls our humanity or the
memory of what it means being human of
acceptance and social accountability and
other insignificant values for these are
easily forgotten especially when one
deals with those who can’t read the time
or count backwards from 100 in sequences
of seven how do you quantify emptiness
or death or life how dead is dead and
what technology does one use to measure
suffering a thermostat a blood-pressure
meter
a ruler perhaps these without any drop
of doubt are the important things in
life numbers names and knowing who the
president is and how they are these are
the things the fragments that define and
constitute my identity and so these will
make me and her joyful correct doctor so
sure sure it is a tragedy that my mom
doesn’t remember my name from time to
time and instead she calls me my child
and always remembers to light up with a
smile and a hug upon seeing me so doctor
I wish everybody could rejoice upon
seeing my face the way she does because
mom it’s not you it’s then you’re fine
[Applause]
thank you so my mom was diagnosed with
Alzheimer’s at the age of 58 right after
that we were told that we should forget
about her and take care of ourselves no
one told us how one forgets about a
mother and no one told us how we should
take care of ourselves for me as a 28
young young person I was not willing to
accept this so I decided to look into
what I could actually do to to find ways
to engage in a meaningful way with my
mom I wanted to have fun because
everything I I saw when I went online
was the prognosis the tragedy and
essentially hopelessness I wanted
something else I wanted I just wanted to
have fun with my mom I wanted a way to
connect so I did what an academic knows
how to do best I registered into a ph.d
program and so coming from the
humanities and the arts I registered
into a program in comparative literature
here at the University of Toronto and I
decided that I would like to explore the
ways we talk about memory loss in our
cultural imagination so as I was as I
was researching the topic I I realized
that a lot of language that we use in
fiction in poetry actually migrates into
clinical language into medical discourse
into policy papers policy papers that
impact and effect directly people’s
lives policy papers that impact people’s
language the same language and then
people use to narrate their stories
stories of despair of hopelessness of
memory loss memory loss that qualifies
everyone who seem to lose mem
as losers it labels them as the losers
who lost the lottery of health lost the
lottery of remembering so I decided that
they wanted to change it and I started
researching into things that I knew and
simultaneously started trying to engage
with my mom through the world that I
knew best
so as an art historian who focused on
photography I decided that I will show
my mom photographs I will show her
photographs it will trigger her memory
this will be great huge disappointment
no memory was triggered what was
triggered however was imagination all of
a sudden she was telling me stories her
world opened up to me because all of a
sudden I could see these characters
coming to life from inside the images
now at this moment we were not an
Alzheimer’s patient and a caregiver at
this moment we were two humans two
people connecting through storytelling
we were human the other thing that I
tried with my mom except for photography
was just listening so the art of
improvisational theatre tells us that we
should be in the moment and we should
yes and everything the person says we
should affirm and reaffirm what the
person says and bring something new so I
was trying to do that but sometimes it
was really hard really challenging that
is one time my mom and I was were in the
car I was driving from one doctor to
another
it was the series of doctor’s
appointments and so we stopped at the
light and my mom who seems completely
apathetic all of a sudden looks up and
says a bird
how do you respond to that I had an idea
how to but I decided to do the only
thing I knew or my body produced a sound
basically I said mm-hmm I had no idea
what’s going to come but all of a sudden
it triggered something new now I will
tell you what triggered right after I’ll
tell you something about about this
sound so the new is a response it’s
something that we do often times when we
have a conversation and this is how the
person in conversation with us knows
that we are listening that we are
affirming them now right now for
instance me standing on the stage alone
in the quiet auditorium not hearing any
moon sound makes me feel that maybe I’m
wasting your time maybe my story is not
valuable so if if only someone could
make a sound that would be great thank
you so much
so so this hmm produced another leap of
imagination from my mom and so she said
it’s the keeper the bird was the keeper
now I had no idea where this was going
but I was curious at this stage and so I
asked her keeper of what she paused for
a moment and said the clouds of course
keeper of the clouds my mom was a poet
who knew I’ll tell you more about keeper
of the clouds right after this so this
is me trying to research more into into
art realizing that I am really happy
finding all this information because
it’s out there you can find so much
information about arts arts
interventions in dementia care and it’s
beautiful and it’s it’s wonderful and
there is so much done in music and
healthcare in social clownin and health
care the only problem is that this
information about all these
interventions all these amazing research
that is being done not is not translated
to the popular culture and so we are
still using the same language to talk
about dementia the stigma persists its
perpetuated at all times we’re still
talking about memory loss as memory loss
we’re still talking about people with
dementia as sufferers my mum doesn’t
suffer so I decided that we need to do
something about that
how shall we change it I needed to find
out how do I actually interrupt and
disrupt the stigma so arts seemed to
work for me and my mom and so I
continued looking for more more options
to actually interrupt this stigma and
disrupt it and this is when I ended up
actually writing keeper of the clouds
and turning it into a graphic memoir a
very short one illustrated by the
amazing AV templed
who at the time was 17 today she’s 18 so
this was a collaborative project and
this collaborative project has become
parked a huge part actually of our
family’s Alzheimer’s experience this
artistic collaboration has become part
of what people assume to be
a disaster a suffering experience so we
what we did was to draw from our
challenging experiences they are
challenging experiences because it is a
life altered condition but these
challenging experiences were used by us
as raw materials for creative production
realizing that this is possible was a
huge affirmation for me that what I was
on the road to create was the right
thing last week John he’s 46 he lives in
Michigan and he’s an artist living with
dementia
he read keeper of the clouds to his
six-year-old son and wrote me their
impressions together he said that my
story inspired him to tell his story now
this is something to me that it’s so
important and so fulfilling to hear that
because it means that there are going to
be more stories more voices that are not
infiltrated by the stigma that are not
contaminated by the loss there will be
still loss but the loss might change the
meaning of the loss might change and
this is what counts the more voices
we’ll have the more diversity in the
narrative structure we will have so
seeing that I have I’ve created arts for
dementia and arts for dementia it’s a
portal a social portal that aggregates
and maps all the projects and creative
endeavors around the world we’re
actually using the internet the way it
should be used because oftentimes you
see that there is a amazing project in
England and then you try to reach out
for to them for funding and they tell
you oh no but you’re in Canada so the
idea is for all the projects around the
world to be under the same
umbrella of arts for dementia so it will
be accessible and easily found such that
clinicians could actually refer their
patients to arts for dementia we have a
network a global network of people who
are creating and realizing that even
when they’re in the most challenging
situation in their life they can still
do something we should be able to live
with dementia rather than just die from
it
and this is why improving quality of
life with dementia is so important it’s
so crucial
so apart from providing a space to
actually collaborate on projects and
create our own projects around the world
we’re also creating educational programs
and collaborations between between
artists and and the most recent
collaboration we are creating with the
second veni vidi multiplex and who are
actually there working is it exhibited
at the distillery district right now in
Toronto at the light fest and their trio
from the Netherlands and they’re
interested to to create a public art
installation to help to help connect
with people with dementia so this is my
mom
today and this is my dad today my mom is
no longer walking she’s bedridden and
she’s no longer talking and yet whenever
she sees my dad my brother or myself
she always lights up with a smile and
this tells something to us it tells us
that it means that our positive our
engagement with her through arts creates
something creates this positive
connection that allows her to still
rejoice upon seeing us so the note that
I want to end this talk is actually that
if we work together because arts for
dementia is a beginning
it’s just a start and if we work
together we can actually spread the word
that there are ways to live well and
have fun with dementia the dementia is
not the end thank you
[Applause]
it’s not you it’s me
no wait a moment it’s it’s actually damn
you’re fine
I utter every word slowly with precision
not in a manner of good by the way none
lovers do up on breaking the others
heart I speak slowly fragmenting each
syllable so you know so I do too that
it’s not you it’s them that you’re fine
by smiling at me with no good reason by
mixing up the hours of the day by making
up 1,001 excuses for not counting
backwards as they say and after all this
testing they produce a number at first
two digits then just one one digit to
define the substance the content of a
person that is gone but why is this a
tragedy I asked with all sincerity that
I can master as if they haven’t told me
yet as if they haven’t asked will you
get it too how do you watch Phil Alice
you should probably run some genetic
tests so you don’t have the illness to
your kids my kids I don’t have kids I do
still have my mom so what is so
distressing about this illness I
questioned their premise I challenge it
at the core my social attire of
rebellion would not accept the letting
go I longed to redefine this definition
of gloom and hopelessness and doom what
do you mean what’s distressing
they retort with authorial conviction no
hesitation in their voice how can you
see the trouble in your own situation
your mother is fading away her brain is
full of holes like Swiss cheese melting
away every time and your empire still
warm a flame soon enough she won’t
recognize her husband or you nor herself
she’s not fading away doctor she’s very
much present she’s right here next to me
in front of you look at her she is even
gaining weight the entire 24 pounds and
still you can’t see her or talk to her
instead you talk about her you see right
through her sweetie sweetie you’re so
lucky your mother is dying my mother my
my mom my mom is dying that’s the final
diagnosis the bottom line based on what
an unusual behavior problematic you say
or trying to be more maybe less
politically correct behavioral
disturbance that must be managed as if
you don’t suffer from moods and bad days
besides aren’t we all dying from the
moment that we’re born you didn’t even
look inside her to see and if you did
what would you see scar tissue burn
bridges massacres hunger or would you
see a cemetery of dying cells or nothing
to go with a metaphorical empty shell a
lost soul perhaps perhaps it’s us who
lose our souls our humanity or the
memory of what it means being human of
acceptance and social accountability and
other insignificant values for these are
easily forgotten especially when one
deals with those who can’t read the time
or count backwards from 100 in sequences
of seven how do you quantify emptiness
or death or life how dead is dead and
what technology does one use to measure
suffering a thermostat a blood-pressure
meter
a ruler perhaps these without any drop
of doubt are the important things in
life numbers names and knowing who the
president is and how they are these are
the things the fragments that define and
constitute my identity and so these will
make me and her joyful correct doctor so
sure sure it is a tragedy that my mom
doesn’t remember my name from time to
time and instead she calls me my child
and always remembers to light up with a
smile and a hug upon seeing me so doctor
I wish everybody could rejoice upon
seeing my face the way she does because
mom it’s not you it’s then you’re fine
[Applause]
thank you so my mom was diagnosed with
Alzheimer’s at the age of 58 right after
that we were told that we should forget
about her and take care of ourselves no
one told us how one forgets about a
mother and no one told us how we should
take care of ourselves for me as a 28
young young person I was not willing to
accept this so I decided to look into
what I could actually do to to find ways
to engage in a meaningful way with my
mom I wanted to have fun because
everything I I saw when I went online
was the prognosis the tragedy and
essentially hopelessness I wanted
something else I wanted I just wanted to
have fun with my mom I wanted a way to
connect so I did what an academic knows
how to do best I registered into a ph.d
program and so coming from the
humanities and the arts I registered
into a program in comparative literature
here at the University of Toronto and I
decided that I would like to explore the
ways we talk about memory loss in our
cultural imagination so as I was as I
was researching the topic I I realized
that a lot of language that we use in
fiction in poetry actually migrates into
clinical language into medical discourse
into policy papers policy papers that
impact and effect directly people’s
lives policy papers that impact people’s
language the same language and then
people use to narrate their stories
stories of despair of hopelessness of
memory loss memory loss that qualifies
everyone who seem to lose mem
as losers it labels them as the losers
who lost the lottery of health lost the
lottery of remembering so I decided that
they wanted to change it and I started
researching into things that I knew and
simultaneously started trying to engage
with my mom through the world that I
knew best
so as an art historian who focused on
photography I decided that I will show
my mom photographs I will show her
photographs it will trigger her memory
this will be great huge disappointment
no memory was triggered what was
triggered however was imagination all of
a sudden she was telling me stories her
world opened up to me because all of a
sudden I could see these characters
coming to life from inside the images
now at this moment we were not an
Alzheimer’s patient and a caregiver at
this moment we were two humans two
people connecting through storytelling
we were human the other thing that I
tried with my mom except for photography
was just listening so the art of
improvisational theatre tells us that we
should be in the moment and we should
yes and everything the person says we
should affirm and reaffirm what the
person says and bring something new so I
was trying to do that but sometimes it
was really hard really challenging that
is one time my mom and I was were in the
car I was driving from one doctor to
another
it was the series of doctor’s
appointments and so we stopped at the
light and my mom who seems completely
apathetic all of a sudden looks up and
says a bird
how do you respond to that I had an idea
how to but I decided to do the only
thing I knew or my body produced a sound
basically I said mm-hmm I had no idea
what’s going to come but all of a sudden
it triggered something new now I will
tell you what triggered right after I’ll
tell you something about about this
sound so the new is a response it’s
something that we do often times when we
have a conversation and this is how the
person in conversation with us knows
that we are listening that we are
affirming them now right now for
instance me standing on the stage alone
in the quiet auditorium not hearing any
moon sound makes me feel that maybe I’m
wasting your time maybe my story is not
valuable so if if only someone could
make a sound that would be great thank
you so much
so so this hmm produced another leap of
imagination from my mom and so she said
it’s the keeper the bird was the keeper
now I had no idea where this was going
but I was curious at this stage and so I
asked her keeper of what she paused for
a moment and said the clouds of course
keeper of the clouds my mom was a poet
who knew I’ll tell you more about keeper
of the clouds right after this so this
is me trying to research more into into
art realizing that I am really happy
finding all this information because
it’s out there you can find so much
information about arts arts
interventions in dementia care and it’s
beautiful and it’s it’s wonderful and
there is so much done in music and
healthcare in social clownin and health
care the only problem is that this
information about all these
interventions all these amazing research
that is being done not is not translated
to the popular culture and so we are
still using the same language to talk
about dementia the stigma persists its
perpetuated at all times we’re still
talking about memory loss as memory loss
we’re still talking about people with
dementia as sufferers my mum doesn’t
suffer so I decided that we need to do
something about that
how shall we change it I needed to find
out how do I actually interrupt and
disrupt the stigma so arts seemed to
work for me and my mom and so I
continued looking for more more options
to actually interrupt this stigma and
disrupt it and this is when I ended up
actually writing keeper of the clouds
and turning it into a graphic memoir a
very short one illustrated by the
amazing AV templed
who at the time was 17 today she’s 18 so
this was a collaborative project and
this collaborative project has become
parked a huge part actually of our
family’s Alzheimer’s experience this
artistic collaboration has become part
of what people assume to be
a disaster a suffering experience so we
what we did was to draw from our
challenging experiences they are
challenging experiences because it is a
life altered condition but these
challenging experiences were used by us
as raw materials for creative production
realizing that this is possible was a
huge affirmation for me that what I was
on the road to create was the right
thing last week John he’s 46 he lives in
Michigan and he’s an artist living with
dementia
he read keeper of the clouds to his
six-year-old son and wrote me their
impressions together he said that my
story inspired him to tell his story now
this is something to me that it’s so
important and so fulfilling to hear that
because it means that there are going to
be more stories more voices that are not
infiltrated by the stigma that are not
contaminated by the loss there will be
still loss but the loss might change the
meaning of the loss might change and
this is what counts the more voices
we’ll have the more diversity in the
narrative structure we will have so
seeing that I have I’ve created arts for
dementia and arts for dementia it’s a
portal a social portal that aggregates
and maps all the projects and creative
endeavors around the world we’re
actually using the internet the way it
should be used because oftentimes you
see that there is a amazing project in
England and then you try to reach out
for to them for funding and they tell
you oh no but you’re in Canada so the
idea is for all the projects around the
world to be under the same
umbrella of arts for dementia so it will
be accessible and easily found such that
clinicians could actually refer their
patients to arts for dementia we have a
network a global network of people who
are creating and realizing that even
when they’re in the most challenging
situation in their life they can still
do something we should be able to live
with dementia rather than just die from
it
and this is why improving quality of
life with dementia is so important it’s
so crucial
so apart from providing a space to
actually collaborate on projects and
create our own projects around the world
we’re also creating educational programs
and collaborations between between
artists and and the most recent
collaboration we are creating with the
second veni vidi multiplex and who are
actually there working is it exhibited
at the distillery district right now in
Toronto at the light fest and their trio
from the Netherlands and they’re
interested to to create a public art
installation to help to help connect
with people with dementia so this is my
mom
today and this is my dad today my mom is
no longer walking she’s bedridden and
she’s no longer talking and yet whenever
she sees my dad my brother or myself
she always lights up with a smile and
this tells something to us it tells us
that it means that our positive our
engagement with her through arts creates
something creates this positive
connection that allows her to still
rejoice upon seeing us so the note that
I want to end this talk is actually that
if we work together because arts for
dementia is a beginning
it’s just a start and if we work
together we can actually spread the word
that there are ways to live well and
have fun with dementia the dementia is
not the end thank you
[Applause]
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