I am thrilled to introduce our final
speaker for this week we very much
wanted to be able to hear from Susan and
specifically to have Susan sending us
off today so the chance to have this
final bit of inspiration and a shot in
the arm as we all head back to our own
homes and offices I hope you had a
chance to meet Susan over the course of
the past couple days and enjoy
conversation with her Susan is um by
trade and art historian and curator but
she's also the founder and executive
director of Arts Philadelphia a small
nonprofit dedicated to enhancing quality
of life for people living with dementia
in the Greater Philadelphia region
sounds familiar
she recently launched a new
collaboration that I'm excited to hear
more about Priscilla Delphia is Thomas
Jefferson University called arts at Jeff
in which people living with dementia and
their care partners volunteer as the
mentors for medical and other health
professions at the university please
help me in welcoming up Susan Shepherd
okay so the burning question is can you
even see me okay
it is a real privilege and it's a little
scary to have this spot on the program
first of all I want to thank Jessica for
inviting me I want to thank Brittany and
Jessica for an extraordinary conference
I don't know
I don't know about the rest of you but
I've gone to a lot of conferences I've
organized a few conferences and this I
still think they're not telling the
truth when they say they haven't done
this before however to get a little more
serious
so my mandate from Jessica was to
encourage us to think at this point in
the conference as we're heading home to
get back into delivering programs why is
it important for us to do what we do and
I'm going to do my best to at least talk
about some of the reasons that I think
it's so important that you all do what
you do you see the title of the talk I
want to start by asking you if you were
to define the term empathy what does
empathy mean to you the field for others
wonderful yeah walk in another's shoes
to feel for others to walk in another's
shoes
mmm wonderful so it's not necessarily
that we need or even could fully
understand what someone else is going
through but we need to understand their
experience of what they're going through
wonderful anybody else yeah Oh what
hi
absolutely so it's really hard to have
empathy if you're not mindful if you're
not intentional well
yes yes yeah absolutely yes ah beautiful
to listen well so wonderful so those
definitions are hanging in the air as we
move forward
museums roles as community cornerstones
and the related subject of museums
ethical responsibility to serve all
visitors with empathy are two subjects
near and dear to my heart you've heard
I'm an art historian by training I've
spent most of my career as a curator and
museum educator and I've taught
college-level courses in art history
Museum Studies visual studies so the
ways in which viewers and objects
interact with each other and the ways
most importantly in which museums can
enrich and deepen those interactions
have always been a primary concern to me
that's both in my scholarship and in
everyday practice in my encounters with
visitors and with objects I want to
begin the conversation today with a case
that has been in the news a lot recently
okay you already know about it well
we'll see so for those of you who don't
know about it this is a controversy
surrounding a piece called scaffold a
work by the LOS angeles-based artist Sam
Durant and I'm showing you here and
we'll show you a succession of
photographs of the various installations
of this piece it was installed first in
several sites in Europe there is a
photograph of the whole piece and now
you're walking up one of those sets of
stairs that you saw and you have reached
a platform and this of course is a
includes a photograph showing people
inhabiting the space of this sculpture
just about a week ago the
LA Times round a story in its Arts and
Culture section that opened this way a
controversial sculpture inspired by
gallows used in prominent US government
executions including the mass execution
of 38 Dakota Indians in Mankato
Minnesota in 1862 will be removed from
the sculpture garden at the Walker Art
Center in Minneapolis and ceremonially
burned after generating an outcry among
members of Native American groups the
sculpture had previously been erected at
the document exhibition in Germany in
2012 and Jupiter Artland
in Scotland in 2014 the piece was set to
be one of the new featured works in the
Minneapolis sculpture garden a public
art park that has been under renovation
since 2015 and was originally scheduled
to reopen June 3rd the crux of this case
this is my voice coming back the crux of
this case has generally been situated by
commenting by commentators within the
discourse of appropriation questioning
does an artist from outside a particular
racial or ethnic community have the
right to appropriate that community
stories and retell or comment on them so
for example the New York Times published
an article with the headline Emmett
kills coffin a hangman scaffold and a
debate over cultural appropriation but
it seems to me that at its core the case
of scaffold is more fundamentally about
empathy among human beings and the
responsibility of a museum to fulfill
its obligations at the community
cornerstone scaffolds artist Sam Durant
himself indirectly suggestive in a
statement he posted to the Walker Art
Center blog
Durant writes I made scaffold as a
learning space for people like me white
people who have not suffered the effects
of a white supremacist society and who
may not consciously know that it exists
it has been my belief that white artists
need to address
use of white supremacy and its
institutional manifestations White's
created the concept of race and have
used it to maintain dominance for
centuries White's must be involved in
its dismantling however your protests
have shown me that I made a grave
miscalculation in how my work can be
received by those in a particular
community in focusing on my position as
a white artist making work for that
audience I fail to understand what the
inclusion of the Dakota 38 in the
sculptor could mean for Dakota people I
offer my deepest apologies for my
thoughtlessness I should have reached
out to the Dakota community the moment
that I knew that a sculpture would be
exhibited at the Walker Art Center in
proximity to Mankato so 15 years ago the
Board of Directors of the American
Association of museums now the Alliance
passed a museums and community
resolution declaring that museums are
community cornerstones they are cultural
symbols and contributors to community
enterprise and providers of educational
experiences they are treasured places
where memories are created and shared
but museums can also transform the way
people view the world they foster
lifelong learning and encourage the
expression of differing points of view
these strengths accord museums the
opportunity to assume an expanded civic
role in society the list of operating
principles elaborated further that
museums are defining new relationships
with communities based upon expanded
mutual understanding recognition of
common concerns and interests and a
desire to collaborate for the benefit of
the community collaboration between
museums and communities requires sharing
creativity vision responsibility and
resources then just a little more than a
year ago the Alliance announced a new
strategic plan promoting diversity
equity excessive
ability and inclusion in all aspects of
museum structure and programming this
four-year plan provides the following
definitions for diversity and inclusion
so diversity the quality of being
different or unique at the individual or
group level this includes age ethnicity
gender gender identity language
differences nationality parental status
physical mental and developmental
abilities race religion sexual
orientation skin color socioeconomic
status education work and behavioral
styles the perspectives of each
individual shaped by their nation
experiences and culture and more and
then inclusion diversity always exists
in social systems inclusion on the other
hand must be created in order to
leverage diversity an environment must
be created where people feel supported
listened to and able to do their
personal best let's listen to that again
so people feel supported they feel
listened to and they feel able to do
their personal best I share this with
you to emphasize the point that you're
already aware of I'm sure that the
organization that represents museum
professionals and accredits museums
throughout the United States has for
more than a decade prioritized the
functions of inclusiveness and community
engagement among its numbers so
inclusiveness is equity it's empathy and
we'll get to the dignity part so
sticking with scaffold just a little bit
longer
it's against this backdrop of museum
standards and ethics that we hear the
voice of Kate being a Dakota woman and
historian who works as a community
liaison for the Minnesota Historical
Society being has said of the scaffold
controversy I don't think the Walker or
the artist took into consideration
what kind of impact a structure like
that would have on a community of people
who have been impacted by historical
trauma Olga V so director of the Walker
Art Center sounded a strikingly similar
note after a mediated agreement was
reached by the Dakota elders the museum
the artist and other parties to this
case and she wrote there's no question
that the Walker's process in placing the
sculpture in a Minneapolis sculpture
garden with flawed I apologize that we
were not sufficiently aware of the
implications of its placement or
sympathetic to the pain and suffering
that it would elicit we are deeply
deeply sorry and pledged to be better
stewards of our relationship with
communities going forward in other words
it seems reasonable to conclude that in
this case and with no ill intent which
is important to say the Walker Arts
Center neither demonstrated the expanded
mutual understanding recognition of
common concerns and interests and a
desire to collaborate for the benefit of
the community that was enshrined in the
communities and museums resolution nor
did it create an environment where
people feel supported listen to and able
to do their personal best okay at this
point you are probably thinking to
yourself have I taken a wrong turn
somewhere and gone to the wrong
conference what what does any of this
have to do with equity and empathy in
museum programs for people living with
dementia some of you are no doubt
familiar with a slogan that is
ubiquitous throughout the disability
community nothing about us without us
it's a slogan that rejects a condition
of perpetual exclusion not being heard
or seen not being valued not being
permitted let alone assumed to speak for
oneself it's the condition that
underlies the protests that have
resulted in the dismantling of scaffold
and it's one of the conditions
concomitant with living with a dementia
diagnosis in today's world and this I
want to say is the fundamental
connection between the case of scaffold
and the program's
services that you all commit to every
day a little bit about art were a small
mid-atlantic nonprofit that offers
opportunities for self-expression and
the rebuilding of self-esteem to people
with dementia and their care partners
through interactions around arts and
culture based programming I founded arts
Philadelphia in 2013 on the conviction
that people living with dementia should
be accorded the benefits of well-being
and quality of life that others enjoy
kind of a no-brainer
we are committed at arts Philadelphia to
supporting and celebrating people with
dementia and their care partners as
valued members of our wider creative
community one of our regular program
participants was interviewed last year
on National Public Radio about his
experiences of living with dementia Carl
D is a retired physicist diagnosed with
Alzheimer's in 2014 he describes
analyzing his growing inability to draw
a clock or to use clocks to tell time
and then retraining himself to tell time
based on his deconstruction of the
layers of meaning embedded in a clock
face Carl's capacity for imaginative and
complex reasoning it's still very much
in evidence as he says while he may have
retaught himself how to read a clock
there is no path back to when he could
take such skills for granted he can only
focus on moving forward building on his
abilities that persist it's often
assumed that people with dementia are
incapable of acquiring new skills or
knowledge we of course know differently
Carl embodies the capacity for finding a
way forward that makes meaning in and of
his post-diagnosis existence this
paradigm shift from incapacity to
capacity from dead end to a way forward
is the basis for the collaboration that
Jessica mentioned a new collaboration
between arts Philadelphia and Thomas
Jefferson University which if you don't
know that is one
the country's most vulnerable medical
schools our Philadelphia SPRO grams and
museum galleries are becoming a proving
ground through this collaboration for
how profoundly we can realize that
paradigm shift in art suggests and arts
and dementia mentoring initiative the
medical and other healthcare profession
students from across the university are
learning from a new cohort of mentors
people living with dementia and their
care partners the promotional blurb we
used for the program to attract mentors
describes it in this way do you ever
feel that if your doctor had time to get
to know you better she would be able to
better care for you Thomas Jefferson
University and arts Philadelphia have
launched a new program together and we
hope you'll be a part of it through our
suggests a Jefferson student will have
the chance to spend time getting to know
you or your loved one better as a person
you will have the chance to mentor that
student about what it means to you to
live with dementia art will be the
vehicle that brings you together and
together you may well change forever the
way things work it's a little
overdramatic but there you are so what
does this program seem to mean and what
might it argue for people living with
dementia and for their care partners
there has been extensive research and
much written in the last decade
regarding the various ways in which
people across the globe who are living
with dementia define quality of life a
number of studies have specifically
focused on the role of dignity
preservation as a prime contributor to
quality of life for instance van Gannett
at El noted in 2014 that a number of
qualitative studies have indicated that
the way in which individuals with
dementia are treated by others has a
significant impact on their experience
of the disease and that the views of and
treatment by others can perhaps be seen
as the primary cause of the loss of self
self-esteem a 2010 study by hagas dot at
all assessing norwegian nursing home
residents experiences of dignity by
means of interviews with residents
living with dementia yielded recurring
theoretical themes relating to dignity
such as dignity related to confirmation
dignity related to freedom dignity
related to belonging one interviewee
declared the most important is that they
listen to what I have to say the study's
authors conclude the reason why we often
think that persons with dementia lack
the ability to make autonomous choices
in their daily life may be because we
often see the diagnosis with all the
problems that follow the diagnosis of
dementia becomes the master status of
the person not being seen as a person or
only being seen as a member of a group
for instance number of a patient group
may be experienced as violation of a
person's dignity to avoid this threat to
dignity we should to a greater extent
ask the persons with dementia what they
think is important in order to live a
good life and see them as experts on
their own lives we should confirm the
person and his or her individual
identity which exists behind the disease
I just want to bring this slide back
because you may hear echoes of the
strategic plan in these studies
remembering that feeling supported
feeling listened to feeling able to do
one's personal best there are
connections here it is against the
backdrop of an indirect response to the
research regarding dignity preservation
and other crucial quality of life
factors defined in large part by people
living with dementia and their care
partners that we've designed our
programs in general and arts at Jeff in
particular in relation to which we
assess the program's efficacy and impact
and I just want to show you a few more
slides from the program to give you a
sound
of what it looks like so this is a
one-on-one conversation between a mentor
and her student in some cases we do two
on two if the Care Partner and or the
person with dementia feel more
comfortable mentoring together than both
of their students fit with both of them
in this case Len and Eve Eve
is entering into perhaps late middle to
early late stage and so she had
difficulties talking sometimes other
times she sneaks in full beautiful
sentences it's amazing and Carl again
holding forth with his students so the
insights of our participants above all
will tell us where we need to focus our
efforts now and in the future I'm
including here some documented responses
from studies that have taken place in
England Paul kamek has done a great deal
of work looking at the benefits for
museums caregivers and people living
with dementia of gallery based programs
like the ones we've been talking about
Paul quotes in a couple of studies that
he's done with colleagues I was treated
so well at the Art Gallery it made me
feel I wasn't a dream I've never been
made to feel this welcome in healthcare
or social services and quoted later in
the study I was very conscious at the
gallery that we were people working
together and were treated as equals and
not as a person with a memory problem
but as two people with something to
contribute and that was a good thing the
third quotation is from one of our
program participants she's a Care
Partner for her father and she writes I
feel so lucky to be able to participate
in these museum programs alongside
everyone those with the so-called memory
impairments only enhance my experience
I've learned so much from the entire
group that I'm continuously blown away
by the experience and a few
comments from mentors about their
experience of art suggests it's
difficult to have meaningful
communication that we can share anymore
looking and talking about the art we
were able to talk like a couple again my
wife really liked her student and I
really felt that she was really helping
him and contributing to others again his
wife was an emergency room nurse and she
now has primary progressive aphasia one
of our mentors with dementia said I
think our students got a lot from it on
how to evaluate all aspects of a
patient's life not just the diagnosis
and one of the Care Partner said I only
see good coming from this and then the
students or just as remarkable as their
mentors
say it gave us an opportunity to see
people who have dementia as more than
just their condition I think in a busy
clinical setting it can be all too easy
to see a dementia patient for just that
a dementia patient but I think because
of this program will all be very quick
to recognize dementia patients as people
who had quite meaningful lives and still
have a lot to offer and another student
writes this program has given me so much
to think about and so many valuable
lessons from the mentors ultimately the
issues we've been considering this
afternoon and really throughout this
superb symposium are simply put issues
of honoring personhood and as I bring
this to a conclusion I want to mention
the work of Michael KITT would KITT
would was an ordained priest to start
with became a psychologist professor at
Bradford University in England and he
was actually he's been credited with
being the first to inaugurate the term
person-centered care in relation to
people with dementia so a person of
impact in our fields so he writes
in one of his most famous books in
dementia many aspects of the psyche that
had for a long time been individual and
internal are again made over to the
interpersonal Neal you memory may have
faded but something of the past is known
identity remains intact because others
hold it in place
thoughts may have disappeared that there
are still interpersonal prophecies
feelings are expressed and meet a
validating response and if there is a
spirituality
remember you can ordained priests it
will most likely be of the kind that
goober describes where the divine is
encountered in the depth of I Val
relating now for those of you to whom
that sounds a little bit like
gobbledygook the I thou versus I it
dichotomy is a matter of personhood
versus object hood so in an either
relationship the attitude of the eye to
the vow is that it is an equal
relationship the other in the
relationship is fully acknowledged the
relationship the partnership is an end
in itself and not a means to some other
end some thing to be used the I it
relationship on the other hand you see
where this is going in that kind of
relationship the attitude of the eye
towards an it is more or less the
attitude of an eye towards an object an
object that is separate not an equal
part of any kind of relationship and to
be used either used or acted upon so you
can see I think how deeply this relates
to the issue of how we treat people
living with dementia and how their care
partners treat them and how they treat
their care partners at the beginning of
my talk I was privileged to introduce
you to Carl the retired physicist NPR
interview
we beloved husband of Susan a newly
emerging artist that's a whole other
story and a person just trying to live
his life meaningfully and navigate the
way forward with dementia it's Carl who
gave the talk it gave this talk its
title and it's Carl who helps me to
bring it to a close
Carl reminds us all of us that our
programs our institutions must be
dedicated above all to ensuring that we
treat those we serve with equity and
empathy and that we honor their dignity
or taking us back to scaffold in the
words of filmmaker and director
Sheldon wolf's child one of the most
vocal Dakota protesters of the Walker
Art Center installation and a
great-grandson of one of the Dakota 38
who's hanging it memorialized we need to
understand that we have to look at each
other as common human beings from the
heart so just before we close I want to
resize something that I think Laurel
brought up in her talk yesterday and to
revisit one more question and that's the
question in museums whose responsibility
is it in the end to ensure equity and
empathy
yeah and I'm sure all of us yeah well
actually yeah the restaurant
imagine a restaurant that does not see
someone because they're acting out or is
not willing to seat someone in a place
that is going to make him or her more
comfortable and I think probably all of
us who have tried to make the case for
our museums of the importance of this
kind of work have encountered some
roadblocks in these various areas but of
course it has to be all of the above
there we go
this was a very short talk because we're
all brain dead at this point so I'm
happy to take any questions you have or
to tell you more about the program but
thank you a lot of people come to your
final
and it's one of our challenges when we
first started doing programs we actually
got referrals from and memory and if the
Pend every counter we should who were
fault
then started sweating by work also one
of the couple to become regulars in the
program the wife went back to her
support group and she happened to be
three at the time and joke bickerness I
really want to be tired because she
dropped with us and in some ways that is
the best way to get program participants
become it much easier to trust
but as you can imagine you know in in
Greater Philadelphia actually
Philadelphia along I think the current
statistics are and 100,000 people with
outcome not 129 so yeah huge and right
now at our outside limits or certainly
not 50 so part of the challenge is we
are an organization I do motive
and I have thanks
an almost full-time outreach and
volunteer but there's only so much we
can do we do have to so that's one wall
that goes back to that issue of
sustainability 15 the other problem is
how do we reach all of the nearly $200
and that has been a continuing challenge
from one of the new the benefits of the
Arctic chef program that I did
is network whom you probably want to do
that program if never done folks have
never done anything else we start on
multiple but is also
so it is something that we are working
on restarting to focus on in connection
with much more traditionally underserved
you know around but ours are generally
populated with people who are
middle-class too and this is not in any
way such that they don't have their own
economic needs but for people who are
living in disadvantaged community
communities of color where the stigma
are even more damaging and perfuses you
know that we are approached and we're
starting to make connections or Latino
community people to America we're going
in we believe very deeply that we
or from community so we need to finish
credible partnerships
help off the road drop very well yes how
did you make connections for the other
service operation so we have actually an
entire ritual by but in recent months we
have had health care centers and other
social service centre reach out so there
is a health care center in ability they
invited me to come introduce our program
and the director of programs at the
center will translate
and it was probably engaged they started
that every nothing in volunteer how we
get this in our is so they did open in
crisis or budget invited the pen memory
center have which again our research
partners has a position dedicated to
diversity and inclusion and she has been
amazing so is
but when they actually get there
in a Philadelphia area
there's our fish are creatures works at
all our Beach of they're actually art
reaches throughout the country okay I
certainly know that Philadelphia's but
we won the art features and exhibition
is a wonderful mission the idea is to
provide equally discounted access to
cultural artistic any kind of program in
New York that someone might 1 to 10 and
because of disability are yes pretty
consistent so most I would say a good
chunk of the area work with art reached
provide discounted addition to such an
opposition to
general admission damn theater yes yes
so that is an incredibly important
people access to best day ever since
attending admission wrote it is badly
even in the world of people all working
toward something working for a noble
shop and unfortunately in this
particular
that
but means we we exist without
partnerships
that is not a career
fascinating business setting where you
are just now very textured wonderful and
my other question is you experienced
mentor definition that sure sure so what
you see here is a count way of programs
and progress so the way here which is
wonderfully symbolic of what you do is a
still Enochian magic garden and it is it
is I don't even know where to start
Beauty it is your business it is dual
life in is magically optical and we have
we have been working to form a
partnership for three years now and it's
not for lack of wanting to that it's
kind of business long however neither
garden has become one of the sites for
our art the jet program so all of the
blue and green anything with bright
colors is present is measurable yes
and the data are being painted on
outside porches actually up with your
Art Museum which is our long drive you'd
be a partner
program usually conversation being in
the gallery um but we also sometimes do
Argentinian sale and that particular
banner is evidence of something that we
do every year we have an animal
opposition's work done by people in our
organization and in the lead us we have
reconsidered the community where we we
create some sort of large-scale project
that is a good way to involve a group of
six to ten people with dementia that's
generally living in the community and
volunteer to the community who haven't
volunteered to them if the one day
volunteer demands that extravagant and
so that's tanner two years ago our large
community engagement project was
painting 90-foot banners
and then paint and colors of the Arts
logo and really if we if we gave a
problem all which we didn't ask people
to pick out the brussels and go
the only property roses with what was
join the fight
so that's and then there's a hair
community settings this is also that
would be a watercolor and waterful
proximity and then mom is just jefferson
classroom so we we go wherever and you
need in response to your question
governmental so our premise for art's
adjust is the body literally wanted to
turn upside down the general hierarchy
of patients doctor now these are not yet
doctors but they are first-year medical
students second-year sometimes they're
here and they're going to be done so in
order to participate in this program
they essentially have two operations to
leave their doctors at the door and to
come in knowing the victim and that the
authorities in this site are there is
dementia for little remember and I have
to say each other but I have to say
Jefferson has been teased and it is this
program is part of an overall effort
that they're making to try to figure out
how to put the empathy back into because
the data if Jefferson is the originator
of the empathy scale and the doctors dr.
bull Jobs who created that study for
years whether how long
but earlier and that is not just a
Jefferson stupid that throughout the
country so they are doing a a question
complete to the question 2004 matter the
congressman how to complete a time zones
with economic questions for multiparty
want to do guitars those were
participating in the program it's not
the knackers not part it also plays
where is this is made of doing model
design and and where that is is that
really thick wait I'm not talking
somebody that did not believe any other
very hot as we're helping you we ignore
the guys you are in you are help you my
headline Aaron apparel all those are
fair question so and where you prefer
okay so let me start and go backwards
probably by the time I go back that
you're going to remind you what
reflection look then the reasons we do
not charge is because we know and
they're funny hood data to baptism that
people living with dementia
have if not financial hurdle of the
weather they are surrounded by one girl
after another some of our participants
could not afford to pay can't even
afford to the park so if it were someone
where they have departmental treatment
in home so so I essentially as the power
of an organization made the decision
finances are not did you make a good
point
how is that how is that equity if you
know everyone else out there pain it
turns out that I was actually kind of
savvy and didn't have a clue that I was
because I was paying probably at least
50%
of our program purchase make individual
solution and deputy apartment right here
yes they make individual donation and in
the end and we denote individual
donations are often Iranian so in the
end by burning their trust and by
showing empathy for situations in the
end it made them feel tremendous
ownership program so in terms of
sustainability
maybe we expose our largest rigor but
not our first year our budget zero it
would be I did ever think and I did it
on a volunteer basis second year our
budgets 30,000 last year it was more
than twice that and this year
that's not all because of individual
deletions with 50% so I think I think in
terms of sustainability you know with
actually another one we're talking about
this about how do you how do you make a
program that biased nature has to be
intimate and small to do with substitute
how do you make that scalable how do you
make it sustainable and I say that if
you remember who it was that I think the
answer to that is do what we're doing
here it has to be across the sector it
has to be that we are all generous
enough with each other
that number one you know none of us can
handle I mean not a single institution
before birth and in each case you figure
out what that is and it's not it's not a
union in the bottle but a number en
[Applause]