12:01:39 [Music]   
»AMY SHUMAN:  Welcome, 
12:02:35 everyone you just heard a song from the 
Sesame Street  50th anniversary celebration recording. 
12:02:37 Phyllis May-Machunda's daughter chose this song
12:02:45 for us to hear as we begin 
this webinar. We are so glad
12:02:49 you are here. Hello, I'm Amy 
Shuman, current president of 
12:02:51 the Fellows of the American 
Folklore Society.  I'm a white
12:02:53 , Jewish, older woman with 
brown curly hair and glasses, 
12:02:55 I'm wearing a red 
12:02:57 shirt, a scarf, and silver 
jewelry.  Behind me there is a
12:02:59 bookshelf 
12:03:02 and a blooming Christmas 
cactus.  I'm a Professor of 
12:03:04 Folklore at 
12:03:07 the Ohio State University 
where 
12:03:12 I also teach disability 
studies.  Welcome, everyone to
12:03:16 the third AFS Fellows Webinar.
12:03:18 The Fellows Executive 
Committee, Mary Hufford, 
12:03:22 Robert Baron, and I, designed 
today's Webinar as 
12:03:25 the first of a 3 part series 
on 
12:03:31 Interrogating the Normal.  The
second Webinar in this series 
12:03:33 on alternative medicine 
12:03:36 and healing and will be held 
in November.  Part three:  
12:03:39 Folkloristic engagements with 
ecology will be held in spring
12:03:41 2023.
12:03:44 Each of our Webinars has been 
designed to build on and 
12:03:46 create 
12:03:51 intersections among 
folklorists and others.
12:03:55 Thus today's Webinar, 
Interrogating Normality:  
12:04:00 Folkloristic Engagements with 
Disability, is co-sponsored by
12:04:03 the Society for Disability 
Studies, The Disability 
12:04:07 Studies Graduate Student 
Association at 
12:04:10 The Ohio State University, and
the Office of the ADA 
12:04:13 coordinator at OSU, in 
addition,
12:04:17 of course, to support from the
American Folklore Society.
12:04:19 We are very grateful to 
Jessica 
12:04:22 Turner and Meredith McGriff 
for 
12:04:25 their enormous help.
12:04:30 We are also grateful to our 
ASL interpreters.
12:04:44 And to Christal Shew with 
Archive Captioning.  You will 
12:04:48 find captions link at the 
bottom of your screen.
12:04:50 Please put your questions for 
the participants in the Q and 
12:04:52 A.
12:04:55 You are also welcome to use 
the chat function.
12:04:59 This Webinar will be recorded,
and we'll make the recording 
12:05:02 available through the AFS 
website as soon as possible.
12:05:11 Next Friday, a week from today
, from 12-1:30, we'll hold 
12:05:16 informal salon discussions 
about today's Webinar.
12:05:19 For each of our prior webinars
, 
12:05:22 we've held salons with about 
10 people, and those have 
12:05:25 turned out to be a wonderful 
opportunity for everyone to 
12:05:27 share ideas.
12:05:30 Edited essays based on the 
first
12:05:33 two webinars, along with 
12:05:37 summaries of the salon 
discussions, are now in the 
12:05:39 process of being published.
12:05:48 Today's webinar will be 
published as a special issue 
12:05:53 of the Journal of American 
Folklore. We will put the sign
12:05:57 up for the salons in the chat 
at the end of this webinar and
12:06:02 you will be able to sign up to
participate also on the AFS 
12:06:06 website. Some of the salons 
will be more general responses
12:06:11 to today's webinar and will 
also include a few special 
12:06:17 topics.   For example, we 
might have a salon on race 
12:06:21 disability in folklore or 
folklore of children with 
12:06:25 disability or the role of 
memoir and personal narrative 
12:06:30 in disability. Or disability 
huge man rights policy in 
12:06:34 folklore.   Please use the 
chat to propose particular 
12:06:37 interests and we will post the
topic that is we decide on by 
12:06:42 the end of this webinar.   One
of the salon's will have an 
12:06:45 ASL interpreter and the 
registration form will give 
12:06:49 you the opportunity to 
indicate that whether you want
12:06:53 to be in the salon with the 
interpreter and any other 
12:06:56 access needs. We welcome your 
suggestions for making our 
12:07:02 webinars more accessible. 
Today after each of the 
12:07:06 presentations, I will provide 
a brief summary in plain 
12:07:10 language. We will have three 
presentations and then the 
12:07:14 presenters will be joined by 
three disabilities studies and
12:07:17 folklore scholars who will 
participate in a round table 
12:07:23 discussion followed by 
questions you pose in the Q 
12:07:29 and A. So, what does it mean 
to inter gait the normal?  
12:07:33 People with disabilities often
find they are designated as 
12:07:38 not normal and disability 
study scholars and activist 
12:07:41 have opened up a conversation 
about what counts as normal 
12:07:47 behavior, practice, and bodies
. In addition, to activism and
12:07:51 color ship about disability 
globally and nationally. 
12:07:55 Disability studyings has 
identified both how different 
12:07:59 bodies often refer today as 
body minds to critique the 
12:08:03 ideas that bodies and minds 
are separate and how these 
12:08:06 different body minds are 
represented and how 
12:08:10 nondisabled people respond to 
what they perceive as 
12:08:14 difference. The responses from
nondisabled people have 
12:08:20 included stigma, pity, and 
staring and also the seemingly
12:08:24 positive but harmful response 
of considering people who over
12:08:29 come their disabilities or who
do very ordinary things to 
12:08:34 be inspirational.         Also
significantly disability 
12:08:37 studies criticized and often 
rejects what is call it had 
12:08:42 medical model, the dominant 
narratives that govern's 
12:08:45 people's lives by consigning 
them to diagnosis that does 
12:08:50 not take into account how 
people actually live.         
12:08:55 Disability plays a more 
implicit role in folkloristic 
12:08:59 thinking and one of our goals 
today is to rethink some of 
12:09:07 the implicit conceptions that 
drive folklore. For example,
12:09:12 Hymes con communicative 
competence a corner stone of 
12:09:17 folklore studies contains 
implicit evaluations of what 
12:09:23 counts as competence and who 
can perform compentently.   
12:09:27 Folklorist bring several 
things to the table in 
12:09:31 dismantling the normal 
including our interest in very
12:09:35 knack particular and every day
practices and culture
12:09:39 that is operate on the 
dominant discourses and 
12:09:44 practices. My work was 
profoundly by my teacher whose
12:09:49 book stigma the management of 
spoiled identity argues for 
12:09:53 the social model of disability
the idea that stigma does not 
12:09:58 adhere in particular practices
or bodies but rather is a 
12:10:02 designation made by others who
assign people and their 
12:10:08 practices, ideas and bodies to
the margins. Folklore is doing
12:10:13 either no graphic work in 
local communities can
12:10:16 contribute to our 
understandings of how 
12:10:20 identities get spoiled and how
people recuperate their status
12:10:24 within a community or create 
new communities of fellow 
12:10:29 travellers who inter gait the 
normal. I think I was blocking
12:10:31 my
12:10:36 camera, sorry.         Who 
inter gait the normal on their
12:10:40 own terms using their own 
genres of artistic performance
12:10:45 . These are some of the ideas 
we will consider today and now
12:10:55 we will turn to our 
presentations. Anand
12:11:51 Prahlad
12:11:53 
»ANAND PRAHLAD:  Thank you am 
12:11:59 my to introduce myself 
visually I am black, I am 
12:12:05 wearing a red shirt and I am 
wearing an rasta hat covering 
12:12:14 my dread locks which is red, 
green and gold. Writing 
12:12:18 outside the fairy tale voice 
that irreverent ruptures I 
12:12:25 will begin with a story from 
1991. I received a call from a
12:12:27 doctor at the
12:12:32 university hospital who had a 
patient who was a black woman 
12:12:38 from the deep south who needed
to have surgery, but she
12:12:46 refused the surgery because 
she believed that she had been
12:12:49 fixed. That a fixed had been 
placed on her.   The doctor 
12:12:56 asked me if I would sort of be
a go between as far as the 
12:13:00 communication between the 
patient and the medical staff 
12:13:08 and if I would try to move the
woman toward being more 
12:13:10 receptive to the idea of
12:13:13 getting the
12:13:17 surgery.
12:13:24 In that moment I saw an 
exciting avenue for folklore. 
12:13:29 But these impulses would have 
to wait. As far as the 
12:13:32 expression don't change horse 
ins the middle of the screen 
12:13:36 and I was already on the way 
to establish myself in 
12:13:41 folklore studies to publish 
and get tenure
12:13:44 and gain the securities that 
would come with promotion and 
12:13:49 rank. I never forgot that the 
doctor, that patient or the 
12:13:52 possibilities that encounter 
suggested over the past 10 
12:13:56 years, I have been able to 
move more in that direction. 
12:14:01 Since publishing my memoir. I 
have noted primarily in 
12:14:05 disability studies doing 
readings, workshops and 
12:14:11 writing almost entirely in 
this vein and I have been able
12:14:15 to find a joy that sometimes 
alluded me in folklore studies
12:14:20 . This does not mean that I 
have abandoned folklore, quite
12:14:25 the contrary. In fact one of 
my current book projects 
12:14:29 focuses on folklore in 
disability, health and 
12:14:33 humanities. But in thinking 
about how to bridge the two 
12:14:36 concentrations, disability 
studies and folklore. Several 
12:14:43 issues come to my mind. One is
the issue of voice, language 
12:14:47 and creative write we focus a 
lot on issues of voice, 
12:14:55 language, different registers 
of language, on awe dense and
12:15:03 author intent.   And emotions 
and on the states of 
12:15:07 consciousness of others be it 
characters or readers. On 
12:15:12 their emotions and 
psychologies, on rhetorical 
12:15:16 conventions and innovations. 
On the craft of what we do. 
12:15:23 The art of it. On how we write
positions us relative to well,
12:15:27 many things and so doing, we 
are infinitely concerned with 
12:15:33 issues of race and gender for 
example with politics in 
12:15:38 history, philosophy, the 
nature of producing text that 
12:15:46 become commodified on the one 
hand but gait ways in the sub 
12:15:53 PWHRAOEUPL. Emotional anchors,
spiritual and intellectual 
12:15:55 manna.
12:15:57 Revelations and e
12:16:01 PEUF anies in folklore studies
by contrast we envisions our 
12:16:04 missions in quite different 
terms the voices registers and
12:16:10 styles of our writing have 
been largely predetermined. We
12:16:13 are taught not to see 
ourselves has members of 
12:16:18 communities often based on 
emotional needs, psychological
12:16:23 health and well being, and 
political identities but as 
12:16:28 members of the academy.   
Members of an
12:16:33 academic discipline who 
studies such communities. But,
12:16:37 why is this difference so 
important?          A second 
12:16:40 issue is the marked did I have
REPBS
12:16:44 between the general 
orientation of the feel of 
12:16:48 folklore and fields such as 
disability studies that are 
12:16:52 concerned with issues of 
disability, health and 
12:16:55 medicine.  In contrast to 
folklore studies disability 
12:17:00 studies is rooted in political
and social advocacy in what 
12:17:04 has been refer today as 
identity politics. These are 
12:17:08 core elements that attracted 
me personally to the field and
12:17:12 that he me to feel at home in 
it.   But, to understand their
12:17:18 importance of this orientation
, one has to appreciate first 
12:17:23 the historical oppression and 
daily trauma of being a 
12:17:27 disabled person in an ableist 
society.   One must accept the
12:17:31 most heart felt understanding 
of this oppression and 
12:17:34 willingness to publicly 
advocate for the rights of the
12:17:39 disabled is for many a major 
criteria in measuring how they
12:17:43 perceive and relate to other 
people, organizations and 
12:17:45 academic
12:17:50 disciplines.         In my own
case, for example, I decided 
12:17:54 that I had given enough or 
more than enough of my life 
12:17:59 work that required mask and 
accommodating to ableist 
12:18:04 expectations and norms and 
that didn't already have the 
12:18:07 scholarly and creative frame 
works for directly addressing 
12:18:12 the concerns of the disabled. 
Rather, I decided to put my 
12:18:15 energy and time into projects 
and pursuit that is would help
12:18:20 to validate the experiences of
disabled people. To empower 
12:18:24 them in whatever small ways 
that I can. And to illuminate 
12:18:28 some of their realities to 
others who are interest ed in 
12:18:34 better understanding them and 
in being political and social 
12:18:38 allies. Of course, being 
retired helps as I no longer 
12:18:43 have any masters to serve. 
This brings me to a discussion
12:18:48 of my own memoir. The secret 
life of a black [word?]   The 
12:18:52 greatest break through in 
writing that memoir was to 
12:18:56 findly cochlear away enough 
layers
12:19:04 clear away enough and a voice 
is not just a tone, it is an 
12:19:08 attitude. The embodiment of 
experiences and the ways of 
12:19:12 perceiving and processing the 
world around one. It is the 
12:19:17 personal as well as the 
community vibe one carries 
12:19:24 with one. It is the resonances
of values just as a dance to 
12:19:28 music is the residence 
innocence of rhythm, timing 
12:19:33 and sound. Those who have read
the memoir may have noticed it
12:19:38 flip it is script that instead
of being a folklore professor,
12:19:42 scholar writing about a 
disabled subject or object, 
12:19:47 the memoir is the disabled 
subject offering critical 
12:19:49 observations.
12:19:54 I have taken the nothing about
us without us seriously and in
12:19:57 the memoir in subsequent 
writing I have chosen to 
12:20:02 employ a narrative voice that 
is outside of convention. One 
12:20:07 that center it is speaker's 
experience of disability while
12:20:12 platforms of academic 
discourse become more like 
12:20:16 satellites rather than home 
planets as such the voice and 
12:20:21 writing style represent a 
rupture, a dissonance in the 
12:20:24 relationship to customary 
written traditions and instead
12:20:30 of critiquing disability, the 
work inter gaits proper and 
12:20:36 academic discourses in which 
disabled representations are 
12:20:40 found. My work is then 
envisioned as a representation
12:20:43 mode of validation and
12:20:48 empowerment as text that 
resinates with and speaks 
12:20:51 specifically to those whose 
lives are centered in neuro 
12:20:56 diverse and disabled universes
.   Some of the chapters are 
12:21:00 specifically concerned with 
the
12:21:04 spaces within schools 
including elementary, high 
12:21:07 school and various 
universities that I attended. 
12:21:12 For example, the title of the 
chapter the white castle is 
12:21:18 intended to suggest that the 
predominately white school
12:21:22 setting is for a black artist 
surreal.
12:21:25 Like being in a world
12:21:28 found in brother
12:21:34 Grimm's fairy tail. This is 
instead tended to hit on some 
12:21:37 of the important life 
negotiations that came with 
12:21:42 entering the academic 
profession and is a fairly 
12:21:47 detailed black artist critique
of academia. One way of 
12:21:51 looking at the memoir is to 
consider the many personal 
12:21:54 stories as a form of
12:21:58 ethonography. Although I may 
understand this is beyond the 
12:22:03 boundaries of what might 
consider valid
12:22:08 ethnography. An early version 
of one of the chapters was 
12:22:11 published years ago in
12:22:16 a JAF on creative
12:22:26 ethnography. When the memoir 
was introduction, none of the 
12:22:29 folklorist none of them wrote 
what was the least bit 
12:22:36 positive so none of it was 
used by the press. Relative to
12:22:39 disabilities, interrogating 
the normal is not a small 
12:22:45 thing. To take it seriously 
how ableist perspectives and 
12:22:49 understanding that normal 
really means privileged. That 
12:22:53 it means having a certain kind
of mind and body and carries 
12:22:58 with it assumptions, attitudes
and practices that are usually
12:23:02 so taken from granted that 
they are not even recognized. 
12:23:05 That it means being
12:23:08 enTREFPed in ableist political
and social systems that 
12:23:15 marginalize the disabled. 
Normal needs being able to 
12:23:23 talk, being able to see, being
able to hear.  Not being in
12:23:31 chronic pain. Not being 
publicly shamed, humiliated 
12:23:35 bullied, made fun of, left out
, not being stuck and out of 
12:23:40 luck if the elevator breaks 
down. Not having to take meds 
12:23:45 in order to think clearly.   
Being able to walk into a room
12:23:48 and not being overwhelmed by 
the brightness of the lights 
12:23:53 or the humming of fans or the 
sense that others don't notice
12:24:00 . Not having uncriminalable 
melt downs. Not having 
12:24:05 uncontrollable switches, et 
cetera, et cetera, et cetera, 
12:24:08 et cetera. In concluding I 
would like to pose a few 
12:24:12 critical questions.   
Questions that individual 
12:24:17 folklorist will have to decide
upon for themselves and 
12:24:20 questions that would be 
productive I believe for the 
12:24:25 entire discipline to consider.
One has to do with intent, 
12:24:30 purpose, goals. It is the goal
to make disabled people and 
12:24:34 communities a more common 
topic of studies will these 
12:24:40 studies be ultimately more 
concern window the issues that
12:24:43 folkloristics have 
historically been concerned 
12:24:47 with than with issues of 
rising from the concerns of 
12:24:54 disabled people themselves or 
is folkloristics interested in
12:24:59 exploring ways of which an 
acute awareness of 
12:25:05 disabilities may reshape the 
field. Is
12:25:10 folkloristics as the public 
sector side of things have 
12:25:12 been engage window
12:25:14 advocate I. For
12:25:18 disability rights are we
12:25:22 proposing to but new wine into
old bottles or the break the 
12:25:28 old bottles and get new ones 
and moving toward a greater 
12:25:33 awareness of disabilities is 
folkloristic proposing to 
12:25:38 embrace disability studies 
along with its core principles
12:25:43 is it proposing styles of 
writing that are outside of 
12:25:50 the generally academic 
rhetorical conventions?  Is it
12:25:54 proposing to include 
nonacademic readers or readers
12:25:58 in the other fields?  About 
the purpose or goals of some 
12:26:03 of its writing and other pro
12:26:07 SKWROBGTs to include for 
example assisting in
12:26:14 policy making or in 
enlightening medical practice 
12:26:18 TPHERs. Ableist foundations 
have shaped its methodologies,
12:26:22 theorys and definitions?      
Will the current book that I 
12:26:27 am working on which makes a 
case
12:26:30 for the SPWRAL role various 
form of TPG played in the 
12:26:33 oppression of the disabled and
in practices within the field 
12:26:36 of medicine be
12:26:43 accepted by folklorist and 
folkloristics and it is 
12:26:45 definitely create
12:26:49 I have writing without
12:26:51 footnotes who is
12:26:56 folkloristics for?  Thank 
12:27:14 you.        
»AMY SHUMAN:  If you have 
12:27:17 issues you would like to 
include in the salon 
12:27:21 especially or questions you 
would like to consider today, 
12:27:28 that you can post them in the 
Q and A. I'm going to offer a 
12:27:34 brief summary in plain 
language. Plan language is
12:27:37 intended for people who
12:27:43 speak and listen without the 
complicated language that we 
12:27:49 use as folklorist. This isn't 
intended to replace what 
12:27:54 Prahlad did. This is to 
intended for those in the 
12:28:00 audience that may be able to 
join us if I summarize in 
12:28:02 simple
12:28:04 act PHRA asked us to think 
about the difference between 
12:28:08 our personal experiences and 
how we think and write about 
12:28:13 them as people who study 
things. When he was writing a 
12:28:17 story about himself and 
publiced a book about it he 
12:28:21 had to think about how to 
write differently. Not as a 
12:28:26 person that studies disability
and folklore. Finding his own 
12:28:31 voice which is his own way of 
talking.  Based
12:28:36 on his own experiences. In his
book, he wrote about being in 
12:28:41 school as a black person with 
autism and he says that when 
12:28:46 we think about what is normal,
we should also understand that
12:28:50 some people have privileges 
that is particular advantages 
12:28:55 that we don't even see. What 
would happen if we paid 
12:28:58 attention to
12:29:01 disability as
12:29:05 folklorist. How would this 
change what we do?    Might we
12:29:14 become more involved in 
disability advocacy. Our 
12:29:19 second speaker is Phyllis
12:29:25 May-Machunda heifer
12:29:29 essay on her experiences
12:29:35 as a parent for folklore 
research and describes how 
12:29:41 responses to ableism have 
begin to for some parents of 
12:29:47 children with disabilities in 
similar ways how racism has 
12:29:53 forged coalitions across 
racial group boundaries. 
12:29:55 Working at that time
12:30:01 intersection of race and
12:30:07 phyllis asks us conceptions of
disability as a burden. As a 
12:30:11 sin or a curse as contagious
12:30:18 and an inferior human 
experience. As our executive 
12:30:23 committee put together this 
webinar, we realized that we 
12:30:26 know several parents including
myself who are parents of 
12:30:32 children with disabilities. 
And we are so glad to have 
12:30:36 phyllis here to help us 
identify these new 
12:30:40 intersections between folklore
and disability I will
12:30:43 turn it over to you.        
»PHYLLIS MAY-MACHUNDA:  I need
12:30:50 to share the screen, please. 
Thank 
12:31:37 you. Thank you. It is a 
pleasure to be here and I am 
12:31:39 still
12:31:44 processing what Prahlad 
offered us. I am
12:31:50 Phyllis I am an older African 
American woman with   
12:31:58 »ss and curly hair. I am 
wearing a hot pink turtle NEC 
12:32:05 and a hot pink patch work 
jacket with hot pink
12:32:08 earrings.
12:32:13 I live in the -- my paper is 
called live not guilty the 
12:32:20 Nexus of disability and care 
giving. And African parental 
12:32:23 care givers critical
12:32:28 observations as a folklorist.
12:32:33 I live in the nexus of 
disability and care giving. I 
12:32:39 am one of the parents of a now
adult daughter who is 
12:32:47 partially and inconsistently 
SRERL. Neuro
12:32:49 diverse, and multiply and
12:32:50 developmentallyvarious. Neuro 
diverse, and multiply and 
12:32:53 developmentally disabled and 
and this journey on this path 
12:32:58 began in infancy and will be 
life long. I began writing 
12:33:03 about disabilities because it 
is my lived parental 
12:33:07 experience and because I saw 
little attention in folklore 
12:33:13 scholarship to the examination
of the world of people with 
12:33:16 disability ins folklore
12:33:24 scholarship. And to the 
stories of their families and 
12:33:27 care givers as part
12:33:35 of those worlds. In my article
complex identifying identity 
12:33:38 through disability 
folkloristic perspectives on 
12:33:43 being a parent and 
experiencing illness and
12:33:46 disability through my
12:33:49 child, that is
12:33:53 Otero and
12:34:08 Martenez-Rivera in their book
12:34:12 theorizing the margins
12:34:15 I use it had lens of
12:34:24 ethnography to describe my
12:34:28 family's SKWRORPB if I with my
daughter.journey with my 
12:34:31 daughter. Experiences of 
disability
12:34:34 by other mothers.
12:34:42 Framing my discussion of those
accounts with folklorist Sandy
12:34:48 Dolby's notion of self-help 
books I observed that these 
12:34:54 are mostly grass roots efforts
by parents to write rich 
12:34:58 counter narratives about 
disabilities of their children
12:35:02 as they navigated the social 
systems they encountered to 
12:35:05 support and meet the
12:35:08 needs of their children
12:35:13 . I added my story to this 
ample body of narratives, but 
12:35:18 I also wanted to look at this 
work through a critical 
12:35:24 folkloric lens and examine how
my family's experience was 
12:35:26 different from these
12:35:30 published stories.
12:35:35 SPHEU scholarly work before I 
encountered folklore studies 
12:35:38 has been to seek and examine
12:35:44 absent narratives. Who row 
mains invisible in our world? 
12:35:49 Whose stories aren't we 
hearing?  So today, I want to 
12:35:52 continue that work and I have
12:35:59 selected three ideas that I 
want to touch on in expanding 
12:36:05 from the published article. 
First, I want to state that 
12:36:10 disability is often more an 
than individual's embodied 
12:36:15 experience. It can also be
12:36:19 social, relational
12:36:27 a [word?]   Experience. An 
experience that is 
12:36:31 intersubjective and even for 
some
12:36:36 [word?]. As we do
12:36:40 treatments on our children
12:36:45 dependeden the impairment and 
degree of involvement 
12:36:49 disability can shape the 
entire family
12:36:53 trajectory in terms of 
opportunities,
12:36:58 experiences of the family such
as, you know, where you can go
12:37:03 and what activities you can do
together.   How can you do 
12:37:08 those activities?  The 
resources and the options 
12:37:14 available to you. And how, you
as a family
12:37:20 are seen and treated. One 
example from our experience is
12:37:23 because of my daughter's
12:37:27 sensory integration 
dysfunction, my daughter was 
12:37:31 unable to eat certain foods or
go to
12:37:34 parties which her class
12:37:38 mates in crowded places like
12:37:46 Chucky Cheese or Space Aliens 
or some of the most popular 
12:37:48 rest
12:37:54 RAUPTs it shapes how she and 
we as a family were
12:37:59 included in school and church 
activities while many places 
12:38:06 had bland foods, we were 
fortunate that our daughter 
12:38:12 has a fairly sophisticated 
pallet. We often eight at 
12:38:16 smaller ethnic restaurants. It
was important we had fun 
12:38:22 experiences as a family, we 
consciously centered our 
12:38:25 activities around where she 
could go and what
12:38:28 she could do.
12:38:31 As
12:38:37 Susan
12:38:41 Kelly notes parents 
experiences of impairment are 
12:38:45 not direct experiences of 
impaired body self. However, 
12:38:53 these mediated narratives of 
disability offer intimate and 
12:38:58 partial disability gained in 
the journey with the child 
12:39:05 through a disabling 
environment. As Prahlad noted.
12:39:09 They are generated out of a 
relationship with a child and 
12:39:13 often are the only window we 
have into the experiences of 
12:39:21 those who are nonverbal or 
partially verbal.
12:39:26 Some parents, often mothers 
can develop difficult REPB 
12:39:31 ideality extended identities 
this is an idea I mentioned in
12:39:35 my article. These
12:39:42 parents [word?] Aspects of 
themselves with that of their 
12:39:47 child. The parent's life paths
becomes transformed in care 
12:39:50 taking and advocacy from the
12:39:56 positionalty of their child.  
Kelly calls it a 
12:40:00 coConstitution of parenting 
identity and the experience of
12:40:03 impairment and the
12:40:09 embodiment of the child. I 
believe this part particularly
12:40:13 happens with children who are 
partially or nonverbal and 
12:40:20 those more intensely involved.
Those with more intensely 
12:40:24 involved levels of impairment 
where communication happen ins
12:40:31 that trusted relationship and 
embodied levels and even a 
12:40:35 mind meld seems to occur in 
the communication require 
12:40:43 today understand what cannot 
be spoken in mutual
12:40:59 ways. So the narrativeings of 
this population of children 
12:41:04 and their care givings are 
absent. Who speaks for those 
12:41:09 that are unable to speak 
verbally or with technology?  
12:41:13 The second idea I wanted to
12:41:16 explore a little bit was
12:41:22 thatted notion of parental 
care giver. Sometimes you 
12:41:26 might think that might be an
12:41:30 oxymoron.  Well the notion of 
care giver seems to be 
12:41:35 redundant when paired with 
parent. Care giving includes 
12:41:37 several
12:41:40 responsibilities and 
accountability that goes 
12:41:45 beyond that traditional parent
. Care givers have 
12:41:47 responsibility for intense 
identifying and amplifying the
12:41:52 voice of the child by 
interesting the interface and 
12:41:57 advocate for the child's needs
as the family encounters the 
12:42:01 social institutions that are 
supposed to address those 
12:42:04 needs and the slide
12:42:07 shows some of those
12:42:11 aspect it is navigating the 
medical, social
12:42:17 services, educational, 
institutions on behalf of 
12:42:21 their child.         I can 
give an example from our 
12:42:26 experience just last week. I 
spent at least
12:42:33 8 to 10 hours trying to find 
out why my daughter was billed
12:42:36 $11,000 for some dental 
surgery for which I had filled
12:42:46 out the paper work, I turned 
in at least 15 forms, and I 
12:42:52 talked to a couple agencies 
before that surgery. As a 
12:42:56 result, it was supposed to 
preauthorized and covered by a
12:42:58 medical
12:43:01 assistance and after reaching 
several answering machines and
12:43:06 calling back several times I 
had to talk with about 10 
12:43:10 different people most of them 
gate keepers at that time 
12:43:14 county and state level before 
I found a helpful person and 
12:43:19 in an additional two more 
calls before I found out the 
12:43:26 charge had been miscoded at 
the hospital. And it will be 
12:43:29 resubmitted but I wouldn't 
find out whether it is covered
12:43:33 for another three months. You 
know, what are the stories of 
12:43:38 the labor of family care 
givers and their encounters 
12:43:42 with these institutions 
imagine having to continuously
12:43:49 put so much effort forward for
such routine things.  Who has
12:43:54 that kind of 
12:44:03 time? 
12:44:06 The
12:44:11 third point is I think a 
consideration of 
12:44:15 intersectionality is necessary
to illuminate more visible 
12:44:22 stories of disability. It is a
theory based in African 
12:44:27 American's women's thought 
that black feminist scholars 
12:44:29 Kimberly
12:44:33 Crenshaw and
12:44:35 pa TREURB I can't 
12:44:42 Hill-Collins are
12:44:48 credited with developing 
intersectional theory asserts 
12:44:53 that people are systematically
positioned at disadvantage or 
12:44:57 advantage simultaneously by 
multiple systems of oppression
12:45:03 through markers of group 
identity and the meanings 
12:45:09 placed on them.   Their race, 
class, gender, sexual 
12:45:13 orientation, religion,
12:45:19 nationalalty, and citizenship 
geographic location and other
12:45:24 identity markers are what are
12:45:31 used. Now, yes, folklore has a
history of
12:45:37 recognizing that people work -
- they work with have these 
12:45:39 identities but
12:45:42 intersectionality goes further
.   Intersectionality 
12:45:47 acknowledges these social 
identities are not merely 
12:45:52 additive they are 
multiplicative. They are 
12:45:58 complex. They are systemic. 
And mutually constituted by 
12:46:00 the
12:46:08 systems of oppression. They 
operate in synergistic 
12:46:10 compounding
12:46:15 dynamic, variable, and 
interconnected ways and the 
12:46:23 reason they do that is in 
order to produce experiences 
12:46:28 defined by differential access
to and control of resources 
12:46:30 and
12:46:37 opportunities.
12:46:41 Intersectionality asks about 
how power
12:46:45 differentials are created
12:46:50 and that's something the 
normative stances of folklore 
12:46:52 has
12:46:55 tended to
12:47:00 ignore. I'm going to offer a 
couple of examples. 
12:47:04 Significant number of care 
givers are from outside the 
12:47:11 family. So who are they?  In 
many cases, they are paid care
12:47:18 givers who are 
disproportionally BIPOC women.
12:47:24 That is black and indigenous 
and people of color women. 
12:47:30 Often immigrant women with 
limited education who are paid
12:47:35 minimum wage often without 
benefits to do this life
12:47:40 sustaining and capacity 
enabling work. What are the 
12:47:45 stories of paid care givers of
people working with disability
12:47:48 and how do their social
12:47:52 positionalties impact their 
experiences of working with 
12:47:55 children?  How do these
12:47:59 positionalties shape their
12:48:06 relationships with children 
with disabilities and their 
12:48:08 families.  What new
12:48:12 understandings can we gain 
from
12:48:22 looking at them?  And their
12:48:30 stories?  A story that came to
me a skilled librarian new 
12:48:33 immigrant woman care giver 
told me when she worked 
12:48:36 through an agency
12:48:41 with a child she was ordered 
around as a servant and was 
12:48:44 treated without respect.   
Feeling she was treated less 
12:48:48 than a white worker would be. 
She stated she appreciated 
12:48:53 working with people that would
value the quality of care she 
12:48:55 provided their
12:48:59 child. The issue with not one 
only
12:49:08 of perceived class but also 
race and possibly gender in 
12:49:13 this case. So this
12:49:18 power point shows a number of 
the systems that could 
12:49:22 intersect and this sort of 
gives a picture of what 
12:49:28 intersection looks like.  It 
is over lapping, interlocking,
12:49:35 and they can be raised up or 
lower down in terms of 
12:49:37 importance
12:49:42 depending on the case. A 
second example is where are 
12:49:48 the stories of BIPOC children 
with disabilities and their 
12:49:51 families most of the publish 
stories of children's 
12:49:55 disabilities by parents are 
written
12:50:00 mostly by economically and 
socially privileged U.S.   
12:50:04 Canadian, British and 
Australian white women. 
12:50:08 Setting a normative view of 
the children's experiences 
12:50:16 with disabilities those 
stories are raced white.   
12:50:24 Chris Bell in Blackness in 
Disability have called for how
12:50:30 racism and ableism work 
together as
12:50:36 does disability and critical 
race theory and education a 
12:50:39 book by
12:50:44 Conner
12:50:49 Ferri and
12:50:59 Amnama
12:51:03 even for children with the 
same diagnosis as white 
12:51:09 children the experiences of 
BIPOC children and their 
12:51:13 families are not necessarily 
the same merely based on their
12:51:16 access to resources and on 
tuneties which is what systems
12:51:22 of oppression are strictured 
to control. One clue is 
12:51:24 offered be
12:51:32 I by this 2020 report by the 
California Health Report
12:51:38 in a state where practices are
for conscious than many other 
12:51:42 places. Many parents of 
children with special health 
12:51:48 care needs regardless of race 
report struggling to receive 
12:51:55 prompt diagnosis and access to
adequate therapy and support 
12:52:01 services. But for families of 
color, particularly those that
12:52:06 are black and Latinx the 
struggle is more acute. These 
12:52:10 families grapple with bias 
attitude from medical service 
12:52:13 and education providers
12:52:17 .   Sometimes the bias is 
unconscious but the net result
12:52:23 is the same. Poorer care than 
what families typically 
12:52:27 receive.        Health systems
don't often account for the 
12:52:29 impact of
12:52:34 institutionalized racism on 
people as color such as higher
12:52:39 poverty rates, less access to 
jobs, less flexible and time 
12:52:43 paid off to care for kids.   
Greater transportation 
12:52:50 challenges and that lack of 
awareness can exacerbate the 
12:52:55 inequities. Culture and 
language barriers can make it 
12:52:58 hard for these parents to 
navigate California's system 
12:53:01 for children with
12:53:07 disabilities and advocates of 
said. This is from a 2020 
12:53:10 report in a place that works 
to
12:53:17 serve the needs of children.
12:53:20 In conclusion ableism is
12:53:26 a system of oppression -- 
ableism as a system of 
12:53:29 oppression provides challenges
and barriers but it doesn't 
12:53:36 work alone. Ableism intersects
with other systems of
12:53:40 oppression to provide [
coughing
12:53:49 [coughing]  vastly different 
experiences and the care 
12:53:53 givers of those children. A 
theory of intersectionality 
12:53:58 will aKHRAOUPL TPHAEUT the
12:54:04 across the
12:54:07 ability spectrum and their 
care givers it will equip us 
12:54:12 to make visible and tell more 
complete stories of children 
12:54:15 across the spectrum of 
abilities and of the people 
12:54:23 who support them with care.   
Folklorist can help to end the
12:54:30 invisibility and absence of 
these narratives and to
12:54:34 challenge assumptions.
12:54:39 That's the
12:54:44 end.        
»AMY SHUMAN:  Thank you so 
12:54:46 much 
12:54:49 Phyllis. Another really
12:54:52 terrific presentation
12:54:56 and just in case anyone didn't
hear my original explanation, 
12:55:02 I am going to try what I think
is
12:55:09 describing this in plain 
language and
12:57:13 I encourage you all to help me
out. I haven't ever tried to 
12:57:15 explain
12:58:19 intersectionality.        
»NORA GROSE:  I am talking to 
12:58:24 you from my apartment in north
London when it is the first 
12:58:29 sun any day we have had no 
quite some time. I am going to
12:58:32 speak today not from a 
personal prospective I am not 
12:58:36 a person with disabilities 
myself although I have worked 
12:58:42 on disability issues since 
late 1970's and I
12:58:47 work in a much more pride than
theoretical frame and I am 
12:58:53 going to use this kind 
invitation from you folks as a
12:58:55 way of
12:58:59 encouraging or trying to more 
folklorist to get involved on 
12:59:04 issues of implied inclusion of
people with disabilities in 
12:59:07 global health and 
international development and 
12:59:11 local issues of social justice
. I think folklorist have a 
12:59:18 lot of offer and so far, the 
have Ises of folklorist are 
12:59:24 missing in an important 
dialogue.         Increasingly
12:59:27 call upon expert ins and 
practitioner it is social 
12:59:31 sciences humanities, law 
public health but folklore is 
12:59:36 called upon to inform and 
improve interventions to make 
12:59:39 a difference in the lives of 
people with disabilities. I 
12:59:44 think this is a lack of 
inclusion that represents a 
12:59:48 significant over site.   
Folklorist have a lot of 
12:59:50 contribute. Folklore 
incorporates a wide range of 
12:59:55 beliefs and practices that 
inform and shape how 
12:59:59 individuals and respond to 
beam with disabilities and how
13:00:06 people with disability's 
themselves frame the
13:00:09 world around them. Global 
health and international 
13:00:10 development effort TOGS 
address the concerns, needs 
13:00:13 and rights of the over 1 
billion people 15 percent of 
13:00:19 the world's populations who 
live with a disability. 
13:00:23 Disability is called the world
's biggest minority group. I 
13:00:28 will argue this should be 
under taken from two direction
13:00:33 folklorist offering their 
expertise and insights to 
13:00:38 global help and decision 
makers and just as importantly
13:00:41 training on folklore for
13:00:46 experiments and in global 
development I would also an 
13:00:51 important components should be
leadership by folklorist with 
13:00:56 disabilities themselves. My 
own background I won't go into
13:01:01 in great depth I am the 
director now of the university
13:01:04 college London international 
center for disability research
13:01:09 it is one of the few research 
center in the world that 
13:01:15 specialized in low and middle 
income countries I am 
13:01:18 anthropologist and work with a
13:01:21 team of social scientist
13:01:32 s. And we work on disability 
and poverty, social justice, 
13:01:38 infection diseases, access to 
things like equal rights
13:01:41 for education, PHROEPLT
13:01:46 voting rights for people with 
disabilities specially in very
13:01:48 poor communities and we work 
with a lot of organizations 
13:01:56 from the UN system the WHO 
down through a lot of 
13:01:58 nongovernment
13:02:01 organizations Save the 
Children groups like that 
13:02:06 through disables people's 
organizations and grass roots 
13:02:12 advocacy groups I am 
anthropologist with a solid 
13:02:15 background in folklore and I 
have found in all the work I 
13:02:18 have done over the many years 
that folklore has consistently
13:02:24 be a corner stone of much of 
what I do. How I frame 
13:02:26 questions?  How I organize 
projects, approach individuals
13:02:30 , communities and 
organizations large and small.
13:02:38 Why folklore in particular?  
In why is it so important? 
13:02:40 Well, for one thing folklore 
is a body of knowledge, 
13:02:44 beliefs and shared 
understanding that helps 
13:02:48 unique groups of people 
together
13:02:51 range from the broadest myths 
and ledgened to the smallest 
13:02:54 shared stories to commentaries
and jokes if we don't know 
13:02:59 where people are coming from, 
we don't know how to ask them 
13:03:03 to change or ask them in those
cases where there is strength 
13:03:08 ins the community how to 
preserve some
13:03:10 of those TRAOEGTs that make a 
difference in lives of people 
13:03:15 with disabilities. Folklore is
used as a form through which 
13:03:17 groups
13:03:17 process established 
information and take on board 
13:03:23 new information. It is also 
how they define perceived 
13:03:27 threats either internal or 
external and it is constantly 
13:03:30 changing. Again, if we are 
monitoring the folklore and 
13:03:32 understand where
13:03:36 people are coming from
13:03:39 , in the most remote community
in a small African village or 
13:03:43 a large urban area in south 
east Asia. If we understand 
13:03:46 what is going on with what
13:03:50 people are telling each with 
folklore we are way ahead of 
13:03:54 the game in trying to make a 
difference in people with 
13:03:58 lives of disabilities. 
Disability by the way there is
13:04:05 lots of ways I won't go 
through the nuances
13:04:09 I imagine people tuned in are 
HRRTD familiar with that. It 
13:04:12 is important to state in the 
little time I have disability 
13:04:17 is universal to all cultures 
there has never been a human 
13:04:23 society anywhere that doesn't 
have not just one number nut 
13:04:28 but a number of people with a 
number of different types of
13:04:38 disabilities.
13:04:42 Disability in general --   
actually the term disbill 
13:04:46 itself is not used in many 
languages and many countries 
13:04:49 don't have a term for 
disability they will say 
13:04:54 people who are blind, people 
who are deaf. Like the 
13:04:58 unfortunates or those that 
deserve our pity or something 
13:05:02 or other groups in terms of a 
single specific group, there 
13:05:05 is complexity even in the 
small scale society in how 
13:05:09 disability is seen.         
And it is based often on a 
13:05:12 number of different variables 
and I won't go into all of 
13:05:18 them.  It depends on how 
communities and cultures 
13:05:22 perceive how a disability 
occurs what it means for the
13:05:24 individual O to have a 
disability or what it means 
13:05:29 for a family member to have a 
--   family to have a disabled
13:05:34 member in their midst. Both 
positive and negative 
13:05:37 approaches to disability. It 
is very important often with 
13:05:40 speaking about disability in 
negative terms but in fact 
13:05:43 there is a lot of positive. 
When you look cross culturely 
13:05:47 and you are looking within 
your own communities when you 
13:05:50 talk to people who are
13:05:54 disabled THOEPLSs and their 
families it is -- there is 
13:05:59 great deal of strength and 
diversity and insights we can 
13:06:03 learn from people with 
disabilities. We have to be 
13:06:07 very careful to not assume 
just because you have a 
13:06:10 disability your life is not a 
rich and full one. It is often
13:06:14 true you are denied access to 
many of the resources that 
13:06:17 make life easier and many of 
the social support that is 
13:06:21 should be there. But, it is 
really important to realize 
13:06:27 that all disabilities are 
complex.         It is also to
13:06:30 understand disability in any 
society, you need to 
13:06:34 understand the folk lore 
around what is considered 
13:06:37 appropriate for a person with 
a disability that they can do 
13:06:44 for themselves. That they can 
do for others or to others. It
13:06:48 is based in large part on the 
expectations of what role 
13:06:57 society anticipated it will 
play as adults. [Word?] And
13:07:00 prejudice did yous is common. 
Amy mentioned I did my 
13:07:06 doctorate many years ago on 
the deaf community on
13:07:13 Martha's Vineyard there was a 
high rate of hereditary 
13:07:17 deafness because of a 
recessive
13:07:27 gene. They adapted to learn a 
new sign language on a regular
13:07:29 basis
13:07:32 people who are deaf there, I 
think had much easier time of 
13:07:34 it
13:07:39 because they were considered "
normal". There is no such 
13:07:43 thing as normal normal members
of
13:07:45 the KPWHAOUPBty having said 
that the life of a deaf person
13:07:49 there may have been easy but 
if you were intellectually 
13:07:53 disabled or had a mental 
health concern, your life was 
13:07:56 not necessarily any easier 
than anybody else with those 
13:08:01 types of disabilities on the 
mainland. It is not disability
13:08:05 or no disabilities type of 
disability and how community 
13:08:08 interprets that. And it is 
equal access
13:08:13 to resources. Persons with 
disabilities have the same 
13:08:17 right to education, employment
,
13:08:22 social, cultural and their 
lives are much better. Because
13:08:27 my time the limited as well. I
don't want to go into great 
13:08:31 detail, but let me give you a 
few exacts of what my 
13:08:34 colleagues over the last few
13:08:38 years have worked on as using 
folklore as a component to 
13:08:42 address issues of people with 
disabilities and communities 
13:08:44 most
13:08:47 of our work is in
13:08:50 Africa and south east Asia but
it is true around the world. 
13:08:55 We have worked on folk beliefs
and practices towards people 
13:09:00 with disability around HIV/
aids that put people with 
13:09:06 disabilities at increased risk
for acquiring Aids or lessons 
13:09:09 their chance of getting 
support and medical care they 
13:09:13 need. We have worked on access
to water and sanitation.   We 
13:09:19 did a large project in Zambia 
and 
13:09:23 Uganda where we compared 
access to
13:09:28 water and sanitation to poems,
sanitation for people with 
13:09:30 disabilities who were the 
belief is they shouldn't be 
13:09:35 touching water sources and 
they had -- there were beliefs
13:09:38 around people with 
disabilities and work to 
13:09:41 identify what the folklore was
and then work with the 
13:09:45 communities and village 
leaders chiefs local or 
13:09:49 disability groups to change 
these attitudes. We worked 
13:09:56 with -- we did an oral history
and either nothing RA if I and
13:10:03 survey as people working as 
disabled street biggers in the
13:10:10 capitol of Ethopia. We asked 
them how they got there, what 
13:10:14 their lives were like and how 
they saw their futures. A lot 
13:10:18 of folk lore was involved. My 
favorite was a gentleman that 
13:10:25 said my job is helping people 
I step on the mosque in the 
13:10:28 morning and church in the 
morning and collect [word?] 
13:10:33 And if they give me those they
get into heaven quicker. You 
13:10:38 talk to these people and they 
had a wonderful, diverse, rich
13:10:42 way of looking at their own 
lives and they interacted with
13:10:47 both the folklore and the 
culture in which they lived 
13:10:51 and it helped us much more 
effectively work with -- we 
13:10:56 get to work with the united 
nations labor organization to 
13:10:58 improve employment
13:11:03 opportunities for people that 
working as disabled street 
13:11:05 biggers. If I wasn't
13:11:09 coming from a strong folklore 
background I wouldn't ask 
13:11:13 these questions. In summary, I
believe what I am talking 
13:11:17 about is basically inclusion 
of folklore and using folklore
13:11:23 as a tool in international 
development, global health is 
13:11:26 a two way street an important 
component in efforts and there
13:11:31 should be leadership by 
folklorist who are themselves 
13:11:34 disabled as well as folklorist
who have family members that 
13:11:39 are disabled.   Really rich 
insights. And folklorist need 
13:11:45 to be more pro active in enter
offering their insights to 
13:11:48 global health and 
international decision makers 
13:11:52 and in training, we should be 
--  be providing training on 
13:11:55 folklore for
13:12:00 experts and advocates in 
international development of 
13:12:04 global health circles around 
disability and folklore. We 
13:12:08 should be training them to 
understand what is folklore, 
13:12:12 what can be changed.   What 
can't be changed and how we 
13:12:16 need to take into account 
traditional beliefs and 
13:12:21 practices if we are going to 
have any sort of hope making 
13:12:24 people rethink disability and 
having people with 
13:12:29 disabilities themselves take 
the lead in asking people to 
13:12:32 rethink. Again we are talking 
about the largest -- really 
13:12:37 the world's largest minority. 
We are talking about a billion
13:12:39 people
13:12:41 world lied and I think 
folklore has a lot to say on 
13:12:45 that. Finally, there is a lot 
of this could mesh with the 
13:12:49 global disability rights 
movement which is been in 
13:12:53 constraint over the past two 
decades and importantly new 
13:12:56 legislation up to and 
including the UN convention on
13:13:00 the rights of persons with 
disability if you are working 
13:13:05 with people with disabilities 
and don't know about this this
13:13:08 is an important piece of
13:13:13 HREPLG alligators it has been 
rad if Ied by 186 [word?] 191 
13:13:16 countries and that doesn't 
having something on the books 
13:13:19 as a piece of legislation 
doesn't always change things 
13:13:24 on the ground in the community
, but none the less, it is 
13:13:27 important we speak to the 
bigger picture of what is 
13:13:31 going on globally with people 
with disabilities.   Again, I 
13:13:36 think we have an enormous 
amount of say and I would just
13:13:41 encourage anyone who is 
interested please drop me a 
13:13:43 line.
13:13:45 Get orthopedic TPHAOEUZed 
together. I am so old I can 
13:13:48 remember being at the
13:13:52 first group meeting there were
8 people who set up the 
13:13:58 society for disability studies
in 1983 it was led by [name?] 
13:14:06 And I remember at the time 
sitting there and Erve saying 
13:14:10 there are not enough people 
out there. Now it has 
13:14:13 flourished for many years it 
is a major society. I 
13:14:16 encourage you all to be pro 
tack difficult folklore can do
13:14:20 a lot more than we sometimes 
think it can. Thank you for 
13:14:25 your time and again, and thank
you for the
13:14:29 previous two speakers it has 
been a priority ledge to 
13:14:35 listen.  Thanks guys. Saw saw 
thank you that was
13:14:40 terrific. And I want to 
mention we have in our 
13:14:43 audience today both folklorist
and people from disability 
13:14:49 studies the society for 
disability studies meets at 
13:14:52 Ohio state and it is going to 
be virtual this year you would
13:14:55 all be able to join us in that
conference if you are 
13:15:00 interested. And we are trying 
to bring together these 
13:15:06 different discourse between 
folklore and disability
13:15:10 studies. Those of you in 
disability studies that the 
13:15:16 American Folklore Society is a
global society. And within 
13:15:22 that society, we have a group 
called the fellows and this is
13:15:26 brought to you by that group 
that tries to think of new 
13:15:29 ways of advancing or 
interactions between folklore 
13:15:35 and other fields.         Now,
what I want to do is a brief 
13:15:40 plain language summary of Nora
's talk and I thought I might 
13:15:45 mention to my knowledge the 
people who need plain language
13:15:47 know the term advocacy and 
that's an interesting thing it
13:15:52 is one of the words I don't 
have to translate into plain 
13:15:56 language. Even if they don't 
speak, I have heard people 
13:16:01 spell it or say it in other 
ways. And that's fascinating 
13:16:06 in itself.   Although it is a 
complicated idea, they would 
13:16:13 know that. So, Nora says that 
folklore could do more work to
13:16:17 help solve problems about 
disabilities and health all 
13:16:21 over the world. We need to 
work on education and on the 
13:16:23 fact that some people don't 
have enough money or other 
13:16:29 things and we need to work 
with lots of organizations 
13:16:32 that advocate for people with 
disabilities.   Folklore helps
13:16:37 us to ask questions and decide
what to do to help people. 
13:16:40 Folklore understands how 
people work together. We need 
13:16:43 to know where people are 
coming from. Folklore can help
13:16:48 us to understand what people 
know and what they don't know.
13:16:51 And also to understand 
different kinds of 
13:16:55 disabilities.  Every part of 
the world has people with 
13:16:58 disabilities.   People's 
cultures and the stories they 
13:17:02 tell can be important for how 
they understand disability. 
13:17:06 Sometimes they don't even use 
the word disability. They are 
13:17:09 treated differently, people 
with disabilities are treated 
13:17:12 differently in different parts
of the world. Some groups have
13:17:16 good ideas about what it is 
like to have a disability and 
13:17:19 live a good life and we can 
learn a lot from them people 
13:17:23 in different parts
13:17:27 of the world have different 
thoughts about what a person 
13:17:31 can and can't do when they 
grow up and we can help them 
13:17:34 change some of those
13:17:37 ideas.  So, that's my
13:17:44 limited summary in plain 
language. So, now our three 
13:17:49 participants will be joined 
for a round table discussion 
13:17:55 by one disability studies 
scholar and two folklorist. 
13:17:57 Rebecca
13:18:01 Monteleone focuses on 
disability technology, and 
13:18:04 global policy she is an 
assistant science and 
13:18:09 technology at the University 
of
13:18:11 Toleto.
13:18:14 Andrea
13:18:19 Kitta is a profession SOR in 
the department of English and 
13:18:27 Sara Cleto is cofounder of the
school of folklore and the 
13:18:32 fantastic. I will now invite 
everyone to be part of this 
13:18:40 round table. Also introduce 
you to Robet Barron wearing a 
13:18:47 blue shirt he is secretary of 
the American Folklore Society.
13:18:51 And they will also maybe be 
part of this discussion.      
13:18:55 So, I guess we will start.  We
didn't agree on who would 
13:18:58 start, but I think I
13:19:03 will start by asking
13:19:07 Nora, Prahlad and
13:19:12 Phyllis if there is anything 
you want to add before we move
13:19:15 forward. Comments on each 
other's papers or anything 
13:19:20 that is occurring to you. Go 
ahead, Phyllis.        
13:19:23 »PHYLLIS MAY-MACHUNDA:  I 
appreciated all of these 
13:19:28 presentations this morning. 
Nora you highlighted the issue
13:19:35 that disability is not treated
in a stigmatized way in all 
13:19:42 places and for me, that helps
13:19:46 connect with the idea of
13:19:51 in the United States 
disability connecting with 
13:20:00 other systems of oppression. 
Classism and racism
13:20:05 are two of those systems. It 
stigmatized in the United 
13:20:12 States by itself, but it also 
interlocks with these other 
13:20:18 ones. It is not that this is 
the way disability
13:20:25 naturally is. It is that we 
have some values
13:20:31 that
13:20:36 disvalue people with
13:20:40 disabilities and
13:20:46 disvalue them even more if 
they are people of color.     
13:20:48 
»NORA GROSE:  I agree. And 
13:20:51 again, any young students out 
there looking for a thesis 
13:20:57 topic, we really don't know a 
lot about disability in any 
13:21:03 number of communities tribal 
groups, ethnic groups, we know
13:21:06 for example that some native 
American groups have very 
13:21:10 different views on 
disabilities and much more 
13:21:14 acceptable of disabilities on 
some types of disabilities. 
13:21:18 Even saying in the United 
States, I think we need more 
13:21:22 data out there. It has been --
there hasn't been a lot of 
13:21:24 research on
13:21:31 this. It is true that in the U
.S. and especially disability 
13:21:33 is famed not only by 
individuals and communities 
13:21:39 but as you highlighted, the 
resources out there and social
13:21:45 supports what government can 
do to help. The inclusive or 
13:21:48 exclusive education 
opportunities for a child 
13:21:54 transportation, all of that is
really complex. We lack the
13:21:59 fine details and one thing 
that always suprises me. I 
13:22:05 have done a lot of work in's 
Africa you get distinctly 
13:22:07 different 
13:22:10 aPROUFPs on disabilities from 
one tribal group to the next. 
13:22:13 They are right next to each 
other.pproaches on 
13:22:17 right next to each other. I 
have given up and say we need 
13:22:19 more information.        
»PHYLLIS MAY-MACHUNDA:    Let 
13:22:27 me just say, I am not talking 
about within cultural groups 
13:22:34 as much as the United States 
main stream
13:22:41 and no matter what you do 
within your cultural group in 
13:22:42 the United States.        
»NORA GROSE:  Yeah.        
13:22:46 »PHYLLIS MAY-MACHUNDA:    The 
larger picture of the United 
13:22:50 States. Main stream that
13:22:55 disvalues disability.        
»NORA GROSE:  I really grow 
13:22:58 and think it is a really
13:23:05 important point. Yeah.        
»AMY SHUMAN:  Do any of the 
13:23:13 other panelist?  I am going to
turn to Andrea Kitta now
13:23:17 for your responses.        
»ANDREA K KITTA:  As my visual
13:23:23 describe I am a white woman I 
have dark
13:23:30 curly wavy hair. This is an 
amazing panel and I thank all 
13:23:35 of the participant so much. 
Being willing to hear these 
13:23:38 stories and to listen to what 
we all have to say about this.
13:23:42 One of the things of course 
that we can't ignore is that 
13:23:47 we are still in a pandemic 
despite what some people are 
13:23:51 acting as if we are not. We 
are still in a pandemic and 
13:23:55 how this has effected 
disability as well. So many 
13:23:59 things were brought up by our 
amazing
13:24:06 speakers are effecting us 
right now including ideas like
13:24:11 Dr. Prahlad bought up about 
intent, purpose and goal.   
13:24:15 That is so important right now
as we transition to what I 
13:24:20 hope will be a new world. I do
not like the idea to return to
13:24:26 normal. I think that is a 
horrible idea. What we found 
13:24:29 during the pandemic is getting
better at things like this 
13:24:33 like Zoom it was is more 
inclusive to so many more 
13:24:38 people. And, I also as an 
instructor and someone with 
13:24:42 ADD really benefitted from 
things like zoom conversations
13:24:45 that were recorded that I 
could then show my students 
13:24:49 but I could also review later 
on so the things I may have 
13:24:52 missed when I my attention 
where it maybe should have 
13:24:56 been in that particular moment
. I think we do need to 
13:25:00 rethink and this is a great 
time to rethink and have this 
13:25:03 discussion as we saw so many 
things that we were using that
13:25:06 were technologies that maybe 
based for people originally 
13:25:10 with disabilities but the 
benefit of us all. I think 
13:25:14 there is so many different 
things we saw during the 
13:25:18 pandemic. So many things that 
were pointed out to us that 
13:25:22 showed some of these 
technologies methodologies are
13:25:26 beneficial so everyone not 
just the disabled. And that is
13:25:29 so important in this 
particular moment and I think 
13:25:32 we need to pause and think 
about that. But at the same 
13:25:40 time, I also want to pause and
respect [word?] Of how we 
13:25:44 treated people with 
disabilities during this 
13:25:50 pandemic. So many people melt 
their lives and convenience 
13:25:56 was so much more important 
than so many other people's. 
13:26:01 We lost so many people. And I 
think we need to take a pause 
13:26:04 and think about that as well 
and what does that say about 
13:26:07 us as a culture and society. I
really hope -- I see everybody
13:26:12 here is very interested in 
working to dismantle some of 
13:26:16 these issues but to also 
inquire about the roots of 
13:26:20 things like the discipline of 
folklore. How are we based?  
13:26:23 How is
13:26:28 ethnography against people 
with disabilities. How can we 
13:26:33 improve that?  I enjoy these 
were brought up by people. I 
13:26:37 would like to thank all of the
panelist for bringing up these
13:26:43 things and bringing them to 
the forefront and all of you 
13:26:47 for coming and listening. I 
have about a billion questions
13:26:50 but I will let the
13:26:53 other people talk now.        
»AMY SHUMAN:  Thank you Andrea
13:26:56 . And I want to remind 
everyone if you want to put 
13:27:00 questions in the Q and A, we 
are going to pull those 
13:27:03 together and try to answer 
some of them during the 
13:27:07 webinar. I don't know if 
anyone wants to respond 
13:27:11 immediately to Andrea?    
Otherwise, I am going to turn 
13:27:14 to Rebecca
13:27:17 Monteleone and her comments.  

13:27:21 »REBECCA MONTELEONE:  I hello 
my pronouns are she her and as
13:27:25 a quick visual description I 
am a white woman with short 
13:27:29 dark hair. Dark colored 
glasses and I am wearing a 
13:27:33 scarf that is red and purple 
and white has a very loud 
13:27:37 pattern on it. I want to thank
you all for having me here 
13:27:41 today. You know, I am coming 
as someone working entirely 
13:27:46 outside of folklore. I work 
sort of at the intersection of
13:27:50 disability studies and science
and technology studies and yet
13:27:54 , it I was scribbling notes 
the entire time I am seeing so
13:27:58 many resonances here that are 
worth drawing out a little bit
13:28:02 as part of our conversation. 
Primarily the thing I am 
13:28:06 concern window and this is a 
concern for many disability 
13:28:11 studies scholars are that he 
has issues of knowledge 
13:28:14 politics whose knowledge 
counts and whose experience 
13:28:18 gets interpreted as knowledge 
and whose doesn't. This alines
13:28:22 with questions that came up 
from today's panelist. Even at
13:28:27 the begin Amy mention third 
degree in the context in the 
13:28:30 idea of competency and we 
think about it in the context 
13:28:38 of creditability.  Who get 
counts as credible. Who gets 
13:28:43 to bare witness to their 
experiences and who does not. 
13:28:48 In my work in cognitive 
ableism.   That residence
13:28:56 and issues of competence and 
creditability and who counts 
13:29:01 and who doesn't and who gets 
to tell their own story in the
13:29:05 way in which they tell it. How
these are alining both in 
13:29:10 issues of folklore and also in
issues in my field in 
13:29:13 technology development. And 
then the second piece that 
13:29:20 really struck me that I wanted
to call attention to is the 
13:29:27 power of discourse in actually
producing the material world. 
13:29:31 Narratives that we have are 
embedded in the material 
13:29:35 worlds we produce.   Whether 
that is a public venue or 
13:29:40 technology or something else. 
Thinking through that 
13:29:44 complicated relationship 
between discourse and material
13:29:46 world,
13:29:52 how those narratives don't 
bare on the social and
13:29:57 political aPROEGSs disabled 
people face but the political 
13:30:02 oppressions as well. Then 
shifting narrative can produce
13:30:04 oppressions as well. Then 
shifting narrative can produce
13:30:36 aoppressions disabled people 
face but the political a sort of radical reimagining 
of not just our society but our literal material world. 
And I think kind of pushing to
13:30:36 think about those connections 
a little bit more is certainlysomething that I think we need
to engage with more in disability studies and science
and technology studies but 
13:30:36 could be an interesting 
connection here in folklore aswell. And then the third thing
I wanted to think about beforeI sort of offer --   we can 
pass it on or have this as a 
13:30:38 conversation. Is narratives of
the future. The way ins which 
13:30:43 we are invisioning futures and
stories we still about the 
13:30:48 future which are futures 
produced through technologies.
13:30:52 I am using my area of 
expertise these are future 
13:30:56 visions that write disabled 
people out of them completely.
13:30:59 I think this idea of the 
narrative of the future brings
13:31:03 together all of these ideas at
once. Who get it is authority 
13:31:07 to tell those stories that 
future, how does that impact 
13:31:10 the kinds of material 
realities we have now and what
13:31:16 sort of futures does that [
word?] On. What kind of 
13:31:19 imaginative world are we 
foreclosing on because the 
13:31:26 stories we tell about the 
future are discollude disabled
13:31:29 expertise. Those are the 
things running through my head
13:31:33 and I really appreciate the 
diversity of ideas that came 
13:31:38 up here.   Yeah. I I will pass
it on for now and I am excite 
13:31:40 today have a conversation.    

13:31:45 »AMY SHUMAN:  Nora it looks 
like you have a comment on 
13:31:47 this.        
»NORA GROSE:  She brought up 
13:31:50 an important point narrative 
how people interpret 
13:31:54 disabilities and what it is or
what they owe to the greater 
13:31:58 society in making sure people 
with disabilities are included
13:32:03 the narrative can include how 
people with disabilities 
13:32:07 define their own life and can 
include I spent a lot of times
13:32:10 talking of ministers of health
in various countries and how 
13:32:15 they define disability or 
their narrative on disability 
13:32:19 is critical important.
13:32:23 Becca's point about narrative 
is more than fact.   Narrative
13:32:29 is the folklore cord that is 
helpful to use as a framing 
13:32:31 mechanism.        
»AMY SHUMAN:  That's a perfect
13:32:35 segue to Sara
13:32:40 Cleto. I didn't plan this. 
This happens to be perfect. Go
13:32:43 ahead Sara.        
»SARA CLETO:  Hi everyone I am
13:32:48 Sara for a visual introduction
I am a white woman with very 
13:32:52 curly dark hair and I am 
currently wearing a shirt that
13:32:58 has a print of about a million
wols on it. That could not 
13:33:04 have been a more perfect segue
into the kind of work I do. I 
13:33:07 am very
13:33:09 literary
13:33:14 folklorist. I spend most of my
time how folklore literature 
13:33:18 over lap and how disability 
shows up in so many of our 
13:33:22 narratives but often in ways 
people KPHRAOEPBTly don't 
13:33:28 notice or take for TKPWRABTed.
I have done a lot of work on 
13:33:30 fairy
13:33:37 tales which are bursting with 
representations of disability.
13:33:41 That blew my mind most of us 
are familiar with fairy tales 
13:33:48 and it is not something I had 
ever considered until
13:33:52 I started grad schools it is 
in every single one of the 
13:33:56 major tales. And part of what 
I spent a lot of time thinking
13:34:02 and writing and teaching about
is there are certain narrative
13:34:08 patterns we see again and 
again and again in fairy tales
13:34:11 with disability and some of 
them have been touched on by 
13:34:16 previous speakers the most 
often narrative patted earns 
13:34:19 we see are about over coming 
disability or curing 
13:34:25 disability or enTPHREUBGTing 
disability on someone as a 
13:34:29 punishment and there are other
kinds of counter narratives 
13:34:31 there are
13:34:34 examples of tales that don't 
do that. One
13:34:37 of my favorites
13:34:41 on fairy tales and the 
13:34:47 Grimm's Fairy tales in 
particular where you disabled 
13:34:51 animals working together to 
live their best life instead 
13:34:55 of being defined in a negative
way by their disabilities. 
13:34:58 There are other possibilities 
out there.   That is the -- 
13:35:05 and I would love to see more 
and more other kinds of fairy 
13:35:08 tales reimagining of
13:35:15 fairy tales which dove tails 
into what Becca was talking 
13:35:17 about.
13:35:25 One of the things that really 
struck me listening to these 
13:35:32 early presentations which were
ail so amazing was the comment
13:35:35 from Dr. Prahlad about tone 
and attitude which also dove 
13:35:39 tails into one of his 
questions about who 
13:35:44 folkloristics is even for. A 
lot of the work I do now days 
13:35:47 is sort of
13:35:52 academia adjacent. I don't 
work for a university. I have 
13:35:56 my own business where I all I 
do is folklore and a lot of it
13:36:00 touches on disability. Because
I am
13:36:06 outside or adjacent to the 
academy the way I talk about 
13:36:11 these things is different. It 
has been really interesting 
13:36:15 and a work in progress. What 
kinds of language do I choose?
13:36:19 How do I make this really
13:36:22 accessible to people who have 
maybe never encountered 
13:36:26 folklore at all academically. 
People who have never 
13:36:32 encountered disability 
academically and it ties into 
13:36:35 what Dr. Prahlad was saying 
about attitude too and that is
13:36:39 such an important component 
and I am going to thinking 
13:36:43 over that for a long time. My 
thoughts are not totally 
13:36:47 formed there. I could go on. 
But I will stop now so 
13:36:53 everyone else gets a time to 
talk again. Thank you so much 
13:36:57 Amy and everyone else for 
putting together a wonderful 
13:37:00 meeting and all of the
13:37:04 presenters who have offered 
such incredible food for 
13:37:07 thought.        
»AMY SHUMAN:  Thank you, Sara.
13:37:10 We are at a frontier moment 
here or I consider this 
13:37:13 webinar to be a frontier 
moment where we are thinking 
13:37:18 about the consequences for the
folk lore.   Prahlad you had 
13:37:23 ideas about the ways we would 
have to reshape folklore if we
13:37:26 are going to engage with 
13:37:32 disability and I think that it
is a way to do 
13:37:36 intersectionality, absolutely.
And it is a way to consider 
13:37:38 questions of social
13:37:42 justice. So, it is crossing 
all kinds of boundaries 
13:37:45 especially the
13:37:52 academic and the boundary of 
academic and advocacy and as 
13:37:55 several speakers have said 
disability studies already 
13:37:59 does that. Disability studies 
was born out of the civil 
13:38:04 rights movement really. It was
the civil rights movement that
13:38:10 made it possible for disabled 
advocates to emerge following 
13:38:16 that building on what they had
learned from the civil rights 
13:38:19 movement. We have to abandon 
that divide I will start by 
13:38:23 saying if we are going to 
engage in disability studies. 
13:38:28 I want to open it up now to 
the other speakers or other 
13:38:32 ideas people have. Questions 
you want
13:38:35 to ask each
13:38:45 other?  We can also open it to
some of the questions that 
13:38:51 have been asked by you in the 
Q app A. Maybe I will turn to 
13:39:00 that and we have comments as 
well as questions.        
13:39:03 »ANAND PRAHLAD:  I have a 
question.        
13:39:04 »AMY SHUMAN:  Yes.        
»PHYLLIS MAY-MACHUNDA:    This
13:39:09 is for Phyllis. I really loved
your presentation first. I 
13:39:11 have been
13:39:14 thinking about this forever
13:39:22 I am wondering if there are 
any parent ins
13:39:24 TKPWROEUPs or communities you 
have mentioned who have 
13:39:29 disabled children who are 
themselves
13:39:29 disabled? groups or 
communities you have mentioned
13:39:30 who have disabled children who
are themselves disabled?  And 
13:39:33 how that might
13:39:40 complicate a lot of those 
issues even more that you 
13:39:43 raised. On one of my -- and 
the reason I have thought 
13:39:50 about it forever is I thought 
oh my God if I had disabled 
13:39:54 children with my disabilities,
how
13:40:00 would I manage?  How would 
that work?   So, just that 
13:40:03 question. Do any of the 
parents you have run into 
13:40:07 themselves have disabilities 
and how might that complicate 
13:40:12 things for their
13:40:17 families?         
»PHYLLIS MAY-MACHUNDA:  In the
13:40:23 narratives that I have 
encountered I have not 
13:40:31 encountered people who have 
disabilities who wrote about
13:40:32 them.        
»ANAND PRAHLAD:  Uh-huh.      
13:40:33 
»PHYLLIS MAY-MACHUNDA:    And 
13:40:36 I think there is some real 
interesting
13:40:45 reasons for that. I think that
the people who have had the, 
13:40:50 the privilege of writing their
13:40:55 stories and experiences have 
been privileged themselves in 
13:40:59 many ways. Those are the 
stories that have been 
13:41:03 published. What I am
13:41:06 saying that
13:41:11 folklorist need to do is help 
get out the stories of maybe 
13:41:17 people who have less access to
privilege. I
13:41:23 mean, it is really hard -- 
being a parent of a child with
13:41:31 disabilities can be very time 
consuming, especially if
13:41:35 their level of
13:41:44 independence is where they 
need to be supported to be 
13:41:48 independent. And some people 
have either multiple children 
13:41:50 with 
13:41:55 disabilities which I can't -- 
you
13:41:59 know, their stories and then 
there are people with 
13:42:03 disabilities who are raising 
children with
13:42:07 disabilities. I
13:42:09 don't know
13:42:17 how they manage and some of 
them seem like they do not
13:42:23 have the full access to 
supports. Those
13:42:28 stories are not the ones that 
are published, but they are 
13:42:35 ones we need to know. And, 
that's what -- I agree with 
13:42:42 you, that's part of what we 
need to know.
13:42:44 
»NORA GROSE:  Could I add 
13:42:48 something as well?  She is 
raising a number of important 
13:42:54 points. It also depends on the
type of disability.        
13:42:55 »PHYLLIS MAY-MACHUNDA:    
Absolutely.        
13:42:58 »NORA GROSE:  There are some 
that are inherited down 
13:43:04 through families. People with 
different types of dwarfism or
13:43:09 have family heritages with 
they are familiar and 
13:43:12 comfortable with that type of 
disability certainly the deaf 
13:43:17 community there are families 
when the heritage of deafness.
13:43:22 In those cases, often the 
disability --   it is not to 
13:43:26 say it is always easy, but 
having a child born with the 
13:43:30 same type of disability you 
have is celebrated and is part
13:43:35 of the family tradition, 
community.
13:43:40 So, again, the issue is not 
just the family but how the 
13:43:44 family is linked in and 
supported and part of the 
13:43:49 broader community. I think it 
goes to say there hasn't been 
13:43:53 a will the of work on any of 
this when it comes to ethnic 
13:43:58 and minority communities, 
evenless.   She is
13:44:04 emphasized a really important 
area that needs far more 
13:44:05 research.        
»PHYLLIS MAY-MACHUNDA:    And 
13:44:11 I think also your point that 
the hierarchy of disabilities,
13:44:19 there are some disabilities 
that are less totally 
13:44:22 involving than other
13:44:23 disabilities.        
»NORA GROSE:  Yes.        
13:44:25 »PHYLLIS MAY-MACHUNDA:    And 
the more totally involving 
13:44:29 that disability is the more 
time consuming the support 
13:44:37 work is for that. And, so, 
those stories don't get out 
13:44:42 because there are other 
priorities and, you know, if 
13:44:48 you are somebody that has to 
work two or three jobs to make
13:44:50 ends meet.        
»NORA GROSE:  Uh-huh.        
13:44:54 »PHYLLIS MAY-MACHUNDA:    
Where is your time to write 
13:44:56 these stories
13:45:00 .        
»NORA GROSE:  I sound in some 
13:45:06 ethnic minority communities 
people who are -- families 
13:45:11 with people with disabilities 
and people with disabilities 
13:45:15 themselves your disability 
itself is not a priority they 
13:45:21 are told. You go to the back 
of the line. I think that is
13:45:24 unTPOPBLG gnat and a
13:45:28 missed opportunity.
13:45:29 fortunate and a missed 
opportunity.        
13:45:31 »PHYLLIS MAY-MACHUNDA:    
There are
13:45:36 also people who are sandwiched
between generations.   They 
13:45:41 are caring for children with a
disabilities and they have 
13:45:45 their parent who is are 
becoming disabled.        
13:45:48 »NORA GROSE:  Right.        
»AMY SHUMAN:  I was going to 
13:45:54 say to tie this into material 
cultures and technologies in
13:45:57 Charm,
13:46:05 Ohio there is an inherited 
dwarfism among the Amish. They
13:46:10 all have the Fisk row of desks
in the class rooms is for 
13:46:14 little people. It is 
considered a part of that. 
13:46:20 Also the buggys they drive 
there is a lot of adaptation 
13:46:25 because there is an assumption
of a large
13:46:28 population with this
13:46:33 TKRAR offism. Sayed the film
13:46:39 about a Palestinian community 
that has inherited deafness 
13:46:46 and everyone there not only 
does everyone speak sign 
13:46:53 language but their main 
industry in Al Sayed is the 
13:47:01 repair of tractors and other 
trucks. It is very noosy and 
13:47:05 they are aware the hearing 
people in the community don't 
13:47:09 do as well because it is 
difficult to work with that 
13:47:14 much noise. It is interesting 
then how that becomes a part 
13:47:19 of how people are and you find
an industry that works and the
13:47:23 film itself is about the 
question of whether they 
13:47:28 should allow their children to
get cochlear implants which is
13:47:31 another political
13:47:35 contra SRER I. There is some 
work oncontroversy. There is 
13:47:40 some work on some of these 
things folklorist could make a
13:47:41 big impact.        
»REBECCA MONTELEONE:  I wanted
13:47:45 to add a quick note about 
disabled parents. Connecting 
13:47:52 us to the fact that disabled 
parents experience extreme 
13:47:55 prejudice in the United States
at least. There are statistics
13:48:01 saying 80 percent of people 
with intellectual disabilities
13:48:05 that become parents have their
children remove from their 
13:48:10 home.  Another nuance is 
people who loose access to 
13:48:13 that socially recognized 
identity at some point in 
13:48:19 their life. These narratives 
might not be
13:48:22 recognized as parent
13:48:28 narratives because there is a 
denial in these social systems
13:48:28 .        
»PHYLLIS MAY-MACHUNDA:    
13:48:34 Building on that, there are a 
number of parents who loose 
13:48:38 their children because they 
are believed to not be capable
13:48:41 of raising children because 
they have disability.        
13:48:44 »NORA GROSE:  Uh-huh.        
»PHYLLIS MAY-MACHUNDA:    And 
13:48:49 so, there are legal issues and
13:48:56 foster care issues that 
intersect with disability 
13:49:03 there as well. The notion of 
competence is an important one
13:49:12 for us to explore. And what 
results from people with
13:49:14 disabilities being
13:49:19 seen as incompetent and sort 
of
13:49:23 bridging off of that,
13:49:28 the notion of being
13:49:32 incompetent and
13:49:40 its connection with the vision
of people of color being 
13:49:45 imcompetent as well.  It 
becomes
13:49:50 synergistic (sp?).        
»NORA GROSE:  Also in some 
13:49:56 countries, did some work out 
in Jordan in Egypt for example
13:50:00 where women who are disabled 
if they marry and have 
13:50:04 children they live in extended
families the comp P tendency 
13:50:07 is not just the individual 
woman but the support network 
13:50:12 around her. We don't take that
into the states where 
13:50:17 everybody is so 
individualistic. Most of the 
13:50:23 world you lie in extended 
families and that is an 
13:50:26 important component of 
families able to keep and 
13:50:30 raise their kid ins a 
supportive house hold.        
13:50:32 »PHYLLIS MAY-MACHUNDA:    But 
if there are traditions where 
13:50:34 those families are breaken up.

13:50:42 »NORA GROSE:  Absolutely.   
Then it is the opposite. It is
13:50:47 also important we in the 
United States ask about the 
13:50:53 parent and the mother and not 
about the communities in which
13:50:54 they live.        
»PHYLLIS MAY-MACHUNDA:    Yeah
13:50:55 .        
»NORA GROSE:  We need a lot 
13:50:59 more research out there for 
all of this.        
13:51:00 »PHYLLIS MAY-MACHUNDA:    
There is an interesting 
13:51:06 conversation going on in the 
chat about parents who 
13:51:09 discover that they have 
disabilities when they find 
13:51:12 out their child has
13:51:17 disabilities too.        
»ANDREA KITTA:  This brings in
13:51:21 a very interesting part of 
disability that is taked about
13:51:26 which is sexuality and 
disability. I know Oliva is 
13:51:28 here as well she worked with 
that in the past and that is 
13:51:31 something we don't take about.
We don't like to think of 
13:51:35 people with disability as 
being sexually active. We don'
13:51:39 t like to inspite of the fact 
that is something we 
13:51:42 absolutely should be
13:51:46 talking about and something 
that -- I believe this was 
13:51:49 Olivia's work I am going off 
of here where she taked about 
13:51:54 not only because it is a part 
of human life, but also 
13:52:00 because there is a high rate 
of abuse. Including sexual 
13:52:05 abuse and this is another part
of this conversation that is 
13:52:09 frequently just not discussed 
because of that [word?] Of 
13:52:12 people of disability that is 
we don't want to talk about 
13:52:16 them and sexuality. Any way, I
definitely, say you should 
13:52:21 look at Olivia's work she does
a great job. If you could put 
13:52:25 a link in the chat, that would
be amazing.        
13:52:29 »AMY SHUMAN:  She has created 
a program called speak up stay
13:52:32 safe and she is a valuable 
resource for this for all of 
13:52:37 this. Olivia please put 
something in the chat so 
13:52:39 people can find you.        
»NORA GROSE:  There is some 
13:52:43 stuff here in the U.S. and in 
high income countries but 
13:52:47 there is a fairly large 
literature and global 
13:52:52 literature on sexual and 
reproductive health on people 
13:52:54 with 
13:52:56 disability and sexual 
reproductive health.   Most of
13:53:02 it in the last five years 
everybody from the UNICEF to 
13:53:07 the world health organization 
have a lot now on issues of 
13:53:14 women and men and sexuality, 
family planning, and also 
13:53:20 sexual abuse and physical 
abuse which unfortunately is 
13:53:24 much higher in disabled 
populations. Mate be that some
13:53:27 I don't have you want to take 
a look at that literature and 
13:53:32 bring the questions back home 
to higher income countries and
13:53:37 say we know about this but 
what do we know about it in 
13:53:41 Ohio. Is the same discussion 
going on in Maine.   There is 
13:53:46 a lot out there we just don't 
know, but I think is very 
13:53:47 importanted if we are going to
have meaningfully discussions 
13:53:49 about
13:53:54 a lot of this stuff.        
»AMY SHUMAN:  I know Becca 
13:54:00 works on this as well and is 
more of an expert than I am. I
13:54:04 got into the plain language 
because health depends on 
13:54:08 plain language. If people are 
going to be advocates for 
13:54:11 their own well being they have
to be given the information in
13:54:17 plain language. I have begun 
translating things here at 
13:54:19 Ohio State
13:54:23 University it was another 
hospital not in Ohio bit the 
13:54:28 case came to us of a woman 
denied a kidney transplant who
13:54:33 had down syndrome because she 
wouldn't understand the postop
13:54:37 instructions. That's how I got
involved in writing plain 
13:54:41 language. It wasn't a choice 
of somebody else was going to 
13:54:45 goat the kidney her brother 
was going to give her the 
13:54:48 kidney they couldn't make the 
argument somebody else was 
13:54:51 more deserving the only 
argument they could make is 
13:54:54 she didn't understand the
13:54:57 postop
13:55:01 ration procedures when I 
translate it, I don't 
13:55:05 necessarily understand the 
original.         This is a 
13:55:09 piece of the plain language is
a piece of
13:55:14 health care as well.        
»ANAND PRAHLAD:  I wanted to 
13:55:18 mention since the idea of 
disability and sex came up.   
13:55:22 There is a new book called
13:55:30 Sexy Like Us disability humor 
and sexuality. It is
13:55:38 Mildorodt I think it is coming
out in August from the 
13:55:42 University of Mississippi 
press. It is an exploration of
13:55:51 how disabled people online use
humor as a way of dealing with
13:55:55 sexual issues.        
»AMY SHUMAN:  Wonderful.   
13:55:58 Wonderful. We are about out of
time. Before anyone leaves I 
13:56:04 wanted to mention the salon 
next week that I think we are 
13:56:09 going to post the link now. We
are not going to have separate
13:56:13 salons.   We are just going to
have one button for 
13:56:17 registering for the salon and 
when you register, don't 
13:56:21 register yet we haven't gotten
that set up. Maybe the link to
13:56:25 register will be posted in a 
few minutes. There will be one
13:56:29 salon because the topics are 
so intersecting we decided not
13:56:33 to try to do separate topics. 
There will be small discussion
13:56:37 groups where you can continue 
this discussion with each 
13:56:41 other.        It just got 
posted in the chat. And we 
13:56:45 need to know what your access 
needs are. So the most 
13:56:50 important is we need to know 
if you would like an ASL 
13:56:53 interpreter. We can have 
closed captioning. We can have
13:56:57 the automatic one for all of 
the groups but it would be 
13:57:00 very helpful to know what your
access needs are because that'
13:57:04 s the only thing that we will 
consider. Otherwise, we will 
13:57:10 have you join the link and 
once everyone comes, we are 
13:57:15 arbitrarily send you to your 
salons. If anyone is willing 
13:57:18 to -- is interested because of
this discussion if you would 
13:57:20 like to be
13:57:23 a facilitator
13:57:29 e-mail me, we already have 
some people lined up to be
13:57:35 facilitates and note takes but
we could always use more. Were
13:57:38 you going to say something
13:57:42 Mary?  No. I thought you might
. I hope you can all see this 
13:57:46 link in the chat and also you 
don't need to record it now. 
13:57:51 If you go to the American 
Folklore Society website, you 
13:57:58 will find the link there to 
join the salon's next week. We
13:58:01 have found these are really 
important for creating 
13:58:05 dialogue it is so difficult in
a
13:58:10 webinar to each other. If we 
get you in groups of 10, you 
13:58:15 will have a chance to really 
talk. The volume we want to 
13:58:18 produce will include the 
presentations, the round table
13:58:22 and the summaries of the 
13:58:25 aHROPBs towards creating a 
greater dialogue. In this
13:58:26 case, Isalons towards creating
a greater dialogue. In this 
13:58:30 case, I would say what comes 
out of this webinar can be 
13:58:35 another catalyst for getting 
this whole field started. Some
13:58:39 of you asked about a network 
for further discussion. We 
13:58:44 could create something a list 
serve. You have to think about
13:58:48 what everyone wants and we 
will learn more about that 
13:58:53 next week at the salon. Did I 
miss something?    Let's see -
13:59:00 - you got my e-mail dress. It 
is
13:59:10 Shuman dot one and we have 
other people's information. 
13:59:14 You can't -- our participants 
because we are not in person 
13:59:19 maybe you have seen in the 
chats the enormous amount of 
13:59:23 gratitude that has been 
expressed toward you and our 
13:59:26 presenters and round table
13:59:30 participants thank you so much
we are so grateful and we hope
13:59:37 to see you next week at the 
round table noon to 1:30EST.  
13:59:41 Maybe I will use my last 
minute to explain why. We have
13:59:46 participants in Europe and 
through India. Our Asian with 
13:59:50 our south Asian participants 
they need today get special 
13:59:54 permission if they lived in 
china to live here at all and 
14:00:00 said it would be fine for us 
to end them a recording we 
14:00:04 settled on a time people 
willing to get up early on the
14:00:07 west coast of
14:00:08 the KWRAOEUTS and some what 
late for our colleagues in 
14:00:12 India and maybe there are a 
few people that did get on 
14:00:16 from other parts of the world.
That is how we settled on the 
14:00:22 time. 12:00 to 1:30 next week.
Look for the link and we look 
14:00:26 forward to seeing
14:00:29 you.
14:00:35 Also our interpreters and our 
captioner.   Really terrific 
14:00:40 ASL interpretation so grateful
to our
14:00:45 interpreters thank you.       
[Recording
14:00:48 stopped.]