“My World,” and the Musical, Medical, and Social Narratives of Autism

March 07, 2023

Information

YCSC Grand Rounds March 7, 2023

Jacob Gluckman, Premedical student at Bryn Mawr College’s Premedical Post-baccalaureate program

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To CiteDCA Citation Guide

00:00Good afternoon and welcome to grand Rounds.
00:05Before we get started with today's
00:07presentation, just a heads up about
00:09next week we're having someone
00:12coming even further than New York.
00:14Next week we're having someone
00:16coming from Texas to join us
00:17and that is Doctor Lisa Campo,
00:19Engelstein Engleson,
00:20I'm sorry who is an attorney and an expert
00:24on legislation on transgender related issues.
00:28She has been very public in the in the
00:31press and we're really very privileged.
00:32That she is coming, so that's next week.
00:34And doctor Cardona is I'm extending on
00:37your behalf and invitation board both the
00:40hour before grand Rounds and the hour
00:42after grand Rounds where we're going
00:44to have some time to meet with her.
00:46So that's next week.
00:49And today I'm just so delighted
00:52to have this presentation.
00:53I've been looking forward to
00:55it for a long time.
00:57Jake Gluckman graduated from Yale
01:00College a couple of years ago,
01:02and upon graduation he did a clean,
01:06clean sweep of every music related award,
01:10which at Yale University is no small thing.
01:13And among other of his many musical talents,
01:17he wrote a musical that we're going
01:19to be hearing about and we're going to
01:21be hearing clips of called my world.
01:25And as you will see,
01:27this is not just music that we're
01:29talking about.
01:29We're talking about many things about life,
01:33about medicine,
01:34and certainly about autism and
01:36social narratives related to it.
01:40After Jake graduated, he spent some time.
01:45He started when he was in in college,
01:47coming to Winchester one to the our
01:49inpatient unit and visiting and
01:51getting familiar with our kids,
01:53with our unit with a roll of music.
01:56After he graduated and he was in New York,
01:58he kept coming back to the unit and
02:01putting together a group of students.
02:03Both Yale and other other students,
02:05as part might tell us a little
02:09bit about this outfit in New York
02:11City that he worked with,
02:12called here your song,
02:14in which he worked with kids with
02:16various disabilities trying to
02:18express themselves through song.
02:22And Jake is currently at Bryn Mar in a
02:25post back on his way to medical school.
02:27And boy,
02:28are we going to be lucky to have
02:30a physician with his sensitivity
02:32and with his talents.
02:33And fasten your seat belts.
02:35And Jake, welcome and welcome to your family,
02:37and you'll introduce some
02:38special guests as we go along.
02:39So, Jake, Luckman,
02:40come on.
02:49Just to take this one on Google.
03:09Antastic.
03:12Alrighty. It's going to make
03:14sure the mouse works fantastic.
03:17Hi, everybody, and hello to
03:19everyone joining from zoom.
03:21Thank you all so much for coming and
03:23thank you Doctor Martin for that very,
03:25very lovely introduction.
03:27My name is Jake.
03:29I graduated from Yale back in 2021,
03:31and I'm here today to talk to you about
03:34a musical that I wrote that is loosely
03:37based on my brother who's an autistic adult.
03:40And I'm also going to be talking
03:42about how that experience inspired
03:43me to want to pursue medicine,
03:46and what that experience taught me about
03:49the incredibly profound intersection
03:50between medicine and the humanities.
03:53So before I go any further.
03:57Oops.
04:05Going back, going back,
04:06going back. There we go.
04:09Uh, before we go any further,
04:10I would like to start with two,
04:12I think very important disclaimers.
04:14The first of which is that I'm going to
04:17be telling you a story about autism.
04:19One story with my own
04:21very biased point of view.
04:23I cannot, nor would I ever want to speak to
04:26the full experience of the autism spectrum,
04:29because the classic saying,
04:29as I'm sure many of you know,
04:31is that if you know one autistic person,
04:34then you really only know
04:35one autistic person.
04:37The second piece I want to
04:38bring up is the discussion,
04:40the much discussion around the language
04:41we use when talking about autism.
04:46Some people argue for person first
04:48language or person with autism and
04:50some people argue for identity,
04:52first language or autistic person.
04:55Some people might argue that it
04:57is important to define the person
04:58outside of their disability,
05:00that by saying person with autism
05:02we are separating the person from
05:04the disability that defines them.
05:06Although I would like to argue that
05:08part of the neurodiversity movement.
05:10Is showing how?
05:12You can't separate autism
05:14from someone's identity.
05:15Being autistic is an identity filled
05:17with joy and sadness and love and
05:20pain and everything in between.
05:22So therefore,
05:22for the rest of the presentation
05:24I will be doing my best to
05:27use identity first language.
05:29So Doctor Martin already?
05:30Introduced you a little bit to who I am.
05:34Maybe a little delay on this slide.
05:37No.
05:40Area so a little bit more about me.
05:43So as Doctor Martin said,
05:44I graduated from Yale in 2021
05:46with a BA in American Studies,
05:48and for as long as I can remember,
05:49performing and music and storytelling has
05:51always been such a big part of my life.
05:54I was a member of three singing groups,
05:56including the Elpis Wings,
05:58Yale Whiffenpoofs, and Yale Glee Club.
06:00I know it probably seems like too
06:02much singing for one person's time.
06:04But then, shortly after I graduated,
06:06I started working for an incredible
06:07organization called Hear your Song,
06:09whose mission is to empower children
06:11and teens with serious illnesses and
06:13complex health needs to make their voices
06:15heard through collaborative songwriting.
06:18Through that, through that organization,
06:19I led songwriting sessions for over 300 kids,
06:22ages 6 to 18. And.
06:25I feel like that experience.
06:28Really showed me the power of
06:31combining music and helping people.
06:33And it also introduced me to the
06:35incredible field of narrative medicine,
06:36which I'll touch on a little bit later
06:38during the early months of the pandemic.
06:42After I had written this musical,
06:44my world, I realized that what I
06:46loved most about writing the show was
06:48the ability to think critically and
06:50deeply about autism and disability.
06:52So overtime I started to explore
06:54what a career path might look
06:56like to allow me to do just that,
06:58but I'll get into more of that later.
07:00And so shortly after I finished
07:02my time to hear your song,
07:03I began my pre medical studies at
07:06brenmar colleges Postbac Premed program,
07:08which I will finish up in just a few months.
07:11So before I talk more into depth about
07:13my world and the process of the show.
07:15I want to show you a clip of the
07:18songs premiere back in 2019.
07:21The show, which I started writing in 2017,
07:23is, Simply put,
07:24a show about an autistic person
07:26named Benji and his dream of
07:28becoming a marine biologist.
07:30The show also explores benjy's
07:31relationship with his father,
07:33mother and brother,
07:34but I wanted to make sure that
07:36Benjy's story was at the forefront.
07:38The show has been multiple iterations,
07:40but in this first iteration
07:41that I'm about to show you,
07:42we follow Benji as he forms his first
07:45meaningful friendship with another
07:47autistic person in his school.
07:49In this scene or song,
07:51Benji and Natalie are two
07:52autistic seniors in high school,
07:54and they are just beginning to find the
07:56language to talk to each other and connect.
07:58The actors you see in this clip are
08:01Natasha Partnoy and John Pesega 2.
08:02Incredibly talented actors who
08:05performed beautifully embodied
08:07the characters of the show.
08:09So this song is called talking is hard.
08:15Fine. Can we do just one question?
08:19OK. The first question on the list
08:21is what's your favorite color?
08:25That's a boring question. Well.
08:28I really like the color green.
08:30And you? I really like the color.
08:36But what kind of glue do you like?
08:39Drive. I like naming them more,
08:43but I do like to draw with sky blue pencils.
08:48What do you say when he's quiet?
08:53What can I talk when he's silent?
08:59When you got nothing to say.
09:03You start when he just says OK.
09:07He said. Just talk a lot.
09:12Anyway, let's try one more.
09:13What do you do for fun after school?
09:19I like to watch TV.
09:23How about you?
09:25Sometimes carrying with me best.
09:28I only like those about the option.
09:30What's your favorite?
09:38I can't pick. What do I
09:41say when? Station software.
09:49How can I talk when my confidence?
09:58******* hard. We got nothing say
10:02talking is hard in the hallway
10:07like Mom said. He's talking, OK?
10:12It's cold outside today.
10:14I kind of like the cold. Ohh.
10:21It's hard.
10:25Talking song.
10:28Until you.
10:33Sorry, you can go first.
10:34Oh, no, no, you can go. OK.
10:36Do you like video games? No.
10:42Do you like museums? No.
10:48Do you like puzzles?
10:50That's something I do something.
10:56Play cards inside cards.
11:02To show to. Favorite thing to do?
11:07Pause. Let's do what powers?
11:18Say.
11:49Not to put John on the spot, but John
11:51is right there who played bendy so.
11:55Looks.
11:58Umm. So the rest of the show after
12:01that song follows Benji and Natalie
12:03as they search for independence
12:05and belonging with each other.
12:09So I'll admit, and I'll be honest,
12:11I was a little nervous coming here
12:13today to talk about this show.
12:15I started writing it over six years ago,
12:18which was at a time when I was just
12:19starting to develop my own thoughts,
12:21feelings and knowledge about autism.
12:24I wrote the show as an homage to my brother,
12:26and as much as I thought I knew about him
12:28and his experience with autism at the time,
12:31he has shown me just how much he
12:33has grown and changed since then.
12:35Much of the process of writing my world
12:37was a personal and educational endeavor,
12:39and upon reflecting about the
12:40show over the past few years,
12:42I realized that my biggest regret is
12:44failing to include my brother more
12:46in the conversation about the show.
12:48So in order to give you the full
12:50story about how the show came to be,
12:52I want to first introduce you to the
12:54person who inspired it rather than me.
12:56Tell you about Sam,
12:57I invited Sam to come here today
12:59all the way from Westbrook,
13:00CT to share a little bit about himself.
13:03So, Sam, come on up.
13:12Hello, hello, my name is Sam.
13:16I currently reside in Westbrook, CT.
13:18I live in the pinley and I am a
13:21member of Vista Life Innovations.
13:24This is a programmer.
13:26Those with disabilities live independently.
13:29Last few years I have been employed
13:32at Wheeling Engineering in Chester,
13:34CT my job is to build headlights for
13:38police cars and other emergency vehicles.
13:41I work Monday through Friday
13:43at Wayland and enjoy my work.
13:46I have that. I lead a very active life.
13:50After work during the week,
13:52I attend different appointments,
13:54including my personal trainer
13:57and nutritionist.
13:58I independently attend all my
14:01scheduled appointments and activities
14:03using public transportation.
14:04Since the town I live in is small,
14:07I can even walk to my appointments.
14:09I have many interests.
14:10Every other week I go to my local
14:13library to play Dungeons and Dragons
14:16with a group of new friends that
14:18he made during attending the club.
14:20I also enjoy reading. I read every day.
14:23I am interested in animals,
14:25mythology, astronomy, and Disney.
14:27Occasionally I enjoy playing
14:29video games or watching movies.
14:32During my free time in the
14:34evening and on the weekend,
14:35I enjoy getting together with friends.
14:37I host my friends at my place
14:39and we watched jeopardy.
14:40Sometimes it was temporary.
14:42Sometimes I will go to the
14:44movies with my friends.
14:46We also get together and hang
14:49out with my place or your place.
14:52I attend many activities through Vista.
14:55These activities are a great
14:57way to spend time with peers and
14:59to learn something new.
15:01A couple of my favorite activities with
15:03puppetry where I got to make my own puppets.
15:05The other was a therapeutic drum class.
15:08The class was interactive and it got to
15:10play and listened to some beautiful music.
15:13Enjoy living independently and take pride.
15:15All accomplishments.
15:16Thank you.
15:26Isn't he great, folks? Isn't he great?
15:31Worth writing a whole musical about.
15:34So I'll Sam's going to the bathroom.
15:38But um. What I do want to say is that Sam
15:42specifically told me that he did not want
15:44to come here and talk about his disability.
15:47And instead, he wanted to share the parts
15:48of himself that he wanted to highlight,
15:50parts of himself that may not
15:52get the spotlight so often.
15:53To me, this is a testament of Sam's
15:56ability to see people for who they are,
15:58their interests, their passions,
16:00their capacity for kindness.
16:02And I think to anyone who
16:04meets Sam for over 2 minutes,
16:05and I'm sure you all got that
16:07in the two minutes he spoke.
16:09You were instantly taken by his positivity,
16:12his joy and his kindness.
16:14Sam recently shared with me that my
16:16world was a little bit hard to watch
16:18over two years ago when you first saw it,
16:20and that maybe it was a bit
16:23too personal for him.
16:24But I want to share that he showed me that
16:26as much as I thought I knew about him,
16:28as much as I thought I listened
16:29to him at the time,
16:30I still have so much more work to do.
16:33And while I intentionally like
16:34to shy away from narratives that
16:36use autistic or intellectually
16:38disabled people to kind of show
16:40growth of neurotypical characters,
16:41I do want to point out that Sam teaches
16:44me about what it means to be a good
16:46friend and a good brother every day.
16:48So now.
16:50To bring you into the world of writing,
16:52my world,
16:52I need to talk briefly about the book the
16:54sound of the fear by William Faulkner.
16:56I promise this has a point.
16:59The sound of the Fury is a seminal
17:01work of 20th century literature that
17:03tells the story of the compass and
17:04family in Jefferson, Mississippi.
17:06The book takes place over 4
17:08distinct sections,
17:09the first of which is narrated by Benji.
17:12A 35 year old intellectually disabled
17:15man whose language is often disjointed,
17:17convoluted,
17:18and chronologically inconsistent.
17:19When I first read the sound in the fury
17:23in my senior year high school English class,
17:25I was struck by how Faulkner
17:27conveyed Benjy's neurodivergence.
17:29He brings the reader into benjy's experience
17:31of the world using figurative language,
17:33similes,
17:33streams of consciousness,
17:35all without ever labeling benjy's condition.
17:38In class,
17:38I remember spending days with my
17:41fellow classmates in high school,
17:42unpacking Faulkner's language
17:43and trying to understand how
17:45Benji makes sense of the world.
17:47And very soon I've realized
17:49that the agony of my classmates.
17:52They were just starting to understand
17:54what having an intellectual
17:56disability might be like.
17:57I had never felt such an
18:00authentic and profound portrayal
18:01of intellectual disability.
18:03In a in a literary, you know, piece.
18:05Nor had I ever identified a character that
18:07I felt closely resembled my own brother.
18:09I should also add that when
18:11I met Doctor Martin,
18:12I was thrilled to learn that
18:13he also shared a fondness for
18:15the sound of the Fury.
18:16He shared with me a book review that
18:17he wrote about the sound of the Fury,
18:19and I couldn't help but highlight a
18:21quote from the review that I think
18:23perfectly puts towards what I felt
18:25as an 18 year old reading this book.
18:27Doctor Martin wrote well ahead of its time.
18:29The sound and the Fury advocated
18:31for the rights of the intellectually
18:33disabled by providing a textured
18:35portrait of their inner lives.
18:37And so while Benji,
18:38from the sound of the fury,
18:39while Benji's experience felt
18:41a little bit relatable to me.
18:43I couldn't 100% see my brother's
18:45experience embodied in Benji,
18:46and after reading the book I started
18:48to think about what it might be
18:50like if I try to write a story
18:52based on my brother based on my own
18:54understanding of what autism is.
18:58Musicals have always been my favorite way
19:00of understanding stories and characters,
19:01because I feel like music and
19:04characters singing songs can
19:05sometimes help bring us into their
19:08world more than prose can by itself.
19:10So in thinking about writing this musical,
19:12which at the time wasn't even
19:14called my world at the time,
19:15I think it was called like the sound and
19:17the Fury project or something like that.
19:18I was always interested in writing
19:20a narrative about autism that
19:22was different from the obvious
19:24examples of intellectual disability
19:25that pervade our pop culture.
19:26Some of you may know these examples,
19:28I'm just going to highlight a few.
19:30But many examples of intellectual
19:32disability and popular media focus on
19:35kind of cold and withdrawn characters
19:37who are mostly interesting to us because
19:40they might have some savant likability.
19:42The biggest ones that come to mind are
19:45Dustin Hoffman's portrayal in Rain Man,
19:46Freddie Highmore's portrayal
19:48good Doctor and ABC,
19:49which I'll admit is a guilty
19:50pleasure of mine.
19:51You should all check it
19:52out as medical people.
19:53It's a really, really good show.
19:56Or the play the curious incident
19:57of the dog in the night time,
19:59which was on Broadway and based
20:01on the book by Mark Haddon.
20:03A quote that it came across later
20:04in my research from my world,
20:06I think represents what I was hoping
20:08to emulate in writing the show.
20:10Sarah Kerchak,
20:11who's an autistic Arthur author,
20:13wrote.
20:13Most of the stories you hear about
20:15autistic people in media and art
20:18are either miserable tragedies
20:19or inspirational triumphs,
20:21while most of our real lives
20:24exist somewhere in between.
20:26And now while thinking about
20:28my version of Benji.
20:29I wanted to write a character
20:31that closely resembled my own
20:32brother's experience in high school.
20:34His search for meaningful friendship,
20:36his aspirations, his dynamic with our family.
20:39And that part was undoubtedly the
20:41hardest part of writing the show.
20:43I really wanted to write a character
20:45that that had an earnest desire
20:47to connect with others.
20:48And which my brother,
20:49as you all probably saw, undoubtedly has.
20:51So I want to play another short
20:54clip of the show.
20:55This clip is the first song
20:56I ever wrote for the show.
20:57It's a song called Caddy,
20:59and it's a song where Benji
21:01first develops a crush on a
21:03girl that he needs in school.
21:07Is a microphone too loud?
21:10I talk very loud, I know.
21:13But then people online
21:14were saying that the last
21:15clip and the audio wasn't.
21:18The audio isn't shared.
21:21Share. Yes. Oh, share sound.
21:24There we go. There we go.
21:27Sorry about that. Soon, people.
21:28This is what a Yale education exactly.
21:34I almost brought my guitar.
21:37As I think one of the slides
21:39skipped, but this was the.
21:41No, caddy, go back. Go back. Yeah,
21:47we'll just play this song.
21:48So this is again, this is the
21:49first song I ever for the show.
21:50I'm just play the first minute of it.
21:53And this is again John,
21:55who's back there singing about a crush
21:58on a girl that he just met in school.
22:21When you talk, I talk quick.
22:24I've never talked before.
22:29Now I wonder if you like to
22:31play the games I play most every
22:33day. Chess and
22:35checkers are my favorite ones. I'll show
22:39you my fish collection. Goldfish. Guppies.
22:42I'm in no section you can see them all.
23:15Caddy, caddy.
23:19I.
23:23So it was always important for me to define
23:25Benji right from the onset in the show,
23:27as a character who has the capacity
23:29for so much love and kindness,
23:30and he sometimes notices things in
23:33people that neurotypical people
23:35might not necessarily notice.
23:37So Sam graduated, as he said he goes,
23:39to a program called Vista Life
23:41Innovations in Westbrook, CT,
23:42and he graduated from their
23:44Discover program back in 2017,
23:46just when I was starting to write the show.
23:48And in this, in this speech,
23:50Sam told the audience.
23:53That he said,
23:55in the future I would like to continue
23:57my research and all things biology and
23:59possibly get a job in animal biology,
24:01like teaching people about
24:02all the animals on Earth.
24:04The day after,
24:05Sam and I got breakfast and
24:06you told me that he might want
24:07to go to a college someday.
24:09This all got me thinking that there's so
24:10much that Sam has to offer in the world.
24:12He has so many big dreams and big ideas
24:14and big desires to connect with others.
24:17And I thought,
24:18what better story than that
24:19to try to investigate?
24:21It was important to me to introduce
24:23the cast and crew of my world
24:25to Sam and some of his friends.
24:26So we all took a trip together to
24:28Vista and Westbrook and played some
24:30theater games with Sam and his friends.
24:33And so, soon enough,
24:34Benji and my world were brought to the stage.
24:37The show, which premiered in April 2019,
24:39was performed, designed,
24:40and performed and produced,
24:41all by Yale undergraduates,
24:42and I was thrilled to sit front
24:44row with Sam and my family and ten
24:46of his friends on opening night.
24:48Following the show's debut performance,
24:50I was also fortunate enough to connect
24:52with an organization called Music for Autism,
24:54which provides sensory,
24:55friendly and autism friendly concerts to
24:58individuals or autistic and their families.
25:01And so this was in September
25:032019 and as you can see here,
25:05this is the whole cast of the show.
25:07We performed A1 hour concert version
25:08of the show and it was really,
25:10really a lot of fun and a great way
25:12I think of getting to bring the show
25:13and the music to an audience that I
25:15was really, really passionate about.
25:18So for two years I took a break
25:20working on the show.
25:22I've been living in it for almost
25:23three years at that point,
25:24at the end of 2019,
25:25and I knew that I needed to gain a
25:27fresh perspective after returning to it.
25:30So towards the beginning of the
25:31senior year of my senior year as
25:33I was deciding what to do for my
25:35senior thesis in American studies.
25:36My world was always tugging at
25:38the back of my brain.
25:39Since the show's premiere,
25:41I had had important conversations
25:42with the cast and the crew about
25:44the limitations of the show,
25:45mainly that there were no no
25:48openly neurodivergent voices on
25:50the show's cast and creative team.
25:52Even though I had direct
25:53experience with my own brother,
25:55I didn't think that was enough
25:56to tell a well represented,
25:57sensitive and authentic story.
26:00So I decided to dig a little deeper and
26:02go beyond my limited knowledge about ASD.
26:04I decided to conduct a
26:06critical revision of my world,
26:07which involved reading disability literature,
26:10interviewing actors and
26:11writers on the spectrum,
26:12and updating to show to better
26:14reflect my brother's growth as he
26:16came out of high school and became
26:18a more independent adult at Vista.
26:20The actors and writers I interviewed
26:22well were all part of a neuro inclusive
26:25theater company called Epic players.
26:30That will come up.
26:32Epic players is an incredible organization
26:35that provides paid performance opportunities
26:38for autistic actors and writers.
26:41And so I had 13 interviews over zoom
26:43and I got 13 unique perspectives on
26:46autistic stories and what people feel
26:49about autistic representation in media.
26:52One of the more influential interviews I
26:54had was with an autistic and non binary
26:56actor based in New York named Sarah Kaufman.
26:59Sarah and I spoke on zoom together
27:01for about 2 hours in which they told
27:03me all about their late diagnosis
27:05of ASD at the age of 22 years old,
27:07and I wanted to highlight a few
27:10important quotes that Sarah told me.
27:12Sayre said that being autistic
27:13isn't a character.
27:14Being autistic is an identity.
27:16And to me,
27:16that was really profound,
27:17profound thinking about the kinds
27:19of representations that we're
27:20used to seeing in TV and theater,
27:22where the physicality of the
27:24disability is emphasized,
27:25as opposed to the humanity of
27:27the disability behind it.
27:29Sarah also said it is so freeing
27:30to be the person who shapes
27:32the world instead of trying to
27:33shape yourself into the world.
27:35And I promise sare I would give a
27:36very small plug for their musical
27:38podcast which is now available on
27:40all streaming platforms that they
27:42wrote called the reality shaper.
27:43So check it out.
27:47My conversation with Sarah was so
27:49engaging and inspiring that they
27:50asked that I asked if they would be
27:52willing to be the dramaturg and write
27:53some new lyrics for this new version
27:55of my world that I was writing.
27:56Those of you don't know what a dramaturg is,
27:59I don't know what a dramaturg is, but.
28:01It's mostly someone who helps the
28:03writer or the creative team on
28:06making sure the script is logical.
28:08And for Sarah,
28:08I wanted to make sure that I was
28:10accurately representing their story
28:12since I was so inspired by them
28:14that I wanted to incorporate their
28:16late diagnosis story into the show.
28:18And so in April 2021,
28:20I put on a zoom reading of the new version
28:22of the show featuring 2 autistic actors,
28:25Elliot and Sayre.
28:27Via Daniels,
28:28I should I should mention playing
28:30the roles of Benji and Caddy.
28:33I ended up smashing Natalie and
28:35cutting into one character and
28:36then changing Natalie to Katie.
28:37But anyway,
28:38the show focused more on Benjy's
28:40interest in becoming a marine biologist,
28:42but the show was shifted to focus more
28:44on his life as a burgeoning result,
28:46which felt more true to my
28:48brother's experience at the time.
28:49And I also felt that it increased the
28:51stakes and urgency of Benji needing
28:53to find his place in the world.
28:55And I also wanted to show these two
28:56kind of competing autistic narratives,
28:58Benji,
28:58who had a diagnosis very early on in life,
29:01and caddy based on Sarah's story.
29:03Who is only discovering they might be
29:06autistic over the course of the show.
29:08So I wanted to play a very short
29:11clip of a scene between Elliot
29:13and Sarah playing Benji and Katie
29:15from this new version of the show.
29:17So the setup for this is that
29:18Caddy is a tour guide in aquarium,
29:20and when she and Benji meet,
29:21they immediately bond over their
29:23appreciation for marine life and
29:25caddy starts to wonder whether
29:26whether she might interpret the world
29:28in a similar way that Benji does.
29:33I wanna show you something.
29:36Scene 8. Milltown, Lake Benji
29:39and Caddy stand next to
29:40the lake and look around.
29:44Wow, this is beautiful.
29:47Yeah.
29:54Lakefront. Are you here?
29:59Are you in some secret club?
30:02I wanted to introduce you
30:03to my late friend,
30:04but maybe she's not here today.
30:06You're late friend.
30:07Wow, you're a popular guy. Yeah, I am.
30:11So do you come here often?
30:14Yeah, my mom took me here all
30:16the time when we were younger.
30:18Have you been here before?
30:20I think I was here with my grandma
30:22once. I don't really remember it. What's
30:26your favorite exhibit at the aquarium?
30:29Um. I don't know, maybe the manta rays?
30:34Cool. Mines the sea turtles.
30:38What's your second favorite exhibit
30:40at the aquarium? You know, Benji,
30:42we can talk about other things,
30:44like other than the aquarium, right?
30:48Why? Well. We both already know
30:53that we know a lot about fish.
30:56We could talk about something else.
30:59Like what? I don't know like basic
31:02things to get to know each other.
31:07Like what? Like,
31:10what's your favorite color?
31:12That's a boring question.
31:14Come on, it's so easy.
31:17So that scene ends up leading
31:18into a revised version of talking
31:20his heart, which is a song that
31:21you heard in the beginning.
31:25So the reason I want to show this clip
31:27is that I think it was interesting
31:29for me to get to see two autistic
31:32actors embody these characters,
31:34two people who have very different
31:36manifestations of what autism could be.
31:38And I think that was the most interesting
31:39part of the revision process.
31:43So. Some of you may be thinking,
31:46I want to show you something.
31:47No, no you don't, Benji.
31:51So some of you
31:52may be thinking.
31:53How does spending three to four to
31:56five years writing a musical turn
31:58into wanting to go to medical school?
32:01If you're thinking well,
32:02he must have learned how much actors make,
32:04then you're only partly right.
32:07During the first few months of the pandemic,
32:09I had time to reflect on theater's
32:11role in my life and my ambitions.
32:13As much as I loved the creative process
32:15of my world, what drove me to create?
32:18Wasn't primarily my desire to write or my
32:21desire to dig into the craft of theater.
32:24My drive was wanting to understand
32:26autism and my brother more deeply.
32:28Well, I do believe that the show,
32:29that writing the show pushed me
32:31to get a deeper understanding
32:33of autism and neurodivergence.
32:35The show itself could only do so much.
32:37And during also during the
32:39early months of the pandemic,
32:40I got a front row seat to the
32:41depth of the mental health crisis,
32:43since my mom, who was here today,
32:46is a psychiatric nurse practitioner who
32:47had to do zoom sessions from her house.
32:50And so,
32:50seeing the importance of my
32:51mom's work in a whole new light,
32:52combined with this new reflection on theater,
32:56I started to wonder if psychiatry,
32:58or medicine as a whole might be right for me.
33:01And so I was fortunate enough to connect
33:03with Doctor Martin through a mutual
33:04friend that I met through the elderly club,
33:06Dr.
33:06Kyle Pruett.
33:07And Doctor Martin was so generous
33:09in helping me explore my newfound
33:10interest in medicine that he asked
33:12if I wanted to lead a music workshop
33:14for the patients that Winchester won,
33:16and I immediately jumped at the chance.
33:19During my final semester of college,
33:20for once a week I would visit the
33:22unit and play some music games
33:24with the patients at the unit.
33:34And so every week I would go to the unit,
33:35I would play music games with the kids,
33:37and early on I was figuring out a rhythm.
33:41I taught beatboxing,
33:41which is something that I did for over
33:44300 concerts in my time in acapella,
33:45but ultimately I found the
33:47activity that I think worked best.
33:49One of my favorite things is listening
33:52to instrumental music from movies.
33:54I'm sure we all have that one movie that the
33:56if we listen to the music from that movie,
33:58it instantly brings us back to childhood.
34:01And so for me, those were movies like
34:03finding Nemo's Harry Potter Treasure Planet.
34:06I don't know if any of you know Treasure
34:07planet, but it's yeah, Sam knows it.
34:11Sam knows everything about Disney.
34:14But So what I did was I I kind of played
34:16this music for the kids and asked them to
34:18just say a few words about maybe how the
34:21music makes them feel what they imagined.
34:23And there was one patient in particular
34:26that I want to share that shared I
34:28think something pretty profound.
34:29I played the opening to Finding Nemo,
34:31which is kind of this lush music that
34:33I think is the perfect representation
34:35of like the calm, open ocean.
34:37And this patient who hadn't spoke
34:39for almost the entire session.
34:42Said after listening to it,
34:43she imagined a a girl much like
34:47herself roaming through the woods
34:48trying to find her way home.
34:50And to me.
34:52That interpretation.
34:54Was a subtle reflection of her
34:56inner life in a way that I think
34:59music and storytelling was the
35:01only way to be able to reach that.
35:04Doctor Martin also invited me
35:06to observe at a virtual medical
35:08student conference early in 2021,
35:09and when he asked me to share
35:11about my musical.
35:13That was the moment that I started
35:15to wonder whether there really
35:16is a place for art and stories
35:18and humanities and medicine.
35:20So all these experiences seamlessly
35:22LED into my job postgraduation,
35:24which was working for hear your song.
35:27As I mentioned before,
35:28here song is a fantastic nonprofit co-founded
35:30by someone who's here, Dan Rubens.
35:32And here are songs.
35:34Mission is to empower children and
35:35teens with serious illnesses and complex
35:37health needs to make their voices
35:39heard through collaborative songwriting.
35:41I'm sure you can tell that I've
35:42practiced saying that mission like,
35:43over and over again.
35:45Your song was a transformative
35:47experience for me and that it kind
35:49of reopened my eyes to the power of
35:51stories and helping us understand
35:53patients and people in general.
35:54However, brighter than me,
35:56rather than me writing my own
35:58story with music,
35:58I was getting to help kids right theirs.
36:01I want to share with you
36:03a short clip of a song.
36:05That was written and performed
36:08by 13 year old dejarlis,
36:10who I met through Montefiore Medical
36:12centers Arts and Integrative
36:14Medicine program in their outpatient
36:16psychiatric clinic.
36:17So this is deja Lisa song
36:19called everything will be
36:20OK.
36:29I've tried and tried but
36:32everything just doesn't feel right.
36:34It's been feeling like a
36:36battle is going inside my.
36:41Life goes by so slowly and keeps
36:44leading me onto decisions and
36:46I'm really, really tired of it.
36:52I keep trying and trying and trying
36:54and trying but still it's not enough.
36:57So I keep selling and selling
36:59and selling and selling myself.
37:21I really wanna be.
37:23But my graver fueled this let me be can't
37:29think of anything to do so bad here I.
37:33Sorry, I'm trying. I want to give up,
37:36but still it's not my.
37:39Trying and trying and trying and trying.
37:42Not. Like you selling and selling.
37:46Thing and telling me.
38:08Feels like there's two of me getting
38:12really tiring. Maybe I should
38:29Dangelis was one of hundreds of kids I
38:32worked with during my time at Heart Song.
38:36Here, song showed me that magic
38:38can happen when we empower
38:39patients to share their stories,
38:41and more magic can happen when
38:43we listen to those stories.
38:45Not all of here, your song songwriters
38:46wrote about their health journeys,
38:48but many who did ended up sharing
38:50their anxieties or frustrations with
38:53medical settings, medical procedures.
38:56Some kids even challenge some
38:57assumptions that we might make about
38:59patients who have certain conditions.
39:01For example,
39:01there's an 11 year old named Nella who
39:04wrote an incredible upbeat jazz song
39:06about what it's like having epilepsy.
39:09And how with epilepsy you get to have cool
39:12things like having an EEG and an MRI.
39:15It's a really great song.
39:17Here, song also introduced me
39:19to the incredible philosophies
39:20of narrative medicine,
39:22which I've sort of taken a little snapshot
39:24of their mission statement up here.
39:26But narrative medicine is all about
39:28the intersection of humanities
39:30and centering patient stories.
39:32And Dan Rubens,
39:32the cofounder of your song,
39:34even got to do a narrative medicine
39:37workshop featuring Nelly's lyrics
39:38from her song I have epilepsy.
39:41One of my also favorite parts of
39:42getting to work for here your
39:44song and it felt kind of a full
39:46circle moment was I got to pilot a
39:49partnership collaborating with Dan with
39:51NYU's Autism Nest Support Project,
39:54which aims to better support
39:56neurodivergent kids in their classrooms.
39:57And so because we wanted to separate
40:01autism and neurodivergence from the
40:03illness target of our of heartsongs mission,
40:06we wanted to pilot this partnership and
40:08bring here songs programming to five.
40:10Neurodivergent teens in the Bronx.
40:13During my year with hear your song,
40:15in order to gain more clinical exposure,
40:17I worked as a child life volunteer
40:19at Weill Cornell Medical Center,
40:20and even there I got to see the power
40:23of stories in medical settings.
40:25In this one case there was 1/8 year
40:28old who we were kind of hanging
40:30around in the play area of the Child
40:32Life Center and she put on a toy
40:34stethoscope and started to reenact
40:36her surgical procedure with me.
40:39She got to perform her medical
40:40experience as she saw it.
40:41She put a little toy blood pressure
40:44cuff around me, put a shot in me,
40:46told me everything was going to be OK.
40:49And to me,
40:50I could really see how performing
40:52this experience and sharing the story
40:54helped her regain power and control
40:56over an otherwise scary experience.
40:59Also now during my postbac program,
41:01I'm a volunteer for Hospice
41:02organization and I get to see the
41:04power of stories every week when I
41:05go and visit a Hospice patient and
41:07they tell me stories about their life
41:10as their life is coming to an end.
41:13One of the biggest things my brother
41:15Sam has taught me is how much he is
41:18capable of personal growth and change.
41:20When I was at my most cynical
41:23about my ability
41:24and even my right to tell Sam's story.
41:27I ultimately realized that his
41:29story is not mine to tell.
41:32My world was and is, as I now see it,
41:35a story about my own idealism and how
41:37I wanted the world to see my brother.
41:40Like all the songs that I help the
41:41kids and hear your song, right?
41:42The show was merely a snapshot of my life.
41:46Just like how deja Lisa
41:47song everything will be OK,
41:49was a snapshot of her life.
41:53The show was also, to a lesser extent,
41:55a snapshot of Sam's life rather
41:57than the whole truth about
41:59his experience as it is today.
42:00The reason I want to share
42:02this is because I've learned.
42:04That medicine is often about accepting
42:06things that we cannot change,
42:08accepting stories that we cannot
42:10rewrite to make into neater endings.
42:12While there is so much that we
42:14know about the human condition
42:16through biology and modern medicine,
42:18there's so much that we don't know,
42:20and there's so much knowledge that we can
42:22only obtain through listening to patients,
42:25no matter how messy or nonlinear
42:27there's narratives may be.
42:29Medicine is learning how to accompany
42:31people and supporting them when
42:33things often can't be changed.
42:35The humanities is a vital part of this,
42:37because the patient is their story,
42:39as I'm sure you all know,
42:40and the only way we can improve
42:42on delivering the best care is by
42:44listening to more of these stories.
42:46Programs like Hear your song and the
42:48philosophies of narrative medicine
42:49can help healthcare providers see
42:51how a patient's quote UN quote
42:53history is so much more than physical
42:55symptoms and numbers on a test result.
42:58I want to highlight a quote by
43:01Megan O'Rourke.
43:02Who wrote a memoir called
43:04The Invisible Kingdom?
43:05If you haven't read it yet,
43:06highly recommend it's fantastic.
43:09Nope. Umm, making work rights.
43:12In the absence of certainty,
43:14medical science remains unsure
43:15what story to tell.
43:17Too often it turns away from patients.
43:19Rather than listening to the long
43:20and chaotic stories we tell.
43:22Narratives that start and stop
43:23and double back,
43:24searching for meaning and the peculiar
43:26rash that broke out that day,
43:27or the car accident that triggered pain.
43:30Or the death,
43:30after which nothing was the same.
43:32When we suffer, we want recognition.
43:35We're science is silent.
43:37Narrative creeps in.
43:39I couldn't help that blurb about
43:40narratives that start and stop a double back.
43:42I couldn't help but think back to
43:44Faulkner's the sound and the fury.
43:46In which all of Benjy's experience
43:49in that book is narratives that
43:51start and stop and double back,
43:54which is often the case when we talk
43:56to patients about their experience.
43:58My musical.
43:59As much as I wanted to be a
44:00narrative about my brother,
44:02it was a narrative about my own blind spots.
44:04As a physician,
44:05I know that I will have many,
44:07and all I can do is lean into those blind
44:09spots and be curious about what I don't know.
44:12Looking towards my future as
44:14a healthcare provider,
44:14I will carry with me all the lessons
44:16I learned from writing my world,
44:18working at Winchester one,
44:19and working with hear your song.
44:21Listening to patients is so much more
44:24than listening to what is on the surface.
44:26It means being able to understand the nuances
44:29of the unspoken and what's underneath.
44:32Sam.
44:33I'm grateful to you for letting
44:35me tell a version of your story.
44:37And I know that it's not the full story.
44:40And I know I told it at a time
44:41when I thought I knew you,
44:42and I thought I knew about your experience.
44:44But you've inspired me to
44:46always keep listening to you.
44:47Because only when we start
44:49listening will the stories we
44:51tell be worth listening to.
44:53Thank you so much.
45:06And I have some.
45:09I have some recommended reading and viewing.
45:12These are some pieces of.
45:14Uh, comedy books, movies,
45:16TV shows that I think are really
45:18wonderful about the autistic
45:20experience that encourage you
45:22all to watch if you have time.
45:24And I'm happy to take any
45:25questions at this point if
45:26anybody has any questions.
45:37Lots of clapping on zoom if
45:39there are questions here in the
45:41in the audience. Thank you, Jake.
45:45Yes, artiste. And can you,
45:49for those of us who only know you from.
45:51Yeah, you're the RT.
45:52Can you just reintroduce yourself
45:54or for us and you ask your question?
45:55Yeah, absolutely. Hi,
45:56everyone. My name is John.
45:57I had that of playing Benji in the first
46:02iteration of of my world back in 2019
46:04and I'm very grateful to to Jake for
46:06trusting me with that opportunity and
46:09and very beautiful and special story.
46:12I'm just curious Jake, if you could
46:14just speak a little bit more. About the.
46:18Just sort of. You're coming
46:19to the realization of about
46:21the shortcomings of the first
46:23iteration of of the show and and.
46:26How how you just kind of went
46:29about. Going about revising
46:32and like making that decision
46:32to like do that that
46:33critical review and and revision and
46:35just kind of breaking the ice so to speak
46:38and like starting that process.
46:40Yeah, I mean I I think it was.
46:44Kind of a no brainer after the first
46:46production because obviously I mean.
46:47The ride we were on while working on that,
46:49it was so incredible.
46:51But I think, I mean even you remember,
46:53I think there were some conversations
46:55throughout where we were like.
46:57You know what?
46:57What right do we have to tell the story?
47:00Because there, as I said,
47:02there were kind of no openly neurodivergent
47:05or autistic people on the team.
47:07And I knew that was a shortcoming,
47:09but I I knew that.
47:11You know, shows like this about
47:14disability don't get done a lot,
47:16I think at at Yale.
47:18And so I knew that in this kind
47:20of educational setting, you know?
47:21I was willing to at least quote
47:24UN quote forgive ourselves for
47:25not being as inclusive as we were,
47:28but shortly after I knew that kind
47:30of in the quote UN quote real world.
47:33That's not OK and you know,
47:36at the time I really wanted to bring my
47:39world to possibly a professional stage.
47:42And so I knew that the only way
47:44to do that was to include,
47:45you know, neurodivergent voices.
47:47So. You know, I'll admit,
47:48when I was trying to figure
47:49out who to interview,
47:50I was Googling like theater autism,
47:53who works with disabled actors,
47:54and I found epic players.
47:56I'm sorry for the loudness.
47:58And then I found epic players.
48:01And I sort of knew that this
48:03educational environment and kind of
48:04writing my thesis was perfect for kind
48:06of doing this kind of ethnographic
48:08research and interviewing people.
48:10And then the revision was the
48:12actual kind of deconstructing.
48:13The story was really based on
48:15how much kind of I saw Sam grow.
48:18Over the past two years, and Sayre,
48:20who was helping me revise it,
48:23really had, you know,
48:24important things to say about, oh,
48:25that dialogue feels a little too kitchy,
48:27or that's not really what an
48:30autistic person would say.
48:31So that's kind of how it happened.
48:38Ohh yes please.
48:43Hi, Jay.
48:45Well, you've demonstrated
48:46the joys of mentorship.
48:49In a in a wonderful way. And you've
48:51also told us something about.
48:55The humanities is a bulwark
48:57against arrogance. And a
49:00very important thing for those
49:02of us who have hung around
49:03academic medical centers, there
49:06are things that
49:07you and Sam taught me about Neurodivergence.
49:11That were so vital, they really overwhelmed
49:14the funk, the things that I thought
49:16I had learned clinically because,
49:18you know, the brain privileges
49:21music in a very interesting way.
49:25Parts of it are preserved in Alzheimer's
49:27when the hippocampus is is being wasted.
49:30Why would music be preserved?
49:32And partly because it's such a powerfully
49:35emotionally connected form of communication,
49:39and you're bringing that to to
49:42help us understand the experience
49:45that Sam has grown up with.
49:47It's really been a gift. Don't quit.
49:51I think you you have a.
49:54I'm going to wish you good
49:56luck with the mcats next month.
49:59And we all do, because we need you.
50:03And I would encourage you,
50:05one of the things about narrative
50:07medicine is that one of the
50:09things I hear from my, you know,
50:11wet lab friends is they hear the word
50:13narrative message and they go yawn.
50:16And the problem is that we have not
50:17done a very good job of connecting.
50:20You know, the epigenetic value
50:22of narrative medicine. And
50:24I think we can all do a better job of that.
50:26Thank you, Jake, and thank you.
50:28Thank you. Thank you.
50:32Just checking the chat to see if there's
50:34any. We have a doctor Cardona here.
50:38Thank you so much and I appreciate
50:39with amazing gratitude all the
50:42work you did on when he won,
50:44when you were with us there on
50:46the psychologist on that service.
50:48And so I really appreciate your dedication
50:50to the kids we had who are so vulnerable.
50:52So I want to clarify something you said,
50:57if I'm understanding it,
50:58when you start to think about the revision,
51:01were you feeling yourself or that you
51:05would be accused of somehow disability?
51:08Appropriation,
51:08like you had made it your own in a
51:12way that you hadn't experienced with,
51:14was, was that something that had
51:16been communicated to you here as
51:18an undergraduate in some way,
51:20that you had appropriated something
51:22that you shouldn't have?
51:24That's a good question.
51:25I don't think the issue is
51:27necessarily appropriation.
51:28I think it was more of the the kind of
51:30actor piece of it like John who played
51:33Benji so beautifully and I I don't
51:36regret it all having John played Benji.
51:38But I think in I thought that,
51:40you know, doing the show over zoom,
51:42because of the restrictions of the pandemic,
51:43provide a unique opportunity for me to
51:45be like well, maybe I can collaborate
51:47with an autistic actor and writer.
51:50And I think it was more about
51:51when I had done the interviews,
51:53a lot of what these.
51:54Actors were saying is like.
51:57You know, typically when you see
51:58a show or a movie with an autistic
52:01or neurodivergent character,
52:02the kind of famous ones you see,
52:04it's like, oh,
52:05it's a neurotypical person
52:06playing that character.
52:07And those performances are often great.
52:10And I I don't think anyone would
52:12say those performances should stop.
52:13But I I wanted to explore what it
52:15would be like to collaborate with a
52:18neurodivergent actor and see actors
52:20and see what that would be like in
52:22the context of the show that I wrote.
52:24So my follow up to that was when you
52:26are finished with medical school,
52:29please apply here.
52:31And you work on the next iteration,
52:34would you then consider
52:36putting your lens as the front?
52:39As the front narrator,
52:41in other words,
52:41yourself as an emerging physician
52:45now looking at autism through
52:47a new lens and and you kind of
52:50being the central character.
52:52Oh boy, put myself at the center.
52:57Experience as an emerging physician in.
53:00And caring for neurodiverse
53:02individuals. Again, same
53:03story but it different. Yeah.
53:06I mean I that would certainly be
53:08an interesting thing to explore.
53:09I think my my always my kind
53:12of #1 priority was getting
53:13to center the autistic story.
53:16But you know kind of in in many
53:18people I've talked to I I don't
53:20want to put Ethan on the spot here
53:22but he this is Ethan Reardon.
53:24He he played the character of
53:26Quentin in the kind of revised
53:28version of my world and and Quentin
53:30was Benjy's brother and Quentin was
53:32always the kind of hardest character
53:34to write because it was kind of.
53:36Directly based on me.
53:37And I was really uncomfortable with
53:39it and all the drafts that I did were
53:42just like really bad about Quentin.
53:43But I I do think it would be an
53:46interesting thing to kind of return to later.
53:49I've always wanted to return to the show.
53:51I'm taking biology,
53:52physics and chemistry right now,
53:54plus labs,
53:55so I haven't had much time to work on it,
53:57but it definitely be something
53:59I would be interested in.
54:00Kind of my perspective as Sam
54:02grows up as I grew up,
54:04seeing how that dynamic changes.
54:08We have two more, at least more
54:10comments here in the crowd,
54:12Karen and and Karen, I know you well,
54:13but some people might not know you,
54:15so just introduce yourself please.
54:17Hi, my name is Karen Lammey.
54:19I'm the manager of the therapeutic
54:22recreation groups on Winchester one.
54:24And Jake, I just want to say,
54:26you know thank you for all that you did.
54:28I want to kind of did a little
54:30bit from what doctor Cardona said.
54:32But I had the privilege to work
54:33with Jake and the times that he came
54:35on to the unit with the children
54:37and the work was just incredible.
54:39I mean you said just such a small piece
54:41of of what you did and it was pretty
54:44amazing and then to continue with
54:45the here our song program was just.
54:48Just something incredible to our
54:50unit and all my 35 years there,
54:53I'd say it's one that just stands
54:55out above them the rest.
54:56So I I truly thank you from the
54:59bottom of my heart.
55:01And I love Doctor Cardona's idea
55:03of being the forefront.
55:04In fact, you could be a singing physician.
55:08Yes. I like it. Thank you so much.
55:12Thank you. Thank you.
55:13Thank you, Karen.
55:14And we have one more question.
55:15I'm sorry, I don't know your name,
55:16but you're gonna tell us who you are.
55:19I'm Ethan Reardon. Um, thank you,
55:21Jake, for an incredibly thoughtful
55:23and wonderful presentation. I'm
55:25curious about like
55:27I guess the lines of of value
55:30and or responsibility and and
55:32how these ethical questions
55:34come up to you or came up
55:36to you when? Performing my
55:39world for a neurotypical audience and a Yale
55:43audience versus a neurodivergent audience
55:47and. Whether there were
55:49different questions that came up
55:51to you and whether the value of the
55:52show changed depending on the audience
55:54that you were presenting it to.
55:56Because I know that for
55:59the music for autism group
56:00for for instance, absolutely
56:02loved and adored your work on my world. And
56:05maybe that had
56:07a different impact on how you
56:09were thinking out of it compared
56:10to its first presentation
56:12in the light
56:13and theater, for example, or or over zoom.
56:16So I'm curious about that.
56:18Yeah, it's an interesting question,
56:20I I feel like.
56:21I think the show definitely hit.
56:24People differently.
56:24I remember at the music for autism concert,
56:27it was more of a yes,
56:29we performed the show and the story,
56:31but like the kind of point of the
56:32mission of the organization is for
56:34the kids to kind of get up and dance.
56:36And the kids were like like
56:378 year olds and younger.
56:39So they weren't really, I think,
56:40focused on what was going on in the story.
56:42But after the performance at
56:44Yale that there was definitely.
56:46You know, I think as I said,
56:47I think, I think Sam.
56:50You know, had his reaction to it,
56:51and Sam and I have talked
56:52about it since then,
56:53but a lot of Sam's friends, you know,
56:55emailed me and messaged me about
56:57what they thought of the show about.
57:00You know,
57:01I think the.
57:04I don't want to like say nice things
57:06that other people said about the show,
57:08but one person did talk about the song.
57:09Talking is hard and how that
57:11was kind of like a, you know,
57:13good representation of maybe the
57:15communication difficulties and,
57:16you know, neurodivergence.
57:18But I I think.
57:21I think the the kind of big feedback I got
57:23was like for families and for parents,
57:26I was getting a lot of feedback about,
57:27you know.
57:28How I at least I hope the show kind of
57:32shows the different side of the family
57:34narrative that we don't get to see,
57:35I think typically in a lot of shows.
57:38You know that have existed about
57:40autism and our divergent of it focuses
57:42a lot on like the family impact.
57:44It's like how does this intellectually
57:46disabled person impact the brother,
57:48the mother, the father, the cousin,
57:50whatever.
57:51And I just I I hope that it provided
57:54a unique perspective and I think
57:57we just haven't done it enough for
57:59enough audiences for me to know like.
58:01You know,
58:01and everyone has their own reaction to it.
58:03So I would definitely be interested
58:04in to kind of explore more audiences,
58:06but thank you.
58:07Well, Jake, you you definitely have.
58:10You've given us a very unique
58:13perspective and we're very grateful
58:15and I maybe people on some can't see,
58:17but I want to also welcome and
58:19thank your parents and your family
58:21and of course Sam. Sam, I am
58:23our star for being here.
58:29And thank you for what you're doing.
58:31Thank you for what you're doing.
58:32And thank you also for being a model of,
58:34you know, sharing personal stories,
58:36vulnerable stories, human stories.
58:38We need more more of that in medicine.
58:40So thank you and.
58:44Thank you. Till the next time. Yes.
58:46Thank you everyone for coming.
58:48Thank you everyone on Zoom for coming.
58:50Thank you so much.