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

March 07, 2023

YCSC Grand Rounds March 7, 2023

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

ID
9606

Transcript

  • 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.