“My World,” and the Musical, Medical, and Social Narratives of Autism
March 07, 2023YCSC Grand Rounds March 7, 2023
Jacob Gluckman, Premedical student at Bryn Mawr College’s Premedical Post-baccalaureate program
Information
- ID
- 9606
- To Cite
- DCA Citation Guide
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.