Art + Medicine

- [Speaker] Why is it important to talk about disability and medicine?

- Medicine's a part of our everyday life and disabilities are also a part of everyday life.

- Many of us are sick, ill, or disabled.

- I think there's some conflation between disability and disease that physicians are experts in disease and so therefore they should be knowledgeable about disabilities.

- It's important for these two groups to get together so that they can bridge a connection.

- You know, I always say bring a mother to the table and have these conversations.

Bring a child to the table, you'll have these conversations.

- When it comes to disability, I think there's many misconceptions.

- "Oh, you don't look like somebody who's Blind or you don't look like somebody with disabilities."

And I was like, "What is that?"

- A lot of people have disabilities and it's a good thing to talk about that and normalize it because, you know, we're just like everybody else.

(calm music) - [Announcer] This program was funded by the Minnesota Arts and Cultural Heritage Fund and the citizens of Minnesota.

(calm music) - We often use art as a language or a conduit to our deeper selves, but art also provides a landscape where we can investigate and challenge personal and societal beliefs.

Hi, I'm Kevin Kling.

I'm a storyteller and an artist.

- I'm Jessica Horvath Williams and I'm a disabled professor in English and Disability Studies.

- My name is Tseganesh Selameab and I'm an internal medicine doctor.

As medical providers, we are trained to strive towards restoring what we perceive as a normal body and mind.

In reality, every person's experience of their body and mind is different and that reality is ever changing.

- We know that in striving for normal, we by default lead to differences in power, inclusion and exclusion because it is not just defining what is normal, but who is normal.

- People with disabilities may have challenges that change how they move or interact with the world, but that is no different than any other individual.

- Disabled people form the largest minority population in the US.

While many people are born with disabilities, anyone through disease, accident or injury can become disabled at any time.

- And if we're fortunate to live long enough, we will all have changes to our hearing, vision, mobility or minds that can be understood as disabilities.

Yet as a society, we persist in understanding disability as a problem rather than as a typical part of the human experience.

- When we define a disability as the problem located in the individual that needs to be fixed by the individual and by medicine, we fail to examine how the way we understand disability is a social problem and how we have constructed a world that uses differences in ability to keep a whole community separate.

- So how do we address this chasm?

In this show, we'll explore how artists help to create alternative perspectives on disability through disability and redefine what we perceive as normal.

- The way I think that art can connect with communities in particular medical communities is to see our stories told by us in our way.

- Art connects communities through representation.

- Through communication.

- Art can help communicate with people and also other communities to help people understand.

- It allows for the sharing of different cultures and perspectives and allows people to just kind of open up about their lives.

- You get glimpses to other people's humanity.

- Art exposes, art reveals what's happening behind the curtain.

There's a fire in the freezer There's some blood in the rose There's a broken puppet on the wall I just saw it's eyes glow I thought it was just a limp machine That was damaged by the road But he's awake now and I believe He's a toy no more Broken puppet with your strings that fall Will you show me how you move on your own Cut loose like a ladybug That's climbing out of its rabbit hole Free fallin' like a corporate rogue Will you tell me how you bleed on your own When I was about three years old.

I started playing piano.

I actually recorded some music when I was 14 and I was selling it to raise money for my trip to Costa Rica where I had my injury.

I have a C5 spinal cord injury, so I don't have a lot of hand function.

Three years into my injury, found out I could still make music.

Started a band called Treading North.

That band broke up and I started Freaque.

Pinocchio had it wrong There's no such thing as real boys Try and try and try again But we'll never fit the mold The illusion of our freedom rings Over bodies that have coiled They're drained of all their agency And deflated leaking joy I remember one night I was working on music on my computer, which is usually the way I write, and I was like, maybe I'll go downstairs and play the piano.

It was this sort of cathartic, deep connection that I'd been missing for a long time with the piano.

And so I was able to kind of reignite that relationship through writing, you know, one note at a time and it kind of gave me this new avenue, this new path to create.

And I think since those songs are so sparse musically, I was really able to start experimenting with more poetry and more lyrics.

Broken puppet with your strings that fall Will you show me how you move on your own Cut loose like a ladybug That's climbing out of its rabbit hole Free fallin' like a corporate rogue Will you tell me how you bleed on your own Feel on your own Be on your own We took that idea of one note at a time to the extreme and realizing like, well, what if I do that with my old body?

(suspenseful music) A Cripple's Dance is a live music, live dance production performed and created by people with spinal cord injuries.

I would literally get on the floor on a mat and I would be moving down there and I have no movement below my armpits, so all I was doing was sort of gestural movements on the ground.

And there's something really like really empowering about that.

What they were gonna see was so deeply vulnerable.

I wanted to bring them into that and invite them to be vulnerable themselves.

It's not about letting your limitation limit you sort of, it's more about using the limitation to burst everything wide open and make magic through your limitations.

All right, let's spread across the room and we're gonna do some solo anchoring exploration.

- Cool.

- I started at Young Dance in fall of 2021.

As I started thinking about what we're doing in class and sort of taking a little bit more of a creative role, things have like really started to shift for me creatively.

I think it comes in line with my excitement for more improv-based performance.

- That was awesome.

- That was awesome.

(calm music) - A thing I'm starting to discover about dance and I think it's been a process of discovery over the last few years.

The way that I dance, the way that I move doesn't need to look a certain way, that's not just enough but exciting.

I think similarly that I can make music that sounds good or interesting to my own ears.

You know, my body is so different from the standard and I wanna explore that and tell that story because I think there are so many people out there who are struggling with similar things and it is this sort of like the floodgates are bursting wide open kind of feeling.

And I have no idea what is coming next, but I know something's coming.

(calm music) - We We We over... We are... We're... We overcome... We are... We are in whole wide, whole wide.

We are deep in... We are deep, overcome There was all this debate about page versus stage and I was always thinking to myself, well, why can't... Why does it have to be one or the other?

What happens if we turn the page into a stage?

Someday, someday, some day... We, we are over... We are, we are... Is this what the wanted unwanted don't want.

We are over...

Some day... Oh, deep we are overcome...

I!

we are over...

Someday, someday...

Ain't, what?

Someday, ain't... Any designed piece of text that you read, whether it looks conventional or not, is self-consciously sort of scoring something.

It's telling you how to read it.

All over...

Someday, someday, someday... Walloped up into dream upended and marched into houndstooth of knit elbows or garden of a million clenched buds, the doubled vox redouble into synced redoubt and sinks into that old silencing rite.

Shh, some... We are... Shh, what?

Shh.

I am, shh... (indistinct) I wanted to have the same sort of effect that I feel when I'm listening to a rap song that samples a vocal line underneath the rap that's being said, or like people talking me over each other at a barbershop.

Black lives matter.

So I wanted simultaneity.

And so that led me to doing this work that I've been calling performative typography.

Bow wow, shh, shh.

I can't.

Shh, shh.

Hashtag Black Lives Stutter.

Shh, shh, shh.

What we want is to not be your what's unwanted, your whats or your un... We want what's what to be unyours.

We want you to won't what your want to want.

Shh, shh, shh.

I can't.

Shh, shh.

Bow wow says the dog.

Shh, shh.

Day and night policeman work.

Shh, shh.

Fireman points the water.

Shh, shh.

Bow wow, says the...

Bow wow, says the...

Bow wow... Why won't you shh?

(calm music) It was the summer of 2021, I think, that I received my diagnosis, you know, I got my papers for ADHD.

At that point, I began to think about how so often in my work I was trying to break a sort of linearity.

I was trying to work in a way that I would describe as almost kind of fractal, where if you tell somebody, you can read this poem any way you want to, but you're still basically saying, start at the left top corner and end of the bottom right corner, you're actually still having a normative reading, right?

You've just sort of jazzed it up.

And I wanted to create something that felt really like what I was believing and wanting readers to be able to experience in my work.

That the stuff on the page looked and sounded closer to like how I think about it.

Like layers, there's just layers.

I mean, I was very interested in the way that text looks, the different sort of artifacts, different sort of rough edges there.

And that's when I began using collage techniques.

So writing these collage poems that allowed me to just literally take pieces of text, of images, things that I remembered, things from comic books, movie posters, and then overlap them in a way that reminds me of like a bathroom wall with graffiti on it, or a graffitied train or dense advertising spaces.

That kind of simultaneity also feels more like how I take in the world.

So making these poems this way is a way of saying this is still a poem.

It doesn't and may not look like or be structured like someone else's poem, but if certain kinds of poems are reflecting a mind at work, that's my mind at work, these poems are my mind at work.

(calm music) - I'm looking out of the second floor window of the Minneapolis Institute of Art and I can see my childhood church across the park.

Over the years, both of these buildings have been a place of salvation.

When I was a kid, the church provided solace, a light to follow and other times by placing me within the mystery.

And there are days now when work or life get to be too much and that's when I go to the museum and it gives me a new perspective.

There always seems to be a piece of art waiting there to help.

Today it starts with a white marble sculpture, Kiss of Victory by Sir Alfred Gilbert.

It's a life-sized warrior caught in the heat of battle and behind him a winged angel at once pursuing and urging him onward, the ethereal wings of victory.

So I take my first lap around the work.

Now my college professor, Paul Grandlin told me, "A good sculpture is something you wanna walk around."

Every perspective brings a new story, and it's remarkable how the marble seems to transfer the look and feel of skin the look and feel of skin but not real skin.

It's beyond real, ideal real.

And the angel is how victory is supposed to feel.

Pure trajectory and momentum, no sense of loss yet.

(calm music) The adjacent room features a Diane Arbus photograph of two nudists relaxing at home.

The couple in the photograph stare directly at us and have, well, very different b than the ones in Winged Victory.

They aren't perfect, and oh and they're wearing shoes.

Now, since this is a photograph and two-dimensional, Arbus has chosen our perspective for us.

The starkness heightened by the black and white print.

Her work tends to confront and challenge, but these folks in the photo, they're at home, they're in the world, they look content and unashamed.

Their front door is open, like, come on in.

With Arbus' work, if there is discomfort, it seems to come not from the subjects but from what we bring to the work.

Now as I look at the photograph, somebody steps in front of me.

This is my favorite part of being in a museum, other people.

I mean, real flesh and blood.

They unknowingly become exhibits The woman stands between me and the photograph, and although she's in more ways closer in appearance to the Arbus than the Winged Victory, I'm reminded of how beautiful humans actually are.

There's something that we really can't capture.

So behind me is the perfection of Winged Victory, before me stands the woman, and beyond her, the Arbus nudes stare out of their normal day at home.

Oh, and through the window across the street, that's God's house.

(calm music) - Changing perspectives allows us to briefly inhabit new spaces.

- Changing perspectives is an invitation to find our commonalities and to shift some of the conscious and unconscious beliefs.

- In medical spaces, changing perspectives has led to a movement away from fixing the people we care for, and instead, focusing on hearing what patients tell us they need.

By involving patients as co-experts in their care and considering how we use our medical expertise to aid them in achieving their desired goals.

This shift has also led to a closer examination of how we view ourselves as a profession.

(calm music) - I think there are a number of misconceptions in medicine about people with disabilities.

One way we can combat that is through increasing representation of disabled trainees.

of disabled trainees.

- I wish the medical community understood that there's far more of their colleagues that have disabilities.

- And also to compliment that with education specifically about disability and disability culture and disability identity.

- With my work as a pediatrician, having a disability, it brings the perspective of understanding.

And working with children with disabilities like ADHD, allowing those children to see their doctor, who also has ADHD, is able to still become a doctor.

And to those parents to see with their own eyes that, you know, my child can still achieve all of their goals and they're not limited by their disability.

(calm music) - I had pretty much spent a lot of time studying and hadn't really spent a lot of time exploring other interests of mine.

Prior to starting med school, one of my mentors told me they thought I needed a different outlet besides just medicine.

(upbeat electronic music) My name's Carmen Aguirre.

I go by VJ Neurite.

I'm creating a show file.

I'm going through a list of the songs that are gonna be played and coming up with what visual look we're going to have on stage.

I got into doing visuals the year before I started med school.

Found it really fun and started doing it as just a hobby, slowly developed into something I kind of had not predicted.

- Let's go.

(upbeat music) - The uniqueness of being a med student, VJ has really taught me the importance of having balance in life.

Understanding that balance is so important for helping your patients find that balance.

(upbeat music) When I first started med school, was the first time I experienced a lot of anxiety and things like that.

I had never really experienced that before, like severe anxiety, and VJing gave me an outlet to treat that anxiety.

And so I think one does not exist without the other, for me.

This is a creative monster.

This is a sleepy monster.

For me, I really define or think, in terms of disability, I think a lot about mental health.

This is a happy monster.

(chuckles) In COVID, I got into the NFT community and was making digital art and I came up with a concept for really wanting to address mental health in children.

A sad monster.

When COVID hit, we saw a five times increase in the amount of kids that were coming into the emergency room with mental health complaints.

Sometimes it's hard to communicate the types of emotions you're having, so my idea was coming up with these little monsters that each represented a different emotion.

The goal around the project was really to bring attention to talking about emotions and feelings.

What I found was it was not just a valuable tool with kids and mental health, but also people that had difficulties communicating.

So this could be people with language barriers, people with, who may be neurodiverse.

Confused monster, I like this one.

I did a rotation at a hospital, and this is something I don't like to admit, but like the staff was arguing about who was going to have to take the patient with a mental health disorder.

It didn't come from a place of hatred, it just came from a place of not understanding.

I created a whole like emotional support pet, so all of the monsters have pets.

My own experiences with mental health as well as like my experiences in rotations, really changed my course in what I wanted to study.

Because initially I was planning to do neurosurgery and neurology, and it guided me into wanting to do mental health and psychiatry.

Medicine, it's very set up to cater towards an average rather than an individualized care plan.

I don't think it's always very successful as a result, because we're all so unique and diverse.

And I think it also alienates the most diverse people from getting the type of care that they need.

This is a shy monster.

If we can break down the barriers of seeing things in a certain box, then we can kind of progress towards a better future in medicine.

(calm music) - I'm Michael Kim.

I am the assistant dean for student affairs at the medical school, and I'm a physician.

And I practice internal medicine, pediatrics.

So I have history of depression.

The demands of medical school really made my depression flare up.

Happy to say that I was able to go to the mental health clinic here at the University of Minnesota and get counseling and medical treatment, which really helped me be successful.

Having experienced challenges with depression as a medical student has really helped me provide a better support for students here.

And so when I'm meeting with a student, I can really show that empathy of someone who's been through a similar course.

What's important to think about in disability is that psychological disabilities, like depression, anxiety, are really disabilities, that they should be accommodated and considered similarly to other disabilities.

Approximately 10% of our students have accommodations during medical school.

That is the highest number of students of any medical school in the country that I am aware of.

There are many reasons why we really want to encourage, promote, support, and get people with disabilities as physicians.

Primarily, because we know from studies that physicians with disabilities provide better care for patients with disabilities.

But not only that, there's evidence to suggest that if you're a physician and you have a colleague you work with who has a disability, you also provide better care to patients with disability.

And then, finally, we learn so much more when we have a diverse workforce.

I think about all the patients who come into a clinic and potentially see a physician who has a mobility disability or has a sensory disability.

These are amazing things for our patients to be able to see.

And to have that trust in our profession, that is so important in providing the best possible care.

(calm music) - Everyone's experiences in life are unique and shaped by everything from race, gender, and citizenship to family roles, religious beliefs, and where in the nation or world you live.

- Even within our communities, we may have experiences and knowledge that differ from others.

This is also true of disabled people.

- The Americans with Disability Act and the World Health Organization acknowledges many, many different disability experiences mental, physical, emotional, congenital or acquired.

Disability as we know it is a mixture of these identities and shape our daily lives in distinct ways.

(calm music) - There's a spectrum of the many ways in which us folks with disabilities are in this world, in existence in this world.

- I'm at the age where I'm not really sure what is the disability and what is aging.

You wear stuff out.

Try to wear a pair of shoes for 72 years.

- The disability is complicated.

The experience of a person with one disability is gonna be quite different from a different person with the same disability.

- My autism, my ADHD, my OCD helps me collaborate ideas about vast numbers of the cosmos, the neurotypical people just don't understand.

- These are labels and stuff, but ultimately it's part of who I am.

It's written in the stars for me to be who I am.

- It's a component of me.

It's not all of me.

(calm music) - Heaven is all goodbyes, but I hope it's soft.

Softness of skin, softness of thought.

Call me soft and I'll send you a heart.

Won't do fisticuffs, just brisket cuts.

When people called me soft, I found I'd be ashamed.

Now I call myself soft, to rebuke that disdain.

Autistic, sensitive to everything.

Autistic, we don't speak the same.

Autistic, in every poem I sing.

Autistic, in every song I cry.

Using tears to wipe ink smudge from my pants cuffs.

Drowning in words, living for life.

Heard it once told that life is wasted on the living.

And death isn't something we should dwell on.

All I know for certain is life exists on the fence between hope and hopelessness.

It's like a seesaw, being Autistic, swinging from joy to a meltdown.

Sensory overwhelm, need something soft to calm me down.

The good Lord blessed me with soft skin.

So, I caress myself for comforting.

My masseuse, 20 years in the game, once said, I had the softest skin.

The softest skin she'd ever felt.

Like velvet, like felt.

I took the compliment.

But deep down, I knew Autism was to thank.

Autism and Allah.

One of the primary features of EDS, Ehlers-Danlos Syndrome, is velvet soft skin.

EDS is associated with ASD.

I hate how white people attach syndrome or disorder to everything they don't understand, and I hate how negative connotations are attached to those attachments.

Which perhaps explains the negative connotations I attach to my-same- self-said-Said-Saciid-name.

What's a shorter word for connotation?

How about, bro pass me the cream cheese and a light.

Pass me the hookah and a sprite.

Pass me fatty food and bring to stummy great delight.

Better yet, pass me a prescription for my ADHD.

So I don't have to self-medicate just to get through life.

just to get through life.

And if you can spare it, pass me that peace of mind.

Right behind two lost lovers stuck between time.

And the metronome which hangs over us all.

Ticking, tocking, clicking, clocking.

Bombs over Baghdad, bombs over Baidabo.

Bombs over Kyiv, bombs over Kurdish Peshmerga.

Young (beep), ever a learner.

Never have I clutched a burner.

That's a lie, but I was born in the land where AKs are cheaper than grains of sand.

And sand is all we understand.

The sun is all we have.

The Blackness of our skin, protecting us from it.

White people colonized Africa but 400 years after the Dutch erected limp castles on our land, their descendants' skin still peels off in the sun.

They can't even protect skin from sun, yet we're the inferior ones?

Anyway.

None of that matters anyway.

I just pray I get to see heaven one day.

Wish heaven on earth for all my people.

Wish heaven was easier to get into.

But as the prophet PBUH be up on him once said, the road to heaven is paved with hardship, the road to hell paved with ease.

So if this life is any testament, heaven just may be in our future.

At least we hope.

And hope is all I have these days, when nights turn to day, turn to nights again.

When the blood moon serenades my waking dreams.

When Larry Levis' ghost writes living poems in Fresno, Modesto, San Diego.

Takes the form of dirt devils, sand tornados, uses wind to carve poems about nothing into still more nothing.

Migrant farmers step over stillborn poems as they pluck fruit destined to be tossed from suburban fridges.

I got cousins back home who've never seen strawberries or fridges.

I don't know what that means, but I should probably cherish something.

At least while I still can.

Lord knows they could be on their way.

Shoot, I think they knocking on my door right now.

No knock raid.

Ain't that how the last brother got tased?

I mean shot.

Shoot, I mistook their guns for tasers.

Ain't that what they said about the brother they killed before him?

He was shot, a nine millimeter Glock taser?

This is Minnesota, bro.

All we export is frigid ice and police lies.

Murder too, tho.

We export a lot of murder here.

Shoot, am I next?

I wonder what lie they'll export about my murder, about my death.

I pray I'm not next.

And every one of my brothers prays he's not next.

In a country that values our bodies only in death.

Where we know every traffic stop could be our death.

In the land of never quite making rent.

Hmm, this place is hell.

But is that such a bad thing?

Hell is hard and hardship leads to heaven.

And heaven is all we have to keep us going.

Heaven is all goodbyes, but I hope it's soft.

I hope heaven is softer than this life.

And I hope I see you on the other side.

(cheerful music) (calm music) - [Interpreter] I remember when I was little and the Sunday newspaper had that comics insert and they were called the funnies back then.

I always looked forward to the newspaper arriving on Sunday.

And when it would come I would open up that big section of the newspaper.

And even as a small child, I would lay on the floor and take it all in fascinated with the colors and the storylines that the strips showed.

Growing up I would observe how people interacted around me.

After becoming a parent, I saw those interactions play out in my own life and some funny situations would occur.

I wanted to take that humor and put it on paper as part of showing what my life is like as a Deaf individual.

When I think of art and how I use art, it's powerful and visual.

The stimuli comes in and we experience it.

Of all the information we get through our eyes visually it comes across in vibrations in our body.

So how I think about the world and how I view art is so much different.

I think the key theme for me is communication.

I struggled to communicate when I was growing up.

It became then a reoccurring theme in my life and in my work because of my desire to want to connect with others.

I want to communicate visually.

I feel the direct impact that visuals have on my life.

My work is intended to reflect this impact to others so that they can experience it for themselves as well.

When I started out drawing comics, the dialogue bubbles or word balloons would be filled with English text and this felt jarring.

I don't walk around in my daily life speaking English.

I speak American Sign Language.

I tried drawing ASL inside the panels, but the frozen words took up too much space and it wasn't enough.

I wanted the same conversational ease that English has within those word balloons.

After some time researching, I came across a potential method of written ASL that fit what I was looking for.

I spent some time learning that method.

It wasn't fully developed then.

So I worked with the written ASL community to develop a stable version that would be on equal footing with the English in my comment.

I feel so much better now being able to write in ASL.

It doesn't matter what language you're thinking of, there's always different nuances.

As an English user, you have your own traditions, thoughts, worldviews based off the language that you use.

It's the same idea for a person that uses American Sign Language.

It doesn't have the same structure as English whatsoever.

(calm music) Many people reach out to me and ask, "How do you work with a Deaf individual?"

If you're hearing, don't impose your expectations on us.

If you're reaching out to a Deaf artist, you need to be seeking for equal footing, seeing us eye to eye, try to communicate with us and we can grow a relationship from there.

- And these are gonna be strikers.

And strikers is where you hold matches.

'Cause, you know, I'm about ready for the barbecue season.

First of all, I was born Blind.

I don't let my disability stop me from being a potter.

And what drew me to it is the fact that I like tactile.

Like you're always picking up, touching everything, that's me at the store.

Everything that you see in life or that you experience and touch, it inspired me to figure out what I'm gonna make.

Your mind keeps saying, well let me see what it takes to build it.

These are berry bowls and believe it or not, this is a soup container that comes off of those packaged soups.

And I take my berry bowl and I set it up this way.

When I say that I do pottery or they see me working and doing pottery, they're shocked.

Traditionally, there's not that many women and especially women of color or people with disabilities, I don't know any Blind female Black women in pottery to tell you the truth, I've never met one yet.

(chuckles) (calm music) I like texture.

Texture is my way of knowing what's around me.

So your mind is always trying to figure out exactly how is it supposed to be.

And that's part of the reason why I got into pottery was because I wanted to always figure it out and not just live in the world of a woman with a disability.

You can live in the world but you need to exist in the world that you live in.

And the only way that can happen is that you actually get out there and you touch things and you feel things and you don't let people say what your world is supposed to be.

And I just start putting that coat on there somewhere.

A disability does not mean no ability.

Disability is about ability.

Using the abilities that you have to create.

And if you really wanna do it, you'll figure out how to do it.

I want in the future to make sure that I stay doing public art with communities of individuals with disabilities so that we can become visible in the art world.

- Folks with disabilities are constantly adapting to a world that was not created with us in mind.

How can we become more active in the planning?

If we're to have a seat at the table, how do we create the table we all can use?

Where we aren't simply invited, but part of its construct.

The poet Rumi said, "Before right doing, before wrong doing, there is a field and I will meet you there."

The arts can also help create a neutral zone, a unique perspective of language and experience, a place of mutual recognition.

(indistinct chatters) - One thing that I have learned through the years that's been absolutely amazing in helping me communicate about having an autoimmune disease is spoon theory.

What spoon theory says is that most regular people can just wake up and they'll have the energy to do the things they need to do to get through their day.

And they don't have to think about it very much.

But when you're dealing with chronic illness, you have a limited amount of energy.

And most people say you have about 12 spoons, and each spoon represents a unit of energy.

So a day with my spoons might look like this.

I wake up in the morning and I spend one spoon.

What?

You might be saying, you spend a spoon just to wake up.

I don't even think about it.

Yes, one spoon, showering, and heaven forbid I have to wash my hair or shave, especially above the knee too, add a couple more spoons.

One spoon, eating breakfast.

One spoon, taking my meds and dealing with the side effects for the day.

One spoon, driving to work.

Better hope the roads are good.

One spoon, walking to my office.

It is 0.6 miles from where I park to where I park my butt for the day.

So for those of you keeping track at home, I am just sitting down to start work and I have spent half of my spoons.

So now I start work, they usually say about a spoon per hour about a spoon per hour depending on what you do for work, so a couple spoons goes to work.

Then I might wanna get some lunch, and all of a sudden I start to have to make really hard decisions for the rest of the day.

I have to work a few more hours.

And, you know, even sitting there for a long time can really cause a lot of pain.

I know that seems silly, but really sitting in the same position is hard on my body.

And I mean, no matter what, I still have to drive home, and evening rush hour is always worse.

And then when I get home, I mean, I probably wanna make a meal.

And maybe it's like super healthy, so I'm doing a lot of chopping and stuff.

And then, you know, I wanna do dishes, and I should probably like do laundry and clean the house, and heaven forbid I wanna spend some time with friends and have some fun.

And the story is, there are just never enough spoons.

And in March of 2020, I mean, I'll be honest, I had a pretty great setup.

I was working part-time.

I only went into the office every Monday and Tuesday, and then I worked from home the rest of the week.

And, you know, my coworkers like they were like okay, they weren't great about remembering to dial me into meetings all the time, 'cause I was the only one not in the office.

And on March 10th, my boss came to visit me in my cubicle.

We can hear people like coughing and sneezing all around me.

And she said, "You should go home.

You don't want that to get you."

Seven days later, everybody was sent home for two years.

All of a sudden, something sort of magical happened.

(chuckles) All of a sudden, everyone was at home all the time.

All of a sudden, I'm invited to every meeting.

All of a sudden, we're all on camera.

We're all wearing our pajamas.

It doesn't matter why.

And all of a sudden, every show, every conference, everything was online.

And here's the thing, this is what my new days look like.

One spoon, waking up.

I can tell it's gonna be a rough day.

So I just stay right where I am and I pop my computer open and start working.

I work for a couple of hours.

And then when I'm ready to, I go downstairs and I make some food for breakfast, save enough to eat for lunch later.

And, you know, then I come back and work again.

And if I'm feeling good enough, I can take a shower.

But honestly, like, I don't have to.

And it really does make a difference if I get the choice of when I do this during my day.

(all laugh) And then, you know, I can work for a couple more hours, and I can move around as I want to.

So I'm not getting sore, I'm not getting this brain fog, I'm feeling good.

And, you know, in the afternoon I can take my dog out for a walk.

And holy crap you all, if you're keeping track at home, I still have a bunch of spoons left.

I can have dinner.

I mean, I can get online and play games with friends.

And I still like have a spoon to deal with the stress of the pandemic without totally tapping out.

(audience laugh) And so the best thing about all of this was everyone was in it with me.

Nobody was judging my situation anymore.

There was a lot to appreciate during that time.

I realized about a month in that I actually didn't have any pain anymore, 'cause I was so in control of how I moved.

And I'm definitely not saying this to like minimize the terror of the pandemic, right?

'Cause I was like, holy crap, scared of dying every second of every day for a lot of months.

(chuckles) But, over the last year, I've had to mourn all over again as a lot of these opportunities disappeared.

And, you know, some things have stayed or been added on as permanent features and that is amazing.

But it's a little different, because once again, we're not all in it together.

Once again, there are haves and there are have-nots, and life is navigating lots of hard choices and constantly feeling judged by them.

And you never know what people are dealing with.

I'm invisible while in pain.

I'm invisible while on fire.

I will keep my blaze burning.

Thank you.

(audience applaud) - American culture teaches us that we should be self-reliant and self-sufficient.

That this is the goal of normal people and has been the goal of medicine, independence and a freedom from needing care.

- But this is not the lived reality for any of us, not just disabled people.

- Unlearning in medicine is leaning into the understanding that we are a part of and not apart from community.

- Throughout our lives in big ways and small, we all need care.

In disability culture, we call this interdependence, acknowledging that to survive and thrive, humans need each other, to care for each other and to be cared for in return.

And we find this care in community.

- It is within community that we eat, laugh, plan, share our struggles and triumphs.

We learn, we grieve, and we celebrate.

We come face-to-face with our own humanity and the humanity of others.

- Resiliency is defined as maintaining one shape.

While needing to be resilient is a difficult topic for many marginalized people, because we often gain resiliency through adverse, unjust experiences.

Through community, we learn to maintain our shape after it's been compromised by changes to our bodies and minds, and most often by the society we live in.

- As science and history tells us, a species is defined by its similarities, but it survives by its differences to others and those within its group.

That means we may not agree all the time, but a community is a space where I bring who I am to who you are, our herd, our flock, our pack, a place we all belong.

(calm music) - For me, what's unique about disability culture and community- - Disability culture is helping me understand coping with my autism and helping me understand what's like who am.

- Is that we kick butt.

(chuckles) - You're with other people that have lived the experience.

- We all kind of understand each other in a way that is relatable.

- How much unparalleled support there is.

- The thing that's unique about disability culture and community is that we just get it.

(calm music) - Art has the power to transform us by allowing us to experience a different viewpoint in the world from a non-judgmental space.

And the music that we write is really just the human experience.

(calm music) My music is primarily folk music.

I'm really into lyrics and melodies and harmonies in the folk tradition.

And then I also have some influences from Celtic music, specifically.

But because of a looping pedal, there's also this element of experimental ambient sounds.

And so it's sort of a blending of different traditions.

(calm music) I think the role of art is to connect with our creative energy.

I think something in us, very human, is just this desire to play and create and experience new things and I think art accomplishes all of that.

(calm music) And also helps us to express emotions that we might not have words for.

And it's a really human thing to wanna express what's inside of us in a creative way.

Can you see me, way in the back here I've been waiting, I've been waiting in line It's been a long time Can't get no service Still I'm hoping, I am hoping for a sign That one day things will change And we can finally take our place That history won't forget us Or try to minimize our pain And so I wait I got started in music in fifth grade.

There was an orchestra that came to our elementary school and played for us.

And I loved the sound of all the strings together.

And I knew that that's what I wanted to do.

And so we figured out a way that I could hold the violin.

I hold it in front of me like a small cello.

And I've been playing ever since.

Did you know that when I get angry I breath fire, I can burn this place down You may not realize all of the small ways I am not welcome, but just take a look around Disabled people are resilient, we're adaptable, we're creative, and I think we see the world and our relationships in it through a different lens.

To me, that is the essence of disability culture.

Pushing up, pushing up Through the dirt just like a seed But you're never quite a flower You feel more just like a weed Driving through, driving through You don't know where you are going But the windshield's always dirty And you never get to see What makes you think that you'll ever get there?

What makes you think you deserve to know?

Who are you really, are you so important?

Take a look around and watch the world unfold Watch the world unfold Disability culture has been like an evolving thing for me, just like realizing that it's out there and that you're not alone.

- I feel like there's this aspect of like we are creating the culture as we make art and as we connect with people.

- One thing that's been really important to me in the last few years is nurturing a sense of community among other disabled artists.

Part of it is because we haven't been amplified in our society, so a lot of us felt very isolated, because we were navigating the music industry in a way that it was not very accessible right now.

- For a lot of my life, I lived in a world not designed for me.

- Yep.

- And so I hid it for a long time.

And it wasn't until I understood that, hey, I'm not gonna get anywhere in life without asking for, not help, but, hey, support.

And being open and becoming vulnerable with other people.

- I love thinking about disability culture, because it reframes disability from something negative into just a form of diversity that really can be celebrated.

- It lets other people into the world and into the culture, because we're all just different bodies and we're all- - Exactly.

- Trying to figure out how to be in the same space together.

- Well, what I love about this is that we've built a bit of culture here.

We are a culture of three.

We are a community of three.

- Mhm-mm.

- Right.

Who are you really, are you so important Take a look around and watch the world unfold Watch the world unfold Watch the world unfold Watch the world unfold - We hope this exploration of disability and medicine through the arts was insightful, and helped open up new ideas and new perspectives for you.

- Joy is a big part of disabled experience and human experience.

- So as we close, we pose one more question to our artists and providers, what brings you joy?

- Things that bring me joy... (chuckles) - Uh, what brings me joy?

Oh... - Oh, that's a good question.

I like seeing construction work.

I like seeing big use construction machines being built.

- Being outside, discovery, taking care of people.

- The spring in Minnesota, I mean, the sun.

- My cat, Indiana Jones.

She's adorable.

What brings me joy?

- Ice cream.

Thank goodness for ice cream.

- My family brings me a lot of joy, my friends.

- My ability to help people and make a difference.

- Anytime I see patients taking steps towards thriving.

- What really brings me joy is helping others.

- Is the ability to capital B, capital E, BE.

- Life brings me joy.

- Just having fun, that's what brings joy to me.

(calm music) - [Announcer] This program was produced in collaboration with the Center for the Art of Medicine at the University of Minnesota Medical School.

And funded by the Minnesota Arts and Cultural Heritage Fund and the citizens of Minnesota.

(calm music)