Stories from the Stage

LISA IEZZONI: When I got that 9:00 a.m. call saying that he looked sick, and had a temperature nearing 102, my mind went momentarily blank.

NEGIN KARIMIAN: I think how lucky I was that day to have my sister with me.

She's always been an outspoken person, and that day, she was my savior.

He said, "That was insulting, at best.

"Can't you do better?

You're smart.

"Create something for us; our story, respectfully."

THERESA OKOKON: Tonight's theme is "Be the Change."

We tend to think of politicians, and world leaders, and powerful influencers as the ones who change the world.

But really, it's ordinary, everyday people who make a positive impact.

Tonight's tellers are sharing their stories of the challenges they faced, the people who influenced them, and the difference they made along the way.

IEZZONI: I'm Lisa Iezzoni, I live outside of Boston, and I'm a professor of medicine at Harvard Medical School.

I understand that your work and your research has been featured by The New York Times and NPR.

Can you tell us a bit about your work?

I have, for the last 25 years, focused on disparities in health and health care for people with disabilities.

And, over that time, I've interviewed probably about 300 people with different types of disabilities.

But the work that recently has been featured in The New York Times and on NPR, was from a survey I recently led, of physicians about their perceptions of and experiences with caring for people with disabilities.

And the reason that the results were featured is because they were somewhat horrific.

(chuckles) You know, physicians have not the kindest things to say, necessarily, about people with disabilities.

What motivates you to continue your work in advocacy?

This is my community, and this is one way that I can kind of, give back and try to improve the lives of people in the disability community.

My first scooter wheelchair died about 13 years ago.

I had started using that scooter, maybe 20 years earlier, because of difficulties walking because of multiple sclerosis.

The scooter and I had rolled thousands of miles together, and finally, unable to walk, I relied on it entirely to get around.

But that day, I was nervous.

It just didn't feel right.

Nevertheless, I flew from Boston, down to New Jersey to attend a meeting in Princeton.

The scooter stopped dead on the New Jersey Transit train platform at Newark Airport, never to roll on its own again.

Conductors pushed me on my dead scooter onto the westbound train, and pushed me off again at Princeton Junction.

There, a man came up to me, saying he saw I was in trouble, and offering to help.

My mind was racing, and I wanted to be left alone to figure things out, but the man stayed with me for 45 minutes.

That man was Michael.

He uses a Rehab Power wheelchair, like the one I'm in today.

His spastic arms tightly grip his chest, but his legs and feet are completely still.

He immediately claimed kinship of one wheelchair user with another, saying he wasn't going to leave, until he knew I was safe.

He gave me his home phone number in case I needed someone local.

I never intended to call him.

But the next day, on the five hour drive back to Boston with my dead scooter, I kept thinking, "That man was really nice to stay with me.

I should thank him."

An online search the following day, I found the name Michael, his phone number, and links to MS support groups.

I emailed him, and within several weeks, we became great friends.

He was born in Birmingham, England, nine days before I was born in Boston.

His type of MS is worse than mine, but we share many MS experiences, and we like similar art and music.

But what we both really value is being able to do what we can do, and we loved speeding around in our wheelchairs.

(laughter) I took many trips down to visit Michael during ensuing years.

It was about a ten minute roll from my Boston office down to South Station and Amtrak.

Michael's modest, but completely accessible home is about a mile from the Princeton Junction train station.

He lives there alone with paid home health aides who support his basic needs, like feeding, bathing and dressing.

When I visited, I assisted however I could; I did lots of organizing.

But we also took trains into New York City and Philadelphia.

We rode over the George Washington and Brooklyn Bridges.

We explored Central Park.

I especially loved his mother, who exemplified resilience and grace, and visited from England every year.

But, where I really could help Michael, was with healthcare.

I was diagnosed with multiple sclerosis during my first semester at medical school, ten years before the Americans with Disabilities Act.

I got my MD degree, but I faced brutal disability discrimination in medical school, and I was unable to complete training to become a practicing physician.

But, I know my way around doctors and hospitals.

And so, when several months later, Michael had his first major health crisis, I became his healthcare proxy and tenacious advocate.

I've spent countless numbers of days at Michael's hospital's bedside, then COVID struck.

When I got that 9: 00 a.m. call on April 20, 2020, from Tasonia, Michael's morning aide, saying that he looked sick, and had a temperature nearing 102, my mind went momentarily blank.

Then, it kicked into it's Michael's serious health crisis mode.

I couldn't train down, I'd have to do whatever I could from a distance.

Tests later that day confirmed that Michael had COVID.

Before then, Michael and I had talked a lot about his risk for getting COVID.

Because he needs so much daily support, he couldn't isolate himself to stay safe.

His risks of getting COVID were high.

As his healthcare proxy, I needed to understand his preferences for care.

Michael has long preferred that if his breathing or heart stops, that he be allowed to die.

No resuscitation.

Therefore, I knew he'd want to stay home when he got COVID.

But making that happen was hard.

Three amazing women agreed to help out: Nickie, Shelly, and Tasonia, like most home health aides, have second jobs, fortuitously in healthcare, and they figured out some way to cover him 24/7.

Over the weeks with COVID, Michael got really sick.

He pleaded with me to stay on FaceTime with him for hours, just simply watching as he breathed.

Although he wanted to stay home, he didn't want to die, and he pleaded with me, through his COVID terror, to reassure him that he would live.

I kept telling him to breathe in and breathe out so that he would.

By 10: 00 p.m., I was exhausted, and I would tell his evening aide that I was signing off.

That she knew where to reach me.

A couple of nights, I was sure that 2:00 a.m. or 3:00 a.m. call would come, that Michael wouldn't live through the night, but he did.

Michael turned the corner on May 2, he called me at 6:20 a.m... (laughter) his face aglow with a wide smile, telling me, he intended to live.

A minute or two later, he again looked ill and exhausted, but the seed of life was planted.

Michael recovered fully from COVID.

Sometimes, it was emotionally numbing, watching for hours as he took each difficult breath.

But this was something I could do for my friend.

After all, many years earlier, he, then a stranger, had refused to leave me, unable to walk, stranded on a train platform.

Thank you.

(cheers and applause) KARIMIAN: My name is Negin Karimian.

I'm originally from Iran.

I did my medical studies in Tehran, and then I moved to Netherlands, where I did my PhD after my medical studies.

And currently, I live in Medford, in Greater Boston area, and I work as a medical director in pharmaceutical companies.

What role do you think that your upbringing played in your decisions about your professional path?

Because of the difficulties that women in Iran have, my parents told me, "You need to become an independent woman, "both in your life, in your profession, your career, financially."

And that has definitely made an impact on decisions that I've made in life.

When you consider the story that you're telling tonight, why do you feel like this is an important story for you to tell?

I'm telling it because I feel it resonates with a lot of Iranian women.

The complexities of the layers that are in the story, talks about, um, the paradoxes that, uh, women in Iran experience every day.

It's Thursday afternoon, the last Thursday of September.

My friend "M", texts me, "Negin, I really do not feel like a bachelorette party this weekend."

I text her back and say, "I know it's hard, "but your friends have been planning this since months ago, you can't cancel on them."

In the meanwhile, I'm glued to the news.

A 22-year-old girl in Iran, my home country, has been killed by the morality police because of inappropriate hijab.

People are protesting.

More girls have been killed this past week in the protest.

It feels familiar, but it's also different.

I had been in the protests, back in 2009 in Iran, when the government cheated in the presidential election.

We were silently holding hands and marching, asking for our votes to be counted.

This time around, women are at the front line, burning their hijab.

The message is clear: we are all shocked, sad, angry.

We don't know what to do.

We're also proud of this bravery, and hopeful that there is going to be a global protest, in solidarity with the people in Iran.

And we both would be missing it because of her bachelorette party.

I'm remembering the day I was arrested in Tehran.

I was also 22 years old.

I was going back from the medical school library with my older sister.

I'm very thirsty and sweaty from all those layers of clothes that I had to wear: the manteau on top of my t-shirt, the gray pants, the black scarf.

And then, suddenly, this woman in black chador appears in front of me, and she grabs my hand very hardly.

She says my hijab is not appropriate and I need to go with her.

I'm very confused.

Out of all days, that day, I didn't have any makeup, I was wearing the loosest clothes that I had because of the heat, and my hair was feeling sweaty and gross at the end of the day, so I was intentionally covering it more than usual with my scarf.

The woman pulls me and puts me in the van with the other girls.

The van is guarded by two soldiers with guns.

My sister, not being able to convince this woman to let me go, starts negotiating with a male officer.

I'm afraid they will arrest my sister, too.

Her sleeves are folded up, she's holding... she's showing more hair.

I cannot believe it, somehow, she's convinced them to reconsider.

They tell me to sign an affidavit, promising that I will have better hijab.

My sister gives them a fake name, and signs a fake address, and they let me go.

At home, we casually mention it to Mom.

We don't even discuss it at length.

Two months before, my mom and my other sister had gone through the exact same thing.

Twelve years later, as I am watching the news, I think how lucky I was that day to have my sister with me, and how strong and brave she was.

She's always been an outspoken person, and that day, she was my savior.

My friend "M" and I continue texting about the wedding.

She's marrying a Jewish person, something that would have never been allowed in Iran, given that she's a Muslim woman; and I'm taken back in time again.

I've known "M" for 18 years now.

We went to medical school in Tehran together.

We weren't always as close, until, we found out we both secretly smoke.

(laughter) We used to exchange cigarettes and smoke in the darkness behind the mosque of the hospital where we were studying at.

(laughter) Ironically, we thought, nobody would think girls are so shameless to be smoking there, so we would be safe.

(laughter) This was, meanwhile, our male classmates were freely smoking and taking a break on the front porch of the library; one of the many rebellious things we did together.

Little by little, we found out how similar our underground lifestyle was, and we both had hopes and ambitions for a life on Earth that we knew we cannot get in our home country: to choose what to wear, who to love, how to live.

Once medical school finished, I said goodbyes to her and other friends and family, and left home.

I went to the Netherlands to do my PhD, and she stayed behind, preparing to come to U.S. We didn't know if we would ever see each other again.

After almost three years of losing touch, in the summer of 2014, we both landed in the U.S.; she in New York City, and I in Boston.

It has now been almost a decade of hard work, days and nights of loneliness, not seeing our families for many of those years, because if we leave U.S., we might not get a visa to come back in, and our families don't get visas to come visit us.

We've learned to not only be each other's friends, but also be each other's sisters, and each other's mothers.

We've now made a life for ourselves, and we always say all those years of hardship was worth it.

But we also always ask; why should it have been so difficult?

The room of my door opens.

My husband has arrived from the bachelor party of "M's" fianc.

He notices my new American passport on the couch.

I've just became a U.S. Citizen.

My second layer of security.

(applause) He's excited.

He asks me how I feel.

But my mind these days are only in Iran.

On Friday night, I drive to Hudson, New York, that's where the party is.

On the way, I'm listening to this Iranian song called "Baraye."

A song composed by the tweets of people in Iran, saying for what reason they are protesting.

The singer of the song is also arrested, by the way.

I have tears in my eyes, but I put on a festive face for the party.

It ends up being a very nice weekend.

We have brought a fusion of pre-wedding activities.

One of the traditions from where I come from, south of Iran, is a henna party, and a friend has secured some henna.

On the last night, while chilling on the couch, listening to some soft jazz, a friend notices the henna and asks what to do with it?

I explain, "Well, the tradition is to draw something on the hands of the bride."

"But what can we draw?"

"M" and I look at each other for a second, and I take the henna, and I write on her forearms: "Zan.

Zendegi.

Azadi."

The same word as the women are chanting in Iran: "Woman.

Life.

Freedom."

(cheers and applause) IVERSEN: My name is Mikhala Iversen.

I'm Afropean, born and raised in Copenhagen, Denmark.

I'm a jazz singer, and a storyteller, and a C.E.O.

of a tour company in New Orleans.

And part of your work is in storytelling.

So what is it about storytelling that you most enjoy?

Inspiring people... to heal.

And do you do that through music as well?

Because there's ways that music tells a story, too.

Well, music is the biggest healer of them all.

Singing is healing.

Dancing is healing.

Our music is healing.

Black music was never made to entertain anybody.

It was made to heal us, to reconnect us after we were broken, and separated, and divided.

The music is what carries us through.

It lifts up our spirit.

So yes, I absolutely use music, and I'm a jazz singer, so the stories of the jazz and the blues is part of the healing.

In New Orleans, they say, "Where are you from-from?"

That's not your ZIP code, that's your ancestry.

I come from a family of trailblazers.

My great-grandparents on my mother's side owned 717 acres in Osceola, Arkansas.

Unusual for a Black family in the late 1800s.

They got terrorized by White jealous farmers, and they fled the South, along with 6 million other Black Southerners, and settled in the Midwest.

On my father's side, my grandparents printed illegal pamphlets and documents to resist the Nazis in Copenhagen, Denmark.

I grew up in a revolutionary jazz house.

My uncles and aunties were people like Auntie Josephine, Auntie Eartha, Auntie Nina, Uncle Ben Webster, who gave me the nickname Little Big Mouth.

(laughter) Clark Terry, Ernie Wilkins and so many more.

My step-grandmother was Mattie Peters, of the Peter Sisters.

They called my mama, "Charlie Parker of the Kitchen," because she could improvise and throw down some barbecue ribs and some collard greens at 2:00 a.m., when they came home from the shows.

They were eating, and bopping and smacking, and drinking and dancing, and singing and crying.

They were loud and they were proud: writers, poets, journalists, composers.

My childhood home was a safe haven for superstars, travelers, and activists.

If you were fun, bright, or brilliant, you were welcome in our house.

I followed in their footsteps and became a jazz singer and an activist myself.

My debut album, Jazz Muffin, which is my love attack for jazz and reggae, it's the reason I got invited to perform in New Orleans.

I was invited for a Fourth of July, a celebration for women of color in music and I got invited back the next year, and the third year, I decided to stay.

I fell in love with the city, like my mama fell in love with my father, but I fell in love with New Orleans.

With the culture-- (slow drawl): How you doing, baby?

(laughter) I love the food, I love the architecture, I like the weather, I love the spirit.

And now, I was on my own, a free-range jazz singer.

On my first gig, in the break, they came up and said, "Good job," and passed me a bucket.

I said, "Thank you.

What is this for?"

"Well, that's your tip jar.

"You want to get paid, right?

Go out and get some money."

(gasps) I was already adjusting to no dressing rooms, no contracts, no minimum pay.

And growing up under all these divas, I was absolutely overdressed, with a bucket in my hand.

(laughter) I don't remember what I made, but I knew that this wasn't going to cut it.

I needed a second paying job.

I also needed a tax return to get a green card, to get my daughter here, and get her through college.

Tourism is a $20 billion industry-- yay.

(laughter) Turns out, waiters only get paid $2.13 an hour.

I'm a lousy waitress.

Next, tours.

Okay.

Tour companies don't have to pay you anything.

You are 100% commission-based.

So here I am, in the streets, swamp tours, city tours, plantation tours.

Absolutely far away from my comfort zone are workers unions, minimum wages, and free healthcare.

I decided to get a tour guide license because I thought that maybe touring and talking was more my jam than barking and booking, plus, I'd heard that tour guides got paid.

The big band was waiting.

I was flying down Canal Street on my bicycle... Bam-- I took a fall.

And with little to no healthcare, recovery would take months.

But this was a blessing in disguise.

PBS became my best source of untold stories about New Orleans.

And never before had I heard stories so intriguing and appalling.

It turned out that this was a place that my mother had told me about.

When I was just five, she said, "Baby... "...enslaved women snapped the necks "of their newborn babies to save them from slavery."

And that stuck with me like Beloved.

Back in the visitor centers, I'm hustling tourists, people are coming in, booking.

Black visitors are coming in and saying, "Where's our story?"

And I send them out on the stories available, knowing... ...that our story was whitewashed and reduced to something like this: (Southern accent): "Being a slave in Louisiana "really wasn't that bad.

"See, on Sundays, they would be given the day off, "and they would all meet at Congo Square, "sell little knickknacks, play the drums, have a great old time and buy their freedom."

A visitor, he came back furious.

He said, "That was insulting, at best.

"Can't you do better?

You're smart.

"Create something for us, our story, respectfully."

Now, I had gotten my tour guide license.

I was already inspired, and the stories were building up, my narrative was coming together, but how?

One day the phone rang, and a sweet lady from North Carolina, she said, "I'd like to book a private group tour, specifically Black Heritage?"

"Uh, thank you, ma'am."

So, I said to my boss, "There was this lady who called, she needs a tour?"

"Oh, yeah, sure."

And he never called her back.

She kept calling, he still ignored her.

The fire came out, I put my job on the line, I called her up and said, "Ma'am, I've just created my own tour company."

(laughs, cheers and applause) Thank you.

I said, "If you will give me the chance and the opportunity, "I will promise you and your group a wonderful tour, "but you can't tell the tour company, I'll get fired."

(laughter) She said, "Okay."

I rented a bus, I dressed in white, I wrapped my hair, and I snuck out the side door of the hotel that I was working in.

A colleague walked up and said, "Mikhala, where are you going?

What are you doing?"

"Oh, nothing much."

And I jumped on the tour bus, and it was full of seniors, Black seniors.

I was cooking for the cooks.

Welcome to New Orleans, the largest slave port.

The birthplace of jazz.

The birthplace of Homer Plessy, Louis Armstrong, Mahalia Jackson.

The birthplace of The Buffalo Soldiers It's the birthplace of the Freedom Riders and the Masking Black Indians.

And as we pulled up at Congo Square, I said, "This is where Duke Ellington started Jazz Fest."

And I said: It don't mean a thing If it ain't got that swing They sang: Doo-ah, doo-ah, doo-ah, doo-ah, doo-ah Doo-ah, doo-ah, doo-ah, doo-ah, doo-ah (cheers and applause) They listened and sang, shopped Black-owned businesses.

And ten years later, I'm still the only tour company that offers this on a daily basis.

(applause) Thank you.

(applause) I made the decision that Black-owned businesses has a place in New Orleans and the glory of our story is important.

I came to New Orleans to sing, but something much deeper was calling me.

And today, moving forward, I will always look back.

Thank you.

(cheers and applause)