>> From WXXI News.

This is Connections.

I'm Evan Dawson.

Our connection this hour is made in Wisconsin with a young woman named Ellie.

Ellie has vision challenges and as her parents explained in a video for Special Olympics, she was heard by doctors throughout her life but not listened to.

That's until she met Dr.

Kelly.

Neppel Kelly is a clinical director for Opening Eyes at Special Olympics Wisconsin and a regional clinical advisor for Special Olympics North America.

She was honored with the Global Golisano Health Leadership Award for her work with people with intellectual and developmental disabilities.

And when you think of the Special Olympics, Olympic style sports training and competitions might come to mind.

But as our guests will explain this hour, it is more than that.

Improving access to health care for people with intellectual and developmental disabilities.

People like Ellie is a priority.

Research shows that members of that community do not have equal access to care, and do not have equal access to quality care, as compared to patients who are not in the disability community.

This hour we're talking health, sports, the Special Olympics coming back here, and we're going to talk about being part of the games that are coming up here.

And as reported by our colleague WXXI health reporter Racquel Stephen, the games bring in about 900 contenders and coaches from across the state.

The seven sports spectators will see range from cross-country skiing to figure skating and more.

And I'd like to welcome our guests here in the corner.

Josh Meltzer is back with us.

Associate professor in the School of Photographic Arts and Sciences at RIT.

Welcome back.

Nice to see you.

>> Thank you.

Evan, great to be here.

>> And next to Professor Meltzer.

Welcome back.

Cori Piels Special Olympics athlete and mentor.

It's always nice to see you.

How are you?

>> I'm good.

Thank you.

>> Great to have you across the table.

Let me welcome Furqan Alwaely, who is a dental provider and faculty member at the Eastman Institute for Oral health.

Thank you for being here.

>> Thank you for inviting.

>> Me and Jess Dauvergne is the director of the director of Health programs for Unified Sports and Special Olympics New York.

Did I get the promotion right?

>> You sure did.

Thank you.

>> Welcome.

Thank you for being here.

So we're going to welcome in our second half hour, one of our former colleagues at WXXI, Natasha Kaiser, who's a photojournalism major at RIT.

But a lot to talk about here.

The games are in Rochester, coming up in less than a month.

Friday, February 22nd or 20th.

Saturday, February 21st.

And again.

The sports include alpine skiing.

Cross-country skiing.

Figure skating.

Floorball.

Gymnastics, snowboarding, and snowshoe.

Professor Meltzer, what's your role in all of this?

Here, tell us the story.

Take us kind of back a little bit for people who might have missed past years.

Conversations on this.

>> Yeah.

my graduate professor, Rich Beckman at the University of Miami, had been working with Special Olympics North Carolina, Chapel Hill, USA World Games throughout his whole career and was always involving his students.

in some of that coverage and I was lucky enough to be one of his graduate students and was invited to the World Games in Los Angeles.

So I actually started at the world level, and now I'm moving back to more of a local level, sort of the opposite direction that he did in a few years ago.

Jen Jenn Poggi, one of my colleagues and I were thinking about some opportunities that we could have with our students, and we looked into what the situation was here in New York, and we found out pretty easily and quickly that Rochester has been regular hosts of the Winter games.

And we sort of cold called some people in Albany and sort of gave them the pitch, and they were probably wondering a little bit about what what it might be like.

and we we started off with a few dozen volunteer students five years ago, and we're now running a one credit workshop with close to a dozen faculty, some upwards of 70 of our students.

We bring alumni.

Professional photojournalists and editors back to work on it.

We run a live website, the social media for New York Special Olympics.

And, it still serves, I think, the same goal that my professor his aims were, which is to expose our students to the population of people with intellectual and developmental disabilities so that when they are professionals, they are thinking about inclusion.

They are thinking about appropriate ways of using language.

They're thinking about all kinds of stories that present themselves, including sports, but certainly not limited to sports.

and they will, you know, from all walks of photography, we've had advertising students who have talked to us about who have been on this show, talking about how they will think differently when they start to cast for an advertising campaign.

we're certainly seeing different body types you know, gender, more gender fluidity in advertising, for sure, and the inclusion of people with IDD has been a big part of that.

and there's just we still have a lot to grow a long way to go.

and, and fairness and inclusion.

But this is a really big step for our students and one that that I see them, you know, do as they become professionals.

I see them pursuing these stories.

>> Well, we'll talk about what the students are seeing coming up here.

I want to ask Jess with Unified Sports, a Special Olympics New York, what you need right now, you got less than a month for the games coming up here.

What do you need most right now?

>> Yeah, we are looking for volunteers.

we are looking for healthcare students specifically because, you know, our health programs are very unique in that they don't happen in a clinical setting.

They happen alongside a competition or, you know, in our Winter games, it'll happen along with our closing ceremonies.

So we're looking for for students to come and volunteer and get experience working with the population outside of their curriculum and outside of, you know, what they currently get in their programs.

so students in any sort of healthcare discipline, we are looking for general volunteers.

We really aren't aren't as interested in how far along you are.

We're looking for anybody and everybody who's willing to learn with us.

>> If you're watching on the YouTube stream, you're going to see some of some of the students work.

Some of the photos here.

that will show you, I think, a good flavor of a wide range of both activities, athletes, sports.

just for volunteers here again, you just put out the call for volunteers.

What kind of a commitment is that?

How much work do you need done here?

>> Yeah, absolutely.

So we are asking for Saturday night, which is the end of competition.

And during our closing ceremonies, it's a 4:30 p.m.

to 8:30 p.m.

commitment.

and that involves setting up the screening stations, getting a quick training from our trained clinical directors and our professionals in the field.

and then screening our athletes as they go through and enjoy the, the culmination of, of their day and their state games.

>> You need again, how many?

300.

>> No, not 300.

>> You don't need 300.

>> We don't need 300.

Okay.

We're looking for about 100 and several different healthcare disciplines okay.

>> You still need a lot.

>> You still.

>> Need a lot.

And if they need if they want to contact you, how do they find you?

>> They can go to our website and just register to volunteer.

And it'll be one of the options right up there.

>> Okay.

And we'll have a link to that in our show notes coming up here.

More broadly, what is your role in all of this?

How do you describe it?

Jess.

>> Yes.

So I oversee our health programing for the state.

So, you know, we have at our Winter games, we have free health care screenings.

We have what we call performance stations, which are competition readiness stations for our athletes.

Hydration, nutrition, game day minds, things to prepare them for their competition the following day.

And then throughout the year.

We have several different fitness and wellness programs.

what our goal is at Special Olympics New York is the lifespan of the athlete and working health and fitness in alongside their competitive sports and their training for those sports.

So making sure that it's not, you know, 1 or 2 practices a week, your health and wellness continues every single day.

And automatically, you know, impacts how you do in your sports and your life.

>> I mean, we're going to talk to Dr.

Al Wally about exactly that role here, but I think to some listeners, to some viewers of this conversation, it might be surprising to have Dr.

Al-wali here.

Like what?

Why are we doing that?

When you think about what Special Olympics are, people who are not in the disability community are not closely connected to it, might think, you know, I see the Olympics.

I understand what the Olympics are.

Special Olympics are, a similar category.

Students with athletes with disabilities.

Why are we talking dentists?

Why are we talking different health care providers?

Like what is the connection here?

>> Yeah, absolutely.

So our Healthy Athletes program is what we call it has been around for the last 20 years or so now.

And what it is, is it's an answer to the ongoing need for access to care that we found with our athletes.

So, first and foremost, Special Olympics is a sports organization, but we do everything through the avenue of sports.

And when we realized that there was there was a huge gap in access to care for our individuals.

you know, for years we required a medical to participate.

And a lot of times our athletes couldn't get in to see a doctor to get that that medical form signed.

It was directly impacting whether or not people could participate with us.

And Special Olympics International answered that call by creating this Healthy Athletes program, where we train healthcare professionals in their fields to work with our athletes and to run free preventative healthcare screenings at our competitions.

And we brought we brought health care to our competitions and to our athletes as an answer to that call.

And in turn, we're also training the next generation of health care providers so that, you know, we're increasing access across the board and training people so that throughout their careers, they they know how to work with our athletes.

And and hopefully we're answering that problem.

>> Dr.

Furqan Alwaely is sitting right next to Jess, and I think your story is an interesting one here.

First of all, I don't know when you got into this kind of work.

If you envision doing it in this way here, how did this happen?

Take me down this road here.

>> So this is when we plan.

>> And get really close to your microphone so we can hear you.

>> There you go.

So here it is.

Just like when we started to think about to join like an inclusion with Special Olympics.

So this is like a two direction benefits for us.

The first one is to break the ice for our people.

That's with special needs.

And also to start, you know, other environment of the Special Olympics.

It is more comfortable more inclusive there.

So they don't hesitate to, to join us to do like some limited oral screening for them and then to guide them for the next step to care for dental health.

And the other thing, it is in the other direction.

It is like a good training for our providers and residents to have like the first step for inclusion and to be in close contact with the special needs people.

>> And how has that experience been for you?

>> it has been amazing because this is like our mission in Eastman Institute for Oral health and all this being done under the leadership of the chair, the chair of the department, Dr.

who can direct us how to train our residents and how to make them be in the exclusive and to go for a direct communication with the patients, with their parents or their caregivers.

>> You moved here with your husband, who's also a dentist, is that right?

>> Yes.

Yes, we moved for.

>> Rochester in 2019 when we started to join Eastman Institute for Oral Health.

>> And it was you know, it was some work for you to kind of get in there and, and and now here you are.

>> Yes, exactly.

Because it was my passion just to work with, people with special needs.

I have to survival.

boys, from being, like, have an issue with with their health.

So I thought this is like a message for me just to proceed for this, like, direction and to be a provider and to train the future provider for people with special needs.

>> What a story.

>> the first one, when I reached for us my little boy, he got cerebellum, ataxia.

And with a long term and with amazing trained providers, he, like, get, like, really good progressing with this.

And the other thing that's my older boy in 2019, as soon as I reached for Rochester, he got drowned in a pond.

And that's make like a traumatic experience for me.

So eventually he's a survival from traumatic brain injury.

>> Oh, wow.

>> So I, I guess, like, this is like a two message directly for me.

Thus, I have to, because I saw how the provider did.

They did amazing with my boys.

So I think now it is my mission to train others just to go to complete this.

Like a continuous education, not like a mental education for caring for patients and people with special needs.

>> You are doing such important work.

That is a really beautiful story.

Thank you.

and you know, Jess, I'm sure you see a lot of stories like this, but why is it that athletes in this category, or people with disabilities in general, are not getting the level of care that they need?

>> Yeah.

You know, it has to do a lot with has to do a lot with services that are provided.

And, you know, for years, individuals with I.D.

were institutionalized.

And so when it came to treating those individuals and providing health care, there were doctors that would go into the institutions and provide that care.

And and as you know, we've progressed in inclusion in our communities.

Many of our athletes live independently or live in assisted living programs on their own.

But the, you know, increase in access to health care didn't follow that that movement as well.

And so where, you know, there was there were doctors who were trained in working with the population and they used to just have to go to 1 or 2 places.

Now our athletes are out in the community and individuals with IBD are out in the community and living on their own.

And finding health care providers who are trained to work with them, who have the patients who have the knowledge.

you know, Cory and I were talking earlier about even just the questions that are being asked and knowing that not everybody understands those questions the same.

That hasn't translated yet.

And so teaching the future generations of health care providers and making sure that students know what inclusion is, is, you know, half the battle in increasing that access to health care.

>> Well, let's let's talk to Cori Piels here.

One of our favorite conversations over the years.

And it's always nice to see Corey.

I do have to say, Jess, we have some listeners who have asked if they can attend the games here.

>> Absolutely.

Yes, absolutely.

Yeah.

Friday, February 20th.

Saturday, February 21st.

>> Friday the 20th.

Saturday the 21st.

Where's it happening?

>> Rochester.

Rochester Riverside Convention Center is where the opening and closing ceremonies are going to be, and the competitions are at various venues throughout Rochester.

all the information can be found on our website, which we can provide that link.

>> Corey, over the years, did you want big crowds watching you perform, or are you one of those people who wanted a quiet rink?

>> I'm one of those people who likes a lot of crowds.

>> You like the crowd?

>> Yes, I do.

>> Well.

>> Because it it makes me feel strong.

It makes me feel confident and makes me work hard.

>> So remind our audience what it is that you do and where where you have competed in the past.

>> I just competed at at World Games in Turin, Italy, and I came home with a medal, a. Bronze medal, which I'm very allowed to come home with.

>> Outstanding.

And what event.?

>> Figure skating, which is my all time favorite passion?

>> we've talked in the past about how truly outstanding of a skater you have become.

Yes.

And the work that you put in it has been a lot of work over the years, hasn't it?

>> Yes it has.

>> and at any point do you find yourself going, you know, I've had a few too many landing on that knee, twisted my ankles.

You know, I don't I can move into different roles here.

How do you feel about still doing it?

>> Well, if I fall, I don't make a big deal out of it.

I don't cry, I don't wimp, I don't do all those things.

Sure, I just get up.

And do it.

Just keep.

Trying until you get it.

>> Well, the.

The world's eyes are are going to be on I. I hope special Olympic athletes and and games happening in different places.

And certainly with the Winter games coming up, a lot of people are going to be watching the figure skaters out there.

when you watch the Olympic Games and you obviously you see yourself out there, you've you've competed.

>> Yes, I have.

>> But figure skating feels so out of reach for me.

I mean, it's so specialized.

It's so difficult.

How did you get into it in the first place?

>> I been watching ice skating on TV and there's a special figure skater than I've been.

Admired.

And her name is Michelle Kwan, and she admired me.

She works hard.

She.

She glides across the ice, going.

It's like an angel floating.

>> She is one of the greatest of all time.

She is, of course.

>> Yes.

>> and when you watch someone like Michelle Kwan, she's known for her grace and artistry.

And she's also, you know, obviously, she's pretty good at spins and jumps and salchows and lutzes and loops.

How am I doing with the technology?

The terminology.

Pretty good.

>> Very good.

>> Pretty good.

>> Yeah.

>> All right.

Not so bad.

But for you, what's the hardest part of it I mean is it, is it the spins and sort of the grace.

I mean are there different things that are harder.

>> there are different things are harder now that I'm learning.

But the part that I'm teaching myself is to is going over and over and over.

Don't give up work.

You want to maybe.

Practice them at home, at the rink until you get it.

>> What?

Realistic?

what is that?

Practice schedule.

Well, for you, I'll.

I want to ask, in general, for athletes who get as far as, you know, the stages that you've been on and other competitors.

But what about you?

What is your practice schedule like?

>> My practice schedule is I skate three times a week, so I skate my regular lessons on.

On Mondays and Fridays from nine to 11, because I have a lesson and a. Was 11:00 and I go to the rink, I warm up, I. I have my music on with me and and on Sundays I, I, I skate with the special.

One big blades, bigger skating team from 10 to 1050.

And then on on Tuesdays and Thursdays.

I just started a new job.

>> Outstanding.

>> Yes.

>> So you're very busy.

And figure skating, of course, is one of the sports being featured in Rochester.

With the Winter games coming up again Friday, February 20th.

Saturday, February 21st.

We'll have a link if you want to check out all the information.

If you want to attend.

If you want to plan to attend any of the ceremonies.

The sports include.

Alpine skiing.

Cross-country skiing.

Floorball.

Gymnastics.

Snowboarding.

Snowshoe and figure skating.

So when people are watching, whether it's the games here or when they're watching the international games coming up, what are you looking for in figure skating?

What when you're seeing.

Because I never understand how they get the scores that they get or why someone gets a deduction.

Clearly a fall is tough and but but what are what are you looking for as a competitor yourself when you watch others for whether they're doing it at the highest level or doing it well?

>> Well, I just encourage them.

To do their best because winning is not it's not all about winning all the time.

It's about trying your best and not always being perfect.

>> Getting up when you fall, right?

Yes, it's always heartbreaking when you fall.

You fall.

Yeah, you're watching the Olympics.

>> You're like.

>> Four years of training and they they go down but they get up.

Yeah.

They get up.

Keep going.

I mean, that's life in many ways, isn't it?

and it sounds like you're doing great.

Yes.

You got this new job.

>> Yes.

>> How would you say your life is right now?

>> Very well.

And I can tell you the job right now.

Actually.

Yeah, I just started working with a Gozzano Institute of Nursing with people with IDD as an inclusion specialist.

>> Awesome.

Tuesdays and Thursdays?

Yes.

And are you you.

Seems like you're enjoying that.

>> Yes.

And my goal is to teach in educate health care.

How to treat people with IBD, with experiences like I went through.

>> Yeah.

Are you able to share a little bit of that, Cory, if you don't mind?

>> Absolutely.

>> Tell us about what your experience has been like in the past.

>> My experiences with doctors and nurses have not been so treated well.

I've had doctors ignore my aches and pains.

She's fine.

I don't see anything else going on.

Okay.

He walks out.

The door.

Okay.

not getting to know the patient.

Not knowing, not asking what kind of interest you have.

What sports do you do?

do you have any, like, other hobbies?

Those kind of things.

also, when you go to get your height and weight and your temperatures and all that, I get the question by nurse tech.

Nurse technicians asking you the last question is, what is the level of pain you have?

One through ten.

The question is, I don't know.

What does that mean?

Can you be more specific than that?

Do you?

I mean, I want to educate these health care because I want to help these, like, they need to have like a, a. Facial expression pictures, if they're sad, if they're mad, if they're what?

What body parts.

Do you have aches and pains from your head?

Your your toes?

They need to be more specific than just saying what is the level of pain?

>> Do you think that that message is getting through?

Is it getting better?

>> Well, not yet, but if I educate them, it will.

>> Yeah that's great.

Yeah, professor.

>> Go ahead.

You you you talked about Dr.

Kelly Noble, who?

I filmed a short film about.

She's an optometrist.

And one of the things that she told me, which is right in line with what you were saying, Corey, is, for example, optometrists might ask a patient, do you read?

And the answer might be, no, I do not read.

And so they said, well, then you don't need reading glasses.

But this person busts his tables for work.

He plays cards at night.

He needs reading glasses for different things, for the same things that you and I need reading glasses for.

So it's those kind of conversations.

And I remember being at the World Games, I believe it was maybe in Austria and there was a healthcare discussion where an Irish athlete was talking about.

And she said, I'm 34, I'm a sexually active person.

I shouldn't be going to a pediatrician anymore.

I mean, long ago.

And so some of these things are still happening.

And that's the reason why we need people like Corey to talk about their own experiences, why we need a doctors that are training the next generation to ask questions in a different way, to think about it in a different perspective, and the same way that I it's important for me that my photojournalism students can approach people in different ways than they might approach other people.

So it's around these educations.

We have to be more open minded about not understanding that we don't know everything.

even if we're professors and doctors and that kind of thing that we really don't know.

>> It takes some humility to take the lesson.

I think and I hope I mean, Corey sounds confident that they will listen, but I want to ask we've got a doctor at the table.

Dr., what do you think of when you hear Corey talking about these difficult experiences with with doctors?

>> Yes, exactly.

I agree with Corey that especially the main issue and the main gap is the communication and which is the main part of the inclusion.

When we started to train our future providers for the inclusion, the the main thing is first like to go slowly.

And the main thing is the communication and the prior to the visit like communication with the caregiver, with the provider or with the, with the person himself.

So thus give a good advantage for us.

That's how we can proceed.

And what's like the, the facility that can provide us from tools to equipment that can give like the best communication and then to get the best result for the service.

>> Yeah.

Jess, what are you hearing in Corey's experience?

I mean, it's tough to hear that, frankly, but.

But what do you hear?

>> Absolutely.

Well, the harsh reality is that the majority of education programs to train health professionals doesn't have dedicated curriculum towards working with individuals with IBD, which for anyone listening, we keep saying IBD that's intellectual or developmental disabilities.

And, you know, so unless you have an experience from your family, from your high school, from volunteering with Special Olympics, several doctors, nurses, other health care providers are going through their entire education without treating an individual with IBD.

And, you know, there are several barriers with insurance and and outside things that we can't control.

But for a doctor to have an individual come in and not be able to understand them, or the individual can't understand the doctor and what they're asking, that's that's not going to help anybody.

so the work that Corey's doing, the work that you're doing, the work that we're all doing here with these health programs, is is really crucial in training the next generation of, of healthcare providers, but also giving our athletes access to care where they are.

>> You know, Corey, beyond just the the question of how the medical system is doing in taking care of you, taking care of people in the IDD community I just want to ask you, in general, if you feel like society has become more inclusive, more welcoming in during the course of your lifetime.

>> Some what I've had some positive, and I've had some positive negative.

I've had.

Nurses who have turned my mom away because she wasn't allowed to be with me.

If I had surgery or that kind of stuff, and you don't want to turn them away, they they want to be there with their.

Their loved ones.

Because you never know what kind of questions the doctors and nurses are asking because.

You're so nervous and you have all these.

>> xAI.

>> Yeah.

>> You don't know what questions that they're going to ask you.

So have your caregivers with you.

>> I mean, the average person of any background, I'd not not in the disability community feels anxiety.

Going to see a doctor.

There's always going to be anxiety.

>> Absolutely.

>> Yes.

And I think that your point about taking really I think intentional care to make sure people in the IDD community have what they need, whether that's a caregiver, there, good communication.

it's it's really important.

And I know you're going to be successful in the work that you're doing there.

I mean, you clearly feel like you're in the right place.

Thank you.

It's really important work.

what else is I mean, how else is life for you these days?

Everything pretty good.

Otherwise, every.

>> Yes, I, I live on my own.

I cook healthy foods.

I exercise I just have fun.

>> So it's a good life.

>> Yeah.

>> You cook healthy foods, though?

>> Yes I do.

>> Doesn't that take more time?

>> As much as I like to cook, I don't like to cook that much.

But yes.

>> no.

I'm really glad to catch up with with Cori Piels, who's talking to us as both an athlete and talking about the work that she's doing in this community.

to help educate people in the medical profession about working with people in the disability community.

And this is a conversation about the games coming up here, the Special Olympics and the Winter games coming up here.

But as you're seeing it is such a, I think, a broader conversation because of all of the challenges that people in the disability community face, not only to get on the ice and compete, get in the games and compete, but also just have the health that they need to be able to compete, have the health and that they need to be able to live in our society and have the care that they need.

So we're talking to a full panel, and we got to take our only break of the hour, and we're going to come back and and welcome one of the professors, students and I think colleagues now who's really on her way to being one of our colleagues at XXI.

We hope we're going to talk about what students are learning documenting the games, telling stories like Cory's, and getting to meet a lot of the people involved.

So we'll take this only break.

We'll come right back on Connections.

I'm Evan Dawson Thursday on the next Connections in our first hour, state Senator Jeremy Cooney joins us.

Reacting to Governor Kathy Hochul state of the state address, Senator Cooney will talk about what he thinks New York State should be prioritizing in 2026.

In our second hour, some local Catholics join us talking about the early information they're getting from the papacy of Pope Leo and what they think of the first American pope.

>> Support for your public radio station comes from our members and from Mary Cariola center, supporting residents to become active members of the community, from developing life skills to gaining independence.

Mary Cariola center Transforming lives of People with disabilities.

More online at.

Mary Cariola.

>> This is Connections.

I'm Evan Dawson in past conversations, you might have heard Natasha Keyser with us, who is a photojournalism major at RIT, former intern for WXXI News.

Frankly an extraordinary intern at WXXI News and is going to have a great career in journalism.

Wherever you end up going, it's nice to see you back here.

>> It's always great to be back.

Evan.

Thank you.

>> And come on, Professor Meltzer.

I mean, this is going to be a star here, don't you think?

>> One of many.

Yes.

>> So, Natasha, I was surprised to see you haven't been in touch in a little while.

I didn't know that this was.

That you were going to be one of our guests today, and.

So take me through some of what you have learned with this experience and tell listeners about what you've been doing.

>> Yeah, I'm always glad to be back.

And it was a little bit of a surprise to me, but I'm always happy to work with Josh.

We worked last year together on the Special Olympics, documenting.

I took his three credit class and it was it's it's so great to learn about a community that you're not a part of.

I think that's one of the best parts about journalism and photojournalism specifically, is being able to document communities that you're not a part of and learning about them.

my mother is partially paralyzed.

She's handicapped.

But when I went into this class, I had no idea what it was.

I didn't know that there was these different levels of distinction and learning about that and learning about how to interact with members of the IDD community respectfully, and also treating them just the same way we are.

We are the same.

There is there's limited difference.

And being able to report respectfully on that is it's it's invaluable.

Like it is it is amazing.

>> Awesome.

What have you learned in your relationship with your mom in this way?

>> Yeah.

I, I acted as a little bit of a, as a caretaker growing up.

You know my dad wasn't in the picture for most of it, so being able to learn how to take care of my mom and interact with my mom, and also especially Corey was talking earlier about medical stuff like, it is so important to understand that people with disabilities, even if they're not like you even if you can't see them, you can obviously see my mom's, but even if they're not visible, they get treated so differently in health care situations like it, you can't even begin to describe the differences that medical providers have towards patients that have disabilities that are just listed, even if they're not, even if they're not visible.

And it made me think very differently, even going into the class before, I really understood the distinction with IBD, that there was that medical difference.

And, you know, I think it's great with health care providers to like seeing healthy athletes.

Last year was it was awesome.

It was it was so great to see, and document the, the volunteers and the providers that were giving that health care service.

I think it was it was excellent.

>> And, you know, I think there is a there's an authenticity in the way you're describing what it means to be a journalist who's trying to cover a community that you have not been a part of, and showing the respect that still says, I'm not trying to document this in a way that treats this as some sort of exhibit, some somewhere far away, instead of just simply documenting fellow human beings who may have, as you said, limited difference, but difference nonetheless.

That distinction is not always easy, and it's not easy for me sometimes.

I mean, I'm clumsy.

I'm sure I fail in many ways in that regard.

We're all learning there.

do you want to talk a little bit about what you've learned in that way?

Because I really appreciate you making that point.

>> Yeah.

I think verbiage is so important, like learning the differences in, in the ways of speech that we use with, with journalism or just speaking with people from different communities and especially with, you know, the language that has been used around individuals with intellectual and developmental disabilities for a very long time has been has been horrible.

Right.

And and learning that not only as journalists but as people is is so imperative to being able to have these conversations and these and being able to be a part of these communities respectfully and documenting them respectfully.

>> Professor Meltzer, I mean, I think that there's a lot of wisdom there.

And as someone who's teaching, you know, future journalists and future, you know, photographers who are going to document different communities, what do you hear in Natasha's answer that you think we can all maybe learn from?

>> Well, I mean, I think what she's pointing to is a word that I use a lot, which is the universality in a story.

So, you know, we tend to feel like we're in a really polarized society, but really we're pretty similar around the world, you know, we want the same kinds of things for our children.

We may have different economics.

We may live in different countries.

but we really want a lot of the same things.

So when we do, when we make stories, when we produce our, our journalism work, one of the goals that I always try to encourage students that I try to do with my own work is to try to make it as universal as possible.

So, okay, well, I don't have kids.

How am I going to relate to a story about kids?

how what?

Is there something unique?

There's something universal about that, that person's experience that I can relate to.

and I think with, you know, I'm a parent, Corey talked about some of the challenges being in a medical situation and having that anxiety.

what the dentist explained to us about her own children, you know, resonates with me as another parent.

and, you know, I think we can bridge a lot of gaps when we try to break down those barriers.

So instead of making a story that's like, well, look at these athletes, how different they are.

Corey trains the same way Michelle Kwan does, you know, I mean, her goals are the same.

She works as hard as Michelle Kwan did when she was in her prime.

You know, I mean, when we talk about people in their differences, we ignore some of the things that really makes us much more similar.

and finding those universal themes is, is really important.

So when doctor talks about, like the other 500 reasons you might want reading glasses in addition to reading, that resonates with everybody, I mean, I can't do much of anything without my glasses anymore.

you know, I can't cook.

I can't, you know, do all the things that I like to do.

And reading is, of course, one of those small things.

But if that's the way we ask the question from an optometrist point of view, we're missing like a whole quality of life issue.

So, you know, it's just one example.

>> I'm going to take this a little further afield, but I always appreciate the conversation with you.

And when you talk universality and seeing human beings just as human beings, not as others or different in a way that is threatening, I think I had this naivete, especially when I started hosting this show in 2014, and some of the early conversations, if I go back and listen, were probably really naive because I spent a portion of my career thinking that there's no perfect straight line of call it progress, whatever.

But I think the world is more connected and people are, are, are finding, I think, a comfort level in saying everyone is human beings, whether you're from the same country or not, whether you're the same race or religion, creed, disability or not.

And it does not feel that way anymore.

It feels much more fraught than I would have thought a decade ago.

It would ever feel again in my lifetime.

And I listened to conversations about the way people have suspicion, even just about someone who comes from a different part of the world.

And I don't know exactly how we got there.

Maybe there's there's something culturally or even economically, to profit from fear.

Maybe that's part of the story.

But I'm concerned, and this isn't meant to be some sort of someone's going to parody this as some sort of woke screed.

It's not.

It's just observing human beings and the way we fear or don't fear each other.

So why was I so naive a decade ago?

Let me start there.

>> Well, I mean, you know, when Corey talks about how it takes longer to make a healthy meal, I mean, I relate to that.

Exactly.

I eat quite healthy food and I like to cook, but I know that it takes longer and it's sometimes the pain and it'd be much easier to pull out some frozen fried fish, right, for your kids.

So, I mean, we can relate on all kinds of things.

We actually spend most of our day doing.

and, you know, I think that as journalists in the, in the, the world of shrinking newsrooms and one of the things we've really lost are these feature stories about people that, that, that don't talk about politics and division.

They talk about, like how someone's living their life or something really cool.

Someone's doing that you might relate to.

We don't see a lot of those stories.

So, you know, part of what is great about the Special Olympics and the Winter games especially, it's, you know, speaking about volunteers, I mean, it's the most positive environment you could ever be in.

I mean, the opening ceremonies is like so amazing just to witness it.

and you know, so being around that environment, I think is really engaging.

So for my students, you know, when we talk about we had a special class Natasha referenced in addition to this workshop, we had a class that was around stories in the community of I.D.

and, you know, we talked a lot about quality of life issues.

So the really the things that we all are struggling with housing, health care affordability jobs insurance family relationships, there's no difference in any of our lives when we start talking about those issues.

We all have those concerns when we focus on the differences that we have, we ignore a lot of the main challenges that really do keep us up at night about like, I can't afford my house anymore.

How can I make sure I'm feeding my children healthy food?

Or, you know, making sure that their disabilities are met or whatever it is?

So those are the things that actually put us and relate us much better together.

And we don't see as many of those stories because it's maybe it's easy to focus on difference.

>> Yeah.

And you're right, though, with shrinking newsrooms, I mean, it wasn't I think Steve Hartman is still working for CBS news.

It's just one example that comes to mind.

He was one of my favorite feature reporters, and he used to I think he threw a dart behind his back and it would hit somewhere in the country and wherever that was, he would go to that town, big town, small town, wherever.

And then he would kids.

There was something called a phone book.

Natasha, can you believe that?

There were phone books and he would open the phone book and just find a name.

Go like this.

And any name he would go to, the going to that person's house, he's going to meet them and he's going to tell their story.

If they'll let him, because the the series was called Everyone Has a story.

And the premise was everybody has their own struggle, their own story.

That's worth hearing.

Whether you are in a small town, in a place you've never heard of, or the biggest city, people have value.

I mean, it was beautiful and there's a lot less of that kind of storytelling now.

It's a lot more quick, dark, frightening, you know?

I mean, I don't know if it's the platforms or what.

>> And I think if you look at this, this population in the Special Olympics, you know, I mean, Corey is a very serious athlete, but she doesn't spend most of her day training or most of her week training.

She spends a lot of her day going to work shopping for food, cooking, entertainment, all the kinds of things that everybody else does.

And so one of the unique things, I think, that people often miss about Special Olympics is I always this is a bad way of saying it, but I consider it like the gateway drug to all the other more serious issues that getting people in this population to talking about independent living and housing and health care, so that healthy athletes screening is it's a part of the games and it's during closing ceremonies.

Everybody's having a good time.

But the serious part of it is that, you know, I think Corey can maybe give an example, but like, you might just like get a routine screening and the doctor or nurse might find something actually very serious wrong with you.

And the reason for that is that we know that people with IBD go to frequently for regular checkups because of all the things Corey was talking about those barriers.

And when we go to our dentist every six months, that's how we find cavities, and that's how we find gum disease.

And when we go get a checkup in our physical every year, that's how people find cancer.

I mean, and so, you know, it's easy to say Special Olympics is a sporting event, but really, the bigger issues that we don't often talk about within the population, which we can all relate to, housing, health care, employment, relationships, all that kind of stuff.

That's actually what occupies most of our day.

And I know Corey was relaying during the break a story of a screening that was like, very fruitful for you in your own health care.

Can you tell that you're willing to share it?

Yeah, yeah.

What story from the winter from the World Games with your eye.

>> Yeah.

I'm sorry.

I went to I the healthy athlete at at World Games when I had my eyes checked and they found something strange.

And I didn't know what it was, but I didn't have anyone with me to understand what was going on.

And that was odd.

>> Okay.

And did they did they take care of it or was it.

>> No.

they said they kept, like, going through, checking my eyes over and over.

I didn't know what was going on.

It took hours and hours of doing it.

And then they didn't say anything.

>> So, yeah.

Go ahead, Jess, I know you want to jump in on the screen.

>> Yeah.

Corey, correct me if I'm wrong at that screening.

If I remember the way I've heard you tell it before.

they identified that you needed you needed glasses or a different prescription of glasses, right?

That you hadn't previously had.

And so they found a few things that that you didn't really know were things that you had to address.

And they identified that at the World Games, at the Opening Eyes screening.

>> Yes.

>> Yeah.

>> So interesting.

>> Yeah.

Yeah.

I mean, you're kind of who knew, right.

>> Who knew.

>> But that's just part of the point here.

So tell me a little bit more about the screenings.

>> Absolutely.

So they're preventative health screenings.

We go over everything from general health education and sun safety and tobacco cessation to actually having people go through and get their eyes checked using the same machines that you would find at the optometrist.

And and like I said, the point is we we train new health care providers, but we also give our athletes a much more relaxed way to go and get this preventative health care.

And if they're flagged for needing follow up care, which oftentimes individuals are we work with providers in the area to get them the follow up care that they need.

So these clinical directors, we call them.

So each screening discipline has a trained health professional who's gone through training with Special Olympics.

their role is not just to set up the screening train.

Those volunteers see the athletes, but their role is also transitioning for that follow up care and helping us connect athletes with any sort of, you know, extreme health care needs that they might have, like needing hearing aids or needing glasses, or if they just need to go to see the dentist a little bit more regularly, things like that.

So over the years, we've found we've found several different things that our athletes didn't know they needed to address.

And the nice thing is that for the most part, we have providers right in their backyard that they can go to and get that, get that health care.

>> It's another just a great sort of component of the full package that we've been talking about here.

I want to remind listeners we're going to have show notes that you can in our show notes, we're going to have links to information if you want to attend the games coming up here.

Friday, February 20th, Saturday, February 21st.

Here, Natasha, before I let you go, you know, having now covered it last year.

Yes.

how do you as a, as a journalism student and as a journalist, but also in photojournalism, whether it's with the image or just telling a story, how do you document in a way that is I mean, really descriptive without sort of, you know, like telling the realistic story?

in a way that is powerful but still just a straightforward story of humanity.

>> That's a good question.

I think the way I look at it is I when I go into these scenarios, I'm not thinking, okay, how am I gonna frame this in a way that I think specifically tells some kind of narrative?

I just document it the way I see it, which is, I think what most photojournalists.

>> Don't come in with a narrative in.

>> Yeah, like in my mind, I'm not coming in being like, okay, this is a different community that I'm not a part of.

I need to, like you need to be aware of the fact that when you document you're not a part of this community, right?

They may they may look at you and go, okay, well, who are you to tell my story?

But that's when you when you approach them and you explain to them who you are and why you think it's important to document it, but you don't document it in any other way differently than you would another story right down the street.

>> How's that answer, Josh?

>> Yeah.

That's great.

I mean, you know, and it's not any different from, you know, probably I can't speak.

I'm not a medical provider, but I would imagine some of the same things.

So in terms of like asking questions about like, you know, I don't know this community, I don't know what their sensitivities are to dental equipment or things.

And so if I knew that and I could explain and say, well, what, what, what fears do you have or what concerns do you have?

And asking those questions?

you know, we were talking some in class about, you know, thinking about how we ask open ended questions that, that, that are allowing our, our subjects to tell us things that we couldn't have known to ask.

And I think that's one of the things that we kind of overlook.

We think we know the questions that we need to ask or the dental provider, the medical providers know the steps to cleaning a teeth for sure, but there may be preliminary steps or conversations or even just like addressing the person and looking at them in their eyes and their parent might.

One of the things that I've heard from some, some athletes is that they never got talked with.

They were talked around.

So the parent was there and the provider would lean over and sort of like, ignore them.

And they're perfectly capable of answering for themselves.

And maybe, Corey, you can acknowledge that.

But that's one of the frustrations.

And even someone who's nonverbal should be looked at.

They can understand you.

They should be communicated with, you know, rather than sort of going around them.

So one of the things, for example, that we do in our, in our classes is, you know, we talk about that very thing, you know, there may be a parent there.

And so you're your comfort level maybe.

Well, I'm going to just talk to the parent because that person interacts with me in a way that I'm comfortable versus really, you know, really addressing the person that you're doing the story about.

>> Well, extraordinary work in a lot of different angles and from a lot of different sources.

And Josh Meltzer, a professor in the School of Photographic Arts and Sciences at RIT and your colleague Jenn Poggi as well.

Thank you for coming in and helping tell these stories to our community.

Thanks for coming back here.

>> Thanks for having us.

>> Appreciate having you.

Corey.

>> Yes.

>> Good luck to you.

>> Thank you very much.

>> It's always great to see you.

Come on back anytime you want.

Thank you.

And I know this is a fun time of year here.

>> Yes.

>> Congratulations on all your success.

>> Thank you very much.

>> Thank you very much.

to Natasha Kaiser.

Nice to see you.

>> It's always good to see you, Evan.

>> Good luck to you.

Thank you very much.

Here, I want to thank Jess Dauvergne as well.

With Special Olympics New York.

They need volunteers.

So get hooked up there.

Nice to see you.

>> Absolutely.

>> Thank you.

And our thanks to Dr.

Furqan Alwaely as well.

Thank you very much for being here from all of us at Connections.

Thanks for being with us.

We're back with you tomorrow on member supported public media.

>> This program is a production of WXXI Public Radio.

The views expressed do not necessarily represent those of this station.

Its staff, management or underwriters.

The broadcast is meant for the private use of our audience.

Any rebroadcast or use in another medium without express written consent of WXXI is strictly prohibited.

Connections with Evan Dawson is available as a podcast.

Just click on the link at wxxinews.org.