>> From WXXI News.

This is Connections.

I'm Evan Dawson.

Our connection this hour was made in an exam room at a local urgent care facility.

The patient was a woman who has cerebral palsy and uses a wheelchair.

She had experience emergency room surfing, as she calls it, meaning moving from facility to facility to find a space and a provider that can accommodate her wheelchair and her health care needs.

At this particular urgent care, the patient says, a staff member looked her in the face and said, quote, you don't look like you have cerebral palsy, end quote.

Unfortunately, a statement like this was not new or surprising for the patient.

That's Jeiri j D Flores, a local advocate for people with disabilities.

She spent her life and career making inroads with medical systems to improve services and spaces for people with disabilities, and JD is the guest of the most recent episode of WXXI Move to Include podcast, hosted by my colleague Noelle Evans.

In this episode, she explains ableism in health care that she sees something people without disabilities might not recognize.

And Flores says it's hard for people with disabilities to call it out sometimes because, as she says, she doesn't always call it out because she still needs her doctor to be her doctor.

It's pretty extraordinary.

People with disabilities hesitant to call out problems because they're worried about losing the one doctor they have.

According to Flores, she has to manage her emotional response to jarring and offensive statements in order to get the care that she needs.

We'll talk about that later this hour.

But first, we bring you Flores story in her own words.

During this fifth episode of the Move to Include podcast.

>> This is the move to include podcast.

I'm Noelle Evans JD Flores learned early on that being understood in a doctor's office isn't guaranteed.

Sometimes it's a language barrier, but sometimes it's about ableism and not being heard or respected.

JD lives with cerebral palsy.

Her health care experience has meant constantly navigating the limits of health insurance and interacting with providers who don't have experience with disabled bodies.

She's faced serious gaps in health care from aging out of pediatric care and not having a primary physician, to not having access to basic women's health services.

In this conversation, JD talks about her journey, which has included speaking up for herself over and over.

She talks about advocating for your needs and why telling your story matters.

JD, thank you so much for joining me.

>> I'm happy to be here.

>> Brilliant.

To start, do you mind sharing like where your self-advocacy journey began?

>> Well, I like to say advocate advocacy because we attach self-advocacy to disabled folks all the time.

But there is advocates all across the board who are doing what I do just in their specific interests.

Right.

And so I like to just say advocacy.

But for me, it really started and not in a place that was rooted in my identity as a disabled woman.

It started because my mom moved to the States and doesn't speak English.

And so we were, I want to say, we were at an appointment and we had an interpreter, and the interpreter was like saying things that my mom wasn't saying.

And that kind of frustrated me, especially because I know Spanish.

Like, I feel like my mom worked really hard at the fact that I should know Spanish so that we could communicate.

Um, and I only say that because my little brother doesn't really speak Spanish, which I think is hilarious.

Um, because she doesn't speak English, she doesn't speak Spanish, but he listens to Japanese music.

And somehow, like our world just goes round.

But you know, in that instance, when this translator was just making stuff up, I looked at my mom and I was like, mom, that's not what you said.

Like he's just making stuff up like that.

He's just saying things.

And so then from then on, I kind of made that decision and I was like around ten ish where I was like, Ma, I'm going to translate for us and we'll be fine and we can navigate this and we can, um, you and I, we can do this.

What I didn't anticipate was that my mom will then take that as like, I will translate for any and everybody.

And I don't have like the best professional Spanish because that's not the Spanish I learned.

It's not the, you know, I don't have a lot of 25 cent words in Spanish because I it's just not what I learned.

It's not what I never needed it.

Um, so I'm not saying that like I'm on top tier translator, but I can get your message across and it's like a key pillar in my moral compass to make sure that your message is understood.

I'm just someone who is helping it along the way.

>> So starting at ten years old.

Yeah.

Do you remember what that what was going on at that time?

>> It was it was a medical appointment.

Um, and it was a medical appointment about me.

And so my mom was describing like things about my body, ways that I did things.

Um, I had a big surgery at ten and so there was lots of conversations that were had prior to that.

Um, and there is this stigma with physically disabled folks that sometimes we're lazy and sometimes we don't take like therapy serious.

And so the conversation was rooted in what my body was capable of.

And so my mom is describing all of these things.

And I think the man just kind of took all the words that she said and like, came up with his own assumption of me.

And then he said, whatever.

And that, um, was like, nah, that's not what she said.

That's not what she means.

And so I really didn't like it.

And I took offense.

Um, and so I just kind of made that decision.

Then.

>> Mhm.

>> Healthcare is like my big bad, like it's my greatest nemesis, I would say outside of English.

Um, and ableism because healthcare is so complicated to understand for anyone, right?

Regardless of your ability, it's just complicated.

It's folks that are perfectly healthy that don't understand what their health insurance covers, what it doesn't cover, or why you paid that co-pay.

So for me, my parents specifically moved to the States because they wanted me to have access to health care and to like not just health insurance, but like actual quality care.

Um, and that's not to say that quality care wasn't provided for me in Puerto Rico.

They just had to pay for it out of pocket.

And so I had very limited access to therapy specifically, like physical therapy and occupational therapy.

And then there were specialty doctors that I kind of had to see.

And so my mom kind of packed us up, and then she picked the coldest place she could find, which was Rochester.

I'm really like, I really want strong hospital to like do their research and see who was working their PR in the 90s.

Because somehow my mom Hurd heard about strong hospital in Puerto Rico in the 90s, and that's why she chose Rochester specifically for strong hospital.

>> Rochester, New York.

Yeah, here we are.

>> Yeah.

And so that's how it kind of happened.

And so because they had a clinic specifically for physically disabled children, she was like, I'm going to go, we're going to meet all the doctors.

And that's how I was officially diagnosed with cerebral palsy at the age of three.

But it all was connected to the big move here.

My mom migrated to this country with no credentials, right.

She was a direct service provider, so she didn't have any kind of licensure or anything like that.

She doesn't speak the language.

She doesn't have any money to her name.

So it's really easy to make the assumption as to who she will be and who I will be.

So when I was given Medicaid, right when my mom applied for it and I was given Medicaid, it was through the Social Security Administration office, which makes sense in theory, right?

Because I will always have cerebral palsy.

They're never going to be a morning where I wake up and now I'm no longer disabled.

Like that's just not how life works.

So I was given Medicaid through the Social Security Administration office and was then limited.

Right?

My mom was limited in the 90s because she couldn't make over a certain amount of money, which is $2,000.

She couldn't have this much money in the bank, and she couldn't make more than this much money a month, because I would then lose access to my services.

Right.

So they were limiting her early, right out the gate.

And then when I grew up into an adult, right, I still had the same Medicaid that was still it was still facilitated through Social Security Administration Office, which then put those boundaries on me.

I couldn't have more than $2,000.

I couldn't make over a certain amount of money.

If I had been given Medicaid or if my mom had been, you know, helped to get Medicaid through maybe perhaps our county services right through the state where it's funded through the state, then I would have had, uh, more access, right?

I would have been able to make more money.

I would have been able to save money in a different way.

And so it's my educated scholarly assumption, right?

And I go back to saying mine that my mom was getting was told to apply for Medicaid in this specific way because she happened to be a woman of color.

She happened to be a woman of color that didn't have any credentials or like they had no expectations that she would have a big job.

And they had no expectations that I would have a big job.

So it made sense to give me a very, like, strange, like, uh, part of Medicaid that was really complicated, that I couldn't really grow a future out of.

So my scholarly assumption, I don't want to put this out on anyone else is that, you know, I was given Medicaid the way I was given it because of racism and ableism together, because this is something that is, uh, structural, right?

It's in the system.

>> For those who aren't familiar with you, what is it that you do?

What is this big girl job?

>> Oh, so I am an advocate.

I work at a university.

And so a lot of what I do is helping to infuse advocacy not just in curriculums, but sometimes like guest lecture style or different projects, or even bringing in folks from the community.

Because while my story is cool, like there's other people that have cooler stories to tell, right?

Or just different stories, different diagnosis.

Um, and I'm physically disabled.

I can't speak to all disabilities, right?

I can highlight a lot of different things, but that doesn't mean that I'm an expert in all things disabled disability.

So I can really point out other folks who are like, oh no, this person might be better or this one might be better.

So that's kind of what I do on a day to day.

>> Right on.

So you had mentioned how this showed up for you.

When you have this, you call it you're a big girl job.

And how this transition from one type of Medicaid to another to dealing with private insurance, and that how muddy those waters can get.

Can you share a bit about how that showed up for you?

>> Yeah.

So I get this big girl job.

It took me a long time to get it.

I maybe I still celebrate my, my career's birthday.

Um, it's July 22nd.

Um, I try to get like a cupcake or a donut or something to celebrate that.

So once I get into this, uh, full time job with benefits, I start asking questions in the healthcare space, like, all right, well, I picked the, my employer offers private insurance.

So I'm like, all right, help me pick the one that will pay for my $30,000 wheelchair.

Like help me what, which one should I pick?

Like, what's the best pick?

No one has an answer.

No one knows anything.

And then I just picked like the most expensive that they have to offer.

Um, and then I didn't understand what that would mean for my Medicaid.

Um, because what I understood to be true was that I would lose the monetary benefits from the social care administration office, which made sense because I had a big girl job.

So like, don't give me money because I don't really need it.

And so the Social Security Administration office, they check in every couple of years, right?

They just do like this.

They give you a, a letter comes in the mail and they tell you, we're going to call you at this day and you better answer the phone.

And that's like one of the most important calls.

So you never miss it.

It's kind of like getting drafted from the NBA.

You don't want to miss the coaches call.

So you're just like waiting.

Um, and so I wait.

I answer the call at the time because it was the, the first time I was evaluated was right when I started.

So I had my retirement fund had nothing in it.

So there was no concerns for the social security office because according to them, I don't have any live assets.

And then when the next time I was evaluated, now has been a couple years, my employer pays into my retirement, I pay into my retirement.

So now it's at roughly like $20,000.

Mind you, $20,000 doesn't change your life.

So I answer all their questions and then I come in and I turn in like the, the report, the statement to my retirement fund.

And they're like, you no longer qualify for Medicaid through us.

Um, so we'll be like, you'll be denied.

And I'm like, well, wait, what?

Whoa.

Hold on.

What do you mean?

And they're like, well, you'll be denied.

And I'm like, I don't, I can't live without Medicaid.

I've never, I tell me the next steps, what should I do?

So I go in person to the Social Security Administration office.

They have no idea how to really answer my questions or where to direct me outside of telling me to cash out my retirement fund.

Now, I don't know if they know how retirement funds work, but like, I happen to be pretty young just for right now.

So I'm like, okay, no.

So we do have a resource here.

There's this man, his name is James trailer and James trailer is, um, a friend and I called him, right.

He's been doing this work.

He understands Medicaid like the weeds of it all, like he is a Medicaid scholar.

I would call him.

>> When you say here.

>> Where here in Rochester.

>> Got it.

>> And so I called him and I was losing it.

Right.

James.

I don't know what I'm supposed to do.

Like, help me.

>> That's incredibly stressful.

It sounds like.

>> Yes, because I have home health aide services that are paid through Medicaid.

And so I had no idea how I would keep my home.

It's really hard to find aides, so I really wasn't sure how I would keep them in the midst of losing Medicaid.

I had no idea how to even get my private insurance to pay for them.

I don't even know what the programs are through my private insurance, and I even called them.

And they, you know, they, I was waiting for information from them just to keep my life going.

>> How would it change your everyday life?

>> Well, I need help for a lot of things, right?

It takes me 20 minutes to put on a pair of socks and that's like on a good day, right?

Um, and so I need help.

I don't wash clothes because the washer and dryer is in the basement.

So I need help washing clothes.

I don't cook because I have this fear that the pots are going to spill on my lap.

So people make food for me.

I don't drive, so someone drives me.

So, uh, I need help getting dressed.

So like I need my aides to really take care of me so that I can keep going, right?

Somebody put me together today before I arrived to you.

And so I called him and he suggested that I apply for Medicaid for people who are working.

So that would mean that my Medicaid would now be facilitated through our state versus through the federal government.

>> Does that mean that that $2,000 limit was lifted?

Yes.

>> It would be lifted.

And so finally, like maybe three weeks ago, I think I told you on the phone, I got a letter saying I was approved.

>> Okay.

>> Yeah.

>> Hoop after hoop after hoop though.

>> Yeah.

>> You had mentioned in our conversation to going back to the pandemic of a situation with your wheelchair.

>> Yes.

So six months into my big girl job, the pandemic hits and we all get sent home.

And so my wheelchair, I started to note that the battery was not lasting.

Right?

And this is just from me going to my room to the office, like maybe a couple times a day.

Um, and it would die and it wasn't lasting long.

And I was like, oh my God, like, who do I call?

How do I do this?

I've never had private insurance and Medicaid.

And so I waited until my wheelchair, like could not make it anymore.

Like it was so bad that it was dying.

I told you died at Walmart, like, and my brothers had to push me back into the car because I was just putting it off because I didn't know how big the price tag would be.

And then I was also really afraid to spend money.

Um, because I didn't know a lot people were getting furloughed.

I didn't, I was the last person hired.

I wasn't sure like what that would mean for me.

Um, and my job is kind of unorthodox.

Like, so I wasn't sure.

Um, and my wheelchair being out of commission feels like when your boyfriend breaks up with you out of nowhere, like I'm sad, like I really get stressed out and I can't, you know, there's nothing that I can do about it.

There's no way to bring my, my spirits up because this is the one thing that gives me freedom.

Um, so it is something that I'm willing to pay.

Like when I get on a plane, I pray more for my wheelchair than I pray for myself, like to make it to the, you know, I'm praying that the chair makes it back to me at the gate and it still works and I still can use it.

Um, and I'm praying and I even tweet most often, like when Twitter was real.

Um, did pray for Clyde.

Clyde was my previous name because I need this chair to really work for me so that I can do all the things that I like to do and want to do.

Um, so I am willing to pay, but it just was not.

I'm not always prepared to just randomly spend five, $800 on something that like my health insurance technically should cover.

So I was lucky it did cover it, but I wasn't sure what that looked like because prior to that, I never had private insurance.

I only had Medicaid.

>> Mhm.

Does your, uh, wheelchair have a name?

>> Yeah, my wheelchairs name is bubbles, um, named after Agent Bubbles from Lilo and Stitch.

Because this wheelchair gets up tall.

Well, I mean, not really.

So it's like five feet five.

Five, maybe.

Um, but that's taller than I've ever sat.

So, like, I named it after Agent bubbles because he just felt really big to me.

Um, from the film.

>> And not the Powerpuff Girls.

>> Not the Powerpuff Girls, no.

>> Good.

Good clarification.

Thank you.

Um, so health insurance, you've navigated quite a bit.

What about things like urgent care, for instance?

>> So disabled folks fall off the medical cliff?

Um, right after they age out of pediatric care because there's nowhere for them to go.

A lot of times providers don't want to take Medicaid, but a lot of times providers just aren't accessible or don't have experience of working with disabled bodies.

So they have a hard time finding a place.

So for me, from 18 to 26, I was emergency room staffing.

So urgent care was like a nice friend because then you didn't have to wait.

The emergency room wait times because in theory, urgent care is supposed to be you're supposed to be in and out.

>> Emergency room surfing.

Yes.

What is that?

>> I was going to different emergency rooms to get my care right, and a lot of it was not preventative.

It was all reactionary.

So whatever was going on, it would be like the, you know, think about it.

You had a pimple that grew into a boil.

Like now the boil is about to burst and it's an infection.

Like that's when I was going to the emergency room.

Um, and it was surfing because I never went to the same one, right?

Like I never knew which emergency room like was the easiest to navigate.

Um, so for me, I would go to urgent care sometimes for certain things.

Um, and it was always a shocker.

So there was one time I went and there was one woman who looked at me in the face and she said, you don't look like you have cerebral palsy.

And I was like, well, that's funny because cerebral palsy doesn't have a look.

Um, there was another time that I sprained my sternum because I had a cold.

I had, well, it was close to pneumonia then.

Um, and the wheelchair that I'm in, it tilts back like a La-Z-Boy and it kind of stretches out a little bit.

And, um, the doctor who came in, he said, I'm so sad you have this, but at least it works or something like that.

>> And referring to your wheelchair.

>> Referring to my chair.

>> Clyde or.

>> Bubbles, it was Clyde.

And I was like, what?

What do you mean?

Like, if I didn't have Clyde, I couldn't be here like you.

So what's sad about it?

Like it's not, you know, wheelchair to me represents freedom.

Like I'm not bound to it.

I if, if anything, it gives me liberty, right?

Like I get to do and go wherever I want.

One of the first things I did when I got my first powerchair as a kid was I kind of ran around the whole neighborhood and I went to the library by myself, didn't tell anyone, and they thought my parents were like searching for me.

But that was like the first time I really had freedom to just be where I wanted to be.

Now, should I have done that?

No.

But I also have never had the experience to know that that's not what you do.

Because I was always wherever my parents were, because I was pushed, like, you know, but I think it's his lack of experience with disabled bodies is lack of experience at looking at, you know, a variety of durable medical equipment.

Like he just that's his ableism showing.

But it also, to me highlights how urgent care places aren't prepared for disabled bodies.

Like the rooms are small that you go in.

Um, but it also, if you don't have the experience, if the providers don't have the experience, they're not going to build the clinics that really are ready to handle folks.

In my opinion, again, these are my opinions.

>> And based on your experience.

Yes.

>> Like, and not just my experience, my friend's experience, you know, we all kind of shared war stories, if you will, of how complicated or just how off the wall.

Sometimes people say things.

Mhm.

>> So in terms of like the emergency room surfing that, as you had mentioned, is largely due to not having access to a primary care physician who was experienced and knowledgeable about disabled bodies.

>> Yes.

I mean, also just not having access to a primary care physician.

Like there's it's hard to find one regardless of, of ability now, right?

Regardless of body type, finding a doctor, a medical home is really difficult in our current time.

Um, and I don't know about then, but it felt like then it was just really hard to find a medical home.

I only really started to seek out a medical home like a PCP, because the place that would fix my chair, it still had my pediatric doctor's name.

And when someone caught it, they were like, we can't fix your chair until you get a new doctor on file.

And so then I was like, oh, okay, so I'll find a doctor.

So I would go to these really inaccessible clinics and I would go to like the first welcome visit and see how much my chair didn't fit in the waiting room or see if my chair didn't fit.

There was one time one of the rooms was so small, like the doctor couldn't close the door to see me.

Um, so at that time, I probably could have been dying in front of lots of folks and just would have never known.

>> Dying in front of lots of folks and never know.

>> I mean, I think if you're not getting, if you don't have access to a provider, you could anyone could be dying.

Like if you don't have access to a provider to do anything preventative, right?

Like how would I know if I was anemic?

How would I know if I had high blood pressure?

How would I know if I was diabetic?

How would I know anything?

And it would be impossible to know not to have, because the emergency room is not checking for any of that.

So it just is really complicated.

>> Can you speak to the experience in the room, whether or not the door can close?

Um, when you have folks talking to you like, I'm so sorry for your wheelchair and you know, you don't look like you have cerebral palsy when you are met with that and you are still needing to get care.

>> It's just, it's hard because you have to manage your emotional response, right?

Like, so it's kind of like when a man says something because we're two women, right?

Like it's like a man says something off putting and you're like, aha, yeah.

And you're like, laugh it off because you know, it's like the safest thing for you to do right in that moment.

Right.

But if you were in the safest place, you'd be like, yo, why would you say that to me?

Like, that was sexist, right?

Like, you don't always call it out.

And so that's kind of what it's like, right?

I don't always call it out because I still need you to be my doctor.

I still need you to prescribe the medication or the X-ray or whatever it is.

I still need you to do your part of this.

So I'll just kind of laugh it off.

The lady who told me my face didn't look like I just looked at her weird.

I'm like, what?

I said, well, actually, I'm here for.

And then, you know, I tried to redirect, but it's, it's an uncomfortable space.

So it creates all this like emotional baggage for the healthcare space.

Um, that I have to really try to deal with before I show up to the next provider.

Um, and that's where it gets, I think a little difficult because then you, you know, you get worried and nervous, especially when you're meeting new providers because you don't know what they're going to say to you.

And you don't want to have a big, huge emotional response that it doesn't, you know, you don't get what you need taken care of.

>> MM.

What about women's health?

>> It's like the bane of my existence.

I guess that's my other big bad.

That would probably be the Thanos of my life.

Um, because I think womanhood is such a complex place.

Um, I think that I'm discovering it as I age, right?

As I ascend into womanhood.

Or maybe I'm already there.

I don't, I don't know, because I don't know when you really get comfortable.

>> How do you define it for you?

>> I mean, for me, womanhood is like being a gal's gal.

It's, you know, a woman.

Even if I might not understand exactly what her plight might be, I'm willing to listen and I'm willing to share her message forward.

Right.

It's just being conscious of who I'm bringing in the room with me.

Um, that I'm not alone.

And so that, to me is what womanhood looks like.

And you know what it means to be a good woman, like to me, right?

Like everybody can define it in their own way.

So that's what it looks like to me.

But I can't say that that has always been the reception that I have received.

Um, and I just think it's because when people think of womanhood, they don't think of disabled women.

And I think that we can look at that in these big, huge movements.

You know, there were 70,000 women that went on the Women's March when 45, 47, whatever people call him now was elected, right?

Like, and all these women in their hats.

>> And Donald Trump.

Yes.

And yeah, first term.

>> His first term, right there was 70,000 women and there was all these influential women that got on stage and had all these things to say, right?

Like they had they made all these speeches, but maybe 1 or 2 of them really talked about disabled women.

And we were a footnote.

We weren't necessarily like the prime subject.

We were just like, oh, another thing mentioned, it's even in just like simple conversations of like how folks talk about the clothes that we wear, the things that we do, the interests.

Um, there's lots of times where my life experience just doesn't match.

So like, even in simple dinner conversations, I'm kind of lost in translation because my womanhood isn't like that.

Um, it's why it's also such a big thing that my best friends have babies.

My best friend just had a baby.

Even in her time of.

Have you ever seen somebody give birth?

No, it's very traumatic.

>> Okay.

>> For you to watch, right?

I'm pretty sure it's really traumatic for people to also do it right.

Shout out to them.

All the birth givers.

Um, but she was dead serious about them making space for me so that we could also as sisters, right?

We could share in this moment, you know, for her giving birth to her first child so that I could be a part of this and being able to have those conversations of like, well, look, they don't really make space for me in that kind of space.

They don't really expect me to be there.

Even the conversations we had with her providers, you know, I was I was telling them, I'm like, you know, at least she gets to take her baby home.

There's a lot of disabled women who have babies and don't get to take their babies home.

Right.

And their providers didn't know that.

Like they didn't know that that's something that happened.

Um, so it was even like kind of having those kind of conversations with those folks in the room for them to know that this is all super privileged because of how the system itself has created what they think women, you know, womanhood is, or even women who can give birth what that looks like, if that makes any sense.

I know I took you on a long journey.

>> I'm sorry.

Oh, I'm with you on this journey.

The system being the medical system.

Yes, yes.

Bringing this up because we we talked about this, I know this this can be a sensitive conversation, but when it comes to seeking out a gynecologist, for instance, for.

>> Yeah.

So it took me a long time to find again, I could have been dying in front of lots of folks.

I had never had a pap smear, never had a preventative care, um, to my reproductive organs, um, because I could never find a gynecologist who had experience with disabled bodies.

Um, and that's just to say that like I was with cerebral palsy, there's a lot of spasticity, so I can't just, you know, go to a free clinic, throw my legs up in stirrups and be like, do your best, right?

Like that's not what my life experience is.

Like.

There's a lot of spasticity.

I also just can't get on a random bed.

Like it just doesn't work that way.

And again, all of my life, most of the times that I've seeked like medical help is in a crisis mode.

Um, so I was having a medical crisis.

Um, I need, I was having, I had a period for six months and that is like the worst thing that could ever happen to life.

In my opinion.

Everything was uncomfortable.

I sit for 15 to 17 hours a day.

So sitting for that long while also bleeding actively was a lot.

And it wasn't just like the bleeding part.

It was like all these other things that were happening with my body.

And then I just happened to be in grad school, which emotionally is just a lot.

Um, at that time, it had when I originally went to the doctor, I had been bleeding for like a month and a half.

Right.

And so she had prescribed me some birth control and I took it, but there was no pause that I could not I couldn't stop taking it.

If I had stopped taking it, I would start bleeding heavier.

And so, uh, she was doing her best.

And then she, I came back and she prescribed a different one.

And then that one made me really sad.

And like, it just changed me as a person, right?

And I was like, like, the things that I did were different.

Everyone in my house, like this kind of took over.

Also my house.

It's so weird for like one person's period to like stress out a whole household.

But everyone in my house was like, what is going on?

And so I got in front of a gynecologist and they did a pap smear.

I had to be put under, and they did a pap smear.

Um, and then I was given an IUD, which really, you know, solved this bleeding problem.

But what they found during that pap smear is that my pathology was abnormal, which scientifically would make sense because I was taking artificial hormones through birth control for the before the IUD.

Um, but they were concerned about cancer because cancer, ovarian cancer and uterine cancer is common for folks with disabilities, for women, or for people who have uteruses.

Um, so they wanted to be sure that it wasn't that it was a 2% chance, right?

So it's a very low percentage.

So they then sent me to an oncologist that was also a gynecologist.

So I went in to see her because, you know, I do what doctors say.

I think all of us kind of try if it makes sense.

And, uh, she walked in the room and she looked at me and was like, what do you think about children?

And now, mind you, I just turned 30.

I had just had this huge traumatic thing going on.

I'm not thinking about kids at all.

And I also don't, you know, like, that's not what I came here for.

Like, I'm, I'm here solely to be sure that, like, cancer is not a thing for me, right?

Even if we're talking 2%, um, I just need to be sure that I'm good.

And so she's like, I'm gonna give you some time to think about it.

And so she walked out and it's me and my mom.

And we looked at each other and she's like, what's wrong with this lady?

That was just such an awkward exchange.

And then she came back in and she goes, I think you should have a hysterectomy.

And I was like, wait, hold on.

I didn't come here to make have any life, like make any life changing decisions.

And I'm like, uh, no.

Right.

One, you wouldn't say this to someone who wasn't disabled.

And so I went and, you know, I saw a different oncologist, gynecologist, and it was nothing.

No, but I, if I had had this lady, you know, take my uterus or my ovaries, whatever it is, like I would have had this huge surgery and it was for nothing because there was nothing there.

I was so expendable to her that her first response was, nah, we can just chop you up kind of and go on your way.

And even then, that's really when I started to look at womanhood, because she wasn't protective of me in that space.

You know, in my mind, we are all representation of each other, right?

So like, I'm not saying you need to show up and like be who I would be, but I'm just saying that we all kind of are a representation and we should take care of each other.

And she just wasn't willing to take care of me because I didn't fit in her idea of what womanhood looked like.

That's what I left thinking when I was with her.

Mhm.

>> How has your experience shaped how you go about your work as an advocate?

>> Um, I like to tell the stories that hurt because it's important so that people remember it when they leave me.

Um, because I want the way you do business to change.

I want you to be a better provider.

I want you to be a better teacher or social worker, whatever it is, in whatever space it is that we met.

Um, and I want you to hear the uncomfortable things because not everyone has the opportunity to have the platform that I have to say, the things that I say now, there is a price to pay for that.

Um, you know, authenticity is not free.

And so I have to pick and choose, like when, when I want to say the most hurtful things or when I say the most hard things.

Um, because I, it's also I live in a gig economy, right?

If I, if I always hurt your feelings every time you see me, then I'm not necessarily the person that you're going to invite back.

So it's like a, it's a very fine balance.

Um, that I kind of roll.

I would say, but my idea is that a conversation can change anything.

And so I really, let me let, like, let things like that lead me in that way.

>> Why is it important to hurt somebody's feelings in your work?

>> Because when your feelings hurt you, can you change the way you do business?

Think about it.

Like think about the last time in any relationship that you've ever had, right?

Like when did something complicated that you need to say to your friend, right?

There's a lot of times where I say things to my best friend that maybe she doesn't like, or things that she says to me that I don't like, but I'm not doing it on purpose to hurt your feelings.

I'm doing it so that, you know, the next time, you shouldn't do that.

Um, and that's how I take it.

I don't that doesn't necessarily mean that every time I can hurt your feelings, I take that opportunity because that's not my intent.

My intent is to tell you the stories that hurt so that you know that I'm a real person and that your decisions impact someone who is real, right?

Your decisions as a provider impact someone who like someone who is real.

Your decisions as a teacher impact someone who is real.

And they can shape like their trajectory, right?

That person who met my mom in the 90s when she moved here and was like, she should get Medicaid through the social Sikkema administration office, she changed, you know, my life essentially, because my trajectory was for me to struggle through to land where I landed.

But it had a different decision been made.

If my mom, you know, if they hadn't looked at my mom and had these low expectations of her, a lot of things could have been different for me.

>> It sounds like for you and correct me if I'm wrong, that your advocacy is very much like on person to person basis, rather than trying to tackle an entire system as a whole.

>> I think it's really hard to tackle a system as a whole.

I'm not a lobbyist.

I'm not a legislator.

Um, and so I don't have that kind of power.

But I also think that the worker bees are who make the world go round, right?

Like, as much as I would love to change a CEO's mind or like the leaders, if we don't start from the ground up, we can't make anything change, right?

Like if a worker bee stops working, the hive dies, right?

Like the queen could exist, but she's not.

She's just the queen.

Like where if she if her worker bees don't bring her the honey, is she valuable?

Like, what is she doing?

So we like the worker bees to me are the people who make the difference.

They're the people who made the difference for me.

Who opened the door?

Who?

My one on one para.

I can't tell you that the teachers were always determined, but she was determined that I was everywhere I needed to be in elementary school.

I mean, particularly in middle school, right?

I had a one pair of who was like, nah, they taking a trip.

You taking it to.

>> For a field trip.

>> For a field trip?

Because there was a lot of self-segregation in that era for me.

And she was like, no, if they take a trip, you take it too.

And if your mom needs help talking to people, I'll talk to them.

And so she changed it for me that she, she was a worker bee.

She wasn't in charge of the school.

She wasn't the principal.

She just worked for the district.

>> From all your experience, JD like, how does that translate to the kind of advice that you offer people when they're navigating similar things?

>> Um, well, something I like to tell providers, like future providers and future therapists is that, um, if my life, if this current moment was an episode, like an episode of Gray's Anatomy or an episode of The pit, I get the Oscar first, right?

Not my caregiver, not as a supporting actress or whatever.

None of those folks.

I get the Oscar first because this is about me.

If I wasn't here, we wouldn't be here.

So understand that you're the star of the show.

And so I would also kind of try to remind that to the providers, like, look, if I'm not here, you're not a doctor, right?

Like you need me to be the patient in order for this to be for you to be the doctor that you are.

And so I need you to, you know, show up in that way.

And to understand that that means that, you know, for caregivers, when the treatment plans are being shared with you have the providers talk specifically to the patient, not to you as the caregiver, because what's happening is happening to the patient, not the caregiver.

Um, so I would always say, remember that, that you get the Oscar first and then everyone else is, you know, that's when we can celebrate everybody else later.

But for right now, it really is about me.

Mhm.

>> That was JD Flores.

For more information on self-advocacy, visit our website at Move to Include.org.

You can support this podcast by >> Subscribing or following.

Wherever you listen, leave us a review and share us on social media.

We're at Move to Include.

This podcast was produced by WXXI Public Media.

>> And I'm Evan Dawson with Connections.

We're proud to host the Move to Include podcast.

As Noelle mentioned, you can get it wherever podcasts are sold.

And we actually don't sell them.

You can get them for free.

It's amazing.

It's incredible deal.

The work is really, really good.

And we're going to talk to Noelle along with our colleague Sarah Murphy Abbamonte.

On the other side of this break, about not only some of the themes you just heard there, but some news about how the federal government currently sees the question of making accessibility, um, even sort of broader and more wide ranging with technology and things like that.

So a lot to discuss and we'll come right back and do it.

I'm Evan Dawson Thursday on the next Connections.

New research is out all about how kids are spending their time in the real world, in the physical world and things like parks and in their yards and in their community and online.

The disparities and the effects on children.

We'll talk about it in our second hour, the Rochester cocktail revival is coming back, and we will get you all set.

Talk to you Thursday.

>> Support for your public radio station comes from our members and from the The Golisano Foundation supporting Move to Include programing on WXXI and working with the community to lead change toward the inclusion of people with intellectual and physical disabilities.

Share your thoughts at Move to Include.org.

And 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.org.

>> This is Connections.

I'm Evan Dawson Noelle e c Evans host and the move to include podcast and education reporter producer for WXXI News.

Congratulations on another outstanding episode.

Welcome back here.

Thank you.

Nice to have you in studio alongside Sarah Murphy Abbamonte who is project manager for Move to Include.

Nice to have you here as well.

>> Glad to be back, Evan.

>> Thank you.

And I should mention that JD, who was the interview guest on this podcast, is part of our Cab, the Community Advisory Board.

That is not why JD was interviewed, but it's always important to mention certain Connections and let the audience take that as you will.

So let me start with this Noelle.

I mean, you've interviewed a lot of people who are I mean, frankly, the stories they share.

I mean, just hearing JD talk about like, can you even raise this with your doctor because you don't want to lose your doctor?

Can you be vocal about what's wrong, knowing that being vocal might get you painted a certain way in a medical system where it's already really hard?

Some of these stories have just been really, really tough, but important to hear.

What stood out from this conversation with JD to you.

>> Ooh, that part in particular.

So these conversations, I'm pretty sure this was like almost two hours long.

And Veronica Volk, um, edited it down so that we can, you know, digest it.

An abridged version.

There's so much that JD shared and that part in particular for me stood out because I'm thinking of any time I've been in a situation where I feel threatened or a sense of like, possible harm, and I have to move through this space.

So as she's speaking, I'm feeling this viscerally of those times where I've been in a fight, flight, freeze, or fawn mode.

What she is describing is more fawn, where it's for folks that aren't familiar.

It's basically the simplest way I can put it is to basically be likable enough.

So that way they won't harm you, you.

>> Know, play nice.

Yeah.

>> Play nice.

Because, you know, it could be you don't basically finding a way to deescalate.

Um, before it even gets to that point.

And so when you have a power dynamic of doctor to patient and that's in the room with you, I mean, that's yeah, it's very, it's very tough.

Um, I can only imagine.

Um, and seeing how she talks through this, seeing, you know, her spirit as she moves through these experiences or, you know, her telling of these experiences, there's a lot of strength there.

And I think, as she mentioned too, for folks that are healthy and you don't really know, like, you know what your copay goes and things like that, um, there's a certain element to these experiences that folks are bringing forward through this podcast that is incredibly illuminating.

And, um, there's a, I don't want to say it's heartening, but there's, I do get the sense of, um, and I'm like, where am I going with this?

Which is essentially like.

>> I think.

>> There's a certain through these, this, like, I'm gonna find my words.

I swear it's the storytelling for me that I find really powerful here because some of this is not on anybody's radar who's able bodied necessarily.

I can't speak for everybody, but there are certain things that you just don't experience in your daily life that for other folks, it is daily life.

JD was talking about, you know, how long it takes to put on a pair of socks or needing to, um, like have having folks with when it comes to cooking, you know, helping take care of that because there are real consequences if in fact that stove top that pan falls on you while you're trying to cook, like there's, there's a lot to this.

One of the biggest themes I've noticed is, um, interdependence and this sense of collectivism actually being something that I think as a society, we're pretty starved of.

>> Yeah.

Well, so this is the fifth episode.

>> Yes, it.

>> Is of six.

Yes.

So one more to go here.

We'll see that in June sometime, I think.

AM I speaking out of school?

Are we gonna.

>> Say no.

You're in school early, early mid June.

I can't remember the exact date, but yeah.

>> Okay.

Um, so that's five episodes.

And of course, we'll link in our show notes, but hopefully you're already finding and frankly, hopefully you're sharing when you hear something from your public media that you love, please share it, share it with people, encourage them, um, to subscribe and to share it with people that they care about.

That's how these things can grow and they're important.

Um, my colleague Sarah Murphy Abbamonte shared with us a story from Disability Scoop that I want to talk about some of the themes from this piece, because I think it all relates to what we just heard with JD here.

So first of all, reading from Disability scoop quote, just as they were set to take effect, federal officials are delaying new requirements meant to make health care more accessible to people with disabilities, and they're signaling that additional changes are likely.

They go on to say the following the U.S.

Department of Health and Human Services published an interim final rule Monday, putting off the deadline for healthcare providers to ensure that their websites and mobile apps meet certain accessibility standards, end quote.

First of all, an interim final rule seems like a really good oxymoron.

Is it an interim rule or is it final?

I don't think it can be both.

>> It's squishy language.

It's pretty.

>> Pretty squishy here.

Here's what's very serious about this.

The echoes to me when you read the reasoning for this.

Sarah, go back all the way to the ACA, and I'm going to read just some of the reasons the agency cited comments that it has received, questioning the need for the new requirements, including one indicating that the rule imposes substantial financial burdens on health providers without providing any material benefits.

So, um, it's hard to argue to me that there wouldn't be material benefits for the disability community.

If you updated your mobile app, if you updated your, your websites, everything that you use digitally to communicate, thinking of people with various disabilities, how would that not be a material benefit?

So let's start there.

Is there any argument that it wouldn't be?

>> I mean, sure, you could make that argument.

I'm kind of flabbergasted by it.

You know, in the built environment, we talk about the curb cut effect when curb cuts, you know, started to go into our sidewalks.

They helped people not only with mobility devices, but, uh, people pushing strollers, people with shopping carts.

You know, it just became a benefit to everyone in ways that were probably unseen at the or unanticipated at the time.

And it's the same here as you say, you know, the digital and the web accessibility runs the gamut of folks who use screen readers or need to have plain language websites.

It's a, it's a whole gamut of, of diverse disabilities that we're talking about here.

And the statistics we always share is.

And now it's higher than 1 in 4, but basically 1 in 4 American adults has a disability.

That's a CDC statistic.

So this is not a small group of people we're talking about that are going to benefit from this.

So even if you're making the argument that it's not going to benefit, you can't make the argument that it's a minority of people.

It's huge.

>> Yeah, exactly.

And so you go back to the Ada, which was 93 or something like that, 1990, 91, 1990, 1990, Americans with Disabilities Act.

Of course, there were companies around the country saying like, well, you can't make me put a ramp.

Like that's a lot of money, or I don't have the space for it.

I would have to retrofit and that would be a lot of money, or I don't have the materials for that build.

And there are times where I see that and, you know, I'm sympathetic.

I'm not a small business owner.

I I'm not a health care provider, I get it.

But when when one of the arguments is, well, this imposes substantial financial burdens.

Like my first response is like, well, maybe like, maybe it does, maybe society should actually be accessible for everybody.

And I'm not trying to be glib, but like, that doesn't seem like a great argument to me.

Well, we, we can't be more accessible for people who are blind or visually impaired, because that would cost more money.

I mean, like, I don't think that's a great argument.

>> No, absolutely.

And one of the points that we always make, especially when we're consulting with other stations or industry partners, is when you design for inclusion and accessibility from the get go, whether it's a website or you're building or just a process within your organization, when you're building it in from the beginning, instead of retrofitting it and remediating it later, it's less hassle.

It's generally less cost.

And the average accommodation that, you know, there's the argument in workplaces like we can't accommodate workers with disabilities, but the average accommodation is either free or under $100.

You know, um, and there are already guidelines in place for digital accessibility.

We're just codifying these in a, in a more official way with these regulations.

>> Sure.

And, you know, in the Ada days of a lot of people were saying, well, you know, do I have to put a ramp at the entrance?

You do it once.

And number one, you understand how to design better because now you're designing for everyone.

And the next time you design, you include it and then you get better at it.

If you're designing a website or an app for someone who is blind or visually impaired, if you are trying to reach people with other disabilities, it might be a challenge at first.

Just as for us at Connections, we've talked about this very openly.

There have been times like the first time we had someone recently with cochlear implants.

That was a learning experience.

Guess what?

The next time it's going to be much easier.

>> Absolutely.

>> Because we've done it.

We've thought about it, we care about it, and we acknowledge that you're going to make mistakes, but you're going to learn from those mistakes.

Go ahead.

>> Yeah.

I mean, the term like when you say financial burden and it's financial burden on on whom.

And I think to folks who are disabled, where there is that financial burden on them, when you have.

>> The disability tax.

>> The disability tax.

Yeah.

Um, including if it comes to a work environment that's not accessible or not inclusive, um, where you can't get an accommodation that would make it just better.

Um, or even feasible to do the job.

And then, so then that there's a certain element of like financial independence that you miss out on because where, where is the onus?

And yeah, and who's prioritized?

>> I think that's, that's well said.

I'm gonna grab a phone call in a second.

I just want to close the loop on the federal story.

Um, apparently the deadline for large health care providers updating their apps, their websites, making them fully accessible was going to be this past Monday.

Mhm.

Two days ago.

And now it's May 11th, 2027.

>> Right.

And as you said, these are large health care, health, health care organizations.

>> Yeah.

>> Where the funds are there.

>> I mean, like they're pretty.

>> Yeah.

>> They're pretty big engines.

Yes.

Um, and for smaller providers, the deadline is now, uh, instead of May 10th, 2027.

It's now May 10th, 2028.

And that's assuming that there isn't further delay coming.

Right.

So there you go.

Let me grab a phone call from Stephen in Brighton.

Hey, Stephen, go ahead.

>> Hello?

Can you hear me?

Yeah.

Thanks for having me.

Sure.

So I am a physician who focuses on working with people with developmental disabilities, and I'm a colleague of JD Flores, who I admire enormously for everything she does.

I loved the podcast, the part of the podcast that you shared with us.

Noelle.

Thank you for that.

Um, I just wanted to make a couple of points.

First of all, the caring, providing health care for people with developmental disabilities is providing health care for people.

And if one can do health care well for people with disabilities, then you do it well for everybody because you're building in accommodations, you're building in the attitudes that you need.

And I just, I, I want to apologize to JD and to our entire disability community for the Pretti behavior that so many of my medical colleagues provide.

Uh, I want to just add one more thing, which is that in when people with disabilities are advocating for themselves in the health care world, and we live in a world of electronic medical records, it's really important for people to ask the health care provider to turn the screen around and show them this thing called the problem list, because that's going to tell the world, wherever you end up, the problem list is going to be the first thing everybody looks at when you come to the emergency department.

When you come into any new doctor's office, and that's the medical profile that people are going to see off of, make sure that the information in there is accurate.

Make sure the information that shouldn't be there is gone and, and that the information that's missing gets added.

Uh, and it can change very quickly how a health care visit goes.

So I'll stop and thank you.

>> Thank you so much.

Quick question on that.

>> Yeah.

Really good.

>> Yeah.

What is what is on the, the problem list generally.

>> Yeah.

And and we about 30s be tight Steve.

Go ahead.

>> Sorry.

>> Yeah.

Okay.

So it's every medical diagnosis you've got, but it also includes disability.

So for example, I have I wear hearing aids.

I asked them to add hearing impairment to my problem list so doctors would know they need to speak a little more loudly when they're talking to me.

>> Got it.

>> Thank you.

Yeah.

Straightforward answer.

Steve.

Great phone call and thank you for that.

That's what this is about, by the way.

You know, there's there's a health care provider who hears the podcast and says, unfortunately, it's very relatable.

But I don't think, Steve, you have to apologize on behalf of all your colleagues.

I think you're doing your part and hopefully the system, you know, step by step changes.

And sometimes it's just awareness of it.

Sarah has seen that in her work.

Sometimes people just need to to know.

Right.

>> Absolutely.

We're all on this journey.

There's no fixed destination for 100% inclusion and accessibility.

If only there were we could plan for that.

But it's constantly changing and all we can do is come at it with humility and intention.

>> Thank you for being here.

>> Thank you for having me.

>> Noelle great work on this.

Thank you.

10 seconds what's the next and last episode about in the series?

>> Talking about housing and everything that that involves including mental health and recovery.

And I could go on, but I won't.

>> Okay.

We'll see you for the.

Next one.

Yes.

Thank you.

That's Noelle.

Second move to include podcast second Monday of June.

I think they said from all of us at Connections, thanks for being with us.

We'll talk to you tomorrow on member supported public media.

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