Episode 38: A World of Feeling

3 months ago

Kimberly talks with Danielle Burton, Communications Accessibility Editor for the American Printing House for the Blind. They talk sports, public transportation woes, and haptics, which is a standardized system for providing and or receiving visual and environmental information as well as social feedback via touch signals on the body.

For more about haptics, visit: Helen Keller Haptics Video Series.

iCanConnect, also known as the National Deaf-Blind Equipment Distribution Program.

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to [email protected]

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

You can find the transcript in the show notes below when they become available.

Transcript:

Welcome to demand and disrupt the disability podcast here.

We will learn to advocate for ourselves and each other This podcast is supported with funds from the Advocato press based in Louisville, Kentucky Welcome to demand and disrupt a disability podcast.

I am your host Kimberly parsley and I'm Lisa McKinley.

Thank you for joining us Yes, thanks.

Everyone.

We are interviewing or I'm interviewing today Danielle Burton.

She is the Accessible communication accessibility editor for the American printing house for the blind and That's a mouthful but what it is is she's the person who they have a lot of people with people who are blind and deafblind and such in at American printing house and so she's the person who edits all the documentation and things they send out to make sure that it's accessible for screen readers and the like and I Want my own personal communications accessibility editor.

What about you?

So do I?

And I want I want every company to have an editor Like wouldn't that be cool?

Yes, that where they have to make sure that all the stuff they put out is accessible.

That would be yes That would be equally awesome.

So Danielle Burton is Wonderful, and she's amazing and you're really gonna enjoy my interview with her.

She told me something about a I Don't guess you call it a language but a form of communication called haptics.

And so basically what this is is where someone will will give you signals on the body to convey information about like the environment or social feedback or something like that like like if say your boss walk you're given in a presentation and your boss walks in and like that might be information that would be good for you to have but if you're blind you Can't see that right?

so a person like assisting you would be up there and would like Tap on your back in such a way as to let you know that hey, the boss just walked in Wow, that would come in really really handy, wouldn't it?

It would It really would and I I can't really figure out if it's I think there's an aspect to it That's formalized like I think there are certain things that mean certain colors or or things you know, I think there is a it's not formalized but standardized words that standard symbols and things and but some of it's not some of it's just cues or things that you would have worked out and of course it would she mentions like where they would like draw a thing or tap the signal or whatever on your back, you know, cuz that wouldn't interfere with what you're doing or I've seen this example of like I bet you've done this like where you're trying to get somewhere.

So you open your hand Flat and someone kind of draws like a map on your palm Yes, not not an ink but just you know, like with their finger, you know what I mean?

Yeah.

Yeah yeah, that would be so helpful in so many situations like, you know, like if I'm Talking about my kids and they walk in the room and I don't know it Your kids are in here.

Yeah, that's that's a perfect example exactly I'm sure it's used for much more important things but yeah, I could see how in everyday little circumstances and we were just talking about how quiet my husband is and Kind of when we're out in public, he's super quiet and he's super quiet.

Yeah.

Yep I can't even let me know when he's a real hill just kind of rub his finger on the back of my arm and I know that he's Rejoined me wherever we are.

So I mean, I guess that's maybe a form of haptic.

I don't know.

Yeah I think that that may be between you all that's kind of a non-standard form I know with me and Michael, you know if I'm walking sighted guide And I'm holding on to his uh, I'm holding on to his arm and let's say somebody says something Ridiculous, I guess he has this sign He'll kind of like he'll kind of like tap on my fingers where my hand where my arm My hand is on his arm and that tap means essentially What a load of crap, you know, it's like this secret eye roll It's like the ADA compliant eye roll you guys have Like because if I mean if people could see you know You look around and you'll give someone like yeah, like an eyebrow, you know, like you're giving someone a look like can you believe?

They said that or whatever, you know, so we can't do that So Michael just gives me a little tap on the fingers Which is you know, like that's one of my biggest regrets in life that I can't roll my eyes like oh my gosh I would be in trouble all the time haptics now we we have we have a whole new thing and I'm gonna I'm gonna put a link to the show notes, uh, it's the Helen can Helen Keller Center the National Center does a Training on stuff and they have some training videos And so I'm gonna drop the link to that in the show notes about haptics also this week the Olymp the Paralympics just wrapped up and I was wondering did you do you watch the Olympics or Paralympics or any?

Such sporting stuff.

I did when I was younger.

I used to love to watch Ice skating.

I don't know if they have Paralympic ice skating, but I don't even know How popular Paralympics was 30 years ago, but no I should watch it more but I know there was a picture circulating of a blind Olympian that won a medal for Track and field or some some sort of foot race and his guide was on the podium With him and I think it was really cool because it was captioned about how you know We all get where we are because of others because as his guide had to train Just as hard as he did and I thought that was really cool.

Um, we all of us disabled or not, we're all here because of You know the help of someone else so yeah, all of us.

Yeah, exactly.

That is cool.

Yeah, that's cool.

I Paralympics you hear a lot more about it now than you used to I mean used to I never I mean, I knew Olympics and I knew Special Olympics, but not Paralympics until you know, I was an adult I guess I assumed they had them long before then but I Was not exactly an athletic type person.

So what about you?

Did you ever do any sports or compete in any sports?

I did I competed in judo when I was in high school and then my first year in college and When I was in high school, I really enjoyed it.

It was kind of like fun just and we went to different competitions and then actually my freshman year of college I started training here in Bowling Green and They wanted me to train to go to the Paralympics But you know, that's just wasn't where my mind was at the time I was doing it for the socialization and the exercise and the camaraderie, but I didn't really have any interest in that and I think Kind of was annoying to them on their part, but you know, we all have our thing Yeah, I mean So I am impressed first of all also Tim explain what judo is.

Oh, okay, of course judo well I'm sure most people know what wrestling is judo starts in a standing stance so you have your two opponents and They come together.

I think you come together about two or three feet apart from each other no contact and then once the The whistle is blown or the referee Gives the signal.

There's some kind of Japanese word for the referee.

I don't really remember what that is right now, but then you will grab your opponent's lapel and they grab yours of Your gi which the gi is the little robe outfit that you wear with a little belt But you grab each other's lapel and then you kind of try to knock each other off balance and who hits the floor first the you know the person who put the other person into the floor, you know gets points and then you basically go into wrestling where there's you can pin your opponent or choke out your opponent and all different things that will get you points and Once your opponent taps out Then the match is over So do you still keep up your practice at all?

I don't but I'll tell you a funny story.

It has been very valuable because one thing you do in judo is one thing in practice is people throw you to the floor over and over repetitively as Part of the drills and you learn to fall in a way that you won't be injured and in college this was like a few years after I stopped practicing someone came over to the to the dorm and spent the night with me and I gave them the bottom bunk and I slept on the top bunk and I Was in the habit of keeping my talking alarm clock on the floor and to make myself get up I would just roll out of the bed onto the floor and then turn off the alarm clock Well, I did the same thing but from the top bunk Which was like, I don't know five feet or more and I just rolled onto the concrete floor But I instinctively fell into the judo fall position.

So I didn't hurt myself That was really cool.

You learn to protect yourself.

It's a it's a good sport for the visually impaired Hey learning how to fall.

Well, that's a life skill right there.

Yeah Metaphorically and literally learn how to fall Well, you learn how to break people's arms and choke people too.

So that's always fun What does Patrick say about this is he?

He knows I use my powers only for good.

Oh listen to that listen to that.

I love it.

That's awesome Better you have the bluff on him.

Yeah, that's probably it The Paralympians, I mean just all the training so much work Hey, they put so much work and effort into and they don't get as many of the big sponsorships and things like the Olympians get then you and I Attended an event together this past Friday.

We don't do much things together Should more we should we went to the Kentucky Department for Protection and Advocacy Who have we who we have had on the show Beth Metzger from there?

they did a training here in Bowling Green for disabled people about voting and we went and another person from the South Central, Kentucky Council of the Blind went and it was interesting and fascinating and You know, I think it's so important that well number one that they did that that they they're out there and that they're like Hey, you know, we want you to vote.

So we're gonna Answer your questions and you know, you may not know this you made the news who made the news you did me me I'm at least your face Yeah, the local television station was there.

No, I didn't know that Yeah, you and another One of our members you can see them in the background you and him in the background of the video sitting and having a conversation Really?

Yeah, so Okay, you know our voices, you know, we made our voice heard we we Represented and I think it was great that they came out and you know tried to give a little more education on accessible voting You know, there's progress to be made but there we're taking step forward and I think that's great Yes, and it's it's important that they were there doing the training and it's important that you know people showed up, you know And there were several people there that we showed up and said hey, we're interested we do not want to be we do not want to be ignored or have our Opinions or our needs shunted aside We want to have a voice and be heard and we showed up and did that and I think it's great I remember something David all good who works for the Center for accessible living He does advocacy stuff in our Louisville office told me was that When you you know when you're writing to your elected officials, they can look up They can't see how you voted but they can look up and see whether you voted in the last like I don't know Election to elections, whatever they can see whether or not you voted not how I'm not how you voted or who you voted for but that you voted so It's important that we vote because it it carries more weight when we want change when we go to our elected officials and say hey You know, I Have a problem with this.

I would like for you to work on my behalf for her this and One of our members from our local group said his daughter votes and you know, so a lot of times when the elected officials local officials are canvassing the neighborhood looking for votes, they'll knock on the door ask for her and she's not there, you know, he'll say he'll they'll say oh, well, are you a voter and he'll say no and Because he isn't usually and because of the trouble it is for people who are disabled to vote and he said the person always says All right.

Well, take care.

I'll see you Wow.

No No trying to figure out why he's a disillusioned No voter or you know, no kind of no if you don't vote If you don't vote, they're not interested.

But if you vote then they listen, I guess so Interesting, isn't it?

Yeah Just the way democracy works, right?

Democracy.

Yes, but it's it's an imperfect system It is our system, but I tell my children every day when they start complaining about things that you know, we may have our problems, but We really are blessed to live in a country in a democracy where our voices can be heard because so many Countries don't have that that is true.

That is true What we tell our kids when they complain about things dealing with this house is I don't know who told you this house is a democracy Because it's not And I own you I Don't really say that but I I have referred to myself perhaps as the supreme leader a time or two.

So You know they I'm not sure they find it amusing but effective and that's the point.

But no democracy very important that we We we vote we show up we'd be informed.

It's work.

Don't get me wrong It's work, but that's that's sort of the the social contract, right?

is this that's we put in the work and and We get the right to vote We do absolutely and if you are out there and you've had any problems with accessibility When trying to cast your vote, let us know shoot us an email.

We'd love to hear your story we would and closer to election day we will be probably talking about there's a Hotline in Kentucky Department for Protection and Advocacy has if you're encountering any problems at the polls Of course people from anywhere in the country can listen to this podcast.

So you might want to Here in Kentucky, that's the Kentucky Department for Protection and Advocacy.

It might be called something different in your state so you might have that the name of that organization and that number ready just in case you encounter problems on polling day, so important stuff and Now I think we will pivot to My interview are you excited to hear all about haptics?

I am very excited I think I'm going to learn a lot and Danielle Burton knows way more about it than I do.

And so here is my interview with Danielle Burton Thank you so much for joining us today Danielle, how are you?

I'm doing well and and you are Do you kind of define yourself as deaf-blind?

Is that correct?

Yes, I identify as deaf-blind It's a lot easier.

I have no vision I used to say have more the moderate hearing but I'm pretty sure that's gotten worse So I I probably say I have more of a moderate hearing loss nowadays.

I don't know It is what it is.

I haven't had a hearing test since 2020 and I kind of eh, whatever And you use you use hearing aids in both ears, is that correct?

Yes Yes, I use hearing aids in both ears right now I'm using headphones because sometimes the hearing aids like to give this echo thing going on and sometimes it Causes the recording to sound really echoey.

It's really weird.

I don't know.

I think it's the mic I think it's because it doesn't use the because it improvises to the hearing aids but then it uses the phone microphone and I think because of that distance it does sometimes there's like a feedback and the other end now tell me I was Watching some interviews that you had done and you decided you made the decision to learn tactile sign language Yeah So yeah, tell me how you came to make that decision.

Well No, I mean I grew up in it or you know, I grew up as The only deaf-blind person in public school and I was always around Individuals I was involved my teacher the blind was involved in the National Federation of the blind So I grew up around the NFB philosophy of you know Having good blindness skills and I did attend a blindness training center when I was in high school Really glad I did it did that first and I did have more hearing back then but at the same time I knew that it wasn't great.

And so when I went to Morehead State University, I was majoring in elementary and special education and I found it really challenging to know what was happening in the Classroom because I couldn't hear what was going on I could hear the teacher and I could kind of you know Like I knew it knew what the class was kind of doing but as far as like being able to serve students and sign conversations and things like that it just wasn't happening and I you know had just recently met more deaf-blind adults and they were talking to me about using interpreters and using support service providers and things like that and I thought You know at that point I really wasn't sure how I was going to student teach and I was like I don't Have the skills to know what I need to accommodate my hearing because that was never addressed going through school blindness to to the education world blindness was the more severe disability and Because I could speak and I made good grades.

I didn't I didn't have a teacher of the deaf So then I decided to go to the Helen Keller National Center to run ASL and while I was there like I learned some bases but I didn't really learn like enough to Be able to communicate.

Well, so I was there my former TV I again Was her she's probably the best best thing that probably could have happened, but she said, you know, why don't you?

You know look at the Deaf Studies program UK or Eastman Kentucky University and I said sure right now sorry I did and I called them and I talked to one of the first people I talked to was Kimberly Hale who was one of the advisors for the ASL department and she said and I was like, you know, I'm totally blind like I I want to take ASL 101 I had to enroll and you know, I would be tactile and like I explained that I had a progressive hearing loss and she said Yeah, that's no problem.

You know, you're just using interpreting class.

She literally Made it sound like it was no big deal.

And you know a lot of universities are telling blank people They can't take ASL classes because they have to see So really?

Yeah, I hear that a lot Really?

Huh that so I Know you said well, first of all, would you like to say your teacher's name so that she gets all the praise that she deserves?

Yeah.

Yeah Laura County Stevens She wasn't exactly my full TBI and she was actually my tech teacher on Saturdays and then now she's kind of basically family at this point I Those people are so important.

Aren't they?

Yeah And talk to her about every week, you know, so Awesome.

That's awesome.

So you said that in the in according to the public school Being blind is the the bigger disability.

So do you feel like you had needs that weren't addressed in the public schools because your deafness was not Really considered it sounds like I'm a lot of incidental learning like, you know, I wasn't able to know Really what was happening, you know You a lot of people like, you know kids have conversations You know side conversations in class and you know when the teacher turns around things like that and like not being able to hear the students in the back of the room so just not really being able to like You know, you know go up to like a group of people and interact because I couldn't hear them so there was a lot of that social isolation that occurred because of Yeah, and I think I think sometimes people I mean we all Whether you're disabled or not, but especially blind people, you know, you you all have those we all have those instances where things you know, we're just not we're just left out of something or You know, but in a classroom setting you're looking at the beginning of the class knowing every day You're going to have to come and deal with that isolation.

That is tough.

I Read books.

So, okay, you know, I think I come bro.

I read birds and like I you know The people directly in front of behind me beside me I spoke to but that was about I did do swimming high school Competitively.

Yeah.

Oh Awesome.

Awesome.

That's that's wonderful.

Do you follow the Olympics?

Did you follow the Olympics this summer with the swimming and I did not I did not Okay, okay Me either don't don't feel bad me either I feel like I should be following the Paralympics I'm not doing that either.

I really So how did learning?

Tectile ASL help you to be more involved in classrooms and social settings I think the biggest thing is it's allowed me to have options and communication like especially in difficult situations like now For like my team meetings at work.

I don't use an interpreter I just pass my microphone around because we're in a smaller room and like I know everybody's voices, but for what the larger Department meetings and we tend to have it in this big open room.

That's I can read and stuff Yeah, so at those point and it's a larger number of people and so I used to have interpreters so that like I still can use my hearing I think for me it's allowed me to like This is gonna sound really weird and this is not how the you Technic was supposed to do this, but this is how I do it Is I I can kind of fill in the gaps like if I miss what I heard I can watch the person signing versus or if I Miss something that was signed I can so I kind of what flop it so it kind of helps that total communication and filling gaps Oh, I don't think that's not like yeah, I don't think that's cheating I think it's like, you know people who could see and hear they're getting visual information and audio information So, you know, it's yeah, you're you're you're getting audio and tactile information So that I think that's great.

Then are there any other things other things that you do?

I know someone was talking I saw in an interview about using haptics Yeah haptics, which is also known as touch the nose.

So sometimes I will use that like if I Presented to a group of audience in person.

I like to have someone, you know provide that information on my back But other people are nodding and people are laughing or you know, people are getting sleepy, you know Is that a is that an informal form of communication or is that formalized in some ways?

So it is In some way, yes but also There's a lot of wiggle room Like there, you know, there are some formal touch cues that was developed by people in Norway Really?

Yeah.

Yeah, so There is a book Haptic communication something Helen Carroll National Center, which is it?

I think it's on iBooks But there are four and I don't know I did at one point learn like colors and drinks and stuff like that But for me personally, I use some of the stuff for like presentations and then I use Sometimes I'll use stuff for like mapping if I go to a new environment I like like someone to draw it on my back or on my hand and they kind of map it out Uh-huh.

Yeah.

Yeah, I've also used it for other random things like Rock climbing like okay describe the wall to me before I climb it.

So that or I'm sorry Did you say did you say rock climbing?

Yeah.

Yeah, I did.

Okay.

Well, we're gonna talk about that next then so go ahead Go on then with the with your what you're tight.

What are you saying?

Like if I you know, like they gave it to to a fair once and I Am on a journey starts with this boys and he's like, okay so then he's like behind me on my back trying to show me where the balloons are and I'm like aiming the Doors at the boys and hitting the boys.

So, you know it works It does it sounds yeah, it I that's something I need to look into more.

That's that is awesome I think that would be beneficial for a lot of people, you know I think it would be even for human blind people but they you know, a lot of people don't think about how that could you know Be beneficial to someone who's just human and blind but I yeah Yeah, I think it would be yeah.

Yeah, it absolutely would be so now the rock climbing.

Let's go back to that So apparently you do a lot of outdoorsy and adaptive type stuff, right?

I do.

Okay.

I try my hand at a little bit of everything I was a spokesperson rock climbing when I was a student at blind Incorporated one of the NFB training centers and I was in high school they took all of us indoor rock climbing and at that point it was on auto boys and I Was bound in the tournament because one of the counselors well, he was actually okay travel instructor he was like climbing this wall and we were like Okay, we're gonna get to the top of our walls somehow.

So I you know, that was my first experience of Chop rope climbing is what it's called You know cuz you're in a harness and you had the rope.

I don't do bouldering I actually have a brittle bone condition.

So I don't because there's no harness and there's no rope and I Don't really want to fall and break something so that I don't touch but I do Do indoor rock climbing I prefer being belayed and then I put fur to hand in my FM my microphone and then they can Depending on the wall.

Sometimes I don't need it.

Sometimes if it's a really challenging law It's helpful for them to give me direction about where a good hold might be That's just out of my reach because I am short.

I am four six Yeah, short people and climbing sometimes has problems so anyway So is that something you get to do often I haven't been in a while.

I've just I've been super busy with various ways of stuff because I I'm in the midst of wedding planning and Congratulations.

Oh wow.

I've lost my mind So trying to do all of that and just And and doing some work on the side for the deafblind equipment distribution program that I can connect program I I recently Contracted with them to provide an instruction to deafblind individuals in the assistive technology that they get from the program Is that Kentucky only or is that so the program itself is Across all 50 states, but I am kind of the only trader that's actually based in Kentucky as far the Helen Keller National Center is running the program out and The person that's in charge of Kentucky has to fly in and things like that So like we don't have any can trainers based in Kentucky until I signed that contract.

So Okay, so and there's there's my Saturdays for you So tell me um, what's the name of that program again?

It's called I can connect Uh-huh.

Okay, and it is Tell me about it again.

Um, it is the it's Mandated by the FCC and it's to provide free talent distance telecommunication Equipment to individuals who are deafblind who meet the vision and hearing eligibility and the income guidelines Okay, okay, and so what and training and the training of that and using that technology And so what kind of equipment is this it can be like an iPhone?

It could be a laptop it could you know anything like email outside food?

It has to be distance communication like you know Like a CCTV isn't typically on the list because that's not distance communication like over the internet right so but refreshable braille displays Keyboards any of those like accessories that will help with that.

I think there's some Trying to think what else there is it's like some alarm type stuff, I believe cellphones mobile phones amplified phones Caption phones things like that.

Oh, uh-huh.

Uh-huh.

And you do that Yeah, when you're not wedding planning and stuff, right when I'm not running part in them working my 40-hour work So have you become a bridezilla already?

I'm sure my mother would probably say yes.

I Bet you're not I bet you're not And my fiance is just kind of like whatever Yeah, I asked him what he wants to do.

He goes.

I don't know.

I'm like, all right, I'm doing it and then Do that's what you want.

That's what you want someone who goes along with all your plans.

That's what you're looking for Yeah, that's what you're looking for.

I like that a lot and I know you'd move to Louisville and one of the things you are kind of I guess Sort of by happenstance got involved in doing some advocacy in relation to TARC the trend Transportation there in Louisville.

Can you tell me a little about that?

Yeah, so I I'm before I moved the level, you know I've been to the Kentucky School for the Blind and things like that here.

So I've been on the TARC.

TARC is our Public bus system and for those that don't know I think it's like Transit Authority of River City something like that So it's a public bus system and before COVID, you know, the buses were great They ran probably 15 30 minutes something like that Now after COVID they're on a weekend plus schedule.

So they run about every hour to 75 minutes, which is already a pain So I since I moved here and the buses are that way it's kind of like a ticket much but then we found out that Because of lack of funding and like a budget that they're looking for 2025 either cutting routes or Either they're gonna cut routes and do like a ridership They were like just more frequently in like high population like high Population areas available or They're going to do keep all the routes in like it's gonna be less frequent bus stops Which is probably gonna be less frequent than it already is So either way you look at it.

It's not gonna be good But at the same time, you know, if they're gonna cut routes, you know, that's part of the city that's gonna be completely cut off from people with disabilities or just not even that but people who rely on public transportation and it's also gonna the paratransit system because Paratransit, you know, the mandate is three fourths of a mile from the fixed route So if there's no route going to that part of the world, guess what?

There's no paratransit going there either that You know Transportation is just always gonna be an uphill battle It's very frustrating and thank you for doing the advocacy and what you're doing also thank you for telling me what TARC stood for because no one has ever told me that before and Transit authority I could pretty much figure out but the the River City thing I never got so thank you You have educated me well today Yeah, I didn't know what it was Looked it up.

So don't worry So so this will impact you Directly, right?

I mean your lifestyle.

Yeah.

Yeah You know when I get married that's true, you know me and I you know My fiance moves up here after we get married, you know, we were talking about you know Moving to a bigger apartment, you know things like that.

But now I don't know what to do because You know, are we gonna be able to find anywhere else to go?

This on a bus line even the not just a bus but the paratransit would go there too So I don't I don't know I which you know, we can make it work in my two Bedroom apartment now if we need to but at the same time I really really would have liked to have been able You know move about in its brain and have a washer and dryer in my apartment, but we'll see how that goes Mm-hmm.

Mm-hmm so aside from accessible public Public transportation what other supports need to be in place for you to be successful?

You know being able to walk places, you know sidewalks good you know, I don't like crazy Like crossing interstates to get the places.

I like to be able to walk in high pedestrian areas Especially being deafblind and not always being able to when I get to the curb.

I don't know Depending on my hearing that day that time or whatever I don't always feel comfortable making traffic judgment So like being in a high population area where I can be like, hey, I need some assistance you know, if I wait a few minutes some of the probably be by because people are walking and So that's really important to me so that I can go and wander around the city Yeah, I like going finding places to eat and coffee shops and ice cream shops and things like that a little too much Those are the things that make city life worth all the hassle isn't being able to go out and do stuff Yeah So that's important to me and you know being around I have a lot of friends that live in this particular area that I'm at So like I don't really want to move but at the same time, you know There are some conveniences I would like like I said, I my washer and dryer is in another building right now Which means I have to drag my stuff over there Which is you know, I've done it for two years, but I really would like to have my own washer and dryer in my apartment Yeah, yeah Definitely.

I know when I was shopping for house just having washers and dryer that was in a basement of a house was a reason For me not to buy that house.

So yeah.

Yeah It being in another building.

I can't even I can't even imagine so Maria Kimplin who now works for Center for Accessible Living who gives funding for this podcast she's the one who introduced me to you and she describes you as adventurous and fearless and I think that is true and So I'm wondering where does that where does that fearlessness and that can-do attitude come from?

I Would probably say my parents I I grew up on a farm in the middle of nowhere, Eastern Kentucky, so I even think of it like, you know in some ways and never got every shelter because you know real area but in a way I wasn't because you know, I was expected to Do things like, you know, it's expected to be successful in school.

I Got out and you know My mom would take me out to the garden with her the way, you know When I was real little I wouldn't touch the grass.

She knew she could set me on the blanket.

I wouldn't go anywhere but yeah, but anyway, you know, but they kind of persisted and Insisted to the point where I was like four or five by the time it's four or five I was running around the yard barefoot, you know says a kid who wouldn't touch the grass.

So But you know, I was expected to help You know I find it interesting when I would go to like camps for blind kids and stuff and they would take The kids to a farm like these kids have never seen sheep or horses or anything cows and they're like Oh, you want to touch it and I'm going in Uh-huh So I grew up with all of that stuff, you know, my papa had horses and so I you know been on a horse I You know, he brought me a Cap, you know, it was about I don't know nine or ten or something I thought so I grew up with you know, those kinds of hands-on Experiences, you know, my cousin would come down from Indiana and my dad would take us hiking over at Carter Caves and you know you know, I I did not grow up on a farm, but I grew up in a very rural area and Nothing makes you learn how to figure it out.

Like being raised in the middle of nowhere.

Does it?

I mean, yeah Try getting lost in your yard because sometimes I would get up in the middle of nowhere And even now like I go to my parents and I'm like wandering around it go take my dog out and I'm just like I really miss my little country grass outside my apartment world.

Like I can't get lost because the The black top is right there and then the building's right there and then I come go back and I'm like, um, all right, dog I hope you know how to find your way back to the stairs to the door because I don't Yeah, no, exactly.

Exactly.

You learn how to just figure it out.

Don't you?

Yeah, and that's one of the great things about Kentucky I mean is that we have we have urban areas, but also there's just a lot of a lot of Rural areas with farmland and just wonderful people, you know, I love Kentucky.

Everyone.

Everyone knows i'm I love the state that I come from.

So I love Kentucky, but Kentucky's transportation At the state is terrible That there there's definitely room for improvement.

There's definitely room for improvement.

I'm so glad that you Yeah, I I miss living when I was in when I was in, uh Minnesota blind ink I actually went back and worked there and it was so nice being just hop on a bus and go To random places and then even when I was at Helen Keller national center I could get the get a taxi into put Washington and then hop on a train into manhattan like You know, it was nice Oh, wow that that that stuff when you had it and then you don't have any more isn't it?

Yeah.

Yeah Danielle, what do you wish people knew about deafblindness?

I think the biggest thing is you know, people think that people who are deafblind are totally deaf and totally blind and that Is absolutely not true, right?

There's such a variety in Diversity within the deafblind community, you know some Identify with deaf culture some of them do not some You know primary use speech even you know, don't use braille some do it's very Very very diverse and the abilities are very diverse and people have various combinations of vision and hearing loss you know some some people have low vision and Some hearing and some had no No vision and some hearing and some have You know some low vision and no here.

It's sort of such a variety and there's a variety in communication So if you meet someone who's deafblind, you know Identify yourself, you know you speak if you know asl, you know sign but you might want to like You know touch the person on the shoulders so that they know that you're talking to them So just kind of kind of go by how they respond Um to you if they turn and speak or they put their hand up for tata, you know, just I I guarantee they'll show you how to communicate and if you don't know like asl like generally they'll find some way to communicate whether it's you know pulling out their phone or Something just be open to And just take that let them take the lead that they'll let you know Mm-hmm.

Mm-hmm.

That's that's that's a great a great way to end.

It's all people are different, but all people are people, right?

Yeah Excellent.

So danielle barton.

It has been wonderful talking with you and uh, thanks for hanging out with me today No problem If you like the podcast remember to follow or subscribe so you never miss an episode If you really like the podcast we'd love it if you could leave us a rating or review on apple Podcasts or spotify or wherever you get your podcasts that helps more people to find us If you really really like the podcast then please tell someone about it either in person or send them an email or just Share the link on social media.

Thank you all every bit helps and it makes a huge difference for us If you'd like a transcript, please send us an email to demand and disrupt at gmail.com And put transcript in the subject line thanks to chris unken for our theme music demand and disrupt Is a publication of the avocado press with generous support from the center for accessible living located in louisville, kentucky And you can find links to buy the book a celebration of family stories of parents with disabilities in our show notes Thanks, everyone You say you've seen a change in me Just for once I think I would agree We both know there's a difference we've had our curtain call This time the writing's on the wall Yeah This war of words we can't defend Two damaged hearts refuse to mend Change This situation's pointless with each and every day It's not a game we need to play Change we try to make things better Prepare and rearrange things But each and every letter Spells out this need for us to Open up our minds and hearts to change Change Change Slowly but dice, then what will be will be Disregard for good to set us free Free There's just no way of knowing if love lives anymore Turn out the light then close the door We try to make things better Prepare and rearrange things But each and every letter Spells out this need for us to Open up our minds and hearts to change Change Change you you

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Kimberly Parsley