>>DOUG: Welcome to episode 4 of feeling through Live. We are joined by Maricar Marquez and Don Horvath both employees at the Helen Keller National Center and a married couple. We will talk about how their work there at HKNC and also about their personal lives. They're generous to be sharing with us about their life as a couple as well. Without further adieu, Maricar, I would love if you could tell everyone about your position at Helen Keller National Center.
>>MARICAR MARQUEZ: Hi, everybody. I am the supervisor of the independent living department at Helen Keller National Center. I have worked at Helen Keller for over 22 years. This summer was my fifth anniversary as supervisor of this particular department. And my job involves running the independent living department. I have four instructors that are in independent living with me, and we do assessments for the DeafBlind students that come to the center so we assess their life skills, things like cooking and cleaning and we provide instruction on those things. We teach our students how to live as independently and as safely as possible. We also have two apartment programs in Helen Keller National Center. We have one that's located in our dorms which are on campus in Port Washington in Long Island and ones located off campus and those apartment programs are a collaboration of all of the departments at Helen Keller National Center but they're led by the Independent Living Center but they incorporate mobility skills, communication skills, technology, vocational skills and the ultimate goal for students is to be able to navigate their homes safely as well as their work environments. So whatever their work environment entails we support as well.
>>DOUG: And Don if you could give us an overview of your position at HKNC.
>>DON HORVATH: So I work in the adaptive technology department, and there we teach different skills to a variety of students. Some students are total DeafBlind, some students are hard of hearing so it all depends on the modality. We teach braille displays, low vision programs like Zoom Text and speech output programs like Jaws and we teach people how to access websites, email, text messages just to get them connected with the world again, and I have to say that you know, I work with a wonderful team who taught me everything I know. I joined the tech department about three, three and a half years ago and it's just been a wonderful experience because I have been able to watch the students really like master their technology whether it be using, can I show them some of the technology, a Focus 14 braille display with an iPhone. Right now Maricar has her iPhone tethered to her Focus 14 and she gets males and text messages that way. So I teach people how to access information and I've taught people how to use their iPads and the QWERTY keyboard with the speech output program to access emails. So depending on the consumer we have different goals that we want to achieve. But within the same medium. So prior to that, I had been working at Helen Keller for 20 years. So prior to that I was a case manager in the community services program and prior to that I was working in the communications learning center. And prior to that I worked in the vocal services program and prior to that I worked in the dorm where I first met Maricar. So we go back.
>>DOUG: I definitely want to get to that in a little bit. And I want to get to in just a moment I want to talk about how your jobs have changed in this time of COVID but before we talk about that I would love to just talk about communication for a moment. So maybe you know, obviously for people who are tuning in right now who might not be familiar with different communication modalities in the DeafBlind community, we can see that Don when you are speaking you are both speaking and signing to Maricar at the same time. Can you talk about what that mode of communication is for people who maybe have never seen it before.
>>MARICAR MARQUEZ: So I have Usher's Syndrome, I was born deaf but I grew up with vision. I learned visual sign language but part of ushered syndrome is retinitis pigmentosa, so I have progressive vision loss. So at first I had a hard time seeing in the dark and it got worse from there. I grew up just as a deaf person using visual sign language like most other deaf people and as I got older and my vision got worse I depended more and more on touch and transitioned into tactile sign language so I am feeling what he's signing as opposed to looking at what he's signing.
>>DOUG: Thank you for explaining tactile sign language and Don if you could speak on, in this case in an ideal situation we would have another interpreter on your end so that someone would be interpreting for Maricar but not having people coming freely in and out of places can you explain Don what you are doing in having to speak and sign at the same time? Can you describe what that is.
>>DON HORVATH: Being that I'm talking and signing at the same time we call it simcom because it's simultaneous communication. It's not easy because sometimes I lose what I'm thinking and saying in the sign. So hopefully Maricar she's getting it. Most of the times she knows what I'm going to talk about because we've talked about it before or if we're with family and friends, if I am simcomming with her family, this happens a lot in the community because a lot of times I don't have an interpreter to pull out of my pocket and go here you go so a lot of times it involves like a little chat after the dinner or after we meet with friends we'll just chat ourselves, and talk about what happened. So this is not ideal but it's workable in this situation because of the situation we're in.
>>DOUG: Absolutely. And again correct me if I'm wrong but to my understanding, sign language has a different sentence structure and syntax than you would use if you were using simcom so is that a place in which those differ.
>>MARICAR MARQUEZ: So tactile ASL follows the same structure as visual ASL. I'm just you know, receiving it via touch instead of through vision but there are certain accommodations that have to be made when you are adapting visual to tactile language. So it's very similar but there are differences that have to be accounted for.
>>DON HORVATH: But when I'm using simcom it's not always ASL because I'm thinking in the English language and I will be finger spelling more things to her that you know, I would normally sign and it's not going to be an ASL structure. I try my best but I'm thinking two languages. So others are better at it than me.
>>DOUG: A question for both of you about that. Do you feel like because of obviously how well you know each other as a married couple for the last 17 years that that makes communication like simcom which isn't the ideal scenario, does that make it, do you have a better understanding of each other because you know each other so well? Does that help the communication?
>>MARICAR MARQUEZ: If we're just talking then we'll just sign. There's no need to use English. But if we're around other people.
>>INTERPRETER: Don is clarifying the question for Maricar.
>>MARICAR MARQUEZ: Yeah, sorry, I misunderstood your question. I can understand Don very well. You know I can understand when he simcoms, when he's using ASL. We've known each other so long I'm used to communicating with him so we have a much better understanding of each other I understand him easier than other people.
>>DOUG: Let's jump back to both of your positions at HKNC. You gave a great overview of what those positions are normally but obviously things are different now because of COVID and I understand that in both of your positions you've had to make changes as a result of that. So can you talk a little bit about talk about your roles at HKNC again but now this time talking about the adjustments that you have had to make because of what's happening with COVID?
>>MARICAR MARQUEZ: Yeah. It's been challenging. You know DeafBlind people as a whole are very varied but in general even though there's varying degrees of hearing and vision loss independent living skills really have to be taught in person because the DeafBlind culture is so heavily dependent on touch. So there's a lot of showing people things via touch or handing equipment to them so they can feel what it feels like so it's really hard to do things virtually. Now with COVID‑19 has really impacted our ability to teach those skills. We have had to modify our lesson plans and modify our teaching techniques to adapt to this new online environment. We're trying to do our best. We're being as creative with different techniques. My staff has been hard at work thinking about adaptive strategies that we can use in teaching skills remotely. We've been using Zoom and face time to watch somebody work and give them feedback that way but it is definitely a challenge. It's important that you know, the student also has to accept where they're at as far as their independent living skills. So we're trying to do our best to provide as many resources as we can as well as provide virtual instructions. We're enlisting the support of family members or people at home with them because there's no instructor to explain things. We have specialized equipment at Helen Keller National Center where things are braille or with raised dots and people don't have that in the home so we've had to get help from family members in supporting the students.
>>DOUG: To everyone tuning in if you have questions throughout this broadcast feel free to write them in the comments system. I see a lot of familiar names popping up and some that aren't. I know we've had people tuning in from all over the place. I would love to know where you are watching from so if you could write in the comments where you are watching from it gives a great sense of ‑‑ if you have a moment and you can write in the comments let us know where in the world you're watching this broadcast from we would appreciate that. And I want to let Don and Maricar that you are getting a lot of love in the comments here. There are a lot of people who are big fans of you as well. So I just wanted to let you know as we continue here.
>>DON HORVATH: Wonderful.
>>DOUG: So Don, question for you. I know that obviously technology had to become our best friend during this time where we're all communicating remotely. Sometimes it's our worst enemy as we've learned with these live broadcasts sometimes things don't go quite the way you've planned but from a technology how has your job changed and what technology changes have you made.
>>DON HORVATH: That's a loaded question. It's changed a lot. Especially I had a lot of students that recently came in for evaluation. And normally what we do during evaluation and in, during the beginning of the first training period is recommend equipment. Because the student is just learning about the best type of technology for them. And what happened was I had about three or four students that had just come in, just finished their evaluation and all of a sudden they had to go and now they went home and I'm learning more about what they have at home you know, some have more than others but some don't have the appropriate equipment. So the first challenge is, okay, how do we get that equipment? Is their ICC program up and running? How does that equipment get delivered to them? Because there's some strict rules about you know, they have to meet and set up the equipment. How do we successfully get them that equipment without the contact? So we are thinking about that. And just evaluating their skills again, on what equipment they have. I had somebody at home with computer screen that was too big for them and they were having problems accessing it. So one of the things that we had to do was I said okay get your iPhone, take a picture of the screen and text me that picture and I would circle what I needed them to find on the screen and I would circle it and they would have to look. I would send a text back, they can enlarge it using magnification on their iPhone and find what they needed to click on, on the screen and that had to go back a gazillion time. Then we take a break. For all that we accomplished one small part of the bigger picture. It took a week for that to happen. I involved the low vision specialist. I put my iPhone, I clipped it on my shirt. I said is this okay? We're incorporating a lot of different, creative ways to make this a successful training for the student. I think it's worked in a number of different scenarios. I have two hard of hearing students I work with. One I call up and we work on voice over with their iPad. The other I call up and we use the Jaws speech output program and I can tandem into his Jaws on his computer and I can work together and I can inform him of the commands that he would need to do to access all the stuff he used to access before using a mouse and pointer, now he can do all that using keyboard and short cuts listening for access output so we can access his computer again.
>>DOUG: Sounds like each student has different needs and you find ways to tailor for each student so sounds like a good time for creativity in your department. A question for Maricar. You were describing how you communicate through tactile ASL through touch. But obviously you are having to do your job remotely where you are not able to communicate tactilely with your co‑workers like you normally would. So what are some changes that you have had to make around that in order to communicate remotely during this time?
>>DON HORVATH: This is Don. I just want to add that I do not interpret for Maricar at all, because I have to do my job and she's busy on her job so now she will inform you how she's doing all of that without an interpreter. It's pretty amazing so go ahead.
>>MARICAR MARQUEZ: Yeah, since Coronavirus has spread, we've been at home. There's no way to get any tactile interpreting services or in person meetings. We have those every day when we're at Helen Keller National Center but at home we haven't had those. You know, I use interpreters for everything. For every meeting, almost, you know, every class but we both have our own jobs to do so I can't have Don interpreting for me all day every day. You know, Zoom is something that a lot of people have been using. It's what we've been using for our meetings. All the supervisors of Helen Keller National Center meet, all via Zoom but it's visual. I didn't have any experience with Zoom before this but I had to figure out how to use Zoom with braille technology. It's impossible to use Zoom with Jaws to make it accessible N on a braille display. I didn't want to be left out so we tried a couple of different approaches and platforms. Not all platforms are accessible with a braille display. It's also difficult to navigate around certain apps using a braille display. So some are more easily navigable than others. I will join on Zoom and I can sign like what is happening now and someone can voice for me but the interpreters email me so I can read in email so I know what is being talked. About I have a Fitbit and Apple watch so I know when I get an email. I am a little bit behind than everybody else and thankfully everybody has been very, very patient in giving me extra time to catch up during these meetings but I can participate because I am reading these emails and if I want to make a comment I tell the interpreter and everyone pauses so I can catch up and I can participate in the meetings pretty fully.
>>DON HORVATH: I just want to ask Maricar are you using the computer for email and your iPhone for text?
>>MARICAR MARQUEZ: Yeah I have them on separate devices. So I get text messages on my iPhone and simple messages from the interpreters like go ahead and make your comment or something like that. But I use a Focus 14 to pair with my iPhone when I am going out and about. But at home when I use my laptop I use a focus 40. It is a little bit bigger and better for email so I use my Focus 14 on my iPhone and focus 40.
>>DON HORVATH: She looks like a concert pianist. She has a braille display on this table, another one on this table and when she goes it's your turn to use Zoom she's like this and she's ready to go and after she puts her hands down she goes back on to the braille display. I've had the luxury of watching that from like all the team meetings that we've joined, and the interpreters will be like Maricar's just catching up. You will see her move this way, this way and when she is ready she will sign to the camera.
>>DOUG: Thank you for that description. It's helpful to paint that picture. We have a question from Kim Norton. She asks what is a Focus 14 and a Focus 40?
>>MARICAR MARQUEZ: So they're two different models of braille display. The reason Focus 14 is called 14, it is how many characters. That's a Focus 14. Six dots, each of those is a cell. There are 14 cells. That makes it a Focus 14. A Focus 40 has 40 cells so it's a lot larger.
>>DON HORVATH: And you don't have to refresh it as much so you can read more on the line before having to press the button to refresh. So basically you are going to get half a sentence and when you refresh the other half of the sentence it comes out with a period so you know that's the end of the thought there.
>>DOUG: For those who might not be familiar with Braille, a question that pops up for me and I imagine some other people have it is how fast you know when you are really proficient at braille how fast can you read messages through braille?
>>MARICAR MARQUEZ: I learned braille a long time ago. I started learning whether I was 22. I didn't use it when I was 22 but I still had vision but I knew one day I would need it so I started learning early so I could make that transition easier for myself. I have been using braille completely for about 8 years now. People that are born blind can, they're better at reading, that reading from a young age they are so incredibly fast. When I read I am nowhere near their speed. It is a slow process to learn. You have to adapt to using your finger tips to feel characteristics. It is not easy. It feels differently whether you are reading braille on a piece of paper as opposed to a braille display I just showed you. I love the Harry Potter books. I read the book 1 but by the time 7 came out, I had to read it completely in braille. So because I was motivated like I really loved those books and I wanted to be able to read them, I would practice as much as I can. It took me about 20 minutes to read one page when I first started which is really, really slow but I started to get faster and faster. Now I read at a pretty average pace. I would say you know, I can keep up pretty much similar in speed to what I was able to do visually.
>>DOUG: You know Maricar you are the second person in four episodes of Feeling Through Live that have shared their love of Harry Potter and I remarked that I have never read any of the books and I feel I'm getting a sign that I need to start reading Harry Potter.
>>MARICAR MARQUEZ: Yeah, you definitely do.
>>DOUG: So to follow up to the braille comment we have a question from Barbara who asks: For those people that have been using braille their whole lives can the fastest braille users read just as quickly as people who are visually reading?
>>MARICAR MARQUEZ: It's individual. So it depends on the individual skill level just like some people read faster than other people visually, some people going to read braille faster.
>>DON HORVATH: I am going to chime in. In college I wasn't the fastest reader and the stuff that I'm teaching my students has benefited me. Like I use voiceover while I'm reading one of the Kindle books on my iPhone. I will be reading along with the speech output so I can read that book a little bit faster for myself. I will turn the page and I will do that. It's fun and number two it helps me read faster. So some of these things that we teach can be useful in our personal lives as well.
>>DOUG: That's a really great point. So I just want to note it's really great for those tuning in, I see people are tuning in from all over the place. Canada, Los Angeles, New York City, Pittsburgh, all parts of New York and Long Island and Washington and Delaware. We're so glad a platform like this allows us to connect with so many different people. If you are just tuning in I am speaking with Maricar Marquez and Don Horvath both employees of Helen Keller National Center and also a married couple for 17 years. Maricar is a supervisor in independent living and Don is a Senior Technology Instructor. We've talked about the ways in which COVID has forced them to make changes in their position. And I want to transition, oh we have Northern Ireland as well. Thank you Donna for joining us from Northern Ireland. But let's talk about how COVID has affected your personal lives. How do your personal lives look different since COVID has been occurring over the last number of weeks now?
>>MARICAR MARQUEZ: I am a very, very active person. So before COVID I was really involved in a lot of different activities. I'm a runner. I've run the New York City marathon before. I've competed in triathlons. I have gone parasailing. I like to get out and do a lot of stuff. I run with my dog Cliff who is a black lab and a guide dog. Achilles Runners, we go out all the time. But now because of COVID, we can't do that anymore. So it's not just me, it's everybody that is affected. We're not as active as we are used to being. We have been home a lot more. We like to bike ride together. Don and I go on a tandem bike on 40‑mile bike rides. Now we just don't have the chance to do that as much. So it's been a big challenge. You know, we've got to figure out different ways to be able to keep ourselves engaged while we're staying home.
>>DON HORVATH: Like playing games such as Scrabble and Upwords, we have those in braille.
>>DOUG: I'm going to hold one moment for an interpreter switch. We just switched interpreters which is customary to do in longer conversations such as this. So continuing the conversation, yeah Maricar I definitely understand that you are very, very active so I can imagine it's challenging to be cooped up inside so much.
>>MARICAR MARQUEZ: Yeah.
>>DOUG: So let's, I'd love to talk a little bit to get to know you. We got to know you both as professionals at HKNC but one of the great things about having both of us join today is that you have been married for 17 years. I would love to get more of a sense of your relationship. Maybe we could start with how you both met each other.
>>MARICAR MARQUEZ: Well, we met at work. We were both working in the dormitory at Helen Keller. We were friends at that time. When Don first started he didn't know sign language. He had very, very basic skills so mostly how we communicated was writing back and forth. We were both dating other people. We had broken up with our significant others. We were going out as friends. His signing skills were getting better. He was learning naturally and developing that skill. But yeah we started off as friends and it progressed from there.
>>DON HORVATH: We've had that question asked to us when we teach a sign language class for the first time, and my response is that I met her on a blind date. And we have a quiet class until I said no, no, no and then she tells the story. It's an ice breaker.
>>DOUG: That's a good ice breaker there. Maricar was just mentioning that your ASL skills were maybe, that you were in the process of ‑‑ oh sorry.
>>MARICAR MARQUEZ: Going back to Don and his signing skills, a funny story is that when we were friends working together in the dorm we were going out often and he was developing his skills. We had gone out to eat at Burger King. We were just sitting at the table eating and he kind of just looked at me and he's like, so, we're friends, but you know, are we more than friends or can we be more than friends? And so you know I knew his signing was not that great so I signed the sign never and he didn't understand what that sign meant and so I had to finger spell it, like N, E, V, E, R. Like it's never gonna happen and obviously I was wrong and you know what I learned from that? Is that you never say never.
>>DOUG: Speaking from the guy's perspective Don I can definitely feel your pain in that moment but as I kids say definitely a lot of respect for shooting your shot and taking your chance in the moment. So it worked out so whatever blow to your ego might have happened at the moment, it looked like love prevailed in this case.
>>DON HORVATH: No more Burger King!
>>DOUG: I think to that question I've obviously had the opportunity to meet both of you over time and get to know both of you and you know everyone that's in your lives on a regular basis obviously just knows you as Maricar and Don like anyone else. For those of you tuning in who aren't familiar with the DeafBlind community and maybe hearing about for the first time a relationship between someone who is DeafBlind and a person who is sighted and hearing, the first question around that is for Maricar had you ever dated anyone that was sighted and hearing before Don and Don had you dated anyone who was DeafBlind before Maricar?
>>MARICAR MARQUEZ: Before I met Don yes I had dated some deaf individuals, hearing individuals. But I never believed or thought that I would marry somebody who was hearing. But you know it's just what happens. You know you meet somebody and you just fall in love. Doesn't matter you know, if you are DeafBlind, sighted, hearing. When you love each other you just are able to overcome so many obstacles, learn the communication and it just works.
>>DOUG: And Don I'm curious on your side that question from you.
>>DON HORVATH: No I never dated anybody DeafBlind before. So I mean, no. We would go to like, what do you call it? Deaf happy hours together and then I had met like a hard of hearing young woman there, and you know, I remember when we were dating, well, how did it go? We would always talk about who we dated and what was happening. And I think it wasn't until you know she got mad at me for some reason at work and we got into an argument and you know, it was some party I was going to and I said oh, I don't want to go to that party with you. So I asked another girl out who had recently started at work at that time and the co‑worker up there heard me and was friends with Maricar and she said, rumor, and Maricar found out. I got bad AOL‑IM at the time. So two things Maricar helped me out with, my signing and my typing. I got really fast because she said what's taking you so long to type the response back you know? I said what is this? Why are you so mad? If I am asking this girl out, we talked about every other relationship. So something is, something started, I think a spark in there.
>>MARICAR MARQUEZ: I was mad, but you know at that time I didn't realize I had feelings for him and I was just really recognizing that, I actually had feelings for him and I was falling in love.
>>DOUG: And Don you mentioned that early on your signing wasn't so great. I'm wondering just what that was like to navigate that and getting to know someone obviously on a, in a personal intimate sense how, what that was like, the learning curve as far as communication and learning to sign better while on the fly with someone that you are getting to know really well.
>>DON HORVATH: Again, what happened where I didn't understand what she said, I would drop her off, get back to my house and get on AOL to make sure I understood what she was saying. She would get so mad at me but it didn't stop her from calling me the next day asking me where we're going to go. But you know, also I think I picked it up pretty good, like I always learn best by watching someone sign. And you know at first when you do sign language you don't realized how important your facial expressions are to the grammar and syntax of what you are saying, how your body language is important. And it was only six months that I was at the residence and one of the deaf staff said we understand you clear. You are improving better. It's those small words of encouragement that keep you, thank you, thank you very much. So you think you may look silly to the hearing world but you are actually, that's how, that's the body language, the facial and I don't have a poker face, so that really helps because if I am shocked I'm shocked. If I am excited I'm excited. You will see that in the way I move and communicate with people.
>>DOUG: And so now flash forward obviously, that was a long time ago and you have now been a couple for a long time. What is like, you know when things are normal and you are able to be out in the world what might a night out look like for the both of you?
>>MARICAR MARQUEZ: Well we're pretty active. We love to go to the theater. We love to go to the movies. Some theater performances do provide interpreters, some do not. If they don't provide interpreters then Don will interpret for me. For example: He loves Star Wars. And I've known the story and he tends to watch them often and he will interpret them for me. So when we went to the theater to see the new Star Wars movie, I think that was Force, it was the newer one, the Force Awakens. So we got there early in the morning because it was less crowded. We sat in the back and he actually brought these little figurines of the different ships so that way he was able to actually emulate what was happening on the screen with the figurines so I can feel it in realtime as he was explaining the story of what was happening. So he was able to make that experience more tactile for me.
>>DOUG: That's a really informative description there I think for those of us who have never seen that method use of communication. I can only imagine having seen some of the Star Wars movies those scenes are so intricate I'm sure having objects to demonstrate what's happening would be a much clearer picture than trying to describe it through signing.
>>MARICAR MARQUEZ: Uh‑huh.
>>DON HORVATH: And it helped that I saw it like three times before the time that I would interpret it. So that was the first new of the Star Wars movies. The second one she was so excited that it was coming out because she liked the Force Awakens so much we went that Saturday morning together, and I was like oh my goodness I'm going to have to interpret two hours and whatever and somebody did me a favor and they pulled the fire alarm in the middle of the movie and it gave me a break from signing so I thank that person who did that even though everybody in the theater was mad at you.
>>DOUG: I love the earnestness of you being happy that a fire alarm was pulled while everybody else was upset about it. But I think those who aren't familiar with tactile ASL there isn't a great reference point of the physical demands of it over time. Maybe both of you can speak about speaking to each other throughout a day what are physical demands of tactilely signing with each other.
>>DON HORVATH: I will start talking about like if we wanted to go on a date. I was looking on the internet seeing we can get cheap tickets for Frozen on Broadway. So that morning I interpreted the movie, I took a break in between and then we went to the play and we, I interpreted the whole play. So I mean that's like a special day. But on a regular day you know, it's not as taxing for me because I'm not interpreting for anyone. It's just me. So if I am signing to Maricar, that's not a problem. I mean we can talk for a long time because it's that one on one and I'm not interpreting for somebody else. So I think in the relationship you know, yeah we need a break. I enjoy going to concerts and movies and riding my bike miles and miles away you know, and then coming back. A lot of times we're together on a tandem bike as Maricar mentioned before. We love to ride. We've ridden from our house in Queens to New Jersey and back. And hills and everything so we're, we love biking. So that's something we do together and separately when I can. I don't like to run so she runs with the club and her friends. We just did a triathlon this past summer where I did the biking and her friends did the running, special shout out to Erin, Cliff and Nora who did the swimming with you. So yeah.
>>MARICAR MARQUEZ: Also Don doesn't like heights. He has a fear of heights so I wanted to go hot air ballooning so I went with a friend just for fun for myself because Don didn't want to go because he doesn't like those types of heights. So it was a really great experience but while we were in the hot air balloon he was actually in the chase car chasing us and he had to watch where the balloon goes and follow us. Where he would land the was right in the middle of a neighborhood. We were in somebody's driveway between two houses. It was about 8:00 in the morning on a Sunday and the girls and the parents that were in the house actually were still in their pajamas and actually came out to see this hot air balloon just landing in their actual driveway. And because we had to land there they actually had to bring the whole balloon down, fold it up. We were able to sit on the balloon itself to compress it to fit it back in the van. It was a lot of fun.
>>DOUG: That's what we call a grand entrance right there, arriving by a hot air balloon.
>>MARICAR MARQUEZ: [laughing]
>>DOUG: A question about the tandem bike riding, a question from Cindy about how you communicate with each other when you are on a tandem bike?
>>DON HORVATH: So I'm going to preface this by saying don't try this at home okay? I'm very skilled at riding a bicycle you know? Not to mention when I was younger I fell off my bicycle a couple of times and that's how too tooth got knocked out but I'm skilled at biking right now. When I ride the bike I make sure there's nobody else around when I am communicating with Maricar. I have made sure the environment's okay. And if I want to inform her about something I take my right hand and I will go back and tactile sign it to her, and she will know like where we are, what the view is like. I will be able to tell her what is happening. One time just for example, I don't know what I'm telling her. I just see things and I have to tell her. One time she told me she wanted to go to the chocolate bar for her birthday and I said the Chocolate Bar? Where is that? I said where is that? She said it's downtown. Remember you explained that to me when we were riding the bicycle through the East Village? It's over there. I said oh my goodness, so a lot of these things I don't remember telling her. I will see something, oh a chocolate bar while I'm riding a bicycle. Yeah.
>>MARICAR MARQUEZ: Also remember we were biking, the 40 miles in New York City and we were on this long ride and I had to go to the bathroom and you know of course I'm in the back seat of the tandem bicycle and I'm like how do I tell him I had to go to the bathroom? I used a communication tool called haptics and I drew on his back the letter T and I remember he kind of popped up a little bit and he was able to reach back to me and I told him I was able to go to the bathroom. So we use haptics as well as tactile sign language while riding to be able to communicate. We've also established a few different cues with one another. It's a little bit of a shortcut to be able to communicate on the bike.
>>DON HORVATH: Not only do we tandem bike but we tandem with a kayak because. That's harder because you are a distance away. You don't want the boat to tip over. We've capsized one time in the Manhasset Bay but that wasn't us, no! We even had the dog with us.
>>DOUG: Sure Don blame it on the boat.
>>DON HORVATH: She looked back at me and smiled because knee knew we were going over. We had Dixie in the boat, Dixie is climbing up my head, she had a life preserver and we are in the middle of the bay and we had to fly down a boat and I had to go get all the stuff in that tandem boat. We have a better one than that. We tap the side of the boat so she knows she needs to stop rowing or whatever you know? And I tell her stop. I will tap the side and then another two taps she will go back to doing that. So, to actually rowing. So Weaver done that with the kayak and the canoe. And those were fun times.
>>DOUG: So we're kind of at time here. I hope we can just go a few minutes longer. This is to the interpreters and the captioner on the call here. There are just a few more things I want to get to. Shoot me a message if you have to go now. But we have a question for Don. Do you ever hear someone voice interpreting for Maricar and feel like they're missing something she's communicating because you are so close to Maricar and do you ever correct them because you know what she's saying better than the voice interpreter in certain cases?
>>DON HORVATH: I don't correct. I will maybe like in a discussion I will add to that if there's a discussion after that or if I can chime in, raise my happened and say oh this is what happened. But I never want to correct an interpreter. I have been in that role and I just feel like you know there's a better way, if there's a better way to feed the information that's nicer than to say no you are wrong, let me explain this better, no.
>>DOUG: So with the last couple minutes here of this conversation, back to, you know, that was really informative how you described how you go to see a movie in the case of Star Wars having the figurines to act out the battle scenes, can you tell us what it's like to be out on a double date with another couple or out with other families, when you are with other people, how you negotiate that?
>>MARICAR MARQUEZ: Well, when it's with family, everybody within my family, they have different skill levels. Don is the most skilled out of everybody but I also have a DeafBlind sister they can communicate with. So some members of my family maybe just finger spell, maybe they can sign or we have to use other modes of communication where we text back and forth to communicate or we use gesturing so we make it work.
>>DOUG: Are there times where maybe if you are out with another couple that doesn't sign like how you might navigate that situation?
>>DON HORVATH: This would be similar to what is happening today. It would be you know, me interpreting what they are saying or trying to get involved, you know. It's different for them of course and it's really you know, I mean I do this all the time so it's not, she's not going to get everything that's involved in that communication and I've informed them. I'm going to miss stuff because they're not going to know to turn take. I don't want to say remember you have to slow down and turn take. I want the conversation to happen naturally because I don't want people put off and not wanting to go out with us. It's happened. It's like I just feel like the guy's talking because her voice is my voice. It sounds like maybe I'm dominating the conversation, but I'm interpreting for her, you know? So it's not like right now where we have female interpreters interpreting for Maricar and it feels more natural for the people watching and that. So if I go out with Maricar and the other couple doesn't know sign language it's just, it makes it hard on me, I will be interpreting the whole conversation.
>>DOUG: A question for Maricar. Are there ever situations where you are out with say another couple or other people that where it's frustrating for you or anything like that?
>>MARICAR MARQUEZ: I guess, but it's normal. For anybody who is DeafBlind you experience frustrations. You miss out on some information. Like I had mentioned earlier, I grew up sighted and over the years I lost my vision and I really started to miss out on some of that environmental information or nuances in a conversation. But you have to adapt. You go from being a visual person that you use our visual senses to now you focus on tactile information and you are depending upon somebody giving you that environmental information.
And you know, so you have to be patient. Sometimes you can't get all the information and you have to really kind of make that judgment call, you know, if the person that you are depending on maybe they can't provide you all that information because it's too much, that's fine and you know you have to look at both perspectives.
>>DOUG: That's well put. And for your final question here today, it's kind of related to that. From just speaking, a question to you two as a couple, you know I think obviously like any couple you spend a lot of time with anyone and you might, there might be times where you're frustrated or upset with each other. But obviously for you two to communicate you need to be touching each other. How do you navigate you know just quite frankly, how do you navigate an argument? I you mean curious from that perspective, people who aren't familiar with a form of communication where you have to touch each other.
>>MARICAR MARQUEZ: We're like any other couple. We communicate, you can feel that body language through the hand. So if somebody is frustrated or angry I can feel it. I know it. And I also know Don. I know him. I know his movements. I know the pace of his movements. And a lot of times the pace of his signing really matches his tone or his feelings and emotions at that moment.
>>DOUG: And before we conclude today Don is there anything you would like to add to that.
>>DON HORVATH: Yeah I just scream. I get so mad I scream. I yell. [laughing] So I think it's normal you know if you are angry, if you have an argument, you have feelings, they're going to come out. But you know, I think with everything at the end of the day, you know, I think everybody has those situations in a marriage and then you know, you find ways to, you know, try to work things out. I mean, and you know, I think, I don't know. Anything else to say?
The question is did I have any perspective on you know, I think sometimes it's best to, you know because we're always attached to each other, sometimes it's best to have your own life and that's I think for every person. You need to have what you like, what you're interested in. It doesn't always have to involve the other person. So I think that's the important piece to take away, you know, dependency, is one thing. But learning how to access the community through volunteers, SSPs and finding other ways to do things that you can bring back to the relationship and say oh this is what I did today. Oh wow that's cool! I did that. She's not interested in concerts. She's gone to a few but you know, it's not as interesting for her and for me, I mean I prefer to go myself and enjoy rather than interpret something that I enjoy, you know? So I think that's important that each of us has our own interests. We have common interests and we have separate interests.
>>DOUG: Well that's so well put. That's a great place to end today. I would love to keep talk with you both but we're at time here. Thank you so much for joining us today. I hope we can all chat again soon. Thank you for tuning in to feeling through life. We will be doing these every Friday and perhaps at some other episodes in addition to those Friday episodes. So keep an eye out for future episodes. Thank you so much to Maricar Marquez and Don Horvath for giving us a view into your life as a married couple. Thank you so much to everyone for tuning in and we will see you all next time. Bye.