[Doug]: Welcome to episode 11 of Feeling Through Live. Today, we're joined by Chris Woodfill. Who's been a guest in the past today. We're going to be talking about his transition from Deaf to DeafBlind culture. And Chris, I don't think there's a better way to start this conversation then to take us all the way back. Uh, I know you, you grew up in Wisconsin. Why don't we, why don't we start there at the beginning?
[Chris]: Hi everybody. I'm really excited to come on today to share my experience. My life's journey from being a deaf person to a DeafBlind person. I was born in Wisconsin. There are six of us in my family, so it was my parents. I, myself, two sisters and a brother, everybody in the family is hearing except for me when I was about nine months old is when my family discovered I was deaf. And it's a little bit of an interesting story. So I'll tell you that one. Now we were in a family room, uh, doing something, playing with toys, maybe. I don't know. Um, my dad and I were opposite each other. Um, we were playing, you know, like father and son do. And my dad, my dad walks behind me and I was in the stage where, when someone left the room, I would cry. My dad walked behind me and he noticed that I started crying. He would call my name to try to let me know that he didn't leave. He was just behind me. Um, and I still cried. He got closer to me, kept calling my name, Christopher, Christopher, no response from me. So my dad thought that was kind of strange. I'm finally, he walked back around in my line of sight and I saw that he was back and I stopped crying and got all excited. And we played again. So that's what got my dad curious. And he experimented with it a few times. He would walk behind me. I would cry. He would call my name. I wouldn't respond. And then he'd come back in my line of sight and that'd be fine. Finally, he started to think that maybe I couldn't hear, he went to the kitchen, he got some pots and pans and stood behind me and bang them together as hard as he could. I didn't respond at all. You know, a baby would cry if they could hear that. And my dad knew right away when he did that and I didn't respond, Chris is deaf. There's no doubt about it. He has to be. The pots and pans kind of sealed the deal. I think my mom was out shopping at that point, or I dunno, she was out doing something. She got home. And my dad told her what he had discovered so to speak. And he said, Chris is deaf. My mom said, there's no way not possible. He's not deaf. There's been, nobody deaf in our family. How would that be the case? And she's right. There has never been anybody deaf in my family. No one else in my family has Usher syndrome. It was just me. So my mom did not think that was possible. I was on a high-chair in the dining room and my dad brought my mom into the kitchen, went behind me, did the thing with the pots and pans, and my mom freaked out. She's like, how can you do that? That is awful. That's such a terrible thing to do. She started a huge argument with my father. But my dad pointed to me and just said to her see, he didn't react. And my mom slowly but surely accepted that news and that's how they figured out that I was deaf. So, I was about one when I had that official diagnosis for the first year of my life as being deaf. There was a program, the John Tracy Program. I don't know if you know the famous actor Spencer Tracy from the '40s and '50s. And he had a deaf son named John Tracy. That's where the name of that program came from. That was an oral program. And it focused on teaching how to speak how to use any useable hearing if you had any, but that didn't do anything for me. I got nothing out of it, so my parents realized it wasn't going to benefit me at all and dropped that plan and it was on to plan B. So, another story. I grew up like I said in Wisconsin and I lived on a particular street and there was a street kind of parallel like the next street over from where I live. And there was another family there. And my mom knew of that family but they didn't really socialize they weren't friends or anything they just knew of each other. And they were a deaf family that lived a street over. After we realized that John Tracy program wasn't going to work, my mom walked me over and knocked on the door of that family's house. The matriarch of that family is named Shirley. That's her name sign, but her name is Shirley. Their last name was Volpintesta. So there were the Volpintesta family. Um, Shirley was the mom and mom knocking on the door. And my mom's side, my mom tried to talk to her and Shirley said, you know, pointed to her ear and said, I'm deaf. And my mom had this moment of, Oh crap. How am I going to communicate with this person? And Shirley told her, hold on a minute, came back with a piece of paper. And they started writing notes to each other. And my mom explained to this is my son. His name is Christopher. He is deaf. What do I do? So Shirley got very excited and kind of took me under her wing and wanted to help my mom. But she was very excited that, you know, there was somebody else and deaf in the neighborhood and she kind of adopted me a little bit, so to speak, but Shirley explained to my mom that there's a wonderful deaf community and that there's deaf schools. And there's all these things that Christopher can be exposed to that my mom was not aware of. She suggested that my mom hire an ASL teacher and American sign language teacher to come to our home and teach my entire family how to sign. She suggested I don't, I don't know how long I was a baby. I don't remember, but she suggested that the ESL teacher come once or twice a week. And I think it was until I was about two or three and my family learned to sign, the woman who's name that came over was Edith. Last name is Smith, Simmons rather. Um, and she came twice a week, I think for two or three years. And my entire family learned how to sign once my family was comfortable enough with sign language, we stopped using for service, but that was kind of the beginning of my life as a deaf person. So I guess I'll stop there for the moment, if you have anything to ask I, before we move on.
[Doug]: Yeah. Well, you know, I want to go back to that moment for a second. The pot and pan moment, you know, obviously your father didn't start with the bang of the pots and pans. He worked his way there when that was kind of the final test, but I can imagine this moment of him showing it to your mom and your mom, not really having that context and being horrified that, that he was potentially doing something really terrible to you. So that's just such an interesting visual moment there. I can see, you know, one parent who's already kind of come to this conclusion and the other parent that's not quite caught up yet and really just confused and horrified at what's happening in that very moment, but that really, you really paint a very visceral picture there. But yeah, that's such a great setup and I just want to take a moment to just address anyone who's signed on since we started, we're speaking with Chris Woodfill from the Helen Keller National Center, and he's really just gone back to his childhood. The topic of conversation today is his transition from Deaf to DeafBlind culture. And he's just talking about growing up in Wisconsin. Um, his parents learning when he was a small child, that he was deaf and we're we're at that point of him, of his family learning sign language, to be able to communicate with him. And, uh, yeah, no, that's a really great setup. So, so where, w what's so what's the next step in this journey? So you're still, you're still very young, you're deaf, and, where, where do we go from here in your, in your story?
[Chris]: So right after that, there were two things that kind of happened simultaneously. The first thing was the Volpintesta family. They had kids that were similar in age to my brother, actually let me back up for a minute. I am the youngest of a family when I was born. My oldest sister was 14. My second oldest sibling is my brother who's was a year younger. And the sister, the one who's who I'm staying with right now was 12. So my parents were a little bit older when I was born. There was a larger gap between my next oldest sibling and myself, the little than Testa family. The parents were about the same age as my parents and their kids were about the same age as my siblings. So they would play together all the time. They go play baseball, they'd go play games. When were older, we would go to parties and go to bars together. So we hung around that family. Quite often, we were invited to their family activities, we'd have dinners together. Um, and we would use sign language the entire time, which was really amazing at that point. My family signed pretty well. Um, and of course their family was deaf. So we were able to have full evenings in sign language. It was great. I don't know. Second thing is my next oldest sister, her name's Lisa. She actually became deaf when she was 17. At the time I was five. She spiked a really high fever and that caused her to lose her hearing. And she's still got to this day. Um, I do have a story. It's not the most positive story possibly, but I'm going to share, um, my mom sat me down and said, no, your sister is, has lost her hearing. She got really sick. And my reaction was to be completely thrilled. I was so excited. I was running around screaming that I had another deaf sibling. Finally. Um, my parents were not expecting that response, of course, but as a five-year-old, I didn't know any better, but I had felt so alone my whole life. And I was, you know, kind of jealous of the family around the corner because it was so cool that they were all deaf and I wanted something similar for my own family. When my sister became deaf, even though it was unfortunate, I was excited. Cause I felt like we were one step closer to being, to being a Volpintesta family. Um, by the time I was six, my all of my brothers and sisters were out of the house. They went on with their lives, they started their own families, they got married, they had children. So I kind of became an only child when I was six. And it was the same with the Volpintesta family, all their children were out of the house too. So I didn't really have them anymore, either their parents were home and my parents were home and we would still visit them and get together. But, you know, it's just a product of time moving on. Oh, when it was time for me to go to grade school, I went to a mainstream school. I grew up mainstreamed for most of my education. And just to elaborate a little bit, mainstream basically means I went to a hearing school rather than an interpreter. There were a couple of deaf classes. Like I went half time, where there would be other deaf students and the teacher would sign. And then for the other half of the day, I was with other hearing kids or the hearing teacher who did not sign with an interpreter. So I kind of split my time between those two programs. Uh, this time I was in grad school, I was at the Wisconsin school for the deaf. And I'll stop there for now, Doug.
[Doug]: Yeah. Yeah. Definitely want to hear more about that in a moment, but I want to go back to that moment. You were just describing about, um, when you found out your sister was deaf. Um, I think that's so interesting in a lot of different ways, but you know, on the one hand you described, you're only five years old, so you don't, you don't really necessarily know all the different dimensions of what's happening at that time, but from your perspective, as you so beautifully, put it as being someone who kind of always felt a little bit on the outside. It, what this really meant to you as a five-year-old was, Oh, great. Someone else who's like much, really much closer to my experience. Someone who I can really connect with on another level that's in my family. And I think that is such a, a beautiful perspective to understand, particularly from the perspective of five year old boy, who, of course that's going to be the most, um, resonant thing for you. You're not necessarily thinking of what it means for your sister. Who's lived her whole life up until that point hearing and what she might be going through. You're you're just excited and that makes so much sense, but you know, what makes me think of another thing too, and I'd love for you to talk about this I, someone, who certainly, you know, very much on the outside of the deaf community, but has gotten a chance to connect with a lot of people in the deaf community over the course of the last few years through Feeling Through related endeavors. You know, I've learned that, and this is definitely a much bigger topic, but I've learned that that a lot of people in the deaf community, there's a very, very strong identity and a very, very strong culture there. And that, I mean, I guess kind of succinctly put, and there is a question in this for you in a moment, that what I've heard is a lot of people in the deaf community, certainly don't look at their deafness as a deficit in any way. They just look at it as how they perceive the world, which of course as anyone in their own situation would. But I think a lot of the time, what I've noticed in what the deaf community is pushing against from other people's perceptions is this is fighting the idea that they're lacking anything. Um, which again, I think any, anyone in any disability space would be, but I I'd love for you to speak to obviously the five year old boy in you was just really excited to connect on a deeper and more personal level with someone in your family and have a more shared experience. But what would you say to the topic of the deaf community, and how they, how they have to field these, these false perspectives of people feeling like they're missing something when they're actually really proud of who they are and how they communicate.
[Chris]: There are deaf people have a very, very strong identity and they don't feel like they're disabled in any way. Being deaf is part of being a cultural minority group. They don't consider themselves part of the disability community. They consider themselves a cultural minority and in being a cultural minority, they have their own language. We have our own culture, we have our own traditions and histories, you know, all the things that, all the things that come along with being any other cultural minority. Uh, so it's a very strong community identity. When people look at draft people, they tend to look at deaf people and feel bad for them, or think they're missing out on something. And we kind of look at them and go, why are you feeling bad for us? Oh, we're very comfortable being deaf. We're very confident in who we are as deaf people. I have a very strong connection with other deaf people and I love that community and that culture. So there's no reason for anybody to feel bad for me. I'm fine. I don't think a lot of deaf people feel that way. Um, it's a little bit odd for us actually to get that sympathy from people because we don't feel that for ourselves. So, uh, it's always an interesting response when that happens.
[Doug]: So I'd love to now go, we were back to your personal story. We were at grade school, so let's, let's pick up from there.
[Chris]: Right? Sure. I really had a wonderful experience at the Wisconsin school for the deaf. I loved that school and it was a great place for me. I had nothing negative, really. You know, there were normal kids things that went on, people got picked on. There was teasing, there was messing with, you know, things that happened at any school. Uh, but that's nothing out of the norm. What was interesting though, is that I constantly got looked upon as being a little bit different. I wasn't really like the other deaf kids. You know, my nickname at the Wisconsin school for their Deaf was Mars. Like the planet people would come up to me and say, hi, Mars, how are you today? What's going on Mars. Um, and people gave me that nickname, cause it seems like I kinda came from another planet so to speak, you know, I think we all have different gifts. Everybody's got their own unique skills. Um, but some of mine were things like a very high IQ. So I was always a smart kid. I'm not trying to brag or be egotistical here. But it's just one of the things that I was gifted, where I was above average intelligence and a higher IQ. So I've never tried to get into Mensa or anything like that. But I think I probably could have if I had tried, but it was those kinds of things that made me stick it out in school. It didn't really matter what the subject was. It didn't matter what the class was. I could read something, take the test and pass it five minutes later. I noticed other kids had to study for hours upon hours to pass tests. It was kind of a no brainer for me at school. And people looked at me like that was weird. They didn't understand how I was doing. So that's where that nickname came from. But that situation actually masked my usher syndrome for a very long time. And I'll explain what I mean by that. I was bored quite often in class because I found it so easy. So sometimes, sometimes teachers would explain things to the class two or three or four times. I understood it the first time. So the next several times the teacher explained it to me. I was busy counting tiles on the ceiling, staring around the room, counting tiles on the floor, doing whatever. And it kind of occupied my brain and get out of the boredom. The students were kind of used to me looking around the room all the time and I was never disciplined or told that I had to pay attention or look at the teacher. They kind of left me alone, left me to my own thoughts, left me and my own musings. Cause they kinda knew what was going on with me. I would daydream a lot. I would cry. I would do it all. I would read something else and I was off to my own devices with all of that, that masked my Usher Syndrome because the teacher would sometimes wave to get my attention to try to ask me something and I wouldn't see it, but they thought that I was daydreaming. What was really happening was I wasn't seeing the teacher trying to get my attention. The teacher never attributed it to my eyesight. Instead they just attributed it to my daydreaming and being on Mars, so to speak. So those two issues kind of conflated and I was never diagnosed with usher syndrome until much, much later. So it wasn't until I went to that as well, where that's the right time. It continues. I can pause right here before I get into that dog.
[Doug]: Perfect point of pause. So actually what we'll do right very quickly is do an interpreter switch. So we'll hold one moment for that. Okay, we're all set. Great. Um, so if you're just joining us, we're talking with Chris Woodfill Um, he's talking about his journey transitioning from Deaf to DeaBlind culture. He was born deaf. Um, and we're at the point in this story where he's starting to realize that, that there's something going on with his eyesight, but we're not to the point with him really understanding that he has usher syndrome and that, that he is in fact DeafBlind. We'll certainly get to that in a moment. Um, just want to take a moment to say hi to everyone who's just joined us and what I want to also let everyone know. Um, and people who were with us last night know this and I've already started to make some purchases, but we've opened up a Feeling Through store. So if you go to feeling.com, you'll see a store button, or you can go to feelingthrough.com/store. I'll pin it on the Facebook and write it into the YouTube chat as well. And we've got some really cool merchandise there. And the really great part is not only do you get to purchase some really cool either t-shirts or mugs or tote bags, but it also goes to direct directly supporting our sponsors in Helen Keller Services and also future Feeling Through Experiences. So if you want to check that out, I'm going to put it in here in the box here, feelingthrough.com/store. So feel free to check that out. We've got some really cool stuff up there. And so Chris, I also, I want to go back, to this moment of when you were talking about how you, how as you're realizing that you, that you might there maybe is something up with your eyesight. People don't really, your teachers and peers don't really understand that. And they just attribute to like, Oh, he's Spacey or yeah. Oh, he's just smart and checking out. And what I think of is, what I I've heard a lot with, anyone who has, a peer of mine or anyone who has a child who has a disability that oftentimes, it gets mistaken for like a heavy quotation marks, some sort of like character deficiency of like, Oh, he's just way too hyper when he has sugar or, Oh, he just dozes off in class or is Spacey like these kind of, um, really antiquated ways of very simply seeing a situation and labeling it as something. Um, and I just, I just think that is applicable to all sorts of situations for people. And again, I want to get back to where we are in your personal story, but I'd love to, if you could just talk on for a moment, you know, certainly you're you are still a young man. I know, but obviously I think a lot of things have changed, around awareness and education since you were a child to today. So just real quickly to talk on that for a moment. Do you see, as someone who obviously continues to work in the field, work with a lot of deaf blind people, deaf blind families, do you see a progression of understanding and awareness around, first and foremost, identifying deaf blindness earlier on, and then also people having a more accurate understanding of what's happening with a deaf blind child than when you were a kid?
[Chris]: Yes. There's definitely been a very big improvement. Especially to deafness. I think now like 99% of all babies born in the U S go through a newborn hearing screening. So a lot of deafness from birth is caught right away. That's very different than it was many years ago. There are still difficulties with identifying vision challenges. You can't really identify a vision challenge in a baby babies don't see clear right away. Anyway. Um, so it's a little bit hard and usher syndrome is often not caught right away. In addition to other vision issue. I think kids have a vision screenings now in grade school, like by the school nurse, you know, they go to the nurse and they're given that the, the piece of paper or far away, they have to read the letter. So maybe a nurse may detect that something is off and send them to a specialist or an eye doctor. So today usher syndrome is caught a lot younger than it used to be. Usually by four or five or six years old. There are some vision challenges that are identified and that usually leads to a diagnosis. But in my time there was no newborn hearing screening. There were no vision screenings at school, but today we have all those things to catch people not earlier, and to help identify what specifically their hearing envision is like.
[Doug]: So we're, we're at the point in your personal story where you're starting to understand your vision more, let's pick up from there. And cause I want to definitely get to the point where you, where you, you know, really realize for yourself that you are deaf blind.
[Chris]: Sure. Um, my senior year of high school, I had the opportunity to go to Venezuela. I went for one year as like an American field services exchange student. So I went to Venezuela for a year. It was absolutely wonderful. It's one of the most valuable, most amazing experiences I've ever had. And I loved it, but it was during that time that I noticed there was something going on in particular, something related to my vision. When I was at the Wisconsin School for the Deaf. I was so used to that campus, I was very used to being there. There was really nothing out of the ordinary, but Venezuela was a new place. Nobody knew me. I didn't know anybody. I was just kind of this transplant kid from Wisconsin and a brand new country with a new culture and Venezuelan culture is very blunt. So is the deaf culture. Deaf people will tell you that all the time. We're a blunt group of people, but Venezuelan culture is very similar. There's no beating around the bush. So people would kind of give me those bug eyes and look at me. They said, you have horse eyes. What do you mean by horse eyes? And you know, for horse racing horses get blinders on. So they don't work their heads around and use that peripheral vision, and aren't cutting into each other's lanes. They put those blinders on so the horses focus straight ahead. And that's how horse racing goes. So people in Venezuela, you know, would look at me and say, you're like a horse. You have horse eyes. I was in denial. Of course. I said, no at all. I don't know what they're talking about. And deaf people didn't know the term Usher syndrome. They called it horse eyes. They told me you have horse eyes.
[Doug]: So it looks like we have just a little bit of a glitch here. So Chris, if you can hear me, uh, I think your Internet's getting a little spotty there. So hopefully that'll settle in a moment. Um, this is a part of the, uh, part of the, the, what you get in a live stream here. So let's see if, if this settles down for Chris in a moment, let's go back. Chris, can you see the, Internet's getting a little glitchy right now. So we're seeing if that can settle in. Cause right now you're, you're a little glitchy. Yeah. It looks like it's settling in a little bit. Looks like we're getting there yet. Let's that's looking good. All right. It looks like we're back. Yeah. Oh,
[Chris]: I can see you just fine.
[Doug]: Still a little choppy. It's getting, it looks like we're settling in again. Um, yeah, it looks let's. Let's give this a try again. So it started getting glitchy when you were talking about horse eyes, maybe we'll pick it up from there.
[Chris]: Okay. Sure. So. After they had told me that several times I had no idea what it was, but, um, I started to get a little bit curious about it. Um and I started to become a little bit more aware when I got back to America after a year in Venezuela, I showed my parents, you know, there's this weird thing. They kept telling me that in Venezuela they said I had a horse eyes and my parents drove me to get tested. And also I was going into Gallaudet and Gallaudet requires it. I think at that time, what was going on, there were a lot of people with Usher syndrome going into Gallaudet and they didn't know that they had Usher Syndrome when they went to Gallaudet. So they started to require that everyone gets their vision tested before they come in. So they can be identified before they get to university. And I do have a little bit of a story about my particular diagnosis with Usher Syndrome. I went to the doctor, I always had glasses growing up. I didn't think anything of it. I just wore glasses. And I remember they would do like these light tests for, you know, it was like a couple of seconds of a white or yellow light. Uh, you know, and then I would get my glasses changed my prescription James, and you know, it was all good. You know what I is? That same chest was three minutes, five minutes long. And it started to really bother me. So I said something to the doctor that this test is too long. It's hurting my eyes at that time. It was 1993 and interpreting wasn't yet a widespread practice like it is today. There really weren't very many interpreters and medical appointments in 1993, maybe once in a while, you'd get an interpreter. But my mom was the one that was interpreting for me. And that was a terrible idea. You know, my mom went to talk to the doctor and I was just sitting there by myself. I had no idea what was going on. My mom dropped me off at my best friend's house. Her name was Amy. I said, okay, got dropped off at Amy's house. I was talking to Amy, hanging out with Amy. I hadn't seen her since we were in Gallaudet. She was then she had been to Gallaudet already. She had been there for a year. I was about to go in. I wanted to ask her all about what it was like. My mom came to pick me up probably two or three hours later. We got home and my family was sitting all around the table. Intervention style is my, my older sister. All my siblings were kind of gathered around and they were waiting for me. So something was clearly going up. My brother and my sister, Lisa were in another state at the time. So they weren't there. Um, so it was just the family that was in Wisconsin. It was my mom, my dad and my older sister. They were all sitting, waiting for me. My mom explained her perspective on what happened. And when she had told me was you have this thing called usher syndrome. They know what it was. So I said, okay. And they said, you will be deaf and blind. That was terrifying. So what do you mean I'm going blind. And then my mom explained again, her understanding, my mom said she felt like she had gotten run over by a train twice. So the first time was when I was nine months old. I mentioned my mom found out I was deaf. She said, my feeling was like, she had gotten hit by a train. She didn't know what she was supposed to do with a deaf baby. She didn't know how she was supposed to respond. And then at age 18 now, not only was I deaf, but I was going blind. So it was like the second train coming in, running over my mom. So I'm deaf and I'm going blind. My mom was completely overwhelmed and she didn't know how to handle it right away. You know, I had to try to play game a little bit and, and be supportive and tell her it was going to be all right. And, um, kind of take care of her in that way. At night, I called Amy. And that phone call really marks the beginning of my transition from deaf identity to deaf blind identity. And I'll pause there, Doug.
[Doug]: Yeah, so you were, you were talking about that moment where your mom found out and was really heartbroken in that moment. Could you go into a little bit more about what that moment was like for you? I mean, I'm sure as you kind of alluded to, at this point, you maybe had some awareness of that being a possibility, even if you didn't necessarily know what Usher syndrome was, but what was that moment like for you personally?
[Chris]: I had really mixed feelings about it. Now. I understand what I have, you know, so there was a little bit of, I don't know what to say, call it really, but like I always knew I had something. So now I knew what I had at the same time. I didn't want to have it, so I didn't want to have opposite of him. I didn't want that label associated with me. I wish I didn't have it at the same time. It was like a, it was finally getting a diagnosis with them thing. And I remember being focused more on my mom's feelings cause my mom was very emotional. That's the whole thing. So I remember putting my feelings aside and trying to be there for my mom. I wasn't really focused on myself at the moment I was, you know, trying to be there for my mom.
[Doug]: So I'm curious, I just want to hear a little bit more about now that you have this diagnosis of usher syndrome. Um, let's walk forward a little bit more there cause I want, what I want to hear is a little bit more of your life post finding that out. And then with the last part of this conversation, we can get to kind of comparing your life as part of the deaf culture versus, you know, growing into your identity as, as part of the deaf blind community. So let's walk a little bit more forward in now that you understand that you have usher syndrome, what, what life was like for you moving forward from there
[Chris]: That night when I spoke to Amy, but as I remember using TTYs before there were video phones, so we were tied into each other. There was no video communication available at all. So I told her I had Usher syndrome over TTY and she said, that's not a big deal. I have a lot of friends at Gallaudet who have that. It's no big deal. I mean, that threw me for a loop. I was like, huh. All right, well, I guess it's not a big deal. Then a week or two later, I went off to Gallaudet myself, Amy introduced me to a bunch of her friends. I'm in the process of introducing, she said, this is my friend, he has Usher syndrome, she has usher syndrome. And these people became my lifelong friends. And for them it really wasn't a big deal. Um, so it kind of became no big deal for me. I mean, we tease each other, we trip over something or bump into something and laugh at each other cause you have to, but I felt pretty good about it since then. During my time in Galluadet I really was not heavily involved in the DeafBlind community. They did have a DeafBlind club there. They met monthly, uh, you know, there was a particular room on campus that was designated. I think I went once or twice, but I felt kind of like an outsider. I wasn't really comfortable Um, it was awkward for me, so I was not heavily involved in that club. When I was on Gallaudet's campus. I wasn't comfortable with tactile at the time, tactile sign language. I didn't fully identify as a deaf blind person because I still had enough vision. The identity of being deaf blind scared me a lot still. So it was something I kind of swept under the rug and kept my identity as a deaf person. I hung out with a friend who had usher syndrome because we were the same age and we had similar vision things happening. Um, but I didn't really embrace my identity as a deaf blind person. When I was at Gallaudet, after I graduated, I went, came back to Wisconsin.
[Chris]: Let me back up. I want to, I want to go back to that story that Edith, the woman who taught me family sign language. So again, it's Simmons. She was the one my family hired when I was a baby to teach sign language for a few years. My mom noticed that there was something a little bit odd about her or maybe something a little bit different and she was from Texas. Um, so it was that maybe that was it. And my mom's from Texas. And she said, if you had nothing nice to say then no, say anything at all. That was her attitude. You know, very Southern polite woman after I graduated, I came back one career, sorry, it wasn't after I graduated wasn't while I was at Gallagher, I came back for one Christmas break And you know, the deaf community news travels fast. So everybody had heard through the grapevine. You know, those grapevines are really, really strong in the deaf community. So everybody I've heard through the grapevine that I had Usher syndrome, I hadn't spoken to Edith. We hadn't been in touch with that family probably 10 or 15 years. Uh, she, I guess, had moved on to other things and she contacted me kind of out of the blue and said, just so you know, I have usher syndrome too. My family was completely shocked that the woman who had taught my family out of sign also had officer syndrome. Most was exactly what I have at that time. She was in her sixties. I think, I don't remember, but we started to talk and I felt very comfortable with her and to see somebody who was that age who had usher syndrome helps me a lot. Unfortunately she passed away two or three years ago. She was 88 when she passed. And she had a wonderful long life, but it was really nice to see somebody who was older and functioning in the world. And it made me feel like I was going to be okay. But after I graduated, I moved back to Wisconsin. I taught, at the Wisconsin School for the Deaf. And at that point I noticed that I started to lose much more vision. I started struggling at that point with my identity. They know I'm a deaf person, but am I a deaf blind person? And I had this inner conflict going on. I didn't really know where I fit. I was sort of this identity crisis of who am I, the Wisconsin deaf community is fantastic. And I absolutely love that community, but I felt a little bit disconnected from them at the same time. I felt a little bit of a stronger, I hadn't, I didn't feel any strong connection to the DeafBlind community. There's not a big deaf blind community in Wisconsin. So there really wasn't anywhere for me to put down new roots so to speak. So I'll pause there.
[Doug]: Yeah. This is, this is all really, really interesting stuff, Chris and with the time we have left, a little less than 10 minutes, there's a few things I want to cover. So, I definitely want to get to the point in your personal story where you do feel comfortable and do really feel like a part of the deaf blind community and how that happened. And then from there with the very last part, leaving a little bit of time to then discuss some of the differences and also overlap of the two communities. So with about, you know, we can go over a few minutes perhaps, but with about like eight or so minutes left, I'd love to get to those two topics.
[Chris]: Okay, sure. So I can, I can spend some time talking about those too. So the connection that I feel to the deaf blind community did not happen overnight. It wasn't like I woke up one day and said that I'm deaf blind now. And I feel like I'm a part of the deaf blind culture. It was kind of a process of acculturation there. Um, there were things about deaf blind culture that I started to incorporate into my life. And I would say I was in my thirties, which was when I was having that big identity crisis. I'm 45 now. So yeah, my thirties, I started to really struggle kind of between the two worlds of Deaf and DeafBlind worlds. I didn't have a full understanding of what deaf blind culture was. The first thing that I did because I knew, I knew I needed help was I turned to the internet and I Googled DeafBlind services. One of the first things came up was Helen Keller National Center was top result. No, I had never heard of it. I never heard of Helen Keller National Center till I'm in my, until I was in my thirties. I imagine that I now meet associate executive director, but the world is a funny place sometimes, but I had no idea that Helen Keller National Center existed, never heard of it before, until I Googled deaf blind services. I read a little bit about it, just some research and make a long story. Very short. I wound up at Helen Keller National Center and training for myself that was in the summer of 2008. I did an eight week training. And that was my first real experience being immersed in deaf blind community. And then in 2011, there's AADB, the American association of deaf blind. They're a national consumer organization for deaf blind people. They have conferences, they had a conference in Fort Mitchell, Kentucky, and I went and there was a huge population of deaf blind people. I got to interact with many, many different people, and that was amazing. And after 2011, after that AADB conference, I felt like, okay, this is what it means to be deaf blind. I do feel like I fit in with these people. Maybe this is where I belong in 2012. I quit my job as the Wisconsin school for the deaf. And I started working at Helen Keller national center. I felt like that was really where my heart was. I wanted to work with other people that were DeafBlind. I felt like those were my people and I wanted to be with them. I felt like I was a part of that community. I felt like I could be a value there. You know, I got a job at Wisconsin school for the Deaf because at that time, my heart was with the deaf community. And now that I felt much more like a deaf blind person, I needed to move and work at Helen Keller national center, I kind of moved up the ranks pretty quickly there. I became an associate executive director, which is the position that I have now. Just very interesting how life goes sometimes. Um, I went from never having heard of Helen Keller national center in my thirties and 15 years later, I'm working there. It pretty much faster. So, um, to answer your next point about the deaf blind community, it's very different from the deaf community. I don't want to emphasize that point. It's extremely different. The deaf community values site Over everything else, hearing people like Doug for you, you are a, you value your hearing, probably over every else, the Deaf community values sight over everything else. The deaf blind community values touch over everything else. It took me a lot of time to become comfortable with that and to rearrange my values. Now I fully embrace it and touch is the highest priority for me, but it was a transition. You know, deaf community has very much visual ASL as a language, as opposed to a tactile ASL for the deaf blind community, accessing information is visual as opposed to tactile. So there are two very different modalities for accessing the world. The DeafBlind community is also much more diverse than the deaf community. The Deaf community does have some diversity, but the deaf blind community is hugely diverse. It makes it a little bit challenging because there can be a lack of cohesiveness in the community. And that's just because there are so many different needs and so many different vision and hearing statuses that creates a little bit of a challenge. So I hope that answers the two questions that we're looking for?
[Doug]: Very well. There's a couple other followup questions I have. I just want to check in with our interpreters real quick. Is it okay if I go over just by a few minutes? Is that okay? Yeah. Okay, great. I just, cause I had a couple more where it's such a great point in the conversation. I just want to ask a couple more things before we go, but I just want to go back to highlighting that moment that you described so beautifully. Um, I mean, I'm sure there were obviously a lot of small events that led up to it, but kind of this rite of passage or this real threshold that you described crossing from really identifying with the deaf community to the deaf blind community when you went to this conference with so many other deaf blind people. And you know, what I got from that was similar to the five year old boy, who's the only deaf boy around and is excited that his sister is going to be joining him in that, on that plane, that someone who would now as, as an adult, someone who had really spent most of his time around other deaf people, kind of for the first time being around so many other deaf blind people and really having that visceral feeling of community in being in the presence of so many other people. And then that like really, um, a defining moment of quitting your job with a deaf school and joining on with a deaf blind organization is really, uh, really, um, encapsulates that transition. It really, really highlights that moment of transition for you. That's so interesting. And you know, you were just talking about some of the differences between the communities, a couple other just quick follow up questions with the last few minutes we have here going a little bit over, but, um, I just want to, um, I just want to, uh, ask you about, um, what, what if, uh, as someone who obviously felt, um, associated with the deaf community for, you know, one part of your life and then maybe more so with the deaf blind community and this next chapter of your life, do you feel like you, you were, you can uniquely connect with both communities having really felt like you were a part of both at one point in your life. How would you speak to that?
[Chris]: Yeah. I consider myself a member of two minority cultures Or two minority groups. Some people think I am, I'm a member of the deaf community and deaf blind community is just a subset of that, but that's not the case. I am firmly a member of the deaf community. So the deaf community kind of found its way into my heart from when I was very young. And as I got older, the deaf blind culture also snuck its way in there. So I feel like I'm a very two distinct cultural minority groups and there's a word that's pretty common now, intersectionality that's assigned for it. I think, I think I'm not sure. Um, but intersectionality is that they're basically, there's many layers to somebody's identity. We're all, not just one thing. You know, we have cultures on top of cultures on top of cultures and identities on top of identities. And that makes us who we are. So when I'm with deaf blind people, or when I found out that I was deaf blind and I started embracing that identity more, it kind of added a new cultural identity to myself. So in that way, I'm kind of a multicultural person, I guess, if you want to say that, um, I do have a very, very strong connections still with the deaf community. I have so many friends in the deaf community. I didn't cut ties with them or anything like that. We're still as close as we ever were. I still feel like a tremendous part of that community, but it has lessened a little bit as my focus has become the deaf blind community. My connection to the deaf blind community is still relatively new. It's really only been since 2008 since I met those, those fellow people with syndromic alley that, um, so because I've been a part of the community at large, only since about 2008, my deaf blind identity is still relatively new. So I definitely feel a strong connection to both. Um, there's not, they're not mutually exclusive.
[Doug]: So with the last one minute here that we have the remaining one minute, we have a question from Barbara, my aunt, hello, Barbara. She asks, why is the deaf blind community so much more diverse than the deaf community? I know you started to go into that, but maybe with the last minute here, if you could just talk a little bit more about that.
[Chris]: That's a fantastic question. I'm actually thrilled that you asked that Barbara. So how somebody arrives at being deaf blind is so varied. So my story is one of many, like I was born deaf and became blind. As I got older, a lot of people with ostracism have similar experience to that. Some people are born deaf and blind from birth. Like people with charge syndrome, um, or a couple of other syndromes like that are born deaf and blind from birth. Some people are born blind. They lose their hearing as they get older. Some people are born with hearing and with sight and then something, they have a trauma, an accident or disease, severe illness that caused them to lose both senses. Some become deaf blind as they become older, senior citizens lose their sight and their hearing. So there's a multitude of ways that somebody arrives at deafness and blindness. So that's why the community is so diverse. There's not one typical deaf blind person where there's not one typical path into how somebody becomes deaf blind. Mine is just one of hundreds of ways that that can happen. So that's why our community is so diverse because people are coming from all different situations,
[Doug]: Beautifully put Chris. And certainly there's so much more we can talk about, um, that concludes our time for today, but you'll definitely be back on against you. And I know there's many other topics that we'll have to discuss in the future. Um, thank you to everyone who's tuning in. Uh, thank you to our interpreters as always Erin and Liz for signing and Jamie for voicing throughout this and a reminder to all of you watching. We now have this wonderful group of people that are watching on Facebook, alongside people who are watching on YouTube during these lives. I would encourage you if you aren't subscribed yet to our YouTube channel, you can go over to that by going to youtube.com/feelingthrough and there's stuff that will exclusively be on our YouTube channel at certain points in the future. These lives will always be on both, but there'll be some other stuff that will exclusively be over there. So if you're not already subscribed there and anyone who's joining us on YouTube, I encourage you to also follow us on Facebook. Cause there are certain announcements and such about other things that we're doing that you'll find there. So go to our Facebook page and follow like us there. If you're not doing that already. And one more reminder, we're still celebrating deaf blind awareness week, which goes through Saturday. Again, I posted up a link to our store. So if you want to celebrate by buying some really cool Feeling Through merchandise, we've got really awesome. T-shirts up there, sweatshirts, mugs, a tote bag, really cool stuff. Some really cool designs we worked on for a while and it'll go directly to supporting our partners, Helen Keller Services, as well as future Feeling Through Experiences and endeavors. Once again, uh, thank you so much, Chris, for joining us and thank you for everyone who tuned in and as always, we will be back next week. Same time, same place for Feeling Through Live. Have an amazing weekend and we will catch you soon. Bye.