Taking the Lead | At Least I'm Not Blind

On this episode we talk with Jill Gaus is a Leader Dog client and board member. She is a licensed nurse, educator and longtime advocate for individuals who are DeafBlind. 

What is Taking the Lead ?

Leader Dogs for the Blind empowers people who are blind or visually impaired with the tools for safe and independent daily travel. Our goal is to educate, advocate, and share real life experiences of those with blindness. Come learn, laugh, and grow with us.

Christina: [00:00:00] Welcome to the Taking the Lead podcast where we empower people to be unstoppable. I'm Christina Hoeppner with my co-host, Leslie Hoskins and Timothy Kunow. It is an important month this month. It is Blindness Awareness Month, um, month of October. We do a lot of things around it, and I know Leslie, in years past, we've done.
Something special, so I'll let you talk about that.
Leslie: Yeah. Well, in Blindness Awareness month is uh, national White Cane Day, so we celebrate the cane, which you all know I love to talk about is the long white cane. But one special event that we do along with white Cane day is Cane Quest. And so I think we talked about it a little bit before, but Cane Quest is coming up here in just a few short weeks and we will be welcoming, um, Michigan students really from all over Michigan to come compete in a Kane competition.
Uh, it's super fun, really, and ultimately they're kind of competing against themselves. Their scores from last [00:01:00] year. We want them to up. That. And it's a great way to motivate students to get out there and work with their orientation and mobility specialists and build those cane skills. Um, so we're really looking forward to that along with many other events that'll be taking place throughout the month.
Timothy, I'm assuming you're gonna do something really exciting to celebrate? Yeah. Uh, white Cane Day and Vines Awareness month.
Timothy: I guess for the cane day, I'll just, uh, leave Glacier at home and use my cane all day.
Christina: There you go.
Timothy: How's that?
Christina: Hey, I'll take it. Yeah. Leslie will be very happy with that.
Timothy: Well, I imagine so, so I, I will do that and I'll even take a picture, Leslie, and send it to you.
Leslie: I will greatly appreciate that. It is kind of, I'm thinking I'm getting a reputation around campus. Somebody says something good about a guide dog, and immediately people are like, but I like my cane too. And I
like
Leslie: it's, I, I know. No, dogs are great. I love them
Christina: too. It is funny when I do client interviews, so we do client interviews like.
Their second week that they are on campus. And there are times when they'll be like, [00:02:00] yeah, like the cane, but don't tell us Lee. Like, they'll say something that about how the cane wasn't as good as their dog or something. They didn't like it as much. It's so funny. Um, so I'm always like, well. She has a reputation.
I know. I've got people a little worried.
Timothy: She's sitting in the corner frowning. Yes. You talk about a dog.
Leslie: I did have a client send me a shirt that said Cane Queen on it, and it is one of my most prized possessions. Oh, there you. There you go. I did not know this. Yeah, it's not in our office. No, I keep it at home.
Very special. Very special to me. Um, another recent thing though, to celebrate this month, I did just purchase the new Mattel Barbie, um, who has the cane? And so I got that in the mail and I'm pretty excited to put that up. I did have to hide it from my daughter, um, but I want it to be in my office 'cause I'm so excited about it.
Yeah, I saw it at Target.
Christina: Yeah. And it actually was almost all sold out, which was [00:03:00] really great to see. That there was like one left. Yeah. I wanted to buy it, but then I was like, I don't wanna take that from a child. I, I, okay, well we want it. This is awkward. 'cause I did It sounds like you ordered yours online though.
I did. So I, that, that is my plan. I need to go online and do that.
Leslie: I am pretty excited about it. And I did see a client's, um, Facebook posts already about representation and how it matters and how. She is feeling so good about seeing herself right. In Barbie. Yeah. And I just thought, you know what, it is so important and so cool and I do wanna Yeah.
Boost sales and encourage it. So yeah, I'm pretty pumped about it.
Christina: Yeah, there's been, um, some really cool videos out there I've seen of like little girls opening their Barbie for the first time who have vision loss. There's a couple out there and I can't even remember where I saw them, but really emotional videos to watch and cool to see.
Leslie: That was in partnership with a FB, so fantastic job. And we've had, uh, the president of a FB on this podcast. So we're [00:04:00] huge supporters and our, uh, president and CEO sits on their board. So just really exciting to, to support that. And overall, it's gonna be a great month. Lots of things to do, lots of things to look forward to.
Timothy: And cooler weather
Leslie: and yeah, you get excited about that in Georgia. US In Michigan, and we're like snow.
Alright, well we are very excited because today's guest is someone who we've been very excited to talk to on this podcast and waited quite some
Christina: time. Yes. Jill Goss is a leader, dog, client and board member. She's a licensed nurse educator and longtime advocate for individuals who are deaf blind.
Timothy: Jill, we're excited that you're here this morning.
So do you mind telling us a little bit more about yourself?
Jill: If I tell you everything that I have done, we will be here at least a week. But anyways, in 1997, Michigan commissioned for the blind. At that time, put on a camp for deaf blind adults, and [00:05:00] I was like, Nope, I'm not deaf flying. So with my husband, he's like, you gotta go.
I said, fine. So that's when I met a totally deaf, totally blind man who had his PhD and I thought, wow, if he can do it, I can do it. So we started a Michigan organization for deaf blind adults, and then things kind of progressed from there. While I was at this camp in Brooklyn, Michigan, I met three different people that had a leader dog.
I'm like, oh, I had my cane. Sorry, last, oh, I used, but I used my cane and it, it was amazing. It really was. But so the first time, um, I really met a deaf line person with a leader dog. I was just like, you know what? I need to learn time, language. And then I realized, you know, wait a minute, I'm missing out on a lot.
So that was great. So then I kind of went into what a a DB, American [00:06:00] Association for the Deaf Blind and that, um, all of United States and I became president. I was on that board for 13 years. And then from then on, my life just kind of went forward as far as wow, deaf blind people, we really need to advocate.
One of the things that I did, um, I was an oncology nurse and then when my vision started really going, then I decided to just volunteer for hospice. So, um, that meant a lot to me and I was able to be with people that wanted to stay home. Um, so that was amazing. And then, um, for the last, I can't believe it's been this long, 24 years, I work with DB Central Airplane Central.
They are federally funded through the Michigan, or I'm sorry, the educational department. Um, and we provide resources and connect families with different kinds of [00:07:00] vision losses with their children from birth all the way to 26 years old. And I consult with them and I, I love that job so I can meet little babies that are deafblind or young adults that are deafblind.
I talk to parents and. I also teach at OCC, um, Oakland Community College and Deaf Line Interpreting. And one of the things I love about that at one of our classes actually goes to Leader Dog and actually get a tour. Um, I. And find out what Leader Dog is all about. And so one of my students, Beth Dokey, now Wicks at Leader Dog, so I'm, I'm really happy about that.
Yeah, so I mean, I could go on and on, but I think maybe we should stop there.
Leslie: I mean that is a lot. What don't you do? I might, it might have been an easier question or what you haven't been involved with, but I do wanna start out a little bit here. Can you tell us who you have in the room with you here today and what
Jill: their roles [00:08:00] are? Yes, I can do that. I have Stacy Naik, and she's a nationally certified interpreter and also what we call in Michigan deaf blind Doors.
And so she is working with me with tactile a SL, which means that I am actually holding onto her hand and she is signing into my hand. And then behind me I have Sarah Dike, I, the one from Leader Dog that I absolutely love. And um, she is doing what's called haptics on my back. And some people may call that tactile.
So I can't see. So if somebody's smiling or nodding their head or something like that, I get that environmental, um, feedback on my back. So if Christina's talking, then you know, she does the see on my back, and then if she's shaking her head or whatever, that way I know what's going on in the room and not find out later.
So it's very empowering. Very [00:09:00] empowering.
Leslie: It's so important that information, and it's something that's. Kind of newly come along, is that correct? This is, I mean, haptics I'm sure has been around, but it, it's starting to be more encouraged, right? So that you know what's going on in the room.
Jill: Yes. Well, haptics been around in Europe.
Mm-Hmm. For decades. They used to do this with deaf blind babies, and then the adults were kinda like, oh, wait a minute. We think we kinda like this. And then now at the haptic, it's kind of turning into the pro tactile and yes, it, it's becoming a language for the deaf blind community all over the world. So yeah.
That's really cool.
Christina: That is such an important way for you to know what's happening, especially here in the podcast studio where we have a lot going on as well. And what are some of the most important things that you would say that people need to know about communicating with someone who is deaf blind?
Jill: Well, it's always it. This is a big joke in the deaf blind community. We all love Helen Keller, right? But we [00:10:00] are not Helen Keller's. And when people are like, really? I do say, well, she was my cousin. Sorry, I'm, I'm kidding. She wasn't my cousin. But, um, the biggest thing is don't be afraid of us. Come up and, you know, all deaf flying people can communicate or see or whatever in many, many different ways.
And they're like, we don't know how to approach you. We don't know how to talk to you. We don't know how to do that. Well come up and give it a try. And we go from there. And that's what I work with a lot of the youth. And you know, the parents are like, we don't know what to do. Just tell 'em, tell 'em the truth, and say, this is the way it is.
And, you know, that's, that's what it is.
Leslie: I think one thing that people don't understand, and we talk about this with blindness, is that everything's on a spectrum. So somebody who is deaf blind, most likely in some cases, not always has some remaining vision and or hearing. Um, and that's something to consider and keep in mind, and that, like Jill just [00:11:00] said, said, asked, asked the person because they're each gonna want something a little bit different.
Timothy: So Jill, I can imagine there's a lot of challenges and barriers. Can you give us some examples of that?
Jill: Well, um, you know, I was born deaf and we, my older brother also, and we just ended up mainstreaming. And then when found out, we always said, well, we also thankful we're not going blind, but oh, guess what?
My brother and I are blind, um, deaf blind. But anyway, some of the barriers are. The biggest thing is like last, what you're saying is communication. Um, people just don't know how to communicate with us or they don't talk to us directly. So if I have an interpreter with me, or even my husband or a friend, people just wanna talk directly to them and I'm like, hello.
You know, I mean, I'm here. You can talk to me. Well, it's like you can't see and you can't hear well, hello? But then they [00:12:00] see me with my leader dog and they're like, oh, you must be in training. No, I'm definitely, no, you're not. You're normal. Well, and then I say, okay, so what is normal? You know, she's like. I was just normal that they can come.
But if you ask some other people probably say Uhuh, not Jill. So I mean, some of the barriers are that, um, and a lot of deaf blame people are really isolated because they just don't know how to reach out or who to contact. And that's one of my goals is to try to reach out to these deaf blind people that are isolated and lonely and say, Hey, come on, come on.
You know, there's stuff we can do, places we can go. That kind of stuff. So.
Christina: Jill, I know you mentioned that you have a leader dog and you came to our campus for, uh, the Deafblind program. Could you tell us a little bit about what it was like to go through that program and about your leader dog?
Jill: Well, when I decided in 1999 that I wanted a leader dog, I did apply for the [00:13:00] deaf-Blind program.
And I knew Keith McGregor, who was in charge of that before I got my leader dog. He was taking a sign language class and I went and did a presentation and he came up and said, you need a leader dog. And I'm like, okay, who are you? And it, it's a joke, but with him and I, but anyway, so he, he said there was a three year waiting list.
So my first dog, Heidi. I did go into what they called like a regular classroom. Um, and there were a couple of other, um, people there that had a hearing loss. But Keith came and checked on me and my instructor at that time was Art Fleming, and he and I just worked out signals because he was concerned about having an interpreter at that time.
Confusing. Heidi, my second dog, Asher, was the biggest. Most beautiful, gorgeous golden retriever, and he was a golden retriever. Let's say he was exuberant. I, I'm very short. I'm only four [00:14:00] 10, and Ashley was like seven feet long. So anyways, um, Keith and Jenny Sanderson, Keith McGregor, we did a home delivery.
They wanted to try the home delivery and so that was good. Um. But then when I lost Asher, it was kind of like, well, let's see. Um, no, I'm not getting another one. So I got a text from Jenny and Keith, how you doing? And I said, not good. I'm sad, I'm lonely. Sorry, Leslie, I gotta use the cane again. So, um, I did get, um, a little bit of training on my cane.
And so then. I got a text and I said, well, we could fly you to Naples, we might have your dog. And I'm like, oh, hmm, oh hmm. And this was in February. It was ice and snow and it was freezing. So I said, okay, why not? So Jenny and Sarah, um, between the two of them, there was two of us that were deaf blind in Naples, out of [00:15:00] a group of us.
And um, they were. More one-on-one with us. And, um, they know how to communicate with a SL. And learning the haptics and, and that kind of stuff.
Leslie: Yeah. And success ever since, which has been fantastic. It is so interesting that you got to do that Naples class because that was kind of a unique opportunity that we were doing for a couple years there where it was what we called warm weather training, basically, who wants to come to Michigan in February?
It is snowy and it is icy. Um, and it didn't make sense for everybody to. Come to the Michigan class. So we kind of did that, uh, Florida class, which was really great and I'm glad you were able to be a part of that.
Jill: So it was awesome because really with me living in Michigan with Heidi and Ashley, that was the best thing I could have done because I was always in that winter class.
But then when I went to Naples, it was just like, oh. So it was all like a whole new experience for me because of the warm weather training. So [00:16:00] I learned a lot by doing the warm weather training also. So that was really cool. Yeah.
Timothy: So Jill, um, me being visually impaired, I see how difficult it is to cross the street.
I can only imagine. What's it like with somebody who's deaf and blind? Can you describe how you do that? 'cause that fascinates me.
Jill: Yes. Typically what we can do, I do voice for myself, but there are a lot of deaf blind that do not voice. They just rely on the a SL and they may have a sign that says, um, I am deaf blind.
Please help me across the street and kind of hold it up. Or if I'm by myself and I will, I will say, is anybody here? Is anybody around me? And most of the time somebody will put their, their hand on my shoulder or something. And I, I just tell 'em, can I please get some help crossing the street? And of course, you know, anybody with a cane and yes, Leslie, I will say anybody with a cane and, [00:17:00] and of course with the dog, um, people are very, very helpful.
So that's how, that's one of the ways that I'll just say, is anybody around here, can they please help me cross the street? And sometimes people will even say, well, can't they see the light? And I'm like, no, the dog can't, they can't tell colors. But, um, but yes, that's how, that's how we do it.
Leslie: Many people who are deaf, blind, or consider themselves hard of hearing those crossing cards is typically what we call that in the o and m world can put their own language on it, right?
Because everybody identifies themselves a little bit different, and then they can also say on the card how they want to receive that help. So maybe it's a, a tap on my left shoulder if you can assist me or tap on my right shoulder when it. Safe to cross. However they wanna communicate and work together, and we have seen a lot of success with those cards.
Another thing that some people choose to use is the, um, accessible pedestrian signals. A PS, sometimes they're vibrate, tactile, so you can press and hold those buttons and they'll actually vibrate when it [00:18:00] is the appropriate time to cross. So. It's, I think technology has come so far and we're using so many different techniques that people who are deaf-blind can absolutely cross streets independently in whatever technique that they wish to use, um, which is very, very cool.
Uh, another thing that I wanna be sure that we talk about, and you mentioned briefly is kind of your role in education and you're teaching the deaf-blind interpreting classes, but you've also done some education on the Leader Dog campus. Can you tell us a little bit about that?
Jill: Yes, I can. Leader Dog has always been, you know, a special, special place in my heart, especially with everything that has been done over the years.
And, um, so one of the things is I have been coming in and Sarah's been helping, is to teach Leader, dog staff some of the haptics. Um, how to do, you know, and they're actually in the blindfold and it's like, okay, so if you are with a deaf-blind person, or for some reason you need to work with a deaf blind [00:19:00] person and you don't have an interpreter, these are some different ways that you can try to communicate with them.
Yeah, being on the Leader Dog board has been absolutely amazing. And now. More than ever. Um, a lot of teaching with, it doesn't matter what the disability is. Um, I don't know if I wanna call it a disability because. We are able to do what we can with what we have kind of thing. So yes. Um, and I also have my OCC class, like I said, come in and some are even volunteering, uh, for Leader Dog.
And some are even coming in to be what's called SSP support service providers. So like if, um, the downtime for the deaf line person, like over the weekend and they can't go home. Then an SP will come in and maybe take the deaf blind person out to lunch or maybe go shopping or something like that.
Leslie: I was fortunate to sit in, in one of those haptic classes that you did for the Leader Dog team members, and I think it is so important and it was so [00:20:00] beneficial.
I heard from many team members, including our residential assistants, so the RAs and the kitchen team, people who don't have the, you know, the A SL. Skills and they now can communicate with some of our clients who are here during those deaf-blind classes and help even in like in a case of emergency or explaining a little bit what's happening in the dining room or be able to tell somebody, hold on, let me go find somebody who can help us, you know, communicate.
And it's been really, really great. It also is a very good experience just to. Build some empathy and understanding right, of what our clients are going through. And so I absolutely loved it and really appreciate that you took the time to come and do that and are continuing to do that. Can you tell us a little bit more about, you said being on the board and you know, what that's meant to you and so the, the impact that you've had already.
Jill: Yes, I can tell you that Leader Dog had always been a dream board for me. So I said, I told my husband if I ever, [00:21:00] ever quit all, everything that I'm doing, I will not say no to Leader Dog. But, um, it had been a learning experience even for the board members and, um. Because, you know, people would talk and we'd have, you know, during our meetings, maybe somebody would be calling in on the phone or maybe a, uh, teams zoom, whatever.
But it's like, wait, wait, wait, wait, wait. Who? Who's talking? I. And so now it, I guess that's what they looked like, Jill, you go, because it was just like people need to say their names before they speak. So that, and then some of the board members were like, yeah, that would be nice because there's so many of us.
And um, and I just think it's really opened doors with me being on the board. I'm also on the Governor's Committee, and it's just really made people realize on the board and some of the staff, it's like, wow, wait. Yes, we need to step back and we really need to think about some of this, of what we're doing.
Um, and again, I just, and [00:22:00] it's so. It's positive. Everybody is just so positive and upbeat. And if there is a problem that comes up, we try to work it out, whether it, it depend on what the situation is. So, and I love it 'cause everybody does communicate with each other.
Leslie: I. And it's bringing accessibility awareness to our organization.
We've been really pushing accessibility and it needs to be at all levels in every meeting, at every event, at every function. And so that's a great reminder for our board especially and team members. And what we're trying to encourage is pushing that out, right? So any event we have, making sure that we're meeting all accessibility needs, um, any meeting that we're having, whether or not somebody on the meeting needs that, you know, it's just, it's a good practice and it's good for us to push Asa.
I know that that is exciting for our board to have you there.
Christina: Yeah. And Jill, I wanna circle back a little bit to the education and the teaching that you do for anyone who, um, you know, can't make [00:23:00] it to one of your classes. Are there other ways for them to learn haptics or to learn sign language? I know that would be, you know, not only for someone who's deaf blind, but if someone wants to better communicate with people, are there other avenues for them to learn?
Jill: Well, I, you know, I don't know. I could, depends on the location of where they live and, um, I know there are some things online. I couldn't tell you right off the top of my head like resources. But, um, the haptic part, there's nothing really out there that you can learn from the haptic. There is a book that Izzy, she was the leader dog, um, client also.
Her and I just put together a very basic book of basic haptics. We think there's 103 signals and we're thinking, oh geez. So we have like 46 and in that book, and we're happy to share that with anybody that wants it. Um, there is pro tactile and um, through Oregon State University. [00:24:00] I know that they have a webinar and you can sign up for that.
Uh, and that's free. That is free, and that will cover a lot of the pro tactile, um, you know, teaching that needs to be done. But as far as sign language, it just try to find somebody in the community. Some churches do sign language. It just depends on the situation and where they live.
Leslie: And we do have several team members who know American Sign Language, a SL and then have, you know, adopted and learned the haptics.
Is there a difference between haptics and pro tactile?
Jill: The pro tactile, um, I am still trying to learn more of the pro tactile. They are saying that haptic is underneath it. Pro tactile is like a philosophy of the independence of a deaf blind person. Haptic is just kind of telling us what's going on in the environment.
So pro tactile is more of the independence and what a depth line can do. But um, like I said, haptic is just, it's touch. It's [00:25:00] all, it's all about the touch.
Leslie: That's so interesting and I think it's great for people to know what is available too. 'cause some people probably who are deaf-blind, maybe have never experienced haptics or pro tactile.
So educating and sharing that as a resource and that that's available and the impact it has on, I'm sure your experience is huge.
Jill: Well. I did chair, um, the Helen Keller National Center out of New York. I chaired their, um, consumers advisory board and, um, and I, I know the deaf blind people that were there.
I'm really good friends with some of 'em, and I'm like, what are they doing over there? And so I had an interpreter from Michigan with me and she, because, and we're like, oh, and I, I said, they're touching each other and people are like spot on and just answering stuff right away and laughing when the laughter is happening.
And that's when I found out about haptics. So then, um, Helen Keller National Centers, um, flew in a group from Norway that [00:26:00] started to come up with a very specific adult haptic, and I was part of that training and it was really cool. And so that's how I learned it, because I was like, what are they doing?
But, and then when I found out, I'm like, I want that. I want to learn that.
Timothy: So Jill, what was it like when you got your first leader dog? When you came to Leader Dog for your first dog? How did that open up your life?
Jill: Well, when I came I thought, oh my gosh, I'm in prison. They're telling me when to eat.
They're telling me I had to sit in the same seat and for every meal, and they told me I had to get up at this time and go to bed at this time. And I'm like. All righty, I can do that. So, um, but once I did get Heidi, um, and like I said, art was an amazing, every, all the instructors are amazing, but he was like, the Marines.
And I'm like, yes, sir. But, um, when I actually went out into the real world, [00:27:00] I was just like, oh my goodness, my, you know, I just really felt like my self-esteem and. It just was really coming back and my confidence to actually get around and I just, I didn't have to hang on to people all the time and. So, and that was one of the things, some of my friends and my family, especially my husband, really, I said, no, I, I'm, I, I love you, but I don't need you.
You know, kind of. But, um, it would just really open doors for me, and I really feel like with my first leader dog, I wouldn't be doing the things that I'm doing now, presenting and teaching, because like I said, it's just, it was so empowering and my self esteem came back and it just, it was amazing.
Absolutely amazing.
Christina: And Jill, you've really immerse yourself and you do so much. What advice would you give to someone who may be getting that diagnosis now that they are going deaf, blind and don't know where, what to do or where to start?
Jill: What I tell them, and I have met some children and [00:28:00] adult that are becoming deaf blind, and I just tell 'em, it's not the end of the world.
You know, we're not losing our, our mind, our, our heart and our soul. And we still can function maybe differently in the world of other people, but we still are human and we still can be loved. And typically, um, I do recommend Leader Dog. And even a parent, um, of a deaf blind child, and we, um, they even will reach out to Leader Dog and say, oh wow, there are a lot of resources.
And then I kind of keep up with them just to kind of make sure that they're okay. And I said, if you don't want a dog, you don't have to get a dog. But they do cane training also, you know, and you have your stomach programs and all the technology and everything. So there are resources out there. But I always refer them to Leader Dog and if Leader Dog doesn't know, then I feel like that they turn around and [00:29:00] maybe can refer somebody or connect them with somebody.
Leslie: Absolutely. We always say that to anybody. If we're the first phone call, that's fantastic. If we can't help, we will always send additional resources or refer to somebody else because we don't want it to be the end of the cycle. Um, and that's what we encourage everybody to do. So thank you Jill. We want to thank you for taking the time to join us today.
This has been absolutely fantastic. Um, and we are so happy that you were able to join us.
Jill: Thank you for inviting me and I know you guys were trying for a really long time, but I always love being around Leader Dog staff. Oh wait, I should say leader. We're starting now to call it leader because now we have the cane and the dog.
Yes,
Leslie: we do. We have a lot going on at Leader, which has been, uh, fantastic. But thank you and thank you so much to our listeners for listening to the Taking the Lead podcast. I'm Leslie Hoskins with host Timothy Kyo and Christina Hepner. We hope you enjoyed learning [00:30:00] about Jill and all of the incredible work she is doing.
Please join us next time as we continue to dive into the world of blindness.
Christina: And if you'd like to learn more about applying to our free services at Leader Dog, you can head to leader dog.org or call us at [phone]. Don't forget you can reach us at taking the [e-mail] with any questions or ideas.
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