December 7, 2020 – DeafBlind and Living the Lives They Want Transcript

ANIL: All right, welcome to the Nation's Blind Podcast. This is Anil Lewis, and I know you guys just can't wait to hear from Melissa, but you're going to have to wait a little longer, because today, joining me and emceeing this wonderful show is the original voice of the Nation's Blind Podcast, Mr. Chris Danielsen. How are you, Chris?

CHRIS: Hey, Anil, great to be here with you. The second string! But --

ANIL: Good thing we have a very deep bench.

(Laughter.)

 

CHRIS: Exactly, well, I appreciate that. So, great to be here with you. We have an interview today that I really think is going to cause a paradigm shift in the thinking of a lot of our listeners.

ANIL: Yeah. I would be curious, what do you guys think when you hear the term "deafblind?" I mean, we as the National Federation of the Blind hopefully have educated you that blindness and sight is not necessary for success, and blindness can be reduced to a mere nuisance, it's just one of those characteristics, but what if we tell you about being deafblind? What does that take to your mind?

Hopefully this interview will reshape whatever you're thinking!

CHRIS: Exactly.

ANIL: We have two dynamic individuals today that represent our Deafblind Division.

CHRIS: That's right. We have both the president and the first vice president of our Deafblind Division, and these are both women that you're going to want to get to know. They are mothers, they are --

ANIL: Yup.

CHRIS: They are engaged in their communities.

ANIL: Yup.

CHRIS: They have hobbies. They are living the lives they want, but as people who are deafblind, not just blind. But it's --

ANIL: Oh, very nice, I see what you did there!

CHRIS: Yeah --

ANIL: That was a nice little coin of a phrase.

CHRIS: I appreciate that.

ANIL: Melissa, you better watch out, he's competing for your spot.

CHRIS: No, I'd never compete with Melissa.

ANIL: Because you'd have to take the mic out of her cold dead hands.

(Laughter.)

CHRIS: Yeah, we don't want to go there!

But this is really informative, and I think, without further ado, we can get to it, because I just feel like, you know, like we had said we were going to do, we want to talk about the different populations that are within our movement, and so this is an introduction to an important part of our movement.

ANIL: Yeah, really good interview.

CHRIS: Right. Yeah, I think this will be a really educational experience. It has been for us, and it will be for everybody, so let's listen to the interview.

ANIL: All right. I'm really pleased to have our guests today on the Nation's Blind Podcast, we all know that the National Federation of the Blind knows that blindness is not the characteristic that defines you or your future. These young ladies are going to tell us that deafblindness is also not the characteristic that defines you or your future, and that you can live the lives you want. Deafblindness is not what holds you back. We have Alice Eaddy and Marsha Drenth with our Deafblind Division here to join us. Ladies, welcome, glad you to make it.

ALICE: Thank you.

MARSHA: Thank you.

ANIL: I think what would be helpful for our listeners is, let's let them get to know you a little bit. Alice, as the president of the Deafblind Division, I'll yield to you. Can you tell us your story, how you identify as a deafblind member of the National Federation of the Blind?

ALICE: Well, myself, I was born deafblind, premature, with lots of other disabilities that came with it, so that I wasn't actually diagnosed officially until after... hmm, about eight months. And it has progressed. So I have both dual hearing and vision loss, but it has continually progressed. I'm in fact soon to be implanted in my right ear. But what happened in my youth was that I was fortunate that my father -- my mother passed away immediately after I was born due to complications of all kinds of things, and so I was raised mostly by my father with a brother, and he was not American-born himself, and he raised us with the understanding that we had to always have our best foot forward, and we had to accomplish things, whether we liked it or not. I also happened to be the only female in the family, so that meant the female duties of the house fell to me, whether I knew how to do them or not.

(Anil and Chris laughing).

And he didn't care. He was also military, so he did everything in that fashion. It didn't matter how long it took to do something. It also, you know, he actually did inspections and all that kind of stuff. So he went out of town, he came back, he was ready for inspection, you knew that quarter better bounce off that bed, because he would wake you up if it didn't.

(Laughter.)

But he also knew that education was the key. My father insisted that I learn to speak well, and if it took all evening over the course of a meal for me to ask for something and to make sure that people understood what I wanted, that's the way he did it. We can wait. If it took all night, he didn't care. So I was fortunate that speech was very important for him. He was also multilingual -- I'm not -- but my children are.

As far as being Deafblind, the most important thing is having the work ethic. I am a college graduate. I have a bachelor's in elementary education, developmental disabilities, coordinate major in psychology, sociology, reading theory. I've run reading labs before. I'm also a certified office administrator. Lots of other things.

And so right now, I'm doing, under COVID conditions, probably, I guess, part time would be the best way to explain what I do. I'm a mentor in what we call an EDGE program, a program developed by CBVI in my state, and it includes employment, development, guidance, and enrichment for youths 14 to 21, and that includes transition skills, it includes cooking, prep for college, prep for employment, all kinds of things like that. So that's the other thing that I do.

I'm also a certified advocate through Helen Keller National Center, as well as independently.

CHRIS: And you're an athlete as well. Is that correct? 

ALICE: Yes, Paralympian. Well, I'm certified, and I have, I guess, the Paralympic body created a webpage for me, so I'm posted up there, and the scores I created in 2017 are still holding. I'm a senior, but I compete in everything. All track and field events. I did try the long jump, but it's not one that I do competitively, only for invitational purposes, because the invitational is kind of like -- it's almost like a social gathering, everybody gets to see each other, and we also connect with a lot of the younger kids that participate in the invitational, because it's basically designed around young children, wheelchair racing and all those kinds of things. So I get to -- we all get to hang out, some of the kids that we've seen in the last four years, some of them wait for us to show up, because we, you know, we'll share space with them, we, you know, have hug sessions, we kind of mentor them without mentoring them. But I'm the only deafblind participant in any of the events that I go to.

ANIL: Hm.

Thank you, I appreciate that. That was enlightening. I mean, I've known you for a while, but that really shared some things I hadn't known about you.

Marsha, we'll yield to you to hear your story.

MARSHA: Thank you, Anil. Unlike Alice, I was born visually impaired. I come from a long line of family who has been involved in the Federation since 1952, when the Texas affiliate was formed.

ANIL: Oh, wow.

MARSHA: I have a condition called aniridia, which also comes with a lot of other eye conditions, for example, cataracts, detached retinas, and so on. Only until 2007 was I visually impaired, and lost my vision in 2004. I was the type of blind person that always really appreciated my hearing. I loved music, I loved being able to hear, I would sit and listen to people talk! I loved language. I loved going to concerts.

ANIL: Hmm.

MARSHA: And in 2007, I had an orientation and mobility instructor who began to notice that I got lost in familiar areas. At the time, I was a student in the local community college, and this was unusual for me. And she suggested I go and get a hearing test. I went, and I was told that I had a moderate to mild hearing loss, and I didn't wear hearing aids for a long time.

Fast forward. I moved to Baltimore. I then met my husband at the 2009 youth slam. I still didn't wear hearing aids. I was in complete denial that I had a hearing loss. I didn't want anything to do with those things you stick in your ears that made sounds.

(Anil laughing).

Weird, and made my ears sweaty. And just changed the way I heard things. As a blind person, you know, you're taught to use your hearing all the time.

ANIL: Yeah.

MARSHA: For traffic, cooking, and everything. That's what I was comfortable with. And then, in 2011 and 2012, as a student at Temple University pursuing my social work degree, I began to no longer be able to hear the person sitting next to me, or the professor up at the front of the room, even with the most powerful amplification. And so I begrudgingly took out those hearing aids, put them in, but unfortunately they weren't strong enough. At that point in my life, I decided to take off a year. I didn't like that fact. I attended the Helen Keller National Center, because again, I grew up in a family that already had lots of blindness skills. I knew how to cook. I knew how to use a cane. I began using a cane at 5 years old! I knew how to read braille.

So I needed skills on how to learn to live as a deafblind person. I went to Helen Keller for 9 months, where I learned to use sign language, and learned how I would be a social worker and adapt my life as now a hard of hearing blind person. I consider myself to be deafblind. My hearing loss is severe to profound. I wear two of the most powerful hearing aids on the market, and there's a lot I do to compensate for my hearing. No longer do I use my hearing for travel. That's probably very scary for a lot of people, but I don't because I have other tools in my toolbox that I use. I'm currently working as an access technology instructor in Philadelphia, where I'm very active in the Deafblind Division in my state affiliate here in Pennsylvania, I'm the mom of three adult children, and, yeah, I love to crochet, shop, and do all kinds of things.

CHRIS: Fantastic. And you're the first vice president of the Deafblind Division, is that correct? 

MARSHA: Yes, that is correct.

CHRIS: I didn't mean to interrupt you. Was there something else you wanted to say in conclusion?

MARSHA: So, I'm also the president of the Pennsylvania Deafblind affiliate division. I've been a long time guide dog user. I'm kind of at the middle, at this time, between dogs, but, yes. I'm very involved and will continue to be involved. I'm an advocate for deafblindness, and anything to do with accommodations.

You know, again, I can't say it enough, but I was a person who was blind. I'm now deafblind, and if there's anything that I want folks to hear about this podcast is that it's okay to be deafblind. It's okay to have a hearing loss. And it's just as respectable to be blind as it is to be deafblind.

ANIL: That's a really good segue to the other topic we'd really like to drill down. I appreciate you guys sharing that you're living the life you want. That's what we do as an organization. One way that we help individuals with specific characteristics is we form our divisions, and we have a Deafblind Division, again, Alice is president and Marsha is first vice president. Can you tell our listeners some of the things that the Deafblind Division is working on, some of the initiatives? I really applaud the fact that the lives that you guys have lives are exemplary, and I think it's always important in the work that we do for individuals to have kind of those role models that really walk the talk. So how do you use the Division in order to inspire and encourage others to still set high expectations for themselves as you both obviously have?

CHRIS: Alice, you want to go first?

ALICE: Okay. Partly, I do a lot of the e-mail answering, both in my state as well as generally speaking, because I do spend a lot of time on various boards that I sit on, and I intercede often in my own county, because I sit on the transportation advisory council at the office of aging and area agencies and several others, so that I give them input as to how to make things accommodated for me in those settings.

I'm also involved with the Disability Awareness Council in my city. We plan workshops ourselves through that. As a division person, lately, I also am involved with, in New Jersey, we have a DBCan NJ, a deafblind organization that works with, mostly we're doing how to stay connected and not depressed during COVID.

ANIL: Yes.

ALICE: So I can also be known to, let's see -- today I evaluated mask designs that were going to be used for something. I've evaluated getting ready to play bingo, whether it's songs, we did a happy hour, so these are some of the things I'll be able to extend into the division sometime when we plan convention. There will be other things that I know how to do now that I didn't then.

But the biggest part of what we do in the division is, a, to educate each other, and to bring other people, gather, create committees, to assist us in, for instance, we have a mentor program, and Marsha can tell you more on that, because she coordinates that. We have had an SSP program that was developed, and we did try creating services for us through convention a couple years back, and so there's a lot of learning in that way. But mostly, no matter what venue you find yourselves, it's always, you have to be on point, because it's our job to teach other people that, A, you know, as odd as we are, we're not nearly as odd as you think!

(Anil and Chris laughing).

And that sometimes it's just a matter of creativity. And if you ask me, or ask most of us, most of us do know what we actually need, and in my case, I'm always a work in progress, because every time I turn around, my hearing has changed, which is why I'm going for another cochlear implant. But being adaptable. That's the most important thing the Division can do, and we've been working hard to try and recreate ourselves so that we do, every convention, have workshops, but we would also hope to, at some point, develop things that we would be doing on Zoom like other groups do. So that we would actually do some training or other outside activities that can be done.

CHRIS: Nice.

ANIL: By the way, I don't know --

ALICE: I want Marsha to discuss how we do the mentoring and that part of it.

ANIL: Cool. I don't think you're odd at all. I'll just put that out there. I think you're pretty impressive. Marsha, you want to tell us a little bit about how you see your role in the Deafblind Division, and definitely would love to hear about the mentoring program.

MARSHA: Yeah, so, originally, the mentoring program came out of a conversation, exactly what we're talking about. Growing up in the NFB, I never knew anybody that outwardly admitted that they had a hearing loss.

ANIL: Mmm.

MARSHA: I never knew. They might wear hearing aids, but they never called themselves deafblind, which is okay, I'm okay with that, but they never said "I'm hard of hearing, excuse me, can you repeat yourself?" It wasn't talked about. So that's number one, what the division tries really hard to do, is just get it out there that it's okay to talk about hearing loss, so there's that education piece. I know that I've spoken at several state conventions regarding deafblindness services, accommodations, and that type of thing. So the mentoring program came out of that conversation that, that, how can we pair up people that are brand-new to the Federation so that they can then learn other -- get to know and learn about hearing loss and about things that we provide within the NFB that would help those folks that are new to hearing loss, or maybe they know they have a hearing loss, but aren't ready to take that step to getting hearing aids.

So they're paired up with somebody, hopefully within their state. There hasn't been a huge amount of interest in this program as of yet, but hopefully after this podcast, there will be! Because I think it has great potential.

ANIL: Yes, yes!

MARSHA: We also do a lot of building up in affiliates to talk to state presidents about, again, deafblindness, accommodations, how can we help folks who have both a hearing and vision loss? Can we create affiliate divisions that would, you know, again be that sort of middle man between the national office, the state affiliates, and the national division?

So the mentoring program, like Alice said, we've had SSP workshops, providing SSPs during convention, a lot of our division members are becoming very active in writing Braille Monitor articles. Because again, if we don't talk about it, folks are not going to learn.

ANIL: That's true.

MARSHA: So the division is doing a lot, obviously, a lot of that has to do with fundraising too. We do have our annual fundraisers like all divisions and affiliates. We're small, but we work hard.

There was something else I wanted to say, but I can't remember what it was right now. Maybe I'll remember at some point. But that's the division.

CHRIS: Thank you both for all that information on the division. It sounds like what you're saying is what we always say in the movement about blindness, which is, if you're experiencing blindness or vision loss, reach out and be proactive about it, and the same applies to deafblindness. I certainly hope our podcast will make more people aware, and even if they are just starting to experience hearing loss, they will reach out.

So, in the education space, because you both have done, and the division has done a lot of educating, let's talk about some of the terms we've talked about, and the importance of having certain pieces in place. For example, captioning. We've learned a lot about captioning over the last -- recently -- and we're captioning this session right now so that we can all speak to each other seamlessly.

And, so talk about what the importance of captioning and the importance of, and what an SSP is, because that was a term that I wasn't familiar with until recently, and a lot of our listeners may not be familiar with as well. Either of you can jump in.

MARSHA: Sure, I'll go ahead. So captioning provides a written transcript, so for a podcast like this, then there is written text that goes along with the spoken aural words, so captioning can be used for television, for meetings, for workshops, for Zoom, type of settings. And it provides -- for some folks, they use both the aural, auditory information, as well as the transcript. Because we're always taking in all this information, and sometimes it's best that we can listen, read, and absorb that information.

So, recently, we've done a lot of work to see which captioning method works the best, and that is 1CapApp. The 1CapApp is a feature that can be accessed on the computer or through any Apple device, and be accessed visually, or through a braille device, or listening to it with JAWS or Voice over. Again, it provides that written transcript. A person who may not necessarily be the fastest braille reader can then have access to that entire meeting without having to read a million words a minute, because obviously, we're speaking very quickly on this podcast, but, you know, you have to be a very fast braille reader to keep up with a normal conversation.

So captioning is very vital for individuals to have full and equal communication. And we've thought of some alternative ways, like providing, maybe getting a volunteer to do typing for a Deafblind individual. And so there's always -- if there's a way, there's a will to provide access to a deafblind individual.

CHRIS: And, exactly, that's great. That's really useful information, particularly about the 1CapApp, because that's something that we learned about, I know I learned about, because the Zoom captioning, for example, as good as Zoom is for many things, it isn't necessarily the best captioning solution, even though it has captioning capability. Particularly, I know my limited experience, even though I'm not Deafblind, but trying it with a braille display, it was a little frustrating. So I'm glad we've all worked together to find a solution that works better for everybody. It seems like that's what's happened.

MARSHA: Yes, that is correct, and so, you know, again, for -- originally, captioning wasn't even designed for folks who are deafblind. It was designed for folks who were Deaf or hard of hearing, and so now it's something that the Deafblind take advantage of just like anybody else can. Whether they have a disability or not.

The other term that we used is support service provider, or SSP. In some parts of the United States, the term can be "co-navigator" or "access provider".

So a support service provider is somebody who provides visual information about the environment, about what's going on, what coffee or what's on the menu, for example. Who's in the room. As a deafblind person, I can't tell voices apart, and so I need somebody to tell me who is there. Provides communication assistance. And that can come in different forms. That could come in the form of sign language or in an aural fashion.

So, also providing sighted guide. Now, that person, that support service provider, is not dragging me around!

CHRIS: Sure.

MARSHA: That person can be guiding me either verbally or by providing me with their elbow. So depending on, you know, a lot of situations, if I'm in a crowd, then I may take their elbow. If we're walking through the mall, I would prefer to have that SSP just walk next to me, just like anybody else. And I just follow along. If we're talking, and that person is providing me information about, oh, this store has that music, and they may have that sale, and there is a salesperson standing outside trying to give out samples. Would you like a sample? So, all kinds of things can be done with a support service provider. It's meant to help an individual who's deafblind maintain their independence. The support service provider doesn't -- is not overbearing, must be unbiased, and provide as much information, or as little information as the deafblind person wants.

CHRIS: So, it's all very much under your control, and of course, I imagine another purpose of it is to facilitate communication with other people. Especially when there's things like sign language involved.

MARSHA: Yes, that is correct. That is correct.

For example, for a long time, I used a microphone that would connect in with my hearing aids, so the sound that was going into the microphone was directly put into my hearing aids. And so, because I could physically go around and have people pass my microphone or I could pass it for them, or whatever the case may be, but it was sometimes just easier for that support service provider to help people pass the mic, and to facilitate that communication. Because as a Deafblind person, again, I can't distinguish from voices, and no matter what, I'd never hear 100% of what a person is saying. My brain does a really good job of deciphering language! But if a person has an accent, I may need them to speak slower, or if they have a really high-pitched voice, I might need them to, again, speak slower.

So there's a lot of factors that go into hearing language and understanding that language. So a support service provider can help, absolutely, with all types of communication.

ANIL: You just said something, and I'm curious. So obviously you both are very articulate, you speak well, and you have a degree of hearing. What about those deafblind individuals that can't hear? Can you speak -- can either of you speak to, I know there's tactile sign language that people who maybe don't have the best hearing --

ALICE: May I?

ANIL: Please, go ahead.

ALICE: Because I'm currently in between that spot. I have since convention lost another 30 decibels or so, so I actually sat in a booth with my hearing aids on with 112 decibels of sound and heard absolutely nothing.

ANIL: Wow, wow.

ALICE: So I'm past the profound -- I've had a severe-profound loss from the beginning, and the right ear is pretty much tanking, and it's well beyond the original profound level, which was 110. So I know that, for me, definitely, I'm on the speed track for cochlear implant in that ear, hopefully before Christmas.

ANIL: Mmm.

ALICE: But for me, right now, for instance, I'm raiding the captions, but I'm also reading the captions on my braille display, so that I'm doing three kinds of things simultaneously as some people say. I can still tell that somebody is talking, sort of, but I, too, don't have the ability to distinguish a lot that way anymore. If I'm walking, with even familiar people, if they get beyond arm's length, they're gone. I don't pick them up, sound wise. I might physically perceive that they're still present, but once they're past arm's length, they're invisible.

And for the people that don't speak, I prepared for that as well, because I use multiple kinds of apps to cover that. But the idea of not being verbal, here, again, I have apps for that, in certain situations where it's just not worth the bother of trying to talk. I get in lots of trouble when I go through the airport. Because of the fact that I do speak, they assume I hear. It gets me in tons of trouble, because I don't. When you add noise of any nature, and sound that bounces off the walls and everything else, and big rooms and all that. Or echoes. I remember the first convention I went to with Mr. Ruffalo, or seminar, I had never heard an echo before. I had just been implanted. I thought an echo was something I was supposed to talk over.

(Laughter.)

 

ANIL: No, that only makes it worse!

ALICE: But that's something that's equally different for all of us. We don't have the same hearing history that people perceive us to have. I mean, I speak very well, but my dad insisted, but I don't have the hearing history that goes necessarily with that language. I like books, and I do lots of other things to keep practicing hearing, but it wasn't built in, and it wasn't automatic. And some days, I really have to think very hard on what I'm saying so that I say it correctly. And every once in a while, I will actually stutter, but not usually.

But for many of us, I can do tactile sign. Not really great at it yet. But it's coming, because that need is going to be there. Because when I'm at track, for instance, in bright light and sunlight, and I'm also hypersensitive to light generally, I don't have any vision --

ANIL: And Alice --

ALICE: And after 20 minutes, it's gone.

ANIL: Can you explain to our listeners what tactile sign is?

ALICE: It's very similar to ASL, excepting that it's hand over hand. While you are forming whatever letters you're doing or whatever sign symbol you're using, I'm actually physically touching it so that I can tell.

ANIL: Thank you.

ALICE: And so, for, you know, my favorite thing currently, because some days, I also don't like the wind for the same reason, because --

(Laughter.)

I can hear it, but it becomes the only thing that I hear when I'm outside. If it's a windy day --

ANIL: Hmm.

ALICE: I'm more likely to take my stuff off, get to where I'm going, and put it back on, than I am to keep it on, because I'm not getting anything except pain and disorientation.

ANIL: Wow.

ALICE: So I use most of the same things that Marsha does, and some of my other deafblind friends, some of them that can actually see a little further than I can, but that's because deafblindness is a continuum, just like with blindness, the idea there we're actually looking like we're looking at our phone, and somebody determines that you can't be that blind then!

ANIL: Uh-huh!

ALICE: It has nothing to do with anything, with what you think we hear either. And I equally get in trouble because people perceive, because I know how to function in the world, I've been doing it a while -- that because of how I behave, it means I hear what they say, and it has nothing to do with each other.

So --

CHRIS: Sorry -- continue --

ALICE: Go ahead, sir.

CHRIS: I was going to say, with respect to that, and I appreciate the education on the terminology, and it's also not just learning terms, but learning about the ways that you -- that both of you interact with the world as deafblind individuals, which is really helpful.

What is it that you want people to know in terms of... I hope I'm putting this in a positive way... but, you know, we talk about the courtesy rules of blindness, and wanting to be treated with respect and not wanting certain things to be assumed. You touched on this earlier when you were saying that you're perfectly capable of letting people know what your needs are, and aren't.

So I mean, I would assume that part of it is just, you know, not making assumptions and not interacting with you necessarily in a different way, unless you tell us to. But are there any things that you want people to know about acting respectfully and inclusively when interacting with individuals who are deafblind?

ALICE: Well, sometimes, the most important thing is -- oh, I can tell you the WORST thing in the world is "I'll tell you later" or "it's not important". When somebody is talking and we ask what they said --

(Laughter.)

Those are like "can I kill you today?"

(Laughter.)

Because it's like you dismissed every possible way we have of figuring out what you just said.

ANIL: Yeah.

ALICE: It says you're not only willing to repeat it or rephrase it, but you're saying we don't count enough to have said it in the first place.

CHRIS: I see that, yeah.

ALICE: My children have that problem periodically, because they think it's a matter of paying attention, but it isn't. Because I can be as attuned as I want to, and am trying, and I will still, I have visually, I have no depth perception, I have no peripheral vision, and like I said, you add light to a room, and most of everything that I did see is gone. The best time for me is just before it rains, nice and overcast. I actually get something.

So, but for communication, taking --

MARSHA: If you --

ALICE: Taking the time, not rushing --

MARSHA: If you like, if you like, Alice, I can go over the communication rules.

ALICE: Yes, please, thank you.

MARSHA: Okay. Sorry, I didn't mean to cut you off.

ALICE: That's okay!

MARSHA: Okay. So, generally, we have the communication rules that we abide by in the division, and that's, anybody that interacts with us will soon, if not stated, will soon understand.

So, number 1. When folks speak, they should always say their name when they're about to speak. For example, Marsha, hi, my name is Marsha, and that's, for example, I'm talking. Then, you know, when Alice talks, she'll say her name.

Number 2, there always should be a pause in between speakers. Because, again, the way we understand and process language is probably a lot different than most hearing blind individuals do. And then also, if there are interpreters or CART or captioning, taking place, we need time to have those communication methods catch up.

Number 3, so, there's a pause, number 3, folks should not talk on top of each other. And in some cases, that means that there's an order. And that can be alphabetical or a prearranged order to how we speak. However people want to have that happen.

And then, you know, taking pauses so that people can have time to process language, to eliminate all of the background noise, to slow down, to give time, people time to say what they need to say, and then, you know, just to also be respectful. You know, again, like Alice was saying, I dislike when there are actual lunch meetings, because I can't eat, listen, and do tactile sign language all at the same time. Because my hands are going to be busy!

And so there's a lot of other things that I could say that are generally rules, but those are the main ones. Again, say your name, give pauses, be respectful of the person speaking. Don't talk over. If you have something to say, then make sure that's said.

A lot of times, we think that when people say, like, yeah, yeah, yeah... that typical, normal communication that lets other people know that you're listening or there you agree --

ANIL: Uh-huh.

MARSHA: A lot of is extraneous, and, yeah, we're taught to do that, and that's okay, but sometimes it can be very distracting.

CHRIS: That can be a barrier. Yeah, I can see that.

ANIL: Are those posted anywhere, Marsha, because maybe we can put those in the show notes. We'll find a way to circulate that. That's a great idea. We probably should have gone over those before we started the podcast. Hopefully we haven't violated too many of those communication rules during this interview!

(Laughter.)

 

MARSHA: It's okay, we forgive you! 

ANIL: Any final remarks to the listeners before we close out?

ALICE: This is Alice speaking. We're mostly normal. I like music. I sing. I'm also quite artistic, and I draw. Most of my pieces are fairly huge, but I only do charcoal. Although I did paint something once. Somebody in New York has it, I'm never getting it back.

(Laughter.)

But, you know, the things that people think we can't do, it's just a matter of how you plan it and how you figure it out.

CHRIS: Yup!

ANIL: Yup.

ALICE: And I mean seriously plan it, but it can be done. I'm still learning, and because I live where I live, that's absolutely nobody to do sign language with. I do a lot with other people in other situations, like when I do plan events with DBCAN NJ, I have a personal CF, communication facilitator, and I go to their home, because we know they're safe, and they'll communicate for me, for instance, like in a game, we'd have ASL interpreters, we'd have aural people speaking for those who can't speak, then we'd have the captions, and all those other things, and we're talking about playing bingo, mind you, so there's all of that stuff that goes with it. That person would help me stay on point. And for instance, in the chat group, I'd be able to -- we'd know ahead of time know who is going to be in the game, so we chat with each other on breaks, and it's a lot of fun, and if you plan it, we can have fun. And we have consistently, for the last couple of years except this year, had a chat time with the division, and because social -- it's the only thing we can do! And we can't do that much of it under COVID conditions. So it takes some adventures to figure out other ways to do it.

CHRIS: Well, we're all looking forward to being able to be more social outside the time of COVID.

ANIL: Yup. Marsha, any final words?

MARSHA: Yes, I would like to say that, yes, we are very much normal people. You know, just like the Federation says, it's respectable to be blind, it's absolutely respectable to be deafblind, and for anybody out there who is thinking, well, you know, my hearing is not as good as it used to be, you really should think about going to get it tested, because you never know when you're trying to cross the street and you may not hear that car or that truck. And I'm dead serious! There were many times where I had very close calls before I began using hearing aids.

Or when you're in an emergency situation, and somebody next to you is trying to say something, and you cannot hear what they're saying.

So, being a person who's hard of hearing and who has a vision loss is okay! It's okay to wear hearing aids. It's okay to be deafblind. And if you're curious about the division, I encourage you to come and check us out. We're not going to bite!

(Laughter.)

We may have quirky little workshops or, you know, fun little communication activities, but it's, again, all about education, and you don't have to be just deafblind to be in the division. I love having conversations about deafblindness. If there's one thing that I have learned about myself and about being deafblind, it's that, like, I'm meant to help those folks who are just like me!

ANIL: Mmm.

MARSHA: And I love the Federation, I'm a long time NFB person, and I always will be, but I want so much to be accepted into this organization, and we're making great strides at getting there. But we have a long way to go, just like, you know, the diversity and inclusion.

So, you know, again, we're normal, and it is okay, it is respectable to be deafblind.

CHRIS: Thank you.

ANIL: I appreciate that, very well said. And we count our deafblind members as true members of our Federation family. We're happy to meet with you both. Hopefully this episode of the Nation's Blind Podcast will help serve not only the members of NFB, but society in general. Thank you for spending time with us today.

ALICE: Thank you.

CHRIS: Well, Anil, I know I learned a lot from that. That was super educational for me, and I hope it will be for our listeners as well.

ANIL: Yeah, yeah, it's always interesting, I mean, I've known Alice and Marsha for quite some time now, but even in that discussion I learned so much more about them. I think it's so phenomenal, and I hate to do this, because we do this with blindness all the time, when people say, oh, you're so inspirational or whatever, but I just have to be real candid. I was on a plane and I had my allergies backed up really bad, and I got to the airport, I may have shared the story before, but I was so congested, I could not hear, everything was so muffled, and I tell you, just traveling through the airport gate transferring to my plane was an ordeal. And luckily as a blind person I know this -- I hadn't received any training as a deafblind person. And both of them talked about how the Helen Keller Center worked with them directly on that. And I think it's good to know despite whatever odds are out there, the human spirit is so intrepid that we can live the life we want, and I think those two ladies just exemplify that.

CHRIS: I think that's right, and it's so important for people to focus on that. Because for you, that was an experience not unlike our sighted friends have when they try to wear a blindfold for a few minutes.

ANIL: Uh-huh, uh-huh. And they think that's what it's like to be blind. It's like going blind, but once you get the training...

CHRIS: Yeah, so for Alice or Marsha, that experience would not have been nearly as intimidating as it was for you.

ANIL: No, I wish one of them was there to help me!

(Laughter.)

 

CHRIS: Exactly, exactly.

ANIL: That would have been wonderful.

CHRIS: I hate plane head. That's the worst.

ANIL: I think another important part of what they talked about is I loved hearing the accommodations that we need to put in place to make sure they can access the information. So many people think of that as just a burden, something additional, but I love pointing out the fact -- so we talk about captioning. That's a great way for deafblind to access information through the braille keyboard, but I also recognize that my sighted friends, when we're hanging out at the bar, they benefit from captioning because they're watching television, they can't hear it, and they're reading the caption screen. So I really love pointing out the fact that making accommodations and providing access to information to individuals that may have a different utility for that information doesn't negate the benefit that it may have to other people that it's not even intended for.

CHRIS: You know, it continues to be true that the more inclusive we are and the more accommodating we are of people with all kinds of differences --

ANIL: Uh-huh --

CHRIS: Ultimately the better off we all are.

ANIL: Yup.

CHRIS: The more information access we have, the more ways we have to interact with it. We're going to post a transcript of this podcast --

ANIL: Yup.

CHRIS: And that will be another way that people can access the information in it.

ANIL: Does the division have a website?

CHRIS: The division does have a website, and it is nfbdeaf-blind.org.

ANIL: Okay. So a hyphen between deaf and blind?

CHRIS: Right, right.

ANIL: A dash, rather. And that would be deaf-blind.org.

CHRIS: Right. And we'll put that in the show notes as well. We want to know what you think of this episode, and we also want to know what differences you have or that you want to hear more about, or that, you know, we need to explore in the Federation so that we continue our efforts around diversity and inclusion, but also just learn to respect and appreciate our members who have, you know, things about them in addition to their blindness that they are adapting to and that we can learn about so that we're all better off for it.

ANIL: Absolutely. We love all the communication from our listeners, so a variety of different ways that you can reach out to us. I'm going to take the easiest one I know so I can get out of the way. Get on the phone. Call us at 410-659-9314 extension 2444. If you have any recommendations about topics or ideas for the podcast, reach out to us.

CHRIS: Absolutely. You can also do that by e-mailing podcast@nfb.org and you if find us on Twitter at @nfb_voice, and you can find us on Facebook, the Book of Face as my buddy Anil calls it.

(Laughter.)

Just search for National Federation of the Blind, and you'll find our national organization and probably a lot of our affiliates too, but you can directly contact the podcast through our national Facebook page.

ANIL: And always visit nfb.org for more information. Remember, as always, you can live the life you want.

CHRIS: Blindness or deafblindness doesn't hold you back.

ANIL: Cool. Let's see what we got. Yeah, that's close to a good solid hour of content. Good luck, Will.

(Laughter.)

(End of transcript.)