Episode title and number: Featuring Sherri Rodgers In Recognition of DeafBlind Awareness Week Season 2 - #6
Brief summary of the show:
Welcome to Season 2 Episode 6 of Bold Blind Beauty On A.I.R. In recognition of DeafBlind Awareness week later this month we talk with guest, Sherri Rodgers, about what it's like to live with dual sensory loss.
Bullet points of key topics & timestamps:
0:00 | Welcome
1:48 | Living With Usher Syndrome
8:03 | Communicating With Usher Syndrome
12:45 | Common Misconceptions
16:38 | Dana’s Beauty Byte
20:33 | A Discussion on Vision Vs. Hearing Loss
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Stephanae McCoy: Welcome back to another edition of Bold Blind Beauty On A.I.R. podcast. The show this clearing the air for more A.I.R. (Access, Inclusion, and Representation). I’m Stephanae McCoy, and with me are my co-hosts,
Nasreen Bhutta: I’m Nasreen Bhutta
Sylvia Stinson-Perez: and Sylvia Stinson-Perez.
Steph: Access is the word of the year on Bold Blind Beauty On A.I.R. For this month, I went back to Webster’s dictionary and I came up with a different definition and the definition is as follows: Access is defined as permission, liberty, or ability to enter approach or pass to and from a place or to approach or communicate with a person or thing.
June 26 through July 2 of this year, is DeafBlind Awareness Week. The focus this year is diversity and inclusion: Creativity and innovation are built upon a diverse group of perspectives. Who better to help initiate that innovation than the DeafBlind community, a group of people whose lives are driven by the pursuit of change and innovation? ~Helen Keller National Center for DeafBlind Youths and Adults.
I am so thrilled to introduce a very good friend of mine, who is our guest. Her name is Sherri Rodgers, and she is going to be sharing some of the things that she has gone through in her life as a DeafBlind person. Sherri, can you tell us just a little bit about yourself before we get into our questions?
Living With Usher Syndrome
Sherri Rodgers: I am DeafBlind, have Usher Syndrome since that’s what being DeafBlind is. I have a cochlear implant and I’ve had that since 2017. And I grew up accepting, I was farsighted. So my main thing was when I started losing my sight was I could see things better at a distance, but I couldn’t see anything up close. And that was very frustrating.
Nasreen: Hi, Sherri, what are some of the biggest challenges that you have faced in your time?
Sherri: I would say the main thing is learning to use a cane. I still had sight when I graduated to the use of a white cane. And there were times when I felt I didn’t need it only to find out I did. So then I use, you know started using it regularly.
The other challenge is right now at work. They’re doing a remodeling job. Because they’re about to put a Starbucks in, so their remodeling the whole store. And right now it’s been difficult because the way they have reconstructed our department is not very user-friendly to a blind person. I have a friend who helped me to figure out how to find a landmark that would take me directly over to the case where I put my sandwiches.
Other challenges are dealing with customers. I can be right in front of them with my cane and whoever is sight guiding me has to stop me because the customer will run me over.
The other one I recently went through a fire three weeks ago, in which I did not hear the fire alarm in time. And didn’t hear my neighbor across the hall pounding on my door because I had fallen asleep in my recliner. So when I did wake up and heard it I kind of thought, oh my gosh, I grab stuff I needed and when I went out the hallway was full of smoke.
Sylvia: Sherri This is Sylvia. And I wonder, what would you say are the most significant challenges for people who have combined hearing and vision loss? Most of the people who listen to our podcast are people with visual impairments, and some of them/us are getting older and starting to experience a little bit of that hearing impairment. This is certainly not the same as having Ushers but it does impact your ability to cope and adjust. So what are some of the things you would say, are the unique challenges of having a combined hearing and vision loss?
Sherri: Yeah, I was always hard of hearing, not totally deaf. But I would have to say that some of the things a DeafBlind person would, is the ability to navigate and not hear anything, but yet still know where they are and where they’re going.
I have a twin sister who is DeafBlind with a cochlear implant. And when she takes that off at night, she is totally deaf. But she has adjusted to a cochlear implant enough that she does not hear as well as I do. But we recently last year moved in together into a brand new apartment, in a building that has eight floors. And we have never lived in this type of environment where there are lots and lots of people in one building. And then we have to get from the third floor to the first floor by elevator. So that this is a whole new experience for us of being DeafBlind and navigating, which we picked up on really quick.
Sylvia: So good orientation, good orientation, and using landmarks. Seems like a really important thing when you don’t have that hearing to count on.
Sherri: Right. And it’s one thing I have discovered with a cochlear implant is hard to determine where sounds are coming from. But we like I said, we have adapted very easily. And the people on our floor know us well enough. And, you know, they’ll sometimes say, “you know, these are things I could not do. Or if I was in your shoes, I couldn’t do that.” But I kind of get a little irritated when people say that, because if you ever reached that point, then you do what you have to do.
Communicating With Usher Syndrome
Sylvia: What about communicating with others? I feel like and I think about and Steph I Nasreen I wonder about you guys, when I feel like I’m in a loud place where I can’t see or hear, I find it really difficult to communicate with others.
Sherri: Oh, it is disorienting. It’s also frightening. Because I cannot get oriented to the layout of the room. I know when we would meet in person, if there were a lot of people already there, then sometimes I would have trouble trying to find where to go sit because I didn’t exactly know the layout of the room or the layout of how the tables were set up or where the chairs were.
A lot of times I would have to yell and ask for help or yell and ask for somebody specific if I wanted to sit with. But in a situation, like a conference, it would be very unnerving. Because people don’t know me. I don’t know them. They don’t know that I’m hard of hearing. And so that made it even more difficult trying to navigate and try and find a place to sit or navigate and try and find people I knew that I could talk to.
Nasreen: I think we’ve all been in that space and place Sherri I mean, I feel like the deer in the headlights when there’s just too much noise. And I also get disoriented and I just have a vision issue. So I empathize with what you’re saying completely. I also want to ask you a question Sherri, what about some of the tools? What are some tools that you can share with us or techniques that a DeafBlind person would use that perhaps, you know, somebody who’s visually impaired might not think of using or we don’t use it all and don’t know?
Sherri: I have a braille display, which I use with my phone. But I have also found that using an iPhone, and my braille display, I use the braille display more for navigating. It’s easier to navigate, to know where I am. But that’s one thing that a DeafBlind person would absolutely need to communicate with.
Steph: You did talk a little bit about the devices that you got, after the fire. Can you tell us a little bit more about how those work to alert you when there’s something going on, you need to know?
Sherri: Yes, I have a device that I wear in a case on my hip. And if the sound monitor outside of my door above my doors, anything coming through the sound monitor, would automatically you will get three vibrating beeps to alert you to the sound monitor. The doorbell would have two vibrating beeps, also in sets of three with vibrate.
And then we also have a smoke alarm in Susan’s bedroom. And if that ever went off to alert us that there’s smoke in the apartment, then it would be a constant vibrating signal, until we found out where it is in the apartment. If that ever went off, it would be challenging to try and find out where it’s coming from in the apartment. So we would know how to exit the apartment if we had to.
And there are other devices, but I didn’t look into them. So I’m not really familiar with what the other devices are. But again, they would all have different vibrating numbers of vibrating signals to alert you. And as soon as you know how many signals you’re getting, then you would know right away what the device is and what the problem is.
Steph: So Sherri, can you share with us what are some of the most common misconceptions that you encounter when people learn that you’re DeafBlind?
Sherri: Well, number one, they automatically say, you know, they know how well I’m working and see me navigating, they right away, say “if I’m in your shoes, I would not be able to do that.” So that’s one misconception. They think they wouldn’t be able to do it.
There’s a group of people that I work with, that all started about 10 or 11 years ago. And two of them, they were standing behind me talking one day and I heard them. I guess they were trying to be inconspicuous. But I happened to hear one of them say, “I don’t know how to talk to her. I wouldn’t even begin to know what to say to her. And I just let them go on for a minute. So finally I turned around and I said excuse me, I said I know you’re talking about me. I said my name is Sherri Rodgers I am totally blind and I am hard of hearing. And if that conversation you just had was meant not to be heard. Well, I heard it. I said what you to talk to each other about you can talk to me about.
Sylvia: Even to add to that is that I do think that oftentimes when people see someone as quote different than they are, they’re uncomfortable. People are uncomfortable with disability. And so I think we do have such an opportunity, and maybe even a responsibility to help people understand that. Hey, just like you said, Sherri, we are people. We have lives. We have interests. We have hobbies, we work we have families. And so all of those things are really important in helping people understand that we’re just people first. So Sherri, would you say that there’s a life motto or quote that you have lived by that’s helped you find the success you have.
Sherri: God made me blind and hard of hearing for a reason. He knew I could do it. He knew I could go through life. Be the success that I feel I am without any regret.
Steph: God made me blind and hard of hearing for a reason. He knew I could do it. He knew I could go through life. Be the success that I feel I am without any regret.
Sherri: Can I give you my email? Okay is S H E R G E firstname.lastname@example.org. If they would like to call me or text me, they can reach me at 412-685-2810.
Steph: Thank you so much, Sherri.
Sherri: You’re welcome. It was a pleasure to be here today.
Dana’s Beauty Byte
Dana Hinnant: In honor of Men’s Health Awareness month for June, these tips are for you. It’s important for men to take care of their skin you need to be on a routine as well. Look for products that are designed specifically for men along with ingredients.
It is important to cleanse your skin daily. However, I recommend if you only do it once a day, make sure you do it in the evening because that’s when you have the most buildup and debris from the day. And please cleanse your skin after a workout.
Make sure you’re following the proper shaving technique and that you are using the proper tools and products for your hair type. And if you need help with this, you can always consult a barber. If you are wearing a beard or facial hair that’s been quite popular during this pandemic, make sure that you take care of it. You must cleanse, hydrate, and keep it trimmed in shape. You want your beards to look neat.
And if you have any doubt or which direction to go, when it comes to your skincare, you can always consult with an esthetician who’s licensed skin care professional. Or go to a dermatologist if you have more extreme issues. And that’s your Bold Blind Beauty Byte.
Sylvia: I have to say, Dana, I love how you told those men to cleanse after they work out.
Dana: Well, it’s very important.
Sylvia: It sure is girl. We don’t want to smell them either.
Dana: No, they have to take care of their skin as well. So it’s very important for them to get on the right routine that’s set up for them. And if they keep things simple for themselves, they can. They’re more likely to stick to it.
Sylvia: Men are notoriously bad about taking care of themselves and their skin. They really are.
Nasreen: Yeah, the good thing is that there are some products out there by different companies out there that cater to men’s health care. And, you know whether that’s facial products, deodorants, or hair care, but there are lines out there for men, and they should go check them out.
Steph: You know, one of the interesting things that I’ve found, through some of my reading is that some of the products for men well, actually, equal products for women are cheaper for men than they are for women. And yet they have the same ingredients. And I found that a lot of women will use men’s products versus women’s products because they understand the difference. And I know it’s a marketing thing. But why is that Dana? I mean, it seems so cruel.
Dana: Right! I think it’s like you just said Steph it’s a marketing thing. And let’s face it, women are going to pay for beauty products more so. So they’ll put out the money for whatever their need or whatever they’re looking for.
Even though I know things have changed in dynamics and different generations are different because there’s a generation of men that are all into taking care of themselves. But for men, it’s usually a simpler routine than a woman. But I really think it’s that whole, like you said, stuff, that whole marketing thing. If a woman is going to do that, I would recommend looking at those ingredients and really understanding, can I use this on my skin? Will this work for me too?
Sylvia: So today, we’ve talked about having combined vision and hearing loss. This is often a thing that can happen to us who are visually impaired as we age, in some ways, naturally. So we got to take care of our hearing as well. But, you know, there are many people who have combined hearing a vision loss. And we talked about some strategies for overcoming that. And now we’re talking about age management for our skin. So interesting conversations.
Steph: Thanks so much, Dana. Especially for the advice for the men because that’s, it’s important. And it’s something that we don’t really focus on enough.
Sylvia: And it’s something that men don’t focus on too.
Nasreen: It is great to see companies now catering products towards men, and men’s health care, and men’s beauty in general. So that’s really great.
Sylvia: And men, it matters, how you look and smell and feel it matters.
A Discussion on Vision Vs. Hearing Loss
Nasreen: Since we’ve been talking about, you know, visual loss and hearing loss, I have to ask you guys, which one would be more? Do you guys think it harder to navigate being visually impaired or being hearing impaired? What do you all think?
Steph: Can I go first? When I was younger, I remember thinking that going blind would be the worst thing that could happen. And when I say blind, I mean totally blind, because I had a friend who was totally blind. And that was my experience. So if I went totally blind, I wouldn’t know how I could go on.
But now that that is my real-life experience, I’m not totally blind, but I’m on the blindness spectrum. And being that whenever I get really, really sick, you know where the head’s congested, and everything is clogged up. When my ears get clogged, it feels like my head’s underwater and I can’t hear very well. I really disliked that feeling. And I don’t know that being deaf feels like that I have nothing to draw that experience from because that’s not my story. But I think I would really hate not being able to hear I think that that would be really difficult for me to navigate.
I just, and again, because it’s not my story, I can’t wrap my head around it. Now, I am losing some hearing. But I only know that from other people’s perspectives from the way I talk and from, having my devices turned up. I haven’t had it, assessed medically, and I’m putting off doing that I guess because it’s sort of a self-protection thing, and I’m afraid to hear what they’re going to tell me.
It is, it is and I know I have to do it. I was actually at an event a woman there was from the Helen Keller center, and she was telling me to get it done because that would be a dual disability. So I am going to do it. But for me, I would have to say hearing.
Sylvia: So when I say first off, I will say that you know if you look at studies or kind of just anecdotal stuff, people will say that they fear vision loss more than almost anything and way more than they fear, hearing loss. And so over the years, you know, I’ve worked in the field of blindness and encountered many individuals with dual sensory loss, some who had hearing impairments as a result of aging, so they had vision and hearing impairment. So low vision, low hearing, but others who truly were deaf-blind due to Ushers or other things.
And so then I was teaching college and I actually asked my college students just as an introduction to blindness, what they would rather experience that they felt would be easier to live with? And I can tell you that in every single class I asked and I taught for five years, every single class, the majority, almost every single person said that they thought it would be easier to be deaf.
But by the end of class three, four months later, they all said they thought it would be easier to be blind. And because in my experience, having worked with people who are deaf-blind, and then working across the hall for many years, with the Deaf and Hard of Hearing Services department right across the hall from us, and just having so many friends who were hearing impaired, and then having many friends who are deaf-blind communication, is the major challenge that I have seen that people who have significant hearing impairments experience.
We, as people who are blind, can talk to anybody. When you have a hearing impairment, your communication drops with people who can communicate with you. And if you’re if you are deaf, that could be someone who can use sign language, if you’re deaf-blind, it might be only someone who can use tactile signs, or who you can use Braille with. And so your world shrinks. And I think that that has to be so hard. And I’ve seen it be so hard for people.
Nasreen: I have to agree with Sylvia because it’s something that looking at my dad now who’s hard hearing, and really screaming at him to just o communicate, really to get our message across its simple message and more in-depth message. It’s very frustrating. And it’s a challenge. And different aids we have to use so that he can read the whiteboard or hear or read our iPad or something, but just to communicate. And that’s the biggest, it’s a challenge and a barrier, the same time.
Personally, I think now that I look at things, I guess I would rather be blind because like you said, at least I can communicate. I can hear I can get around and help myself, knowing to use echolocation and things like that to find things and, and other aids. But to not being able to hear, I guess I would feel like I would be disconnected from the world and communication would be the most difficult thing to deal with. I would feel like I’m unheard. And probably people would shy away from me.
Or like Sherri said, how do we talk to that girl? How do we communicate with her? And that’s a barrier. And that’s something that’s utterly difficult and painful to as a person. I mean, that was a lot of emotional trauma.
Sylvia: So I think we always on Bold Blind Beauty On A.I.R. we often just talked to people who have experienced challenges and overcome those. And today we talked to Sherri who’s overcome hearing and vision loss. And I think that we have to admit that having any disability, let’s just be honest, living life is a challenge.
And we need to have more compassion for each other and try to put ourselves into other people’s shoes and experience what must that be like. And we talked a lot about frustration and how frustrating that must be. And can we reach over to that person and make that connection, whether someone is deafblind, whether they’re hearing-impaired, whether they’re blind, whatever it is, whether they’re going through a challenge, what can we do to connect to people and create more inclusion?
Steph: Ladies, this was a great segment, I love being able to talk with different people who are experiencing different things. And one of the things that we’ve talked about here on Bold Blind Beauty On A.I.R. is that being different isn’t bad. You’ll always hear me say we have to get to a point where we accept people where they are as they are.
And even though we’ve talked about some of the frustrations with communication and those types of things, with people who are DeafBlind or people with maybe perhaps other disabilities that we may not fully understand. I’m a great believer in there’s always a way and this is one of the reasons why Bold Blind Beauty fully supports A.I.R. (Access, Inclusion, and Representation).
Because it’s important that like you said Sylvia, we are compassionate, we are kind we are patient and we can connect with people because there is always a way that’s why we are doing what we do. So I just thank you all so much for this conversation and this episode and for spreading awareness about DeafBlindness Awareness Week.
Nasreen: Thank you for listening to this episode of bold blind beauty on air. Please subscribe and if you enjoy this show, please do recommend it to your friends and family. Thanks for listening everybody.
Transcribed by https://otter.ai