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Becky Hales, the founder of In The Wrong Story, is the guest of the All About Audiology podcast this week. Becky was a teacher for the deaf/hard of hearing, and she then taught students who had multiple disabilities. Currently, she is studying for her AUD. Her goal is to “increase communication and understanding between people with disabilities, families, healthcare providers, educators, therapists, and the non-disabled world!”

0:50 – In The Wrong Story was a blog originally related to Becky’s sons’ allergy, but she eventually decided to turn the purpose of the blog  around in order to encompass all disabilities. It is alright to grieve and feel disappointed about outcomes being different than one had initially expecting things to go.

4:55 – While teaching, Becky realized the diversity among the deaf and hard of hearing students. Even though communication is the goal, there is not a ‘one size fits all’ when it comes to communication!

9:00: Becky had to watch Sound and Fury for one of her classes. Becky was upset with how the point of view of the main character with the disability was not at the forefront of the decisions made within the narrative! This film is also not particularly reflective of how things are currently.

14:30: As Becky prepares for her second career, within her AUD program, Becky and her peers are seeking out that information that they feel is missing from their program.

17:25 – Universal design in the idea of making different things as accessible to as many people as possible. If we design things with accessibility in mind, life is easier for all. A disability is a social construct. It’s not the lack of hearing that makes a disability, it is a lack of an accessible society that makes a disability.

36:00 – Semantics vary based on different cultures and regions. Thus, we should ask those with a particular disability what words and phrases might be considered offensive to their life story.

For more resources and research visit:

All About Audiology Website 

All About Audiology Facebook group  

All About Audiology Instagram

Check out Becky’s website here: https://inthewrongstory.com/

To support the All About Audiology podcast, visit our Patreon website here: https://www.patreon.com/allaboutaudiology

Listen Next:

Episode 72: All About Listening and Spoken Language – with Dr. Carol Flexer

Related Episodes

Episode 43: All About Creating A Vision For Your Child’s Life with Genia Stephen

Episode 68: Auditory Processing Disorder (APD), All About YOU with Juliana Pedri

Episode 41: All About Deaf Plus and Rare Disorders with Madeline CheneyMadeline

Episode 72: Episode with Mallorie

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Transcript:

Dr. Lilach Saperstein:

Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein, and you know that we are always talking on this show about different aspects of the experience, not only in audiology, but also in parenting, also in education, and also about disabilities, and all the different ways that these things interact with each other. 

Today’s guest is Becky Hales. Becky is @inthewrongstory on Instagram and inthewrongstory.com, and she is sharing some amazing insights and thoughts that really do integrate all these different experiences. Becky was a teacher of the deaf and now she is studying for her AUD. So I’m so excited to welcome you. Welcome, Becky, to the show. Hey, hey! 

Becky Hale: 

Thank you. I’m so excited to be here.

LS:

I have so many things I want to learn from you. Tell us about where In The Wrong Story began and how you founded this new resource.

BH:

It actually started because my son has a food allergy, he’s allergic to eggs, and when I was completely revamping everything that we were doing related to food – having to rewrite recipes – there are several blogs out there, but I was like, here let me put another one out there. So, I started originally it was Wrong Story Bakes because I was trying to think of a clever baking name and I’m a huge theater nerd, so if you know Into the Woods, there’s the character of the Baker’s Wife and she has this fantastic line that “I’m in the wrong story” and I was like that really just encapsulates the food allergy mom perspective but really just the perspective of most parents of kids with any sort of disability, that “this isn’t what I expected. This is not what I was planning on going through.”

So, originally it was baking related, but then my son’s actually starting to grow out of his allergies so now we’re not doing as much allergy-friendly baking but I was like, I’ve always been really passionate about helping all people with disabilities, and disability advocacy, so I decided to turn it around, encompassing all disabilities and decided to keep the name because it still holds true and I know there’s nothing wrong with disabilities and I completely agree, but it’s just that kind of initial feeling that a lot of people have when they discover that they have a disability or that their child has a disability or any number of situations that we all find ourselves in and we’re just like this is not what I was expecting, this is the wrong story, so I just kept the name and decided to go with that.

LS:

That is a great origin story, and I think it’s such an incredible thing to validate and put out in the world because people really do come up to a lot of criticism. When you’re in the early stages of trying to figure out what is this, no matter what the this is – hearing levels if it’s about allergies or anything else, you are in that state of overwhelm/confusion trying to figure it out. There’s a hazy murky future all of a sudden, whereas, before you kind of thought you knew what the path was, and that goes for everybody, all the time.

But when it’s in the specific area of disabilities, you also get a little bit of pushback from even doing that process, and it’s like well it’s ableist if you grieve your child’s hearing loss, and it’s like wait what? You know, you just got here. Most people are hearing people. And then there has to be room for that experience of grief or loss. And then maybe you can get educated, and learn, and accept, and do all the things you need to do to then be like: “Okay, maybe it’s not a loss” necessarily in that language. But if it is to you, then it is.

BH:

Absolutely. And I think it’s important to recognize that we grieve a lot of things, and it’s okay to go through that process, it’s not just about disabilities. I joke: my husband and I are both mega nerds, we love Star Wars and Marvel and we’re both theater nerds. That’s actually how we met. So I joke that if my kids decide that they are really into sports and want to play sports, I’m going to grieve, a little bit if they decide that they don’t want to go into the arts. I’m going to be “aw man” and that’s okay. It’s not that I’m going to keep my kid from doing sports, but it’s okay to feel a little bit of loss for “oh, I was really hoping that they would do this” and so it’s the same thing when you have a deaf child or a food allergic child or an ADHD child, whatever, it’s okay to say, “I’m a little disappointed that this isn’t how I was expecting things to go.”

LS:

In a bigger sense, I also love the idea that we all live in stories all the time. That the human mind’s experience is to always put things together and make stories, and that you can make new stories. It’s also that you don’t always live in the story. There is a time when you can say actually today, in this moment, in this breath, I’m a human existing. So I love the idea that you’re in the wrong story but also that it’s not a story at all sometimes.

…

So tell us a little bit more about your experience with the deaf community, as being a teacher, and then what brought you into the AUD. That’s a whole other journey.

BH:

Yeah. That is a really interesting journey, especially because I started out very much in the ASL camp. I was very much cochlear implants are evil, are genocidal, and I was deep into all of that when I started in the deaf community. And then I went and got my degree in deaf education and I started teaching and realizing that there is a diverse world out there and that there are so many different ways to be deaf and so many different ways to communicate and develop language, and that there is not a one size fits all. 

I’m still very passionate about ASL visual support and language development, but especially what I was noticing is I had a lot of students with multiple disabilities and those students were just getting left behind. They weren’t getting amplification, they weren’t getting interpreters. They were just like, “Okay, well we have to deal with their cognitive stuff and their behavioral stuff before we deal with their hearing.” It’s like no, you can’t work on cognitive issues and behavioral issues if you’re not dealing with communication issues. 

So I started getting really passionate about advocating for all these kids and realizing that if I became an audiologist – which I loved my audiology class when I was an undergrad – and so if I become an audiologist, then if I’m the first point of contact that a family has, then I can help advocate for them, help show them what they need, and help them make those decisions, and try to be as unbiased as possible. So that’s kind of how I went into audiology, and I was a little bit nervous at first, because again, I have this strong connection to the deaf community and I was like, am I betraying the deaf community by going into audiology, are all audiologists opposed to ASL and the deaf community? And that’s one of the things I love about your podcast. You are very much not.

LS:

[overlapping] I know. [sarcasm] I wonder how we connected. Unbelievable. [both laugh]

BH:

But not only hearing from you but all the guests that you’ve had on and seeing that there are lots of audiologists out there who believe, as we believe, that it’s communication that’s the most important. How you communicate is not nearly as important as that you have access to communication and language.

LS:

Incredible! And about the podcast, at first, I was starting out trying to plan and have themes and have different topics. If you go back to early episodes, you will see it was very stiff and very formal, and I’m trying to say something and bring on guests who are going to have interesting conversations. But nowadays, we have all already connected and there’s a base on Instagram too, but through the podcast, with a guest, where it’s just more natural, we’re all kind of finding our groove and having interesting conversations, learning from each other, from all different angles around this topic that there is no one size fits all, that communication is the goal – not specifically one way, but language, being able to have those access and relationships so I’m sitting here being like yup, the podcast writes itself. I don’t need to plan anything. [Becky laughs]

BH:

Although, I do have to say that the early episodes when I was in my first semester and just getting those foundational ‘sciency’ courses, those were really helpful, those first couple episodes where you’re talking about how we make audiograms and how we do the testing. I was like “oh yeah.” If you’re a student, I highly recommend it. [laughs]

LS: 

Thank you. It’s really a passion project, and also let’s put right here, while we’re on the topic, a big, big gratitude for being a patron of the podcast, and thank you to all the patrons who support the show because I have to pay for editing and hosting, making the transcripts, and all of that. So, and as my husband likes to say, it was an expensive hobby for a while, [Becky laughs] but I do appreciate that. 

So, tell me a little more about your expectations going in, and what has it actually been like in your program.

BH:

I have to admit, our program is very technical, very. [It is] delving into the science of hearing, and the technology. We don’t have any Deaf culture requirements that we have to take, which is unfortunate. We had our Oral Rehab class. The deaf community is mentioned and you have to watch Sound and Fury, which is not my favorite.

LS:

Can we talk about that?

BH:

Well, for one thing, I mean, at this point Sound and Fury is 20 years old.

LS:

Let’s tell people. Sound and Fury…

BH:

[overlapping] Oh, yes.

LS:

It’s a documentary movie about a family making decisions about…

BH: 

Yes.

LS:

…implants, there’s generational stuff going on, and the little girl and is she like seven or so, I think?

BH:

I think she’s five in the first film. Then there’s a follow-up. 

LS:

Okay, so that’s what we’re talking about.  Movie recommendation.

BH:

Yes. So first of all, I mean, I think it is very reflective of how things were 20 years ago, but things have changed, and that is not particularly reflective of how things are now. For one thing, the deaf community is always, throughout history, impacted by the decisions of hearing people. So, because 90% of deaf kids are born to hearing parents. So, it’s the decisions that those hearing parents, often influenced by hearing professionals, are making that influences the makeup of the deaf community.

So 20 years ago, cochlear implants were pretty new, and not many people had them. There weren’t really deaf adults that had them, especially signing deaf adults. There were late-deafened adults who were getting them, but really, ASL using, deaf culture immersed, deaf adults didn’t have them. So, for one thing, parents didn’t have anybody to look to, to say “this is what the future for my child looks like.” 

And then the technology changes, as well, and it’s not a great representation. But now 20 years later, all these kids who were implanted 20 years ago are now young adults, and some of them have joined the deaf community and some of them haven’t, but those ones who are in the deaf community might still be using their implants, might not.  But there are certainly some people who still reject it and don’t like it. But it’s not as much of an issue in the deaf community in terms of rejecting deaf people who have cochlear implants because if they did that, the community would dwindle down so far.

LS:

Also, hard-of-hearing audiologists, themselves. And then also you have this term ‘inbetweeners’, you know, that’s a whole new category.  It’s true, you’re like “we’re still using this movie. Even though it’s a great movie, people should see like the issues.” But also then get an update. 

BH:

Yes.

LS:

What’s happening today. Yeah.

BH: 

Yes, I also have a really big problem with the hearing professionals in that movie. The way they treat the deaf people and if you don’t understand a perspective – and of course this is coming from me; I’m a hearing person trying to understand the Deaf perspective as best that I can – but it kind of looks like, oh yeah, you know, they’re great, they’re professional, they’re not doing any harm. But one of the quotes that really just riled me up is actually in the follow-up documentary six years later, where the little girl, Heather –  she gets an implant and then her mom who was deaf also chooses to get an implant, and the CI surgeon said, “Yeah, I was really surprised she wanted one because she might be able to understand what people are saying, but she’s not going to develop speech.” I’m like, you are looking at the CI as a tool for hearing people, to help them. You’re not looking at it as a tool that can help her and that is a mind shift that I think we really need to turn around. 

That’s actually part of the reason I decided to start blogging, was because I was like okay well I have the perspective of an educator because I used to be a special ed teacher and now I’m having the perspective of a healthcare provider, being an audiologist, and I also have the perspective of a parent because I have a child who has disabilities, and trying to bring in other people who have disabilities, to talk about their experience, because all of those perspectives are valid. But, we need to understand all of those perspectives and see things from different points of view. And with the point of view of the person with the disability being at the forefront, if we are going to be in a field that supports people with disabilities, we need to be listening to what they have to say. 

I’m actually really excited, I have my first guest blog post written by another AUD student, but she does have a hearing loss and so she’s going to be writing a post about disability and identity and everything because I shouldn’t be writing that. That should be coming from somebody who identifies as having a disability.

LS:

I think it goes back, like you mentioned right in the beginning, about your work with children with multiple disabilities, and how each professional kind of looks at their own thing. PT is gonna come and talk only about their kind of support, and then hearing is only the ears. It’s like, who’s looking at this whole child, their whole experience. I love when multidisciplinary teams rally.

BH:

Yeah.

LS:

They are so valuable. And then at the same time, you have the parents in the middle of all those nodes, trying to get them all to communicate with one another. That’s a role that many parents didn’t know they were going to have or also don’t necessarily have resources for, the time for, the education or knowledge to know that that’s their goal. That’s a lot. That’s what I’m doing with the parent groups that I run. 

BH:

I think parents deserve more support for what they’re hugely doing. 

LS:

Then I love, Becky, that you’re talking about how your experience as a mom and the different things you’ve done already – that’s all going to interact only for good for your patients. And also grateful that you’re also representing the second career students, not right out of undergrad students.

BH:

Yes, it’s tough, but it’s doable. So I’m 34 and I just finished my first year of my AUD program. I’m 10 or 11 years older than everybody else in my cohort. I love my cohort so much. They’re fantastic and I definitely take on the mom role in the group [both laugh] but I was a little nervous about that and it does take some getting used to going back into the swing of things for going to school. I’m like, Oh my gosh, I have to remember how to cite things and APA format and all of that. [laughs]

LS:

Ah, yeah, yeah, yeah, yeah…

BH:

That was not my forte. [both laugh again] But yeah, and honestly, my cohort, my friends have been so supportive and they’re the ones like “you need to share all of these stories that you have and these perspectives.” And it makes such a difference. I know when I was first getting into teaching, there’s so much that you learn on the job, and I have to imagine it’s the same in audiology. But, luckily we have lots of practicum experience that we get before we graduate.

LS:

120 hours.

BH:

Our entire last year is just being an audiologist, and so we get a lot of that experience but still, that experience is something that you just can’t get from college, that you just can’t get in a classroom, and so important and valuable.

LS:

Yeah, I think that also fits in with the diversity of voices in your own cohort that studies with you.

BH:

I mentioned that our curriculum doesn’t really touch on deaf culture issues or the use of ASL or even cued speech. I know a little bit of that. Not enough to be fluent. Enough that if you give me a sentence and half an hour, I’ll get that one sentence right but, so what our cohort is doing is we are getting together and I’m teaching as much as I can about deaf culture, bringing in deaf perspectives, showing them deaf Instagramers to follow. And hopefully, we can get some guest lecturers into our kind of underground class that we’re just doing ourselves and I’m not the only one.

It was actually really impressive. About half of our cohort is at least semi-fluent in ASL and almost everybody took some sort of either foundation of ASL or disability study. Even though our curriculum isn’t providing that, we’re providing that to each other and we’re going out and seeking out that information that we feel is missing from our program.

LS:

Incredible. That is so beautiful. And I think it represents a shift in the profession, too. Even the fact that we’re having audiology Instagram accounts, and I’m telling you, I see new ones every day. Like students and professionals all over different niches. We’ve got, you know your tinnitus people, your APB people. There’s room for everybody and it’s such a beautiful community. So yeah, there’s a much bigger, more global thing that’s happening even within our education program. That is amazing, you guys have a little club. 

BH:

Yes. [laughs]

LS:

So let me talk to you about one of the things that I’m very interested in and that is universal design. I’m learning about the topic so I’d love for you to give us a definition and why we need to be knowing about it.

BH:

Universal design is basically just a philosophy of design and this is design for everything. This could be universal design for learning, universal design for architecture, product development, just anything. It’s all about making things as accessible to as many people as possible. Ideally, making things universally accessible, but sometimes you’re just not going to reach everybody. But trying to reach as many people as possible, so some of the more obvious things is including captions on everything. Some deaf-specific ones are using a sound field system in a classroom. So that may be put in place for a deaf and hard of hearing student, but it’s benefiting the kid with APD (auditory processing disorder), and the teacher who’s not straining her voice, and the English language learner or the kid with sensory issues. 

It benefits everybody, and so that’s the key to universal design, because a lot of people think, “oh, I have to make special things for people with disabilities and it’s just so much extra work” and it’s like no, if you design things with accessibility in mind, then it makes life easier for everybody. 

One of the examples I like to use is a ramp, instead of stairs or in addition to stairs. Obviously, that makes things more accessible for the person in the wheelchair, but it also makes things more accessible to the parent who’s pushing a kid in a stroller or to the delivery guy who’s delivering things on a dolly and has a bunch of heavy boxes. You know, it may have been designed with disability in mind, but it actually benefits everyone. So I am obsessed with universal design.

LS:

I’m just starting to learn about this recent exploration for me. And one of the first things I saw was kind of like an architectural thing, the way you mentioned, that it was like this, you know, super cool, high end, fancy-schmancy, multi-level kind of co-working space, except that the top level had like see-through floors, plexiglass, and they’re like, not a single person wearing a skirt was ever contacted, because no one in their right mind put the second floor. 

BH:

Yeah, That is an excellent example, a person wearing a skirt doesn’t have a disability, per se. 

LS:

Yeah, exactly. And that’s why I bring it up. It’s not only from the perspective of people who are disabled and accessibility, but it actually benefits everyone, and I get that’s where the universal piece comes in. 

And the other way that I got into it and I was like, “yeah, yeah, yeah, I get this” is when thinking about little kids’ kindergarten class. You go in there and all the chairs are small. You’re not going to put adult-sized chairs in a kindergarten classroom and expect that to work out. The toilets are short. Things are short. Everything is designed for them. 

And so, then that’s when my question is like, is universal design that everything should be the same and available all the time? Like you can’t do that. It’s more like thinking about what’s happening in the space and adapting.

BH:

Yes, I was actually thinking about this. Universal design is not making everything the same. It is understanding that we all function differently. It seems the word universal would imply that you’re forcing everybody to go through things the same, but it’s about accessibility and it’s about having options. 

So another example is that I realized we built our house so we didn’t get to see it before we moved in and I didn’t realize until we moved in that we have handles instead of doorknobs on all of the doors. And I was like, Oh, that’s cool. And then I realized, I have a nine-month-old at the time, who wasn’t walking yet, and I was like this is gonna be great. When I have a baby in one arm and groceries in the other arm, I can just use my elbow to hit the door handle to open my door, and then that got me thinking, “huh, you know somebody who has limb differences or arthritis or something like that could use this.” So, the handle – it’s not saying that you have to use your elbow to open the door. I can use my hand if it’s available, but I can use my elbow to do it. If I could kick high enough, I could use my foot to be able to open the door. So, yes, it’s just designed one way, but it’s designed to be utilized however it is necessary. 

I’m thinking about office buildings or something like that, but they have a revolving door and a non-revolving door. Those are laws that people fought for and guess who those people likely were. People who had to fight those things and then the rest of us actually benefit from the advocacy work of the disabled, so go say thank you and then keep fighting for their rights. [laughs] 

BH:

Yes. Another thing that I did – my son, in addition to his food allergy – this kid has a lot going on but he’s also got ADHD and sensory processing disorder. So one of his symptoms of ADHD is hyperacusis, which is sensitivity to sounds. So I requested that in his IEP, one of the accommodations be to put tennis balls or some sort of sound dampening thing on the bottom of chairs, which is something I did all the time. I put in as the accommodation all the time for my kids with hearing loss when I was teaching. Then his teacher let me know that one of the students in his class has cochlear implants, but as soon as I found out that there was going to be a kid with cochlear implants in his class, I fought even harder to get the acoustic accommodation in there, because yes, it benefits my child for his sound sensitivities, but that’s also going to benefit this kid who has a hearing loss and who’s trying to work on her listening skills. 

And since I knew that that was going to help both of them, I was like “okay well now I’m really going to fight to get that put in there” because I knew, especially in preschool, most parents of preschoolers with disabilities and preschoolers who are getting IEP services are just at the beginning of this. They don’t have the background knowledge that I came into parenting with, and to know what accommodations are available, know what to fight for, know how to advocate, and what their child needs, especially with deafness, because it’s such a low incidence disability. And to know that that’s available to them, so I was like, this child’s parent probably doesn’t know to ask for acoustic treatments, so I’m going to put this into my kid’s IEP.

LS:

That’s awesome. Okay, so everyone try to be in Becky’s son’s class. [both laugh]

But I think that’s really smart, very kind, very generous but also, if I may, an incredible use of the various privileges that we all hold on different ways, like if that’s disability privilege, our white privilege, our able privilege. And also, when you have the power to then use the power to help those who are not in that position. Instead of having guilt over it, maybe people who have the least to lose are the ones who need to step up and that before other people.

BH:

Absolutely.

LS:

One of these things that, like, you can only always learn more and get more educated, and also take your space with your journey. 

BH:

Oh yes, I mean I’ve definitely learned so much by following people with disabilities, especially on social media and learning new things, learning what I’ve done wrong. We all make mistakes. I am absolutely guilty of using terms like nonverbal, low functioning, high functioning. I am guilty of having used those terms in the past but now by following people with disabilities and listening to what they have to say and taking that to heart I’m like “okay, I need to change my language. I need to treat them with respect and the respect that they want” and, actually, on that note, I wanted to mention because, just today I’ve seen a lot of people who are deaf talking about how deafness is not a disability and everything, which I absolutely understand that perspective. And I know you’ve said this before, if you go to Gallaudet, if you go to DC, or if you go to Rochester, New York, or Maryland, deafness is not a disability in those locations.

And that’s because disability is a social construct. It’s not the lack of hearing that makes a disability. It is a lack of an accessible society that makes a disability. Like for my son, with his ADHD, just having ADHD does not mean you have a disability, but being forced to function in a highly structured setting that your brain just doesn’t process things the same way, is what creates the disability. 

So I absolutely understand the perspective of people who say, I don’t consider myself disabled, I don’t consider this a disability and I absolutely get that. I also think that we need to get away from disability being a negative term. It just means you’re not able to do something or that it just takes a lot more energy for you to do something and that’s not a bad thing. You know, I absolutely respect if somebody doesn’t want to say that they’re disabled. That’s fine. I will respect that. I will use whatever terminology you prefer me to use for you, but I don’t have a problem saying my son has a disability and some people are like ADHD is not a disability, food allergies aren’t a disability, and I’m like “his body literally cannot eat eggs. He is not able. That’s a disability.” 

But we have this society where now, food allergies aren’t as much of a disability because we have labeling laws and it’s just more well known, and so I think that’s what is so great about universal design is that it is a way to minimize the actual number of disabilities without having to go through medical cures or whatever, trying to like treat things with medicine. If we just make things accessible to everybody then people don’t have a disability anymore.

LS:

And more on that point about who gets to decide what a disability is, I would say is the person themselves.

BH:

At a young age, the parents.

LS:

And then that’s where it gets tricky but then you’re talking also about disability as an assistant, how that then becomes legal. So then, that is literally the definition: like if you’re going to be on disability or not, so I get how the same term can be used in different contexts, but can also lead to confusion about that. I think you’re talking more about the social and identity concept. 

BH:

Yeah, but at the same time, I think it doesn’t matter from a legal sense, because there are, I think, a lot of people who don’t know what their rights are, because they don’t want to accept that they have a disability. They don’t look into what disability rights are and they may not be receiving services or getting assistance that they could legitimately need because it’s a pride thing and so I just think, reducing the stigma around disabilities is so important. 

LS: Yes, and I also, also about cultural things.

BH:

Yes. 

LS:

And when I say that I mean pretty much like lots and lots of culture, that no one has like, no one takes the door on stigma but especially our society, I don’t know, traditional or whatnot, but actually, I had this experience myself, and when I was in college and undergrad and I had several friends in the class. It was like my first time ever having friends whose parents were Indian teaching me about Indian culture, even though she was like “no, no. I’m American.” I was like, “Right, but tell me more.” I grew up in an orthodox religious girls’ school. I didn’t even go to school with boys, let alone people who were not Jewish.

 So, to me, college was a very interesting and important experience, but I also think that if you take that into the idea of disabilities, another one of those friends, it was the first time that she ever had hearing aids was in college, because all throughout her schooling, the family was crazy about it and a lot of stigma in the community. But now it was like, okay, first of all, you’re an adult so you start being your own person and you’re getting educated so you learn what your rights are, and there’s the Office of Disabilities or I think many places are now changing it to Office of Accommodations. 

BH: 

Yes.

LS: 

I’ve heard that expression change. 

BH: 

So, just this morning, I read something. It wasn’t put out by Hands and Voices but they shared it on their Facebook page. It was about the concurrence of autism and hearing loss and a lot of what it was talking about is sometimes especially with, like, mild or moderate hearing losses, you may associate the quote-unquote symptoms of the hearing loss as being related to autism or the reverse – a child is diagnosed with a hearing loss and so we don’t recognize the autistic traits, and what this article said is having a delay in receiving both diagnoses can delay getting critical services, critical language, and communication services. 

And I had this thought. “This is where universal design really helps out because it catches the kids who fall through the cracks. If we have sound field systems in every classroom, then, if a kid’s hearing loss isn’t diagnosed or if their sensory processing isn’t diagnosed or their auditory processing isn’t diagnosed, they’re still receiving that service, that benefit, even though they don’t have a diagnosis.

And that lack of diagnosis can also be cultural. I have seen lots of families who refuse to go through the evaluation process just because they don’t want the label and we get hung up on the labels. But yeah, universal design because everybody can use it, regardless of whether you have a formal diagnosis of a disability or not, means that there are tons of people out there who maybe are slipping through the cracks, maybe don’t have that formal diagnosis, but they’re still receiving that benefit and they’re still getting services or accessibility that they need that way. 

LS:

Yeah, and that reminds me of what happened with the pandemic. All of a sudden everyone was working from home and all this stuff and then disability advocates were saying you could have done that this whole time. You just didn’t want to. Like, you had all the resources. You had all the technology. You know how to do virtual conferences and how to do all that stuff. 

And the other thing that came to mind as you’re talking is universal newborn hearing screening. The fact that you’re going to screen every single baby to catch the three in 1000. That’s good news, like, and that also really makes a difference for those first two, three years, so that it’s caught at infancy.

BH:
And going back to the pandemic and also I know a lot of deaf advocates were talking about how hearing people were saying, “oh man, I have zoom fatigue from being on the computer all day.” They’re like, this is why we’ve been telling you that virtual interpreters is not a preferred mode of communication for us because I know a lot of doctors offices or a lot of service providers have gone to remote interpreting, where they deal in a computer or a TV, and the interpreter is on the screen and that’s a lot more strain on the deaf person than seeing somebody, an interpreter in real life, and sometimes it’s better than nothing, but, you know, deaf people have been saying for a long time now that this is not our preferred mode. You really need to get somebody in person in here. And then, it’s when the non-disabled community gets impacted and sees the effects, it’s like, “oh I get it now” but we shouldn’t need to experience it firsthand, we should just be listening to their experience and what they’re saying. 

And so often we rely on the quote-unquote experts to tell us who are often not the people who are living with this 24/7. Again, I say all this as a hearing person.

LS:

Yeah, I mean even in the beginning when I first started I was like “okay I’m gonna have a podcast about audiology, I’m certainly going to have transcriptions” automatically. But here’s the selfish part because what it does, if you have a transcript, I guess it’s good for your SEO for your search engine optimization.

It means that people who don’t want to listen, or like want to just scroll and skim, they do that and I can already have all my quotes. I started from the accessibility point but actually, it’s benefiting me and other people in many ways, which we’re saying it’s like not a bad thing.

BH:

 I think that’s exactly the point and for you putting the transcript in there was because you wanted accessibility. You wanted to make sure people could access it. Not everybody is as altruistic.

LS:

I think I’m just aware because of the field that I’m in. 

BH:

Exactly, but a lot of people just aren’t aware, and I think the pandemic has really shown this, but if it doesn’t benefit me, then I’m not going to do it, or I don’t want to have anything to do with it. 

So seeing that universal design does not just benefit people with disabilities, or you know women who are wearing skirts or anything, that it benefits everybody. I think it is important for getting the message out there and making things more accessible. There are people out there who aren’t going to do it unless it benefits them. 

LS:

I’m telling you I feel fired up. I feel very happy that we had this conversation and that the conversation will continue. Anyone who’s listening or who wants to send in places where we can be better, we can improve, educate us. I think there’s a fear that talking about this then you have to be perfect or something, and you will have to know everything like from day one, but learning is a good growth mindset to have that you can be open to hearing criticism, and also be able to give it as well. Like to say, recently, I’ve been noticing – like you said before – about your speech about various terms that we use.

And semantics are a whole other thing that we can go into because that’s cultural and regional, but now you’re like on the internet, everybody hears everything all the time. 

BH:

Right. 

LS:

So, for example, if you say like, “Wow, that’s crazy” just like about a story that someone said, do you stop using the word crazy in that context? Is that ablest, is that mental illness? And that one I think is a really tough one for people to even, like, look at and examine. Oh, the other one was like that, that one is like, we really don’t want that, like, do you really mean that, or is it just an expression? But at what point does language change with the times?

BH:

I know. And I think that’s totally valid and the truth is that I don’t have the answer, but I think it’s important to go and listen again to what people with disabilities are gonna say. Along those same lines of what you just said, I was watching a YouTube series. I think it was done by BBC. Everybody was British. But they do these kinds of interviews where they take people, not always with disabilities, just people who have differences of whatever type, and they have them talk about things that bother them. 

Like, they have this bucket full of like little slips of paper that have common things that people say to you, and how do you feel about that and one of the ones in a similar vein to what you were just saying, was people who were blind, and it said, “how do you feel when somebody says, ‘See you later?’ Oops, sorry,” because thinking that a blind person would be offended that you use the word see. They were like, “No, I’m not sensitive about that.” Maybe somebody out there is, but everybody who was interviewed on this YouTube video – I’ll have to find it – was saying, “No, it’s fine, you can use the word see.” 

We talk about listening to deaf people or listening to disabled voices – and it’s not actually listening, necessarily. It could be looking. It’s not necessarily their voices, per se, in terms of the physical use of the voice box and speech – but seeing what they’re writing, seeing what they’re signing if they’re using ASL, or listening to what pictures they’re pointing to if they’re using AAC. So we use the word listen but it doesn’t actually mean listening with your ears, and yeah, language is trippy and I think that’s just why we need to have more conversations to see what people prefer and what people would like us to use. 

LS:

Yeah, I think also a common one is in statements and then things that people will say “wow that was really a tone-deaf thing to say” like you’re not listening. They’re actually using an expression that might be offensive to deaf people because they say tone-deaf as a negative thing. Does that implicate anybody?

But then like you said the other expression, like would you not say that something was eye-opening? but you use the expression eye-opening.

BH:

There’s no simple answer to it. And again, it just comes down to having conversations with people and seeing, because I do think that there are tons of examples where people get worked up over nothing. We have to default to what is the person with a disability or what does the person who could potentially be offended by this think? Because I think so many times, especially those of us who do not identify as disabled or do not identify with a specific disability, are quick to call people out on stuff and no, just calm down, it’s really not that bad. 

LS:

But the last thing I’m just thinking of is also the difference between a reclamation of a word that people will say about themselves, versus other people talking about them. 

BH:

Absolutely. 

LS:

There’s that element, too. So consider this, dear podcast listeners, supporters, as an invitation to have conversations. So you can always message me on Instagram or through my website. And I’m sure, Becky now wants to have the conversation, too, right?

BH: 

Absolutely. I love it because I don’t want to be a non-disabled person blogging about things with disabilities without having disability perspectives. 

LS:

So, yeah, we each have so much to contribute, and I think it’s incredible that you’re putting out so many great resources, great content. I will call on you. Any last words of advice for people listening, students or parents, professionals, everyone?

BH: 

It’s okay to make mistakes and more importantly it is okay to learn and you should always be trying to learn and grow and learn from your own experiences and then share your experiences with others. Because nobody’s going to grow if we hold on to things on our own. 

LS:

I love that as a way to wrap up this amazing episode. Thanks so much for coming on the show. 

Thank you Becky Hale from inthewrongstory.com. Thank you for being a listener and supporter of the All About Audiology Podcast. We have some really fun guests coming up, as well, so stay tuned and join the email list, as well, to get updates on upcoming episodes. Anything else, get in touch at allaboutaudiology.com. Thank you so much.