Growing up deaf in a hearing family creates a unique identity challenge where individuals must navigate between two worlds without shared language, often facing pressure to 'fit in' and being told their disability is a burden. The journey involves discovering American Sign Language (ASL) as a lifeline to community and authentic communication, while also making personal decisions about cochlear implants that may conflict with family expectations. This experience highlights the importance of understanding Deaf culture, recognizing that disability identity is personal and complex, and that disabled individuals deserve to embrace their identity rather than seek a 'cure' that would require them to lose their unique perspective and community connections.
What It’s Really Like Growing Up Deaf in a Hearing Family
Added:Could you imagine growing up in a home where you didn't share the same language as your family, then going to school and realizing that you didn't share the same language with your classmates either?
Imagine trying to access an education, build meaningful friendships, or simply express who you are when communication itself is the barrier.
That was the reality for today's guest, Chrissy Marshall.
Welcome to What It's Really Like.
I'm your host, Molly Burke.
This is the show where we go beyond assumptions and have honest conversations with people whose lived experiences challenge the way we see the world.
Because when we understand each other better, we build compassion, bridge divides, and realize that we have more in common than we think.
Chrissy was born deaf into a hearing family who didn't know American Sign Language.
She was also mainstreamed in school, meaning that she wasn't surrounded by deaf culture or other deaf students.
In this conversation, we talk about what it was really like growing up between two worlds, how discovering ASL changed her life, her decision to receive a cochlear implant as an adult, and how she's now helping to shape the entertainment industry as a director.
Before we dive in, I want to share a quick note for our listeners.
This is our first episode featuring an ASL interpreter.
To ensure that the translation was accurate, we had the interpreter rerecord some of the audio in post-production.
This was a really valuable learning lesson for myself and my team.
We are fully self-producing this, so we're truly like learning as we go.
And different people have different access needs that I, as a blind person, am not used to, but this has been such an interesting learning experience and I'm really committed to continuing to try to make episodes more accessible for both my guests and my listeners.
So thank you for being patient and sticking with us.
So I just want to give you guys the heads-up so that when you hear that shift in audio, you're not surprised.
Anyways, Chrissy is just so electric.
This conversation was incredibly thought-provoking and I know you're going to love it.
So let's get into what it's really like.
I recently saw a comment on one of these episodes and they were like, "Molly knows the coolest people and I concur.
I do. And I'm so lucky that the series has allowed me to introduce you to so many of them.
And today is no exception.
We have Ms. Chrissy Marshall in the building.
Chrissy, thank you for coming.
And for those who don't know, who is Chrissy Marshall?
Well, hello. I am Chrissy Marshall.
I will start with a visual description of myself.
I'm a white woman with blonde hair.
I'm wearing a white shirt and a polka dotted black and white skirt.
And I'm speaking through an ASL interpreter today.
And I'm using American sign language.
And also a little about me, Chrissy Marshall.
I would describe myself as a very creative, empathetic, motivated, passionate individual.
Love working with people.
I'm also very curious, love learning new things.
And with all of that, I just happen to be deaf.
I'm really excited to have you on the show because you're my first guest who's deaf or hard of hearing.
And I know that I have faced so many questions over the years about like, can a blind person and a deaf person be friends?
How can blind people and deaf people communicate?
Because of course, like we have the exact opposite experience.
We both live with sensory disabilities, but they're completely different, right?
So it's like I see the world mostly through the way I hear it and of course touch it.
And for you, you experience it so much through your visuals.
And so it's really interesting that I've known many deaf people and I've had many deaf friends over the years.
And so I always think it's funny when people ask me, can blind people and deaf people be friends and how would that dynamic even work?
So it's exciting to me that I get to, for the first time, share one of these friendships and dynamics and show people how there's workarounds and accommodations that can be made for anything really.
Absolutely. Disabled people are experts at adapting.
Can you tell me about your childhood?
What was it like for you growing up and being diagnosed with hearing loss?
Yeah, 100%. So I was born into a hearing family with three sisters, loving parents, beautiful family.
They were all hearing. And when I was born, my mom recognized that I wasn't responding to sounds.
So I wasn't creating my own sounds.
I wasn't cooing or babbling or anything like that.
And that was something that was constant for about two or three years.
Keep in mind, I had three older siblings.
So I was the youngest of, of four and my parents were still taking care of my other siblings as well.
And so slowly but surely again, my parents started to recognize, okay, this is a bit of an issue.
And my neighbor who was the same age, he was actually speaking about 200 words at that time.
And so in comparison to me, I hadn't learned any language yet.
And so that was a moment that really struck my mom.
And she said, "Okay, I've got to do something about this.
" And so I went and they did the BERA test as well as a CAT scan.
And the doctors noticed and found that I have EVA as well as Mondini syndrome.
And Mondini syndrome means that the cochlea in the ear, it should be shaped kind of like a shell that makes about two and a half turns, but mine is malformed and it, it doesn't make those particular loops.
And in addition to that the aqueduct in my ear is also too big, which so slowly causes cells to die and disintegrate.
And so I was born with a severe hearing loss and I wasn't able to hear or speak or make sounds at all.
And yeah, utilizing hearing aids, I tried.
I started speech therapy at the age of two and a half.
And I worked really hard learning and studying the various movements of the mouth that create sound, learning how to push air out of my mouth to produce certain sounds.
So it was a very technical training in relation to where and how to kind of feel the movement of speech, gauging volume and all of that.
I also learned a lot about lip reading and how to recognize various letters.
So I would stare at people's lips.
B, P, and M, they look exactly the same on someone's mouth.
And so if you were to say mall or ball, I'd, for example, try it now. Mall or ball?
Mall. Ball. Yeah, they look exactly the same to me.
So interesting.
Yeah. So it's impossible to see the difference.
And So you know, I had, I studied really in-depth speech therapy and lip reading and I was also mainstreamed So I was I went to a hearing school.
I had an IEP, an individual education plan.
And people who were advocating on my behalf in my educational journey captions were a part of that.
Sitting in the front, having supports aids in my classrooms.
All of that was a part of those IEPs.
But when you say childhood and to talk about my childhood in looking back, it was a lot of catching up that I was trying to do.
And especially in relation to language and summer school.
The special education teacher who was teaching me sign when my family... Well, let me say this too. My family doesn't sign.
And so there was just, there's a, a lot of to unpack there, I will say. But yeah.
And we will get into as much of it as we can cover.
I feel like just from your initial answer, there's so much in my own childhood journey that I completely relate to.
You know, I had an older brother who was sighted.
My parents are both sighted.
And so getting that diagnosis wasn't something that happened immediately.
And it was other people kind of pointing things out to my parents and being like, "Hey, look at that.
That's unusual. You should get that looked into." Because I think parents are so busy.
Like especially when the youngest child is the one who's disabled.
It's, they're so busy with just raising their kids and keeping their head above water at work and clean and cook and all of these things that it's like you need outside eyes looking in to kind of recognize that, hey, your child isn't hitting certain milestones or that behavior they've developed is unusual compared to other kids their age.
And so it was a very similar experience for my parents.
And I actually even had little things like I had a speech impediment for most of my childhood and my parents, they'll hear videos of me talking as a kid now and they're like, "Oh my God, I don't know how we never even heard it, but we were so busy dealing with like all of your things that that was just like so low on our priority list.
We didn't even notice even though other kids would make fun of me for it.
Like they didn't even clock it.
And then it wasn't until I got a vocal cord injury at 15 and went to speech therapy that I ended up getting my speech impediment corrected through that.
But it's like very interesting.
So I completely relate to your parents kind of being so busy and not even noticing until they look at other kids that age and go, oh wait, something is different.
And - Yes, exactly. Yes.
That's why I wanted to share the story actually because you know, I love and respect my family very much.
There are a lot of nuances to that though, Right?
Yes. And to being the only disabled person in a family of non-disabled people is a very different lived experience to say a deaf or blind child in a household or a family where there are deaf or blind people, right?
Like that lived experience going to completely differ.
And the other thing that really struck me was you talking about how technical speech therapy was and about how a lot of those sounds that we think of as being just natural, and inherent to the human-baby experience, the babbling and the cooing or learning air pushing through the mouth.
Like it's not actually as instinctual as we think it is.
And that's very similar for blind children with things like body language and facial expression.
Blind children, those who are born completely blind, have to be taught a lot of those things.
They have to be taught how to make facial expressions.
They have to be taught to wave.
They have to be taught that you turn and you look at the person who's speaking to you.
And what's really interesting for me about all of that, and I'm curious your take on kind of learning a lot of these things, is that we're essentially teaching deaf children and blind children that the way that they naturally are isn't right and that they must change their natural way of living to fit the rest of society, that blind children must make the same body language, must make the same facial expression, that a deaf child must vocalize or must do things to fit the rest of the world.
I'm curious your take on that because it's something that I've kind of battled in seeing blind children being taught to fit a sighted world.
But at the same time, I understand that at the end of the day, we as disabled people do get judged when we don't fit society, that we do get discriminated against more, that we face more ableism when we don't fit certain expectations or standards.
Oh, yeah. My whole life, people have praised me when I don't seem deaf.
You know? It's celebrated.
Yes. It's weird. I feel the complete same way.
Like,I have spent so much of my life being praised for not looking blind, for not acting blind.
And it's, it's such a weird thing because what's wrong with looking or acting blind?
But when you say, "Oh my gosh, but you don't look this way or you don't act that way, I would've never known."
You're like praising me for fitting your standards or your world.
When you guys make very little effort to accommodate me or to fit my world, like I feel like I'm constantly trying to wedge myself into a sighted world and meet their expectations to be accepted or to get opportunity.
And I, I hate that.
Yeah. People say communication should be fifty fifty, right?
But typically deaf individuals, it's 100% on them to facilitate the communication and it's their full effort.
I also think about children, deaf children specifically, you know, when it comes to hearing loss.
You don't have any idea of really how loud you are.
And so you become perceived as disruptive and annoying and labeled in all these different ways when it's just something you don't realize.
You think that you're trying to fit into this normal society.
But the fact that you're loud and the fact it's just perceived in a negative way.
I like literally again, like I can relate to that so much because something that's very common for blind people is that we either speak too loudly or too quietly because we don't know if somebody can hear us, right?
Like I can't see when you, when I'm talking with somebody if they're engaged.
And so sometimes I'll speak really loudly assuming that somebody's further away from me than they are or that they're not hearing me because so much of communication is visual.
It's seeing that they're nodding or they're leaning forward or they're making facial expressions.
And so I tend to speak too loudly.
A lot of blind people tend to speak too quietly.
It goes one way or the other.
And I'll be perceived as like obnoxious or loud when really I'm doing it because I don't know if you hear me and I don't know if you're engaged in the conversation.
And I often also accidentally cut people off.
And I've had, I've had comments my whole career on social media when I'm doing videos with other people about me cutting them off mid-conversation and I don't mean to, but I can't see when somebody else is about to start to speak.
These are very visual things that sighted people can pick up on that I don't.
And it's so frustrating for those of us with sensory disabilities that change communication for us that other people can't empathize or can't try to understand how not hearing or not seeing would inherently change our ability to communicate in certain ways.
Oh, 100%. I mean, if I were relying on an interpreter and live captions and you happen to see that accessibility, you think, okay, I'm understanding everything perfectly.
But often I don't know who's actually speaking in the room, especially if there's numerous people speaking at the same time.
So I like to use live captions in an app.
Literally it'll show the period as, okay, that's the end of the sentence.
So I'm assuming that they're done.
And eventually I have misinterpreted that numerous times and interrupted or, you know, things like that.
It's not intentional at all, but often people will think that I'm ignoring them or they just don't have any idea that I'm deaf.
That response or lack of response is often perceived as rude.
And that's the thing, like blindness and deafness can both often be invisible disabilities.
They're often things that people can't see.
And so they don't necessarily look at us and immediately clock that we're disabled or that we might need accommodations and access.
And it forces us to bare the burden of needing to advocate even more. Because we need first of all to explain that we are disabled and then we have to explain what we need and why we need it.
And then we're treated like we're lucky if they provide that access to us.
Oh, yeah. 100%.
I mean, also, I'm at a point in my life where I'm reflecting about middle school, as that had a big impact on me, because I needed an interpreter.
I really did, but I didn't want to use one.
I didn't want my disability to become this visible display, you know?
So I would use interpreters very intermittently.
I was so embarrassed.
I didn't even know how to, you know, interact with the interpreter or advocate for myself in that way for my own communication.
So that was a challenge for me.
I would've rather failed my education and failed my courses than be seen that way.
I predominantly also grew up mainstreamed.
So I also grew up in just sighted schools.
I did go to a school for the blind for two years.
I went for grade nine and 10.
And that was my only experience where I was in an education system where all the other students were blind or visually impaired and all of the teachers knew braille and, you know, there was accommodations made that was standard.
But for the most part, I was mainstreamed.
So I also had an IEP and I also had a full-time, educational assistant with me in the classroom at all times.
So I had fifty fifty support, which meant that 50% of the time I had an educational assistant or EA in the room.
And then 50% of the time I had a vision itinerant in the room.
I grew up in Canada, so those are the Canadian terms.
I'm not sure what they're called in the US.
But it was, for me, I struggled socially.
And I'm curious for you about struggling socially, if that was a part of things for you.
Like school was hell for me because not only is the educational system typically designed for very visual learning.
It's, it's very, they're writing on the board.
We're flipping through textbooks, like none of which I can be a part of.
And then I'm also feeling alienated socially and struggled a lot with bullying.
I moved schools a lot because I was very obviously different from my peers.
I had all of this different equipment on my desk.
I was in the back of the room with an adult sitting next to me instead of a peer.
And it just like constantly made me feel like I wasn't a part of anything.
And it was really tough for me.
I'm curious what it was like for you in that way.
Well starting with hearing aids in elementary school, I had an FM system.
And technology has come a long way, let me tell you. Yes.
But back in the day it was a really large system that I had to wear it on my chest.
It connected via this really bulky electronic piece, I shit you not.
It was, it had these antennas that came out of them.
And so from grade two to four, I had to wear this FM system with these little alien antennas.
And people would literally call me alien, bug, robot all the names.
And like I said, technology has come a long way.
We've improved in quite a number of ways, but in middle school again, I had to utilize an FM system and it was so heavy.
It was so bulky. I hated it.
And so I just decided I'm not doing it anymore.
And it was complicated also because hearing aids make things louder and they often have feedback, which is like a ringing noise that's like a, yeah.
It's very loud. I can't hear it.
And when that happens, imagine being in school, it is very disruptive to a classroom just to hear that noise.
And that would happen so much. So it was embarrassing.
It was tough. And in terms of my hearing loss, it started very severe.
And then I became profoundly deaf and I lost any residual hearing that I had.
From elementary school to high school, that was a, a very slow and gradual hearing loss.
On paper, there's a small discrepancy.
But in life, having that security of having a little bit of hearing left to all of a sudden being profoundly deaf.
Ooh. I really spiraled in high school.
Deep, dark depression.
I didn't know how to be myself anymore.
I feel like I lost myself. I lost my identity.
I was so embarrassed.
And especially being young, you know, high school and college age, a lot of things happen at night, right?
Parties and you're going out and that means that it's dark and I can't hear and I rely on my vision for communication.
And so it was really a heavy time for me.
A lot to learn. And I will say I'm so grateful for the deaf community.
Truly, they saved me, saved my life more than once.
Again, I unfortunately feel like I can relate so much to that.
Like I lost the majority of my vision at 14 and I also struggled with severe depression and suicidal ideation and I like really became a shell of myself.
Like I feel like I lost myself.
I had to mourn the loss of the person I thought I was and like rediscover this whole new life and this whole new version of me.
And I, you know, I've done a lot of therapy on and off over the years.
I was speaking with a therapist a couple of years ago who has the same condition as me.
And like all I have left now is some light and shadow perception.
So I'm like functionally completely blind, but I have light and shadow perception, which for me is very comforting.
It brings me a lot of comfort that I can see something, but I will likely in my lifetime lose that.
And she said to me like, "The hardest part for people with my disease is usually actually losing the light and shadow perception.
Like even though to the rest of society, you're already functionally blind and like it shouldn't matter that much.
Losing that little bit of something, that little bit of comfort that there is something you can see is so hard.
And so I completely understand when you say like on paper that little bit that you lost was not significant, but that for you, the impact still felt significant.
And I also think that given for both of us it happened around the same age, I feel like it is that age where you're in your early teens where you're kind of becoming a person separate from, from your family.
Like you're starting to discover who are you?
What are you like? And you're old enough to begin to look at the rest of the world and be like, oh wait, I'm different.
Like my lived experience from all of these other people around me is different.
And because of that difference, I'm not going to have the same opportunities.
I am limited. Like I will face barriers that none of these people have to deal with.
And they're dealing... Their biggest struggle right now is like their acne and getting their period, and oh my God, the guy they like doesn't like them and their best friend said a mean thing.
And I'm dealing with all of that, but also I'm dealing with the realization that I might not be able to have my dream job.
I might not be able to get an education the way these people are.
I might not even be able to date because people look at me and judge me and all of these like extra barriers.
And it's just like so huge having to deal with that.
And I know for me, like I completely understand going to parties at that age.
Like I, for me, most times parties are loud, right?
Like they're playing loud music and the only way I navigate is hearing.
And so all of a sudden I can't see anybody and I can't hear anybody over the music.
And everybody's yelling and I can't, I can't see when they're looking at me that they're talking to me and I also can't hear them.
And so I feel completely isolated in a room full of people because I can't see them to find them.
I can't see them to communicate with them.
And you want so badly to like have those normal teenaged experiences and then you try and it's uncomfortable.
And even more than uncomfortable, it's potentially dangerous.
Oh, yeah. Yeah.
I tried to pretend so much in those years of my life.
So as a deaf person, I don't think that most people have experienced this.
Sitting in a room, seeing all these mouths moving around you, people just talking and not being able to access any one of the, those conversations.
And it happens every day.
It's something you need to build your tolerance for as a deaf individual.
And starting with that, whew, that's pretty heavy and overwhelming.
We often say like one of the worst parts of blindness is the isolation you feel for that same reason.
It's like you can be in a room full of people and when 80 people or 100 people are talking, it's just noise.
Like you can't hear any of it and you can't see anyone.
And you'll walk into a party or to a work event and it's just like, it's just people everywhere.
And like the amount of times that I deal with people in like a group conversation and I'm trying to be included and I'm trying to involve myself and it's kind of why I've like developed such a loud outgoing personality is like I realize I have to be the one inserting myself because otherwise I'm just left out.
And like I would, I'll try to like talk to people and they'll literally just like walk away and not tell me and I'll keep talking to them and I don't know they've walked away.
And it's literally like so embarrassing.
Like I fel so much shame and embarrassment when that happens.
Like everybody else in that conversation is looking at me with pity and with like sadness like, "Oh, poor her.
Like how embarrassing." And so I, I get that feeling.
I feel like again, like having sensory disability, blindness and deafness, they're different, but there's so much... shared experience in that you have such a disconnect from communicating the same way so much of the rest of the world does.
Definitely. It's definitely not socially acceptable to say, "What?
What? What? More than what?
Once or twice?" People don't like it.
And so I've experienced that quite often too.
I've learned through just educating myself and advocacy and advocating for myself.
I will ask someone, "Okay if I can see your face, then I'm able to read your lips.
I also am able to use a captioning device on my phone where it'll hear the speech and then translate the captions and we can communicate directly in that Way." I remember like you just saying that about like saying what, what, what, not being socially acceptable.
Like when I was in grade five, this is like such a vivid memory for me for some reason.
I was asking another student a question and I kept asking the question.
And then she just snapped at me and like yelled the answer.
And I realized that the whole time she had been nodding her response.
And I assumed she wasn't hearing me ask the question, so I kept asking it.
Meanwhile, she's giving me visual answer.
And I say that like, "If you're using a visual language, you're speaking a language I don't understand.
Like you might as well be speaking Japanese to a native English speaker.
Like if all you're doing is nodding yes or shaking your head no, or all you're doing is giving me the thumbs up or waving and smiling and not saying hello, not saying that's good, not saying yes or no, I don't understand.
It's, you're not speaking to me.
Or if you're using words like over there or it's this, look at that.
That's gibberish to me.
You're not speaking a language that I can identify.
And it's so hard for the average person to understand that so I completely can like empathize with that feeling of just like people like not wanting to communicate with you in the ways that work for you and you having to do all the labor and how fatiguing that is.
Like I'm exhausted by the end of the day when I'm interacting with the world.
I am like, I need 10 hours of sleep for your eight because me doing all of this extra- like my, all my other senses, having to work overtime to live in a world that isn't built for me is so exhausting.
And I could imagine it feels the same being deaf.
Oh yeah. In our community we call it concentration fatigue.
And that is a shared experience amongst different communities.
Yeah. We always have to up the ante.
We have to, you know, increase our effort in just basic communication and that's exhausting.
And it's interesting growing up my parents would praise me and they would say, okay, look, you're going to have to work 10 times harder, you know?
And it's like, it's okay, that's great.
But yeah, in reality, if we're open about interactions and conversations about accessibility, then that burden can lighten up.
Right? And it becomes a shared responsibility when it comes to communication.
The amount of times I've heard the goddamn 10 times harder thing, and I internalize that so much and I, I realized like I have to work 10 times harder to maybe be seen as enough, to maybe be seen as reaching the average bar.
Like it's not like I'm trying 10 times harder to be seen as 10 times as good.
I'm trying 10 times harder to be seen maybe as equal, maybe as enough.
And when you internalize that and you feel like the bar is always so high, you exhaust yourself and you burn yourself out being such an overachiever just to feel like you're maybe skimming the bar of enough.
And it's so hard to live in that world.
And I can also imagine like how vulnerable vocalizing as somebody who can't hear your own words, like how vulnerable that must feel and the pressure you were put on as a child to vocalize instead of to use ASL.
I want to talk about your journey accessing ASL.
Because growing up in a hearing family, you know, it, it makes sense that when they've had no touchpoint with the deaf or hard of hearing community, their instinct is hearing aids, vocalized speech therapy, maybe, um, you know, a cochlear implant, like finding these ways to have you fit a family fit the world as we see so often in, in disability.
You know, I grew up in the cure culture of seeking treatment for my vision loss, seeking ways to allow me to use what vision I had instead of finding ways for me to work around it and find accommodations.
And so I'm curious what your journey was to finding ASL and what finally, like finding community and communication and language like that, like what, what that opened up for you?
Yeah, 100%. My, my parents definitely, I don't blame them but they had a medical perspective on my deafness and not a cultural or social perspective.
They were promised, "Hey, in five years, there'll be this STEM treatment that'll fix everything and she'll be fine."
Yep.
And so that's what they clung to and ASL was definitely not a priority.
I'm so privileged and grateful that my speech therapist taught me sign language.
And she noticed that I was struggling with my speech and ASL gave me light.
It gave me access. It gave me clarity.
And I really, I knew intuitively I did.
Every time that I saw sign language, I saw anyone sign or it just, it felt like that was meant for me.
And I was struggling in a world that was completely separate from that idea.
There's a burden that I always feel when I'm in hearing environments.
Entering a deaf space, having shared language, we all have a similar shared experience.
There's empathy within the space.
There's a level of understanding for one another.
And to be able to access any conversation in that room, that is powerful.
It's magical. It's something that I didn't experience growing up.
And I would say that I strongly believe that all deaf and hard of hearing people deserve to have access.
Even at the most basic level, having access to ASL is, is extremely important.
Technology can fail, right?
If you're underwater, if you're in a crowded environment, devices will not save you.
But ASL will. And that's something that I've learned slowly but surely.
I very much feel similarly to you about my parents.
Like I, they, they had a, a medical approach because that they didn't have any awareness of disability before my diagnosis.
And so like much of society, you default to the medical model because their first touchpoint is doctors who give us the diagnosis.
And I very much,like look at it in a nuanced way where it's like my parents did the best they could with what they were given.
I love my parents. They are my ride or die.
They are my best friends and my biggest supporters.
But yes, like some of the ways in which they approached my vision loss ultimately did hurt me, right?
Like the medical approach did deeply psychologically cause hardship for me and depression when I realized, wait, I am blind.
There is no cure that we've been promised.
And all I've been told by the medical world is being blind isn't good enough.
Like I must be sighted to be whole, to fit into society, to have a good life and reach my goals and dreams.
And so two things can be true.
Our parents can be incredible champions of us and do their best while still making choices that because they're not from our lived experience, you know, don't empower us the way that they could have if they had our same lived experience.
And I think that's why representation is so important because we're, we're in a different time now, right?
Like our parents, when we were growing up, didn't have access to representation and learning the way that thanks to social media and thanks to creators like you and me, parents do.
And it gives me so much hope how many parents reach out to me with blind children and say, "Because of you, I'm learning about X, Y, Z." And they'll, they'll message me and be like, "Hey, we're being told that they don't need to learn braille.
What do you think? " And I'm like, "Fight.
Fight for your child to learn braille.
Less than 10% of blind people learn braille.
And I feel the exact same way about it as you do about ASL.
I am so grateful that I got access to learning braille as soon as I was diagnosed.
I started learning braille at five years old and it is something I use every day.
And it is something no technology will ever replace.
I don't care how many apps can read the labels to me.
I want the autonomy of using my finger to read, to access information myself.
Braille gives blind children literacy in a way that just hearing things never will, because guess what?
I can't hear a period. I can't hear a comma.
I can't hear when a word is spelled in a way that isn't phonetic, right?
So we need braille to empower blind children to have literacy and independence and autonomy when your phone dies and you can't open that app.
When your hands are wet and you're in the shower and you can't use your smart glasses, we need kids having access to braille the same way we need deaf children having access to ASL.
This is our language.
And I almost think of it like interracial adoption, you know, the idea of say a white couple adopting a child from China or from Africa who have different racial and cultural backgrounds that they don't understand.
I do think it's important that, that those white parents from North America or that non-deaf or non-blind parents of deaf and blind children, I do think they have a responsibility to learn about that culture and to empower their child to have access to that culture even if they themselves don't come from it.
Because robbing us of our culture robs us of community and robs of us of so, so much more.
And I wonder being a deaf person and a hearing family who was mainstreamed in school, when did you meet your first deaf person?
When did you have your first deaf friend who you felt truly understood you?
Wow. There were several points growing up where I really wished I just had better language skills in general, you know, just to be able to have connected both with the hearing, hearing students and kids and deaf kids as well.
Yeah. And I feel like I kind of straddled both worlds and lost out on both sides.
Plummet or - something that we talk about a lot.
Feeling like in the blind community too is when you, you're not completely blind, you're not completely able to see, you feel like you don't connect with the blind community, but you also don't connect to the sighted world.
And so you're kind of like floating in between and not really feeling like you have any sense of belonging in either direction, which was definitely me before I lost the majority of my vision.
Like I felt like, well, I'm not quite this, but I'm not quite that.
And I could absolutely imagine that you don't share the same language as hearing people, but you also don't have ASL.
And so you're somewhere in between and not feeling like you're fully able to form complete communication and relationships on, on either side.
And for those listening who aren't aware, CODA means kids of deaf adults.
And I'm, I'm interested to know as your family didn't know ASL, what did communication look like within your home with your siblings and your parents?
It was difficult. I continued to try to lip read and follow their conversations in that way.
And that's just what I did.
At our dinner table, that was really tough.
Often I would completely not understand anything that was going on, any of the conversation.
At the same time, I was still trying my best.
I never fully resigned myself, you know, to trying to communicate.
I just tried to fit all the puzzle pieces in that I could when it came to those conversations.
When we're talking about representation too, just to go back for a moment, in middle school, I remember it was a tough day.
I had come home, I was crying, and I was crying to my mom and let her know that I had been bullied and picked on because of my voice.
And we sat down together.
She opened up her computer and she started searching.
And she was searching for videos of Marlee Matlin.
And I want to say it was for at least an hour, literally searching, trying to find something.
And in that moment, when that video popped up, I felt a connection.
And I wanted that.
I craved that to see someone else signing and to see someone else communicating.
So that was a really pivotal moment for me and was such an inspiring moment when I became a filmmaker.
I think we all have that moment growing up when we don't feel represented within our family, in our school, in our community.
When we, when we see somebody, something that makes us feel like we're not alone.
And funny enough, Marlee Matlin was one of the first for me too, because even though she wasn't blind, like I was like, "Oh, there's, there's somebody in media who like isn't like everybody else.
Like they have something that's different and they're still doing it.
" And I remember seeing that as a child and this sounds really bizarre.
But I remember when I went blind, I was like, "I wish I could be deaf instead because they have such a beautiful culture and community that I didn't feel I could find.
And I like struggled so much to find it in the blind community.
And I have always taken so much inspiration from the deaf community.
I feel that they've been so far ahead of the rest of disability in terms of their view of, of their deafness.
And I've though it was so beautiful.
Like I had never, I hadn't seen anyone yet who was proud to be blind, who was happy being blind, who was like, " I wouldn't change being blind.
This is who I am and I love it.
"I hadn't, I hadn't seen that.
It's not that it didn't exist, but I certainly did not see it.
And I remember seeing people like Marlee and the deaf community and how strong they were in their conviction that like we have this beautiful culture and this language and like we are enough as we are.
And who are you to say that our lived experience isn't good enough?
And I just like found that so inspiring and it was a big thing for me learning about deaf culture to be like, how can I take that and use that energy?
Like how can I learn to love blindness?
How can I learn to be proud of my blindness and to hopefully create a space where other blind people can feel that, like can come together and be like, no, we're enough as we are.
And like who are the rest of you to say that we need to change to be sighted to be good enough?
Yeah. If we lived in a perfect world, the deaf community could operate as a linguistic minority.
But we also have shared experiences with other people with disabilities.
And going back to Marlee, I mean, she really broke down a lot of those barriers for me in seeing her.
And I'm so grateful that I exist at this time now where I'm able to see that.
And growing up, I remember very clearly, I think it was Netflix, maybe 2016, Netflix had started providing captioning on all of their videos.
Prior to that, let me tell you, most content and media, you would try to watch it.
I would try to watch it and I just couldn't understand.
Marlee, I know she has been a huge advocate and has influenced a lot of the changes that we see in, in captioning today.
So very grateful for that.
What's so funny is that Netflix was also like the first kind of big platform to start offering audio description as well, probably around the same time, the same time.
And it just opened up a whole world of entertainment to me that like after I went blind, I, I grew up wanting to be an actress.
Like I loved watching TV and movies growing up.
And then the moment I lost the majority of my vision at 14, I, I felt like I lost the ability to enjoy media because there was so many visuals that I was missing.
I can remember in high school, the show Pretty Little Liars was really popular.
And every episode would like hinge on the context of a text message that they would put on screen and nobody would ever read the damn text message out loud.
So the whole context was lost to me for the full episode.
And there was a damn blind girl in the show played by a sighted actress, of course, obviously.
And so I was like, I want to watch it even more because there's some level of representation, but I can't, I, I would try and I would try to watch it and I would just be lost.
And then I would go to school and all these girls would be talking about it.
And I would lose the ability to connect with my peers over pop culture and media.
And then when Netflix started doing audio description, I was like, this whole world of watching movies and TV shows has opened back up to me.
And I, I feel like there's still like about 10 years of media at least that like if you bring up that 10 years of movies and TV shows that were popular, like I haven't seen it and I probably don't know anything about it.
And I still, like, people will bring something up and I, I'll be like, "Oh, I never watched it.
" Because it, it just never had audio description. Yeah.
And some, some backlog, like some back catalog has gotten audio description applied to it, but a lot still hasn't.
So sometimes I'll still go to watch a show from back then.
I'll be like, "Nope, still no audio description.
Still can't watch it. Still can't enjoy it. " And - Yeah.
So I totally, I totally feel you on that.
Yeah. Molly, did you know that now 80% of Gen Z prefers to watch with captions?.
It's like the curb cut effect is what we call that, right?
Yes. Once you have increased accessibility in various ways, more people want to use it.
And hopefully that will apply for audio description too in The future.
Well, Do you know what's funny? Like I think of audio description as having so many applications outside of blind people.
Like the idea of somebody cooking in the kitchen.
Like my, my fiance and I, my, he's sighted and we'll watch TV while he cooks, but we have a wall between so he can't see it.
And he can keep up with the show because the audio description's on.
Or if you want to like be cleaning the house and folding laundry and like living your life while watching a show, you still can.
And it's funny because he's so used to having audio description on now and it's just like auto set to be on all the time on all the platforms for us.
They're like, "He'll be watching his own show.
I'm not even in the room. I'm not watching it.
It's not something I'm interested.
I'm doing my own thing." And I, I'm hearing it with audio description in the living room because he's like, "It doesn't take away from anything.
Like why would I turn it off? It doesn't distract me.
It doesn't... I don't even notice it's there.
And if anything, if I want to get up and grab a snack in the kitchen, I don't have to pause it because I can keep up with what's happening." Or you can even like notice things you might have missed if you were just watching it.
So I do think that curb cut phenomenon, like there's so many ways in which, you know, designing for everybody improves things for everybody.
My, my sister-in-law is French.
She's from France, and so English is her second language.
And when we're hanging out at Christmas and we're watching Christmas movies, we always have the audio description on for me and the captions on for her because reading the English captions easier for her than just listening to the English.
Yeah. Yeah, yeah, yeah.
And it benefits a lot of neurodivergent people too.
I mean, yeah. And I do want to go back again.
And people ask me all the time, would I rather be deaf than blind?
It's, it's an opinion people just unsolicitedly throw out.
And it's weird. People express this all of the time.
You know, I wonder if people try and raise this conversation to you.
Yeah, for me, when I say it, I mean it because of the culture around deafness.
Like I admired that so much and I, I like craved having some level of community like that and some level of like culture because I didn't feel there was any blind culture the way there was deaf culture.
And I really like loved that.
People love to tell me they'd rather die than be blind.
I get that one a lot, which is always a weird thing to... Like how do you want me to respond to you telling me that you would rather be not alive than live like me?
It's like such a weird comment.
But yeah, people do love to like compare different versions of lived experience, right?
Like be like, oh, it would be easier to live like this than like that or things like that.
And I definitely do often have people tell me they think blindness would be the worst disability.
Like that's the thing they would want the least.
Like if they had a gun to their head and they had to pick a disability with a magic wand, the blindness is what they would want the least.
Yeah. I've experienced a few times in my life group discussions actually where people notice that I'm deaf.
And then they bring up and they'll ask everyone, "Would you rather be deaf or blind?" Like it was an option for me.
Like what? Yep. It, you know?
Yeah, it's just interesting that that would even be a discussion point.
Why is it brought up? But yeah.
I know neither of us chose this.
And it's, we don't have an option to reverse it either.
So it's like really interesting. Yeah.
Yeah. And then also a comment that I also get is if you can't hear music, if I couldn't hear music, excuse me, then I would rather die. That's something that I hear often.
I Feel like non-disabled people, they're so used to living the way that they do, that they can't imagine a version of life that looks any different from their version of normal.
And for me, being so entrenched in disability for so long and having so many friends now with different lived experiences, it's like I, I remember I, you know, my school for the blind that I went to, we had a deaf-blind unit.
And so one of my friends in high school was deaf-blind.
And he had profound hearing loss and he loved music.
And that was the first time that I had exposure to a deaf person loving music.
And we would bond over like our favorite bands.
We had a very similar taste in like alternative rock music.
And I remember asking him like, "Wait, like how do you enjoy music?
Like what about this band do you like?
Because this is what I like about them." And he would tell me like, "Well, I, you know, I look up the lyrics so I like reading the lyrics like it's poetry and I, I like them because I relate to this band's lyrics.
And I also like can turn the volume up really loud and I feel the vibrations and I like the, the vibrations of this beat that they make." And, and it was so eye-opening for lack of a better term for me to, to realize like there truly is so many ways to experience the world.
Like just because music for you is different than the way I experience music does not mean the way you experience music is less valid or less valuable or less enjoyable.
Yeah, absolutely.
Yeah.
I'm curious. You experience relying on sound, of course every day.
Are there any sounds that you really like or it's like your favorite sound? Just Wondering.
I love that question.
My favorite sound is my guide dog and he doesn't, he doesn't bark.
He doesn't like, he doesn't vocalize.
He was trained not to make any vocalization.
So he, it's not his barks.
It's hearing him breathing and hearing his paws walking around brings me a sense of comfort and security, particularly at night.
I'm a really light sleeper and I feel really vulnerable at night, like not being able to see anything and like, you know, if something bad's going to happen, it's usually going to happen at night.
And hearing him, like I've had a guide dog for almost 19 years now.
So the odd time when I'm traveling and I can't bring my guide dog and I don't hear them deep breathing at night or snoring or shuffling or sighing and re - you know, getting up and spinning in their bed and laying back down, like when I don't hear those noises, I feel so alone.
Like that sound brings me so much peace and comfort that like that is my favorite sound in the world.
It makes me feel very happy.
Wow. I love that.
A lot of people have shared and told me that silence forces them to feel kind of isolated and alone.
And they rely on those little sounds and noises for comfort.
For me, interesting enough, at night is a very vulnerable space and state for me similar to you.
I'm completely I take all of my devices off at night and so I sleep very soundly.
I don't hear anything at all. But it's dangerous, right?
If something were to happen in the middle of the night.
And so, and that's part of the big reasons why I have a dog, a service dog, Willow.
Willow has been professionally trained and I'm a 100% confident she would wake me up in the event of an emergency.
She will literally run to the door and then run to me and pull me and pull me literally.
And so she's also trained to let me know the sound of sirens if they're nearby or if someone were to be calling my name and they're behind me, she will literally tap my leg.
And kind of an unexpected benefit of having her is I'm able to look at her ears and the positioning and the directionality of where her ears go.
And that will let me know what direction the sound is actually coming from.
Wow. Yeah.
Dogs are amazing. I, you know, I was joking.
Yeah, and that directional hearing is amazing.
I've never experienced that in my life.
Yeah, that's - So to be able to just see that.
What's funny is I can tell where my guide dog's head is looking.
So through the harness, I can feel when his head turns a certain direction and that also gives me a sense of understanding of like that he's looking at something over there or that something might be happening in that direction.
I think dogs are so incredible.
And I was joking the other day that I think like Elton thought he was supposed to be like a hearing alert dog because the other night our alarm went off at 1:00.
The like the fire alarm in our building went off at 1:00 AM and he was so like insistent.
He kept nudging me and then turning his body to the door and then turning back and nudging me and turning his body to the door like, "Mom, get, you have to get out.
You have to get out. " And it went off again at 40 AM and he did the same thing and he was like, I couldn't calm him down.
Like there was nothing, there was no reason it was going off.
Nothing was actually wrong. It was like a false alarm.
And, but he was so beside himself trying to like nudge me and then turn to the door and nudge me and turn to the door.
And he kept going back and forth and panting really heavily.
Like he was like, "We have to leave.
We have to leave." And it's that sense of safety and security I feel because exiting an emergency when you're blind is really difficult because most people, it's kind of like every man for themselves, right?
Like everybody starts panicking.
Nobody's reacting rationally in a true emergency.
Everybody's just like doing what they need to do for self-preservation, which means if I can't see where the emergency is or what the emergency is or how to get out safely or the exit I might usually take isn't safe for me to take now, knowing that I have the dog to be my partner with me and make sure I do get out, like gives me a lot of safety and security.
And one thing I learned, and I'm curious your, your thoughts on this or your, if you've thought about this much, but one thing I learned kind of like early mid - 20s that I had never, never really though about or knew was the fact that while disabled women are at increased risk for dating violence, sexual assault and abuse, those who are most at risk are those who are deaf and those who are blind.
Because one of our main senses that keeps us aware of our surroundings is impaired.
And that was like a really big awakening for me when it came to things like dating and going to parties.
Like I, we never like to think of ourselves as vulnerable, but when you realize like statistically we literally are, it made me approach those things differently.
I'm curious if you, if you knew that or if you've thought about that much and what you've done to keep yourself more safe.
I wish I knew more about that sooner, I will say.
Just to clarify you know, living alone is a big thing in LA.
For me, one thing that is kind of haunting and I will say haunts me is literally I could be sitting next to someone and they could be saying the most terrible things about me to me and I would never know.
I would never know.
There's a lot of situations that, you know, if someone just turns their head from me and I, I can't judge their character appropriately because they're not facing me because I'm not able to gather all of the information.
I feel that same way.
I don't know if you had that growing up where people would talk about you in front of you, but I would have it where people would make gestures to each other about me and like mouth things to each other and point and make faces and I would have no awareness that they were doing that and like making fun of me in front of me.
I've had situations like similarly where you're saying like you can't get all the information because you can't see them when they turn away from you.
Like with, with men, like I can't see their body language.
I had a situation last year where I was sitting alone at a table in public and an, like a middle-aged older man came and sat at the table with me and was staring at me.
And I literally had no idea he was sitting at the table with me.
I though I was sitting alone.
And it was like so crazy - unti my mom came - That makes me so upset.
So upset. My mom came over and she like grabbed me and we like ran away and she told me what was happening.
And it was like all of those like little moments where you realize that when you do have a sensory disability, when you're missing all of the context from hearing and seeing, it does like put you at greater risk for these situations.
And some of these things we can prepare for, but some of them we just can't.
And it means we're taking those risks every day.
So hearing people don't realize that often just situationally, they're able to tap into a lot of information incidentally that occurs around them.
Deaf people don't have that privilege.
So you know, group and shared knowledge, everyone being on the same page is not something that a lot of deaf people experience and they miss out on quite a lot of incidental information.
I absolutely hate hate.
I have a heightened awareness in my peripheral vision because I am constantly checking in on what's going on on either side of me.
So if someone is walking either to the left or to the right of me and behind me that I can kind of barely see out of my peripheral, it is so uncomfortable and I hate it.
It makes... I try to make a big effort to stand in specific ways to allow people to pass me where I can visually see them coming or where they're moving.
And that's an intentional thing that I have always done.
I didn't even realize that I, I did it until recently.
And that's specifically for my safety, you know, that situational awareness is very important.
I've also experienced bicycling.
I have a lot of experience with bicyclists just whizzing past me and I have no idea that they're even coming where I've almost been hit by a bicyclist.
So those types of things I, I try to be very aware of for my safety.
And then also the third point is staring.
When you're deaf, you use sign language, right?
People are so curious and they will watch you and stare at you all day and say, "Oh, sign language is so beautiful.
I just had to, you know, watch you. Wait, what is that word?
Can, can you do it again?
It's so beautiful." I mean, they're fascinated with it.
And I don't blame them.
Curiosity on its own is a sign of intelligence.
So I do not blame people for being curious at all.
It's a wonderful thing. However, nobody wants to be stared at.
I've lived enough life that, hey, I can ignore it and tune it out pretty easily.
But the people around me, they never can.
And they always feel like someone is staring at them.
And that's something that even now I have the burden of making them more comfortable to be around me with an experience that I'm used to.
So yeah.
You asked me what my favorite sound is as a blind person.
As a deaf person, is there something you've learned that makes sound that you had no idea actually made sound?
Because as a blind person, there are so many things that I continually learned that sighted people can see that I had no idea.
Like I had no idea you can see texture.
I though texture was just something we feel.
I had no idea you could see it.
I had no idea until I was like 17. This sounds so stupid.
I had no idea people could see into each other's windows.
I though windows were a one-way street, baby.
We see out, but not in.
Imagine my surprise all the times I was changing in front of my window to realize other people could see in.
So I'm curious, is there, is there... Or like snowflakes.
I had no idea people could actually like see like the shape of snowflakes.
Like that's not just like a whimsical thing we do where we cut out the fun little snowflake.
I, like they're actually shaped like that. Who knew?
What as a deaf person did you have no idea made sound?
Oh, oh, okay. The list is pretty extensive, I will say.
Mine too. I could go on and on.
Yeah. One thing so my car last year, I learned that people can hear music outside of the car.
I have my volume way up to the max. I don't hear it.
I feel it, right? In my car.
I had no idea that people outside.
So I parked and I didn't realize that other folks were looking at me like, "Uh, your bass is pretty loud, girl.
Yeah, my, my, I didn't know that.
And then squirrels.
I had no idea that squirrels made noises.
I'm very grateful to be deaf for a number of reasons.
One major one being people have told me that they can hear breathing as well as saliva and like clicking in your mouth.
There's just so many different bodily sounds that I've been told about.
And I'm like, I'm so glad I cannot hear that.
It's disturbing. Oh, it is. You say that your eyes work.
It's make noise too like if they're dry.
I'm like, "What?" Cooking.
The car turn signal.
I didn't realize that that actually made a noise.
What else? I'm constantly learning through social media too and the various comments.
I mean, I've learned a lot.
So for a refrigerator, I didn't know that that makes a constant noise.
Yeah. There's so many things that are very baffling to me.
No, literally like you are lucky you can't hear mouth sounds because the amount that it bugs me when I'm hearing people eat loudly, oh my God, it drives me nuts.
And there's things that I'm grateful I can't see.
So I'm like so grateful when I'm... Okay.
I'm grateful that I can't like see violence.
Like, like I don't - Yeah.
I don't have to see like be scrolling social media and like a violent video come across my feed and like see humans being tortured or animals being tortured.
Like I don't want to se that. Knowing it exists is like bad enough. It's Coming up more and more Often.
Yeah. I'm grateful that when I'm at the gym in the changing room, I don't have to see everybody else's naked bodies.
I don't want to see what you got going on.
You know, I'll just live in my own world.
One time I was at the gym with my sister-in-law and we went into the sauna, like the steam room.
And you know, you go like wrapped in a little towel.
And most of us, like we stay in the towel, but she like had to lean over to me and she was like, "Just so you know, like don't look directly to your left because there is a naked old woman with her legs spread and she's on the bench above you.
So your eye level is straight down the cooter." So she was like, "Don't, don't look." And I was like, "You know what?
The fact that you have to see that and I don't, like who's privileged right now?
You or me. It's me. I'm privileged."
You win that one.
I Win that one. Yes.
Wow. Yeah. I mean, there's lots of things that I'm like, I don't need to see that.
I, I can just live in my own little universe.
Yes. The last thing I'll say, I am grateful to have the disability that I have.
And that exposure for me, it's a part of humanity that a lot of people don't get to see or even recognize.
When people are willing to have empathy, to provide access, to learn ASL, to write for me, you know, so that we can communicate.
It's our side of humanity.
Like you and I being able to share this space together, you can see that part of humanity that a lot of people just miss and they don't see.
I completely agree. I feel the exact same way.
And it took me a long time to get to that place to see the beauty in this lived experience and not just the pain and not just the hardship.
But the reality is like my circumstance, your circumstance, it's not going to change.
Like this is the way we are.
This is who we're going to remain.
And so we might as well find a way to make the most of it and love our life than sit here wallowing and hating.
Like yes, the hardships of being deaf or being blind exists.
They're obvious, but the beauty is equally there.
Like the compassion it has provided me, the passion I have, the community that I've built, like all of those things and so much more I only have because I am blind and that's a gift.
I did want to share going back the being vulnerable at night.
Just one point that I had forgot to mention.
It's kind of a crazy story.
I want to say three or four years ago I was dating someone.
We went to a bar. We walked in, we were signing and I walked into a different area and my partner was standing alone near the security guard.
And the security guard asks my partner, "What does she sound like in bed?" Yeah.
And that is a continual thing, right?
It's a though I never thought of.
But men, of course. Of course.
Of course men. Of course men.
The amount of like unhinged things and they always think they're so fricking creative.
I have had way too many men ask me if sex is better because I'm blind.
And then when I'm like, A, I lost my vision at 14 so I've only had sex blind.
Couldn't tell you. But B, like literally why would it be?
And then they say because I have heightened senses as if that is a sense.
So it would be heightened. Oh my gosh.
Isn't that like, I'm like, where do men, where do men even think of these things?
Oh, it's ridiculous. The audacity. The audacity.
The audacity. The men... Okay.
I don't know if you have this where there's like a common pickup line for me when I was younger when I would like be at bars or parties.
Every man would say this like he was the first man on earth to think of it.
They would say, you know, I'm better looking than I sound.
And I'm like, okay. Yeah, you and every other man.
Or they, everybody loved to tell me they looked like Brad Pitt.
Everybody. I don't know why Brad Pitt was the go to, but they would, you know, people say I look like Brad Pitt.
Oh my God. Everybody shut up and stop acting like you're so funny.
Oh, yeah. And then I get this when you're supposed to be good with your hands.
I mean, I am. So You know, I have Braille-reading fingers.
That's all I'm going to say.
Yeah, yay. Yeah. I am curious and for you, if you experience working in the entertainment industry I work as a director.
You know, I'm on set.
I'm constantly trying to provide accommodations to make the space accessible for everyone, especially to feel safe.
So just wondering behind the scenes access in the industry and all of that, what are some of the biggest things that could be improved upon in the industry?
So much. I think entertainment perspective.
Yeah. For me, one of the biggest things that blind actors face is a misconception that it is unsafe to have us on set.
That because there, you know, sets are a jungle gym.
Like there's so many chords and lights and tripods and ladders and you know, like set design and all of this stuff that it's unsafe to have us, that we would be a liability.
And so it is simply easier to hire a sighted actress or actor to play the blind role than it is to just hire a blind person who could absolutely provide more authenticity to that role.
And that for me is like such a frustrating misconception.
It's something like I've literally had people say it to me.
I've had people say it to people on my team that they think it's unsafe and that, it makes sense that people wouldn't hire a blind actor and would hire a sighted actor because it's unsafe to have a blind actor on set, which is simply untrue.
I've been talent on many major commercial sets and I have never once had an accident or incident.
I've been completely fine. Yeah. Yeah.
And like there's, there's workarounds.
I think I'd be curious to hear like your experience working on sets in the industry behind the scenes, because I truly believe the only way we're going to make a change is when we have representation on every level.
Like we need representation in the casting room, in the writing room, on set both as talent and as crew.
Like we need representation at every level to get it right, particularly because as somebody who's been talent many times, talent has the least pull, right?
Like unless you're Jennifer Aniston, unless you're an A - lister, talent doesn't usually get to say, "No, I'm not going to do that.
Or I'm going to change the lines to be more authentic or I'm..." Right?
Like we, we need people behind the scenes with more power making those decisions to empower disabled talent to get to play the role authentically.
So I'm curious as somebody who does work behind the scenes a lot, like what have you seen?
Do you get pushback? Do you get... What are your accommodations?
Like just what does working behind the scenes in the industry look like for you?
It's definitely a challenge, an ongoing fight without a doubt.
I'm so passionate about making these changes that you just discussed.
I mean, I'm often the only deaf person on set and people are always curious, right?
And it's just important to have an open mind. Right.
One thing that I'm constantly thinking about, we literally have a 42-inch cart, we'll say, and we need ramps to pull those heavy carts in, right?
We make access happen for the equipment and all of those very nuanced things that are needed.
We make sure that the set is accessible for that, but somehow we don't do that for people.
Same. And it just fascinates me because from an outside perspective, I mean, there's no reason for all of the barriers and all of the rejections and the denials that come.
If you just meet the people, interact with them.
Yeah, you learn pretty quickly.
They are more capable than you believe.
I've been called a liability.
Expensive. I've been told a slew of things.
And I've learned for myself on set, this is a sign for rolling.
It's, it means everyone needs to shut up.
Don't move. Don't make a sound.
But I could still communicate, right?
Silently and quietly through sign.
And so good. It's so benefit on set.
That is such a benefit on set.
Yes, absolutely.
You know, everyone who works with me, they're like, "Oh, that's really nice.
That's actually great." You know, it's, it's simple.
Even knowing some basic sign, you can still communicate while things are rolling.
Brilliant. I'm obsessed with that. That's good.
And the idea like I, you know, say the cost and stuff is totally something that I've heard too.
And what's, what's always interesting to me is like when you cast, say, a sighted woman to play a blind woman, you then have to secondarily hire a blind consultant to be on set.
Yeah. Or I don't know, we just hire the blind actor who doesn't need a consultant because they live the experience.
So actually it would be cheaper to just hire the one actor than the actor who can't play the role authentically and then the consultant who needs to teach them how to play it authentically.
Ugh, yes.
Make it make sense.
Yeah. I constantly am telling people that there is no such thing, no such thing at all as an accessible entry level job for people with disabilities in Hollywood.
Because Hollywood is building their foundation on the idea that you work your way up, right?
You have grueling hours as a PA, you start there, you got to prove yourself.
Slowly in the mail room, you work yourself out and that's historically what the industry has done.
And it takes it very serious and that's still the case.
And then I currently as a director, the DGA, Directors Guild of America, 0.6% of television directors identify as a person with a disability.
That's 0.6. That's horrific.
And I am so, I am motivated within my lifetime, within my lifetime to get that to 2% at least.
I, I mean, there's so many of us out there, you know, our friends that we've met in the industry.
Fingers crossed, it'll happen. But that is my goal.
I love that so much and it's, it's so necessary.
I, we have so much talent in this community and there's so much that we bring to the table.
But the non-disabled people who are the gatekeepers, right, who hold the keys, all they see is the limitations.
They don't see all of the value that the inherent limitations we have faced our whole lives have given us.
The value that we then bring to the table, the different creative lens we look at life through.
The innovation, the adaptability.
All of these things are assets and, and so much more.
And it's, we just need enough of us fighting this fight together to slowly get to where we need to go.
But it's a long fight.
Yeah. Yeah.
What do you wish more people knew about your lived experience as a deaf woman or about deaf culture, about how to communicate with you?
Like what are some things that you wish people would understand?
I feel like like one thing that I see when I'm around a lot of people that drives me nuts is I feel like I see a lot of people like speak to a deaf person's interpreter instead of speaking to the deaf person, which is something that I face a lot as a blind person.
People will speak to my sighted guide about me instead of speaking to me.
Like is that something you find you face a lot or what are some things that you just wish people Understood?
Always. Always. Or they talk to me like a baby.
They're shocked when I tell them that I went to college.
I mean, that's constant.
I think the biggest thing I try to think about it from other people's perspective, you know?
They've never met a deaf person before.
They're nervous or they're either scared to say the wrong thing.
Or maybe they're extremely eager and they just want to ask a bunch of questions.
Or maybe I'm lucky and they actually genuinely want to learn sign language.
And I have nothing but positivity for, you know, all of those people in their various journeys.
I know there are a lot of people that are afraid out there and you know, just that fear to interact with deaf people to say or do the wrong thing.
But I hope that those people don't deprive themselves of the opportunity of meeting such beautiful and amazing people.
I think we can give a new lens and a new perspective on how we analyze stories and events and things that are going on.
And we don't get the chance, yes.
You won't get the chance to meet us unless you overcome that fear.
And that, of course, is something that kids growing up are never taught.
They're never taught anything about disability, right?
It's a very taboo topic.
But I want people out there in the world to know that I am aware of that and that I'll do whatever I can in my power to empower you to feel comfortable in a situation in terms of communication.
It doesn't have to be about deafness at all.
You can, we can overcome that barrier, you can overcome that barrier and just move on.
And we can just talk as air quote normal human beings.
And that's why representation matters, right?
Like back to this conversation around - It definitely is.
There is. Why it mattered to us growing up and why we now both choose to work in the industry to try to create more of it.
Because the reason people have so much trouble interacting with us is because of the lack of access.
They had to learning how to do it.
And so now they're uncomfortable. They're fearful.
They don't want to do or say the wrong thing.
And unfortunately, sometimes they do, right?
Like when they do talk to my partner instead of me, or they get really close to my face and start yelling and talking really slowly to me, or they start forcing me to touch their face by grabbing my hands and putting it on their face.
Like they do these awkward things that are uncomfortable for both of us because nobody ever gave society access to authentically learning about our lived experiences and learning what, what words should we be using?
You know, like what, what language does the community prefer?
Or what are like, you know, how would a deaf person or a blind person do this task in a way that I might not be thinking about?
But when we can give them access to learning and we can show them what those things look like, all of a sudden it dispels all of this discomfort and misconceptions and stigma and they can just see us as people the way we want them to see us.
Yes. I want people to really keep in mind that accommodations really means what do you need to thrive the best in this environment to be successful?
That applies to everyone.
I definitely have a lot of internal ableism.
I've experienced trying to just become so many different versions to satisfy and be acceptable to other people.
The goal is always for the new and the next generation to catch up sooner. Yes.
I definitely have dealt with a lot of internalized, internalized ableism and it's something I'm still constantly trying to check myself on and like be aware of and, and unpack and, and heal that, that version of myself.
And I think it's hard not to have internalized ableism when we ultimately live in an ableist world.
And a lot of ableism is unintentioned, right?
Like it's not, it's not out of hatred.
It's just out of lack of knowing.
And when we can empower ourselves by being a part of that education I think it at least for me allows me to feel like I'm not a victim to my circumstance.
Like I'm at least trying to change the reality of the world I live in selfishly for me, but also hopefully for the future generations so that they don't have to go through as challenging of life as, as we have at times.
I want that for them.
Yeah. Yeah. And I - 100%.
I agree with what you said about like accessibility is just like what, what does everybody need to thrive?
And that it, it goes for everybody disabled or not.
I feel like that about the term special needs.
I, I really hate that term because we all have individual needs.
Like my fiance, my mom and my dad all wear glasses.
None of them are disabled.
They all just have a need to wear glasses.
That's just their individual need that they have that some other people don't have.
But we don't call that a special need, yet suddenly when somebody's vision goes past a certain point where they're on the legally blind spectrum, suddenly it's a special need.
And it's like, why do we have that limit of where it becomes a special need versus just an individualized need that person has?
No, I grew up with that vocabulary and I'm still learning, you know, to unpack and get rid of a lot of things from the past.
Special education even in applying to myself. Yeah. Yeah.
Growing up with various words attached to you, so for example, selfish, burden, liability, you experience that yourself.
Oh, it's a heavy burden to carry that.
I don't think our community invests enough time in grace and really acknowledging that, I will say, because it is hard.
It's hard to let go of that anger in life, you know?
I wish that I had this and you have this vision of whatever you though for yourself, right?
And I've experienced eating at a, a table full of deaf people and being able to look out and communicate, feel comfortable, feel safe because everyone was using sign language.
But it stings a little bit for me because I'm able to recognize in looking back, I will never have that with my own family.
And that is a really emotional process that has taken years and years of therapy for me to unpack understanding other people's version of love and what that looks like.
And sometimes it's not what you need.
Sometimes it's not what I needed.
And so I'm only sharing that because I really hope, and I know that other people with disabilities probably feel a level of shame or embarrassment, but I also wish, we all crave understanding at the end of the day.
I have those, those moments in my life as well, like you had at that dinner table where you're sitting eating with all these other deaf people and you're like, oh, this is what every meal is like for everybody else.
Like I have those moments when I get to use something that's accessible for the first time that has always been difficult for me that I've never been able to do independently.
And at like 32 years old, I do it independently for the first time ever.
And I think this is something everybody else has been getting to do since they were seven.
And I'm just now finally getting to do it for the first time.
And I think those moments like will always sting.
It will always be frustrating when you realize, oh, this is how easy life is for everyone else every day.
And like I, I get excited when I have these moments and this is just a normal moment to everybody else.
Like my expectation of life is that it won't be accessible.
So I get excited when something is.
And I want to live in a world where my expectation becomes accessibility and I'm pissed off when it isn't.
Like that's the world I am working to live in.
Yes. Yes. Yes.
I think with new technology, I'm just wondering for you, I mean, I know for myself these past five years live captioning and that technology has improved drastically, being able to actually rely on it in various environments.
But also I grieve a little bit my younger selves who desperately, you know, would've loved that technology, you know, and also it's interesting with technology seeing how happy hearing people are, that they don't have to do anything.
They don't have to invest and make the effort.
Which is a little bit of a mixed feelings for me on that, right?
So I'm just wondering, I guess, for you, is there any technology that gives you that similar feeling?
I feel like that about a lot of things.
Like,two things can be true, right?
Like I can be so grateful that kids today growing up who are blind have representation and can see themselves.
Like when I was on my book tour with my memoir Unseen, the amount of like 12, 13, 14-year-old girls who came up to me and who were like, "I love watching your videos and I learned how to do makeup because of you.
And I am you know, I'm applying for a guide dog because of you and blah, blah." And I'm like, it like warms my heart so much that they, they have somebody like me and that they have other creators like me that they can watch.
And that there is TV shows that have blind characters in them nowadays, not nearly enough and not nearly as authentic as they should be, but they do exist in a way that I never had any of that shit.
And like two things can be true.
I can be so happy for them and I can also feel like sad for myself and wish that I had had that and wonder how would my life have been different if I had had that?
How much sooner would I have learned to accept myself?
How much less grief would I have felt and mourning in my vision loss?
How much less bullying would I have faced equally if, if my sighted peers had had access to seeing that?
Right? And so it's like - Right.
That, that can exist and, and it's, it's complicated to carry those things.
And I know this sounds... It's hard for people to understand when I say as a blind person that I don't want to be cured.
It's hard for them to understand that.
And I get it because it was hard for me to get to a place where I genuinely felt that and genuinely believed that to be true in myself.
But I was talking about this with my fiance the other day and I think it was the first time like I really said out loud that I think if I could see again... Oh, this is emotional for me, sorry. It's okay.
I might be sad at all of world I didn't get to see, like all the years that I was blind.
Might be like stolen from me.
Yeah. Like I would realize in seeing how shitty life had actually been and that I just convinced myself it was good because I had to.
Yeah. And like, like I would look at every positive memory I ever had and think how much better would that have been if I could see?
Like maybe that good memory wasn't as good as it would've been if I could have seen.
And I would, I would realize like even more so all the ways in which life had been harder for me that I hadn't even realized because I got used to the hardships.
And almost like having life be better is worse than having life be what it is now.
Does that make sense? I know that's like a weird way to see it.
100%. No, I feel the exact same way.
It's easy to try to, you know, mask it as confidence in that it's, it's everything is okay, you know?
I never wanted to be cured.
But damn, some days, some days I just, people are experiencing things and I can see the beauty and the excitement that they're, they're experiencing and I wish so desperately that I could understand what they're feeling.
I do feel like I've missed something.
And some days I don't, you know?
But so often I do.
Yeah, I told you I'm a curious person.
I wish that I could experience one day of not being deaf to understand my mom's voice, to understand my dad's voice, to hear music, what it's supposed to sound like.
Because people make it seem so magical.
And you know, living I've had to convince myself that it's not a big deal and to push it aside, but what if it is?
What if it is something that I've identified myself with and I've closed it off?
And I know that's so controversial.
My people in the deaf community don't say that.
I wouldn't say that. We constantly talk about pride and pride and pride.
Oh my God, if I could just go to a coffee shop in the morning and understand what the barista is saying and then leave without having to do all of the extras just for a coffee order, right?
That would be nice. I think I don't wish for it.
I don't crave it regularly.
I live an amazingly thrilling life.
But you know, there are some things that are just... Yeah. Yeah.
I feel like I, when I first learned to accept my blindness and stopped wanting a cure, like it was a coping mechanism.
Like it was my way of radically accepting the thing that I know could never change anyways.
So it was like really the only choice that I had to be happy was to force an acceptance.
And I'm at a place now where that acceptance isn't a coping mechanism.
It isn't force. It is. I genuinely look at the life I have and I think I'm so grateful for it.
It is as beautiful as it is because of my vision loss and my identity within the disability community.
But like I had to go through so much grief, so much hardship, so much acceptance to get to where I am today and such a huge like life transition that held so much trauma and pain and joy and beauty that if I got my sight back, I would have to go through that again.
Like I would have to go through an identity crisis and be like, wait, I've lived this version of my life for so long.
How the hell am I supposed to find this new version?
Like it feels like it would just be so overwhelming and I think I would like I, I've had to do the identity crisis, the grief, the transition once, and it was hard and I don't want to have to do that again even if it's - Yeah.
For something that everybody else tells me is worth it or everybody else tells me is like the thing that I should want.
I've genuinely learned to accept this life and I don't, I don't want to put myself through that again.
Exactly. That's something else that I think about, right?
If you think about just the brain, right?
It's used to a specific stimulation at this point.
My whole life I've slept in complete silence, hearing nothing.
Hearing people will tell me they can hear the rain or they can hear specific sounds and they need that to be able to sleep.
Imagine your whole life being silenced and now you're trying to sleep and all of a sudden you hear all these things.
How disruptive that would be.
I think that it would literally fuck up my brain.
Like, Yeah.
My entire mental process would be messed up.
I also tell people hearing aids and cochlear implants, they're not like glasses.
It's more like a bra. You take it off at the end of the day and some people prefer to use them.
Some people prefer to use them in specific environments.
And then some people prefer just to use them for safety reasons.
Well, really at the end of the day, if you have hearing loss and you're struggling in different ways, you're valid in your identity.
I also feel the same way you feel like hearing everything would like fuck your brain up.
I feel that way about seeing everything.
Like I've never had twenty twenty vision.
I've always been legally blind.
And when I hear about all the things that people are seeing all the time, I'm like, that sounds so overwhelming.
Like it just sounds so much to me that you're always taking in that I'm like, I don't, I don't know if I could handle that.
Like it just sounds like a lot.
Oh, yeah. Yeah. Like my physical brain would not be able to handle it.
The stimulation, the change of that on its own I think would just be way too much. Because again, I've gone my entire life just not having to experience hearing a lot of the, the very specific noises that most people hear. So.
And they've done like MRIs on blind people and it shows that our brain is routed differently.
Like we do process things differently.
And the sections of your brain that usually light up for sight, like they've, they've rerouted and they light up for different things.
And so it's like quite literally our brain works differently and I wouldn't be surprised if it's similar for people who are deaf. It's similar.
Yes. Yes, yes, yes. It's similar for the visual language.
Yeah.
Wondering if you would like to, if you're curious what a device feels like.
Yeah, I've never been able to see them and I've never touched one so.
Okay. I'm going to grab mine.
Okay.
So I bought a few different devices.
These are older hearing aids.
I used probably in high school, maybe early college.
They're clean.
So where your thumb is currently, that's the mold of the ear. This?
Oh, that. That, yes.
And then the tube leads to the part that actually connects to the back of the ear.
And that's a full shell.
Because of severe hearing loss that will trap all of the sound into that one unit so that if the sound escapes, it won't work.
And now this is what I have currently.
That's a cochlear implant.
I have a white version of it. You feel the circle?.
So that actually connects to a magnet that is under my skin that was implanted in my head.
And then that part, the hook part goes over my ear.
Yep, exactly.
Now I'm going to prepare you for this one.
So I told you about the feedback earlier, right?
And how there's a ringing and an eek sound.
So I don't know if you should do earplugs because it... I don't know. Let me know what it sounds like.
But I can't tell when it's on, so you tell me.
I heard a litle beep.
Whoa. Here.
Yeah. You can kind of feel the vibration if you hold it.
I don't know if you guys can hear that through my microphone.
Whoa. You can hold this one too.
Oh my goodness. It's like a bad microphone.
Like when somebody has a really cheap microphone and it gives that like tinny feedback. Wow.
Yeah. Yeah. It's something that I've heard my whole life.
Wow. That is so interesting.
Yeah. So there's different types of hearing aids.
That's just one version.
Oh. Oop. The feedback sound.
So this is... Want to see if you can hear the beep.
Oh, yeah. Whoa.
Hello? Hello? Wow. It's... I don't want you to put it in your ear - No, I won't.
Because I let my friend do it last month, honestly.
And we were scared for a few hours because we thought she actually damaged her ear.
Whoa. Yeah. It was just too loud. Yeah.
Yeah. I mean, I can literally... Oh my God, it's like having a microphone in your ear.
Yeah. Yeah. Oh, the feedback is terrible. That sounds like It would be very Uncomfortable.
I feel the vibration, but hearing the high pitch is something that I can never actually hear.
So when it happens, I have no idea.
It's literally happening right now.
Oh. Okay. I don't know which one's on.
Let me see which one is on.
I'm trying to feel it on my cheek. That's so Fascinating.
I think. But teachers would be like, "Who's on the phone?" And I'm like, "Oh, uh-oh, that's my feedback.
Wow, you would think they would've figured out how to not make that happen at this day and Age." Yeah.
It's just the effect of severe hearing loss because the sound is up so high, as maxed out as it can be volume-wise.
Yeah. So those are some of my devices.
So for the cochlear implant surgery too, you're special.
I'm going to let you feel where it actually was on my head.
Oh. Yeah. Wow. Huh.
So there's almost like a bump under the skin, which is where the magnet is.
And then you loop it around and the magnet attaches to the piece on the outside.
Exactly. Yeah. Yeah.
I can feel the wire in the back of my ear when it's on and yeah.
You know, I, with every podcast episode, I have like an awkward question.
And actually my awkward question for this episode was going to be about cochlear implants because I know like it is such a divisive topic, right?
Like it, within the deaf and hard of hearing community, it's like a very widely debated topic.
I'm, I'm curious to hear about your journey with choosing to get a cochlear implant.
Was it a choice or was it done when you were a child?
Like what, what did that look like and what, what is your stance today of having had one?
I've already stated I love my family.
It did affect my relationship in college and I struggled quite a bit with the relationship with my family and my hearing loss for a long time.
The middle of college, it got to a point where I had basically an intervention of sorts with my family.
And they all sat in a circle and told me one by one how my deafness was negatively affecting them and that I was selfish for not wanting to get implanted.
And at that time in my life, I did not have a deep desire to hear.
I was actually starting to really, you know, come to terms with who I was and my identity.
I had struggled with being deaf, but I took a semester off of college.
I got the surgery after that happened with my family.
And a few of them told me more than one time that I was selfish.
And I'm very triggered by that word now because all I want in my life is to be unselfish and to support other people and remain positive and to make the world a better place than how I left it.
But yeah, every member of my family shared their perspectives on it and again, use that word selfish.
I requested my parents to learn even the alphabet in sign language and my mom did.
She knows her ABCs now. Applause for that.
My dad never did learn any sign language and he never will.
And I've accepted that. I've tried to make it kind of a fifty fifty in terms of compromising.
I get the surgery, you learn sign language." And they didn't follow through on that.
But yeah, I mean, I understand life is busy, they don't understand my perspective, they don't understand how I could want to be deaf why I didn't want surgery to begin with, and yeah, I personally, when we talk about the surgery and cochlear implants, it's a personal decision.
It should be a personal decision for everyone.
I wish that I had done it on my own timeline, but I don't regret it.
So it is a complicated feeling.
In the community, we've experienced so many people who try to fix us.
In the deaf community, it was perceived, deaf people were perceived as dumb.
And so there's so much negativity and negative history attached to deafness.
Work within the deaf community that has been done to show people that we can and we're not dumb.
We're just deaf. That's all. We just can't hear.
And so when new technology comes into the picture from this medical perspective, it's important not to forget socializing with devices is not the same as normal, air quote.
The idea that, you know, this is something that people have told me often.
I'm not proud to be deaf because I got a cochlear implant.
And that there's a number of things.
It's just, it's ridiculous, you know?
People come up with a lot of different things, but at the end of the day, the point is the same, right?
We all want access. We all want to be able to communicate in this world.
And for me, that does mean using sign language.
I, it's hard. It's so complicated. I don't, I don't... Yeah.
I'm, I love my deaf community. I love my deaf community. So I'm almost left speechless that you had that experience.
It like actually breaks my heart.
Like I'm so sorry that you had that experience because as you said, like this feeling that we live with as disabled people that we are a burden, it's hard enough to feel that.
But when people who are supposed to love you unconditionally affirm that that's true is so shocking to me, to be honest.
Like it's extremely shocking and upsetting.
And you're not a selfish person.
You being comfortable in your identity, being proud of being deaf, not wanting to change not selfish.
We don't have to manipulate ourselves to fit anybody's world and be enough.
You being comfortable in yourself is what matters more than making other people comfortable.
And I'm so sorry that anybody has ever made you feel like that is selfish.
I think it is selfish of other people to say that.
That is like really, really, really shocking and hurtful and I'm so sorry.
I saw a video recently that came up on my TikTok feed and it was a woman talking about the hardships she faces because she married a blind person.
And it literally disgusted me.
It was so hurtful and I'm not that person's spouse.
And I thought if my spouse ever talked about me that way, ever made a video about the hardships of marrying a blind woman, it would shatter me.
And maybe they have a different relationship and it doesn't bother him that she did that.
But to me, like I understand that my disability impacts everybody around me.
My lived experience as a blind person is not just mine.
It is my parents, it is my brother, it is my partner.
But to vocalize to me or to other people that me being in their life is some level of a hardship is so like unbelievably hurtful because we already, we live with so much hardship already being in your world that for you to put that on us and blame us for how hard it is on you is like so unbelievably like ignorant.
It's just like such an ignorant thing to do.
And I, the idea of like the hardships I face of inaccessibility being hard on you, so I need to change is like just unreal to me.
And like I feel very, very having heard situations like that, I feel incredibly privileged that my partner and my family has never made me feel like my blindness is hard for them.
If anything, they've made me feel like my blindness has been a gift to everyone because it has opened the world up to seeing it in new ways and it has taught them so much.
And like I feel very fortunate, but I just want you to know you don't have to carry that.
You are not selfish.
Like, and I'm just sorry that ever happened to you and it shouldn't have.
And again, two things can be true.
Like your family can be amazing and you can love them, but it can also be unfair to have put that on you.
And I'm sorry.
Thank you for saying that. I really appreciate it. Yeah.
Therapy, girl. Yeah.
Before we fully wrap up, I'm curious to understand what as somebody who's profoundly deaf, did a cochlear implant provide for you that something like a hearing aid doesn't?
And do you choose to wear it often or no?
It depends on the day and the situation to be honest.
I haven't used it for the past three days.
But I put it on because I wanted to decorate it and look pretty today.
But the doctors recommend that you do wear it every day.
You wear it all the time when you're awake.
And whew, that's a lot.
My brain is tired and overstimulated at times.
I don't hear natural sounds, air quote.
And there's blurriness as well.
I actually have a video on social media that shows what a cochlear implant sounds like, what that sounds like using one.
Check it out. But it does give me access to emergency sounds.
Sometimes it helps me recognize some overall sound fluctuations, but not clarity in words.
It's typically best with people I'm familiar with and that my brain has already learned their voice.
People who I'm meeting for the first time, it's very hard to understand.
It's not clear at all.
It's a very, it's a little static sometimes because I don't have much auditory memory to pull from.
So with a clochalar implant, what I hear is often robotic, tinny, similar to a hearing aid, but less natural.
It gives me cues and clues, and I can feel more comfortable in different environments.
If it's a loud environment, then no way.
It's not helpful at all.
If I'm one-on-one, typically that's when I'll use it more often.
But in other environments, I won't.
It's interesting because there's never a moment where I'm only relying on the cochlear implant solely.
Because now, you know, I have new technology on my phone and, you know, I wish I was better able to explain it, but hey, that's why I made the video on it, just to have that particular point of view of what it kind of sounds like.
Well, and of course you've never... It's like I can't describe full sight because I've never seen, right?
So it's like it makes sense that it's very difficult to explain what it sounds like when you don't have reference of what everybody else hears.
Yeah. And people assume that hearing loss is based on percentages and that's just not how it works.
There are frequencies that are measured, whether that's high frequencies or low frequencies speech graphs or audiograms.
They're used to understand those hearing thresholds, which are all based on frequencies.
So you may be able to hear speech perfectly, but you may not be able to hear high pitch noises.
So, or it can vary. It, it can... The spectrum is wide.
So cochlear implants is my security blanket.
If I'm in an optimal environment, it works great.
You have been profoundly deaf your whole life and then you didn't get a cochlear until you were, I assume, like late teens, early 20s.
What was it like having that turned on?
Because I could imagine that would feel extremely overwhelming for your brain and your body.
It's not like this magical moment when it turns on and you start crying because you can hear the whole, the way we like see these viral videos of these people and they're like, "Oh my God, I hear everything." It's not, I know it's not like that.
That's a very movie Hollywood moment.
So what was that moment like at such a, you know, late stage in your life turning that on and having such a different reality than your, the rest of your life has been?
It sounded like a robot.
You cannot identify anything in the beginning.
Everything is completely jumbled.
You slowly train your brain how to decipher sounds and you know, you, you have the audiologist.
Of course they make the adjustments that are needed to your device.
But I, I wish I was better at explaining this.
I do. I'll say when I first turned it on, I hated it.
That first week I debated on whether I was going to actually continue using it or not.
But slowly you know, I used hearing aids my entire life.
So I'm used to that routine.
Waking up every morning, putting my hearing aids in.
There are artificial sounds that are triggered to the brain.
I don't have auditory memories.
So my brain creates things and tries to process and understand and interpret sounds on its own.
And it's not always accurate.
What is the song by Michael Jackson?
It's a Michael Jackson song. Thriller. Annie.
Annie. It says Annie. Annie, are you okay? Are you okay?
Are you okay, Annie? Yeah.
So that part of that song, I was playing it in the car.
What it sounds like to me is arc bulking.
Ark. Arc is bulking.
Arc is bulking.That's what the song sounded like to me.
I needed Shazam to actually tell me what is this song saying?
'Cause that's the words that I was deciphering For It.
But I, I literally thought it was bulking that that was the word that he was saying in the song.
What's bulking? Yeah. Yeah.
Yeah, exactly. Literally.
I could honestly continue to talk to you all day, but I know unfortunately our time is limited and I've, I've asked you a million questions already.
You've been so generous with your time.
For everybody who wants to keep up with you, your work behind the scenes in Hollywood, your deaf education, where can they follow you?
Yeah, you can follow me on social media @chrissymarshall_ And that's me.
On Instagram, TikTok, YouTube, we talk about deaf education and access in ASL inclusivity, working in film and content creation and all of the good stuff.
And I am very optimistic that at some point in the future, hopefully sooner rather than later, we will work together on a project to continue to increase access.
That is the goal. So hopefully you'll be seeing us do more together very soon.
As you watch all of my films, I am very passionate about accessibility both in front of and behind the scenes.
I work with amazingly talented, disabled, authentic individuals in terms of representation on screen, and I want us to really grow more of that in the future.
So fingers crossed, that is what we can do.
Thank you for everything you're doing.
We need more people behind the scenes empowering people across the board in Hollywood.
Oh yes. We need more people like you though. Yes.
Oh, like you, Chrissy. Thank you so much.
And thank you to everybody listening.
You an amazing advocate. Aw.
So thank you for all that you do.
I'm so happy to be here and have this conversation.
I was so nervous, but you're so lovely, so lovely, so easy to talk to. So thank you.
Thank you. Thank you. I appreciate it.
Appreciate everybody at home. Thank you for listening.
And now you know what it's really like.
Related Videos
Children found neglected, malnourished in Nashville homeless camp
Fox17Nashville
1K views•2025-03-19
Race Still Matters | Santiba Campbell
ElonTLT
104 views•2019-03-01
Opening session | Disability—Social Protection—Inclusion: Dialogue for Change
socialprotectionorg
155 views•2022-04-15
Domestic Violence in Utah
UtahStories
113 views•2023-08-18
What is disability at work?
fnegemedias8982
104 views•2025-10-23
Povertys Impact On Childhood Choices
ItsMoreThanJustPovertyPodcast
902 views•2026-04-25
Islamofobia meningkat di Australia sejak 7 Oktober 2023
astroawani
258 views•2025-09-12
Millennials, Parents and Grandparents: Family Transmission of Religion (and Non-Religion)
oregonstatehealth
520 views•2015-05-27
Trending
WOW! Judge TURNS THE TABLES on Trump in His OWN $10B LAWSUIT!!!
MeidasTouch
197K views•2026-07-23
Playstation NO DISC/NO BUY Fight Is Over...
DavidJaffeGames
4K views•2026-07-23
Steam and Xbox Just Dropped The Hammer On PlayStation
OhNoItsAlexx
9K views•2026-07-23
Americans Confused in Australia for 17 Minutes Straight
IWrocker
17K views•2026-07-23