Episode Transcript
Becca: Hello, and welcome to The Future is Sound, a partnership in hearing podcast brought to you by Oticon Canada. I'm your host, Becca Angel.
Thanks for joining me on my first podcast journey where we will chat broadly about all things hearing. We will launch fun, new episodes every month. If you have any suggestions or comments, be sure to get in touch. Let's get started.
Hi, everyone. My guest today on our first episode of the podcast is Olivia Meriano also known to me as Liv. She is a speech-language pathologist currently working at the Down Syndrome Resource Foundation in British Columbia.
Her master's research focused on applying theater techniques to develop social skills in individuals with social pragmatic difficulties. She's also very passionate about working with children, teens, and adults with developmental disabilities and has a strong focus on family-centered care and applying evidence-based practice.
Without further ado, welcome, Liv. Thank you for being here.
Liv: Hey, Becca. Thanks for having me.
Becca: You're welcome. You're the very first guest on the podcast, no pressure attached. Anyway, I love hanging out with you and getting to chat with you, so thanks so much for being here.
I was immediately drawn to your energy when we met at UBC all those years ago. I learned a lot from you and I'm still continuing to learn from you all these years later, so I wanted to have you on the podcast so we could talk a little bit about your experience growing up in a family with brothers and sisters that had disabilities and how you use your master's research with theater into your current job. We'll unpack all of that information in the next 20 minutes.
What most people don't know about you is that you have two brothers with congenital hearing loss, and that is genetic. You'll have to correct me if I'm wrong, but you may or may not be a carrier of the gene that causes hearing loss.
Liv: Correct, yes. I'm told that there's a 50% chance that I'm a carrier of this gene in my family. I wish I could be more specific than that, but I can't. We actually don't know what gene causes it. We know that it's through the X chromosome, but that's as far as my family has ever explored it. It's not really anything that we've looked into, to be honest. If I had to guess, I would think that it's just one of those things that have been accepted in my family, and no one really had the desire to look into it more.
Becca: Someone listening might know what the gene is, but obviously, it doesn't matter. It only runs in males, is that correct?
Liv: Yeah. It's expressed as hearing loss in males when they're born, but in females, they're the carriers. If I had a boy, there's a possibility that he'd have severe to profound hearing loss, but if I had a girl, there's a possibility that she's a carrier of the gene and will pass it on. It's one that has been through my family for generations and generations.
Becca: I was going to ask you, do both your grandparents have hearing loss?
Liv: Yes, they're both Deaf.
Becca: Where are your brothers in relation to age to you? What was that like discovering that they had hearing loss for your mom and for you, Liv?
Liv: I grew up in a big Italian family. I have two older sisters and two younger brothers. My two younger brothers are both Deaf, and I am smack dab in the middle of my siblings, so I was that annoying middle child growing up. Everyone has a middle child that they know.
I grew up around Deaf culture and the Deaf community. My grandparents are both Deaf, my brothers are Deaf, and one is on the spectrum, so it was really a fun upbringing. My mom grew up teaching us American Sign Language. She's a CODA—a child of Deaf adults—so she grew up signing. That was her very first language until she went to school, so it's a pretty unique experience.
Becca: I don't know if it's changed now, but I feel like it has. For your mom growing up all those years ago with Deaf parents is a totally different experience than today.
Liv: Totally. It's interesting. It's one of those things where you feel like you don't know your family has this unique thing because that's just all you know growing up. She has funny stories where she goes to a friend's house and learns how her family's different.
In our family, to get people's attention, we flicker lights. Some people don't do that. I put notes under my brother's doors to get their attention. Other families do that. You just learn as you grow and are exposed to different people and different families what makes yours unique.
Becca: Both of your brothers do wear hearing aids, so they were fitted with hearing aids and also signed.
Liv: Yeah. They wear hearing aids, sign, and lip-read, and their primary language is English, so they did go to a mainstream school. Their hearing aids are from Oticon, funny enough. I wasn't paid to say that.
Becca: Cool. Let's move into talking about your sisters. I met you when we were at UBC. I know that your sister, Navia, passed away just very close to when we started school, so that was obviously a super challenging time, but I love hearing all your stories about Navia. You always have these amazing posts. I feel like you've learned a lot from her in going through all that grief and everything.
Let's talk a little bit about Navia and how she shaped who you are today as a speech therapist and in general.
Liv: Totally. Thanks so much, Bec, because I love talking about her. Thanks for giving me that opportunity to do so. I always grew up around people who communicate in different ways, growing up signing.
My sister, Navia, was someone who was born with cerebral palsy. For those of you listening who don't know, cerebral palsy is a motor disability that affects things like balance, tone, and coordination. I know when I was younger that it was the most common motor disability in childhood.
I don't know if that's still the case—I would assume so—but I know it can affect things like walking and talking, so my sister used a wheelchair to get around. She was nonspeaking, so she communicated in different ways using vocalizations and eye gaze. She had an augmentative and alternative communication system, so she used a computer to communicate.
Like you said, she sadly passed away eight years ago right when I entered grad school, which was a really tough time because she was really the sole reason why I got into this career. Losing such an incredible person and someone so close to me was a very, very hard transition.
Becca: Moving away from home and starting a crazy program.
Liv: Life times things perfectly.
Becca: I assume that she would have had a big team of people to work with as well, so you got introduced to different jobs that you could have in helping people that have disabilities.
Liv: Totally. I feel like there are different ways. You figure out what you want to do in life, and some people read about it or know someone who does that job.
I got the privilege of seeing it through the lens. I did attend all of her speech therapy sessions, OT sessions, and PT sessions, so I got really exposed to her team. That was the norm growing up. It was always like, yeah, go into therapy this day. I go with them all the time.
Becca: It's nice that you always went.
Liv: And participated. Looking back, I was probably that annoying human that was in the corner trying to take all her turns. She was an incredible person who had the best sense of humor. It was really cool to grow up with that kind of peace and then come to realize I wanted to go into that field.
I think my main reason for being interested in this field is that I loved growing up with someone who couldn't speak and communicated in different ways. I feel like a lot of people, unfortunately, underestimated her because she couldn't speak, didn't take the time to get to know her or how she communicated, or maybe felt intimidated by how she communicated and didn't know how to approach her.
I just admired her ability to always connect with other people and reveal her confidence and personality coming out. She would go to doctor's appointments and call the doctor sexy. I loved her confidence and ability to make people laugh and just express herself.
Becca: She always had a big personality and yet was nonverbal. If you don't really give that person a chance to express themselves in the way that they can, then you don't really get to know them at all.
Liv: Yeah. It truly gave me an appreciation for the different ways people communicate and the importance of having access to communication. It's just a fundamental human right in order to have a voice in this world.
Becca: I remember meeting you. We were both trying to find a place to live in Vancouver, and we were like, so why did you get into the program? I remember just hearing your story, and I was like, this made so much sense. I'm like, well, my brother's an ENT, and I didn't really know what I was going to do.
Liv: We all have our journey.
Becca: But I remember hearing that story. It stuck with me. It's cool to see where you've taken it.
You grew up with your family that had different disabilities. How was that news given to your mom if you know? How do you guys talk about disability in your family?
Liv: I love my mom so much because she celebrated our unique differences. She was so open to talking about growing up, but I know she wasn't always like that. My brothers are different because she's always been exposed to Deaf cultures, so when she actually was told that my brothers were Deaf, she said that the audiologist apologized and said I'm so sorry. They have profound hearing loss. She was like, great, it's fine. You have nothing to apologize for. This is fabulous.
Becca: I remember you saying your grandparents were thrilled.
Liv: They're so happy. They're like, yay, another someone in our family member that communicates or hears like I do and is like me. That wasn't ever sad.
I know when my mom found out about my sister's having cerebral palsy, she described it as coming down with a hammer. They talked about it very much through a medical lens where they talked about deficits, apologized, set all this negative stuff, what she can't do, and she'll never be able to do this. I know she went through a period of time of feeling and grieving what she thought her life was going to be like.
Becca: It's almost like you have a person and it's like, here's a barrier, and here's a problem, problem, problem, and it's all these things pointing at the person.
Liv: Totally. It's so negative. Imagine you're having a baby for the first time or you're learning about yourself, and everyone around you that you're talking about in the medical community is just saying negative things. Of course, you would feel scared and anxious.
She said all of that went away the moment she met her. She was just like, oh, this isn't scary. This is my baby. I think it's just built up. Sadly, I think a lot of the time in medical professionals, disabilities are looked at through a medical lens and a very deficit lens and not so much a strength-based or come from a good place.
Thankfully, my mom was so open about talking about differences and disabilities. She was so open about how we all learned and talked about it with us, which I think really empowered us. She would celebrate World Cerebral Palsy Day and those kinds of things.
I felt more confident and very comfortable around people with differences, and it even set the stage for when I was diagnosed with dyslexia and ADHD. I didn't have negative feelings toward it. I was just like, okay, this is how I learn now.
I know more about myself, but other people had negative ideas about it. I know one of my friends was like, you got scholarships, and you were smart. I'm like, well, it's because I am. I just learn differently than you. I have a hard time getting information from written text. I do better auditory. It takes me longer than you to do certain tasks, but that's fine.
Even reflecting on when I was diagnosed, the doctor who sat me down and went through the tests and reports was all about the lowest percentile and did the worst in this. It’s basically what I took away from that. He talked about how I won't be able to do this.
I left that meeting, and that was the first time in my life that I actually felt ashamed of myself. I was like, oh my God. I felt like I couldn't do it, and I felt really overwhelmed. Then, I had an appointment with a learning strategist who was someone at the university who helps students with learning disabilities.
She sat me down, introduced me to other people with learning disabilities, hooked me up with resources, talked about my learning style, and was like, this is how you learn. These are things you can do to help yourself. These are ways you can advocate for yourself. After that conversation, I left just feeling still empowered. I remember thinking there was nothing wrong with me. It's the society that can't make accommodations and hasn't figured it out.
Becca: We live in an ableist society. It's one thing to need certain norms for things obviously, and we both have a scientific brain, so there is a need for that, but it's also not everything. It's really important that you don't always focus on numbers, negative things, and barriers that are going to be in the way, put on a different lens, and think about possibilities and what you can do with this knowledge that you now have about yourself.
Liv: I think healthcare professionals have such power. We can totally reframe what disability is. It's not a bad thing, and it's not a negative thing. I work with a lot of families who get diagnoses of hearing loss, Down syndrome, autism, and all these things, and 99% of the time, they're telling you whoever's delivering the information is framing it from a deficit base and is apologizing. I just think we need to approach it.
I had one mom who said that she never once heard congratulations when she was pregnant with her baby. Not once. Everyone was just apologizing when she found out she was going to have a baby with Down syndrome.
You're going up against a system that's very ableist when we as healthcare professionals, I think, have such a power to set a tone and talk about it when we're giving information to families or our clients. It needs to go towards a strength-based model going further. I think we just have such power to influence and promote someone's positive self-identity as someone with a disability.
For example, a lot of the time, people will talk about the students I work with as having restricted interests, but I'm like, no, they are experts in this topic.
You show me another student who can name every Will Smith movie, the year it came out, and all that stuff. They'll say, he doesn't make eye contact. Another way you could say it is he prefers to look away when people talk to them.
I think when you frame things in a strength space, you're acknowledging how they learn and allowing them to feel empowered and positive about themselves. You should never make someone feel shameful for just who they are.
Becca: I love that. It's really nice, which is a good segue into your current role with the Down Syndrome Resource Foundation, which is in Burnaby in BC. How long have you been with them? What is your role there?
Liv: I work at the Down Syndrome Resource Foundation. We see people with Down syndrome throughout their lifespan, which is pretty unique. For example, the youngest on my caseload right now is a 1 ½-year-old, and I have worked with adults as well in their 30s and 40s. That's pretty fun. I've been there for about 3 ½ years now, and it's absolutely flown by.
Becca: Time goes so fast.
Liv: So fast, especially when you're having lots of fun. I've worked with people one on one in therapy, but then I also run groups as well, a lot of the social groups and a program called Let's InterACT, which is a theater and improv program.
Becca: You've taken your master's research and your love for theater growing up, which we haven't really touched on. You were big into improv and have combined those two to create this project. I know it's not probably the right word for that, but you created this group through working at DSRF. I think it's so cool, so let's tell everyone what Let's InterACT is and what it's about.
Liv: My pleasure. Let's InterACT is an integrated program where people with Down Syndrome and without Down Syndrome improvise together. We come together, share, explore, and jam. We do all these fun theater exercises. We improvise, create scenes, and make each other laugh. It all came out from my main research.
I've always been a theater nerd and into improv. What actually sparked my interest in the research side of it is I started to run these improv camps through a government program called Community Living, which is support for adults with developmental disabilities.
What I was noticing was as my sister is getting older and older, I noticed fewer and fewer opportunities for her. A lot of the time, there is tons of support when you're school-aged, and as you graduate high school and transition into adulthood, there are lots less structure, and there's less support.
There wasn't a lot available to her at the time, so I was like, well, she loves theater and improv, and she has friends that like it, so I got a bunch of friends together and started doing these improv camps. Then, I started noticing this really magical transition in people who would participate in the program. Their families would come to watch them, and at the end, they'd be like, who is that competent person on stage? Who's speaking in front of people? I couldn't imagine them doing that.
The feedback was really positive. I saw so much growth in the participants that I was like, there's something to this. I took that and looked into how I can use this as an alternative therapy tool because improv is interacting with others that rely on no script. It relies on reading social cues and responding, kind of that give-and-take relationship.
I have lots of fun doing it, and I feel like everyone in their life at some point should do an improv class. It's life-changing. It's incredibly reinforcing and can become a really good tool just to become better listeners.
Becca: It's cool. You get to be someone else and yourself. I used to be in acting plays and stuff growing up. That's not improv, but you would become this character. You're fully immersed in it, so you're not really thinking about anything else. It totally is a form of therapy.
How does it work? I know there's this thing about "yes, and...," and there's a really good analogy there. The last time we spoke, you had this really good analogy for "yes, and..." in terms of improv and how that works.
Liv: There are some golden rules in improv that I feel are really transferable to everyday life. The number one golden rule is to say "yes, and..." to your teammates, meaning that you are accepting what they're saying, and then you're building off of that.
I feel like it's a good life tool because it made me be more collaborative with others and more respectful of other people's ideas or perspectives in meeting them where they're at and then building on there instead of pushing my own agenda or shutting down ideas. I feel like if you are more willing to work with others, they're more willing to work with you.
Becca: It's the opposite of "no, but..." It's like, no, let's do something else.
Liv: Totally. I think there are a lot of cool rules. We always say there are no mistakes. You can say anything, and you just feel accepted, which makes everyone feel like they're supported. It's a safe space. There's a lot there that's really magical.
Becca: I would imagine that everyone participating really looks forward to it. How often are you guys doing Let's InterACT?
Liv: We jam weekly. It's the same people that come. We do these little blocks, we get our own troop, and we create our own name. That way, it builds consistency and we get really close as a group and build what we call a group mind. We work together.
It's really cool to see how we all fit as one. Every week, we come and jam for 90 minutes, leave it all on the stage, and then at the very end, the improvisers get a chance to invite their family and friends to come to watch, so it's always really fun to showcase what they've been working on.
Becca: They can see how far they've come and how much it's helping. That's so cool.
Liv: It is the highlight of my week for sure.
Becca: So it would have been last night.
Liv: Correct.
Becca: Do you have a funny story that you can share from last night?
Liv: First of all, I should make a disclaimer that I feel like improv isn't the same as stand-up comedy where you can tell a joke or what happened.
Becca: Yeah. You almost have to be there. Maybe a lesson learned or something from last night.
Liv: One of these improvisers in particular is so funny. The way his mind works and how fast he is is so funny. One person was pretending to be a book, but she was doing it out of her face, and he was like, oh, she's on Facebook, everybody. That was something I would have never come up with. They're so talented and so funny. Everyone that comes out, I admire them so much and just their confidence too.
Becca: So cool. That's awesome. You have so much experience growing up with people with various disabilities. How can we advocate more for people with disabilities? What language can we try to use and avoid? I know that there's sometimes this fear around saying the wrong thing or even using the word disability. How can we do better in this space?
Liv: I can only speak from my experience perspective, but I think one thing that is important to acknowledge is that everyone's individual experience with disability is unique. Recognizing their individuality and how they identify is really important.
Whenever I have a student observing me, they'll always make a comment about how each student is so different, and I always say, yeah, if you've met one person with Down syndrome, you've met one person with Down syndrome. Every single person is unique.
I think as healthcare professionals, when we're getting our education, there are a lot of generalizations made in education like this group of people is like this, but we need to remember that everyone's perspective, experience, and how they communicate is different. You mentioned right or wrong.
An example, for instance, that we learned in grad school was that we were always taught that a person's first language is the etiquette, but you go out in the community and talk to people with disabilities. There are a lot of people that would prefer an identity first language. For example, someone who is autistic might want to say I'm autistic instead of I'm a person with autism.
Even our family will say my Deaf brothers or my Deaf family. That's how we identify because it's a part of our identity and culture. Even myself, I'm dyslexic, and I'll say, ah, dyslexic SLP brain and that kind of thing.
I think just listening to the people, the community, and the individual that you're serving. There are lots of reasons why people prefer how they want to be addressed or the language they use, so just honoring whatever their choice is.
Becca: Asking the question.
Liv: Totally. It shows that you want to do right by them and it shows that you care. Don't be afraid to ask. Language matters and should be valued whenever working with anyone.
Becca: That makes a lot of sense.
Liv: We definitely still have a long way to go, but if anything this past year, it's taught me that we have to do a lot of unlearning and listening to our clients and the people we work with because even though we're healthcare professionals and maybe the "experts," those people we work with are the experts in their own lives and their own disability, and sadly, a lot of times, they're not included in decisions made about them.
I've been guilty of it too where I've not included a student in decision-making with the goals that we're working on, or I write a report. I've been doing a lot of reflecting on this like, is the information that I'm sharing accessible to that student? Do I need to add visuals to it? Do I need to use a different language?
If we continue, the goal is always inclusion and amplifying those voices. And eventually, we'll hopefully get there, but it's going to take a lot of time.
Becca: It will take a long time. Lots of learning and relearning, but I think as long as we know that we can always do better, then eventually, we'll get there.
Liv: Definitely. I can send you some really great disability [...].
Becca: I was going to say send me some links. We can link them at the bottom so people can check them out. I know you have lots of good social media pages too, so you can send those, and we can include a link for that as well.
Liv: I would love to.
Becca: Cool. Thank you.
Liv: Thank you for letting me share.
Becca: Thank you very much for coming on and chatting for a little while. It's really nice to see you.
Liv: Likewise. Thanks, Bec.
Becca: You're welcome. We'll see you soon.
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