Beyond the Voice

Beyond Beautiful: Disability, Liberation, Love

Season 2, Episode 8 - Beyond the Voice

🎧 Listen to the Episode

🧭 Episode Summary

In this episode of Beyond the Voice, I interview Ceslie Martinico, a 30-year-old blogger living with Spinal Muscular Atrophy Type I, diagnosed at just six months old. Ceslie communicates using a Tobi Dynavox device, and our conversation invites listeners to slow down, listen differently, and challenge assumptions about voice, intelligence, and autonomy.

We talk about what it means to be fully heard in a world that often rushes communication. This episode is a powerful reminder that access includes time — and that every voice deserves space.

🎙 Guest

Ceslie Martinico is a 30 year old blogger living in Central Florida. At 6 months old, she was diagnosed with Spinal Muscular Atrophy Type I. She uses a wheelchair for mobility and communicates through her Tobi Dynavox, an assistive communication solution. Ceslie loves everything Disney, especially Disney Princesses.

💬 Key Themes

• Redefining Voice & Communication

• Access as Collaboration

• Identity, Joy & Representation

• Challenging Assumptions

📜 Full Transcript

Mandi: Welcome to Beyond Disability Liberation Love. I'm Mandi, your Queer Christian Disabled host. This episode is called Beyond the Voice. And before we begin, I want to take you behind the scenes for a moment. For every guest on this show, I send a list of possible questions based on the theme we're exploring. I always send more than we'll actually use. Most conversations run 45 minutes to an hour, and then we shape them down to about 30 minutes for the final episode. But this interview was different. Today's guest is Ceslie Martinico. She's 30 years old and was diagnosed with spinal muscular atrophy, type one when she was just six months old. She's a blogger who writes openly about her life. She loves everything Disney, especially Disney princesses. And she communicates using a Tobii Dynavox, which you'll learn more about during the interview. As an accommodation, Ceslie requested the exact questions ahead of time so she could prepare her responses in her communication device. That meant this wasn't just a conversation, it was a collaboration rooted in access. It's also the first time I've interviewed someone using a Dynavox. Even with prepared responses, our conversation required more time, sometimes 30 seconds, sometimes a full minute. That might not sound like much, but when you're used to rapid back and forth communication, it requires a completely different skill set. You have to slow down, you have to sit in silence, you have to anticipate differently, and you have to truly listen. So before we go any further, I'm going to sit quietly for 30 seconds.

Mandi: That space, that stillness, was truly part of this episode. So while I made edits to keep the length of this episode shorter, please be aware of this difference. Cecily's commitment to sharing her story through blogging, through advocacy, through technology, through joy is powerful. Her voice exists beyond sound, beyond speed, and beyond expectation. I hope as you listen, you appreciate the depth of this conversation, the intention behind every response, and the access, centered care that made it possible. May this episode invite you to slow down, to expand how you define voice, and to seek out the beautiful stories that come in all forms of communication? Let's go beyond the Voice.

Mandi: Hi, Ceslie, Welcome to Beyond Beautiful. I'm really happy to have you on the show today. How would you like to introduce yourself to listeners who haven't met you?

Ceslie: Hi, my name is Cecily Martinico. I'm 30 years old, I live in Central Florida and I'm a blogger about my outgoing life living with Spinal Muscular Atrophy, Type I.

Mandi: Thanks so much for sharing that. So I know you had told me before that you were diagnosed with Spinal Muscular Atrophy Type I at 6 months old. How has that shaped your life and how has it not defined you?

Ceslie: Living with Spinal Muscular Atrophy Type I has shaped my life by knowing that God made me perfect just the way I am in his eyes, and that he loves me unconditionally.

Mandi: I really appreciate that. And as someone who shares in a similar faith and a belief in God, I think it's really important to always kind of go back to our faith and our understanding that we all have a purpose. And I really appreciate you lifting that up. So you use a communication device. Can you tell us about it and how you first started using AAC?

Ceslie: Yes. So my communication device, which is called Eterby Dynavox, is a computer like device. And I access it through a little finger switch that connects to to a special bar. And I lightly tap my right pointer finger upwards and downwards on the switch to be able to scan to which button that I want. Because I use it for corner scanning method. I began using the Tobii Dynavox when I was three years old. And the evolution of the size and the features that the device comes with ever since I got my first one till I got the one that I use now is indescribable.

Ceslie: That is really amazing. I am not as familiar with the Dynavox that you use, but I do remember when I was in high school having a friend who used a head pointer and he essentially wore like a baseball cap that had a long kind of stick that would come out of the front and he would be able to use that to tap on the different buttons on his Dynavox. And that's how he communicated. So I love hearing that you're able to just use your pointer finger and have these light movements and that there's so many ways to access even the same technology. And I'm sure it has significantly evolved since I connected with that friend in high school. What has changed in your life once you had access to a communication device?

Ceslie: Ever since I got a Tobii Dynavox, I had the ability to make friends say stuff without having my parents to say what I want for me, go on the Internet and use my social media platforms. You see, the Tobi Dynavox didn't have any access to the Internet when I got my first two devices. Cause I get a new Tobi Dynavox every five years or so. But the devices that I got back when I was in middle School and high school didn't have access to the Internet, but you had the connector flash drive to the device in order to get access to the Internet. So now with the past two devices that I've gotten ever since being out of school has included access to the Internet within the device.

Mandi: That's really amazing. And I think for folks who are not as familiar with these types of communication devices, they probably don't realize what the difference is between having a device that is connected to the Internet and one that isn't. And hopefully I'm not speaking out of turn, but I believe when these devices were not connected to the Internet, essentially the words or phrases that were in the system were pre programmed and uploaded, but there weren't as many options for being more dynamic and being able to communicate more dynamically because you were more limited and by what was already on the device. Whereas having the device connected to the Internet means that it's almost like, hopefully I'm not making a wrong kind of comparison, but almost like an AI type of machine now where you're able to get words or phrases more dynamically more quickly because it is connected to the Internet. I'm hoping that that's correct to say.

Ceslie: Yes.

Mandi: Awesome. Thanks so much. So hopefully that helps listeners to understand a little bit how special it is to have access to the Internet for that purpose. So what do people most often misunderstand about non-speaking individuals?

Ceslie: I think what people most often misunderstand about non speaking individuals is that they aren't intelligent and that they aren't capable of making friends.

Mandi: It's really interesting to hear you say that because as I've been doing these

Mandi: interviews with different folks, I have noticed that across disability types that many people feel like they are misjudged, especially when it comes to their intelligence or their capacity to have any type of relationship, whether that's friendships or romantic relationships. So I have found that to really be a consistent misconception that people with disabilities find themselves experiencing, particularly from non disabled people. So thank you so much for sharing that in talking more about this misunderstanding and people underestimating intelligence. Have there been moments when someone underestimated your intelligence or capacity because you don't use verbal speech?

Ceslie: Yes. I honestly feel like people who don't truly know me often underestimate my intelligence and what I'm capable of because I use a communication device.

Mandi: I'm really sorry to hear that happen. I really can't begin to understand that experience as someone who is able to speak. And I do think it's so unfair for people to make assumptions that just because someone communicates in a different way automatically means that they are less intelligent or less capable and clearly having access to your communication device. And with the evolution of technology and being able to now connect your device to the, the Internet, it's clear that you are very articulate and able to communicate and build relationships, even if that looks like a different process. So I'm really sorry for that experience and I hope that this episode allows people to start to rethink how they build relationships and what it means to be intelligent and be in community with different types of people.

Mandi: I want to talk a little bit about moving from friendships to more romantic relationships. What would you say to someone who assumes disabled people aren't desirable or capable of deep romantic relationships?

Ceslie: I would say that people with disabilities also have feelings and desires just like any other able bodied person and that we deserve to be loved and have marriage despite having to find different ways to show love to us because of our disabilities.

Mandi: Yeah, I really appreciate you saying that. It kind of falls. I think it falls on both people. right? It falls on our partners to find creative and other ways to show us love. And it also falls on our partners and us to collectively decide like, what does love and intimacy from the disabled person look like in return. And I think it can really make us reimagine or rethink what it means to be in a romantic relationship or an intimate relationship and how we define those. And I don't think it has to be defined in maybe the standard or traditional way that we have typically defined it. So thank you so much for uplifting that. You shared that you want people to know that you are worthy of love and marriage. Why is that message important to you?

Ceslie: That message is important to me because I wholeheartedly believe in love and that I will find someone who will love me no matter what. I mean, just by seeing my parents still be in love with each other makes me want to be in love with someone. I mean, I want to grow old with someone and everything. I pray that I find someone someday who has similar qualities. As to my dad, can I also say this as well? I've seriously fallen in love with someone before, but he doesn't love me back, unfortunately.

Mandi: Oh my goodness, that can be so hard when we have feelings for someone and they don't reciprocate it. And I think it's important for people to understand that that is such a, like typical human experience. I don't think that is unique to just you as someone with a disability. But everyone experiences that heartbreak. And I think non disabled people have feelings for people who don't always reciprocate. So I want to make sure that listeners don't misunderstand that, that they can really resonate and relate to that. Not even just because you are a person with a disability, but just as a woman experiencing, you know, those deep emotions for someone who may not reciprocate. And how many of us in this world has that happened to. And I also really love you sharing about your parents. I think that's such a beautiful thing to hear when couples are able to still show each other and demonstrate that love. And it really speaks to to how much our children really do see those types of relationships. Like how precious that is to hear you say you want to be with someone who has similar qualities to your dad. So I really appreciate you sharing that. That's so beautiful. And I don't know how long your parents have been married for, but it sounds like they've been together for quite some time. And it's really sweet to hear how you see them and their love. So in what ways has your life challenged people's assumptions?

Ceslie: Some of the ways that my life has challenged people's assumptions about me are that my parents don't keep me from anything. I get to go to a lot of places like Disney World, sports, games, concerts and et cetera. I get up in my chair every day and I make so many friends. I'm friends with a few celebrities even.

Mandi: That is really great to know. I will have to have you name drop after the episode to know who your celebrity friends are. But that's really cool. And I do think sometimes people imagine that people with disabilities are just what used to be called like homebound or just like stuck in our homes or not able to go out and build relationships and do things. So I love that. And especially for you as someone who is using a communication device to speak like just how much you've talked about your friendships and building relationships, the fact that that is important to you the same way that it's important to anyone else. And I'm just so grateful that we are in a society right now where we have access to these types of technologies. And I think about folks who may be don't have that, whether because of financial limitations or because of a lack of equitable access to healthcare and health insurance and how challenging it must be for someone who is non speaking if they don't have access to the types of communication devices that you do or that others do. And so it's really important that we are constantly thinking about equity for everyone. But I love how you've shared how important relationship building is to you, and I'm so glad that you are able to do that and that your family empowers you to go to concerts and do all of these different activities and sporting events very much into women's basketball. So I love going to those games and it's a really wonderful experience. So my last question for you today is if listeners remember one thing from this conversation, what would you want it to be?

Ceslie: I would want it to be that you're capable of doing anything you set your mind to, despite your disability, and that your disability doesn't define who you are as a person.

Ceslie: I love that. Such a beautiful message. Thank you so much for sharing that. And thank you for taking the time to answer the questions today and be on the show and just share more of who you are and be so vulnerable about your disability and your different ways that you communicate and build relationships. I really appreciate it and I look forward to staying in touch with you and continuing to learn more from you.

Mandi: Thank you so much for tuning in. Thank you for slowing down with us. Thanks so much for being part of the community that believes disabled stories matter in every form they're told. If this episode, or any episode so far has resonated with you, I have a simple Share it. Send your favorite episode to a family member, a friend, a colleague. Text it, email it, post it. These conversations grow because you share them them. And I have some exciting things on the horizon. I'm planning to host a virtual film screening featuring a powerful documentary about the value of disabled lives, followed by a community conversation. If you're interested in joining us, please make sure you're following me on Instagram at intersectional_access or join the Beyond Beautiful Collective on Facebook. Both will be linked in the show notes so you can stay connected when registration opens. I'm also in early conversations about what may become my very first business collaboration, one that could be especially beneficial to many of you living with chronic illnesses. I'm still building it thoughtfully, but more details are coming soon. And don't forget, this podcast is participating in Podcastathon. That special episode launches March 15, so go ahead and set your alarms. You're not going to want to miss it.

Mandi: And next week we're continuing the conversation with a guest who is no stranger to the law, a disabled woman whose story challenges systems and expands what justice can look like. That episode drops next Sunday at 5pm Eastern until then keep listening, keep learning, and keep making space for stories that move us beyond what we thought we understood and remember. Disability, liberation, love are always beyond beautiful.

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