Title:
From Indonesia to Netflix: Christopher Tjajadi an American Dream

Subtitle:
The Power of Representation, Storytelling, Technology and Navigating Accessibility

Transcript:

Alycia Anderson: Welcome to Pushing Forward with Alycia, a podcast that gives disability a voice. Each week we will explore topics like confidence, ambition, resilience, and finding success against all odds. We are creating a collective community that believes that all things are possible for all people. Open hearts, clear paths.

Let’s go.

Welcome back to Pushing Forward with Alycia. I am Alycia. I’m so excited about our guest today, Christopher Tjajadi. We met last year when I spoke at Netflix, I was on stage doing my thing and the door opens and this amazing human being, Christopher rolls in and I all of a sudden feel like I’m seen.

I don’t know, like it’s not very often that I’ve been in a workplace environment where. There’s another wheelchair user that just rolls on in and is participating. So that was a really cool moment for me by itself, but then we met after the event and he has the coolest story. So I had to have him on.

He was born in Indonesia. He was diagnosed with spinal muscular atrophy when he was two years old. He works in technology, he works in art. He’s all about representation, and he just has a really cool life story of becoming who he is. And I knew that our audience would just love to take this journey and learn more about him and his life.

Christopher, thank you so much for being willing to come on and share your story.

Christopher Tjajadi: No thank you. Alycia, I just wanna say that moment in time where I saw you talking at the office it was actually a very special moment to me too, and came late too. So I guess I made a grand entrance and bothered you in your presentation. So I just thank you so much for that.

Alycia Anderson: I loved it. That moment. We need so many more moments like that in the workplace specifically where we’re seeing more of us wheelchair users specifically just like cruising in and being there and part of the employee environment. And I know when I worked in tech, like I was always the only one too.

I could count on, I count on one hand in the 20 years I worked in tech, I saw three wheelchair users the entire time. So it was a moment for me and it was just really nice.

Christopher Tjajadi: It was definitely, I was literally just, working and then I was like, okay, Alycia, I see Alycia, you coming in and then you being featured as guest speaker. I was just gonna watch you online. And then something within me was like, when, especially when I see you, I just need to be there in person.

I’m so glad that I was there and like when you said that you felt seen strangely enough, I also felt like I was seeing you there. And so thank you so much for even coming to speak. So

Alycia Anderson: Community, we gotta stick together, right?

Christopher Tjajadi: Yes,

Alycia Anderson: Okay, so there is so much to talk about. I think we just need to start with your childhood growing up in Indonesia and your disability and can you just talk about that experience and we’ll start there. Look back in the mirror.

Christopher Tjajadi: Yes. And I was born in Indonesia. I was born in a small little city in the island of Java. My father is a pastor and so we moved around a lot as a family because he would go to different cities doing ministry work. And I remember my parents telling me that I start, I think when I was really young, I started walking very late.

I think I was around 17 or 18 months, and even then I had to get up in a very weird way. And so my parents would take me to different doctors all over the cities and actually all over Indonesia. They did not know what it was. They couldn’t figure out why I was a lot slower than other babies. And then I think eventually they took me to Singapore. And that’s where I was diagnosed with spinal muscular atrophy which is basically it’s something that is preventing my brain and my body to produce a certain protein that would allow, I think my brain and my muscles to work in coordination with each other, which then leads to the atrophy of the muscles itself.

And so of course growing up I didn’t really know much about that. I just knew that I was a lot slower than other kids and in Indonesia, I think back at the time, I was actually able to walk around. And of course the classes are all in different floors and so I would, really slowly climb the floors and go to the different classes. And I actually was bullied a lot the kids, especially in PE classes because I was very slow. I remember one or two moments where the teachers would come in and try to stop the kids from doing that. But that sort of, I think, became pretty fundamental to my character as well. I remember always being the different child the child that is cornered.

And I always had the expectation that I just can’t do as much as other kids. Some point in time, my family decided to go to the United States. I think it was around 2010. I was in middle school. I got here and this is, I think the first time where I’m introduced to many different cultures, many different types of people. And there’s a lot there already because like not only am I changing culture, but there’s also I think with a lot of the kids there they all had very different background, very different childhood. The language is different. And I think this is also a time when my atrophy start progressing worse. I started using a wheelchair, sometime in my late middle school. And I was very alone. I didn’t have a lot of family and friends. We have no extended families here. There was the language barrier, the culture barrier, and also I was battling my decaying body at the time. I think a lot of that really shaped who I am today.

Alycia Anderson: Can we talk about the cultural differences. That’s a pretty significant shift, I think, at a young age to go from living in Indonesia, going to school, being bullied, which happens to a lot of us as disabled kids. What were the cultural differences and I guess similarities also in navigating school as a disabled kid overseas and then coming here and having to do the same thing. Can you talk about that a little bit?

Christopher Tjajadi: Yes. I’m so glad you asked that and to continue the story, this is where I think I really realized the contrast and the difference. And so I think about 2013, my family actually went back to Indonesia, and this is after I was basically like always on the wheelchair. And the moment that happened, I remember when we were going to Indonesia back, so I already had my power chair. The very first thing I immediately noticed as we were getting off the plane, they realized, What is this machine like in the airplane? They were like, and I remember waiting, right? And they were like, oh, I think we’re, there’s some issue with getting your chair off the airplane. They did not have the tools or devices to get the wheelchair off from the airplane.

And so they had 10 guys carry it out from the cabin down into the floor. I was told, and I remember we had to put that chair in the car and that was also weird ’cause we’ve never seen such devices. And I remember like rolling in an airport and everybody was looking at me weird, like really more weird than usual ever.

And so that was very interesting. And so at the time the plan was for my family to stay in Indonesia again long term, but immediately we realized how much different, there’s so much lack of access. So immediately I, we couldn’t go to restaurants. There were so many stairs everywhere. I was at home at this hotel and like every time we wanted to go eat out, it’s okay, that’s an issue.

And then I think at the time I was, I think in high school, so they were trying to get me into enrolled into a school. And when the time when we went to school, they’re like, oh, we have no elevators in this school. And there’s seventh floors and all the classes are littered all throughout the floors.

And of course the teacher was trying to like work really well with us. Okay, maybe we can move of Chris’s classes on the first floor. And that was something that was in discussion as well. And it was also interesting. My brother has dyslexia and when my parents talk to them, they’re like we were not equipped to freak that sort of thing.

We don’t even know what to do. And it’s interesting you ask that there’s this, almost in the US there was so much of those access that I was given at school. I didn’t have to think much about it. But the moment I came back to Indonesia at the time, I realized how much was not built. And so I thought that was super duper interesting. And of course, like my family decided, you know what, if we stay here in Indonesia. Chris is probably gonna be homeschooled. Chris is probably gonna have to find ways to work from home, and that’s not a life that we want our children to go through. And so I truly saw like ultimate typical immigrant story of what we’re gonna go back to the US. We’re gonna, we’re gonna seek that accessibility that is for Chris, and we’re just gonna go. And honestly, I’ve been carrying that burden with me. And I saw that ultimate love that was expressed by my family.

And remember, I think this is something that you’ve spoken about, a little bit about how your parents are the one that had pushed you and allowed you to realize I can do what it seems to be impossible for me. And I felt that when they did that to me. And yeah, it was honestly a really a shock.

Like I, I do think that we take things for granted here because there are so many good works that’s been done for years by a lot of different people here in the United States, and I feel like I am reaping from those things that they fought so hard for.

Alycia Anderson: Yeah.

Christopher Tjajadi: And me going back to Indonesia, realizing, oh my God, there’s so much work that needs to be done there. I am incredibly blessed and lucky to be able to do the things I am doing here today because there are so many other people that can also benefit from what I’m experiencing as well.

Alycia Anderson: Totally, and I think that realization of the privilege that we have here is something that we take for granted as disabled people if we don’t have an experience living somewhere else. I lived in Belgium and in Europe for a couple years, which I’m sure still had more accessibility than you had in Indonesia, I assume.

There would be restaurants that would have the wheelchair emblem where I thought it would be accessible for me to use the restroom, but I would roll in and they would say, no, we just allow you to come in. And so that like cultural, not only accessibility, but mindset, you know, accessibility and inclusion of disabled people globally is it’s so different.

And so when I came back I was like, wow. I’ve been taking for granted these privileges and like you said, the people who fought for us to have accessibility and technology and the tools for us to function. It’s so important for us to also be advocating that they never go away because it is literally our freedom.

Christopher Tjajadi: Yes. Yes.

This is why I’m so glad that you even asked me to be on the podcast because I’m realizing speaking about it is very important. It’s just to touch a little bit more on the culture bit that you were talking about. I do serve a lot and volunteer a lot at Indonesian churches.

And so I do meet a lot of Indonesian older folks and talk to them a lot. And one of the very first things that they always ask me without fail is always, oh, how did you end up in a wheelchair? Like literally the first thing, which is, I think within the American culture, that’s not really something that is often talked about us openly. And at first I remember thinking like I think my first initial reaction was like, oh, is that all in me? But then I started to realize wait a minute. Like obviously it’s gonna be one of the first thing that you’re gonna ask. It’s the most visibly different about me and I’m starting to honestly really, appreciate the curiosity that those people have.

And I almost wish that more people would even ask and talk about it. And, I even find myself often not talking about it because it is treated as something that, oh, it’s a bad thing and it’s a sensitive thing, therefore we should not talk about it. But I’m really realizing, no, this is who I am.

This is a huge part of my life and my identity. And having those older Indonesian folks talking to me about it openly is really opened up my eyes about maybe we should also apply this sort of mentality, as you were saying, even here, and I wish you’d be speaking more about it.

Alycia Anderson: And I think that’s where acceptance and understanding comes in. And I agree with you. My whole life, people have. Looked from afar and assumed I’m sure the wrong things. And if we just are open to have a conversation about the different live paths, I’m sure there is something about these people too at church that you don’t know.

And if we’re more, more open to sharing, then we understand. And it’s not, it doesn’t turn into this taboo situation. And I agree with you. I do think that we need to be more open in exploring each other’s backgrounds and understanding it. Because if not, it just keeps us in this place of just being different.

We’re stuck in this space of separation from community, so I actually love that you’ve got that perspective. ’cause I know a lot of disabled people don’t wanna feel like they have to share, but I do think. That when we want to share we should, because it’s advancing the understanding and the education, the lack of education that is out there in this lived experience.

So I think it’s great that you live like that.

Yes. The fact that it’s not taught as often, it is as if it is something to be ashamed of, right? Something that is meant to be hidden.

Alycia Anderson: Yeah.

Christopher Tjajadi: And it’s, I think it’s easier for, me at least who is visibly different than others. I can’t even imagine how it is for those people whose disability is not as visual,

Alycia Anderson: Yeah.

It is even much harder to talk to. And I think that’s a whole different world that I think, and there’s a lot more fight and advocacy that needs to be done in that world as well.

That is an interesting conversation. I just spoke at a big event about it a couple weeks ago, and I had somebody come up to me with several non apparent disabilities, and she just said, it’s so hard to get people to believe that I need this, or I’m struggling with that. And so I agree with you that topic is needing to be amplified louder and louder. And as much as I fought being the disabled symbol, the wheelchair, it probably does open up the conversation a little bit easier and people just automatically believe that you’re disabled.

Christopher Tjajadi: Oh, I was gonna ask you, I am curious, like from your end like I do think that disability should be talked about more and accessibility should be talked about more. Where do you think we are as a country in that journey? Like especially because this is what you do, right?

This is what you advocate for all the time. So I’m curious from your perspective how that is going.

Alycia Anderson: I think as a country we’ve been, especially in the last several years, we’ve been more open to understanding and challenging and advancing accessibility and the conversation of disability. I think currently we’re in a situation where we’re, potentially moving backwards with some of the narratives.

I think right now it’s more important than ever for us to be sharing our stories and the impact of the path of this life on society, on communities, on advancing everybody’s opportunity to access their life as their body changes. We’re in this middle area, it feels like, ’cause it feels like we’ve been full steam ahead.

Let’s go. And now, so what do you think?

Christopher Tjajadi: I, yeah. I think actually I’ve been thinking a lot about this I think there’s the cultural aspect of it and there’s also the policies aspect of it and, just seeing the continuous distrust. I think with the government for instance, and all the policies and programs the government has been enacting in order to help with accessibility and all those other things has been to me, has been very sad.

I feel when I start school here, I was, my family was so poor, we were on the free lunch program. Really helped a lot. My brother could not read at all because of his dyslexia but there were classes that was provided for him and teachers provided for him that was helped by the government so that he can start learning and being able to be keeping in pace with his peers. I am able to get treatment for SMA here in the United States because of Medicaid. Spinraza is the medication that I’m taking was first introduced in the US in 2017. If I was in Indonesia, actually still in Indonesia right now, I would not be getting this treatment at all.

Alycia Anderson: wow.

Christopher Tjajadi: And so it’s, we it’s interesting. I have another friend that I was talking to prematurely gave birth to her son. And she was talking to me a lot about how much, without all the hospitals and all the facilities that we have here, and also the insurance that she was able to be on her baby would be dead. And, it’s interesting to see how much, like all of these things it’s, I think it, when I started really deeply looking into it, it’s actually backed up a lot by our government. Of like things there that have helped fund or even set policies to ensure that like people who need access are given access.

Culturally speaking today, I mean we’re seeing all over the internet, even throughout the country, there’s a huge distrust with what the government is doing, right? We see it with DOGE, right? With the desire to cut a lot of the different programs that are within the government and who knows what else is gonna be cut out. It’s really hard to understand, at least right now, what that impact would look like in the next few years. And that truly have made me personally very sad. And like you said, there’s this feeling of we’re slowing down and maybe even going in a different direction.

Alycia Anderson: And it’s not only sad, but for me, for our disabled community, for the children that need to go to school and have resources like your brother, to be able to be integrated and succeed in school, it’s not only sad, but it’s frankly terrifying that we could be living, in this life where people that need benefits like Medicaid and medicines, like what does that mean for living, you know? And this is a big scary problem that we need to be talking about right now because major decisions are being made on pulling back things that are literally life or death.

And so it’s not this easy, oh, we’re just gonna cut this that is why disability advocacy is so important right now because people are so still ignorant to the lived experience and what we actually need and what they’re gonna need as they become disabled, I’m really glad that you brought that up and it’s important for us as a community to be talking about it. ’cause it’s scary. Like it’s not just sad at least that’s how I feel. I feel like scared, that people don’t understand enough that it’s gonna affect life, literally, life living.

Christopher Tjajadi: You, like something that is often said to me with some of my friends, they they would always say Chris, if it wasn’t for you, I wouldn’t have noticed that this places is not very accessible. Oh man, like I didn’t really think about it. It’s really hard, I think it’s hard to know what you don’t know.

Alycia Anderson: Yeah.

Christopher Tjajadi: And when you’re super able bodied and you’re able to go to different places, not thinking much about it. Like for me, and I’m sure you do this the same way every time before I go to a place I would ensure and double check, okay, where is it? Where are those places? Is there a bathroom there? Okay. If there’s no bathroom that is acceptable, I need to make sure that I bring this and this. I need to make sure, okay, wait, we’re leaving. Okay. I can’t drive myself so I need to like order like a bus or something to make sure that I can get home and there’s all these plannings that I need to do that I don’t think a lot of people know about.

And honestly, maybe I should be sharing more about so that people would know. and then I think on a larger scale, which is what you were talking about, like this not just affects inconveniences, but it affects life. It affects one’s ability to survive. I just wanna say isn’t it so wonderful that we have all these systems that have allowed life to live right?

Allowed life to like, be fruitful and go on. And the slow crippling of that, that system is very you’re right. I think it is terrifying. And it is also I’m gonna use the word sad again. Maybe I am a very sad person in general, but like

Alycia Anderson: You are not.

Christopher Tjajadi: I find it very sad also that I guess where we are at today, one of the ways that we have to talk, one of the ways in which we have to fight about this is to be loud, right? It’s ’cause, with social media and all that stuff and how people listen today, you just have to be very loud,

Alycia Anderson: Yeah.

Christopher Tjajadi: because there’s so much noise in the world and yes, there are so many other problems that are going on, right? But for the only way for us to get attention or even movement is to be speaking out about it. Which is also, I’m glad like with your podcast, I was actually been listening to a couple of the different stories that are in your podcast. These are some of the things that we need to keep on doing in order to let people realize what they don’t know about.

Alycia Anderson: Yeah, and I think. I like your point too. We need to realize that we need to understand as disabled people that as much as we think that other people understand what’s going on, they actually have no clue. And this education piece is really important. Because once they understand it, they go, oh, that, like with the 5 0 4 Rehabilitation Act, being, trying to be pulled back in multiple states and all of these like things that are protecting access and accessibility among so many other things. When I say to people in my outside world, circles like, this could go away, they go, that would never happen. When I was young, my dad, I was born right after the rehabilitation act was passed, so I’m old, but, and he’s told, he was told my whole life, Alycia, you have no idea how lucky you were to be, have been born exactly when you were, because before then they put somebody like you in an institution and forget about you.

And that is the reality. And so pulling away access and accessibility and Medicaid and

Christopher Tjajadi: Yeah.

Alycia Anderson: that we need is putting us back behind walls. Why is it that we deserve that as humans, like we have so much to offer this world. We have to be talking about these things loudly right now in a way that we need to understand the world literally doesn’t understand what is happening here. They don’t understand that, that Christopher needs a pill, that I need a catheter to pee that, like they don’t understand the magnitude, like you said, of barriers that we have to get through to just. Go to dinner.

Christopher Tjajadi: Yes. And here’s the thing, right? now more than ever have all of the technologies and capabilities and power and economic strength in order to allow to. For all of those programs around accessibility and like you said, allowing people to just get on dinner to happen.

Alycia Anderson: Yeah.

Christopher Tjajadi: Like the fact that I’m able to go to a bus, almost any bus here in Southern California and go to a place to a different place just with my wheelchair. We have that capability. And there’s a super duper interesting manga.

It’s called the Witch Hat Atelier. And it’s a world where, it’s a world of magic and magic has physics in it and whatnot. And, there’s this phrase that is said, so there’s this guy that’s wants to become, a witch and he can’t because he has this illness that makes him colorblind.

And in this world it’s very important for you to be able to see colors to create magic, right? And he’s going through a struggle, there’s this other witch that was like. we can make this work. Let’s work on a magic spell that can allow you to see color and maybe it’s not see color and maybe it’ll allow you to be able to function and follow the dreams that you have to become a witch. And there’s this land that the character said, which was. Magic is to allow you to do things that you were before not able to do. I just realized that is what technology is. And we were talking about technology, right? I think technology allows you to do the things that you couldn’t do before. My power chair has allowed me to do so much more than just to go to places. I’m able to hang out with my friends without getting tired. I’m able to go to Disneyland without being super duper dead. I made so many connections. I found love, like because of my being, being able to just be on a wheelchair. I, a friend of mine always tells me like, wow, Chris, like seeing you. How much technology has enabled you? Made me realize truly the power of technology in allowing people to do things. And that’s, I think also why I’m very fascinated, right with technology as well, because it literally allows me to. To exist and allows me to be who I am today. And I think that also, I think you had an episode actually where you were talking to somebody who talked about all the different technologies that they implemented in their home. Like people I think thinks of Alexa and Google Home as something that’s just a nice thing. For me it actually allows me to turn off and turn on the light. With ease. ’cause I, there are buttons that I physically could not reach. It’s actually a necessity for me.

And I think that’s just so wonderful and that’s why personally for me, I really wanna go deeper into technology and see what else it can do because it’s enabled so much of my life.

I’m sure there’s so much more that we can enable in other people’s life as well.

Alycia Anderson: So what’s the goal there? What is your dream like, what do you hope for?

Christopher Tjajadi: Oh man, that’s the question, isn’t it? That’s the question, Alycia. I’m still figuring out myself. I just know that seeing where my life has led me, seeing where I’m at today. For some reason, there’s this force that continuously lead me into, the Hollywood industry, right? I work at Netflix today deeply something like storytelling has some, been something that I’ve been pursuing all of my life. I just gave an example of a story. We just talked about we need to talk more about this. And that’s a story, right?

Just something so strong about stories that draws people together, that reveals truth, that reveals reality. And there’s this other piece of me that like, man, technology has enabled so much of my life made me live, but between these two axis of storytelling and technology. personally still wondering what that means and what that entails, but I do see how these two pillars continues to change and refine like our society. We see TikTok completely change, like the way the youth explores reality, right? How they get their news, what they talk about, not just TikTok, YouTube, all of these technology giants that are spreading media, which are basically, essentially spreading stories,

Alycia Anderson: Yeah.

Christopher Tjajadi: It shapes society, it shaped culture, it shaped identities, it shaped dreams, and it shaped. People’s like understanding of what is right and what is wrong. And so I think whatever that means for me, Alycia, I’m still exploring that.

But like you said, I do want to continue to pursue this world because I know for sure there are many decisions that great big decisions that are gonna be made in this world, that are gonna affect thousands and millions of lives. And I just want to pursue what that means for me, And be part of the conversation.

Alycia Anderson: I know you are not only just part of the conversation, but from a representation standpoint, like your presence. And with who you are in your physical body, in your power chair with all of your talents and your lived powerful experience, like you are that representation of possible, right?

Like you are the one that rolled into that room. And where this bright light for me of, oh my God, like I see myself, and. That’s what you are even right now for our community on this podcast, like for the disabled community that listens to this podcast and hears your story. And now that you’re working in technology, you’re working at Netflix, you’re doing all these amazing things, like that’s such a big impact that even just a few years ago wasn’t loud and proud and visible for many of us to see, and it’s such a big deal.

Honestly, I can’t wait to see what you do. It’s gonna be incredible.

Christopher Tjajadi: you have even asking me to be in this podcast is honestly, thank you so much. Itis an honor.

Alycia Anderson: Oh, it’s an honor to know you. I’ve been really excited to pick up our conversations and I was really happy that our paths have crossed because you are like the full scope of the story of overcoming so many things that are hot topics right now in

Christopher Tjajadi: Yeah,

Alycia Anderson: society, in the news. Like you are the American dream, including disability, and we don’t get to hear and see that enough,

Christopher Tjajadi: I.

Alycia Anderson: Immigrant coming in, making it happen, like being bullied, overcoming it, using technology, growing into yourself, like your story is the American journey, and that includes disability. Because disability is a massive part of our community, and you’re representing the full scope of it in such an amazing way.

You need to keep going. Netflix needs to do a documentary on you,

Christopher Tjajadi: no

Alycia Anderson: so it’s been really awesome for me to meet you and hear about your story.

Okay, so we’re gonna have to do our pushing forward moment. You’re probably gonna have to come back on ’cause we only got to four or five of my questions, but this was such a powerful conversation.

It was jam packed with advocacy, which is what we need to be doing right now. So I’m so happy that you wanted to go down that path. Excellent. Do you have a pushing forward moment that you could share with our community that would inspire them to go for it the way that you have to find their path forward, whatever that is in their own life?

Because I think that your life lesson is super impactful and empowering for them.

Christopher Tjajadi: I think now more than ever, we have all of the technology that is going to allow us to be the loudest as possible as we can than anybody can do ever in, in history, right? We have. Smartphones that are attached to the internet and we can post something and millions of people are able to see it. I think now more than ever, we have the capability and power to do incredible things. And that’s something that I’ve been thinking a lot about. the reason why I even came to this podcast and the reason why I’ve been trying to, in some way integrate myself more to social media. The canvas is.

So much bigger. It is so much bigger, more bigger than ever. And I think that everybody’s story is so unique and yet so relatable. And so if you have a story and I believe that you do, I think I believe everybody does please share it a and that’s something that I’m trying to do more of.

I want to share my story more. So should everyone else.

Alycia Anderson: Yes,

Christopher Tjajadi: believe how much that would empower so many different people that you can even imagine.

Alycia Anderson: The louder you are in sharing your own story, the more empowered you are in your own space with your disability, and you become stronger in it. And I’ve seen that in you honestly, and I’ve definitely have seen it in me. So thank you so much for coming on and doing this.

Christopher Tjajadi: Thank you so much.

Alycia Anderson: Thank you to our community for showing up again. This has been an excellent episode of advocacy on pushing forward with Alycia, and that is literally how Christopher and I roll. We will see you next time.