The Lab’s Nate Tilton on the Assembling Inclusion Podcast

Katie Nieves Licwinko:

Welcome back to the Assembling Inclusion podcast. Today, we’re going to be talking to Nate Tilton about the Disability Lab, which is on the campus of UC Berkeley. So, Nate, thank you so much for being here with us today.

Nate Tilton:

Thank you for having me here, Katie. I really appreciate it.

Katie Nieves Licwinko:

So, I know that the Disability Lab has been a part of the UC Berkeley campus since 2018, but what was the inspiration for actually creating this space?

Nate Tilton:

So, long story short, my boss and the director and founder of the UC Berkeley Disability Lab, Dr. Karen Nakamura looked around at a lot of the issues facing disabled folks. And, being an open, disabled person herself, it’s just like, we don’t have a makerspace for ourselves. Let’s make this right, and that’s, I felt, what really led her to advocate for creating a space. It’s really one of just a handful in the world. It’s a really cool space to be in, and an awesome space to work in because it’s not just a makerspace, right? We don’t just make things here. It’s also an identity makerspace, where a lot of our lab fellows really discover their own disability identity in these spaces. 

Katie Nieves Licwinko:

I love that phrase: identity makerspace. It’s more than just the physical building of items, but you’re building your own identity. That’s a really great phrase. 

Nate Tilton:

For myself, I’ve been disabled my entire life. I’m neurodivergent and I didn’t realize it until much later in life. I was undiagnosed my entire childhood through adulthood until the last couple of years. The lab really helped me explore my own disability identity. Like, yeah, I’m a disabled veteran, but I’m also more than that, right? I’m a service dog handler. I’m a power chair user. That’s another reason why in the lab we use disability pronouns, because it’s about our identity. For instance, I use identity-first language. So, I identify as a disabled person,but then also on top of that, I’m not just a disabled person. I’m a service dog handler. I’m a chair user. I’m neurodivergent. I’m a disabled veteran. So, it really helped me to really tease out what my disability identity is, and really helped me to embrace it. I felt it really helped me transition from the military, and really embrace being a disabled person, because it was really difficult for me at first. I went from being a very able-bodied, active person, running two miles a day, and just working out all the time, and I couldn’t do that anymore. I really had to come to terms with that, and I felt the lab really helped me understand to just be kinder to myself and embrace this new me, right? We’re just constantly changing, but then also learning to be flexible. I can still work out, it’s just I have to do it in a different way. So, it’s definitely been a really awesome place to be in and a really fortunate place to be for the last– I’ve been there since, like 2018, so it’s 2023– five years now? Yeah, I’ve been there for five years– it goes by quick. 

Katie Nieves Licwinko:

I was going to say that’s been awhile! What actually brought you to the lab space itself? It sounds obviously like a really incredible place where everybody can kind of learn more about themselves and their disability, but what actually made you decide to become part of the disability lab while you were at– I’m assuming undergrad, right?

Nate Tilton:

Yes, I transferred to UC Berkeley in 2018 from one of our local community colleges out here in the Bay Area. As a junior transfer, I was a lot older than a lot of my fellow undergrads, so I did a lot of research, just checking out all the stuff because UC Berkeley has just so much to offer that undergrads and graduate students and postdocs can do. So, I was like, “Alright, let me check this out.” I found this thing called URAP, which is an Undergraduate Research Apprenticeship program, which I think is a really interesting thing. Basically, long story short, as a URAP-er, you have the potential to work with faculty on their projects, or graduate students on their projects. So, I happened to look on the URAP website, and I found Dr. Nakamura on there for the Disability Lab, and they were looking for URAP people for undergraduate research apprentices. I was like, “Okay, let me check this out.” So, I applied for it, and I applied for a few more. Once you apply, then they review it, and then you interview. I interviewed with one, which was for archeology, and it was working with a graduate student, and it was a really cool project. But then I interviewed with Dr. Nakamura, and that was it. It was me and one other guy, and she was just like, “Hey, look, this is the first iteration. The lab is not officially built yet, and we’re going to be meeting in coffee shops.” And I was just like, “Wow, okay, I guess, yeah, sure! Let’s do it.” So that was it. The rest is kind of history. We worked in coffee shops. We’re working on this project called the Free Beeps Project, which we’re using microcontrollers, like Arduinos. Arduinos  are basically like these little board doohickeys that you’ll hook up all this stuff to– and it’s pretty cool. You can do a lot of different things with them, like you can make video games controllers out of them. You can make air sensor monitors out of them— infrared sensors. We happened  to make a proximity detecting system for backup, basically like for power chairs or power scooters, where they can just basically sit on the back of the power chair or power scooter and do a proximity detector. So, that way, you can tell how many feet you have behind you to back up, because most power chairs and power scooters don’t have that capability. We were just like, “Okay, let’s do that!” We call it the Free Beep Project, and it’s open source. That’s part of our crip craft line of projects– that’s crip craft copyright, Dr. Nakamura, as she likes to tell me. It’s really cool, though, you’d back up, and it just gives a proximity alert. So, it’d be like beep, beep, beep, and you could tell by the beeps– by the sound. It’s cool, though, because the technology is very flexible. So, even if you are deaf or hard of hearing, you could attach the proximity alert and do a visual detection system, and attach it to either near your wheelchair control or you could attach it next to your power scooter control system, so that way, it’s in front of you, and you can visually detect how much room you have behind you. Because, you know, sometimes it’s difficult to look behind you, or whatever it may be going on.

Katie Nieves Licwinko: 

Oh, yeah, I’m sure.

Nate Tilton:

So, that was one of the first projects we were working on. Another project we were working on at the time was the Blind Arduino project, which was an incorporation with Dr. Josh Miele, who is a really awesome blind acoustics engineer. Long story short, the goal of the project was to come up with a system because of the problem with Arduino themselves, though they’re very visually-based. So, for blind and low vision users, it can be a pain-in-the-butt to use. The project is basically how to make it accessible to blind or low vision users. That was part of the project and it’s still an ongoing project that Dr. Josh is working on right now– and also Dr. Josh is a recent recipient of the MacArthur Genius Grant award, and he’s also a fellow in our lab, and really just awesome all around pleasure to work with. He’s also an accessibility expert at, I believe, Amazon, as well. He works there, so a lot of the stuff you’ll see coming up for accessibility on Amazon– a lot of it is coming from him. Glad to see that a lot of the bigger name corporations are starting to push out accessibility.

Katie Nieves Licwinko:

That’s really awesome! Wow, and there’s a lot of really interesting projects going on within the lab space right now. I was looking on the website at the projects page and all the different types of projects that either, I guess, had been done or are currently being done, and there were a lot of really innovative ideas within there. I did see the Free Beeps on there.

Nate Tilton:

We’ve had some other projects, too, that were really cool as part of our Crip Craft projects. For instance, the Waterproof Controller Project, because, you know, a lot of power chairs are not waterproof, which I feel is a really frustrating thing. It doesn’t make a lot of sense to me. I mean, it does make sense economically for the manufacturers, but I think for the user, it’s a crappy design. I was actually at a conference in Washington D.C., and myself and Ella, who is the ADA Coordinator here at Cal, we were talking about the issues facing disabled parents. I was fortunate to meet Representative Jim Langevin. I believe he was from Rhode Island, and he has a really cool power chair. It allows him to stand up and do all this really cool stuff. One of the things I asked him, I said, “Hey, sir, you know your power chair is really cool, but I got to ask. How much is it?” He said, “Oh, maybe, you know, $100,000 or something like that.” It’s a really expensive chair. It’s really interesting, but is it waterproof? He was like, “I don’t think it is,” and I’m like, “That’s because they aren’t.” Most of our chairs are not waterproof, and so that was kind of the motivation behind that project. A lot of our projects come from the community. They come from our own experiences. We’re kind of like, “This would be really cool, right?” or “This would be really interesting to check out or to explore.” That’s what’s awesome about the lab, too. It’s not just people making stuff for disabled people, but it’s people in the community making for the community. I think that’s a really powerful part of being in the lab.

Katie Nieves Licwinko:

That’s really amazing, and that’s something I had read on your website. There was a quote about how the lab was specifically disability-centered, and that they really wanted to make sure that actual disabled users were at the heart of the project. I think that’s very clear through those examples. People are bringing their own experiences into the project, which is really important because, you’re right, it’s not much use if you don’t have the experience yourself. You don’t know what people need, and you don’t want to guess. It’s great that it’s so focused on the users themselves of these products. 

Nate Tilton: 

That’s just one of our big things because, all too often, people make stuff for the disabled community. And, unfortunately, it always just goes back to money. We understand that money makes the world go round in a lot of ways, but that’s also highly problematic at the same time. Most disabled folks are on fixed incomes. And so, it’s like, “Okay, here’s this really cool technology, really all shiny and brand new.” And it’s like, “Okay, cool, but we can’t afford that” or all the burden is basically on the disabled person to provide their own accessibility, which is another thing that’s problematic. But anyway, I digress. 

Katie Nieves Licwinko:

I know you had mentioned at the beginning that the lab wasn’t fully formed when you first started– what does it look like now? 

Nate Tilton:

The lab as a space now is pretty cool. We’ve put a lot of work into it. We have hydraulic tables, so the tables lift. For instance, our conference table. Because the lab is a multi-use space on one end, and it’s a makerspace and an identity makerspace, but there’s also a conference room. It’s also a classroom, and so it serves in all these different spaces. It’s just a flexible space in reality. And so, our conference table is hydraulic. It actually goes up. It goes down. That way, everyone can get a seat at the table, literally, and figuratively, also. Then, our equipment, for instance, also sits on hydraulic tables. If somebody needs to use our Tormach 770 CNC Lathe, if they want to make some parts, that’s fine, they can. It’s built on a hydraulic table, so if a chair user needs to use it, they just bring it down to whatever level they need to be at. A lot of times in traditional makerspaces, what they’ll do is assign a helper, basically, or assistant to help out. That’s kind of what the accommodation will be. For instance, if I’m a STEM student, and I’m an engineer, and I want to make something in this makerspace. Well, oftentimes, what they’ll do is be like, “Okay, well, here’s someone to help you do this.” But that’s the thing, I don’t really need someone’s help. It’s just the equipment’s not accessible to me, right? That’s what we’re doing. We buy this equipment, but we’re also making it accessible. For instance, we just bought a laser cutter, but the laser cutter hood is too heavy for a lot of people, including chair users. Especially because a lot depends on the height of the laser cutter plus the height of the user for the chair– they may not be able to lift it, or if they’re quadriplegic or whatever the case may be. That’s why we’re actually switching out the hood and putting a different hood in that is more accessible. That’s just kind of a quick rundown of the way that we have it built, but that’s why we’re also making our equipment that way, so that it can be accessible and used by anyone in the community. It’s just a really cool thing because I’ve been to a lot of different makerspaces, including the traditional makerspaces a lot of times, and there’s a joke we have on campus– at least at Berkeley– and we joke that there are no disabled STEM students at Cal, or at least in the engineering fields because the outside of campus is just so inaccessible. It’s on this really high hill. It’s a really bad grade. The terrain is just not very disability-friendly. Then, you go into the makerspace itself, and it’s built in a certain way that it’s just not disability friendly in a lot of ways. It’s kind of like, “Why would I want to be here?” And that’s the other thing, right? If a place is not built for you, why would you want to be there? That’s this vibe it gives off, like, “Yeah, you don’t really belong here.” Our lab is on the other side of campus, where it is flat. It has access to double accessible parking spots. It also has access to public transportation. We’re also just a couple doors down from the brand new Cal Disability Community Cultural Center, which is just right down from us– probably like two doors down. We just actually had an event with them a couple of days ago, and we had some students from a middle school come in, and they were doing a field trip at the Disability Cultural Center. Then, they had a field trip over at our lab, and we had them prototyping some pretty cool stuff. It was really cool to see these young people get really excited about disabilities and design, and it just really gives me hope for the future in a lot of ways that we can teach them about disability while they’re young, and, I think, that will make things different, hopefully, in the future, you know? 

Katie Nieves Licwinko:

Oh, yeah. I could definitely see that. The younger we could teach them about those types of things– I could see that being impactful for the future. I was going to ask about that because I was doing some snooping through the social media feeds, and I did see that you had done the event with the Disability Cultural Center and I was like, “Oh, that’s a really nice partnership.” I wasn’t sure if that was something that was new or something that had been happening, but I guess that was the first you had said? 

Nate Tilton: 

Yeah, so, just like the lab, there’s only a handful of Disability Cultural Centers throughout the US, let alone the world, and Cal’s is brand new. It was won through student advocacy, namely Alana Morales and Katie Savin, who really put in a lot of work– not just to mention them, but also quite a few other advocates. I’m happy to report that I’m on the University of California system-wide work group on disabled students, or students with disabilities. And, you know, we are really pushing change in the University of California system. One of the things that we are all agreeing upon is that all of the UC Schools need to have their own Disability Cultural Center. We keep telling them– and this has been a big point– that the Disability Cultural Center was founded on, that it’s a community, and not legislation. It’s the community. People talk about, “Well, what about your accommodations?” or “What about the disabled students programs or disabled student center?” That’s not the same. That’s all built on legislation. That’s not community. I mean, we may have community members there, and they may be allies, but that’s not the community. We need our own center, just like you have all these other spaces for identity groups. Why don’t we have one? Disability is intersectionality, just like anything else, and it was a long fought battle. Katie and Alena really fought for that for a number of years. I was on the hiring committee. I was fortunate to be on it, and we hired Ann, who is a really amazing low vision person. I believe she has her ED. in– I forget what part of education she has it in. She’s a Cal alum, and she got her ED I believe at UC Santa Barbara. And she’s just been really awesome and amazing to work with. We’ve partnered on a couple of different projects here and there and it’s the first year for the DCCC, so we’re definitely excited for it. That’s a really awesome space to be in, and, like I said, we’re just down the road, or just down the hall from each other, so it’s pretty nice. 

Katie Nieves Licwinko:

It’s nice to be in close proximity. That’s really cool because I had a list of a couple Disability Cultural Centers at universities, but it was a very small list. That’s pretty impressive that you have both the lab and the center in one space. That’s pretty incredible.

Nate Tilton:

You know, it’s frustrating. When I was applying to PhD programs, one of the things I learned because I’m a Firebaugh Scholar– when I was an undergrad– and the most important thing I think I learned from one of my mentors in the Firebaugh program was: look around at the people that are in the cohorts now. Do they look like you? Do they sound like you? Do you feel you could build a community with them there? Because grad school can be a very lonely place, and I took that to heart. That made me really look at where I was applying to and the schools I was applying to, and I would reach out to different places. For instance, I had a really big interest in the University of Washington because they have a Disability Cultural Center there. I contacted them, but no one ever got back to me. I’m like, “Is this thing even still here? Did it go in my spam?” I did some campus visits there– to the University of Washington– and it was one of the schools I was fortunate to get into, and, they were definitely on the list. It was just one of those things where I was like, “Dang, what’s up with this?” It always goes back to funding, and I think that’s the most difficult part of all. It’s just the lack of funding available. I feel, in a lot of ways, they say, “Well, you need to choose.” That was one of the things in the UC systemwide group that I’m in, we were discussing because we have people like DSP Counselors. They do people’s accommodations. So, they were talking about, you know, “What about us?” They’re worried that building these disability cultural centers will take out funding. And it’s like, why should that be the case? Why should these two organizations be posted against each other? And what Alena and Katie have been saying is that it’s community not compliance. Because compliance is the floor, but community is community. You really can’t compare those two in the same breath. There’s two different things and having that community there is priceless. That’s one of the things we want to tell the University of California system because it’s not just me and a couple of their students. These people are vice chancellors, and professors, and a lot of other people who have different intersectionality and connecting parts to disability. And, you know, we all agree on this– all of the UCs need a Disability Cultural Center. But now what we’ve been talking to, it’s like how do we get the funding? And that’s the bigger question. How do we fund it? And, I’m like, “Hey, it should not take away from the disabled students program. That’s compliance. That has nothing to do with this. This is a community group.” It’s like trying to figure out how to get the funding and navigating that, I think is difficult a lot of times because that’s what it comes down to, even with K through 12 schools, right? You have the issues with funding, and it seems to be a universal thing that always goes back to funding. Ella Callow, who I’ve advocated with several times, she’s the coordinator at UC Berkeley, and she’s also an openly disabled person. One of the things that we talked about is having a centralized account for compliance, where all the UCs, their disability student programs would just draw from one single account, or all the special education programs, which is draw from one single account through the state versus having to wait for the money to filter down from somebody else. And that could hopefully help. 

Katie Nieves Licwinko: 

It’s always the funding. It always comes back to it somehow. 

Nate Tilton:

Always.

Katie Nieves Licwinko:

And it seems like it’s never done right. 

Nate Tilton:

…and I think that’s the frustrating part. 

Katie Nieves Licwinko: 

Even in K-12, it’s hard for the funding. That’s always a challenge, but I’m really impressed with the fact that UC Berkeley has the cultural center. That’s really incredible that managed to happen. 

Nate Tilton:

Well, it’s one of those things– I feel we’ve definitely been fortunate to have the amazing student advocates here on campus such as, Alena and Katie, and now we have other ones that are stepping up. It’s just really awesome. For instance, one of our big advocates, he just started his PhD program at Vanderbilt, and I know Vanderbilt was very lucky to have him there. So, we’re just really fortunate, I feel, to have just a strong disabled community. The problem, though, is how do we bring that to all the schools, right? Because we can’t expect everyone to get into Cal and be able to afford it because there’s also a privilege in being able to come here. Because, you know, out-of-state tuition is ridiculously overpriced– my goodness. I guess it’s one of those things that’s something that the lab does, too. We’re trying to create models that other people and institutions could replicate and use it successfully. That could make their institutions a place for disabled folks also.

Katie Nieves Licwinko: 

I did wanna ask about– because I know that in addition to the projects that the Disability Lab has right now within the research, you also have on the website, different educational resources. Like I saw, there was a full lesson plan about the idea of inspiration porn within the disability community and how to avoid that. And I’m like, “Oh, this is a perfect example of a lesson plan that you could give to administrators who are trying to push that type of viewing experience on their staff and it isn’t effective.” But I really wanted to know about the decision specifically to include those resources, on the Disability Lab website itself.

Nate Tilton:

That’s actually one of the projects that have come out of the lab. That was the brainchild of Elle, who is one of our awesome disability advocates on campus. The question was: how do we bring a community center, like a Disability Community Center to middle and high schools? I feel a big part of the reason why it was constructed that way with that lesson plan to be like, “Look, it is an achievable thing that you can bring to high schools and this is how you can do it or to middle schools and this is how you can do it, and here’s kind of an example.” Because, like I said, a lot of our stuff is open source, so we want people to be able to just be like, “Hey, we can do this.” 

Katie Nieves Licwinko: 

I love that everything is so open source and accessible. There’s almost, like, not an excuse then for places that want to try it. Like it’s available, it’s here. It’s not behind a paywall. The resources are there. You should be taking advantage and looking at it.

Nate Tilton:

Exactly. We’ve been definitely having those conversations in the lab, too. What does it mean to be open source, and I guess, at the end of the day, all we’re asking is just like, “Hey, just give us a shout out. Just give us a credit for it.” We’re not asking for money. Just be like, “Oh, hey, I got the idea from the Disability Lab at Berkeley” or something like that. That’s all we’re asking, you know.

Katie Nieves Licwinko: 

Give the credit back where it’s due.

Nate Tilton:

Yeah. That’s it. I feel that’s better than the paywall in a lot of ways, because then it goes back to a community system because our goal is we want people to get what we’re doing and we want them to improve on it. We want them to change it, make it better, make it for themselves, for their space, for their community. Because what we’re making is normally specifically for this area here, but we want it to be able to be used, let’s say in somewhere in Asia or Africa. We want it to be able to be used, and that’s why we try to make it so flexible because we want people to be able to take it and to make it their own, and be able to hack it, right? One of our big things is hacking. We hack our environment, and we hack our technology, and, in this way, we’re also hacking the institution.

Katie Nieves Licwinko: 

I like that. That’s a good way to phrase it. It really does come back to that idea of one giant community, then, working together to take something that’s working and bring it into someone else’s life and somewhere else around the world. My last question for you was, the Disability Lab is doing a lot of different projects and initiatives, and there’s so much going on, but I always like to end with what are you anticipating for the future with the Disability Lab, whether it’s research or just getting involved with other organizations or advocacy work.

Nate Tilton:

The ultimate goal I feel right now is obviously, we want to make awesome stuff with the community, and we also want to be able to expand. We would really like to have a new Disability Cultural Center pops up, we want a Disability Lab to pop up with it. I go on disability Twitter– at least I did before Elon bought it– one of the things I saw was that a lot of the disabled STEM folks were talking about, “Hey, I go to a lab and they can’t even accommodate me. I’m supposed to be working on this for my dissertation, and I’m screwed.” I feel like having a space like this could actually be really helpful because then, it’s like, “here’s your personal space for your dissertation, but you have access to the Disability Lab to do your work.” It can be a really awesome space to really help communities. We had talked about expanding with some friends of ours at other University of Californias to do other things. Not just technology labs, but also like performance and stuff. Now we’re talking with Dr. Megan Moodie, who’s an awesome professor at UC Santa Cruz. She’s also opening disabled, and talked about doing a Disability Performance Lab, or something like that. Then like, we’d be working together in tandem. 

Katie Nieves Licwinko:

Oh, I love that. 

Nate Tilton:

On the advocacy front, with the systemwide committee group that I’m working with, I advocated before the UC Regents, the University of California Regents, who are pretty much the people of the University California system in tandem with the University of California Office of the President. Back in 2020, I advocated with them with a good friend of mine, Syretta Nolan, and we were advocating before them. One of the things I brought up was that we’re thirty years past the ADA, and you all are not still not really in compliance. And I was just like, how long do we really have to wait, right? At that point, I challenged them. I said, “Hey, look, I challenge you in the next ten to become not just compliant, but also be in with the spirit of the law. After that they formed a committee, the work group, which I’m a part of, and, so, I’m hoping we can definitely bring more accommodations available to undergrad and graduate students and postdocs and professional students and hopefully just make the campuses more available to disabled folks, and not just on the UC campuses, but hopefully we can service as a blueprint for higher ed and K through 12. But then again, like you said, it all goes back to the budget. 

Katie Nieves Licwinko: 

It always does. But that’s still, that’s still really incredible. 

Nate Tilton:

One of the things I’m trying to get passed right now is– a basic accommodation in undergrad and grad school is like a reduced course load, right? But then, as a disabled undergrad or grad student, you kind of get penalized when you think about it because then you have to pay more. How can you have an accommodation of a reduced course load, which allows you to have more time, but you still have to pay more money? And then, as a graduate student at Berkeley, you get money from fellowships or stipends or the department or whatever it is. This is kind of like a penalty when you think about it. This is a penalty for me taking a reduced course load, which doesn’t make any sense. So, now we’re exploring the idea of creating fellowships for disabled graduate students and undergrads, possibly. What if you have five years to complete it, maybe this would give you seven years to complete it, so that way you get like an extra two years of funding. So, we’re exploring these options. That’s kind of like the ultimate goal currently.

Katie Nieves Licwinko:

I love that. That’s a really great idea. I didn’t even think about that, but that’s true. You’re getting penalized financially even though it’s your accommodations. That’s really terrible.

Nate Tilton:

Right, that doesn’t make any sense…

Katie Nieves Licwinko:

…that makes no sense 

Nate Tilton:

I was thinking about that because a buddy of mine, he was six years in his undergrad and I was just kind of thinking about that. I was like, “Dude, you gotta pay for that?” and he was like, “Yeah.” I was like, “Dude, that’s messed up. Like, what the heck?” I know a lot of disabled graduate students who end up mastering out because they’re just like, “I couldn’t afford it anymore. I just had to master out.” I feel that’s another reason why there’s also a lot less disabled academics and professionals, because the higher ed can be so inaccessible that they’re just like, “Yeah, You’re not going to get this.”