Episode 36: Contra* Remote Access with Hector Ramirez

The podcast introductory segment is composed to evoke friction. It begins with the sound of an elevator crunching as it goes up. A robotic voice says “floor two.” Then music with a mysterious tone comes on. A series of voices define Contra. Layered voices say:

Contra is friction… Contra is texture… Contra is questions…Nuanced…Collaborative…Contra* is world-changing…Contra is innovation, messy, solidarity, interdependence…Contra is thinking about design critically. Contra is a podcast. 

Throughout, there are sounds of typing, texting and Zoom being opened. 

Then an electric guitar bass note fades into the sound of a digital call ringing and starting. The intro ends with the sound of a Facetime call ringing and then picked up. 

Hector Ramirez: 

Technology is one of our main tools. As disabled folks, we are, it's innovators, and we are of course, perhaps its greatest practitioner.

[Rhythmic pops begin, Strings ripple and play as Aimi starts to introduce the episode.]

Aimi Hamraie: 

Welcome back to the Contra Podcast. I'm your host, Aimi Hamraie. It's been a while. For those who are new, Contra* is a podcast about disability, design justice, and the life world. Our earlier seasons featured interviews with disabled designers, artists, and activists. Most recently, at the start of the COVID-19 pandemic we spoke to a number of scholars and activists about mutual aid and pandemic times. Since then, we took a break to work on a few projects. And to process the continually terrible treatment of disabled people. Back when the pandemic started. We saw the world turn to many of the types of access that disabled people had been asking for and that were subsequently denied. I'm talking about things like remote learning, work, and social life, better air filtration and masking. It was as if it wasn't actually as expensive or technologically complex as non-disabled people would have us believe. They even drew on a lot of our knowledge and experiences as disabled people to pull this off.

But just as quickly we saw all of this taken away. People were eager to get back to normal. Sometimes for ableist reasons that denied that the pandemic continues for many of the most vulnerable people, sometimes for other reasons. Even within disability communities, there have been discussions about the frictions surrounding remote access, the complexities of needing remote options to survive even though some of us experience screen fatigue or have a hard time communicating via text and video, not to mention barriers to accessing tech and internet access. In the Critical Design Lab, we use the concept of friction. To think about the ambivalences of technology, that sometimes the same things that feel sticky or unhelpful, can also be useful or world changing.

Sometimes we can even embrace friction in order to get into the messiness of access and to better work towards solidarity and interdependence. There is a lot to talk about. For the past four years, the Critical Design Lab has been working on the Remote Access Archive. We were curious to learn more about how disabled people in communities have used technology for remote participation in learning, social life, work, and other activities.

We wanted to know which technologies disabled people used, created and appropriated. Not just during the COVID-19 pandemic, but also before it. We cast a wide net and ask people for submissions of documents, objects, images, videos, and other things. We also did a lot of oral history interviews. This season of Contra* will draw on the Remote Access Archive using a few interviews to give you a sense of the conversations and frictions around this concept.

And if you're interested in learning more, you can access the archive itself on our website, criticaldesignlab.com. Our first interview is with Hector Ramirez, who is a disabled, queer, and biracial disability advocate. It was recorded by me, Aimi Hamraie, on March 20th, 2023 via Zoom. Hector and I talk about disability institutionalization, pre and post pandemic, mental health, autism, and HIV/AIDs advocacy, the intersections of queerness, race and disability. And how remote access serves as a tool for documenting disabled lives. At the beginning of our interview, I asked Hector about how they identifies in relation to disability and race.

Hector Ramirez: 

Yeah. Hi, my name is Hector Ramirez. I'm 48 years old. I am, Chiricahua Apache and Mexican. I live with my family in the unceded lands of the Tongva people, here in what they call Los Angeles in Chatsworth. My pronouns are they/them. I'm person with a disability. I have autism. I am hard of hearing. I also have mental health disability, psychiatric disability, psychiatry disability.

I am a disability rights advocate. 

Aimi Hamraie: 

The next thing we're going to do is give an image description of ourselves since we were speaking to each other on Zoom. An image description is an accessibility tool that can give someone access to what is happening on the screen, even if they're not seeing it directly.

So I am an olive skinned, Iranian trans-masculine person. I have short, dark, curly hair and blue aviator glasses. And I'm in a yellow room with a plant behind me. Would you like to do an image description? 

Hector Ramirez: 

Absolutely. And here's an interesting thing about visual descriptions. I love them because they’re a great accessibility thing for a lot of folks. But I've actually been told by many of my blind friends, uh, that they don't like visual descriptions, but I do it as an accessibility feature, for those people that really appreciate it, like myself. So, just in consideration for those people that don't find them useful. So I am in actually sitting in my bedroom, but I'm using a Zoom background and it has a picture of Los Angeles County skyline, and we recently had snow. So the mountains in the back of snow, and you can see the contrast of the downtown city. I'm wearing a an orange shirt because orange is my favorite color. And I have, uh, long hair, which I pulled back in a ponytail and, clean shaven. I think I have a little goatee that's been growing for the past, month and a half.

I am a very good looking, sexy, smiling guy all the time. 

Aimi Hamraie: 

What are the words that you would use to describe your race and gender? 

Hector Ramirez: 

I'm two spirits, and so I am part of the non-binary community. I'm both male and female and neither. And so I previously had used gay to identify my sexual orientation, but it's, I, I really, connected more with my community. So I really use two spirits both for gender and, uh, sexual expression orientation. I, I have using, they/them pronouns for quite a while. It’s part of my community and my family expression. I am a very intersectional background. So I was born in Mexico. My family is both Mexican and Native American, both in the Apache community, the United States, and the Apache community or Indigenous community in Mexico.

So we're bicultural in a way. But my family, and I live here in Los Angeles County and to the tradition of relocation, so we have a large community here in Los Angeles County. For me, that really allows me to both have a large Native community 'cause we have the large Native American, Alaska native community in the whole United States, here in Los Angeles County.

And we have a significant representation of tribal communities and with that also allows me to also have my disability identity. I was diagnosed with, when I was four. I come from pre ADA law. And so. For me, that has also been a journey. I was originally was originally diagnosed with child schizophrenia, which was the original autism diagnosis, and my mom was the typical, refrigerator mom.

Those diagnosis were not just for you, they were for your family, your community. As a Native person, as a single mother, you know, I ended up being removed from a family because of that. That was law. And, uh, I didn't come back to my family until later on I got to go to high school, right where, uh, special education integration was happening.

I been very active in the disability rights community and the LGBTQIS2 community and Native American community immigrant community. Definitely the Hispanic and Latinx community because those are part of where I live, but also what I look like or what others see.

[Long, low chords]

Aimi Hamraie: 

I am curious, when people refer to you, how do you want them to describe your disability or your relationship to disability? So for example, do you use terms like person with a disability or disabled person or autistic person or person with autism? What is your usage? 

Hector Ramirez: 

Oh yeah, it, it's been progressive.

Right now I really am centered, as a disabled person. It's more of my social, cultural. But I tend to use person with a disability primarily because it emphasizes - when I use it, I use it in spaces where I'm trying to really take up space as a disabled person, but also to really point out and assert disability rights under state and federal laws and where we are a protected group of people as people with disabilities.

And so I use it, primarily that term in that context. But in general, I'm a disabled person. I'm an autistic person. I'm a hard of hearing person. I'm, I'm a person with lived experience. I'm a person with a psychiatric disability. I'm a bipolar individual. So it's really more as a disabled person, feels more like in solidarity with everybody else. 

Aimi Hamraie: 

Like, because you mentioned that a disabled person is a social and cultural identity, do you consider yourself to be part of disability community or disability culture? 

Hector Ramirez: 

Well, yeah, I don't think you, you really can't, especially if you're from an equity seeking population or like a community of color or a queer person, because it's, one of the things that kinda intertwined with disability culture is just, you know, a continual fight for survival.

So, you know, I grew up around people with disabilities. I went to school with disabilities, I lived on the street with people with disabilities. I've been locked up and institutionalized. It’s family, it’s community. People with disabilities have a shared culture.

[long, low strings sound repeatedly]

Aimi Hamraie: 

So now we'll shift gears to talking about remote access. First, we're gonna talk about the period before the COVID-19 pandemic, which is a pretty long period of time, but can you think of times in your whole life? When you participated in things remotely as a form of disability access? 

Hector Ramirez: 

Yeah, so one of the things that I do, is I do policy work at the city and county level. Then I was, I also do it at the state and national level. I sit on the board of directors for the National Disability Right Network out of Washington, DC. We are a national membership organization that is comprised of protection advocacy agencies from every single US state and territory. And so they all do disability rights work. And so before the pandemic, I would be doing a lot of traveling. Both downtown - which was hard because the traveling was sometimes just long, just getting there for like half an hour meeting.

So I did a lot of that. Oftentimes I did it because there weren't accommodations for me to do remotely. Everything that I could do was typically over the phone, and there were times when I would just do it over the phone and I would utilize some of my accessibility features that I had back then. They have improved since the pandemic, but before, like the only option that I would have was to use like a TTY service. Or an ASL service to be able to join by phone, which was very challenging and very expensive, you know, even to join like county board meetings or mental health meetings. And so I would have to do traveling, and that was before the pandemic. But accessibility, I did have it 'cause I, I come from academia.

I have a background in communication, psychology, even chemistry. I had used it in classes before, Zoom was there before, and I loved it 'cause it had that option of having better sound first of all. It was able to add other elements 'cause I could have the, the CART or the language interpreter joined remotely as well and they could add that additional thing.

And that was happening in academia before. And so I had a familiarity with it, which was really good because when the pandemic hit, I had just been appointed to our state governor’s behavioral task force. We were gonna be redoing Medicare Medi-Cal for systems. And I had the opportunity to be appointed as a stakeholder representative 'cause I was also on the board of Directors for Disability Rights, California.

I do a lot of disability rights advocacy work. So I got appointed to this. Now I remember I flew to Sacramento on the day that, uh, we had confirmation on our first community transmission case for the whole country. And we had been following it along thinking of possible scenarios and we already knew how it was gonna hit our disability community - we already knew.

This is not our first pandemic. We've had the AIDS pandemic, H1N1. We, we've had multiple pandemics, especially like if you're part of population disabled, Native American, queer. We've been dealing with the AIDS epidemic as Native people. We've been dealing with continuous epidemics and so we already knew patterns of lack of access.

I remember, I think that was my last in-person meeting, being in Sacramento, and I flew back to Los Angeles and I mean, I used to fly at least twice a week and that's, I was like a road warrior. I was like flying twice a week and on the 16th of March everything stopped. And we had already been pushing for certain things to be able to be done remotely.

I was working literally every day around issues of access, you know, disability rights. We were inundated with work. The first thing right away, with was first one was like the, the space. And I was also volunteering. Like on the weekends I used to volunteer a food pantry and it was like a once a week thing. And the thing that I knew was food was gonna be an issue for folks, particularly people with disabilities. I started working at the state level working on food pantry issues. We realized that every single issue, impacting every little thing around people with disabilities, was gonna be impacted. And none of it was in a good way.

I knew just how difficult it was gonna be, but I was stuck at home and that was all part. As a person with disability, with autism, as an autistic person, I had worked really hard. I like my socialization skills. I would force myself to go out and just be around people and now I didn't have people around me.

And for a little bit it felt good, but then it felt like I was back in an institution. And that was the weirdest thing because…it felt like the community had been taken away. You can't go there. You can't go there. You have to stay here. And even though I knew it was for safety and I would tell myself, it really felt almost like I was back in an institution.

And that was a really difficult thing. And I remember that's when I started volunteering at my food pantry more. I started connecting with other disability activists across my county. We feeling the same way, and they realized that they had forgot to know about us. And so we were making YouTube and Facebook groups on how to make, you know, hand sanitizers. I learned how to make hand sanitizers and teaching people to do that masks, how to make masks. We started with socks and because we didn't have access to PPE. And you know, those sorts of things and trying to do groups. And so remote access became a tool of survival, and those of us that had access to it, because we did have a additional divide for a lot of folks, the space for privacy or do that.

So those of us that were really doing it, we just started supporting each other. Twitter was how we found out how things, where things were happening. When I would go to my meetings I was able to really provide a lot of that information. But having had experience using like Zoom before or Skype, I knew how to better manage this.

And so when I was having these meetings with other people, not only was I better able to communicate the needs because I wasn't struggling like other folks, I could also really use it more of a tool. To really advocate. And so I noticed that a lot of other folks, the civil folks were doing, Alice Wong, you know, and I really, I just echoed and we followed each other and because we started to see family and friends dying of COVID right away, you know, my family earlier on, we lost our aunt right at the beginning in, in April.

We saw, uh, the isolation in the hospitals, the lack of oversight of disability rights, both to be able to go to meetings and complain and say this is happening to us was just astonishing. We couldn't really, um, look out for ourselves in, in hospitals and so it, it, it, it really not only became opportunity to like what we're doing. But also to really point out how we were being left behind when things like the vaccine came out or was being developed. I actually volunteered to be one of the test subjects, one of the vaccines earlier on, because I wanted to make sure that when it came out that people with disabilities wouldn't be left out. Because that always happens, you know. I wanted to make sure that autistic people wouldn't, because that's always vaccines cause autism. And I was like, no. 

And so it, it went from travel every day to. Being in front of the computer . all day from meeting to meeting, reading, reading, writing, writing, communicating, and I did it at home around my family while we were happy, while we were sad, but we were sick. I had a brother who was younger than I was. He was also Two Spirits and he was living with HIV/AIDs and he knew he wasn’t going to make it. He knew the vaccine wasn’t going to come out in time.

He lived independently. He had been homeless for like over a decade and he had just managed to be able to get off the streets and live the way he wanted to, and…but he couldn't go out to buy groceries. The nurse couldn't come in to see him. He started developing opportunistic illnesses that we hadn't seen since the eighties, and we knew what that meant. Our whole family had lived it. 

So he came and he stayed with us, and he would do advocacy with me when he was sick, and he did it literally in this room where I'm at, because I'm actually in my room. And he did it until the day he died from COVID, while using Zoom. But I think that was the thing that allowed us to really perhaps fight for things because we were able to really get our governor to change policy. Because in California we were pushed back in the priority list from January until March.

Even though we're part of the COVID task force and advising. They didn't listen to our recommendations, and that's one of the things that we have been able to really hold our leaders accountable because these meetings are recorded. I think that's perhaps one of the other things about a lot of the meeting that we've been able to do remotely is that we have testimony, pleas, recommendations. From people that use this as an advocacy tool until the day they died. We have this pandemic documented in ways that we weren't really aware was gonna happen. And I think that's one of the ways in which the disability experience has really been documented like never before because of COVID. 

Aimi Hamarie: 

First, I wanna say I'm so sorry for all of your losses and your family, and I'm also just so sorry for our whole disability community and the ways that people have been excluded and left behind in this whole process.

It's so painful and awful, and I'm curious to hear you talk more about that documentation you were just talking about. So who is doing that, documenting and like where is it? 

Hector Ramirez: 

Localities, so localities that have been utilising Microsoft Teams, Skype, many of them have kept the actual copies of it, either because of Brown Act State or city code.

So I know here in California we actually, I started to keep them all the, the actual copies of them with the video. Before that was done, we have audio recordings of them as well because they were kept for accessibility purposes, but also for note keeping purposes to assist. And then we also have for a lot of meetings, CART transcripts, which are like full text of the meetings. And for some, you have all of them. And that has really been the push, not necessarily to keep a record, but for accessibility purposes, which has been one of the biggest fights that has really leveraged a lot of never before seen progress as far accessibility. Which is one of the things, uh, I'm currently working, both at the county and state level to be able to ensure that accessibility is maintained as, the emergency right now resets and people go back to meetings, I think. One of the things that people have both realized is the value, definitely how difficult sometimes it can be to join certain meetings. Some platforms are more accessible than others. Some meetings are easier to join, definitely than others. But for government stakeholder purposes, like there's some funding streams that require agencies to have stakeholder participation.

And so Medicare, Medi-Cal, affordable Healthcare Act, SAMHSA, those are some of the like big funding sources that require that people engage with the departments and definitely engage with their city officials. And so that, that documentation is there. And I use it a lot because I - I use it as examples of how public meetings that are open to the public had a significant amount of disability access needs that was never really met. And I used to be a commissioner here in Los Angeles County for the Department of Mental Health, which is the largest public mental health system in the world. And I could only do it for a couple of months. And I stopped because as a hard of hearing person, Los Angeles County back in 2015, I couldn't get captions. I couldn't get CART as a commissioner, and I couldn't hear what people were telling me. And as a person with a disability, I tell you in the biggest county, I couldn't get that, but there was no documentation oftentimes to prove it. Now, when we have our public meetings done remotely, which the ADA and you know, disability meeting guidelines were never rescinded during the pandemic.

In fact, in like, in my setting, many others, it was actually mentioned that during the pandemic, those requirements were not only maintained, but they needed to be monitored. California was one of those. So you know when a meeting didn't have captions, when a meeting didn't have sign language interpreter.

Linguistic accessibility has become a new thing as well, a priority for us. Ensuring that non Spanish speaking folks have access to that. Plain language has been one of the other things that we have been requesting. Oftentimes in these meetings, we get materials that is very complex to read and because this needs to be accessible to the general public. Definitely highlighting the need to access, you know, traditional platforms, but also to equipment and broadband as an accessibility need for folks, because we know that more people have been able to utilize remote platforms for medical services than before. Is more cost effective for a lot of communities.

For some individuals, this has facilitated a variety of other services, but in the government sector, this has really facilitated and increased the public engagement sectors that are elected official and government officials need in order to make those necessary decisions. Especially like during the pandemic when decisions needed to be made fast and you needed to have that input from the community.

This was like a really good thing. People being able to join remotely by phone or by Zoom and being able to actually listen, or participate, and our elected officials to hear from folks like number before. Like here in California, we're tackling homelessness as a state of emergency crisis declaration because you know, I think folks finally, listened.

There's listening and hearing. I think accessibility and platforms allows our elected officials and government officials, not only to listen, but to hear us better. Since the pandemic, I've been able to travel less and join more space than ever before. I mean, I'm part of a lot of different task force, and I think part of it was for my mental health, but I think it was also out of survival.

I think more than anything is because I could do it. I was able to do it, I had access. And I fought like hell for my captions. I fought like hell for ASL, in every space that I would go in. And I was surprised in how many spaces I would go in that were not accessible and they didn't think that they were accessible. And I hated the fact that as a disabled person, I had to go into this public or government spaces all the time, and fight for that when that was not the purpose of me being there. That was like the worst thing from my mental health and my physical health, but it was just everywhere that I was going.

People didn't understand that. 

Aimi Hamraie: 

So I want to just summarize a few of the things that you said that were interesting and I've never heard anyone say before. One is because accessibility was built into these meetings, and so there were recordings and transcripts, it better enabled people like you, disability activists and advocates to actually advocate with local and state governments and possibly other entities because you had these conversations documented. 

Hector Ramirez: 

That's quite true. One of the things is like in public meetings, sometimes people would say things, they're like, did I hear you say that? And they're like, oh no, I didn't say that. Like I heard you say this in your testimony. And I really concerned 'cause he contradicts something. And you know, they would always, but with this meetings, not only was it more clear, but it's like, wait a minute, I just looked at the recording and you said something else. Or we saw a lot of like blatant examples of discrimination in both statements, and practices.

And there were other people in the meetings that could see it. So it wasn't over exaggeration. And I think more than anything other people, when they were coming into these meetings, they learned about accessibility or making sure that spaces were accessible. And really considering that, because a lot of folks, they're just coming from home. And I think a lot of people don't realize that we were also coming from home and many of our homes were in crisis. Many of our homes were in the streets, and we were literally coming where we were. Institutions. We had people joining in from state hospitals. We had people literally calling houseless on the streets, on rainy days for our meetings and in their cars. And it allowed to not only see people, but disabled people where they were. But also it allowed the general community to see us in a way that perhaps others had never seen.

They saw our ability to not only engage. But to really contribute and be a significant asset like we've always said, than ever before. Because we were right there in their faces. We're so close. And it has helped a lot of folks with disabilities get hired like never before. This past two years, I've seen like a lot of opportunities for folks that I've never really seen, and I think this has helped to highlight that, but I think it has also helped to highlight the inequities we’re facing.

Aimi Hamraie: 

That's so interesting to hear about. Something that you said that I've heard other people talk about is that the ability to participate remotely meant for you and other people that you could even do all of these things. Go to these meetings, et cetera, because you didn't have that transit time and yeah…

Hector Ramirez: 

Especially when you’re doing state or federal level advocacy, the is significant to do it if it's, if an agency doesn't sponsor or reimburse it, it's significant. Before the pandemic, like Hill Central County - my peers and I like, we would collect our aluminum and we would collectively save it so we could pay for our bus pass to go to meetings. Or we would like share lunches with each other because the travel time between here, there could take three hours and there was no water or food there, or a bathroom on the way.

It made it physically, mentally, really inaccessible for disabled folks to really participate in, in the spaces where decisions are being made about our lives. And hold on, but nothing about us means that we need to be, wherever those conversations are happening and this platforms allowed that to, to really happen.

Like I was able to be in meetings with my governor, with my mayor, with my board of supervisors. So I was able to like jump in and on task force with state, one meeting after another. And it’s a lot of, a lot of accessibility and it was, but it was also very exhausting. You didn't know sometimes what hat you were wearing, or you would go from one beating to the other one and you would be in one mood because you're always fighting for accessibility.You're starting another one and you like ahhh. You can't even take a break. So it had it benefits. It also had those particular kind of things. 

Aimi Hamraie: 

It's helpful to hear about these really tangible resources that were required to do these things that then having remote access made possible to do with a different set of resources and technologies.

[Long, low chords]

So one more thing that I wanna talk about that you said that was really interesting to me and I was kind of piecing it together from the life history that you shared earlier in our interview. And then something you said a little later was that it sounds like as a child or as a young person, you were institutionalized.

And then when the pandemic started and this isolation came back, you felt like that kind of institutionalization and social isolation again. Is there anything that you wanna share? About remote access from the time of your life when you were institutionalized? 

Hector Ramirez: 

Being, being institutionalized earlier on really meant a complete shutdown. I always used to dream about what life was outside. I had, I would see some TV or magazines, and I thought that - I had no idea what that was like. I think I disassociate myself and just think that I was dreaming that I wasn't there, and I think that came back a lot. And I still struggle with it, that I feel that I'm still back there and this is all just a dream. Because it felt that isolating, even though I wasn't alone. it was just such a major shift in routines. And my life was all about routines. It still is. Routines that feel good, routines that I had to have. Routines that I forced myself to do, routines that I really enjoyed, and all of that disappeared and the last time that I felt that was when I was institutionalized back then.

And so that perhaps for me, is one of the reasons that I try to do whenever I can, anything in person, which I still struggle. 

Aimi Hamraie: 

So when you were institutionalized, were there forms of remote access? 

Hector Ramirez: 

Oh, no, no, no. People visited you when they could. You would go out on outings every once in a while, local area. When I was in the hospital, not only was that this connection there from like society, but something else. When my peers would get hurt or get sick they would disappear. And that was it. Little by little they were all disappearing. And that's what COVID felt like. And you knew it was a matter of time before it was a person that would sleep in the bunk next to you. It happened to a lot, and there was nobody there. That's what COVID felt like as people started, you know, dying. Disabled people. And maybe that’s why joining remotely, perhaps as many meetings as I could, felt like an emergency. I think this is where my autism kicked in 'cause I was able to really create a lot of routines and really manage. Or think that I could manage a lot of these meetings. 

In a way, it felt like I was back at school and, and I learned so much about COVID. I learned so much about government. I also learn a lot about loss every day. I literally have whiteboard around me where I take notes. I have notesbooks and notebooks and you know, I stop printing 'cause it's just not good to print stuff. But because I was doing a report looking data and, and stuff like that. It has, it has a purpose to be able to do this remotely and to be able to engage in this type of activity.

And as a disabled person who's autistic, I think for me this was a really good way to show my skills. But only when it was accessible. I, because I cannot tell you just how hard it was to go to a meeting and not be able to hear. And have folks start. They were to go, oh, we'll just start without him. And you know, we, oh no, you're not gonna do not start it without me. How dare you? And having to assert your humanity over and over is exhausting. You know? Now I'm glad you know when you can request the captions. Now you can choose languages. Before you're like, oh, well Hector, you, you're, you should know how to do this. Like, I'm not getting paid for. I've spent so many hours teaching people how to make meetings accessible.

Aimi Hamraie: 

Yeah.

Hector Ramirez: 

Yeah. I have spent so much money, like, I wanna get paid. Well, actually no, 'cause I didn't like doing that, you know? 

Aimi Hamraie: 

Yeah, it sounds like even though those meetings on Zoom provided some kinds of access, there were other kinds of access that it was other people's job to provide and you really had to do a lot of advocacy for in order to get in those spaces. Like captions.

Hector Ramirez: 

You know, it's, it was weird because in some of those meetings. I played, like I had in some of the meetings, I had like key roles where I was like leading them. And when the person leading or, you in charge them cannot even participate. It was like people like, okay. Or when they couldn't see them. 

That was interesting thing. People got to experience what it's like not to have access. Oh, did I freeze or wait, how do I turn the volume on? And it was like, interesting. And you could see the frustrations. Oh, I've been trying to raise my hand all morning. Like, tell me about it. So that has been kind of like the leveling of the playing field, sort of.

We sort of had a taste of what it, what it's like to have a level playing field. Especially when we were joining remotely, when we were on our own and we had no technical assistant to help us, and everybody's in their own room trying to figure it out. This platform has really established a level playing field for many folks.

But it had also highlighted how uneven it is for even other folks living in poverty, other people with disabilities. But technology is one of our main tools. As disabled folks, we are, it is innovators and we are of course, it’s great as practitioner. 

Aimi Hamraie:

Yeah, that's I think so too.

[Long, low chords]

I'm curious if you have encountered anything in terms of remote access during the pandemic that was surprising to you, that you weren't expecting based on your experiences. 

Hector Ramirez:

You know, uh, I wasn't expecting Microsoft Teams to be so inaccessible. It's such a utilized tool in the business setting. And first of all, it was highlighting just, and how many spaces we were not in because we were always able to see and how many people didn't know about - one time, uh, I came into a meeting and it had automatic captions. The window for the ASL interpreter was there. I came in one day and somebody had like a disability etiquette for the meeting. And this wasn't a disability meeting. And I was like, what, who's the disabled person here? And I was the only one there. And I was like, wait a minute, how'd you do that?

And they go, oh, we are just ensuring that, all of our meetings are inclusive, diverse, equitable and accessible. It was like 2023. 

And so 2023 really has been the year when I'm really coming into the spaces and they are accessible, you know, not just like captions in other languages or they have like the, the universe, the translator for multiple translators. That was a big one. CART in more than one language. That was a big one. And so those are some of the things that I'm continuously being impressed.

I saw a presentation of a remote meeting done with a virtual headset. That was really interesting too. I'm glad that people are really seeing the benefits of this. And I know they want a break. Everybody wants a break from anything, and that means meetings. But you know, I don't know why people think the pandemic is over.

And so I think all us, many of us continue do this and that’s why its so important have this continued access for stakeholders from a legal government point of view, but also from a human point of view. Because a lot of folks, when they join in those meetings and they're making those comments or their public statements, that is the last thing that remains of them. Especially people with disabilities.

They want somebody to hear them. They want somebody to know what's gonna happen. They want somebody to know that they were alive. They were asking for help. There's just high poetry with the fact that a lot of these meetings are recorded. They're perhaps like some of our most big fights, but for a lot of folks, that's the last thing we have of them.

When state hospitals were closing and people were leaving, there was a lot of things that was left behind in said hospitals. There was a woman, I can’t remember her last name, she just died. But she started going to some of the state hospitals and she would find abandoned luggage with some of the belongings to some of the folks. And that was like last things.

And I think this is very similar to that, in some aspect because it's still living, you know, this is still more active. When I realized that there's all these like recorded meetings and all these different depositories, I, I can only imagine what's in them. 

Aimi Hamraie: 

That's so true. What an apt comparison too, to those suitcases, like the collections of people's belongings from state hospitals. You've given me a lot to think about too, in terms of intersections with institutionalization here. So thank you so much for that. 

Hector: Ramirez:

It's also really good to show representation, because not only could you see disability, but we were able to really highlight intersectional. Cultural intersection and disability community, because sometimes disability is so white and that the people in some of these meetings sometimes don't represent the diversity or the equity that we have.

And so I think that has also been a significant benefit for the collective work that we all do in the disability justice community, particularly for our trans community and our non-binary community and our new diversity community. I was in a meeting, when was it? I think it was two months ago, and I was like with like 50 autistic people from all over the world. And it was really interesting 'cause we were all having like policy conversations and everybody's stimming or doing their things. And it was kind interesting because I had my little Brady Bunch screen. It gave everybody this, like, we've been doing those things and I was like, oh.

But it's like we had like so much diverse representation, like I have never really… Wow. And so I think that has been the other thing. It has allowed us opportunity to collaborate. I have collaborated like I've never before. It's been a lot of work, but like I said, it's been survival. It's been survival. I just thought of a, I don't know if it's correct, but I feel like I've been working the corner and that's not a bad thing.

Aimi Hamraie: 

What do you mean by that? 

Hector Ramirez: 

Because it was so personal. Really, this type of advocacy, since the pandemic has been a very personal type of advocacy, like I've never had. It’s in my home. It's literally in my home. At times the meetings were like everything was happening, and so it felt so personal, like I did whatever I had to even exposing myself.

Aimi Hamraie: 

Yeah, it's like an incredibly vulnerable thing, but it's helping you survive.

[Strong chords, a twanging descending note]

Do you have any thoughts about where you would want remote access to go from here in the future, whether for community or advocacy or anything else? 

Hector Ramirez: 

The accessibility element is a big one. The continuation of that, and you have the documented, you're going in direction. It really helps us to really fortify that argument for our community.

I hope it's not a long-term need that we have to keep fighting for that, but it probably usually is. Iut then also I feel like I have a chip on my shoulder. You know, I'm mad at how many people are dying, how many people have left behind. Something to help us help document and memorialize what has happened to us.

We were made expandable and I literally saw more than a quarter of my community die. And that's for my whole disability community. The disability experience is always about reminding folks to keep going, but that doesn't mean they need to forget, and I think that's what you have the potential to do.

[Rhythmic pops. Strings ripple and play as Aimi speaks]

Aimi Hamraie: 

You've been listening to Contra*, a podcast about disability design, justice, and the life world. Contra is a production of the Critical Design Lab. This season's episodes draw on our recent project, the Remote Access Archive, created by a team of disabled researchers collaborating remotely. Learn about our projects, including the remote access archive at www.criticaldesignlab.com. If you enjoyed this episode, please subscribe on Spotify rate and leave a review. 

This season of Contra is edited by Ilana Nevins. Kelsie Acton and Aimi Hamraie developed the episodes. 

The Contra Podcast is licensed under a Creative Commons attribution, non-commercial share, like International 3.0 license.That means you can remix, repost, or recycle any of the content as long as you cite the original source, aren't making money, you don't change the credits and you share it under the same license.