PT-DisabilityNEW59
Jessica Ticktin (HOST): [00:00:00] On Peace Talks Radio, what would a world designed for everyone look like?
Lolo Spencer: There is a way to navigate a disabled life that isn't rooted in trauma or turmoil or negative energy feelings. There can be joy. There can be laughter. There can
Emily Ladau: be style. Disability cannot and should not preclude someone from living whatever a full life looks like for them.
Emily Ladau: Inaccessible environments are what preclude people from being able to fully participate in their own lives, as well as discriminatory attitudes. But disability itself is not the problem.
Jessica Ticktin (HOST): Rethinking disability, inclusion, and belonging. That's coming up today on Peace Talks Radio.
Jessica Ticktin (HOST): This is Peace Talks Radio, the radio series and podcast on peacemaking and nonviolent [00:01:00] conflict resolution. I'm Jessica Ticktin, today with Emily Cohen. More than one in four adults in the United States has a disability. Some advocates point out that disability is something many of us will experience eventually.
Jessica Ticktin (HOST): In that sense, we are all temporarily abled. July is Disability Pride Month, a time to celebrate disability identity, advocate for equality, challenge ableism, and push for full inclusion in everyday life. The month commemorates the anniversary of the Americans with Disabilities Act, signed into law in July 1990.
Jessica Ticktin (HOST): To mark the occasion, Emily Cohen speaks with three guests working to amplify the voices and experiences of people with disabilities and advocate for a better world for everyone. We first hear from disability rights advocate Emily Ladau, host of The Accessible Stall podcast and author of Demystifying Disability: What to Know, What to Say, and How to be an Ally.
Jessica Ticktin (HOST): Then we'll hear from actress, speaker, and disability advocate Lolo Spencer about representation, identity, and challenging [00:02:00] stereotypes about life with a disability. In part two, Emily speaks with disability justice leader Mia Ives-Rublee of American Progress. Here's Emily's interview
Emily Ladau: All of the work that I do is focused on meeting people where they are on their journey of learning about disability, recognizing that for many people, disability may feel confusing or scary or unapproachable.
Emily Ladau: So I want to, as the title of my book says, demystify disability and make it feel much more approachable to people because it's not at all a niche issue. One in four people in the US have some type of disability, and around the globe, more than a billion people have some type of disability. So, um, this is very much statistically relevant to everyone, but also just relevant to people because disability is a [00:03:00] natural part of the human experience.
Emily Ladau: So I take the stories, the ideas, the concepts surrounding disability and try to make them accessible.
Emily Cohen: You write that disability is the one identity that anyone can acquire at any time, that we're all really just temporarily able-bodied. How does that idea change the way people should think about disability?
Emily Ladau: I think that people don't necessarily recognize the idea that being non-disabled is a temporary state of being for everybody. And anyone, as you said, can become disabled, whether it's because of an illness or an accident, or should you be lucky enough to live a long life, you will most likely age into disability.
Emily Ladau: And we think of this as something that is incredibly frightening, but it's not. It's really just another way of being. And I am very much of the belief that we need to [00:04:00] take disability away from this negative framework that we've been socialized to look at it through, and instead just think about it as another way that our mind or our body might function and move throughout the world.
Emily Ladau: So It's true that anyone can become disabled, but we often ignore that fact until it becomes our reality. I'm of the belief that we need to recognize that because anybody can become disabled at any time, that's all the more reason to make the world more accessible so that if your mind or body does change in a way that you need that accessibility more than you previously did, it's already there and ready and available to you.
Emily Cohen: For folks that are new to this concept or unsure about how to talk about disability, what are one or two things that you want them to understand?
Emily Ladau: I think first and foremost, there are [00:05:00] narratives that are pushed about disability where if we think about it at all, we're taught to think about it in terms of either hopelessness or helplessness.
Emily Ladau: And so hopelessness being that disability is tragic, that people are the victims of disability, that it's sad or that we should pity someone. And then of course there's helplessness, this idea that people with disabilities are not whole and worthy human beings who can live full lives. And I want to debunk those immediately because disability cannot and should not preclude someone from living whatever a full life looks like for them.
Emily Ladau: Very often, inaccessible environments are what preclude people from being able to fully participate in their own lives, um, as well as discriminatory attitudes. But disability itself is not the problem. And [00:06:00] in terms of this idea that people with disabilities should be pitied, I also want to push back against that because we've created this narrative around disability that it's so very sad, um, to have a disability because many people who don't have disabilities are fearful of what their life would be like if disability were to happen to them.
Emily Ladau: And so they push this negativity onto the disability community rather than understanding that- Disability is not something that we should feel this deep, unsettled fear of. Um, and it's not something that makes me, as a disabled woman, someone who should be pitied. I'm not the victim of my disability. My disability is very much just another part of me.
Emily Ladau: I also want to push back against this narrative of [00:07:00] disabled people as being inspirational simply for living our lives. There's so often this misconception that simply because I've gotten out of bed in the morning, that that means I am an inspiration, and I like to joke that the only reason I'm really inspirational for getting out of bed in the morning is because I'm not a morning person.
Emily Ladau: But other than that, there is nothing inspirational about simply existing as a disabled person. We are navigating the world in our own ways, just like everybody else.
Emily Cohen: Was there a moment that made you want to decide to become an advocate?
Emily Ladau: I think that the very nature of being disabled is that we are sometimes forced to become advocates for ourselves, um, whether that's a direction we choose for ourselves or not, simply because we live in a world that's still not welcoming of and accepting of the disability [00:08:00] community.
Emily Ladau: So in many ways, the choice was made for me, but, um, more than that, I think that it took a while for me to come into my own and honor my identity as a disabled person. There was a time where the biggest compliment that you could pay me was to say, "I don't think of you as having a disability." And it wasn't until I got older that I started to realize if people were saying that, what they were really saying is that they had to overlook an entire part of my lived experience in order to see me as a human being, and I didn't want that anymore.
Emily Ladau: Um, I'm lucky that in many ways it came early for me, because my mom has a disability and her younger brother, my uncle, also has a disability, so it was always something that was a part of my life, um, the same disability that I have. [00:09:00] And when I was 10 years old, I got to appear on multiple episodes of Sesame Street to educate kids about my life with a physical disability.
Emily Ladau: So those were some, you know, early moments where I connected with disability in a way that pointed me towards being an advocate. Um, but it wasn't really until I started to fully become comfortable with myself as a disabled woman that I started to identify as an advocate. So it wasn't a singular moment, but you know, a, a series of moments of growth over time.
Emily Cohen: What are some of the biggest gaps in accessibility or rights today that people might not realize? Um, some of the things you mentioned in your book are airlines, voting, enforcement of the ADA. I'm wondering if you can expand on some of that.
Emily Ladau: I often remind people that you can create a policy, but [00:10:00] you can't legislate an attitude. So there are indeed policies in place to protect the rights of the disability community. There's legislation in place to protect travelers with disabilities who are traveling on airplanes. There's legislation meant to protect voting access and voting rights for the disability community.
Emily Ladau: There's the Americans with Disabilities Act, of course, which is meant to ensure that people with disabilities have equal opportunities, um, in many areas of public life. There's the Individuals with Disabilities Education Act, which is meant to ensure that disabled people have full and equal access to education like non-disabled people do.
Emily Ladau: And all of this legislation is essential, but what matters most is the attitudes of people who are [00:11:00] responsible for enacting and upholding this legislation. So the gaps really exist in the need to continue shifting attitudes to keep up with what the legislation says. Disabled people should by now have full and equal rights and access to anywhere and everywhere that a non-disabled person would, but that is not the case yet, and that is largely because hearts and minds have not yet shifted to match the legal language.
Emily Cohen: Hmm. I think one of the best examples of you-- that you gave was around the curb cut effect, the idea that accessibility really helps everyone. Are there other examples that you can think of, of how that might show up in everyday life that people could relate to?
Emily Ladau: The curb cut effect is my favorite example of the benefits of accessibility [00:12:00] because if you have a curb, not everybody can get up and down it.
Emily Ladau: But if you have a curb cut, it works for everyone, whether you are using a mobility device or you're a caregiver pushing a stroller, or you're a kid using a skateboard, or somebody rolling a cart. Everybody can use curb cuts. And I often try to extend that further and remind people that you can create curb cuts in pretty much any area of life that will vastly improve things for everybody.
Emily Ladau: And some really key examples of that are, first of all, providing captions. You may think that you don't need to caption or transcribe material that you put out into the world, but even if someone is not deaf or hard of hearing, if they don't have a sensory processing disorder, chances are you'll still benefit from captions because you might [00:13:00] be in a loud place, but you want to hear what you're watching, and you can't hear it, so you can read the captions instead.
Emily Ladau: Or you might be in a place where you need to keep the volume off on your phone. You might be watching a television show and not catch everything that's going on. So captions are, in many ways, a curb cut that helps everyone. Another one that I often point to is working from home, and I say that this is, in many ways, a digital curb cut for people.
Emily Ladau: And the COVID-19 pandemic really brought to light the importance of providing working from home as an option for people, and it continues to be a, a curb cut to employment for so many, um, allowing them the flexibility that they need for their minds and bodies, and still being able to show up and get their work done in a way that works for them.
Emily Ladau: So I encourage people to think about curb cuts both [00:14:00] literally and figuratively, and look for places that we can create more of them.
Emily Cohen: What would you say are the things that you've seen over your lifetime that have been most impactful?
Emily Ladau: I was born in 1991, so th- at- was actually just a year and three days after the passage of the Americans with Disabilities Act, and that means that I have never known a life without it.
Emily Ladau: And yet, in so many ways, I do still feel like I know a life without it because there are many people who think of the law as a suggestion rather than a rule. That being said, I have seen incredible change, particularly in the digital realm, um, noting that when the ADA first became law- A lot of the technology that we use regularly today was not common, [00:15:00] and so updates have had to be made, um, over the years to ensure that the ADA is broadly interpreted to account for technology.
Emily Ladau: Um, but I have seen significant efforts towards creating more accessible technology for everyone. Um, of course, I have seen commitment from schools, from companies, from organizations, um, to recognize that diversity, equity, inclusion, and accessibility should not just be buzzwords, but, um, should be core values of any work that we're doing.
Emily Ladau: And it's really a shame that where we are now is that a lot of these efforts, um, have either been rolled back or discontinued. But I still see so many people who remain committed to DEI related efforts, not just because [00:16:00] it's the right thing to do, but because they recognize that we are all better for it when every single person truly and meaningfully has a place at the table.
Emily Ladau: I try to remind people as often as possible that if you've met one disabled person, then you've met one disabled person, and I speak from the heart about my experiences, but I am only the expert on my own experiences. And part of disability pride to me is embracing the richness and the depth and the diversity of the disability community and recognizing that if you've heard one person's story, there are millions more stories to hear.
Emily Ladau: So keep going.
Jessica Ticktin (HOST): That was Emily Ladau, a disability rights advocate. Ladau's writing has been featured in The New York Times, CNN, Vice, and HuffPost. [00:17:00] Next up, we hear from Lolo Spencer, an actress, public speaker, and brand partner whose work sits at the intersection of disability, style, and inclusion. She's worked with major brands including Tommy Hilfiger Adaptive, Adidas, Zappos Adaptive, Anthropology, and Meta.
Jessica Ticktin (HOST): As an actress, she's appeared on Max's The Sex Lives of College Girls, and as the voice of Jazzy on Disney Junior's Firebuds. In 2021, she was named one of InStyle's 50 Women Making the World a Better Place. Here's Lolo Spencer.
Emily Cohen: How did you decide to pursue such a visible life, acting, modeling, social media
influencer?
Lolo Spencer: I was working a corporate job at the time, um, in film distribution, and I had a boss at the time who basically almost kinda like threatened to fire me, um, over things that were kinda more her preference than it was the actual reflection of my particular work at the [00:18:00] office. And so I had told myself, um, "I don't ever want anyone to have control over my livelihood again."
Because what she didn't know is had she fired me, which she ended up not doing thankfully, um, but had she ended up firing me, I would've been back on SSI. My health insurance would not have been as good as, like, obviously a corporate job. Um, and it would've just changed my life drastically for the worse, and she had no idea that that was going to be the case.
Now, is that entirely her responsibility? No. But it was just the feeling that I remember having of being like, "I cannot let anybody control my life." So from there I was like, "Okay, well then what can I do where I feel like I have a little bit more control and autonomy over my lifestyle?" And, um, you know, I got my degree in TV production with an emphasis in video editing, and at the time, uh, [00:19:00] people making, like, real money and careers off of YouTube was still fairly new.
So I was like, I remember having a conversation with my mom. I was like, "Yo, Mom, people are making, like, big bucks on YouTube. Maybe I should just start a YouTube channel. I know how to work a camera. I know how to edit. I know how, a- about lighting and all these different things, so maybe I should do that."
And she was just like, "Why not? Like, try it." Obviously, I had no idea, like, what it would really take to build a career off of social media. Um, but I did, and that's honestly how everything started.
Emily Cohen: And was it always the intention to focus that on disability and on your experience?
Lolo Spencer: Yeah, it actually was because I wanted to be different on the internet.
Like, I knew I had to stand out some kind of way, and so I just had to do, like, some really deep thinking. I'm like, "Okay, well, if I did start a YouTube channel, like, what would I even talk about?" And so I just had remembered, 'cause I was freshly out of college at this [00:20:00] time, like a couple years out of college, and I remember in college constantly being asked, like, "How do you do it?
How are you always smiling and you're in a wheelchair? How are you living life and you're in a wheelchair? I always see you at parties. I always see you out. You know, how are you doing it?" And so I was like, well, maybe that's what I should talk about, is just, like, literally how I live my life and the fun parts about it, like going to the parties, going shopping, traveling, and all these different things.
Because when I did do my research on YouTube of, like, other disabled creators at the time, there really were not a lot. It was really just a handful, and the handful of people that I had come across, you know, didn't really represent disability in a way that I had created a life for myself. So I was like, okay, then this is something different, so I'm just gonna move in this direction.
Emily Cohen: You touched upon this in your answer, but, [00:21:00] uh, if you could elaborate, like, for where you are right now, what's something that people consistently misunderstand about your life that you wish they got right?
Lolo Spencer: You know, I feel like people really misunderstand that there is A way to navigate a disabled life that isn't rooted in, um, trauma or turmoil or negative energy, feelings.
Like, there can be joy, there can be laughter, there can be style, there can be sex, there can be fun. Like, there's so many elements to, um, people with disabilities in our lifestyles that I think that's the part that people miss the most is, like, that side of the experience. And when it is witnessed by people who don't have disabilities, [00:22:00] it's not anything to, like, give a gold star around.
Like, it just ... We're just living, you know? Like, don't make it a big deal. Mm-hmm.
Emily Cohen: Well, a- I guess on that, you talk a lot about dating and relationships on
Lolo Spencer: your- You know, I think the thing that people get... And because, you know, I am a woman who dates men, the biggest thing that men tend to not understand is the how it works part, like the actual sex part.
For some reason there is this assumption that as a woman who's specifically a wheelchair user, I would even say, that maybe our vaginas are closed just because we sit down. 'Cause it's always like, "Well, how does it work?" I'm like, "Well, how would it work with any other woman?" It's the same exact thing. Now, if you're asking if I have feeling down there, like am I paralyzed, then that's a [00:23:00] different question, right?
Um, so I think there's that. I think there's this, um, assumption around intimacy in intimate relationships of being incapable of managing them or being a part of in a relationship, as if we don't have the emotional capacity or physical capacity to show up as an equitable partner in a relationship. Um, so I would say those are, like, the two who...
Well, three. I brought up three things. So I would say those are the three things that people tend to get wrong about it, as if, like, it's impossible. And a lotta times I get questions about children too, like, "Can you have kids?" And, and, you know, it's, it's an interesting topic for me in particular, you know.
I would have to do, like, a lot more research, but I think it's kind of the same thing. I don't think any woman is guaranteed to be able to have children, as we've learned in the rise of IVF and surrogacy, right? So, [00:24:00] um, what would make me any different? You know? But because of that, the assumption of that, then the pursuit of the relationship just does not happen, I feel like, at the same rate that maybe a non-disabled woman would be able to experience dating.
Emily Cohen: Mm. What are the conversations that you think the disability community, um, is still unresolved or uncomfortable with?
Lolo Spencer: Ooh, that's a wonderful question. I think that... Hmm. What is a conversation that I think this would-
I think it's that if we talk about the community as a whole, I still don't know if the community has fully grasped that they can live the life that they want to. I, I do [00:25:00] understand that there's so many different factors that come into play as to why somebody may be discouraged to go after a dream or get what it is that they want.
But I think that's the thing of like, um I don't know if people are completely sold on the idea that they don't have to live a life that is isolated from the world, or that, that, um, doesn't include joy and laughter and friendship and relationship. I think a lot of people with disabilities are still struggling with that, and understandably so, um, because there's a lot of things that factor into why I feel so confident in being able to live the life that I live, right?
Um, but I do believe that there's still a lot to unlearn even in our own community around language, around expectation, experience, [00:26:00] and all those kinds of things.
Emily Cohen: Hmm. And there's a lot of structural barriers for maybe why people are not feeling that confidence.
Lolo Spencer: Absolutely. Absolutely. And that's why it's like I, I've never shied away from it.
I'm like, "Look, I understand the life that I have," right? I have a support system of family and friends. Recognize us as humans first, 'cause when you see us as the same person that's at the gas station, behind a register, in your office, in your family, then you start to humanize who we are first. We're not these people that...
There is no those people over there. No, we are the people that are right here in society amongst everybody else. So that would be the, the quickest change. And then I would think immediately after that is if it were me, what would I want? You know? And then from there, [00:27:00] it's just like how would I wanna be approached?
How would I wanna be talked to? How would I wanna dress? Where would I wanna go? Let me just be mindful of that. And if you see anything that you're like, "Wait a minute, why is there no ramp outside of said place?" Bring it up. Bring it up to the person that can make the change, and just see what happens from there.
The disabled community is a community of people first. Remember the humanity first, and when you advocate for people with disabilities, you're essentially advocating for your own future
Jessica Ticktin (HOST): That was Lolo Spencer, an actress, speaker, and disability advocate challenging stereotypes about disability, identity, and inclusion. Earlier in the program, we heard from disability rights advocate and author Emily Ladau, who reminded us that disability itself is not the barrier. It's often the environments and attitudes that exclude people from fully participating in society.
After a short break, correspondent Emily Cohen continues the [00:28:00] conversation with disability justice leader Mia Ives-Rublee. They'll explore how disability advocacy is reshaping public policy, expanding access, and helping create communities where everyone belongs, an essential foundation for a more inclusive and peaceful world.
We'll hear about her journey from a South Korean orphanage to becoming one of the leading voices for disability justice in the United States, and why she believes disability justice benefits all of us. That's coming up after this short break. Stay tuned. For correspondent Emily Cohen and co-founders Suzanne Kreider and Paul Ingalls, I'm Jessica Tichon.
Thanks for listening to and for supporting Peace Talks Radio.[00:29:00] [00:30:00]
Peace Talks Radio, the radio series and podcast on peacemaking and nonviolent conflict resolution. Whether it's the search for inner peace, harmony in our closest relationships, or understanding in our workplaces, schools, neighborhoods, and beyond, we explore it here on Peace Talks Radio. From personal moments to global movements, we consider what it takes to build a more peaceful world.
Jessica Ticktin (HOST): I'm Jessica Ticktin On part one of this program, we heard correspondent Emily Cohen speaking with disability advocates Emily Ladau and Lolo Spencer about representation, accessibility, and challenging common misconceptions about disability. In this second part of our series marking Disability Pride Month, we turn our attention to disability justice and social change.
What would it take to build a society where access, inclusion, and belonging are not afterthoughts, but fundamental values? Emily Cohen [00:31:00] explores these questions in conversation with Mia Ives-Rublee, Senior Director of the Disability Justice Initiative at American Progress. Best known for founding the Women's March Disability Caucus, Ives-Rublee has spent years advocating for disability rights, accessibility, and greater inclusion in public life.
Here's Emily's interview.
Mia Ives Rublee: I was dropped off at a welcome center in Busan, South Korea, by a paternal aunt, and then spent about a year in an orphanage, and then two years in a f- in the foster care system in Seoul, and then got adopted by my parents. I found out that my family actually had four other kids, so when I was born, there were three other kids.
And so was adopted by two parents. They were looking for a kid that had some type of disability because they [00:32:00] had already adopted a kid with a disability. And so I joined their family of two biological kids and one adopted.
Emily Cohen: And what inspired them to adopt a child with disabilities, or two children with disabilities, rather?
Mia Ives Rublee: Actually, in the end, they had adopted three kids with disabilities.
Emily Cohen: Wow.
Mia Ives Rublee: I think they knew that we were kids that were less likely to get adopted. And so my mom was a special education specialist, and so when she was looking, she was like, "Well, I have experience, kids with disabilities, so let's go in this direction."
Emily Cohen: So was disability talked about openly in your family?
Mia Ives Rublee: Oh, very much so. I think the benefit to me was [00:33:00] my parents didn't have that big of a difference in terms of expectations for their kids. And they made me do the same chores and the s- same reading requirements and expected me to get good grades and all of that.
It really set up my life to know that I needed to try to keep up and be responsible for myself.
Emily Cohen: Did your disability share anything with your siblings? Or were there any commonalities there?
Mia Ives Rublee: Yeah, all three of us were in wheelchairs, so that was a commonality, and my older brother had the same type of disability as me, a little more severe.
And I think it, it made my mom very prepared to advocate for us, [00:34:00] and I think that probably, most likely, rubbed off on me.
Emily Cohen: It sounds like your parents really tried to inspire you with models, and they took you to the Paralympic Games in Atlanta. Yeah. Can you talk about that and what you remember?
Mia Ives Rublee: Yeah. So my uncle was a Paralympian.
He was on the football team, or soccer team, sorry. And he had a bunch of tickets that he was willing to give to us, so we went down to Atlanta. I remember the drive very well. There's a lot of sibling fighting during that time. And we got to Atlanta on the day of the opening ceremony, and I remember very vividly, one, it was extremely hot because it's Atlanta in the summer, and we were [00:35:00] strolling around, going towards the stadium, and I just saw all these adults with disabilities, and it was probably one of the first times I got to see somebody who was an adult who had a disability, and that they were living independently, and they had goals and expectations, and they were pushing beyond the bounds of expectations around their physical abilities.
And that really sparked something in me, much like the, seeing the Paralympic flame get lit.
Emily Cohen: So it was as much seeing the audience and the attendees with disabilities as it was the athletes, but it was also after this experience that you got inspired to compete yourself as an athlete.
Mia Ives Rublee: [00:36:00] Yeah. My parents were not super thrilled with this because I have osteogenesis imperfecta, which means my bones break easily.
And so my brother had started doing wheelchair basketball, and it was something that I was very interested in. Loved basketball, played video, basketball video games all the time. But my parents rightfully were worried that I would break. And so when we found out that there was a track team that was gonna get started down in Charlotte, North Carolina That was when she was like, "Okay, you can go push around the track.
I don't think that is gonna cause any issues for you in terms of breaking your bones." And that really got me started in, in athletics and I eventually did [00:37:00] get to play basketball.
Emily Cohen: Yeah.
Mia Ives Rublee: And got to do ... I got to do wheelchair fencing. I also did adaptive swimming and both track and field, and then many other things that really taught me how to set goals for myself, because a lot of times when professionals are talking to you The goals and skills that they're trying to teach you are so low, and s- wheelchair adaptive sports really taught me to increase my expectations and have higher goals for myself.
Emily Cohen: Can you talk about the community as well that the sports world gave you?
Mia Ives Rublee: Yeah. Again, wheelchair sports is the only time I got to hang out with people that were very similar to me, [00:38:00] and so it, it really brought me out of my shell because I was very shy as a kid, and I felt very different from everybody because I looked different.
Not only was I in a wheelchair, but I was also Asian American in a white family, and so it was all just very much, uh... I didn't... I was very shy, and so when I joined wheelchair sports, I gained a community that allowed me to stretch my character and, and be my true self.
Emily Cohen: And you found a community even in college at the university level.
Emily Cohen: You went to the University of Illinois partly because of their adaptive sports program, is that correct?
Mia Ives Rublee: Yeah. So I attended the University of Illinois because it was one of the oldest universities in the country to have an [00:39:00] adaptive sports program, and it was well known for its track program in particular.
Marty Morris was a legendary coach who had tons of athletes who had gone to the Paralympics, and that was my goal, was to go to the Paralympics. So I attended, uh, the university, studied sociology while I was there. I knew I wanted to do some type of career that gave back. It was something that was instilled in me as I was growing up, to give back to the community.
My mom worked at a nonprofit. My dad was a professor. And I just wanted to find some type of career that would allow me to do something similar. And so I was toying around with a couple of different majors but landed in sociology and knew I wanted to go into social work.
Emily Cohen: I wanna hear a little bit about [00:40:00] your time as a social worker and how that led to your engagement with the Women's March, and then- Mm-hmm
and then we'll get to where things are today. So let's start with, yeah, your time as a social worker. This was after college, you went back for a master's degree.
Mia Ives Rublee: I went to UNC to get my master's in social work, uh, with a concentration in child health and mental health. I really wanted, because I had been in the foster care system, I had really wanted to also work in that system.
Unfortunately, I found out really quickly that type of work is not very accessible to me. And so a- after going to school, I applied to a lot of jobs and none of them really wanted to take a chance on me because I was in a wheelchair. And so I eventually landed in a job at vocational rehabilitation [00:41:00] working with adult clients with mental health disabilities.
And that was a time where I really learned crucial aspects of how the system does not work for disabled people and people in general. And it allowed me to see how policies connect with each other and influence each other and create barriers for people, and it was extremely frustrating. I was working in Carrboro, in Chapel Hill, and which is a pretty well-off community, and I was working with people who were living on the street, who were basically [00:42:00] told that they weren't wanted in that area because they kept on...
The community kept on declining building new homeless shelters. And I had a caseload that inched up to three, 300 or 400 people, and that meant that I could only meet with them for a few minutes once a month, and that's not very helpful to people. And I would spend that time talking to them about how- Different types of jobs could affect their benefits, how going to school could affect their benefits, et cetera.
And it was extremely frustrating because here I had people who wanted to work, they were excited to work, but [00:43:00] had to fear losing their Medicaid, which if you know anything about mental health, there's episodes, cycles, where you'll have a good amount of time of stability, and then you may have something happen, some stressor that happens that results in you declining or having some type of mental health episode.
And that can result in you being hospitalized or requiring more treatment or more intensive treatment, which means that you have to have some type of health insurance. And it's so frustrating for me to stabilize somebody and then a couple months later have them come back through the door because they lost their job, they no longer have health insurance, and they need treatment
Emily Cohen: So y- how did you go from working [00:44:00] in social work and managing complicated cases like this to policy?
Mia Ives Rublee: yeah. I think part of it was understanding that I was putting Band-Aids on huge issues that were, you know, bleed- basically bleeding out, and I was getting frustrated. I knew I was burning out, and I didn't wanna become some bitter counselor who could no longer empathize with the clients and was just there to get a paycheck.
And so I was like, "I need to do something else." And so I decided to ma- a commitment to, to get more involved in organizing.
Emily Cohen: One of your first forays in organizing was the Women's March? Yeah.
Mia Ives Rublee: Yeah, I'd been doing some stuff [00:45:00] locally in, in Chapel Hill, and... But I saw that there's this Women's March that was getting put together, and initially I just wanted to volunteer.
And so tried to get in contact with the organizers, but didn't hear back. And then I started seeing things pop up online, people asking, "What about accessibility? What about accessibility?" And I was like, that's a good question, because I have attended protests before, and they are always inaccessible. And I was like, "Well, this is something that I could do."
And so I contacted a bunch of my friends who also had disabilities to find out if they had any interest in organizing a disability contingent And got a bunch of different folks who were referred [00:46:00] to me, and once I had a mass of people, I started contacting the national organizers, and utilized a lot of the dogged determination that I had from my athletics to be like, "I am not gonna take no for an answer."
And so I... And I utilized my research capabilities from my time at Vocational Rehabilitation to find the contacts for a bunch of different people on the national organizing team, and was able to eventually catch up with somebody who also agreed that there needed to be some type of accessibility at the event.
And that really began my national organizing career. And during that time, I was also working [00:47:00] with advocates and policy experts on building some type of platform that really focused on disabled women, and gained experience putting that together.
Emily Cohen: Was there resistance from any of the leaders of the march?
And what was their initial reaction?
Mia Ives Rublee: Yeah, there was quite a bit of resistance, not only the national organizers, but also the disability community as well. I was seen as an upstart because I wasn't known nationally, I was just known locally, and nobody trusted me. And I had to spend a lot of time trying to gain people's trust.
Just was not willing to get, receive a no from people. And so [00:48:00] I just continued to push on the organizers, and got others to contact the organizers when I thought I was stalling out somewhere. And it's funny, one of the organizers came up to me, and they were like You're the person that starts with saying something very nice and then giving something very critical.
And I was like, "Yeah, that's me. That's what I learned to do- Feedback sandwich ... in social work."
Emily Cohen: Yeah.
Mia Ives Rublee: Yeah, feedback sandwich. And I also got a lot of criticism that I wasn't doing things right. But a- at the end of the day, you know you're doing something if you're getting feedback from folks. And I tried to take that feedback as much as possible, and that criticism as much as possible, to make it as accessible as possible.
I [00:49:00] remember it was 2:00 AM in the morning, and I had been told that our ASL interpreters, who were deaf and were paired with hearing interpreters That they weren't going to be allowed to trans- interpret on stage. And I was not willing to hear that. And the interpreters, who were all volunteering, also were not willing to take no for an answer.
And so I had a very frank conversation with folks on the national team saying, "This is a non-negotiable," and that the deaf community was very good at protesting. The deaf president now is a, a historical, legendary protest that happened at Gallaudet in DC. And so I, I told [00:50:00] them, "You are not gonna have any interpreters available, and they will likely protest you."
So I got a yes. I had one deaf interpreter on stage and an, a hearing interpreter on the ground.
Emily Cohen: Okay. Okay. And that was the first time this sort of arrangement had happened at a major-
Mia Ives Rublee: At a major, yeah, protest. Yeah.
Emily Cohen: Okay. Wow. And is that something that has continued at other events? And- Mm-hmm. What does that look like?
Yeah. Is this now institutionalized or be- Um ... the norm? Is it the standard, or is there still a conversation every time where you're having to set this context?
Mia Ives Rublee: Yeah, I don't do as much organizing on the ground now. When I got connected with this guy, Robbie, who owned his own firm that helped to organize big protests in DC, and we worked together on one of the women's marches, [00:51:00] and we learned how to work with one another, and so he gained the understanding of the importance of having representation from the community, particularly on stage when we're doing big events.
And he always okayed us hiring deaf inter- deaf certified interpreters. So it became the standard whenever I worked with him.
Emily Cohen: You've talked a little bit in past interviews that I've read about allyship and being- Mm-hmm ... open to criticism, which I think- Mm-hmm ... is definitely a theme of that in this situation.
Can you talk about what good allyship actually looks like in practice?
Mia Ives Rublee: Yeah. One thing that I noticed, particularly in social work, was that oftentimes we were coming into communities and doing what we thought [00:52:00] was right for those communities. Particularly historically, social workers did that. And the one thing that I really learned in terms of allyship and in, in terms of partnership is that you have to be willing to listen, and you have to be willing to be led Because if you are an individual that is not willing to listen, who is not willing to take a back seat, then you aren't doing your organizing correctly.
And one of the best examples that I have of that was I was working on the Warren campaign for president, and I was a constituency manager in North Carolina, and we were trying to connect with this political organization [00:53:00] that organized South Asians. I sent email after email saying, "Hey, I'd love to connect with you," and didn't hear anything back.
And then I finally, like the last two months of when I was working on the campaign, I got him to respond back to me. Again, that dogged determination was very helpful for me. And he was like, "Okay, I will schedule a meeting with you." And he came into the office, and the first thing he told me was, "I am not as liberal a- or progressive as you.
I am not going to be voting for your candidate. I don't know why I am meeting with you." And I was like, "That, that's fine. I'm not here for that. What I wanna hear from you is what are the issues that are going on in your community? What are the things that you wanna see in a [00:54:00] candidate? What are the policies that you wanna see?"
And we sat there and talked for 45 minutes, and at the end of that conversation, I spent a lot of times just asking him open-ended questions. And at the end, he said he appreciated that I was there to listen, and he actually invited us to come to an event that he, his organization was hosting, and he said that we could talk to them and hear from them directly about the issues that they were concerned about.
That was one of the greatest lessons for me and for my organizers to see how important listening is, how important taking a back seat and-
Emily Cohen: What are you working on now?
Mia Ives Rublee: The conversation.
Emily Cohen: What's at the frontier of disability rights?
Mia Ives Rublee: Oh, yeah. I wish we could be working on more actively [00:55:00] pushing for new legislation that would get us to new heights.
But unfortunately, due to the current administration, we are continuing to have to play defense. And the H.R.1 bill passed, and we have been trying to analyze the impacts that it will have, particularly on disabled people around Medicaid and SNAP and other work. We are also trying to plan for the next four years and in hopes that we will have a more friendly administration where we can actually do offensive work.
And right now, we're working on some home care policies and also sort of transition work [00:56:00] Transition, transitional services for disabled youth so that we can have a way to get them from when they have an IEP and they're under the IDEA in primary and secondary school to going to college or going to com- going to university or going to community college, and then getting a job.
Emily Cohen: I want to know, what gives you hope right now? Where do you feel there's a future?
Mia Ives Rublee: Two things. One is the amount of coming together that communities have had. I've seen more communities reaching across their community to other communities to work together, and that is something that happened during the Civil Rights Movement.
It was less common in the last two decades, but [00:57:00] I've seen more and more that communities are working together, trying to bridge the gaps and have conversations and push for similar issues. Secondly, I think as a young organizer, when I was a young organizer, I was always told that we can't change the system in large ways.
We have to do it incrementally, but this administration has shown that you can do big things quickly. And I think given that, and given that we are now seeing structures fall, that we have an opportunity in a friendlier administration to actually push for the things that we want and build structures in a way that is much more equitable for communities.
Jessica Ticktin (HOST): That was Mia Ives-Rublee, [00:58:00] senior director of the Disability Justice Initiative at American Progress, speaking with Emily Cohen. This program is part of our observance of Disability Pride Month, a time to celebrate disability identity, challenge ableism, and recognize the contribution of people with disabilities in every aspect of our communities.
To learn more about Mia Ives-Rublee and the guests featured in this series, visit our website at peacetalksradio.com. While you're there, you can hear hundreds of our other programs exploring peace building, dialogue, social justice, and non-violent approaches to conflict. That's at peacetalksradio.com.
Support comes from listeners like you and the McCune Foundation. Nola Davis Moses is our executive director. Ali Adelman composed and performs our theme music. For Emily Cohen and co-founders Paul Ingles and Suzanne Kryder, I'm Jessica Ticktin. Thanks so much for listening to and for supporting Peace Talks Radio.
