August Conversations: Sarah Blahovec and the Little Lobbyists

Inside the first-ever campaign training program for disabled candidates with its creator, Sarah Blahovec; PLUS: Elena Hung and Roger Stone on celebrating 2 years fighting to protect the ACA with the Little Lobbyists. Subscribe to Off-Kilter on iTunes.

This week on Off-Kilter, we continue our series of August conversations with a handful of “interesting progressives” doing interesting work on poverty, inequality, and the issues they intersect with, whom we got to catch up with on Radio Row and Netroots Nation this year. This week, for an all health/chronic illness/disability episode, we’ve lined up conversations with Sarah Blahovec, the founder of Elevate, the first-ever training program for disabled candidates — PLUS: Elena Hung and Roger Stone of the Little Lobbyists, as the org marks its 2-year anniversary of fighting to protect the ACA and Medicaid. And we bring back Rebecca’s conversation with Kristen Arant, author of “Medicaid Work Requirements Would Have Killed Me.”

This week’s guests:

• Elena Hung, co-founder, Little Lobbyists
• Roger Stone, Little Lobbyists
• Kristen Arant, activist, mother, student and author of “Medicaid Work Requirements Would Have Killed Me.”

For more on this week’s topics:

• Read more about Elevate, Sarah Blahovec’s training program for disabled candidates
• Read Kristen’s essay for TalkPoverty, “Medicaid Work Requirements Would Have Killed Me”

This week’s transcript:

♪ I work and get paid like minimum wage

sights to hit the class by the end of the day

hot from downtown into the hood where I stay

the only place I can afford ’cause my block ain’t saved

I spend most of my time working, trying to bring in…. ♪

REBECCA VALLAS (HOST): Welcome to Off-Kilter, powered by the Center for American Progress Action Fund. I’m Rebecca Vallas. This week on Off-Kilter, we’re continuing our series of August conversations with a handful of interesting progressive doing interesting work on poverty, inequality, and the issues they intersect with whom we got to catch up with on Radio Row at Netroots Nation this year. This week for an all health and chronic illness and disability episode, we’ve lined up conversations with Sarah Blahovec, the founder of a new initiative dedicated to helping disabled candidates run for elected office, plus the Little Lobbyists as they mark their two-year anniversary of fighting to protect the ACA and Medicaid. Let’s take a listen.

Sarah, thanks so much for taking the time to join the show.

SARAH BLAHOVEC: Thank you.

VALLAS: So, as part of a series of conversations I’m having with interesting progressive leaders who are doing work that deserves a lot more attention, I’m really thrilled to be sitting down with you to talk about a project that you founded, that you’re leading that’s all about supporting candidates with disabilities in running for office. Talk about the origin of that project.

BLAHOVEC: Yeah, yeah. So, I work for the National Council on Independent Living. We are the longest-running disability advocacy organization in the country. So, I have been working there for three years as the disability vote organizer. And in that work, we’ve worked on voting rights issues, but more importantly, identified a need to talk about leadership in elected office for people with disabilities. And how do we increase that whenever there’s basically no information out there on people with disabilities serving in leadership roles? So, we started working on how do we make campaigns more accessible and inclusive? And that was kind of the start of it. As we started to research as well, there’s a lot of information out there on campaign training in general and for certain marginalized groups, but nothing for the disability community. So, really starting into a process of identifying candidates and elected officials with disabilities and making sure that we were talking to them to learn about their lived experiences: what were the challenges and opportunities they experienced.

And one thing that we really identified a need for was having our own kind of training program. As much as we can make other organizations more inclusive of people with disabilities — Sorry. Excuse me. As much as we can make these organizations more inclusive of people with disabilities, we need something to address the fact that there are both attitudinal barriers and literal access barriers for people with disabilities running for office. People have been pushed out of candidate forums that their local parties held because they’re not given accommodations. There’s been a lot of ableism around people with disabilities serving in elected office or campaigning. So, we wanted to have a program that specifically addressed that.

VALLAS: Well, and talk a little bit about what some of those barriers are. It might be common sense to people when they start to hear this conversation that oh, wait. Actually, wow, I hadn’t noticed before, but there aren’t a ton of folks in elected office with disabilities. They might be hearing you speak and wondering why is that. What are the main barriers to running and to holding elected office for folks with disabilities?

BLAHOVEC: Yeah, yeah. So, there’s a lot of challenges. It’s not a one size fits all thing, obviously, because there’s so many different types of disabilities. But we have experienced people being kept out of events because they’re inaccessible, even events where they’re supposed to be speaking at. Deaf candidates have not been provided interpreters for participating in local forums. People have experienced a lot of barriers in terms of the ableism that exists around people with disabilities serving. So, ideas around our capacity to lead and whether or not we’re up to the job, whether it’s due to a chronic illness or due to mental health conditions. So, there’s just a lot of challenges throughout the process. There’s even access barriers in just getting the information you need to file to run for office. But really one of the biggest challenges for our community I identified is just a lack of knowledge around how do you do this? How do you fundraise, in particular, especially from a community that’s mostly known as being low-income and sometimes that has people who are on SSI, SSDI, Medicaid. And trying to figure out the intricacies of who should you be running for office, can you, and how do you actually do that?

VALLAS: So, talk a little bit about how you yourself got into this work. This is a real passion project for you. It’s something that wasn’t handed to you as a task. It was something you really conceived of. How did you get into progressive activism, and what drove you to do this work in ways that I know — and I’m spoiling a little bit of where you’re going to go with this, but I know — from conversations you and I have had off the airwaves, it hasn’t always been easy.

BLAHOVEC: Yeah, yeah. So, I primarily have an invisible disability, a chronic illness, and so I was not very well connected to the disability community whenever I got out of college. I was just trying to figure out how I would find a job in the area that I was interested in, which at the time, was foreign policy whenever I couldn’t identify people who were like me who had done it before. And I ended up finding the disability community through that and finding mentors, not in foreign policy, but in just policy in general. So, whenever I started writing, blogging about this, just learning about the community. And it has been really interesting to kind of figure out my niche in this work. Because the disability community is traditionally dominated by people with physical disabilities, and there can be kind of an informal hierarchy of who is heard. I’ve definitely experienced lateral ableism within the movement, with people talking about, you know, they want to distance themselves from people with chronic illness because there’s all these ideas about the social model of disability and disability not being seen as a health problem. I’ve experienced ableism from people who’ve said that I need to be doing activism in a certain way. And so, it can be really frustrating, but also, there’s a lot of work being done by the younger, more diverse people in the movement, generally. Disabled women of color in particular, I find, are the ones who are most embracing of changing the narrative around this and getting rid of these structures that are in the disability community that reinforce white male leadership and don’t leave room for activists who and advocates who do things differently.

VALLAS: You actually launched this candidates project from a hospital bed, and that was something you were very public about.

BLAHOVEC: Yes.

VALLAS: You tweeted openly that that’s where you were launching it from.

BLAHOVEC: Yeah, yeah. So, I ended up in the hospital briefly after we made the announcement of the official program, and it was very challenging because I did not want to see the momentum we had — There was so much work to be done around this and especially because I just, due to the way my job has been funded lately, I’m a part time worker technically. But I’d been working around the clock and on the weekends as well to make sure that we got the word out and got a high attendance and support. So, I ended up in the hospital for a couple days, and I honestly, I did a full eight-hour day on a Friday from my hospital bed because I didn’t have anything else to do anyways. The hospital’s kind of boring. I did an interview with Time magazine from a hospital bed. And that’s just this is what my life looks like, and I want to be open about that because I’ve been in situations where it’s scary for me to be able to talk about disclosing or not disclosing my disability. I don’t really have a choice at this point because first thing, I’m so public about it, but also at some point, my needs will come out and the circumstances around my chronic illness. So, I’d like to show that I’m able to do this work, and I make it work for me.

At the same time, I don’t want that to be used to say that other people should be doing it the same way. I don’t generally encourage people to work from a hospital. That’s just how the situation was at that time. And I like to be realistic about this is the work. This is how I do this work. And I can be just as successful despite the belief that, especially in political spheres, that this work has to be done in an office and you’re grinding all day, all weekend, and not taking time to take care of yourself whenever literally, that’s something I have to put first.

VALLAS: One of the things that you have been incredibly public about is not just that you live with a chronic illness, but also that you live with mental health challenges.

BLAHOVEC: Yeah.

VALLAS: These are two things that I have in common with you and that we’ve talked a lot about at various points and I know we’ll continue to talk about. I also want to just say it on a personal note in that moment how much I appreciate the community that you have been a huge part of providing for me in navigating some of those issues myself, particularly on the chronic illness front. As someone with my own share of things that we have in common that make life challenging and interesting when it comes to how I digest food and other things that are related to that, which I’ve talked about on the show. But back to where I was going to ask you a question: one of the things that you’ve been public about in the context of the confluence of physical illness as well as mental health is that there’s almost a hierarchy that can sometimes exist within the disability world and within the way that people perceive people with disabilities that we actually see playing out within the context of the barriers to running for office that your project is focused on dismantling.

BLAHOVEC: Yeah, yeah.

VALLAS: And it manifests often in how we — and this is something you’ve spoken a lot about, including at Netroots where we’re talking now — how we talk about Donald Trump and the words that we choose to use. And as you have argued passionately, there are real consequences that stem from using the c word, which we just last week or a couple weeks ago banned on this show. What is the picture when it comes to the barriers that candidates who live with mental illness and mental health disabilities face that might be even more significant than the barriers that folks with physical disabilities face in running for office?

BLAHOVEC: Yeah. So, there’s absolutely a challenging environment right now, especially in progressive politics. We have certainly seen a lot of armchair diagnosing of the president of basically every possible diagnosis that they can look at. And it’s frustrating because he is essentially untouchable by what this is generating. He’s not going to be hurt by this talk, but the people who are going to be hurt are the people in the community who are being tied to his actions. And it’s really frustrating because there’s a difference between having a mental illness and being a bad person. He is the being a bad person part, in my opinion. And you know, I know several people who are amazing leaders with mental health conditions, and it’s creating an increasingly challenging environment to be open about it because you’re opening your campaign to critique. And these things will come out in your campaign because everything comes out in your campaign. So, you either have to try to hide it or talk about it, and generally, it will be coming out.

And the thing that is kind of scary is also the fact that just the way that we talk about it could increase those challenges for people who are undergoing treatment or continue to undergo treatment for mental health conditions. You know, it’s something, at least for me, that it’s you’re never really cured from it. You just you learn to adapt to it. And whenever you have people who are attacking you for that or using that as a basis for forming policies, whether it’s policies on gun control or talking about having presidential fitness tests, which are ablest in multiple ways, it is really frustrating. Because it makes it more difficult for them to be seen as valid leaders.

And there are people who are challenging this. I track candidates with disabilities. One that I particularly look up to, Mariah Parker ran for Athens-Clarke County in Georgia. I think she was for a local office, maybe the clerk’s office. She is open about having depression, anxiety, and substance use disorder, which I would say is one of the most stigmatized communities even within the disability community right now. So, she has been open about that, and she went viral last year for being sworn in on the Bible, or instead of the Bible, the biography of Malcolm X. So, you know, people like that, they’re challenging this narrative, and it is a really hard thing to do. Because again, whenever you’re dealing with mental health challenges, you’re going to, getting the feedback that you are less than because of it is going to have a direct impact on you.

So, we really have to be careful in progressive spaces. There are many tangible things we can work on with regard to policies, and I think that the attacking mental health thing is really a kind of a copout. Because you see that instead of addressing the what the real problems are, it’s kind of derailing and looking towards oh, we can just focus on this like personal flaw we see that you have instead of what can we actually do that’s constructive. So, I really hope that we see this narrative changing. I think there’s always going to be people who are pushing this, so it’s something that we have to be vocal about in the disability community. And for people like me, I am in a privileged place that I can talk about it safely and not worry about the ramifications for my job. And I know that many people can’t do that. And so, I feel like it is my responsibility to be able to be open about that and honest and challenging this for the many people who can’t.

VALLAS: Something that you recently, in recent weeks, have been speaking a lot about has been the observation that unfortunately, none of the 2020 presidential candidates — and we’re not going to talk about individual candidates now — but that none of them actually have accessible websites.

BLAHOVEC: Yeah.

VALLAS: Talk a little bit about that. And do you have any free advice for any of the campaigns that might be listening?

BLAHOVEC: Oh, absolutely. So, it was reported a couple of weeks ago that all of the campaigns for 2020 had inaccessible websites by Miami Lighthouse for the Blind and Visually Impaired. They produced a big report on it ranking the campaigns, and none of them really passed muster. And what I heard afterwards — So, in my role at NCIL — which I’m speaking right now from just as a personal advocate and not a representative NCIL — but at NCIL I emailed resources to all of the campaigns. And while I did not hear back from them directly, I heard back through the community that several campaigns were immediately jumping on it. They were contacting Miami Lighthouse to talk about what can we do better. I know some campaigns have put out accessibility statements and commitments. So, that’s really what we want to see. You know, we’re not trying to attack campaigns. This is something where we can’t even be involved in the policy if we can’t even get in the door. And it’s something that also campaigns need to see as beneficial for them is investing in doing accessibility the right way because we’re one quarter of the voting, or we’re one quarter of the country. We are 15 million, over 15 million voters. And you’re going to lose support if people can’t come and see your policy priorities. If they can’t navigate your donation form, you’re not going to get that money. And so, you’re really passing up, you’re kind of hurting yourself with not making accessibility a priority.

So, my advice on that would be you need to understand that accessibility is a practice. Just like if you’re talking about websites, making sure that your websites are secure and usable, make sure that they’re accessible too. Make sure your events and information are accessible. And on our website, on the NICL website, we have several guides for this. We have a guide that we wrote for, originally for election officials and local election websites because they should be, federally, they should be compliant with federal election laws. But it is just a general resources guide on how do you identify the issues? What are they actually like? You can even literally experience them through simulators. And how do you fix them? We also have a more general guide for campaign inclusion talking about disability etiquette, event accessibility. And we just want people to know these are free and open resources that you can come and look at and use them to guide your policies around accessibility and inclusion.

VALLAS: And a lot of the advice that you were just providing also really holds true not just for candidates, but for progressive activists.

BLAHOVEC: Yes.

VALLAS: And that’s a lot of what you’ve actually been working with progressive activists to try to help people learn how to do better on.

BLAHOVEC: Yeah, yeah. So, I work with a lot of especially campaign training organizations across the spectrum. We’ve worked with nonpartisan programs. I’ve talked with some conservative programs, progressive programs. And unfortunately, there’s an interest in doing this work, unfortunately, a lot of times it comes across as it’s not really a commitment. They just kind of want the problems to go away without having to understand them and actually invest in changing them. It takes time, it takes resources, usually, and it takes a commitment to actually listening to the experts who are telling you this isn’t going to work. So, I’ve had organizations that wouldn’t talk to me after I told them they need to caption their videos, which captioning videos is just an issue of universal design as well. Whenever the vast majority of people are not going to listen to your video, you’re just not even reaching your audience.

VALLAS: Sort of an example of the curb cut philosophy.

BLAHOVEC: Yes, yes.

VALLAS: It’s definitely helpful for people with disabilities, but also helpful for everyone.

BLAHOVEC: Absolutely, yeah. And so, it can be challenging because I think there’s interest, there’s a slight interest in doing better, but I don’t think they truly understand sometimes that it’s going to take some commitment from you, you know, listening and learning and making changes and not vetoing those changes if you think they’re too inconvenient for you. It’s something that it has to be done, or you’re going to continue alienating a large part of your base, especially for these groups. These groups are trying to address women and other marginalized groups. These aren’t discrete organizations. So, these are not discrete groups. These are not discrete demographics. There are multi-marginalized people with disabilities in your space. I can guarantee that. So, if you don’t have information that is accessible to them, you are leaving out especially more marginalized people in your spaces who experience whatever you’re trying to address and ableism as well.

VALLAS: So, Sarah, in the last couple of minutes that I have with you, what’s the road ahead for the candidates program, and where can people go to learn more?

BLAHOVEC: Yeah, yeah. So, we just concluded the pilot series of webinars, five 90-minute webinars on campaign topics for, especially for first-time potential local and state candidates. And those are available online for free now. Anyone can watch them. They are available at NCIL, N as in Nancy, NCIL.org/elevate. That is the name of the program, the Elevate Campaign Training Program. We are looking to evaluate the programs, what we can do better, how we can expand it. And we’re looking to hopefully do another five webinars. One of my immediate goals is we want to raise 10,000. We’re already about 3,000 of the way there to be able to do more campaign training. But we also want to expand it beyond that.

You know, this is something that has to be a cultural shift. Because there’s so many issues for people with disabilities in campaign spaces, and one organization can’t fix that; one program can’t fix that. So, having more conversations about why people with disabilities should run for office and how it’s important to see us reflected in office, how people with disabilities are often natural leaders in their communities because they deal with an environment that isn’t built for them and have unique problem-solving capabilities due to that and some great resilience, that often translates into being a great local or state or national leader. So, making sure that we’re having intentional conversations about that and just trying to connect with people and make sure that it is known that someone’s trying to do this work and support people as candidates, and make sure that they have the information that they need.

VALLAS: I’ve been speaking with Sarah Blahovec of the National Council on Independent Living. And you can see all of those fantastic resources, of course, on our nerdy syllabus page where we’ve got links. Sarah, thank you so much and congratulations on all of the amazing reach that this project has had so far. I’m so thrilled to see where it goes.

BLAHOVEC: Yeah. Great. Thank you so much.

VALLAS: Don’t go away more. Off-Kilter after the break. I’m Rebecca Vallas.

[hip-hop music break]

Welcome back to Off-Kilter, the show about poverty, inequality, and everything they intersect with, powered by the Center for American Progress Action Fund. I’m Rebecca Vallas. Continuing our series of conversations with interesting progressives doing interesting work at the intersection of poverty, inequality, and other issues, we are talking next with the Little Lobbyists as they mark their two-year anniversary of fighting to protect the Affordable Care Act and Medicaid. Let’s take a listen.

Thanks to you both for taking the time to join the show.

ELENA HUNG: Absolutely, thanks.

VALLAS: And Elena, thank you for coming back.

HUNG: Thanks for having us!

VALLAS: So, before we get any further into your story, Roger, Elena, I want to start with you to tell the origin story behind Little Lobbyists. You’re about to celebrate your second birthday, which is unbelievable in a lot of regards, both because it feels like you’ve been around for decades at this point, and also because it feels like it was just yesterday.

HUNG: Yes, that is exactly how I would put it. It feels like yesterday, and it feels like a lifetime ago. We just turned two. So, about exactly two years ago, at the height of the health care repeal fight, a group of families and I got together and said, you know, we have to do something. We’re all parents of children with complex medical needs and disabilities. We were scared. We were worried, terrified. And in a moment of what I describe as hope and desperation, we decided to show up on Capitol Hill and really tell our stories, put a face on health care. So, that was two years ago. Wow!

VALLAS: And how did you personally come to this work? I know our listeners are probably familiar with you, but it’s a pretty compelling story.

HUNG: Yeah. So, I’m a mom of Xiomara. That’s how I’m known on Capitol Hill — .

VALLAS: Xiomara’s mom.

HUNG: Xiomara’s mom. And Xiomara just turned five. So, that is amazing. She’s in summer camp right now, which I’ve just like in awe. She’s starting kindergarten in the fall. And you know, none of this was guaranteed. I just honestly did not think any of this would happen. She spent the first five months of her life in the Neonatal Intensive Care Unit. She was diagnosed with a number of medical conditions, a.k.a. pre-existing conditions, affecting her airway, lungs, heart, and kidneys. So, you know, it’s been a really long way to here. And she’s in summer camp right now! And all of that is possible because of the Affordable Care Act. It’s possible because of Medicaid. It’s possible because of the access to the amazing care and services that she’s received. So, this is extremely personal to me.

VALLAS: And that’s what got you involved in activism for the first time.

HUNG: Absolutely. You know, I think I was always politically aware, but not politically active in this way. And over the last two years, it’s definitely evolved. So, two years ago, three years ago, I started because I was fighting for Xiomara, right? That’s my baby. I’m fighting for her. I’m fighting for very specific things for her. I wanted to make sure she had the medication she needed, had the services that she needed, the skilled nursing at home that she needed to support her. So, all of those were very concrete things. And I would say very quickly, I realized it was more than that. It was, the fight was way bigger than Xiomara. It was way bigger than me. What does it mean that she had her medical care, but then she couldn’t go to school, right? So, I had to fight for her to be able to go to school like her big brother. What does it mean that we fought for her wheelchair and got her wheelchair? But, you know, there are no ramps at our favorite restaurant and our favorite places in the community. So, that meant we had to fight for community inclusion.

So, the fight very quickly became way bigger than us fighting for Xiomara, fighting for all of her friends. It doesn’t mean anything to me if she gets to go to school and do all these wonderful things, but her friends don’t. So, Little Lobbyists, to me, is just really way bigger than me, way bigger than Xiomara, and it’s being part of the disability community and fighting for all of these things for our kids to grow up in a world that includes them, that actively includes them.

VALLAS: As you mark two years, which is just incredible.

HUNG: Yeah, you keep saying that.

VALLAS: And congratulations and happy anniversary, right? [laughs]

HUNG: Thank you! [laughs]

VALLAS: We both keep going, “Oh my god!” But as you mark two years, you’re obviously doing a lot of reflecting, a lot of looking back. What has been the evolution of the organization, and what is it today that it might not have been? What is it today that you might not have seen coming when you were starting the organization two years ago?

HUNG: I think we’re all really realizing the power that we have within ourselves, right? That number one, I think we’re all coming to it and realizing we’re not just fighting for our own individual kid, for their own individual accommodations, but we’re fighting for all children. And I believe at the core of everything I do, that you’re a real advocate if you’re an inclusive advocate. So, we’re talking about we came to this because of health care, obviously. But so many more things affect our children’s lives: so, it’s health care, it’s education, it’s community inclusion. But we keep looking broader. You know, all of us are paying attention right now and seeing what’s happening at the borders, for example. We’re reading these stories about children being ripped apart from their parents. And you don’t have to be a parent to understand what that’s like. But we see these children, and we see our children. We’re reading reports about children having their medication confiscated. We know, Little Lobbyists, we know what it’s like when our kids don’t get the medication they need. We know what it’s like when our children who use wheelchairs don’t have the access they need. So, we see these children at the border, and we see our children. So, we’re really trying to, you know, again, this is so much bigger than us and our families. We’re fighting for all of us.

VALLAS: So, Roger, turning to you, would love to hear you share a little bit of your story of how you got involved working with the Little Lobbyists, how your family got involved working with this organization.

ROGER STONE: Sure. Well, I mean it really goes back to, and comes from, my son Robert. And he, to tell a little bit of his story, was 13 months old. Everything, there was no sign of anything. And in a little less than a week, he lost almost all voluntary muscle control. In fact —

[audio engineer interrupts to fix audio issues due to high background noise and conversations, and asks Roger to restart; not transcribed] I’m really glad he caught that before you get too far.

VALLAS: Do you want me to ask the question again?

STONE: Sure.

VALLAS: Helps me. So, Roger, turning to you, you’ve been working with the Little Lobbyists, and your family has been working with the Little Lobbyists. How did you get involved with this organization, and how did you come to this work?

STONE: Well, I mean actually in a sense it’s because I’m the father of a Little Lobbyist who is himself, he’s my son Robert, very active and excited to be involved and to be out meeting with the Speaker of the House and the Senate majority leader. That’s my son, Robert. When he was 13 months old, after seeming like nothing was wrong with him, in the course of a little less than a week, he lost all voluntary muscle control. When we took him into Georgetown Hospital that first night, I mean they examined him, they ran all kinds of tests, and they told us to go home and check him in to the hospital itself the next morning. Years later, we found out that the reason they did that is because children who present like Robert usually last a couple months. And the idea was you know, give them one last night at home together as a family. And that was 21 years ago.

And it was actually 14 years from then until they were able to diagnose Robert, and that was, as my wife says, science finally caught up with Robert. Which is rather than looking for a genetic defect that they’ve identified, you know, sickle cell anemia or Tay Sachs, what have you, they sequenced all of Robert’s active genes. So, that’s your genome has it, they have little letters, letters for it, but it’s 13 billion of them. Oh, excuse me, three billion of them. Robert had one that was off, and it was a condition called Dystonia 16. He is, as far as we know, still the only confirmed case in North America. It was found originally in seven kids in Brazil that were inter-related. And the Rare Genomics Institute found, did the search of that defect, found that article, and therefore was able to diagnose Robert. He now communicates like Stephen Hawking with a computer he controls with his eyes that he also composes poetry and music on and now lobbies.

VALLAS: And what has your experience been like being part of the health care fight? What has been the experience working with Little Lobbyists? And not just for you, but has Roberts shared with you what it’s meant to him?

STONE: Well, yeah. I mean Robert, we always joke about him being such an incredible ham and frankly a little bit of a flirt. But I mean one of the things, the worst parts of disability and having for a child with a condition like that and/or being a parent, really is the isolation. And for Robert to get out and to have his story and telling his story have that kind of an impact. I mean it’s wonderful. I mean it’s part of his, he’s now out of school, and this is a huge part of who he is.

HUNG: He’s part of the community. I’m sorry to jump in.

STONE: Yes.

HUNG: But I feel like he’s definitely part of our community. And that isolation that you speak of, I’m sitting here nodding, and I relate so much. So, yeah, the community is so, so important.

STONE: Oh, and I mean this is even going back before the getting involved with the Little Lobbyists, but realize over the last few years, you know for me personally, as the dad of a child with complex medical needs, it’s funny, I mean in a sense, coming out of the closet. I mean in my business interactions and everything and just chatting with people and them not wanting to feel — felt for a long time — burden them with telling them about Robert. They’re telling me how their kids are learning to drive or something that, you know, that Robert can’t do. And what I found, you start being open about it, telling them about Robert. Usually, they have a child or a relative, and you know, I mean this community it’s sort of like what’s happened with the LGBT community. I mean it’s powerful and having an impact because it’s now out there. And it turns out that actually, disability touches almost everyone.

VALLAS: Elena, we were talking before we started taping about how one of the big new directions, not an altogether new direction, but a new emphasis and priority for Little Lobbyists as it heads into its next two years and many sets of two years beyond that I’m sure, it is really the lifting up of dads as an intentional part of what you’re seeking to do. And Roger is just one of those dads. Would you talk a little bit about that, given that the moms are always so frequently front and center in a way that people maybe take for granted and haven’t actually noticed or thought all that much about?

HUNG: Yeah. I mean I’m so excited Roger’s here with me in part because of that. I think Little Lobbyists has been identified at times as being a moms’ group you know, along the lines of Moms Rising and Moms Demand Action. And yes, moms have sort of like our little circle. We’re the ones who are up at usually at 3:00 in the morning chatting with each other or texting back and forth, and there is definitely a bond there. But Little Lobbyists is a family group. You know, it’s not just the moms. We uplift the children. Children both Xiomara, age 5, and Robert, age 22, and the dads. We want the whole family involved. We want aunts, uncles, grandparents, brothers, sisters, you know, everybody involved. And one of the things that we talk a lot about is making sure that dads have a place in our community and a role in that.

But yeah, I think Roger, a bit of what you talked about in terms of just coming to terms and sharing your story, I hear that from a lot of dads. I think it’s where moms a little bit more readily talk about it. And know not to overgeneralize here, you know, where a lot of moms are ones showing up at the doctors’ visits and everything. Again to, a little bit of overgeneralization there, but we want to see more dads step up and share their side of the story. Because a dad’s perspective, as my husband tells me often, is not necessarily the same as the mom’s perspective. And so, we want to make sure that we hear from everybody in the Little Lobbyists family.

STONE: Oh. Yeah, and I guess if I can do a little message out to other disability or fathers of children, children like Robert. I mean as you’re dealing with every minute of every day, I mean there’s, it’s overwhelming. I mean there’s more that needs to be done really, than any couple can do. So, there has to be, ends up being a division of labor. And probably like in our family, I mean when Robert got sick, I had the higher-paying job. So, the bulk of the making money had to be on me. And therefore the bulk of keeping Robert alive and cared for ended up on Geneva. But you know, with Little Lobbyists, then we’re both involved. Is it’s really something where both parents can be involved, where it can be part of the dad’s responsibility. And it may be a sad reflection on our society, but dads’ voices really have an impact.

VALLAS: Elena, one of the things that Little Lobbyists does somewhat differently, and I say that in a good way, than some other organizations is you really make a concerted effort not to speak for the children, but rather to elevate and amplify their voices and to be clear when parents are speaking as parents. Why is that so important to you? And would you talk a little bit about how you do that and how you thread that needle, given that that can be really challenging?

HUNG: That’s a great question. And anyone who has met Xiomara knows she has her own voice.

VALLAS: And her own side eye.

HUNG: Yes. Absolutely. And she’s not about to let anyone speak for her, especially not her mom. So, one of the very, very first things I did when Little Lobbyists started, even before it started, before we were officially Little Lobbyists, I remember vividly we were on the Hill. We were at every protest, at every march, every rally showing up. And the first thing I wanted to do is really meet with the disability community, disabled adults. I sought out this community that I was really not a part of — that wasn’t really part of my world before — and just started hearing from them what their experience was like. And it was a crash course for me, to be completely honest. I heard from a lot of disabled adults, specifically disabled adults who’ve been disabled since they were young children or since birth. And I learned from them, from their life experience. I’ve heard from so many of them who carry this trauma with them of their very well-meaning parents who try their best, but didn’t quite do what was in the best interest of them, them the disabled adults. And that has stuck with me since the very beginning.

You know, I am vividly aware that everything I say and do could affect my daughter’s life. I think about every social media post that I do and what teenager Xiomara might think of that. So, that is something that we talk a lot about within our group, like our kids have voices. Our kids have their own thoughts and feelings, and we should not project that onto them. I’m careful to, when we share our story, that it is the parent’s perspective. This is how my experience is in terms of our family. I share some of her stories to the extent that I can with her consent and approval. I show her the pictures. She tells me, “Yes, you can take my picture. No pictures.” And so, I try to do that.

I know a lot of children within our group also have I/DD, intellectual disabilities, who may or may not be able to consent, who will be, who may be non-speaking, but they definitely can communicate. You know, Xiomara just started speaking, but she was able to communicate since day one, really. So, we have a broader understanding of communication means. We have children who will communicate via pictures, and we have them advocate that way. Roger was saying earlier that Robert uses an AAC device to communicate, and he was actually at a rally recently, right? Several rallies and a press conference. So, Robert was up there speaking for himself using his device. And we want to show the visual of that. So, that’s, I think, so important. And sort of encourage our children who are wanting us to speak and say, “Look. There’s many ways to get your message across.” Yeah.

VALLAS: So, finishing out with you, Roger, do you have hopes that Robert’s example might mean something to other children out there who are involved with Little Lobbyists, given that he’s one of the older lobbyists of the crew? Is that something that he’s expressed interest in or that you have seen already happening with folks like Xiomara developing community with your son?

STONE: Yes. I mean Robert, I mean he has always loved being around people and wants to be and wants to help. He, because his condition is so rare, we were asked, he was asked actually, to donate some of his cells for research, which and he was incredibly excited about that. And that I mean right now, I think it’s being used for research that may lead to something in Alzheimer’s or Parkinson’s. And that he can have and wants to have that incredible kind of an impact. And I mean I certainly, although I did not, definitely would never have shared this with him, he spoke at a press conference with a bunch of the Senators and one of the, I think it was Senator Murphy, posted the video on his page. And there were hundreds of comments, you know, 90 percent or more positive, but some not. A few from disability truthers. And I can tell them now Robert is not faking it. But more disturbing, folks who were questioning even Robert’s right to exist and the resources. And I mean no human should have that, but I look at also now the impact Robert’s having first in the medical research and now with the disabilities. And with the fact, I mean as I said, he has one out of three billion letters off. And that sort of genetic time bomb went off with him when he was 13 months. Anybody could have one in three billion letters go off, but it doesn’t go off when they’re 13 months. It goes off 13 years or when they’re 40 or 60. And so, Robert really is advocating for everybody.

VALLAS: Elena, finishing with you, what is next for the Little Lobbyists? Health care is still very much under attack. Attacks on Medicaid aren’t going anywhere. The Affordable Care Act as well. What should we be looking for from the Little Lobbyists in the months ahead?

HUNG: So, I don’t know if you heard there’s an election next year in 2020. And so, we’ll be focusing on that. I think we made some great impact in the midterm elections. And the way we see it, we show up on Capitol Hill. We show up all across the country sharing our stories to elected officials, and that has been incredible. We’ll continue doing that. And we recognize that at a certain point, if we’re going to keep speaking up to the same people who are not listening, you know, we need to really get rid of those people and elect those who are listening to us and who will fight for our children. So, we’ll continue to tell stories, and we’ll be actively involved in the upcoming elections.

VALLAS: I’ve been speaking with Elena Hung the co-founder of Little Lobbyists. And also Roger Stone, the father of Robert, who is active with the Little Lobbyists as well, as you’ve heard. Thanks to you both for all the work that you do and for taking the time to come hang out with us on Radio Row.

ELENA HUNG: Thank you so much. Thanks for having us.

STONE: Thank you.

VALLAS: Don’t go away more. Off-Kilter after the break. I’m Rebecca Vallas.

[hip hop music break]

Welcome back to Off-Kilter. We are continuing our series of August conversations with interesting progressives doing interesting work on poverty and related issues. Let’s take a listen.

President Trump and Speaker Ryan claim their push for so-called work requirements is about helping people work. But as Kristen Arant, a mom from Kentucky and Ohio, writes for TalkPoverty, adding work requirements to Medicaid, as both of the states she hails from are seeking to do, could be nothing short of a death sentence for people like her. She came to D.C. this week to speak with members of Congress about what Medicaid has meant to her and how it’s turned her life around. And I’m so pleased to have her joining me in studio. Kristen, thank you so much for coming on the show.

KRISTEN ARANT: Thank you for having me. I’m so glad to be here.

VALLAS: So, Kristen, you credit Medicaid with turning your life around in a really significant way. How did that happen, and what has Medicaid meant to you?

ARANT: Absolutely. So, you know, my journey has not exactly been one that’s been easy. I was kind of born into my own struggle, and 32 years of living a life where you’re in constant need of therapy services for trauma that just never stops accumulating, health insurance can make or break you. Not to mention physical problems. And so, I kind of found myself at 26 years old just miserable emotionally and physically and honestly had a desire just to die. And I ended up turning to heroin to relieve my pain and my suffering. And towards the end, I was just living animalistically on a really subhuman level, and I was shooting about four grams of heroin into my arm a day. And I just looked like a skeleton. But you know, I was saved by the Department of Corrections, and I was given health care while I was incarcerated. And I came out with a whole new attitude and outlook on my life. I graduated from a program, and I learned all about my mental illness and my substance abuse disorders. And I learned how I would need health care to go along with my treatment, alongside recovery.

So, for me, coming out of prison health care was essential to my survival because I needed medications not just for my mental health but also for my physical body. Because I found out I was sick while I was incarcerated. And I waited for 10 absolutely miserable, painstaking months to get my health care. I applied three different times, and each rejection letter that I got was just like a slap in the face. And I wanted so badly just to rebuild and get back to work and go to school and do something with my life, but I knew I had to be healthy first. I couldn’t even walk out my front door without being afraid. So, waiting on my health insurance to come, it just got more and more miserable, and ultimately, I just I became willing to end my own life because I just could not get the help that I needed.

VALLAS: But finally, you were approved for Medicaid.

ARANT: Finally. And when that notice came, you know, it was a turning point for me. It was absolutely a turning point for me. And I called, and I made a therapy appointment that day because I had just been suicidal in the bathtub not 10 minutes ago before the mail showed up. And so, I kind of sat there and just made a deal with God or whatever it is that’s out there that if you’re going to help me, now’s the time. And then the doorbell rang. And now I’m here. And I was able to make that phone call and ask for the help that I needed. And I was able to get that help that I needed. And I really feel like I owe Medicaid my life, which is why I’m here talking to you today, to give back and give a voice to the people just like myself who are going to find themselves in similar situations if this continues.

VALLAS: Now you’re in a position where you’re finishing a bachelor’s degree in social work, which is what you want to do. You’ve been admitted to a master’s program to finish that work and to get an advanced degree in social work. Tell the rest of that story about how you got to that place now, which is a very different place from being in that bathtub as you were describing.

ARANT: Absolutely. So, I crawled out of the bathtub, and I made a phone call. And then I drove to a therapy appointment. And from there, I slowly began the rebuilding process from the ground up. I went to therapy, and I received medication. I was able to identify that I had been misdiagnosed as bipolar, and I was finally put on the right medicine. And I was able to concentrate. I was able to focus. I was able to go to class and listen to my lectures. I decided to get into social work because I had a social worker greatly impact my life, and she gave me the opportunity to learn about who I am as a person in that program in Kentucky Correctional Institute for Women. She took the time to teach me. So, now when I’m in class, I’m thinking about all of the different people that I will have the opportunity to share with, and just having the opportunity to do that for one person will make all of my education worthwhile.

And you know, working on that degree has been hard as a single mother. It’s been difficult being a caretaker for my son and having to provide his transportation to and from school and get myself to class, make sure that I’m paying all of my bills, paying for my rent. And taking care of all of those various things, it’s hard enough. And I can’t imagine having to live in a world where I have to fight for my ability to live as a human being based on my capability to work at a job.

VALLAS: Well, and let’s talk a little bit about that. So, one of the things that’s getting a lot of attention lately, but in particular this week because of the executive order that President Trump signed this week, essentially trying to redefine everything including Medicaid and many other programs as “welfare” and trying to pave the way for cuts to those programs. But one of the things getting a lot of attention in the course of all of that discussion and because of Trump’s executive order is the push by Republicans to condition receipt of Medicaid and other kinds of assistance on work: whether someone’s working a certain number of hours per week. What would that have meant for you if, when you were living in Kentucky or now in Ohio, both states that either have proposals for cutting Medicaid in this way or are currently trying to do it as we speak, what would that have meant if that kind of policy had been in place when you were trying to turn your life around?

ARANT: It would’ve been a death sentence, back to that garbage disposal of addiction that I lived in for so long is exactly what it would have been. When I came home, I had immediately to report to probation and parole. I had immediately to sign up for my random drug testing. I had to start paying fees. I had to go down once a week. I had to go to four 12 step meetings a week and get a signature for those. But the problem was I had no car. I had no money. I didn’t even have clothes that fit me anymore. I didn’t have anything. So, if those work requirements had been in place, I was living in a neighborhood where I had no access to public transportation, and there’s no way I would’ve been able to walk. Because it would’ve been like 20 miles for me just to get to a bus stop. So, if those work requirements had been in place, I don’t even know. I think I would probably be either strung out back on drugs or dead already. Because I just had so much on my plate as it was.

You know, in recovery you have a lot of work to do. You have a lot of internal work to do. It’s not as much about your exterior at the beginning as it is about getting the inside right so that you can get the outside right. And that’s hard enough. Having to go back and right your wrongs and look at your family and own what you did to them is hard enough. And then you’re in the process of the rebuilding and asking them to take you everywhere after you just ran through their lives for 10 years. And they’re willing to do it because they love me, but I hate having to ask it of them. I want to be able to take care of them for a while. I feel that I owe that to them, which is what I’m out here trying to be able to do. But it’s kind of hard to get a job when you’re a convicted felon. And when you need a job to be able to get around so that you can have money to pay for rides or to pay for gas or to have a car, to be able to participate in this society, it makes it a lot more difficult to rebuild your life. And I just don’t think that we should have to fight that hard just to live and exist. I don’t feel like that is right at all.

VALLAS: And you’re still helped by Medicaid today while you’re finishing school. You’re working part-time to put yourself through school. If those work requirements go into effect in Ohio where you’re currently living, that could still be a problem for you even today.

ARANT: Absolutely it could, and it terrifies me because I’m a person that I need my mental health services to be available to me 365 days a year. And my family needs that for me too. You know, my son depends on me fully. I’m his support system. And they depend on me to be emotionally well. I have a job that relies on me to be physically well. And I am also a person that experiences opioid addiction, so I can’t take pain medication when my back hurts. And I have chronic pain in my back. I need my Medicaid so that I can go meet with my fantastic spine doctor who takes such wonderful care of me and has helped me restore my wellness. If they take that from me, I don’t know. I have to walk across the campus twice a week to go back and forth to my classes so that I can come out with an education and degree and get involved in this society that expects me to participate at such a level. But it’s a level I’m not able to participate at even now as a full-time college student who’s giving back and working actively in recovery and sober this long. Still can’t do it because I have a felony on my record from 2011. It’s 2018. When does it stop? I don’t know. But these are the things we deal with out here.

VALLAS: Kristen, in the last minute or so that I have with you, what is your message to President Trump and to Congress and to policymakers in the state who are looking at these kinds of work requirement policies and talking about them as though they’re about helping people work?

ARANT: What I would say is that we are a nation of people who work for people like Donald Trump, and we are a nation of people who they rely very heavily upon for their workforce. And what I just cannot understand or wrap my head around is why they would not want every last one of us to be happy, healthy, and whole because we are putting the money ultimately in their pockets. And I don’t understand why a nation would not want to take care of the people that fuel its economy when its economy is struggling. I don’t understand that. People work harder, faster, longer, and stronger when they are happy, healthy, and whole. And I know that because I work happy and I work hard and I work long and I work strong because I’m whole and I’m healthy. If you take that away from me, I might not be able to do that. That would be my message.

VALLAS: Kristen, thank you so much for sharing your story and for advocating to protect Medicaid. We need more people like you out there bravely talking about what it means to them in personal ways like this. Thank you for coming on the show and for opening up.

ARANT: Thank you for inviting me. I had a wonderful time. Thanks for talking with me.

VALLAS: And that does it for this week’s episode of Off-Kilter, powered by the Center for American Progress Action Fund. I’m your host Rebecca Vallas. The show is produced by Will Urquhart and David Ballard. Find us on Facebook and Twitter @offkiltershow, and you can find us on the airwaves on the Progressive Voices Network and the We Act Radio Network or anytime as a podcast on iTunes. See you next week.

♪ I want freedom (freedom)

Freedom (freedom)

Now, I don’t know where it’s at

But it’s calling me back

I feel my spirit is revealing,

And now we just trynta get freedom (freedom)

What we talkin’ bout…. ♪