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National Disability Radio episodes

August 25Changing Laws Can Change Lives
This episode of National Disability Radio highlights a recent disability rights victory in Colorado, where advocates successfully worked to repeal a law that permitted the forced sterilization of people with disabilities. One of our very own P&As, Disability Justice in Colorado, was instrumental in making this happen! Hear from policy leaders and self-advocates behind the effort as they discuss coalition-building, and why disability rights progress depends on keeping people with disabilities at the center of the conversation.
**NOTE** Disability Law Colorado has recently rebranded to Disability Justice!
Check out their new messaging and branding on the web and across their socials:
Disability Justice’s Website: https://disabilityjustice.co/
Disability Justice’s Social Media Channels
Facebook: https://www.facebook.com/disabilityjustice
Instagram: https://www.instagram.com/disabilityjusticeco/
YouTube: https://www.youtube.com/@disabilityjusticeCO
The Arc of Colorado’s Website: https://www.thearcofco.org/
The Arc of Colorado’s Social Media Channels:
Facebook: https://www.facebook.com/TheArcofColorado
Instagram: https://www.instagram.com/arcofcolorado/
LinkedIn: https://www.linkedin.com/company/the-arc-of-colorado/
X (Twitter): https://x.com/thearcofco
YouTube: https://www.youtube.com/@TheArcofColorado
The Arc of the United States’ Website: https://thearc.org/
The Arc of the United States’ Social Media Channels
Facebook: https://www.facebook.com/thearcus/
Instagram: https://www.instagram.com/thearc_us/
LinkedIn: https://www.linkedin.com/company/thearcus/
YouTube: https://www.youtube.com/@thearc_us
Transcript:
Michelle Bishop:
Okay. Sorry, sorry. I can get serious. We can do this. Wait, are we recording?
Alden Blevins:
Yes.
Michelle Bishop:
Oh, okay.
Stephanie Flynt McEben:
Well, there's our cold open. Here we go.
Michelle Bishop:
Hi everyone, and welcome back to National Disability Radio, the official podcast of the National Disability Rights Network, where we share with you stories and conversations that advance the rights, voices, and leadership of people with [00:00:30] disabilities. I'm Michelle Bishop, one of your co-hosts, and today we are really excited to be joined by some of our own, two folks we were able to connect with through our own network of organizations across the US. We're going to be talking with Disability Law Colorado about some of the recent amazing advocacy work that they've been doing. But before we do that, I'm going to kick it to my co-hosts.
Stephanie Flynt McEben:
That's right. Hey, everybody. Stephanie Flynt McEben, public policy analyst with the National Disability Rights Network and two-thirds of [00:01:00] your podcast hosting team. But yeah, wanted to kick it off to our wonderful guests.
Jack Johnson:
Sure. Yeah, thank you for having me. So I'm Jack Johnson. I work at Disability Law Colorado as our public policy liaison, the one and only, so I'm a team of one here in Colorado, but am joined by a lot of great advocates in our network through our community partners, as well as all of the people that work at Disability Law Colorado who bring their lived experience to our policy [00:01:30] work and their expertise in their specific areas that they work in every day. And here in Colorado, we have a very busy legislative session and a very active legislature, which means we get to do a lot of fun work. And I get to work with Molly all the time, which I'm really grateful for, and I can pass it over to her.
Molly Kirkham:
Perfect. Well, yeah, thank you all. I'm Molly. I work for the Arc of Colorado as a legislative policy advocate, which basically means I get to talk to senators, [00:02:00] representatives, about bills and issues that matter to individual with disabilities. And aside from that, I'm also past president of SFO and vice president of Speaking for Ourself Colorado and People First. Speaking for Ourselves is a statewide group and People First is local. And I've always been connected to disabilities.
Stephanie Flynt McEben:
Awesome. Thank you so much, Molly. I'm going to pass on to Alden.
Alden Blevins:
[00:02:30] Yeah, I was just going to say I'm so glad that you're both here today. I think this type of legislative advocacy work is so important. I used to work at a P&A myself in Virginia, and back when I was doing their communications and kind of stressing the importance of the work, I kept coming back to the key phrase that changing laws can change lives. And I think that work like you guys have done on this bill that we're going to talk about today is something that could maybe be a blueprint for other P&As across the United States as they struggle with similar things [00:03:00] in their legislatures. So thank you so much for being here with us today.
Michelle Bishop:
Yes, we're excited to talk about this, especially anytime we get a chance to highlight some of the incredible work that's being done in our own network. That's our favorite thing to do. So first things first, let's get into it. For any of our listeners who might be unfamiliar, the big news is that Disability Law Colorado worked with their state legislature to get a new law passed that would end forced sterilization policies that are on the books. [00:03:30] Can you talk a little bit about what the law allowed and how long it was essentially on the books?
Jack Johnson:
Sure. Yeah. So as a little bit of a background, lots of states around the country have these laws. I think maybe a dozen or so have repealed them. Colorado now joins that list, but over 30 states still have these laws on the books, and it's unclear [00:04:00] how many states use them still. But the fact that they exist even here in Colorado has been a problem for us and something we've tried to solve. And so what the law did is it created a specific pathway for a court to order the sterilization of a person who has an intellectual or developmental disability over their objection. It was actually passed not that long ago, around the same time that the ADA was passed in the '90s and early 2000s, and amended [00:04:30] through that decade. But the reason it was passed is because before this, courts were just doing it, and it goes all the way back to our state hospital and practices of eugenics back in the 1920s all the way through to the end of the 1900s where there was different courts doing different things, but not a legal due process pathway.
And so when it was passed, it was supposed to be more progressive by adding [00:05:00] due process protections and adding things to the law that would prevent these sterilizations from happening without judicial intervention or without clear judicial direction. However, here we are in 2026 and the consensus is pretty clear that one's progressive policy now is very regressive because it still through statute authorizes eugenics-level sterilization for people over their objection.
Alden Blevins:
Yeah. It's wild [00:05:30] to think that it was passed that recently to me. And you kind of delved into this a little bit with your answer, but I mentioned earlier, I'm a woman with autism and I'm personally all too familiar with the rich history of eugenics that is unfortunately a part of America's story. So I just wanted to ask, how do you see this connecting to the broader history of how people with disabilities are treated in the United States? I know I have my own answer, but I wanted to see if you had any thoughts.
Jack Johnson:
Yeah, I [00:06:00] mean it's very interesting. This is the year 2026. Buck v. Bell was passed in 1927, so we're coming up on the hundredth anniversary of that Supreme Court decision and the decision that still could theoretically be used as precedence in future cases. And after a hundred years of advocacy, we have other protective laws like the ADA and other things, but [00:06:30] this is the last final piece, I think, in terms of our legal protections that needs to come into place. And it's a really problematic history, especially here in our specific state, in Colorado, where we have a single state hospital, which used to be a large institutional setting primarily for people who have intellectual or developmental disabilities or behavioral health disorders. It has since been transitioned in a way that is more clinically focused, but [00:07:00] the building itself remains and the practice itself remains at least a theoretical possibility in the law.
We've been as an investigative unit, as the P&A, obviously active in protecting people's rights. And there hasn't been a recent case, at least in the last 10 years where we've had to challenge one of these proceedings. But in an era now where other areas of disability rights are actually regressing, and we're seeing policies passed [00:07:30] that move us backwards, we took the opportunity to take that last step forward to pass this law.
Stephanie Flynt McEben:
Thank you so much, Jack. I really appreciate it. In talking a little bit about, obviously we both know this as public policy folks, but a lot of factors and things can come into play when trying to get a bill passed, let alone a bill signed into law. And so I was wondering if you could [00:08:00] talk a little bit about any political barriers, cultural barrier, any types of barriers that you might've encountered when advancing this piece of legislation? Because I can't imagine, as we all know, policy does not happen overnight. And so I'm sure that this has been a long time coming given the nature of public policy as well in general.
Jack Johnson:
Yeah. We have been fortunate that the bill passed, I think unanimously or close to unanimously, [00:08:30] through the vote chambers and got almost 100 votes of the legislators, but it wasn't easy. I think we started this project actually over a year ago during the 2025 General Assembly. And because of a lot of barriers to how slow things move in politics, as well as some of the policy questions related to this topic, it took us over a year just to get our appropriate bill drafted with sponsors in place [00:09:00] to run the legislation. And even as the legislation passed, I think there were especially folks who unfortunately, I think, still have the policy in mind that some level of eugenics is acceptable to them, that there was some outreach to the legislators and to us that this was the wrong direction to take and it would lead [00:09:30] to negative outcomes for people, which is surprising given the year that we're in, but maybe not all that surprising given some of the other areas of disability rights where we're seeing policies go backwards.
But in spite of that, I think we had people like Molly and other people speak for themself who have lived experience with a disability, who, given this law, could be sterilized over their objection. And so having them speak in both of our panels of public testimony [00:10:00] in the House and the Senate was really, really powerful to the legislators and I think helped convince them despite the outreach they were getting from other folks that this was the right policy to pass.
Alden Blevins:
Yeah, that leads us so nicely into the fact that I think having buy-in from the disability community is always helpful when it comes to the world of legislative advocacy, because ultimately people want to hear from their constituents. So that said, could you tell us a little bit more about how you [00:10:30] engaged advocates with disabilities to help support you guys? Or you said maybe they delivered some testimony when advancing this bill.
Jack Johnson:
Yeah, absolutely. So Colorado's legislative session I think is like most states in that we start in January and we go through the spring and we're time-limited to the middle of May, 120 days after we start. So that's kind of the cycle that we all work on to pass public policy objectives, which means that at the end of every May or the beginning of every June, [00:11:00] we meet as an organization, as a P&A, and we talk about what the next year's objectives are. And that includes from our survey that we put out into the community issues that people are facing, as well as barriers that our legal teams are seeing with laws that are not working appropriately or that need to be changed or repealed or protections added for people with disabilities.
And from there, we spend most of the summer meeting with all of our community partners. So all [00:11:30] of the organizations that represent and advocate for people with disabilities and who interact in this world. We have community round tables and do one-on-one meetings where we present what we think our priorities are going to be for the next year. We get input from our community partners and we hear what they're working on and what we can support them on as a collective. And from that round table, we usually come away with both our legislative priorities, but also our team's legislative priorities. [00:12:00] So everyone else who works in the legislature, who advocates here, we understand what every organization's doing and how we can partner with each other and support each other, and then testify in support of each other's legislation.
And so from those community meetings, there was a lot of excitement about this bill, and they're open to the public. So it's not just if you are a part of an organization, anyone with a disability is welcome to join. And we have email lists that people then can join onto if they want to learn about particular [00:12:30] pieces of legislation throughout the summer and the fall as we advance them. And when it comes time to testify, we just notify our partners and anyone on those email lists to come speak their voice. And we've been fortunate the last couple of years because of all this community-building that we've done, that when we run legislation or our partners run legislation, there's always great turnout in supporting the rights of people with disabilities. And especially here in Colorado, we have had great success the last three to five years [00:13:00] in really passing impactful legislation, and this is just another example of it.
Michelle Bishop:
Jack, just congrats to you and to everyone on the work that was done here. And I believe it when you say folks were excited about doing work on this bill, because the historical perspective is one of the things that's really interesting to me. When I talk to folks I know from outside disability rights world, I think this is one of those issues that people think is, "This is old, this is from the past. There's a problem that should be solved. [00:13:30] This is not an issue anymore." But it's not just Colorado. Antiquated laws like these seem to stay on the books. They stick around even when notions of how we approach disability have changed. And I'm wondering why you think laws like this seem to have such staying power even decades after society has, I'll say for the most part, rejected these kinds of ideas.
Jack Johnson:
Yeah, you're right. We see lots of laws, not just this one, that seem antiquated but still [00:14:00] remain on the books. And I think there's a lot of reasons why. The first reason is that many of these laws, it takes an act of a governing body to change the law, and legislators only have so much time in their day and so much effort to run legislation across all of their constituencies. And so taking time to pass a law that maybe seems antiquated and doesn't do anything requires people to step up and ask for it to be changed. [00:14:30] It requires us as the P&A to devote our resources to repealing it and our community partners to come testify and a legislator to spend 120 of their days in legislative session to advocate for its passage. And so the inertia of getting any law passed small or large is big.
And when you think about all of the different areas of disability rights that need attention, all the legal protections that need added or all the systems that need improved or all the old laws that need repealed, [00:15:00] sometimes it takes a lot to get all of those resources into place to repeal a law that may be old. But also there is a lot of institutional power that we take back in disability rights. And so institutions, the governments or state or local governments, large institutions related to healthcare or economic institutions, even [00:15:30] laws that they potentially don't use anymore doesn't mean that they would accept us removing them, taking them off the books, because that's taking away some of their perceived power. And so when you're looking at a government and we're asking it to give us more rights, give people with disabilities more rights and take away some of the power they have over people with disabilities, even if it's not power that they currently use, there is sometimes that institutional [00:16:00] resistance to allowing that change to occur. And so between those two things, sometimes it's hard to find a sweet spot where you can actually get something passed.
Alden Blevins:
Yeah, I think resistance to change is just something that we struggle with in general, but especially when it comes to those larger systems that you spoke so well about, it can really be hard to just change people's minds about the way something has always been done or the way [00:16:30] something has always been framed.
Stephanie Flynt McEben:
Oh, 1000%. Just talking about that, I think one of the things that really helps in terms of changing minds is really spotlighting the lived experiences of individuals with disabilities. And so with that, I do want to pivot our next question over to Molly. So Molly, I know that you have your own lived experience with disability, and I know that this topic is an incredibly heavy topic, [00:17:00] especially throughout the disability community. Do you remember how you felt when you first realized or learned about that a law like this was a thing or existed?
Molly Kirkham:
Yeah, I definitely can. For me, my first reaction I think was shock. Kind of like what you guys and Jack said, it's 2026, and I was shocked to hear that it's still happening and that it hasn't been. [00:17:30] Yeah, it's more of shock of, wow, we have so much progressed in thinking and how we value people with disabilities in the community, but it's still shocking to think that there's still stuff like for sterilization and that's still happening. And so to me, it's shock. And also that it's time that we address this. So, for real, shock and almost, not frustration, but just like, wow, how? And [00:18:00] almost like, yeah, because I wouldn't think that was still going on. So that shock of being like, okay, this is still happening, for me, I think it's more just [inaudible 00:18:16] 2026 and this is still going on. And I think that's how probably a lot of people feel, is the unknown too. It's like you don't know that's going on. So when you hear it, you're like, "Okay, let's do something about this."
Stephanie Flynt McEben:
Yeah, absolutely. And [00:18:30] I think that you hit a major point on the head, is a lot of people don't know what they don't know. And so I think that's a really huge point that hitting on is so important. And I definitely agree. It's 2026. You wouldn't think that laws like this would exist, or at least the average everyday person wouldn't think so, but you pull behind the curtain and this is what you see. I know that Alden has some lived experience that maybe she may be able to share too.
Alden Blevins:
[00:19:00] Yeah. So I was just going to say that as someone with my own lived experience with disability and my own trials and tribulations, especially with navigating some systems as a person with disabilities, I know that something that can be very hard for our community is trusting systems, especially the medical system, the healthcare system or the legal system. And I just wanted to ask you, Molly, how do you think that laws like these and their history affects [00:19:30] how our community trusts these systems?
Molly Kirkham:
Yeah. So I think now it does make you feel untrustworthy of it. And I think this goes back to the fact that you're not in charge of your own decisions. So to me, that's the big part, is not trusting the system to truly listen to you. Because a lot of times when you have disabilities, it feels like the legal system or doctors are deciding what's going [00:20:00] on or what's going to happen without you being present or being in control. So for me, part of trust is feeling like people listen and heard. So for me, a lot of times when in legal systems, if you have a disability, you feel like that you're not going to be heard. And that's I think what ruins the trust, is the fact that people with disabilities already [00:20:30] feel not in the majority, in the minority, and we're already a group that's not as included sometimes in discussions or decisions.
So for that, I think that's what it goes back to, is that when people with disability feel like they're not valued or people just don't make decisions, I think that blows the trust just in the fact that you don't know if they're going to make the decisions [00:21:00] in your best interest. Before the law came in, I think now that we do have this, I think it's building more trust back because you can tell that people want to listen, that they are changing the ways of having ... instead of other people decide, that they're giving the control and the decision back to the person with disabilities. So I think there's still lack of trust, but I think the more bills or the more legal systems and actual systems start [00:21:30] giving back that choice and the decision to people with disabilities, is going to build that trust back up.
Michelle Bishop:
Molly, I really feel that as we're talking about this, it seems like this is something that comes up again and again every time we talk about the healthcare system in the US, that is people with disabilities, we struggle to navigate the systems, we struggle to get our needs met. And I was wondering if y'all could talk about how disabled people's capacity to make decisions about their own bodies [00:22:00] gets questioned or even if are there other legal protections that exist or that need to exist to protect the bodily autonomy of people with disabilities in Colorado or beyond?
Molly Kirkham:
To answer that question, I think yes, we can always have more protections. I always say the more protections and the more protection for people with disability are always, to me, a plus. But to the [00:22:30] first question, which is, yeah, the decisions and their own bodies [inaudible 00:22:36], I think that again goes back to the fact that the judgment part, the preconceived notion is that when someone comes in with a disability, that they must not be able to make the decision. Or it's the same thing with doctors, is they can decide just because you have a disability, that means that you cannot [00:23:00] make your own decisions or that you don't have the capacity. And I think that goes back to the fact that disabilities, not able or not as able as someone else. So it goes back to that context of if there's someone with disability, that must mean that someone else has to make that decision for them.
And I think with doctors, it's the same as they're professional. And so they're going to say that because as a professional, that it feels like they sometimes [00:23:30] have maybe more knowledge. And a lot of times when someone with disabilities, a lot of people assume that they need someone else to do it, that they are not going to be able to make that decision to give consent. And I think it comes back to, again, that preconceived assumption that someone with a disability is not able [00:24:00] to understand, that they're not able to really actually make that decision. And I think that goes back a long time for many areas. So doctors, teachers, one of them, but I know we're always trying to work on this, is support decision-making, guardianship. I think for me, this is a big one as first sterilization of course is a big one since it really [inaudible 00:24:30] [00:24:30] I can't imagine not being able to decide.
But I think it goes to almost a lot of stuff. So to me, it's anything that can impact a person with disability rights is something that needs to be protected, whether that's [inaudible 00:24:46], whether it's health insurance, whether that's job. But I think a lot of times one thing that would need to change for that is getting rid of that preconceived notion that people with disabilities are not [00:25:00] able to do stuff and trying to get to the point of supporting them and giving them that opportunity to take some control back of decisions that truly affect them.
Stephanie Flynt McEben:
1000%. Absolutely. And I think that a lot of that is based on perceptions and misconceptions. People don't realize or expect [00:25:30] that disabled people or people with disabilities can make various decisions for themselves. Obviously, these are some really, really heavy topics. And so I did want to lean a little bit into a little bit more of a positive framework here and really just personally ask, what does it mean for you personally that this law has passed?
Molly Kirkham:
Yeah. What does it mean personally to me to see that change? [00:26:00] I think, to me, it's hope. It's the idea that there are people even now through tough times that are willing to stand up and say, "This is not right," and fix it. And to me, again, it's going back to seeing that people with disabilities are valued, that they do matter. Going back to personalization, to me, it feels very hopeful and comforting to know [00:26:30] that there is a law now that does say that people with disabilities still have the right to [inaudible 00:26:38], that they have the right for them to be in control of their lives and make decisions. And again, the repeal of the law, to me, it means that we're taking a step forward. That we are saying that people with disabilities should have that decision, that they are the ones who can decide [00:27:00] what happens to them and what is not going to happen.
When I think about this bill, I think about how far we already have come from the history of people with disability being sterilized and now coming to the place that we're saying, "No, that's not right." And that this is not how people with disabilities are going to be treated. To me, that is really very comforting [00:27:30] to know that the people are going to stand up, that even laws like this can be changed and that people can do what I think is the right thing even if it's a lot. Even if there's a lot of people pushing against it, that there is always going to be at least, that people are going to support the disability and that they want ... And that's a change in perspective from people with disability not being able to say what they [00:28:00] want to do to now being the ones in charge of what goes on. So I think at the end of the day, it's just about seeing, even if things are tough, seeing the progress that's going on, even if it's little.
Alden Blevins:
I love what you said about both hope and progress. For me, it's inspiring both to look backwards and think about the things that some of our ancestors in the disability community had to live through and that they were able to get through [00:28:30] that not even that long ago. But it's also inspiring to look forward and think about all of the progress we can make and how far things have come in terms of changing attitudes and really supporting the capacity and the competency of people with disabilities to make decisions about their own lives. So I love the message of hope because I think it gives me some hope too.
Michelle Bishop:
I think that's true, Alden. And not to be a huge bummer, but [00:29:00] as we've been having this conversation, I've been wondering for Jack or for Molly, we've talked a lot about the history here. Do you think it's dangerous to assume that this could never happen again?
Jack Johnson:
I'll jump in here. That's one of the reasons we wanted to repeal the law. What we saw was a friendly legislature and an opportunity. Even though we've heard that this procedure has not been used recently, we very much feel that given everything happening in the world right now, it's not [00:29:30] unrealistic that someone could use this law to justify doing this again or expanding involuntary sterilization the way it is right now. And so it wasn't just a symbolic repeal of something that doesn't happen anymore. I think it really is an important repeal to protect people with disabilities as many areas of government move to look to restrict rights even further.
Stephanie Flynt McEben:
Thank you so much. [00:30:00] I really appreciate that insight there. Are there any other takeaways throughout the legislative process of getting this done that you think might be informative for other states to engage in their own advocacy?
Jack Johnson:
Yeah, I think one of the powerful things that we looked at that really started this process was a 50-state study done by a national women's health organization that looked at [00:30:30] forced sterilization laws across the country and also examined state by state using citations where those laws exist in the statute and how they may interact or interplay with other areas of law. And that was a really powerful study because it's persuasive to the legislators who are looking at what other states have done, but it's also a great starting point because it points you directly to what your state is doing in terms of forced sterilization in their statute, where it belongs in the statute, and [00:31:00] an easy point to just say, "We need to repeal this thing right here."
Alden Blevins:
And I love that you said that you leaned on that study from the national women's health perspective, because I think that that so well illustrates a topic for my last question, which is just, do you have any additional advice about how to bridge gaps or build coalitions with other organizations so that we can collaborate as a larger disability community to [00:31:30] make things like this happen?
Jack Johnson:
Yeah. Well, I definitely encourage folks to reach out to every other organization that works in those spaces in the state or in neighboring states. I think we've had a lot of success with that, building power in our movement by collaborating with other disability-focused organizations or adjacent organizations that advocate for kids, advocate for healthcare patients, advocate for justice-involved folks, [00:32:00] because all of those organizations have an impact and their advocacy helps us just as much as we help them. And those type of movements have really given us not just us standing alone, but us standing in community with a lot of lived experience, not just from the disability perspective, on the policies and their impacts on people.
And then the other thing is we try very diligently to keep a lot of our policy meetings open so that anyone can participate. And I think that gives us a [00:32:30] lot of buy-in, not just for people with lived experience, but for other organizations who may not want to participate or may not be able to participate now, but who want to follow along in our process and who may, given the right bill or the right opportunity, jump in and be a great supporter that we have. And so I know there's a lot of strategy that goes involved in lawmaking, but we always try to just leave our meetings open with invites that are public, and that has given us a lot of success in terms of buy-in and voices [00:33:00] of people with disabilities leading the way.
Michelle Bishop:
Thank you both so, so much for joining us today. This has been really an incredible conversation, and thank you both so much for your work and your leadership. I'm glad we can share this with the rest of our network. I know Stephanie has some info for our listeners. And Molly and Jack, I fear that you're also about to find out about Stephanie's gift for joke telling.
Stephanie Flynt McEben:
My gift? Oh my goodness. Yeah, no, seriously. Thank you all so much for being [00:33:30] a part of this conversation, 1000%. For any of our listeners who are interested in keeping up with everything that's going on, you can follow Disability Law Colorado on their website, which we'll have linked in the show notes as well as their social media channels. But I also want to give Jack and Molly an opportunity to shout out anything else that they might want to plug in terms of following.
Jack Johnson:
I think Disability Law Colorado's webpages and our social [00:34:00] media is the best place, but Molly is the rockstar. She's on the local news in the evenings when they interview people with lived experience. So she's definitely the one that you want to follow.
Stephanie Flynt McEben:
Oh my gosh. Molly, do you want to plug your social media and then we can also put it in the notes?
Molly Kirkham:
Yeah, I'll be happy to. So I would say for mine, I do have a Facebook page. Yeah, it's just Molly Kirkham. There's two of them. So it's Molly Kirkham and it's the one that's having [00:34:30] me with the running. But I'd say in terms of social media in terms of legislative, the Arc of Colorado Facebook page, website, and the Arc of the United States page, I would always recommend. If you reach out to them, they can help you in many ways. So for social media, that's it. And then the last thing that I think Jeff might know this is in terms of speaking up and speaking out is to remember [00:35:00] to not take no as a solid answer. That's a step toward a yes. And for me, the most important thing to remember is to look at everyone as a person. And I think that's my main message in any of this, legislative, doctor, whatever, social media, is just remembering that this is a person that is going to be affected. I think that's my big takeaway. If people can look at each other as humans, that goes the farthest.
Stephanie Flynt McEben:
[00:35:30] Absolutely. Absolutely. And then Michelle, aren't you going to ask me your favorite question of the episode?
Michelle Bishop:
I was hoping Alden was just going to wrap us, but okay, Jack and Molly, we have this weird tradition on our podcast where Stephanie has gotten into the habit of telling a joke. And if you don't know this about Stephanie, she tells really terrible dad jokes. So Stephanie, do you have a joke for the people this time?
Stephanie Flynt McEben:
I actually don't.
Michelle Bishop:
What? There's no joke.
Stephanie Flynt McEben:
I know. The [00:36:00] thing is, I was going to try to make a joke about employment, but it just wasn't working.
Michelle Bishop:
Oh.
Alden Blevins:
My God. Stephanie.
Michelle Bishop:
Stephanie, actually, you got me with that one. I'm not going to lie.
Stephanie Flynt McEben:
I was honestly ready for your reaction to me not having a joke because I was like, I always have a joke.
Michelle Bishop:
You always ... Honestly, I don't know why I believed you when you said you didn't have one ready. And I think you got a chuckle out of Jack actually.
Stephanie Flynt McEben:
[00:36:30] Yay. Oh my gosh. We love our little jokester crew. Oh my gosh.
Michelle Bishop:
Thank you both for coming on today, for everything you taught us today. It was amazing. And for dealing with our terrible, terrible jokes. Alden, tell the people everything they need to know.
Alden Blevins:
Yes. Again, we're so grateful we've been able to collect and learn more from you both. This has been National Disability Radio, where we dive into tough topics and the elbow grease it takes [00:37:00] to make change happen. If you enjoyed this episode, be sure to subscribe, share, and continue the conversation with us at ndrn.org or anywhere you get your favorite podcasts. Thanks for listening. And until next time, let's keep working together to create a world where all people with disabilities can thrive.
Stephanie Flynt McEben:
Bye.
38 min
July 28 Public Policy Pod: Putting the FUN in funding
Video Version:
What does it actually mean when disability advocacy is “level funded”?
What are federal appropriations, and why are they such a big deal for disability rights?
On this episode of National Disability Radio, Alden Blevins (Communications Manager), Stephanie Flynt McEben (Public Policy Analyst), and Eric Buehlmann (Deputy Director for Public Policy) pull back the curtain on the federal funding process and what it means for the Protection and Advocacy (P&A) network. They discuss the successful FY26 funding fight, why advocacy on Capitol Hill matters, and how everyday people can help. You also get the added bonus of hill-day survival tips, advocacy myths and truths, and a very important debate about coffee and tea.
Transcript:
Alden Blevins: Hello, and welcome to National Disability Radio. I am here today with two wonderful people who are about to introduce themselves. I am Alden Blevins, Communications Manager here at NDRN. I have my own lived experience with disability and I’m really glad to be here today. What about you guys? Who are you, What do you do?
Stephanie Flynt…: Yeah, I’m Stephanie Flynt McEben. I am also one of your hosts of the podcast and NDRN’s Public Policy Analyst. And I have beef with a music streaming app, and I’m not going to talk about which one, but let’s just say that this [00:00:30] music streaming app told me that I was 67 for Christmas this year. And then it had the audacity to… Oh gosh, what was the playlist the other morning that was recommended? It was Old Camping Man Sunday Morning, and it was really weird. Why? I don’t listen to old camping man music unless James Taylor and Chappell Roan and Taylor Swift count as that. But anyway, hope everybody else is having a good day. And hey, if Spotify thinks [00:01:00] you’re old, you’re just… I don’t know. You’re young at heart, anyway.
Alden Blevins: I think it clocked my age exactly. And I must say that I listened to a lot of Lady Gaga and Kesha in the last year.
Stephanie Flynt…: Yes.
Alden Blevins: And to be fair-
Stephanie Flynt…: You were in the 2010’s era.
Alden Blevins: They were still the two most popular artists when I was graduating from high school, so they clocked me. They clocked me for sure.
Stephanie Flynt…: Oh my gosh. Time to introduce Eric, who is our Deputy Executive [00:01:30] Director for Public Policy. How are you doing? It’s great for you to be here.
Eric Buehlmann: Great, it’s wonderful to be here. Evidently, your phone must be listening to my music then in that way [inaudible 00:01:44]
Stephanie Flynt…: Maybe so. I don’t know what’s going on, but I don’t know how I feel about it. And also, I guess… I don’t know. I guess the Spotify age thing is eclectic because my top artist was Taylor Swift, so I don’t know. Anywho.
Eric Buehlmann: So I’m Eric Buehlmann. I’m the Deputy Executive [00:02:00] Director for Public Policy. As Stephanie said, my first choice is not Taylor Swift, but my wife listens to it a lot. So when I’m in the car with her, that’s what I’m listening to.
Alden Blevins: This is National Disability Radio. We are the official podcast of the National Disability Rights Network. The National Disability Rights Network works in Washington DC and around the country on behalf of the protection [00:02:30] and advocacy systems, the P&As and the client assistance programs or CAP. We are the nation’s largest provider of legal advocacy services for people with disabilities. The first thing we want to talk about is some big and good news. The P&A network was funded for the rest of FY26. Can we get a hallelujah?
Stephanie Flynt…: Yay, woo-hoo!
Alden Blevins: The first thing I was just going to ask is, Eric, can you explain to us why it’s a big deal that we were funded and level funded, [00:03:00] and kind of what it took for us to get to this point?
Eric Buehlmann: In terms of being able to, why we were able to do this, it’s really our members reaching out to all the representatives, all the senators, making the case, all the good work that the P&As and the CAPs do, and showing all the examples and saying, “Look, if you don’t fund us, this is what’s going to happen, is that person with a disability is not going to be able to get accessible housing or accessible transportation, or the student’s going to be able to go to school or someone’s going to have an assistive [00:03:30] technology device or rampant abuse and neglect are going to be occurring in either the community or institution.” So they made those cases. Congress said, “We agree with you.” And the best we could hope for at this time was at least maintaining our funding and not losing it.
Alden Blevins: I think it’s really important to remember that this is not just numbers on a spreadsheet, this has real world impacts on peoples’ lives, the lives of people with disabilities, whether or not they can access enforcement of their civil rights, so [00:04:00] super important.
Stephanie Flynt…: Absolutely.
Alden Blevins: Just to peel back the curtain and give a little more context for some of our listeners, I just want to go ahead and ask the kind of general question of what are federal appropriations and what does that really mean when we talk about them?
Stephanie Flynt…: Yeah, sure. I’m happy to jump in a little bit here. Essentially what federal appropriations are is how Congress allocates funding. And so essentially, there is a long process as Eric kind of talked through a little bit [00:04:30] earlier, in terms of everything that’s been going on with the budget. And so individuals are able to make various appropriations requests to their office. But essentially in a nutshell, it’s essentially just how we get the funds that we need in order to do the work that we do.
Alden Blevins: And just kind of practically, what are the steps in an appropriations process or what can people kind of expect out of appropriation season? Oh
Stephanie Flynt…: Oh my goodness. Okay, so usually, [00:05:00] of course in the spring, we usually see a big influx of appropriations forms, which, we’re starting to kind of see that now with the House setting their committee deadlines for appropriations, so we’re starting to kind of see an influx of that now. In the Senate, we’ll probably see that a little bit later on as that comes down. But usually the offices will set their personal deadlines, their committee deadlines.
And then the appropriations bills, just kind of depending on where they sit, which, all of ours sit on the subcommittee for Labor, [00:05:30] Health and Human Services, Education and related agencies on both the House and the Senate side on the Appropriations Committee. And so there will be a House markup usually around June, as well as a Senate markup in July with the hope that we are able to go ahead and pass the appropriations, the funding that we need for the next fiscal year that starts on October 1st.
Alden Blevins: My next one is just why do you guys think advocacy on Capitol Hill matters [00:06:00] during appropriation season? The regular person might not realize how important this is and why.
Stephanie Flynt…: Yeah. In my experience, like you said, Alden, a lot of people don’t realize how important and how crucial that kind of advocacy is. But really and truly, that kind of advocacy is what helps us acquire our funding for services, particularly advocacy. So it’s definitely super important to be continuing to follow up with your members. Of course, meeting with your members if you can, [00:06:30] and their staff. Having a steady contact in their offices, things like that. And even just building those relationships in my viewpoint is a good form of advocacy and just making sure that they know who you are, they know what your programs do. They know how it benefits folks in their state/district, et cetera, et cetera, the constituency that they serve. So just making sure that, those points.
Eric Buehlmann: And the specific, the biggest requirement is staff [00:07:00] are always seeking information. You’re covering hundreds of programs, multiple issues. They don’t know everything that is going on. They can’t track everything at the same time because they just have information overload. So putting a face with a person, with the story, with the request in front of them makes the biggest difference, because then the staff begins to know who you are. But otherwise, they’re just overloaded with how much material they’re trying to cover and how much stuff they’re trying to do. And if you’re not in front of them, I mean, as [00:07:30] it’s basically said, if you’re not talking to them, you’re on the menu, you’re not the one that’s providing them the information.
Stephanie Flynt…: You’re not at the table, you’re on the menu, yeah.
Alden Blevins: That makes a lot of sense to me. I was also just going to ask, we’re all so excited and grateful that we were level funded for FY26, but what does level funding really mean? What has that looked like over the last couple years? And having that level or that stagnant funding, what does that mean in terms of the [00:08:00] P&A’s services or the take home impact?
Eric Buehlmann: It’s difficult for the P&As because level funding really is in a way, a kind of a cut. Costs are going up continually, healthcare costs are going up. Cost of travel, cost of everything is going up. So level funding ultimately means that they’re able to do less or they may need to shift from doing as much individual case work to more systemic work where you’re helping multiple people by solving one problem. [00:08:30] So level funding is great, especially when you’re facing the potential of cuts. But ultimately if you do that for many, many years, it ultimately means that the P&As and the CAPs will have less staff and able to serve less people.
Alden Blevins: Now that we’ve kind of grounded ourselves in a little bit of how this process works, we’re going to talk about the larger policy landscape that we’re all living in right now. What are some of the disability policy concerns we saw come to a head in 2025 and how do we think [00:09:00] that might influence our policy landscape for the rest of 2026?
Stephanie Flynt…: Oh my goodness. Do you want to start or do you want me to?
Eric Buehlmann: You go first.
Stephanie Flynt…: Oh, goodness. I think for me, the biggest thing that comes to mind is the dismantling of the Department of Education. We’ve definitely seen different things that have kind of gone ahead in that regard. And so obviously, there’s a lot of different concerns that are there in those types of things. And so [00:09:30] just continuing to monitor that and what all of that looks like. Of course, I’ll leave a little bit of the healthcare stuff to Eric since that’s more of his specialty, but of course, that is something that I would be remiss not to mention.
The various concerns around the Medicaid work requirements that will be taking effect and how that’s going to impact our community. So there are definitely a lot of different policies and a lot of different things that you don’t think about necessarily intersecting with [00:10:00] the disability community, but that are still having impacts on the disability community, particularly those who are members of multiple marginalized communities.
Eric Buehlmann: I think building on that for Stephanie is, it’s not just the Medicaid work requirements that are going to hit people. It’s just the massive amounts of cuts to the amount of funding that the states are getting. It’s sort of a partnership between states and the federal government. And if the federal government cuts their share of funding, it means states are going to be cutting their share of funding. And what those cuts [00:10:30] really mean in the long run is that unfortunately, not required services or waiver services are going to be the ones that are going to get hit. If they have to do it, the state will pay for it. If they don’t have to do it and the state’s not willing to put up the money, then those services are going to go away. And in our case, that means home and community-based services for the most part.
So not only are a number of people going to get kicked off of Medicaid because they’re having problems following the work requirements or understanding [00:11:00] what the work requirements are and/or having to go through getting re-certified every six months rather than every year, that’s going to mean more people are going to be kicked off. On top of it, you add in all the cuts and the states are going to look around and say, “Well, we’re losing $1 billion,” let’s say, in California, I think is the number they said. “How are we going to make up that gap?” And what they’re going to do is they’re going to say, “Well, these are required and required in the Medicaid program is institutionalized care versus [00:11:30] the ones that we choose to do on our own, which is home and community-based services. Well, if we have to do it, we’ll have to pay for it.” And that means there’s a gap and that gap is going to come out of home and community-based services.
Alden Blevins: Yeah. And I think this is kind of a great connection to that home and community-based services piece. I was going to kind of ask, generally speaking, what themes might we be seeing in Congress right now that could affect P&A programs or disability justice as a whole?
Eric Buehlmann: I do think one issue [00:12:00] that we’re encountering is more and more members that may not understand disability as well, or what the desires of people with disabilities are, and may listen to not just the person with a disability, they may be listening to their guardians or they may be listening to their parents. Not saying that they don’t know what the person with a disability wants, but if you want to go to the source, the source is the person with a disability.
So I think one of the themes, and I think this is why it’s critically important for people with disabilities to be involved in these discussions and [00:12:30] doing this advocacy, is you’ve got to put yourself front and center. And you have to say, “This is what I desire, this is what I want. I want to live in the community, I want to live at home. I want to be able to work in an integrated environment. I don’t want to be paid subminimum wage.” And if they’re not hearing from people with disabilities about that, then that’s a problem.
And I think what we’re seeing is sort of a return to sort of the old way of thinking, sort of pre-IDEA, pre-ADA. And people with disabilities should be [00:13:00] off to the side and not at the forefront. And so I think that theme is carrying over in a lot of the ways Congress and the administration are looking at these issues. And I think in terms of other themes, it’s, “We got to save money somewhere.” And their ideas of trying to save money is to cut programs, which actually in the long run, costs more. It costs more to be served in an institution than it costs to live and get served in the community. And [00:13:30] so we’ve really got to be making those cases. I think those are two themes that I’m thinking of.
Stephanie Flynt…: Yeah, for sure. And I think that another theme really is just broader justice in the civil rights community, just not completely and fully understanding disability. And so I definitely think that if we’re not careful with everything going on, we definitely could regress back a little bit more into the medical model as opposed to the social model. And I think that some of the demonstration in the legislation [00:14:00] that could potentially be introduced, and of course that we are closely monitoring and making sure that we’re continually keeping an eye out. And of course, we’ll keep folks in the network apprised of those things. But all that to say, I think that’s kind of a demonstrated action when it comes to their understanding of what disability is.
Alden Blevins: I love what you guys said, especially about people with disabilities being front and center and telling their own stories and determining, [00:14:30] telling the world what they really want and seek out in their lives. I think that that’s so important for people with disabilities to be in the driver’s seat. For those of you who don’t know, we do have a saying in the disability community that is, “Nothing about us without us.” So kind of speaking about some of the messages that have been happening in the last year, we know that a lot of things have become very polarized throughout the last year, 2025. What opportunities do you guys see for collaboration towards [00:15:00] a better future for people with disabilities? What efforts might be a good target for bipartisan support?
Stephanie Flynt…: Yeah. I think for me, definitely always on the hunt for bipartisan opportunity. Because the truth of the matter is that disability, even though it is being portrayed as a partisan issue, it’s not a partisan issue. It’s a nonpartisan issue. And so just kind of keeping that in mind as we continue to do this policy work. I think [00:15:30] what it boils down to really, at least a part of it, is messaging.
Because looking at the issues that are in the disability community, because they’re nonpartisan, I think that really, it comes down to it’s not about what you’re saying, it’s how you’re saying, it’s how you’re presenting it. When we’re talking to different offices, we want to emphasize different things that they are most concerned about or that may matter most to their particular constituency or the folks [00:16:00] with disabilities that they may serve. Those would be my things, but I definitely, even though it can be challenging at times, definitely just continuing to keep hope there.
Eric Buehlmann: I mean, there’s always a lot of different things. And as Stephanie said, you have to sort of tailor your message around what people are interested in. I mean, things like the Transformation to Competitive Integrated Employment Act, I think there’s a large number of people, and we’ve seen it in the states, they’re phasing out the subminimum wage, even in some [00:16:30] very conservative states. And so that’s something that’s garnered bipartisan support, that people should be paid at least the minimum wage for the work they’re doing. And that they should be integrated into the employment environment and not just in segregated workshops.
We were able to get a Republican co-sponsor for the Keeping All Students Safe Act this year, which would place some kind of federal restrictions on the use of restraint and seclusion in schools and provide money for [00:17:00] training, which is critically important so that the teachers know and the school personnel know what they do when they’re encountering tough situations. There’s a number of bills. I mean, ultimately disability is very bipartisan and it impacts everybody. So usually whether you’re a Republican, a Democrat or Independent, you either have a family member or know someone very close to you that has a disability. So you just got to frame the message right.
Alden Blevins: I love that you guys both mentioned messaging and disability [00:17:30] being affecting everyone. That’s part of my core messaging that I always try to put out there, is that disability can come for anybody. You can be a person who has no disabilities one morning and your situation could be different by that evening, depending on what happens to you in your life.
And even as you age throughout the lifespan, most of us are going to experience some degree of disability in our lives. So advocating for this [00:18:00] community now when you have the chance to is only going to benefit you when you inevitably become a part of it. I think that’s really important to remember. My kind of last question on this topic is just, what do you think you would want policymakers today to know most about our programs at the P&As?
Stephanie Flynt…: I’m going to yield to the executive overseer to start.
Eric Buehlmann: I mean, I think our members are hidden gems. I think that’s the biggest [00:18:30] thing, is that most people don’t know what a protection advocacy agency is and/or what it does. As I’ve said many times in my stories is I had met the Executive Director of the Vermont P&A for many times when I worked up on the Hill. Had no idea he worked for the Protection & Advocacy Agency. Talked to him about housing, talked to him about employment, talked to him about all these different things, had no idea that there was a Protection and Advocacy Agency. My second day at the job, I go into an NDRN board meeting and there he is, [00:19:00] sitting there. And I’m like, “Oh, that’s what a Protection & Advocacy Agency… Because I didn’t have a clue. So I think we’re sort of a hidden gem. And I think really, the big thing is that the P&As do a lot of work that other agencies can’t.
We have these really strong… I hate saying we, but our members have strong authorities to go in and investigate and monitor for abuse and neglect. If that’s going on, they can go in unannounced. They could do these kinds of investigations that other places can’t. There are [00:19:30] story after story of the police being kept out of certain places or Child Protective Services or Adult Protective Services. But the P&A goes in and is able to sort of expose that abuse and neglect. And that’s really the important thing. And I think people just need to know they exist. But there’s more than just the systemic work. Individually, they are helping people around employment or education or accessible transportation and housing.
So I just think there are ultimately hidden gems the more [00:20:00] you delve into it. And as you said, Alden, everyone’s going to become, in my opinion, a member of the disability community at one time in their life or not. Could be permanently, could be temporarily if you break your leg or something like that. And now all of a sudden, you begin to realize that yeah, curb cuts do make a heck of a lot of sense. And yes, automatic doors are very helpful and all those kinds of things. And so we just need to do a better job of sort of explaining the beauty of the work the P&As do and that [00:20:30] it’s not just these giant exposes of abuse and neglect, but there’s all the little individual work that they do that’s extremely important to families and people with disabilities.
Alden Blevins: We know in this world that policy is never static. There’s always a lot coming at us, coming at you guys, to kind of figure out and think about how it impacts our community. So my next question is just what do we think might be coming in the landscape of 2026? [00:21:00] It’s hard to speculate, but what should we be looking ahead towards as a community?
Eric Buehlmann: Election years are always a weird little duck.
Stephanie Flynt…: Yes.
Eric Buehlmann: Partly because Congress does not stay around that much, they like to go home and they like to campaign. Some would say they’re not here to do as much damage. But the administration’s still here, they could do plenty of damage. And so I mean, my expectation is there will not be [00:21:30] a lot that’s going to really occur. They’re going to do what they normally have to do, which is sort of the appropriations and try to get that done as well as they can before the elections. There may be some messaging bills that they try to work on, but I’m not expecting a lot of things to actually get passed and a lot of work to get done.
But I think this gets back to the theme issue and that kind of discussion, which is you need to be laying the foundation for the members that are here now and those that are running, especially [00:22:00] in someone in a seat where a member’s retiring or if there’s an open seat. And you need to be making sure the candidates understand the needs and desires and wishes of people with disabilities so that when they do come here, they already have at least some based foundation. So I would really look at ’26 as you got to focus on funding because that’s going to have to happen no matter what. And then making sure that your candidates and then making sure that your members of Congress understand about disabilities so that when [00:22:30] they come back next year, that they’re really almost ready to get going on the issues of importance.
Stephanie Flynt…: Yeah.
Alden Blevins: So much of what we do is kind of playing a little bit of defense about whatever is going on in the larger policy landscape or the news cycle of that week. But we obviously also have our own policy priorities that we would like to see and that we would like movement on in the next year. So I was just going to ask, what are NDRN’s top three [00:23:00] public policy priorities?
Eric Buehlmann: I think if you’re looking in the proactive world, that’s tough in this day and age. I think our policy priorities tend to be much more in the defensive world now, Which is, there’s sort of a 1A and a 1B. You always have the money aspect of it, the appropriations aspect of it, and making sure that our members have hopefully increased funding, but at least level funding. The second, as I talked about before, is our members have amazingly strong authorities [00:23:30] to sort of ferret out abuse, neglect, fraud and waste. And we got to make sure that those aren’t reduced. And so that’s sort of the other big thing.
I think structurally, we’re looking at the administration and saying, “We need to make sure that disability is still centered here.” The Department of Education is extremely important for students with disabilities and the amount of work they do. And around employment because the vocational rehabilitation system is there. Health and Human [00:24:00] Services impacts people with disabilities in huge, humongous ways. And so we got to make sure that those structures stay strong, that are providing the training, the technical assistance, the support to all the different programs that support people with disabilities and that they’re strong.
Alden Blevins: Yeah, absolutely. I heard education, I heard healthcare. I think these are all bread and butter issues for us and for the community at large. [00:24:30] It can just be tricky to decide when and where to focus your attention.
Stephanie Flynt…: Right. And also too, again, going back to that, how do we mesh the priorities in a way that we could potentially try to work with folks and get stuff done? And I think that that’s kind of where that point of collaboration comes in. Figuring out what the priorities of various offices are and see, how can we kind of mesh ours together? Where’s the common ground? What can we work together [00:25:00] on in order to make things better for disabled folks?
Eric Buehlmann: And I think as Stephanie said, this is where these relationships come into effect, because you have no idea what’s going to be the big issue of the day. Today it may be X, tomorrow it’s going to be Y. The day after it’s going to be Z, and the staff are just overwhelmed a little bit. But if you have those relationships with them, if something comes up and you need to get in touch with them, you shoot them that email, you send them that note [00:25:30] and they know who you are and they’re willing to look and listen to figure out what you’re saying and where it needs to fit in their priorities.
They don’t know who you are, this gets back to the, if you’re not at the table, you’re on the menu, then they’re not going to understand why this is a problem because you’ve not laid that foundation. So that’s where those relationships come to be critically important, because you just never know what’s going to pop up.
Alden Blevins: My next question is, what are kind of the strategies or things that [00:26:00] everyday folks can do to kind of help or support? There’s a lot of overwhelming information coming at folks on all sides. And it would just be really nice if we could know what would be most helpful in terms of getting that community support to advance our priorities.
Stephanie Flynt…: I think for me, the biggest thing that I can think of there is just making sure that your voice is being heard and that you are able to kind of amplify your voice when it comes to these issues. [00:26:30] Making sure that you are reaching out to your senators and representative, things of that nature. Of course, there’s the number for the Capitol switchboard and we can certainly put that in the show notes if that’s helpful to people.
But for everyday folks, it’s so interesting. I’ll be on Facebook and I’ll just see different things and it’ll be videos of people just calling their senators and representative. And it sounds scary, it sounds daunting, but I promise you, getting [00:27:00] constituent calls is definitely something that is super, super helpful in terms of advocacy there. So definitely, definitely recommend that.
Eric Buehlmann: And as Stephanie said, take advantage of those action alerts, take advantage of those days. If you’re looking at your state and local legislatures, a lot of them have disability days where a number of groups will come together and they’ll go to the Capitol and they’ll talk up their issues. Take advantage of those. In terms of the federal, try to keep track of if they’re going to do a town hall or if they’re going to be having a [00:27:30] get together. And go and have a discussion with the staff and the members that are there. And then when it comes to the campaigns, get involved with the campaigns.
Make sure that the candidates have some kind of disability platform as part of their work and what they’re doing. Because ultimately if you’ve, I’m going to say trained, trained them ahead of time, then when they come to Congress or they go into the state legislature, you don’t have to explain as much. You’re not having to spend your time explaining why this issue is important. [00:28:00] You get to jump to, “This is why we need to do this.” So you need to be working at those candidates. You need to be looking at their platforms and you need to be talking to them so that they know that you’re there.
Alden Blevins: Absolutely. I think a lot of times people feel overwhelmed with just knowing how or why to help. And I love that you even mentioned people posting their calls onto social media, because I think that’s another avenue that folks can use. Talk to your friends, talk to your neighbors, talk to people that you talk with online about how these issues impact you [00:28:30] and your life personally. I think that hearing those stories from people with disabilities can be really impactful as well. All right, I’ve got some quicker round of questions just to kind of help folks get to know both you guys and your work.
Stephanie Flynt…: Yay.
Alden Blevins: The first one is just almost similar to two truths and a lie. If you could give me one myth and one truth about federal advocacy, what would you say?
Eric Buehlmann: I think it’s sort of the flip side of the same coin. To me, [00:29:00] the myth that’s out there is, “My voice doesn’t matter.” And that, “Whatever I say isn’t going to be heard by the staff, isn’t going to be heard by the member and I’m not going to really have an impact.” It does. Again, as I said early on, staff are constantly looking for those sources of information. They cannot keep track of all the topics they cover, all the bills they have to do, all the differing appropriations they’re following. They can’t. They rely on the constituents to provide them information. And if you are a trusted resource and providing them good information, [00:29:30] you’ve got your in and they’ll understand and they’ll follow what you’re asking them to do as best they can.
So I think that’s the myth, is that their voice doesn’t make any difference. To me, the flip side of that is the truth is it does make a difference. And so if you’re not engaged, then you’re automatically losing. The disability community needs to be and put itself front and center. Because as Alden said, people with disabilities are a majority of this country. You will eventually be a member [00:30:00] of the disability community. And so therefore, you need to make sure your voice is heard. And so I think the truth is your voice does matter, the myth is people think that it doesn’t.
Stephanie Flynt…: I think for me, a myth that I would say, not as interesting as Eric’s, but I think a myth that I would say, and these are probably for people who are kind of newer or just more on the outskirts of things, is that a bill is going to pass overnight. That’s not how policy works. Usually it takes lots of reiterations of introduction [00:30:30] and stuff, but that’s how it’s designed. And so I think that’s kind of where my truth comes in or where the truth comes in for the myth versus truth, is that policy is designed to take a while, even though it can be frustrating at times, but that’s in order to ensure the appropriate checks and balances and whatnot. So no, you’re not going to enter in and pass a bill in two days. Hate to break into any hopefuls, but you know.
Eric Buehlmann: No, that is a huge one. People think that policy moves at a lightning quick pace. [00:31:00] It is a snail.
Stephanie Flynt…: Yep.
Eric Buehlmann: It takes years. I worked eight years on election reform before we were finally able to get it through Congress. And reauthorizations, I mean, this is one of our smaller ones. The Assistive Technology Act program was last reauthorized in 2004. We finally got the next reauthorization done in 2021. So it moves slowly and you have got… I guess that’s another thing, sort of following up on what you’re saying. The truth is you have to stick to these people.
Stephanie Flynt…: Yes.
Eric Buehlmann: You can’t just say, ” [00:31:30] I talked about this once and it’s going to get done this year.” No, you’re probably back next year.
Stephanie Flynt…: Not how it works.
Eric Buehlmann: And you’re probably back the next Congress and you’re probably back the next Congress. So you will repeatedly have the same conversations.
Stephanie Flynt…: Yes. Especially with staff turnover, too. There are going to be different staff members, folks may move back to the representative or the senator’s districts or their own home districts or change roles, what have you. But there can sometimes be a lot of that [00:32:00] turnover. But that can also be a good thing, too.
Eric Buehlmann: But Stephanie, I think we’ve got another good truth and myth.
Stephanie Flynt…: Oh, okay.
Eric Buehlmann: Which is, the myth in my mind is if I feel like the member’s not supportive or following what I’m talking about and caring about disability, then it’s not worth my time. The truth is staff do a lot of work.
Stephanie Flynt…: Yes.
Eric Buehlmann: And you may encounter a member that is not really [00:32:30] interested in disability, doesn’t really care about disability, but the staff is very interested in disability. And so your message can get conveyed from the staff to the member. You may not always get everything exactly the way you wanted from the member, but you’ve moved him in a direction, or her, in a direction that they weren’t going to go without the staff.
Stephanie Flynt…: Exactly, exactly. Staff definitely have a lot of influence when it comes to different member priorities and things like that, that might not usually be on their [00:33:00] radar, such as disability.
Alden Blevins: Actually, I caught Eric saying something yesterday that I thought was so impactful. Somebody was expressing disappointment that their meeting was with a baby staffer. And I heard Eric say, “That baby staffer could be in charge in 10 years.”
Stephanie Flynt…: I was going to say, like a Chief of Staff in five years-
Alden Blevins: Yeah, you never know what inroads you’re making when you get into those rooms. And you should take the chance once you’re in that room, to make the case for people with disabilities.
Stephanie Flynt…: Yes.
Alden Blevins: This next one, I’m [00:33:30] hearing a lot of themes of perseverance, maybe having to stay on people, having to return year-to-year. This is just a silly question, but what is your Hill day fuel of choice? Is it coffee, is it tea? What keeps you going?
Stephanie Flynt…: I think that mine is probably either, probably Celsius. And then I don’t know if y’all have ever had the Mary’s Gone Crackers, but I like to have little hummus things with me. And so I’ll do the Mary’s Gone Crackers with some hummus on the Hill. And so that’s really good to eat between [00:34:00] meetings and stuff, but they’re really good. They’re quinoa seed crackers, gluten-free, garlicky, basil. I don’t know, they’re really good, especially with hummus. So I guess for me, that’s my food and caffeine.
Eric Buehlmann: And Stephanie no doubt, could tell any of everybody what mine is.
Stephanie Flynt…: Anything gluten-free/unsweetened iced tea from McDonald’s.
Eric Buehlmann: Yep, bingo. I’ve never had coffee in my life.
Alden Blevins: Wow.
Eric Buehlmann: Yeah, I’ve never had coffee in my life.
Stephanie Flynt…: I thought you would at least-
Eric Buehlmann: Nope, never had coffee in my life.
Alden Blevins: Just not even curious?
Stephanie Flynt…: Not a sip?
Eric Buehlmann: I’m curious, [00:34:30] but I’ve never had it. I’ve now reached the age of, “Why should I now start?”
Alden Blevins: This is so fair, because once you start, it’s hard to stop.
Stephanie Flynt…: You’re not going to be able stop.
Alden Blevins: It’s real hard to stop.
Stephanie Flynt…: Especially when you find a roast that you really like.
Eric Buehlmann: I’m a caffeine addict, don’t get me wrong. For many years it was Dr. Pepper, Diet Coke.
Stephanie Flynt…: Diet Coke.
Eric Buehlmann: Doctor said, “No.” Now I’m an unsweetened tea… Well, I’m not going to say always unsweetened tea, but it’s always usually some form of iced tea.
Alden Blevins: [00:35:00] Yeah. And sometimes you sneak in the sweet tea as a treat, I assume?
Eric Buehlmann: No, not really. I’m not a big fan of sweet tea. I find it too sweet.
Alden Blevins: Wow.
Stephanie Flynt…: You have to have the right sweet tea, though.
Eric Buehlmann: Yeah, I’m not from the South.
Stephanie Flynt…: I was going to say-
Eric Buehlmann: I’m in Virginia, but I’m not the South.
Stephanie Flynt…: They don’t make good sweet tea up in the DMV if you want good sweet. Actually, they just started carrying Milo’s at my local grocery store, so that’s what I recommend.
Eric Buehlmann: I’ve seen Milos. Milos is good?
Stephanie Flynt…: I love Milos, yes.
Eric Buehlmann: Okay, I’ll have to get that one.
Stephanie Flynt…: So good, yeah. I mean, it’s sweet, but it’s not too sweet. Anyway.
Eric Buehlmann: See, I find it too sweet. I’ll [00:35:30] mix it with unsweetened iced tea at times. I grew my tea at home. And what I’ll do is I’ll pour a little lemon iced tea in and sort of mix it, but I find it too sweet. But yeah, I’ve never had coffee in my life. Coffee ice cream once or twice, but never-
Stephanie Flynt…: Okay, but that’s really good.
Eric Buehlmann: Nah, no.
Stephanie Flynt…: No?
Eric Buehlmann: No. Coffee smells great. I love the smell of coffee, but I’m not going to try it now if I can avoid it.
Alden Blevins: Good for you. My next one [00:36:00] is just, what is your go-to story when speaking with folks on The Hill? Do you have a P&A story that you feel like you come back to? Do you speak about issues more generally or do you have a go-to story in your back pocket?
Eric Buehlmann: Well, I mean, I think the one I always fall back on is the Kaufman House in Kansas. There was a place in Kansas. I think if you just Google Kaufman House in Kansas, you’ll find it. Basically, this is one of those examples where the P&A was the only one that got in. These [00:36:30] were a husband and wife that were running a, I guess I’d call it a group home, that were doing unspeakably horrible abuse and neglect of people with mental illness. And the state had been called in a number of times, the local people had been called in a number of times, and they just shut the door on them. The P&A went in and exposed the whole thing, basically showing what was going on there.
They got convicted of a number of crimes, they were sent away to jail. To me, that’s the example that I will go [00:37:00] to a lot, is without the P&A, these people would’ve been just still going through abuse and neglect. I mean, I think the P&As are creating stories every single day, honestly. The number of reports that come out from P&As, we just got one from the Maryland… Maryland, wrong M. Minnesota P&A, about the use of seclusion with some amazing pictures of the various seclusion rooms in Minnesota that they had come upon.
I think they’re occurring every single day and all these reports that are coming out. [00:37:30] Our members are in all sorts of facilities, just exposing abuse and neglect. Unfortunately, some of the stuff we really can’t talk about is they’re exposing the waste, fraud and abuse that’s occurring at times in the representative payee program because people aren’t using the benefits to the benefit of people with disabilities, to the beneficiaries. But the one, if you were going to ask me the one, it would be the Kaufman House. And Nancy Jensen testified [00:38:00] in front of Congress on the importance of the P&A program. She’s written some books on the issues that arose, but that would be the one go-to.
Stephanie Flynt…: Yeah. I think for me personally, it really just varies from office to office and various priorities. I will say that one thing I do try to do before meeting with particular offices is I try to reach out to the P&A, just to see if there are any particular stories or any particular things that I should highlight going [00:38:30] on in their state for their senators or representative, or even if there’s anything specific in their district. Eric brought up the report that Minnesota did on restraint and seclusion. And one thing that staffers love is data.
So if you’re able to kind of bring in a visual, say like the report or even send in a report of what’s been going on along with a story, along with data, that’s really going to get you far. And so those are things that I really [00:39:00] try to bring, just tangible stuff that they can take back to their higher ups in order to try to get different things up the chain, in order for us to get the support that we’re wanting to get from that particular office, whether the goal is co-sponsoring a particular bill or sponsoring something, or whether the goal is just general support or flagging something. Just making sure that you have those materials that folks can take back.
Alden Blevins: Yeah, absolutely. And I [00:39:30] think what Eric said about the network generating stories all of the time, every day.
Stephanie Flynt…: Yes.
Alden Blevins: Where I sit, working in communications, is I try to share a story. At least every week, there’s a new, new story coming out about something that a P&A is doing, whether it be work related to abuse and neglect, whether it be work related to some states, they’re already talking about the Medicaid waiver programs and how they can apply some systemic advocacy to ensure that those are protected through the changes [00:40:00] coming in the Medicaid landscape. There’s just always something to be aware of that’s going on. And I think that really harnessing all of those stories together presents a really strong case for what our network is able to do.
Stephanie Flynt…: Absolutely.
Alden Blevins: Yeah. I’ve been told that maybe you’ll have a Hill day or appropriations pun and/or joke?
Stephanie Flynt…: I always have a joke, you know this.
Alden Blevins: Okay, so?
Stephanie Flynt…: Oh my goodness.
Alden Blevins: Let’s get a drum roll.
Stephanie Flynt…: Yes. All right, [00:40:30] so it’s more of a question for Eric.
Eric Buehlmann: Oh, no.
Stephanie Flynt…: Are you ready?
Eric Buehlmann: No, because we did not test this out beforehand.
Stephanie Flynt…: Sorry, okay. How would you describe the appropriations process?
Eric Buehlmann: How?
Stephanie Flynt…: It’s fund.
Alden Blevins: So much fun-d.
Stephanie Flynt…: So much fun.
Alden Blevins: So much fund.
Stephanie Flynt…: Oh my goodness.
Alden Blevins: Incredible.
Stephanie Flynt…: But yes, that is my joke of the month. I’ll be here next month, assuming that I’m not kicked off the podcast [00:41:00] yet. Sorry, Michelle, you weren’t here for the joke, but I’m sure you’re actually laughing even though you pretend you don’t like them.
Alden Blevins: Michelle is groaning from afar.
Stephanie Flynt…: Yes.
Alden Blevins: Yes.
Eric Buehlmann: Stephanie’s puns get us through the day.
Stephanie Flynt…: Yes, they do. See, I knew there was a… Yep, there we go.
Alden Blevins: You got to laugh, you got to laugh.
Stephanie Flynt…: Yes, exactly. Laughing is the best form of self-care when it comes to this kind of work, that’s for sure.
Alden Blevins: Absolutely. It’s important to remember that congressional budgets and federal decision [00:41:30] making say a lot about whose rights are protected and whose are not, what voices are included, what voices are not. And I’m very grateful that I got the chance today to sit down with two of my amazing coworkers and hear more of their voices, get to share more about the amazing work that they do for our larger community. This has been National Disability Radio, where we highlight issues that impact people with disabilities. If you enjoyed this episode, be sure to subscribe and continue the [00:42:00] conversation at ndrn.org or anywhere you get your favorite podcasts. Thanks for listening. Until next time, let’s keep working together to create a world where people with disabilities can thrive.
Stephanie Flynt…: Bye.
43 min
July 24 Public Policy Pod: Putting the FUN in funding
What does it actually mean when disability advocacy is “level funded”?
What are federal appropriations, and why are they such a big deal for disability rights?
On this episode of National Disability Radio, Alden Blevins (Communications Manager), Stephanie Flynt McEben (Public Policy Analyst), and Eric Buehlmann (Deputy Director for Public Policy) pull back the curtain on the federal funding process and what it means for the Protection and Advocacy (P&A) network. They discuss the successful FY26 funding fight, why advocacy on Capitol Hill matters, and how everyday people can help. You also get the added bonus of hill-day survival tips, advocacy myths and truths, and a very important debate about coffee and tea.
Transcript:
Alden Blevins: Hello, and welcome to National Disability Radio. I am here today with two wonderful people who are about to introduce themselves. I am Alden Blevins, Communications Manager here at NDRN. I have my own lived experience with disability and I’m really glad to be here today. What about you guys? Who are you, What do you do?
Stephanie Flynt…: Yeah, I’m Stephanie Flynt McEben. I am also one of your hosts of the podcast and NDRN’s Public Policy Analyst. And I have beef with a music streaming app, and I’m not going to talk about which one, but let’s just say that this [00:00:30] music streaming app told me that I was 67 for Christmas this year. And then it had the audacity to… Oh gosh, what was the playlist the other morning that was recommended? It was Old Camping Man Sunday Morning, and it was really weird. Why? I don’t listen to old camping man music unless James Taylor and Chappell Roan and Taylor Swift count as that. But anyway, hope everybody else is having a good day. And hey, if Spotify thinks [00:01:00] you’re old, you’re just… I don’t know. You’re young at heart, anyway.
Alden Blevins: I think it clocked my age exactly. And I must say that I listened to a lot of Lady Gaga and Kesha in the last year.
Stephanie Flynt…: Yes.
Alden Blevins: And to be fair-
Stephanie Flynt…: You were in the 2010’s era.
Alden Blevins: They were still the two most popular artists when I was graduating from high school, so they clocked me. They clocked me for sure.
Stephanie Flynt…: Oh my gosh. Time to introduce Eric, who is our Deputy Executive [00:01:30] Director for Public Policy. How are you doing? It’s great for you to be here.
Eric Buehlmann: Great, it’s wonderful to be here. Evidently, your phone must be listening to my music then in that way [inaudible 00:01:44]
Stephanie Flynt…: Maybe so. I don’t know what’s going on, but I don’t know how I feel about it. And also, I guess… I don’t know. I guess the Spotify age thing is eclectic because my top artist was Taylor Swift, so I don’t know. Anywho.
Eric Buehlmann: So I’m Eric Buehlmann. I’m the Deputy Executive [00:02:00] Director for Public Policy. As Stephanie said, my first choice is not Taylor Swift, but my wife listens to it a lot. So when I’m in the car with her, that’s what I’m listening to.
Alden Blevins: This is National Disability Radio. We are the official podcast of the National Disability Rights Network. The National Disability Rights Network works in Washington DC and around the country on behalf of the protection [00:02:30] and advocacy systems, the P&As and the client assistance programs or CAP. We are the nation’s largest provider of legal advocacy services for people with disabilities. The first thing we want to talk about is some big and good news. The P&A network was funded for the rest of FY26. Can we get a hallelujah?
Stephanie Flynt…: Yay, woo-hoo!
Alden Blevins: The first thing I was just going to ask is, Eric, can you explain to us why it’s a big deal that we were funded and level funded, [00:03:00] and kind of what it took for us to get to this point?
Eric Buehlmann: In terms of being able to, why we were able to do this, it’s really our members reaching out to all the representatives, all the senators, making the case, all the good work that the P&As and the CAPs do, and showing all the examples and saying, “Look, if you don’t fund us, this is what’s going to happen, is that person with a disability is not going to be able to get accessible housing or accessible transportation, or the student’s going to be able to go to school or someone’s going to have an assistive [00:03:30] technology device or rampant abuse and neglect are going to be occurring in either the community or institution.” So they made those cases. Congress said, “We agree with you.” And the best we could hope for at this time was at least maintaining our funding and not losing it.
Alden Blevins: I think it’s really important to remember that this is not just numbers on a spreadsheet, this has real world impacts on peoples’ lives, the lives of people with disabilities, whether or not they can access enforcement of their civil rights, so [00:04:00] super important.
Stephanie Flynt…: Absolutely.
Alden Blevins: Just to peel back the curtain and give a little more context for some of our listeners, I just want to go ahead and ask the kind of general question of what are federal appropriations and what does that really mean when we talk about them?
Stephanie Flynt…: Yeah, sure. I’m happy to jump in a little bit here. Essentially what federal appropriations are is how Congress allocates funding. And so essentially, there is a long process as Eric kind of talked through a little bit [00:04:30] earlier, in terms of everything that’s been going on with the budget. And so individuals are able to make various appropriations requests to their office. But essentially in a nutshell, it’s essentially just how we get the funds that we need in order to do the work that we do.
Alden Blevins: And just kind of practically, what are the steps in an appropriations process or what can people kind of expect out of appropriation season? Oh
Stephanie Flynt…: Oh my goodness. Okay, so usually, [00:05:00] of course in the spring, we usually see a big influx of appropriations forms, which, we’re starting to kind of see that now with the House setting their committee deadlines for appropriations, so we’re starting to kind of see an influx of that now. In the Senate, we’ll probably see that a little bit later on as that comes down. But usually the offices will set their personal deadlines, their committee deadlines.
And then the appropriations bills, just kind of depending on where they sit, which, all of ours sit on the subcommittee for Labor, [00:05:30] Health and Human Services, Education and related agencies on both the House and the Senate side on the Appropriations Committee. And so there will be a House markup usually around June, as well as a Senate markup in July with the hope that we are able to go ahead and pass the appropriations, the funding that we need for the next fiscal year that starts on October 1st.
Alden Blevins: My next one is just why do you guys think advocacy on Capitol Hill matters [00:06:00] during appropriation season? The regular person might not realize how important this is and why.
Stephanie Flynt…: Yeah. In my experience, like you said, Alden, a lot of people don’t realize how important and how crucial that kind of advocacy is. But really and truly, that kind of advocacy is what helps us acquire our funding for services, particularly advocacy. So it’s definitely super important to be continuing to follow up with your members. Of course, meeting with your members if you can, [00:06:30] and their staff. Having a steady contact in their offices, things like that. And even just building those relationships in my viewpoint is a good form of advocacy and just making sure that they know who you are, they know what your programs do. They know how it benefits folks in their state/district, et cetera, et cetera, the constituency that they serve. So just making sure that, those points.
Eric Buehlmann: And the specific, the biggest requirement is staff [00:07:00] are always seeking information. You’re covering hundreds of programs, multiple issues. They don’t know everything that is going on. They can’t track everything at the same time because they just have information overload. So putting a face with a person, with the story, with the request in front of them makes the biggest difference, because then the staff begins to know who you are. But otherwise, they’re just overloaded with how much material they’re trying to cover and how much stuff they’re trying to do. And if you’re not in front of them, I mean, as [00:07:30] it’s basically said, if you’re not talking to them, you’re on the menu, you’re not the one that’s providing them the information.
Stephanie Flynt…: You’re not at the table, you’re on the menu, yeah.
Alden Blevins: That makes a lot of sense to me. I was also just going to ask, we’re all so excited and grateful that we were level funded for FY26, but what does level funding really mean? What has that looked like over the last couple years? And having that level or that stagnant funding, what does that mean in terms of the [00:08:00] P&A’s services or the take home impact?
Eric Buehlmann: It’s difficult for the P&As because level funding really is in a way, a kind of a cut. Costs are going up continually, healthcare costs are going up. Cost of travel, cost of everything is going up. So level funding ultimately means that they’re able to do less or they may need to shift from doing as much individual case work to more systemic work where you’re helping multiple people by solving one problem. [00:08:30] So level funding is great, especially when you’re facing the potential of cuts. But ultimately if you do that for many, many years, it ultimately means that the P&As and the CAPs will have less staff and able to serve less people.
Alden Blevins: Now that we’ve kind of grounded ourselves in a little bit of how this process works, we’re going to talk about the larger policy landscape that we’re all living in right now. What are some of the disability policy concerns we saw come to a head in 2025 and how do we think [00:09:00] that might influence our policy landscape for the rest of 2026?
Stephanie Flynt…: Oh my goodness. Do you want to start or do you want me to?
Eric Buehlmann: You go first.
Stephanie Flynt…: Oh, goodness. I think for me, the biggest thing that comes to mind is the dismantling of the Department of Education. We’ve definitely seen different things that have kind of gone ahead in that regard. And so obviously, there’s a lot of different concerns that are there in those types of things. And so [00:09:30] just continuing to monitor that and what all of that looks like. Of course, I’ll leave a little bit of the healthcare stuff to Eric since that’s more of his specialty, but of course, that is something that I would be remiss not to mention.
The various concerns around the Medicaid work requirements that will be taking effect and how that’s going to impact our community. So there are definitely a lot of different policies and a lot of different things that you don’t think about necessarily intersecting with [00:10:00] the disability community, but that are still having impacts on the disability community, particularly those who are members of multiple marginalized communities.
Eric Buehlmann: I think building on that for Stephanie is, it’s not just the Medicaid work requirements that are going to hit people. It’s just the massive amounts of cuts to the amount of funding that the states are getting. It’s sort of a partnership between states and the federal government. And if the federal government cuts their share of funding, it means states are going to be cutting their share of funding. And what those cuts [00:10:30] really mean in the long run is that unfortunately, not required services or waiver services are going to be the ones that are going to get hit. If they have to do it, the state will pay for it. If they don’t have to do it and the state’s not willing to put up the money, then those services are going to go away. And in our case, that means home and community-based services for the most part.
So not only are a number of people going to get kicked off of Medicaid because they’re having problems following the work requirements or understanding [00:11:00] what the work requirements are and/or having to go through getting re-certified every six months rather than every year, that’s going to mean more people are going to be kicked off. On top of it, you add in all the cuts and the states are going to look around and say, “Well, we’re losing $1 billion,” let’s say, in California, I think is the number they said. “How are we going to make up that gap?” And what they’re going to do is they’re going to say, “Well, these are required and required in the Medicaid program is institutionalized care versus [00:11:30] the ones that we choose to do on our own, which is home and community-based services. Well, if we have to do it, we’ll have to pay for it.” And that means there’s a gap and that gap is going to come out of home and community-based services.
Alden Blevins: Yeah. And I think this is kind of a great connection to that home and community-based services piece. I was going to kind of ask, generally speaking, what themes might we be seeing in Congress right now that could affect P&A programs or disability justice as a whole?
Eric Buehlmann: I do think one issue [00:12:00] that we’re encountering is more and more members that may not understand disability as well, or what the desires of people with disabilities are, and may listen to not just the person with a disability, they may be listening to their guardians or they may be listening to their parents. Not saying that they don’t know what the person with a disability wants, but if you want to go to the source, the source is the person with a disability.
So I think one of the themes, and I think this is why it’s critically important for people with disabilities to be involved in these discussions and [00:12:30] doing this advocacy, is you’ve got to put yourself front and center. And you have to say, “This is what I desire, this is what I want. I want to live in the community, I want to live at home. I want to be able to work in an integrated environment. I don’t want to be paid subminimum wage.” And if they’re not hearing from people with disabilities about that, then that’s a problem.
And I think what we’re seeing is sort of a return to sort of the old way of thinking, sort of pre-IDEA, pre-ADA. And people with disabilities should be [00:13:00] off to the side and not at the forefront. And so I think that theme is carrying over in a lot of the ways Congress and the administration are looking at these issues. And I think in terms of other themes, it’s, “We got to save money somewhere.” And their ideas of trying to save money is to cut programs, which actually in the long run, costs more. It costs more to be served in an institution than it costs to live and get served in the community. And [00:13:30] so we’ve really got to be making those cases. I think those are two themes that I’m thinking of.
Stephanie Flynt…: Yeah, for sure. And I think that another theme really is just broader justice in the civil rights community, just not completely and fully understanding disability. And so I definitely think that if we’re not careful with everything going on, we definitely could regress back a little bit more into the medical model as opposed to the social model. And I think that some of the demonstration in the legislation [00:14:00] that could potentially be introduced, and of course that we are closely monitoring and making sure that we’re continually keeping an eye out. And of course, we’ll keep folks in the network apprised of those things. But all that to say, I think that’s kind of a demonstrated action when it comes to their understanding of what disability is.
Alden Blevins: I love what you guys said, especially about people with disabilities being front and center and telling their own stories and determining, [00:14:30] telling the world what they really want and seek out in their lives. I think that that’s so important for people with disabilities to be in the driver’s seat. For those of you who don’t know, we do have a saying in the disability community that is, “Nothing about us without us.” So kind of speaking about some of the messages that have been happening in the last year, we know that a lot of things have become very polarized throughout the last year, 2025. What opportunities do you guys see for collaboration towards [00:15:00] a better future for people with disabilities? What efforts might be a good target for bipartisan support?
Stephanie Flynt…: Yeah. I think for me, definitely always on the hunt for bipartisan opportunity. Because the truth of the matter is that disability, even though it is being portrayed as a partisan issue, it’s not a partisan issue. It’s a nonpartisan issue. And so just kind of keeping that in mind as we continue to do this policy work. I think [00:15:30] what it boils down to really, at least a part of it, is messaging.
Because looking at the issues that are in the disability community, because they’re nonpartisan, I think that really, it comes down to it’s not about what you’re saying, it’s how you’re saying, it’s how you’re presenting it. When we’re talking to different offices, we want to emphasize different things that they are most concerned about or that may matter most to their particular constituency or the folks [00:16:00] with disabilities that they may serve. Those would be my things, but I definitely, even though it can be challenging at times, definitely just continuing to keep hope there.
Eric Buehlmann: I mean, there’s always a lot of different things. And as Stephanie said, you have to sort of tailor your message around what people are interested in. I mean, things like the Transformation to Competitive Integrated Employment Act, I think there’s a large number of people, and we’ve seen it in the states, they’re phasing out the subminimum wage, even in some [00:16:30] very conservative states. And so that’s something that’s garnered bipartisan support, that people should be paid at least the minimum wage for the work they’re doing. And that they should be integrated into the employment environment and not just in segregated workshops.
We were able to get a Republican co-sponsor for the Keeping All Students Safe Act this year, which would place some kind of federal restrictions on the use of restraint and seclusion in schools and provide money for [00:17:00] training, which is critically important so that the teachers know and the school personnel know what they do when they’re encountering tough situations. There’s a number of bills. I mean, ultimately disability is very bipartisan and it impacts everybody. So usually whether you’re a Republican, a Democrat or Independent, you either have a family member or know someone very close to you that has a disability. So you just got to frame the message right.
Alden Blevins: I love that you guys both mentioned messaging and disability [00:17:30] being affecting everyone. That’s part of my core messaging that I always try to put out there, is that disability can come for anybody. You can be a person who has no disabilities one morning and your situation could be different by that evening, depending on what happens to you in your life.
And even as you age throughout the lifespan, most of us are going to experience some degree of disability in our lives. So advocating for this [00:18:00] community now when you have the chance to is only going to benefit you when you inevitably become a part of it. I think that’s really important to remember. My kind of last question on this topic is just, what do you think you would want policymakers today to know most about our programs at the P&As?
Stephanie Flynt…: I’m going to yield to the executive overseer to start.
Eric Buehlmann: I mean, I think our members are hidden gems. I think that’s the biggest [00:18:30] thing, is that most people don’t know what a protection advocacy agency is and/or what it does. As I’ve said many times in my stories is I had met the Executive Director of the Vermont P&A for many times when I worked up on the Hill. Had no idea he worked for the Protection & Advocacy Agency. Talked to him about housing, talked to him about employment, talked to him about all these different things, had no idea that there was a Protection and Advocacy Agency. My second day at the job, I go into an NDRN board meeting and there he is, [00:19:00] sitting there. And I’m like, “Oh, that’s what a Protection & Advocacy Agency… Because I didn’t have a clue. So I think we’re sort of a hidden gem. And I think really, the big thing is that the P&As do a lot of work that other agencies can’t.
We have these really strong… I hate saying we, but our members have strong authorities to go in and investigate and monitor for abuse and neglect. If that’s going on, they can go in unannounced. They could do these kinds of investigations that other places can’t. There are [00:19:30] story after story of the police being kept out of certain places or Child Protective Services or Adult Protective Services. But the P&A goes in and is able to sort of expose that abuse and neglect. And that’s really the important thing. And I think people just need to know they exist. But there’s more than just the systemic work. Individually, they are helping people around employment or education or accessible transportation and housing.
So I just think there are ultimately hidden gems the more [00:20:00] you delve into it. And as you said, Alden, everyone’s going to become, in my opinion, a member of the disability community at one time in their life or not. Could be permanently, could be temporarily if you break your leg or something like that. And now all of a sudden, you begin to realize that yeah, curb cuts do make a heck of a lot of sense. And yes, automatic doors are very helpful and all those kinds of things. And so we just need to do a better job of sort of explaining the beauty of the work the P&As do and that [00:20:30] it’s not just these giant exposes of abuse and neglect, but there’s all the little individual work that they do that’s extremely important to families and people with disabilities.
Alden Blevins: We know in this world that policy is never static. There’s always a lot coming at us, coming at you guys, to kind of figure out and think about how it impacts our community. So my next question is just what do we think might be coming in the landscape of 2026? [00:21:00] It’s hard to speculate, but what should we be looking ahead towards as a community?
Eric Buehlmann: Election years are always a weird little duck.
Stephanie Flynt…: Yes.
Eric Buehlmann: Partly because Congress does not stay around that much, they like to go home and they like to campaign. Some would say they’re not here to do as much damage. But the administration’s still here, they could do plenty of damage. And so I mean, my expectation is there will not be [00:21:30] a lot that’s going to really occur. They’re going to do what they normally have to do, which is sort of the appropriations and try to get that done as well as they can before the elections. There may be some messaging bills that they try to work on, but I’m not expecting a lot of things to actually get passed and a lot of work to get done.
But I think this gets back to the theme issue and that kind of discussion, which is you need to be laying the foundation for the members that are here now and those that are running, especially [00:22:00] in someone in a seat where a member’s retiring or if there’s an open seat. And you need to be making sure the candidates understand the needs and desires and wishes of people with disabilities so that when they do come here, they already have at least some based foundation. So I would really look at ’26 as you got to focus on funding because that’s going to have to happen no matter what. And then making sure that your candidates and then making sure that your members of Congress understand about disabilities so that when [00:22:30] they come back next year, that they’re really almost ready to get going on the issues of importance.
Stephanie Flynt…: Yeah.
Alden Blevins: So much of what we do is kind of playing a little bit of defense about whatever is going on in the larger policy landscape or the news cycle of that week. But we obviously also have our own policy priorities that we would like to see and that we would like movement on in the next year. So I was just going to ask, what are NDRN’s top three [00:23:00] public policy priorities?
Eric Buehlmann: I think if you’re looking in the proactive world, that’s tough in this day and age. I think our policy priorities tend to be much more in the defensive world now, Which is, there’s sort of a 1A and a 1B. You always have the money aspect of it, the appropriations aspect of it, and making sure that our members have hopefully increased funding, but at least level funding. The second, as I talked about before, is our members have amazingly strong authorities [00:23:30] to sort of ferret out abuse, neglect, fraud and waste. And we got to make sure that those aren’t reduced. And so that’s sort of the other big thing.
I think structurally, we’re looking at the administration and saying, “We need to make sure that disability is still centered here.” The Department of Education is extremely important for students with disabilities and the amount of work they do. And around employment because the vocational rehabilitation system is there. Health and Human [00:24:00] Services impacts people with disabilities in huge, humongous ways. And so we got to make sure that those structures stay strong, that are providing the training, the technical assistance, the support to all the different programs that support people with disabilities and that they’re strong.
Alden Blevins: Yeah, absolutely. I heard education, I heard healthcare. I think these are all bread and butter issues for us and for the community at large. [00:24:30] It can just be tricky to decide when and where to focus your attention.
Stephanie Flynt…: Right. And also too, again, going back to that, how do we mesh the priorities in a way that we could potentially try to work with folks and get stuff done? And I think that that’s kind of where that point of collaboration comes in. Figuring out what the priorities of various offices are and see, how can we kind of mesh ours together? Where’s the common ground? What can we work together [00:25:00] on in order to make things better for disabled folks?
Eric Buehlmann: And I think as Stephanie said, this is where these relationships come into effect, because you have no idea what’s going to be the big issue of the day. Today it may be X, tomorrow it’s going to be Y. The day after it’s going to be Z, and the staff are just overwhelmed a little bit. But if you have those relationships with them, if something comes up and you need to get in touch with them, you shoot them that email, you send them that note [00:25:30] and they know who you are and they’re willing to look and listen to figure out what you’re saying and where it needs to fit in their priorities.
They don’t know who you are, this gets back to the, if you’re not at the table, you’re on the menu, then they’re not going to understand why this is a problem because you’ve not laid that foundation. So that’s where those relationships come to be critically important, because you just never know what’s going to pop up.
Alden Blevins: My next question is, what are kind of the strategies or things that [00:26:00] everyday folks can do to kind of help or support? There’s a lot of overwhelming information coming at folks on all sides. And it would just be really nice if we could know what would be most helpful in terms of getting that community support to advance our priorities.
Stephanie Flynt…: I think for me, the biggest thing that I can think of there is just making sure that your voice is being heard and that you are able to kind of amplify your voice when it comes to these issues. [00:26:30] Making sure that you are reaching out to your senators and representative, things of that nature. Of course, there’s the number for the Capitol switchboard and we can certainly put that in the show notes if that’s helpful to people.
But for everyday folks, it’s so interesting. I’ll be on Facebook and I’ll just see different things and it’ll be videos of people just calling their senators and representative. And it sounds scary, it sounds daunting, but I promise you, getting [00:27:00] constituent calls is definitely something that is super, super helpful in terms of advocacy there. So definitely, definitely recommend that.
Eric Buehlmann: And as Stephanie said, take advantage of those action alerts, take advantage of those days. If you’re looking at your state and local legislatures, a lot of them have disability days where a number of groups will come together and they’ll go to the Capitol and they’ll talk up their issues. Take advantage of those. In terms of the federal, try to keep track of if they’re going to do a town hall or if they’re going to be having a [00:27:30] get together. And go and have a discussion with the staff and the members that are there. And then when it comes to the campaigns, get involved with the campaigns.
Make sure that the candidates have some kind of disability platform as part of their work and what they’re doing. Because ultimately if you’ve, I’m going to say trained, trained them ahead of time, then when they come to Congress or they go into the state legislature, you don’t have to explain as much. You’re not having to spend your time explaining why this issue is important. [00:28:00] You get to jump to, “This is why we need to do this.” So you need to be working at those candidates. You need to be looking at their platforms and you need to be talking to them so that they know that you’re there.
Alden Blevins: Absolutely. I think a lot of times people feel overwhelmed with just knowing how or why to help. And I love that you even mentioned people posting their calls onto social media, because I think that’s another avenue that folks can use. Talk to your friends, talk to your neighbors, talk to people that you talk with online about how these issues impact you [00:28:30] and your life personally. I think that hearing those stories from people with disabilities can be really impactful as well. All right, I’ve got some quicker round of questions just to kind of help folks get to know both you guys and your work.
Stephanie Flynt…: Yay.
Alden Blevins: The first one is just almost similar to two truths and a lie. If you could give me one myth and one truth about federal advocacy, what would you say?
Eric Buehlmann: I think it’s sort of the flip side of the same coin. To me, [00:29:00] the myth that’s out there is, “My voice doesn’t matter.” And that, “Whatever I say isn’t going to be heard by the staff, isn’t going to be heard by the member and I’m not going to really have an impact.” It does. Again, as I said early on, staff are constantly looking for those sources of information. They cannot keep track of all the topics they cover, all the bills they have to do, all the differing appropriations they’re following. They can’t. They rely on the constituents to provide them information. And if you are a trusted resource and providing them good information, [00:29:30] you’ve got your in and they’ll understand and they’ll follow what you’re asking them to do as best they can.
So I think that’s the myth, is that their voice doesn’t make any difference. To me, the flip side of that is the truth is it does make a difference. And so if you’re not engaged, then you’re automatically losing. The disability community needs to be and put itself front and center. Because as Alden said, people with disabilities are a majority of this country. You will eventually be a member [00:30:00] of the disability community. And so therefore, you need to make sure your voice is heard. And so I think the truth is your voice does matter, the myth is people think that it doesn’t.
Stephanie Flynt…: I think for me, a myth that I would say, not as interesting as Eric’s, but I think a myth that I would say, and these are probably for people who are kind of newer or just more on the outskirts of things, is that a bill is going to pass overnight. That’s not how policy works. Usually it takes lots of reiterations of introduction [00:30:30] and stuff, but that’s how it’s designed. And so I think that’s kind of where my truth comes in or where the truth comes in for the myth versus truth, is that policy is designed to take a while, even though it can be frustrating at times, but that’s in order to ensure the appropriate checks and balances and whatnot. So no, you’re not going to enter in and pass a bill in two days. Hate to break into any hopefuls, but you know.
Eric Buehlmann: No, that is a huge one. People think that policy moves at a lightning quick pace. [00:31:00] It is a snail.
Stephanie Flynt…: Yep.
Eric Buehlmann: It takes years. I worked eight years on election reform before we were finally able to get it through Congress. And reauthorizations, I mean, this is one of our smaller ones. The Assistive Technology Act program was last reauthorized in 2004. We finally got the next reauthorization done in 2021. So it moves slowly and you have got… I guess that’s another thing, sort of following up on what you’re saying. The truth is you have to stick to these people.
Stephanie Flynt…: Yes.
Eric Buehlmann: You can’t just say, ” [00:31:30] I talked about this once and it’s going to get done this year.” No, you’re probably back next year.
Stephanie Flynt…: Not how it works.
Eric Buehlmann: And you’re probably back the next Congress and you’re probably back the next Congress. So you will repeatedly have the same conversations.
Stephanie Flynt…: Yes. Especially with staff turnover, too. There are going to be different staff members, folks may move back to the representative or the senator’s districts or their own home districts or change roles, what have you. But there can sometimes be a lot of that [00:32:00] turnover. But that can also be a good thing, too.
Eric Buehlmann: But Stephanie, I think we’ve got another good truth and myth.
Stephanie Flynt…: Oh, okay.
Eric Buehlmann: Which is, the myth in my mind is if I feel like the member’s not supportive or following what I’m talking about and caring about disability, then it’s not worth my time. The truth is staff do a lot of work.
Stephanie Flynt…: Yes.
Eric Buehlmann: And you may encounter a member that is not really [00:32:30] interested in disability, doesn’t really care about disability, but the staff is very interested in disability. And so your message can get conveyed from the staff to the member. You may not always get everything exactly the way you wanted from the member, but you’ve moved him in a direction, or her, in a direction that they weren’t going to go without the staff.
Stephanie Flynt…: Exactly, exactly. Staff definitely have a lot of influence when it comes to different member priorities and things like that, that might not usually be on their [00:33:00] radar, such as disability.
Alden Blevins: Actually, I caught Eric saying something yesterday that I thought was so impactful. Somebody was expressing disappointment that their meeting was with a baby staffer. And I heard Eric say, “That baby staffer could be in charge in 10 years.”
Stephanie Flynt…: I was going to say, like a Chief of Staff in five years-
Alden Blevins: Yeah, you never know what inroads you’re making when you get into those rooms. And you should take the chance once you’re in that room, to make the case for people with disabilities.
Stephanie Flynt…: Yes.
Alden Blevins: This next one, I’m [00:33:30] hearing a lot of themes of perseverance, maybe having to stay on people, having to return year-to-year. This is just a silly question, but what is your Hill day fuel of choice? Is it coffee, is it tea? What keeps you going?
Stephanie Flynt…: I think that mine is probably either, probably Celsius. And then I don’t know if y’all have ever had the Mary’s Gone Crackers, but I like to have little hummus things with me. And so I’ll do the Mary’s Gone Crackers with some hummus on the Hill. And so that’s really good to eat between [00:34:00] meetings and stuff, but they’re really good. They’re quinoa seed crackers, gluten-free, garlicky, basil. I don’t know, they’re really good, especially with hummus. So I guess for me, that’s my food and caffeine.
Eric Buehlmann: And Stephanie no doubt, could tell any of everybody what mine is.
Stephanie Flynt…: Anything gluten-free/unsweetened iced tea from McDonald’s.
Eric Buehlmann: Yep, bingo. I’ve never had coffee in my life.
Alden Blevins: Wow.
Eric Buehlmann: Yeah, I’ve never had coffee in my life.
Stephanie Flynt…: I thought you would at least-
Eric Buehlmann: Nope, never had coffee in my life.
Alden Blevins: Just not even curious?
Stephanie Flynt…: Not a sip?
Eric Buehlmann: I’m curious, [00:34:30] but I’ve never had it. I’ve now reached the age of, “Why should I now start?”
Alden Blevins: This is so fair, because once you start, it’s hard to stop.
Stephanie Flynt…: You’re not going to be able stop.
Alden Blevins: It’s real hard to stop.
Stephanie Flynt…: Especially when you find a roast that you really like.
Eric Buehlmann: I’m a caffeine addict, don’t get me wrong. For many years it was Dr. Pepper, Diet Coke.
Stephanie Flynt…: Diet Coke.
Eric Buehlmann: Doctor said, “No.” Now I’m an unsweetened tea… Well, I’m not going to say always unsweetened tea, but it’s always usually some form of iced tea.
Alden Blevins: [00:35:00] Yeah. And sometimes you sneak in the sweet tea as a treat, I assume?
Eric Buehlmann: No, not really. I’m not a big fan of sweet tea. I find it too sweet.
Alden Blevins: Wow.
Stephanie Flynt…: You have to have the right sweet tea, though.
Eric Buehlmann: Yeah, I’m not from the South.
Stephanie Flynt…: I was going to say-
Eric Buehlmann: I’m in Virginia, but I’m not the South.
Stephanie Flynt…: They don’t make good sweet tea up in the DMV if you want good sweet. Actually, they just started carrying Milo’s at my local grocery store, so that’s what I recommend.
Eric Buehlmann: I’ve seen Milos. Milos is good?
Stephanie Flynt…: I love Milos, yes.
Eric Buehlmann: Okay, I’ll have to get that one.
Stephanie Flynt…: So good, yeah. I mean, it’s sweet, but it’s not too sweet. Anyway.
Eric Buehlmann: See, I find it too sweet. I’ll [00:35:30] mix it with unsweetened iced tea at times. I grew my tea at home. And what I’ll do is I’ll pour a little lemon iced tea in and sort of mix it, but I find it too sweet. But yeah, I’ve never had coffee in my life. Coffee ice cream once or twice, but never-
Stephanie Flynt…: Okay, but that’s really good.
Eric Buehlmann: Nah, no.
Stephanie Flynt…: No?
Eric Buehlmann: No. Coffee smells great. I love the smell of coffee, but I’m not going to try it now if I can avoid it.
Alden Blevins: Good for you. My next one [00:36:00] is just, what is your go-to story when speaking with folks on The Hill? Do you have a P&A story that you feel like you come back to? Do you speak about issues more generally or do you have a go-to story in your back pocket?
Eric Buehlmann: Well, I mean, I think the one I always fall back on is the Kaufman House in Kansas. There was a place in Kansas. I think if you just Google Kaufman House in Kansas, you’ll find it. Basically, this is one of those examples where the P&A was the only one that got in. These [00:36:30] were a husband and wife that were running a, I guess I’d call it a group home, that were doing unspeakably horrible abuse and neglect of people with mental illness. And the state had been called in a number of times, the local people had been called in a number of times, and they just shut the door on them. The P&A went in and exposed the whole thing, basically showing what was going on there.
They got convicted of a number of crimes, they were sent away to jail. To me, that’s the example that I will go [00:37:00] to a lot, is without the P&A, these people would’ve been just still going through abuse and neglect. I mean, I think the P&As are creating stories every single day, honestly. The number of reports that come out from P&As, we just got one from the Maryland… Maryland, wrong M. Minnesota P&A, about the use of seclusion with some amazing pictures of the various seclusion rooms in Minnesota that they had come upon.
I think they’re occurring every single day and all these reports that are coming out. [00:37:30] Our members are in all sorts of facilities, just exposing abuse and neglect. Unfortunately, some of the stuff we really can’t talk about is they’re exposing the waste, fraud and abuse that’s occurring at times in the representative payee program because people aren’t using the benefits to the benefit of people with disabilities, to the beneficiaries. But the one, if you were going to ask me the one, it would be the Kaufman House. And Nancy Jensen testified [00:38:00] in front of Congress on the importance of the P&A program. She’s written some books on the issues that arose, but that would be the one go-to.
Stephanie Flynt…: Yeah. I think for me personally, it really just varies from office to office and various priorities. I will say that one thing I do try to do before meeting with particular offices is I try to reach out to the P&A, just to see if there are any particular stories or any particular things that I should highlight going [00:38:30] on in their state for their senators or representative, or even if there’s anything specific in their district. Eric brought up the report that Minnesota did on restraint and seclusion. And one thing that staffers love is data.
So if you’re able to kind of bring in a visual, say like the report or even send in a report of what’s been going on along with a story, along with data, that’s really going to get you far. And so those are things that I really [00:39:00] try to bring, just tangible stuff that they can take back to their higher ups in order to try to get different things up the chain, in order for us to get the support that we’re wanting to get from that particular office, whether the goal is co-sponsoring a particular bill or sponsoring something, or whether the goal is just general support or flagging something. Just making sure that you have those materials that folks can take back.
Alden Blevins: Yeah, absolutely. And I [00:39:30] think what Eric said about the network generating stories all of the time, every day.
Stephanie Flynt…: Yes.
Alden Blevins: Where I sit, working in communications, is I try to share a story. At least every week, there’s a new, new story coming out about something that a P&A is doing, whether it be work related to abuse and neglect, whether it be work related to some states, they’re already talking about the Medicaid waiver programs and how they can apply some systemic advocacy to ensure that those are protected through the changes [00:40:00] coming in the Medicaid landscape. There’s just always something to be aware of that’s going on. And I think that really harnessing all of those stories together presents a really strong case for what our network is able to do.
Stephanie Flynt…: Absolutely.
Alden Blevins: Yeah. I’ve been told that maybe you’ll have a Hill day or appropriations pun and/or joke?
Stephanie Flynt…: I always have a joke, you know this.
Alden Blevins: Okay, so?
Stephanie Flynt…: Oh my goodness.
Alden Blevins: Let’s get a drum roll.
Stephanie Flynt…: Yes. All right, [00:40:30] so it’s more of a question for Eric.
Eric Buehlmann: Oh, no.
Stephanie Flynt…: Are you ready?
Eric Buehlmann: No, because we did not test this out beforehand.
Stephanie Flynt…: Sorry, okay. How would you describe the appropriations process?
Eric Buehlmann: How?
Stephanie Flynt…: It’s fund.
Alden Blevins: So much fun-d.
Stephanie Flynt…: So much fun.
Alden Blevins: So much fund.
Stephanie Flynt…: Oh my goodness.
Alden Blevins: Incredible.
Stephanie Flynt…: But yes, that is my joke of the month. I’ll be here next month, assuming that I’m not kicked off the podcast [00:41:00] yet. Sorry, Michelle, you weren’t here for the joke, but I’m sure you’re actually laughing even though you pretend you don’t like them.
Alden Blevins: Michelle is groaning from afar.
Stephanie Flynt…: Yes.
Alden Blevins: Yes.
Eric Buehlmann: Stephanie’s puns get us through the day.
Stephanie Flynt…: Yes, they do. See, I knew there was a… Yep, there we go.
Alden Blevins: You got to laugh, you got to laugh.
Stephanie Flynt…: Yes, exactly. Laughing is the best form of self-care when it comes to this kind of work, that’s for sure.
Alden Blevins: Absolutely. It’s important to remember that congressional budgets and federal decision [00:41:30] making say a lot about whose rights are protected and whose are not, what voices are included, what voices are not. And I’m very grateful that I got the chance today to sit down with two of my amazing coworkers and hear more of their voices, get to share more about the amazing work that they do for our larger community. This has been National Disability Radio, where we highlight issues that impact people with disabilities. If you enjoyed this episode, be sure to subscribe and continue the [00:42:00] conversation at ndrn.org or anywhere you get your favorite podcasts. Thanks for listening. Until next time, let’s keep working together to create a world where people with disabilities can thrive.
Stephanie Flynt…: Bye.
43 min
March 05 “I Identify as Blind” disability pride, music and unmasking with Lachi
On this episode of National Disability Radio, we sit down with award-winning recording artist, advocate, and author Lachi for a powerful conversation about disability pride, music, and unmasking.
Lachi shares her journey, from navigating the music industry as a blind artist, to founding RAMPD, a coalition amplifying disability culture across the industry. We talk about what it means to say “I identify as blind,” move beyond the medical and social models of disability into a cultural model rooted in identity and joy, and remind listeners that no one can defeat someone who hasn’t given up.
From glam canes to Grammy stages, this episode is about claiming space, rejecting internalized ableism, and turning perceived flaws into flexes.
Transcript:
Alden Blevins:
It’s Lachi? I feel very-
Lachi:
Lachi like Versace.
Alden Blevins:
Lachi like… Oh, I love that.
Michelle Bishop:
That is the best way to explain it.
Lachi:
I mean, but you know what I’m saying? Come on.
Alden Blevins:
Well, we’re really excited about having you today because we’re all music lovers in this group here.
Michelle Bishop:
Yes.
Alden Blevins:
We talk about music all the time.
Michelle Bishop:
So much.
Lachi:
Good, good, good, good, good, good, good. I’m in the right place.
Michelle Bishop:
Hi everyone. Welcome back to National Disability Radio, the official podcast of the National Disability Rights Network. I am Michelle Bishop, 1/3 of your podcast hosting team.
Stephanie Flynt McEben:
And I’m Stephanie Flynt McEben, public policy analyst here at NDRN.
Alden Blevins:
I am Alden. I am a communication specialist at NDRN and I am so excited today, like I mentioned, we’re all lovers of music, so we got a guest that I’m really excited about. Lachi is an award-winning recording artist and a recording Academy Grammy’s national trustee. She’s also a disability advocate who’s been breaking barriers in the music industry and beyond. She’s the founder of RAMPD, which by the way, is such a fun play name. I really love that. And the author of the upcoming book, I Identify as Blind. So without further ado, Michelle, you’ve got some questions to kick us off, I think.
Michelle Bishop:
Yes. We’re so excited to have you with us. As Alden said, we are. We’re huge music lovers. I’m pretty sure we spend most of our meetings where we allegedly plan this podcast just talking about music. So you’re absolutely in the right place today, but to get us started, I mean, you’ve been open about the fact, and I’m just really interested in this as a disability rights podcast. You’ve been really open about the fact that it took you some time to really embrace your identity as a blind and disabled woman, especially in the industry that you’re in that often really rewards conformity. Can you tell us a little bit more about that journey for you, both as an artist and as someone navigating just the world with a disability?
Lachi:
Okay. Yeah, for sure. Hey, everybody. Lachi here, Lachi like Versace. I am a Black woman with cornrows, chilling here in New York in my studio. I also identify as blind, I identify as neurodivergent, and I identify as an Aries. So do with that what you will.
Michelle Bishop:
All the important points right there.
Lachi:
All the important points like name, age, sign. Thank you. Okay. Yeah, but I’m really glad to be here. And thank you for that question, and thank you for having me. So music has always been a very integral part of my life of growing up. Where other babies would kick in the womb, when she was pregnant with me, I was playing the piano in the womb. I don’t know how she got a piano in there, but she’s not a liar, so I’m going to take her word for it. When I was super-duper young, I didn’t really have a lot of friends, especially because of the fact that I had differences and this and that. And so I would take to music to, I guess, understand the world better and have the world understand me better. I just knew how to express myself through song and it just said the things I needed to say. It was the prayer I needed.
And because of music, I started to find confidence in how to speak and how to behave and how to act. And as I got older, when I was growing up, disability was not necessarily a thing people talked about a lot in schools and teachers didn’t know what to do. My parents didn’t really know what to do. And so I would always just turn to music. It’s actually right now I’m working on a children’s album because I think that kids need to hear music that has to do with disability and neurodivergence, as well as their parents as they grow up. When I got into college, I started wanting to do music, but I studied business and finance because when I told my parents I wanted to do music, they were like, “That’s not how you spell doctor.” because they are Nigerian immigrants and everybody else in my family went to either med school and blah, blah, blah. And I was like, “No, I want to do music.” But I did get a day job after school, after college, and didn’t love it because this girl is not going to exist behind a desk.
So I ended up going to South by Southwest and I got signed actually from playing the guitar at a hole in the wall spot that nobody was at, except for this A&R apparently. So we got signed to an imprint under EMI, which was a major label back then, and we started touring and music then became my life. Now today, why wouldn’t I pay my respects back to music? I mean, it’s because of music that I was able to really lean into who I am, my disability, my confidence, et cetera. So because of that, because of how much music has given to me in my life, I’m here using music to give back to other people with disabilities. Now, your question was essentially, how do you sit here and try to bring about change for disability in an industry that is not only about conformity, but also about like, “Hey, pick me to exploit.” is essentially what the music industry is. You’re raising your hand to be exploited and that’s what kind of authenticity is that?
But at the end of the day, music is some of the truest forms of storytelling. And I think to myself, just the way that hip hop has amplified Black culture and the way that country music has amplified rural culture and the way that different global musics have represented different global cultures. I want to use music to amplify disability culture. I want to use music to amplify disability stories and feelings that are difficult to put words to, that are words of the soul, which is essentially what music is. And so I started going to studios and realizing things weren’t as accessible as they should be. I started speaking with organizations and realizing things weren’t as inclusive as they should be. And the response I kept getting was like, “Oh, well, there’s nobody with a disability in the music industry, so why would we make these measures?”
And so I have made it my life’s goal through RAMPD, which by the way, the best thing we ever accomplished was our acronym, not us working with the Grammys to get sign language on the red carpet, not us getting these partnerships with title, Live Nation, Spotify. I mean, we’ve done so much, not just for artists, but also for professionals. And we’ve started to realize something really interesting with the work we’ve done with RAMPD. We are getting people joining our membership who are director level folks, who are label owners, who are like the big wigs that write the checks, and they’re like, “I’m neurodivergent. I’m actually hard of hearing. I have a TBI.” And so when I originally set out, they said, “We don’t do disability inclusion because nobody’s disabled.” That was three years ago. Now I’m like, not only are there neurodivergent and disabled music professionals out here, but we all are. So really to conclude, it’s just that everyone is navigating trying to make it out in this world, but everyone’s masking.
Everyone feels that they have to change some part of themselves to be as close as they can to what success looks like, be as close as they can to what “beauty” looks like, what winning looks like. But really all it is internalized ableism. And I say, as soon as we drop that internalized ableism and we really start to sit in who we truly are and we start to recognize our perceived flaws as flexes, that’s when we truly start to win. And so that’s what we’re finding out with RAMPD, that people are like, “You know what? I’m tired of navigating this difficult industry with the added layer of having to mask.” And so that’s why I do what I do.
Michelle Bishop:
Yes. And honestly, as ridiculous as it sounds that they say to you, “Oh, there aren’t any people with disabilities.” When I tell you, we see that in everything that we do. I do voting work at NDRN and we’ll have elections officials tell us, “This polling place isn’t accessible, but there aren’t any people with disabilities that vote here.” And it’s like, “What? You realize we’re everywhere and we do all sorts of things.” Maybe the reason they think there’s no people with disabilities here is because they’re stuck outside and they can’t get in because you didn’t make it accessible, just a thought. But I mean, it sounds like coming up against all that is really, correct me if I’m wrong, helped you to develop that identity and that disability pride in the industry. When did you first say, “I identify as blind.” and what did that mean for you?
Lachi:
Well, so when I first came into really doing the disability thing, really leaning in, I wanted to find out more influencers or thought leaders and such with disabilities. I didn’t really know that many people. This is pre COVID, 2018, 2019, that kind of thing. And so I came across an influencer, her name is Molly Burke, and we’re great friends now, but I didn’t know her back then. I had just seen her tagline and it had said, “I’m Molly Burke and I’m a YouTuber who happens to be blind.” And for some reason I was like, “I don’t know if I love the happens to be blind thing.” I was like, “Well, I’m proud of being blind. Blindness is part of my identity. I don’t just happen to be a woman. I don’t just happen to be a Nigerian. I don’t just happen to be all of the things I am.” And so I would go to… I was touring… We’re always touring and every time I tour and do a show, I do a comedic open where I just introduce myself, I do a quick self-description, et cetera.
And in my self-description, I would say, and I don’t just happen to be blind. My blindness is part of my identity, has given me all of the opportunities I have, and it’s really made me a deeper blah, blah, blah. It was just too long. So I had punched it up to be, “My name is Lachi like Versace. She, her, I’m a Black woman with cornrows and I identify as blind.” And the interesting thing about that is people took onto it. They were like, “Oh, that’s cool, nice and punchy.” But whenever I would say it in front of a large crowd or like I’ve said it on interviews or during commercials, I would get this weird, I don’t know, pushback of like, you can’t identify as blind. Blindness is an identity. It’s a medical condition. Or they’ll be like, “Do you read braille or not?”
Or they’ll be like, “We don’t want people to think trans blindness is a thing where you just have a blind identity.” And then you can be like, “Well, I’m blind today, so that’s my identity.” And I thought that was really fun. I was like, “Look, everybody’s upset. They’re talking about blindness though.” So I really leaned all the way into it. And I have to say, I am super proud of my disability identity. Was it music that brought me there? I think in a sense and in a way, like today I have a few songs, you guys are music lovers, I have a few songs out that really talk about my disability pride. I think that a lot of the times as we navigate the world, masking our disability, masking our chronic condition, our difference or whatever, we end up overcompensating. We end up building up this really, really thick problem solving muscle or this really, really thick how to get around things muscle and we overcompensate.
When we’re finally accommodated, when we finally get to a place where we’re accommodated or we have the tools we need, we’re coming in like bulk as hell. We’re coming in with problem solving muscles. We’re coming in with all of these things that we had to build up because of navigating the world differently, because of every day working through this very difficult maze that is living a life unaccommodated, then when we finally are accommodated, then we are killing it and crushing it. And how could you not be proud of that? How can that not give you a sense of pride? So the songs that I would love for you guys to check out that are mine is I have a song called Life on Hard, which has gone viral several times on Instagram. I’m known as an Instagram rapper, which is like, what? Hello, I do disability advocacy. Look at that stuff.
But anyway, so I have a song called Life on Hard, which is essentially about just winning the game of life, playing it on the hardest setting out here while people are still trying to consult the manual. I have another song called Professional, which is oftentimes when I walk on the stage, people see the cane and they’re like, “Aw, she’s going to do a song for us. Is this from Make a Wish Foundation?” And then I bust out these raps or I hop on the piano and I go ape on this piano and then they’re like, “Oh, snap. What? Okay.” And I’m like, “Bro, I’m a professional artist. I’m not object for pity to make you feel good because you felt weird on a Monday and you didn’t feel like getting up for work, but it’s like, she could do it. So can I.”
I’m like, “No, I can do it. You most likely probably just can’t.” So that’s what that song’s about. And then there’s The Bag, and The Bag is just essentially like, I’ve been told no so much like, “No, you can’t. No, you’re not good enough. No, we don’t want you.” And I’m like, “You know what? Yes, I am good enough and I deserve everything. So I’m going to throw everything I deserve in the bag, which is everything.” I don’t know. I would not be the person I am if I didn’t love all parts of myself. And that includes my disabilities, that includes my neurodivergences and all of the other wacky, weird body jazz that I bring with me everywhere I go.
Michelle Bishop:
Lachi, can we maybe, do you and I just FaceTime each other every morning and hype each other up?
Stephanie Flynt McEben:
I was literally about to say the same thing. I would like in on a true call.
Michelle Bishop:
I don’t know if you know. Actually, I want to say quickly, I know some of those songs actually from social media, but they’re real. They’re so real. So people haven’t heard music, go check it out. I don’t know if you know one of our co-hosts, Stephanie is blind. You’re speaking directly to her soul right now.
Stephanie Flynt McEben:
I literally just texted them in our podcast group text and I was like, she’s totally speaking to my soul RN, but of course I don’t want to interrupt anything.
Michelle Bishop:
No, I know you’re dying to talk to her about the book, Stephanie, and take it away.
Stephanie Flynt McEben:
Yeah, no, absolutely, for sure. And as somebody who is blind and who also identifies as a blind person and definitely does not identify with the medical model of disability, clearly gotten to more of a social model. But yeah, in terms of going through that journey of accepting all of who you are and everything about yourself, for me, I mean, it took a minute, especially when you’re talking about your experiences as a child and I totally feel that. I was that girl playing the harmonica on the jungle gym by herself. Anyway, this is about you. This is not about me, but I’m just saying that I totally relate to you on a spiritual level. And given that, I would love to know, were there any particular moments when it came to writing the book that were particularly hard or healing? Because I mean, I think that we all know that it’s not always a linear journey. Some days are going to be harder than others. And so would love to get your perspective on that. And I think that our listeners would be interested.
Lachi:
Yeah, absolutely. The journey for me has been one of constantly unwrapping this amazing gift. I always try to use that as the visual, if you will, of you have this big present and you get to unwrap it and then you just keep getting something cooler inside and then you get to unwrap that and you get something cooler inside and you just keep unwrapping this beautiful gift that is yourself. But you don’t realize that when you first get the box, the amazing stuff that’s going on inside, and it takes time to get to it. So a lot of times growing up, I would kick myself in the butt of, I wish I had come to this when I was so much younger. I wish there were people out there when I was younger, role models that I could look up to when I was eight years old and pointing on the TV and saying like, “Okay, well, I mean, I understand that Ray Charles existed, but that’s not going to…”
Stephanie Flynt McEben:
Stevie Wonder is here, Ray Charles is here, but we need more of us. Hello.
Lachi:
We need more of us. Hello. Exactly. And so this time and place where I am right now is where I needed to be for this to work. So I can’t really kick myself in the butt of like, “I wish I had this. I wish I knew this so much earlier. I would’ve been so much further.” That kind of thing. You have to be where you got to be where you need to be. Even right now, this conversation we’re having right now is going to have been necessary for the next thing that is happening in our lives. And just the other day, I was hanging out with Queen Herby, who’s been one of my favorite more modern rappers. I just did a thing with Apl.de.ap. I have done some stuff with Black Caviar. Folks that I’ve looked up to, I’m having the opportunity to Snoop Dogg.
I’m having the opportunity to work with these days because of the fact that I am here at the right time now. So when I was writing my book, we were peeling back all the layers. I’m a generally very positive and energetic, social butterfly type of person today. But it’s interesting, I wasn’t always this person and I had to unpack all the layers to get there. One of the biggest things that happens to me, so I’ve always been low vision. So I was born with relatively low vision and it stayed the same throughout my teens and early 20s. But one day I woke up and my sight was just gone. Boom. So the interesting thing is anybody listening would be like, “Oh my God, if I woke up and my sight was gone, I would just die or I would not know what to do. My life would be over.”
Stephanie Flynt McEben:
Yep. Heard that a million times. Yes.
Lachi:
But for me, it was weird because I was already low vision, so I was going from level one to the underwater level or whatever. So it wasn’t like that life changing of a thing. I was already using screen readers or Zoom text. I was already doing stuff of that nature. So I wake up blind and I’m just like, “Okay, I guess this is it. This is the day that they told me was coming.” What had ended up happening was my corneas had erupted. And so I went to the doctor and he was like, “You’re going to become completely blind. You’re going to go from this much worse vision than you’ve had to complete blindness over the course of time.” So here you go, here’s a coupon. Bye.” or whatever. So I’m like, all right. So I had decided at that moment that I wanted to start a bucket list.
So I was like, okay, what are all the things I’ve always wanted to do before completely going completely blind? So I was like, let me go skydiving, let me go spolunking, let me go meet with people, meet with celebrities and just do all of the things I’ve always wanted to do before I lose my vision. So I went out and I did it. This is still me doing it. This is still me doing it. And so I say that because to people who say if I ever went blind, I would just die. Well, when I went blind, it made me want to live. And that’s what opened me up into being this person that I am today.
Stephanie Flynt McEben:
That is amazing. I genuinely love that.
Lachi:
We talk about charity model and propping disabled folks up as tools of pity. We talk about medical model, which is really just waiting around for cure, making the cure the hero. We talk about social model, which is a really good place to live in the sense of things are impairing if they’re not accessible. Society is impairing if it’s not inclusive. But honestly, if I have all of the things, like if I have all my tools, if I have all that I need and if folks are inclusive, then I’m still blind, but I’m not impaired. But I like to go a little step further into what is the cultural model.
And so the cultural model is it’s not just a discussion of what society should and shouldn’t do. It’s actually a celebration of what you gain as a person who identifies with their disability or their neurodivergence, the things they need to overcompensate because they’re navigating the world a little differently, leaning into that. So let’s say for instance, deaf culture, sign language, and the fact that folks can have complete discussions outside of what we’re talking about, there is so much deaf pride out in these streets, that is a celebration of culture that comes out of disability.
And for me, let’s say for instance, I have ADHD and it powers my one million and counting ideas. I have diagnosed OCD, which helps me carry out all those one million and counting ideas. I have diagnosed general anxiety disorder, which gives me my empathy and my excitement. And then I am blind, which when I have the tools I need, it gives me drive. It keeps me determined, it keeps me focused, and it gives me my dope ass glam canes. There was a girl and her mom, and she came up to me after a show and she was like, “Oh my God, your music was great.” I was like, thank you. She’s like, “Mommy, can I get one of those canes?” And then her mom was like, “Ugh, well, you have to be blind.” And I’m like, “Yeah, girl, you better want to be me.”
Stephanie Flynt McEben:
Yeah. We drive sticks. Anyway, sorry.
Lachi:
Yes. You know what? I speak softly and I carry a big old stick. Thank you.
Stephanie Flynt McEben:
Yes. Amen to that. Exactly. As somebody who considers themself a lifelong disability advocate, I never really thought about it in the sense of going beyond the social into the cultural. So thank you so, so much. We all learn something new every single day on this podcast, but I’d love to know a little bit more about, obviously you were very, very, very good at talking through these experiences in such a way that they are very relatable and easy to understand and that thing. So I’d love to pick your brain about the intended audience of your book. Who did you write it for? Other blind folks? Did you write it for, was it written for multiple audiences?
Lachi:
Yeah, honestly, I wrote it for the person who is masking. I wrote it for anyone who is tired of… Listen, let me put it like this. Let’s face it, disability is boring, a lot of the time it’s sad and it’s compliancy. We have to go the extra mile to make it fun because the actual truth of it is that the only reason it’s boring, sad, and compliancy is because society has kept it that way through its collective internalized ableism. And so my book is actually a humor book. It’s a pop culture book. It’s a comedy book. In fact, when we were talking to the publisher, it’s like, we should be putting this up against other comedic books, not necessarily disability books because it’s a book. I got so many jokes. I have dad jokes, they’re corny jokes, I have rap bars. I rap in a lot of the book just because I was like, “Hey, this rhymes.” I’m going to say it like a rap. We’re doing the audiobook right now, so I actually get to wrap it, which is really fun.
Stephanie Flynt McEben:
Oh, that is so cool. Oh my gosh.
Lachi:
Which is really, really fun. But really, honestly, what the book is what everything I do is it is using joy, soul, pop culture, jokes, humor, fashion, and just a really good time to celebrate disability, as well as community. So what you’ll find in this book is my story through my story, through historical deep dives, through interviews with some really, really cool popular figures and a really big deep dose of disability joy. And so a lot of folks who have disabilities, they will read this book and they’ll be energized. It’ll be like, “This is really great. I’m glad that I finally get to read a book that talks about disability in a positive way.”
For blind specific folks, they might relate to a few of my stories because I talk about the day I woke up blind, I talk about when I went skydiving blind, I talk about just some of my interesting blind moments. But then I also talk about how I would go to red carpets and not know how to talk to anybody. So I’m in this amazing room with all these celebrities I can’t see and I’m just sitting on the wall. So I talk about some of the hard times too as well. But at the end of the day, really what the book is is an invitation in for somebody who feels a little different, a little awkward, has to mask, and just needed that invite in to talk about disability in a fun, joyful, celebratory way, to recognize that yes, that thing in you that’s different, that thing in you that society has told you you should view as a weakness and hide, you should be proud of.
And I say this to people all the time. I say it in the industry, I say it to all my friends, I say it to anyone who will listen. I say it to my local barista and they come back and they say things like, “Oh my God, I’m so glad you said it that way. It turns out I have a titanium hip and I’ve never told anybody about that.” And that’s the vibe. The vibe is someone who was like, “I really needed this to be said to me this way, and now I am able to step all the way into my disability identity.”
Alden Blevins:
I love, especially what you said about joy. I feel like for me as an autistic person, my experience in the arts is that it is really a space where people who maybe don’t belong in other spaces or don’t feel like they belong in other spaces or are made to feel like they don’t belong in other spaces. I think that a lot of them really do find a safe space in music, in the arts, in theater. And I just wanted to ask, why do you think the music space is such a special one for you and why do you think it’s a place where other people with disabilities seem to flock together as well?
Lachi:
I mean, you hit the nail on the head. Counterculture, I mean, music often rewards counterculture. And then it eventually becomes mainstream and then we got to rebel against that. So music is a place where your soul can speak. And I think a lot of the times with disabilities, especially autism for me, I’m ADHD, OCD, a different neurodivergence situation, but a lot of the issue is communication. We don’t know how to say exactly what we need or whoever we’re talking to just doesn’t know how to hear what we’re saying. And so I think that what music does is it allows a soul to speak to a soul. A lot of the times music does this thing where you’ll be listening to a song and you’ll just be like, “That, that right there. That’s what I it me. That’s the thing I’m feeling.” type deal. Music has the ability to do that.
And so for me, right now, this children’s album that I’m working on, the kids’ album, which is an album that is essentially R&B, pop, electronic, sort of the genres that I dance in for kids centered on disability and neurodivergence. Because what I want to do is be able to say, “Hey, I want you to point at that and say, that’s me.” And I think the easiest and quickest way to point at something and say, “That’s me also.” has been music. And so it’s why it’s been my strongest medium. Again, it’s not my only medium. I’m talking to folks through the book, I’m talking to folks through fashion, et cetera, et cetera.
But again, music has been just the quickest, easiest point A to point B conversation easer, if you will, about disability. Another thing I also love to use is humor and comedy. So I make jokes all the time. They’re all bad. They’re all very not good jokes. I need to probably get a joke writer, but the fact that I’m having such a good time telling the jokes, I think I think is all that really matters. So I think both music and humor are just really, really great spaces for two people to get to relate to something that may be difficult to talk about.
Stephanie Flynt McEben:
Yo, if you need a joke writer, I’m your girl. I actually do a joke every single episode of this podcast.
Michelle Bishop:
Her jokes are not better than yours, Lachi. Don’t hire her.
Stephanie Flynt McEben:
My jokes are pretty bad. They’re worse than dad’s jokes. They’re like granddad jokes.
Alden Blevins:
Yeah. Stephanie is the queen of the jokes on our podcast. She always brings one through. Didn’t know that you were working on a children’s music album, and I think that’s really interesting. I actually used to be a teacher, so children’s music is something that’s near and dear to my heart. So I just wanted to ask, what would you want to tell to younger people with disabilities, younger disabled creatives about claiming space and being able to tell their own stories?
Lachi:
Well, one thing that I heard from someone else, I don’t remember who it was. I think it was-
Michelle Bishop:
Jordan?
Lachi:
Yes, Jordan. He’s the one that said this.
Michelle Bishop:
I love him.
Lachi:
Yeah, he’s so funny. I met him at a… What did I meet him at? The Webby Awards or something. But anyway, no one can ever defeat someone who hasn’t given up. And for some reason that hit me, and I don’t even think he was trying to say it that deep. He was just saying a joke or something. But I took that and it was like, no one can ever defeat someone who hasn’t given up. So at the end of the day, you are really the only one who can end whatever you’re trying to get. Because as long as you are still going for it, it is still still there. It’s like a Schrodinger’s cat. It’s like as long as you’re still running for it, that opportunity is still there for you to have. The opportunity is never lost as long as you’re still going for it.
And people can tell you, people can take your shoulders and tell you to go right. People can take your shoulders and tell you to go left. But until you take your own shoulders and go in the direction that your heart, your soul, your passion, your fire, desires, that is when you truly begin to live. And so I say personally, lean into that. I hear from a lot of younger, especially creators with disabilities. I mentor a lot of folks, tons and tons of folks. It’s one of the things I love to do the most. But what I love to tell folks is you are going to be the best you. And that you is going to include all of the different parts of who you are, but it is especially going to include you leaning in to the things that make you different and unique as unique selling points.
Earlier I talked about how people try so hard to be the “definition of beauty”, definition of success, definition of whatever. Everyone’s trying to be this reference man. Everyone’s trying to be as close as they can to the reference man. And if I’m as close as I can to the reference man, then I’ll be successful or then I’ll get this job or then I’ll get this gig. But the truth of the matter is when we look at all of the people that are doing all of the big things, they’re “eccentric”. They’re “weird”. They did some big different idea that no one was thinking about and everybody fell into their trend.
The further away you are from the reference man, that is when you start to win. That is when you’ll start to see success. That is when you’ll start to feel much better about yourself. That is when you can wake up in the morning, look in the mirror and say, “I am fine.” When you are able to accept all of those different freckles of yourself that are as far away from the reference man as possible, because guess what? There is room outside of the barrel for everyone to win if they are all being their unique self and running their unique purpose. That’s what I would tell to young disabled creators.
Michelle Bishop:
That’s amazing. Almost feel like we should stop there, but I have so many follow-up questions.
Lachi:
Listen, I’m here to drop as many mics as they will let me keep breaking.
Michelle Bishop:
I was wondering how you see the conversation around disability and inclusion and evolving these days. And a lot of our listeners are people with disabilities or people who have other even multiple intersecting identities in which they experience barriers as well. What does allyship look like to you?
Lachi:
This is one of my favorite questions. So yes, we have folks with disabilities and we have folks who want to work with people with disabilities, want to help a friend with a disability, want to make sure they don’t say the wrong thing to a person with a disability, neurodivergence, chronic condition, mental health condition. That’s not an ally. Wanting to help a person with a disability is not an ally. To me, wanting to support someone with a disability, that’s an ally in the very basic definition of allyship. Here’s what I think an ally is. To answer the question, I got to do two things. One, talk about the disability umbrella. So the disability umbrella encompasses so many forms of disability. It is neurodivergence, which is ADHD, dyslexia, OCD. It is mental health conditions like anxiety, depression, bipolar. It is someone who learns a little differently.
It is someone who has explosive situations like anger management. It is someone who has substance abuse disorder, maybe somebody who drinks too much or uses different substances. It is chronic back pain. You know what I’m saying? It is asthma. It is EDS. It’s POTS. It is long COVID. It is different complications that you gain after pregnancy. It is different complications that you gain as you age. It is different complications you gain through menopause. It is temporary. It is breaking your arm and wearing a cast. It is seasonal depression. There is nobody on this earth that is not within the disability umbrella. And I don’t mean that you’re going to grow into it. I don’t mean in the future. I mean right now. Whether you identify as a person with a disability or not, you have disability identity because you have experience in your body disability. And when you figure that out, then you’re an ally. Allyship is seeing yourself through the other person because you can’t look through someone else’s eyes unless you can see yourself in them. And you can’t see yourself in disability until you recognize the disability identity within yourself.
All of a sudden, and I say this and people are like, “What? I say this, but I’ve seen this. I’ve seen it happen. I’ve seen people who did not associate themselves with any form of disability or anything and they’re just like, Oh, them. Oh, I’ll help them. We have a conversation and then we have a follow-up conversation and then we’re drinking and then all of a sudden they’re telling me all their disabilities and then they’re walking a little different when they encounter disability. It’s no longer a them thing. And so that’s what an ally is. People with disabilities are also allies. I am an ally to the deaf community because I recognize though I’m not deaf, I see the having to navigate the world differently in you of myself. So that’s how I define an ally. An ally is someone who understands their own disability identity and can see it in others.
Michelle Bishop:
Don’t mind me over here just taking notes.
Stephanie Flynt McEben:
Literally. Oh my gosh. Lachi, thank you so, so, so much for being with us and taking time. I know that your website, lachimusic.com is one of the places where folks can stay up to date on all of the latest and greatest things that you’re up to. Is there anything else in particular you would like to plug for our listeners?
Lachi:
Like you said, LACHI, L-A-C-H-I M-U-S-I-C. I’m on the internets everywhere. Instagram, Spotify, check out the old music. If you’re a creator, a music creator or professional with a disability, check us out at RAMPD, R-A-M-P-D.org. Or if you want to donate or if you want to partner with us over at RAMPD, please do. If you are a cane user, whether you’re a blind cane user or you use Mobility Cane, check out glamcanes.com, get your canes bejeweled. I Identify as Blind, our book is out on Penguin Random House, imprint called Tiny Reparations by Phoebe Robinson, who is also a comedian. So we’re out here all writing very funny books. So please check it out. And lastly, listen, try to find moments in your day of disability joy. And when you find that moment, take a picture of it or write it down so that you can go back to it and live for those moments. So thank you guys so much for having me on this podcast. It’s really been a blast getting to talk at you about all things I identify as blind.
Alden Blevins:
I love it. I was over here taking notes too because I just found so much of myself in what you were saying and so many things were poignant and empowering. I, as an autistic person, try to be an ally to other parts of the disability community myself. And that’s something where I’m always trying to put myself in the shoes of another person and what they might experience. So I think that’s really powerful. We were so grateful to be able to connect and learn more about you, Lachi.
Lachi:
Yes, yes, yes. So honored to be here, guys.
Michelle Bishop:
Before you head out, Lachi, do you want to hear one of Stephanie’s grandpa jokes?
Lachi:
I was going to say, I was like, “Let’s hear one of these granddad jokes.” Let me see.
Stephanie Flynt McEben:
Okay. This might be-
Michelle Bishop:
Okay, do it.
Stephanie Flynt McEben:
… a granddad joke. Okay. Where do spiders like to get their information?
Lachi:
The web?
Michelle Bishop:
That would be something to do with web.
Stephanie Flynt McEben:
But what kind of web?
Lachi:
Wow. Really? You are fired from being my comedy writer. You are fired to be my comedy writer. I was rooting for you too. I was like, let’s just… Please.
Stephanie Flynt McEben:
I wouldn’t even get to the punchline yet.
Michelle Bishop:
Worldwide web?
Stephanie Flynt McEben:
It is the worldwide web.
Michelle Bishop:
Oh.
Stephanie Flynt McEben:
It’s fine. It’s fine. My wife warned me not to tell that joke this month and I didn’t lose it.
Michelle Bishop:
Oh my gosh. I’m so glad you stuck around for that part.
Lachi:
As I live and breathe. Thank you guys so, so much. This has been so much fun and I will see who else I can tell that joke to. And go ahead and just to help you out, Stephanie, I’ll go ahead and embarrass myself by telling that joke to others.
Stephanie Flynt McEben:
Not my best work, but that is allyship. Yes.
Michelle Bishop:
Oh my gosh, Lachi, thank you so much. And everyone, please lachimusic.com. Check it out. Listen to the music, read the book.
Alden Blevins:
Speaking of the worldwide web, this has been National Disability Radio. We celebrate stories, leadership, and talent of people with disabilities. If you enjoyed this episode, be sure to subscribe, share, and continue the conversation with us on that worldwide web at ndrn.org or anywhere you get your favorite podcasts. Thanks for listening and until next time.
Stephanie Flynt McEben:
Bye.
43 min
March 05 “I Identify as Blind” – disability pride, music and unmasking with Lachi
On this episode of National Disability Radio, we sit down with award-winning recording artist, advocate, and author Lachi for a powerful conversation about disability pride, music, and unmasking.
Lachi shares her journey, from navigating the music industry as a blind artist, to founding RAMPD, a coalition amplifying disability culture across the industry. We talk about what it means to say “I identify as blind,” move beyond the medical and social models of disability into a cultural model rooted in identity and joy, and remind listeners that no one can defeat someone who hasn’t given up.
From glam canes to Grammy stages, this episode is about claiming space, rejecting internalized ableism, and turning perceived flaws into flexes.
Transcript:
Alden Blevins:
It’s Lachi? I feel very-
Lachi:
Lachi like Versace.
Alden Blevins:
Lachi like… Oh, I love that.
Michelle Bishop:
That is the best way to explain it.
Lachi:
I mean, but you know what I’m saying? Come on.
Alden Blevins:
Well, we’re really excited about having you today because we’re all music lovers in this group here.
Michelle Bishop:
Yes.
Alden Blevins:
We talk about music all the time.
Michelle Bishop:
So much.
Lachi:
Good, good, good, good, good, good, good. I’m in the right place.
Michelle Bishop:
Hi everyone. Welcome back to National Disability Radio, the official podcast of the National Disability Rights Network. I am Michelle Bishop, 1/3 of your podcast hosting team.
Stephanie Flynt McEben:
And I’m Stephanie Flynt McEben, public policy analyst here at NDRN.
Alden Blevins:
I am Alden. I am a communication specialist at NDRN and I am so excited today, like I mentioned, we’re all lovers of music, so we got a guest that I’m really excited about. Lachi is an award-winning recording artist and a recording Academy Grammy’s national trustee. She’s also a disability advocate who’s been breaking barriers in the music industry and beyond. She’s the founder of RAMPD, which by the way, is such a fun play name. I really love that. And the author of the upcoming book, I Identify as Blind. So without further ado, Michelle, you’ve got some questions to kick us off, I think.
Michelle Bishop:
Yes. We’re so excited to have you with us. As Alden said, we are. We’re huge music lovers. I’m pretty sure we spend most of our meetings where we allegedly plan this podcast just talking about music. So you’re absolutely in the right place today, but to get us started, I mean, you’ve been open about the fact, and I’m just really interested in this as a disability rights podcast. You’ve been really open about the fact that it took you some time to really embrace your identity as a blind and disabled woman, especially in the industry that you’re in that often really rewards conformity. Can you tell us a little bit more about that journey for you, both as an artist and as someone navigating just the world with a disability?
Lachi:
Okay. Yeah, for sure. Hey, everybody. Lachi here, Lachi like Versace. I am a Black woman with cornrows, chilling here in New York in my studio. I also identify as blind, I identify as neurodivergent, and I identify as an Aries. So do with that what you will.
Michelle Bishop:
All the important points right there.
Lachi:
All the important points like name, age, sign. Thank you. Okay. Yeah, but I’m really glad to be here. And thank you for that question, and thank you for having me. So music has always been a very integral part of my life of growing up. Where other babies would kick in the womb, when she was pregnant with me, I was playing the piano in the womb. I don’t know how she got a piano in there, but she’s not a liar, so I’m going to take her word for it. When I was super-duper young, I didn’t really have a lot of friends, especially because of the fact that I had differences and this and that. And so I would take to music to, I guess, understand the world better and have the world understand me better. I just knew how to express myself through song and it just said the things I needed to say. It was the prayer I needed.
And because of music, I started to find confidence in how to speak and how to behave and how to act. And as I got older, when I was growing up, disability was not necessarily a thing people talked about a lot in schools and teachers didn’t know what to do. My parents didn’t really know what to do. And so I would always just turn to music. It’s actually right now I’m working on a children’s album because I think that kids need to hear music that has to do with disability and neurodivergence, as well as their parents as they grow up. When I got into college, I started wanting to do music, but I studied business and finance because when I told my parents I wanted to do music, they were like, “That’s not how you spell doctor.” because they are Nigerian immigrants and everybody else in my family went to either med school and blah, blah, blah. And I was like, “No, I want to do music.” But I did get a day job after school, after college, and didn’t love it because this girl is not going to exist behind a desk.
So I ended up going to South by Southwest and I got signed actually from playing the guitar at a hole in the wall spot that nobody was at, except for this A&R apparently. So we got signed to an imprint under EMI, which was a major label back then, and we started touring and music then became my life. Now today, why wouldn’t I pay my respects back to music? I mean, it’s because of music that I was able to really lean into who I am, my disability, my confidence, et cetera. So because of that, because of how much music has given to me in my life, I’m here using music to give back to other people with disabilities. Now, your question was essentially, how do you sit here and try to bring about change for disability in an industry that is not only about conformity, but also about like, “Hey, pick me to exploit.” is essentially what the music industry is. You’re raising your hand to be exploited and that’s what kind of authenticity is that?
But at the end of the day, music is some of the truest forms of storytelling. And I think to myself, just the way that hip hop has amplified Black culture and the way that country music has amplified rural culture and the way that different global musics have represented different global cultures. I want to use music to amplify disability culture. I want to use music to amplify disability stories and feelings that are difficult to put words to, that are words of the soul, which is essentially what music is. And so I started going to studios and realizing things weren’t as accessible as they should be. I started speaking with organizations and realizing things weren’t as inclusive as they should be. And the response I kept getting was like, “Oh, well, there’s nobody with a disability in the music industry, so why would we make these measures?”
And so I have made it my life’s goal through RAMPD, which by the way, the best thing we ever accomplished was our acronym, not us working with the Grammys to get sign language on the red carpet, not us getting these partnerships with title, Live Nation, Spotify. I mean, we’ve done so much, not just for artists, but also for professionals. And we’ve started to realize something really interesting with the work we’ve done with RAMPD. We are getting people joining our membership who are director level folks, who are label owners, who are like the big wigs that write the checks, and they’re like, “I’m neurodivergent. I’m actually hard of hearing. I have a TBI.” And so when I originally set out, they said, “We don’t do disability inclusion because nobody’s disabled.” That was three years ago. Now I’m like, not only are there neurodivergent and disabled music professionals out here, but we all are. So really to conclude, it’s just that everyone is navigating trying to make it out in this world, but everyone’s masking.
Everyone feels that they have to change some part of themselves to be as close as they can to what success looks like, be as close as they can to what “beauty” looks like, what winning looks like. But really all it is internalized ableism. And I say, as soon as we drop that internalized ableism and we really start to sit in who we truly are and we start to recognize our perceived flaws as flexes, that’s when we truly start to win. And so that’s what we’re finding out with RAMPD, that people are like, “You know what? I’m tired of navigating this difficult industry with the added layer of having to mask.” And so that’s why I do what I do.
Michelle Bishop:
Yes. And honestly, as ridiculous as it sounds that they say to you, “Oh, there aren’t any people with disabilities.” When I tell you, we see that in everything that we do. I do voting work at NDRN and we’ll have elections officials tell us, “This polling place isn’t accessible, but there aren’t any people with disabilities that vote here.” And it’s like, “What? You realize we’re everywhere and we do all sorts of things.” Maybe the reason they think there’s no people with disabilities here is because they’re stuck outside and they can’t get in because you didn’t make it accessible, just a thought. But I mean, it sounds like coming up against all that is really, correct me if I’m wrong, helped you to develop that identity and that disability pride in the industry. When did you first say, “I identify as blind.” and what did that mean for you?
Lachi:
Well, so when I first came into really doing the disability thing, really leaning in, I wanted to find out more influencers or thought leaders and such with disabilities. I didn’t really know that many people. This is pre COVID, 2018, 2019, that kind of thing. And so I came across an influencer, her name is Molly Burke, and we’re great friends now, but I didn’t know her back then. I had just seen her tagline and it had said, “I’m Molly Burke and I’m a YouTuber who happens to be blind.” And for some reason I was like, “I don’t know if I love the happens to be blind thing.” I was like, “Well, I’m proud of being blind. Blindness is part of my identity. I don’t just happen to be a woman. I don’t just happen to be a Nigerian. I don’t just happen to be all of the things I am.” And so I would go to… I was touring… We’re always touring and every time I tour and do a show, I do a comedic open where I just introduce myself, I do a quick self-description, et cetera.
And in my self-description, I would say, and I don’t just happen to be blind. My blindness is part of my identity, has given me all of the opportunities I have, and it’s really made me a deeper blah, blah, blah. It was just too long. So I had punched it up to be, “My name is Lachi like Versace. She, her, I’m a Black woman with cornrows and I identify as blind.” And the interesting thing about that is people took onto it. They were like, “Oh, that’s cool, nice and punchy.” But whenever I would say it in front of a large crowd or like I’ve said it on interviews or during commercials, I would get this weird, I don’t know, pushback of like, you can’t identify as blind. Blindness is an identity. It’s a medical condition. Or they’ll be like, “Do you read braille or not?”
Or they’ll be like, “We don’t want people to think trans blindness is a thing where you just have a blind identity.” And then you can be like, “Well, I’m blind today, so that’s my identity.” And I thought that was really fun. I was like, “Look, everybody’s upset. They’re talking about blindness though.” So I really leaned all the way into it. And I have to say, I am super proud of my disability identity. Was it music that brought me there? I think in a sense and in a way, like today I have a few songs, you guys are music lovers, I have a few songs out that really talk about my disability pride. I think that a lot of the times as we navigate the world, masking our disability, masking our chronic condition, our difference or whatever, we end up overcompensating. We end up building up this really, really thick problem solving muscle or this really, really thick how to get around things muscle and we overcompensate.
When we’re finally accommodated, when we finally get to a place where we’re accommodated or we have the tools we need, we’re coming in like bulk as hell. We’re coming in with problem solving muscles. We’re coming in with all of these things that we had to build up because of navigating the world differently, because of every day working through this very difficult maze that is living a life unaccommodated, then when we finally are accommodated, then we are killing it and crushing it. And how could you not be proud of that? How can that not give you a sense of pride? So the songs that I would love for you guys to check out that are mine is I have a song called Life on Hard, which has gone viral several times on Instagram. I’m known as an Instagram rapper, which is like, what? Hello, I do disability advocacy. Look at that stuff.
But anyway, so I have a song called Life on Hard, which is essentially about just winning the game of life, playing it on the hardest setting out here while people are still trying to consult the manual. I have another song called Professional, which is oftentimes when I walk on the stage, people see the cane and they’re like, “Aw, she’s going to do a song for us. Is this from Make a Wish Foundation?” And then I bust out these raps or I hop on the piano and I go ape on this piano and then they’re like, “Oh, snap. What? Okay.” And I’m like, “Bro, I’m a professional artist. I’m not object for pity to make you feel good because you felt weird on a Monday and you didn’t feel like getting up for work, but it’s like, she could do it. So can I.”
I’m like, “No, I can do it. You most likely probably just can’t.” So that’s what that song’s about. And then there’s The Bag, and The Bag is just essentially like, I’ve been told no so much like, “No, you can’t. No, you’re not good enough. No, we don’t want you.” And I’m like, “You know what? Yes, I am good enough and I deserve everything. So I’m going to throw everything I deserve in the bag, which is everything.” I don’t know. I would not be the person I am if I didn’t love all parts of myself. And that includes my disabilities, that includes my neurodivergences and all of the other wacky, weird body jazz that I bring with me everywhere I go.
Michelle Bishop:
Lachi, can we maybe, do you and I just FaceTime each other every morning and hype each other up?
Stephanie Flynt McEben:
I was literally about to say the same thing. I would like in on a true call.
Michelle Bishop:
I don’t know if you know. Actually, I want to say quickly, I know some of those songs actually from social media, but they’re real. They’re so real. So people haven’t heard music, go check it out. I don’t know if you know one of our co-hosts, Stephanie is blind. You’re speaking directly to her soul right now.
Stephanie Flynt McEben:
I literally just texted them in our podcast group text and I was like, she’s totally speaking to my soul RN, but of course I don’t want to interrupt anything.
Michelle Bishop:
No, I know you’re dying to talk to her about the book, Stephanie, and take it away.
Stephanie Flynt McEben:
Yeah, no, absolutely, for sure. And as somebody who is blind and who also identifies as a blind person and definitely does not identify with the medical model of disability, clearly gotten to more of a social model. But yeah, in terms of going through that journey of accepting all of who you are and everything about yourself, for me, I mean, it took a minute, especially when you’re talking about your experiences as a child and I totally feel that. I was that girl playing the harmonica on the jungle gym by herself. Anyway, this is about you. This is not about me, but I’m just saying that I totally relate to you on a spiritual level. And given that, I would love to know, were there any particular moments when it came to writing the book that were particularly hard or healing? Because I mean, I think that we all know that it’s not always a linear journey. Some days are going to be harder than others. And so would love to get your perspective on that. And I think that our listeners would be interested.
Lachi:
Yeah, absolutely. The journey for me has been one of constantly unwrapping this amazing gift. I always try to use that as the visual, if you will, of you have this big present and you get to unwrap it and then you just keep getting something cooler inside and then you get to unwrap that and you get something cooler inside and you just keep unwrapping this beautiful gift that is yourself. But you don’t realize that when you first get the box, the amazing stuff that’s going on inside, and it takes time to get to it. So a lot of times growing up, I would kick myself in the butt of, I wish I had come to this when I was so much younger. I wish there were people out there when I was younger, role models that I could look up to when I was eight years old and pointing on the TV and saying like, “Okay, well, I mean, I understand that Ray Charles existed, but that’s not going to…”
Stephanie Flynt McEben:
Stevie Wonder is here, Ray Charles is here, but we need more of us. Hello.
Lachi:
We need more of us. Hello. Exactly. And so this time and place where I am right now is where I needed to be for this to work. So I can’t really kick myself in the butt of like, “I wish I had this. I wish I knew this so much earlier. I would’ve been so much further.” That kind of thing. You have to be where you got to be where you need to be. Even right now, this conversation we’re having right now is going to have been necessary for the next thing that is happening in our lives. And just the other day, I was hanging out with Queen Herby, who’s been one of my favorite more modern rappers. I just did a thing with Apl.de.ap. I have done some stuff with Black Caviar. Folks that I’ve looked up to, I’m having the opportunity to Snoop Dogg.
I’m having the opportunity to work with these days because of the fact that I am here at the right time now. So when I was writing my book, we were peeling back all the layers. I’m a generally very positive and energetic, social butterfly type of person today. But it’s interesting, I wasn’t always this person and I had to unpack all the layers to get there. One of the biggest things that happens to me, so I’ve always been low vision. So I was born with relatively low vision and it stayed the same throughout my teens and early 20s. But one day I woke up and my sight was just gone. Boom. So the interesting thing is anybody listening would be like, “Oh my God, if I woke up and my sight was gone, I would just die or I would not know what to do. My life would be over.”
Stephanie Flynt McEben:
Yep. Heard that a million times. Yes.
Lachi:
But for me, it was weird because I was already low vision, so I was going from level one to the underwater level or whatever. So it wasn’t like that life changing of a thing. I was already using screen readers or Zoom text. I was already doing stuff of that nature. So I wake up blind and I’m just like, “Okay, I guess this is it. This is the day that they told me was coming.” What had ended up happening was my corneas had erupted. And so I went to the doctor and he was like, “You’re going to become completely blind. You’re going to go from this much worse vision than you’ve had to complete blindness over the course of time.” So here you go, here’s a coupon. Bye.” or whatever. So I’m like, all right. So I had decided at that moment that I wanted to start a bucket list.
So I was like, okay, what are all the things I’ve always wanted to do before completely going completely blind? So I was like, let me go skydiving, let me go spolunking, let me go meet with people, meet with celebrities and just do all of the things I’ve always wanted to do before I lose my vision. So I went out and I did it. This is still me doing it. This is still me doing it. And so I say that because to people who say if I ever went blind, I would just die. Well, when I went blind, it made me want to live. And that’s what opened me up into being this person that I am today.
Stephanie Flynt McEben:
That is amazing. I genuinely love that.
Lachi:
We talk about charity model and propping disabled folks up as tools of pity. We talk about medical model, which is really just waiting around for cure, making the cure the hero. We talk about social model, which is a really good place to live in the sense of things are impairing if they’re not accessible. Society is impairing if it’s not inclusive. But honestly, if I have all of the things, like if I have all my tools, if I have all that I need and if folks are inclusive, then I’m still blind, but I’m not impaired. But I like to go a little step further into what is the cultural model.
And so the cultural model is it’s not just a discussion of what society should and shouldn’t do. It’s actually a celebration of what you gain as a person who identifies with their disability or their neurodivergence, the things they need to overcompensate because they’re navigating the world a little differently, leaning into that. So let’s say for instance, deaf culture, sign language, and the fact that folks can have complete discussions outside of what we’re talking about, there is so much deaf pride out in these streets, that is a celebration of culture that comes out of disability.
And for me, let’s say for instance, I have ADHD and it powers my one million and counting ideas. I have diagnosed OCD, which helps me carry out all those one million and counting ideas. I have diagnosed general anxiety disorder, which gives me my empathy and my excitement. And then I am blind, which when I have the tools I need, it gives me drive. It keeps me determined, it keeps me focused, and it gives me my dope ass glam canes. There was a girl and her mom, and she came up to me after a show and she was like, “Oh my God, your music was great.” I was like, thank you. She’s like, “Mommy, can I get one of those canes?” And then her mom was like, “Ugh, well, you have to be blind.” And I’m like, “Yeah, girl, you better want to be me.”
Stephanie Flynt McEben:
Yeah. We drive sticks. Anyway, sorry.
Lachi:
Yes. You know what? I speak softly and I carry a big old stick. Thank you.
Stephanie Flynt McEben:
Yes. Amen to that. Exactly. As somebody who considers themself a lifelong disability advocate, I never really thought about it in the sense of going beyond the social into the cultural. So thank you so, so much. We all learn something new every single day on this podcast, but I’d love to know a little bit more about, obviously you were very, very, very good at talking through these experiences in such a way that they are very relatable and easy to understand and that thing. So I’d love to pick your brain about the intended audience of your book. Who did you write it for? Other blind folks? Did you write it for, was it written for multiple audiences?
Lachi:
Yeah, honestly, I wrote it for the person who is masking. I wrote it for anyone who is tired of… Listen, let me put it like this. Let’s face it, disability is boring, a lot of the time it’s sad and it’s compliancy. We have to go the extra mile to make it fun because the actual truth of it is that the only reason it’s boring, sad, and compliancy is because society has kept it that way through its collective internalized ableism. And so my book is actually a humor book. It’s a pop culture book. It’s a comedy book. In fact, when we were talking to the publisher, it’s like, we should be putting this up against other comedic books, not necessarily disability books because it’s a book. I got so many jokes. I have dad jokes, they’re corny jokes, I have rap bars. I rap in a lot of the book just because I was like, “Hey, this rhymes.” I’m going to say it like a rap. We’re doing the audiobook right now, so I actually get to wrap it, which is really fun.
Stephanie Flynt McEben:
Oh, that is so cool. Oh my gosh.
Lachi:
Which is really, really fun. But really, honestly, what the book is what everything I do is it is using joy, soul, pop culture, jokes, humor, fashion, and just a really good time to celebrate disability, as well as community. So what you’ll find in this book is my story through my story, through historical deep dives, through interviews with some really, really cool popular figures and a really big deep dose of disability joy. And so a lot of folks who have disabilities, they will read this book and they’ll be energized. It’ll be like, “This is really great. I’m glad that I finally get to read a book that talks about disability in a positive way.”
For blind specific folks, they might relate to a few of my stories because I talk about the day I woke up blind, I talk about when I went skydiving blind, I talk about just some of my interesting blind moments. But then I also talk about how I would go to red carpets and not know how to talk to anybody. So I’m in this amazing room with all these celebrities I can’t see and I’m just sitting on the wall. So I talk about some of the hard times too as well. But at the end of the day, really what the book is is an invitation in for somebody who feels a little different, a little awkward, has to mask, and just needed that invite in to talk about disability in a fun, joyful, celebratory way, to recognize that yes, that thing in you that’s different, that thing in you that society has told you you should view as a weakness and hide, you should be proud of.
And I say this to people all the time. I say it in the industry, I say it to all my friends, I say it to anyone who will listen. I say it to my local barista and they come back and they say things like, “Oh my God, I’m so glad you said it that way. It turns out I have a titanium hip and I’ve never told anybody about that.” And that’s the vibe. The vibe is someone who was like, “I really needed this to be said to me this way, and now I am able to step all the way into my disability identity.”
Alden Blevins:
I love, especially what you said about joy. I feel like for me as an autistic person, my experience in the arts is that it is really a space where people who maybe don’t belong in other spaces or don’t feel like they belong in other spaces or are made to feel like they don’t belong in other spaces. I think that a lot of them really do find a safe space in music, in the arts, in theater. And I just wanted to ask, why do you think the music space is such a special one for you and why do you think it’s a place where other people with disabilities seem to flock together as well?
Lachi:
I mean, you hit the nail on the head. Counterculture, I mean, music often rewards counterculture. And then it eventually becomes mainstream and then we got to rebel against that. So music is a place where your soul can speak. And I think a lot of the times with disabilities, especially autism for me, I’m ADHD, OCD, a different neurodivergence situation, but a lot of the issue is communication. We don’t know how to say exactly what we need or whoever we’re talking to just doesn’t know how to hear what we’re saying. And so I think that what music does is it allows a soul to speak to a soul. A lot of the times music does this thing where you’ll be listening to a song and you’ll just be like, “That, that right there. That’s what I it me. That’s the thing I’m feeling.” type deal. Music has the ability to do that.
And so for me, right now, this children’s album that I’m working on, the kids’ album, which is an album that is essentially R&B, pop, electronic, sort of the genres that I dance in for kids centered on disability and neurodivergence. Because what I want to do is be able to say, “Hey, I want you to point at that and say, that’s me.” And I think the easiest and quickest way to point at something and say, “That’s me also.” has been music. And so it’s why it’s been my strongest medium. Again, it’s not my only medium. I’m talking to folks through the book, I’m talking to folks through fashion, et cetera, et cetera.
But again, music has been just the quickest, easiest point A to point B conversation easer, if you will, about disability. Another thing I also love to use is humor and comedy. So I make jokes all the time. They’re all bad. They’re all very not good jokes. I need to probably get a joke writer, but the fact that I’m having such a good time telling the jokes, I think I think is all that really matters. So I think both music and humor are just really, really great spaces for two people to get to relate to something that may be difficult to talk about.
Stephanie Flynt McEben:
Yo, if you need a joke writer, I’m your girl. I actually do a joke every single episode of this podcast.
Michelle Bishop:
Her jokes are not better than yours, Lachi. Don’t hire her.
Stephanie Flynt McEben:
My jokes are pretty bad. They’re worse than dad’s jokes. They’re like granddad jokes.
Alden Blevins:
Yeah. Stephanie is the queen of the jokes on our podcast. She always brings one through. Didn’t know that you were working on a children’s music album, and I think that’s really interesting. I actually used to be a teacher, so children’s music is something that’s near and dear to my heart. So I just wanted to ask, what would you want to tell to younger people with disabilities, younger disabled creatives about claiming space and being able to tell their own stories?
Lachi:
Well, one thing that I heard from someone else, I don’t remember who it was. I think it was-
Michelle Bishop:
Jordan?
Lachi:
Yes, Jordan. He’s the one that said this.
Michelle Bishop:
I love him.
Lachi:
Yeah, he’s so funny. I met him at a… What did I meet him at? The Webby Awards or something. But anyway, no one can ever defeat someone who hasn’t given up. And for some reason that hit me, and I don’t even think he was trying to say it that deep. He was just saying a joke or something. But I took that and it was like, no one can ever defeat someone who hasn’t given up. So at the end of the day, you are really the only one who can end whatever you’re trying to get. Because as long as you are still going for it, it is still still there. It’s like a Schrodinger’s cat. It’s like as long as you’re still running for it, that opportunity is still there for you to have. The opportunity is never lost as long as you’re still going for it.
And people can tell you, people can take your shoulders and tell you to go right. People can take your shoulders and tell you to go left. But until you take your own shoulders and go in the direction that your heart, your soul, your passion, your fire, desires, that is when you truly begin to live. And so I say personally, lean into that. I hear from a lot of younger, especially creators with disabilities. I mentor a lot of folks, tons and tons of folks. It’s one of the things I love to do the most. But what I love to tell folks is you are going to be the best you. And that you is going to include all of the different parts of who you are, but it is especially going to include you leaning in to the things that make you different and unique as unique selling points.
Earlier I talked about how people try so hard to be the “definition of beauty”, definition of success, definition of whatever. Everyone’s trying to be this reference man. Everyone’s trying to be as close as they can to the reference man. And if I’m as close as I can to the reference man, then I’ll be successful or then I’ll get this job or then I’ll get this gig. But the truth of the matter is when we look at all of the people that are doing all of the big things, they’re “eccentric”. They’re “weird”. They did some big different idea that no one was thinking about and everybody fell into their trend.
The further away you are from the reference man, that is when you start to win. That is when you’ll start to see success. That is when you’ll start to feel much better about yourself. That is when you can wake up in the morning, look in the mirror and say, “I am fine.” When you are able to accept all of those different freckles of yourself that are as far away from the reference man as possible, because guess what? There is room outside of the barrel for everyone to win if they are all being their unique self and running their unique purpose. That’s what I would tell to young disabled creators.
Michelle Bishop:
That’s amazing. Almost feel like we should stop there, but I have so many follow-up questions.
Lachi:
Listen, I’m here to drop as many mics as they will let me keep breaking.
Michelle Bishop:
I was wondering how you see the conversation around disability and inclusion and evolving these days. And a lot of our listeners are people with disabilities or people who have other even multiple intersecting identities in which they experience barriers as well. What does allyship look like to you?
Lachi:
This is one of my favorite questions. So yes, we have folks with disabilities and we have folks who want to work with people with disabilities, want to help a friend with a disability, want to make sure they don’t say the wrong thing to a person with a disability, neurodivergence, chronic condition, mental health condition. That’s not an ally. Wanting to help a person with a disability is not an ally. To me, wanting to support someone with a disability, that’s an ally in the very basic definition of allyship. Here’s what I think an ally is. To answer the question, I got to do two things. One, talk about the disability umbrella. So the disability umbrella encompasses so many forms of disability. It is neurodivergence, which is ADHD, dyslexia, OCD. It is mental health conditions like anxiety, depression, bipolar. It is someone who learns a little differently.
It is someone who has explosive situations like anger management. It is someone who has substance abuse disorder, maybe somebody who drinks too much or uses different substances. It is chronic back pain. You know what I’m saying? It is asthma. It is EDS. It’s POTS. It is long COVID. It is different complications that you gain after pregnancy. It is different complications that you gain as you age. It is different complications you gain through menopause. It is temporary. It is breaking your arm and wearing a cast. It is seasonal depression. There is nobody on this earth that is not within the disability umbrella. And I don’t mean that you’re going to grow into it. I don’t mean in the future. I mean right now. Whether you identify as a person with a disability or not, you have disability identity because you have experience in your body disability. And when you figure that out, then you’re an ally. Allyship is seeing yourself through the other person because you can’t look through someone else’s eyes unless you can see yourself in them. And you can’t see yourself in disability until you recognize the disability identity within yourself.
All of a sudden, and I say this and people are like, “What? I say this, but I’ve seen this. I’ve seen it happen. I’ve seen people who did not associate themselves with any form of disability or anything and they’re just like, Oh, them. Oh, I’ll help them. We have a conversation and then we have a follow-up conversation and then we’re drinking and then all of a sudden they’re telling me all their disabilities and then they’re walking a little different when they encounter disability. It’s no longer a them thing. And so that’s what an ally is. People with disabilities are also allies. I am an ally to the deaf community because I recognize though I’m not deaf, I see the having to navigate the world differently in you of myself. So that’s how I define an ally. An ally is someone who understands their own disability identity and can see it in others.
Michelle Bishop:
Don’t mind me over here just taking notes.
Stephanie Flynt McEben:
Literally. Oh my gosh. Lachi, thank you so, so, so much for being with us and taking time. I know that your website, lachimusic.com is one of the places where folks can stay up to date on all of the latest and greatest things that you’re up to. Is there anything else in particular you would like to plug for our listeners?
Lachi:
Like you said, LACHI, L-A-C-H-I M-U-S-I-C. I’m on the internets everywhere. Instagram, Spotify, check out the old music. If you’re a creator, a music creator or professional with a disability, check us out at RAMPD, R-A-M-P-D.org. Or if you want to donate or if you want to partner with us over at RAMPD, please do. If you are a cane user, whether you’re a blind cane user or you use Mobility Cane, check out glamcanes.com, get your canes bejeweled. I Identify as Blind, our book is out on Penguin Random House, imprint called Tiny Reparations by Phoebe Robinson, who is also a comedian. So we’re out here all writing very funny books. So please check it out. And lastly, listen, try to find moments in your day of disability joy. And when you find that moment, take a picture of it or write it down so that you can go back to it and live for those moments. So thank you guys so much for having me on this podcast. It’s really been a blast getting to talk at you about all things I identify as blind.
Alden Blevins:
I love it. I was over here taking notes too because I just found so much of myself in what you were saying and so many things were poignant and empowering. I, as an autistic person, try to be an ally to other parts of the disability community myself. And that’s something where I’m always trying to put myself in the shoes of another person and what they might experience. So I think that’s really powerful. We were so grateful to be able to connect and learn more about you, Lachi.
Lachi:
Yes, yes, yes. So honored to be here, guys.
Michelle Bishop:
Before you head out, Lachi, do you want to hear one of Stephanie’s grandpa jokes?
Lachi:
I was going to say, I was like, “Let’s hear one of these granddad jokes.” Let me see.
Stephanie Flynt McEben:
Okay. This might be-
Michelle Bishop:
Okay, do it.
Stephanie Flynt McEben:
… a granddad joke. Okay. Where do spiders like to get their information?
Lachi:
The web?
Michelle Bishop:
That would be something to do with web.
Stephanie Flynt McEben:
But what kind of web?
Lachi:
Wow. Really? You are fired from being my comedy writer. You are fired to be my comedy writer. I was rooting for you too. I was like, let’s just… Please.
Stephanie Flynt McEben:
I wouldn’t even get to the punchline yet.
Michelle Bishop:
Worldwide web?
Stephanie Flynt McEben:
It is the worldwide web.
Michelle Bishop:
Oh.
Stephanie Flynt McEben:
It’s fine. It’s fine. My wife warned me not to tell that joke this month and I didn’t lose it.
Michelle Bishop:
Oh my gosh. I’m so glad you stuck around for that part.
Lachi:
As I live and breathe. Thank you guys so, so much. This has been so much fun and I will see who else I can tell that joke to. And go ahead and just to help you out, Stephanie, I’ll go ahead and embarrass myself by telling that joke to others.
Stephanie Flynt McEben:
Not my best work, but that is allyship. Yes.
Michelle Bishop:
Oh my gosh, Lachi, thank you so much. And everyone, please lachimusic.com. Check it out. Listen to the music, read the book.
Alden Blevins:
Speaking of the worldwide web, this has been National Disability Radio. We celebrate stories, leadership, and talent of people with disabilities. If you enjoyed this episode, be sure to subscribe, share, and continue the conversation with us on that worldwide web at ndrn.org or anywhere you get your favorite podcasts. Thanks for listening and until next time.
Stephanie Flynt McEben:
Bye.
43 min
November 14, 2025 National Disability Radio: Alden’s AuDHD Journey
Alden Blevins, the newest host of National Disability Radio, has a personal journey with autism and ADHD that has shaped her perspective on disability rights and advocacy. Alden was misdiagnosed with anxiety and depression as a child, and did not receive the correct diagnosis of autism and ADHD until her late 20s. Alden describes her experience navigating the workplace and healthcare systems as an autistic individual, emphasizing the challenges of "passing" as neurotypical and the importance of self-accommodating.
31 min
September 10, 2025 National Disability Radio: And Then There Were 2
Jack is going off to law school. So the gang sits down to reminisce on his time at NDRN, share a few stories from behind the scenes, and hear a joke from Stephanie that gets a good laugh out of us.
Full transcript available at: https://www.ndrn.org/resource/ndr-august25/
Jack Rosen:
Like we have any sort of agenda for today, so just sort of going to get what I get. Turn that into a podcast, I guess.
Stephanie Flynt McEben:
Sure.
Michelle Bishop:
And that’s different from any other episode because…
Jack Rosen:
It’s not, it genuinely, I guess is not, I suppose at some point we’d have a guest and questions we thought we should ask them.
Michelle Bishop:
Oh.
Stephanie Flynt McEben:
I’m the guest and I have the questions. I don’t know.
Jack Rosen:
I’m pretty sure you’re not the guest.
Michelle Bishop:
It’s fine.
Stephanie Flynt McEben:
I’m pretty sure Jack is the guest.
Jack Rosen:
I’m sort of the guest.
Stephanie Flynt McEben:
What?
Michelle Bishop:
Wait what?
Stephanie Flynt McEben:
This episode is for Jack, isn’t it?
Jack Rosen:
It would be very funny if we just made it the Stephanie episode, even though we’ve done like two of those.
Stephanie Flynt McEben:
No. That would make me feel like such a bad chicken nugget.
Jack Rosen:
Even though we’ve already done-
Stephanie Flynt McEben:
This is all about you.
Michelle Bishop:
We already did a Stephanie wedding episode.
Jack Rosen:
We did a whole one about you getting married.
Stephanie Flynt McEben:
We’ve already done a bunch of episodes about me doing chicken-nuggety things like, come on.
Michelle Bishop:
Oh, that reminds me. My mom wants to hear about the legally blind Uber driver.
Stephanie Flynt McEben:
I forgot that I slipped that into an episode.
Michelle Bishop:
Yeah, she’s still listening and she has some follow-up questions.
Stephanie Flynt McEben:
I love this.
Michelle Bishop:
Well pack might have to address that at some point.
Jack Rosen:
Well, Stephanie, do you want to address it? I mean, let’s give the people what they want, I guess.
Stephanie Flynt McEben:
Yeah, I guess we can give the people what they want.
Michelle Bishop:
Yeah, we have one listener, so we should probably follow up on that for her.
Stephanie Flynt McEben:
Yeah, no, that makes sense. And Carol, thank you so much for being a dedicated, loyal listener to this wonderful podcast. So I will give a slighter Cliff Notes version just so it doesn’t take up the whole hour. So I am waiting for a car outside of, I can’t remember which Metro stop it was, but I had to go get something, and so I just figured I’d take an Uber home from the Metro because that particular Metro was a lot easier to get a car and it would only be a 20-minute ride. Okay, fine. This is what I’ll do. And so I get out of the Metro station, I’m trying to find my driver or whatever, yada, yada, and I can’t even remember his name. Maybe we should just call him Bob for anonymity. I am bad at saying that too. But yeah, so Bob pulls up in some sort of Toyota of some sort and I get in the car and we start driving and I noticed that I’m hearing a lot more horns, but I’m just not thinking about it because it’s rush hour DC traffic.
And then we started, he was like, “You know, I’ll be honest with you, I’m legally blind. I can only see out of one eye.” And I was like, “Oh, okay.” And I’m just trying to think of some of the things that he said, but he said different things that were essentially low vision, blind hacks or what have you. I’m trying to remember the specific hacks, but honestly, when he said, “I’m legally blind,” I was kind of like, “Huh, Jesus, take the wheel. Please get me home safe.” So it was a wild ride. No, that was not an intended pun but we can make it a pun.
Jack Rosen:
So you’re saying he might’ve had limited vision in the one eye?
Stephanie Flynt McEben:
Yeah, potentially. But, he said that he was only legally blind, he was legally blind or totally blind out of one eye, and then he could see out of the other eye just fine.
Jack Rosen:
You don’t sound convinced he could see just fine out of the other eye.
Stephanie Flynt McEben:
I’m not.
I don’t want to say it. Jack has to say it.
Jack Rosen:
I don’t want to say it. Michelle, kick us off as always.
Stephanie Flynt McEben:
Yeah, Michelle, you do that. Yeah.
Michelle Bishop:
Why is it always me? Okay.
Stephanie Flynt McEben:
Because you’re such a good public speaker and I’m really sad right now.
Jack Rosen:
We’re already dealing with enough change. I don’t want to deal with more. Could you please kick us off?
Michelle Bishop:
On this very special episode of National Disability Radio, we say goodbye to our pro-host extraordinaire, Jack Rosen, who is leaving NDRN to go to law school. Yay, Jack. We need an applause. We’ve never had an applause. Can we-
Stephanie Flynt McEben:
I know I keep saying that. Oh my gosh. But seriously, Jack, we’re going to miss you so, so, so much. And you have been an amazing pro-host with the most.
Jack Rosen:
I also have bad news. I definitely did not have enough time left to add in the applause, but…
Stephanie Flynt McEben:
Clap, clap, clap, clap, clap, clap clap, there. I’m trying not to, oh man. That made me sound facetious. I might have to-
Jack Rosen:
No, we’re keeping that in.
Michelle Bishop:
That’s definitely staying in. The part where Stephanie was very salty with you is definitely staying in. This is still the most professional podcast in the business.
Stephanie Flynt McEben:
Yes, it is.
Michelle Bishop:
We pay the big money for the good effects.
Stephanie Flynt McEben:
Yes.
Jack Rosen:
But thank you Michelle. I am sad to be leaving NDRN. It’s been five years here. I started back, for those who don’t know, I started back in 2020. It was actually pretty early COVID. It was May the fourth, because I’ll always remember it’s Star Wars Day.
Michelle Bishop:
Yes. You started-
Stephanie Flynt McEben:
May the fourth be with you.
Jack Rosen:
And it’s funny, NDRN was pretty much the last job interview I had at the start of COVID because nowhere else in the world was hiring. And I interviewed with Michelle and David Hutt and our former ED for a position on the voting team, and I told them at the time like, “Hey, my background is really in politics and comms. I’m a person with a disability. I have ADHD. And I’ve received services throughout my life for it, but I don’t know a ton about the disability rights movement, but I’m willing to learn.” And I got lucky enough that they decided to take a chance on me.
And so for the first two years I was here, I worked for Michelle helping get out the vote in the role that our friend Monica is in now. Then about three years ago, I switched over to the communications team, and one of my first projects there was that we had this podcast they wanted to restart and for, God, yeah, three years now since, we have been putting this out together, meeting once a month, usually meeting twice a month because we’re disorganized and what we do is create a podcast episode and then every time forget to do the intro and outro to it. A little behind the scenes, we have never recorded one of those in the same time we’ve recorded the interview.
Michelle Bishop:
They have to know because sometimes one of us just isn’t .there
Stephanie Flynt McEben:
Or is sick or something. Thank you-
Michelle Bishop:
For part of the episode, how come Stephanie was in the interview, but she wasn’t there when they did the intro?
Stephanie Flynt McEben:
Right. They have questions.
Michelle Bishop:
We’re super good at this.
Stephanie Flynt McEben:
We have all the questions. We are sorry guys. Sometimes we have migraines, sometimes things happen in life.
Michelle Bishop:
Also, Stephanie made us start the podcast.
Stephanie Flynt McEben:
I did not.
Michelle Bishop:
That was 100% Stephanie. I was the only host that was left, Justice and Erica were already gone. And Stephanie was like, “I want to host a podcast. We need to do this podcast.” And then they were like, “I guess Jack has to do it and produce it.”
Stephanie Flynt McEben:
So what you’re saying is that I made Jack and you do this against your will.
Michelle Bishop:
Yes.
Stephanie Flynt McEben:
No.
Jack Rosen:
You definitely added a significant chunk of my workload. This is one of my core responsibilities.
Stephanie Flynt McEben:
I’m sorry.
Michelle Bishop:
We remember it the same way. It was totally Stephanie.
Stephanie Flynt McEben:
It was not.
Jack Rosen:
I kind of think it was you Stephanie.
Stephanie Flynt McEben:
Lies, slander, blasphemy.
Jack Rosen:
I know Michelle did not want to start doing this again.
Michelle Bishop:
Another episode.
Stephanie Flynt McEben:
I kind of made it worth it with my awesome jokes, right, yeah?
Michelle Bishop:
Oh, um…
Stephanie Flynt McEben:
No?
Jack Rosen:
I’ve enjoyed Michelle’s reaction to them a lot. When did we, now I’m wondering when we started adding the puns. I think it was-
Michelle Bishop:
From the beginning.
Jack Rosen:
It wasn’t the first episode. I’m looking right now. It was the second one Stephanie.
Stephanie Flynt McEben:
It only took me one episode.
Jack Rosen:
It took you one episode, and then on the third one we added, I believe Stephanie’s iconic sound.
Stephanie Flynt McEben:
Yes.
Michelle Bishop:
For Stephanie’s Joke of the Month. Everyone else needs to know what we are living with over here with Stephanie and the puns.
Stephanie Flynt McEben:
I’m sorry that you guys have been personally victimized by me for almost four years now.
Jack Rosen:
So yeah, after five years here, I decided it was time to make a little bit of a career change and I decided to go to law school. I decided, I’ll say hopefully a career change, but not necessarily a field change. The law school I picked out is one that has a disability law clinic and a strong focus on public interest. It’s sort of funny. It all comes full circle that I can remember five years ago telling you guys, I don’t know a lot about this, but I’d like the opportunity. And it was something I always vaguely wanted to do, disability rights, but I thought it would be like, oh, after I’ve had a corporate or a politics career, maybe I could give back that way.
And even then it was just vaguely I’ll do something to help people with disabilities, it wasn’t, I want to get into legally-based disability advocacy. And five years later I’m like, oh, when I’m looking at these law schools, I need to find one where I can go further in this field and expand my skill set and be able to do more here. So I don’t know, I’m sad to be leaving. I’m also grateful to you, Michelle, because it definitely changed my career trajectory in a way I never expected. And it is bittersweet. But we have shared probably too much of our personal lives on this podcast for three years now. So we figured really no other way to end it than with the podcast.
Michelle Bishop:
And we are three of the least interesting people.
Stephanie Flynt McEben:
Hey, rude. Everybody thinks I’m interesting.
Michelle Bishop:
No, Jack, we’re going to miss you.
Stephanie Flynt McEben:
Yeah we are.
Michelle Bishop:
It has been a pleasure to work with you all this time. I’m glad we converted you into a full-blown lifelong disability rights advocate.
Stephanie Flynt McEben:
Yes.
Michelle Bishop:
[inaudible 00:10:09] on you when you were young, scrappy and hungry.
Stephanie Flynt McEben:
We did not throw away our shot as NDRN.
Michelle Bishop:
I’m going to quote Hamilton in this episode until we get sued because we have to get sued at least once.
Stephanie Flynt McEben:
We have to get sued for Jack’s last episode.
Michelle Bishop:
We have to get sued at least once before Jack leaves.
Stephanie Flynt McEben:
Lawsuit, lawsuit.
Jack Rosen:
It’s been my entire goal while producing this podcast has been to get us sued. I’ve tried by-
Michelle Bishop:
We’ve tried everything. How many copyrights can we violate?
Jack Rosen:
We’ve tried to get Taylor to sue us. We’ve tried to get the cast of Hamilton. We didn’t do Disney. We’re scared of them.
Stephanie Flynt McEben:
I thought we did do Disney. Remember, we sang Let It Go?
Michelle Bishop:
We sang Let It Go?
Jack Rosen:
You know what, yes, we did do Disney.
Michelle Bishop:
I thought Jay-Z was going to sue us when I didn’t put him in my Top Five on the live episode.
Stephanie Flynt McEben:
Oh, on the live episode. I was like, wait, is going, how is Mississippi, Michelle?
Michelle Bishop:
It’s raining.
Stephanie Flynt McEben:
The rain in Mississippi is annoying. It’s like extra humid.
Michelle Bishop:
Totally. All the time. Oh yeah. It’s humid. I’m not built for this.
Stephanie Flynt McEben:
No, it’s extra humid.
Michelle Bishop:
It’s stormy. The whole time. So I haven’t really gotten to see the glory of your home state.
Stephanie Flynt McEben:
Oh, so sad. Yeah. Nope. You got to go to Keefer’s and Bulldog.
Michelle Bishop:
Okay, I’ll work on that.
Jack Rosen:
What is Bulldog?
Stephanie Flynt McEben:
But Jack, seriously, we are very much going to miss you, and I just can’t thank you enough for being such a good coworker, colleague, friend, and confidant during my time at NDRN. And I know that you won’t be far, but yeah, it’s been amazing working with you. Whether we’re coming up with tweets or I’m bothering you with puns or all that good stuff. Oh, or that one thing that happened last year at annual conference], the getting kicked out of the bar thing, which probably should be.
Michelle Bishop:
That’s why-
Jack Rosen:
In our defense, and we’re not going to say which bar, they were being kind of ableist.
Stephanie Flynt McEben:
They were totally being ableist.
Jack Rosen:
Can we tell the story on the pod?
Michelle Bishop:
Don’t name the bar. That’s definitely how-
Jack Rosen:
We’re not going to name the bar.
Stephanie Flynt McEben:
Is it bad that I can’t even remember what the name of that bar was?
Michelle Bishop:
Where was I even when this was happening?
Jack Rosen:
I think you must have been asleep. Wait, we can’t say where we were either, Stephanie.
Michelle Bishop:
Did you just call me old in the middle of a podcast episode. Where was I when you guys were at the bar?
Stephanie Flynt McEben:
Asleep, Michelle, you’re ancient.
Jack Rosen:
You were invited. Yeah, but I think we were there at like 11:30 at night.
Michelle Bishop:
Okay. That’s worse. Could you tell people it was like 2:00 A.M. or something?
Jack Rosen:
Yeah. Stephanie and I were out, we were at the club. It was 3:00 A.M.
Stephanie Flynt McEben:
Everybody in the club getting, okay, I’m done. Anyway, it was 3:00 A.M. We were at the club in Nowhereville.
Michelle Bishop:
It’s 11:30, you know your Gen X bedtime does not allow you to be up past 10:00.
Stephanie Flynt McEben:
Low key. I go to bed at nine o’clock on the rag.
Michelle Bishop:
We need older people on this podcast.
Stephanie Flynt McEben:
Oh, come on. I go to bed at nine o’clock. I’m basically an oldish person now.
Jack Rosen:
I’m pretty sure your new producer is going to be my age, I’m pretty sure.
Michelle Bishop:
But if we’re getting the producer, I think we’re getting, she is a Swifty, so now it’s just going to be an all Swifty crew. So we look forward to the next episode of this podcast where it’s all about people with disabilities who love Taylor Swift.
Jack Rosen:
I may have warned her when I was telling her how to produce the podcast. I’m like, so for the first 20 minutes they usually talk about Taylor and then I turn the recording on after, so I don’t have to go through all of that because eventually we’ll just get to the podcast. But you got to let them go through talking about Taylor Swift first.
Stephanie Flynt McEben:
<< Don’t say that I didn’t warn you >>
Michelle Bishop:
Nice.
Stephanie Flynt McEben:
I’m over here-
Michelle Bishop:
You don’t need to hear all my theories about when Rep TV was going to be dropped since it’s apparently never coming. So that’s fine. I have a little embarrassment.
Jack Rosen:
You have been predicting it for years.
Michelle Bishop:
I mean, some of the evidence was convincing, okay. Never mind. It’s fine. It’s fine. It’s fine.
Jack Rosen:
Is she not now that she owns her catalog? I thought she would anyway.
Michelle Bishop:
She never actually recorded it, so…
Jack Rosen:
Really?
Michelle Bishop:
Yeah, she’s only recorded like a quarter of it, so I’m thinking it’s a no. There’s going to be Vault Tracks though, Stephanie Vault Tracks. We still have things to look forward to.
Stephanie Flynt McEben:
I love the Vault Tracks, honestly.
Michelle Bishop:
Right?
Stephanie Flynt McEben:
Nothing New is like my jam.
Michelle Bishop:
You know I saw that Live with Phoebe Bridgers.
Stephanie Flynt McEben:
I am-
Michelle Bishop:
Oh, this is already transitioning into a Taylor Swift podcast and Jack is still here.
Stephanie Flynt McEben:
Right? God bless it. I’m still so jealous that you got to see Phoebe and Taylor and you got to see Taylor three times.
Michelle Bishop:
Okay. Jack Antonoff also came out that night and Ice Spice. Anyway.
Stephanie Flynt McEben:
Hair flip.
Michelle Bishop:
We should probably talk about Jack or at least disability rights or something.
Jack Rosen:
At least the podcast, maybe?
Michelle Bishop:
The podcast.
Stephanie Flynt McEben:
No. Let’s talk about Jack. This is the Jack episode.
Jack Rosen:
Okay. I guess we’ll do a couple stories from my time at NDRN.
Michelle Bishop:
Yeah, we need your favorite stories from your time at NDRN. Yes.
Stephanie Flynt McEben:
Don’t let either of us jack the episode from you.
Michelle Bishop:
Nothing illegal.
Jack Rosen:
Oh, come on Stephanie, that one was lazy.
Michelle Bishop:
Stephanie, did you really just say that?
Jack Rosen:
I have heard that-
Stephanie Flynt McEben:
Don’t let any of us jack the, oh, come on. That was fun.
Jack Rosen:
Not giving you that one.
Michelle Bishop:
I don’t don’t know if I’m disappointed or proud of that one.
Stephanie Flynt McEben:
You should be disproud-pointed.
Michelle Bishop:
It’s like 50/50. Anyway Jack, no illegal stories, please.
Jack Rosen:
No.
Stephanie Flynt McEben:
We don’t want to get sued for that reason.
Jack Rosen:
Okay.
Michelle Bishop:
Yeah, there’s certain things we want to be sued for and certain things we should avoid.
Stephanie Flynt McEben:
What are some of the funniest stories from your time at NDRN?
Jack Rosen:
Let’s think. I mean, yeah, as we alluded to, there was the time, Stephanie and I, at one of our annual conferences, we were out at an undisclosed location. It was very late. Michelle was in fact there earlier partying it up, but then she was like, “Hey, it’s 3:45 A.M. I got to get out of here before sunrise.”
Michelle Bishop:
Thank you.
Jack Rosen:
Yes. But no, they double charged Stephanie at this bar. They were claiming the credit card transaction wouldn’t go through, it was bad. They just kept trying to talk to me and show me the receipt and I’m like, A, I’m not dealing with this. You guys figure it out, and B, you are just being wildly ableist to us right now.
Stephanie Flynt McEben:
So ridiculous.
Jack Rosen:
But let’s see, what else? That one was wild just because I did not ever think in my years of working here, I would be not quite asked to leave, but certainly not asked to come back.
Michelle Bishop:
You did also ride in a self-driving car.
Jack Rosen:
We did-
Stephanie Flynt McEben:
Oh yeah.
Jack Rosen:
We did record an episode from a self-driving car. That was when Raquel was on the pod. It was me, her and Marcia.
Stephanie Flynt McEben:
I think I was also leaving a bar if I’m correct.
Jack Rosen:
That one was. That was after when we all went out to a Mexican restaurant at the Phoenix conference and Marcia just, we ordered it and Marcia just sort of volunteered. She’s like, “Okay, I wanna come along and see this.” I’m like, “Okay, but you’re on the podcast.”
Stephanie Flynt McEben:
That is the trade-off.
Jack Rosen:
Yes.
Michelle Bishop:
I also wasn’t there. I’m never there when these things happen.
Jack Rosen:
I don’t know why you weren’t there for that.
Michelle Bishop:
Am I always sleeping?
Stephanie Flynt McEben:
No.
Jack Rosen:
I feel like both of you weren’t there for the self-driving car one.
Stephanie Flynt McEben:
Yeah, I wasn’t there because I had, we were doing a public policy team dinner, so that’s why I wasn’t there.
Michelle Bishop:
It was supposed to be for Stephanie, because-
Stephanie Flynt McEben:
I know and I never got to ride-
Michelle Bishop:
Because it was supposed to be about self-driving cars for blind people.
Stephanie Flynt McEben:
I know. I never got to ride in it.
Jack Rosen:
Stephanie, they’re coming to DC.
Stephanie Flynt McEben:
I know. I’m so excited. Quinn on the other hand is not.
Michelle Bishop:
I’m pretty sure I saw one already.
Stephanie Flynt McEben:
Yeah, they were doing test laps around our building.
Jack Rosen:
Yeah, they’re testing a ton out in my neighborhood. I don’t fully trust them, but I’m not going to lie, they’re cheap and convenient and I’ve had some bad Uber drivers in DC.
Stephanie Flynt McEben:
Oh Lord boy, do we.
Jack Rosen:
Let’s see. What’s another appropriate NDRN story we could tell?
Stephanie Flynt McEben:
Appropriate.
Jack Rosen:
Really appropriate.
Stephanie Flynt McEben:
Any stories from traveling for the documentary?
Michelle Bishop:
That’s why I’m not here for any of them. I might only be there for the stories that are inappropriate.
Jack Rosen:
I mean, with the documentary, this was funny. So we’re there and we’re getting towards the last day of our travel in, so yeah, we were in South Carolina. It was me, Monica, and a third person who helped make the documentary who’s a little more private, but shout out them. They helped a ton with it and taught me a lot about filming.
But anyway, so the three of us, we discovered early on that week that our last night there Katt Williams was going to perform and we wanted to go. We all wanted to go really bad, but as the director, I had to keep being the bad guy and being like, “Okay, Monica, we will, if we don’t have any interviews scheduled that day, and we have all these people we need to interview before we can leave South Carolina, we can’t blow any off to,” she didn’t want to blow any off, but I had to be, as I often am at NDRN the last few years, the person who says no to things, and I don’t know if that’s feasible.
Stephanie Flynt McEben:
You guys don’t don’t know what kind of a bummer Jack is on a regular basis, y’all.
Jack Rosen:
And finally we got the last interview scheduled and we were so hyped. We all just went out to see Katt Williams together and it was the perfect way to end having worked together and been on the road for two weeks, traveling, filming, doing 10-hour days interviewing people.
Stephanie Flynt McEben:
And it probably saved your friendship with Monica.
Jack Rosen:
Oh yeah. Even if she’ll never forgive me for the fact I didn’t invite her to a music festival with my friends. That’s a joke.
Michelle Bishop:
She’s still trying to get into that with you though, right?
Jack Rosen:
What?
Stephanie Flynt McEben:
Daily.
Michelle Bishop:
Into that festival, or is this a different one?
Jack Rosen:
She what?
Stephanie Flynt McEben:
It’s a different one. There’s been two incidents.
Michelle Bishop:
There’s been two. Okay.
Jack Rosen:
Both times that I went to a music festival in Los Angeles I did not invite her to. It’s okay. You know I love you Monica, and we’ll go to the next one.
Michelle Bishop:
I do have a very special announcement to make for the After Hours Jack’s Goodbye episode. I have to say, you’ve been our producer for a couple of years now. We have frequently referred to as our pro host since you’re our producer, you’re our Gelman, if you will. Our producer who gets to talk during the episodes, not so much a silent partner as you first began. And so I want to say before you go, Jack, you are a host of the podcast.
Stephanie Flynt McEben:
See, finally.
Jack Rosen:
I’m genuinely a little touched.
Stephanie Flynt McEben:
We finally, we finally got you to admit it, Michelle.
Jack Rosen:
Finally.
Michelle Bishop:
That’s a very bad hatchet.
Jack Rosen:
After hosting episodes you haven’t been on.
Stephanie Flynt McEben:
Wait, Jack, are you crying?
Jack Rosen:
No.
Michelle Bishop:
No, but that’s how we’re going to tell the story, and then Jack cried. Also, the people need to know that we don’t actually hate each other.
Jack Rosen:
No. Michelle is like my mentor, she’s a friend, and she has been a mentor to me as I’ve entered a career in disability rights.
Michelle Bishop:
I’m like the sarcastic persona on this show, and I’m pretty sure everyone thinks that I’m mean, and I hate you guys, but we actually all get along quite well despite the fact that I’m apparently never there when anyone goes to the bar. But other than that…
Stephanie Flynt McEben:
We’ll make sure you’re there for the next one.
Michelle Bishop:
Thank you. I’ll probably be too tired, but I appreciate the thought.
Jack Rosen:
It’ll be funny. You’ll just miss my goodbye Happy Hour.
Michelle Bishop:
Oh.
Stephanie Flynt McEben:
I was going to say, are you going to miss that? Hopefully no.
Michelle Bishop:
No, I’m going to be there. I am, but that’s happy hour. That’s early enough so I can still get to bed on time.
Jack Rosen:
But thank you, Michelle. I appreciate that.
Michelle Bishop:
You do intros, you do outros, you help interview guests. Sometimes we make you read the guest bios because me and Stephanie just didn’t prepare, so I feel like at some point I have to let this go. We have to call you a podcast host.
Stephanie Flynt McEben:
Yes, and Jack is always the first one to come up with questions if me and Michelle are like, ugh, blank canvas stares.
Michelle Bishop:
I don’t want to say me and Stephanie never prepare, but…
Stephanie Flynt McEben:
But… Jack holds us together.
Michelle Bishop:
Yeah, yeah. It’s all him.
Stephanie Flynt McEben:
We’re going to miss that.
Jack Rosen:
My job is to wrangle everything together for the podcast.
Stephanie Flynt McEben:
Yeah. If you recorded all of the behind the scenes conversations, I’m pretty sure the podcast would be an entire Taylor Swift album and more.
Michelle Bishop:
Honestly-
Jack Rosen:
It used to, remember the podcast used to be an hour long and after the first year. I just said, “I am not doing that anymore. I am spending like 15 hours a month on this podcast.”
Michelle Bishop:
I’m also pretty sure that’s why no one was listening. Who wants to listen to an hour-long podcast?
Stephanie Flynt McEben:
I don’t know. I listen to hour-long podcasts all the time.
Michelle Bishop:
Oh, I can’t listen to podcasts. I don’t even listen to our podcast. I can’t listen to disembodied voices.
Jack Rosen:
I got to be honest, I still don’t know other than your mom who listens to our podcast.
Michelle Bishop:
I have no idea.
Jack Rosen:
Please, if you listen, write in at [email protected] and tell me why you do. I have never quite been able to figure it out.
Stephanie Flynt McEben:
Oh my gosh. Yes, please. We need encouragement. Or maybe not encouragement, if people are like, oh my gosh, get these ding dongs out of my newsfeed. I don’t know.
Michelle Bishop:
Yes, there’s a good chance. There’s a good chance that could be the responses. It’s been a tough year, guys. Maybe just the good stuff. Thanks. [email protected].
Stephanie Flynt McEben:
Yes. Retweet.
Michelle Bishop:
Also, Jack, if you just do a outtakes and bloopers episode and just go rogue and drop it on your last day so no one can do anything about it, I respect that.
Stephanie Flynt McEben:
I would totally respect that. That would be so fun.
Jack Rosen:
Pretty much-
Michelle Bishop:
How about all the outtakes of Southern Belle Stephanie cussing?
Jack Rosen:
Yeah, yeah.
Stephanie Flynt McEben:
Where are you going to find those?
Michelle Bishop:
Like one time that happened, probably.
Stephanie Flynt McEben:
I try not to curse on the recordings.
Michelle Bishop:
Or in real life, you say chicken nugget.
Stephanie Flynt McEben:
I know, but this year is a change in me. I don’t know. Look, I’m not trying to jack the episode away.
Jack Rosen:
Okay. A second time is lazy. This is like when you and Claire get all that mileage out of, I didn’t see you there.
Stephanie Flynt McEben:
Oh, come on.
Michelle Bishop:
That one never gets old.
Stephanie Flynt McEben:
That one never gets old. Claire and I would bump into each other and we would literally go, “Oh, I didn’t say you there. Oh, neither did I.”
Jack Rosen:
No. You know what? That might be my favorite NDRN story that Claire once did that to me twice in a day though, and the first time I was like, okay, that’s hilarious. And the second time it was still funny, but I’m like, damn, you are using this line every time you bump into someone, aren’t you?
Stephanie Flynt McEben:
Honestly, it’s really funny when you’re out in public and you say it just to random passersby because they don’t know how to take it. Usually there are some folks that are like, “Okay.” And then of course there are the folks that it seems like they’re gobsmacked when they hear, “I didn’t see you there.” And then they realize that it was a blind person who ran into them, and then here comes the end of the world. << It’s the end of the world as we know it, and I feel fine >>
Michelle Bishop:
Oh, R.E.M can sue us.
Stephanie Flynt McEben:
Yeah.
Jack Rosen:
You are really going for it on this one, Stephanie.
Stephanie Flynt McEben:
I am.
Jack Rosen:
I appreciate it. This is the send off I wanted. I can’t wait to be named in the lawsuit.
Stephanie Flynt McEben:
Oh my gosh.
Jack Rosen:
Oh wait. No, crap. Wait. No. I guess it’s okay because I’m doing this still as an NDRN employee, they can’t sue me personally. If I do come back as a guest, it can’t be one where I get sued. That’ll be a problem. Then they can go after me.
Stephanie Flynt McEben:
Fair enough.
Michelle Bishop:
We’re going to have you as a guest and just violate 30 different copyrights on that episode.
Stephanie Flynt McEben:
Just so that we can sing 80s music and Santana. I know Santana is not 80s, but I know that that was something I could never live down.
Michelle Bishop:
It is still too soon to talk about how you thought Smooth Criminal was a Santana song.
Jack Rosen:
Oh my God. That was still, just confidently telling that pun. Folks, if you go back and listen to, I don’t know which episode, but if you, let’s see if this will work. Can you find it? This one. Yes. If you Google Stephanie Flynt, Smoothie Criminal.
Stephanie Flynt McEben:
Wait, what? For real?
Jack Rosen:
Yes.
Michelle Bishop:
You can Google that?
Jack Rosen:
Everything’s transcribed for accessibility, so yeah, Google captures all of it.
Michelle Bishop:
Guys. We made it. We made it.
Stephanie Flynt McEben:
Man.
Jack Rosen:
In fact, if you google Stephanie Flynt, the fifth result is our recent episode. Should Stephanie get a Cat?
Stephanie Flynt McEben:
And the answer is still no. Thank you for checking.
Michelle Bishop:
Oh, that reminds me. Tell Quinn, there’s this stray cat that keeps laying on my patio. I’m going to get a carrier and snag her and bring her over for you guys.
Stephanie Flynt McEben:
Oh gosh.
Michelle Bishop:
Yeah. I got a cat for you.
Stephanie Flynt McEben:
Don’t bring it to Quinn at our happy hour on Tuesday.
Michelle Bishop:
Okay. I’m bringing a cat.
Jack Rosen:
Michelle, you got to bring a cat to the happy hour.
Michelle Bishop:
Right?
Jack Rosen:
Stephanie, I think it’s like a Godfather situation. Stephanie can’t refuse to take that cat on the day of my Goodbye Happy Hour.
Stephanie Flynt McEben:
Well, of course not. That would be inhumane.
Jack Rosen:
Okay. That was a good one. I’ll give you that one.
Michelle Bishop:
That was pretty good. That was pretty good. Can’t lie. I’m impressed today and I kind of like all the puns with Jack’s name. I don’t know why he’s so salty about it. Probably because he’s been hearing them for like 30 years, but whatever.
Stephanie Flynt McEben:
Probably so. I wonder how many puns ChatGPT has. I’ll have to figure that one out and send that to you, y’all. I do have a fun joke.
Michelle Bishop:
I was going to say, how do we end this episode? This has been an episode of nothingness. There has to be a way to wrap it up, but I guess if there’s a joke…
Stephanie Flynt McEben:
There is always a joke. Okay. This is not an original. I actually got this one from Ms. Pencils Away, which if y’all like my jokes, you would absolutely love her. Oh my gosh, she’s so funny. And here we go. So what is Beethoven’s favorite fruit?
Jack Rosen:
What?
Stephanie Flynt McEben:
Y’all got to guess first?
Jack Rosen:
Okay, let’s think Michelle. Beethoven’s favorite fruit. Do you want to hop on? My girlfriend’s sitting next to me and she thinks she figured it out.
Michelle Bishop:
Okay. what is it?
Stephanie Flynt McEben:
Yes.
Speaker 4:
Peaches? Like an ear of something? A slice of something?
Jack Rosen:
No. You’re thinking of…
Speaker 4:
Mozart?
Jack Rosen:
No. You’re thinking of the painter who cut his ear off.
Stephanie Flynt McEben:
No.
Jack Rosen:
Okay. What is Beethoven’s favorite fruit? I am stumped. Michelle, do you have anything here?
Michelle Bishop:
I got nothing.
Stephanie Flynt McEben:
For real? Both of you?
Jack Rosen:
You think…
Michelle Bishop:
Nothing.
Jack Rosen:
Was a conductor, A composer.
Stephanie Flynt McEben:
Okay. Do you want me to put you all out of your misery? Wait, you have a guess?
Jack Rosen:
No, I got nothing. You stumped me.
Michelle Bishop:
Absolutely nothing.
Stephanie Flynt McEben:
Okay. What is Beethoven’s favorite fruit? Ba-na-na-nas, ba-na-nas. No?
Jack Rosen:
Oh, that was good.
Stephanie Flynt McEben:
Did y’all get it?
Michelle Bishop:
I can’t decide if that was amazing or awful.
Jack Rosen:
My girlfriend just walked away, just experiencing too many emotions from that.
Stephanie Flynt McEben:
Oh, I’m sorry.
Michelle Bishop:
You broke her.
Jack Rosen:
I really, really liked that one.
Stephanie Flynt McEben:
I’m glad you like it.
Michelle Bishop:
It’s good. This is Jack’s episode, so it’s good that it was one that brought him joy.
Stephanie Flynt McEben:
That was my hope. I’ve been saving this one for like a month. Because I heard it and I was like, “Ooh.” I’m kind of shocked none of you said kiwi, because that was my first thought.
Jack Rosen:
Why Kiwi?
Michelle Bishop:
Yeah. Why kiwi? What?
Stephanie Flynt McEben:
Ki-wi? Ki, Beethoven.
Michelle Bishop:
That is such a stretch.
Jack Rosen:
I’m not getting it.
Michelle Bishop:
The key, like the key of.
Jack Rosen:
Oh, the key.
Michelle Bishop:
The key, like the key of.
Stephanie Flynt McEben:
Yeah, like a key. A, B, C, D, E, F, G.
Jack Rosen:
Well, I guess I have a joke.
Stephanie Flynt McEben:
Yes. I’m so excited.
Jack Rosen:
I’m thinking how to phrase this. Let me think.
Stephanie Flynt McEben:
Michelle, you got to come up with one too now.
Michelle Bishop:
No, I did my cat tuna fish library joke. And you guys didn’t like it, it was a classic. I used my best material on you guys.
Jack Rosen:
Oh, I think I know.
Stephanie Flynt McEben:
What is it?
Michelle Bishop:
Okay.
Jack Rosen:
What do you call putting out my Goodbye podcast two months after I’ve actually left NDRN? Incredibly on brand for us.
Stephanie Flynt McEben:
It really is though.
Michelle Bishop:
That’s fair.
Jack Rosen:
Yeah. Sorry folks. If you’re hearing this, I’m already gone and I am possibly wondering, oh my God, how am I going to make it through law school? What did I do? Or, I’m having the time of my life. We’ll find out. I’ll be back sometime in the future to let you know.
Michelle Bishop:
So sorry folks. He’s gone. You’re too late to say goodbye to Jack. But, if you want to be the new producer/pro host of our podcast, email [email protected], and we’ll consider your application. Jack, one last time since you’re no longer here. Do you want to tell the people where they can follow us on social?
Jack Rosen:
You can follow us on Facebook, Instagram, LinkedIn, Bluesky, Threads. If anyone actually uses Threads, I don’t know who does, but we’re on it. We’re on Twitter. I’m still calling it Twitter. I think we are maybe going to make a TikTok at some point, but-
Stephanie Flynt McEben:
Oh yeah, don’t we use that?
Jack Rosen:
But that is no longer my problem. So the other member of the comms team, that is their problem. But if we’re on TikTok by the time this episode is out, Alden, if you’re listening, you should add it to the show notes.
Stephanie Flynt McEben:
Alrighty. Well, until next time folks, this is not goodbye. This is see you later.
Michelle Bishop:
For Michelle and Stephanie because Jack’s already gone. Bye guys.
Stephanie Flynt McEben:
Bye.
32 min
August 28, 2025 National Disability Radio: And Then There Were 2
Jack is going off to law school. So the gang sits down to reminisce on his time at NDRN, share a few stories from behind the scenes, and hear a joke from Stephanie that gets a good laugh out of us.
Full transcript available at: https://www.ndrn.org/resource/ndr-august25/
Jack Rosen:
Like we have any sort of agenda for today, so just sort of going to get what I get. Turn that into a podcast, I guess.
Stephanie Flynt McEben:
Sure.
Michelle Bishop:
And that’s different from any other episode because…
Jack Rosen:
It’s not, it genuinely, I guess is not, I suppose at some point we’d have a guest and questions we thought we should ask them.
Michelle Bishop:
Oh.
Stephanie Flynt McEben:
I’m the guest and I have the questions. I don’t know.
Jack Rosen:
I’m pretty sure you’re not the guest.
Michelle Bishop:
It’s fine.
Stephanie Flynt McEben:
I’m pretty sure Jack is the guest.
Jack Rosen:
I’m sort of the guest.
Stephanie Flynt McEben:
What?
Michelle Bishop:
Wait what?
Stephanie Flynt McEben:
This episode is for Jack, isn’t it?
Jack Rosen:
It would be very funny if we just made it the Stephanie episode, even though we’ve done like two of those.
Stephanie Flynt McEben:
No. That would make me feel like such a bad chicken nugget.
Jack Rosen:
Even though we’ve already done-
Stephanie Flynt McEben:
This is all about you.
Michelle Bishop:
We already did a Stephanie wedding episode.
Jack Rosen:
We did a whole one about you getting married.
Stephanie Flynt McEben:
We’ve already done a bunch of episodes about me doing chicken-nuggety things like, come on.
Michelle Bishop:
Oh, that reminds me. My mom wants to hear about the legally blind Uber driver.
Stephanie Flynt McEben:
I forgot that I slipped that into an episode.
Michelle Bishop:
Yeah, she’s still listening and she has some follow-up questions.
Stephanie Flynt McEben:
I love this.
Michelle Bishop:
Well pack might have to address that at some point.
Jack Rosen:
Well, Stephanie, do you want to address it? I mean, let’s give the people what they want, I guess.
Stephanie Flynt McEben:
Yeah, I guess we can give the people what they want.
Michelle Bishop:
Yeah, we have one listener, so we should probably follow up on that for her.
Stephanie Flynt McEben:
Yeah, no, that makes sense. And Carol, thank you so much for being a dedicated, loyal listener to this wonderful podcast. So I will give a slighter Cliff Notes version just so it doesn’t take up the whole hour. So I am waiting for a car outside of, I can’t remember which Metro stop it was, but I had to go get something, and so I just figured I’d take an Uber home from the Metro because that particular Metro was a lot easier to get a car and it would only be a 20-minute ride. Okay, fine. This is what I’ll do. And so I get out of the Metro station, I’m trying to find my driver or whatever, yada, yada, and I can’t even remember his name. Maybe we should just call him Bob for anonymity. I am bad at saying that too. But yeah, so Bob pulls up in some sort of Toyota of some sort and I get in the car and we start driving and I noticed that I’m hearing a lot more horns, but I’m just not thinking about it because it’s rush hour DC traffic.
And then we started, he was like, “You know, I’ll be honest with you, I’m legally blind. I can only see out of one eye.” And I was like, “Oh, okay.” And I’m just trying to think of some of the things that he said, but he said different things that were essentially low vision, blind hacks or what have you. I’m trying to remember the specific hacks, but honestly, when he said, “I’m legally blind,” I was kind of like, “Huh, Jesus, take the wheel. Please get me home safe.” So it was a wild ride. No, that was not an intended pun but we can make it a pun.
Jack Rosen:
So you’re saying he might’ve had limited vision in the one eye?
Stephanie Flynt McEben:
Yeah, potentially. But, he said that he was only legally blind, he was legally blind or totally blind out of one eye, and then he could see out of the other eye just fine.
Jack Rosen:
You don’t sound convinced he could see just fine out of the other eye.
Stephanie Flynt McEben:
I’m not.
I don’t want to say it. Jack has to say it.
Jack Rosen:
I don’t want to say it. Michelle, kick us off as always.
Stephanie Flynt McEben:
Yeah, Michelle, you do that. Yeah.
Michelle Bishop:
Why is it always me? Okay.
Stephanie Flynt McEben:
Because you’re such a good public speaker and I’m really sad right now.
Jack Rosen:
We’re already dealing with enough change. I don’t want to deal with more. Could you please kick us off?
Michelle Bishop:
On this very special episode of National Disability Radio, we say goodbye to our pro-host extraordinaire, Jack Rosen, who is leaving NDRN to go to law school. Yay, Jack. We need an applause. We’ve never had an applause. Can we-
Stephanie Flynt McEben:
I know I keep saying that. Oh my gosh. But seriously, Jack, we’re going to miss you so, so, so much. And you have been an amazing pro-host with the most.
Jack Rosen:
I also have bad news. I definitely did not have enough time left to add in the applause, but…
Stephanie Flynt McEben:
Clap, clap, clap, clap, clap, clap clap, there. I’m trying not to, oh man. That made me sound facetious. I might have to-
Jack Rosen:
No, we’re keeping that in.
Michelle Bishop:
That’s definitely staying in. The part where Stephanie was very salty with you is definitely staying in. This is still the most professional podcast in the business.
Stephanie Flynt McEben:
Yes, it is.
Michelle Bishop:
We pay the big money for the good effects.
Stephanie Flynt McEben:
Yes.
Jack Rosen:
But thank you Michelle. I am sad to be leaving NDRN. It’s been five years here. I started back, for those who don’t know, I started back in 2020. It was actually pretty early COVID. It was May the fourth, because I’ll always remember it’s Star Wars Day.
Michelle Bishop:
Yes. You started-
Stephanie Flynt McEben:
May the fourth be with you.
Jack Rosen:
And it’s funny, NDRN was pretty much the last job interview I had at the start of COVID because nowhere else in the world was hiring. And I interviewed with Michelle and David Hutt and our former ED for a position on the voting team, and I told them at the time like, “Hey, my background is really in politics and comms. I’m a person with a disability. I have ADHD. And I’ve received services throughout my life for it, but I don’t know a ton about the disability rights movement, but I’m willing to learn.” And I got lucky enough that they decided to take a chance on me.
And so for the first two years I was here, I worked for Michelle helping get out the vote in the role that our friend Monica is in now. Then about three years ago, I switched over to the communications team, and one of my first projects there was that we had this podcast they wanted to restart and for, God, yeah, three years now since, we have been putting this out together, meeting once a month, usually meeting twice a month because we’re disorganized and what we do is create a podcast episode and then every time forget to do the intro and outro to it. A little behind the scenes, we have never recorded one of those in the same time we’ve recorded the interview.
Michelle Bishop:
They have to know because sometimes one of us just isn’t .there
Stephanie Flynt McEben:
Or is sick or something. Thank you-
Michelle Bishop:
For part of the episode, how come Stephanie was in the interview, but she wasn’t there when they did the intro?
Stephanie Flynt McEben:
Right. They have questions.
Michelle Bishop:
We’re super good at this.
Stephanie Flynt McEben:
We have all the questions. We are sorry guys. Sometimes we have migraines, sometimes things happen in life.
Michelle Bishop:
Also, Stephanie made us start the podcast.
Stephanie Flynt McEben:
I did not.
Michelle Bishop:
That was 100% Stephanie. I was the only host that was left, Justice and Erica were already gone. And Stephanie was like, “I want to host a podcast. We need to do this podcast.” And then they were like, “I guess Jack has to do it and produce it.”
Stephanie Flynt McEben:
So what you’re saying is that I made Jack and you do this against your will.
Michelle Bishop:
Yes.
Stephanie Flynt McEben:
No.
Jack Rosen:
You definitely added a significant chunk of my workload. This is one of my core responsibilities.
Stephanie Flynt McEben:
I’m sorry.
Michelle Bishop:
We remember it the same way. It was totally Stephanie.
Stephanie Flynt McEben:
It was not.
Jack Rosen:
I kind of think it was you Stephanie.
Stephanie Flynt McEben:
Lies, slander, blasphemy.
Jack Rosen:
I know Michelle did not want to start doing this again.
Michelle Bishop:
Another episode.
Stephanie Flynt McEben:
I kind of made it worth it with my awesome jokes, right, yeah?
Michelle Bishop:
Oh, um…
Stephanie Flynt McEben:
No?
Jack Rosen:
I’ve enjoyed Michelle’s reaction to them a lot. When did we, now I’m wondering when we started adding the puns. I think it was-
Michelle Bishop:
From the beginning.
Jack Rosen:
It wasn’t the first episode. I’m looking right now. It was the second one Stephanie.
Stephanie Flynt McEben:
It only took me one episode.
Jack Rosen:
It took you one episode, and then on the third one we added, I believe Stephanie’s iconic sound.
Stephanie Flynt McEben:
Yes.
Michelle Bishop:
For Stephanie’s Joke of the Month. Everyone else needs to know what we are living with over here with Stephanie and the puns.
Stephanie Flynt McEben:
I’m sorry that you guys have been personally victimized by me for almost four years now.
Jack Rosen:
So yeah, after five years here, I decided it was time to make a little bit of a career change and I decided to go to law school. I decided, I’ll say hopefully a career change, but not necessarily a field change. The law school I picked out is one that has a disability law clinic and a strong focus on public interest. It’s sort of funny. It all comes full circle that I can remember five years ago telling you guys, I don’t know a lot about this, but I’d like the opportunity. And it was something I always vaguely wanted to do, disability rights, but I thought it would be like, oh, after I’ve had a corporate or a politics career, maybe I could give back that way.
And even then it was just vaguely I’ll do something to help people with disabilities, it wasn’t, I want to get into legally-based disability advocacy. And five years later I’m like, oh, when I’m looking at these law schools, I need to find one where I can go further in this field and expand my skill set and be able to do more here. So I don’t know, I’m sad to be leaving. I’m also grateful to you, Michelle, because it definitely changed my career trajectory in a way I never expected. And it is bittersweet. But we have shared probably too much of our personal lives on this podcast for three years now. So we figured really no other way to end it than with the podcast.
Michelle Bishop:
And we are three of the least interesting people.
Stephanie Flynt McEben:
Hey, rude. Everybody thinks I’m interesting.
Michelle Bishop:
No, Jack, we’re going to miss you.
Stephanie Flynt McEben:
Yeah we are.
Michelle Bishop:
It has been a pleasure to work with you all this time. I’m glad we converted you into a full-blown lifelong disability rights advocate.
Stephanie Flynt McEben:
Yes.
Michelle Bishop:
[inaudible 00:10:09] on you when you were young, scrappy and hungry.
Stephanie Flynt McEben:
We did not throw away our shot as NDRN.
Michelle Bishop:
I’m going to quote Hamilton in this episode until we get sued because we have to get sued at least once.
Stephanie Flynt McEben:
We have to get sued for Jack’s last episode.
Michelle Bishop:
We have to get sued at least once before Jack leaves.
Stephanie Flynt McEben:
Lawsuit, lawsuit.
Jack Rosen:
It’s been my entire goal while producing this podcast has been to get us sued. I’ve tried by-
Michelle Bishop:
We’ve tried everything. How many copyrights can we violate?
Jack Rosen:
We’ve tried to get Taylor to sue us. We’ve tried to get the cast of Hamilton. We didn’t do Disney. We’re scared of them.
Stephanie Flynt McEben:
I thought we did do Disney. Remember, we sang Let It Go?
Michelle Bishop:
We sang Let It Go?
Jack Rosen:
You know what, yes, we did do Disney.
Michelle Bishop:
I thought Jay-Z was going to sue us when I didn’t put him in my Top Five on the live episode.
Stephanie Flynt McEben:
Oh, on the live episode. I was like, wait, is going, how is Mississippi, Michelle?
Michelle Bishop:
It’s raining.
Stephanie Flynt McEben:
The rain in Mississippi is annoying. It’s like extra humid.
Michelle Bishop:
Totally. All the time. Oh yeah. It’s humid. I’m not built for this.
Stephanie Flynt McEben:
No, it’s extra humid.
Michelle Bishop:
It’s stormy. The whole time. So I haven’t really gotten to see the glory of your home state.
Stephanie Flynt McEben:
Oh, so sad. Yeah. Nope. You got to go to Keefer’s and Bulldog.
Michelle Bishop:
Okay, I’ll work on that.
Jack Rosen:
What is Bulldog?
Stephanie Flynt McEben:
But Jack, seriously, we are very much going to miss you, and I just can’t thank you enough for being such a good coworker, colleague, friend, and confidant during my time at NDRN. And I know that you won’t be far, but yeah, it’s been amazing working with you. Whether we’re coming up with tweets or I’m bothering you with puns or all that good stuff. Oh, or that one thing that happened last year at annual conference], the getting kicked out of the bar thing, which probably should be.
Michelle Bishop:
That’s why-
Jack Rosen:
In our defense, and we’re not going to say which bar, they were being kind of ableist.
Stephanie Flynt McEben:
They were totally being ableist.
Jack Rosen:
Can we tell the story on the pod?
Michelle Bishop:
Don’t name the bar. That’s definitely how-
Jack Rosen:
We’re not going to name the bar.
Stephanie Flynt McEben:
Is it bad that I can’t even remember what the name of that bar was?
Michelle Bishop:
Where was I even when this was happening?
Jack Rosen:
I think you must have been asleep. Wait, we can’t say where we were either, Stephanie.
Michelle Bishop:
Did you just call me old in the middle of a podcast episode. Where was I when you guys were at the bar?
Stephanie Flynt McEben:
Asleep, Michelle, you’re ancient.
Jack Rosen:
You were invited. Yeah, but I think we were there at like 11:30 at night.
Michelle Bishop:
Okay. That’s worse. Could you tell people it was like 2:00 A.M. or something?
Jack Rosen:
Yeah. Stephanie and I were out, we were at the club. It was 3:00 A.M.
Stephanie Flynt McEben:
Everybody in the club getting, okay, I’m done. Anyway, it was 3:00 A.M. We were at the club in Nowhereville.
Michelle Bishop:
It’s 11:30, you know your Gen X bedtime does not allow you to be up past 10:00.
Stephanie Flynt McEben:
Low key. I go to bed at nine o’clock on the rag.
Michelle Bishop:
We need older people on this podcast.
Stephanie Flynt McEben:
Oh, come on. I go to bed at nine o’clock. I’m basically an oldish person now.
Jack Rosen:
I’m pretty sure your new producer is going to be my age, I’m pretty sure.
Michelle Bishop:
But if we’re getting the producer, I think we’re getting, she is a Swifty, so now it’s just going to be an all Swifty crew. So we look forward to the next episode of this podcast where it’s all about people with disabilities who love Taylor Swift.
Jack Rosen:
I may have warned her when I was telling her how to produce the podcast. I’m like, so for the first 20 minutes they usually talk about Taylor and then I turn the recording on after, so I don’t have to go through all of that because eventually we’ll just get to the podcast. But you got to let them go through talking about Taylor Swift first.
Stephanie Flynt McEben:
<< Don’t say that I didn’t warn you >>
Michelle Bishop:
Nice.
Stephanie Flynt McEben:
I’m over here-
Michelle Bishop:
You don’t need to hear all my theories about when Rep TV was going to be dropped since it’s apparently never coming. So that’s fine. I have a little embarrassment.
Jack Rosen:
You have been predicting it for years.
Michelle Bishop:
I mean, some of the evidence was convincing, okay. Never mind. It’s fine. It’s fine. It’s fine.
Jack Rosen:
Is she not now that she owns her catalog? I thought she would anyway.
Michelle Bishop:
She never actually recorded it, so…
Jack Rosen:
Really?
Michelle Bishop:
Yeah, she’s only recorded like a quarter of it, so I’m thinking it’s a no. There’s going to be Vault Tracks though, Stephanie Vault Tracks. We still have things to look forward to.
Stephanie Flynt McEben:
I love the Vault Tracks, honestly.
Michelle Bishop:
Right?
Stephanie Flynt McEben:
Nothing New is like my jam.
Michelle Bishop:
You know I saw that Live with Phoebe Bridgers.
Stephanie Flynt McEben:
I am-
Michelle Bishop:
Oh, this is already transitioning into a Taylor Swift podcast and Jack is still here.
Stephanie Flynt McEben:
Right? God bless it. I’m still so jealous that you got to see Phoebe and Taylor and you got to see Taylor three times.
Michelle Bishop:
Okay. Jack Antonoff also came out that night and Ice Spice. Anyway.
Stephanie Flynt McEben:
Hair flip.
Michelle Bishop:
We should probably talk about Jack or at least disability rights or something.
Jack Rosen:
At least the podcast, maybe?
Michelle Bishop:
The podcast.
Stephanie Flynt McEben:
No. Let’s talk about Jack. This is the Jack episode.
Jack Rosen:
Okay. I guess we’ll do a couple stories from my time at NDRN.
Michelle Bishop:
Yeah, we need your favorite stories from your time at NDRN. Yes.
Stephanie Flynt McEben:
Don’t let either of us jack the episode from you.
Michelle Bishop:
Nothing illegal.
Jack Rosen:
Oh, come on Stephanie, that one was lazy.
Michelle Bishop:
Stephanie, did you really just say that?
Jack Rosen:
I have heard that-
Stephanie Flynt McEben:
Don’t let any of us jack the, oh, come on. That was fun.
Jack Rosen:
Not giving you that one.
Michelle Bishop:
I don’t don’t know if I’m disappointed or proud of that one.
Stephanie Flynt McEben:
You should be disproud-pointed.
Michelle Bishop:
It’s like 50/50. Anyway Jack, no illegal stories, please.
Jack Rosen:
No.
Stephanie Flynt McEben:
We don’t want to get sued for that reason.
Jack Rosen:
Okay.
Michelle Bishop:
Yeah, there’s certain things we want to be sued for and certain things we should avoid.
Stephanie Flynt McEben:
What are some of the funniest stories from your time at NDRN?
Jack Rosen:
Let’s think. I mean, yeah, as we alluded to, there was the time, Stephanie and I, at one of our annual conferences, we were out at an undisclosed location. It was very late. Michelle was in fact there earlier partying it up, but then she was like, “Hey, it’s 3:45 A.M. I got to get out of here before sunrise.”
Michelle Bishop:
Thank you.
Jack Rosen:
Yes. But no, they double charged Stephanie at this bar. They were claiming the credit card transaction wouldn’t go through, it was bad. They just kept trying to talk to me and show me the receipt and I’m like, A, I’m not dealing with this. You guys figure it out, and B, you are just being wildly ableist to us right now.
Stephanie Flynt McEben:
So ridiculous.
Jack Rosen:
But let’s see, what else? That one was wild just because I did not ever think in my years of working here, I would be not quite asked to leave, but certainly not asked to come back.
Michelle Bishop:
You did also ride in a self-driving car.
Jack Rosen:
We did-
Stephanie Flynt McEben:
Oh yeah.
Jack Rosen:
We did record an episode from a self-driving car. That was when Raquel was on the pod. It was me, her and Marcia.
Stephanie Flynt McEben:
I think I was also leaving a bar if I’m correct.
Jack Rosen:
That one was. That was after when we all went out to a Mexican restaurant at the Phoenix conference and Marcia just, we ordered it and Marcia just sort of volunteered. She’s like, “Okay, I wanna come along and see this.” I’m like, “Okay, but you’re on the podcast.”
Stephanie Flynt McEben:
That is the trade-off.
Jack Rosen:
Yes.
Michelle Bishop:
I also wasn’t there. I’m never there when these things happen.
Jack Rosen:
I don’t know why you weren’t there for that.
Michelle Bishop:
Am I always sleeping?
Stephanie Flynt McEben:
No.
Jack Rosen:
I feel like both of you weren’t there for the self-driving car one.
Stephanie Flynt McEben:
Yeah, I wasn’t there because I had, we were doing a public policy team dinner, so that’s why I wasn’t there.
Michelle Bishop:
It was supposed to be for Stephanie, because-
Stephanie Flynt McEben:
I know and I never got to ride-
Michelle Bishop:
Because it was supposed to be about self-driving cars for blind people.
Stephanie Flynt McEben:
I know. I never got to ride in it.
Jack Rosen:
Stephanie, they’re coming to DC.
Stephanie Flynt McEben:
I know. I’m so excited. Quinn on the other hand is not.
Michelle Bishop:
I’m pretty sure I saw one already.
Stephanie Flynt McEben:
Yeah, they were doing test laps around our building.
Jack Rosen:
Yeah, they’re testing a ton out in my neighborhood. I don’t fully trust them, but I’m not going to lie, they’re cheap and convenient and I’ve had some bad Uber drivers in DC.
Stephanie Flynt McEben:
Oh Lord boy, do we.
Jack Rosen:
Let’s see. What’s another appropriate NDRN story we could tell?
Stephanie Flynt McEben:
Appropriate.
Jack Rosen:
Really appropriate.
Stephanie Flynt McEben:
Any stories from traveling for the documentary?
Michelle Bishop:
That’s why I’m not here for any of them. I might only be there for the stories that are inappropriate.
Jack Rosen:
I mean, with the documentary, this was funny. So we’re there and we’re getting towards the last day of our travel in, so yeah, we were in South Carolina. It was me, Monica, and a third person who helped make the documentary who’s a little more private, but shout out them. They helped a ton with it and taught me a lot about filming.
But anyway, so the three of us, we discovered early on that week that our last night there Katt Williams was going to perform and we wanted to go. We all wanted to go really bad, but as the director, I had to keep being the bad guy and being like, “Okay, Monica, we will, if we don’t have any interviews scheduled that day, and we have all these people we need to interview before we can leave South Carolina, we can’t blow any off to,” she didn’t want to blow any off, but I had to be, as I often am at NDRN the last few years, the person who says no to things, and I don’t know if that’s feasible.
Stephanie Flynt McEben:
You guys don’t don’t know what kind of a bummer Jack is on a regular basis, y’all.
Jack Rosen:
And finally we got the last interview scheduled and we were so hyped. We all just went out to see Katt Williams together and it was the perfect way to end having worked together and been on the road for two weeks, traveling, filming, doing 10-hour days interviewing people.
Stephanie Flynt McEben:
And it probably saved your friendship with Monica.
Jack Rosen:
Oh yeah. Even if she’ll never forgive me for the fact I didn’t invite her to a music festival with my friends. That’s a joke.
Michelle Bishop:
She’s still trying to get into that with you though, right?
Jack Rosen:
What?
Stephanie Flynt McEben:
Daily.
Michelle Bishop:
Into that festival, or is this a different one?
Jack Rosen:
She what?
Stephanie Flynt McEben:
It’s a different one. There’s been two incidents.
Michelle Bishop:
There’s been two. Okay.
Jack Rosen:
Both times that I went to a music festival in Los Angeles I did not invite her to. It’s okay. You know I love you Monica, and we’ll go to the next one.
Michelle Bishop:
I do have a very special announcement to make for the After Hours Jack’s Goodbye episode. I have to say, you’ve been our producer for a couple of years now. We have frequently referred to as our pro host since you’re our producer, you’re our Gelman, if you will. Our producer who gets to talk during the episodes, not so much a silent partner as you first began. And so I want to say before you go, Jack, you are a host of the podcast.
Stephanie Flynt McEben:
See, finally.
Jack Rosen:
I’m genuinely a little touched.
Stephanie Flynt McEben:
We finally, we finally got you to admit it, Michelle.
Jack Rosen:
Finally.
Michelle Bishop:
That’s a very bad hatchet.
Jack Rosen:
After hosting episodes you haven’t been on.
Stephanie Flynt McEben:
Wait, Jack, are you crying?
Jack Rosen:
No.
Michelle Bishop:
No, but that’s how we’re going to tell the story, and then Jack cried. Also, the people need to know that we don’t actually hate each other.
Jack Rosen:
No. Michelle is like my mentor, she’s a friend, and she has been a mentor to me as I’ve entered a career in disability rights.
Michelle Bishop:
I’m like the sarcastic persona on this show, and I’m pretty sure everyone thinks that I’m mean, and I hate you guys, but we actually all get along quite well despite the fact that I’m apparently never there when anyone goes to the bar. But other than that…
Stephanie Flynt McEben:
We’ll make sure you’re there for the next one.
Michelle Bishop:
Thank you. I’ll probably be too tired, but I appreciate the thought.
Jack Rosen:
It’ll be funny. You’ll just miss my goodbye Happy Hour.
Michelle Bishop:
Oh.
Stephanie Flynt McEben:
I was going to say, are you going to miss that? Hopefully no.
Michelle Bishop:
No, I’m going to be there. I am, but that’s happy hour. That’s early enough so I can still get to bed on time.
Jack Rosen:
But thank you, Michelle. I appreciate that.
Michelle Bishop:
You do intros, you do outros, you help interview guests. Sometimes we make you read the guest bios because me and Stephanie just didn’t prepare, so I feel like at some point I have to let this go. We have to call you a podcast host.
Stephanie Flynt McEben:
Yes, and Jack is always the first one to come up with questions if me and Michelle are like, ugh, blank canvas stares.
Michelle Bishop:
I don’t want to say me and Stephanie never prepare, but…
Stephanie Flynt McEben:
But… Jack holds us together.
Michelle Bishop:
Yeah, yeah. It’s all him.
Stephanie Flynt McEben:
We’re going to miss that.
Jack Rosen:
My job is to wrangle everything together for the podcast.
Stephanie Flynt McEben:
Yeah. If you recorded all of the behind the scenes conversations, I’m pretty sure the podcast would be an entire Taylor Swift album and more.
Michelle Bishop:
Honestly-
Jack Rosen:
It used to, remember the podcast used to be an hour long and after the first year. I just said, “I am not doing that anymore. I am spending like 15 hours a month on this podcast.”
Michelle Bishop:
I’m also pretty sure that’s why no one was listening. Who wants to listen to an hour-long podcast?
Stephanie Flynt McEben:
I don’t know. I listen to hour-long podcasts all the time.
Michelle Bishop:
Oh, I can’t listen to podcasts. I don’t even listen to our podcast. I can’t listen to disembodied voices.
Jack Rosen:
I got to be honest, I still don’t know other than your mom who listens to our podcast.
Michelle Bishop:
I have no idea.
Jack Rosen:
Please, if you listen, write in at [email protected] and tell me why you do. I have never quite been able to figure it out.
Stephanie Flynt McEben:
Oh my gosh. Yes, please. We need encouragement. Or maybe not encouragement, if people are like, oh my gosh, get these ding dongs out of my newsfeed. I don’t know.
Michelle Bishop:
Yes, there’s a good chance. There’s a good chance that could be the responses. It’s been a tough year, guys. Maybe just the good stuff. Thanks. [email protected].
Stephanie Flynt McEben:
Yes. Retweet.
Michelle Bishop:
Also, Jack, if you just do a outtakes and bloopers episode and just go rogue and drop it on your last day so no one can do anything about it, I respect that.
Stephanie Flynt McEben:
I would totally respect that. That would be so fun.
Jack Rosen:
Pretty much-
Michelle Bishop:
How about all the outtakes of Southern Belle Stephanie cussing?
Jack Rosen:
Yeah, yeah.
Stephanie Flynt McEben:
Where are you going to find those?
Michelle Bishop:
Like one time that happened, probably.
Stephanie Flynt McEben:
I try not to curse on the recordings.
Michelle Bishop:
Or in real life, you say chicken nugget.
Stephanie Flynt McEben:
I know, but this year is a change in me. I don’t know. Look, I’m not trying to jack the episode away.
Jack Rosen:
Okay. A second time is lazy. This is like when you and Claire get all that mileage out of, I didn’t see you there.
Stephanie Flynt McEben:
Oh, come on.
Michelle Bishop:
That one never gets old.
Stephanie Flynt McEben:
That one never gets old. Claire and I would bump into each other and we would literally go, “Oh, I didn’t say you there. Oh, neither did I.”
Jack Rosen:
No. You know what? That might be my favorite NDRN story that Claire once did that to me twice in a day though, and the first time I was like, okay, that’s hilarious. And the second time it was still funny, but I’m like, damn, you are using this line every time you bump into someone, aren’t you?
Stephanie Flynt McEben:
Honestly, it’s really funny when you’re out in public and you say it just to random passersby because they don’t know how to take it. Usually there are some folks that are like, “Okay.” And then of course there are the folks that it seems like they’re gobsmacked when they hear, “I didn’t see you there.” And then they realize that it was a blind person who ran into them, and then here comes the end of the world. << It’s the end of the world as we know it, and I feel fine >>
Michelle Bishop:
Oh, R.E.M can sue us.
Stephanie Flynt McEben:
Yeah.
Jack Rosen:
You are really going for it on this one, Stephanie.
Stephanie Flynt McEben:
I am.
Jack Rosen:
I appreciate it. This is the send off I wanted. I can’t wait to be named in the lawsuit.
Stephanie Flynt McEben:
Oh my gosh.
Jack Rosen:
Oh wait. No, crap. Wait. No. I guess it’s okay because I’m doing this still as an NDRN employee, they can’t sue me personally. If I do come back as a guest, it can’t be one where I get sued. That’ll be a problem. Then they can go after me.
Stephanie Flynt McEben:
Fair enough.
Michelle Bishop:
We’re going to have you as a guest and just violate 30 different copyrights on that episode.
Stephanie Flynt McEben:
Just so that we can sing 80s music and Santana. I know Santana is not 80s, but I know that that was something I could never live down.
Michelle Bishop:
It is still too soon to talk about how you thought Smooth Criminal was a Santana song.
Jack Rosen:
Oh my God. That was still, just confidently telling that pun. Folks, if you go back and listen to, I don’t know which episode, but if you, let’s see if this will work. Can you find it? This one. Yes. If you Google Stephanie Flynt, Smoothie Criminal.
Stephanie Flynt McEben:
Wait, what? For real?
Jack Rosen:
Yes.
Michelle Bishop:
You can Google that?
Jack Rosen:
Everything’s transcribed for accessibility, so yeah, Google captures all of it.
Michelle Bishop:
Guys. We made it. We made it.
Stephanie Flynt McEben:
Man.
Jack Rosen:
In fact, if you google Stephanie Flynt, the fifth result is our recent episode. Should Stephanie get a Cat?
Stephanie Flynt McEben:
And the answer is still no. Thank you for checking.
Michelle Bishop:
Oh, that reminds me. Tell Quinn, there’s this stray cat that keeps laying on my patio. I’m going to get a carrier and snag her and bring her over for you guys.
Stephanie Flynt McEben:
Oh gosh.
Michelle Bishop:
Yeah. I got a cat for you.
Stephanie Flynt McEben:
Don’t bring it to Quinn at our happy hour on Tuesday.
Michelle Bishop:
Okay. I’m bringing a cat.
Jack Rosen:
Michelle, you got to bring a cat to the happy hour.
Michelle Bishop:
Right?
Jack Rosen:
Stephanie, I think it’s like a Godfather situation. Stephanie can’t refuse to take that cat on the day of my Goodbye Happy Hour.
Stephanie Flynt McEben:
Well, of course not. That would be inhumane.
Jack Rosen:
Okay. That was a good one. I’ll give you that one.
Michelle Bishop:
That was pretty good. That was pretty good. Can’t lie. I’m impressed today and I kind of like all the puns with Jack’s name. I don’t know why he’s so salty about it. Probably because he’s been hearing them for like 30 years, but whatever.
Stephanie Flynt McEben:
Probably so. I wonder how many puns ChatGPT has. I’ll have to figure that one out and send that to you, y’all. I do have a fun joke.
Michelle Bishop:
I was going to say, how do we end this episode? This has been an episode of nothingness. There has to be a way to wrap it up, but I guess if there’s a joke…
Stephanie Flynt McEben:
There is always a joke. Okay. This is not an original. I actually got this one from Ms. Pencils Away, which if y’all like my jokes, you would absolutely love her. Oh my gosh, she’s so funny. And here we go. So what is Beethoven’s favorite fruit?
Jack Rosen:
What?
Stephanie Flynt McEben:
Y’all got to guess first?
Jack Rosen:
Okay, let’s think Michelle. Beethoven’s favorite fruit. Do you want to hop on? My girlfriend’s sitting next to me and she thinks she figured it out.
Michelle Bishop:
Okay. what is it?
Stephanie Flynt McEben:
Yes.
Speaker 4:
Peaches? Like an ear of something? A slice of something?
Jack Rosen:
No. You’re thinking of…
Speaker 4:
Mozart?
Jack Rosen:
No. You’re thinking of the painter who cut his ear off.
Stephanie Flynt McEben:
No.
Jack Rosen:
Okay. What is Beethoven’s favorite fruit? I am stumped. Michelle, do you have anything here?
Michelle Bishop:
I got nothing.
Stephanie Flynt McEben:
For real? Both of you?
Jack Rosen:
You think…
Michelle Bishop:
Nothing.
Jack Rosen:
Was a conductor, A composer.
Stephanie Flynt McEben:
Okay. Do you want me to put you all out of your misery? Wait, you have a guess?
Jack Rosen:
No, I got nothing. You stumped me.
Michelle Bishop:
Absolutely nothing.
Stephanie Flynt McEben:
Okay. What is Beethoven’s favorite fruit? Ba-na-na-nas, ba-na-nas. No?
Jack Rosen:
Oh, that was good.
Stephanie Flynt McEben:
Did y’all get it?
Michelle Bishop:
I can’t decide if that was amazing or awful.
Jack Rosen:
My girlfriend just walked away, just experiencing too many emotions from that.
Stephanie Flynt McEben:
Oh, I’m sorry.
Michelle Bishop:
You broke her.
Jack Rosen:
I really, really liked that one.
Stephanie Flynt McEben:
I’m glad you like it.
Michelle Bishop:
It’s good. This is Jack’s episode, so it’s good that it was one that brought him joy.
Stephanie Flynt McEben:
That was my hope. I’ve been saving this one for like a month. Because I heard it and I was like, “Ooh.” I’m kind of shocked none of you said kiwi, because that was my first thought.
Jack Rosen:
Why Kiwi?
Michelle Bishop:
Yeah. Why kiwi? What?
Stephanie Flynt McEben:
Ki-wi? Ki, Beethoven.
Michelle Bishop:
That is such a stretch.
Jack Rosen:
I’m not getting it.
Michelle Bishop:
The key, like the key of.
Jack Rosen:
Oh, the key.
Michelle Bishop:
The key, like the key of.
Stephanie Flynt McEben:
Yeah, like a key. A, B, C, D, E, F, G.
Jack Rosen:
Well, I guess I have a joke.
Stephanie Flynt McEben:
Yes. I’m so excited.
Jack Rosen:
I’m thinking how to phrase this. Let me think.
Stephanie Flynt McEben:
Michelle, you got to come up with one too now.
Michelle Bishop:
No, I did my cat tuna fish library joke. And you guys didn’t like it, it was a classic. I used my best material on you guys.
Jack Rosen:
Oh, I think I know.
Stephanie Flynt McEben:
What is it?
Michelle Bishop:
Okay.
Jack Rosen:
What do you call putting out my Goodbye podcast two months after I’ve actually left NDRN? Incredibly on brand for us.
Stephanie Flynt McEben:
It really is though.
Michelle Bishop:
That’s fair.
Jack Rosen:
Yeah. Sorry folks. If you’re hearing this, I’m already gone and I am possibly wondering, oh my God, how am I going to make it through law school? What did I do? Or, I’m having the time of my life. We’ll find out. I’ll be back sometime in the future to let you know.
Michelle Bishop:
So sorry folks. He’s gone. You’re too late to say goodbye to Jack. But, if you want to be the new producer/pro host of our podcast, email [email protected], and we’ll consider your application. Jack, one last time since you’re no longer here. Do you want to tell the people where they can follow us on social?
Jack Rosen:
You can follow us on Facebook, Instagram, LinkedIn, Bluesky, Threads. If anyone actually uses Threads, I don’t know who does, but we’re on it. We’re on Twitter. I’m still calling it Twitter. I think we are maybe going to make a TikTok at some point, but-
Stephanie Flynt McEben:
Oh yeah, don’t we use that?
Jack Rosen:
But that is no longer my problem. So the other member of the comms team, that is their problem. But if we’re on TikTok by the time this episode is out, Alden, if you’re listening, you should add it to the show notes.
Stephanie Flynt McEben:
Alrighty. Well, until next time folks, this is not goodbye. This is see you later.
Michelle Bishop:
For Michelle and Stephanie because Jack’s already gone. Bye guys.
Stephanie Flynt McEben:
Bye.
0 min
July 24, 2025 National Disability Radio: Senator Tom Harkin
We wrap up our series on the battle for the passage of the ADA with none other than Senator Tom Harkin. Senator Harkin was the lead sponsor of the ADA in the Senate and has spent his career being a steadfast ally to the disability community. In this interview we talk to him about what that was like, where we need to go from here, and he even stumps us with a bit of disability rights trivia.
Full transcript available at: https://www.ndrn.org/resource/ndr-harkin/
Michelle Bishop:
Welcome back to another episode of National Disability Radio. This is the final in our series on the anniversary of the ADA. So before we jump into a very special guest that we have for you this episode, I am one of your podcast hosts, Michelle Bishop, the voter access and engagement manager at NDRN.
Stephanie Flynt McEben:
And I’m Stephanie Flynt McEben, public policy analyst here at NDRN, and another host, or one of our other hosts, for our podcast today.
Michelle Bishop:
Okay. Clearly taking his side, Stephanie. Clearly taking his side.
Stephanie Flynt McEben:
Okay. Okay. But Jack has proven that he is worthy of host,
Michelle Bishop:
Producer and pro host extraordinaire, please introduce yourself.
Jack Rosen:
Thank you, Stephanie. I appreciate the support. Hi, producer and host, Jack Rosen, here. Really excited about today’s episode. This guest has been at the top of our wish list for a while now, and we are so thrilled to have him on. So I suppose we want to just get into it. Michelle, why don’t you tell the folks that we have on today?
Michelle Bishop:
We’re really excited today to be talking to the honorable Senator Tom Harkin, who was so instrumental in so much of the early disability rights movement and passage of the ADA. In 1974, Tom Harkin was elected to Congress from Iowa’s 5th Congressional District. In 1984, after serving 10 years in the US House of Representatives, Senator Harkin was elected to the Senate and reelected in 1990, 1996, 2002, and 2008. He retired from the US Senate in January of 2015.
I use the term retired loosely. He is still very active in the movement. As a young senator, Tom was tapped by Senator Ted Kennedy to craft legislation to protect the civil rights of millions of Americans with physical and mental disabilities. He knew firsthand about the challenges facing people with disabilities from his late brother Frank, who was deaf from an early age. What emerged from that process would later become his signature legislative achievement, the Americans with Disabilities Act.
In September 2009, following the death of Senator Ted Kennedy, Senator Harkin became chairman of the Senate Health Education, Labor and Pensions, or as we know it, HELP Committee. Senator Harkin believed that to serve in this capacity was to carry on the legacy which helped lead to the passage of the Affordable Care Act. In 2015, Senator Harkin and Ruth Harkin establish the Harkin Institute for Public Policy and Citizen Engagement at Drake University in Des Moines, Iowa to inform citizens, inspire creative cooperation, and catalyze change on issues of social justice, fairness, and opportunity. The institute works to improve the lives of all Americans by giving policymakers access to high quality information and engaging citizens as active participants in the formation of public policy. Senator Harkin, thank you so much for joining us today.
Jack Rosen:
So we’re sitting here today with Senator Tom Harkin for our series commemorating the 35th Anniversary of the passage of the ADA. This is Producer Jack Rosen. I am joined by my co-hosts, Michelle Bishop and Stephanie Flynt. And to kick things off, we wanted to ask you, one thing we’ve found when talking to some of the folks who were involved in the passage of the ADA is that they recalled that was quite a fight to get people with HIV, AIDS and mental illness, as well as substance use disorders covered at the time, especially being 1990 and there was a lot of stigmatization of people with HIV, AIDS. Could you talk a little bit about that fight and why it was important for you to make sure those groups were included?
Senator Harkin:
Well, yes, because we didn’t want to leave any element of a disability group out of the coverage of the bill, want to be comprehensive. You start carving out one group, then there’s somebody else will carve out somebody else and the thing falls apart. The HIV, AIDS thing came up because there was so much misinformation about AIDS and how people got it. And a lot of it, let’s face it, was based on homophobia at that time. And we had some purveyors in the country and in the Senate of that kind of discrimination. Former Senator Jesse Helms of North Carolina is predominant among that.
And so they tried to do whatever they could to carve out that portion of our populace. Well, we were successful in the Senate in keeping it out, but the House at the last minute added what was called the Chapman Amendment. Chapman was a congressman from Texas. I think that’s right, from Texas. And at the last minute they added the Chapman Amendment to preclude coverage of the ADA for anybody with HIV or AIDS. It wasn’t just AIDS, it was HIV too, a huge populace.
Well, as we pointed out at the time, everyone thought well, you only got HIV if you were practicing unsafe, same-sex. But we knew from medical studies and stuff that that just wasn’t so, it was absolutely not so at all. Well, Chapman Amendment came on at the last minute. Now keep this in mind, it’s a little bit in the weeds here on legislation. But we had passed our bill in September of 1989. It went to the House, got stuck in the House all winter until we had what was called the Capitol Crawl in March. After that, it began to get loosened up and we got it through the House, but not until the last minute the Chapman Amendment was at.
And so when we went to conference… Okay, so the Senate had one bill, the House had another bill. When we went to conference, the Senate voted to instruct conferees as did the house, to instruct conferees to accept the Chapman Amendment. Well, of course, I’m the head of the subcommittee. I’m the person leading the charge on this and negotiating with the house. And we met with the disability community. And basically, I’ll tell you, the disability committee held together. They said, “If they’re out, we’re out. We won’t have a bill.” They had worked for so long and so hard to get this done.
Well, so here’s what happened. We enlisted a person who had been sort of with us all along, but sort of dragged along kicking and screaming, and that was Senator Orrin Hatch of Utah. And finally, the disability community came to him and some people he knew in Utah and said, “Look, we can’t afford to let this bill die. We got to save this bill.” And so a few people came to meet with Senator Hatch and convinced him to have a substitute for the Chapman Amendment that basically said that in disregard of HIV, AIDS, et cetera, that we would rely upon the latest and best medical and scientific studies and results in order to determine the further course of action.
Anyway, it was just… got rid of the Chapman Amendment and substituted this language of we’ll take the latest scientific… And we sold it on that basis. We sold it to the Senate, even though they instructed them to accept the Chapman Amendment. We went back to them and said, “Look, this is a great compromise. Who can argue that we shouldn’t use the best scientific and medical information and data?” And that’s what we did, and that was the end of it. And so then the House went back and they passed it and it came back to the Senate and we substituted our bill, because we had some different things in it. So we took my bill, the bill we’d drafted and made it the final bill and sent it to the White House. That’s a long story, but it was very involved.
Michelle Bishop:
It’s actually one of my favorite stories, though, I have to say, Senator, about the passage of the ADA. It was such a moment in time and the way that the disability rights community really stood together-
Senator Harkin:
Yeah, you did.
Michelle Bishop:
… in a business where it would be very easy to say, “Okay, we’ll cut these folks out and we’ll get this for the rest of us.” The way the community really stood together and the way that you released stood your ground as well for what was right for people with disabilities.
Senator Harkin:
Well, I’ll tell you a little story that happened before, before the Chapman Amendment, but it was right about that same time. We still had some people in the disability community that were just… They wanted this, they wanted that, and I understood that. So I got Pat Wright and some others too from California. Who am I thinking of? I just lost the name in my… Anyway, Pat Wright was there from Oakland. Who am I thinking of? The Ed Roberts Center?
Michelle Bishop:
Yes. It’s actually the original independent living center in Berkeley, the Ed Roberts and the Rolling Quads and…
Senator Harkin:
What’s it called? It was called… There’s just been a disconnect between my brain and my vocal cords.
Michelle Bishop:
Sir, that happens to me frequently.
Stephanie Flynt McEben:
Yeah, same.
Senator Harkin:
Okay, back up. So Pat Wright, who had been with us from the very beginning, fighting for this from the outside, so I got Pat and I said, “Look, bring together as many in the disability community you can, and we’re going to meet in that big hearing room in the Dirksen building that I had jurisdiction over.” And it was like five o’clock in the afternoon and it was packed. Everyone was there. National Federation of the Blind, National Association of the Deaf, Cerebral Palsy, on and on and on and on and on and on. They were all there. And I had Bobby Silverstein with me. And Bobby was my staff director who really, really probably single-handedly was more responsible for the ADA than any other single person. So I said to Bobby, I said, “Look, get all these people together.” I said, “I’m going to lay the law down to them.” He said, “Okay.”
He didn’t really know what I was going to do. So we got all these people in the room and I said, “Look, we’ve been through a long fight. We’ve held together, but there’s some people that are holding out that haven’t quite got on board yet.” I said, “Look, I’m about to bring this bell out on the floor, but,” I said, “I’m not going to do it unless you all agree. Unless everybody here agrees and they’re not going to be sniping in the back about this isn’t in and that is.” I said, “Now look, it’s a little after five o’clock, I have to go attend to something. I’m going to leave Bobby Silverstein here in charge. And I’m going to come back, I’ll be back in about an hour and we’ll see. If you agree on what I’ve just laid out, I’ll be on the floor tomorrow with the bill. If you don’t agree, we’ll all go home and that’s the end of it. So I’ll see you in about an hour.” And I walked out. I left Bobby holding the bag.
Stephanie Flynt McEben:
Oh my God.
Senator Harkin:
But he was good. He was great. And so I did. I came back in about an hour and one by one, all these different groups were on board. “No, we’re not going to try to do anything in the back round. Yes, we’re…” And that was it. And then I got to take the bill on the floor.
Michelle Bishop:
That’s incredible. Well, our thanks to Bobby as well then for that work.
Senator Harkin:
Right.
Michelle Bishop:
Before we switched the mic on we were talking about all the unsung heroes of the ADA, and especially the people who do the drafting. Right?
Senator Harkin:
Yeah.
Michelle Bishop:
Somebody sits down and writes the language.
Senator Harkin:
Right.
Michelle Bishop:
And one of the things that strikes me about the ADA, in addition to being this really powerful moment in time for our movement, is that as folks who work in the disability rights movement now, the ADA itself is such an incredible piece of legislation. It was really built on, in my mind, a very clear record of discrimination against people with disabilities. And the bill itself I think is clear and specific and detailed in what it asks of us. It doesn’t just say, “You can’t discriminate. It has to be accessible.” It tells you what that means.
It charges agencies like the Access Board with creating regulations that are incredibly clear. And so for those of us who are doing the work these days, who rely so much on everything that the ADA lays out, and it’s certainly in an era of courts that really maybe look to limit its power somewhat, to me, the clarity and the specificity of the ADA is something that is really unique for a landmark piece of civil rights legislation. And I was wondering if at the time that you were doing this work, did you know how important that was and how unique this bill was? Or what is it to you that makes the ADA stand the test of time?
Senator Harkin:
Yes, we knew. We knew we were doing something that was both kind of profound, but also that we put in language that we thought would tell the courts what we really wanted to do. And of course, as you know, much of the provisions of the ADA are based on Section 504 of the Rehabilitation Act of 1973. Is that right?
Stephanie Flynt McEben:
Yes.
Senator Harkin:
Yes. 1973, right. And so we lifted a lot of language from that. And we had the help of person who had been involved with 504. Well, I’m sorry, I just lost a name. I see him in my mind’s eye. I mean, he’s still alive. I mean like me, we’re old and we can’t remember our names. So he was still there, and he came in and was very helpful on the language and putting it together with Bobby Silverstein, who was my staffer, a lawyer. Heifelblum, another lawyer, she was at Georgetown at the time. Arlene Meyerson, another lawyer out in San Francisco or Oakland there. DREDF, that’s the name of it. The Disability Rights and Education Defense Fund.
Michelle Bishop:
Yes.
Stephanie Flynt McEben:
Yes.
Senator Harkin:
That’s who Pat Wright was with, and that was sort of our organization on the outside.
Michelle Bishop:
I used to work for Robert Funk, who’s a disability rights attorney back at the time, who was part of the founding of DREDF as well. Yeah.
Senator Harkin:
But, he was with DREDF.
Michelle Bishop:
Yeah, yeah.
Senator Harkin:
So, yes, we knew we wanted to be more specific in the language, and we thought we were pretty specific. Again, we had different people meet with different senators and different staffs. And well, it worked out fine. Now, again, I must tell you that it came to quite a surprise to us in 1999, 9 years later, when the Supreme Court decided those three cases, we call it the Sutton Trilogy. There were three cases that decided in one day that just tore apart the ADA in terms of employment.
We were, I thought, quite specific in our findings. I remember I was at the Supreme Court the day they handed down the decision. I was there with Bob Dole, who was also a big supporter of ours and getting the ADA through. And I remember we walked out and met the press, and I remember Bob Dole saying, “Well, they said we didn’t have enough…” I think it was Scalia, maybe I forget who it was, said, well, we didn’t have enough data to support this or something. And Dole said, “Well…” Now again, don’t hold me to this figure. But he said, “We had like 200 specific instances of these violations. Now I wish they had’ve told us do they need 210? Do they need 220?”
Stephanie Flynt McEben:
227.
Senator Harkin:
So he was really poking fun at the Supreme Court. Well, because of that decision, it held up employment. Because the employers really didn’t know what to do and the people with disabilities who wanted to be employed didn’t really know what to do. I can get into that more if you want, but it’s kind of in the weeds. But it had to do with whether you self-identified as someone with a disability. If you did, were you still covered by the ADA?
It took us another almost nine years to get it corrected, and we worked through those years. And the second Bush came to office, he didn’t hold us up, but everybody got involved in 9/11 and the war in Iraq, and just one thing after another. But finally in 2008, his last year in office, we got it through, and that was the ADA Act Amendments of 2008, which told the Supreme Court, “Here’s what we meet,” basically.
Michelle Bishop:
Right.
Senator Harkin:
And so we redrafted some portions of the ADA to make it quite clear what it is we meant. And since that time, we’ve had a clear course on this whole idea of employment. That’s one of the reasons why employment was set back so far. I mean, we went for… Well, you figure that was 2009, that’d be 19 years? 2008, so 18 years. Am I right? Yes, that’s’ right, 2008.
Michelle Bishop:
Yes. I had to think about it too.
Senator Harkin:
So we basically went 18 years without really having a clear delineation and upholding of court decisions on employment. Just held us. We did all right on transportation. We did okay on an independent living with the Olmstead Decision and other things like that, but employment was held up back… And in 18… that was ’08, by the time we got the new rules drafted, you’re talking about 2010. So it set us back about 20 years on employment.
Michelle Bishop:
I know Stephanie asked something she wants to ask you about, but I got to jump in real quick. I just wanted to say quickly, I’m so glad you mentioned Senator Dole because we often find that really champions of disability rights issues come from both sides of the aisle.
Senator Harkin:
That’s true.
Michelle Bishop:
That it’s not so much a partisan issue as it is if you are a person with a disability or you love someone with a disability, you see how it impacts people’s lives and you just get it.
Senator Harkin:
Right.
Michelle Bishop:
And that’s been, to me, something that just makes disability rights such a unique space to work in.
Senator Harkin:
Yeah.
Stephanie Flynt McEben:
And just to add on to that, disability is the characteristic that affects one in four Americans. And also anyone can become a member of the disability community at any time. It intersects with every single minority group. I know I’m preaching to the choir here, but that’s definitely something.
Senator Harkin:
Right, yeah. Yes, exactly right. You can become a member of the disability community at any point in time. And as some of us grow older and we can’t hear worth a darn, now we’re finding out that we have to lean on a lot of things for closed captioning and things like that.
Stephanie Flynt McEben:
Yeah. No, for sure. For sure.
Senator Harkin:
I have to give you another little bit of a thing. I know you’re talking about the ADA.
Michelle Bishop:
Yeah.
Senator Harkin:
Before the ADA passed, I got another bill through. Now people always say I’m the author of the ADA and all that, but I don’t say that. People say that, but I don’t say that. I always say the author of the ADA were the many thousands of people with disabilities that marched, that laid under the wheels of the Greyhound buses, that got arrested and thrown in jail, and then the staff and everybody. Did I have a hand in it? Yeah. I’m the lead sponsor, so I was the person that brought it through legislatively and got it passed. Okay, fine. I accept that. But there was one bill that I was the author of and got it through my committee and got it through the Senate and the House and got it signed by the president, that really changed a lot. And no one knows I ever did it. It was called the Television Decoder and Circuitry Act. I bet you’ve never heard of it?
Michelle Bishop:
No.
Jack Rosen:
I don’t think I have.
Michelle Bishop:
I was like, “He’s not going to stump us. We do this for a living.”
Stephanie Flynt McEben:
Yes.
Michelle Bishop:
And then you did.
Senator Harkin:
You can look it up. I forget the public law number of it. But the Television Decoder and Circuitry Act, I had hearings on it. Here’s what happened. I had a brother who’s deaf, and so I got involved in the late ’70s and early ’80s in establishing the National Captioning Institute out in Alexandria, Virginia. And while I was only peripheral to the other aspect of the television stations’ networks making agreements to have certain programs captioned, in order to get the captions you had to buy a box. There was a big set top box, like a VCR you put on your television. You hooked it up.
Stephanie Flynt McEben:
Oh wow.
Senator Harkin:
And if the program had been re-recorded, then you could see the captions. Well, so I got the first TV decoder like that, was delivered to Jimmy Carter in the White House by me and Senator Jennings Randolph of West Virginia. Okay, so I got my brother one and put on the TV out in Iowa, and he could now watch programs. Some of the early programs like the Ed Sullivan Show. It was always done before an audience, but not live. It was an audience and then you would see it on television. And then there were other programs that were done and then shown later, but not in front of an audience. Okay?
Michelle Bishop:
Mm-hmm.
Senator Harkin:
You could get those captioned by the National Captioning Institute. So my brother got this box and he started watching this, fine. Along about the late ’80s, I’m now in the Senate and I get a visit paid by an individual who said, “We now are developing these computer chips. And all that stuff in that big box you have that Sears Roebuck sold…” You can only buy it from Sears, and they agreed to sell it at cost, and it was expensive, $279 at that time.
Stephanie Flynt McEben:
Wow.
Jack Rosen:
Oh wow.
Michelle Bishop:
Wow.
Senator Harkin:
That was expensive. So they said, “All this in it, we can put it on a computer chip like size of your thumbnail.” I said, “Really?” “Yeah.” I said, “Well, I got to find out more about it.” I had hearings from my disability policies, my subcommittee. So I had hearings on this. And I’m just a freshman senator, but Kennedy had agreed to give me this disability subcommittee called the Subcommittee on the Handicapped. So I had these hearings. I brought in the TV manufacturers. I remember it was Motorola, Sylvania, some of the other ones, maybe… There were a number of US manufacturers of TVs. I don’t remember if Sony… I’d have to go back and check. They may not even have been around at that time. I don’t know.
Michelle Bishop:
No idea. That’s a good question.
Senator Harkin:
So my ask was, “I understand we can…” “Yeah. Well…” They looked at, “Yeah, you could put all that in a TV set.” But here was the catch, but it’s going to cost anywhere from 100 to $200 more per TV to do that. Well, so I checked with my staff and they said, “You can’t get a bill through that’s going to increase the cost of a TV set by a couple of hundred dollars.” So I called in this friend of mine in the chip business. I said, “Well, is it really going to cost that much?” And he said, “Yes, if you make 10 of them or if you make a hundred of them, but if you were to make millions of them, why the cost would almost be nothing.” It’s like a light bulb went off in my head.
So I drafted a bill to mandate that every television set sold in America, not made here, sold in America that had a size 13-inch screen or bigger… Now, don’t ask me… There was some technical problem in doing it smaller than that with the captions.
Stephanie Flynt McEben:
Interesting
Senator Harkin:
Every television set sold in America size 13-inch screen or… had to have embedded in the television set itself this decoding chip, and I got it through.
Michelle Bishop:
Can I also thank you as someone who watches everything with the captions on.
Senator Harkin:
I know.
Michelle Bishop:
I don’t even have hearing loss. I watch everything with the captions on.
Stephanie Flynt McEben:
My spouse is the same way.
Senator Harkin:
Well, we got it through, and we had a phase in period of several years. And what happened is J.W. Marriott Hotel… There was someone in his family who was disabled. I had a conversation with him at that time with J.W., Bill Marriott, I think. Was it Bill? I forget, one of them. Because they decided, not that they had to, it wasn’t part of the law, but they decided to take out all their TVs and all their hotels and replace them with TVs with these computer chips and use it as a marketing tool.
Michelle Bishop:
Wow. Awesome. That’s a great idea.
Senator Harkin:
Which they did. And of course, once they did that, then Holiday Inn and a Hilton and everybody… So there was this big rush to buy all these TV sets with these computers chips in them. And that happened. And years later, I remember I had a hearing on this and asked what the additional cost was for the chip. It’s not even factored in the price.
Michelle Bishop:
Wow.
Senator Harkin:
It’s just part of the internal operations. All the other things they’ve done with smart TVs and all, well, yeah, that’s factored in the price. But the computer chip isn’t, is so that’s why you have a remote and you can get the closed captions and all that kind of stuff. So there you go.
Stephanie Flynt McEben:
Really? That’s amazing.
Senator Harkin:
There you go, long story.
Michelle Bishop:
Okay. We led you all around. We led you all around, Stephanie, but I actually know you wanted to ask about technology anyway, so it might be a nice segue.
Stephanie Flynt McEben:
Yeah, I was going to say that is a really good segue. Talking a lot about technology and the ADA and the efforts around the captioning devices. The ADA was written in a different era in regards to technology, and of course addresses the technology of its time and how those things go about. And of course, in 1990, I’m sure we couldn’t have imagined a world with smartphones and Amazon Prime-
Senator Harkin:
No.
Stephanie Flynt McEben:
… all of these things, the AI, all of this technology that’s around. So how do you think that the ADA needs to be adapted to today’s tech?
Senator Harkin:
Well, my short answer it has been adapted. I mean, the language and the way we drafted it, I think has been very well incorporated in the new technological world. I mean, I may not see what is happening there that I don’t know about. Maybe you do, I don’t know. But I think technologically we have pretty much… I think the ADA pretty much has stood the test of the time on that. I’m trying to think of some instances where we had problems. Do you know of any?
Stephanie Flynt McEben:
Yeah. So I think something that I’ve heard in various circles and in doing this work, it’s true that the ADA is enforceable when it comes to technology. But because of the fact that technology has just continued to evolve more and more and more over time, there’s been various guidance and that sort of thing that’s been issued in order to keep up with the times. And so I think that that’s kind of with the evolution of technology in mind, if that makes sense.
Michelle Bishop:
And we came to meet you today by using a smartphone app to call a car to come pick us up, which-
Stephanie Flynt McEben:
I feel like in the ’90s would you-
Michelle Bishop:
… that is a different world.
Stephanie Flynt McEben:
Would people have done that in 1990, requested a random car to come and pick you up versus a cab company?
Michelle Bishop:
But it opens up a whole new industry of people’s private cars or private homes being kind of a part of business now in a way.
Senator Harkin:
Now, you’ve jogged my thinking a little bit here. There has been over the last few years, a focus on making the ADA adaptable to programming and to software development and software design. It’s not so much just the hardware, but the software needs to be accessible for people with different accessibility problems.
Stephanie Flynt McEben:
Yeah, absolutely.
Senator Harkin:
And so we have been working with the Accessibility Board, I think it’s called.
Stephanie Flynt McEben:
The Access Board?
Senator Harkin:
And with getting some national standards on making sure that software at the very beginning [inaudible 00:31:02] incorporates within the software accessibility standards for people who have a learning disability, for people who may have an intellectual disability, for a person with cerebral palsy, for example, who has a hard time navigating boards and things like that and needs a different type of a device. For example, software that will allow a person with a pointer… They put it on their head. Maybe you’ve heard about these?
Stephanie Flynt McEben:
Yes. Yeah.
Senator Harkin:
They’re fantastic, but the software has to… All of the software that you might access that way has to be accessible for that kind of technology.
Stephanie Flynt McEben:
Right, right. Yeah.
Senator Harkin:
So that has been something that obviously we didn’t think about in ’90, obviously.
Stephanie Flynt McEben:
Well, of course, I mean, there was no way to know, right?
Senator Harkin:
But through court cases, we have developed the law that’s pretty good on this. I often liken it to this, that when our framers drafted the Constitution, they drafted… As you know, one one of the provisions of the Constitution as a provision against illegal searches and seizures. Your house is your castle. They can’t just go into your house and search through your drawers and stuff like that without a court…
Michelle Bishop:
Without a warrant.
Senator Harkin:
… warrant for something. Well, television or telephones weren’t around then. So when telephones came in later, could they tap your phone, huh? Well, it wasn’t in the Constitution.
Michelle Bishop:
Right, yeah.
Senator Harkin:
But there was a court case that said, “Well…” It’s the same thing. It’s basically the same. And so that has evolved. So that same kind of court adapting what we wanted to protect or do in the beginning changed by technology, they just adapted it to the new technology. That’s our hope on these court cases that a lot of them… aside from the Sutton Trilogy in 1999. But once we corrected it, that was it, it’s worked ever since. The court had a very… And maybe we weren’t clear enough. I thought we were, but maybe we weren’t.
Stephanie Flynt McEben:
No, I think that that makes a whole lot of sense. And I just thank you so much for your leadership on that. And, again, there’s just no way that we could have known what the technological future held.
Senator Harkin:
No.
Stephanie Flynt McEben:
And I think that the link to the Constitution and the phone tapping is a really good example. So thank you for sharing that.
Senator Harkin:
Right. Well, the next big thing is AI.
Michelle Bishop:
Right, right.
Stephanie Flynt McEben:
Mm-hmm.
Senator Harkin:
Now, is AI going to be accessible and adaptable for all persons with disabilities? Well, tomorrow there’s going to be a presentation by Beacon College on their use of AI for all their kids with disabilities. It’s pretty darn interesting.
Stephanie Flynt McEben:
Interesting.
Senator Harkin:
I had a preview of it because I visited the school. But AI could be very, very helpful. But, again, is it designed and are the algorithms that incorporate it encompassing a person with a learning disability or a physical disability, cerebral palsy or anything like that, a person with blindness or deafness or whatever? Are those algorithms going to be able to pick up on that and make sure whatever the AI you’re using or trying to use understands it has to be presented in a certain way, a certain way that’s accessible.
Stephanie Flynt McEben:
Fully accessible to all people. I think that that just speaks to the timelessness of the ADA too.
Senator Harkin:
You know you’re right. I got to tell you, sometimes I’m amazed at how adaptable the ADA and the language we used… I don’t know that we really thought that much about, “Oh, we’ve got to anticipate the future and this and that.” I mean, a little bit of that came around, but there was no such thing as a smartphone.
Stephanie Flynt McEben:
Right.
Michelle Bishop:
Right.
Senator Harkin:
There’s no such thing as smart TVs or nothing like that.
Michelle Bishop:
And if we had guessed in 1990, we probably would’ve been thinking about the flying cars from the Jetsons and not smartphones. Right? We probably would’ve gotten it wrong.
Senator Harkin:
That’s right. That’s right. But, yeah, I can’t say that we were prescient in some way. I don’t think so. I think we were just trying to nail it down as best we could.
Stephanie Flynt McEben:
Of course. Yeah.
Senator Harkin:
Yeah.
Jack Rosen:
I think that sort of transitions nicely. You mentioned the presentation that’s going to take place tomorrow. And obviously the fight for equality for people with disabilities didn’t end at the ADA and your work in this space hasn’t ended. So I was just wondering if you could tell us a little bit about the Harkin International Disability Employment Summit and the work you’re doing here today?
Senator Harkin:
Well, yes, the International Disability Employment Summit, we started in 2016. I retired in 2015, January of 2015, and we had started the Harkin Institute at Drake University. And as 2015 went through… Again, I made sure when we drafted the ADA, we put in the titles that Title 1, the first one is employment because I always felt that was sort of key, jobs, employment. Well, we’d gone through all that 20 years with the Supreme Court’s decisions, 2010, it’s now 2014, and we just had not hardly made a ripple in employment. So I wanted to focus on that.
So the first summit was in December of 2016. Yes, December. Either late November, early December of 2016, and that was it. We wanted to do it internationally because we also wanted to rely on the CRPD, the Convention on the Rights of Persons with Disabilities for other countries. And so that was it. That was it. There’s a lot on disability rights you can focus on, and we do some of that at the institute, but I wanted this to be focused on increasing employment in competitive integrated employment for persons with disabilities. And as I said today in my opening, I said, “We laid a marker down.” At that time I said, “In 10 years, I want to double the rate of employment for specific… I mean for you. I mean, if you have a business and you employ two people with disabilities, make it a goal that in 10 years you’re going to have four people. If you’re a big company and you got 2% of your employees are people with disabilities, make it 4% in 10 years.” It’s not a heavy lift, but I wanted to keep making progress forward.
And so that’s still our goal to keep doubling the rate of employment among small businesses, against all businesses. And that’s what we’ve tried to do, to bring these… And what are the best practices? What are their hurdles? What are the problems? What are some people doing that are unique? We just had a presentation just before I came here for this podcast by Apple. I didn’t realize Apple was doing what it’s doing. It’s fantastic on how they’re getting their suppliers, not just Apple, but their suppliers to do more hiring of persons with disabilities. Wow.
See, so there’s a lot of these kind of things happening out there. And that’s what we’re focused on, employment. And we’ve had two foreign engagements. We did one in Paris, France, which was well attended by African countries and some Mideast, European. And then we did the one in Belfast, and then in 2023 we were set up to do one in Amman, Jordan. Prince Murad has been to all of our summits and he wanted to host one in Jordan, which we thought would be great. But we had to cancel it at the last minute because of problems in the Mideast and travel and things like that. So we missed in ’23 then we’re back here in ’24 and we don’t know where we’re going to be in ’25 yet. We’re looking some different places.
Michelle Bishop:
If we can trouble you with one more question.
Senator Harkin:
Yeah.
Michelle Bishop:
Well, first, I assume you use the word retirement loosely. Sounds like you’re still fairly busy.
Senator Harkin:
I am. I do, yes.
Michelle Bishop:
We’ve talked so much about the history of the disability rights movement, and I’m wondering what you think when you look towards the future, what are maybe some new challenges on the horizon as well as do you see any new disability rights champions who are ready to pick up the torch and continue this work?
Senator Harkin:
First question, there’s one thing that I’ve just been trying to get done and haven’t, it’s been a great failure and that is to get housing built in America that’s accessible. Do you realize we now have a whole industry in America, they come to see me, a whole industry that will fix up your house when you get older so you can stay at home? Why the hell didn’t we build it that way in the first place? It’s much cheaper when you do it that way.
Michelle Bishop:
Absolutely.
Senator Harkin:
I have been proposing for some time now, but I just can’t get anyone to do it, and it’s this, what is one of the biggest factors in homeownership in America? The biggest single factor, aside from price of course, the biggest single factor is the fact that you can deduct from your income taxes the interest paid on the mortgage that you have. You buy a hundred thousand dollars house, you put $10,000 down, the other $90,000 you’ve mortgaged. And what is up front? The interest. If you ever look at the diagrams, you’re paying just interest and interest and interest for years and years for 20 or a 30-year mortgage, and finally at the end you start paying on the principal. All that interest is tax-deductible. That’s a federal law.
What I’ve been advocating is that for you, for an individual, to get that tax deductibility to purchase a home, that home must meet accessibility standards. Then builders will start building houses where people will buy because if they don’t, they won’t be able to deduct their mortgage payments. So I’ve been trying to get this change made to get housing that is accessible from the very beginning, housing, apartments, condominiums. And as we know, the added expense is not that much in the beginning. It’s when you come back later and try to redo it, that’s what costs money. To me. This is one of the last great frontiers in America.
I spoke with a young woman not too long ago in Washington D.C., she’s a professional person. Told me it took her almost three years to find an apartment in D.C. that was accessible for her. She uses a wheelchair and some other devices. She just couldn’t find it. I mean, she just couldn’t find what she wanted. What do I think? The number of those were so little. You know?
Michelle Bishop:
Mm-hmm.
Senator Harkin:
Anyway, so that’s one that I just I don’t know why. And here, Biden and Kamala Harris came out, “Oh, they’re going to have all this new money. We’re going to build all this low-income housing and stuff.” Not one word about we’re going to build low-income housing and it’s going to be accessible to all people with disabilities. Nothing. Nothing. I mean, I don’t know how I get through on some of this stuff. As you can see, it just frustrates me.
Anyway, as you can see, I still think there are some barriers, a lot of barriers that we’ve got to overcome in that way. Transportation, we’re finally getting airlines… And this is a kudos to the Biden administration and to Pete Buttigieg. They finally did get some standards out for seating in airplanes for people with disabilities. Daniel Van Sant, who you’ve met here, who’s the head of our disabilities…
We’re losing Bob Casey. But, yes, there are Maggie Hassan, Senator Maggie Hassan, Tammy Duckworth from Illinois. Those are two big champions right there.
Michelle Bishop:
Senator, you gave us so much of your time today, we appreciate it.
Jack Rosen:
Thank you so much.
Stephanie Flynt McEben:
Thank you so much.
Senator Harkin:
I forgot, I got to get my rear end out of here.
Speaker 5:
That’s why I’m here.
Michelle Bishop:
You gave us so much of your time, we appreciate it so much.
Stephanie Flynt McEben:
No, it’s totally fine. Thank you so much, Senator.
Senator Harkin:
Thank you. Thank you. Thank you. See you, bye.
Jack Rosen:
Thank you, Jack.
Speaker 5:
Your dog is beautiful.
Stephanie Flynt McEben:
Thank you.
Jack Rosen:
Wow, that was so cool. I cannot believe we got to speak with Senator Harkin. I cannot believe we got to speak with him for that long. I’m not even sure what to say. It’s so exciting that we got to speak with him and hear about what it was like as a legislator while these fights were going on to pass the ADA, and to just learn a bit more history about it wasn’t… As much as we focus on the ADA, there is other legislation that is that people are always… We often hear, “Isn’t that an ADA violation?” Sometimes it is, but as he pointed out, sometimes there are other disability rights laws that are protecting people.
Stephanie Flynt McEben:
Right? I mean, honestly, all I can say really is… Sorry. No, Jack. I could not agree more. It was an incredibly moving interview. He is incredibly down to earth, and I genuinely am so grateful for the time that he gave us. And he’s just such a down to earth guy. I really enjoyed talking with him and learning the history and just hearing his perspective on everything going on, ways that we can improve the ADA today and just in general the advocacy that it took on both sides to make the ADA what it is.
Michelle Bishop:
Truly. Senator Harkin, thank you so much for letting us crash the Harkin Institute this year, for all the time you’re willing to sit down and talk with us about your achievements, for everything you’ve done for the disability rights movement, and most of all for laughing at all of our bad jokes.
Stephanie Flynt McEben:
Yes. And speaking of jokes…
Michelle Bishop:
Oh, we know you have one, Stephanie.
Stephanie Flynt McEben:
Yes, I do. And it’s actually kind of on theme for this episode, so I’m kind of proud of myself. Anyway, what did the ramp say to the stairs?
Jack Rosen:
What did the ramp say to the stairs?
Michelle Bishop:
What did the ramp say to the stairs?
Stephanie Flynt McEben:
I don’t know, but you guys have to guess. I do know, but…
Michelle Bishop:
We had one easy one recently.
Jack Rosen:
Right? I think I got it.
Michelle Bishop:
Go on.
Jack Rosen:
I’ve got you covered.
Stephanie Flynt McEben:
Nope, that’s a good one, but no.
Michelle Bishop:
That’s a good answer. Okay. What is it?
Stephanie Flynt McEben:
Step aside. Get it?
Michelle Bishop:
Oh, yeah. No, I got it.
Jack Rosen:
Hey, that’s an appropriate one.
Stephanie Flynt McEben:
It really is though. I was so proud of it.
Michelle Bishop:
It was. That is a great joke for the anniversary of the ADA, and I hope that Senator Harkin is laughing at that one very hard.
Stephanie Flynt McEben:
I feel like he would.
Michelle Bishop:
Unlike me and Jack. Thank you everyone for joining us for our series on the anniversary of the ADA. We were really excited for the ADA’s birthday this year, and it was amazing to get the opportunity to talk to several people who were just instrumental in the drafting and the passage of the ADA who shared their experiences with us and talked about the future of the movement. We appreciate it so much. Jack, tell the people where they can find us on social media.
Jack Rosen:
You can find us on Facebook, Instagram, LinkedIn, Twitter, Bluesky, Threads. I’m forgetting one, aren’t I? Facebook, Instagram, LinkedIn, Twitter, Bluesky, Threads. Oh, yeah, we also have a YouTube channel, follow us there.
Michelle Bishop:
Not TikTok.
Jack Rosen:
Not TikTok.
Michelle Bishop:
Okay, got it.
Jack Rosen:
And as always, you can email us at [email protected]. Until next time folks.
Stephanie Flynt McEben:
Bye.
48 min
July 17, 2025 National Disability Radio: Jim Dickson
On part two of our series commemorating the fight for the passage of the ADA, we have on long time activist Jim Dickson. Jim talks with us about the challenges they faced in getting the ADA passed, what changes he’d still like to see, and surprises us with a fun story about a former guest and friend of the podcast.

Full transcript available at: https://www.ndrn.org/resource/ndr-jim-dickson/
Jack Rosen:
You know, Michelle, we feel like this part of your life is more mysterious. What was living in St. Louis like?
Okay, started that wrong. I’m trying to just get you to give us some St. Louis trivia. Mysterious was the wrong choice of word there.
Michelle Bishop:
Mysterious? Is it the biscuit?
Jack Rosen:
I wanted you to talk about the spaghetti and chili. That’s what I’m trying to get to, and I didn’t know how to get there.
Michelle Bishop:
I don’t know anything about that. I don’t even know what you’re referring to.
I do know there’s definitely fish fries every Friday, and it’s always fried catfish with a side of spaghetti, if that’s what you’re thinking of.
And we invented toasted ravioli, and most things that matter, like ice cream cones were invented at the 1904 World’s Fair in St. Louis.
And there’s St. Louis-style pizza, but it doesn’t have mozzarella on it. It has Provel cheese, which is I’m pretty sure only exists in St. Louis.
And pretty much everyone has some sort of connection to Nelly or Nelly’s mom. That’s about it.
Jack Rosen:
You know what? I was thinking of Cincinnati.
Michelle Bishop:
Gotcha. I gave all that, and you were thinking of something from Cincinnati.
Stephanie Flynt McEben:
Is Cincinnati famous for its pizza?
Michelle Bishop:
Is Cincinnati famous for-
Stephanie Flynt McEben:
For anything? No offense to any Cincinnatians.
Michelle Bishop:
Shout-out to Disability Rights Ohio. We love you.
Stephanie Flynt McEben:
Yas.
Michelle Bishop:
Our bad. Our bad. I was just in Cleveland. It was cool.
Do you not know Midwestern cities, Jack? Can you not tell them apart? Is it all the same to you once you get past like Buffalo?
Jack Rosen:
Well, then there’s Los Angeles on the other side of the country.
Michelle Bishop:
Hi. Welcome back to National Disability Radio. I’m Michelle Bishop, one of your co-hosts and the voter access and engagement manager at NDRN.
Stephanie Flynt McEben:
And I’m Stephanie Flynt McEben, public policy analyst, and also one of your hosts for this wonderful podcast here at NDRN.
Michelle Bishop:
And then we also have a producer, who’s just a producer. Why don’t you tell them hi, our producer?
Jack Rosen:
Hi, Jack Rosen here, one third of the podcasting team, as you know, a host.
Michelle, do you want to tell the people who we have on today?
Michelle Bishop:
Yes. This is a continuation of our series on the anniversary of the ADA, and allow me first to say, Go ADA. It’s your birthday. Go ADA. It’s your birthday.
Okay. I’ve been wanting to get that out since the last episode for the ADA, so thank you for humoring me.
So this episode, we have Jim Dickson. He has over 30 years of experience with nonpartisan voter engagement work, particularly in the disability community. He served as the co-chair of the Civic Engagement and Voting Rights Committee for the National Council on Independent Living.
He is a former vice president for organizing and civic engagement at AAPD, the American Association of People with Disabilities, where he led AAPD’s Nonpartisan Disability Vote Project, a coalition of 36 national disability organizations, whose mission was to close the political participation gap for people with disabilities, focusing on nonpartisan voter registration, education and get out the vote.
He actually played a central role, along with the leadership conference on Civil and Human Rights, in passing the Help America Vote Act of 2002, and he was part of the leadership team, which passed the National Voter Registration Act, which you probably call Motor Voter.
He’s the past chair of the board of advisors of the United States Election Assistance Commission, and prior to joining AAPD, where he was for a long time leading this work, Jim organized the campaign to place a statue of President Roosevelt in his wheelchair at the FDR Memorial and the National Mall in Washington, DC.
He has a long history of grassroots organizing with multi-issue organizations all over the country. I know definitely in Rhode Island, Connecticut and also in California, so that covers three states Jack has probably heard of. And with the support of the Sierra Club, he organized the first grassroots congressional mobilization for the environmental movement, which resulted in the passage of the first Clean Air Act.
So Jim has a long history of civil rights work and grassroots organizing, but if you know him, you probably know him for his leadership with the disability vote work. That’s how I know Jim, who’s actually been a mentor of mine for a long time. Welcome him to the podcast.
Jim Dickson:
So Justin Dart really used his appointment to the President’s Committee on Employment of People with Disabilities to lay the groundwork for the ADA.
He and Yoshiko, his wife, went around to every state, held a public meeting and prior to going, they sent out emails saying, “Sit down for a few minutes and write down all of the experiences of discrimination that you experienced.” I don’t remember whether he said in the last week or the last month.
And then in every state, they held a hearing, and people stood up and said, “I experienced discrimination because I got in an elevator, and there was no braille on the buttons, and I had to go to four floors before I got to the right floor.” That was turned into a report to Congress, and that report was used for Congress to hold hearings.
The hearings were fascinating, very important. This whole process, which took years, was really the first time that anything approaching the cross-disability community existed. The blind, we were off doing our stuff. The ARC was doing their stuff. There were a few organizations like Nickel and NDRN who were cross-disability and active in more than one disability silo. But the struggle to pass the ADA really eliminated those silos.
And it was really interesting both first for me, because I had never thought that the lack of a braille button in an elevator was an act of discrimination. I just thought it was a pain in the ass. And many of us began, because of the way Justin and Yoshiko framed the discussion, we really began to think for the first time in terms of civil rights, is this a discriminatory structure or situation statement?
And some people got that very quickly. But I think for much of the community, not the advocates, not the lobbyists, but for the rank and file, I would say it took a good year for that perception of accesses to civil rights to really be absorbed emotionally and intellectually by much of the rank and file.
Simultaneous with Justin and Yoshiko’s going around the country and collecting stories and giving a report, Evan Kemp and his partner played bridge with George Bush and Barbara Bush. They were social peers, class, old aristocratic families. And Evan got, between the shuffling, would talk about discrimination that he felt and experienced. And Evan graduated fourth in his class from Harvard Law, at the time walked with crutches and did not get one single offer from a major law firm to come and go to work, totally because using crutches, he was perceived as somehow less competent.
Pat Wright with CCD, Consortium for Citizens with Disabilities, formed a strategy committee. And again, there would be 20 to 30 people at every meeting representing 20 to 30 different organizations, different segments of the community.
And in the initial stages, there was a lot of talk about if you weren’t blind, the fact that there wasn’t braille on the buttons or an audio announcement on the elevator never occurred to you. So there was a lot of sharing of this experience and recognition that it was discriminatory and a violation of civil rights.
And I can’t emphasize enough that the concept of it being a civil rights violation was just stunning and extremely powerful prior to this whole conversation. Those of us who had jobs, careers, when we faced a barrier, our attitude was, “I got to find a workaround. I got to fix this. I got to find a way for me to operate in light of this barrier.” Very, very few of us talked or thought in terms of this barrier is a violation of my civil rights. So the most exciting thing about the process of passing the ADA was meeting with people with different disabilities, sharing our stories.
And while there would be meetings in DC, led by Pat Wright and Curt Decker, the then director of NDRN, was very important in the whole process, there were meetings with members at the grassroots level, in the beginning mostly with the staff and a few places with the members. I won’t go into the lobbying strategy and the fact that the committee, the Congress, divided the bill up and had it heard in four different committees, two in the House, two in the Senate, that required a lot of fancy footwork.
What was a very important strategic decisions that, in retrospect some of us regretted that we made, was a decision that we had to exempt the churches because the conversation went something like, “We’re picking a fight with business, we’re picking a fight with state and local governments, with school boards. We can’t fight everybody. Let’s not take the churches on, too.”
And that was thought through, essentially agreed to. I was one of the minor voices who said, “Yeah, we should not take the churches on.” In retrospect, I’m not sure that was the right decision, but it was made. I guess I’ll move to the signing.
Michelle Bishop:
Before you do that, Jim, can I ask you a couple of questions? This is fascinating, like this just has my gears turning.
Well, first and foremost, the decision not to take on the churches. And now so many churches are polling places, and you and I spent our whole careers, Jim, being tortured by inaccessible polling places in churches.
But I was thinking about, it’s really fascinating to me that a lot of people with disabilities didn’t think of some of those things that had always been a pain in the butt as a violation of your civil rights, and how much that has changed since the ADA has become law. That really that framework for looking at the world is this isn’t just a pain in the butt thing that I have to deal with. This is a violation of my rights. We could’ve have built this differently from the start, and I think that that’s really interesting.
Jim Dickson:
Yeah, and it was really important. It was an emotion. And I want to emphasize that wasn’t just a change in the way of thinking. It was a change in the way we felt about ourselves. It was a very emotional and, therefore, difficult change. But once people felt “You’re screwing me, and it’s not right, and it’s a violation of my civil rights,” that psychic, emotional, almost spiritual change was really essential to the passage of the ADA.
There was lots of fancy lobbying footwork. It was people would list members of Congress, and it was okay because just about every member of Congress, somewhere in their life circle at home, had a relationship with somebody with a disability. And a lot of the lobbying was built around which member has a connection with which part of the disability community, and then getting the grassroots in that state or congressional district to be the ones who went in.
So a lot of the initial contacts at the grassroots level wasn’t a broad coalition, though that happened in some places. It was more somebody known to the member where there was a relationship and a conversation about barriers equal civil rights violations. And they were, in general, I sat in on a couple of those conversations and I heard members say, “You know, I never thought of it that way, but I can see that.”
Michelle Bishop:
I feel like some of that is still so true today. It’s people who have a personal connection to disability who get it.
Jim Dickson:
Yep.
Michelle Bishop:
I think that’s really still true of disability champions and the work that we’re doing.
But I wanted to ask you about one more thing. This is something I’ve always heard through legend about the fight for the ADA.
You talked early on about that kind of breaking down of the divisions and there being like a disability rights movement, a community that’s kind of cross-disability. And I had always heard that it took several years to get the ADA a passed, which is not uncommon, especially for a really big, really important bill. But that there were points in the negotiation process where if people with disabilities had agreed to exclude some of the more, at the time, controversial folks, like people in recovery from drug addiction and particularly in the late ’80s, people who are HIV positive, that there might have been quicker passage of the bill.
I’ve always been told, through legend, people with disabilities refuse to do that and said it has to be all of us, and the bill eventually passed with all of us. Can you talk a little bit about that?
Jim Dickson:
Yes. Addiction was not universally seen as a disability. We saw it that way, but not everybody in the community did. And there were lots of conversations about, “Well, somebody’s a drunk, do they need to be protected, too?”
There was also a lot of less frank conversation, but discomfort around should this apply to people with developmental disabilities? What about people with psychiatric problems? We can’t change society’s attitudes and fears about psychological disabilities, but they’ll use that to try to defeat us. And the conversations were they’re going to try to divide and conquer, and it’s got to be all of us or none of us.
And again, that process took a while to work through at the national level, but it also, simultaneous with the national conversations, was going on at city and state levels all across the country.
And I do think that one real benefit, well, one unforeseen positive consequence from the passage of the ADA is it did play an important role in shifting away from the superstition and bigotry aimed at people with psychiatric, developmental and substance-related disabilities. It wasn’t necessarily a major objective, but I think it played a major role in forcing a national conversation about each of those constituencies.
Michelle Bishop:
So what was it like to be at the signing of the ADA after, I think it was what, a seven, eight-year fight for this bill? And it’s such a landmark piece of civil rights legislation, so comprehensive. It just must have been a really powerful moment to be there with all of those leaders in the White House then.
Jim Dickson:
Well, and a couple of things, the leadership, Justin, Pat Wright, Curt, Evan basically said to, and it was Evan’s relationship and Janine, his partner’s relationship with the Bushes. And I said, “We don’t want a little signing in the Rose Garden. This is a major piece of civil rights legislation. It affects everything.” And people all around the country worked, wrote, did letters to the editors. So we got to invite and hold it out behind the White House where all of those, who worked to make it happen, could come and be part of the celebration.
And there was a long line to get in the White House, and Curt being Curt, he was chatting with everybody and moving up and down the line. And I was towards the end with Justin and Curt says to Justin, “I don’t have my wallet or ID. It’s in a different suit. I put this suit on this morning straight from the cleaners.”
Michelle Bishop:
Oh, no. And if people don’t know about Curt Decker’s suit collection, that’s a whole other thing. Oh, my gosh. Okay, what happened?
Jim Dickson:
Well, he didn’t have any ID, and so the guards knew Justin and Justin said, “This man is important. He needs to be here. It’s a simple human error. I’ll vouch for him. Let him in.” And so Curt got in, but there was a minute or two there where it looked like he was going to be tearing through the fence in his new suit.
Michelle Bishop:
Oh, that’s terrible. I know he fought hard for the ADA. And his heart must’ve been in his throat.
Jim Dickson:
Yep. So I sat with Bob Cooper and other folks from Rhode Island, and Evan was on the stage.
Janine Bertram, Evan’s partner, had a colorful past and actually had a conviction around, I don’t remember specifically what it was, but trying to stop the Vietnam War. She broke through something, or pour blood on the records, or I don’t remember what it was. But in a big group like this, even though she had been playing bridge with George and Barbara Bush about once a month, there was real nervousness on the part of the security people about having her in the audience.
And Cooper and I were assigned to sort of run interference for her. And a very genteel Texas lady aristocrat was assigned to sit between Janine and the aisle to make sure she didn’t leave the aisle. And I played my blind card with my dog, and I got myself in the aisle.
And it was a riot because this woman was very nervous, and she had on a lot of jewelry, and whenever she jumped up, you could hear a jingle. And as people walked in and saw Janine, they’d all yell, “Hey, Janine,” and Janine would stand up, and people would hug, and I’d move out of the way so they’d hug. And this poor woman had mild heart attacks every time Janine stepped out into the aisle, but Janine knew she had to stay where we were.
But it was a, I don’t know what you would call it, it was an ironic, funny kind of capstone story. I used a white cane in those days, and I had a little, bunch of us had American flags handheld, and I taped my flag to my cane. And whenever we’d cheered and waved, I would stick my cane up in the air and wave it with the flag on it.
And at the very end of one of the network coverage, because this had never happened, there was well over a thousand people. And one of the networks picked up on that and showed the flag waving on a white cane a couple of times during this story.
And after the signing, we all went back out onto the Mall and had refreshments. And Justin and Evan and Pat worked the crowd saying, “Passing this law is going to be much easier than enforcing it, and we’re going to need organized fights to force enforcement.” And some of that’ll be legal, but a lot of that has to be political public education.
We were asked, people were asked to go back and meet with the editorial boards at their newspapers or TV. A lot of people had set up interviews with the local TV stations, either as they left or came back. And it was really important strategically and that the message for those who of us who were interviewed when we got home, “Oh, it was great, but it’s easier to pass the law than enforce it, and we’re going to have to work hard to get this enforced.”
And that message was delivered hundreds of times to local media by the folks who had come to Washington. It was very important.
Michelle Bishop:
And ain’t that the truth?
Jim Dickson:
Yes, yes.
Michelle Bishop:
That predicted the next 30 years of the disability rights movement. Yeah. Wow.
Jim Dickson:
Yeah. We still have a long way to go. I mean, the unemployment rate is still double for the able-bodied. We still have lots of people, because disability can pop up in a family for the first time, we still have lots of people being hidden, sheltered, not integrated by their families. And unlike other civil rights movements, we have not moved yet to where people with disabilities will run for office with the disability story being central to their political message.
After the passage of the Civil Rights Act, African Americans ran, arguing, debating, telling their story of discrimination. The women’s movement came along, women moved and ran on their stories. The gay rights successes came. But where were the people with disability running for office with their disability being an upfront in Central Park why they should be elected?
Michelle Bishop:
And yet you’ve never run yourself, Jim. Wait, maybe it’s time.
Jim Dickson:
I’m too old. I’m 78. If I were younger, I would’ve.
Michelle Bishop:
Also wait, I have one more question about the day the ADA was signed. You all after the signing was over, went around town talking about how we’re going to have to fight to enforce this bill. Nobody said, “For today, let’s stop and have a beer?”
Jim Dickson:
No, we did. People did do some of that, but we had… It was hot, and so we had ice cream and cold drinks set up on the Mall for people, and clusters of people had their beers and that kind of stuff.
Michelle Bishop:
That’s a good point. It was July. I think the other lesson learned for future disability rights leaders is do not have your major bill signed in the middle of the summer.
Jim Dickson:
Right.
Michelle Bishop:
You will have to go to anniversaries on the lawn every year in the heat.
Jim Dickson:
Yep.
Michelle Bishop:
This was fascinating to me that… I’m sorry, I’m also monopolizing. Did anybody else have questions or thoughts?
Jim Dickson:
You know, it is amazing when I was thinking about this. It’s been years since I got in an elevator that didn’t have a braille button. It’s been years since I had a cab driver or a restaurant saying, “You can’t come in here with that dog.”
So there has been real progress, but I’m not sure that it’s really spread thoroughly amongst the rank and file.
Michelle Bishop:
I was thinking that, too. Early on, you were talking about the braille buttons on the elevator. And when you were kind of bringing it all back around and talking about how we’ve come forward, but we still have a long way to go, in the back of my mind I was thinking, but I do always see braille on the elevator buttons.
Jim Dickson:
Yep, yep.
Michelle Bishop:
So we’ve solved a few problems.
Jim Dickson:
And now we even have elevators that announce, in addition to the braille.
Michelle Bishop:
So looking forward, I mean, this was really fantastic. We were all really interested in hearing about what it took to get the ADA passed, and also just that moment when you see your work come into fruition.
But looking forward, what do you think is the next big task, goal, I don’t… for the disability rights movement? Where do we go from here?
Jim Dickson:
I do think we have to start getting leaders to run for office at the local] and national level. As much progress as we have may about the public attitude towards disability, what just happened to Joe Biden says there is still prejudice and fear that bodily dysfunction and psychiatric dysfunction can generate in the general public.
And I think people running for school boards saying, “My experience being blind or deaf or using a wheelchair or whatever is important, and I can bring value to how the school system is run or the state legislature,” we need to force the dialogue.
It’s great that we’re seen as having civil rights, but we need to be seen as leaders outside of the disability silos. We need to be seen as people whose life experience will make us strong leaders who make the country, the state, the city a better place to live.
Michelle Bishop:
Jim, thank you. This was amazing. This was fascinating. I know I’m looking at my co-hosts, and they’re all getting really excited and really worked up. Stephanie said, #CriptheCongress-
Jim Dickson:
Right.
Michelle Bishop:
… which I love.
Thank you for hopping on with us and just sharing your story. I think it’s really important that we capture all of that.
Jim Dickson:
Right. I should mention Jonathan Young wrote a very good short book on the story of the passage of the ADA and for the life of me, I can’t remember the title.
Michelle Bishop:
Oh, we could probably find it and put it in the show notes if folks want to check it out.
Jim Dickson:
Yeah, should definitely be there because it tells a lot of good stories and points that I touched on for two minutes, get elaborated for 15 pages on the book. And it’s very readable. It’s not a tome.
Michelle Bishop:
Okay. Oh, thank you. We’ll look out for that. That’s amazing. Yeah, absolutely. I appreciate it.
I don’t know if folks know, Jim and I go way back, well, maybe not like signing of the ADA far back, but pretty far back.
Jim Dickson:
Yep.
Michelle Bishop:
We’ve done a lot of work together over the years on access to the vote for people with disabilities. So feel like looking towards the future in saying we need to be seen as leaders and we should not only be voting, but be elected to office. I feel like that’s where we leave it, right? That’s the message.
Jim Dickson:
Yep. Thanks a lot, everybody.
Jack Rosen:
Wow, that was so great of Jim to come on and share his stories with us and talk about what it was like to fight for the passage of the ADA.
Michelle Bishop:
My favorite thing about this interview is that our last ADA episode had Curt Decker, and this episode featured Jim calling out Curt Decker for wearing the wrong suit to the White House that didn’t have his ID in it, and almost not getting into the signing of the ADA. I will pretty much never forget that story.
Stephanie Flynt McEben:
That’s too funny.
Michelle Bishop:
Thanks, Jim. We appreciate it.
These days both Curt and Jim are, I’m going to say, mostly retired. Because they claim to be retired, but we still see them everywhere advocating for everything. So I hope Curt is off somewhere on a cruise and Jim is off somewhere sailing.
Stephanie Flynt McEben:
Wow.
Michelle Bishop:
Stephanie, do you have a joke for us?
Stephanie Flynt McEben:
I do, indeed. Are y’all ready for the… I feel like this one’s too easy, but oh, well.
Michelle Bishop:
I feel like we’re probably not ready.
Stephanie Flynt McEben:
No, it’s fine. So what do y’all call baked spaghetti? I feel like Michelle’s going to know this.
Jack Rosen:
Wait, I got it.
Stephanie Flynt McEben:
Oh, do you?
Michelle Bishop:
What is it? What is it?
Jack Rosen:
An impasta?
Stephanie Flynt McEben:
Yep. Go, Jack. Yay.
Michelle Bishop:
Jack, it’s finally your time. You got the joke.
Stephanie Flynt McEben:
I knew it was too easy.
Jack Rosen:
Finally. We need it. These used to be easier.
Stephanie Flynt McEben:
Sorry.
Jack Rosen:
No, it feels good. It’s a nice win.
Stephanie Flynt McEben:
<< I’m not sorry >>
Michelle Bishop:
You really stepped up your… You can’t sing Demi Lovato. We’re going to get sued.
Stephanie Flynt McEben:
Yep, exactly. That’s the whole point.
Michelle Bishop:
Okay, okay. That’s fair.
Well, before Demi Lovato comes for us and ends our podcast, Jack, can you tell the people where to find us on social media?
Jack Rosen:
If Demi Lovato’s attorneys would like to reach us to let us know they’re suing us, they can reach us at [email protected].
They could also let us know via the comments on our social media pages, which includes Facebook, Instagram, LinkedIn, Twitter, Threads and Blue Sky. So if you represent Demi Lovato, please reach out to us at any of those options.
Until next time, folks…
Stephanie Flynt McEben:
Bye.
32 min

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An insightful podcast by the National Disability Rights Network offering advocacy tools, heartfelt storytelling, and real-world policy insights—accessible whether you’re an advocate in the field or…

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